Surviving Cancer

As if my situation didn’t suck enough already; today, it managed to get worse. For those of you who do not remember, it was back on January 5th that I had a bone marrow biopsy. This is when they discovered the MRD (minimal residual disease.). At that point in time the blasts (cancer cells) were minimally found in the “flow” or more liquid part of my bone marrow and there was only 1% identified in my actual marrow. From there it was decided to do the CAR T-cell treatment. My doctor originally was saying this treatment would happen in weeks, mere weeks. Not months, like it has been. Due to unforeseen issues with health insurance coverage, my treatment was delayed, and for some reason even further delayed when it was dang near a month after the insurance issue was resolved that they got me in for my aphaeresis or the collection of my T-cells. Add another 5-6 weeks onto that for those cells to be shipped off and made into CARS, and now, here we are today, 3 months later.

A lot can happen in 3 months. Including cancer growth, duh. While my health insurance bitched about wording and presentation in my doctors initial coverage request for CAR T-cell treatment, my cancer was growing. During the 4 week wait to collect my cells, my cancer was growing. While my cells were being made into CARS, my cancer was growing. I had another bone marrow biopsy last week, on Friday, as part of my work-up for this treatment. Results came back highly unfavorable, showing 45% blasts in my marrow. My cancer grew and multiplied during those 3 months and turned my marrow into nearly half cancer cells, when there was a mere 1% in January. Why God? Just why?

Just thinking about this fact alone is enough to make someone sick to their stomach. At least that’s the reaction I had. That, along with a waterfall of tears. If this wasn’t enough, I got a call from my doctor today. He basically said that because my marrow is now at 45% cancer cells, I now need to do this treatment inpatient. This was the one tiny strand of hope that I was hanging onto for this treatment. The hope that I would get to do this treatment outpatient. And up until today, that had been the plan. But now I will start chemo on Friday, and have it, Friday, Saturday and Sunday. I will have a rest day on the 11th (my son’s 3rd birthday) and then be admitted to the hospital for my infusion of the Car T-cells on Tuesday April 12th. I will once again miss Easter with my children, as was the same last year.

Don’t get me wrong, I am thankful my doctor is only looking out for my best interest. He explained that the increase in cancer cells puts me at higher risk of having potentially life threatening side effects, that if not caught quickly could be detrimental. I will remain in the hospital for 1-2 weeks, give or take, depending on how my body reacts to the CARS. The hospital is my hell. The food is absolutely cringe worthy. Visitor restrictions are still in place, so I am unable to have overnight visitors and there are no children allowed to visit. The two very things I need the most when I am in the hospital. I absolutely dread the nights, and going weeks without hugging my children is torture for this mama.

The whole apartment thing is a mess, and we will likely be paying to rent on this apartment for a period of time that we don’t need. I. just don’t know how much more I can take. In all honesty, I am quickly losing hope and faith that I am meant to continue to walk this Earth. I know this is a very promising treatment and I am trying to stay optimistic and positive, but when so many things continue to work against you, it becomes so very hard to remain strong. Once all the news from this day has had a chance to sink in, I think I will come around and be just fine, but I am still in the thick of things. I know my support system won’t let me stay here (in the thick) for long, and for that I am grateful. It is my children, my husband, my family, and each and every one of my followers who provide me with the strength, hope and faith I need to continue on.