Time for Another Hike

My four sons, son-in-law, and daughter. Aren’t they handsome….and beautiful?!
Our only daughter was married on June 3rd. It was such a wonderful celebration. She was married in the Salt Lake LDS temple. The ceremony was beautiful, simple, and sacred. We haven’t felt like we were losing a daughter but that we are gaining a son.

It’s been six weeks since my last round of chemo. A serious break after 18 months of treatment. After explaining to my doctor all of the upcoming events happening in May, he agreed to let me take time off of treatment. I was desperately hoping he would say that nine months of maintenance was plenty however that wasn’t the case. He did say that we must always weigh out treatment with quality of life issues. Well I must say that “my quality of life” has needed some adjustment so it was wonderful to take a “breather” for six weeks!It has taken a good month to shake off the fatigue and some of the “chemo brain.” Just in the nick of time I have been able to enjoy some wonderful events with my family.
Now it’s time to jump back on the chemo roller coaster. I head up to Huntsman on Monday to begin treatment. I will start with labs. They will be checking to make sure all systems are “go.” Then the games begin. An IV with some saline, a quick push of Velcade(chemo) and a three hour infusion of Aredia-a bone hardening infusion. I will also start back up on Dexamethasone and a new drug called Revlimid. I am not looking forward to the next three months. It is so hard to start back. This time I know what I am getting into! …so wish me luck, keep me in your prayers, and I will get back on my hiking boots and climb a little further up this mountain.

Crank-a-palooza

I went for labs yesterday morning. I’m almost equidistant from the downtown hospital and the suburban satellite clinic. I try to do ecerything except transfusions at the suburban clinic, not because of the distance, but the time/traffic/hassle of shlepping downtown, plus having to pay for parking. I can’t believe that after paying thousands of dollars for chemo, transfusions, or whatever, they ding the patient for parking!

Anyhoo, it’s not a long drive, and it’s on a major thoroughfare, so I can usually get to the suburban clinic in 10-12 minutes. On the way there, and on the way back, I passed major, multi-car, ambulance-requiring accidents. Coincidentally, they were both in the opposite direction, so I wasn’t caught in the ensuing traffic snarls, but it was frightening, even as a passer-by. And a reminder that we’re all a second or two away from tragedy caused by a texting moron, a chattering bimbo, a distracted dingbat.

Although I was “borderline” I decided to get a transfusion today, and another dose of Aranesp. The transfusatorium was mobbed and I couldn’t get an appointment until 1pm. If all the planets lined up, the whole thing should take about 3.5 hours, getting me out of there just before rush hour proper. For the first time in all my many visits… there were kiddies in there. Not one, but two. Not as patients, but stuck with accompanying visitors.

Honestly, one of my perpetual rants is against people who seem to think that hiring a sitter is some kind of child abuse. Either they’re too cheap, or too lazy, or incapable of separating from their child for a few hours. Whatever; the people who drag their kids everywhere just set my teeth on edge and make me sit on my hands to resist dope-slapping them. And of all the annoying, inappropriate places these copter moms drag their poor kids to, this has GOT to be the most ridiculous. Why would you drag your otherwise healthy kid to a germ- and vermin-ridden hospital, and force them to sit for several hours, to the annoyance of scores of SICK people?

The four year old little girl, bless her heart, was good as gold. Her hair was in the Little Black Girl ‘do, with a dozen little braids springing from her head. But some genius put bands with square plastic bobbles at the base of each braid. I couldn’t imagine trying to lay back and sleep with a head full of those things. I was also freaked out that her great-gran (who was probably about my age!) had three-inch fingernails. I know I’ll have nightmares about those. Anyways, between the television and a hand-held video game, she stayed quiet and amused through her mom’s afternoon-long ordeal.

The one that really got me was the little boy, maybe a year old. I didn’t see who his mom was accompanying – a husband, sister, friend? Doesn’t matter. I can’t come up with any reasonable excuse for shlepping that baby to the hospital. He was a new walker, and just wanted OUT of that goddamned stroller. And every time I dropped to sleep, he let out a shriek.

Of course, my fun wasn’t over. I should have beaten rush hour by several seconds, but I got in a traffic mega-snarl. (Thank goddess I’d made a pit stop before leaving the hospital.) More than fifteen minutes to go a single block; no way out! The reason, I finally discovered was that some rookie genius pulled a car over on a major thoroughfare. He did not have the sense to direct this car around the corner for ticket-writing, and instead backed up traffic for miles and miles. When I finally finally finally got out of there, it really was rush hour. Not the end of the world, but a 35-minute stressfest instead of a 20-minute cruise.

When I finally got home, I laid down on the sofa and didn’t move for three hours. I think it may be time for me to stop driving.

Big C Update

I’ve put this off for more than a month, folks. It’s like a tape I could just play for you over and over. But this time, there’s a new twist.

The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it’s the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I’ve already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I’m pretty sure this “cure” would kill me.

Being a good girl, doing as I was told for the last two years — especially when it was contrary to all my instincts — has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn’t seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn’t see the need, I did get a second opinion this fall. I’ve been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I’ve decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I’ll be switching to what they call “palliative care,” which is just treating the symptoms as they arise.

I’m hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I’ve still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don’t improve a whole lot from where I am today, just knowing that I don’t have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I’m finally giving in to that inner voice, and it’s telling me to choose quality over quantity.

As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.

If you happen to disagree with my decision, I don’t really care, so please have the manners and good grace to keep it to yourself.
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P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the “best possible outcome” has changed a little. MM patients and their loved ones don’t need the details of my particular situation, so this is my last MM post.