6/30/13--Sunday--Day 260--There IS a Light at the End of the Tunnel
May and June have been extremely busy months. We have been out of town five of the nine weekends and we hosted company at our house two additional weekends. I guess that has been a good thing because it has helped me not focus too much on the challenging effects of the crazy chemo I've been going through. At my last post, I had made it through most of week two without too much fatigue, but by the weekend, on a trip out of town the fatigue hit.
That Thursday, June 6th, would have been my grandmother's 100th birthday. We had planned her 100th birthday party for Saturday, June 8th. After her death in April, we decided to celebrate her life on that day and were going to spread her and my grandpa's ashes up on the Rim, but because of the severe heat and my niece just having her baby, my aunt decided to hold off and do something to honor my grandparents later on when it is cooler. But Brooklyn was home and wanted to be part of honoring my grandmother, and my sister and her family from Michigan had come for the celebration as well. So we decided to spend the day honoring my grandmother as planned, but just with our family. We made the trip to Cottonwood in our motorhome, which I was grateful for because I was able to lay on the couch and rest. It also helped with sleeping arrangements since our Albuquerque friends, Mike and Suzie, joined us, plus, with the three of us and my sister's family, there just wasn't enough space for everyone at my Dad's. Saturday morning we all drove up to the Rim. It was a great day reminiscing and telling favorite memories and stories of my grandparents. With a little help, I joined everyone on a small hike to an opening looking off the Rim. We spread out a couple of blankets and took in the wonderful view before making our way back to a shady campsite where we sat and shared our stories. Though my energy level was super low, and by the end of the day I was having trouble walking, I was so glad we made the extra effort to follow through with the plans. It brought the closure we needed and made for a great weekend with family.
We stayed in Cottonwood until Monday morning. From there, we drove to Show Low to meet up with the administrative team for our retreat Monday and Tuesday. I had been worried about whether I would feel up to attending the retreat, but since it was the first one we have had in over a decade, I really wanted to be part of it. I was glad it was during week three when I usually felt better. The original plan was all women were sharing rooms at a hotel, but I had become very nervous about doing that. First, with the diarrhea that accompanies the chemo, I'm up several times a night. Second, I have been wearing cute hats and scarfs to work, but I really wasn't ready to be bald in a room with co-workers. Also, my eyelash crisis had hit me hard, my eyebrows were now completely gone, and my hair was finally completely gone. Most importantly, I just wasn't comfortable being away from Greg, especially when I hit that wall of fatigue. So we knew driving the motorhome to Cottonwood and then to Show Low would fix a lot of problems. In Show Low, we parked just outside of the cabin where the retreat was being held. And while I missed the fun activities and comradery coming and going with the group, having Greg there in the motorhome made for a much better stay. I made it through the activities during the retreat. By dinner, however, I was super fatigued so I found a spot on the couch to sit with my feet up and rest while visiting with the group. I felt bad not helping with dinner preparations, but I was done. Greg worked on websites for both days and we made the trip home without incident.
After the retreat, I worked only one day in the office, Wednesday, before heading back to Mesa for chemo #3. Brooklyn went with us to the Cancer Center on June 13th. First we went to do labs, where, after three attempts by two two different nurses, they couldn't access by port, so they sent me up to see Heather on the infusion floor. I should have gone to Heather first. It's not like I didn't know that, but I always feel bad having to be the exception. Heather accessed my port first time, then we went to the second floor for my appointment with Dr. C. When I showed Dr. C. my completely bald head and my missing eye lashes, she reassured me that within about three to four months after chemo, my hair would be about the length of hers. However, it was a different statement that she made that shocked me and has really hung on my heart. I asked her if a year from now, would I have another PET scan to see if the chemo had worked and all the cancer was gone. Her reply, "You won't have another PET scan unless you start showing symptoms that the cancer has returned." I was shocked. I never really had any symptoms in the first place so how was that going to work? She said insurance wouldn't pay for another scan unless there were symptoms, and they, the doctors, wouldn't want to expose my body to the radioactivity unless it was necessary. Then she said, "Susan, treating cancer is an act of faith. We do what has been proven to work, and you have to have faith that it has worked." My heart sank and those words rang in my ears over and over. That's when I realized, there isn't going to be a clean bill of health, a stamp of reassurance that everything has worked and the cancer is all gone. It truly is going to be believing that after doing all of this, we've done everything we can and we simply have to BELIEVE it's all gone and it worked. Wow, what a wakeup call. It makes sense logically, but it was still a shock. I know the PET scan only shows tumors that are larger than a millimeter, and if the chemo and radiation did it's job, nothing would show up. But I guess I was hoping to have confirmation when nothing showed up on the PET scan. But then again, would that be false hope since everything would be / should be smaller than that after chemo and radiation anyways? While it was logical, it was just unsettling. An act of faith--I simply have to believe it's all gone. That does make the fear of it returning even greater. What if the mammary gland tumor didn't shrink? What if it is still there? But how could it be? If chemo shrinks large tumors, surely that small of a tumor has been taken care of. And they took out all of the other tumors. Faith--I have to believe. I know they will continue to take tumor markers, and with appointments every few months for the next five years, the doctors will be watching for any symptoms. It was a new concept and it was going to take time for that to sink in.
After that discussion, I described my anxiety and fogginess to Dr. C which begins the first day I'm off of the steroids Since I wasn't experiencing any nausea or bad reactions, she wanted to have the pharmacist, Mike, come in and talk about cutting down the amount of steroids I had been taking. After she left, Mike came in and agreed with Dr. C. about reducing the steroids. Instead of two a day for the first three days, he wanted me to take only one a day. He felt what I was experiencing was a bit of steroid psychosis so reducing the amount of steroids in my body should reduce those effects.
Following our discussion with Mike, we went back to the infusion floor and Cheryl started the tangled mess of tubes which now make up my chemo treatments. It looks much different now than it did the last time Brooklyn went with me in March. Cheryl was sad to tell us that she would be on vacation during my last chemo on July 3rd. She was truly heart-broken after all that we have been through together. We were too but promised to send her pictures and stop in to see her when she returned.
Infusion went well and once we were finished, we went to the first floor to meet with Dr. Grade, the radiologist I had seen back in November. We were finally ready to start planning for the six weeks of radiation. I was glad to get a plan in place but mostly, to get a "IT'S FINALLY OVER" date. I explained we were trying to work around a trip to California in late July to celebrate Preston's 21st birthday, as well as a trip to Idaho in late August to move Brooklyn into the BSU dorms. She said missing one day in August would not be a problem, and we decided to start after the California trip because she was going to be out of town at that same time anyways. So the radiation start date would be August 1st. That day they will do what they call "mapping", which I guess involves placing some sticky tags on me of some kind, which have to stay on until the following week. They take measurements and place all kinds of data into the computer. The following Tuesday, they / the computer have a plan and take me through what they call a dry run. Then radiation starts the following day, Wednesday, August 7th, on our 31st wedding anniversary. I have 30 treatments so that should make my final treatment on September 18th. So that was it--the date we have been looking forward to. Twenty-six days short of one year from when this thing started on October 14th, 2012, it would all be over. That was a little surreal, but I finally felt like I could plan the last leg of the race. From what Dr. Grade said, it seems like this part of the race will be all downhill, a lot easier than this last phase of chemo has been. Now we could make some plans.
From there we headed home, but only for the night. With such a busy month ahead, we knew that weekend would be the only weekend to take Brooklyn to the lake. Plus, during my first weekend after chemo, I have the most energy because of the steroids. Friday morning we headed to the lake where Greg, Brooklyn and I spent the day on the water. Friday night Preston and Yuri met us and Saturday morning my dad, my sister, Sharon, and her daughter, Sarah, drove up for the day. We had such a great time. I did get nauseated late in the afternoon Saturday and the drive home proved to be a challenge. A breeze kept it tolerable and not too hot, but since the motorhome wouldn't sleep that many, and it was too hot to sleep outside, everyone followed us home late Saturday night so we could celebrate Fathers' Day together on Sunday.
Only taking one steroid a day instead of two seemed to help me not be as foggy or have as much anxiety; however, I did have to use some of the nausea pills. Being a little nauseated was worth not being so foggy or anxious. I also notice that what usually hits Monday evening, actually hit Monday morning before I went to work. I was nervous and a bit anxious, but since it wasn't as severe, it was manageable, even at work. In fact being at work focused on projects actually helped me not be as anxious. I managed through Monday and Tuesday but by Wednesday morning, I was super sick. More sick than I had been. The nausea pills helped but my body was just exhausted with fatigue.
After spending the weekend with my dad, my sister and I realized he had come to a point where he was ready for us to go through more of my mom's stuff. He seemed to be at a point of acceptance and he was ready to move forward and start creating a new life, which was good. I knew whenever he was ready, we also needed to be ready. Though I was originally planning to work that week, Sharon agreed to stay an extra week if I would go to Cottonwood and we could go through the stuff my dad wanted us to. That would be the beginning of week two, when my fatigue would be high, but I knew I needed to do it. So even though I was super sick, I rode to Cottonwood on Wednesday with Sharon and spent the next four days going through lots of memories and keepsakes. I rested between projects and took things slowly, but I pushed forward accomplishing everything I set out to do. I know my dad was relieved to get it done and I was super glad to do it when Sharon was there to help. It was a lot of work and I don't know how I would have done it by myself.
I returned home Sunday thanks to Brooklyn who came up Saturday to pick me up. That started the last week in June, my last week before Brookie returned to Idaho :( Trina, my friend with whom Brooklyn has been living in Idaho, decided to drive to Arizona to do some business and to celebrate her husband, Brannon's, 50th birthday, which also gave Brooklyn a ride back to Idaho. I worked Monday and Trina and her kiddos arrived Monday evening. We enjoyed a day visiting Tuesday and I worked again Wednesday while Trina went to Phoenix for business and to pick up Brannon from the airport. Thursday and Friday were spend enjoying company and my daughter before they headed out Saturday morning. Saturday brought the end of two full weeks of being super busy with activities and company. I was so glad Brookie came to stay for the month of June. Having her here gave me so much strength and helped distract me from the chemo. It was like finally having a friend join me on the back side of the marathon. I so needed that encouragement and distraction.
Despite being super busy, overall, chemo three was really, really challenging. It was truly the worst so far, I'm sure because of the build-up in my system. I was much more nauseated and fatigued than I had been with the first two so I am not at all looking forward to doing chemo one more time. At the same time, I keep trying to focus on this next one, July 3rd, being the last one. Interestingly, over the last week, tons of new eyelashes have started to sprout, my eyebrows are appearing and I have a head full of soft fuzzy hair that has started to grow. I even have hair growing on my legs again. That seems really strange to me. It's almost like chemo three didn't work and my body thinks it's all over. I'm sure that's not it because I was way too sick, but it's really odd. I am curious if I am going to lose it all again after my last chemo on Wednesday. It will make for an interesting three weeks--will my hair and lashes remain and keep growing or will everything fall out once again. Either way, Wednesday will mark the beginning of the end of this whole process and I can finally see, There IS a Light at the End of the Tunnel!
Sunday, June 30, 2013
Tuesday, June 4, 2013
Tears, Confusion, and Missing Eyelashes..........
6/4/13--Tuesday--Day 234--Only 7 1/2 More Weeks of Chemo
So I am in week two of the three-week cycle. Week one started becoming a challenge Sunday evening a few hours after my last post. We were in Albuquerque still helping on the balloon chase crew. Steve, the balloonist, invited us all over for a barbecue. My brain had started to feel fuzzy by early Sunday evening, but I really wanted to go. Steve's beautiful daughter, Maddy, had just graduated, but I had forgotten her card and present at home, so I decided to stop and get a card and some cash and send her present later. Greg dropped me at the door of the store and I went in and found a card without issue. Standing in line, I decided to use my debit card, something I rarely do, to get some extra cash to put in the card rather then a check. When I arrived at the register, I became completely confused. I stared at the three credit cards in my purse, and for the life of me, couldn't figure out which was my debit card. I carefully looked at each card and could not figure out which was a credit card and which was my debit card. I was embarrassed, confused, frustrated, and scared all at once. My heart began to race, I broke out in a cold sweat, and tears rushed into my eyes. "I'm so sorry," I squeaked to the cashier as I backed out of line. "I'm not sure which card I need to use." She was so very sweet as I told her I would be back in a few minutes. Shaking, I grabbed my phone and called Greg asking him to come inside. Tears were streaming down my face when he came in, obviously worried about what was wrong. I could tell he was confused by what happened, but he went back in line with me and helped me get the cash I needed. As we walked out, I sobbed as I tried to explain that I had no idea what my debit card looked like. He wrapped his arms around me and held me tight as I tried to calm down before returning to the vehicle and our friends. It scared us both. Later that night, I saw Greg talking with one of our friends and explaining what happened. I could see the fear in his eyes. I think, for the first time, we both realized how important it was for him to always be with me. It was truly a very real example of just how crazy these drugs make my mental state.
Monday we made it home without incident, but the fogginess continued to increase. By Monday evening, which was the first day off of steroids, all of the panic and anxiety set in, just like it had with the first round. My body actually tremored and I couldn't settle anywhere for long. As the anxiety increased, I couldn't focus or sit still. I finally decided to sit outside in the gazebo, watch the sunset as I tried to stay calm, and just survive what I knew would pass. I sat there for two hours trying to logically reason myself through this before finally breaking down in tears. It was the craziest, most mixed up feeling. Greg came out to check on me and, just like the last time, I was short with him, which he didn't deserve. I snapped at everything he said, but he hung in there staying calm, wiping my tears, and showing nothing but love and support. I was so glad to finally just go to bed that night. Monday nights are definitely the start of the worst three days of the whole cycle.
Tuesday and Wednesday were exactly like they had been in the previous cycle. I didn't drive because of the fogginess, but I worked each day without incident. Eating became the huge challenge it had been before. I struggled to eat anything because everything tasted horrible.
Wednesday I had a great surprise, but the suddenness of it threw me completely. My daughter, Brooklyn, has been attending college in Idaho. She was supposed to come home for the month of June, but some changes in Idaho had caused her to change the trip home to July instead of June. When she first told me, I was devastated. I needed her home in June. This race was becoming such a challenge, and I needed the distraction and the emotional support in June. On Tuesday she called me and told me she was going camping (in Idaho) with some friends. Like any mom, I worried about her Tuesday night being out in the woods, but she was out of cell phone contact. Wednesday, while I was sitting at my desk, Brooklyn came walking through the door. I would like to say I was completely surprised, but honestly, it was more like complete confusion. Instead of my mind being surprised to see her, all I kept saying is "How are you here? You're supposed to be camping." I literally could not figure out how she could be in my office when she was camping in Idaho. Again, another example of how crazy the drugs make you.
Thursday morning as Greg drove me to work, he asked me how was I able to work, but didn't feel comfortable driving. It was interesting because I can function at work very productively. I can focus, produce, answer questions, and work, really, without an issue. What seemed to throw me off is any sudden change. It seems like if something unexpected happens, or something that is completely our of the normal routine of things, I can't process it. That is exactly what had happened at the store in Albuquerque. I always use my credit card and rarely my debit. When I suddenly tried to do something completely different than my "normal" routine, my mind wouldn't process it. When Brooklyn walked in the door, my mind wouldn't process it. I just stayed completely confused as to how she could be in two places at the same time. So that's why I was afraid of driving. There are too many quick decisions that have to be made and too much quick change to which you have to respond.
So week one was pretty much exactly how it had been the first cycle, other than this time I knew the bad stuff wouldn't last. Having Brooklyn home completely lifted my spirits. She will probably never know just how much I needed her, and I will always be grateful her plans worked out to bring her home to me for the month of June rather than July.
Though Brooklyn's return brought a few happy days, Saturday I was completely overwhelmed again. We had decided to head to Mesa Saturday to hang out with family and friends. Saturday morning as I was getting ready to go, devastation hit--overnight, most of my eyelashes had fallen out. There were only 23 lashes left on my right eye--yes, I counted every single one. My heart sank and I truly bawled. I screamed inside my head as I thought, "Really? Eight weeks to go and you have to take my last piece of dignity?" I cried for two hours as I tried to apply mascara to the few lashes that remained. My right eye had more than my left, but was still spotted with huge chunks missing. My eyebrows had completely thinned to almost single strands on the outsides. What was I going to do? I have never worn any makeup except mascara, but I have worn mascara since I was a teenager. I have never gone without it. I wear waterproof, so I even wear it at the lake. Even in the hospital during my surgeries, I had mascara on. Now, everyone was going to see me not only without mascara, but with no eye lashes at all. I was humiliated, devastated, furious, overwhelmed, and at a loss. Once again Greg came upstairs trying to calm me. I sobbed as I packed my bag. I cried most of the way to Mesa. I just couldn't believe I had to endure another blow. I truly felt worse about this than losing my hair. I had prepared for the hair loss but prayed I wouldn't have to lose my eyelashes. And since I had kept them up to this point, I assumed I had escaped that horrible loss--WRONG.
Being around family helped distract me from my devastation. We hung out at my Aunt Mary's with my dad, my sister, Sharon, and her family from Michigan, and my beautiful niece Jennifer, who was nine months pregnant and expecting in the next two days. We had two sets of friends in the Phoenix area who were holding parties, but I was in week two when my blood counts drop, so we decided it wouldn't be good for me to be around crowds of people. Plus, with my new eyelash issue, I couldn't even fathom being around people. But I also knew Greg really needed a break, so while I was surrounded with family, I sent him off to both gatherings to represent the two of us. He texted me pictures of him with our friends, and I could tell he was relaxed and having fun, a break he really needed. He has been my care-taker, companion, and partner through every single step of this. In the mean time, I played games and visited with my family. We stayed the night at Preston's, and Sunday morning I woke crying again. I just couldn't get over my eyelashes. We laid in bed four hours talking, crying, and just being together supporting each other before returning to my aunts. I managed two short trips to the store, one Saturday and one Sunday. On Saturday, I struggled after staying at the store too long and had to sit on a bench when the fatigue brought cold sweats and tears. Sunday's trip went better.
Surprisingly, yesterday and today I have felt pretty good. I have not had the severe fatigue I experienced on the second week during the first cycle, at least not yet. Both evening I have come home from work and accomplished a few little tasks rather than sleeping in the recliner, so that is good. We'll see how the rest of this week goes.
While I have started each morning crying as I look in the mirror and try to figure out how to hang on to the last few eyelashes left, I know in my heart it is a futile effort. There's no way the eyelashes left will stay another seven and a half weeks. The left side of my head above my ear has finally lost almost all hair. It's the first truly bald area with no hair whatsoever and if feels really odd to feel; it's almost sticky. The rest of my head still has a super thin layer of hair, but I'm pretty sure that will change in the next couple of weeks.
This second cycle has been easier only in the fact that I know what to expect, and that the symptoms from each week don't last all three weeks. And while I spill all of my fears and feelings here on the blog, I have kept a positive attitude by focusing on the idea that I only really have seven and a half more weeks of chemo.
So I am in week two of the three-week cycle. Week one started becoming a challenge Sunday evening a few hours after my last post. We were in Albuquerque still helping on the balloon chase crew. Steve, the balloonist, invited us all over for a barbecue. My brain had started to feel fuzzy by early Sunday evening, but I really wanted to go. Steve's beautiful daughter, Maddy, had just graduated, but I had forgotten her card and present at home, so I decided to stop and get a card and some cash and send her present later. Greg dropped me at the door of the store and I went in and found a card without issue. Standing in line, I decided to use my debit card, something I rarely do, to get some extra cash to put in the card rather then a check. When I arrived at the register, I became completely confused. I stared at the three credit cards in my purse, and for the life of me, couldn't figure out which was my debit card. I carefully looked at each card and could not figure out which was a credit card and which was my debit card. I was embarrassed, confused, frustrated, and scared all at once. My heart began to race, I broke out in a cold sweat, and tears rushed into my eyes. "I'm so sorry," I squeaked to the cashier as I backed out of line. "I'm not sure which card I need to use." She was so very sweet as I told her I would be back in a few minutes. Shaking, I grabbed my phone and called Greg asking him to come inside. Tears were streaming down my face when he came in, obviously worried about what was wrong. I could tell he was confused by what happened, but he went back in line with me and helped me get the cash I needed. As we walked out, I sobbed as I tried to explain that I had no idea what my debit card looked like. He wrapped his arms around me and held me tight as I tried to calm down before returning to the vehicle and our friends. It scared us both. Later that night, I saw Greg talking with one of our friends and explaining what happened. I could see the fear in his eyes. I think, for the first time, we both realized how important it was for him to always be with me. It was truly a very real example of just how crazy these drugs make my mental state.
Monday we made it home without incident, but the fogginess continued to increase. By Monday evening, which was the first day off of steroids, all of the panic and anxiety set in, just like it had with the first round. My body actually tremored and I couldn't settle anywhere for long. As the anxiety increased, I couldn't focus or sit still. I finally decided to sit outside in the gazebo, watch the sunset as I tried to stay calm, and just survive what I knew would pass. I sat there for two hours trying to logically reason myself through this before finally breaking down in tears. It was the craziest, most mixed up feeling. Greg came out to check on me and, just like the last time, I was short with him, which he didn't deserve. I snapped at everything he said, but he hung in there staying calm, wiping my tears, and showing nothing but love and support. I was so glad to finally just go to bed that night. Monday nights are definitely the start of the worst three days of the whole cycle.
Tuesday and Wednesday were exactly like they had been in the previous cycle. I didn't drive because of the fogginess, but I worked each day without incident. Eating became the huge challenge it had been before. I struggled to eat anything because everything tasted horrible.
Wednesday I had a great surprise, but the suddenness of it threw me completely. My daughter, Brooklyn, has been attending college in Idaho. She was supposed to come home for the month of June, but some changes in Idaho had caused her to change the trip home to July instead of June. When she first told me, I was devastated. I needed her home in June. This race was becoming such a challenge, and I needed the distraction and the emotional support in June. On Tuesday she called me and told me she was going camping (in Idaho) with some friends. Like any mom, I worried about her Tuesday night being out in the woods, but she was out of cell phone contact. Wednesday, while I was sitting at my desk, Brooklyn came walking through the door. I would like to say I was completely surprised, but honestly, it was more like complete confusion. Instead of my mind being surprised to see her, all I kept saying is "How are you here? You're supposed to be camping." I literally could not figure out how she could be in my office when she was camping in Idaho. Again, another example of how crazy the drugs make you.
Thursday morning as Greg drove me to work, he asked me how was I able to work, but didn't feel comfortable driving. It was interesting because I can function at work very productively. I can focus, produce, answer questions, and work, really, without an issue. What seemed to throw me off is any sudden change. It seems like if something unexpected happens, or something that is completely our of the normal routine of things, I can't process it. That is exactly what had happened at the store in Albuquerque. I always use my credit card and rarely my debit. When I suddenly tried to do something completely different than my "normal" routine, my mind wouldn't process it. When Brooklyn walked in the door, my mind wouldn't process it. I just stayed completely confused as to how she could be in two places at the same time. So that's why I was afraid of driving. There are too many quick decisions that have to be made and too much quick change to which you have to respond.
So week one was pretty much exactly how it had been the first cycle, other than this time I knew the bad stuff wouldn't last. Having Brooklyn home completely lifted my spirits. She will probably never know just how much I needed her, and I will always be grateful her plans worked out to bring her home to me for the month of June rather than July.
Though Brooklyn's return brought a few happy days, Saturday I was completely overwhelmed again. We had decided to head to Mesa Saturday to hang out with family and friends. Saturday morning as I was getting ready to go, devastation hit--overnight, most of my eyelashes had fallen out. There were only 23 lashes left on my right eye--yes, I counted every single one. My heart sank and I truly bawled. I screamed inside my head as I thought, "Really? Eight weeks to go and you have to take my last piece of dignity?" I cried for two hours as I tried to apply mascara to the few lashes that remained. My right eye had more than my left, but was still spotted with huge chunks missing. My eyebrows had completely thinned to almost single strands on the outsides. What was I going to do? I have never worn any makeup except mascara, but I have worn mascara since I was a teenager. I have never gone without it. I wear waterproof, so I even wear it at the lake. Even in the hospital during my surgeries, I had mascara on. Now, everyone was going to see me not only without mascara, but with no eye lashes at all. I was humiliated, devastated, furious, overwhelmed, and at a loss. Once again Greg came upstairs trying to calm me. I sobbed as I packed my bag. I cried most of the way to Mesa. I just couldn't believe I had to endure another blow. I truly felt worse about this than losing my hair. I had prepared for the hair loss but prayed I wouldn't have to lose my eyelashes. And since I had kept them up to this point, I assumed I had escaped that horrible loss--WRONG.
Being around family helped distract me from my devastation. We hung out at my Aunt Mary's with my dad, my sister, Sharon, and her family from Michigan, and my beautiful niece Jennifer, who was nine months pregnant and expecting in the next two days. We had two sets of friends in the Phoenix area who were holding parties, but I was in week two when my blood counts drop, so we decided it wouldn't be good for me to be around crowds of people. Plus, with my new eyelash issue, I couldn't even fathom being around people. But I also knew Greg really needed a break, so while I was surrounded with family, I sent him off to both gatherings to represent the two of us. He texted me pictures of him with our friends, and I could tell he was relaxed and having fun, a break he really needed. He has been my care-taker, companion, and partner through every single step of this. In the mean time, I played games and visited with my family. We stayed the night at Preston's, and Sunday morning I woke crying again. I just couldn't get over my eyelashes. We laid in bed four hours talking, crying, and just being together supporting each other before returning to my aunts. I managed two short trips to the store, one Saturday and one Sunday. On Saturday, I struggled after staying at the store too long and had to sit on a bench when the fatigue brought cold sweats and tears. Sunday's trip went better.
Surprisingly, yesterday and today I have felt pretty good. I have not had the severe fatigue I experienced on the second week during the first cycle, at least not yet. Both evening I have come home from work and accomplished a few little tasks rather than sleeping in the recliner, so that is good. We'll see how the rest of this week goes.
While I have started each morning crying as I look in the mirror and try to figure out how to hang on to the last few eyelashes left, I know in my heart it is a futile effort. There's no way the eyelashes left will stay another seven and a half weeks. The left side of my head above my ear has finally lost almost all hair. It's the first truly bald area with no hair whatsoever and if feels really odd to feel; it's almost sticky. The rest of my head still has a super thin layer of hair, but I'm pretty sure that will change in the next couple of weeks.
This second cycle has been easier only in the fact that I know what to expect, and that the symptoms from each week don't last all three weeks. And while I spill all of my fears and feelings here on the blog, I have kept a positive attitude by focusing on the idea that I only really have seven and a half more weeks of chemo.
Sunday, May 26, 2013
The Next Three Weeks Begins--Treatment Two of Four.........
5/26/13--Sunday--Day 225--Starting It Over Again.......
Wednesday afternoon we headed to Mesa to start the second chemo session of phase two. After this three-week routine, that puts only two more treatments and six more weeks before chemo is all done! We headed over Wednesday because I had my checkup with Dr. Matt, my ovarian gynecology oncology surgeon. I will see him every three months now through January of 2014 and then every four months through 2014 and a bunch more but less often after that over the next five years. This time he ran my first tumor markers. Tumor markers are a blood test that help in tracing if certain types of tumors may be growing back. They are not a sure thing, but they can help in early diagnosis over time. Anything under 36 is good, and mine was at 19 for ovarian tumors so that was something to celebrate. I'm not sure why they are not doing breast tumor markers yet, but I assume they will wait until after the chemo is over at this point.
After the doctor's visit, we spent a great evening taking Preston to dinner at Texas Roadhouse and then to see the movie, Star Trek. Dinner tasted fabulous. My taste started returning on Monday, and by Tuesday I had Greg take me to Casa where I could actually taste everything for the first time in almost three weeks. So since I assumed I would only have two days of tasting, I enjoyed eating at two of my favorite places.
After enjoying a night with Preston, we headed for chemo number two first thing on Thursday morning. Though Dr. Cianfrocca usually sees patients each time during this phase of chemo, we knew she would be out of town for this one. We set an appointment for the previous Monday in case I was having lots of trouble and needed to see her, but planned on canceling from the beginning, which we did. Fortunately for me, Heather was in labs for the morning and, like always, she accessed my port first time. And then I got double lucky because she headed to the infusion floor and was stationed right next to Cheryl for the day so I was able to visit with both of them. I've missed seeing them weekly. I told them staying in Safford that first Thursday since January I found myself almost lost with what to do. I've grown close to both Heather and Cheryl and appreciate what a great job they both do professionally, but more importantly, I appreciate them as people. We have shared personal stories about our lives, their children and family, and I feel like we've become friends. There is a trust and reassurance that they care about me as a person, and that makes going to see both of them so much better.
Before we started, I explained to Cheryl my funny, scary, and strange experiences and side effects from the last three weeks. I could tell by the look on her face that she knew all of this before I even told her my stories, and when I asked her, she admitted she knew this would be part of my new regiment before I left last time. Of course she did. What she says, and sometimes what she doesn't say, is what makes her so wonderful.
While we were waiting for my labs to come back, the acupuncture doctor came by. This is a new, free service MD Anderson has started offering for patients. I've seen him talking to others before about nausea, but since I haven't had much nausea, I've haven't really paid too much attention. When he started talking to me, I found out he had treatments for neuropathy, (numb feet) so that might be worth a shot. Cheryl was a little concerned over the swelling of my feet and hands, and, to have the acupuncture treatments, you have to have an okay from your physician, so Cheryl called Mary, a PA whom I hadn't met. Mary didn't want me to have the acupuncture this time because of the swelling and decided to give me Lasix, something that was supposed to make me go potty a lot and drain some of the fluid so we did that instead. Mary eventually came up to the infusion floor and met with me personally, which was really nice. She was supper sweet and is was nice to get to know her story. After see the swelling, she said acupuncture would be okay, but we decided to maybe try it next time. While sitting there, I also talked with a patient in the next cubby who said he had numb feet while on the 5-FU. That was a little encouraging because that means this is not just left over from the Taxol and may still not be permanent. We'll see how it goes during this next three weeks.
Treatment was long again. There are just so many medicines now. We didn't leave until late afternoon and this time I had to drive a vehicle home because Preston had driven the Prius to Mesa from the lake to have some work done on it. We knew from the first treatment I felt pretty good, better than with the Taxol, so we knew I would be fine getting home. I guess all the steroids help those first three days. I made it home without incident, and though I did potty a little more, it wasn't red this time.
I went to work on Friday, and though I was a little tired, all went well. Friday afternoon, we headed to Albuquerque for the weekend. Our good friend Suzie had some surgery on Tuesday and we wanted to go to support her. She was so absolutely wonderful helping me during my surgeries. It was the least I could do. Plus, there was a ballooning competition this weekend and I had hoped to have enough energy to ride along on Steven Adams' chase crew. I knew the three days of steroids would give me some energy. Preston and Yuri really wanted to come since they weren't able to make the October balloon fiesta so they met us there. And Greg went ballooning with us every morning this time so between him, Preston, and Yuri, I brought stand-ins to represent Arizona on the chase crew. Saturday morning I did pretty good helping on the smaller tasks. This morning was a little more of a struggle, but after taking a good long nap today, I feel much better this afternoon. Tomorrow morning we have one more flight and then we'll have some breakfast and take a leisurely ride home.
So far this round of chemo the major side effect has been seeing my taste fade quickly. Yesterday morning I could taste a sip of Greg's chocolate milk but by this morning I couldn't. Protein still seems to get through as we had smoked brisket last night with an amazing Rudy's barbecue sause that I could clearly taste. And we had steaks for lunch today which had some taste still. I can still taste my strawberries and fluff, so that's good. Cheryl did tell me MD Anderson actually has a service by one of their chefs who will help do taste-testing to see what tastes gets through. Being out of town, I doubt we would ever use it, but it is definitely another nice way they try to help. She also said each time it could be different tastes that get through, so that could be odd. So far it seems to be about the same. I can't taste sugar or sweets at all, which isn't a bad thing, so it seems to be following the same pattern.
So, this will be round two of four, which is encouraging and I am definitely prepared this go round, so I'm hoping the stress and anxiety will be much less. Thank you to all of the readers of this blog, my family, friends, and co-workers who helped me and supported me through these last three scary weeks. It was definitely the worst part of this since the surgeries. I appreciate the comments made on the blog, the text messages, and the emails. You all have no idea just how important that support has been to get me through this. Your comments have been so encouraging! I don't know what I would do if this was just Greg and I trying to support each other all alone. We both get down sometimes and your support to both of us has been awesome and more appreciated than you could possibly know. So hang in there with us as we undergo these next three weeks Starting It All Over Again.......
Wednesday afternoon we headed to Mesa to start the second chemo session of phase two. After this three-week routine, that puts only two more treatments and six more weeks before chemo is all done! We headed over Wednesday because I had my checkup with Dr. Matt, my ovarian gynecology oncology surgeon. I will see him every three months now through January of 2014 and then every four months through 2014 and a bunch more but less often after that over the next five years. This time he ran my first tumor markers. Tumor markers are a blood test that help in tracing if certain types of tumors may be growing back. They are not a sure thing, but they can help in early diagnosis over time. Anything under 36 is good, and mine was at 19 for ovarian tumors so that was something to celebrate. I'm not sure why they are not doing breast tumor markers yet, but I assume they will wait until after the chemo is over at this point.
After the doctor's visit, we spent a great evening taking Preston to dinner at Texas Roadhouse and then to see the movie, Star Trek. Dinner tasted fabulous. My taste started returning on Monday, and by Tuesday I had Greg take me to Casa where I could actually taste everything for the first time in almost three weeks. So since I assumed I would only have two days of tasting, I enjoyed eating at two of my favorite places.
After enjoying a night with Preston, we headed for chemo number two first thing on Thursday morning. Though Dr. Cianfrocca usually sees patients each time during this phase of chemo, we knew she would be out of town for this one. We set an appointment for the previous Monday in case I was having lots of trouble and needed to see her, but planned on canceling from the beginning, which we did. Fortunately for me, Heather was in labs for the morning and, like always, she accessed my port first time. And then I got double lucky because she headed to the infusion floor and was stationed right next to Cheryl for the day so I was able to visit with both of them. I've missed seeing them weekly. I told them staying in Safford that first Thursday since January I found myself almost lost with what to do. I've grown close to both Heather and Cheryl and appreciate what a great job they both do professionally, but more importantly, I appreciate them as people. We have shared personal stories about our lives, their children and family, and I feel like we've become friends. There is a trust and reassurance that they care about me as a person, and that makes going to see both of them so much better.
Before we started, I explained to Cheryl my funny, scary, and strange experiences and side effects from the last three weeks. I could tell by the look on her face that she knew all of this before I even told her my stories, and when I asked her, she admitted she knew this would be part of my new regiment before I left last time. Of course she did. What she says, and sometimes what she doesn't say, is what makes her so wonderful.
While we were waiting for my labs to come back, the acupuncture doctor came by. This is a new, free service MD Anderson has started offering for patients. I've seen him talking to others before about nausea, but since I haven't had much nausea, I've haven't really paid too much attention. When he started talking to me, I found out he had treatments for neuropathy, (numb feet) so that might be worth a shot. Cheryl was a little concerned over the swelling of my feet and hands, and, to have the acupuncture treatments, you have to have an okay from your physician, so Cheryl called Mary, a PA whom I hadn't met. Mary didn't want me to have the acupuncture this time because of the swelling and decided to give me Lasix, something that was supposed to make me go potty a lot and drain some of the fluid so we did that instead. Mary eventually came up to the infusion floor and met with me personally, which was really nice. She was supper sweet and is was nice to get to know her story. After see the swelling, she said acupuncture would be okay, but we decided to maybe try it next time. While sitting there, I also talked with a patient in the next cubby who said he had numb feet while on the 5-FU. That was a little encouraging because that means this is not just left over from the Taxol and may still not be permanent. We'll see how it goes during this next three weeks.
Treatment was long again. There are just so many medicines now. We didn't leave until late afternoon and this time I had to drive a vehicle home because Preston had driven the Prius to Mesa from the lake to have some work done on it. We knew from the first treatment I felt pretty good, better than with the Taxol, so we knew I would be fine getting home. I guess all the steroids help those first three days. I made it home without incident, and though I did potty a little more, it wasn't red this time.
I went to work on Friday, and though I was a little tired, all went well. Friday afternoon, we headed to Albuquerque for the weekend. Our good friend Suzie had some surgery on Tuesday and we wanted to go to support her. She was so absolutely wonderful helping me during my surgeries. It was the least I could do. Plus, there was a ballooning competition this weekend and I had hoped to have enough energy to ride along on Steven Adams' chase crew. I knew the three days of steroids would give me some energy. Preston and Yuri really wanted to come since they weren't able to make the October balloon fiesta so they met us there. And Greg went ballooning with us every morning this time so between him, Preston, and Yuri, I brought stand-ins to represent Arizona on the chase crew. Saturday morning I did pretty good helping on the smaller tasks. This morning was a little more of a struggle, but after taking a good long nap today, I feel much better this afternoon. Tomorrow morning we have one more flight and then we'll have some breakfast and take a leisurely ride home.
So far this round of chemo the major side effect has been seeing my taste fade quickly. Yesterday morning I could taste a sip of Greg's chocolate milk but by this morning I couldn't. Protein still seems to get through as we had smoked brisket last night with an amazing Rudy's barbecue sause that I could clearly taste. And we had steaks for lunch today which had some taste still. I can still taste my strawberries and fluff, so that's good. Cheryl did tell me MD Anderson actually has a service by one of their chefs who will help do taste-testing to see what tastes gets through. Being out of town, I doubt we would ever use it, but it is definitely another nice way they try to help. She also said each time it could be different tastes that get through, so that could be odd. So far it seems to be about the same. I can't taste sugar or sweets at all, which isn't a bad thing, so it seems to be following the same pattern.
So, this will be round two of four, which is encouraging and I am definitely prepared this go round, so I'm hoping the stress and anxiety will be much less. Thank you to all of the readers of this blog, my family, friends, and co-workers who helped me and supported me through these last three scary weeks. It was definitely the worst part of this since the surgeries. I appreciate the comments made on the blog, the text messages, and the emails. You all have no idea just how important that support has been to get me through this. Your comments have been so encouraging! I don't know what I would do if this was just Greg and I trying to support each other all alone. We both get down sometimes and your support to both of us has been awesome and more appreciated than you could possibly know. So hang in there with us as we undergo these next three weeks Starting It All Over Again.......
Sunday, May 19, 2013
Living With The Side Effects.........
5/19/13--Sunday--Day 218--It Is What It Is
I am three days into my third week, the week my blood cells are supposed to be repairing and rebuilding enough to do this all over again come Thursday. These last three weeks have been quite a ride. I am so glad I blogged about the scary and challenging days so when I go back through this again, I can re-read my posts and remember I can survive the side effects.
Week two brought pretty challenging fatigue, swollen feet and hands, and absolutely no return of my tastebuds or appetite. I continue to be thankful that I have a job done mostly sitting at a computer because throughout the week, the littlest bit of exertion some days completely wiped me out. Monday I was reminded that my taste had not returned when I attended a luncheon at a Mexican restaurant and still couldn't really tasted much. Even now, my tastes is extremely limited. The good thing is, I can't tasted foods like chips, ice cream, chocolate, sweets, candy or even popcorn so I don't snack at all. Strawberries and fluff still have an uncanny attraction so I've stocked up on cream cheese and marshmallow. With the fatigue this week, I have tried to eat protein hoping that would help, plus, meat seems to have some flavor for me.
As for the fatigue, most of the week I worked through lunch then left the office fully exhausted only to come home and fall asleep in the recliner for a few hours. Thursday, we decided to try a walk after work. That was difficult. Before we made it back, I hit that wall of fatigue and ended up standing in a field crying and frustrated, but we finally made it. Friday wasn't much better. At lunch, I tried to do some grocery shopping, something that has been a huge challenge. We thought it might be easier at lunch than after working all day, but, by the time I was walking to the car, I was in tears once again. I don't know why the fatigue brings tears, but they just start, and I can't really control them. Greg has been so amazingly patient. I feel so badly for him. He has been right by my side every day supporting me, encouraging me, and helping me face everything from pain to fear to fatigue. I don't know what I would do without him.
My feet and hands have also experienced quite a bit of swelling. I've never had trouble with my ankles swelling in the past, but much of week one and some of week two I couldn't see my ankle bone. When my hands first started swelling, I took two of my rings off, thank goodness.
Saturday we decided to try a day-trip to the lake. Greg's dad, Randall, joined us and Preston and Yuri met us there. I stayed under the canope driving the boat most of the day. By early afternoon I was pretty tired, but was able to hang in there for the rest of the day. We left by 3 after a great day watching Greg, Preston and Yuri ski, air chair, and wake surf. When we got home I slept several hours, but I was really glad we went. I didn't get in the lake, first, because it was cold, but also because I was just a little worried about being susceptible to infections or something. Plus, with me being so cold all of the time anyway, I was too cold to get colder. The coldness isn't nearly as bad as it was on Taxol, but I am still colder than normal most of the time, especially my feet. I stayed wrapped in a coverup and towels most of the day at the lake, but my feet seemed cold all day. My feet have actually been bothering me A LOT! They are still very numb, yet very sensitive. It's hard to explain other than the pins and needles you feel when you first walk on feet that have fallen asleep. I feel that all of the time so walking is sometimes like walking on a shoe full of sharp rocks. I'm still keep hoping that it is temporary and will eventually go away.
Today, Sunday, I notice my right hand and arm were swollen quite a bit. I'm afraid lymphedema may have finally caught up to me, despite all of my efforts to avoid it. Greg does the lymphatic massage every day in the shower; I haven't eaten salt since January; I wear gloves when I do any kind of work with chemicals or even to wash dishes; and most difficult, I have completely avoided the hot tub. Despite all of this, today my hand is swollen so much that I could hardly put on my dish gloves. Once I notice, I had Greg help me put the sleeve and glove on and I wore it all day. By this evening, when I took it off, the swelling continues and I can hardly see my knuckles. I am so very sad about this new issue. One of the side effects of 5-FU, one of the chemotherapy drugs, is something called Hand-Foot Syndrome, which is also characterized by swelling. It would be great if this were that, but because the swelling is only on my right side, I'm not sure if this is Hand-Foot Syndrome or the Lymphedema. I will call the doctor in the morning.
I did start the day with more energy than I've felt in three weeks; however, after doing a few chores around the house, just after putting my sleeve and glove on, a wave of fatigue sent me to sleep in the recliner again, but only for about 45 minutes this time. This afternoon we did manage to go see a movie, The Great Gatsby. I couldn't help but think that every college prep English student I taught in the 80's and 90's has to be thinking of my class when they see that advertised or see the movie. It was a nice break from my current reality and lots of reminiscing of the many years I taught that book and all of the symbolism in it. And to end the day, I had a great visit with my friend and one of my former yearbook editors, Shawna Brown Kruglar, who was in town for the weekend. It was nice to spend some time with her, her parents, her husband, and her three beautiful children, one whom she named Lindsey after me. That always makes me smile. I loved watching her beautiful girls, five and seven, play, as well as her son who has grown so much.
Emotionally, it has been a very challenging few weeks. Greg has really struggled as well. He seems to somehow feel some of the same things I do--sympathy pains I guess. I know we both have been emotionally challenged by this. I did do something that was really hard for me but important. We had insurance sign-up at work two days this week. That is when everyone in the district comes to the District office sometime during those two days and signs up for insurance. I took a picture of me from last October, and another of me from this month with my bald head. I placed the pictures side-by-side. Above the pictures I wrote, "Considering Cancer Insurance? Think Hard. I'm Susan Lindsey and I'm 48. No one in my family had cancer." I printed and framed the picture and took it to my friend, Jim, the AFLAC representative, to display as people came by to see him. It was tough because I haven't really shown "the public" my bald head. I always wear hats or scarfs. But it was such an important cause to help people really consider getting a cancer policy, so I decided to do it. It was one positive thing I felt like I could do because of cancer.
So after this really tough couple of weeks, and an exceptionally tough Friday, one thing that finally settled in with me this weekend is simply, "It is what it is." I know that probably sounds trite, but for the first time, deep down inside, I've realized I just have to accept whatever this whole thing brings with it, no matter what that is. Sometimes that is really, really hard. I feel so ugly most of the time, and now I have this swollen arm. I've also lost several chunks of eye lashes and fear I may lose them all, which is about all of the female left of me. I've been frustrated by the look of my right breast as it has started to pucker and sink in around the scar, and it is so much smaller than the left. It's easy to get down and frustrated, but for some reason, this weekend, I took a deep breath and just realized, "It is what it is," and really, there is absolutely nothing I can do about it but survive and get through it. So, as ugly as I feel, as awful as these side effects are, I am alive and I want to stay alive--I want to kick this thing. A co-worker stopped by my office this week. While we have talked on the phone several times this year, he had no idea I had cancer until he saw my picture at the AFLAC table during insurance sign-up. He came to my office to tell me how sorry he was and that he had no idea I had cancer. And then he told me he lost his 48 year old sister to breast cancer in February after she fought it for two years. "She did everything right," he said, "but the treatments just weren't enough and it came back and took her." My heart sank. I realized this weekend that no matter what happens to me, nothing is as important as surviving. I want to live--ugly, scarred, swollen arm, numb feet--no matter how hard it is, none of it really matters as long as I live. I am 48 years young and as hard as this all has been, it is time for me to accept all of the side effects of cancer because honesty, "It is what it is" and survival is all that really matters.
I am three days into my third week, the week my blood cells are supposed to be repairing and rebuilding enough to do this all over again come Thursday. These last three weeks have been quite a ride. I am so glad I blogged about the scary and challenging days so when I go back through this again, I can re-read my posts and remember I can survive the side effects.
Week two brought pretty challenging fatigue, swollen feet and hands, and absolutely no return of my tastebuds or appetite. I continue to be thankful that I have a job done mostly sitting at a computer because throughout the week, the littlest bit of exertion some days completely wiped me out. Monday I was reminded that my taste had not returned when I attended a luncheon at a Mexican restaurant and still couldn't really tasted much. Even now, my tastes is extremely limited. The good thing is, I can't tasted foods like chips, ice cream, chocolate, sweets, candy or even popcorn so I don't snack at all. Strawberries and fluff still have an uncanny attraction so I've stocked up on cream cheese and marshmallow. With the fatigue this week, I have tried to eat protein hoping that would help, plus, meat seems to have some flavor for me.
As for the fatigue, most of the week I worked through lunch then left the office fully exhausted only to come home and fall asleep in the recliner for a few hours. Thursday, we decided to try a walk after work. That was difficult. Before we made it back, I hit that wall of fatigue and ended up standing in a field crying and frustrated, but we finally made it. Friday wasn't much better. At lunch, I tried to do some grocery shopping, something that has been a huge challenge. We thought it might be easier at lunch than after working all day, but, by the time I was walking to the car, I was in tears once again. I don't know why the fatigue brings tears, but they just start, and I can't really control them. Greg has been so amazingly patient. I feel so badly for him. He has been right by my side every day supporting me, encouraging me, and helping me face everything from pain to fear to fatigue. I don't know what I would do without him.
My feet and hands have also experienced quite a bit of swelling. I've never had trouble with my ankles swelling in the past, but much of week one and some of week two I couldn't see my ankle bone. When my hands first started swelling, I took two of my rings off, thank goodness.
Saturday we decided to try a day-trip to the lake. Greg's dad, Randall, joined us and Preston and Yuri met us there. I stayed under the canope driving the boat most of the day. By early afternoon I was pretty tired, but was able to hang in there for the rest of the day. We left by 3 after a great day watching Greg, Preston and Yuri ski, air chair, and wake surf. When we got home I slept several hours, but I was really glad we went. I didn't get in the lake, first, because it was cold, but also because I was just a little worried about being susceptible to infections or something. Plus, with me being so cold all of the time anyway, I was too cold to get colder. The coldness isn't nearly as bad as it was on Taxol, but I am still colder than normal most of the time, especially my feet. I stayed wrapped in a coverup and towels most of the day at the lake, but my feet seemed cold all day. My feet have actually been bothering me A LOT! They are still very numb, yet very sensitive. It's hard to explain other than the pins and needles you feel when you first walk on feet that have fallen asleep. I feel that all of the time so walking is sometimes like walking on a shoe full of sharp rocks. I'm still keep hoping that it is temporary and will eventually go away.
Today, Sunday, I notice my right hand and arm were swollen quite a bit. I'm afraid lymphedema may have finally caught up to me, despite all of my efforts to avoid it. Greg does the lymphatic massage every day in the shower; I haven't eaten salt since January; I wear gloves when I do any kind of work with chemicals or even to wash dishes; and most difficult, I have completely avoided the hot tub. Despite all of this, today my hand is swollen so much that I could hardly put on my dish gloves. Once I notice, I had Greg help me put the sleeve and glove on and I wore it all day. By this evening, when I took it off, the swelling continues and I can hardly see my knuckles. I am so very sad about this new issue. One of the side effects of 5-FU, one of the chemotherapy drugs, is something called Hand-Foot Syndrome, which is also characterized by swelling. It would be great if this were that, but because the swelling is only on my right side, I'm not sure if this is Hand-Foot Syndrome or the Lymphedema. I will call the doctor in the morning.
I did start the day with more energy than I've felt in three weeks; however, after doing a few chores around the house, just after putting my sleeve and glove on, a wave of fatigue sent me to sleep in the recliner again, but only for about 45 minutes this time. This afternoon we did manage to go see a movie, The Great Gatsby. I couldn't help but think that every college prep English student I taught in the 80's and 90's has to be thinking of my class when they see that advertised or see the movie. It was a nice break from my current reality and lots of reminiscing of the many years I taught that book and all of the symbolism in it. And to end the day, I had a great visit with my friend and one of my former yearbook editors, Shawna Brown Kruglar, who was in town for the weekend. It was nice to spend some time with her, her parents, her husband, and her three beautiful children, one whom she named Lindsey after me. That always makes me smile. I loved watching her beautiful girls, five and seven, play, as well as her son who has grown so much.
Emotionally, it has been a very challenging few weeks. Greg has really struggled as well. He seems to somehow feel some of the same things I do--sympathy pains I guess. I know we both have been emotionally challenged by this. I did do something that was really hard for me but important. We had insurance sign-up at work two days this week. That is when everyone in the district comes to the District office sometime during those two days and signs up for insurance. I took a picture of me from last October, and another of me from this month with my bald head. I placed the pictures side-by-side. Above the pictures I wrote, "Considering Cancer Insurance? Think Hard. I'm Susan Lindsey and I'm 48. No one in my family had cancer." I printed and framed the picture and took it to my friend, Jim, the AFLAC representative, to display as people came by to see him. It was tough because I haven't really shown "the public" my bald head. I always wear hats or scarfs. But it was such an important cause to help people really consider getting a cancer policy, so I decided to do it. It was one positive thing I felt like I could do because of cancer.
So after this really tough couple of weeks, and an exceptionally tough Friday, one thing that finally settled in with me this weekend is simply, "It is what it is." I know that probably sounds trite, but for the first time, deep down inside, I've realized I just have to accept whatever this whole thing brings with it, no matter what that is. Sometimes that is really, really hard. I feel so ugly most of the time, and now I have this swollen arm. I've also lost several chunks of eye lashes and fear I may lose them all, which is about all of the female left of me. I've been frustrated by the look of my right breast as it has started to pucker and sink in around the scar, and it is so much smaller than the left. It's easy to get down and frustrated, but for some reason, this weekend, I took a deep breath and just realized, "It is what it is," and really, there is absolutely nothing I can do about it but survive and get through it. So, as ugly as I feel, as awful as these side effects are, I am alive and I want to stay alive--I want to kick this thing. A co-worker stopped by my office this week. While we have talked on the phone several times this year, he had no idea I had cancer until he saw my picture at the AFLAC table during insurance sign-up. He came to my office to tell me how sorry he was and that he had no idea I had cancer. And then he told me he lost his 48 year old sister to breast cancer in February after she fought it for two years. "She did everything right," he said, "but the treatments just weren't enough and it came back and took her." My heart sank. I realized this weekend that no matter what happens to me, nothing is as important as surviving. I want to live--ugly, scarred, swollen arm, numb feet--no matter how hard it is, none of it really matters as long as I live. I am 48 years young and as hard as this all has been, it is time for me to accept all of the side effects of cancer because honesty, "It is what it is" and survival is all that really matters.
Monday, May 13, 2013
Finally, A Much Needed Break......
5/13/13--Monday--Day 212--Turning A Corner
FINALLY! I feel like I finally turned a corner this weekend on what has been one of the most difficult weeks since the surgeries. I'm sure part of the difficulty of the week has been being so scared as I experienced all of this unknown. And even though the side effects were challenging, hopefully knowing how to plan for the next three treatments will help me have less anxiety.
By Thursday morning my head had cleared up enough that I felt comfortable driving myself to work. I still worked through lunch since my appetite or taste had not improved at all. My dad had come earlier in the week so it was a nice relief to have him and Preston here. By the end of the day Thursday, I was super tired. I had put a roast on so I didn't have to worry about dinner, but when I got home, I had bigger worries. Greg was super sick. Thursday was the one week mark and the day Dr. C said my numbers would start to plummet and I would be at great risk as my immunity system would be compromised ....and Greg was upstairs puking. Oh my goodness our timing couldn't have been worse. I immediately put on a mask and must have washed my hands a hundred times in between trying to take care of him. The good news was he didn't seem to have a fever, but he looked bad as he was stuck on the toilet with diarrhea and leaning over a bucket. Luckily, by the end of the night, he still had no fever, no chills, no aches and, with the help of Pepto Bismo, he finished puking and felt much better. We determined it might have been food poisoning from KFC's gross boneless chicken we had tried the night before. Preston had felt poorly earlier in the day as had I, though I am hard to throw in the mix. Anyways, as a precaution, I slept downstairs, and the next morning we sterilized everything upstairs, but Greg was definitely better, thank goodness.
Friday, with the start of week two, I woke up dragging. If my blood counts had dropped, as predicted, I was definitely feeling the fatigue Dr. C had described I would. It was a push to go to work, and once I got there, a push to be productive, but I was. I finished my scheduled meetings and was working through lunch as normal when a knock on my door brought a huge, and much needed surprise. Mike and Suzie had come from Albuquerque to surprise me and that they did. I couldn't believe they were here and instantly broke in to tears. It had been such a horrible week, both physically and mentally, and I was facing my first Mother's Day without my mom and my grandma, and with Brooklyn being away. After drying tears, I left work early. We went to get a snow cone on the way home, which I laughed at because my taste was so bad, but suddenly, I could taste a little of the flavoring. I thought I had tasted a little of the grape jelly earlier that morning, but I definitely had a break though on some flavoring of the snow cone. My afternoon was getting even better.
I spent a much better-than-expected Mother's Day weekend surrounded by family (Greg, Preston and my dad) and close friends. It truly helped keep my mind off of my physical state and helped me face what could have been one of the most difficult days since my mother's death. Greg wanted to try a lake trip Saturday, but after doing a short bit of running around Friday afternoon, it was clear the fatigue I was experiencing was not going to let me do much activity so we opted for a relaxing weekend at home instead. Saturday, the fatigue continued so I rested in between a few short trips out, but much of the day was spent just hanging out, watching movies and playing games. As the weekend progressed, my tastebuds seemed to improve some. Friday night I actually experienced my first hunger pain, and my mouth actually burned a little from salsa, which were both welcome feelings. The biggest taste all weekend (which ended up being a craving) came from strawberries and fluff, which was a cream cheese and marshmallow dipping recipe. The funny thing is, I don't usually even really like strawberries, but whatever it was, I could taste strawberries and fluff better than anything. Sunday was the first day I woke up feeling good. I didn't have to sit down in between doing every little things, and I never hit that wall of fatigue, which I had hit both Friday and Saturday at some point.
So thanks to Preston and my dad being there, Brooklyn for spending time on the phone with me, and thanks to our amazing friends, Mike & Suzie, the end of my very difficult week finally came and I experienced some much-needed relief both physically and mentally. I am feeling good this morning. I still have to remind myself to drink because I have no thrust and my taste is still extremely limited, but I can so do this! I now know I can survive the next three treatments over the next ten weeks. I am so much more encouraged now and am so grateful about finally Turning a Corner!
Friday, with the start of week two, I woke up dragging. If my blood counts had dropped, as predicted, I was definitely feeling the fatigue Dr. C had described I would. It was a push to go to work, and once I got there, a push to be productive, but I was. I finished my scheduled meetings and was working through lunch as normal when a knock on my door brought a huge, and much needed surprise. Mike and Suzie had come from Albuquerque to surprise me and that they did. I couldn't believe they were here and instantly broke in to tears. It had been such a horrible week, both physically and mentally, and I was facing my first Mother's Day without my mom and my grandma, and with Brooklyn being away. After drying tears, I left work early. We went to get a snow cone on the way home, which I laughed at because my taste was so bad, but suddenly, I could taste a little of the flavoring. I thought I had tasted a little of the grape jelly earlier that morning, but I definitely had a break though on some flavoring of the snow cone. My afternoon was getting even better.
I spent a much better-than-expected Mother's Day weekend surrounded by family (Greg, Preston and my dad) and close friends. It truly helped keep my mind off of my physical state and helped me face what could have been one of the most difficult days since my mother's death. Greg wanted to try a lake trip Saturday, but after doing a short bit of running around Friday afternoon, it was clear the fatigue I was experiencing was not going to let me do much activity so we opted for a relaxing weekend at home instead. Saturday, the fatigue continued so I rested in between a few short trips out, but much of the day was spent just hanging out, watching movies and playing games. As the weekend progressed, my tastebuds seemed to improve some. Friday night I actually experienced my first hunger pain, and my mouth actually burned a little from salsa, which were both welcome feelings. The biggest taste all weekend (which ended up being a craving) came from strawberries and fluff, which was a cream cheese and marshmallow dipping recipe. The funny thing is, I don't usually even really like strawberries, but whatever it was, I could taste strawberries and fluff better than anything. Sunday was the first day I woke up feeling good. I didn't have to sit down in between doing every little things, and I never hit that wall of fatigue, which I had hit both Friday and Saturday at some point.
So thanks to Preston and my dad being there, Brooklyn for spending time on the phone with me, and thanks to our amazing friends, Mike & Suzie, the end of my very difficult week finally came and I experienced some much-needed relief both physically and mentally. I am feeling good this morning. I still have to remind myself to drink because I have no thrust and my taste is still extremely limited, but I can so do this! I now know I can survive the next three treatments over the next ten weeks. I am so much more encouraged now and am so grateful about finally Turning a Corner!
Wednesday, May 8, 2013
So THIS is Chemo......
5/8/13--Wednesday--Day 207--A Little Better, A Whole Lot Worse
Well I made it through Tuesday at work without making a complete fool of myself. Though I am still foggy and dazed, at least I can focus, concentrate and produce, so that's good. I am still scared of this feeling though. It's funny because sometimes it intensifies in waves. I had to make a trip to the high school yesterday to check on a project. Carol was going to drive and as we were walking to her car, that fogginess intensified. I just kept thinking to myself, "Wow, I can't imagine coming to work impaired like this on purpose." I am thankful I can still focus and work through it so it's more of an annoyance than an impediment. I want to keep working. That's important, especially this time of year.
As for eating, that's still a trip. I tried scrambled eggs with cheese and toast yesterday morning--nothing. No hunger, no taste, no reason to eat. I just stayed at work and worked through lunch; no reason to have Greg come get me to eat when there is absolutely no desire. It's like my whole body is numb--my taste buds, my tongue, my stomach, my mind, my skin. It's just weird. I'm trying to be "responsible" and make myself eat because my mind, while having no hunger, knows you're "supposed" to eat to stay healthy. I certainly would love to just fast for the next three months and lose all the extra weight while the desire is gone, but that's obviously not such a good idea.
Last night, Preston came home for a week between finals and moving into full-time hours at work so we went to Casa Manana, one of my favorite Mexican places, for dinner. Surely that would wet my appetite. I'm sure the food was probably great, but I couldn't taste Mexican either. Funny, we went through a bottle and a half of hot sauce without my mouth burning even a little, lol. Of course the next problem is when your tummy and appetite are numb, you don't know when to STOP eating either. You don't feel hungry, but you don't feel full--you just don't feel. So imagine me sitting there--"hmmmm, wonder if I should stop eating now? I'm not hungry; I'm not full; have I even eaten anything?" It's pretty crazy.
So besides the fogginess, besides the numbness, and besides the food issue, last night we got the first swelling too. That was fun. My ankles were/are huge! Thank goodness I had taken off my rings, at least on my right hand, because my right hand and arm are huge. That's even scarier because is it the chemo meds, is it the steroids, which I assume since my ankles are huge too, or is it lymphedema finally developing since my right arm is bigger than my left? I look like the Pillsbury Dough Girl exploding with puffiness and swelling, I swear. I wasn't sure I was even going to fit into my clothes this morning.
So that's the latest. Figured I would finish and publish my update here during lunch since I certainly wasn't going out for lunch. Thank you so much to those of you continuing to follow my journey. That is so important right now. I'm scared and afraid and feel crazy out of control but I really appreciate those of you continuing to send words of encouragement. You have been a great support system hanging in there with me. This phase continues to be rough and I have leaned on all the wonderful words you have sent. Thank you. I told someone earlier today, "Oh, so THIS is chemo!" I don't know what the last 12 weeks have been, but so far, this has second phase has been a whole lot worse. Sorry if I've been too negative. Sometimes it helps to vent. I'll get it together soon :)
Well I made it through Tuesday at work without making a complete fool of myself. Though I am still foggy and dazed, at least I can focus, concentrate and produce, so that's good. I am still scared of this feeling though. It's funny because sometimes it intensifies in waves. I had to make a trip to the high school yesterday to check on a project. Carol was going to drive and as we were walking to her car, that fogginess intensified. I just kept thinking to myself, "Wow, I can't imagine coming to work impaired like this on purpose." I am thankful I can still focus and work through it so it's more of an annoyance than an impediment. I want to keep working. That's important, especially this time of year.
As for eating, that's still a trip. I tried scrambled eggs with cheese and toast yesterday morning--nothing. No hunger, no taste, no reason to eat. I just stayed at work and worked through lunch; no reason to have Greg come get me to eat when there is absolutely no desire. It's like my whole body is numb--my taste buds, my tongue, my stomach, my mind, my skin. It's just weird. I'm trying to be "responsible" and make myself eat because my mind, while having no hunger, knows you're "supposed" to eat to stay healthy. I certainly would love to just fast for the next three months and lose all the extra weight while the desire is gone, but that's obviously not such a good idea.
Last night, Preston came home for a week between finals and moving into full-time hours at work so we went to Casa Manana, one of my favorite Mexican places, for dinner. Surely that would wet my appetite. I'm sure the food was probably great, but I couldn't taste Mexican either. Funny, we went through a bottle and a half of hot sauce without my mouth burning even a little, lol. Of course the next problem is when your tummy and appetite are numb, you don't know when to STOP eating either. You don't feel hungry, but you don't feel full--you just don't feel. So imagine me sitting there--"hmmmm, wonder if I should stop eating now? I'm not hungry; I'm not full; have I even eaten anything?" It's pretty crazy.
So besides the fogginess, besides the numbness, and besides the food issue, last night we got the first swelling too. That was fun. My ankles were/are huge! Thank goodness I had taken off my rings, at least on my right hand, because my right hand and arm are huge. That's even scarier because is it the chemo meds, is it the steroids, which I assume since my ankles are huge too, or is it lymphedema finally developing since my right arm is bigger than my left? I look like the Pillsbury Dough Girl exploding with puffiness and swelling, I swear. I wasn't sure I was even going to fit into my clothes this morning.
So that's the latest. Figured I would finish and publish my update here during lunch since I certainly wasn't going out for lunch. Thank you so much to those of you continuing to follow my journey. That is so important right now. I'm scared and afraid and feel crazy out of control but I really appreciate those of you continuing to send words of encouragement. You have been a great support system hanging in there with me. This phase continues to be rough and I have leaned on all the wonderful words you have sent. Thank you. I told someone earlier today, "Oh, so THIS is chemo!" I don't know what the last 12 weeks have been, but so far, this has second phase has been a whole lot worse. Sorry if I've been too negative. Sometimes it helps to vent. I'll get it together soon :)
Monday, May 6, 2013
Completely Different Than Expected..........
5/6/13--Day 205--Monday--Panic Mode
I probably shouldn't even be posting tonight, but I decided to record the scary feelings from today. I thought I was somewhat prepared for the new drugs in my system and what side effects to expect. I did my research, wrote about them in my blog to help me remember, and went to bed yesterday feeling like I could keep a handle on things over the next few days. But this morning I woke up with a completely unexpected, strange feeling. I felt as though I had taken too many cold medications. My head was groggy and a bit confused, but not too bad. I ate a bowl of cereal which I didn't want and had no taste, but thought it best to start the day with something in my stomach. I grabbed my nausea pills, which I never needed, and headed to work.
As soon as I started to drive I knew my head wasn't right. I was dizzy, my vision even seemed blurred, and my head felt even more foggy and not clear. I was picking up Greg from the tire shop as he dropped off the truck to have the tires rotated. When he got in the car, I told him I didn't really feel safe driving and thought he should drop me off at work, which he did.
As I walked in to the office, I felt like I was walking in a dream. I stumbled a bit at the door and decided I probably shouldn't walk much for a bit until I could get my head cleared and focus. Maybe working on the computer and concentrating would help. I was able to carry on clear and concise conversations. I worked with my team as we planned the next two-day project. I made phone calls, answered emails, and completed my planned list of items to do. But everything continued to seem somewhat surreal. By lunch, I wasn't the slightest bit hungry, but decided to have Greg bring me something to eat just in case it would help clear up my head. It tasted awful and didn't help my head. Afterwards, I had another meeting, which seemed easy to navigate through, but still, I just wasn't right.
By 3 o'clock, I started to deteriorate even more. I was now completely frustrated. I can't work like this! This is not what I was expecting. How do you unclear a foggy head? How am I going to navigate this? I hadn't read anything anywhere about this being a side effect. Where was the nausea, the fatigue, even the red flashes I had been experiencing? This was just completely unexpected.
Shortly after 4 I asked Carol to drive me home. Maybe I just needed to get in bed and sleep it off. That's what you do when you take too much cold medication, right? Maybe that would help with this too. I went straight up to bed, and while I did rest, I couldn't go to sleep. My mind kept going and when it was calm, it was still just laying there with me--wide awake. One hour passed when I looked at the clock. "Okay, Susan, just lay here some more. At least you are resting." Two hours passed--panic had started to set in and I felt like I had to get up, but didn't know what to do if I did. I asked Greg to come up and be with me for awhile. What were we going to do? How was I going to handle this. He stayed with me for a bit before I got anxious and really needed to get up. Maybe I needed to be active. Maybe we should go on a walk. I went downstairs--it was too dark to go for a walk. I figured I needed to try and move a bit and maybe that would flush my head out some. I at least needed to try to focus on something other than laying there trying not to focus. I decided to sweep and mop the kitchen, which desperately needed to be done. The more I worked, the more scared I got. "Just keep going," I thought to myself. "Get this done and you'll feel better." I started to cry as I worked. Nothing was working. Nothing.
I finished the kitchen floor, dusted the living room, cleaned the toilets. Greg jumped in and helped by vacuuming, trying hard to help me stay calm. I snapped at him, which wasn't right. I felt badly. He's been so good. What was wrong with me? I just kept crying. I wasn't obsessed, but was trying to do something to make my head clear up. What were my choices? I couldn't sit and think about it anymore. What I did keep thinking about was how am I going to function? How am I going to work if this doesn't pass quickly?
By the end of tonight, I feel better having cleaned some of the house, but as I head upstairs, I'm scared about what tomorrow will bring. This is the end of the school year--one of our busiest times. We are one person down at work already. We have so much to do. I have to be able to work. I don't need to have these emotional cycles or mental interference. I can handle physical challenges and side effects, but please Lord, get this stuff out of my head. I don't want to be working in a daze or functioning in panic mode!
I probably shouldn't even be posting tonight, but I decided to record the scary feelings from today. I thought I was somewhat prepared for the new drugs in my system and what side effects to expect. I did my research, wrote about them in my blog to help me remember, and went to bed yesterday feeling like I could keep a handle on things over the next few days. But this morning I woke up with a completely unexpected, strange feeling. I felt as though I had taken too many cold medications. My head was groggy and a bit confused, but not too bad. I ate a bowl of cereal which I didn't want and had no taste, but thought it best to start the day with something in my stomach. I grabbed my nausea pills, which I never needed, and headed to work.
As soon as I started to drive I knew my head wasn't right. I was dizzy, my vision even seemed blurred, and my head felt even more foggy and not clear. I was picking up Greg from the tire shop as he dropped off the truck to have the tires rotated. When he got in the car, I told him I didn't really feel safe driving and thought he should drop me off at work, which he did.
As I walked in to the office, I felt like I was walking in a dream. I stumbled a bit at the door and decided I probably shouldn't walk much for a bit until I could get my head cleared and focus. Maybe working on the computer and concentrating would help. I was able to carry on clear and concise conversations. I worked with my team as we planned the next two-day project. I made phone calls, answered emails, and completed my planned list of items to do. But everything continued to seem somewhat surreal. By lunch, I wasn't the slightest bit hungry, but decided to have Greg bring me something to eat just in case it would help clear up my head. It tasted awful and didn't help my head. Afterwards, I had another meeting, which seemed easy to navigate through, but still, I just wasn't right.
By 3 o'clock, I started to deteriorate even more. I was now completely frustrated. I can't work like this! This is not what I was expecting. How do you unclear a foggy head? How am I going to navigate this? I hadn't read anything anywhere about this being a side effect. Where was the nausea, the fatigue, even the red flashes I had been experiencing? This was just completely unexpected.
Shortly after 4 I asked Carol to drive me home. Maybe I just needed to get in bed and sleep it off. That's what you do when you take too much cold medication, right? Maybe that would help with this too. I went straight up to bed, and while I did rest, I couldn't go to sleep. My mind kept going and when it was calm, it was still just laying there with me--wide awake. One hour passed when I looked at the clock. "Okay, Susan, just lay here some more. At least you are resting." Two hours passed--panic had started to set in and I felt like I had to get up, but didn't know what to do if I did. I asked Greg to come up and be with me for awhile. What were we going to do? How was I going to handle this. He stayed with me for a bit before I got anxious and really needed to get up. Maybe I needed to be active. Maybe we should go on a walk. I went downstairs--it was too dark to go for a walk. I figured I needed to try and move a bit and maybe that would flush my head out some. I at least needed to try to focus on something other than laying there trying not to focus. I decided to sweep and mop the kitchen, which desperately needed to be done. The more I worked, the more scared I got. "Just keep going," I thought to myself. "Get this done and you'll feel better." I started to cry as I worked. Nothing was working. Nothing.
I finished the kitchen floor, dusted the living room, cleaned the toilets. Greg jumped in and helped by vacuuming, trying hard to help me stay calm. I snapped at him, which wasn't right. I felt badly. He's been so good. What was wrong with me? I just kept crying. I wasn't obsessed, but was trying to do something to make my head clear up. What were my choices? I couldn't sit and think about it anymore. What I did keep thinking about was how am I going to function? How am I going to work if this doesn't pass quickly?
By the end of tonight, I feel better having cleaned some of the house, but as I head upstairs, I'm scared about what tomorrow will bring. This is the end of the school year--one of our busiest times. We are one person down at work already. We have so much to do. I have to be able to work. I don't need to have these emotional cycles or mental interference. I can handle physical challenges and side effects, but please Lord, get this stuff out of my head. I don't want to be working in a daze or functioning in panic mode!
Sunday, May 5, 2013
Chemotherapy Phase II Begins--The Next Twelve Weeks...........
5/5/2013--Sunday--Day 204--A Whole New World
Last week, I received a phone call from Renee Davis, a co-worker, asking if I would speak at Safford's Relay for Life event scheduled for May 3rd. She wanted me to introduce myself, what type of cancer I have, share what type of support system I have, and what motivates me to get through this. The speech would be the day after my first chemo of phase II of this journey. Though I was worried about the effects the new drugs might have on me, I didn't hesitate to accept the invitation--something inside just told me to do it. She also asked me to attend the Survivors' dinner that Friday, the week before the event, which I agreed to do as well.
Friday, April 26th was the Survivors' Dinner, which was the same day I wrote about in my last blog when I had trouble making it through the work day. Despite having a rough day, Greg and I attended the dinner. Our children, Preston and Brooklyn, have both participated in past Relay for Life events, but Greg and I have never been a part of it, so we had no idea what to expect. Walking into the Survivors' Dinner was a new experience that brought many different feelings. The first thing I noticed was the same thing that bothers me when I go into the MD Anderson Cancer Center--I'm pretty much the youngest one there. Most of the other people my age at the center, as well as that night at the dinner, are caregivers attending with their parents who are being treated or, at the dinner, were the survivors. The second thing I noticed was I was the only person without hair. I guess the others have made it through their journey already and are truly survivors, whereas it felt like I was the only one there still in the middle of my fight.
As we sat through the dinner, I realized there was a whole other world of people in Safford that existed that I didn't really know, yet I was suddenly part of this world due to this horrible disease. We all shared that struggle in common, which now made us a group, whether we knew each other or not. One of my former students, Lisa, ran the dinner, and other former students and colleagues were also volunteers all there to honor and serve the survivors. We received purple T-shirts to wear to the relay as well as luminaria bags to decorate for the race. I began to hit my wall of exhaustion so Greg took me home shortly after the meal. I didn't know exactly what I was going to say at the relay, but I had a week to think about what information I could share that would truly make a difference for people to hear.
Prior to leaving for Mesa for my first chemo of part II, Monday through Wednesday were high stress days for me. I was working on finalizing a very important grant for school which we had been preparing for months. My feet had become worse than they had been in many weeks, and both Monday and Tuesday I had worked late finalizing the grant. By Wednesday, the grant deadline, it was in its final stage and all I needed to do was upload some changes and submit it. When technical glitches arose with the online application, I became more overwhelmed than usual. While I called the grant support help-line and I knew the issues would be resolved, I found myself stressing much more than I usually would be. I hated that. It's not like me. It was another reminder of the additional stress cancer can have on your life, even in a place where you are usually calm and collected. But it all worked out and the grant was submitted by 2PM, hours before it was due and by 4 we were heading to Mesa to spend the night before our early 7:30AM appointments started the next day.
Once we arrived in town, we spent the evening visiting with our friends, Paul and Diane, delivering a bon voyage gift for their travels to Ireland, a trip we strongly considered going on with them before my diagnosis last fall. They were great company and provided a good way to relax away the stress of the week before facing the next day. We returned to Preston's early to get a good night's sleep.
Chemo 1 Part II: The morning started with early labs. A new girl, Traci, accessed my port on the first shot since Heather wasn't there, so that was a relief. From there we went to the 2nd floor to meet with Dr. C. She explained the new drug regiment along with some side effects to watch for and the risks that come with the new drugs. We were done with Taxol, thank goodness, so hopefully the numbness in my feet with subside soon. But more importantly, hopefully the side effects of these new drugs won't be worse than numb feet. It was scary hearing about everything, but here were the basics on risks: 1) There is a 1% chance these drugs can affect my heart, which is why they did the EKG prior to starting any chemo. 2) These drugs can cause liver damage, so it is important to drink A LOT of water to keep the liver flushed. 3) These drugs have a 1% chance of causing leukemia. At that point I asked Dr. C. what other options we had and were there choices of drugs with treating breast cancer. She explained, besides the Taxol, two of the three new drugs were the most common and standard drug regiments given with breast cancer patients by most all breast oncologists. The third drug was a standard for MD Anderson as their research showed the three together, along with the regiment of Taxol I had already received, had the most positive results in fighting cancer. That is when you have to have faith in your doctor and believe she is doing the very best treatment for your case.
She then explained the side effects of the new three drugs. There can be nausea for the first 3-5 days, but they will give me medicines to control that. Starting on day 7, I will be most susceptible to infections because my blood counts are most likely to drop during the second week. Use precautions by staying away from sick people and crowds, be careful about eating fresh fruits or vegetables at a restaurant because they may not have been cleaned thoroughly, and watch that my temperature never hits 100.5, or higher as that may indicate I have infections and my body may need IV antibiotics to fight it since my blood count may be too low. The final week is supposed to be my blood counts recovering and rebuilding so I can start the regiment again. She also gave me a prescription to have my blood count taken here in Safford before making the trip to Mesa for the next dose. If my blood counts drop low, they call that becoming neutropenic, which means you have to take even more precautions to not be exposed to germs and they may have to do infusions before I can start the next round or treatment. Following Dr. C, Mike, the pharmacist came in, just like he had done when we first start the Taxol, but this time he had an apprentice who was practicing telling me all of the side effects of each drug. I stumped him with a few questions, which Mike immediately jumped in to clarify. Basically they covered what Dr. C had already said, but with a little more detail.
Before I get started on the infusion series, let me take a minute to explain how chemotherapy works. Chemotherapy drugs basically damage cells by keeping them from dividing, thereby stopping cancerous cells from growing. If cells can't divide, they die. Normal cells control how quickly they divide and stop dividing when they run into other like cells; cancerous cells have lost the ability to stop themselves from continuing to divide, so they divide rapidly and out of control, not stopping, therefore creating clusters of cancerous cells or tumors. Chemotherapy drugs damage RNA and DNA that tell cells how to copy themselves. Side effects are caused because chemotherapy drugs kill rapidly dividing cells, both good and bad. The good ones will grow back, but the hope is the chemotherapy drugs kill all the bad cells by preventing them from dividing and they can't grow back. Normal cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowels, and the hair follicles. Losing the good cells in these areas can result in low blood counts, mouth sores, nausea, diarrhea, hair loss and other common side effects.
So, from our appointment with Dr. C, we headed to the 3rd floor for infusion. Cheryl was my nurse, and together we decided to try to run the meds as prescribed and watch for reaction. There were so many now, and they weren't known to be as harsh going in as the Taxol. First, there were now three pre-meds before the chemo. We started with Dexamethasone, the steroid drip they started me on when I first started the Taxol. This helps stop allergic reactions and helps with the nausea. That was a 15 minute drip. At the same time, I received Zofran for nausea, also a 15 minute drip. Both were accompanied by Emend, a 20 minute drip also used for nausea. My IV pole and tubes coming down now looked like a juggled mess. All three pre-meds ran at the same time, but once they were finished, there was a 30 minute wait before starting the three chemo drugs, which have to be run separately. The pre-meds went like clockwork with no problems whatsoever. After our 30 minute wait period, we started the first new chemo drug called 5-FU, or Fluorouracil. The most common (occurring in more than 30% of patients) side effects of 5-FU include diarrhea (I have lots of experience with that from the Taxol), nausea, mouth sores, poor appetite and taste changes--metallic taste, watery eyes, sensitivity to light, and low blood counts. The 5-FU finished in 15 minutes and we were on to drug number 2, Adriamycin, or Doxorubicin. Adriamycin is a red drug (some call it the Red Devil) that must stayed covered to avoid light so they bring it out covered in a green plastic bag which hangs over the IV drip bag as it goes in. It only takes 15 minutes to run as well, but there are some additional dangers and side effects with this drug. First, you are limited on the amount of Adriamycin you can receive in a lifetime. Second, this is the drug that can damage your heart, though it is rare. This is also the drug than raises your risk of developing leukemia, even years later. The other different thing about this drug is there are early side effects, peeing red, which I did, as well as the others mentioned above, and later side effects, that happen within two weeks, which are the lower blood counts. The infusion went without incident and we were on to the third and final drug, Cytoxan, or Cyclophosphamide, which required a full one hour to infuse. Cytoxan's major side effects are what have already been mentioned, but mostly low blood counts with your white and red blood cells and platelets decreasing. This drug also carries a slight risk of developing leukemia.
So that was it. Between the pre-meds and the chemotherapy meds, I had an IV pole full of infusion tubes running all over the place. Though we ran everything at normal speeds, just all of the changing and hooking up takes additional time. By the time everything took place, we were still behind schedule and I missed my 1:30 appointment with Dr. Matt and was late to my 3 o'clock sleeve-fitting appointment. It had definitely been a long day, but I was feeling pretty good, better than when I receive the Taxol.
We quickly drove to our next appointment to be fitted for a sleeve and glove for my right arm, which had started to experience some slight swelling. I'm so scared of developing lymphedema that I want to make sure I have a sleeve. The technician fitting me explained that I should be wearing the sleeve when traveling, especially anytime my ears are going to pop, which they always do in the Superior Mountains between Mesa and Safford. She put the sleeve and glove on and I wanted to cry. I suddenly looked like a burn victim. Here was another sign I was never really going to be my normal self again. It was tough handling it so I was glad it didn't take long. Preston had met up with us and he and Greg assured me it was hardly noticeable, which was nice, but still hard to take. By the time we made a quick stop at Costco, I was done. I still felt okay, but knew we needed to head home. By Globe, I was peeing red already and by the time we were home, I was feeling a little woozy. It was going to be an whole new experience on these drugs.
Starting Friday morning, for the first time ever, I had to take Dexamethasone twice a day for the first three days following infusion. Mike, the pharmacist, said it would continue to help with reactions, but would also give me energy and may keep me awake. I worked Friday as normal and headed out to Relay for Life with Greg about 5 PM.
RELAY FOR LIFE: Once again, we weren't sure what to expect when we first arrived. There were tents set up on the inside and outside of a make-shift track at the fairgrounds. I saw Lisa, my former student, who seemed to be in charge of the survivors. She signed me in, gave me my packet and then Greg and I wandered around looking while waiting for the official beginning and the Survivors' Lap to start the race. We had met up with Cindy Stahl, a friend and cancer survivor, as well as Carolyn Hopkins, also a survivor, so luckily I didn't feel quite as alone. I was still the only bald one out there. All of these other people were truly survivors and not in the middle of their fight like I was. As the Survivor's Lap began, I was shocked to find myself fighting tears within the first quarter of the track. What the heck! Why was I crying? It was actually way more emotional than I ever would have expected. All of these people were clapping to honor us as we circled the track and all I could do was think about how much I didn't want to be there. I didn't want to be a survivor, I didn't want to have cancer, and walking that first lap brought all of the realization of my world right into my face. I know that sounds crazy, but you sometimes just get so involved in doing all the treatments, doing all the things you're supposed to be doing, that you don't face the idea that YOU HAVE CANCER until you come face-to-face with the fact in a moment like that. After the first lap, care-givers joined the survivors so Greg and I walked hand-in-hand around the track one more time as I fought tears again.
Following the laps, we hung around walking some for the next hour and a half before heading home for a little while to rest before I gave my speech at the lighting of the luminarias. I needed to take my steroid before it got too late and I was tired and wanted to put my feet up. They were still very numb and Mike said they might remain numb from the Taxol for several more weeks. By 9 we headed back out. As we were waiting by the stage for the speeches to start, I became aware that during the speeches and the lighting of the luminarias, everyone stopped walking and came to the stage to listen. That was suddenly scary. There were three of us who were going to talk and I was going first, followed by another survivor then a care-giver of a survivor. As I went on stage, I said a quick prayer for help in being inspirational, and then I started and delivered the following message. Greg taped in and uploaded it to Facebook if you want to see it live (though I messed up a bit and ad-libbed a lot).
RELAY FOR LIFE SPEECH:
Hi, my name is Susan Lindsey and I’m in the middle of being treated for Stage 3 Breast Cancer. My diagnosis was in November when they thought I had what they called DCIS--”It’s a simple pre-cancer breast cancer,” they told me. “Easy to treat and nothing to worry about.”
At the end of November during my lumpectomy, instead of DCIS, they found a 4 CM invasive tumor. That was followed by discovering I also had tumors in my sentinel and axillary lymph nodes, one in my mammary lymph node and most surprisingly a 12 CM tumor in my abdomen which would also require a full hysterectomy
So, 3 surgeries in 5 weeks later, my life had changed a lot. It pretty much felt like an asteroid fell from the sky and hit me on the head. Where did my life go?
Tonight I’ve been asked to share with you what my support system has been and what you can do to help support cancer patients.
My first advice to friends and family of cancer patients is to have the courage to ask, even if you don’t know if they know that you know. Awkwardness is so hard and if you don’t ask, they’ll never really know that you care.
When I was first diagnosed, my husband, Greg and I, discussed how we were going to do this, what kind of support systems did we have and what were we going to need. I work for a school system, and the most important thing for me was I didn’t want awkwardness. I didn’t want to run into people who didn’t know if I knew they knew, so they were afraid to say anything to me. So avoid the awkwardness and ask how we are doing and let us know you care.
My second piece of advice--encourage cancer patients to find an easy way to communicate updates to everyone at once whether it is through email or blog or social media. If you're a family member, volunteer to help distribute the information. We as cancer patients have so much more to focus on.
I decided to start a public blog about my cancer. That has been the biggest help of all. I put all of my update information on the blog and then I ask my supporters to read it to find out the details so I don’t have to tell the details over and over again. That would be so depressing. Instead, after they read the details, I canI talk to people more about the support and love.
My third piece of advice, learn as much as you can about the disease. I am an educator and a constant teacher. I’ve heard from the readers of my blog that they have learned so much about cancer that they never knew. They have had parents, siblings, friends who have suffered and even died from the disease, but they never had the understanding of the personal details of the disease or the emotions a cancer patient faces. You know we face chemo, but what is it and how does it work? What effects does it have on the body? As an educator, I’m really glad I have found a way to use my cancer to teach. People should know--the good, the bad and the ugly.
My last piece of advice is remember the backside of the marathon. When we are first diagnosed, when we are at the starting line of this race, everyone is there showing support and seeing what they can do. When we first start chemo, when we have surgeries, during all the important milestones, supporters are usually right there. But remember us during those long periods of treatment week after week. This is what I call the back side of the marathon where we feel like we are running alone. We know we have supporters, waiting at the finish line, but the back side of the race is the hardest part to stay positive. Check in on us during the backside of the marathon. Remind us you’re still thinking about us. This is a long journey.
I will end by sharing with you what motivates me to keep fighting, besides all my wonderful supporters. When I was first diagnosed, I adopted a phrase to help me get through this. “Don’t Waste Your Cancer.” At first, that can almost sound offensive, but for me, it was motivational. I didn’t have a choice whether I wanted to take this journey, but I do have a choice as to what I want to do with it. I don’t know why I got cancer, and it doesn’t really matter. It is what it is. What I try to focus on is what positive things I can now do with it since it is part of my life. I don’t have all those answers because I’m still in the middle of my fight and treatment. But I keep telling myself over and over--”Don’t Waste Your Cancer!” Make something good out of it. And that has kept me positive and motivated to keep going.
Thank you for being here tonight and for caring. Cancer is the hardest thing I’ve ever faced in my life, but knowing other people care, people you don’t even know personally--well, that really helps. Thank you.
So that was it. It was done. Despite the mess ups, hopefully I shared an inspiring message that will help others. I was glad I did it, but I was also ready to go home. After the other two finished their speeches, we exited the stage, stayed to watch a slide show, then we went home.
New Side Effects of the New Drugs: Friday had been a busy day, but Saturday I was curious about how the weekend was going to go. The first two things I noticed was feeling a bit dazed or confused, enough so that I didn't feel comfortable enough to drive. The second thing was I realized the chills I had been feeling since January must have been from the Taxol, but I was cold no more. In fact, the third thing I experienced was the strangest thing so far (other than peeing red of course). I get what I would call red flashes, not be be confused with hot flashes. Suddenly my neck and then my face turn bright red and I feel a burning from the inside out. I don't really break into a sweat, though there is a small glistening on my bald head, but it truly feels like I am on fire inside burning through my skin to the outside. It is short lived, but you can actually see the bright red of my neck and face. This ought to be fun at work. Goodness gracious--I'll scare people to death!
Saturday I had small spurts of energy as we did a few project around the house, our biggest accomplishment being a huge grocery shopping trip, something we desperately needed to do. We also did some yard work and actually swam for the first time this season. That was actually my first time submerging into a body of water since before my surgeries in January. The water temperature was 84 degrees and felt nice. I knew my chilly period was over when I could get in and out of the pool without freezing, but swimming with numb feet was quite a trip. Sunday was pretty much the same but I took my steroid later as we both slept in. I found quite a bit more energy, but I was very nauseated. All I could get down was some toast. I cleaned and reorganized some kitchen drawers and finally took a nausea pill. By early evening I was able to eat some soup but quickly noticed it had not taste. We finished the evening laying under the stars looking for satellites.
Tomorrow will be my first day without the steroids so we'll see how the work day goes. Starting on Thursday, my blood counts are supposed to be more affected as well. From here on out, these next three weeks we will be learning yet another Whole New World!
Last week, I received a phone call from Renee Davis, a co-worker, asking if I would speak at Safford's Relay for Life event scheduled for May 3rd. She wanted me to introduce myself, what type of cancer I have, share what type of support system I have, and what motivates me to get through this. The speech would be the day after my first chemo of phase II of this journey. Though I was worried about the effects the new drugs might have on me, I didn't hesitate to accept the invitation--something inside just told me to do it. She also asked me to attend the Survivors' dinner that Friday, the week before the event, which I agreed to do as well.
Friday, April 26th was the Survivors' Dinner, which was the same day I wrote about in my last blog when I had trouble making it through the work day. Despite having a rough day, Greg and I attended the dinner. Our children, Preston and Brooklyn, have both participated in past Relay for Life events, but Greg and I have never been a part of it, so we had no idea what to expect. Walking into the Survivors' Dinner was a new experience that brought many different feelings. The first thing I noticed was the same thing that bothers me when I go into the MD Anderson Cancer Center--I'm pretty much the youngest one there. Most of the other people my age at the center, as well as that night at the dinner, are caregivers attending with their parents who are being treated or, at the dinner, were the survivors. The second thing I noticed was I was the only person without hair. I guess the others have made it through their journey already and are truly survivors, whereas it felt like I was the only one there still in the middle of my fight.
As we sat through the dinner, I realized there was a whole other world of people in Safford that existed that I didn't really know, yet I was suddenly part of this world due to this horrible disease. We all shared that struggle in common, which now made us a group, whether we knew each other or not. One of my former students, Lisa, ran the dinner, and other former students and colleagues were also volunteers all there to honor and serve the survivors. We received purple T-shirts to wear to the relay as well as luminaria bags to decorate for the race. I began to hit my wall of exhaustion so Greg took me home shortly after the meal. I didn't know exactly what I was going to say at the relay, but I had a week to think about what information I could share that would truly make a difference for people to hear.
Prior to leaving for Mesa for my first chemo of part II, Monday through Wednesday were high stress days for me. I was working on finalizing a very important grant for school which we had been preparing for months. My feet had become worse than they had been in many weeks, and both Monday and Tuesday I had worked late finalizing the grant. By Wednesday, the grant deadline, it was in its final stage and all I needed to do was upload some changes and submit it. When technical glitches arose with the online application, I became more overwhelmed than usual. While I called the grant support help-line and I knew the issues would be resolved, I found myself stressing much more than I usually would be. I hated that. It's not like me. It was another reminder of the additional stress cancer can have on your life, even in a place where you are usually calm and collected. But it all worked out and the grant was submitted by 2PM, hours before it was due and by 4 we were heading to Mesa to spend the night before our early 7:30AM appointments started the next day.
Once we arrived in town, we spent the evening visiting with our friends, Paul and Diane, delivering a bon voyage gift for their travels to Ireland, a trip we strongly considered going on with them before my diagnosis last fall. They were great company and provided a good way to relax away the stress of the week before facing the next day. We returned to Preston's early to get a good night's sleep.
Chemo 1 Part II: The morning started with early labs. A new girl, Traci, accessed my port on the first shot since Heather wasn't there, so that was a relief. From there we went to the 2nd floor to meet with Dr. C. She explained the new drug regiment along with some side effects to watch for and the risks that come with the new drugs. We were done with Taxol, thank goodness, so hopefully the numbness in my feet with subside soon. But more importantly, hopefully the side effects of these new drugs won't be worse than numb feet. It was scary hearing about everything, but here were the basics on risks: 1) There is a 1% chance these drugs can affect my heart, which is why they did the EKG prior to starting any chemo. 2) These drugs can cause liver damage, so it is important to drink A LOT of water to keep the liver flushed. 3) These drugs have a 1% chance of causing leukemia. At that point I asked Dr. C. what other options we had and were there choices of drugs with treating breast cancer. She explained, besides the Taxol, two of the three new drugs were the most common and standard drug regiments given with breast cancer patients by most all breast oncologists. The third drug was a standard for MD Anderson as their research showed the three together, along with the regiment of Taxol I had already received, had the most positive results in fighting cancer. That is when you have to have faith in your doctor and believe she is doing the very best treatment for your case.
She then explained the side effects of the new three drugs. There can be nausea for the first 3-5 days, but they will give me medicines to control that. Starting on day 7, I will be most susceptible to infections because my blood counts are most likely to drop during the second week. Use precautions by staying away from sick people and crowds, be careful about eating fresh fruits or vegetables at a restaurant because they may not have been cleaned thoroughly, and watch that my temperature never hits 100.5, or higher as that may indicate I have infections and my body may need IV antibiotics to fight it since my blood count may be too low. The final week is supposed to be my blood counts recovering and rebuilding so I can start the regiment again. She also gave me a prescription to have my blood count taken here in Safford before making the trip to Mesa for the next dose. If my blood counts drop low, they call that becoming neutropenic, which means you have to take even more precautions to not be exposed to germs and they may have to do infusions before I can start the next round or treatment. Following Dr. C, Mike, the pharmacist came in, just like he had done when we first start the Taxol, but this time he had an apprentice who was practicing telling me all of the side effects of each drug. I stumped him with a few questions, which Mike immediately jumped in to clarify. Basically they covered what Dr. C had already said, but with a little more detail.
Before I get started on the infusion series, let me take a minute to explain how chemotherapy works. Chemotherapy drugs basically damage cells by keeping them from dividing, thereby stopping cancerous cells from growing. If cells can't divide, they die. Normal cells control how quickly they divide and stop dividing when they run into other like cells; cancerous cells have lost the ability to stop themselves from continuing to divide, so they divide rapidly and out of control, not stopping, therefore creating clusters of cancerous cells or tumors. Chemotherapy drugs damage RNA and DNA that tell cells how to copy themselves. Side effects are caused because chemotherapy drugs kill rapidly dividing cells, both good and bad. The good ones will grow back, but the hope is the chemotherapy drugs kill all the bad cells by preventing them from dividing and they can't grow back. Normal cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowels, and the hair follicles. Losing the good cells in these areas can result in low blood counts, mouth sores, nausea, diarrhea, hair loss and other common side effects.
So, from our appointment with Dr. C, we headed to the 3rd floor for infusion. Cheryl was my nurse, and together we decided to try to run the meds as prescribed and watch for reaction. There were so many now, and they weren't known to be as harsh going in as the Taxol. First, there were now three pre-meds before the chemo. We started with Dexamethasone, the steroid drip they started me on when I first started the Taxol. This helps stop allergic reactions and helps with the nausea. That was a 15 minute drip. At the same time, I received Zofran for nausea, also a 15 minute drip. Both were accompanied by Emend, a 20 minute drip also used for nausea. My IV pole and tubes coming down now looked like a juggled mess. All three pre-meds ran at the same time, but once they were finished, there was a 30 minute wait before starting the three chemo drugs, which have to be run separately. The pre-meds went like clockwork with no problems whatsoever. After our 30 minute wait period, we started the first new chemo drug called 5-FU, or Fluorouracil. The most common (occurring in more than 30% of patients) side effects of 5-FU include diarrhea (I have lots of experience with that from the Taxol), nausea, mouth sores, poor appetite and taste changes--metallic taste, watery eyes, sensitivity to light, and low blood counts. The 5-FU finished in 15 minutes and we were on to drug number 2, Adriamycin, or Doxorubicin. Adriamycin is a red drug (some call it the Red Devil) that must stayed covered to avoid light so they bring it out covered in a green plastic bag which hangs over the IV drip bag as it goes in. It only takes 15 minutes to run as well, but there are some additional dangers and side effects with this drug. First, you are limited on the amount of Adriamycin you can receive in a lifetime. Second, this is the drug that can damage your heart, though it is rare. This is also the drug than raises your risk of developing leukemia, even years later. The other different thing about this drug is there are early side effects, peeing red, which I did, as well as the others mentioned above, and later side effects, that happen within two weeks, which are the lower blood counts. The infusion went without incident and we were on to the third and final drug, Cytoxan, or Cyclophosphamide, which required a full one hour to infuse. Cytoxan's major side effects are what have already been mentioned, but mostly low blood counts with your white and red blood cells and platelets decreasing. This drug also carries a slight risk of developing leukemia.
So that was it. Between the pre-meds and the chemotherapy meds, I had an IV pole full of infusion tubes running all over the place. Though we ran everything at normal speeds, just all of the changing and hooking up takes additional time. By the time everything took place, we were still behind schedule and I missed my 1:30 appointment with Dr. Matt and was late to my 3 o'clock sleeve-fitting appointment. It had definitely been a long day, but I was feeling pretty good, better than when I receive the Taxol.
We quickly drove to our next appointment to be fitted for a sleeve and glove for my right arm, which had started to experience some slight swelling. I'm so scared of developing lymphedema that I want to make sure I have a sleeve. The technician fitting me explained that I should be wearing the sleeve when traveling, especially anytime my ears are going to pop, which they always do in the Superior Mountains between Mesa and Safford. She put the sleeve and glove on and I wanted to cry. I suddenly looked like a burn victim. Here was another sign I was never really going to be my normal self again. It was tough handling it so I was glad it didn't take long. Preston had met up with us and he and Greg assured me it was hardly noticeable, which was nice, but still hard to take. By the time we made a quick stop at Costco, I was done. I still felt okay, but knew we needed to head home. By Globe, I was peeing red already and by the time we were home, I was feeling a little woozy. It was going to be an whole new experience on these drugs.
Starting Friday morning, for the first time ever, I had to take Dexamethasone twice a day for the first three days following infusion. Mike, the pharmacist, said it would continue to help with reactions, but would also give me energy and may keep me awake. I worked Friday as normal and headed out to Relay for Life with Greg about 5 PM.
RELAY FOR LIFE: Once again, we weren't sure what to expect when we first arrived. There were tents set up on the inside and outside of a make-shift track at the fairgrounds. I saw Lisa, my former student, who seemed to be in charge of the survivors. She signed me in, gave me my packet and then Greg and I wandered around looking while waiting for the official beginning and the Survivors' Lap to start the race. We had met up with Cindy Stahl, a friend and cancer survivor, as well as Carolyn Hopkins, also a survivor, so luckily I didn't feel quite as alone. I was still the only bald one out there. All of these other people were truly survivors and not in the middle of their fight like I was. As the Survivor's Lap began, I was shocked to find myself fighting tears within the first quarter of the track. What the heck! Why was I crying? It was actually way more emotional than I ever would have expected. All of these people were clapping to honor us as we circled the track and all I could do was think about how much I didn't want to be there. I didn't want to be a survivor, I didn't want to have cancer, and walking that first lap brought all of the realization of my world right into my face. I know that sounds crazy, but you sometimes just get so involved in doing all the treatments, doing all the things you're supposed to be doing, that you don't face the idea that YOU HAVE CANCER until you come face-to-face with the fact in a moment like that. After the first lap, care-givers joined the survivors so Greg and I walked hand-in-hand around the track one more time as I fought tears again.
Following the laps, we hung around walking some for the next hour and a half before heading home for a little while to rest before I gave my speech at the lighting of the luminarias. I needed to take my steroid before it got too late and I was tired and wanted to put my feet up. They were still very numb and Mike said they might remain numb from the Taxol for several more weeks. By 9 we headed back out. As we were waiting by the stage for the speeches to start, I became aware that during the speeches and the lighting of the luminarias, everyone stopped walking and came to the stage to listen. That was suddenly scary. There were three of us who were going to talk and I was going first, followed by another survivor then a care-giver of a survivor. As I went on stage, I said a quick prayer for help in being inspirational, and then I started and delivered the following message. Greg taped in and uploaded it to Facebook if you want to see it live (though I messed up a bit and ad-libbed a lot).
RELAY FOR LIFE SPEECH:
Hi, my name is Susan Lindsey and I’m in the middle of being treated for Stage 3 Breast Cancer. My diagnosis was in November when they thought I had what they called DCIS--”It’s a simple pre-cancer breast cancer,” they told me. “Easy to treat and nothing to worry about.”
At the end of November during my lumpectomy, instead of DCIS, they found a 4 CM invasive tumor. That was followed by discovering I also had tumors in my sentinel and axillary lymph nodes, one in my mammary lymph node and most surprisingly a 12 CM tumor in my abdomen which would also require a full hysterectomy
So, 3 surgeries in 5 weeks later, my life had changed a lot. It pretty much felt like an asteroid fell from the sky and hit me on the head. Where did my life go?
Tonight I’ve been asked to share with you what my support system has been and what you can do to help support cancer patients.
My first advice to friends and family of cancer patients is to have the courage to ask, even if you don’t know if they know that you know. Awkwardness is so hard and if you don’t ask, they’ll never really know that you care.
When I was first diagnosed, my husband, Greg and I, discussed how we were going to do this, what kind of support systems did we have and what were we going to need. I work for a school system, and the most important thing for me was I didn’t want awkwardness. I didn’t want to run into people who didn’t know if I knew they knew, so they were afraid to say anything to me. So avoid the awkwardness and ask how we are doing and let us know you care.
My second piece of advice--encourage cancer patients to find an easy way to communicate updates to everyone at once whether it is through email or blog or social media. If you're a family member, volunteer to help distribute the information. We as cancer patients have so much more to focus on.
I decided to start a public blog about my cancer. That has been the biggest help of all. I put all of my update information on the blog and then I ask my supporters to read it to find out the details so I don’t have to tell the details over and over again. That would be so depressing. Instead, after they read the details, I canI talk to people more about the support and love.
My third piece of advice, learn as much as you can about the disease. I am an educator and a constant teacher. I’ve heard from the readers of my blog that they have learned so much about cancer that they never knew. They have had parents, siblings, friends who have suffered and even died from the disease, but they never had the understanding of the personal details of the disease or the emotions a cancer patient faces. You know we face chemo, but what is it and how does it work? What effects does it have on the body? As an educator, I’m really glad I have found a way to use my cancer to teach. People should know--the good, the bad and the ugly.
My last piece of advice is remember the backside of the marathon. When we are first diagnosed, when we are at the starting line of this race, everyone is there showing support and seeing what they can do. When we first start chemo, when we have surgeries, during all the important milestones, supporters are usually right there. But remember us during those long periods of treatment week after week. This is what I call the back side of the marathon where we feel like we are running alone. We know we have supporters, waiting at the finish line, but the back side of the race is the hardest part to stay positive. Check in on us during the backside of the marathon. Remind us you’re still thinking about us. This is a long journey.
I will end by sharing with you what motivates me to keep fighting, besides all my wonderful supporters. When I was first diagnosed, I adopted a phrase to help me get through this. “Don’t Waste Your Cancer.” At first, that can almost sound offensive, but for me, it was motivational. I didn’t have a choice whether I wanted to take this journey, but I do have a choice as to what I want to do with it. I don’t know why I got cancer, and it doesn’t really matter. It is what it is. What I try to focus on is what positive things I can now do with it since it is part of my life. I don’t have all those answers because I’m still in the middle of my fight and treatment. But I keep telling myself over and over--”Don’t Waste Your Cancer!” Make something good out of it. And that has kept me positive and motivated to keep going.
Thank you for being here tonight and for caring. Cancer is the hardest thing I’ve ever faced in my life, but knowing other people care, people you don’t even know personally--well, that really helps. Thank you.
So that was it. It was done. Despite the mess ups, hopefully I shared an inspiring message that will help others. I was glad I did it, but I was also ready to go home. After the other two finished their speeches, we exited the stage, stayed to watch a slide show, then we went home.
New Side Effects of the New Drugs: Friday had been a busy day, but Saturday I was curious about how the weekend was going to go. The first two things I noticed was feeling a bit dazed or confused, enough so that I didn't feel comfortable enough to drive. The second thing was I realized the chills I had been feeling since January must have been from the Taxol, but I was cold no more. In fact, the third thing I experienced was the strangest thing so far (other than peeing red of course). I get what I would call red flashes, not be be confused with hot flashes. Suddenly my neck and then my face turn bright red and I feel a burning from the inside out. I don't really break into a sweat, though there is a small glistening on my bald head, but it truly feels like I am on fire inside burning through my skin to the outside. It is short lived, but you can actually see the bright red of my neck and face. This ought to be fun at work. Goodness gracious--I'll scare people to death!
Saturday I had small spurts of energy as we did a few project around the house, our biggest accomplishment being a huge grocery shopping trip, something we desperately needed to do. We also did some yard work and actually swam for the first time this season. That was actually my first time submerging into a body of water since before my surgeries in January. The water temperature was 84 degrees and felt nice. I knew my chilly period was over when I could get in and out of the pool without freezing, but swimming with numb feet was quite a trip. Sunday was pretty much the same but I took my steroid later as we both slept in. I found quite a bit more energy, but I was very nauseated. All I could get down was some toast. I cleaned and reorganized some kitchen drawers and finally took a nausea pill. By early evening I was able to eat some soup but quickly noticed it had not taste. We finished the evening laying under the stars looking for satellites.
Tomorrow will be my first day without the steroids so we'll see how the work day goes. Starting on Thursday, my blood counts are supposed to be more affected as well. From here on out, these next three weeks we will be learning yet another Whole New World!
Tuesday, April 30, 2013
Chemo Marathon 1 Ends as Chemo Marathon 2 Begins...............
4/29/13--Monday--Day 198--Halfway Through Chemo
As I ended my last post, I was hoping to postpone chemo #10 as the numbness in my feet had become quite severe and my fatigue had built to a point where I finally had to leave work early for the first time ever. I called the doctor's clinic Wednesday but Dr. C was out for the week, being replaced by Dr. B (kind of funny) or Dr. Bahadur. I explained that Dr. C said to stop for a week if the numbness was becoming too intense. The nurse returned my call saying Dr. B wanted to proceed with chemo, or at least labs as well as have me see Michelle, Dr. C's assistant, so we headed for Mesa the next morning, April 11th. Michelle's recommendation to continue the chemo, despite the severe numbness, seemed a contradiction to what I heard Dr. C say when we postponed chemo #6, but at that point, I was frustrated and not going to argue. I figured I had three more Taxol treatments to go so I would just get through them hoping for the best.
Each time I have chemo, I now have a certain nurse, Heather, access my port. I'm beginning to feel quite special between Heather and Cheryl. Heather works in the lab every other Thursday, and on the opposite Thursdays works on the infusion floor. For weeks it was taking two, three and even four attempts by different nurses to access my port. Thank goodness for the numbing cream I put on in Globe, an hour before labs. Heather would usually be called to assist and would be successful accessing my port the first time every time. She finally said to only have her access it, whether she was in the lab or on the chemo floor because it wasn't fair I was having to get stuck multiple times each time. She has been super wonderful, and up to now, hasn't missed yet.
After she accessed my port for chemo #9, the blood flow seemed slow and a bit sticky so they packed the port with a syringe full of Hepburn and let it sit while my labs processed. By the time I was ready for chemo, it was flowing normal again. As we started with chemo #10, the port was having the same issues, so after a flush of Hepburn, Cheryl decided to do what they kindly refer to as a "Rotor Rooter" before I left after chemo #10. That is a special medication they inject into the port to eat away the gunk that may be built up in the port. I figured with my protein S deficiency, maybe my blood is thicker than normal and has more tendency to build up in the port. Whatever it was, since I was "Rotor Rootered" I have had no problems with my port flowing well.
Cheryl ran chemo #10 super slow again and I had no reaction, thank goodness. It makes for a long day, but not reacting makes it time well spent. Following chemo I stayed the night at my Aunt Mary's with my sister, Sharon, and her husband, Harry, who were still here from Michigan. Greg went home as he was way behind on some of his website work. It has been tough for him and I both to keep up with our workload when we are only working four, and sometimes three-day work-weeks.
Friday morning Sharon, Harry and I headed to Cottonwood. My dad had decided that since my sister was here, it might be a good time to go through my mom's closets and drawers as we have not touched anything of hers since she died last July. I agreed but I knew I was only going to have so much energy so I would do what I could. What I didn't expect is the onset of diarrhea. I had had some weeks earlier, but it passed quickly as I hoped this would too. It was very draining on a body that didn't have much reserve energy to begin with. By the time we finished for the day Friday, I was beat, but we had made it through mom's closet and bedroom drawers. Saturday we started on the extra bedroom closet and drawers but after the first section, I was down for the count. When I hit that wall of exhaustion, I don't even feel like I have the energy to move my body. I laid on the bed and watched as Sharon went through the rest of the clothes. It seemed trips to the bathroom was all I could muster so most of the day Saturday was spent resting in between small spurts of energy where I would help with a few things then sit or lay down awhile.
A lot of people who love and care deeply about me have been critical about me trying to do too much. That weekend was a perfect example of why they don't need to worry, because when my body needs to stop, it stops and down I go for a bit. It isn't really a decision of mine to push on or not because my body just stops. It's the first time in my life where I've experience fatigue winning over willpower, no matter what. I do know I can't stop my life, or trying to live it, for cancer. I would rather face fatigue than stop living and give in to cancer completely dominating my life. Maybe that's part of why continuing to work has played such an important part of my mental attitude. I have learned to be cautious, approaching activities now with the realization that I may not complete them, and that's okay, but it's also okay to try them.
Sunday I felt better. Sharon and Harry drove me to Apache Lake, conveniently located half way between Cottonwood and Safford. Greg met us there with the boat figuring we might as well try a day-trip at the lake since we had to drive past it anyway. Sharon went on the boat with us as I drove and stay under the canopy the whole day. I was pleased that while the diarrhea was looming in the background, it stayed at bay while we were on the boat. Despite the warm temperature, I was still cold. Interestingly, I have stayed cold all the time ever since my surgery in January. Of course having numb feet only adds to the feeling of being cold, but even in the hot sun, I was cold. I stayed covered under the boat canopy with my floppy sun hat keeping my head warm, towels wrapped around my legs keeping them warm, and a cover-up over my body keeping it warm. Needless to say, it was easy to practice sun avoidance as Dr. C has instructed being all covered up to keep warm. Greg water skied, air chaired, and wake surfed as Sharon flagged and I drove. We ate lunch at the far west end by the dam and it wasn't until the trip back that I became nauseous, a feeling, I didn't know at the time, would stay with me for the next few weeks. I decided eating on the boat and then traveling back on rough water was something I would avoid in the future. I was glad I wasn't having to drive home as I took my first nausea pill in weeks.
The following days the fatigue continued though I managed to work each day. Thursday, chemo #11 went well with no reaction, though I was still fighting nausea, exhausting fatigue and diarrhea. I am convinced my body just reach a toxic level of the Taxol or something because it was the worse I've been through this whole chemo journey. Following chemo #11, our friend, Suzie, from Albuquerque, was celebrating her 50th birthday with a party and she and Mike desperately wanted us to attend. We hadn't been to Albuquerque since the Balloon Fiesta in early October, so it was important to try and go. We came home and slept after chemo #11 and headed out for the 6 hour trip to New Mexico Friday morning. At the party Friday night, I visited with many of my ballooning friends, but after socializing about an hour, I was exhausted. I went to our room to feed Sierra, our dog, and instantly fell asleep on the bed while she was eating. I don't know how long I slept before Greg came looking for me, but after that I was finished for the night.
Hitting that wall of fatigue has resulted in familiar symptoms now. First, according to Greg, I get exceptionally white and sometimes start trembling. I become very cold and shiver, even when covered in blankets. Then come the tears. For some reason, I start crying, even when I don't feel like crying. It usually passes quickly and it seems there is nothing I can do to avoid the steps.
I was glad I had began carrying nausea pills in my purse as it seemed to be a new addition to my life. While I was told I could take Imodium AD for the diarrhea, I chose not to in fear of then becoming constipated. The diarrhea had become mostly manageable so I just tried to increase my water intake to avoid becoming dehydrated.
Saturday morning after sleeping in, we went out to breakfast then to a matinee and that was it for my day. I was having trouble walking, was cold, and spent the rest of the day resting on the couch. By Sunday, however, I felt better, other than some nausea on the trip home.
The Monday through Wednesday following our trip to Albuquerque, after two weeks of feeling yucky, I finally felt better. I had a little more energy and life seemed more manageable though I still collapsed in the recliner every day after work. Thank goodness I have a job where I sit at a computer all day. I can't imagine working a physical job going through this, though I know many people do.
Last Thursday, April 25th finally came and with it came chemo #12, my final dose of Taxol. This marked the half way point of chemo treatments and the end of Taxol, which hopefully will mean the end of numb feet. Chemo #12 once again came with no reaction, but I had a tough day Friday following this dose. It was only the second time at work where I hit the wall and actually cried, something I have try desperately not to do at work. To make it worse, I was in the middle of a meeting with people from another department discussing an important change. We were on the phone with a vendor on speaker phone at Carol's desk where I had walked over to ask some questions. While standing, I became weak, shaky, and felt like I was going to pass out. I quickly took a chair from a co-worker so I could sit and listen and he relocated to my desk. I kept my back to the rest of the people in the office while looking at the phone and the computer screen at Carol's desk. That helped me hide the tears that suddenly came. Carol was so good. She inconspicuously handed me some tissue as I breathed through the episode drinking some water as it passed. Thankfully no one else in the room saw my face or knew what had happened or that I had cried.
This Thursday I start the next phase of chemo, which includes three drugs, but only once every three weeks for the next twelve weeks. At least we will save some trips to Mesa. The chemo drugs include Adriamycin, Cytoxan, and FU5. I have been told that while this combination of drugs won't cause numbness like the Taxol did, it will leave me more fatigued, make me more nauseous, and will have a much bigger affect on my blood numbers making me more susceptible to infection and becoming neutropenic. So far I have heard the second of the three weeks will be when I am most susceptible. Thursday will be an early and busy day so we will go over Wednesday evening. I have a 7:30 lab appt, 8:30 Dr. C appt to learn about this next phase, 9:30 new chemo drugs infusion appt, 2:00 Dr. Matt (Schlumbreck) follow-up appt. and a 3:00 fitting for a compression sleeve for my arm to help reduce the chances of lymphedema when I travel or do increased activity.
As I prepare for this next phase, I am excited to be halfway through the chemo regiment, but I am not looking forward to this being the harder half. I sometimes question how I will ever get back in shape after this whole treatment regiment is over. I feel useless, lazy, and disappointed in myselfe many times as I just don't have much endurance at all. Even this past weekend at home, I could help Greg some with a fence project we are doing, but then I would have to sit and rest.
But, we have made it through our first marathon and are starting our second of three total, radiation being the third. From what I've been told, this next race will be the worst of the three marathons we have to run, but I have already shown I can do 12 weeks, so I know I'll make it through this next 12 weeks. For now I am going to try to focus on the fact that we are halfway through the chemo!
As I ended my last post, I was hoping to postpone chemo #10 as the numbness in my feet had become quite severe and my fatigue had built to a point where I finally had to leave work early for the first time ever. I called the doctor's clinic Wednesday but Dr. C was out for the week, being replaced by Dr. B (kind of funny) or Dr. Bahadur. I explained that Dr. C said to stop for a week if the numbness was becoming too intense. The nurse returned my call saying Dr. B wanted to proceed with chemo, or at least labs as well as have me see Michelle, Dr. C's assistant, so we headed for Mesa the next morning, April 11th. Michelle's recommendation to continue the chemo, despite the severe numbness, seemed a contradiction to what I heard Dr. C say when we postponed chemo #6, but at that point, I was frustrated and not going to argue. I figured I had three more Taxol treatments to go so I would just get through them hoping for the best.
Each time I have chemo, I now have a certain nurse, Heather, access my port. I'm beginning to feel quite special between Heather and Cheryl. Heather works in the lab every other Thursday, and on the opposite Thursdays works on the infusion floor. For weeks it was taking two, three and even four attempts by different nurses to access my port. Thank goodness for the numbing cream I put on in Globe, an hour before labs. Heather would usually be called to assist and would be successful accessing my port the first time every time. She finally said to only have her access it, whether she was in the lab or on the chemo floor because it wasn't fair I was having to get stuck multiple times each time. She has been super wonderful, and up to now, hasn't missed yet.
After she accessed my port for chemo #9, the blood flow seemed slow and a bit sticky so they packed the port with a syringe full of Hepburn and let it sit while my labs processed. By the time I was ready for chemo, it was flowing normal again. As we started with chemo #10, the port was having the same issues, so after a flush of Hepburn, Cheryl decided to do what they kindly refer to as a "Rotor Rooter" before I left after chemo #10. That is a special medication they inject into the port to eat away the gunk that may be built up in the port. I figured with my protein S deficiency, maybe my blood is thicker than normal and has more tendency to build up in the port. Whatever it was, since I was "Rotor Rootered" I have had no problems with my port flowing well.
Cheryl ran chemo #10 super slow again and I had no reaction, thank goodness. It makes for a long day, but not reacting makes it time well spent. Following chemo I stayed the night at my Aunt Mary's with my sister, Sharon, and her husband, Harry, who were still here from Michigan. Greg went home as he was way behind on some of his website work. It has been tough for him and I both to keep up with our workload when we are only working four, and sometimes three-day work-weeks.
Friday morning Sharon, Harry and I headed to Cottonwood. My dad had decided that since my sister was here, it might be a good time to go through my mom's closets and drawers as we have not touched anything of hers since she died last July. I agreed but I knew I was only going to have so much energy so I would do what I could. What I didn't expect is the onset of diarrhea. I had had some weeks earlier, but it passed quickly as I hoped this would too. It was very draining on a body that didn't have much reserve energy to begin with. By the time we finished for the day Friday, I was beat, but we had made it through mom's closet and bedroom drawers. Saturday we started on the extra bedroom closet and drawers but after the first section, I was down for the count. When I hit that wall of exhaustion, I don't even feel like I have the energy to move my body. I laid on the bed and watched as Sharon went through the rest of the clothes. It seemed trips to the bathroom was all I could muster so most of the day Saturday was spent resting in between small spurts of energy where I would help with a few things then sit or lay down awhile.
A lot of people who love and care deeply about me have been critical about me trying to do too much. That weekend was a perfect example of why they don't need to worry, because when my body needs to stop, it stops and down I go for a bit. It isn't really a decision of mine to push on or not because my body just stops. It's the first time in my life where I've experience fatigue winning over willpower, no matter what. I do know I can't stop my life, or trying to live it, for cancer. I would rather face fatigue than stop living and give in to cancer completely dominating my life. Maybe that's part of why continuing to work has played such an important part of my mental attitude. I have learned to be cautious, approaching activities now with the realization that I may not complete them, and that's okay, but it's also okay to try them.
Sunday I felt better. Sharon and Harry drove me to Apache Lake, conveniently located half way between Cottonwood and Safford. Greg met us there with the boat figuring we might as well try a day-trip at the lake since we had to drive past it anyway. Sharon went on the boat with us as I drove and stay under the canopy the whole day. I was pleased that while the diarrhea was looming in the background, it stayed at bay while we were on the boat. Despite the warm temperature, I was still cold. Interestingly, I have stayed cold all the time ever since my surgery in January. Of course having numb feet only adds to the feeling of being cold, but even in the hot sun, I was cold. I stayed covered under the boat canopy with my floppy sun hat keeping my head warm, towels wrapped around my legs keeping them warm, and a cover-up over my body keeping it warm. Needless to say, it was easy to practice sun avoidance as Dr. C has instructed being all covered up to keep warm. Greg water skied, air chaired, and wake surfed as Sharon flagged and I drove. We ate lunch at the far west end by the dam and it wasn't until the trip back that I became nauseous, a feeling, I didn't know at the time, would stay with me for the next few weeks. I decided eating on the boat and then traveling back on rough water was something I would avoid in the future. I was glad I wasn't having to drive home as I took my first nausea pill in weeks.
The following days the fatigue continued though I managed to work each day. Thursday, chemo #11 went well with no reaction, though I was still fighting nausea, exhausting fatigue and diarrhea. I am convinced my body just reach a toxic level of the Taxol or something because it was the worse I've been through this whole chemo journey. Following chemo #11, our friend, Suzie, from Albuquerque, was celebrating her 50th birthday with a party and she and Mike desperately wanted us to attend. We hadn't been to Albuquerque since the Balloon Fiesta in early October, so it was important to try and go. We came home and slept after chemo #11 and headed out for the 6 hour trip to New Mexico Friday morning. At the party Friday night, I visited with many of my ballooning friends, but after socializing about an hour, I was exhausted. I went to our room to feed Sierra, our dog, and instantly fell asleep on the bed while she was eating. I don't know how long I slept before Greg came looking for me, but after that I was finished for the night.
Hitting that wall of fatigue has resulted in familiar symptoms now. First, according to Greg, I get exceptionally white and sometimes start trembling. I become very cold and shiver, even when covered in blankets. Then come the tears. For some reason, I start crying, even when I don't feel like crying. It usually passes quickly and it seems there is nothing I can do to avoid the steps.
I was glad I had began carrying nausea pills in my purse as it seemed to be a new addition to my life. While I was told I could take Imodium AD for the diarrhea, I chose not to in fear of then becoming constipated. The diarrhea had become mostly manageable so I just tried to increase my water intake to avoid becoming dehydrated.
Saturday morning after sleeping in, we went out to breakfast then to a matinee and that was it for my day. I was having trouble walking, was cold, and spent the rest of the day resting on the couch. By Sunday, however, I felt better, other than some nausea on the trip home.
The Monday through Wednesday following our trip to Albuquerque, after two weeks of feeling yucky, I finally felt better. I had a little more energy and life seemed more manageable though I still collapsed in the recliner every day after work. Thank goodness I have a job where I sit at a computer all day. I can't imagine working a physical job going through this, though I know many people do.
Last Thursday, April 25th finally came and with it came chemo #12, my final dose of Taxol. This marked the half way point of chemo treatments and the end of Taxol, which hopefully will mean the end of numb feet. Chemo #12 once again came with no reaction, but I had a tough day Friday following this dose. It was only the second time at work where I hit the wall and actually cried, something I have try desperately not to do at work. To make it worse, I was in the middle of a meeting with people from another department discussing an important change. We were on the phone with a vendor on speaker phone at Carol's desk where I had walked over to ask some questions. While standing, I became weak, shaky, and felt like I was going to pass out. I quickly took a chair from a co-worker so I could sit and listen and he relocated to my desk. I kept my back to the rest of the people in the office while looking at the phone and the computer screen at Carol's desk. That helped me hide the tears that suddenly came. Carol was so good. She inconspicuously handed me some tissue as I breathed through the episode drinking some water as it passed. Thankfully no one else in the room saw my face or knew what had happened or that I had cried.
This Thursday I start the next phase of chemo, which includes three drugs, but only once every three weeks for the next twelve weeks. At least we will save some trips to Mesa. The chemo drugs include Adriamycin, Cytoxan, and FU5. I have been told that while this combination of drugs won't cause numbness like the Taxol did, it will leave me more fatigued, make me more nauseous, and will have a much bigger affect on my blood numbers making me more susceptible to infection and becoming neutropenic. So far I have heard the second of the three weeks will be when I am most susceptible. Thursday will be an early and busy day so we will go over Wednesday evening. I have a 7:30 lab appt, 8:30 Dr. C appt to learn about this next phase, 9:30 new chemo drugs infusion appt, 2:00 Dr. Matt (Schlumbreck) follow-up appt. and a 3:00 fitting for a compression sleeve for my arm to help reduce the chances of lymphedema when I travel or do increased activity.
As I prepare for this next phase, I am excited to be halfway through the chemo regiment, but I am not looking forward to this being the harder half. I sometimes question how I will ever get back in shape after this whole treatment regiment is over. I feel useless, lazy, and disappointed in myselfe many times as I just don't have much endurance at all. Even this past weekend at home, I could help Greg some with a fence project we are doing, but then I would have to sit and rest.
But, we have made it through our first marathon and are starting our second of three total, radiation being the third. From what I've been told, this next race will be the worst of the three marathons we have to run, but I have already shown I can do 12 weeks, so I know I'll make it through this next 12 weeks. For now I am going to try to focus on the fact that we are halfway through the chemo!
Wednesday, April 10, 2013
So Much Has Happened........
4/9/13--Tuesday--Day 178--Two Guardian Angels Looking Out For Me!
Thank you, my friends, for hanging in there with me. I know I haven't posted in almost a month. So much has happened, not just with my cancer, but with other parts of my life. I've had three chemo treatments since my last post--chemo #7, #8 and #9. My feet have become numb to the point of possibly postponing my next treatment. My body also seems to be having harsher reactions to the Taxol as it builds up in my system. My exhaustion level is so much greater now as well. In addition, for the last three weeks, the health of my 99 year old grandmother, with whom I was very close, declined and she finally passed away the evening of April 6th, exactly two months prior to her 100th birthday.
First, let me backtrack to my chemo treatments. My dad joined us for the day for chemo #7. Before we started infusion, I had an appointment with Dr. Cianfrocca. I was glad my dad had the opportunity to meet her. He had met Dr. Matt and Dr. Byrum in the hospital during my surgeries but this was his first time meeting Dr. C, who has also treated his and my mom's best friend, Wanda, who lives down the street from them in Cottonwood.
For chemo #7 on 3/21/13, Cheryl was gone so I had a different nurse. She changed a few routines and I had a reaction during treatment. We had to laugh because this was the second time my dad had come to chemo and both times I had reactions. On that day, the nurse decided to push the Pepcid instead of dripping it. That means she injected it in the IV line instead of dripping it through an IV bag over a 15 minute period. Injecting it quickly caused dizziness and a headache. Once the Taxol started, about 30 minutes into the treatment, I had another reaction. She stopped it for a little bit until it passed and then started it at a slower rate. I seemed to be fine until she tried to bump it back up faster and the reaction returned, so we slowed it down once again.
Someone asked me what it means when I say I have a reaction and what does a chemo reaction feel like? There are two ways to describe it. First, think of a time when you were super scared and experienced an adrenaline rush. Your senses become overactive and you feel tingly all through your body. Imagine having that feeling for 20+ minutes. I think that's why I have to sleep after a reaction. My body is just exhausted. I would also describe it as what it must feel like to have ice cold water shot through your veins. You feel a cold, tingly sensation that starts at one end of your body and runs all the way through. Reactions sometimes come with extreme dizziness and a headache as well. Once the reaction subsides, my body feels exhausted and I just need to close my eyes. Usually by the time I leave chemo I am okay, but my body is tired.
The Saturday following chemo #7, my 99 year old grandmother was put in a Hospice home for the second time in a month. She had been healthy and mostly independent until recently. She was diagnosed with cancer in her stomach just a few months before my diagnosis. She underwent 25 sessions of radiation like a champ. They called her the iron lady and she left no room for any whining from me when I go through it. While the radiation shrunk the tumor in her tummy, it had grown back and was causing problems again. So on Sunday, we made another trip to Phoenix to visit her. She was already recovering and feeling better and we spent most of the day outside on the porch at the Hospice house visiting. By Sunday afternoon however, my feet were becoming more numb and I had lost much of my energy by the time we headed for home. I had trouble even walking to the car and slept most of the way home.
For chemo #8 on 3/28/13, my sister, Sharon, and her husband, Harry, from Michigan had come come to town due to my grandmother's declining health so they joined us at chemo. My feet had recovered some from the weekend, but were still getting a little more intense on the numbness. Cheryl was back. She also injected the Pepcid instead of dripping it because the symptoms I described from the last chemo were not known side effects of Pepcid. She injected the Pepcid slowly, over a 3 minute period, but once again, shortly after my head started spinning. She did some more in-depth research and sure enough, less than one percent of patients experience dizziness as a side effect of Pepcid. Just after she read that, I explained my headache, which had lodged between my right eyelid and the bridge of my nose. Sure enough, once again, less than one percent of patients have sudden and severe headaches shortly after receiving Pepcid. We waited the 30 minutes required after the Pepcid before starting the Taxol. She ran the Taxol at 150, the slower rate we had been using all this time, but my body reacted once again. She stopped it and within 20 minutes, the reaction subsided. When she restarted it, she ran it at an even slower rate, 125, and I was able to finish with no reactions.
I didn't recover well from chemo #8. Greg took me home Thursday night after seeing my grandma who had been released from her second Hospice house because she was doing so much better. On the way home, I just didn't feel well. All day Friday I could barely muster up enough energy to cook, eat, and clean up before returning back to the recliner. I had lots of plans to do many little projects around the house, but my body wasn't cooperating. Brooklyn was on spring break in Dallas with her aunt. I did manage to work to rearrange her flight so she could fly to Phoenix on Sunday instead of back to Idaho so she could see her great-grandmother for Easter. Saturday morning I had a little more energy, but not much. Most of the morning I stayed down, not having the energy to do much. By early afternoon, I felt a little better. I wanted to make iced sugar cookies to take to my dad, my grandma, and my aunt for Easter Sunday the next morning. That was a lot of work, but it was so very important to me. Easter was my mom's favorite holiday and she was the queen of iced sugar cookies. I wanted to make them to honor her and because they are also my dad and grandma's favorite cookie. Thank goodness I seemed to have more energy Saturday afternoon than I had had since before chemo. With the help of God, I made cookies in honor of my mother and our first Easter without her, and for my grandmother, who absolutely loves them.
We headed to Mesa Easter morning. Greg and I spent a wonderful Easter with my grandma, my dad, my Aunt Mary, my sister Sharon and brother-in-law Harry, Preston, and Brooklyn. Earlier in the day, my two cousins were there, Aunt Mary's sons Jeff and Sean. Later in the day my wonderful niece, Jennifer, and her two boys joined us as well. Strength-wise, it was a really hard day for me. Me feet had become progressively worse and my energy level was shot. It is SO very hard to want to do what you usually do to jump in and help, but not have the physical strength or endurance to really even move much. I enjoyed most of the day from the couch with my feet up and my head back, but I was happy to be there. My grandmother said it was the best day ever, and she smiled and laughed and enjoyed every moment. My daughter, who thought it would be the worst Easter ever because she would be away from us, had one of the her best Easters because she got to be home with family.
Chemo #9 came the Thursday following Easter. This time my daughter Brooklyn, who was home for the week from college in Idaho, joined me. It was nice to have her there. She has been away at school for all of the cancer stuff and has felt badly not being here to support me. During chemo, Cheryl was my nurse again and we decided to step back and completely do everything as slow as possible. We dripped the Pepcid over 15 minutes and I had no reactions. That was nice. We slowed the Taxol to 125, and while that extended the chemo time from 1 hour to 2.5 hours, I had no reactions! Yay! So that was the secret. We were simply going to have to go super slow with everything to avoid reactions at this point.
My sister was going to join me for chemo again, but my grandmother had had a bad night so she was staying to help my aunt. We went to my Aunt Mary's house after chemo, like always, but this time my grandmother looked like a completely different person. I was truly shocked. I stayed with her, held her hand and talked to her until the transport came to move her back to a Hospice house for the third and what I knew was the final time. Once she was settled in her new room, I spent the evening by her side along with Greg, Brooklyn, Aunt Mary, Dad, and Sharon and Harry. The shock of how quickly she had declined was confirmed when there was a shift change. The night staff came in and introduced themselves. Aunt Mary recognized Alec and said, "Hi Alec. Alec is one of the nurses who cared for grandma before." Three weeks prior Alec loved visiting with my grandma when she was first put in this Hospice facility. Alec didn't recognize grandma as she starred at the woman in the bed. Aunt Mary stood up and walked to the bed, and suddenly Alec gasped, put her hand over her heart, and said, "Emma! It's my sweet Emma!" when she finally realized the lady in the bed she was staring at was grandma, this vibrant lovable, amazing woman she had cared for three weeks ago. Goosebumps came over my body as I watched her sudden reaction and shock. That's just how much grandma had changed physically in just a few short days.
The next morning, my exhaustion level was incredibly high again, but I spend the morning in a chair with my feet up by my grandmother's side as she was finally resting peacefully. Unfortunately, by early afternoon, I hit that exhaustion wall again and I could stay no longer. I was so incredibly lucky though. My grandmother woke up for the first time all day. She instantly knew who I was calling me by name and we talked, smiled, hugged and truly said our heart-felt good-byes. I knew it was going to be the last time I saw her. I had a strong feeling she would pass the next day, Saturday. She told me, "You're going to make it through this Susan, I know you will" meaning the cancer and I confirmed with her that I would. She then said she loved me with all of her heart and I told her the same. Being her wonderfully polite self, she thanked me for the sugar cookies and smiled and told me how much she loved them. I was fighting the tears as I held her and looked into her eyes seeing her kind soul. Between the exhaustion and my emotions, the tears finally started flowing down my check as she and I said good-bye to each other for the final time. I moved to the chair out of her sight as I could no longer keep myself from crying. Brooklyn and Greg spent time telling her goodbye as well. Walking out of that room was one of the hardest things, but my body had truly had it and I knew I had to go home and rest. Saturday and Sunday we had an event in Tucson that we could not cancel and as much as I wanted to be with grandma, I also knew it was time for her to have her children at her side and Aunt Mary and my dad would be there where she needed them. Saturday night at 11:45 she took her last breath with Aunt Mary at her side, like always, as she went to heaven to join her husband, her son, Dick, my mom, my sister, Sandra, my cousin, Cheryl, all of her siblings and so many more who have passed before her. I love her so much and will miss her dearly. She and my mom were the two most important women in my life, and I lost both of them within 8 months at a time in my life when I needed them both so much.
I went back to Mesa Sunday evening and spend the evening and the next morning with my Aunt Mary, my dad, and my sister and brother-in-law. I needed to be by family and wish I had not had to leave Friday. But like the last 15 years, my Aunt Mary stood strong by my grandmother's side as she left this world. Aunt Mary is a saint. She has been by her dad's side as he died, and now by her mom's. She was with her brother and my mom as they died, and was with her partner, Bill as he died. She had dedicated the last 15 years of her life to taking care of her mother. My dad has been there to help relieve her, especially this past year, and they both have so much to be proud of in being there for their mother every single time she needed anything.
I returned to work today. I am strongly considering postponing chemo #10 scheduled for Thursday because my feet have become much worse. I will make the final decision tomorrow. My co-worker, Carol, asked if it could be related to the amount of stress I'm under. I hadn't thought about that until she said it, but it is possible. When I had to postpone chemo #6, it was the week my grandmother went in to the first Hospice house and the week we had to accept that the end was more near than we had hoped. Now the second time the numbness is worse is this stressful week of losing her. Hmmm, it's a thought. Who knows? The numbness this time is on the bottom of my feet rather than fully concentrated in my toes. It feels like that burning, stinging feeling you get when you slap your hand really hard on something. My left foot also feels like there is a large blister on the back part of my arch. I keep asking Greg to find it and pop it because I swear it's there, but he keeps saying there is nothing. We will see how they feel tomorrow and make the decision of whether to cancel this Thursday or not.
As this has all ended, I am going to believe the circle of bad events has come to a close. My grandmother died on April 6th, exactly two months, to the day, prior to her 100th birthday. But April 6th is also the day that one year ago, I had my foot surgery that ended up turning into RSD. So April 6th, 2012 started the chain reaction of bad events and I am going to believe that April 6th, 2013 has closed that circle. With my mom and now my grandma both up in heaven, my life surely has to be even more blessed with two Guardian Angels looking out for me.
Thank you, my friends, for hanging in there with me. I know I haven't posted in almost a month. So much has happened, not just with my cancer, but with other parts of my life. I've had three chemo treatments since my last post--chemo #7, #8 and #9. My feet have become numb to the point of possibly postponing my next treatment. My body also seems to be having harsher reactions to the Taxol as it builds up in my system. My exhaustion level is so much greater now as well. In addition, for the last three weeks, the health of my 99 year old grandmother, with whom I was very close, declined and she finally passed away the evening of April 6th, exactly two months prior to her 100th birthday.
First, let me backtrack to my chemo treatments. My dad joined us for the day for chemo #7. Before we started infusion, I had an appointment with Dr. Cianfrocca. I was glad my dad had the opportunity to meet her. He had met Dr. Matt and Dr. Byrum in the hospital during my surgeries but this was his first time meeting Dr. C, who has also treated his and my mom's best friend, Wanda, who lives down the street from them in Cottonwood.
For chemo #7 on 3/21/13, Cheryl was gone so I had a different nurse. She changed a few routines and I had a reaction during treatment. We had to laugh because this was the second time my dad had come to chemo and both times I had reactions. On that day, the nurse decided to push the Pepcid instead of dripping it. That means she injected it in the IV line instead of dripping it through an IV bag over a 15 minute period. Injecting it quickly caused dizziness and a headache. Once the Taxol started, about 30 minutes into the treatment, I had another reaction. She stopped it for a little bit until it passed and then started it at a slower rate. I seemed to be fine until she tried to bump it back up faster and the reaction returned, so we slowed it down once again.
Someone asked me what it means when I say I have a reaction and what does a chemo reaction feel like? There are two ways to describe it. First, think of a time when you were super scared and experienced an adrenaline rush. Your senses become overactive and you feel tingly all through your body. Imagine having that feeling for 20+ minutes. I think that's why I have to sleep after a reaction. My body is just exhausted. I would also describe it as what it must feel like to have ice cold water shot through your veins. You feel a cold, tingly sensation that starts at one end of your body and runs all the way through. Reactions sometimes come with extreme dizziness and a headache as well. Once the reaction subsides, my body feels exhausted and I just need to close my eyes. Usually by the time I leave chemo I am okay, but my body is tired.
The Saturday following chemo #7, my 99 year old grandmother was put in a Hospice home for the second time in a month. She had been healthy and mostly independent until recently. She was diagnosed with cancer in her stomach just a few months before my diagnosis. She underwent 25 sessions of radiation like a champ. They called her the iron lady and she left no room for any whining from me when I go through it. While the radiation shrunk the tumor in her tummy, it had grown back and was causing problems again. So on Sunday, we made another trip to Phoenix to visit her. She was already recovering and feeling better and we spent most of the day outside on the porch at the Hospice house visiting. By Sunday afternoon however, my feet were becoming more numb and I had lost much of my energy by the time we headed for home. I had trouble even walking to the car and slept most of the way home.
For chemo #8 on 3/28/13, my sister, Sharon, and her husband, Harry, from Michigan had come come to town due to my grandmother's declining health so they joined us at chemo. My feet had recovered some from the weekend, but were still getting a little more intense on the numbness. Cheryl was back. She also injected the Pepcid instead of dripping it because the symptoms I described from the last chemo were not known side effects of Pepcid. She injected the Pepcid slowly, over a 3 minute period, but once again, shortly after my head started spinning. She did some more in-depth research and sure enough, less than one percent of patients experience dizziness as a side effect of Pepcid. Just after she read that, I explained my headache, which had lodged between my right eyelid and the bridge of my nose. Sure enough, once again, less than one percent of patients have sudden and severe headaches shortly after receiving Pepcid. We waited the 30 minutes required after the Pepcid before starting the Taxol. She ran the Taxol at 150, the slower rate we had been using all this time, but my body reacted once again. She stopped it and within 20 minutes, the reaction subsided. When she restarted it, she ran it at an even slower rate, 125, and I was able to finish with no reactions.
I didn't recover well from chemo #8. Greg took me home Thursday night after seeing my grandma who had been released from her second Hospice house because she was doing so much better. On the way home, I just didn't feel well. All day Friday I could barely muster up enough energy to cook, eat, and clean up before returning back to the recliner. I had lots of plans to do many little projects around the house, but my body wasn't cooperating. Brooklyn was on spring break in Dallas with her aunt. I did manage to work to rearrange her flight so she could fly to Phoenix on Sunday instead of back to Idaho so she could see her great-grandmother for Easter. Saturday morning I had a little more energy, but not much. Most of the morning I stayed down, not having the energy to do much. By early afternoon, I felt a little better. I wanted to make iced sugar cookies to take to my dad, my grandma, and my aunt for Easter Sunday the next morning. That was a lot of work, but it was so very important to me. Easter was my mom's favorite holiday and she was the queen of iced sugar cookies. I wanted to make them to honor her and because they are also my dad and grandma's favorite cookie. Thank goodness I seemed to have more energy Saturday afternoon than I had had since before chemo. With the help of God, I made cookies in honor of my mother and our first Easter without her, and for my grandmother, who absolutely loves them.
We headed to Mesa Easter morning. Greg and I spent a wonderful Easter with my grandma, my dad, my Aunt Mary, my sister Sharon and brother-in-law Harry, Preston, and Brooklyn. Earlier in the day, my two cousins were there, Aunt Mary's sons Jeff and Sean. Later in the day my wonderful niece, Jennifer, and her two boys joined us as well. Strength-wise, it was a really hard day for me. Me feet had become progressively worse and my energy level was shot. It is SO very hard to want to do what you usually do to jump in and help, but not have the physical strength or endurance to really even move much. I enjoyed most of the day from the couch with my feet up and my head back, but I was happy to be there. My grandmother said it was the best day ever, and she smiled and laughed and enjoyed every moment. My daughter, who thought it would be the worst Easter ever because she would be away from us, had one of the her best Easters because she got to be home with family.
Chemo #9 came the Thursday following Easter. This time my daughter Brooklyn, who was home for the week from college in Idaho, joined me. It was nice to have her there. She has been away at school for all of the cancer stuff and has felt badly not being here to support me. During chemo, Cheryl was my nurse again and we decided to step back and completely do everything as slow as possible. We dripped the Pepcid over 15 minutes and I had no reactions. That was nice. We slowed the Taxol to 125, and while that extended the chemo time from 1 hour to 2.5 hours, I had no reactions! Yay! So that was the secret. We were simply going to have to go super slow with everything to avoid reactions at this point.
My sister was going to join me for chemo again, but my grandmother had had a bad night so she was staying to help my aunt. We went to my Aunt Mary's house after chemo, like always, but this time my grandmother looked like a completely different person. I was truly shocked. I stayed with her, held her hand and talked to her until the transport came to move her back to a Hospice house for the third and what I knew was the final time. Once she was settled in her new room, I spent the evening by her side along with Greg, Brooklyn, Aunt Mary, Dad, and Sharon and Harry. The shock of how quickly she had declined was confirmed when there was a shift change. The night staff came in and introduced themselves. Aunt Mary recognized Alec and said, "Hi Alec. Alec is one of the nurses who cared for grandma before." Three weeks prior Alec loved visiting with my grandma when she was first put in this Hospice facility. Alec didn't recognize grandma as she starred at the woman in the bed. Aunt Mary stood up and walked to the bed, and suddenly Alec gasped, put her hand over her heart, and said, "Emma! It's my sweet Emma!" when she finally realized the lady in the bed she was staring at was grandma, this vibrant lovable, amazing woman she had cared for three weeks ago. Goosebumps came over my body as I watched her sudden reaction and shock. That's just how much grandma had changed physically in just a few short days.
The next morning, my exhaustion level was incredibly high again, but I spend the morning in a chair with my feet up by my grandmother's side as she was finally resting peacefully. Unfortunately, by early afternoon, I hit that exhaustion wall again and I could stay no longer. I was so incredibly lucky though. My grandmother woke up for the first time all day. She instantly knew who I was calling me by name and we talked, smiled, hugged and truly said our heart-felt good-byes. I knew it was going to be the last time I saw her. I had a strong feeling she would pass the next day, Saturday. She told me, "You're going to make it through this Susan, I know you will" meaning the cancer and I confirmed with her that I would. She then said she loved me with all of her heart and I told her the same. Being her wonderfully polite self, she thanked me for the sugar cookies and smiled and told me how much she loved them. I was fighting the tears as I held her and looked into her eyes seeing her kind soul. Between the exhaustion and my emotions, the tears finally started flowing down my check as she and I said good-bye to each other for the final time. I moved to the chair out of her sight as I could no longer keep myself from crying. Brooklyn and Greg spent time telling her goodbye as well. Walking out of that room was one of the hardest things, but my body had truly had it and I knew I had to go home and rest. Saturday and Sunday we had an event in Tucson that we could not cancel and as much as I wanted to be with grandma, I also knew it was time for her to have her children at her side and Aunt Mary and my dad would be there where she needed them. Saturday night at 11:45 she took her last breath with Aunt Mary at her side, like always, as she went to heaven to join her husband, her son, Dick, my mom, my sister, Sandra, my cousin, Cheryl, all of her siblings and so many more who have passed before her. I love her so much and will miss her dearly. She and my mom were the two most important women in my life, and I lost both of them within 8 months at a time in my life when I needed them both so much.
I went back to Mesa Sunday evening and spend the evening and the next morning with my Aunt Mary, my dad, and my sister and brother-in-law. I needed to be by family and wish I had not had to leave Friday. But like the last 15 years, my Aunt Mary stood strong by my grandmother's side as she left this world. Aunt Mary is a saint. She has been by her dad's side as he died, and now by her mom's. She was with her brother and my mom as they died, and was with her partner, Bill as he died. She had dedicated the last 15 years of her life to taking care of her mother. My dad has been there to help relieve her, especially this past year, and they both have so much to be proud of in being there for their mother every single time she needed anything.
I returned to work today. I am strongly considering postponing chemo #10 scheduled for Thursday because my feet have become much worse. I will make the final decision tomorrow. My co-worker, Carol, asked if it could be related to the amount of stress I'm under. I hadn't thought about that until she said it, but it is possible. When I had to postpone chemo #6, it was the week my grandmother went in to the first Hospice house and the week we had to accept that the end was more near than we had hoped. Now the second time the numbness is worse is this stressful week of losing her. Hmmm, it's a thought. Who knows? The numbness this time is on the bottom of my feet rather than fully concentrated in my toes. It feels like that burning, stinging feeling you get when you slap your hand really hard on something. My left foot also feels like there is a large blister on the back part of my arch. I keep asking Greg to find it and pop it because I swear it's there, but he keeps saying there is nothing. We will see how they feel tomorrow and make the decision of whether to cancel this Thursday or not.
As this has all ended, I am going to believe the circle of bad events has come to a close. My grandmother died on April 6th, exactly two months, to the day, prior to her 100th birthday. But April 6th is also the day that one year ago, I had my foot surgery that ended up turning into RSD. So April 6th, 2012 started the chain reaction of bad events and I am going to believe that April 6th, 2013 has closed that circle. With my mom and now my grandma both up in heaven, my life surely has to be even more blessed with two Guardian Angels looking out for me.
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