This is Jo here (Laird's daughter) Laird is focusing on recovery right now and is, as I'm sure you have noticed, not writing blogs. Susan and Laird are trying to maintain updates on his caring bridge site. The address is caringbridge.org. You will have to sign in to see his posts. Then just search Laird Schaub. Thank you to everyone who asked for this link, we apologize for the delay, we had to figure out how to get into this account.
Monday, February 29, 2016
Thursday, February 11, 2016
I. I'm slowly working my way up the table of periodic updates: from horizontal to right angle—though there are apparently some among my readership for whom that subject can never be insuffiienctly compelling nor can the content ever "too right" to be labeled as inappropriate as blog material. Just bring it on, and let the blue pencils fly. Sheesh. I'm no convinced this is a good way to run a railroad.
I face a stiff challenge first thing evey day when the PT folks push me to give them "true weight" right out of the box. This request invariably puts me my off my feed (do they believe I've heretofore been conspiring to obsfuscate?) It just wrong foots the whole day.
II. While I'm at it, I've also noticed some subtle changes to the frequency and duration of my walker perambulations. Though I have no idea why that constitutes compelling information, I nonetheless have it. Surely Therapists want consistent information about weights and it makes sense that they're more likely to get if it's requested at the same time daily.
That said, I chafe because they are willing to let the high standards (just barely possible in the controlled hospital environment) be the enemy of the good that's routinely possible but mostly wasted. Sigh.
III. Finally, there are some oddments about difference ways that readers prefer receiving information updates, which includes a marked perference away from cognition and toward gestalt. Is that worth noting? Apparently it is, as here I am already doing it, as well as preferences about how how that info is conveyed.
While everyone wants blood be be drawn only as needed, and wants samples to be fresh, the patient wants the total number of draws to be minimal where the doctor what wants to emphasize freshness and blood that's least likely to coagulate.
Nursing staff wants to emphasize frequencing of testing for vitals (blood pressure, heart rate and blood temperature) to avoid surprises. Patients want to reduce routine testing in the service the same goals. It gets confusing. And when the music stops, everyone is supposed to get their butt in a chair or go home. Can you see why this is nerve-wracking?
Friday, February 5, 2016
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.
Monday, February 1, 2016
For the last four decades I've devoted myself to the creation, exploration, and promotion of community living. Over that time, whenever I talked about the "C" word, I've been invariably referring to community. As of yesterday, however, the "C" word immediately in front of me is cancer.
As readers of this blog will know, I've been battling chronic back pain for 16 months, and acute lower back pain since mid-December. As I have been through previous episodes of this since its first occurrence in October 2014, I've been treating it similarly and expecting it to settle down with the help of prescription medicine and bed rest.
But after 6+ weeks of yo-yoing back and forth between almost functional and can-hardly-get-out-of-bed-to-pee, I finally faced the fact that I needed help beyond what my own body could provide, and went to the ER at St Luke's Hospital in downtown Duluth yesterday afternoon. It turned out to be a good thing that I did.
As soon as we got past the admittance dance (how do you spell that last name again?) and I could lie down in a bed (the pain all but disappears when I'm prone but is excruciating when sitting or standing), things started picking up steam. The ER doc, Scott Wolf, quickly had me relate my history and ordered blood work. My blood pressure was 98/56, which is abnormally low for me, and testing revealed that I was down about a quart. Not good. Further, there was gobs of calcium in the blood and everyone agreed it was time to admit me to the hospital.
Before I had a room assigned I was whisked off to x-ray and the doc who read the film (Nick) noticed that my bones were thinning and showed the characteristic pattern of calcium leaching—hence the elevated levels floating around in my blood. The preliminary diagnosis is multiple myeloma, a form of cancer in which the body produces abnormal plasma cells. Not only does these cells reduce the number of useful red cells, white cells, and platelets (that help with clotting), they also weaken the bones.
The diagnosis was preliminary and there is much testing to follow—even if the cancer diagnosis is confirmed, it comes in different presentations and the doctors need to know how far long it is before prescribing treatment.
Pin cushion Monday
Today, my first full day in the hospital, they've been drawing more blood, giving me all manner of supplements, queuing up some more x-rays, a CT scan, and who knows what all as the they circle around a diagnosis. With all the adhesive, gauze, and tubes, it looks like I'm trying out for the walking wounded drum and fife corps.
They're also flooding my body with intravenous liquids (two units of blood and all the saline solution they can pump into me) as the standard treatment for pepping up my kidneys.
In exchange I get cable TV and anything I want to eat between the hours of 7 am and 7 pm.
I'm starting to get the picture that I'm facing a serous health threat. While I don't yet know the full dimensions of it, I've been gradually digging myself a hole for quite a while now and it's time to start working my way out of it.
I'm experiencing a perplexing range of emotions:
o Foremost, it's likely that I have cancer. While the docs have been upbeat, cancer kills and at this point I don't know how close to the edge I am. That's scary.
o Paradoxically, it's also a relief to finally be getting solid diagnostics abut what's causing my recurring pain, and what I can do to fix it.
o Over the past month I've been going through a roller coaster of feelings as I attempt to puzzle out why I'm in such pain and the right way to think abut getting through it. It's been bewildering and exhausting. Do I push through the pain or listen to my body?
Right now I feel overwhelmed, and at the same time well taken care of. In a day or two the fog will lift and I should be able to get my first glimpses of the road ahead.