The Sweet Spot

May 24, 2019

How do you decide when to start treatment?

Do you wait until you experience symptoms from the cancer?  For multiple myeloma, these could potentially include renal failure, bone lesions or anemia (including hyper hemolytic anemia — which nearly killed me in March 2012).

Or, do you start treatment before the symptoms manifest, when your body is healthy to go through chemotherapy?

That’s the position we find ourselves in.  I asked Dr. Tiedemann point-blank what he would do if he were in my position.  His response, “I really can’t say definitively.  I can make a case either way.”  My myeloma has a personality and a mind of its own.  After it declared itself and made its grand comeback, it has started to behave and the numbers have remained steady over the past six weeks.  Treatment or no treatment?  Some markers lean toward starting treatment immediately; other markers suggest a “watch and wait” approach.  We talked through the options with Dr. Tiedemann until we came to an agreement that we were all comfortable with.

The plan is for me to get a skeletal x-ray immediately to rule out any bone lesions, get bloodwork every two weeks to monitor any significant drop in hemoglobin and pay attention to the M-protein numbers.  And we have a scheduled appointment with the doctor in 4 weeks to revisit the question of treatment date, the sweet spot that is neither too early nor too late.

I am happy with this development.  Starting treatment for myeloma now could impact the regimen that I am currently on for breast cancer as my body would be immuno-compromised.  I also see this as an unexpected blessing of time.  I had fully expected when I went for my appointment today that Dr. Tiedemann would want me to start treatment immediately.  Now I have bought myself potentially another 4 weeks (maybe longer) depending on how my impish, unpredicatable and mercurial myeloma behaves.  4 weeks of time where I had freed myself of all obligations. 4 weeks of no commitments. 4 weeks of bonus time. I am beside myself as I think of all the things I can do during this time.

Perhaps I can use this time for delicious coffee dates with friends. Perhaps I can learn a fun new skill like salsa dancing.  Maybe a trip to Edmonton and Calgary to meet favourite cousins is in the offing. I am excited about a project of decluttering our home from top to bottom.  Or getting a personal trainer for the first time in my life.  Or working on another collaborative recording of devotional music.  I am thinking about a day of working in the garden, planting and pruning,  Or I could binge-watch Game of Thrones, as I seem to be the only one in the universe who hasn’t watched this show.  I plan to read a lot, go to baseball games with Nagib and try new Instant Pot recipes.  The possibilities are endless and entirely exhilarating!

Out of curiosity, what would you do if you had a full month at your disposal?  How would you spend your time and energy?

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It’s all in the numbers

Monoclonal immunoglobulin, or more commonly known as M-protein, is one of the telltale signs of multiple myeloma. I have been sitting at or near zero since my stem cell transplant six years ago.

April 2019

3.2 – my M-protein level detected in June 2018 at a regular bloodwork appointment. Monoclonal immunoglobulin, or more commonly known as M-protein, is one of the telltale signs of multiple myeloma. I have been sitting at or near zero since my stem cell transplant six years ago.

6.5 – my M-protein level in September 2018. Something’s brewing in my body.
Dr. Tiedemann has said not to worry until it reaches double digit numbers, so I take a deep breath.

12.9 – my M-protein level in Jan 2019. I finally muster the courage to tell Shayne and Sabrina.

16.4 – my M-protein level in April 2019. The writing is on the wall. My myeloma is making a comeback. Treatment is inevitable.  4 months of chemotherapy. A second stem cell transplant.  3 to 6 months of recovery. My mind begins recollecting difficult memories of depleted energy, blood transfusions, hair falling out, yo-yo emotions and hospital stays.

“Can I start treatment in August?” I ask Dr. Tiedemann. I had planned a trip to Nairobi in July for a delicious month of hanging out with Sabrina for precious mother-daughter time.  A time to enjoy long hikes and bake muffins, of deep conversations in pyjamas and mini getaways.

Dr. Tiedemann listened to my plan and shared his concerns that if I wait until August, I run the risk of bone lesions and kidney failure, common symptoms of myeloma.

Shayne had the brilliant idea to move my trip up a couple of months. We secured dates for May and I felt a sense of energy and excitement to pack my bags. I’ve always been a believer in “ending before you begin”, and time with my kids in Nairobi would be the perfect way to “end” before I begin a year of treatment.

As quickly as the excitement rose, it burst in a giant, unanticipated pop. At an appointment with my family doctor, Dr. Baghdadlian, the following week, my hemoglobin showed a sudden drop to the 90’s, the nose bleeds began and I started to feel tired. This was similar to how I was diagnosed with multiple myeloma all those years ago. Given my history, my family doctor, who is also an infectious disease specialist, forbade me to travel. I called the kids with the news.

I asked my family for space and permission to just be, without questions or judgement while I processed what was happening to me.  I cried.  I slept a lot.  I prayed.  When I was ready, I spoke to Nagib, Shayne, Sabrina and Afzal.  We talked about options, about how everyone was feeling and how we could support each other.

After nine days, I pulled myself together and started to see my situation in a different light.  On average, a stem cell transplant lasts for 3 years (3.5 years if you are on maintenance drugs).  My stem cell has lasted 6 glorious years without maintenance drugs.  Myeloma is an incurable cancer and there was no question that one day the cancer would come back.  The fact that it took so long to return is indeed a blessing.  Dr. Tiedemann also reminded me that this time I would not need to get my stem cells harvested, which was a huge issue six year ago when my body refused to produce enough stem cells for the transplant.  Now I have a bag of stem cells just sitting in a frozen container on the 12th Floor of Princess Margaret Hospital, waiting for me when its transplant time.

The only question now is when do I start treatment.  Every two weeks, I get bloodwork done that will determine the optimum time to begin chemotherapy.  If I were a betting person, my guess is that I will begin chemotherapy in the next couple of weeks.  In the meantime, I am preparing my body to deal with the ravages of chemotherapy by working out and eating right.

After dealing with 3 cancers, my approach to this latest saga is to succumb and surrender to the will of God, and to do so joyfully.  Mentally, I am ready for what comes next. Emotionally, I am prepared. Physically, I am a bit tired.  Now I wait.

Photo: Cape of Good Hope, South Africa, the most South-Western point of the African Continent, according to the numbers (February 2019).