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.

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.

Books I’m Reading

Am reading this.

Just finished reading this.

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.

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.

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!

Books I’m Reading

Am reading this.

Just finished reading this.

New York’s a Whole Other World

I don’t understand people from New York. Here’s an example. I know a woman from New York. She’s lived in Phoenix about seven years. She wants desperately to go back to New York. The other day, I asked her why she hated Phoenix so much.

Her: I can count on one hand the number of five-star chefs in Phoenix.

Me (staring at her incredulously): I don’t know of anyone in Phoenix who cares whether a restaurant has a five-star chef. You can get great food at a restaurant that does not have a five star chef.

Her: I just bought my [seven-year-old] daughter a bathing suit that has a pattern that is a fake Pucci design.

Me: Okeh.

Her: My daughter doesn’t know it’s a fake Pucci. She doesn’t know the difference between a real Pucci design and a fake one.

Me (staring at her incredulously): I doubt any seven-year old knows the difference between a real Pucci and a fake Pucci.

Her: In New York they do.

Me (staring at her incredulously)

Her: New York has a lot more museums that Phoenix does.

Me: True, but how many times a year would you go to a museum -- five? ten? Even if you go to a museum once a month, you wouldn’t go more than twelve times a year. For all of the money you save not living in New York, you could fly there once a month and stay a couple days and go to a couple museums. Plus, you could fly to Los Angeles or San Francisco and see the museums there.

Like I said, I don’t understand people from New York.

Books I’m Reading

Am reading this (again).

Just finished reading this.

To Pee or Not to Pee

Remember back in March when I wrote about my feet swelling to the size of a loaf of banana bread? Yeh, well, about that. In the ensuing months, my feet swelled even more, then my ankles, then my calves, then the lower half of my thighs, then the upper half of my thighs.

In all, I accumulated 24 pounds of water weight before I decided to put a stop to it. I demanded a two-week break from chemo (my doctor said it was fine as my numbers were so good) and set about trying to stop the water weight (known in medical circles as edema).

We had already spent two months adjusting my chemo doses to no avail. We added a diuretic (to make me pee) and increased the dose with no success. So, during my break, I had a “come to Jesus” talk with my kidney doctor and he prescribed me a different diuretic. Guess what: the water weight started pouring off. In about two weeks, I’ve lost 14 pounds. I still have ten pounds to go (to get to my pre-chemo weight) but I’m confident that will happen.

Here’s my dilemma: I go back on chemo in a week or so. I assume the edema will return. Perhaps the water lost by the new diuretic will counter the water gained by the chemo. I know it will be a delicate balancing act, but it’s something that needs to be done. I refuse to gain weight ever again -- even if it’s only water weight. I struggled my whole life with my weight and only in the past decade or so got it down and under control. It’s still a constant battle.

Listen: edema is not to be taken lightly. All that extra weight is bad for my heart (remember my heart surgery in 2015?) and other organs. Not to mention whatever damage is being done to my legs. I understand edema is often a companion to chemo treatment; but really, it’s not acceptable.

So, fingers crossed that I can establish a kind of edema detente, to keep up with the chemo yet not incur additional problems from the water weight. Right now, I’m cautiously optimistic.