In case you have not realized, I like to write detailed posts. If you are looking for bullet points or Coles Notes, you will not find them here. Sit back, grab a coffee and enjoy. Also, feel free to reply with any comments or encouragements. I am always looking to hear from you as it motivates me to continue with the writing and the fight.
I am still learning that I need to slow down when going through chemo and have little energy. I have yet to realize this and put it into action. I want to do everything and not miss out, especially when it comes to seeing people I have not seen in a very long time. I will push myself beyond tired to do the things I want to do even though I will pay for it in the end. That pretty much sums up the week. Here are the details.
We had a bit of a scare last Friday, April 26. It all started when I was getting a bit of a sore throat in the afternoon. Mary Ann was busy around dinner as she was helping a friend whose mother is not doing well and is in palliative care. She made dinner for her friend’s family to help relieve the stress that they were going through. As she arrived to what she thought was where they were, she discovered that it was their home and not the palliative care unit. The home was in Orleans, near where we live, however they were downtown Ottawa. With the hot food, she rushed to bring it to them before it was cold. During this time, my throat was not getting any better but I was at home so that I could rest. The rest of the family decided to not wait for MA to return to have dinner. After dinner, I got a “hot flash” where I had a full body sweat. Combined with the sore throat, this scared me as I was worried that I had an infection and would need to go to the hospital. The key thing they tell you is that you should watch your temperature and should it ever go above 38°C I would need to go to Emergency to monitor and get some IV antibiotics. Of course, this would be the time that the batteries in our thermometer would be dead. I called the afterhours number for the hematology department to see what to do while I waited for batteries. At this time, I had spoken with MA to let her know to get back soon in case I needed to head to the hospital and get batteries on the way. After talking with the doctor, she stated that I should wait until my fever was high enough to justify going in. I called MA to see where she was and while she was on the phone, she decided to pass some cars and one of them just happened to be a cop. This cop was not in a caring mood and did not understand the stress of the situation and stated that if it was an emergency that we should use EMS to get me to the hospital and not speed. He handed her a ticket which made the day even worse. I decided to get the batteries myself so that I could get them sooner instead of waiting for MA. The good news is that I did not have a fever but have been battling a cough all week that has yet to go away.
I did not do much for the rest of the weekend knowing that I would be having a busy week. On Monday, April 29, I had another appointment with my hematologist, Dr. B-B, where we discussed what the plan would be for the coming weeks and how I will be transitioning from her to the BMT (Bone Marrow Transplant) team. After the appointment, it was a quick stop at Princess Auto and the long drive to North Bay for my uncle’s funeral. We got to Mom’s place in the early afternoon and I rested on the couch until it was time to head to the wake. We arrived around 5:30 and met up with the family. I was surprised by the number of people already there and proceeded to catch up with many of them. Unfortunately, each time we were about to leave, someone new would arrive that I had not seen in a while and wanted to catch up with. We did not leave until 7:00 which was much longer than I had hoped and took a lot more energy than what I had. We got home and had dinner and I rested the best I could for the rest of the night. The next day my brother and his wife arrived around lunch. The funeral was at 2:00 and we arrived around 1:30. I was still tired from the activities from the day before and I think it got to me as my anxiety steadily increased while I waited for the funeral to start. Shortly into the funeral, I was not sure I would make it to the end as I was feeling extremely drained, not realizing it was the anxiety kicking in. Lucky for me, my cousins Karen, Peter and Marianne were giving an amazing and funny eulogy for their father that helped calm me down and I was able to relax and stay for the entire funeral. After the funeral, we socialized with the attendees and then headed to my aunt Rita’s place for gathering of the families. It was a good time and I enjoyed chatting with everyone though I was really starting to feel the fatigue setting in. We finally left there around 5:30, headed to Mom’s for a quick change and then MA and I started our drive home. I tried to rest while she drove us home. After all the activities of the past two days, Wednesday was a write off as I was still very tired and spent most of the day on the couch, not able to do much.
Thursday, May 2, was the twins’ birthday. We did not celebrate much that day as everyone was busy. MA and I did go to Isabelle’s touch football game where they won 15-0 and MA took Cassy to her soccer practice in the evening. In both cases, cupcakes were available for the teams to enjoy while they sang Happy Birthday to each of them. I went to hockey and had a good game. It was one where I did not suck too much wind so it made it much more enjoyable. I also made a cake for a dinner party we would be attending the following day. On Friday, I finished decorating the cake and headed to our friends’ place, Cathie and Larry, for a wonderful dinner. I had not seen them in over 6 months so it was great to catch up and spend some time with them. I was still tired on Saturday so I kept it low key. I had planned on going to a friend’s 50th birthday party but I feared I would not have the strength to be with so many people, especially with ones that might not know my situation and could ask a lot of questions. I felt bad for missing it as I pride myself on ensuring I make it to these events but it was a long busy week and I needed time to decompress and rest. Instead, I went to a friend’s place for dinner where I knew all I would need to do is sit and eat. Even this was a lot for me as I felt very tired and would have to leave early. Come Sunday, I was exhausted. Having done so much this week really had taken a toll on me and I really felt it on this day. Once again, I spent the day resting in front of the TV to try to rebuild my reserves.
The coming week will be a busy one. On Monday, May 6, I had a CT scan to see how much the tumor has shrunk. I don’t think it has reduced as much as I had thought originally though it has gone down quite a bit. This is an important scan as I need to have minimized the tumor in order to start the next phase of my treatments, a stem cell transplant. I also had an unexpected blood test because of the cough I was battling. They needed to ensure that my counts were good so that I could do chemo the next day. Tuesday, I started my last round (hopefully) of chemo. It went well and we were able to bring our therapy dog with us without any issues. It was great to have her there and she did a wonderful job and even helped a few others also getting treatment. While I was doing the chemo, I got a surprise call from the BMT (Bone Marrow Transplant) department stating they cancelled my planning meeting that was scheduled for Wednesday. The person on the line seemed to think that I should already know why and she did not/would not provide any details as to why. This caused us much stress as we did not know why it was cancelled. Some of the options were that the tumor was still too big and would need more chemo treatments, or it could have been something more major, like they would be cancelling it outright. We tried to reach out to the BMT team and our hematologist for answers but none were responding. Late Tuesday, after several VMs, we finally found out that they did not have CT results so they could not decide what the plan will be so no need for the planning meeting. I wish they could have started with that as it would have relieved a bunch of stress that we did not need. This planning meeting is for my stem cell transplant that is planned for later in the summer. Currently, I am scheduled for an autologous stem cell transplant where they will harvest my stem cells, give me chemo for 5 days to kill off everything and then replant my stem cells after a few days. This will kill off my immune system so I will be highly susceptible to infections for the next month while my immune system is restored. I will need to stay home and have constant care during that time, have daily visits to the hospital for checkups and treatment and have no outside contact. I will be very weak and unable to drive. It will not be a great time but I am ready for it and know it will help me in the future so that I never get this again. Something else that is probably also adding to my stress is the lack of coffee the last two days. I am really feeling/missing it. Can’t wait until Saturday to have it again. The good news though is no hiccups so far, knock on wood.
That is all for now. One thing to keep in mind, I have no use for your pity but will take all the support you can give. Talk to you soon.