Well, the good news is that I have made it past Day 14, which in a Car T Cell protocol is a benchmark day. Research/History of the protocol indicates that the possibility of serious side effects (CRS and/or neurotoxicity) decrease dramatically after day fourteen. Hooray! I am seeing a distant light at the end of the CAR T Cell protocol tunnel which I have been traveling through for about the last 2.5 months.
Since arriving in Denver, I was given three doses of chemo and two days of rest before the modified T Cells were introduced into my body. As expected, three doses of heavy-duty chemo were tough. I suppose if I tolerated chemo better it would not have been too dreadful, but I do not. Getting the chemo was easy. Living with chemo was difficult. The two days of rest after the chemo were welcomed.
On the sixth day I received my modified T Cells.
Getting the T Cells is the sum of the actual Multiple Myeloma/cancer treatment.
What happens after getting your cells back is directly associated with surviving the process. The activities after you get your cells back are about managing the potential side effects of the drug treatment that comes with the protocol.
After chemo, I had little if any immune system. Being mindful about avoiding germs was/is especially important. All activities were/are designed to minimize exposure to germs.
There are two critical components of your health that drive the recovery bus. The first is your blood ANC (Absolute neutrophil count) number. The second is your body temperature.
The ANC number is an indication of your immune system strength. It is a good gauge as to how your body is recovering from chemo. Your temperature is used to reveal any possible infection/virus/problem you may have picked up with your compromised immune system. A fever is to be avoided at all costs. Protocol histories indicate that a fever is almost inevitable however and mine showed up on day ten post- T-cell introduction. Into the hospital I went for two and a half days. After numerous bags of “stuff” (all good for sure) were put into me I was allowed to go back home (we are in a hotel room near the hospital). Not too bad.
So, this is where I am today - day seventeen – waiting for day thirty which will be when I am allowed to go back home.
The physical “get out of bed and go to the clinic every morning for blood draws and hydration” steps that occur during the first 14 days do not define the entirety of the experience. The experience also involves both your mental as well as your emotional state of being. I had to work at staying positive and enthusiastic and to not concern myself with anything other than the current day.
There are no answers as to the effectiveness of the protocol at this point. That will be determined after a bone biopsy at about day ninety. So, you just wait and keep your fingers crossed that your response is as desired.
It is difficult to put into words the anxiety or stress that comes with this uncertainty. I am in an unfamiliar place.
I have a strong belief that this protocol will work and provide me with a measure of relief from cancer treatments. But ……. in life there are no guarantees. I, as well as the doctors, loved ones, friends and others all hope it works. Historical evidence indicates it will. However, …
Through this process, I have really gained a sense of a bigger picture that is in place. So many people have entered my life for the purposes of keeping me moving forward. I have found that everyone is “pulling on the rope together.” It is utterly amazing.
I have also been made aware of the many uncertainties that permeate the process. The is no indication that guarantees are present. Good historical information and previous good clinical testing results are evident. That is as definitive as it gets.
I must accept that I am just “along for the ride.” I must remember I am not in charge or in control of what is taking place. Faith in the excellent doctors and nurses, and others caring for me had/has to be adopted or I would go crazy.
The gratefulness that I feel when realizing so many have worked so hard for my benefit in tackling this form of cancer is other-worldly. I cannot describe accurately how “small” it has made me feel. I am very lucky. I have wondered on more than one occasion what I have done to deserve so many gifts from so many people.
What I have gone through and what I am going through deserves never to be taken for granted. This is very important.
I will let you know how I progress. I welcome any feedback from others who have been through this or are working toward this protocol.
One thing I am certain of: All of this is soooo much larger than I.
On to day eighteen.