A visit with Dr. A

I spent some time with Dr. A today. He seems eager to take me on as his full time patient. In other words, he seems to want to absorb me away from the SCCA.

Somehow I feel he understands the SCCA's philosophy of "follow the program" and he knows that once you're out of the program, you sort of wander around not knowing exactly where you are. I guess he's BTDT.

I have an appointment with Dr. B at the SCCA on Wednesday. I'll see how that goes. If I'm being put out to pasture, I'll be happy to be have Dr. A as my primary. The guy is good, caring, concerned. He's also a much better "all around" doctor with solutions to non-cancer issues.

Anyway, Dr. A did some extensive labs last week. It looks like my M-spike, the magic "cancer number" has dropped again. If true, this is a wonderful thing. Unfortunately, Ed and I are concerned about the consistency between two labs at the different facilities. We prefer to err on the side of caution. Either way, the number is low and it shows positive results from the auto transplant. Now we just need to keep the number down.

One thing I asked Dr. A to test was my testosterone levels. I think I could have told him the test results before he got the little numbers back, but he was surprised to see how low the numbers were. Tomorrow I pick up a scrip that will hopefully return part of my biochemistry to normal levels of masculinity.

I think some of you are surprised how candid I am in this blog, but it's my intent to help everyone understand the complexity of the cancer balancing act. This is not a simple head cold. One major issue impacts various major systems, and those systems impact minor systems, and those minor systems sometimes get big enough to impact the major systems again.

Cancer patients and their caregivers balance spinning plates. You've seen this act before. Every once in a while, somebody has to go back down the line and spin a plate again when it starts wobbling. Well, I'm just telling you which of my plates wobble.

So, if you're a cancer patient, don't feel like you're strange when there are side-effects. Treat them as part of the disease. Resolve them as part of your cure. If you're a caregiver, appreciate that your patient/loved one might feel like he/she is falling apart. Be supportive. Spin those plates together.

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Yes, I've changed the template.

You'll notice I've changed the template of this blog. I find this version to be more easily read than the previous version. (For some reason, the previous version also developed an HTML problem so it couldn't display the title.)

In any case, if you really have a problem with the new black background, it's not because my mood or focus has changed. it's a simple matter of practicality for me.

New addition

We have a new addition to the household. You can read all about it HERE.

Two odd things for the day.

It's February 1, 2008 and we have newborn chicks outside the window (chattering incessantly). Our winter has obviously been quite mild. These seem to be a bit early. Maybe I'm wrong, but I've never heard this chatter so early. I hope we don't get a deep freeze in Feb.... I'm not able, nor should I rescue them. Nature will have to prevail.

The other oddity happened at about two in the afternoon. I was standing in the kitchen looking out the back window when our local bob-tailed raccoon, who shall now be known as Bob, walked calmly across the back deck. Bob only has about 4 inches of tail.

In any case, I stepped immediately into "home protection mode" and rapped violently on the window. Bob simply looked up at me, unfazed. Then he stood there, silently asking "What is it you want? I'm a raccoon. I live in the neighborhood and I'm passing through. Do you try to make the squirrels go away?"

So I rapped on the window again and waved my arms. His response: "Like I've never seen THAT before. You bore me. I'm going back to my business." And with that, he moved on from the minor inconvenience I'd caused him

I guess city wildlife is more familiar with us than we are with them. As long as he doesn't try to live in my attic.

Exam and consultation.

I had an appointment at Virginia Mason Hospital today with a new doctor in the surgery center. I've been having a pretty severe problem with..... how shall I put this..... the absolute terminus of my digestive tract.

It's been an occasional problem since I was in my 30s, but since the sigmoidectomy in March '07 and the subsequent problems with antibiotics, chemo, and the recent transplant / auto-immune reactions, the issue has gotten much much worse.

Imagine the situation to be as bad as you want it to be. I'm not going to cover details. I'll simply include the word 'fissures'

The exam was painful but apparently pretty expository. Seems the whole problem can be solved with some specially compounded topicals and a bit of time. I actually had to find a real pharmacist, a compounding pharmacist (aka chemist) to make the stuff. It should be available tomorrow.

Looking forward to a resolution.
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Swelling and water retention.

Water retention is getting worse instead of better. I was told the steroids were the cause, but now that they're purged from my system I continue to have tremendously swollen ankles and knees. This makes movement difficult.

I suspect that too much sitting is part of the cause. I started to use Ed's stairstepper machine today. It's amazing the amount of muscular atrophy I've experienced in my lower body. It's only been 61 days since the transplant and the issues.

Yes, I've even tried compression garments. This is going to be a project.

Milestone

Some of you won't quite understand the importance of this as an indicator of my physical improvement and benefit to my mental health.

I rode my motorcycle on Sunday. Yup, pulled it off the centerstand, backed it out of the garage and down the driveway, turned it around and rode it a couple of miles. Came home, put it back in the garage, and put it back on the centerstand by myself.

Yup. Huge milestone. Really.

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Chemistry / Changes

Prednisone and its effects are leaving my system. Unpleasant sinus changes have returned. Why are the September 2006 sinus symptoms still a gauge of steroid levels?

Conversely, moustache hairs are starting to regrow. I feel 16 again in this area because I haven't had to shave since November 1, 2007. Yeah, I got a 3 month reprieve from the razor. I recognize this as a sign of recovery, but it sure was nice to be able to keep a smooth face without any work.

Testosterone levels seem to be increasing. They've effectively been at zero since November 1 also.

Ed and I have been reading information on two special situations concerning liver/kidney transplant patients. There are recent press releases, as well as printed papers/articles in the journals about transplant patients whose bodies have adapted to their transplant. The results appear to be related to the patients receiving procedures akin to mini-allo bone marrow stem cell transplants as part of their procedures.

The articles can be found HERE and HERE. Be sure to listen to the audio on the second article. It makes things much more clear.

On the home front, I've promised myself I would make a complete dinner for Ed and I every night. Very little "quick foods", even though we still have lots of ready-cooked foods we enjoy heating up...... but I'm going to augment those with as much reality as I can. It becomes a mini-project every day and it keeps Ed fed better than usual. Oh, I also make his lunch every day. Meatball sandwiches, ham salad, tuna salad, leftovers. Nothing major, but he enjoys it and it saves money.

Last night I made a sweet southern style corn bread from scratch.... well, I used a recipe, but it didn't come from a commercially pre-packaged box..... I had to measure, mix, etc. I know it sounds a bit goofy for a guy who used to take pride in his ability to cook, but I've never baked anything in my life. Both of us really liked it. I'll do it again. I may branch out!

Making Ed some empanadillas tonight. He's asked me to make tapas once a week.

Oh, and my big DUH for the day: I washed my phone with some blue jeans. I took it apart, dried it, and it seems fine.

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Consultation again.

I've mentioned that I have oncologist "A" and oncologist "B". I had a consultation with "A" this past Monday. I saw "B" today. These men work at two different facilities and have two different approaches to treatment.

"A" ordered a complete set of tests to establish a new baseline for his use. 7 vials of blood today when I went to the lab (the old fashioned way - they don't do central line draws). Yeah, he wants everything.

"B" ordered his standard two vials for a CBC and a Complete Metabolic Panel. That makes 9 vials today.

Some of my counts are down, like my platelet count that's only half of what's considered the bottom of normal. "B" isn't worried about it. He says a certain amount of instability is normal at this stage.

So the plan is to see "B" in two weeks. No need to come sooner. Just hang in there and we'll visit every once in a while to see where we are. I'll mostly wait for the 'restage' date that involves another bone marrow biopsy, skeletal MRI, and blood tests. That's when we find out what the next step is..... Mini allo? Another full auto? Do nothing except maintenance?

I'll visit with "A" sooner than with "B". Gotta say, "A" doesn't like the aggressive mini allo program. He considers it dangerous (as do I). He'd rather see me on maintenance. He's putting me in a physical therapy program. He wants me to get better without doing anything drastic.

I like "A". "B" is a good guy too, but sometimes it's not fun jumping onto his freight train. "A" seems to be more interested in quality of life. "B" seems more interested in absolute cures.

One nice piece of info. Our insurance co has authorized a total 0f 15 complete HLA searches. Since we've used two for testing of siblings, that gives us 13 more people to do complete scans on. Now we just have to find 13.

But, truth be told....... Owing to some HLA type oddities, they expect to find zero matches. None. Nada. No Allo. That would leave us with either a second Auto (like I just went thru) or a maintenance program.

Of course, we won't know anything until we restage and do all the basic tests when I'm 80 days out (or 80 days old if the transplant was my new birthday.)

November 30 to Feb 20 is 80 days. I'm just gonna hang out for 4 more weeks.

The hat.

Ok, I made a big deal about the hat. Here it is with me under it, and one image from the manufacturer's website. Click to make the pics larger. It won't make me look any better, but I'll be bigger.

(I'm not really fond of what the steroids have done to my face, but yes, this is the current me and it's a lot better than 6 weeks ago. Everything continues to improve.)

Another weekend comes around.

Here's the update for the week. My prednisone taper (scheduled reduction in dosing over time) has come to an end. Today is my 2nd day free of pred. Ultimately this is a good thing, but now my body has to rely on itself instead of the magic chemical, so there are changes happening again. The yo-yo does the 'yo'. Let's just say there are minor stresses. I'm just whining. I'll get over them. It feels like an exercise program. Changes, minor pains, different feelings. Nothing more.

On the home/life front, Ed and I took a day trip up to Vancouver, BC, Canada because it was going to be a sunny day. Yeah, that was our excuse. We drove around, saw some sights, ate Filipino food, and walked a bit on Granville Island where Ed bought me a hat to keep my dome warm in style. Then we drove home. Total trip, about nine hours. We had a nice day.

Here are some pics. Click on them to make them larger if you want.

Southern Vancouver (CN99) looking north into Vancouver proper and Grouse Mountain, with the rest of the range beyond. Pretty representative of the daily real world of Vancouver.

Another view from much farther north and west, but still south of False Creek.

Finally, a pic of me on Granville Island. No, that's not the hat Ed bought me.

Yes, there are much nicer views and places in Vancouver, but that's not what we did yesterday. We just went there and did it a bit like the locals. Sometimes we like being "reality tourists".

Congratulations!

I want to congratulate ROOBEEDOO and her husband FL on their recent wedding and the great news that FL has been put on a Thalidomide maintenance program. His MM has apparently achieved a plateau that we hope will allow him to cruise along calmly for a long while.

Back on the health front.

I had a consultation with my regular oncologist today. I got good news.

The autologous transplant seems to have done some good! My M-spike is down to 0.4 g/dL. That's as low as it's ever been, and he expects it to drop another tenth to 0.3 g/dL.

What does that mean? It means my disease has retreated. It hasn't surrendered yet, but we're beating it down. We'll do a complete set of tests again at ~80 days. I'm at day 47 now.

As far as the allogeneic transplant goes, we continue to follow up with the facility and we're staying informed. Limbo shouldn't be done in silence.

What qualifies?

I've been wondering about what qualifies as a cancer blog post. I think I've figured it out with the help of a couple of other bloggers. Apparently, this whole thing is supposed to be about LIFE.

Well, I've written lots about the hard part of my recent life. I think its time to include some of the positive parts of la vida buena (the good life).

Yesterday, I worked my butt off (comparatively speaking). See, I had a pair of electrical projects I wanted to complete on my motorcycle. Simply put, I added accessory power outlets and a heat controller / outlet for an electrically heated jacket. No, it doesn't sound like much, but here are some bad pics and a description of the work.

Sorry for the low quality. Click on the pic if you want a larger version.



These will allow me to plug in my air compressor, any cigarette lighter device, and also let me plug in my small battery charger to maintain the battery on the bike.

The second installation was the heat controller for the electric jacket. Here's a simple pic of the power outlet. Yes, the picture is lousy.



Realize that I had to take the motorcycle apart in order to install the components and do the wiring. The fuel tank, tail section and much of the bodywork had to come off. I worked until about 6 PM to design, reassemble and test the modifications. It was a long day's work for me right now, but pleasantly productive.

And then.......... Ed and I went out with our friends Pam & Suzie for Italian. We talked, we gossipped, we had fun. We got home at about 10 PM. Fun was had.

So what does any of this have to do with cancer? Everything! Physical activity, execution of projects, social activities........ Our life continues to move forward.

I hope yours does too.

Weekend Update.

I'm obviously doing better every day. Ed and I have been out to dinner several times, attended a birthday party, and gone shopping/doing things. Progress is sometimes measured in small, indistinct steps.

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Thoughts on friends.

I've been thinking about friends lately. Friends in general, not specific individuals.

I'm a lucky guy. I have lots of friends. Lots. They fall into a couple of different categories. A limited few fall into the realm of "I need to borrow $50,000 dollars for a year" and there'd be no worry between us. Of course, those kinds of friends never ask for $50K, nor do I.

The largest majority of people I can call friends are, oddly enough, motorcyclists. No, I'm not talking about the extreme Harley crowd or the "Wild Hogs" midlife crisis set. I'm talking about mature professionals with a lifelong passion for two wheels. Most of these people have progressed from smaller dirtbikes as kids to other types of street, race, or touring motorcycles. These are people who have developed a passion and enjoyed it for years and years. They're people who continue to cultivate their passion, ever advancing in their growth.

The truth is, I completely respect these people. They're generally quite social, self-reliant, able to be independent, yet well rounded professional adults. They tend to stand on their own two feet and are fervent about living their lives on their terms.

They come in all shapes, sizes, ages. All sorts of demographics. From closeted gay Republicans to arch-Liberal single females. That's a pretty broad spectrum once you realize that most of them are regular family folks. Our commonality is a love for something only we understand, each in our own way. Interestingly, we respect one anothers' individual perspectives.

And yet, despite our differences, we share a common ground. We have the ability to point at one another and say "I need your advice." or "I need your help with something." We give and take from one another, including sage and caring words of wisdom.

These things make us friends: Trust, respect, commonality. That's really how simple it is for us. I'm lucky to have these friends.... Very lucky.

Thankfully, we can all develop new friends. Extending a hand, a kind word, a bit of support, or sharing a concern can garner new growth and opportunity for everyone concerned.

Everyone wins.

Minor anniversary.

I just wanted to mention that today is the anniversary of the luckiest day in my life. I met Ed eight years ago today.

Who knows how and when fortune smiles upon you?

Two things.

We had a heavy consultation today at the SCCA. The oncologist is a data freak with the bedside manner of a computer. She spent the entire consultation talking to and looking at Ed, not me.

But that's her. At least you get straight data.

Well, the straight data is this. We get to follow a different highway for the next several (3-6) months. We don't know exactly where the highway leads, but it's supposed to be smooth and gently uphill all the way. I'm supposed to improve and maintain as my next phase. That's it. Drugs, maintenance, improvement. Life. Regular life.

But here's the other side of the straight data. It has to do with the HLA typing/matching. See, because of the complexities, they won't do an allo transplant on me unless I get a 9 of 10 match. We already did the numbers for a 6 of 6 match, but there are lower levels to research. We knew that but didn't expect to hear what came next.

Because of a couple of "rare" HLA typing factors, she expects there will be no donors on record. In other words, no donors, no transplant, no cure, no nothing.

But we'll throw the dice. We'll do the search. Stranger things have happened.

So, we'll just drive down the highway of life with the cruise control set until our GPS tells us to explore a new offramp. (Either that, or the low fuel light comes on.)

I guess what we have to realize is that we've been told to just get back to living........ A reiteration of "just put my pants on every day". I can live with that. I mean I can literally live with that. It's OK.

Heck, I might dress for the office in the morning. Just because.

A re-read creates a blessing

I just spent an hour re-reading this blog. I write a lot.

Unfortunately, most of it's not pleasant, so let me turn this around a bit philosophically. I really didn't see anywhere in my writings that provides an alternate view on the situation.

Cancer can be a blessing.

Very few people get the opportunity to plan their own departure. Cancer patients get to make their lives 'right' with the world around them. Cancer patients get to care, change, feel, and recognize the value of others.

Yes, that's a blessing.

Give me a minute to explain the perspective. See, my father died suddenly and unexpectedly. Mom simply went over to the house to pick him up for Thanksgiving dinner and he was dead. Yeah, it was a shocker, but the sad truth is that very few of us cared. See, we didn't know who dad was. He was an outwardly social guy who was also an emotionally closed-off drunk with his family. Two-personality dad...... Heck, he was so distant with us that we didn't even call him Dad. He had a nickname we'd used since we were something like 10 years old. It wasn't even Pop. It was obscure.

So, when he died, we had no idea who he was. He didn't know who we were either. We never shared.

Now, as a guy who can't assume I'll get tomorrow, I have the chance to change the family dynamic. And hell, if I can't change the family, I can change my own dynamics.

I can share. I can express. I can emote. I can change and I can promote change in others. I can get right with them and they can get right with me.

And I'm not just talking about family. LOTS of friends have turned around. LOTS of friends have shared, emoted, expressed. LOTS of them have new perspectives on their personal lives.

See, none of us is guaranteed tomorrow. Not even me who has a prognosis for when it'll be time to go. I could get hit by a bus in the morning and ruin all the nice transplant plans. Life happens even to cancer patients.

Cliche' songs like "Live like you were dyin' " are SO reasonable. They incite the terminal patient to do all the things he/she would have waited to try because there was no urgency. Cancer patients get urgency and short time-frames.

So we take our little blessing and try to cram our shortcomings into our prognosis. If I've got 4 months, I need to be surfing in Maui in two weeks! I've gotta tell mom I love her. I've gotta scratch my partner's back at night just because I know it makes him feel good.

Cancer patients get the time to make it right. They get to adapt to the Tao, the way of the universe.

It's kind of hard to explain. Cancer has brought Ed and I closer because we allow one another to see what's inside. The same happens between my brother and I. We've never been this candid in our lives and I'm really starting to understand his innermost thoughts now. Heck, I even shared some baggage with my mom on the phone today. I think it was therapeutic for both of us.

So, my blessing has been to be able to share my life with others, and allow them to share their lives with me.

I actually get a lot of fan mail from friends and strangers. It's amazing to me that my written words can have an effect on others, particularly relative strangers. I get thoughtful, respectful emails and messages from people who see me from afar. It's shocking and wonderful at the same time.

And it's a blessing. It truly is. I won't have to die alone or lonely. The people who know me will absolutely KNOW ME.

And if I wanna be completely selfish about it, I can simply "burn down the mission" and take my exit in a blaze of glory.

How many people take advantage of the time they're granted on this earth? Most people trudge thru the day, expecting another one to come along. Cancer patients know when the clock will toll and spend their time making their universe right.

So, from my perspective, let me tell you to hug your kids. Tell your parents you love them. Scratch your partner's back at night. Make love. Be good to people and they'll be good to you. Remember, you don't know how long you've got. Stuff happens in life.

Enjoy what time you have with the best people you know. Meet new people. Find some good ones. Change your lives collectively.

Get up in the morning, put your pants on, and move forward thru life. There's no difference between a healthy person and a cancer patient except that we've recognized the blessing.

And so, cancer has its little silver lining...... it's blessing for all of us. We get to enjoy our remaining days. We get to change. We get to change others.

That's a blessing!

Another perspective.

I was just reading our other blogs. They read as if our lives completely stopped at least 6-9 months ago. I haven't written about anything either of us have been involved in, nor can I think of all that much to write about besides my health situation.

I've gotta change that. Not the blogging, the positive activities we've done. Gotta LIVE.

Progress?

The last week has been odd.

The Prednisone (steroid) taper has been going strangely, in that I'm retaining water like a baggie. Heck, I'm even scheduled to see an opthalmologist on Thursday to do something about the amount of water collecting between the whites of my eyes and the thin, clear outer layer of skin that covers the whites. (Sclera?) Yeah, it looks like I have tears in my eyes all the time, but they're just little baggies of water.

Heck, my legs are starting to look like my great-grandmothers. Wondering if I should go out and buy support hose that I can roll halfway down my legs..... NOT!

The other side of the Pred taper is an incredibly grouchy mood. I mean NO tolerance for what I perceive as BS. I almost ate a waitress at a restaurant the other night. She was horrible and I just went off. I mean OFF and this was in front of friends with children. Drugs are strange. I've even been intolerant of Ed, and that's pretty stupid of me.

Anyway, on the good side, my GI, diet, and food tolerances are improving greatly. It's amazing to think I had diarrhea for 4+ months. Not fun.

General health is improving and I seem to feel physically better about 2-3% every day. I'd take that kind of return on the stock market every day!

I just hope the attitude problem goes away soon..... I'm trying to control it because I know it's there, but it's difficult to just let things slide...... very difficult. Odd.

Silly random facts

We're going thru the books tonight. Wanted to point out a few shocking financial things.

1) My most recent stay in the hospital = >$76,000.

2) Salt water infusions delivered to my home = ~$250 per day for salt water.

3) Regular daily drugs = more than $2000 per month

4) Transportation, costs of visits, doctors, procedures and sundry. Lots of dough.

December cost about 100,000 dollars. Simple fact. I won't argue against some sort of national health program. If I hadn't had insurance, Ed and I would be on the street with me dying.

Pills: Obviously they work, but how do they know? I mean, I put a bunch of drugs in my body all the time, but why don't the pills all join one another down there and start breeding themselves into a new kinda drug? (Yes, there are interactions sometimes, but nothing like what may be possible.) MacBeth's witches must have been quite the chemists. I take a pill and it does what it's supposed to do. It's magic.

Diet: It's returning. We went out for Chinese last night and Indian tonight. I tried Chicken Saag, which is spicy spinach with chicken. Yeah, it was spicy and I loved it. None of the stuff appears to be killing me afterward and it appears that my upper and lower GI are beginning to function as they should with this kind of diet. We did Thai Khau Soi (spicy) last week and we've been doing the Emeril Lagasse "Bang" here at home. Food is starting to become a major interest around here again. I love food. Upswing while on the downslide.

Eyes: Getting jaundiced more every day since I stopped hydrating. I'm also getting pockets of water between the whites and the external layer of the eye. Basically, water pockets. Everyone is saying No Big Deal. Is it p-GVHD or is it the steroid crash or is it that I'm off hydration for now? Well look into it more tomorrow at the clinic.

Basically, I'm getting better. Slowly, but better. I do things. I stay awake. I try not to cry like a madly menopausal woman. (Although it happens a lot lately for no real reason.)


One last thing. BJShredder, an old bud from back in the day sent a link to an article he says should have been written about me. Here's the link:

http://www.superbikeplanet.com/2008/Jan/080104.htm

Made me cry.

In Response

An anonymous commenter wrote:

"Hi - so can you explain again your need for an allo? Is it because of the GVHD? What kind of expectations are there for you after a successful allo? Also - what are the percentages of people who get GVHD with an auto? Asking because my dad will be going through an auto in the coming months. Waiting on his protein levels to come down. Thanks and i really appreciate your blog - it's a great resource for us. We hope the best for you."

Ok, so here's the response:

My need for an allo is sorta complex. See, I don't have run of the mill multiple myeloma. I have what are called complex cytogenetics. What does this mean? It means that the cancer (MM tumor cells, or plasma cells gone wild) have mutated into a new type of MM cells. In effect, I have an unstable type of MM. Yes, it sounds odd, but that's the net effect of complex cytogenetics. They don't know if the cancer may be changing still, but they do know that I've got a pretty aggressive case of MM. The cancer cells are evolving rapidly into something that can "survive" against the assault of chemo.

So, a tandem-auto transplant (one auto after another in short order) would have been a normal course of treatment for a person with simple cytogenetics. The autos would have potentially put the MM into a quiet stage for some time, up to several years in fact. In my case, it was merely a hope that a single auto would buy me some time and ameliorate the advance of the complex cytogenetics.

HOWEVER, we don't have any clue if the auto knocked down the MM cells. We know that my stem cells reattached themselves to me and have become bone marrow cells again. But since we still haven't done a new bone marrow biopsy, we don't know what's floating around and growing in there nowdays. It will be another 45ish days before a new biopsy is ordered. Premature testing gives unreliable results.

Therefore, I'm in an odd sort of limbo. There's a chance (small) that the auto knocked down all the cancer. Nobody is expecting this to be the result, but we're still hopeful.

And so, I'm planning to do a mini-allo from a stranger. It's my only way to kill the cancer if the auto didn't have the desired effect. Obviously if the auto 'took', then I can cancel/avoid the allo for a while if I want.

So, why the allo and what are the potential outcomes? Well, I cover them pretty well in this copy of a prior post:

"Option 1) - I can stop treatment completely and just let the disease consume me. Result: Death within a few short months.

Option 2) - I can stop additional procedures and go on a maintenance program of drug cocktails. Result: Death because of the complex cytogenetics involved with my level of disease. Maintenance has a very very low success rate.

Option 3) - Proceed forward with an allogeneic (allo) transplant from a stranger. This gives three potential outcomes.

3A) - Approximately 1/3 of all allo transplant patients get no GVHD (Graft V Host Disease). These same patients also get no GVT (Graft V Tumor) which is the objective. Result: Death as in 1 and 2 above.

3B) - Approximately 1/3 of all allo transplant patients get severe chronic GVHD, resulting in kidney failure, blindness, combinations of issues, or death. Result: Maybe worse than death.

3C) - Finally, another 1/3 of allo transplant patients get mild to moderate chronic GVHD, resulting in desirable GVT to combat the disease, but also resulting in as much as 1-3 years of continual treatment against the effects of GVHD. These treatments almost all include heavy use of steroids and other drugs. In other words, 1-3 years of what I'm going thru right now."

Hopefully, that answers many of the questions. There is one thing I want to clear up concerning the pseudo-GVHD I experienced with my auto.

First, it's not really GVHD. Graft V Host Disease can really only happen when the donor cells attack the host. Pseudo-GVHD is a misnomer for a condition under which my body reacted severely to the reintroduction of my own stem cells. It's basically an auto-immune reaction to something that shouldn't happen. Apparently, the whole thing is so rare that most people at my treatment facility (a large transplant operation) have only seen a handful of cases in their entire careers.

Mucositis is a virtually absolute side effect of the chemo they give a person for an auto. It's a given and they treat against it even before the process begins. Be ready for it and believe they're right before you try to 'tough it out'. No sense in fighting the inevitable.

Anyway, I hope this clears things up. If there are any more questions, I'll try to respond.

Separation anxiety

I was talking to the daughter of a cancer patient a few days ago and we discussed an interesting phenomenon.

Long term care patients sometimes suffer separation anxiety when they're finished with treatments. Allow me to explain:

Once your life turns toward "the dark side", you become fully involved in a process that treats and/or cures your condition. It's a long undertaking and people become fully involved. This isn't like catching a cold. Thus, your whole life begins to revolve around cancer, treatments, doctors, schedules, trips, visits, procedures, etc., etc., etc.

You're no longer a mom, dad, lover, motorcyclist, geek, guru, or whatever. You're a full time cancer patient. It's literally your life and it becomes your lifestyle. And so, as a normal humanoid, you become involved with the lifestyle. You meet people in the lifestyle. You learn to like some of these people. Certainly you get used to the activity and the "doing".

But then one day the people at the facility say, "Congratulations! You're DONE! You're out of here."

Some part of us says, "YIPEE!" The other part of us says, "WTF am I gonna do now?"

It's like losing a job or being jilted by a not-so-perfect lover. Pleasure mixed with pain. Relief mixed with questions about tomorrow.

After all, if I'm out of here, what will I do tomorrow? When and how will I see my friends? How will I have (what little) outside communication with lively people? Why do I feel the way I feel?

Separation anxiety. That's what you feel. You're being cut off from the world you know and now you have to build a new world.

I was told this morning that I'm out of here. I'm done. "Have a nice day." "Don't let the door hit you in the ass on the way out." It made me feel strange.

Of course, they were slightly wrong. People were reading that I was being released from the "auto" team and they were assuming I wasn't coming back. Of course, they didn't realize I'd be back pronto for a mini-allo....... thus assuaging my anxieties.

On the other hand, I get a couple of weeks vacation before the allo process begins. I'll try to put them to good use. Maybe I'll work on a little muscle tone.

Blessing? Curse? Just another "thing to ponder"? I'll let you know.

The slide begins.

I'm high as a kite on Prednisone steroids. Have been for several days. Sleep has helped, but now that I'm sleeping enough, the rest of the side-effects are reappearing.

I have to repeat that Prednisone is far easier on the psyche than Dexamethasone ever was. Dex has pointy edges. Prednisone is smoother. It's like the difference between Maker's Mark and rotgut whiskey. Both can have the same net effect, but on is much more mellow and pleasant than the other.

But now begins the slide. I'm on a Prednisone taper. The dose will begin to diminish starting tomorrow. 80 mg today, 70 tomorrow, and a varying taper thereafter for about two weeks.

I'm ecstatic that they're not just gonna drop me out of the sky like they used to do with Dex. The fall would be devastating. Dex was 4 days on, 4 days off. The Pred has been a full week and the high is a bit extended from my Dexi-days. I wouldn't have enjoyed feeling like I wanted to die for the next 5 days (or so).

I've been a bit off my mark today. Probably just over extension from yesterday because I was about as active as I've been in a month. That was a good thing, but I'm paying for it a bit today. I'm also going to have to watch my eating. I've been grazing to the point of staying full most of the day, and that's a load on my system. No intake a few short days ago. Too much intake for the last two. My pendulum is swinging between extremes and I need to sorta stop it in the middle. Moderation.

Oh, a silly side note. I have to eat a Lorna Doone cookie 4 times a day. Well, that's not exactly true, but I have to take an oral steroid that's suspended in corn oil 4 times a day. It was recommended that I take the 1cc of oil and soak it into a shortbread cookie. So, I get dessert 4 times a day. (No, the medicine doesn't taste bad, and the corn oil is a bit like butter so it's pretty palatable.) Anyway, that's the goofy side of cancer treatment. "Did you have your cookie?"

I wonder if Jim Jones gave out cookies with the Kool-Aide?

Sleep, precious sleep.

Sleep. It's an amazing thing. See, I haven't been sleeping for several days because of the Predisone steroids they have me on. My brain runs 27 hours a day and it tries to make my body do things it's too tired to do, so I've been completely worn out for the last week.

Add that little problem to the holiday madness of friendly visits/parties/dinners/drinking, and I was one TIRED puppy. (Yes, I sorta broke chemo policy on New Year's and had a few Mojitos at home.)

Regardless, the exhaustion created extra stress, which created exhaustion, which stressed me, etc., etc., etc. The circle went 'round and spun faster every day.

And then there was last night. I took an Ambien (Zolpidem) sleeping pill. I've never been fond of them because most of them give me a hangover. Let me tell you, Ambien seems wonderful. I slept well and completely last night. Yes, I still had to get up 4 times to relieve myself, but outside of a little staggering, there was no problem with waking for bodily functions.

But I do know that I woke up this morning with a decent attitude and a brighter outlook on my life.

From a practical standpoint, I'm still aware that I'm figuratively stuck in a New York City high-rise tenement that's on fire. I can see and smell the smoke, but my front door isn't hot yet and the window seems clear. (I just have to hope the ladder trucks can reach the window.)

However, since my tenement door isn't hot yet, life goes on. I can make lunch, watch the goings-on outside my little flat, and try to experience the show. It's much easier now that I've slept well.

Aux fin de 2007

At the end of 2007. December 31. Another year has gone by. And so, a couple of observations without any particular retrospectives.

I'm glad I have Ed. Without him I never would have bothered to fight the fight.

I'm glad modern science has given me 2007. It's been an odd year, but it's been a year and that says something.

I'm thankful for all we still have. I'm even thankful we have family.

But now it's time to look forward into 2008 with some information we got today from my oncologist. We had a consultation with my original SCCA oncologist today, who is sorta "the" multiple myeloma guy. We looked at statistics, options, ideas, and made plans for the future.

See, there are really only two ways out of the current situation. One is to die. The other is to get sick(er). Let me explain.

Option 1) - I can stop treatment completely and just let the disease consume me. Result: Death within a few short months.

Option 2) - I can stop additional procedures and go on a maintenance program of drug cocktails. Result: Death because of the complex cytogenetics involved with my level of disease. Maintenance has a very very low success rate.

Option 3) - Proceed forward with an allogeneic (allo) transplant from a stranger. This gives three potential outcomes.

3A) - Approximately 1/3 of all allo transplant patients get no GVHD (Graft V Host Disease). These same patients also get no GVT (Graft V Tumor) which is the objective. Result: Death as in 1 and 2 above.

3B) - Approximately 1/3 of all allo transplant patients get severe chronic GVHD, resulting in kidney failure, blindness, combinations of issues, or death. Result: Maybe worse than death.

3C) - Finally, another 1/3 of allo transplant patients get mild to moderate chronic GVHD, resulting in desirable GVT to combat the disease, but also resulting in as much as 1-3 years of continual treatment against the effects of GVHD. These treatments almost all include heavy use of steroids and other drugs. In other words, 1-3 years of what I'm going thru right now.

So, the only way I can "get out" of this is thru 3C above. Yup. That's it. Die, wish I was dead, or suffer some more. Funny thing is, "suffer some more" is starting to sound like a good plan. Never mind that there is really only a 33% chance of success thru suffering. Those outcomes aren't options. I don't get to pick which potential outcome I get. I simply get what's dealt to me. That's it. I'd take these odds in the state lottery. They're a little more difficult to accept when it comes to living or dying (or suffering).

One can hope. Mostly, one can fear.

By the way, we opted for the allogeneic transplant today. The oncologist signed the paperwork to begin a formal donor search. When there's only one way out..........

Prednisone High

These steroids (Prednisone) are freaking me out. I'm on 80 mg per day and they're making me take them early in the morning so I might eventually get some sleep sometime about 2 am the following morning.

Yeah, they're strong.

The difference between Dexamethasone and Prednisone is a matter of crudeness. The Dex is pretty crude, the Pred is pretty smooth. Dex puts an edge on everything. Pred has rounded edges everywhere. Pred also doesn't seem to cause the anger management issues that Dex does. Mental control might be Pred's biggest strength.

But the physical effect is ultimately the same. Irritation of the esophagus. Difficulty eating because of the irritation. Severe heartburn 24/7 with no medical relief allowed (some pills require an acid environment to work, so I can't take any of the modern antacids).

There is also a loss/lack of sleep. A tendency for my brain to want to run my body harder and longer than it should. Suddenly I find myself completely spent and my brain still says "wassa matta, wimp?"

I won't even talk about the physical changes steroids continue to make to my body.

The only thing I'm really worried about is what the downslope of this roller coaster ride will be like. They're leaving me on this 80 mg regimen for 10 days. I have no idea how (or if) they intend to taper me off this junk. If they don't taper, I'll wanna DIE for about 5 days. The crash will be horrible.

Anyway, we're gonna do some socializing over the next couple of days. We're gonna do dinner and/or drinks (don't tell anyone) with our "girlfriends" Pam and Suzie, and then we'll do lunch or dinner with our two "adoptive nephews" Christian and Ethan and their parents Chat and Jose on the 1st. (It's actually Christian's Bday on the 31st and there's a party, but the infectious load at such a gathering might not be good for me. Remember, I have no immunity to childhood diseases any more.)

Oh, and as a side note to the "no immunity" thing, there's a very strong rumor running around that I probably won't have any allergies either. It's even been suggested that I could try to use some drugs that have previously caused anaphylaxis (a potentially deadly allergic reaction). Obviously these experiments would need to be taken under controlled circumstances, but it would be interesting to see what happens. After all, one of my deadly drug allergies is to aspirin and to a lesser degree, all its derivatives (all the way down to NutraSweet which actually only causes a sinus flare-up).

If that turns out to be an interesting and desirable side-effect, I still wouldn't recommend this particular curative process for allergic people. The treatment is far worse than seasonal effects or food sensitivities. "We can cure your allergies, but we have to almost kill you a couple of times for it to work." That doesn't really sound like a good marketing program to me.

Lyrics to Superman (It's not easy) by Five For Fighting

Yeah, I know it's cliche', but if there were ever a song written for me, this is it.

SUPERMAN (It's not easy)

I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me

I’m more than a bird...i’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see

It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me

Up, up and away...away from me
It’s all right...you can all sleep sound tonight
I’m not crazy...or anything...

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me
Inside of me
Inside me
Yeah, inside me
Inside of me

I’m only a man
In a funny red sheet
I’m only a man
Looking for a dream

I’m only a man
In a funny red sheet
And it’s not easy, hmmm, hmmm, hmmm...

Its not easy to be me

Some good info

I got my HLA typing sheet from the SCCA yesterday and plugged my primary HLA numbers into the National Marrow Donor Program (NMDP) Registry.

Matches are done on the first level with 6 markers. A 6 of 6 match is considered a terrific place to start. There are a couple of levels beyond that, but the 6 of 6 is what you're looking for on the first run.

Looks like I have ONE existing umbilical cord sample that's a 6 of 6. This is a good thing because it's already frozen and theoretically available.

On the other hand, I have something like 263 adult prospects who match me 6 of 6.

So we'll take these numbers to the docs and see where we go from here.

Graft vs Host Disease (GVHD)

Well, it's official. I have pseudo Graft vs Host Disease (pseudo GVHD). It's supposed to be temporary, but they don't know how long "temporary" really is.

So what is it? When stem cells are put back into your system, the stem cells and new bone marrow cells recognize your own body as a foreign object. In short, my new immune system is trying to kill the "invading stranger cells".

Ok, but here's where it gets a little odd. See, I used my own stem cells. The replacement immune system is MINE. The body is MINE. And yet, my immune system is trying to kill my body.

Now, before you get all freaked out, let me explain. It's not like there's a huge bio-war going on inside me. Basically, this P-GVHD is causing inflamation of my entire GI tract, a dry rash all over my face and neck (and spreading), and general lethargy. I don't want to eat, I certainly don't want to eliminate, and I leave a large white patches of skin cells everywhere I put my head.

More than anything else, it's depressing. I was feeling so good just 30 days ago. Now I feel run-down, worn-out, and the sensation that I wanna barf is perpetual. I don't eat. I sleep sporadically, and because of my hydration schedule, I have to pee every 60-90 minutes.

So now they're gonna put me on more pills. 80 mg of Prednisone (a steroid) plus two other drugs QID. Yippee! The breakfast of champions gets bigger!

So what'd we do Christmas day? We sat around and enjoyed one anothers' company. I made dinner (spiral cut glazed ham, mashies, and corn). Then I forced myself to eat some of it with Ed. No gifts, no parties. Just a nice day with my guy.

Hoo-Wee!

Stoned. STONED!

I'm 52 years old. I grew up in the late 60's, early 70's. I inhaled. (A lot.)

But I've gotta tell ya, I'd NEVER been as stoned as I was yesterday and today.

See, I took the time to advise he anethetist that I've often woken up from procedures, starting with my tonsilectomy when I was 5 to my recend endoscopy this year. I also mentioned that I might have threatened the proctologist's life during the most recent event. And so, in order to defend my sensitivites, my arrest record, and the proctologist's life, I believe she took it upon herself to "take it to the limit" with the dosage. To paraphrase: "That which does not kill me, can only make me more stoned."

Ed has awakened me before from this sort of adventure, but he claims it was considerably more difficult this time. From my standpoint, there was no direct connection between my motor/tactile skills and reality. I could reach for things and they wouldn't be where I was reaching. I would barely touch things and miss them by 1/4 inch, only to try again and miss them by a full inch next time. Trouble was, I wasn't undershooting one time and overshoothing the next.... I was undershooting progressively both times!

Eating dinner at our fave restaurant was really interesing. Ever try sucking on a straw that wasn't in your mouth? Eat a chicken wing that wasn't in your hands? Staggering in and out of a restaurant like a street person?

Anyway, I did the procedure, ate dinner, came home to sleep, and woke up this morning at 11:45 when our neighbor came over to borrow the hand mixer.

"Did I wake you up?"
"I dunno, am I awake? Am I alive?"

So regardless, I've been stumbling around the house for the last 2+ hours. Wonder if I should go for a motorcycle ride. NOT!

BTW - the tastebuds seem to be working semi-normally. No nausea.

Clinic

I went to the clinic today. Golly, it's so nice to only need to go twice a week now instead of every day!

We discussed my blood numbers and all of them seem good. I've engrafted, which means my stem cells are turning themselves back into bone marrow. Bingo, I dodged a (very rare) bullet. Kidney function is good too. Judging by the printouts, I'm as healthy as I could be at only 20 days out.

We also got the news about my brother's compatibility for transplant. Turns out he's only a 4:6 match at the preliminary level. This means he's not really suitable as a transplant donor. Our next move is to do a worldwide search through the donor database to see how many hits come back. (I'm apparently gonna be a tough match.)

Ed has decided to put himself in the worldwide database. I applaud his decision. Wouldn't it be strange if he turned out to be my match?

Food has been a problem of late. I don't wanna eat because everything tastes horrible. (HORRIBLE!) So I spent some time talking to the nutritionist this afternoon and we might have stumbled upon a solution. She mentioned that tart/sour flavors are often quite palatable by transplant patients, so I tried something when I got home. Boiled jumbo shrimp with lemon and soy sauce. It didn't exactly taste as it should have, but it tasted pretty decent. Looks like I might have a solution to my palate problem. I can do fishsticks with the same flavorings, as well as Filipino Adobo (chicken with soy sauce and vinegar + spices). I also managed to drink a 20 oz Mountain Dew because the lemon/orange flavor seemed to come out more than usual. So hooray for the nutritionist who mentioned the tart/sour link!

Tomorrow I have an endoscopy procedure at about noon. Seems they wanna look deep inside me to see if my loss of appetite has roots in illness, or if it's simply a reaction to the chemo. In any case, I have to be NPO (nothing by mouth) after midnight tonite so they can drop a scope into places I don't wanna discuss. I hear they're planning to knock me out, which will be a requirement if they're gonna do what I think they wanna do.

If there's no illness (viral or otherwise) that's affecting my appetite, they're reportedly going to give me large doses of steroids (again) to reduce the inflamation of my GI tract. This should make eating more desirable, which will be something I'll enjoy.

Anyway, I'll keep you posted.

Day 18 - New realities.

Either I died yesterday or I didn't post. Hopefully this post will clue you in on the answer to the question.

Eating is a major issue. MAJOR. I'm nauseous all the time, but I don't feel like being doped up by the anti-emetics. Here's the big problem though....... everything tastes strange, and I mean strange!

The thought of chocolate makes me turn green. Water is incredibly bitter. For comparison, take the most bitter pill in your medicine cabinet and suck on it for a while. Gatorade and Coke are acceptable. Tomato based foods are acceptable. Don't think for a minute that they taste like Gatorade, Coke or tomato based foods. They simply taste acceptable enough that I won't vomit them back up.

Lunch today consisted of one scrambled egg made with spaghetti sauce. Yeah, odd but acceptable. Dinner last night was one deboned chicken thigh cooked in Pace picante sauce. Neither of them tasted like they should have tasted, but I kept them down.

Shaving is interesting too. Basically all I have to do is rub my face/head and the hair will fall out. Only takes a couple of strokes. Rub, rub, gone. I wish it was this easy all the time.

So, what's my world like?
1) Get out of bed.
2) Take my "breakfast of champions" handfull of pills.
3) Connect myself to an antibiotic infusion that takes an hour to infuse.
4) Connect myself to a hydration infusion that takes 5.5 hours.
5) Take my afternoon pills.
6) Take my evening pills.
7) Wait 'til it's been 12 hours since starting #3 above and repeat #3.
8) Write down everything I eat or drink in the interim.

Now obviously this doesn't take into account little things like showering and changing my central line dressing. Nor does it figure the flushing of the central line in between infusions, etc. Thank goodness they've reduced my clinic schedule to twice a week now.

All this just to stay alive. Looking forward to getting this over with so I can live.

(1230)

Escape from Alcatraz

I'm out. I'm at home. I feel like a huge load is off my shoulders. Ed and I were adding it up and it seems I've spent 26 days in the hospital in 2007. Hopefully I can stay healthy enough for the next two weeks that I don't add to the total.

Retrospective

Odd. Almost exactly 15 months ago, I wrote the first entry into this blog.
http://motocancer.blogspot.com/2006/09/ok-heres-deal-with-little-history.html

Day 15 - Hospital day 11

Here's the deal. I had a rather heavy flare-up of my gout last night (this morning) at about 3am. I begged for a dose of steroids and the docs didn't quite get it. They wanted to treat the pain and I wanted to make the damned things go away. I know a dose of 'roids would dissolve the urea crystal(s) and make the problem go away. All they wanted to do was make sure I was doped up enough to not care.

I won.

Now, some 18 hours later, the gout is virtually gone. I don't have any significant pain, and I know it'll be better in the morning.

So why am I still here in the hospital? They kept me here because of the gout. They wanted to "make sure" I didn't fall down. (I honesty think it was just an excuse to keep me the extra day they originally wanted anyway.)

Regardless, I'm OUT OF HERE TOMORROW, Sunday, December 16, 2007. (If I'm not, I've either got a fever or I'll be in jail for kicking booty in a hospital.)

(1100)

Day 14 - Hospital day 10

Looks like I'll be out in 11. We're targeting for my release tomorrow.

Appetite is OK, but things taste and smell pretty odd, so that's sorta preventing me from getting back on the chuck-wagon. (Bad pun, sorry.)

There is fur EVERYWHERE. I'm worse than a shedding dog. I just hope kharma works and this stuff manages to make some cat sneeze all day.

Gonna start figuring out what to do for Christmas dinner. 11 days away!

Hair today, gone tomorrow

I sorta forgot to mention that hair is falling off my body in huge clumps. All kinds of hair. All densities. All colors. All locations.

Day 12 - Hospital day 8 of 10?

Fever has broken. Feeling better overall, even though I can bleed on demand from any orifice I choose. Might not get out in 10 days. May need 12-14.

Day 11 - Hospital day 7 of 10?

It's about 3:45 in the morning. I have a bit of energy. Maybe I'm getting better. Maybe the antibiotics are working. The tylenol is DEFINITELY working.

Don't get me wrong, I don't wanna do any salsa dancing.

Day 6 of 10?

Serious fever (102.9)

Day 5 of 10?

Still bored out of my mind. I can barely talk because of the mucositis. Heck, my lips are so dry I can't even use a straw.

Let's hope that I start to get stronger within the next 3 days.

Day 3 of 10?

Bored out of my mind. I have to save all my pee and poo so they can measure it. Still haven't eaten since Nov 28th.

Throwing up at the mere whisper of movement. Anti-barf pills knock me out.

Hospital day two

Every hour in a hospital takes 2 hours to pass. The beds SUCK.

UW Hospital

I checked into the University of Washington Hospital this morning. Vomiting blood, difficulty swallowing, no energy, general malaise. Room 7262. Don't send anything. Cancer wards are pretty secure. No food, no plants, no nothing.

Day 04

I'm officially neutropenic again. I have no immune system. We've reached an objective.

The mucositis is really starting to be a drag. It's hard to drink. Hard to take my pills. Hard to eat. The pain's not unbearable, but it's getting worse so I'm packing a hospital kit later today with the idea that I'll be headed there in a day or two.

The plumbers came by about the floor drains. They say there's really nothing they can do owing to the original design and implementation of the drainage field some 49 years ago. I believe them. They passed up a $500 ticket because they didn't think it'd be worth my money or their time. That's a sign of a good businessman in my opinion. Tell you the truth. Tell you how much it will cost to 'take a stab at it'. Tell you about the basic construction of what you're dealing with. Let you make the decision. They even offered an opinion on my plumbing drain system for the upstairs bathroom. Seems I went a bit overboard with the pipe. Apparently I used pipe that was too good and it could have been a smaller diameter. Better this way than 'too small and too cheap'.

One of Ed's lab friends is downstairs working on the Beemer. He's proven my fears - that Ed 'hydrauliced' the motor (as if hydraulic was a verb with a past tense.) Anyway, we'll have a more detailed analysis later.

Meanwhile, I'm tired and wanna go to sleep.

Yesterday SUCKED!

Ok, we'll ignore the part about me feeling lousy. We'll pretend I was 100% healthy and feeling good. Yesterday still sucked.

We awoke to an inch and a half (38mm) of water on the ground floor of the house. That might not sound too bad, but that's a little deeper than the carpeting downstairs. It'll all have to come out.

Right now I'm waiting for the plumber who is at least 1.5 hours late. The flooding was caused by some floor drains that "didn't". Seems all the rain went under the back door instead of down the piping to the lake.

And then...... and then.....

And then Ed decided to drive his car to work. Trouble was, he sorta forgot to pay attention to the 18 inches of water across the road about a mile from the house.

Just FYI, a BMW 740i has an air pickup right behind the passenger side headlight. Apparently that headlight went under water at some point in Ed's excursion. Yup. The motor sucked pure ditch water right into the intake.

He locked the motor hydraulically. Water is not compressible. For those of you without a ton of mechanical savvy, he "broke it big time".

Of course, there is no insurance that covers "I drove it into a foot and a half of water".

Any of you want to buy a BMW 740i Sedan in good shape other than the motor? (I was actually looking forward to making the car reach 'vintage' status in concours condition, but alas....).

So that was yesterday.

Day 03

Miserable weather. Wet, wet, and more wet. Downstairs had an inch of standing water.

Went to the SCCA, did the usual tests and talked to the usual suspects. No significant change.

Day 02

Slushy weather.

Slush falling from the sky, staying slush on the ground. Yeah, I wanna go traipsing off to the doctor in weather like this. It's cold, wet, and I'm feeling pukey.

Don't misunderstand. I'm not feeling 'bad'...... I'm feeling pukey. I guess pukey is sorta bad.

I got up, took my shower, jumped in the pickup and slushed my way to the SCCA. There was no line for the blood draw so that took about 7 microseconds. Ed and I dragged ourselves upstairs for the checkup and waited about 10 minutes for a room.

Once in the room, my breakfast reappeared. Fortunately it had only consisted of my morning pills and water. It appeared several times until it was no longer able to appear.

Pills don't taste very good when you put them in your mouth. They taste even worse on the return trip.

Regardless, much of our visit was spent on prevention of this sort of misadventure. I now have 4 different types of anti-nausea pills. I take a different type every 2 hours. I'm only conscious long enough to pee and take a fresh dose of pills.

"Say 'Good Night', Gracie!"
"Good night, Gracie!"

Stinky!

I smell like DMSO today. It's the preservative (antifreeze) that stem cells are stored in before transfusion. It stinks. I stink.

Some people say it smells like creamed corn. Some people say it smells like garlic. Some people say it smells like DMSO. I'm in the latter camp. It's just sort of a chemical-esque fragrance with subtle hints of creamed corn and garlic. "Eau do DMSO". Or maybe "DMS Eau".

I can see the marketing campaign now:

"Smell like the stereotypical Frenchman with DMS Eau."
"Increase your intrapersonal space with DMS Eau."

I'm thinking we can put these ads on the sides of busses. Nothing like a little waft of diesel to go along with your DMS Eau!

Anyway, the other side of the DMSO thing is that it makes my sense of smell COMPLETELY upside-down. Ed made pancakes this morning. I thought he was burning truck tires in the kitchen.

Basically everything stinks, including me. My nose is having a wonderful day.

Birthday

I got my stem cells today. I guess it's supposed to be my new birthday.

The whole process was severely underwhelming. Hydrate for 2 hours, then hook up, infuse for 36 minutes, disconnect. Get 2 more hours of hydration.

Anti-nausea pills make a guy sleepy. I tried to eat after Ed came home. I got about 3 bites down and fell asleep typing this blog. Gonna go back to bed.

Everything is OK.

36 hours in

I haven't eaten much. I've limited myself to fluids, canned meal substitutes (Ensure type products), and water. The idea of real food turns me green.

I had a canned meal substitute, a small container of apple sauce, a bottled water, and one bite of a pig-in-a-blanket for dinner. It took me 3 hours to eat it.

At about 9 pm I went to the bathroom and felt a wave of nausea...... with violent results.

The odd thing was that I'd felt just fine until I relaxed a couple of muscles to pee, then all hell broke loose. Sudden nausea with instantaneous projectile vomiting. It looked like a horror movie. I was fine (and quite empty) about a minute later.

They tell me I shouldn't be this queazy yet. They say I shouldn't be this bad until about the 5th or 6th day. They also tell me they'll have to hospitalize me if I can't get any nutrition.

BTW - I'm taking anti-barf pills.

24 hours in

I feel like warmed-over manure. I'm operating under my own power but doubt I'll be able to do so for very much longer. I don't think the giant hand has swung the hammer yet. I'm afraid he's just pinching too hard as he steadies me for the giant whack.

I have to be at the SCCA in an hour and a half.

12 hours in

Tired. Feeling lousy. Wanna barf. Going back to bed.

8 hours in

Tired, feeling like I'm coming down with something. (Not that I am, but I feel like it.)

Drinking water - just plain water. Imagine that!

The anti-barf pills seem to be working. Going back to bed.

4 hours in

I'm 4 hours in. I just had lunch and it's not settling perfectly. I have pills for nausea that are supposed to be taken at 12 and 24 hours post poison.

Still pretty stoned from the ativan. I was having a good nap until Verizon Wireless decided to text me to let me know my bill was available online.

I think today is a lost day for a lost boy. Maybe I'll try to read.

The point of no return.

I've past the point of no return. The poison is in me and there's no way to reverse it. The deed is done.

Bone marrow death started about an hour ago.

I'm so stoned on ativan I can hardly type. Gonna take a nap. Talk to you later.

Petrified.

Batman is scared. Very scared.

At 8:00 am tomorrow, a giant hand will hold me against the mud of an unknown swamp. With one giant blow, he'll hammer me into the ooze below my feet. Then I'll be hammered and hammered again despite the fact that my head is already below the surface.

Hopefully the giant hand will grow tired of this in a few days and let me eke my way out of the ooze.

Ed and I have talked about this: I'm not afraid of death, but I'm scared as hell of suffering on my way there. Tomorrow starts the suffering with the intent of avoiding death.

The truth is that I really don't want to do this. Conversely, I really want to be cured (or at least asymptomatic for some time), and we hope this will have some beneficial effects. I'll endure the suffering in pursuit of a greater goal. I just wish there was another way.

For you medi-technophiles out there, I get a massive dose of Melphalan tomorrow. It will cause ALL of my bone marrow to die. I'll be neutropenic (no immune system) for much longer than I was during a previous dose. It will cause side effects that put 90+% of patients in the hospital for 14 to 21 days. I'll have severe inflamation of mucous membranes. (Figure out where those are, and imagine stunning inflammations. Yup, eyelids and everything from your lips to your anus.) Unimaginable inflammation.

I'll have such poor blood numbers that I'll probably get several transfusions. We already have a couple of them planned.

I'll be so weak they'll worry about my ability to dial 911 or call Ed. As a result, they want Ed by my side 24/7. At the same time, they want me to come see them once a day, every day for 30+ days. Maybe the hospital would be a blessing.

It gets worse, but I won't bother with that here.

I'm scared. I really am.

In the meantime, I'll blog until I can't blog any more. Heck, it's time for more Christmas card pics!

Your daily fix.

Apparently some people get tweaked when I don't post something for a day or two. Either they're really concerned about me or they need a daily installment of their favorite soap opera, "The Days of our Cells". (Seriously, I appreciate that some of you worry if you don't hear anything from me.)

Odd segue begins here:

I was going to use the title "Make no bones about it" as the soap opera name in the sentence above. Then I got to thinking about what the expression really means.

Well, it apparently means to: 1) state all the facts and leave no doubt. 2) have no hesitation or scruples in speaking about or dealing with some matter, no matter how awkward or unpleasant.

Now, I was originally going to use the expression because of multiple myeloma's severe and debilitating effect on the skeleton. It was going to be my little play on words for the day. Turns out it's a bit more than that. Call it my big play on words for the day.

Are you starting to see a peculiar parallel between multiple myeloma and my method of coping with it in this blog?

Suddenly I feel empowered, as if I own "Make no bones about it". I mean, if MM is destroying my bones, and I'm not making any bones about it destroying my bones....... Well, you understand.

End of odd segue. Resumption of normal thought processes:

The job interview turned out to be a waste of time. I was completely candid with them regarding my health and situation, as well as my expectations for recovery and what I could do for them (and when). They opted to skip the opportunity to hire someone they considered a rare find. In any case, it was good to be reminded I have marketable skills, that I have some commercial value, and that my skillset is unique.

I've been feeling better than I've felt in 18 months. Life has probably been better than this, but I've forgotten when. Of course, this makes it the perfect time for them to hammer me into the bottom of the swamp (which will happen this Wednesday, November 28, 2007).

I spent the day taking care of some minor issues at the SCCA, yelling at some hospital accounting departments where the people are polite but clueless, ordering drugs and medical supplies, and alternating between slight mania and abject fear of the next two weeks.

In 15 minutes I'm going to sneak off to our local Thai restaurant with Ed. They make some incredible fried chicken wings. The Colonel and Popeye could learn a thing or two from the Thais. (The place is called "Thai One On". Yeah, hokey.)

Oh, by the way.....

I sorta forgot to talk about the bone marrow biopsy that happened this past Wednesday. Remember, that's the old "let's put a couple of holes in your hip bones and suck out the juice" pleasantry I'm so fond of.

Well, it went EXACTLY as I wanted it to go. I went in. I took drugs. I walked out with Ed and we went home.

This is how bone marrow biopsies should happen. I'll do it again.

Oh, speaking of drugs. The docs have me on Fentanyl for pain nowdays. What a wonderful drug. No high and no pain. The perfect combination. I actually feel like a person's supposed to feel. No buzz and no misery.

It's really amazing how much pain I endured every day. It's only recognizable now that it's gone. I had grown so used-to the background pain that it became my new norm. I'm SO glad it's gone.

I've actually been waking up in a good mood every morning since starting the Fentanyl. (So good, in fact, that it's been irritating to Ed. He likes to wake up slowly and I've been a bit like Little Mary Sunshine.)

24 hour wee-wee

I have to collect my urine for 24 hours again. Take my word for it, the concept thrills you as much as it thrills me.

I was supposed to start yesterday and finish this morning, but I forgot. (Maybe it was just a mental block.) I guess I need to reschedule the blood test that's supposed to go along with it at "adventure's end".

It's a wonderful little drill:
1) Remove lovely brown 1/2 gallon container from fridge.
2) Open said container.
3) Dangle my little friend into the cold container.
4) Pee.
5) Shake my little friend against the sides of the cold container.
6) Remove my little friend from (freshly warmed / stinky) container.
7) Shake my little friend again.
8) Put my little friend away where he belongs and make sure he's comfortable.
9) Put the top on the stinky-tainer.
10) Put the stinky-tainer back into the fridge.
11) Repeat 1-10 as necessary until 24 hours have passed, then
12) Disguise stinky-tainer as your bag lunch to protect innocent onlookers.
13) Carry stinky-tainer across town. (If public transportation is being used, sit next to an obviously homeless person. This will make most people think the smell is coming from him.)
14) Give to an eager looking lab technician.
15) Smile pleasantly, then turn and run like hell.
16) Go get a blood test.
17) Try not to look at the urine collection technician as you leave the building.

Thanksgiving day.

For those of you who are non-US readers, today is Thanksgiving Day. It's a holiday we celebrate in honor of the bounty provided us.

Usually, this holiday is celebrated with family and food. Most times it involves overindulgence, football on TV, and tall stories from distant uncles. This would be considered a "traditional" Thanksgiving.

In our house, since Ed's not a US citizen, and since I really don't care much about family, Thanksgiving is sometimes spent with friends and sometimes spent alone. This year, we were worse than usual.

I was in Vancouver, Canada being interviewed for a job. Ed played video games at home alone. After I came home, I microwaved some chicken and made some instant mashed potatoes. Some people will think this is horrible, but I think they're missing the point.

We're thankful we have the flexibility to do what we feel like doing. We're thankful we love and trust one another enough to change directions on short notice without disappointment. We're thankful that a microwaved dinner together is worth more than a gourmet meal apart. We're thankful that we're slaying our dragon together. We're thankful we found one another at the perfect place and time. We're thankful it works.

We hope each of you is as lucky as we.

The daily news

Ed and I went to the scheduled conference today. Unfortunately the blood test area was SO backed up we waited an hour and two minutes from check-in time to completion, so we were a bit late for conference. We got our calendar/schedule and we got the doc to agree to allow my brother to be HLA typed. (Big step.)

Tomorrow is another bone marrow sample/biopsy. I'm gonna be knocked out completely for this one. I don't really care if it makes me seem like a wimp...... I don't wanna be here for this one......

The current schedule has me getting Melphalan (bone marrow poison) on the 28th and my transplant on the 30th. Engraftment (acceptance and regrowth of my stem cells) should occur within 14 days (24 at the most). Yeah, that would stretch right up 'til Christmas eve.

(For those "in the know", some Canadians are pestering me to come visit them. I'm actually scheduled to go up there on Thanksgiving Thursday.)

Last night and today.

My gout flared up yesterday. I woke up with joint pain in my left hip, both kness, and both ankles. I was virtually crippled by 9 pm.

This morning I woke up at ~5 am because I had to pee. I found that I could walk gingerly to the bathroom, but the pain never let me get back to sleep. I got up and did my regimen and headed off to the SCCA at 6:45 for my 7:30 blood test.

I got a gammaglobulin infusion and a pamidronate infusion today. I left the SCCA at 2:45. No side effects, no serious reactions. One of the meds they gave me as prophylaxis against an adverse reaction to the gammaglobulin was successful in treating my gout. Yippee.

They gave me a pain script for Fentanyl in a patch. The patch lasts 3 days. We'll see how well it works.

The daily grind

I'm doing this simply for documentation. It might interest some of you to know what the basic overhead is for me every day.

1) Get out of bed.
2) Eat the "breakfast of champions" (a small handful of pills).
3) Start the shower
4) Remove my 'required' T-shirt. (keeps the Hickman catheter from being pulled out)
5) Remove the dressing over my Hickman catheter.
6) Cover my Hickman with a "Showerguard" plastic sheet (supposedly keeps the Hickman dry)
7) Shower, shave, and brush my teeth with 2 different types of toothpaste and 3 different tooth brushes. (really!)
8) Turn off the shower and dry off with a new towel every day (required).
9) Remove the "Showerguard" and dry the area under it. (not really waterproof)
10) Open a pre-packaged dressing kit.
11) Sterilize the area around the Hickman and under the Showerguard location starting from the Hickman entry point and working outward.
12) Place two gauze pads on the Hickman entry point (one under and one over the line).
13) Tape these gauze pads to my chest using alternating tape patterns so my skin doesn't disintigrate over time.
14) Remove my infusion (hydration) bag from the refrigerator.
15) Warm the bag under hot running water for 10-15 minutes.
16) Program the infusion pump.
17) Place the warmed infusion bag in the backpack.
18) Install a pre-packaged tubing kit on the hydration bag.
19) Prime the line(s) of the tubing kit (including clearing bubbles from the lines).
20) Put a new battery in the infusion pump.
21) Program the infusion pump.
22) Connect the primed tubing to my Hickman catheter after cleaning the tip with alcohol.
23) Connect the pump body of the tubing kit to the pump.
24) Finish programming the pump.
25) Check everything and start the pump.
26) Carry "Wheezy" around for 4 hours.
27) Undo the tubing (disconnect).
28) Clear both lines of the Hickman catheter with a saline flush followed by a heparin flush.
29) Resume my day.

I've been asked why I don't combine #7 and #15 by warming the bag in the shower. The simple answer is that the ports of the bag need to stay clean and dry. It's not practical in the shower.

Return of the prodigal.....

Ok, I'm back. I went to Dallas for a few days to get some things out of the way. I spent a bit of time with my brother and his hubby, some with my motorcycle posse at the TSBA, some with TSBA members who are closer than average, and had one dinner with my mom, sister, and niece. The whole trip was quite nice. Only about 3 hours of it sucked, so I consider it a 'good thing'. I slew some dragons and got some badly needed rest in the process.

Ed and I gave a pretty nice digital camera package to our niece. I hope she puts it to good use.

Anyway, I'm returning my seatback to its full upright position. My tray table is locked.

I'm unable to take your call at this time.

Well, I'm done for this week. Nothing going on. The SCCA has me off next week completely. Until November 19, you won't be reading anything from me unless something odd happens.

"I'm sorry. I'm unable to take your phone call at this time. Please leave a message and I'll get back to you as soon as I can."

New birthday.

It's common for transplant patients to label their transplant day as their "second birthday". Apparently mine will be November 29th. This caused me to have a funny thought.

What if the astrological sign for my new birthday (Sagittarius) isn't compatible with my regular birthday (Gemini)?

Don't misunderstand. I'm not a follower of astrology. I was just curious in a "wouldn't it be funny" sort of way.

Well, it turns out that my Sagittarius and my Gemini sides will get along just fine as long as we don't become emotionally involved. (Yeah, there are a lot of different ways to consider that.)

Truth is, I'm not schizophrenic enough to worry about it.

Vacation!

I went to the SCCA today to get my usual blood test. I also made plans with them to go on vacation. I've had this miserable "job" for about 14 months without a day off, so I'm gonna spend 4 days back in Dallas next week.

There are a couple of tests they wanted, but they'll wait until I get back.

The plan?

I touched base with my team this morning after my blood draw. It seems that the schedule looks like I'll be getting melphalan on Nov 27 and will get the transplant on Nov 29.

I have a consultation on Friday, so I'll keep you all posted.

A productive day.

I started my day at the SCCA at 9:00 am with a blood test. It was followed by a platelet transfusion and a "G" shot.

Then came the surprise. I was told at 11:30 that my noon apheresis (harvest) had been cancelled. I went NUTS! WTF? So I went to my "team" and asked a few questions. Turned out that somebody knocked me off the list by accident, and that I was back on schedule. I'm glad I raised a little hell. What do passive patients do?

Anyway, apheresis happened as it was supposed to. It was followed by 2 units of blood (again), making something like 9 units of blood since this thing started.

I got finished at 7:00 pm this evening. Ten hours of being a patient patient. (Well, not always patient, but always a patient.)

So do you wanna hear the good news? The SCCA apparently has two different sizes of apheresis collections. One is obviously smaller than the other. They did the little one on me today so they could do another little one tomorrow. See, my hematocrit was 29 and they require a 30, so they were gonna fudge a little and do it in two sittings. They knew my late-day blood transfusions would get the number over 30.

Anyway, they wanted to do the apheresis in two parts because they need to collect at least 10 million stem cells and it usually takes two 'smalls' to get 10 million.

One side note: My doc suggested that the melphalan treatment I got before the "G" shots might reduce the number of stem cells to 6 million (maybe). She just wanted me to be prepared for only collecting enough cells for one auto transplant.

Well, the end of the day turned out to be quite good. Tests showed I produced (and they collected) 10.6 million cells from a 'small' apheresis.

Yes, that's a stunning result. No more apheresis. No more "G" injections. I have a blood test tomorrow at 9 am. It's the only thing on my schedule.

I'm relieved.

THE call.

I just got THE call. Turns out my CD34 count is 35 and they're only looking for 10, so I get harvested tomorrow at noon!

I'm pretty emotional right now.

A call.

Well, I got a call, but it wasn't THE call. To be honest, this call sorta pissed me off.

It seems they won't do a harvest unless my platelets are above 50. Yesterday they were 28. Today they're 18. Why the hell didn't they schedule a platelet transfusion for today along with the RBCs?

So, tomorrow at 9:30, I get platelets and another pair of "G" shots.
Whoop-de-freaking-do.

Do I sound anxious?

Another Monday rolls around.

The SCCA started at 10:45 today - blood tests including a bunch of odd ones like a CD34 test and a test to see if myeloma cells are coursing through my bloodstream.

Then there was the usual "G" shots and vitals, with the usual questions. You know, "Have you died within the last 24 hours?", "Has there been any unusual bleeding since we thinned your blood so far that it looks like water?", and "Do you feel dizzy when you stand up?".

Now, these may seem like inane questions, but I dilligently answer every one. So in case you're curious, here are my responses.

"Not that I'm aware of. Is there something you need to tell me?"
"Just the bloody eye and the Petechia. Besides that there have been no gushers."
"Not any more than I am the rest of the time."
Nobody ever asks how dizzy I am the rest of the time.

Anyway, I'm back at home, hooked up to my little black girlfriend "Wheezy" for a nice liter of fluids. Waiting for the phone call that drops another shoe. Will it be the right shoe, or the wrong shoe?

I'll let you know.

Transfusion on Monday

I just went to the SCCA for a late-afternoon blood typing. Now I know I get 1 unit of blood tomorrow at noon. Gotta bring something to do. 4 hours in the chair.

Return engagement

Gotta go back to the SCCA today. They need to type my blood. Even though it's been done before, there's some sort of regulation that the typing has to be done within 3 days of a transfusion.

Home again, home again, jiggity-jig

Back from the SCCA again. Good news!

WBC count was 0.4 yesterday and it's 1.37 today! Basically this means I'm coming out of neutropenia rapidly. The nurse (who spoke with the oncologist) said they'd be looking at tomorrow's numbers and might be calling me in the afternoon for a Tuesday harvest!

I also bumped into the oncologist in the hall and she confirmed this, but also advised they'd be ensuring that there were no "bad cells" in the blood. I take this to mean that there should be no circulating myeloma cells in the blood, as there have been in the past.

So, I might get my callback tomorrow! Cool!

Petechia

Yeah, it's 1:00 am and I've been up watching TV. Bad boy.

But here's the news. I took off my pants and shirt with the lights on. I have petechia (pronounced pet eek ee ah) all over my body.

What are they? They're tiny little blood vessel hemorrhages everywhere on my skin (primarily on the legs due to the increased pressure of gravity). They're caused by my low blood counts. Basically, if there aren't enough red blood cells in your blood, you spontaneously bleed. Add the petechia to the bloody eye, and my counts are probably about as low as they'll let me go without a transfusion. We'll see tomorrow at my appointment at 8:30 am.

Will advise.

Saturday

The usual blood tests and "G" shots.

Most of the numbers haven't changed significantly, but the WBC count dropped about 25% meaning that my marrow hasn't started to grow back yet. Basically this means I'm not gonna get the call for harvest any time really soon.

New schedule

Back again. Blood numbers remain neutropenic. Hematocrit is 29 and that's below their minimum level for harvest. Thus, we suspect that I'll be getting another transfusion immediately before harvest.

The schedule has me on "G" every day until next Thursday. However, I've been advised that when the numbers are right, they'll just pull the trigger and schedule me for harvest the next day.

So, I could stay on "G" until Thursday or I could get my "summons" tomorrow. Who knows!

(I've been warned that the transfusion and the harvest can take up to 10 hours. I'm supposed to bring 'something to do'.)

November 1 report

Just got back from the SCCA again. Blood draw, blood counts, "G" injections. Pretty normal day. Same routine tomorrow. Counts are continuing downward. Immune system is even less than yesterday.

They're busting my hump about my fluid intake. I get to keep records now.