If you know me, you know I hate roller coasters.  And I had been on one for the last three years:  the Chemo roller coaster.  Days of lows (low energy, low appetite, low mood) would be followed by a brief respite before I started the entire cycle over again. I made the most of it, but it wasn’t easy.  As part of my treatment, I was taking mood altering drugs (Dexamethasone, a steroid, and Olanzapine, an anti-anxiety drug given for nausea).  The chemo itself caused bloating, weakness, and an inability to exercise during a good portion of the week.  Exercise releases endorphins, my drug of choice, and I wasn’t getting any.  Weakness made me feel incredibly vulnerable and I crave self-sufficiency. My freedom to travel was centered around my weekly chemo visits so I had to stick relatively close to home .  All of this had an impact:  I was severely depressed.  I didn’t “greet each day” although I tried to post a positive front.  I didn’t care how I looked and I had absolutely no hope for the future.  I anticipated palliative care as my next step and I dreaded and feared the potentially painful, slow decline once all chemo stopped working. I felt like it was all down hill from here out.  I had no hope, no energy and no happiness.

Looking back, I realize I was literally dragging myself through each day and welcomed the moment I could go to bed and enter the land of no thoughts.

And then I received CAR T treatment.  It was really tough at first.  I felt even weaker, lost 8 pounds, couldn’t eat, and I told myself, I would never do this again.  Well, after weeks of pushing myself to walk and then to exercise and finally getting my appetite back, I am in heaven.  I wake each morning excited to greet the day.  I revel in the sunlight and warming air.  I cannot walk outside on a sunny day without a big smile on my face.  I am so happy that I GET to work out, walk fast or do intense gardening chores.  I look forward to doing yoga at dusk and calming my mind and muscles.  I am hopeful for many days of continued improvement in strength and endurance.  I am beginning to pile up a list of adventures that I want to enjoy this summer and hopefully beyond.  And that, my friends, is what I expected of CAR T and why I think it is an amazing treatment.  It gives you a break from the roller coaster of treatment.

More important?  CAR T is working.  My M-spike went from 1.9 to .6 in the first two months.  IF it continues to drop, it bodes well for this treatment being durable – perhaps giving me up to 2 years of freedom from chemo.  I have to be patient because they don’t test my markers very often, but I live in the hope that the next test will show lower numbers than the previous.

So if you are dealing with MM, realize this treatment is out there.  It is scary because of the potential side effects and I cannot say how you will tolerate it because every cancer and every patient is different. But I seem to tolerate it fairly well and by working hard every day, I am recovering from it much faster than others.  I hope they continue to improve on this treatment and that others get to enjoy their life fully without chemo while their own bodies do the job of killing off cancer.

And for everyone not dealing with cancer, remember to enjoy the gift of life.  Carpe Diem,

Love,

donna