It’s 3:30 am, Saturday morning. Guess what chemo drug I’m back on? Dextamethasone; which keeps me from sleeping at night. Seemed like a good time for an update (although I’m not going to actually post this until Sunday).
To quote a line from the movie Ben Hur (and Bryson Cook); Pontius Pilate made the statement that “A grown man knows the world he lives in.” To me this means that men and women need to recognize their environment and what works or doesn’t work for them; things that are good and bad, actions and reactions/consequences, what their responsibilities are for themselves, their families, their employers/employees, no rose colored glasses, they see the world as it is.
It’s a great line. To borrow it and apply it a different way; “Most Cancer Patients understand the world they live in”. For most of us, the reality is, in addition to the physical issues (the pain, exhaustion, weight loss, nausea, etc) that there is always a fair amount of anxiety, fear, uncertainty, inconvenience, and anger (to name a few). For example, our appointment today that started at 7:30 am (leaving home at 6:30 am) that we thought would be a couple of hours-tops, turned into an all day event- leaving at 4 pm (arriving home at 5 pm). Fairly common.
The worse part is the uncertainty and anxiety. I’ve known in my heart of hearts that I wouldn’t be in remission long, my Cancer has been too aggressive. At Dartmouth I went from remission to relapse in the blink of an eye. Things have been better here in Utah. However, after my last round of chemo I got sick; a head cold developed into a mild pneumonia. It knocked me down for a couple of weeks. But I’ve shaken both. However, a couple of weeks ago I started to get sores on my head, three of them to be precise. One on the top of my head, one on my upper lip (hideously ugly- imagine the biggest, ugliest wart you’ve ever seen. That’s what it looks like), and one on the inside of my mouth, on my upper gum. I thought they were ‘side effects’ from all the drugs I’m on. Well, again because ‘I know the world I live in- the Cancer world’, I thought that like most of the side effects I’ve had that they would come and go. I had been waiting for these to go- but they didn’t.
Monday morning we called our Oncologist who immediately called the Dermatologist to get an appointment. At 2pm on Monday I was in their office having a biopsy on the bump/sore on the top of my head. We discover another bump on the right side of my chest, next to my single lumen port. Very discouraging.
We were scheduled for Re-Staging on Wednesday (Labs, X-ray, Neurology appointments, the dreaded bone marrow biopsy, and the equally dreaded MRI). We were also told we would receive the results of the biopsy on my head. The results came in, and it wasn’t good. The bumps/sores are Plasma Cytomas… tumors like the one that lodged itself into my vertebrae, compressing my spine. Obviously, the cancer is back. Again,
very discouraging.
So what does this mean? It means that, once again I have cancer in my bone marrow. It means that, at the moment, my very aggressive Cancer is winning. (On the bright side, the biopsy showed very small amounts of cancer in my bone marrow. It also showed that the lesions on my bones had actually reduced. So that was good news.)
It also means that my chemo routine changes again. The approach has been to hit me with large doses of chemo and then let me recover over six week intervals. Then hit me with another large dose and let me recover. The new approach is to keep me on smaller doses of chemo all the time. I will take three of the four chemo medications orally (Cytoxan, Dextamethasone, and Etoposide). The final chemo is Velcade that I take through an infusion on Fridays.
Here’s the rub… and if I’ve bummed you out too much already, this would be a good place to stop reading. Go listen to happy music or watch a Disney movie:).
Chemo makes you very weak, it lowers your immune system, makes you very susceptible to catching something that is difficult to recover from.
But even worse… generally, Cancer is smart (and my Cancer has proven to be very smart). It quickly learns how to combat or get around the new chemo. It figures things out and finds new ways to grow. Hopefully it takes it a long, long time to catch on this time. Another Miracle would be nice.
Now the $64,000 dollar question (actually with inflation who knows what it’s worth now?)…… Have I given up?
Complicated answer. The short answer is heck no. I have a wife to take care of and kids to raise. I have responsibilities to them (and the church) that I plan to fulfill. That I
need to fulfill. Throughout this whole ordeal I have been full of faith. I’ve always felt/believed that I was going to win. I now know that in many ways I’ve already won. I have a great wife and super great kids. They are strong! Whatever happens, they will survive and thrive. I am still full of faith that my Heavenly Father loves me and knows what is best for our family. We are at peace with that. I’m praying that I have many good years ahead of me (regardless of the medical prognosis). But again I know that I’m in Gods hands and that He knows what He’s doing.
Rest assured, I am going to continue to fight this thing has hard as I can. I’m not giving up! I’ll certainly do my part to beat it.
Again, We Cancer Patients know the world we live in and the struggles that exist in that world. I can honestly say that Cancer Patients are the toughest group of people you’ll ever meet. Football players… wimps in comparison. We tread onto the ledge of death on a regular basis and with great medical teams, most of us fight our way back.
One of my favorite Old Testament stories is that of Moses when he led the children of Israel out of Egypt. They faced impossible odds that the children of Israel just couldn't quite see through, they failed to grasp the big picture, they lacked sufficient faith. When Moses led them to the Red Sea, they were convinced he had led them to their death. Hear Moses’ response: “And Moses said unto the people,
Fear ye not, stand still, and see the salvation of the Lord, which he will shew to you to day: for the Egyptians whom ye have seen to day, ye shall see them again no more for ever. The Lord shall fight for you, and ye shall hold your peace.
Our family will be fasting this next Sunday. Join us if you can.
I’m going to end this very somber, depressing blog. Sorry to bring you down.
On a funny note, I was in Huntsman’s gift shop today and got a kick out of some of the t-shirts for breast cancer. I’ll share a couple:
• ‘Of COURSE there fake… The real ones tried to kill me!’
• ‘Cancer has taken both my breasts, but at least men look me in the eyes now.’
Take Care, We love all of you.
Blaine
