Sorry for the silence. I am still here, and still kicking, but have been oscillating between three very precarious and varied states for the last few weeks:
- Too tired to log in and write anything
- Too lazy to log in and write anything
- Too worried about worrying you with updates that sound dire because there is no progress.
Well, I am here to share where I am on this journey.
About the treatments
I am undergoing chemotherapy in Birmingham every three weeks. But it isn’t the same thing every time. On odd-numbered visits, I have the one-day protocol known as VAC (which includes that wonderful liquid known as The Red Devil.) On even-numbered visits, we go with something else that includes Ifex.
Ifex is quite corrosive to the bladder, and you can’t even take it all at once like the Devil. It is spread out over five days. So instead of going in for eight hours of chemo, I get a full 40-hour week of it. They also pump my IV with steroids, and bladder buffers, and anti-nausea meds, and saline, and God only knows what else. It ends up being about 35-40 liters over the entire five days.
The first time I did the Ifex (session #2,) I ended up gaining more than 30 pounds in the first three days. That is not a typo. Thirty pounds.
I can’t begin to tell you how bloated I felt, how disorienting it is. Your center of mass drastically changes, and getting around is a chore.
Tomorrow, Monday April 15, I start Round Four – which means I will be floating in and out of that clinic all week.
Getting around and getting by
I do get by with a little help from my friends – rides too and from the clinic, and those who bring me lunch. But outside of that time, I really don’t feel all that sociable. Suddenly being bald and 40 pounds heavier than I have ever been will do that to you.
The complications have come in the form of fatigue, and a persistent cough.
Since starting treatment, I am anemic. Not enough hemoglobin, not enough oxygen transfer, so my heart works harder when I engage in strenuous activity like going up a flight of steps, or walking, or standing. It is no fun.
Also, this cough has been following me around for a while. It is more of an allergy cough than it is productive chest cough, with mucus. But to be safe, I had been on a couple of antibiotics, stayed away from humans during my low-immune time, and have been single-handedly keeping local pharmacies in business with my purchases of cough syrup and lozenges.
Long term outlook
So, here is where we have some clarity with the game plan to excise McMurray from my existence.
At the end of the month, I will come in for an MRI, and we will have a basis to compare the mass from December until now. If my surgeon sees enough retreat that he thinks we can go get it, then I will have about five or six weeks to recuperate before surgery. If the tumor is not sufficiently small, then we do rounds Five and Six, then check again.
Here is where it is interesting. If they examine the tumor and find that it is mostly dead, that means the chemo works and I will have another eight rounds of poison. However, if the chemo has not been effective, then the mass is not as dangerous as we thought, and we will simply finish off the area with a couple of shots of radiation.
Either way, I still have a few months to go.
What I have is considered a “Ewing’s-like Sarcoma.” It typically hits men in their teens and early 20s. Outside of that age range, there are about 20-25 cases a year in the United States. (Even my diseases prove that I am immature.)
It’s funny, because I get to see a lot of student doctors coming through, who remark about the extra research they had to do on my case.
By the way, my doctor is outstanding. He has only done sarcoma and melanoma his entire career. He really is the go-to guy for what I have. When I am in the infusion center, it is common for there to be people there from many other states. I am lucky.
Thanks and thanks again
I can’t tell you how much I have appreciated the cards, and the unexpected packages. And the notes and messages and phone calls. I am truly blessed to have all of you in my corner.
Now that I know what to expect from these rounds of chemo, maybe I can overcome the fatigue of bloated laziness and be a better correspondent.
And maybe soon we can have some better things to talk about.
Love to you all…