Monday, August 31, 2009

Post rated R for adult language -- skip this one if you are offended easily

I'm apologizing in advance for this rant because I know I have some genteel readers, including my in-laws. But I want to record my feelings as authentically as possible, and this post requires some naughty words. If you are offended by bad language, please skip this post and accept my apologies.


Today was a shitty day. There's no other word for it.

I woke up to the news that my employer concluded a multibillion dollar deal to which I had devoted many long days and nights of work before I got sick. It's a good thing for the company, but I missed out on closing the deal, which means I'll get none of the credit for it, and which means I'll get no bonus for its completion (this might have been, say, 20% of my compensation for the year).

And it just gets worse from there.

The shingles hurt. A lot. There's some discussion that it may be post-herpetic neuralgia, which is fancy-talk for IT'S GOING TO HURT FOREVER. Meaning after the shingles have gone, the nerves have been damaged enough that they will hurt FOREVER. We don't know this for certain yet.

Then I found out that as a result of my disease and the wear and tear on my back, I've lost about an inch-and-a-half of height. This might not seem like a huge deal to those of you who are tall, but I was a little over 5'8 when I started this journey and now I'm under 5'7, which is really a bummer. It also has contributed to my belly being larger -- the height is all out of my trunk so whatever organs, fat, and other tissue was there to begin with is now crowded into a smaller space. I'm not happy about that.

This might explain why I had trouble hitting the golf ball the other clubs basically don't fit me any more. But turns out that's not a big problem since my doctor today (GD, whom I will be seeing for maintenance therapy here in Los Angeles for the next three years) told me I probably shouldn't plan on hitting for distance and need to "take it easy" while playing golf for the NEXT THREE YEARS while I've got this fucking portacath in me.

Which brings me to my next, and final, use of profanity. They accessed the portacath today and it HURT LIKE A MOTHERFUCKER. I haven't been in that much pain from ANYTHING this entire time, including the fine needle aspiration without the anaesthesia. They first used a freezing spray to numb the area. This hurt pretty bad. I was surprised they needed to do it because I thought it wasn't supposed to hurt. Little did I know.

When the pushed the needle through, it hurt significantly worse than a normal needle stick. It hurt at the site, like a normal puncture, and it hurt subcutaneously, like a bad bruise at the same time. That was in the first of the two lumens...which was easy enough to access.

The second one was not easy to access. They thought it might be clotted.

Long story short it hurt enough where I almost cried right there. And mind you, I had taken a Vicodin (because of the shingles pain) just before I went to the doctor, so it was probably fully working as they did this.

On the old "how bad is your pain, 1 to 10" scale, I would have ranked the 10 seconds where they accessed that lumen as a 9. That's as bad as the broken back felt, as bad as the abdominal pain that required Dilaudid, and as bad or worse than when they did the needle aspiration without the proper anesthesia.


No effing way.

I'm not going to allow BB or his people to do anything requiring access to the lumens that isn't ABSOLUTELY NECESSARY. That means no more contrast in the MRIs. They don't need to look at my brain function. It's fine. They've looked at it in the past and it's fine. They want the brain MRI with contrast? Too damn bad.

I may have this removed. It hurt FAR more than simply having an IV put in. The only reason I'm not definitively having it taken out immediately is that I think it *might* still hurt from being surgically installed in the first place. I asked the doctor about this when we left, saying "well, it probably won't hurt like this every time, right?" and he sheepishly shook his head and said "well...this is probably what it's going to feel like, yes."

Great. That's just effing great.

I have to go back in two days to have more blood work done because they want it done at the same time as a 24-hour urine collection, so we'll see how that feels.

Today is the first time in a long, long time that I am furious that I got this stupid disease. It's the first time that the elusive "quality of life" issue got in the way.

I know that the most important thing is that the disease is gone. And I hope and pray that when we get the SPEP data back in a few days, that's what it will show. But right now, all I can think of is the pain, discomfort, humility and life-changes that are in store for me. It's been more than an hour since they accessed the lumen AND IT STILL EFFING HURTS!!!

Wednesday, August 26, 2009

Something beautiful...

I've been waiting to post this. My shingles still hurt, although they aren't getting worse. I'm still tired, my shoulder hurts, yadda yadda. I'm getting blood work done next Monday with Dr. GD, here in Los Angeles, who knows both BB and SF well and who will be my primary maintenance therapy guy.

That, of course, wasn't the meat of the post -- I just figured I should provide an update.

No, the meat of the post is found on a scrap of paper that has been in my wallet since March.

I mentioned very early on that I hired a company called PinnacleCare to be a "health care advocate" for me. Essentially they have a team of nurses, doctors and researchers that do everything from attend appointments to schedule appointment to move medical records back and forth to do research, etc. They've been very helpful with all that, and they continue to assist me.

However the most meaningful thing they did was something I didn't hire them for.

When I was in the hospital in March, much sicker than I realized and ultimately with four broken vertebrae in my back, I received a care package from them. Among the articles was a T-shirt ("Cancer Sucks", it reads), some inspirational and humorous little books, some candy, etc. I also received a CD of soothing music with a note from one of the PinnacleCare people that said her son used to listen to that CD when he was undergoing treatment for leukemia. Her son is now 13, healthy, and dreams of one day being an oncologist.

Beautiful stuff, right?

But the most beautiful thing of all is on this scrap of paper.

When it was sent to me, I was really out of it on Dilaudid. I don't even really recall putting it in my wallet, and I only barely remember reading it when I originally received it. In fact, I'm only guessing it was from PinnacleCare -- it could have come from a nurse in the clinic. In any case, I read it and folded it up, and put it in my wallet, and forgot about it until recently, when I found it again.

It's handwritten, and it looks like it was written by a young girl, probably a few years older than Parker but no more than 12 or 13. Typing it in here now, it moves me to tears.

There are two poems and a note, handwritten.


A word can be
Powerful or
The word cancer rings in my ears.
A word, a word, who would of [sic] thought,
the word cancer could be so
devastating to hear, but me and my
Cancer, a word I thought never would
happen in my life.
But it did
Cancer, a word so powerful, harmful and sad.
But I can overcome the word cancer.
I am strong.
I am stronger than that one word.
So is my dad.
I am strong for my dad.
He will overcome that word.
Cancer, just a word.

Well...I'm sobbing now. I don't know who wrote this, or how it was passed to me, but I know I will treasure it above almost everything else I have. I shall fold it up dutifully, and return it to my wallet for the time being, until I can find a better place for it.

Thank you, whomever wrote this, and whomever sent it to me...and God bless you and your family, wherever you are.

Wednesday, August 19, 2009

Shingles and portacath update

Because there's not much else to write about.

I wound up keeping my appointment with my primary care physician, PZ, for this past Monday AM. He is one of the leading infectious disease doctors in the US (I started going to him long before this specialty) and I almost felt good seeing him about something other than strep throat. I always feel like I am cheating him. I also usually feel a little worried that everybody else in the waiting room has stage four schistosomiasis or ebola.

I didn't get either of these while there, but I did get a quick confirmation that it was, indeed, shingles, and quick confirmation that the therapy (4000 mg of Acyclovir) is appropriate. Then I got an explanation of what shingles is, why it is localized, what to look out for, etc. Fairly interesting, actually. Shingles is a re-activation of the chicken pox virus and it starts with a single nerve root and spreads only to the part of the skin that ties back to that one nerve. This is why it appears on a swath of skin rather than all over the body.

Anyhow, I itch and hurt (a dull pain, like a bad bruise) but it's not getting any worse at this point, so hopefully it's contained and will soon begin to abate. It's not the worst thing in the world but I certainly hope I don't get it again -- it's very difficult to sleep, between the itch and the pain.

When then doctor was examining me, he looked at the scar on my chest and said "is that the portacath?" "Yes," I said. "Does this you?" He said "Honestly...I've seen better." Knowing PZ as I do, this is tantamount to a less kind person saying "this looks totally horrible." He said the key is to see what it looks like after a month. It will be three weeks tomorrow, and it is still causing me pain at night and is swollen, though not nearly as much.

I continue to refuse to have bloodwork done until it can be done from this stupid thing, but my righteous indignation is beginning to give way to a desire (mostly on the part of Jill) to have current bloodwork. I will probably go in next week to have labs done, whether they can use the portacath or not.

I have my next series of tests scheduled back in Little Rock on Monday, September 14th through the 16th. Hopefully, the result of these tests will be a formal declaration of complete remission from BB and instructions to commence my three years of maintenance therapy. We are running into a little trouble scheduling the fine needle aspirations. I want this done under conscious sedation, and as usual the one scheduler there isn't as aligned with the plan as I'd like. My retort is simply that I won't do any FNAs if she can't get it scheduled under conscious sedation. My marrow was disease-free BEFORE the last round of chemo, and it will certainly be disease free now. There's no point in the FNA except to gather data, and I'm not going to undergo a lot of pain in order to do something just for the sake of data if there is no therapeutic value to me. I have provided a LOT of data before, and they gather data from my bone marrow every time they draw it. The cells drawn from the FNA sites were no different last time than the cells drawn from elsewhere in the marrow.

Still tired, but other than that, and the shingles, I feel pretty good. I am itching (haha) to start some kind of exercise to recover some lost muscle tone and shed the extra fat but the shingles, and to a lesser degree the discomfort of the portacath, are making this difficult. Hopefully in a week or so I can begin.

Friday, August 14, 2009

Self diagnosis proves correct

These stupid shingles hurt a great deal.

I called the clinic this morning, and described the situation, and they said that it sounds like shingles. They said to take 1600 mg of Acyclovir (I have been taking 400mg).

An hour later another nurse called and verified this same information and told me I needed to go see my primary care physician on Monday to get a definitive diagnosis, and in the meantime I could start with the 1600mg antiviral meds.

And then BJ called, bless her. She told me that I she had discussed the situation with BB and that it couldn't wait until Monday because very serious complications ("it can be very dangerous" said BJ, and I believe her since my mother's friend got this last year AND WENT BLIND FROM IT) could arise and he wanted to massively increase the dose of antivirals.

I didn't want to go to the ER and wait three hours. We called all our doctor friends that might pop by and have to answer the world's worst question: "does this look infected to you?" At any rate, nobody was home. Finally Jill's brother in law, who is an internal medicine specialist in Texas, helped us out and confirmed visually via the wonders of an iPhone and the Internet that I've got a textbook case.

So BB, it seems, treats shingles the way he treats MM: carpet bombing. I am to take 800mg five times a day for a total of 4000mg daily of Acyclovir. That oughta get rid of these things.

Meanwhile, it's Tylenol for the pain, and keep away from the kids, and keep a shirt on at all times.

Ugh. I told my mom and my mother-in-law, this is a small price to pay for getting rid of cancer. I'll deal with it.

Have a good weekend everybody.

Mostly good news...except the answer to "how am I the same as a ranch-style home's roof?"

I got a call a couple of days ago from a nurse at the clinic just checking up on me. She didn't seem light the brightest bulb, SO I AM TAKING THIS WITH A GRAIN OF SALT but...she did relay good news from the same blood tests that I'd done in my last days at the clinic there a few weeks ago now.

She reviewed with me the level of the M-protein under electrophoresis, which is the "can neither confirm nor deny, Senator" reading. In her words, "as researchers, we would consider this to be zero." Sounds great!!!

I then had the presence of mind to ask about the immunofixation test. More good news. I don't have an actual copy so the words may not be exact but they are pretty close. "There is an indistinct lamba band in the gamma region where the original monoclonal protein was observed -- it cannot be ruled in or out." That, also, sounds like zero or damn close to it.

I am waiting to hear it from BB officially, but collectively this sounds like formal Complete Remission to me.

The swelling is MOSTLY down from this thing implanted in my shoulder but I'm starting to realize a couple of things. First, just because the world's foremost MM specialist works out in the sticks doesn't mean that every doctor there that's not affiliated with his clinic is any good. I may have had general surgery performed on me by a barely-passed-his-exams moron. Hmm. Secondly, this portacath isn't quite as small as I figured. I can feel an outline about 2" by 1.5" that's sitting in me like a thick credit card. The swelling is still too pronounced to know where the little bumps are, so I haven't had blood drawn yet. Next week is my target.

Speaking of little to the unfortunate news. Turns out what I thought were spider bites are not, in fact spider bites. Like a roof on a mid-century house, I have shingles. This is not unheard of in people with compromised immune systems. Every day we went into the clinic or the infusion center, there's a sign saying "if you have come into contact with the chicken pox virus, please alert a nurse immediately." This is the reason, really, for the daily Acyclovir -- which I have taken in general but I've missed a couple of days, which I'm now regretting. It's far from certain that it would have prevented it.

Never having had this before, it is pretty painful. I've got it on my left side in a patch about six inches square and it feels like a bad burn. I'm going to call the clinic later today to let them know. My hunch is they will ask me to double up on the Acyclovir and potentially also go on Dex...the latter of which I *really* do not want to do but obviously if that's what they prescribe, then that's what they prescribe.

Otherwise, the only real side effect is exhaustion. I need to get out and exercise but both the surgery on the shoulder, and now the Shingles, will prevent me from doing so for at least another week or two. I tried to swing a golf club the other day, and the good news was that it didn't hurt. The bad news is that out of 40 swings, I missed the ball completely three times, and the rest of the time it went 30-50 yards, barely getting above the ground. I'm by no means a good golfer but this represents a significant decline in the quality of my swing. Not sure what it is, but it will work itself out. I hope resolving the Shingles will be as simple.

I plan to return to the office on November 16th, and start working from home sometime in October, pending how well my physical therapy goes (and, of course, assuming that my visit to the clinic in a few weeks doesn't turn up any unpleasant surprises).

One observation I had: normally, I am a workaholic. I was unemployed, essentially, while waiting out the end of a contract I had for about three months in 2003 and I was going stir crazy. I expected to be climbing the walls missing my job this time around. However with minimal exceptions, I haven't really thought about work. I found this very surprising.

But, interestingly, on the day I more or less realized that I'm in CR or headed there pretty quickly, I had the first rumblings of restlessness. I think subconsciously, I have been very, very focused on my health and have been able to put everything else aside without even really noticing the degree to which I was doing so. As soon as my subconscious accepted the fact that I was not going to die from MM, a switch flipped that allowed me to contemplate my job again. Pretty interesting and probably food for thought for others that are undergoing similar journeys.

Well, that's quite an update. I'll talk with the clinic today about scheduling our return visit and Shingles treatment and if there's anything enlightening, I'll post it here!

Wednesday, August 5, 2009

M-spike update (favorable) and a few other things

Hello folks.

It seems the Adriamycin et. al. takes a couple of weeks to finish mangling my cells. My hair, which was about 70% back in, is now falling out in clumps. I'm back to looking like Jason Voorhees, which is a pity. I will have to shave the head sometime soon, although I never completely lost the hair on the back of my head so I'm still hoping maybe there will be some coverage. I know it's probably dumb but it makes me feel like it is closer to coming back if there's something there. Although it looks appalling so there will be baseball caps for my foreseeable future.

I've had a host of other side-effects. Vision is a bit blurry beyond a few feet, I'm extremely tired, I have a hell of time getting a decent night's sleep (have been relying on Ambien the last two nights and I'm scared to go off it) and had a day of intense gastrointestinal distress. It seems odd to have all this happen two weeks after the cessation of the chemo but these things do bad stuff to one's body.

Oh...and the placement of the portacath is still swollen like half a tennis ball and it hurts like a sonovagun. Big scar will probably develop there, too. I'm not terribly pleased about it -- it's far too swollen to think of using it for labs at this point. Hopefully it will come down in the next week or so -- it's still only been six days since surgery.

All right. Now to the good news.

My M-spike is still not zero, but it is now less than trace. It is formally marked on the labs with an asterisk, and the statement "we cannot exclude the presence of monoclonal protein, however none is observed." I was so pleased with this report, which I received from my APN Kristin over the phone, that I didn't ask her about the immunofixation test (which obviously is still positive otherwise there would be a true zero for the M-spike, but perhaps that is the only reason why the M-spike is held at an asterisk?)

At any rate, I am pretty sure that I am formally, now, in near complete remission. Hopefully the M-spike will continue to drop, and when I resume labs (once the swelling goes down and they can find the port -- I didn't go through all this just to have them stick my arm) I'll get that much-desired zero reading. It certainly seems headed there.

I need to start physical therapy eventually, but right now my shoulder hurts far too much to contemplate it, and it affects every moment I make, with the sole potential exception of a stationary bike. I'm going to see where things are in a couple of weeks. I'm still too tired, I think, to do much of anything.


Editor's note: Re-reading this, it is an appaling agony column of complaints. I am VERY happy and VERY fortunate to be in near CR with essentially no M-protein in my blood under SPEP. My aches, pains, blurry vision and baldness are a small price to pay for remission. I honestly didn't mean to whine earlier -- I was recording what I felt as I felt it. But on the whole, the entry reads much too negatively. So please understand, the M-protein (I can't even call it a spike any longer) is the most important news!!

Saturday, August 1, 2009

Tamiflu could be the nightmare culprit

Just read that a UK study indicated that children on Tamiflu frequently suffer nightmares as a side-effect of the drug. I wonder if this is what caused my bizarre dreams?

Swelling is down a bit on the site of the portacath installation, which is good. I took Oxycontin yesterday and used Ativan to control the nausea, which seemed to work. I was exhausted all day today, which could be an effect of the drug hangover or could just be because I haven't slept that well the last two weeks. In any case, I look forward to a sound night of sleep tonight.

My beard started falling out rather abruptly -- I woke up this morning and was missing the connection between my mustache and beard on the left hand side. So I clipped it all off, much to the delight of my daughter (who told me tonight to grow it back). The hair on my head is falling out a little bit, but not in clumps...yet. With luck, it will just be a bit of thinning. If I lose it all again, it will be disappointing...though I will happily exchange my hair for being cancer free.

Have a good evening, folks!