....and counting toward the future.

I just had an email exchange with an old friend. I thought a few things in the email might be relevant here. Here's the tally.

"To be honest, staying ahead of the cancer game is a task..... a duty if you will. I have my alarm set at 7am so I can start my first round of meds. Then I have another round at 9am. Sometime around there I need to start two infusions (1.25 liters of fluid piped directly into my bloodstream via a central venous catheter [Hickman]). Then I have more meds at 3, more at 6, another infusion of 250 ml, and my last round of drugs at 11pm.

Some of the drugs prevent me from eating dairy during a 3 hour period (3 times a day). Some should be taken on an empty stomach. Some should be taken with food. Some make me absolutely staggering drunk. Some raise my BP. Some lower my BP so the drugs that raise it don't kill me. Another is a topical steroid for my GI that I eat on a cookie 4 times a day.

I just counted. I take 38 individual pills, 4 cookies, 3 infusions, and two topical ointments a day. Every day. That number increases if I take anything for pain. Generally I don't, but sometimes a couple of Tylenol come in handy.

I really try not to complain. I feel pretty decent in general and my condition has improved since the most recent transplant. I'm getting things done and I'm taking care of a couple of those creative projects you know I enjoy. I'm also working on the 2WheelTiger.com site for the near future. If I haven't told you about 2WheelTiger, it's going to be a travel and adventure site based upon what's going on with yours truly. The objective is to get people to live before they die. It'll be a contribution/donation site. I have a developer working on it as we speak. So I guess what I'm saying is that I'm not giving up. I'm actually looking forward to the future and making plans.

Thanks for your concern. It means a lot to me."

Anyway, I thought I'd share.

Tuesday's 10+ hour day.

Yesterday I had my usual Tuesday appointments at the SCCA. Little did I know how it would turn out.

I arrived at 9a for my blood draw. I think it was only 8 vials this time. Then I went upstairs to have a meeting with Nutrition. There's been no change in my GI since Friday. Hmmmmm... time for more tests, including the threat of renewed spelunking from each end. Fortunately the spelunkers declined. Then came time for the ID doctor to poke her head in. She said I was probably doing fine from her side, but that we needed to decide whether I have GVHD or CMV (or both). She wanted some tests too. You know the tests. They're the ones you do privately. Nobody wants to help you. You're on your own, fella!

And then it was time to meet with the team. Would we decrease the steroids? Would we increase them? Decision: Do nothing. Keep them where they are and we'll see you on Friday.

Then came the shocker. "Your hematocrit is only 25. When would you like your transfusion? Today or tomorrow?" I chose "today" (Tuesday). Let's finish this little fiasco in one move. Don't drag it out.

So I went downstairs to get another blood test, a type and cross, to see if my blood type was the same as it used to be. It was. O+

At 3p, they hooked me up. At 7:15p, they disconnected me and let me go home. Two units of whole blood.

I was grouchy for some reason. I've been slightly tired all day. Hopefully tomorrow will be a bit more productive now that I have some red blood cells again.

I guess it's been a week again.

My friend PS sent me an email indicating I'd been lax again with my postings. I hadn't realized until this very minute that it's been a week. Wow, time flies when you're having fun!

I'm back on a regular schedule at the SCCA. Tuesdays and Fridays are the norm. Drugs get changed every couple of days because they make some determination based on the blood counts. Some drugs go up, some go down. The total load is still pretty big, but the type of drugs changes. Basically they're trying to lessen the load on the kidneys.

The good news on Friday was that my kidney function numbers are in the normal range. We're staying ahead of potential kidney damage.

The bad news Friday was that if my GVHD symptoms continue, they're going to increase my steroid load to 80mg per day from 40mg/day. Not looking forward to that.

A dietitian's analysis suggests that some of my lower GI troubles are caused by the inability of my small intestine to absorb fats. This puts undigested fats into my large intestine, and the result is, shall I say, "often urgent". And so, I'm supposed to change my diet toward extremely lean proteins and completely away from spicy foods.

Fish, flank steak, extremely lean pork, beans. Yup, nothing quite like Fajitas with no seasoning, no onions, no peppers. Might as well be beef jerky in the Twilight Zone. I had Pho with meatball and rare beef today. I added no mint, bean sprouts, peppers, or cilantro. 30 minutes after my meal, I was DYING. There was an emergency going on under my belt. Code 3. We actually stopped at the local hospital so I could resolve the problem.

On a separate subject, it looks like I'll never get to meet "George" and his son. When I had my Friday appointment, I rounded the corner and there they were, being congratulated by the staff on their departure from the program. Seems "George" has had a successful run at the SCCA. Congratulations to him! (The son was holding the egg when I passed. I made comment about it and gave them both the thumbs-up.)

I learned a lesson about missed opportunities. I shouldn't let that happen again.

Overall, my energy level has been pretty good. I've been doing a few small modification projects on the motorcycle. They exercise the brain, make my body move in untypical ways, and give me some sense of accomplishment. I take the projects slowly, don't lift any heavy weights, and enjoy myself 3-4 hours every day in the garage.

I call it progress. Getting back to my #1 hobby is good for me.

The complaints are becoming more frequent.

Apparently I don't blog often enough. I'm getting complaints. Well, maybe they're not really complaints, but they're questions. "How are you doing? You haven't blogged in a long time!"

And so, here's the latest.

As of this morning, the load on my kidneys has been significantly reduced. We can rule out the risk of serious kidney damage for the time being.

My energy levels are at a pretty low level. Muscular strength is poor.

Blood pressure is good. Pulse is good.

Upper and lower GI issues are significantly reduced. I'm eating quite a bit and have actually picked up one kilo this week. Unfortunately the weight gain has been limited to the single kilo.

Steroids have been typical. I have peripheral edema (fat ankles and knees). Appetite is good, but taste and smell are still abominable.

I don't sleep well unless the room is over 80F (26.6C). I get muscular cramps in my feet, legs, and hands.

BUT, I'm doing better than I was last week and this gives me hope. At least I'm not going backward. It's not easy, but I'm moving forward.

Change your partner, do-si-do!

For my British fans, the title is a reference to a square dancing instruction.

The SCCA did a blood test on me this morning to track what they feared from Tuesday. The results are quite simple. My kidneys are overloaded. This can lead to kidney failure, dialysis, death. Not cool.

So they've increased my hydration to 1.5 liters/day. Yipee, 6 hours on the pump every day. They've changed me to Gancyclovir instead of Acyclovir (deliverable in another hour long infusion.) They've reduced some of my other drugs by 50% and they've eliminated others completely for the short-term.

Meanwhile, I've been awake for 36 hours because of the steroid changes from Tuesday. I know my body and brain will settle on this new norm, but it's always a little slice of hell when I'm thrown onto high dose 'roids.

Do I feel like crap? You can bet money on it. It's just highly excitable crap.

A visit to "the office".

I spent this morning visiting the SCCA folk again. Since I had a rough weekend (GI bloating and pain), they changed my meds. Prednisone steroids have gone from 10mg to 40mg per day. I expect my dearly departed great grandmother to take up ethereal residence in my ankles again.

But this was one of the days I noticed the cyclic nature of the cancer beast as it relates to human interaction. Because people prefer to be seen at a particular time of day, and because of scheduling requirements at the SCCA, waiting rooms tend to be filled with the same people week after week. I see the same faces and nod the usual nods on Tuesdays and Fridays. Funny thing is, I've never talked to any of them. Most of them only talk about their cancer, and that's not my cuppa when I meet a new person.

But I'll tell you some stories about the people I know: Obviously no real names.

"R" is the unabashedly gay phlebotomist who makes a special effort to get me as his patient. We talk about his boyfriend and his plans for the next year. Somehow, it makes the blood-letting more enjoyable.

"G" is my team nurse. She's one of those people who always has a good attitude. I like her.

And then, there are the patients: (Who I've never spoken to, but I listen a lot.)

There's the gaunt young lady with circulatory problems. Her hands turn dark when she stands, and those are her good days. She's probably 17-20 years old. I wish her luck and a speedy recovery.

There are all manner of "old folk" like me. Husband and wife teams who deal with "the job" in whichever way they can. 99% of these people have a positive attitude about their recovery and I think most of them have accepted their extra time as a gift.

And then there's a guy I'll call George. George is a character, and I mean a character in the literal sense. See, George wears cowboy clothes. George wears a denim jacket, denim pants, suitable shirt, and a straw cowboy hat that's a virtual caricature of a farmer's straw hat. George also carries around a large (18" high) golden egg. Yup. You read that right. A large golden egg. The egg has a hole in the bottom so he can stick his thumb in it to carry it with one hand. George even wears a single gardening glove to carry the egg so the gold paint doesn't get on his skin.

But George also wears comfortable Seattle-esque shoes. Klog looking things, shoes for ex-hippies. He's always accompanied by his son, a tall, good looking young man of mixed race. Judging by their vocabulary and speech patterns, both of them are well educated. Obviously, George isn't a chicken farmer, egg farmer, or even a post modernist bok choi farmer. He's an educated, liberal minded man with an alter-ego.

George has assumed a character. I've never seen George when he wasn't in farmer drag. The funny thing is, he seems to know LOTS of patients in the center. I guess his get-up has the same effect as my tiger ears. It makes people smile. It makes them start conversations.

Bravo George.

Graft vs Host Disease (GVHD)Graft vs Tumor (GVT)

At the request of a reader, I'm going to discuss Graft vs Host Disease (GVHD) and Graft vs Tumor (GVT) as they relate to allogeneic or mini-allo transplants. This is gonna be pretty dry. It's pretty difficult to be witty on these subjects.

I guess the first step is going to be defining what the words mean.

GRAFT - The graft is the stem cells I got from the donor.
HOST - The host is the patient. In this case, me.
TUMOR - The tumor is the cancer cells in our bone marrow.

Now that the definitions are clear, allow me to go back over the procedure(s) that lead to a mini-allo:

1) My bone marrow was ablated (significantly reduced) by chemotherapy and total body irradiation (TBI). This had the net effect of killing an estimated 90% of my bone marrow cells. (An autologous transplant kills 100% of the cells.)

2) Prior to #1 above, a kind volunteer went thru considerable discomfort to create a bunch of excess bone marrow stem cells. This graft was collected and shipped to my hospital.

3) The donor cells (the graft) were infused into my bloodstream.

4) The donor cells eventually engrafted, meaning that they began to grow and reproduce inside my bones. In other words, they took up residence in my body. As of my last test, 100% of the cells in my marrow belong to the donor. There are no "Andre cells" left in the marrow. (Note that this is 30 days into the process and I'm far from the end of the 120 day observation period.)

Now, I hope it's clear that the whole purpose of this is to make the donor cells combat the tumor(s). The donor cells are supposed to find the myeloma cells and kill them. The donor cells do this by recognizing the myeloma cells as foreign cells and launching one of many "kill" methods. (I asked Ed and the actual biology is pretty complex and not really relevant.)

When the graft kills the tumor, you have GVT with a positive outcome. GVT - Graft vs Tumor. It's the objective and a good thing.

But GVT and GVHD are a bit like love and marriage. "You can't have one without the other."

If the graft (donated cells) are able to recognize the myeloma cells as foreign, they'll also recognize every cell in my body as foreign! The same graft that is killing the tumors is also trying to kill me as if I were a giant infection it stumbled across. This is the nature of Graft vs Host Disease (GVHD).

In order to get the GVT we want, we have to accept there will be some GVHD.

Common symptoms of GVHD tend to appear first in the more sensitive parts of the body. This would be the upper and lower GI tract, the eyes, and the skin.

GVHD is managed by three major drugs. MMF (mycophenolate mofetil or CellCept), tacrolimus or cyclosporine, and steroids. These three drugs fall into the category of anti-rejection drugs and their purpose is to prevent the host from rejecting the graft, and prevent the graft from attacking the host.

Yes, I have GVHD and it's manageable. Will it remain so? We don't know, because while 100% of the cells in my marrow are the donors, this is not the case in my bloodstream yet. It takes some time for my cells to die of old age and be replaced with the donor cells. It's entirely possible that, as the quantity of graft cells increases and the host cells decrease, the attack on my body will increase.

On the other hand, the ultimate objective is to use the anti-rejection drugs to buy enough time for the graft and the host to learn to live with one another (immune tolerance). There are LOTS of mini-allo patients who have been alive for years after their transplant. Eventually, the GVHD seems to get easier.

So it's been a while

My brother called me today and mentioned I hadn't blogged in a while. His assumption was that everything must be going well because it's my habit to be quiet unless I have something to whine about.

He's right.

First things first. My brother's an actor along the same lines as I was a motorcycle racer. Loyal, convicted, dedicated, but not professional. In the pyramid of pass times, Rick and I are on the lower levels. We stand far from the peak.

But things seem to be changing recently. Seems he has to be in Austin, TX tomorrow morning. His driver will pick him up and deliver him to make-up and costuming. For two days he'll be shooting an HBO movie with Claire Danes.

I'm proud of him. Years of hard work and dedication are starting to pay off. Bravo!


But back to the subject at hand: How am I doing? I'm still losing a kilo every week. I get full easily. I don't like the taste of anything I put in my mouth. I don't like the GI discomfort brought on by food in my system, and I certainly don't enjoy the end result of digestion when it's all said and done.

In the real world, I'm getting worse every day, one millimeter at a time.

See, I'm being weened of the drugs that make me feel good. The intention is to allow my body to produce normal adrenaline and endorphines so I feel genuinely normal. The trouble is that the GVHD (Graft vs Host Disease) is creeping forward daily, so every centimeter I move forward and away from the drugs, the GVHD takes away.

Side effects of the changes come mainly in the form of nocturnal muscle cramps in my feet and shins. My hands cramp too.

On the other hand, I look good. I look healthy. Most people tell me I don't look like a cancer patient. I take that to mean I'm progressing as well as can be expected.

Side Note: Ed had a seminar in Seattle most of last week. He spent 6 days with me, went to Vancouver for two days and is now back in Seattle. Monday is Canadian Thanksgiving. We've been together 10 out of 12 days.

SCCA Team Visit

I went to my usual Tuesday meeting at the SCCA today. Apparently I'm doing well enough that they'll probably put me on a once per week schedule soon. Very little to report other than I'm still developing the "new normal", whatever that may be.

Today was bright and sunny. It's amazing how good I feel on days like this when compared to the average Seattle day.

Monday night

Ed's attending a seminar in Seattle this week, so we've been spending a lot of time together. It's rather like being a real couple again.

The steroid taper has left me in the doldrums. Energy levels are sub-par and general malaise is up. I'm trying to get used to another "new normal".

Basically everything is OK here.

Interesting

My brother sent me this link. It's worth a read.

A bit of pain

Today was the penultimate step in my prednisone taper. I only got 10mg today. Yesterday I took off my Fentanyl patch for pain. I've felt like crap all day. I didn't even fix my tail.

Been posting and surfing and writing all day. I have cramps in my hands right now.

Tomorrow is physical therapy and another team meeting with the new doc on rotation.

My tail

For those who haven't seen my tail, here's a pic Ed took. Click to make it larger.

A moderate day.

Today was just an average day. I felt OK, had moderate amounts of energy, and did a few things around the house.

I also changed the oil and filter on the motorcycle.

For what it's worth, I'm over the argument with Doctor D. I'm going to let her lack of people skills pass under the bridge unless there are repurcussions at my Friday meeting with the new doctor on rotation. I can choose to carry a burden or I can choose to be the free man I am.

This evening I went out for Pho with my friend Linda. My GI elected to misbehave at the end of dinner, and I wanted to thank Linda for being patient with me. She's a good soul.

Tomorrow's plan? I have to do some sewing. My tiger ears and tail need maintenance. 5000 miles (8000km) and the thread wears out!



Anyway, life moves forward thru the miracle of modern chemistry.

Stressed.

My little toe-to-toe with Doctor D. happened about 13 hours ago. I'm still miffed. I'm still tweaked, and I'm still awake. She's not good for patients.