Friday, February 5, 2016

Cancer Update: the Treatment Begins

Yesterday, my oncologist (Dr Alkaeid) decided on a definitive diagnosis: I have multiple myeloma, as original suspected. 

There was a delay in reaching that decision because I have it in an unusual form which makes tracking it somewhat more challenging, and it is somewhat more aggressive than its more common forms, but this bad news is counterbalanced by the cancer being pretty well understood and that it is in a family of cancers in which tremendous strides have made in treating it in recent years (when Susan told our oncologist that her father had died of multiple myeloma in the 1980s, the doctor said the 1980s was like the Stone Age in comparing treatment then with treatment now).

That said, there are complications. The number one priority is saving my kidneys (to avoid dialysis or a kidney transplant). As I reported Monday, their functionality was down to only 20% when I arrived in the hospital Sunday. They were being strained on three fronts: a) processing all the excess calcium in my blood as a byproduct of the bone leaching characteristic of myeloma; b) processing all the useless plasma cells that were being produced by the myeloma; and c) chafing at all the ibuprofen/naproxen I'd been taking to ease my back pain. My kidneys were just plain wore out and close to renal failure.

In treating the cancer, the first step is to kill off as many of the cancer cells as possible through chemo-therapy, but the docs have to be careful the this doesn't lead to a toxic dump that swamps the kidneys. 

After several days of trying to flush the kidneys of the excess calcium and abnormal plasma cell detritus (to enhance their functionality) last night I started a course of steroids and chemical warfare targeted to knock out the cancer cells at a rate that my kidneys could keep up with.

This will be done in courses of chemotherapy, each one taking two weeks. After a course is completed it is evaluated before another is started to see how to adjust the medication for the next course, or whether to stop that protocol. 

Assuming I get through that OK, the next target is to strengthen my bones through re-calcification. Again, care must be taken that the kidneys are robust enough tolerate the treatment. Meanwhile, my bones are thin and at least somewhat more susceptible to breaking than in a healthy person. I have to not just be careful about lifting; I have to be careful about sudden torquing or unusual weight loading of arms and legs.

On the brighter side there is reason to hope (though no assurances) that I can recover a significant amount of renal function if we take away the stressors. That is, the kidneys have some capacity to regenerate and it behooves me to make the most of that possibility, through careful lifestyle choices. This can include diet, travel, and workload but I don't yet know the dimensions of what will be asked.

As if this weren't enough, I still have the presenting back pain that got me to the hospital in the first place. While it's probable that it's related to the myeloma (for example, the calcium loss has led to partial collapse of three vertebrae—T 11, T 12, and L1—if you're keeping score at home), we're not sure of the mechanism yet or even the best way to treat it. 

That said, the doctors are agreed that it's a bad thing for me to stay supine and I need to be moving more and upright as much as possible. Toward that end, I'm taking oxycodone for pain relief and working with a physical therapist to get me out of bed every day and walking—I'm not doing anything quickly, but at least I'm starting to do some of it vertically.

Today, for the first time in a month, I did a 100-foot sojourn (around the nurses desk before heading back to bed with the aid of a walker), and sat up to take my dinner for the time since December. Small but important steps to life-after-hospital.

The news that landed best all day was a story this morning from one of the staff oncologists (Dr Perlov) who said that he treated a man just last December who presented with another version of multiple myeloma with the same degree of complications as mine and he's well on his way to full remission and excellent prospects for about 15 years of healthy life ahead. 

It sounded damn good to me.


Leslie Greenwood said...

Hi Laird, it's Leslie at Ganas. I love you. I'm in awe of your courage as you step boldly into this journey. I much prefer you healthy and continuing your previous lifestyle free of pain. You accept this reality with more grace than I ever could. May you heal!

LNinMontreal said...

Dear Laird,
I have been following your blog for several years but had missed your first announcement about the cancer. I am very sorry to hear you are unwell and wish you the very best. I do hope you get through this and continue to bring your experience and wisdom to the world.

Faces Photo said...

Dear Laird,

Wow, now that's a fine how do you do---for you and for all of us that find the world richer for having you in it! That said, delighted to hear about the sunshine rays that are beginning to filter into the darkness which any pronouncement of cancer creates.

Please know that a community of love and healing spirit will soon be traveling east from California to find you wherever you maybe.

Holding you in the light, wonderful man!



Ma'ikwe Ludwig said...

Very glad to hear this more hopeful news!

I'm remembering today many the past years of amazing birthday meals you made for me... with fondness and some longing. (Alline is out of town and the cheesecake form J's frankly sucks.)

Hang in there, my friend. So many people here in the tri-communities are sending you love and healing energy/intentions, including me.

Many (gentle, non-bone-crunching) hugs...

Renee Sweezey said...

Laird, I'm sorry and saddened to hear of your diagnosis.
Holding you in my thoughts and agnostic prayers!
Renee from Monan's Rill

Kip Lilly said...

Geez, Laird, what a way to get your back diagnosed. It's also hardly surprising that one thing led to another (see Rosana Dana's comments from early Saturday Nite Live). By now you have the whole hospital thing down, but it is still a good time to plan your escape.

As a result, I append Kip's Hospital rules: Or Calling Dr. Cider House

1. Go in loaded.

In the few minutes before your diet must be restricted prior to surgery, ALWAYS take a double dose of metamucil, on top of normal doses which have had increased amounts of metamucil built up over the previous weeks.

2. Remember the Aliens

Be really nice to all the Third World medical support people who make all the important calls like pain med distributions, food delivery and clean up and attend to your now child like toilet needs. Memorization of their first names and countries of origin is a must. And it is only good manners to do so. Frequently it will lead to great stories about places you may decide to visit upon your release from the medical combine.

3. Pin down exit protocol

Make them tell you what is needed for a hospital jailbreak. For example, 1. Dangle feet 2. Stand up 3. Break wind 4. Walk, breaking wind 5. Pooping (note this need not occur, only urination is measured with visual input-output vessels, so lying is acceptable)

4. Send out the Tubes

As soon as possible, get them to rip out the tubes. They can use a cuff and thermometer just like in the movies. The tubes may make pain meds self service, but it inhibits everything else, like sleeping, eating, and going to the bathroom.

5. Dress for Success Early

Once the majority of the exit protocol are charted by your loudly thanking the "team" for their enabling behavior, thus anchoring your rights of passage, get up by 5 am, change into civilian clothes.

6. Where do I sign out?

Dressed, walk to the nurses station and offer to go to the business office to sign out. This is before normal day shift changes, so it galvanizes the computer queue before the day shift staggers in for first coffee.

7. Last shot at "free drugs"

As the teams of the exit guides scurry in to get papers signed and canceling PT with people too lazy to show up when you needed help to get over a toilet, take that last dose of pain meds to get you through their somnambulant choreography and brace you for the last wheel chair ride, the one you don't need. It also helps your relations with your driver, who generally tries to help by getting in the way.

8. Thank them

As they roll you over every bump on your way out, thank the astonished medical team. Waving like a beauty queen candidate also helps.

Throwing beads or hard candies is generally not good form. But a thank you salute may soften your stool for the next visit.

PS. This is privileged information, covered under the HIPAA Privacy Rule, which is so, so secret it can not have a real name, only a password-like 4 to 6 uppercase random letter or number or both assignment. Go ahead, try to look up it's real name.

Click here to view the combined regulation text of all HIPAA Administrative Simplification Regulations found at 45 CFR 160, 162, and 164.

Oh, and you will have to use sign language each year that you read this to show that you are not being naughty.

Responses are filed with the Freedom of Information Act, just to know we're watching you as well as somebody else.

Kip, same class as you, SMA and others who want you back in the canoe - without the heroic lifts, totes and gunnel pumping.

MoonRaven said...

Glad to hear that you've had some positive news and I hope that things get better from here.


Gigi said...

It is shocking to hear of grave illness among the hearty of spirit and body. As always, you are sharing your journey with great articulation and contemplation. You are in so!! many people's thoughts right now. I would like to add my well wishes for a steady recovery as you navigate these rough waters. Gigi