7/31/13--Wednesday--Day 291--The Last Mile
Today was "dePORTation" day--the day they removed my port; in addition, it was Radiation Mapping day--the day they took the scans and all the measurement to develop my radiation plan. And while I've been anxiously awaiting this day, tonight I'm a mixed up jumble of emotions. Part of it, I'm sure, is from the anesthesia, and part of it is from the anxiety that comes with starting the next new leg of the race.
We purposely delayed the radiation mapping until after our California trip so I didn't have to go on vacation with tape markers on me. I was glad. We had a wonderful, and much needed, family vacation in California. We left the afternoon of Thursday, Aug. 18th and returned that Monday. So while it was a short trip, it was perfect. After picking up Preston and Yuri, Preston's girlfriend, in Phoenix, we made it to our hotel in Anaheim by 10 PM. Brooklyn flew in and took the shuttle to the hotel. Though the airlines lost her luggage, we managed the night and the first day knowing it would probably show up, which it did by Friday evening. We slept in Friday morning and made it to Disneyland around 10 AM taking advantage of the hotel shuttle. I was hoping to walk through the park, but after walking from the shuttle stop to the main gate, it was obvious I didn't have the strength or endurance to walk. It was frustrating, however, a few days before the trip, Brooklyn had injured her ankle bad enough to have to visit Urgent Care. The doctor told her she had a severe sprang which ran up into her calf, and he instructed her not to walk more than absolutely necessary. He gave her a brace but recommended a wheelchair in the parks, so we decided Brooklyn and I both would rent wheelchairs. While it was work for Greg and Preston to push us, they did end up benefiting as I also obtained a pass from guest services which kept us from waiting in lines. I was so grateful that Disney was willing to help with the pass as I would have been miserable without it. While I had a good time being there, my endurance was super low. I had just finished week two after my final chemo, which is the week with the most fatigue. Without the pass, I definitely would not have been able to enjoy much of the park at all. In fact, before sunset, I was exhausted. And, believe it or not, it was cold in July, and since I am always cold anyway, I was chilled. Greg saw the exhaustion in my face and decided it was time to be done for the day. Yuri and Preston stayed in the park while Greg maneuvered two of us in wheelchairs to the front gate. I pushed Brooklyn while Greg pushed me, so technically Greg pushed us both while I steered Brooklyn. We were quite the site but we managed. Saturday went about the same as we visited California Adventure followed by Sunday at Universal Studios. Each park let us skip the lines so we were able to get through the rides before my endurance gave out. By Sunday night I was truly exhausted and super glad we were heading home Monday morning. And, to make the trip even better, Brooklyn was driving home with us as she found a way to come home for another four weeks. Of course that meant five of us riding home in the Prius, but it was well worth it. It had been a much needed vacation, our first since New York in October when we first learned I had cancer. In fact, as we drove to Phoenix, we realized it was our first trip to Mesa for something other than cancer. It was really nice to get away.
After coming home Monday, we went back to Mesa Thursday for my final visit with Dr. Byrum, my breast surgeon. After six months, her job is finished and she turns cases over to medical oncologists, Dr. C. in my case. Dr. Byrum did have one more duty--to remove my port. She told me we could either do it before I started radiation or it would have to wait until after radiation was over. I definitely wanted it out before radiation started so we began working on scheduling it for the next week. After several attempts, we were finally able to schedule surgery to remove my port in the morning today, and my radiation mapping appointment for the afternoon today.
We stayed at my Aunt Mary's last night since we had to be at the hospital at 6 AM this morning. After checking in at Banner Hospital, the same place I had my other surgeries, we made our way up to the very familiar surgical area on the second floor. Once again, we were cared for by outstanding personnel. I can't tell you how wonderful the staff of this hospital is and always has been. They show genuine care and concern for their patients and families. Despite knowing I was in good hands and that this was a simple procedure, I couldn't help from being nervous. It was weird. There was nothing to be nervous about. This was a simple procedure. But this was the fourth time I had been in the surgery area in eight months and I guess it was getting to me a little bit.
Bonnie, my nurse, had a little difficulty finding my vein for my IV. That was hard to believe because I have always had great veins. That's one reason giving blood has always been super easy. But she said chemotherapy can be very hard on veins and make them hard to access. Great--another great perk of chemo. She was able to access a vein and start the IV. Then Jeremy for anesthesiology came in. He was super nice and explained he would only be putting me into a twilight sleep rather than under general anesthesia, which was good. I told him just make sure I didn't wake up. He gave me what he called "margaritas for breakfast" which made my nervousness suddenly disappear as he rolled me into the surgery room. I was feeling really good and much more relaxed as I visited with Dr. Bryum and Melissa, her assistant before Jeremy gave me the stronger medicine which put me to sleep. In a flash I was back awake and rolling into the recovery room. There were no stitches this time, only glue. That is interesting. Hopefully that will help the scar heal nicer. In an hour or so we were released and headed to IHOP for some breakfast.
When we returned to the cancer center, I was super tired falling asleep on Greg's shoulder as we waited for the appointment in radiation. Sue, Dr. Grade's assistant, saw us and took us back into an exam room early. She let me lay on the table, covered me in warm blankets, and turned the bright lights off while we waited. I immediately fell asleep for what seemed like an hour. When she came back in, I felt so much better. She talked to us about radiation and some of the potential side effects. As she explained things, it actually seemed really easy. I guess in comparison to what I've been through, it is really easy. She dispelled a lot of the myths we had heard, so that was a relief. She also explained how they figure out how much radiation to give a person. The mapping they would be doing today would give them measurements on my body and the organs in it through a CAT scan. The computer would calculate the amount of radiation my body would need to radiate the breast tissue without penetrating my other organs like my lungs. It would then divide that amount of radiation up into 30 fractional segments. This way each treatment would give me one of those fractional dosages. In the end, I would have all of the prescribed radiation, but given in safe doses.
After we discussed radiation, Sue took me back to change into a gown and wait for the technician. My wait was short before I was led into the room with the CAT scan machine. First they started by placing me on a sort of beanbag foam bead filled pad which was on top of the hard bench of the CAT scan machine. They positioned my right arm above my head and held the pad close around my sides while another machine began sucking the air out of the pad. This formed the foam beads in the pad around my body creating a hard mold of my body. This is what they would use each time I come in to place my body in the same position each time. At that point, Dr. Grade and another technician came in. As they talked about the treatment, I asked about the mammary gland tumor that was there on the PET scan and would the radiation cover that area. She assured me it would. Then Dr. Grade mentioned a new type of radiation treatment and if my insurance would approve it, it would take half the time. At first I thought that meant less than six weeks, but then she clarified and said no, it meant less time on the table during each treatment. The tech told me with the areas they were having to cover on me, the breast, the sentinel lymph area, the axillary lymph area and the mammary gland area, each treatment would take about an hour on the table. If my insurance would approve the new method, it would only be about 20 minutes on the table. They checked with my insurance and the new method was approved so they removed the mold they had just made, put both of my arms above my head, and made a new mold. This was followed by placing wires in all the areas they were targeting. And finally they moving me through the CAT scan machine multiple times as they took measurements.
The simulation was really challenging. It was hard to keep both of my arms up, my head turned sideways with my chin up, my right side propped up, and hold my breath on and off while maintaining that position for almost an hour. By the time we were finished, my neck, arms, and back were screaming. When we were almost finished, the tech used permanent marker and made marks in about five places then covered them with waterproof tape. This is what they do instead of tattooing. The tape will stay on the whole six weeks, so that will be interesting. If the marks come off, we have to go through this whole mapping process again, which wouldn't be good. While it is waterproof tape and can hold up to showers, I'm not allowed to swim anymore or soak in water. Plus, the chlorine or salt in pools will irritate the skin while getting radiation, so I guess my summer of swimming is over. The whole process took about 2 and a half hours and then we headed home.
I was glad my port was out, but it was hurting by the time we were driving home. I was glad we were starting the radiation process, as it is the final leg of the race, but the mapping had been harder to endure than I expected. I have a very high pain tolerance, but laying there with my arms stretched out above my head, my head turned, and my chin up being perfectly still for that long was painful. My arms and back ached and my right arm was swollen. Sue had confirmed what we had heard from Dr. Byrum the week before. The radiation was most likely going to make my lymphedema worse and it would most likely be permanent. My arm was swollen from the lymphedema already and by the time the mapping was done, it was even more swollen. These taped marks on my body for six weeks seemed odd and a little scary. I hope I can keep them on. We were also told that they really usually take five to ten business days to develop the radiation plan. Plus, Dr. Grade said the new method is a lot more work up front, but worth it for the patient. Now I don't know if they will be ready for me to start next Tuesday. Once the plan is ready, they have the MD Anderson in Houston review it and approve it. After that they will call me to start, so honestly, at this point, I have no idea when I will start, other than sometime in the next two weeks. Okay, so that's it for the complaining. In reality, everything today was good. My port is out, my radiation plan has been started, and we are on our way to being finished. Once I start radiation, I will only have six weeks of treatment left and my life will be back to semi-normal. I am so grateful for the quality of care I continue to receive, for the support from friends and family I continue to have, and for the progress I continue to make. And while emotionally I sometimes feel like I am on a roller coaster, I am glad we are finally getting to The Last Mile of this race.
Wednesday, July 31, 2013
Wednesday, July 17, 2013
Hairy Scary--Going to Work with No Cap........
7/17/13--Wednesday--Day 277--It's Just A Hair Thing.
As women, the way we look at ourselves physically seems to revolve a lot around either our weight or our hair. The thought of losing our hair seems unimaginable, at least it was to me. I remember the hours we spent before I lost my hair trying on wigs to get the perfect one that looked just like my real hair. It was perfect and I was sure I was going to wear it any time I left the house after I lost my hair so everything would stay normal. Then, after surgeries, hospital stays, chemo, and hair loss, hair just seems to lose its significance.
Like many others I've heard of, I wore my wig about three times and that was it. Lots of people have asked me why. This is really what it is for me. Once I lost my hair, I had to look in the mirror every morning and every night. I had to come to terms with what I saw. I had to be okay with what I was now, knowing it was temporary, but it was what it was. Every time I put the wig on, it was a constant reminder of what I used to look like, and what I no longer looked like, and what I wish I still looked like. I became an emotional wreck every time I put it on my head. You see, it puts in that mirror what you used to look like and you get all excited because you feel "pretty" again. But the down side is, you feel even uglier when it come off.
One night Greg and I went out to dinner with me wearing the wig. I felt normal again. No one around me knew anything and I looked great. But then, I had to come home and take it off. As soon as I took it off, and my bald head emerged, I cried all over again. Each time I put my wig on and then took it off, it was like losing my hair all over again. It was the one weakness that really got to me. It was a constant, in-my-face reminder of what pretty hair I used to have and then a sudden jerk back into reality of what I no longer had. So from that point on, I decided, emotionally, wearing the wig was a bad idea for me.
Instead of a wig, I embraced the idea of creating a whole new look for me. I bought super cute scarfs and hat all matching my outfits--thank goodness for the Boutique of Hope and Rita! At first, it was fun to take pictures and send them to my far-away friends each morning. Hearing back from them lifted my spirits and reassured me that I had created a cute look. My friends will never know the confidence they helped me build with those text messages. This look was different than who I used to be, and different than who I may be in the future, but it was who I am now. It was nice to feel good about who I was at that time rather than focusing on who I used to be or wanted to be. It didn't take long before I felt "pretty" again. The cute outfits with matching accessories and matching hats or scarfs made me smile and feel good about how I looked. I have a nice collection now and have felt very comfortable with my looks.
But I mentioned in my last blog, a week before my last chemo treatment, my hair and eyelashes started to grow somewhat rapidly. Once I received my last chemo treatment, it stopped, but I didn't lose what had grown. Just in the last few days, it has started growing once again. A question kept running through my head, "When will I feel comfortable not wearing a scarf or hat?" That is a tough questions. Do you wait until your hair grows long enough to fully cover your head? When do you take people to the next shock level of seeing you?
Living in Arizona, in July, it is HOT. Not warm or sort of hot, but downright HOT. I had started sweating under my hats. Since I wasn't comfortable showing my bald head, I couldn't take my cap off and wipe my head in front of people, especially at work. Plus, we were heading to the lake for the weekend. Up until now, I haven't posted many, if any, picture of myself without a cap of some kind. But at the lake, how was that going to work? So as I was packing for the lake trip, I decided to take a cap, but also to try to be brave and not wear it. If I could get a little sun on my super white head, maybe it would look better. If it was tan, maybe I would feel better about going without a hat. I didn't wear a hat at the lake at all. Greg posted several pictures of us on the lake and it was nice to have friends comment on how good we looked. It was easier to face it once he posted pictures. It was actually very liberating not having to worry about a hat all the time. I just enjoyed my time with my naked head.
After building my confidence over the weekend, Monday morning I woke up determined to just make the switch. I was going to go to work for the first time with no scarf or cap. I got ready and headed downstairs. Greg was really happy I decided to go without a cap, "You look beautiful," he told me reassuringly. I left the house totally confident and a little excited, but as I got closer to work, my body filled with anxiety. I called Greg in tears telling him I was turning around to come get my cap. "You look great. You'll be fine. Go. I'm locking the doors so you can't come back." I laughed through the tears that were now streaming down my face. How was I going to do this? I sat in the parking lot for what seemed like forever. I just couldn't go inside. What was I going to say to everyone? It was going to be a shock to everyone. After about ten minutes, just as I was deciding to start the car and go back home, a co-worker, Ann, pulled up and got out of her car. Without even thinking, I jumped out of my car knowing if I could just go inside with someone, it would be easier. "I'm going for the bald look," I said with a smile. Ann was so nice. I confessed that I was scared to go inside alone, so I was glad she had come along. We walked in together talking as we went. As I approached the doorway of the tech shop, I joked with the guys telling them to get ready to see me bald because I was going for the capless look. They were super sweet and joked back with me making me feel much better. Throughout the morning as different members from the building came in and out of my office, I made a joke each time partly because I was nervous and partly to help break the ice of an awkward situation. After about the fourth interaction, I was okay. I had done it. I was comfortable seeing people with a naked head. It was a nice relief not to feel like I had to wear a cap. It was another HUGE step in being okay with who I am now, no matter what I looked like.
So for the last three days, I've gone to work, into meetings with vendors, even out to lunch without anything covering my head other than the soft fuzzy layer of gray and black that is emerging from my scalp. I SO wish it wasn't showing so much gray. Everyone said it would come back black and curly, which I was excited about. Maybe as it fills in more, more black will come and cover the gray. But honestly, if it doesn't, it will be okay. As scary as it was, I'm glad I've overcome this hurdle and realized, It's Just A Hair Thing!
As women, the way we look at ourselves physically seems to revolve a lot around either our weight or our hair. The thought of losing our hair seems unimaginable, at least it was to me. I remember the hours we spent before I lost my hair trying on wigs to get the perfect one that looked just like my real hair. It was perfect and I was sure I was going to wear it any time I left the house after I lost my hair so everything would stay normal. Then, after surgeries, hospital stays, chemo, and hair loss, hair just seems to lose its significance.
Like many others I've heard of, I wore my wig about three times and that was it. Lots of people have asked me why. This is really what it is for me. Once I lost my hair, I had to look in the mirror every morning and every night. I had to come to terms with what I saw. I had to be okay with what I was now, knowing it was temporary, but it was what it was. Every time I put the wig on, it was a constant reminder of what I used to look like, and what I no longer looked like, and what I wish I still looked like. I became an emotional wreck every time I put it on my head. You see, it puts in that mirror what you used to look like and you get all excited because you feel "pretty" again. But the down side is, you feel even uglier when it come off.
One night Greg and I went out to dinner with me wearing the wig. I felt normal again. No one around me knew anything and I looked great. But then, I had to come home and take it off. As soon as I took it off, and my bald head emerged, I cried all over again. Each time I put my wig on and then took it off, it was like losing my hair all over again. It was the one weakness that really got to me. It was a constant, in-my-face reminder of what pretty hair I used to have and then a sudden jerk back into reality of what I no longer had. So from that point on, I decided, emotionally, wearing the wig was a bad idea for me.
Instead of a wig, I embraced the idea of creating a whole new look for me. I bought super cute scarfs and hat all matching my outfits--thank goodness for the Boutique of Hope and Rita! At first, it was fun to take pictures and send them to my far-away friends each morning. Hearing back from them lifted my spirits and reassured me that I had created a cute look. My friends will never know the confidence they helped me build with those text messages. This look was different than who I used to be, and different than who I may be in the future, but it was who I am now. It was nice to feel good about who I was at that time rather than focusing on who I used to be or wanted to be. It didn't take long before I felt "pretty" again. The cute outfits with matching accessories and matching hats or scarfs made me smile and feel good about how I looked. I have a nice collection now and have felt very comfortable with my looks.
But I mentioned in my last blog, a week before my last chemo treatment, my hair and eyelashes started to grow somewhat rapidly. Once I received my last chemo treatment, it stopped, but I didn't lose what had grown. Just in the last few days, it has started growing once again. A question kept running through my head, "When will I feel comfortable not wearing a scarf or hat?" That is a tough questions. Do you wait until your hair grows long enough to fully cover your head? When do you take people to the next shock level of seeing you?
Living in Arizona, in July, it is HOT. Not warm or sort of hot, but downright HOT. I had started sweating under my hats. Since I wasn't comfortable showing my bald head, I couldn't take my cap off and wipe my head in front of people, especially at work. Plus, we were heading to the lake for the weekend. Up until now, I haven't posted many, if any, picture of myself without a cap of some kind. But at the lake, how was that going to work? So as I was packing for the lake trip, I decided to take a cap, but also to try to be brave and not wear it. If I could get a little sun on my super white head, maybe it would look better. If it was tan, maybe I would feel better about going without a hat. I didn't wear a hat at the lake at all. Greg posted several pictures of us on the lake and it was nice to have friends comment on how good we looked. It was easier to face it once he posted pictures. It was actually very liberating not having to worry about a hat all the time. I just enjoyed my time with my naked head.
After building my confidence over the weekend, Monday morning I woke up determined to just make the switch. I was going to go to work for the first time with no scarf or cap. I got ready and headed downstairs. Greg was really happy I decided to go without a cap, "You look beautiful," he told me reassuringly. I left the house totally confident and a little excited, but as I got closer to work, my body filled with anxiety. I called Greg in tears telling him I was turning around to come get my cap. "You look great. You'll be fine. Go. I'm locking the doors so you can't come back." I laughed through the tears that were now streaming down my face. How was I going to do this? I sat in the parking lot for what seemed like forever. I just couldn't go inside. What was I going to say to everyone? It was going to be a shock to everyone. After about ten minutes, just as I was deciding to start the car and go back home, a co-worker, Ann, pulled up and got out of her car. Without even thinking, I jumped out of my car knowing if I could just go inside with someone, it would be easier. "I'm going for the bald look," I said with a smile. Ann was so nice. I confessed that I was scared to go inside alone, so I was glad she had come along. We walked in together talking as we went. As I approached the doorway of the tech shop, I joked with the guys telling them to get ready to see me bald because I was going for the capless look. They were super sweet and joked back with me making me feel much better. Throughout the morning as different members from the building came in and out of my office, I made a joke each time partly because I was nervous and partly to help break the ice of an awkward situation. After about the fourth interaction, I was okay. I had done it. I was comfortable seeing people with a naked head. It was a nice relief not to feel like I had to wear a cap. It was another HUGE step in being okay with who I am now, no matter what I looked like.
So for the last three days, I've gone to work, into meetings with vendors, even out to lunch without anything covering my head other than the soft fuzzy layer of gray and black that is emerging from my scalp. I SO wish it wasn't showing so much gray. Everyone said it would come back black and curly, which I was excited about. Maybe as it fills in more, more black will come and cover the gray. But honestly, if it doesn't, it will be okay. As scary as it was, I'm glad I've overcome this hurdle and realized, It's Just A Hair Thing!
Monday, July 15, 2013
Final Chemo Was The Most Challenging Of All.......
7/14/13--Sunday--Day 274--What A Stormy End, But The Sun Has Come Out.
I want to start this evening by paying tribute to you, the 150-190 loyal readers of this blog, who have supported me by reading my posts and sharing my story. Thank you for following my story through this blog as well as sharing it with others. It is so comforting to know that blogging about my experiences and feelings in dealing with breast cancer has truly helped people understand what I have gone through, and even more importantly, it has truly helped others who are going through it as well. That is so encouraging because I know I'm making something good out of this bad thing that has happend to me. That helps me so much and I believe I am a stronger person because of this blog and your support through reading it so thank you!
I'm sorry I didn't post about my last chemo until now. Honestly, it was a really rough journey and until it passed, I just didn't want to complain about it. Greg kept encouraging me to blog, but I just felt so horrible, and I didn't want to talk about it at all. Interestingly, I was really dreading this last treatment. Everyone kept saying, "Piece of cake. It's your last one. You can do this," but that's really like saying, "No problem. You only have to run through the fire one more time. You got this." I think the more people said it, the more frustrated I became. Treatment three was so hard. I just didn't want to do it again, final time or not. And sure enough, treatment three paled in comparison to treatment four. In fact, today marks day four of week two in the last chemo cycle and yesterday was finally the first day where I actually felt human again. Treatment four, my final round of of Cytoxan, Adriamycin, and 5-FU, took me down hard and made for a very long and challenging first week of final chemo.
It all started with my final chemo being scheduled for Wednesday, July 3rd since the cancer center would be closed for July 4th on Thursday. We drove over that morning to find the lab absolutely packed. Like me, I'm sure many of their Thursday patients were trying to squeeze into Wednesday because of the holiday. We started in the lab with Heather accessing my port. Unfortunately, that meant that not only was Cheryl going to be gone for my final treatment, but Heather was working lab that day so wouldn't be doing my infusion either. I was disappointed, but Heather was super nice and set me up with Traci for infusion. My port was cranky, as always, but this time it was clogged. Heather had to do the Rotor Rutor thing again, which meant putting a special solution in my port to eat away the gunky stuff so it would flow. That would throw us behind on getting lab results before we met with Dr. C., so we decided to have someone draw my labs from my arm while my port was "cooking". I guess that was good since that will be the way they draw my labs shortly anyways. Once chemo is over, there is no real reason to leave my port in, so soon my port will be removed and I'll go back to having labs drawn from my arm during my doctors visits.
It all worked out and before I knew it, we were up on the second floor meeting with Dr. C. Big questions for this visit included, "Why the heck was my hair suddenly growing?" Now I know when people think about cancer patients losing their hair, they think only of head hair, eye lashes, and eye brows. Keep in mind I lost absolutely all hair anywhere on my body. I lost all my arm and leg hair, all facial hair, I even lost all my nose hair. Now that was a funny one. I kept showing people my new bar trick--when I would pinch my nostrils together, they would stick until I pulled them apart. It was funny because you never really know the important role something as insignificant as nose hair plays until you lose it. But suddenly, during week three following treatment three, all my hair started growing. My head started feeling like a soft Q-Tip, I had fuzz all over my face, and I actually picked up a razor for the first time in months and shaved the little stubbles that showed on my legs. I was elated with what looked like hundreds of lower eyelashes that had started popping out, and encouraged as the inside thicker areas of my eyebrows started emerging as well. But if hair wasn't supposed to grow until chemo was over, how the heck was it growing so much now? And, the more important question, was it going to all fall out again after my final chemo four and have to start all over again? The answer--Dr. C. said hair is just so unpredictable and there really wasn't an explanation or prediction. So, the hair mystery began.
While the new hair growth was great news, chemo had to get one last punch in for my final treatment. I showed Dr. C. one of my toenails that the previous day had just started squirting out puss. Keep in mind, my feet are still mostly numb so I never felt pain or irritation. I just suddenly felt wetness between my big toe and the next one and looked down to find puss. After examining it, she put me on an antibiotic and told me there was a good chance I would lose that toenail and maybe others. Then she reassured me that toenail loss is not unusual with chemo. Really? In the last chemo treatment and just as everything is starting to rejuvenate, to regrow, and I'm going to lose toenails? I actually had to laugh. While it really wasn't funny, but more irritating and infuriating, I really did just have to laugh. It was just so ironic, so anticlimactic, so minuscule that it was actually funny. Whatever. At this point, really? What did it matter? I've lost just about everything other "pretty part" on my body. Of course I needed to lose toenails too. I was also frustrated with myself though. I had stopped doing artificial nails when I first started chemo after being advised by the doctor that they really do put you at risk for infection. I had never had pedicures or had my toenails done so I figured I would substitute getting pedicures to help me have a least one part on my body still represent some form of feminine. I had started having my toenails done (Greg too to show is support for me--but that's another story, lol) just before my surgery in January. Cheyanne, a friend who grew up with Preston, has been coming to our house to do our toenails throughout this whole ordeal. I knew everything was more clean and sterile since I wasn't going to a place where hundreds of people get their feet done. Cheyanne had been doing gel nails in different styles to represent breast cancer. I had had mine done only three times since January. It seems like this last time may have caused the problem, or maybe it didn't and it would have happened anyways, who know. All I know is now toenail loss was pretty imminent. Oh well, another story to tell.
Other answers Dr. C. was able to provide included Dr. Byrum, my breast surgeon, would be in charge of taking my port out. We will see her at the end of July and learn more about when that will be scheduled. Also, Dr. C. won't see me again until radiation is over so sometime the week of September 18th. Instead, I will see Dr. Grade every week through radiation. Finally, I asked if we were doing tumor markers for ovarian cancer, why had we not already started tumor markers for breast cancer? Dr. C. said there are no tumor markers for breast cancer. I was surprised. I guess mammograms and scans are the only way to really watch for breast tumors and I would be getting those about every six months. So that was it. With that we were headed upstairs for the final infusion.
Before heading up to the third floor, I went in to the Boutique of Hope to see my friend Rita. She had been so wonderful helping with hats and scarfs and I had grown to just adore her. I was disappointed to find her not there--she only works Thursdays--so I'll have to see her on my next doctors visit. So my Thursday friends all seemed to be gone for the day. Cheryl was on vacation, my friend Heather who was the doctors receptionist, was on vacation, Rita from the gift shop didn't work Wednesdays, and I would soon find out my two favorite volunteers, Sue and Kim, also didn't work Wednesdays.....hmmm I was missing celebrating with some of my favorite people who made me smile.
Up on the infusion floor, everyone was super busy as well. While we waited to be called back, Margo, one of our favorite nurses from my hospital stay, was working calling patients back. We hadn't seen Margo since my surgery. Our friends, Mike and Suzie, who had stayed at the hospital so much with us, had come for my last chemo. Margo instantly recognized the four of us sitting there and we were delighted to see her. It was like everything was full-circle. What started with Margo and a long hospital stay was ending with my last chemo and seeing her again. That made us all smile as we stopped and chatted with her for a bit. I had become friends with so many of the nurses there. Bubbly Carri-Ann, the movie star nurse who was filmed during one of my visits. Sarah, the former Navy submarine nurse who first loved Greg's chair that he brought to every chemo. Haley, who always took my vitals and took us to the infusion station. Sue and Kim, the two ladies who volunteer, always making sure every patient had food and drinks. Fred, the pharmacy tech who always delivered the medicines to the nurses--I always requested he make mine strawberry flavored and always got a smile from him. There were just so many wonderful, caring, smiling people who work in infusion and make something that can be very intimidating, depressing, and scary seem so much easier. I can't tell you how much I appreciate every single person up there.
I settled in to Traci's station and once we got started, everything ran like clockwork. As I sat there and watch each of the medications run drop by drop down from the IV bag into the tube and slowly make it's way into my body, I thought about the long, treacherous journey chemotherapy had been. I dreaded the week to come, knowing what these drugs were about to do to my body. I knew what was coming--the red flashes, the nausea, the fatigue. Three more weeks and I was done. Wow, that sounded amazing.
My dad joined us just as we started infusion. I was so glad he was able to be there. Besides Greg, my dad has been my biggest supporter. He has held my hand, stayed by my side, read every post, and heard my cries, my fears and my joys. I wanted him to be with us to celebrate this ending.
Just as the last bit of the last medicine was finishing, the great anticipated celebration started to form. Heather came up from the lab and 15 other smiling nurses formed a loving circle around us. To the tune of the Oscar Mayer wiener song, they sang, "Our patients have the cutest S M I L E's, Our patients have the sweetest H E A R T's. We love to see you every day, but if you ask us then we'll say.....Ring your bell go out the door, cuz no more chemo anymore!" What a perfect send off. What a perfect way to feel loved and celebrated. What a perfect ending to five months--22 weeks--153 days of chemo. It was just perfect.
After tearful hugs and many thank you's, we left the infusion floor, for what I hope is the very last time in my life, other than to visit the wonderful people up there. We exchanged e-mails with Heather with promises to keep in touch and headed to Texas Roadhouse with Greg and I, my dad, Mike and Suzie, and Preston, who had made it up to chemo to join the celebration.
After a celebration dinner, we spent the night in Mesa and a relaxing morning July 4th sleeping in and being lazy. My dad, Greg, Preston, Yuri and I attended my cousin, Sean, and his beautiful bride, Cedar's wedding that evening. It was a good place to be. We celebrated my chemo ending, and a new couple's blissful beginnings. And while the day also marked one year from when we lost my mother, being together as a family in celebration helped us focus on moving forward from all the tragedies this last year has brought.
We traveled home after the wedding, and though it was late, it was really nice to sleep in our own bed and wake up to a relaxing weekend. I knew the steroids would help me through Thursday, Friday and Saturday and this time Sunday would be the "come down" day. What I didn't expect was for the next eight days, all of the bad reactions I've described before coming on so much stronger than before. My red flashes lasted the first six days instead of three and happened so much more often. The diarrhea was constant and exhausting. I had more nausea than ever, but the pills helped each time. What was incredibly stronger than ever was the amount of severe fatigue and overall feeling of yuckiness. I just felt awful. Many days that first week I cried, which I really haven't done much of through this whole thing. Greg was so patient, as always. Each morning I struggled to get ready, and then Greg drove me to work. At lunch he would come to pick me up, and with my feet dragging, he would bring me home where I would sleep in the recliner trying to gather enough strength to go back for the afternoon. I can proudly say, as crappy as I was feeling, I didn't miss a day of work. I definitely could have stayed home that first week, as bad as I was feeling, but I knew that would not do anyone any good. It was better to trudge on and keep my mind busy and I had so many important projects at work. Each evening Greg would come pick me up and tears would fill my eyes on the way home. He would help me inside to the recliner where I would cry until I fell asleep for the first two or three hours of the evening. But then I would wake feeling better emotionally and somewhat physically. All I could think of was how I couldn't wait to be normal again. Day after day I saw no improvement and I just wanted to feel better, feel normal, and be done with all of this.
As Wednesday came and the first week ended, I felt slightly better, but not as good as I had felt in the past. I went to bed frustrated and wondering if I was ever going to feel better again. For several week we had planned a lake trip for the upcoming weekend--the end of week two--because it was the only plausible weekend left when we could go to the lake. While I knew I would be most fatigued and most susceptible to infection that week, we also knew it was the only other overnight lake trip we could see fitting in this season. We have only been to the lake once for a day trip, and once for a one night trip this whole season. I so wanted to go, but I knew if I didn't feel better Thursday, the trip would have to be canceled. We planned to go up Friday morning with Mike and Suzie, and Preston was going to meet us there. Suzie was covering most of the food and I knew everyone would pitch in and help, so if my energy level wasn't up, I would just relax and recover. Apache Lake is my absolute favorite place in the world to be. It is so inspiring, so rejuvenating, and so relaxing and as anxious, uptight, frustrated, and sick as I had been, I just really wanted to be there.
I was so thankful when I woke up Thursday morning feeling better. I actually drove to work myself, which was encouraging. At lunch, I came home, but after putting a few things together for the lake trip and then eating, severe fatigue struck again. I rested in the recliner, and canceled my afternoon meeting. I was frustrated once again. Why was this so hard? I slept for about 45 minutes before returning to work. I worked the afternoon, but by the time I got home, I had no energy to pack. Mike and Suzie had something come up and cancelled on us, so if we were going to keep our lake plan, it would just be Greg, Preston and me. As I sat in the recliner, something just told me to plan to go and that everything would work out. Sure enough, Friday morning I felt human again for the first time in nine days. I was so happy and so ready to just escape. We invited friends from Phoenix, Paul and Diane, to join us at the lake and they were super excited and agreed to come up Saturday. I took the morning slow making a new food plan but we were still on the road before noon. As we pulled in to Apache Lake, we enjoyed a drenching rain shower and light show and then set up camp. Greg and I had the evening alone as Preston wouldn't be coming until Saturday as well. All of the pressure, stress, anxiety, and frustration escaped as we sat on shore and took in the majesty of the surroundings of Upper Burnt Corral. We were completely alone on the beach. It was amazing that no other person was there. It was just like it was supposed to be. Saturday morning, I finally felt human again. I had strength, energy, and encouragement. My spirits were up and we had an amazing day with Preston and Paul and Diane. Late that evening after dinner, I had a small wave of diarrea and fatigue set in, but I just laid down and enjoyed the rest of the evening from the bed. Sunday we spend another great day on the lake, despite my first toenail actually falling off. Electrical tape kept the second one on while I actually had enough strength to wake surf for the first time in a year. We packed up and left around two, came home and unpacked, and after a short rest in the recliner, I feel better physically and emotionally than I have in weeks. It's over. And while it was a really rough ride, it was a great way to end it at the lake.
So chemo four, the final chemo, definitely was the most challenging of them all. I was physically exhausted and sick, mentally broken down, and very discouraged as the effects were more severe and more long-lasting than any of the previous chemos. And that makes sense. My body is done. It has been beaten up with these poisons and had its fill. I couldn't be happier that this part of the journey is over. So next weekend brings our trip to California to celebrate Preston's 21st birthday. And a sudden surprise, Brooklyn, who was flying in to California to meet us, is actually going to drive back home with us after the trip and spend another four weeks home. She'll use her return flight to fly back in mid August just before we head there to move her into the dorms. I'm a little worried about the California trip--the heat, the humidity, the sun, the lines and the people. I am going to call guest services at the parks and see if there is a pass I might be able to get to help with the lines as I don't think I'll have the energy to stand in hour plus long lines. If not, I'll find a nice air conditioned place to hang out while the others enjoy the rides. Last year when we were in Orlando and I had just had my foot surgery, the parks were very accommodating for us so I am hoping they will be in California as well. Some have been concerned about me making the trip, but like everything else, cancer has taken enough from me. I'm not going to give up anything to it that I don't have to. Besides, how many sons want to spend their 21st birthday celebrating with family? I'm not missing this, that's for sure.
So I have around a 20 day break from this crazy race before we start the final leg of radiation. And while phase two of chemo brought a huge, dark, scary storm, it appears the sun had finally come out again.
I want to start this evening by paying tribute to you, the 150-190 loyal readers of this blog, who have supported me by reading my posts and sharing my story. Thank you for following my story through this blog as well as sharing it with others. It is so comforting to know that blogging about my experiences and feelings in dealing with breast cancer has truly helped people understand what I have gone through, and even more importantly, it has truly helped others who are going through it as well. That is so encouraging because I know I'm making something good out of this bad thing that has happend to me. That helps me so much and I believe I am a stronger person because of this blog and your support through reading it so thank you!
I'm sorry I didn't post about my last chemo until now. Honestly, it was a really rough journey and until it passed, I just didn't want to complain about it. Greg kept encouraging me to blog, but I just felt so horrible, and I didn't want to talk about it at all. Interestingly, I was really dreading this last treatment. Everyone kept saying, "Piece of cake. It's your last one. You can do this," but that's really like saying, "No problem. You only have to run through the fire one more time. You got this." I think the more people said it, the more frustrated I became. Treatment three was so hard. I just didn't want to do it again, final time or not. And sure enough, treatment three paled in comparison to treatment four. In fact, today marks day four of week two in the last chemo cycle and yesterday was finally the first day where I actually felt human again. Treatment four, my final round of of Cytoxan, Adriamycin, and 5-FU, took me down hard and made for a very long and challenging first week of final chemo.
It all started with my final chemo being scheduled for Wednesday, July 3rd since the cancer center would be closed for July 4th on Thursday. We drove over that morning to find the lab absolutely packed. Like me, I'm sure many of their Thursday patients were trying to squeeze into Wednesday because of the holiday. We started in the lab with Heather accessing my port. Unfortunately, that meant that not only was Cheryl going to be gone for my final treatment, but Heather was working lab that day so wouldn't be doing my infusion either. I was disappointed, but Heather was super nice and set me up with Traci for infusion. My port was cranky, as always, but this time it was clogged. Heather had to do the Rotor Rutor thing again, which meant putting a special solution in my port to eat away the gunky stuff so it would flow. That would throw us behind on getting lab results before we met with Dr. C., so we decided to have someone draw my labs from my arm while my port was "cooking". I guess that was good since that will be the way they draw my labs shortly anyways. Once chemo is over, there is no real reason to leave my port in, so soon my port will be removed and I'll go back to having labs drawn from my arm during my doctors visits.
It all worked out and before I knew it, we were up on the second floor meeting with Dr. C. Big questions for this visit included, "Why the heck was my hair suddenly growing?" Now I know when people think about cancer patients losing their hair, they think only of head hair, eye lashes, and eye brows. Keep in mind I lost absolutely all hair anywhere on my body. I lost all my arm and leg hair, all facial hair, I even lost all my nose hair. Now that was a funny one. I kept showing people my new bar trick--when I would pinch my nostrils together, they would stick until I pulled them apart. It was funny because you never really know the important role something as insignificant as nose hair plays until you lose it. But suddenly, during week three following treatment three, all my hair started growing. My head started feeling like a soft Q-Tip, I had fuzz all over my face, and I actually picked up a razor for the first time in months and shaved the little stubbles that showed on my legs. I was elated with what looked like hundreds of lower eyelashes that had started popping out, and encouraged as the inside thicker areas of my eyebrows started emerging as well. But if hair wasn't supposed to grow until chemo was over, how the heck was it growing so much now? And, the more important question, was it going to all fall out again after my final chemo four and have to start all over again? The answer--Dr. C. said hair is just so unpredictable and there really wasn't an explanation or prediction. So, the hair mystery began.
While the new hair growth was great news, chemo had to get one last punch in for my final treatment. I showed Dr. C. one of my toenails that the previous day had just started squirting out puss. Keep in mind, my feet are still mostly numb so I never felt pain or irritation. I just suddenly felt wetness between my big toe and the next one and looked down to find puss. After examining it, she put me on an antibiotic and told me there was a good chance I would lose that toenail and maybe others. Then she reassured me that toenail loss is not unusual with chemo. Really? In the last chemo treatment and just as everything is starting to rejuvenate, to regrow, and I'm going to lose toenails? I actually had to laugh. While it really wasn't funny, but more irritating and infuriating, I really did just have to laugh. It was just so ironic, so anticlimactic, so minuscule that it was actually funny. Whatever. At this point, really? What did it matter? I've lost just about everything other "pretty part" on my body. Of course I needed to lose toenails too. I was also frustrated with myself though. I had stopped doing artificial nails when I first started chemo after being advised by the doctor that they really do put you at risk for infection. I had never had pedicures or had my toenails done so I figured I would substitute getting pedicures to help me have a least one part on my body still represent some form of feminine. I had started having my toenails done (Greg too to show is support for me--but that's another story, lol) just before my surgery in January. Cheyanne, a friend who grew up with Preston, has been coming to our house to do our toenails throughout this whole ordeal. I knew everything was more clean and sterile since I wasn't going to a place where hundreds of people get their feet done. Cheyanne had been doing gel nails in different styles to represent breast cancer. I had had mine done only three times since January. It seems like this last time may have caused the problem, or maybe it didn't and it would have happened anyways, who know. All I know is now toenail loss was pretty imminent. Oh well, another story to tell.
Other answers Dr. C. was able to provide included Dr. Byrum, my breast surgeon, would be in charge of taking my port out. We will see her at the end of July and learn more about when that will be scheduled. Also, Dr. C. won't see me again until radiation is over so sometime the week of September 18th. Instead, I will see Dr. Grade every week through radiation. Finally, I asked if we were doing tumor markers for ovarian cancer, why had we not already started tumor markers for breast cancer? Dr. C. said there are no tumor markers for breast cancer. I was surprised. I guess mammograms and scans are the only way to really watch for breast tumors and I would be getting those about every six months. So that was it. With that we were headed upstairs for the final infusion.
Before heading up to the third floor, I went in to the Boutique of Hope to see my friend Rita. She had been so wonderful helping with hats and scarfs and I had grown to just adore her. I was disappointed to find her not there--she only works Thursdays--so I'll have to see her on my next doctors visit. So my Thursday friends all seemed to be gone for the day. Cheryl was on vacation, my friend Heather who was the doctors receptionist, was on vacation, Rita from the gift shop didn't work Wednesdays, and I would soon find out my two favorite volunteers, Sue and Kim, also didn't work Wednesdays.....hmmm I was missing celebrating with some of my favorite people who made me smile.
Up on the infusion floor, everyone was super busy as well. While we waited to be called back, Margo, one of our favorite nurses from my hospital stay, was working calling patients back. We hadn't seen Margo since my surgery. Our friends, Mike and Suzie, who had stayed at the hospital so much with us, had come for my last chemo. Margo instantly recognized the four of us sitting there and we were delighted to see her. It was like everything was full-circle. What started with Margo and a long hospital stay was ending with my last chemo and seeing her again. That made us all smile as we stopped and chatted with her for a bit. I had become friends with so many of the nurses there. Bubbly Carri-Ann, the movie star nurse who was filmed during one of my visits. Sarah, the former Navy submarine nurse who first loved Greg's chair that he brought to every chemo. Haley, who always took my vitals and took us to the infusion station. Sue and Kim, the two ladies who volunteer, always making sure every patient had food and drinks. Fred, the pharmacy tech who always delivered the medicines to the nurses--I always requested he make mine strawberry flavored and always got a smile from him. There were just so many wonderful, caring, smiling people who work in infusion and make something that can be very intimidating, depressing, and scary seem so much easier. I can't tell you how much I appreciate every single person up there.
I settled in to Traci's station and once we got started, everything ran like clockwork. As I sat there and watch each of the medications run drop by drop down from the IV bag into the tube and slowly make it's way into my body, I thought about the long, treacherous journey chemotherapy had been. I dreaded the week to come, knowing what these drugs were about to do to my body. I knew what was coming--the red flashes, the nausea, the fatigue. Three more weeks and I was done. Wow, that sounded amazing.
My dad joined us just as we started infusion. I was so glad he was able to be there. Besides Greg, my dad has been my biggest supporter. He has held my hand, stayed by my side, read every post, and heard my cries, my fears and my joys. I wanted him to be with us to celebrate this ending.
Just as the last bit of the last medicine was finishing, the great anticipated celebration started to form. Heather came up from the lab and 15 other smiling nurses formed a loving circle around us. To the tune of the Oscar Mayer wiener song, they sang, "Our patients have the cutest S M I L E's, Our patients have the sweetest H E A R T's. We love to see you every day, but if you ask us then we'll say.....Ring your bell go out the door, cuz no more chemo anymore!" What a perfect send off. What a perfect way to feel loved and celebrated. What a perfect ending to five months--22 weeks--153 days of chemo. It was just perfect.
After tearful hugs and many thank you's, we left the infusion floor, for what I hope is the very last time in my life, other than to visit the wonderful people up there. We exchanged e-mails with Heather with promises to keep in touch and headed to Texas Roadhouse with Greg and I, my dad, Mike and Suzie, and Preston, who had made it up to chemo to join the celebration.
After a celebration dinner, we spent the night in Mesa and a relaxing morning July 4th sleeping in and being lazy. My dad, Greg, Preston, Yuri and I attended my cousin, Sean, and his beautiful bride, Cedar's wedding that evening. It was a good place to be. We celebrated my chemo ending, and a new couple's blissful beginnings. And while the day also marked one year from when we lost my mother, being together as a family in celebration helped us focus on moving forward from all the tragedies this last year has brought.
We traveled home after the wedding, and though it was late, it was really nice to sleep in our own bed and wake up to a relaxing weekend. I knew the steroids would help me through Thursday, Friday and Saturday and this time Sunday would be the "come down" day. What I didn't expect was for the next eight days, all of the bad reactions I've described before coming on so much stronger than before. My red flashes lasted the first six days instead of three and happened so much more often. The diarrhea was constant and exhausting. I had more nausea than ever, but the pills helped each time. What was incredibly stronger than ever was the amount of severe fatigue and overall feeling of yuckiness. I just felt awful. Many days that first week I cried, which I really haven't done much of through this whole thing. Greg was so patient, as always. Each morning I struggled to get ready, and then Greg drove me to work. At lunch he would come to pick me up, and with my feet dragging, he would bring me home where I would sleep in the recliner trying to gather enough strength to go back for the afternoon. I can proudly say, as crappy as I was feeling, I didn't miss a day of work. I definitely could have stayed home that first week, as bad as I was feeling, but I knew that would not do anyone any good. It was better to trudge on and keep my mind busy and I had so many important projects at work. Each evening Greg would come pick me up and tears would fill my eyes on the way home. He would help me inside to the recliner where I would cry until I fell asleep for the first two or three hours of the evening. But then I would wake feeling better emotionally and somewhat physically. All I could think of was how I couldn't wait to be normal again. Day after day I saw no improvement and I just wanted to feel better, feel normal, and be done with all of this.
As Wednesday came and the first week ended, I felt slightly better, but not as good as I had felt in the past. I went to bed frustrated and wondering if I was ever going to feel better again. For several week we had planned a lake trip for the upcoming weekend--the end of week two--because it was the only plausible weekend left when we could go to the lake. While I knew I would be most fatigued and most susceptible to infection that week, we also knew it was the only other overnight lake trip we could see fitting in this season. We have only been to the lake once for a day trip, and once for a one night trip this whole season. I so wanted to go, but I knew if I didn't feel better Thursday, the trip would have to be canceled. We planned to go up Friday morning with Mike and Suzie, and Preston was going to meet us there. Suzie was covering most of the food and I knew everyone would pitch in and help, so if my energy level wasn't up, I would just relax and recover. Apache Lake is my absolute favorite place in the world to be. It is so inspiring, so rejuvenating, and so relaxing and as anxious, uptight, frustrated, and sick as I had been, I just really wanted to be there.
I was so thankful when I woke up Thursday morning feeling better. I actually drove to work myself, which was encouraging. At lunch, I came home, but after putting a few things together for the lake trip and then eating, severe fatigue struck again. I rested in the recliner, and canceled my afternoon meeting. I was frustrated once again. Why was this so hard? I slept for about 45 minutes before returning to work. I worked the afternoon, but by the time I got home, I had no energy to pack. Mike and Suzie had something come up and cancelled on us, so if we were going to keep our lake plan, it would just be Greg, Preston and me. As I sat in the recliner, something just told me to plan to go and that everything would work out. Sure enough, Friday morning I felt human again for the first time in nine days. I was so happy and so ready to just escape. We invited friends from Phoenix, Paul and Diane, to join us at the lake and they were super excited and agreed to come up Saturday. I took the morning slow making a new food plan but we were still on the road before noon. As we pulled in to Apache Lake, we enjoyed a drenching rain shower and light show and then set up camp. Greg and I had the evening alone as Preston wouldn't be coming until Saturday as well. All of the pressure, stress, anxiety, and frustration escaped as we sat on shore and took in the majesty of the surroundings of Upper Burnt Corral. We were completely alone on the beach. It was amazing that no other person was there. It was just like it was supposed to be. Saturday morning, I finally felt human again. I had strength, energy, and encouragement. My spirits were up and we had an amazing day with Preston and Paul and Diane. Late that evening after dinner, I had a small wave of diarrea and fatigue set in, but I just laid down and enjoyed the rest of the evening from the bed. Sunday we spend another great day on the lake, despite my first toenail actually falling off. Electrical tape kept the second one on while I actually had enough strength to wake surf for the first time in a year. We packed up and left around two, came home and unpacked, and after a short rest in the recliner, I feel better physically and emotionally than I have in weeks. It's over. And while it was a really rough ride, it was a great way to end it at the lake.
So chemo four, the final chemo, definitely was the most challenging of them all. I was physically exhausted and sick, mentally broken down, and very discouraged as the effects were more severe and more long-lasting than any of the previous chemos. And that makes sense. My body is done. It has been beaten up with these poisons and had its fill. I couldn't be happier that this part of the journey is over. So next weekend brings our trip to California to celebrate Preston's 21st birthday. And a sudden surprise, Brooklyn, who was flying in to California to meet us, is actually going to drive back home with us after the trip and spend another four weeks home. She'll use her return flight to fly back in mid August just before we head there to move her into the dorms. I'm a little worried about the California trip--the heat, the humidity, the sun, the lines and the people. I am going to call guest services at the parks and see if there is a pass I might be able to get to help with the lines as I don't think I'll have the energy to stand in hour plus long lines. If not, I'll find a nice air conditioned place to hang out while the others enjoy the rides. Last year when we were in Orlando and I had just had my foot surgery, the parks were very accommodating for us so I am hoping they will be in California as well. Some have been concerned about me making the trip, but like everything else, cancer has taken enough from me. I'm not going to give up anything to it that I don't have to. Besides, how many sons want to spend their 21st birthday celebrating with family? I'm not missing this, that's for sure.
So I have around a 20 day break from this crazy race before we start the final leg of radiation. And while phase two of chemo brought a huge, dark, scary storm, it appears the sun had finally come out again.
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