Oddest thing. Heparin and Warfarin.

Warfarin / coumadin / steroids. What a combo.

I'm supposed to take 1 mg of warfarin every night. It's supposed to thin my blood so my Hickman catheter doesn't clog or block an artery. It's prophylactic. It's on Dr. B.'s procedures list. Dunno if the list is his or the SCCA's. (I suspect the latter.)

Doctor A doesn't like the stuff. He finds it excessive and wasteful. He thinks it's medically unsupported.

Myself? Let me tell you what happens when I take 1 mg every other day - half of Dr. B's recommendation.

I bleed thru my skin.

Why? Because I also clear my Hickman catheter every day with two saline flushes and two heparin flushes. What does heparin do? Prevents clotting!

Thus, two drugs that prevent clotting, some moving and carrying of boxes.... some associated banging on walls and boxes.....

Bruising that makes it look like Ed's an abuser..... and then the spontaneous bleeding thru the skin that leaves blood on my clothes....

Yeah, it sounds like drama. It looks like a cry for help. It's real medically stupid stuff and I'm stopping warfarin completely. If my blood isn't thin enough now, it'll never get thinner.

Dex depths

One of the things I (we) tend to forget about heavy dex loading is the longer term stress it puts on the brain and body. Initial loading produces the roller coaster and the catfish/seagull effect. But the ultimate truth is it just beats the hell out of you over time.

40mg twice a week, Monday and Thursday is problematic for me. The ramping seems to happen off-cycle now and the lingering effects really don't go away. I dosed 40mg yesterday. I felt like crud yesterday and I still do today. I was extremely unpleasant last evening. I'm tired much of the time.

I'm worried about the masquerade dex puts on. I might be feeling bad because the dex is hiding some giant infection I got on the road. No, there are no external symptoms besides feeling lousy. The blood tests show I'm healthy. Can't find a masquerade.

Anyway, I get up, deal with the general misery, and move along. Tylenol is back to being my new best friend.

It's not BAD, it's just not good.

'Roidapalooza

Hoo Wee! 'Roids again this morning. Followed by a full day of activities.

I felt like junk all day. Slightly loopy, having trouble with my vision. Generally grouchy and trying to keep from being "Tourette-esque". I wasn't always successful.

I went to IKEA for a few hours to get furniture for the Vancouver house. Bedding mostly. We're keeping the stuff we have here, here. I need a bed for after the transplant. A caregiver may need the other bed and we rather doubt a king size will fit in either of the bedrooms up north. Thus, both bedrooms are staying here in Seattle for several months.

So that stuff is loaded in the truck for a move this weekend.

Tomorrow, Ed and I will spend our Friday evening getting a new TV and surround sound system for the new place. We'll also get some wireless office things so again we'll have two complete systems. There's nothing wrong with doing the upgrade..... the system that's installed here is an 8+ year old NT server design that was upgraded to XP..... prehistoric by today's simpler wireless systems.

I also fixed the kitchen faucet today. It's a single handle design and it was dripping when turned off.... just a pain in the rear to listen to and pay for. So I got a repair kit and repaired it. $6.41 including tax. 30 minute job because I was slow and deliberate. I don't know how they build, package, ship and shelve that complete kit with 7 precision components for $6.41 with tax. Anyway, the sink doesn't drip any more.

So, plumbing, IKEA, dinner with our buddy Jay. Long day, high stress for everyone around me.

I love what the steroids do, but I don't love what I do with steroids. I'm not a nice guy. Tomorrow I should be beyond the clanking and doing the fast downhill on the coaster. I expect to improve on the morrow.

Unbelievable

I just got back from Dr. B. His words: "Amazing". The dexamethasone is working. It's working VERY well.

Quote from the lab work: "Previously identified monoclonal protein component currently not detectable by protein electrophoresis." This means I'm back down to ZERO. We slapped it silly again. Maybe the series of drugs over the last few months just wore it out. Who knows.

Pardon me if I'm elated. It means I can go into the mini allo transplant with as few cancer cells as possible. It means I'll go into the process healthy. That's a bizarre concept. You can't possibly understand how good I feel right now and it's not the dex talking.

Life is SWEET.

Head above water

I told you I'd post the results of the fresh load of Dex. First I want to mention that I did a dose of testosterone yesterday on scrip. I have no precise comment on testosterone's effects, other than feeling more male (if that means anything) and a slightly more sunny outlook on life. I suspect there's some augmentation of the dex. Maybe there's a symbiosis in my little brain.

So the report is that my head is bobbing above the surface today. I got some things done. I had a generally positive day. All in all, I feel better. The coaster is upward bound. Clickety clack. Clickety clack. Whoopee!

Dexamethasone and testosterone. Is there much of a difference between my sensation management methods and one who drinks Jack Daniels for dinner every evening?

I guess technically I do the dex for the curative effects. Maybe that makes me more 'pure' in effort than an alcoholic or junkie who's allowed external chemistry to consume every hour. But the unfortunate truth is that part of me is he. I want to feel good. I expect to feel better once I've swallowed the magic elixirs. I have expectations.

I stay the schedule. I know that unless the schedule is followed, there will be no up and down, no payoff. There would only be a mundane middle ground without the stops and starts. The down is not fun. It's the negative side of life that helps prove I'm alive. The up is enjoyable, but only in comparison to the down or middle ground. It also proves I'm alive.

Mind you, I'm whining.

Dex's Midnight Ride

Yeah, the title is a ripoff of a bad song.

I did 40mg of Dexamethasone this morning as per schedule. I'll try to let you know how it works out later.

Zombie

Dexamethasone. What a wonderful way to turn oneself into a mere spark of a human.

The numbness is staggering, quite literally staggering. I wake up with general (but limited) pain everywhere. I can't taste anything. I can't feel much. I deal with it all day long by going numb. I'm distant, vacuous, inactive, protective, defensive. The really sad part is that protecting all these little perimeters make me very highly aggressive on the psychological side. No, I'm not gonna hurt anyone but I'm not behaving well. I go from apathy to rage to 'crying for happy' in milliseconds. It's not cool. Thankfully I think I'm stable in my instability. I know what's going on. So does Ed.

Truth is, the beginning of the new cycles were sort of fun from the junkie side of things. The excitement, the rush, the 'seagull' of it all was enjoyable. The roller coaster ride began again and it was a rush. Now I'm just tired of being slammed against the side of the car. My ribs are more than figuratively sore.

Somehow I need to change my activity levels and motivation. I need to find something to do now. I need something I can measure. I need something creative. I need some progress. My return from the trip turned into a big hole in the road.

I guess I bumped into the Zombie when I pulled the bike into the garage. It's time to remove the contamination.

The party is over.

I'm back from 16 days on the road. Yesterday was a full day of doctors and chemo, starting with a blood test and then a pamidronate infusion. I guess the timing was perfect because I slept thru the entire process. I needed it.

My blood numbers are pretty normal. I lost a total of 14# on the trip but my chemistry didn't go as crazy as I thought it would. I'm not anemic nor is my white cell count up. I'm still a healthy cancer patient.

If you look at the other blog(s), you'll find that I've been scheduled for a "mini" allogeneic transplant. The actual process begins with a meeting on July 17th. There are meetings, tests, processes, stuff..... and then the theory is that we'll stick a bunch of chemo in me on August 1, 2, and 3. Then they'll irradiate my whole body until I glow in the dark on the 4th. Then they do a small infusion and stick me in the hospital overnight. In the morning they'll send me home and ask me to see them once a day for the next 120 days. I'll be a bit of a prisoner until we find out where the disease will take us.

Ed will be in Vancouver. I'll be in Seattle. Ed's visa hasn't been approved for his return. It's gonna be interesting. Hopefully they'll give me a brief respite on the weekends so I can go visit my husband.

Meanwhile, Ed starts his new job in 11 days and we're not moved yet. Gotta get off my butt and participate.

Oh, the husband part..... we'll be legally married on July 3rd. It's part of the plan. Sorry it's not an official celebration. We're treating it like the purely legal thing it is...... rather like passports and drivers' licences. Everyone knows we're as married as two people can be. We're just going to make it official.

We'll celebrate the wedding and my survival later. Time for progress and change.

Vacation

As part of my "get on with life" program, the next 16 days will be bloggesd at http://wandering-tourist.blogspot.com

Epic failure

I had an appointment with Dr. B. a little over an hour ago. It was a little strange because the nurse took my vitals and then Dr. B. came into the room by himself. No PA, no wait, nothing. Just blood pressure and Dr. B.

The conversation went quickly to this:

"Well, let's get right down to brass tacks. Your disease is coming back with a vengeance. Your numbers are twice what they were last month. You're running out of options quickly. We should have done the transplant yesterday."

Crap. Crap crap crap crap.

He showed me the numbers. Sure as hell, they're very close to being where they were before the autologous transplant. We wondered how much time the auto was going to buy me and now we know.

So let me throw in a few complications. Ed and I are going to attend a wedding in Banff, Canada on Saturday. I'm off on a 2 week motorcycle excursion this coming Monday. I return on June 17th. Ed and I have to be moved up to Vancouver before July 1.

In Dr. B's perfect world, I'd get a transplant in there somewhere.

So we've come to a logical and practical compromise. I'll take that strong, nasty stuff they call dexamethasone for a month while our life moves forward. I'll call the allogeneic transplant team tomorrow and get the ball rolling to prep and harvest from the donor. Meanwhile I have to keep from freaking out. The party's over. Time to do the hard stuff now.

Rush away rash

I've been off the Thalidomide for 6 days. The rash started to go away after the first day and now seems to be in the healing stages. Dry skin in patches and lots of flakiness around the spots.

I had a blood draw today and my 'red line' isn't drawing correctly again. I failed to document that I had a tPA done a couple of weeks ago. tPA stands for Tissue Plasminogen Activator. Basically it's a very short-lived blood clot eliminator. Get an infusion, go away for two hours, come back to see if the 'Drano' worked. Well, it did but we're now back to a slow/difficult line. Just to help you understand, a Hickman central line is a two headed beast with one red colored outlet and one blue colored outlet. The whole Hickman is an outwardly single tube but it is internally two seperate tubes. It's threaded thru and under the skin on my chest, upward to my Jugular vein, then down inside the Jugular to my heart. It allows simple infusions and blood sampling/extraction. Generally the red line is for blood extraction and the blue line is for drug infusion. I've had this thing since October 24, 2007. Seven months with a hose hanging out of my chest. A hose that turns a simple shower into an hour-long event. Undress it, protect it, shower, sterilize it, dress it again, clear each line with saline and heparin, wear a t-shirt to help it stay in place. Did I mention the necklace I have to wear to secure the ends of the Hickman? The one that helps it from being accidentally pulled from my chest? Strain relief for the Jugular?

I'm scheduled to see Dr. B. on Wednesday afternoon. We'll discuss the next transplant and figure out what new maintenance plan I'll be going on.

Friday morning Ed and I will be going to Banff. Then I'm off on a long motorcycle ride on Monday, June 2nd. I'll be back home on the 17th.

Don't worry if there's not a lot of news in this blog. There'll probably be much more news at http://wandering-tourist.blogspot.com

More MM news as it happens.

Happy birthday to me!

I'm 53 today. I was 51 when this whole mess started. I've gotten almost two years out of this so far. I can't complain.

Scratch the thalidomide

My doctor took me off thalidomide (thalmid) today. The rash is bothering him almost as much as it's bothering me. We'll discuss new maintenance therapies next Wednesday when we have our regular appointment.

For Tracie

Tracie wrote, in part: "My dad was diagnosed with MM Sept 07, it has been one hell of a yr so far! He was on velcade/doxil/dex and had a very good response to that (they never say "remission") and he is due to have an "auto" transplant in early June (have you had one of these?) It has been delayed twice because of problems, so this evolution-that the cancer may come back before the transplant has been a big worry. Well, I guess all we can do is take one day at a time, right?"

Yes Tracie, I had an autologous (auto) transplant. There is a period prior to transplant when all the patient's bone marrow is killed by chemo. Then there is a day when the patient's previously harvested cells are injected back into him/her so that they can engraft, or start to grow again. This day is generally called our "birthday". Mine was November 30, 2007. I was having a new birthday at about the time your family was coming to grips with the whole ordeal.

It seems like your dad is pretty lucky to be ready for stem cell harvest this early in the game. His numbers must be impressive and/or the Vel/Dox/Dex was very effective against his disease.

Your dad will need lots of support after his new birthday. The auto transplant isn't an easy endeavor. His whole body will mutiny and it will be up to him to maintain order on the good ship "Dad".

As a patient, let me reaffirm what his doctors will tell him:

1) All of his mucus membranes will fail him. This will include everything inside his mouth, nose, eyes, stomach, and intestines. They will be dry and irritated. He may be able to tolerate the burden at home, but most patients get to a point when they decide it's best to go into the hospital for a few days. Don't look at it as a sign of weakness. It's just a necessary step in recovery.

2) Make sure he stays active, VERY active, no matter how bad he feels. I had some rather severe reactions to the process and they kept me in bed for a long time. By the time I was finally able to act on my own, I was severely atrophied. I lost all my muscle tone and couldn't keep my balance or walk up the stairs in our house. If I had paid more attention to staying in shape despite the misery, I would have recovered in half the time. It took roughly 3 months for me to get back in the swing of things. I could have done it in a month if I'd kept plugging along.

3) He will have an extremely bizarre sense of smell and taste. This will be coupled with a strong potential for being sick to his stomach. Spontaneous projectile vomiting can happen without warning simply because someone says "chocolate milk" or if he smells a banana. He'll have his own triggers that will set his stomach in motion. DO NOT let him eat his favorite foods until he's recovered and his sense of smell/taste has returned to normal.

4) He will have no appetite and will lose weight. Try to feed him citrusy and tart/sour foods. They seem to taste most like they originally did and this can be helpful for getting some food in him.

Finally, some questions from me. Where is your dad getting treatment and how old is he?

Here's an FYI for all of you. I can be emailed directly at andreshomescapes@hotmail.com

Roobeedoo asked:

Roobeedoo asked: "....the timing is a bit pants - I thought you were moving in July?
So... thick question - is evolution what happens to everyone with MM?"

We're actually moving in the latter part of June for a July 1 start date.

Ed has suggested I stop using evolution and call it mutation. They both arrive at the same point, but the connotation is that evolution is positive and lengthy whereas mutation is negative and rapid. It's a matter of perspective.

Cancer cells are mutated 'normal' cells. They replicate at tremendous rates. When subjected to environments that impair them, they evolve into something that isn't affected by the environment. The chemo and the radiation stop being effective because the cells have evolved from their original mutation into something that can easily endure the onslaught of modern science.

Despite the splitting of semantical hairs, the answer is "Yes". Evolution / mutation happens to every cancer patient in due time. I suppose there are treatment programs for certain cancers that are quick and complete.... that can excise the cancer with alsolute efficiency, never giving the mutated cells time or reason to evolve.... but MM isn't one of those cancers.

My little mutants have mutated once and evolved once. Hopefully the transplant will overwhelm them without overwhelming me.

An explanation

Roobeedoo commented: Maintenance isn't working"? I am confused - I thought you were in remission? (Sorry about the rash.)

Allow me to clarify. The Revlimid and Thalmid drove me into remission, but they were also being used as maintenance to keep me in remission. The chemo beat the cancer back and was expected to keep it there for a while. Now if I can't use Revlimid or Thalmid, there will be almost nothing to keep the cancer cells from replicating, evolving, and overwhelming my system again.

One minor thing I haven't discussed much is a little thing called evolution.

Since I developed this lovely disease, the cancer has gone thru at least one evolution and has become another form of MM that doesn't react to the standard treatment I received in the past. It is currently responding to the course of treatment we're using now, but it's expected that the disease will soon evolve into something that isn't affected by Revlimid or Thalmid. The cancer will develop its own immunity to the chemo. This could happen next week or next year. Nobody knows.

But the point is that I'll eventually have to deal with an unfortunate truth. There will come a day when no chemo can fight it any more. This situation will be recognizable by a single event..... My blood numbers will go awry, and they'll do it in spectacular fashion in a short period of time. I'll suddenly go from "unquantifiable" to "OMG!" in a month.

This will be the point when we say, "We should have done the transplant LAST month."

See, the best transplant results are realized by patients whose disease is least active at the time of transplant. We want my numbers to be low, low, low for transplant. It improves the response and lowers risk. But if we wait too long and the cancer makes progress, we shift the scales of survival away from the patient.

We had been thinking about doing the transplant in September or October. But without a working maintenance program we'll probably have to do it earlier. Why? Simply to lower risk. We can expect the cancer to run wild without the restraints of chemo, and we don't want the cancer to have a head start on us before transplant. We need to do the transplant before the cancer wakes up again. Our window is short.

Can I do it in July? Certainly. August? Yes. Afterward? We're running a risk.

Meanwhile I wonder if the rash is comparable to the catfish/seagull of dexamethasone, or the GVHD from the transplant for that matter.

Meanwhile, the house is for sale and we're moving.

Rash Rehash

It's back. The RASH FROM HELL returns with a vengeance. I'm just a few days into Thalmid / Thalidomide and I'm rapidly turning back into "Spot". Red patches on my torso, itchy skin, puffy eyes, blotchyness and little water pimples on my face.

Revlimid and Thalmid are chemically related.

What does this mean? It means I have to go off Thalmid. It means my maintenance program will consist of steroids that are less effective than Rev or Thal. It means there will be very unpleasant side effects. Seagull/catfish all over again. Swelling of the ankles, attitude problems, binge eating. The works.

But ultimately it means I'll have to do the transplant. Maintenance isn't working and we can't let this sleeping dog lie.

Crap, I'm wondering if the rash is any worse than the steroids..........

Odd side effect.

I discovered an odd side effect of my cancer treatments today. I went to a national chain store for an oil change.

Apparently I've only driven my truck 450 miles per month for the last 15.5 months. Yup, 7000 miles in roughly 1.25 years. 5400 miles per year. Odd.

Answers

Maybe I'm just whistling past the graveyard, but I'm starting to recognize my new role as a cancer survivor instead of a current cancer patient. Technically I'm both, but I guess a transition has been coming for a while. There are no agressive treatments, no 30 / 60 / 90 day agendas, no 'next phase' in my treatment. Yes, there are options and considerations, but there's no definitive course of action looming over our heads.

And so, Ed and I have to get back to living. I can't remain the zombie I've been for the last 18 months.

Now I realize that zombies don't actually exist, but I am struck by this philosophical parallel: Cancer patients often become, almost literally, the undead. We're given shocking news, and from that point forward, our primary focus is to stumble aimlessly with outstretched arms in search of something vague and unexplainable. We mumble, moan, and shuffle along with no clear path. We become zombies and this isn't "Thriller". We're given stage blocking, but there is no music or choreography.

In any case, I believe springtime, our imminent relocation to Canada, and my 'near CR' couldn't be better timed. We have to wake up and smell the cappuccino. It's time to liberate ourselves.

A couple of you asked questions about yesterday's revelation. Here are most of the answers:

1) As to "Now what?" and "Are you off the drugs?", I'm going on a maintenance program of Thalmid (Thalidomide) starting Monday, May 5th. This program will replace the Revlimid program I've been on for the last 2 months. Obviously the Revlimid worked quite well against the cancer, but the severe rash is a detriment to the treatment plan. The Thalmid dose will be 50mg per day, or 1/4 of the original dose that made me hate the drug. We still have the future option of an unrelated donor transplant.

2) As to Hammer's questions:

What's the impact of 'overdoing' it?
There really isn't any specific impact. I'll simply be tired or stressed exactly as any normal person would. There are known complications of the steroids, such as joint deterioration, redistribution of body fat, and muscular atrophy, but these are the things I need to fight against, not accede to.

Can the type of cancer you have be triggered by heavy exertion?
No, this cancer can't be born of work. There is one effect of the cancer that I have to watch for, and another effect from some of the chemo I've been taking, but I can generally exert myself as much as I choose.


Is there any chance that a highly active lifestyle leads to a higher risk?
As I noted above, there will be two significant concerns going forward. One is that the disease tends to make my skeleton deteriorate. The bones are decalcified by the cancer itself. This causes void areas and general bone weakness that must be considered. In addition, one of the chemo treatments I take tends to turn the bones into something akin to Durock underlayment (a concrete sheet). My bones are brittle/crumbly, not very dense, and will not heal well if broken. It would not be wise for me to continue motorcycle roadracing as my hobby. An accident that I would have walked away from in the past would probably break several bones now.

And regardless, you do need to watch the rest of your health. It would really suck to die of a heart attack now.

Fortunately, my general health is still good. Blood pressure? OK. Cholesterol? OK. No diabetic tendencies. Nothing we're really watching for. I keep telling the docs that if it weren't for this pesky cancer thing, I'd be a perfectly healthy specimen.

But I have to start doing something about my weight. I came in at 180# on the doc's scale yesterday. I was just under 160 not too long ago. The fat redistribution from the steroids has put all this weight on my torso with very little of it going to my legs or arms. I have a beer belly now and it's not from beer.

And so, this becomes part of my plan for living............

Near CR

Euphemisms. Funny little things. Once upon a time, euphemisms were only used to make unpleasant terms more palatable. Now they're used to keep people from thinking or expecting too much. They seem to be created by people who really don't want to commit themselves.....to be blunt.....to be direct and well defined. I think they're the spawn of marketing think-tanks and legal departments.

"Let's not tell them the product is 'good', because 'good' is subjective. Let's tell them it's 'better' because 'better' can be proved in court."

This week's euphemism? "Near CR", or "near complete response". What the hell does that mean? Technically, it seems to mean that a patient's drugs have been nearly as effective as one might hope they could be. If we boil that down a bit, it means the patient's disease has been severely minimized, or the patient is "in remission".

But of course, we can't say "in remission" because patients apparently jump to the conclusion that they've been cured.

REMISSION: From the American Heritage New Dictionary of Cultural Literacy, Third Edition:

A period in the course of a disease when symptoms become less severe.

Note: The term remission is often used in speaking of sufferers from leukemia or other cancers whose symptoms lessen or disappear. In such a case, the disease is said to be “in remission.” The period of remission may last only briefly or may extend over several months or years.

Ok, so what's this really all about? I saw the doctor today. He looked at my blood numbers and announced I was in "near CR". The cancer can still be found, but the numbers are so low as to be unquantifiable.

I'm in remission because the cancer has nearly completely responded to the drugs.

Crap, now I'm gonna have to start paying attention to my health....... Lose some weight, watch my cholesterol and blood pressure, get some exercise. Live again.

Rash-onal behavior

The rash is subsiding. The itch is dissipating. But the dry skin is proliferating everywhere the rash has been. If I rub my forehead, there's fallout. If I take off my shirt, there's a cloud of skin particles that fill the air. YUCK!

In my mind, this is proof that I'm reacting badly to Revlimid. Unfortunately, my hubby "Mr. Science" wants me to go back on Revlimid for a few days to see if the rash reactivates. He cites true scientific procedure as the basis of his request. He wants proof, not supposition. Further, he cites a research paper that concludes patients get better anti-cancer effects if they get a rash while on Revlimid. Ok, one measly research paper with two authors. It's basically a study of patient records. There's mention that two patients had rashes severe enough to warrant taking them off the drug.

"Frankly, Scarlet, I don't give a damn!"

Let's just consider me one of the patients who had to be taken off the drug. Let's also consider me someone who doesn't want to go back on Thalidomide. We'll see what happens on the 30th.

Have I mentioned that, in general, cancer sucks?

Acting rashly.

I saw the oncologist today at 1p. When the PA walked thru the door, she stared in disbelief. She got the doctor. His first words were, "Oh my god, look at you!"

Yeah, the rash is BAD. It itches. It's everywhere. Everywhere. Yeah, there too.

Result? I've been taken off Revlimid. It's been replaced with nothing.

Now let's think about what that really means..... It means I'm not on chemo as of 2p today. No chemo = no cancer control. No delay. No reduction in symptoms.

I have another appt with him on April 30th. We'll assess the rash again. We might shift me back to Thalidomide. We might not.

Pick one from Column A, one from Column B. No substitutions please.

Rash decisions

You may recall a minor entry that described a rash I've been dealing with for some time. I saw a dermatologist who prescribed a combination of topical steroids for the condition. The rash got worse.

I had an appointment with Dr. B. We were having a conversation with his PA and she mentioned using Eucerin Aquaphor since the rash was accompanied by lots of dry skin. Bingo! The PA was right. The DR was wrong.

And so, last week was the nadir of the rash. No itching, no new spots, no powdered skin when I took off my shirt.

But 2+2 didn't make 4 in our little heads. See, I've been on new chemo for a while, and last week was the "time off" for dosing. The schedule is 21 days on, 7 days off. (Rinse and repeat)

To put it simply, the dry skin was resolved with the Aquaphor, but the itchy rash went away while I was off chemo. Guess who's been back on chemo for the last 3 days. Guess who's had a rash for the last 2 days. Guess who woke up this morning looking like he'd been punched in the face and then stung by bees. Guess who is NOT HAPPY.

What the heck. Just call me Spot.

Collection and freezing.

The word from the SCCA is that they will not collect donor stem cells and freeze them for later transplant. Bummer.

That leaves us with two options:

1) Do the harvest and transplant in a few short months.
2) Wait until it's a requirement and hope the donor is still suitable and willing.

Heads or tails?

Calcium count

I got a call from the SCCA today. There is a "problem with my calcium levels". They want fresh blood tests tomorrow at 1:30.

What does it mean? Most likely, the counts are high. Two potential causes come quickly to mind.

1) I drink a heck of a lot of milk.
2) The cancer cells are dissolving my bones again.

Yeah, it's SO much fun.

The SCCA and Dr. B

We saw my oncologist today. He wasn't up on the facts as far as our good luck with finding a 9+ donor. The reaction to the good news was simple: "That's a great find. You probably can't find better!"

We were pleased to hear that. It means we're on the same page as far as selecting this particular individual.

Of course, there are complications:

1) The SCCA is requesting searches on an additional 15 individuals. It seems odd if we've already found the golden egg.

2) I'm on maintenance and would like to delay the transplant. Unfortunately, general policy states that they won't harvest from a donor and then freeze the cells.

A) This means I have to do the transplant now, or:
B) Stay on maintenance until it stops working, then hope/pray that the donor is alive, healthy, willing, and hasn't already donated before. (Apparently they only use them once.)

So we ponder the new options.

1) Searching for 15 more donors would give us a larger group of individuals who might donate in the future. We can at least put the names in reserve if we can't put the actual cells in reserve.

2) Waiting on maintenance to fail can be a sudden revelation. If my blood numbers suddenly spike in a month, it would be ideal to have done the transplant in the prior month. I don't have a time machine.

3) Doing the transplant right now, even with the golden egg, isn't something I want to do. If I'm gonna be really sick or die, this isn't a really good time. It would be far easier if we were settled in Canada.

Ponder, ponder, ponder.

Fragility

I came within a half second of being killed on Thursday. Yeah, really.

One of my friends was buying a motorcycle for her girlfriend. I found the proper bike, tested it, inspected it, and then bought it on their behalf. The friend and I picked it up on Thursday morning and I rode it back to their house.

About halfway there, I came upon an intersection that made me a bit cautious... An SUV turned left across my lane.... not dangerously close, but not as comfortably as I like..... I'll call this SUV#1

I must have noticed that the Jeep SUV behind SUV#1 approached the intersection rather aggressively, because I took note.... I assumed she might not have seen me because SUV#1 blocked her view. Years of experience playing CYA on the street.....

And then she stopped and we made eye contact so I proceeded thru the intersection at about 30 mph.

That's when her tiny little brain failed. She kept her eyes on me as she quickly began to accelerate and turn left across my lane. I was close enough that I didn't get to the brakes until I was on her. Fortunately, her brain reconnected and she stopped her crusher without blocking all of my lane.

After I un-clenched my ass from the seat, I actually laughed about the whole thing. Oh, the irony! Think about how many people would have had a sucky day if I'd impacted the front of the Jeep.

1) My friend would have lost a decent sum of money. She hadn't insured the bike yet.
2) The girlfriend wouldn't have gotten her big surprise.
3) Ed could be burying me or visiting me in the hospital again.
4) My part would have sucked regardless of whether I died or was just maimed.
5) The SCCA and the insurance company would have wondered what they'd been doing for the last 18 months.
6) My good readers would have asked WTF?
7) My family would have asked WTF?
8) Some meat-head would have posted, "At least he died doing what he liked to do.", as if I enjoy bouncing off the front of SUVs driven by the brain dead.

Yeah, some of that it tongue-in-cheek.

Remember a previous post about the possibility of being hit by a bus? Thursday was proof that life keeps happening to all of us, even cancer patients. None of us is guaranteed tomorrow.

I took it as a reminder: Be nice to people. Tell friends and family how you feel. Smile.

Food, self indulgence, and normalcy

I've been eating like a pig for the last 2-3 weeks. My last weigh-in showed me at about 175#, a gain of about 15# from post-transplant. The rational side of me says this is a good thing. The emotional side of me says it feels good to enjoy food. The truth is that I need to slow down.

The physical therapy helped a lot in the weight gain department. It made me active quickly and encouraged me to stay active at home. The domino effect took over and I gained strength and endurance fairly rapidly. There seem to be actual muscles in my arms and legs again.

The new chemo, Revlimid, has caused very few side effects thus far. Peripheral neuropathy (PN) hasn't increased. I also don't think the Revlimid has made me as stupid as the Thalmid (thalidomide) used to. (Ed agrees.)

I've discontinued use of my anti-PN drugs. I still get charlie-horses in my feet and calves sometimes while I'm sleeping, but the cramps are better than the dopey feeling I get from the drug.

On Wednesday I'll see a dermatologist about a rash I've had for at least 3 weeks. We've tried everything to make it go away. Topical steroids, antifungals, disinfectants, different soaps, moisturizing creams, etc. It's pretty tenacious. It's slightly itchy and has restricted itself to the areas of my body that are covered by close fitting clothes. It's an inconvenience.

Maybe I'm allergic to beer...... NOT! There is no temporal correlation between my drinking beer and the rash. (But those are the depths to which we've searched for a solution.) Heck, maybe I should rub Budweiser all over my body just to make sure.

Anyway, spring has sprung, I'm feeling more human, and a new normalcy has crept into the house. It's refreshing to look uphill and not crosshill.

The plan

We've gotten all this great news lately and we think we've developed a plan that maximizes our good fortune. Here a recap of the facts:

1) A suitable stem cell donor has been found.
2) We're moving to Vancouver, CN.
3) I'm on a chemo maintenance program.

So, our plan is to:

1) Keep me on maintenance for as long as it continues to work.
2) See if we can harvest stem cells from the donor now and freeze them until they're needed. We don't want the allo transplant until there's no other option.
3) Move to Canada.
4) Keep me on Ed's COBRA benefits.
5) Drive back and forth from Vancouver to Seattle a lot.
6) Investigate Medicare / Medicaid
7) Try to make me a Canadian permanent resident and eventual citizen. (We've already contacted an attorney.)
8) Enjoy life in the maze.

Life is exciting in our house.
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Freaked out.

I got the call this morning at 9:01. They found a donor for my allogeneic transplant. It's a 9 of 10. Apparently the single mismatch isn't absolute, so they're calling it a 9.5 of 10.

Half of me is ecstatic. The other half is back to being scared. What to do, what to do?

Ed's trying to be the Rock of Gibraltar, but I can tell his brain is spinning around too.

Letting the cat out of the bag

Back in the middle of '05, Ed applied to the Canadian government for Permanent Residency. He was granted Permanent Resident status in October of '07. He can become a Canadian in three years.

Now, this is where I let the cat out of the bag. Ed's been offered a terrific position in Vancouver, Canada. I can't tell you exactly what the position is until the final paperwork is signed, but I can say it will be seen as pivotal in his career. Yeah, this is a big deal for us.

So we're now investigating what it'll take for me to become a Canadian. There's the obvious "marriage" method, but even that isn't guaranteed because of my ongoing health issue with the MM. The Canadian government doesn't want to become a haven for sick US citizens, so there are a few hurdles to cross. We're in the process of contacting attorneys and looking at options.

In the meantime, we'll simply be a bi-national couple for a while. I can't stay in Canada for more than 6 months at a time. Yes, they actually seem to track it.

Once Ed leaves his current position, we'll keep me on COBRA and I'll continue to get my medical needs serviced in the US. Hopefully the transition to the Canadian system will happen before the COBRA runs out.

So, the recap is: Ed got a terrific job and we're moving to Vancouver in July. We're selling the house, getting rid of a lot of stuff, and will be living in a place that's roughly half the size of what we have now.

We're both looking forward to it.

Another milestone.

It's been 18 months since my PCP told me I had cancer. 18 months since we had the big, scary sit-down. 18 months since our lives took a left turn across heavy traffic. 18 months of hell for both of us.

Ed and I took a few minutes to look back at the last year and a half. Ed remembers times when he was slightly afraid to look in on me, for fear he'd find me lifeless. I remember times when I could have easily given up and passed into the great beyond.

But now, we're glad we fought the dragon together. It was the only way we could make the beast surrender.

Our life together has changed. Our lives as individuals have changed too. Fortunately now, everything is moving in a positive direction and life looks good.

So, we're glad we've been given the last 18 months as a precursor to many many more. It's hard work but it's worth it.

All the news that's fit to print.

Ok, here are the results of the restage.

Bone marrow biopsy - Low numbers. Very good news.
Basic serum protein - Normal human levels, but mildly increased over two weeks. Not unusual or concerning.
Protein electrophoresis - These are the alpha, beta, and gamma numbers that we've discussed previously. My last report was that they were too low to measure. Now they're high enough to measure. It's been explained to us that the numbers we have now are still good and well within normal limits for a myeloma patient.

Further, the skeletal x-ray series suggests that bone deterioration has stopped, there are no additional voids, and that there is the possibility that some of the voids are smaller than previously seen.

All of these things suggest that the disease is currently stalled in its progress but it's not gone. I'm not cured (we never expected that).

Essentially, the auto transplant bought me some time. The question is, did it buy me more time than I spent on the transplant and the subsequent autoimmune issues? I'm still not as strong or fit as I was the day before the transplant. Did I gain anything in the net? Will I recoup December, January, February and March? Will I finish March in the condition I was in November? We'll see.

Now, for the next phase, since my numbers are currently as low as they've ever been under the SCCA's care, I'll be put on a maintenance program of Revlimid. Revlimid is supposed to be a Thalmid/Thalidomide parallel with less side effects. However, the known side effects include peripheral neuropathy and mental issues including "dopiness". The cycle will be 21 days per month.

I have to say, if Revlimid is anything like Thalmid, I'll quit it in the first two weeks. I rather go back on steroids and simply disintigrate from the outside in, as opposed to being debilitated from the inside out.

On the bright side, I feel better every day so I'm still recovering decently from the transplant and autoimmune issues. I'll probably feel great by the time they find an allo donor. I find a bit of coincidental humor in that.

Doctors, plural.

Roobeedoo wrote a comment yesterday that made me count one of my blessings.

"I can't imagine having two sets of doctors to deal with - it's confusing enough with one!"

I'm lucky enough to have three doctors! I keep one at home and make him explain the other two to me.

Big Dummy!

My appointment with Dr. B isn't until tomorrow (Wed). They looked at me a bit strangely when I showed up today. I must be anxious.

Doctor A

I visited with Dr. A yesterday. I'll visit with Dr. B today.

Dr. A wants me to go on a drug called Revlimid. It's an analog of Thalmid (Thalidomide). Revlimid supposedly doesn't have the neurological side effects of Thalmid. Neuropathy and loss of mental acuity aren't supposed to happen with Revlimid. I forgot to ask if his maintenance plan includes steroids. Yuck/yippee.

I find myself wondering why Dr. B hasn't suggested Revlimid as our next step. Heck, I wonder why I had to bring up pamidronate infusions before they resumed. Have we moved off his radar screen or were we merely waiting for the restage?

Anyway, with the new info about the lack of allo donors, and the general sense that we're not part of the SCCA fast-track, Ed and I are going to ask whether we should transfer my cancer care to Dr. A. That way, I can get everything done at one place and under the supervision of one doctor. I might have too many cooks in the kitchen.

If the SCCA finds a suitable donor for the allo then we can make a decision and get back on the SCCA wagon if needed.

Oh, you probably wanna know something about my numbers: The cancer isn't gone. We'll get more info from the restage today when we visit with Dr. B, but the numbers I got from Dr. A weren't as I'd hoped. In fact, it looks like I'm back to where I was before the transplant. Confirmation comes this afternoon. I'll let you know.

The allo report.

I got an update from the allogeneic transplant team this morning. It seems that the two donors they found weren't suitable after retesting. Apparently some of the HLA factors carry more weight than others, so the final analysis showed that these donors are no better than 8 of 10.

So, no allo donors yet. However, there is another donor sample in house now and there's one more on the way this week.

What's my reaction? I'm partly relieved that I don't have to make a decision. Allo isn't scary if I don't have the option. On the other hand, part of me wants to know that the option is available. I wanna have my cake and eat it too.

For now, my blood pressure is staying low.

Sunday report.

Last week was interesting. I did physical therapy, occupational therapy, and saw a psychologist. The PT was great. It helped me discover which muscles were most atrophied and which had shortened and needed stretching. The supervised exercise kept me from overextending myself. The therapist freaked when my heart rate hit 164, but when I explained that my red blood cell (RBC) count was incredibly low, she was a little more calm. My RBCs are low enough that I'm probably processing oxygen as if I were at 10,000 feet. I'm not worried.

Occupational therapy was just an interview. I'm not having trouble taking care of myself, nor am I trying to get back to a job that requires lots of physical exertion. We decided not to proceed with OT.

The psychologist thing was interesting. He and I decided I was probably the healthiest person he would see all day. No need to see him again. I'm apparently sane and enjoying life.

Ed and I worked on the new bathroom on Saturday. I actually got tired instead of falling victim to indifference. Cabinets were mounted. Countertops were installed. Monday starts the next phase of installation with the sinks and faucets.

I was electronically interviewed this weekend by a fellow motorcyclist. The link is here. Read it if you're interested.

Next week is: Dr. A on Monday. Dr. B on Tuesday. I hope to get some info from the allogeneic transplant team on Monday morning so I can talk to the docs later in the week. Numbers and details are forthcoming.

Passing

I got the news last week that one of my old motorcycle racing friends died unexpectedly of pneumonia while on a business trip. He and I shared a passion, a racetrack, and a birthday. I think we once calculated that I was just a few hours older than he. He was always faster than I.

It struck me as odd and quite unfortunate that a man who had raced from his earliest years until he was about 50 would die of pneumonia. In some backwards way, it reminded me that none of us is guaranteed tomorrow.

We'll all miss Laroy Montgomery. May he rest in peace.

No need to worry.

I haven't updated the blog in a while and people seem concerned. Don't worry, I didn't die. I've actually been living a relatively normal life and I'm trying to break the routine of being a full-time cancer patient. Ed and I are starting our life up again.

Facts: I feel better every day. I haven't woken up and expressed an epithet in at least two weeks. My energy and endurance levels are improving. My strength and flexibility are improving. My appetite is out of control!

I should probably mention that Ed is out of town at a ski resort some 9200' in the air, in a suite with a fireplace that overlooks the 5 acre ice skating lake they Zamboni every couple of hours. Yes, it's on someone else's tab.

On my side of the planet, this week has been pretty active. I rode the motorcycle over to the SCCA yesterday (Monday) for blood tests and a pamidronate infusion. The infusion center was backed up 1:45 and the whole procedure only takes 2 hours, so I was pretty frustrated with that. I got to the facility at 11:30 and got home at almost 6:00.

Today's fun started at 10:30 with a bone marrow biopsy. I have to admit that today's nurse was a complete pro at the procedure and it hurt about 1/5 of what my last "fully conscious" biopsy did. This was followed by a complete skeletal X-ray series so the docs can find the voids in my bones. I really want a set of DICOM images from this series. The whole set was done digitally and I wanna see the pics for myself.

I was out of there just before noon. 1.5 hours total time. Some of the departments are more efficient than others.

I have a blood draw and physical therapy tomorrow for 2 hours. I expect that's gonna hurt more than the biopsy....

Strong weekend

My energy and activity level has been pretty high all weekend.

On Friday and Saturday, I puttered around in the garage. Nothing really major, but it was better than sitting in front of the computer and blogging.

On Sunday I rode my motocycle about 100 miles until my butt got sore. (Gotta get some glutes back on me.) Ed made another pronouncement for Filipino food so we went to Kawali Grill again for dinner. I'm glad Ed says he's over this particular food phase. No more Filipino food for a while. I prefer a bit more diversity in my meals.

Monday (today), I installed the mechanical part of the cruise control in Ed's car. I'll do the vacuum and electrical another day. Layout and creation/customization of bracketry took up about 4 hours of the day. Doing the electrical part is gonna require crawling around under the dash of a very tiny car. Too much fun!

Holy Crap Two!

I just got back from the SCCA and a visit with Dr. B. The results from last week's electrophoresis were in. These are the magic numbers that quantify the level of my disease. We've been quite pleased to see these numbers drop over the months preceding my transplant, and they've dropped post-transplant too. But here's the shocker for the week:

IgA lambda (Beta region) - Too small to quantitate

IgA lambda (Gammma region) - Too small to quantitate

IgA kappa - Too small to quantitate

Total protein - 6.6 g/dL (placing me near the bottom of the normal range)

So what does it mean? It means that the single auto transplant WORKED. It means there are undetectable levels of the cancer byproducts/components appearing in my blood. It means we can assume there is very little cancer in my body.

We're scheduling a complete re-stage in the next two weeks. We'll know more then, but at this point, we couldn't have asked for better results.

Question of the day: If we found two donors, will I need them?

Holy Crap!

I just got an update from the SCCA on my allogeneic transplant.

They found two 9 of 10 donors.

Apparently the donors have already submitted new samples to the lab. This means they didn't reconsider their donation status (chicken out). HLA testing and retesting is currently underway at the SCCA lab.

So what are my feelings at this moment? Elated and scared to death. Elated at the opportunity, scared of the outcome. Ed and I have to talk about this.

There are no guarantees in the results yet because there's not been confirmation from the lab, but when you're told there probably won't be a match at all, and they come back with two, it's a shocker. I think Ed and I had our heads wrapped around me living out my days on a maintenance program. Now we have to revisit the scary options.

Drastic body changes.

You've read that my bilirubin has gone high and my platelets have gone low. I have no physical indications these things have changed and I won't get new blood tests until this coming Wednesday.

BUT, there have been some pretty drastic physical changes in the last 4 days.

1) All of the swelling, water retention and general edema disappeared magically on Thursday. It hasn't returned. What change did I make to effect this? I ate beans. No, I don't really think this is what turned the magic key, but I hadn't had beans in months and I ate a can. Odd coincidence.

2) Friday was the first day I started taking testosterone. It's administered topically as a gel that's applied to the shoulders and upper arms. It's supposed to be absorbed evenly over the course of the day, and the daily dosing keeps the levels even over the course of a month. There is value in having a fairly even level of any hormone in your body.

What can I say about it? My insurance doesn't cover all the cost, and I'm being charged about $70 dollars a month for my part (as opposed to less than $2 per prescription for everything else I take). It sounds comparatively expensive, but let me tell you, I felt shockingly male again for the first time in months and months.

Now, for you men who've never had a testosterone shortage and suddenly got it back, you have no idea what I'm talking about. Similarly, the ladies out there are clueless. Heck, I didn't know what I was missing until it magically reappeared.

I'm not talking about a sudden urge to pounce on anyone relatively attractive. I'm not talking about any physical manifestations. I'm talking about a sudden difference in attitude and sense of well-being.

Have you ever had one of those days when you wake you up and you just know the birds are singing and the sun is shining and the flowers are blooming? One of those days when you just feel GOOD? Springtime in your body? Well, that's what the testosterone did on day one and day two. Day three was pretty good, and today has been great. I got LOTS of stuff done today. My activity level has been high.

Anyway, surprising changes again. Maybe it's not a roller coaster, but it's an interesting log ride. We'll see if I make a big splash on Wednesday.

Roy Scheider

Roy Scheider of JAWS fame, died today of complications of Multiple Myeloma at the University of Arkansas in Little Rock. They're arguably the #2 facility in the US for MM. He'd been being treated for 2 years and died of a staff infection. He was 75.

Something's wrong.

I just got fresh blood test results from the SCCA.

My bilirubin levels have quadrupled in just 5 weeks. My platelet count is less than 1/4 what it was 5 weeks ago. If the platelet numbers continue downward at the current rate, I'll need another transfusion next week.

This is NOT good. Not good at all.

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.

(2200)

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.