Toronto, December 20, 2022 – After 3 years of the myeloma behaving, I relapsed and the cancer came back raging in November. And today, Nagib and I found ourselves back at The Princess Margaret Cancer Centre (PMCC) on the 4th Floor that we associate as the Chemo Floor. It felt strange and familiar at the same time.
It started with the medication that precedes the treatment. You know that sign you sometimes see on the streets of Toronto in the winter when you are trying to park your car? The one that says something like, no parking during certain times, parking only with a permit, no parking on one side of the street between November and April, etc. That’s how I am feeling about my new medication regimen. There is medication I have to take two days before treatment, medication to take the day off and the next day of treatment, medication for 3 weeks on and 1 week off (Revlimid), medication to be taken with food, medication only available at the Hospital pharmacy because it requires special care. Medication to protect the stomach, to prevent viral infections and to prevent blood cots. It’s going to take a few weeks to figure this out using the excellent calendar that PMCC prepared for us.
Today was Day 1 of treatment. The past two weeks have felt “heavy” and I found myself feeling a lot of emotions – sadness, loss, excitement, uncertainty, teary-eyed, hopeful, ready. I allowed myself to feel and express all these emotions as I prepared for this new chapter in my life. My daughter Sabrina, Afzal and Amaal surprised us by visiting the day before treatment and bringing a thoughtful basket of goodies – a robe, socks, hot chocolate, a mexican blanket and a hope container.
The part I loved most about my treatment was that the Daratumabab (Dara), the smart immunotherapy, was administered to me subcutaneously (Sub-Q) as an injection in my stomach. In the past, this treatment was only covered if it was administered through an IV. For me, that would have meant getting a PICC line as my veins are hard to find, staying in the hospital for many hours while the IV went through my body, and grappling with infections and inflammations. Getting this drug through Sub-Q means I can be in and out of hospital in two hours and not have to deal with many pokes to find my mischievous veins. Unfortunately, I did get a small reaction from the Dara today. The injection site got very red and the redness spread through my abdomen. I was given Benadryl by IV (one poke!) to resolve this issue and slept for a couple of hours while listening to Rachel Maddow’s podcast. Today I also started Dexa and am feeling beyond energized right now (I wrote this post at 1:58 am!). I could not have functioned today without Nagib. He held my hand, stayed by my side as much as he could (even though he was not allowed to be there due to COVID rules), managed my medication, stopped by on our way home to pick up a Greek souvlaki on pita bread to make my tummy happy (dexa makes you hungry). I love this guy!
One unfortunate piece of news we received is that our Insurance does not cover Revlimid so we have to use the Trillium program which is income-tested. We will be out-of-pocket some $11,000 for the year. But when we put things in perspective, the cost is only a fraction of what the total cost of treatment for Dara, Revlimid and other meds.
Tomorrow, we welcome Shayne, Cherrelle and Mos to Toronto. In the next couple of days we have plans for tobogganing, tree trimming, hot chocolates, long conversations, winter fairs, snowball fights, family and friends, a two-day cottage get-away and heartwarming hugs with them and with Sabrina, Afzal and Amaal. I am anticipating that it is going to be a crazy, wonderful time of togetherness. My heart is feeling so full right now. Day 1 of treatment is behind me and I am feeling ready to tackle this phase of the journey with a huge dose of hope.