Thursday, January 31, 2008

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.

Wednesday, January 30, 2008

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.

Monday, January 28, 2008


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.


Friday, January 25, 2008

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.


Wednesday, January 23, 2008

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.

Tuesday, January 22, 2008

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.)

Monday, January 21, 2008

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".

Wednesday, January 16, 2008


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.

Sunday, January 13, 2008

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.


Thursday, January 10, 2008

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?

Wednesday, January 09, 2008

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.

Tuesday, January 08, 2008

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.

Monday, January 07, 2008


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.

Saturday, January 05, 2008

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:

Made me cry.

Friday, January 04, 2008

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.

Thursday, January 03, 2008

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?

Wednesday, January 02, 2008

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.