I have been struggling to write this week because of all the challenges that came up. I am hoping that this is the low point in my fight and that I can start to look for brighter things to come. Here are the details.
Last weekend, I spend Saturday, May 11, at Richard’s (my close friend’s) cottage. He was there to open it for the season and I was there so that he did not do it alone. As much as I love this cottage and want to help in any way I can, this was not my role for the day. Coming off the start of round 3 of chemo, my energy levels were not there so I agreed to keep my activities to a minimum. We got there late in the morning and proceeded to get the summer furniture out so that we could start the cleanup inside. Shortly after arriving, his fiancé, Liane, showed up to help. She could not stay very long as she had an event in the evening that she could not miss. Once the inside was mostly cleaned, I proceeded to do the only thing I could and make lunch for the busy workers. Afterwards, Li left, I took a nap and Richard continued with his chores. Richard and I had evening plans which included tickets for a comedy show at the local bar at Brennen’s Hill, near his cottage. Around 6:00 PM, we proceeded to the bar to have a roast beef buffet dinner and then listen to the comics. There were about 6 different comics during the evening, some good, some… not so good, but we had fun none the less. We got home before 11:00 and had a quick drink and chat before bed. This is the point at which my bad week started. If you remember from my last post, I had battled a chest infection going into Round 3 chemo cycle and needed antibiotics. This infection had also caused my ears to block causing them to feel like I was underwater (I am still battling this as I write). That night at around 3:00 AM I woke with a major pain in my right ear. This has been the ear that I have issues with blocking, especially when I fly. I had been playing with my ears the night before to try to help unclog them so, by now, I have aggravated them to the point that they are now in pain. I feared it was an infection and, given my weakened immune system, I proceeded to monitor my temperature to ensure I did not start a fever. I could no longer sleep for the rest of the night and tried to occupy my time until Richard got up. Lucky for me, he was up very early, around 5:30 AM, so we decided to pack up and head back to town where I could get the number for the after-hours doctor and see what I should do. I got home around 7:30 and proceeded to call the hospital and make breakfast while I waited. I spoke with the doctor and he confirmed that I should continue to monitor my temperature and not take anything for the pain as it could affect any signs that I might get a fever. Though I was still very tired, the pain kept me up for the rest of the morning but was able to get a nap in the afternoon once the pain had subsided.
Monday proved to not be much better. I had an appointment with my hematologist early afternoon where she was finally able to provide the results of my CT scan from the week prior and explain why my BMT planning meeting was cancelled. The news she shared was not great. The chemo that I had taken had little effect on my tumor and, as a result, the stem cell transplant would no longer be an option. This was very much a surprise given how much better I was feeling and the visible changes I experienced while doing the treatments. The theory as to why it seems the tumor was smaller are twofold: the first, is the possibility that the cancer was very active between my first CT scan and the start of the chemo treatments so it had increased in size even more, and the second, that there was a lot of inflammation from the cancer that was reduced in the first round by the steroids I was taking. As a result of this, the treatment plans have changed. I will begin a new type of chemo starting next week called ICE but will also look into seeing if I can be part of a trial happening in Toronto called CAR-T Cell immunotherapy. More on that later. This put a real damper on the rest of the day as I processed this new information and the impacts it would have moving forward. Also, my beloved Ottawa 67’s were eliminated from the playoffs after winning 14 games in a row and then losing 4 in a row in the championship finals.
Tuesday, May 14, was chemo day. Even though this chemo had proven to not be as effective, it was still recommended to complete the treatment schedule. I had an appointment later in the day which proved to be beneficial as my morning was very busy with phone calls. By 8:30, the Princess Margaret hospital called to schedule me in for my consult for the CAR-T cell treatment to happen on Friday. Ironically, my hospital also called to schedule my stem cell planning meetings and collections. As much as I wanted to get this going, I had to politely tell them to speak with my hematologist about the change in plans. I spent the rest of the morning trying to figure out how to get to Toronto: mapping out places to stay while there, seeing what financial aids could be leveraged for such trips and cancelling my other plans for those days. I was so wrapped up in all the planning that I almost forgot my chemo appointment so I had to rush to eat and get out of the house. It did not go smoothly at my chemo session either. We were on time and got into our pod relatively quickly to start, however, I suspect that due to the changes in the plans, the hospital pharmacy did not get my chemo drugs ready, meaning we needed to wait at least an additional hour for them to get them done. When they finally came, none of the nurses reacted so MA had to go find them so that we can hang the chemo bags and get this process done. While I was waiting though, I took the time to learn more about the CAR-T Cell treatments. This longer session wore me out and, unfortunately, my day was not done yet. I had booked a “session” with my friend Liane to talk about all the chaos going on this week. She is not only a very close friend but happens to be a social worker at the hospital for cancer patients. I wanted to pick her brain about what she knew about financial programs and such to help with this trip to Toronto, along with some other stuff. I was reluctant to ask her for this help as it is not her responsibility to do this for me, but we were having issues with getting the social workers assigned to hematology patients to return our calls, even after bringing it up with Dr. B-B the day before. In the end, I am glad I did as she was able to move things along quite quickly. At this point, I was both mentally and physically exhausted, so I was glad to hear that baseball was cancelled that night as I was not sure I had any stamina left to play though I wanted to as it would have been our first game of the year. It also gave me a chance to talk with the kids that night about the changes to the treatment plan, our upcoming trip to Toronto and answer any questions they may have had.
The next day was no more relaxing. Through Li’s help, we finally got a call from the social worker assigned to hematology patients. This helped us unlock access to the needed support councilors so that our family can get some therapy to deal with my disease and to assist with seeing what options we have when going to Toronto for appointments and treatment. One of the great things that happened as a result was that our social worker was able to contact the social workers at the Princess Margaret hospital where I would be seeing the cancer doctor running the CAR-T Cell trial to help with getting me into the Princess Margaret Lodge for the night. This lodge is available to patients to stay while they undergo treatments at the hospital. This was a great relief as it is located very close to the hospital with free shuttles, comes at a greatly reduced cost and they offer 3 meals a day, all for $30/person-night. My backup plan was to stay at my brother’s, but the lodge made things so much easier, especially as I did not need to fight the morning traffic to get downtown. All this work meant I was on the phone for several hours that day which drained me of the little energy that I had, given my treatment from the day before. Also, starting this morning and continuing for the next few days, I would get symptoms of vertigo that I suspect were due to my still clogged ears or one of my chemo drugs. Dr. B-B was not able to prescribe anything for my ears and suggested I speak with the pharmacist to recommend a decongestant which, in the end, he could not due to my blood pressure medication. I was able to mention this to Dr. B-B afterwards and she said to check my pressure and if it was low, try to take a decongestant and continue to monitor afterwards however, given the stressful week, I never had it low enough to try.
Again, Thursday, May 16, was no better. Between the vertigo I was experiencing, the fatigue from the chemo and the anxiety of knowing I would need to drive 5h to Toronto, I was having a very rough morning and could not see myself being able to help with the driving. Thank god that MA was able to drive all the way as I am not sure if I could have made it otherwise. We left around 2:00 PM and were delighted to see that the traffic on the 401 was not too bad and did not hit any until we hit the DVP. From there, it was very slow with bumper to bumper traffic stalled by the construction that was also happening as we got on to the freeway. We made it to the Princess Margaret Lodge around 6:30 to check in. The lodge is like a dorm where you can share rooms with other patients. It has a cafeteria that is somewhat stocked with drinks and bread and has toasters and microwaves should you have your own meals to cook, on top of the three hot meals they serve each day. There is also shared TV rooms and other relaxation rooms where you can sit and read along with a small patio outside. The only drawback is that the room doors do not have locks on them, this is so that if there is a medical emergency they can quickly access the patient. This was a bit unnerving, but we got a sense that everyone there is respectful of each other so there would not be any issues. They do, however, highly recommend not leaving valuables in the rooms. We got lucky and we were able to get a room with our own bathroom and shower as many of the rooms require using a shared bathroom and shower room. The room itself had two twin beds, a bar fridge and the floor had a mini closet kitchen that had a microwave, toaster, kettle and was stocked with some food like soups, ramen noodles and Ensure. All the rooms have wifi access so MA and I spent the night watching Netflix.
Another long day was had on Friday as we were scheduled to visit the trial doctor. As always, I was up early around 5:30 so I proceeded to head to the caf for some coffee. Though breakfast was not scheduled until 7:30, I was hopeful that the coffee had started brewing. Much to my dismay, it had not. I changed my plans and took a quick shower and headed to the nearest Timmies. It was a bit of a walk that took about 20min that helped me realize how little exercise I had done in the past week as my legs were burning upon my return. I got back to the room and proceeded to read my paper electronically and catch up on emails before breakfast. By this time, MA had woken up and we headed down to the caf for about 8:00 for breakfast. It was a bit too late as they ran out of hot meals so she settled for oatmeal and I had cereal and toast. After our meal, we went back to the room to get ready to head out and pack our stuff to store in their luggage room. We boarded the shuttle bus to the hospital around 9:30. One thing we did not realize was how MA’s nausea was going to react to the short drive as the bus did not take the bumps in the road gracefully. We got off the bus and headed into the hospital to find the doctor’s clinic. The information I had received was that it was on the second floor of the Princess Margaret hospital and was confirmed by my brother as he too has been going there for some time. When we got to the second floor, we could not find the clinic so we asked for directions but they told us that hematology was on the seventh floor. This was weird as my notes said the second floor but we decided to go there anyway. We found hematology and started to check in. When we said we were here to see Dr. Kuruvilla they said there was no doctor here by that name. As my panic started to set it, quick thinking MA asked a very important question, “Is this the Princess Margaret hospital?” Turns out, we were in the Toronto General and needed to cross the street to reach our destination. Luckily, we were early so we had time to recover. Once in the right hospital, we were able to find our doctor’s clinic and proceeded to wait our turn. Naturally, the doctor was running late but we finally got in and were greeted by his nurse to start. She did a full medical history on me before one of the residents saw me. This resident checked me out and reviewed some of the symptoms I had, making some recommendations on how to address them but never really provided me with any recs to do them so not sure what the outcome of this will be. I am hoping that at my appointment with Dr. B-B on Tuesday that she will help put their plan to action. After this was done, we waited some more in the room for Dr. Kuruvilla. He seemed nice and was very direct, which I appreciated. He was very frank about my options moving forward with my current treatment plans and talked about the benefits I could see if I make it into his study. We talked at length about the treatment, its side effects and the risks associated. It was very sobering and scary but did not change my mind that this will be the best treatment for me. After this visit, we spent a long time with the clinical nurse in charge of managing the patients in the trial. The first step was to convince her that we were ready to sign the consent forms today and not wait for the weekend to review. Both MA and I are convinced that this is the best path forward and wanted to get as much done while in Toronto as we could before we headed back home. We proceeded to review in detail the 23 page consent forms which took about 1h to go through and sign. I felt like I was signing mortgage papers! After getting this signed off, I headed to the blood lab to collect about 9 vials of blood to start the screening process. By this time, it was about 2:00 PM and we had not had lunch yet so MA went and got some food. The vampires were quick, and we headed back to the doctor’s clinic as we had a few more consent forms to fill out before we left for the day. While I was filling out the forms, MA was eating and the smells were wafting in the small meeting room which was really adding to my hunger pains. I hope the clinical nurse was not hungry as we were definitely not making her life any easier. We finally got all this done by 3:00, I had my lunch and then we both walked out of the hospital to catch the shuttle back to the Lodge, which was not coming until 3:45. We got back to the Lodge, checked out and grabbed our gear. We then packed the car, gassed up and headed home. It was a long day and we still had a long drive ahead of us which was not helped by the fact we were leaving during rush hour on a Friday of a long weekend. I got settled in while MA drove home and we made a few calls during the ride to let people know how it went. We were finally home by 9:30 that evening and I was happy to finally be resting in my lazyboy.
Here is a bit more on the CAR-T Cell treatment. The process involves harvesting T cells from my blood which are a part of my immune system. From there, they are shipped to California where they are modified with an additional protein so that once they are back in my body, they can recognize the cancer cells and attack them. This protein acts as a receptor to help it recognize the presence of the cancer cell, similarly to what happens when a vaccine is injected into the body to help the immune system recognize the associated virus it has been targeted to kill. Collection of these cells is similar to what the stem cell collection is in that they will attach me to a device that draws my blood, like what is done with a dialysis machine, which separates the blood into its components and draws out the T cells. The transformation process on these cells takes about 17 days and is then shipped back to the hospital for reintroduction. Once they know when these cells are coming back and have cleared customs, the patient is prepared to receive the cells. The first step is to make room for them by doing 3 days of chemo as either in or out patient. The cells are then injected into the patient and for the next week (or more) while the patient stays in the hospital, the cells will reproduce quickly and can overrun the immune system which can then cause many of the major potential side effects, hence the reason for the hospital stay. Once the patient is past the riskier parts, he is discharged from the hospital but needs to stay within 1h of the hospital should other, more dramatic, side effects occur for the coming month. After this period is done, weekly follow up visits are done and then slowly expand to every 2 weeks, 1 month, 3 months and 6 months, after about 3 years. Semiannual visits will continue to happen for the next 15 years as part of this study. Prior to getting into the study though, a thorough screening process is done whereby blood and biopsies are done along with several different imaging scans, like CTs, PETs and MRIs. Most if not all of this, needs to be done in Toronto at the Princess Margaret but some can be leveraged off of what has already been done here in Ottawa. This is going to mean many trips to Toronto and an extended stay should I make it into the study. Small price to pay for a treatment that will cure my cancer and stay in my system for the rest of my life to continue to fight cancer.
Saturday was a good day for me, especially given the week I had. The original plan at the start of the week was to take the weekend to rest but I found out on Thursday that my manager from Germany was in town so I wanted to see her before she left. We made plans to meet for lunch that morning and I would take her on a personal tour of my favorite Ottawa spots. I met her downtown for 12:30 and we found a restaurant for lunch. We chatted for a long time and I was able to check up on all that was happening at work and with the team. Afterwards, we headed out on our tour visiting Rideau falls, the lookout in front of the US Embassy residence and then worked our way back downtown to follow the canal on our way to the airport. We needed to stop at Pro Hockey Life before the airport though as she needed to get some pucks for her boyfriend who collects NHL logoed pucks. I dropped her off at the airport at 4:00 for her 6:00 flight and headed home for some rest. I was very happy to have spent the time with her and still have enough energy to do it all. The only down side was that I had brought my camera to take pictures but the batteries, that I had charged recently, were all dead and I did not have my backups. The rest of the day was spent resting and spending time with the family, minus Geneviève who was in Quebec City for the national fencing competition but was coming back late Saturday night.
The cherry that topped off my terrible week came late Saturday night, May 18. After MA and I went to bed, we got a call around 11:30 PM. Calls at this time of the night are never good. MA got up to take the call and it was her mother on the line. She had just arrived in Kirkland Lake that day when tragedy struck the McLean family. Carole told us that MA’s father had passed. This was very sad news to get so late at night which made for terrible sleep for both of us. On the bright side though, we found out that he spent a great week up until that point, going fishing with his sons and playing shuffle board then peacefully took his last breath while taking a nap in front of the TV after another one of Jackie’s delicious dinners. This made for a very stressful and busy day Sunday. As MA organized how she was going to get to KL and work out funeral details with the family, I helped by searching for options for her travel and collecting photos of her father. Most of her day was spent on the phone with her brothers planning out the coming days. In the end, it was decided that she would take the midnight bus out of Ottawa for a 9:00 AM arrival in KL so that we would not need to drive two cars home after the funeral. The kids and I will join her later in the week as to minimize missed school. As I write, the plans are that we will head out on Tuesday afternoon, after my appointment with Dr. B-B, stay at my mom’s for the night and get up early on Wednesday to complete the journey to KL. There will be a private showing for the immediate family at 12:30 on Wednesday, followed by public viewings in the afternoon and evening. The funeral will take place at 11:00 on Thursday and we will all head back to Ottawa afterwards. All this is really going to test my energy levels this week but at least I can lean on Geneviève to help with the driving along the way. I am really hoping that this is the lowest part of my journey this time and that I can start to see more positives in the near future. It has been a very trying and rough week that I just want to put behind me and look forward to a brighter future. This new CAR-T cell treatment plan will be the start of this so wish me a lot of luck in the hopes that I can get into the study.