Wednesday, May 28, 2008

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.

Monday, May 26, 2008

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

More MM news as it happens.

Thursday, May 22, 2008

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.

Wednesday, May 21, 2008

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.

Monday, May 19, 2008

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

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.

Friday, May 16, 2008

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.

Thursday, May 15, 2008

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..........

Friday, May 09, 2008

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.

Thursday, May 01, 2008


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............