On November 30th 2022, a couple of months after dragging myself and my bike from Vancouver up to Whistler Village, I was at the Mayo Clinic in Jacksonville, Fl, ready to start six months of chemotherapy.
Waldenström’s Macroglobulinemia is rare lymphoma which basically (in my case) is a steady increase of a protein produced in the bone marrow, IgM. A normal level would be 37-286 mg/dl, mine were sitting at 5,230. The best description of the disease I’ve seen is from Dr. Morie Gerz and his garden analogy. In your garden you grow some grass, some flowers, some vegetable’s. All is good but you start to see a patch of weeds. For some reason the weeds keep growing, taking up more space and lessening the yields and space for your grass, flowers and veg. Over time, unattended, weeds continue to grow with the garden unable to fight them as normal. Eventually you decide to treat the weeds and cut them back, allowing the garden to once again grow the other things you actually want. So, for me the IgM are the weeds and the Fruits, veg and grass are the other immune system proteins we all need. It was now time to kill the weeds.
I had discussed a few times with Dr. Sikander Ailawadhi (one of the top Waldenström’s specialists in the world) my doctor, when and what type of treatment we might try. WM is rare disease which has no set protocol. The disease varies from patient to patient and there are not enough patients to warrant Big Pharma to spend millions on research to find a cure or set standard protocols. Obviously, there is research and drugs being developed all the time and some great progress has been made over the years since I was diagnosed in 2017. However, these are often independent studies, trials or useful side effects from other cancer drugs. So, I actually had a choice. We could use a new drug, often easier on the body but without years of data to understand any long-term issues or side effects it might have in the future. We could use an older type of Chemotherapy, tougher treatment but years of data to know maybe what to expect. There were a few more choices but I decided that I preferred to go with a tried and tested older chemo (even if it was rough for a few months) and not be on any maintenance pills for my life following the treatment.
So now I was sat in a room with Deirdre at the Mayo, IV needle in a vein in my hand, waiting to poison my system with some potent “weed killer” (Bendamustine). It is a slow process. Watching a couple of bags of clear fluid drip into your system over about 6 hours. At the beginning I felt tired from the pre-meds which are given to lessen the chance of reactions to the chemo drugs. Then you just sit and wait to see how your body reacts to basically adding two bags of toxic chemicals into it.
As previously being a nurse and working in an oncology hospital, I’ve been on the other side of this. So, I knew enough to know each patient can react differently. For some it’s really tough with nausea, vomiting and other reactions, for others it can be nothing more than some fatigue and/or anything in between. During my first infusion the only thing that happened was I started to feel a bit flushed and weird when the speed of the drip was increased for the third time. Having had something similar experience with the Rituxan treatments I had a few years early, when I got an allergic rash and the rigors, we slowed the rate back to the previous and all was good. It might take a bit longer but without any issues. The first round is a two-day affair, so again it was more of the same the following day while we watched more bags slowly empty into my hand.
That evening we returned home with nothing more than tiredness as a side effect. I can’t say I had nothing in the way of side effects from the chemo at this stage. I was tired and not up to doing much physically but I didn’t feel bad which was good in my eyes. We returned for round two on the 14th December and round 3 on the 28th and 29th. All was becoming routine and again no real side effects to talk about. On the 3rd visit just after Christmas we took the nurses two large boxes of cookies from Crumble (Deirdre’s idea). I remember myself working as a nurse through Christmas and how some treats in the staff room could make it feel a little more like a holiday. They went down well.
The next 4 rounds were once a month and all went well. March 24th, my Birthday was my final Chemo. After it was done, I got to ring the bell in the reception/ waiting are, to signify my chemo was done. I thanked all the nurses that came out to witness this but did say despite all being wonderful I hoped I didn’t see them again (i.e. no more chemo).
I had actually managed to get on my trainer indoor bike a couple of times over the 6 months but nothing much at all, so now I was determined to get back in the saddle and begin the task of building myself up again.
The chemo worked. Over the next year we watched my IgM numbers fall and eventually settle well within a normal range. Success and better than I could have expected.
