28 June 2016

It's Not Quite Sophie's Choice

I met with my cancer doctor today. Keeping in mind my cancer is not (at this point in time) curable, and will come back no matter what treatments I do, he gave me a choice:

(Time periods are not exact; rather, presented in round numbers to make the issue more clear.)

I can bump up my chemo to aggressively treat my cancer for about six total months (I've already done three). This brings with it the considerable side effects (most notably exhaustion, and the foot and leg swelling). I would then get off the chemo for about six months before I have to resume; or

I can continue the low-dose "maintenance" chemo for about a year. This choice comes with almost no side effects and gives me a better “quality of life.” I would then be off about six months before resuming.

Because my cancer is technically “in remission” and being treated well with drugs, I am (probably) not a candidate for the T-cell transplant (the benefits of which would only last a year or so anyway, then I would need to resume the chemo).

Which choice do you think would be better?

23 June 2016

I wish I had High Blood Pressure

I never had high blood pressure. Mine has always been right around normal -- about 110/80. During the time my heart defect was being diagnosed, my blood pressure fell dangerously low -- at one point it was 75/50. After heart surgery, my blood pressure returned to basically normal.

Then, I was diagnosed with cancer -- and here’s why I wish I had high blood pressure:

After my heart surgery, I was put on a drug to help my heart beat a little slower. This drug also lowers blood pressure.

For my cancer, I was put on a diuretic to help pee out extra water. This drug also lowers blood pressure.

For my cancer, I was put on a drug to help me pee out the mutant protein caused by my cancer. This drug also lowers blood pressure.

I recently was taken off the heart drug and put on a different heart medication to help my heart beat a little more slowly. Guess what? That’s right: this drug also lowers blood pressure.

Although my blood pressure has remained at an acceptable level (about 90/70) it is right on the edge of being too low. This can cause all kinds of problems. If I had high blood pressure, I would be happy that it was being treated and kept under control. As it is now, I never know when I might pass out because it has fallen too low, again.

15 June 2016

Kemo, Kancer, Kardiac, Kidneys

The kancer I have creates mutant protein molecules that gum up the works inside my body -- mostly by attacking various organs, including the kidneys, the liver and the heart. Over time, these proteins will make those organs fail. The kemo keeps these proteins at bay, slowing down their onslaught. I have to visit my kidney doctor and my kardiologist regularly to make sure damage has not begun.

Tuesday, I visited my kidney doctor. He was very pleased on the excellent progress I’ve been making with my kemo. Yeah! Apparently, there is still no damage to my kidneys. Another sign that we caught the kancer early. I recently had an echocardiogram showing there is no damage to my heart. Yeah, again!

Kancer is still sucky, but I guess it’s fair to say I’m in about as good a position as I can be in given the circumstances.

11 June 2016

Grandfather Soldier

My grandfather, Jose Martinez, was 12 years old when he left home and became a student at the United States Indian Vocational Training School -- otherwise known as the Indian School -- in Phoenix, Arizona. After a few years, he left school and enlisted to fight overseas during the Great War. Although closed in 1990, the school still stands, along with a memorial to the students who enlisted.

The Heard Museum (Phoenix) is currently showing the exhibition Remembering Our Indian School Days: The Boarding School Experience which details some of the memories of children who attended -- many against their will or that of their families -- some of these Indian schools around the country.

07 June 2016

Balancing Act

I’ve completed the first week of the second round of chemo and have not gained a single pound (of the dread water weight). I’m cautiously optimistic enough to think that I might have finally found the correct balance between the doses of the chemo drugs, the amount of water I drink each day, the amount of what kind of foods I eat each day (with a special eye on not too much sodium), and the timing of my diuretic. It’s taken a long time to get to this point and, frankly, it’s been exhausting. Every day I drink a little more or less water, I have a little more or less sodium, I change the time I take my diuretic and then wait -- wait until I can weigh myself the next morning to see if I lost, gained or maintained my weight. The next day, it’s a repeat of the same thing to see how my weight reacts.

01 June 2016

Back to the Grindstone

My happy month away from chemo ended yesterday, Tuesday, as I started in on my second two-month round of treatment. The month off (after the initial two months treatment) was wonderful. My energy returned, my taste mostly returned (except sugar still tastes icky), I lost all of the water I retained (24 pounds of it!) and, best news of all, my blood numbers remained good despite not having treatment for an entire month! All of this bodes well for the future.

But it's not all bunnies and ducks. The water weight somehow damaged nerves in my feet (all the swelling pressing on them, apparently) so I now have painful shots of nerve pain randomly in both feet. This is especially annoying at night when I'm trying to sleep. A shot of pain wakes me up and it goes on like that all night. I have to stay vigilant of any water weight to make sure it doesn't happen again. I've got that new diuretic which has been doing really well for me. I can up the dose if necessary to make sure the bloating stays down. And then, I expect the crippling fatigue to return like last time. That is really bad. Not having any energy at all to do even basic household chores.

Even though, overall, I'm doing well and feeling optimistic, there is the overarching reality that myeloma is not curable. I will never be "cancer free," and I will need treatment (off and on) the rest of my life. Sigh!