Saturday, March 29, 2008


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.

Sunday, March 23, 2008

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.

Wednesday, March 19, 2008

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.

Monday, March 17, 2008

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.

Saturday, March 15, 2008

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.

Thursday, March 13, 2008

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.

Thursday, March 06, 2008

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.

Wednesday, March 05, 2008

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.

Tuesday, March 04, 2008

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.

Monday, March 03, 2008

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, March 02, 2008

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.