Showing posts with label Chemo Brain. Show all posts
Showing posts with label Chemo Brain. Show all posts

Five Years

Five years ago today I was diagnosed with Multiple Myeloma.

I was in a hospital bed, surrounded by family, when Dr. Lee came in and explained what was the problem.  Good thing the family was there - I was so hopped up on morphine that if he had told me that I had a bad cold I would have believed him.

I was checked into the hospital about a week earlier by Dr. So, a neurosurgeon who I had an appointment with to see if he had any ideas as to why my back hurt so bad, and that I could barely walk.  He made me sit in the waiting room for at least two hours, only to put me into a examination room for another 45.  I was livid.  As he explained to me, I wasn't going home - I was checking directly into the hospital, just a short wheelchair ride away.

Tests, morphine, back braces, morphine, physical therapy, morphine, Magnetic Resonance Imaging, morphine, full body x-rays, morphine, CAT scan, and more morphine.  I did everything but poop - because of the morphine.  That glorious event took eleven days, and it was literally like passing a softball.

Looking back, my cancer was so out of the norms that it makes sense that it took so long for them to figure it out.  They started radiation immediately to shrink the tumors on my spine, and the first round worked great.

When I went back to Dr. Lee a week later I told him that over the last 3 days I had lost feeling in 3 of my fingers.  Bad Jim!  MRI again and another round of radiation to kill off the new tumors growing on my spine.

Revlomid, Thalidomide, countless other pills, I eventually stabilized   I walked again, though with peripheral neuropathy I am in constant fear of injury without pain.

The odds are still greatly against me - 70% chance of a return at any time.

There is no 5 year "Cancer Totally Cured" card for MM.  

I look at things differently now - I tend to be a bit more bold and for the most part I don't really give a flying f--- if I piss you off.  If I cut you off for wasting my time, understand that my time horizon is both shorter (or intense) than yours and philosophically more long term (yes, a conundrum).

I keep this blog up to remind myself just how far I have come - and how much further I have to go.


Now I gotta go watch Duck Dynasty...

jc

Realization...

Trying to describe chemo brain:

It is like you have holes bored into your brain.

You can touch it, feel it, see it, smell it, taste it, hear it... but you have no f-ing clue as to call it.

Oh, and it is a familiar it.

So, if I look at you funny, and then go up and lick you, THAT IS CHEMO BRAIN.

I need something to lick...

jc

Update from Dr. Lee's office

I had an appointment with Dr. Lee yesterday, and while I am still "OK", there are some trends that need to be reversed.

First, I am turning into a very large spud, weighing in at 275. True, a vacation followed by a week of preparations for a major party on the 4th didn't help, but still, I need to figure out how to loose weight. I have never voluntarily lost weight. Only twice have I lost weight, once when I had pneumonia, and then when I was having radiation. I need a third way.

Second, my IGD number is creeping up and up. Still within the normal range, but it went up from zero. Steadily.

The neuropathy in my feet and fingers are ever present. Typing -- being a touch typist -- can yeald surprising results. Walking and standing with little feeling in the feet can be a challenge too. I find that I don't lift my feet up, and snag stuff, causing a trip response. Since I don't have control over those micro adjustments that everyone uses to stay upright, I tend to stumble.

Memory, names, and descriptions can still escape me. Instead of caulk, I blurt out "white stuff in a tube that you squirt out to fill gaps in the trim before you paint stuff".

Bottom line, I am a fat stumbling, chemo brained idiot.

Eeesh, I need a nap.

jc

Health update

Well, I saw Dr. Lee yesterday, and all seems to be going well.

The bone marrow biopsy came back as generally OK. He noted some elevated numbers in my IGD, but nothing else -- which seems like an anomaly and not much for concern. Yet.

He gave me the surgical pathology report, and while I am not a doctor (or even play on on TV) I can read this:
NO EVIDENCE OF MONOCLONALITY IN B-CELL POPULATION
I take that as something good.

My visits to the chemo lab for AREDIA are to be cut in half, and I don't see Dr. Lee until next January.

Generally good, eh?

My back still has its days, and my bone marrow is only at 50% or so. If I get sick (something I don't do very often) it will take me much longer to get better. I really notice that I notice faces, but absolutely blank out with names (very awkward, socially). I am quite stiff when it comes to movement, except when standing still: my back does an involuntary wiggle that seems like it is under/over correcting itself. My stamina is OK for a while, but it takes me much longer to recover. I seem to be just barely stable -- my balance is just not as balanced as before. If I do get off balance, I don't have the quick (or even automatic) muscle response to correct it in time. Not good when dodging beagle pups.

All told, I think I am doing quite well. Considering that in March of 2008 I could only walk with a walker, and could not get out of a bed without horrific pains in the back, I think that I am doing VERY well. Just wish these 100 little things would hurry up and stop making me feel older than I am.

Gotta go clean up puppy stuff --
jc

Quick medical update

Well, I went to see Dr. Lee, and things are cruising along.

Yes, I have some Peripheral neuropathy that makes my toes feel weird. Something of a concern, if I stub my toe. I also detect a bit of it in my fingers, but nothing to get concerned about -- yet.

I will deal with it.

My back isn't 100%, but I try to stretch it out and keep it flexible, eat some calcium, and that keeps it in check. Related to that is the almost constant cramps I have in either my toes, legs, lower back, middle back, abs, and hands.

I will deal with it.

My blood counts are low-ish, but that is expected with the Thalidomide. Seems that it also is responsible for the cramps. Problem is, if I stop, the cancer can come back, bigger and badder than ever. This is keeping it in check for the moment. I quit, that is the last I can use this drug -- forcing me into a different chemo regimen that may or may not be as effective.

I will deal with it.

Slightly more challenging is the thyroid. Still have days of "manic-ness", and I recently refilled my RX. Well, I wasn't supposed to eat my calcium or multivitamin right after the 1 hour time limit is up. My pill regimen is getting complicated again.

I will deal with it.

Tomorrow, I have an appointment at the City of Hope for my "brain test", where they test my chemo brain functioning. Long, hot haul up, and a hotter haul home. It will be interesting to see if they finished that building they started when I was there a year ago.

Well, I gotta go get a kid out of school...

jc

One year ago...

... I was flat on my back in a hospital bed.

All anyone knew is that I couldn't walk, and had "something strange" on my MRI of my back.

It would take several more days before I was diagnosed with Multiple Myloma (IGD).

During that time, I had to have help doing even the most basic of all functions. Modesty and pride go out with the hospital gown.

I was fitted with a back brace, that kept me together for about six months. I was so glad to progress away from that.

Since then I have had three rounds of radiation, several different chemo therapies, and the big whopper, the massive chemo with stem cell regeneration of my bone marrow that happened at the City of Hope.

Lasting effects? Yea, a few.
  • After a year of various forms of sitting on my ass, I have little momentum.
  • I am up to 271 pounds, the heaviest I have ever been ( in April I was below 220, and had to use a belt to keep my pants up).
  • I have some memory lapses -- also known as chemo brain.
  • My fine motor skills are very shaky.
  • My legs swell up in the evening, so when I take off my socks for the night it looks rather shocking.
  • I have tattoos, but they are the remains of the radiation treatment.
  • I seem to have difficulty hearing things.
  • I smell smoke, a nice BBQ kind of smoke (the doctors are puzzled by this one).
  • My back is stiff (see the second item), and twitches when I stand still or lay down for the night.
  • I have a scar on my chest where the Hickman catheter was inserted in my chest and neck for 6 or so weeks.
  • I take chemo pills every night, and will have to for the rest of my life. A 28 day supply costs Kaiser $5200.
Perks? Some important ones.
  • Family and friends. Without them I would be long gone. Each well wish and prayer counted.
  • I can park in the blue spots (at least until June).
  • New perspectives, new attitudes.
  • I can pick up the girls again.
  • My wife.
All in all, it has been an emotional 365 days.

Looking forward to another few thousand days ahead.

jc

Shampoo!

Well, my golden locks are slowly returning to the point that I actually used shampoo today. Just a drop, but it did lather up in the shower.

Problem is that it is no longer golden... gray on the sides and dark on the top. We will see.

It is nice to have my energy back. This week I actually worked in the yard some, did a bit of plumbing, and worked on a project for NJS some.

Now, if I can only get my brain back on track. I seem to have serious challenges with names. No kidding. I was at a holiday party, met some folks (I have known them for years), and could not place their names. Everything else I knew, where they lived, what they do, their favorite color, everything. Total blank on the names. It also happened in the chemo lab. I saw the Cancer Coordinator Maven, and it took me several hard thinking minutes to place the name. Quite frustrating. Doesn't seem to effect people I see on a daily basis, but I have been out of circulation for a while.

I also need to get my flexibility up. I have troubles getting up out of a chair (nothing like last year), and my balance is a bit off for a second. If I get on the floor, I am like a drunk walrus trying to get up. I used to be able to put my hands behind my back and stretch, no more. With time and activity, I hope that this will improve.

Gotta finish dinner...
jc

From the pen of someone MUCH smarter than I...

Victor Davis Hanson is a person with a big brain. Mine: shrived and feeble, Jim just pawn in game of life. Excellent, hard hitting information. I will quote it in it's entirety, or you can just click the link. His point about hoping that Obama is not serious about "x" is enlightening... how can Obama NOT be serious about those subjects?

Collin Powell? Just another Washington insider keeping his social options open. He has NEVER been a conservative. He was a republican only because that is where the power was at the time, he just as well have been Clinton's Secretary of State.

Obama plays dirty, as dirty as Chicago politics can be. Rope a dope McCain (the first time I have mentioned him in this blog!) wants to play fair, clean, and by Senate and Marquess of Queensberry rules. That is why he is getting his butt kicked.

By the way, why has Obama NOT gotten over 50% in any poll? His GD commercials are all over the place, he is inevitable, he has more money than God. Why the poor showing?

jc

Questions Still Not Answered

Why didn’t Colin Powell and Co. jump ship in, say, June or July, and endorse Obama after many months of campaigning when his positions were already well known? That is, why wait until late October when, after the financial meltdown, Obama surged in the polls? Had Powell come out even in the first week of September, he could have demonstrated that although Obama was down by three points, he was willing to stick his neck out with a principled endorsement that may well have made him persona non grata in a McCain-administration Washington.

Why didn’t the media or McCain just ask Obama a few of the following questions: Why did you keep emailing and phoning Bill Ayers for three years after 9/11, when the country was gripped by fear of terror, and Ayers, like bin Laden, said that he had not done enough bombing, and had no regrets about the terrorism he had committed?

Why did Obama say in 2004 to the Chicago Sun-Times that he went to Trinity Church every Sunday at 11AM, and then later claim he had not been there that regularly once Rev. Wright’s venom was disseminated to the general public? Is Obama for, or not for, a simple yes or no, missile defense, nuclear power, off-shore drilling, and coal-powered electrical generation? There might be legitimate answers, but surely the public could profit by them, rather than worry over the Palin pregnancies, wardrobe, or Tasergate.

Why did the greatest furor against Palin originate with women, both liberals like a Gail Collins, Maureen Dowd, or Sally Quinn, or conservatives such as a Peggy Noonan or Kathleen Parker?

So far, none of them has adduced the necessary arguments that would justify their venom against Palin: they have not demonstrated that Vice Presidential nominee Palin has less government or executive experience than does Presidential nominee Obama; they have not shown that she has said anything in two months as disturbing as what Joe Biden says almost any day, and, in that vein, they have written few columns about Biden’s lunatic assertions, such as FDR addressing the nation on television as President in 1929, or that our nation’s enemies will test Barack Obama, and his reaction will so disappoint the American people that his polls will immediately sink; they have not shown that Palin’s ideas about shrinking government and keeping taxes low are less sound than Obama’s in time of economic downturn to raise aggregate taxes and expand government. So whence the vitriol, especially the frequent invective about Palin’s family, education, accent, or mannerisms, or the rather sexist suggestions that her looks bewitched either McCain or others?

Why do so many conservatives think that an Obama-elect might be prove a centrist, and so why do they use phrases like “I pray” or “I hope” that Obama might turn out, well, not to be Obama?

Jimmy Carter did exactly what he promised: raised taxes, grew the government, told the world he had no inordinate fear of communism, trashed our allies as retrograde right-wing authoritarians—and we got the Soviet invasion of Afghanistan, the Iranian hostage-taking (have we forgotten that the “Great Satan” originated as a slur against Nobel laureate Carter?), communism in Central America, the Cambodian Holocaust, and spikes of 12% inflation, 18% interest, and 7% unemployment.

For his first two years (until 1994 Gingrich’s ‘Contract with America’ revolution, and Dick Morris’s ‘triangulation’), Bill Clinton, as promised, raised taxes, raised spending, tried to ram through socialized medicine, and by fiat wanted to force the military to accept those openly gay.

So why would any conservative think that Obama—friend of Ayers, Khalidi, Meeks, Pfleger, and Wright, veteran of mysterious campaigns in which rivals in 1996 and 2004 simply dropped out or were forced out, erstwhile advocate of repealing NAFTA, controlling guns, stopping new drilling and nuclear plants, zealot for bringing all troops home by March 2008, advocate of a trillion dollars in new spending, and raising the tax burden on the 5% who now pay 60% of the aggregate income taxes, supporter of more oppression studies and racial reparations—would not likewise try to govern as he has lived the last 20 years?

Why would anyone think that an Obama would not wish to enact the visions of those who first backed him—the Moveon.org crowd, ACORN, The Huffington Post, Sen. Reid, Rep. Pelosi, a Chris Dodd or Barney Frank—rather than the late pilers-on like Colin Powell or Scott McClellan? We should remember that, unlike the cases of Carter and Clinton, Obama would have both houses of Congress, and a (Republican) precedent of the federal government intervening into the free market, in the manner of 1932.

The Fox Ambush

I don’t like dry-gulching journalism, but there was a strange scene when the Fox reporter caught up to Bill Ayers and stuck a microphone in his face as he went up the sidewalk of his rather impressive home: Ayers, with a bright red star on his T-shirt, shoos away the reporter with the apparent mumble “this is private property” before the police arrive. How strange that an advocate for communalism and an erstwhile attacker of police stations reverts to the notion of property rights and police to protect him from an intrusive reporter. Right out of Thucydides Book III and the strife on Corfu, when the historian warns that those who destroy the protocols of civilization may well one day wish to rely on them.

What Was Conservatism?

Few seem to know anymore. The decline in the fortune of the Republican Party has prompted some conservatives to claim they were abandoned, and now must seek refuge of all places in the agenda of Barack Obama—as if growing government, larger entitlements, and higher taxes are the proper antidotes to the unhappiness of the last eight years. One is unhappy with the excessive spending of the Bush administration and the former Republican Congress so he favors the greater spending of the new administration and congress to come?

The tragedy of the Bush administration was largely fiscal. There were, of course, two costly wars, the economic downturn after September 11, Katrina, and the unregulated Fannie and Freddie fiasco that proved the catalyst to the Wall Street subprime speculation.

But that said, by spending beyond the rate of inflation, running up large annual deficits, adding to the national debt, and voting in more entitlements that could not be funded with existing revenues, conservatives committed two suicidal acts. One, they discredited tax cuts, which under George Bush clearly brought in more aggregate revenue and primed the economy. Had we balanced budgets by spending restraint, no politicians would now dare to suggest the answers for our present budget woes were to be found in higher taxes.

Second, conservatives grew the size of the government. Perhaps No Child Left Behind or the Medicare Prescription Drug supplement was felt to be necessary to ensure bipartisan congressional support for the unpopular Iraq War, perhaps not. But when a conservative grows the size of government, he not only suffers the wage of hypocrisy, but he wins the additional charge of encouraging all others to do the same. The inattentive water master who opens the flood gates of the dam can hardly complain that torrents cascade out.

Yet Conservatism is pretty simple, and is based on just a few principles. Human nature remains constant, and thus is predictable across time and space. There is a certain humility that comes with conservatism, since the ways of the world, despite the technological chaos, are constant. We know, 1000 years past or right now, that the more we tax something the less we get of it, while the more we subsidize, the more we obtain—given that people will slack when they can, and won’t when they can’t.

Sometimes this conservative take on human nature can get a little depressing, when we know that punishments really do deter crime, or silly things like high walls keep or fines on employers really do keep out illegal immigrants, or strong nations ready for war are not attacked while weak ones eager for peace are. So here we are on the even of a great experiment, akin to the European socialist model that contradicts human nature–one that its creators over there are now fleeing from as we apparently, a day late, a dollar short, seek to emulate it.