The last time we updated our blog, we were waiting for biopsy results and a meeting with an oncologist. We were finally referred to an oncologist at Humber River Hospital (HRH) in Toronto on August 24th, an agonizing 22 days after the biopsy. Chemotherapy began on the 25th! The meeting with Dr. P was the first time we had spoken with a doctor other than our family doctor since the c-word was introduced as a possibility. We waited two and a half months for a doctor to say, ‘Christian, you have Light Chain Multiple Myeloma, and you’re beginning to develop renal dysfunction. We’ll begin with four to six 28-day cycles of chemotherapy, followed by super chemo to neutralize your bone marrow, after which the stem cells will be returned via an autologous stem cell transplant (ASCT). There will be maintenance meds for a few months after that. The hope is you will be in remission at the end of 8-9 months of treatment, and that remission could last anywhere from two to three years. Multiple Myeloma is chronic Cancer, not curable Cancer. When it returns, these treatments will be repeated.’ The oncologist also said, ‘to qualify for an ASCT, you need to be under 70 years old, check, your bone marrow needs a minimum of 10% plasma involvement (cancer cells), and you have 70-80%, so check, and you need to look good. You look great! And are otherwise in excellent health. Check! It’s also helpful to have a positive attitude.’
We know that is a LOT to take in! Those rapid-fire 10-15 minutes were followed by skeletal x-rays, a lot of blood tests, meetings with a pharmacist, social worker and dietician and picking up $350 in prescription cancer medications.
In that first week, we drove about 750 km between campsites, friend’s homes and cottages and the hospital parking lot, most of it in highly congested traffic. We have received so much kindness and generosity, including places to park the van and ourselves. Thank you to each and every one of you for every single offer! Our friends Sarah and David have kindly offered us use of their home in Toronto for the duration of treatment, a home base which happens to come with a driveway. It is an easy 30-minute drive from the hospital. In another month or two, we will add a second hospital to our itinerary when we begin to meet with a transplant team at Princess Margaret Hospital downtown. It continues to be our hope to spend Wednesday nights in Toronto, drive to treatment at HRH on Thursday mornings and then hit the road immediately afterwards. We aim to make the most of good weather and camping for as long as possible here in Ontario, September and October, maybe even early November. We did that after the first two chemo treatments, but this third week has been different. More severe side effects from the treatments grounded us here in the city. We are hopeful Christian will be up to wandering after this Thursday’s treatment. We just don’t know. Planning is out the window. If we can travel, we will. If Christian feels well enough.
As you can imagine, we are feeling all kinds of feelings. Grief, for the lifestyle we had planned for, embarked upon and was then interrupted by Cancer. That is a big one. Anger, because, why Christian. Gratitude and love because we know the best people. Happiness knowing there is a treatment available and a light at the end of this dark tunnel. Fear for the unknowns. For not having a home of our own beyond a camper van. Because we dispossessed ourselves of almost all of our furnishings, belongings and means of comfort. It is all just plain overwhelming, mainly because we’ve CHOSEN to live such an unconventional life these past 8 years. There have been what-ifs such as, ‘what if we didn’t sell our home in Toronto back in 2014?’ That one is always quickly dismissed because we wouldn’t have seen, experienced all that we have or met the fantastic folks we’ve met along the way had we done otherwise. And in the face of this diagnosis, we are grateful for every moment of the past 8 years. We also wouldn’t have been able to offer Julie’s dad, Bill, the support we did in the final years of his life.
We are beginning to imagine and investigate a home base in the months beyond remission. We were already considering that for the end of our nomadic period. Where will that be? That has always been the biggest question. We know we would like to live by the water, fresh or salty. We know that place needs to have an excellent cancer care centre. If you know anyone in Canada with Multiple Myeloma who has received treatment and has had a favourable experience, we’d love to hear from you. We are open to living anywhere, even part-time.
Thank you for following along. Rest assured, wanderlust is in our DNA, and our van remains charged and ready to roam. This is NOT the end of the road.
Ps – The Postcard Project will resume now that we are adjusting to our new reality. It is not too late if you’d like to receive a postcard and haven’t signed up. Send your mailing address to: email@example.com. And if you haven’t subscribed to our blog, we’d love it if you did. We promise Cancer won’t be the main focus. For better or worse, our travels for the next while will however be limited to our home province of Ontario. Perhaps our next post will focus on our favourite places and/or favourite campgrounds we’ve visited in the past three months?! Would that be of interest?!