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!
Tuesday, April 30, 2013
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.
Subscribe to:
Posts (Atom)