Wednesday, December 31, 2008

Epic failure #2

Oncology visit today. Checking in to the hospital at 4pm local time. GVHD of the skin and gut. Hydration issues. Inability to eat.

I'm SO tired of this.

Friday, December 26, 2008


My brother and I were driving down to Seattle from Vancouver this morning and he made an interesting comment. He said he didn't know if he could do what I've done over the last two+ years.

Fact is, I know he could and would, and he'd probably be more gracious about it than I've been, but his comment caused me to think.

Each of us faces forks in our road on a daily basis. Sometimes the forks present viable options, sometimes the forks only provide an inconvenient detour.

One can never know what might have happened by taking the other fork. One can only know what's on the fork chosen.

When Ed and I were presented with my MM diagnosis, we saw it as a major detour in our lives. We saw no logical choice but the path we selected. Yes, we could have elected to do nothing, but we chose an aggressive course against the disease and that's the course we're still on.

However, this course has presented us with other significant forks in our road. That's the odd thing about the whole process. Once you get on this highway, you still need to make decisions and deal with the results. Having cancer does not absolve responsibility or remove future plans.

As an example, Ed could have refused his current position because of my condition, but we chose not to let the opportunity pass. In some ways it made our life more difficult in the short-term, but it will probably make our future (and certainly Ed's) better because we've taken this fork in the road. One can only postulate.

The thing that is most odd and unappreciated about the entire process is the incremental nature of it all. We started with a couple of cracked ribs and a feeling of malaise. Now we're beyond surgery and a pair of bone marrow transplants, into GVHD and asking ourselves 'quality of life' questions. We make social decisions based upon criteria only we understand. We've transitioned from me being a person with cancer to me being a cancer patient. Yes, I know it's semantics, but the difference is significant.

It's as if the diagnosis was a 5 pound weight we'd been given to carry around. At some random interval, somebody gives us another pound or two to add to our burden, and before long, you realize you're carrying half a ton of stuff and there's no place to put it down! Sometimes someone comes along and takes 5 pounds off the load by saying "you've engrafted", or ten pounds by saying "we see no tumor cells", but then they give you seven pounds back by saying "the graft isn't working".

From our perspective in the beginning, it would have been difficult to guess the size of the current load. From our current perspective it's difficult to estimate the size of our future load. We HOPE the load will be less than it is now, but we don't know. If I could foretell futures, I'd play the lotto.

Thursday, December 25, 2008

Merry Christmas '08

Christmas eve was eventful. I'd been in Seattle overnight for an appointment on Christmas eve during the day. It snowed like no body's business again.

The intent was to get my appointment done and head back up to Vancouver ASAP because my brother and his husband were flying in for a holiday visit. Their flight was late leaving Dallas, and then it was diverted to, drum-roll please, Seattle to take on more fuel.

I was still in Seattle and they were held captive in the big aluminum tube until it was finally allowed to fly north to Vancouver. When you consider taxi, take-off, and gate times, I think their trip from Seattle to Vancouver took longer than my drive in the ice and snow. But they're here now, and I'm here with Ed, and it's all good.

Two unpleasant things happened at the SCCA yesterday. I was 'emergency' scheduled for another transfusion because my numbers are so low. I waited 4 hours for the 'type and cross' and the blood delivery. When the blood finally arrived, IT WAS THE WRONG TYPE. 4 hours wasted and no transfusion! I have to return to Seattle tomorrow. Not good.

The second issue, and I have yet to tell this to my brother (but Ed knows) is that my oncologist, Dr. B. made the following statement. "I'm worried. The graft isn't working."

For the record, I've engrafted, meaning that the graft has taken over my body and apparently killed the tumors. However, the graft doesn't appear to be producing blood cells. Thus, I get growth factor "G" at every visit, and I've been getting transfusions like I had a severed limb.

I like Dr. B. He's not rude, he's simply factual. He tells it like it is without pussy-footing around. There's no pie-in-the-sky pandering and false hope. For him to say, "I'm worried. The graft isn't working." makes me think the graft isn't working and he's worried. (Duh!)

I'm worried. Ed is worried.

Of course, Ed is being positive about it, hoping and maintaining his cheery disposition. He's already investigating my options for another transplant. But i have to be honest. I don't know what to say or do about an option like that, even if it's possible.

Even Jesus was only crucified once.

Thursday, December 18, 2008

A visit with Dr. B.

Wednesday was my first visit to Dr. B. after the transplant. I had forgotten how agreeable he is.

I asked to be taken off of hydration. We agreed on what I needed to do, and then he took me off. Simple as that. Now I just have to hold up my end of the bargain.

3 liters of fluids every day. That's a bit over 100 US fluid ounces. In terms of cans of soda, that's about 8.5. (No, I'm not going to drink 8 cans of sugared beverages.)

I got more "G" yesterday. My counts are sliding again and we don't exactly know why.

Anyway, after the appointment, I loaded the truck and drove to Vancouver in a HORRIBLE snowstorm. There was almost a foot of snow in some areas. Snowplows made the interstate passable, but it was tough. Much of the roadway was frozen and I got a few wiggles out of the truck. Snowfall in one section was so heavy it was like driving into a fog bank.

But I'm here in Vancouver and it's warm in the house.

Sunday, December 14, 2008

Thursday thru Sunday

The SCCA gave me one unit of platelets on Thursday, as we expected. It was the first time I've ever gotten an A+ blood product, so it sorta marked a milestone for me.

Unfortunately I had a reaction (hives) about 3/4 of the way through the transfusion, so they dosed me up with Benadryl. If you've never had The Big B infused directly into your bloodstream, it will knock you on your butt in about 6 seconds. I slept in Room 23 until about 3pm. No hives afterward.

Since I was so groggy, I didn't get much done at home after I returned. I packed my computers and a few minor things, but none of my bigger jobs were accomplished.

So on Friday morning, I awoke to a ton of work. I had things that I needed to do before wandering north to Vancouver. I packed drugs, tools, clothes, some holiday things, my suitcase, and some sundry items into the truck and drove to the border.

Border crossings are getting weird. I have a Nexus card that allows for rapid transit across the border, but holy-moley! All I had to do this time was hold my Nexus card up while I continued to roll toward the guard shack. Green lights all the way. When I arrived at the guard, he asked where I was headed in Canada, then asked if I was carrying anything that I intended on leaving in Canada. I said "No". He said "Have a nice day". I'd love to see the technology they use for reading these cards, pulling up the data, and passing 'acceptables' through. I know they use vehicle weight records and they actively X-ray commercial vehicles. I wonder if I get a little dose every time I pass.

Anyway, I've been in Vancouver with Ed for two nights. Our landlord had a holiday party last night that we were invited to. Interesting group of people and lots of food. Unfortunately I wore out fairly early and we had to go home. The trip downstairs was arduous (not) since it had started to snow.

This morning we awoke with about 4 inches of the powdery white stuff on the ground. Ed's revelations about snow are pretty refreshing, just because he has no experience with it. He revels in the brightness and the quiet.

I'm going back to Seattle *early* tomorrow morning. I have a blood draw at 10:15 on Monday and an oncologist appointment on Wednesday.

My hope/plan is to return to Vancouver from the 18th through January 6. Now I just have to convince my oncologist of that.

Wednesday, December 10, 2008

Drug changes and another transfusion

They're changing my drugs again. Tomorrow I start on Dapsone and drop the Bactrim. They're also going to do a blood test tomorrow that might drop my FK506 (Tacrolimus) dosage. Afterward, I'm getting a platelet transfusion. I'm bruising WAY too much.

Depending on tomorrow's volume, that will mean I've taken 20 or 21 units of whole blood or platelets in less than 2 years. I don't know how many units of blood I was given during my intestinal surgery.

I'm starting to see why it's important for people to give blood.


Anonymous asked:

Well, I'm curious.... I know from blood typing that O is universal, so I would suppose that you could accept O donations, and probably will not be giving up any that you have - whatever the mixture - but do you ever become fully one type over time?
My S-I-L is going to be finishing up his Auto during the next few weeks and looking to the Allo in about six months from a female relative... because she is a 10... thank goodness. But will he have hot flashes afterwards?
I know you're not a doctor, but thot you might be able to draw some conclusions based on your research...? Thanks

Yes, I can accept O+ or O- whole blood. I should get A+ or AB+ platelets when available.

Yes, I will probably be 100% A+ within 90 to 180 days. That's 6 to 9 months post transplant.

No, you don't actually change gender, ever. It's just that your blood chromosomes will show you to be the other sex when they start looking for the XX or XY chromosomes. It's sorta like putting Ford stickers on a Toyota. It'll still be a Toyota every day of the year, but it could be misidentified as a Ford if you only look at one aspect of the car.

Here is an article that covers the XX and XY sex identification chromosomes.

Tuesday, December 09, 2008

Unusual thing.

I had my summary conference today. It recapped everything involved with the mini-allo transplant and the results. No real sense in recapping it here again, but the doctor did mention one thing I haven't thought about in months:

It seems I'm still male and will continue to be, because my donor was also male.

Sounds strange, but chromosome-indicated gender actually changes if there's a gender difference between the donor and the host.

Monday, December 08, 2008

Some more numbers

I've gotten a few new numbers in the last couple of days.

I have osteopenia. The numbers are in the 1.50-1.65 range. Osteoporosis starts at about 2.5. The condition is an expected side effect of MM. It is treatable.

My cholesterol numbers are high, but just marginally. Many of the drugs I'm on are known to contribute to high cholesterol. Nobody is worried.

In direct contrast to the previously quoted 97% to 3% Donor to Andre peripheral blood content, it seems that my blood type is changing. I used to be O+ and I'm now 60% A+ and only 40% O+. It is expected that I'll be completely A+ within the year. Blood transfusions are gonna get weird. I was given a nice little card that says something to the effect of, "If you check this guys blood type, call us and we'll explain your results."

For the record, I've felt like garbage for the last two days. The GI tract is NOT HAPPY.

The SCCA does it again.

It's Monday evening and I'm going to recap this last two days of foul ups at the SCCA. I have a "Summary Meeting" tomorrow and I'm going to make sure it's not a one sided conversation. They'll get my summary too.

On Friday at 11am, I was given my FOURTH schedule for the day. It covered the coming week (now this week).

On Sunday at 5:01 pm, I got a phone call from the facility checking to see why I'd missed my Sunday blood draw. There is no blood draw on my schedule. Further, what's the good of checking on a patient after the lab is closed? The caller indicated that I should wait until my scheduled 8:30 am Monday blood draw appointment and that my numbers were such that I would be getting a platelet transfusion sometime Monday after a "type and cross".

So I arrived for my blood test this morning and there was no "type and cross" ordered. Why had I been asked to block off enough time for a transfusion? I spent the next 2 hours there waiting for the most recent results so they could say, "Nope, no transfusion. Have a nice day."

So I went home and returned for my 3:30 "Summary conference". I arrived at 3 and was escorted to a conference room. I thought they were running ahead of schedule and was happy for the surprise. A man entered and gave me a synopsis of my blood results. We covered everything and I went home.

At 4:00, I got a call from scheduling asking "Where are you?". It seems the meeting I was granted WAS NOT the meeting I was there for, and further, that said meeting wasn't on my schedule at all.

They asked if I could return to the facility. I told them I could and that I could be there at about 4:20.

While I was on my way, they called back and told me to come in tomorrow. Three freaking trips to the SCCA in one day because they can't print a schedule.

I very nearly went POSTAL.

This, on top of "losing my poop" and asking for extra samples, doing emergency scheduling of blood tests on Sunday afternoons (within the last month), I really wonder what the heck has happened to the SCCA in the last 6 weeks or so.

I had a candid conversation with a person involved in advocacy. I was told that recently many patients have complained about disorganization, crowding, and scheduling issues, YET THERE IS NO INCREASE IN PATIENT INTAKE. In other words, the place is coming unglued, but it's not because they have more patients.

Sad. They do wonderful work when they work wonderfully.

Saturday, December 06, 2008

Elvis has NOT left the building!

Many of my readers expect my posts to dwindle now that I'm reportedly "healthy". I'll agree that I blog less when there's nothing novel happening, but I expect to switch from reactionary blogging to simple updates. Things still happen in life, and if I switch from panic mode to 'living life' mode, I can easily blog at least once a week.

Truth is, I'm always worried about the people whose blogs just STOP at some point. I think it would be a disservice to my readers if I didn't show some continuance, some perseverance, some reason to fight the battle, some purpose to it all. Maybe it's vain, but if I can help one person survive the mental war with cancer, it will have been worth all the hours of typing and introspection.

I know it's been therapeutic for me. I hope it continues to be so for others.

Friday, December 05, 2008

Just the facts.

I got all the facts today. Here they are:

Bone marrow is 100% from the donor.
Peripheral blood is 97% from the donor. (Only 3% "Andre")
Peripheral blood percentage may be higher than 97% because of transfusions.

M-spike, serum proteins are at undetectable levels by electophoresis.
M-spike, serum proteins are at minuscule levels by immunofixation.

CMV is inactive.
GVHD is not flaring.
Tapering off some of the drugs will take 6+ months. (MMF and Tacrolimus).

So I'm really gonna be released into the free world on December 10th. Certainly there are issues, such as drug dependency, potential GVHD flaring, and infection due to severe immunosuppression.

Ultimately, this is as good a result as we could have hoped for. I'm tired, frustrated, and HAPPY.

Thursday, December 04, 2008

Day 97 and 98

Today is Day 97 since my mini-allo transplant. Everything is counted one day at a time on Planet Transplant, and day 100 is a supposed milestone. (So are 120, 150 and 180.)

When you think about it in these simplistic terms, it's rather ominous. Why would you count each individual day as a goal / objective if the risk wasn't insanely high?

Anyway, tomorrow is Day 98 and I get some test results. Serum calcium and my M-spike numbers will be provided. They'll tell the tale. No cancer was found in my bone marrow biopsy, but these last two tests will tell us if it seems to be gone everywhere. Notice I used the term "seems". We'll still never know exactly. The Sword of Damocles is a reality for us.

Basically, I'll get one of three different answers tomorrow:

1) The cancer appears to be in remission.
2) The cancer is trending toward remission.
3) The cancer is still active and seems to be returning.

In any of these cases, I still have GVHD. That may eventually decline with drug changes and my body's willingness to overcome issues. It's a process.

Regardless, I'll post more tomorrow.

Tuesday, December 02, 2008

Communication skills.

So I told you the SCCA lost my poo. It turns out they didn't. My results were in the system and they wanted to know why I submitted a second sample on Monday.

I rolled my eyes and explained that I had nothing better to do than crap in a a pair of 4 ounce cups twice a week. I also admitted to shoplifting enteric kits to support my habit. After all, the little "hats" sell for big bucks to local gay theater groups who need wardrobe simulations of a nun's headgear.

As punishment for abusing the system, they made me do another nasal wash, even though the symptoms haven't changed. Then they gave me another shot of "G" in spite of yesterday's transfusion.

Then I asked them what the plan was, because nobody has shared it with me even though I've asked. Apparently they've decided to graduate me on December 10th and release me to my regular oncologist (who only sees patients on Wednesdays now).

I made the mistake of opening my mouth again and mentioned that I wanted to go to Vancouver on December 13 for a few days. Apparently they think midtown Vancouver is somewhere in Kenya.

"What are you going to do if you get sick?"
"Go to the hospital. The closest one is 4 blocks and the biggest one is 6 blocks."
"Well, as long as you have a plan."

Ok, so here's the plan, just for the record.
1) Try not to get sick.
2) If you get sick, go to the hospital with Ed and get help.

Golly, I'm glad I wrote that down. The complexities are gonna require me to follow a script.

It's painfully obvious I need a vacation from the program. I've been on the leash too long. 27 months of uncertainty is stressing me out. Several months of living alone aren't helping. I wanna go HOME and that's wherever Ed is.

(BTW - we're still not "certain". My M-spike results won't be back until this Friday, and some of my serum results aren't what I'd hoped for. We're back to hoping for the best but preparing for the worst.)