[cancer] Field notes from Cancerland, peeling fingers edition
I’m off the Regorafenib this week as part of the monthly dosage cycle. This seems to mean that my feet hurt a little bit less, and there’s also less pain in my hands. Even so, my lovely case of hand-foot syndrome progresses. There’s some cracking in the skin around my heels. My fingers are peeling like crazy. (Though oddly, so far my thumbs are not.) I am not seeing rawness yet on the fingers, and the peeling barely even itches. It’s just kind of weird.
Regorafenib continues to play merry hob with my sleep cycle. I tire and fall asleep too early, and sometimes also pass out in the afternoon. Yet I’m awake between 2 and 3 am every day. Sometimes I can get back to sleep, mostly I can’t. I’m netting five hours and perhaps a bit more of sleep most nights, occasionally six or so. Weirdly, even Lorazepam does not seem to help this very much. As it happens, I’m surviving okay on this level of sleep, but it leaves me without mental or physical reserves, at a time when the treatments and the stress of terminal cancer eat at my heart, mind and body.
I have been very, very busy this week. Day Jobbery is wrapping up with various project handoffs, knowledge transfer efforts and so forth preparatory to me going on disability as of 7/2/2013. In order to do this, I have four separate disability claims that need to be filed and followed up on: FMLA, Short Term Disability, Long Term Disability, and SSDI. This in addition to a considerable amount of detail effort to manage my severance from the workplace. Not to mention all the followups and action items from multiple recent meetings with attorneys (plural), the financial planner and the accountant. And everything else that goes on around here normally, including writing business, dealing with health insurance, medical appointments and so forth. So, yeah, busy.
Speaking of writing, I am at least moderately back on the horse. I worked last night on finalizing METAtropolis: Green Space, specifically my own story and that of the mighty kenscholes. I have to bat clean-up on a number of minor items today. With any luck, tomorrow I can return to my work effort on drafting Original Destiny, Manifest Sin. I am slowing down (see below), and I’ve for the most part stop accepting invitations to contribute to markets. Just getting through what I have in front of me is close to impossible. The new, it is receding. Even so, I am still writing.
I continue to notice mild cognitive impairments. A combination of memory lapses and being hard-of-thinking. Not sure if this is a Regorafenib effect, a stress symptom, or just my general state of being after all the chemotherapy of the past few years. Most likely all of the above. One place where this manifests starkly is that my ability to either explicitly multitask or to juggle multiple tracks of effort in a tightly-coupled process has all but evaporated. I’ve turned into a one-thing-at-a-time guy. Something that hasn’t been true of me ever, right back to the very beginning of my life. I feel the loss of some of my capability.
Today, Lisa Costello, Dad and I are going to see a palliative care specialist to talk about end-of-life planning some more. I expect this appointment to cover everything from pain management in my terminal decline, to hospice care decision making, to advice on administrative and financial issues. Like so many of my meetings of late, it will be sobering and overwhelming. This is a difficult path I walk now. Appointments of this nature are trail-blazers that lead me to where the shadows deepen and the light leaches away until I am left with nothing but blood, bone and fear.
Posted: 4:46 am Wed June 19 2013 | Comments(13) |
[cancer] Things I have been told this week
In the process of pursuing various disability claim issues and whatnot this week, I have been told some fairly amazing things by otherwise helpful and friendly customer service people at various providers of health and disability services. For example:
“Oh, don’t worry about those emails notifying you of claim documents. Sometimes our Web site just sends them out even if nothing’s there.”
“You’ll be receiving some more forms in the mail shortly. Ignore them.”
“Yes, the phone system will ask you for that information every time you call. It doesn’t apply to you.”
Mind you, in each case I had to ask very specific questions in order to elicit this information.
Here we have a benefits management process of Byzantine complexity, involving dozens of forms running to hundreds of pages, along with multiple overlapping deadlines and complex application procedures. A single missed deadline or omitted form can derail everything and disqualify me from various programs. Yet the intake processing and IT infrastructure of these services is so eccentric that it falls to me to understand which bits of information or sets of documents are critical and which are superfluous.
It’s not like I’m mortally ill or profoundly stressed or anything. Of course I have the time, focus and mental energy to sort through what the providers themselves can’t get right. Thank you for asking.
Posted: 4:25 am Wed June 19 2013 | Comments(17) |
[cancer|writing] Why I don’t use dictation software (yet)
In various discussions of my issues with hand-foot syndrome, people have asked if I would consider using Dragon or some other dictation software. The short answer is, “Not yet.”
I am in no wise philosophically opposed to using such a solution. In my Day Jobbe life, I have more than a passing familiarity with Automated Speech Recognition (ASR) technology. It’s wonderful stuff and can be quite powerful. I like the concept plenty. ASR can be liberating on a number of fronts, from the narrowly technical to the profoundly creative. There’s only one small problem.
I don’t talk like I write.
For a long time I’ve been of the opinion that if you stuck a professional writer’s head into an fMRI machine (presumably whilst still bolted to the rest of the professional writer in question), you’d find that the speech center which lights up when composing fiction is distinct from the speech center used for ordinary, everyday communication. It’s English as both a first language and a second language. In my case, my written fiction syntax and style are noticeably different from my spoken syntax and style. Sentence length and complexity, word choice, rhythms — I’m two different people.
The writer who’s been in careful training since 1990 is a different speaker than the blabbermouth who might use Dragon. The stories each of me can and would tell are quite different.
So while I’ll turn to Dragon if I can, once my hands give out if they do, I don’t want to go there too soon. I’ll lose something essential. I might gain something just as wonderful — I am open to the possibility — but right now I value what I have while I still have it.
Posted: 4:44 am Tue June 18 2013 | Comments(24) |
[cancer] Field notes from Cancerland, post Father’s Day edition
All the excitement of JayCon XIII is behind me, along with JayFest and the various auxiliary festivities. This means that I am back to focusing on the difficult details of my life. Including still not having my laptop, and thus missing access to many of my files. I believe the new one arrives tomorrow. It also means the mental and emotional landscape has shifted from a multitude of entertaining distractions to being back at the center of Cancerland. Melancholy prevails.
This week I see a trust attorney for some more estate management discussions, and a palliative care doctor to talk about end-of-life planning in detail. I’m also sitting for a print interview, as well as film shoot not connected to Waterloo Productions‘ ongoing Lakeside project. More about these as they unfold.
Life Transitions of the Financial Sort
The house refinance finalized and funded last week. I hadn’t really written about that here while it was ongoing, simply so as not to create problems in the process should the lender Google me for diligence. I’ll say more about this later in a detailed post on end-of-life finances, but the general idea was to reduce the interest rate in order to minimize cash flow going forward.
Likewise, I have begun the process of separation at work, and my last day on regular payroll is currently set to be 7/1. I’ll go on Short Term Disability for a while, then transition to Long Term Disability later in the year. I have a lot to say about this process, but would prefer to see it all play out before I comment publicly. What is clear is that I will go through a period this summer of essentially zero income, which will be scary and tight.
Lisa Costello had a near meltdown a few days ago in which she told me how difficult it was to watch me dismantle my life piece by piece. Which is exactly I am doing. Leaving work, simplifying and shutting down financial accounts, giving away or getting rid of much of the contents of my house, saying good-bye to geographically distant friends as I get the chance to see them, and so forth. I pointed out that dismantling my life on my own terms was itself something of a gift, as it grants the illusion of control and allowed me to arrange things as I see best. Those brave words aside, she’s absolutely right. This process is heart-breaking. My only comfort is that it’s even more heart-breaking when your survivors have to do it all unexpectedly.
Regorafenib Side Effects
Side effects bingo continues. As of today I am in my off week for the drug (21 days on, 7 days off), so the side effects have hopefully peaked for now. Some of the advice we’ve given is that month one is the period of maximal side effects, some advice says month two. In either case, we expect a plateau after the peak, with the possibility of some mild amelioration. In the mean time, yech. My mouth continues swollen and sore. After most meals I brush my teeth with pharmaceutical grade toothpaste, then rinse and gargle with a saltwater solution followed by a baking soda solution. (I tried combining those two at first. Pro tip: Don’t. Just don’t. Trust me on this one thing.) After that I rinse with the lidocaine mouthwash. Let me tell you, go through that a few times and you never want to eat again.
The other overwhelming side effect is the hand-foot syndrome. As of yesterday I was finally seeing some skin breakage, just peeling on my fingers mostly. But the pain in my palms and soles has been quite troublesome. I walk with a cane now, use a disabled parking permit, and spend as little time as possible on my feet. I also wear cotton gloves most of the time, to avoid incidental friction on my hands. Yesterday my feet hurt so badly I thought the skin of my heels had torn free (which is a possible thing on this medication). In related news, the swelling in my scrotum continues, though we’ve managed to mitigate it by having me wear briefs which are slightly too small for me. This gathers and cradles the affected area, which keeps the skin of my thighs from irritating the swelling. Crazy stuff.
I’m also continuing to experience erratic GI function. Admittedly, that’s my ground state these days, but the Regorafenib creates mild constipation on top of everything else. This is pretty much the opposite of what it says on the tin. And my sleep patterns are just weird at the moment. Unless I have a strong amount of social distraction, I will all but pass out by 9 pm. I will then wake up between 2 and 3 am, and usually cannot go back to sleep. Even my friend Lorazepam doesn’t seem to fix this problem. Just lately, I’ve been falling asleep in the afternoons, and fairly deeply at that. What I’m not yet doing is hitting that pathological fatigue that has characterized so much of the rest of my chemotherapy experience over the years.
I see my oncologist next Monday, along with more bloodwork to track my liver functions and overall body chemistry. We’ll have to find out what the second month of Regorafenib brings. I suspect this will depend a lot on how much the side effects diminish this week in the absence of continued further drug dosage.
Posted: 5:30 am Mon June 17 2013 | Comments(18) |
[cancer] Field notes from Cancerland, JayFest edition
JayFest is tonight at Powell’s Cedar Hills. Some of the folks arriving today are staying over for JayCon, including J.A. Pitts and fjm. From about lunchtime today until after dinner Sunday it’s going to be one nonstop trip to crazytown around here. Next week will be a dead calm sea by comparison.
In the department of good news what cheers me, seanan_mcguire and I have placed our collaborative novella “Hook Agonistes” with Subterranean Online. Go, us!
As of yesterday, the house refinance has funded. I’m done with that, at an advantageous interest rate and a reduced cash flow requirement. This week, we have met with the accountant, the financial planner and the attorney about various matters as well. Sometime in the next week or so, I will write out in detail the kinds of planning we’re doing, including whys and wherefores. Just don’t have time right now. And, frankly, it’s overwhelming.
I am in the process of leaving work permanently on disability. I have a lot to say about this, but I believe I shall wait until we’re all the way through the process so I can comment from that perspective. My employer continues to be extraordinarily supportive of me in this process, as does my boss, as well as the members of my work group. This does have some fairly staggering implications in terms of me receiving reduced cash flow from disability insurance while seeing my healthcare costs push up by 350% in shifting to COBRA. Again, more on this later when all the ducks have been enrowed.
Regorafenib Side Effects
My not-so-slow side into debilitation continues apace. I am now wearing cotton gloves almost all the time, including in my sleep. Also thick hiking socks over my silky bamboo socks, to cushion my feet. We have bought a new chair that gives me good elevation of the extremities, as well as a ‘zero gee’ posture to deal with the significant back pain which is emerging as a result of me walking with an odd gait due to the foot pain. I am also experiencing swelling in various body parts, including my feet and my scrotum. (That last is no joy, let me assure you.) The day to day stuff is driving me nuts. Yesterday I almost had a meltdown because I could not uncap a pen. Also, I am getting stupider. I can tell this because my performance at Sudoku has declined noticeably in the past two weeks. I use that as one of my basic cognitive self-checks. I’ve also been making an increasing number of stupid logistical mistakes. And my sleep cycle is very messed up. I woke at 2:15 am this morning, finally giving up at 3:00 am — this on top of a 10:00 pm bedtime. So, yeah…
Meanwhile, there’s JayCon XIII on Saturday. I’ll be doing my best to enjoy the heck out of all the fuss and bother. Hope you can make one or more of the events between now and then.
Posted: 5:00 am Thu June 13 2013 | Comments(18) |
[cancer|personal] Getting stuff done
Yesterday, with help from Dad and lillypond (a/k/a my sister), I:
- Secured my disabled parking permit from the DMV
- Returned the MacBook Air I just bought
- Ordered the new MacBook Air based on this week’s announced hardware refresh
- Determined the need for a PC to handle finances and medical accounts separately from my writing computer
- Selected (but did not yet purchase) that PC
- Upgraded the_child‘s cellphone
- Met with a Financial Planner for almost two hours, which was both overwhelming and informative
- Picked out and ordered a second sick-me chair at Relax the Back, which has different purposes than the first one
- Retrieved the Genre car from the mechanic
- Worked out how to maintain my blogging habits from Lisa Costello‘s PC while I am Air-less
- With Lisa’s assistance mailed off story contracts and various bits of pharmacy business
- Plus a bunch of other stuff I cannot remember this morning
One day at a time, one thing at a time. Except sometimes the days and things come all together at once.
Posted: 5:40 am Wed June 12 2013 | Comments(16) |
[cancer] Yesterday’s oncology consultation
Yesterday Lisa Costello, Dad and I met with one of the oncologists from my clinic. The topic of discussion was my response to the Regorafenib. I have been experiencing a number of side effects, including incipient mouth sores, a sore and swollen tongue, loss of appetite, emerging food aversions, lower GI disruption, disrupted sleep patterns, and hand-foot syndrome. We did some bloodwork beforehand which indicated largely normal blood chemistry, though my liver functions are trending poorly. Among other things, my bilirubin levels have doubled in the past month. The oncologist was unsure whether this was a function of my progressing tumors or a function of the Regorafenib, or both.
We discussed the extent of my side effects, and that I can expect them to get worse in the coming week. We have permission to go off the Regorafenib if any of this becomes unbearable. They thought I would see a plateau of side effects by the end of the second month.
Additionally, due to the mobility impairment from the hand-foot syndrome, I received the paperwork for a disabled parking permit. I need to pursue that with the DMV now, which should be simple enough.
I will be undergoing another round of bloodwork in two weeks, and seeing the oncologist at that time. Followup scan won’t be until the second half of July.
Posted: 4:52 am Tue June 11 2013 | Comments(9) |
[cancer] Field notes from Cancerland, birthday weekend edition
The Oregonian is running another interview with me today, entirely about my cancer experience. This piece by reported Jeff Baker is a followup to a profile they ran last year. It’s interesting to me to read about myself from a distinctly journalistic perspective. The coverage is friendly and sympathetic.
Sandra Tayler and the JayWake Book
The mighty @sandratayler is working on the Jay Wake Book. She’s looking for pictures, stories and other material about me. As Sandra says:
ur friend Jay has been diagnosed with terminal cancer and is hosting his own wake, Jay Wake, which Howard and I are attending. We know that other friends of Jay would love to be able to come, but can’t for a multitude of reasons. The Jay Wake Book is a project to let everyone participate in the celebration of Jay. I’ll be collecting stories, art, and photos of Jay to compile into the book. The first iteration of this book will be presented to Jay at Jay Wake. The second iteration will include stories and photos collected at Jay Wake. It will be made generally available either in electronic or print version.
Please contribute if you can.
‘Tis the season and whatnot. JayFest is this coming Thursday at Powell’s Books Cedar Hills location. That’s a group signing and book fair featuring a dozen Northwest science fiction and fantasy authors. The book fair will run from 6 to 9 pm, with the group signing at 7 to 8 pm. I will be there, with various friends and family in tow.
Then this coming Saturday is JayCon XIII [ jlake.com | LiveJournal ], my big, public birthday party. This will be at the Flying Pie on SE Stark Street in Portland. There is a good chance this is the last JayCon ever with me in attendance, and certainly the last one where I’ll be fully on my game socially and emotionally, so if you’ve ever been tempted, now’s your big chance.
And of course, JayWake is coming up July 27th, because if I can’t enjoy my own damned funeral, who can? There are guests coming in from all over. I’d love for you to be one of them.
In the department of less fun things, my hand-foot syndrome is rapidly becoming even more annoying. This is of course a side effect of the Regorafenib I am currently taking in an attempt to slow my tumor growth. My feet ache and sting progressively more as the day goes by. Eventually I reach the point where I can walk only with substantial pain. At first they would ease up overnight as I slept, but these past two mornings, I’ve woken up still in pain. My hands are having equivalent problems. This makes many simple tasks and household chores rather difficult. Not to mention the whole business is distracting. We see one of the oncologists tomorrow to talk about the side effects and their management. I’ll also be having bloodwork done, as this medicine is a liver antagonist, and the liver is of course the part of my body which is under the heaviest assault from my cancer.
The To-Do List
Remember my enormous to-do list [ jlake.com | LiveJournal ]? I continue to work my way through it. I’ll post a more detailed update in the next week or so, but suffice to say that this week forthcoming I have in addition to my oncology appointment also meetings with an attorney, an accountant and a financial planner. Plenty going on. I need to do it now, because the illness will likely slow me down soon enough.
Posted: 4:45 am Sun June 09 2013 | Comments(20) |
[cancer] Already struggling with the Regorafenib
It’s amazing how medications can shape our lives. This is a lesson I’ve learned over and over again these past five years, and now I’m learning it again. A week ago today I started taking Regorafenib, and I am already struggling with it.
This is oral medication. That makes Regorafenib the first chemo series I haven’t taken intravenously. I ingest four pills every morning for three weeks, then I’m off for a week to recover from the side effects. Sort of like how a lot of hormonal birth control is administered.
Wikipedia lists the side effects as follows:
[W]eakness or fatigue, loss of appetite, hand-foot syndrome (also called palmar-plantar erythrodysesthesia), diarrhea, mouth sores (mucositis), weight loss, infection, high blood pressure, and changes in voice volume or quality (dysphonia).
Let’s see… In only a week, I have experienced:
- Weakness or fatigue
- Loss of appetite
- Hand-foot syndrome (also called palmar-plantar erythrodysesthesia)
- Diarrhea [not exactly, but definitely new GI disruptions]
Mouth sores (mucositis)
- Weight loss
High blood pressure
- Changes in voice volume or quality (dysphonia)
Six out of nine ain’t bad for the first seven days. Given prior experience, I expect all of these to get worse, likely significantly so.
And hand-foot syndrome unpacks into a number of unpleasant elements. For example, extreme heat sensitivity in my hands and feet, which makes it hard to shower. Already I cannot open the caps on bottles. Last night having appetizers before dinner, Lisa Costello had to shell peanuts for me. Simply gripping my pants to pull them on is painful. We are seriously thinking I cannot wash my hair anymore without help. It hurts to pinch my thumb and forefinger together, for pity’s sake.
This is serious business. Try functioning without your hands and feet. I feel like I’m turning into a giant toddler.
As I was putzing around this morning eating my required low-fat breakfast and taking my daily dose of Regorafenib, I found myself wondering if this drug would grow so challenging that I would prefer to stop taking it. Given my current medical situation, that is to say would I literally rather die than put up with what this drug is doing to me? I’ve never asked myself that question about chemotherapy before.
When you get to the point I’m at with a disease and its mortality, many of your ideas and assumptions change. I am looking at the possibility of Regorafenib changing them again. This makes me unhappy, no matter which direction I try to face.
Posted: 3:28 am Mon June 03 2013 | Comments(17) |
[cancer] Field Notes from Cancerland, midwestern BBQ edition
Regorafenib Side Effects
I’ve been taking the new medication for a week as of this morning. Side effects started showing up around this past Thursday, about four days in. The most noticeable is the early stages of hand and foot syndrome. Right now this expresses itself as a sharp heat intolerance in my hands and a mild heat intolerance in my feet. This makes it hard to take a shower. I am also experiencing soreness and pain at any pressure. This makes it hard to carry anything weighing more than a pound or two, as well as open jars and bottles, as my grip has already degraded almost completely. Not to mention walking is becoming painful.
I am at risk of becoming chair and bed bound from this, and of losing most of the use of my hands. I can cope with a fair amount of that, but not the loss of my ability to type, or read electronic and paper material.
I’m also becoming hoarse and losing my appetite, which are probably Regorafenib related as well. I expect pathological fatigue soon, though that hasn’t appeared yet, and possibly a number of other issues.
This is only the beginning. I have seven more weeks of this regime before we evaluate progress with another CT scan. We’ll see how sharply I decline over the coming weeks.
Return of the GI Follies
I am having GI issues which are almost the opposite of Regorafenib’s stated side effects in that area. Things are binding up and slowing down in my lower GI. This is unusual for me, given the architecture my multiple surgical interventions have left me with. Erratic, fast and loose is far more my everyday experience. I’m not sure if this isn’t just some transient dietary thing or what. We shall see.
garyomaha asked me yesterday over dinner if I was still working on Original Destiny, Manifest Sin. My answer was yes, but not right this moment. I’ve had multiple event interruptions in my writing (Gaslight Gathering, Nebula Awards Weekend, Rio Hondo) while being focused on the METAtropolis: Green Space project, that has a final due date in two weeks. Plus the “Hook Agonistes” collaboration with Seanan McGuire. I’ve actually been getting a fair amount of work done, but much of it has fallen under my generic category of WRPA (writing related program activities) rather than the advancement of wordcount on specific manuscripts.
Given the advance of both cancer and Regorafenib, I am very mindful of having a short fuse on all of this. I expect to be back on Original Destiny by this coming weekend, if not a bit sooner, and will be focused on that until I’m either done or am confronting an interruption too critical to power through.
Business Issues and Interviews
I’ve been pursuing several parallel tracks of business issues related to disability and estate planning. When those reach a point of fruition, I will discuss them here on the blog. Some things need to happen at their own pace, in confidence, before they can be outlined in any detail. That coping with cancer should involve Sekrit Projekts is both annoying and inevitable. On the plus side of Sekrit Projekts, The Oregonian will be running another in-depth interview with on Sunday, June 9th. I’ll link to the online version of that interview when it becomes available.
Star Trek Into Darkness
This isn’t at all cancer related, but it’s interesting and entertaining. My recent comments on Star Trek Into Darkness [ imdb ] have provoked quite a set of responses.
Some are here and here on my blog, but the majority are on Facebook here and here. See also this thread on the Facebook page of Nikki Nmd which riffs on some of my remarks.
Fascinating, the range of reactions, not to mention the depth of passion behind those reactions.
Posted: 4:19 am Sun June 02 2013 | Comments(8) |
« Older Posts |