Over the years, in past columns, I have mentioned that I have a blood cancer called multiple myeloma. It’s the medical term for cancer of the plasma cells in the bone marrow that produce the body’s white cells, the “army” that fights off invading infections, viruses and bacteria.
I was diagnosed almost eight years ago, and as you can imagine I have spent quite a bit of time as a patient – mostly out, baruch Hashem, and more recently in – for 12 days in Toronto’s world renowned cancer hospital, Princess Margaret.
I chose to have my second stem cell transplant at the hospital. My first one, over seven years ago, was outpatient. I would go to the hospital everyday, initially for the super chemo that annihilated my red cells, white cells and platelets; then the infusion via IV of my stem cells – (home grown, I was my own donor) and then for daily bloodwork and check ups until I was deemed healthy enough to go back to my monthly bloodwork and evaluation by my myeloma oncologist.
Hence, over the years I have had many interactions with the many professionals involved in my care – from blood technicians, nurses who administer the chemo, nurse practitioners, the oncologists and their fellows – doctors specializing after they complete their residency.
I realized that I should be a “patient” patient – I’m not the only person being looked at and should wait my turn. But I quickly learned to ask questions and to stand up for myself and get an explanation for what was being done to me, if it didn’t make sense.
Initially, my first encounter when I started this journey, was getting bloodwork. First it was weekly, then monthly and eventually every two months, depending on where I was in my treatment. I always made a point of thanking the phlebotomists (who I secretly called vampires) for getting up early – typically their shifts would start at 7 a.m. – pointing out that without the bloodwork results, the doctors would not be able to proceed in their treating of us. Validating their contribution uplifted them and I knew that they would make sure my vials of blood would definitely get to the lab in a timely manner. I would also reassure them that I tolerated needles well and not to worry if the first jab didn’t work and they would have to poke me again.
Part of getting prepared for a transplant is to have weekly chemo and immunotherapy for a few months. Each week I would get a different nurse and some were all business and some were friendly and we would chat. Some were flexible about the protocol – insisting that I got weighed and my height measured even though I didn’t think my height had changed overnight; others let me go without waiting the 20 minutes to make sure I didn’t have a bad reaction – typically an allergic reaction to the chemo. Others insisted I had to stay. Instead of protesting that after many weeks of the same dose, I obviously was tolerating the drug, I complied.
Unless I was being subjected to a protocol that made no sense at all. And I had to self-advocate and be assertive.
After years of being on a maintenance pill that worked well in keeping my myeloma at bay (post my 2018 transplant) it was deemed I should have a second one. In late summer 2024, I stared a new chemo cocktail with a drug that had proved more effective than the one I had been put on in the months leading to the first transplant.
The nurse insisted on giving me an anti-acid reflux drug via an IV. I told him it wasn’t necessary since, baruch Hashem, I’ve never had an issue with it. He insisted that I take it since acid reflux could be a side effect. He mentioned this same drug could be taken orally as a pill but protocol was they insert an IV in my arm – what I viewed as an unnecessary and invasive procedure. I refused both the IV and the pill, as well as two of the four anti-allergic pills that was part of the cocktail. I explained that during the first transplant, the nurses were about to call a CODE BLUE because my blood pressure had plummeted to 40 and they couldn’t find a pulse.
Out of fear I could have a potential allergic reaction to the preservatives my stem cells had been floating in, they had followed protocol. But one size does not fit all – it had been decades since I had had an anti-histamine, and the standard dose had stopped my heart and put me in shock.
I wasn’t going to allow that to happen again. Hence I refused, which is my right as a patient.
Weeks later when getting chemo, the nurse administrating it was puzzled why I would be given an IV for a single drug when it was available as a pill I could swallow. It would only be reasonable if I was given the chemo through an IV. But my treatment involved two injections on either side of my stomach.
The fellow who had organized the chemo subsequently gave me the cold shoulder (I had called an oncologist friend for his advice when I resisted the IV and anti-allergic meds) but I wasn’t interested in being his pal – I was there to heal to the best of my ability.
On 2016, a study by Johns Hopkins University concluded that the top three causes of death in the United States was heart and stroke, cancer and medical error.
As a patient, be polite, cooperate, self-educate and speak up!
