Hi All,
So for many of you this is probably coming to you as a shock. Yes, after 2.5 years in remission my cancer is back. I have the same form of cancer I had before, Large Diffuse B Cell Lymphoma. It is located in a similar location in my abdomen, on the right side.
I had started feeling symptoms for some time now, since about last summer, but when I had it checked by a family doctor (not my regular doctor but the one that was in the walk in clinic) he stated that there were no signs of lymphoma and my last CT scan was clear. For this reason, I thought it was just some other symptoms and ignored them for too long. By the time winter came, I could feel a mass starting to grow in my abdomen and knew it was not going to be good. It took me too long to get in to see a doctor due to laziness on my part and fear of finding out what I already knew to be true. I booked an appointment with my family doctor in late January and she scheduled an “urgent” CT scan following it.
I need to use quotes when I say urgent because it took over 6 weeks to get it scheduled. I did not get it until early March and, by this time, the tumor had started protruding from my belly and could be seen easily, depending on how I was laying. The night of my CT scan was an interesting one. I needed to go to the Civic Hospital for the scan (most of my cancer treatments have been at the General Hospital, which is closer to us) and, on this night, the CT scanner in the ER was not working so they were doing double duty on the one upstairs. This meant a longer wait for me to get in to get my scan. Also, on top of this, I believe it was also the cause of the delayed results from it.
It took over 1 week to get the results of the scan to my family doctor and, like last time, it just so happened to coincide with her vacation. When I was diagnosed the first time, 3 years ago, she was very sad and upset that she was not around to provide me with these results. Ironically, it happened again. We have since told her that she is no longer allowed to go on holidays. The doctor covering her (the same one I had seen last summer) took a few days to read the results before getting back to us. I tried to call my hematologist as well to see if she had the results and could provide any info but I could not get a hold of her as my Besty (my old hematologist retired last year) and the card she gave me seem to have the wrong number to reach her.
We finally got the results over the phone on Wednesday, Mar 6 and it confirmed that there was a mass in my abdomen. The family doctor I spoke with needed to do more consulting to see what should be the next course of action so we waited some more. He did tell me that the mass was big, being about 14 x 12 x 7 cm. By Friday, Mary Ann decided to call my new hematologist, Dr, Bence-Bruckler, to see if she had reviewed the CT scan and had any advice. She did not get a chance to speak with her but spoke to a secretary/nurse who quickly wrote her off saying that “they will get to the results and will get back to you.” Blah, blah, blah! This was not the answer we wanted but I think the call sparked something because within a few hours, they had a “holy shit” moment and had called MA back stating that they would be in touch by Monday morning with a list of appointments for follow-uo on tests and discussions.
This was leading into the kids’ March Break. We had been planning to do a family trip together that week as we suspected that it may be the last one for a little while knowing that I could be facing a battle up ahead. Unfortunately/fortunately, this did not happen. Due to MA’s concussion symptoms that she has been fighting for a year, we felt it would be best if we did not go anywhere and did more of a staycation. The family and I planned activities throughout the week while still allowing time for the twins to do their in class driving course during the week and letting Genevieve go ref at a fencing tournament on her birthday while MA and the twins went to Montreal for Isabelle’s volleyball tournament. As I was going to be home alone that same weekend, I spent some quality time at my buddy Rick’s place all weekend where we had great food and I was able to chat with him about what is coming up and how to deal with this tremendous news.
During the week though, we were busy with appointments and tests which worked out well as I was off from work already. Tuesday was our first visit with Dr. B-B and she was very frank. Though all we had was the CT results, she flat out said that we are probably dealing with Lymphoma again and laid out the protocol of what is going to happen. This was tough news to swallow but she did say we are fighting for a cure not for better quality of life. This gave me hope that I can beat this again, so the fight is on. That night, I was scheduled to do training for the LLSC’s (Leukemia and Lymphoma Society of Canada) First Connections course. This is a program that matches past cancer patients with newly diagnosed ones to help them through all the information received and help navigate and provide support. I was really hoping I could help others through this program but this will need to be put on hold as I focus on my fight first.
Wednesday, Mar 13, was biopsy day. It was a morning appointment. They got me prepped and into the OR and froze a path to my tumor through my abdomen to insert the needle that would collect a sample of my tumor. The final appointment for the week was a PET scan on Friday to see how active the tumor was and get a better sense of where it is located. The results of this showed that the tumor grew more to 17 x 14 x 12 cm (though they say that the measurements are not as accurate with this test). Either way, I could feel the cancer growing rapidly and my energy levels dwindling rapidly as the week went on. It was like once I knew that this was real, I got really tired quickly and had no motivation to do anything.
After this long week, now I needed to get my life in order. During the appointment with Dr B-B on Tuesday, it was decided that chemo would start in two weeks so this meant that I had about 1 week to let my work know what was going on and start planning for my time off and setup sick leave benefits. This made for a stressful weekend and start to a stressful week. Monday was a big day. First off, I needed to talk with my manager, who is in Germany, to let her know what was going on and then let HR, who is in Ottawa, to get started with the transition. This all went well and they were very supportive. This was still very challenging to schedule in as typically my Mondays are my busiest days as I have many meetings. I somehow survived the day but it was a very long one and I was exhausted by the end of it. Both HR and my manager were very understanding and suggested that I work at my own pace and work from home as needed. This was a great relief as I was getting tired and lethargic more quickly than ever before.
I had another appointment with a different hematologist on Tuesday, Mar 19 to start planning the the chemo treatments and answer any new questions we had. The protocol is going to be 3 rounds of GDP chemo (last time I did 6 rounds of R-CHOP) which would then be followed by either a stem cell transplant, or T Cell therapy. Chemo was starting the next week so we did not have much time to plan and get prepared for it. On Wednesday, I decided to go into work so that I could tell my colleagues the news in person. I started with a conference call with my German team which was a tough one. My team is composed of all women except for me (yes, lucky me ;)) and though I have met many of them in the past, I really met all of them for the first time in Feb of this year, just prior to my diagnosis. Naturally, the news was really hard on them and there were no dry eyes in the room though I wish I could have been in the room to feel their love and support. Later that morning, I would need to repeat this for my colleagues in the Ottawa office. Again, it was hard news but this time I could feel and share the love which helped me through it. As this was a very emotional day and, combined with my lowered energy levels, I went home early and tried to work from home the rest of the day and week. I was really surprised how quickly I had lost my energy levels and motivation in the span of just 2 weeks. It was very tough on me mentally to deal with this as I have always been a fighter and am usually able to fight through things like this.
Leading into my first chemo treatment, my symptoms had been incredible. Nothing like the last time. This time around, I was very fatigued, in pain, diarrhea and very scared. I could not sleep on my back as the pressure of the tumor was too much and would hurt and impede my bowel functions. By this time, the tumor was sticking out of my abdomen. MA said that I looked and felt as if I was giving birth as I had similar symptoms and the parts of the tumor that were sticking out actually looked like an arm and elbow. If this is how I am going to be for this round, I was not sure how I was going to maintain my strength and positive energy to make it through this fight. This added to my fears even more!
My first chemo day was Tuesday, Mar 26, what a day! Going into this session, I was not as positive as I was the last time I fought cancer given all that was going on. Also, this time around, I was not at the nice Cancer Treatment Center at the Ottawa General Hospital but in the medical daycare room which is more cold and clinical. Not the start I was looking for to get me back into this. However, this treatment was amazing, almost right away! Within hours of this treatment, I could visibly see the tumor shrinking. The part that was sticking out of my abdomen was getting smaller and I could feel the tumor getting smaller. Many of the symptoms I had going into chemo were going away quickly and I was getting some energy back. Total change in attitude! Within 2 days of the treatment, the mass had dramatically been reduced based on what I could feel. I did not get too many side effects from the chemo either, to start. The best part was that I was able to make it to my Thursday night hockey and, if you were a reader of my last blog, you know this is very important to me. My only real symptoms I had were again from the steroids they were giving me. I was getting a lot of acid reflux and burping from it but, worst of all, I was also getting uncontrollable and violent hiccups! I could deal with the burbs and heartburn but the hiccups were too much! I tried every trick in the book and nothing was working.
Then there was a life changing moment. As I mentioned, I made it to hockey that Thursday and I am so glad I did. It was our last game of the winter season so there were more at the bar afterwards to celebrate the year. I was sitting with one of our goalies who I had not really chatted with much throughout the year. This was probably the best seat for me but I did not realize it at the time. Naturally, my hiccups were crazy at the bar and I could not control them. Steve, our goalie, mentioned that his wife recommends taking peanut butter to help relieve them. I was very skeptical but after driving home with the hiccups that were lasting over 1h, I was willing to try anything. I reached into the cupboard and grabbed the Costco sized peanut butter jar and a tablespoon and scooped a generous portion of PB. To my amazement, the second it hit my mouth, the hiccups stopped! I could not believe how quickly this magical cure worked. The hiccups came back in the middle of the night and I did the same thing again and it worked miraculously! So, for the next day, I was scooping PB to relieve these symptoms. I am glad that this was the last day of the steroids as by Saturday, I was off them and the hiccups stopped.
This first weekend of chemo/last weekend of March was not my best though. With all the chemicals that were pumping through my body and their withdrawal symptoms, I had a very hard weekend emotionally. I was very depressed most of the weekend which was not helped by the shitty weather we were getting. By Sunday night, I had a panic attack in the middle of the night and felt like I was fighting to breathe. I did not realize what was going on and was getting very anxious. I had the worst sleep I have ever had, barely sleeping. I was also stressed by the fact that I had another early morning test at the hospital and was going to be going into work to drop off my sick leave papers and needed to see the gang. Monday morning, I was a mess. I was shaking and stressed and was not sure how I would be able to go through with doing this test and then going to work. I kept telling myself it is only 4h and I could do it but I was going to be alone as MA had clients coming to the house so I needed to drive myself. Of course, I over stressed myself about how the day would go. The test I was going through was to check my renal function. The tumor was pressing up against one of my kidneys so they needed to assess how well it was performing. This was the best test I could have had to help calm me down. All I needed to do was lie down while the machine took pictures for 20 minutes. The constant churn of the machine was very soothing and I literally fell asleep on the table during the test. They needed to repeat the test with a different reagent so I slept some more. It was exactly what I needed to get my head back and relax. After the test, I went to work and visited with my old friends. It was great to see them but still hard. As I was not still in my best form, my voice was weak and I struggled to speak. I never suffered from this before so it was a bit of a shock. After the visit, I went home and rested for the rest of the day.
The protocol for this round of chemo is different that my last one. This time, I need to get chemo on Day 1 and Day 8 of each cycle and then I get a week off to recover before restarting the next cycle. Day 1 chemo is more intense and has more effect on my tumor that the Day 8 treatment but the Day 8 treatment is much quicker. On Tuesday, April 2, MA and went to the General for my next treatment. Since the nurse complained on Day 1 that I was dehydrated and she could not get a good vein, I foregoed the morning coffee for water so that I could plump up my veins for the procedure. We headed to the hospital so that I could go to “daycare” (I feel like a child when I say that) and I can get stabbed and pumped with more chemicals. While MA was waiting for me to complete the procedure, she kindly offered to get me a Timmies, not realizing how busy they are at a hospital. Needless to say, it took her over 40 min just to get a coffee which I was very grateful for as it was very good but I did feel bad for making her have to wait so long. The rest of the week was pretty uneventful. I spent most of my time lying on a couch watching TV. I have so little energy that I cannot even make dinner, which has been hard on me as, you know, I so love to cook. I am very thankful that MA has really stepped up. She has been making some very good meals and dealing with my “cravings” very well.
Going into my last week of Round 1, my recovery week, I did not do too much. I was focused on getting rest and building strength for the upcoming weekend. Our extended family decided to celebrate Easter a weekend early for two reasons. First, I would be at my strongest weekends as the next cycle would be starting again on Tuesday and, secondly, we were going to go to a celebration of life for my cousin who passed away in Feb. Though it was a long haul to North Bay, I did drive all the way on the Saturday. I got a bit of rest when I arrived and then we were off to see my uncle who was in the hospital. He was not doing well as he too has been battling cancer for some time but he was not winning the war this time. It was great to see him and the cousins who were there as I had not seen many of them in a little while. We picked up some Chinese food for dinner afterwards and Marc and I watched hockey that night. The next day, all 5 girls made brunch for the family prior to us getting ready for the celebration of life. Prior to leaving though, we received an unexpected visit from my uncle Richard, Leslie, Colette and Scott. They had also come down for the day to go to the celebration. By this point, I was getting a bit tired and we were not yet at the memorial. I was a bit nervous as I was worried that it could be a long day as many there would not have known my situation and it could be a long and emotional day. It would only be 3 hours but I still had to travel back to Ottawa afterwards. I was able to chat with many people and let them know what was going on, briefly. We only stayed for about 2h and then MA drove us all back. At that point, I was at my limit and needed to rest. It was a long weekend but I am glad I made it and was able to see everyone.
Last week was the start of Round 2. Monday was a rest day and Tuesday was chemo day. I visited with Dr. B-B on Monday and we were able to chat about all that was going on with me and work on getting some drugs to help with the hiccups and the anxiety. Again, on Tuesday, I avoided the coffee in the morning to get me hydrated for the procedure and then rested for the rest of the day. Like last time, I could immediately feel the impact of the chemo drugs on the tumor and could feel it getting smaller. Wednesday, April 16 was a rough day though. Decided to have coffee in the morning and discovered that it is not the best thing for me while I am on the steroids. I believe there may be a causal link between the coffee, the steroids and my hiccups! I had them going all day and, this time around, the PB was not working. My doctor had prescribed a drug that would help with them but it makes me very drowsy and I cannot drive for 6 hours after taking it. This was not the remedy I was hoping for though I used it anyway before bed. Another rough part of this day was that I got the news that my uncle, who I just visited on the weekend, passed away. I was very sad to see him go as he was not just my uncle but also my godfather and I will miss him terribly.
On Thursday, I decided to test a theory. I decided to not have coffee and see if the hiccups would be better. I figured the caffeine withdrawals had to be better than dealing with hiccups. Sure enough, it seemed to work. My hiccups were minimal all day and did not really show up until after hockey on Thursday. This was good timing as I could take this “knock out” pill and go to bed knowing that the hiccups would be dealt with while I slept. I proceeded to do the same on Friday and avoid the coffee and, low and behold, the hiccups were kept at bay. Success! I may have a solution to these annoying hiccups. Luckily, I only have one more round of steroids and the potential for hiccups but this is looking very promising.
We did not have a very healthy house last week. As we were leaving from North Bay, Genevieve started to catch a flu that kept her home from school all week. Later in the week, Isabelle picked it up as well so she stayed home for the remainder of the week too which was too bad for her as she was planning to attend a major provincials volleyball tournament in Waterloo over the Easter weekend. Late in the week it was decided that she would not be in any shape to play at the tournament so it was decided that both her and MA would stay home for Easter. This was great for me as I would have the family around for Easter and my birthday weekend. Unfortunately, I had already made some plans for my birthday, which was Easter Saturday so I had a full day mapped out. I needed to give blood on Saturday (could not do it on Friday due to the holiday) so I was up early to get that done and then a quick nap. Afterwards, I was off to my favorite cooking store where they were having a course on pizza making with a special pizza oven. The pizzas were great and I loved the oven and need to get it but it will not be here anytime soon as it is a great toy that I cannot afford right now. After that, I was off to the Ottawa 67’s hockey game for some afternoon playoff hockey with my buddies. Another great win for the team (10 wins in a row and no losses in the finals, knock on wood) and I was happy to be there to watch it live. I got back home where MA made me a wonderful lasagna for dinner and magnificent carrot cake, made by Genevieve’s friend Pat for dessert. At this point, I was exhausted as I did too much but I was so happy to have the entire family around for my birthday that it was well worth it.
As I write this on Easter Monday, I am going to take it very easy and rest as much as I can. My niece Olivia and her boyfriend are coming by for turkey dinner. It will be great to see them and catch up. Tomorrow is Day 8 of round two so off to the hospital for a quick chemical injection and then more rest for the rest of the week. Now you are caught up from the last few months. Now that the group is setup, I will try to post more frequently and no so long! 🙂 Feel free to reach out anytime. If I am not able to respond right away, please do not take offence. I am trying to manage my strength but I promise I will get back to you in due time. I really appreciate all the heartfelt support and best wishes.