Hospital - Day 11

Ed here, in Seattle. I decided to surprise Andre by driving back right after work. I managed to get here in 2.5 hrs.

Andre still has the usual complaints: fever, nausea, headaches, chills and GI issues. When I arrived, he had been told to take his anti-rejection, anti-GVHD drug--cyclosporine in solution form, orally. The hospital had run out of the IV form of cyclosporine which they had been infusing through his central line for 3 hrs/dose. They've been giving him cyclosporine slowly because they want to minimize the allergic reaction he gets from this drug. We figured that taking the cyclosporine orally might put his allergic reaction in dangerous territory. So we decided to clarify with the nurse who, in turn, asked the night-shift doctor on duty.

Half-an-hour later, a man came in Andre's room WITHOUT putting on the required isolation gear (the yellow coat, pale blue gloves, baby pink face mask). Instinctively, I yelled at the guy and told him to suit up. It turned out he was the doctor.

I was willing to forgive him that time and give him another chance for redemption. Once he was appropriately attired, he started asking Andre some questions regarding his allergies, his symptoms, etc.--basically everything that should be in his charts. This completely ticked me off because it seems he doesn't know anything about Andre and his condition. I very bluntly, with a clearly annoyed tone, asked if he had even read Andre's medical records. He said "no". If looks could kill, he would be dead by now. He must have noticed my irritation because he then started to do the routine "doctorly" things on Andre (checking his vitals, listening to his chest, examining his eyes, etc.) with an apologetic gesture. After that he left and said that Andre can just take the 7 ml solution form of cyclosporine slowly over a couple of hours.

Andre's first ml of the drug ended up getting puked out. So's the second ml. I asked them to just get Andre the capsule version and we'll try it. So far, we've downed 1 out of the 7 pills. Six more to go. Wish us luck.

P.S. He finished all 7 pills at midnight. I'm back in YVR.

Hospital - Day 10

Ed again. Andre has been having a rough weekend. He still has a fever and this time, it's been present pretty much all day. Today, they took another CT scan. Originally, they were just going to scan from his abdomen down to his groin area. But because he woke up this morning with difficulty breathing, they decided to include his chest area in the CT scan and to put him on supplementary oxygen. This happened at about 2 this afternoon. At around 5:30 PM, his nurse came in and ask if I looked good in yellow.

The chest CT scan result showed some sign of potential viral infection. His blood draws still had not shown any infection whatsoever so they decided to get a different sample. This time, it's nasal washes. If you haven't had them, it's like this: the nurse squirts 5 ml of saline into a nostril and the patient needs to blow his nose as hard as he can, catching the washing in a cup. The same process is repeated on the other nostril. Waterboarding lite.

So going back whether I look good in yellow (I do), I and everyone who enters his room now has to wear a light yellow protective nylon gown, a pair of pale blue nitrile gloves, and a baby pink face mask with built-in visor. Andre now needs to be in "isolation" to protect the other patients on the floor from what he could potentially be carrying. It takes at least three days for the results to come back. Hopefully, it'll come back negative and that he'll start feeling better soon.

One more thing: because of his persistent GI problems, he had just "bought himself a GI consult" as his hospital oncologist said this morning. A gastroenterologist will come and talk to him tomorrow because they don't work on weekends (remember Andre's rant about gastroenterologists?). We'll know when the actual "spelunking" will happen after the talk with the gastro. The GI problems might be a manifestation of GVHD. I know we need a little bit of it since it's the same mechanism that is harnessed to kill Andre's bad myeloma cells, but I hope it'll be manageable.

This is it for now. It's Sunday night which means I go back to Vancouver tomorrow morning. Please keep sending Andre your love thoughts.

Another anniversary.

Today is the second anniversary of my initial diagnosis. We've officially gotten 2 years out of this regimen. Who knew.

Poking holes

Andre here. This brief entry is probably going to be the peak of my activity today.

The spinal tap (lumbar puncture) was relatively uneventful today. Very little pain. Over in 5 minutes.

I'm on TPN. That basically means they're feeding me thru a bag. It's about 2 liters of bright green 'stuff' that's infused directly into my bloodstream. I was on this same stuff when I had my sigmoid removed last year.

They want to do a CT of my belly. Cool, whatever.

Hospital - Day 8

Ed here.

We are still here in the hospital. Andre still gets feverish in the afternoons and he still has a massive headache and high BP. They sent him for a CT scan yesterday to look at his head and chest. They didn't see anything out of the ordinary. Today, it was an MRI to examine his head and neck. We'll let you know of the results as soon as we find out. Tomorrow, they'll do a spinal tap. I assume it's to check for potential infection and for the potential cause of the headaches.

Home is where the heart is

It's Thursday night which means tomorrow I get to go home. Home to my Andre.

He had a rough day today, not even 5 min of feeling "adequate" as we call it. Fever hasn't made its appearance yet but its ugly cousins, nausea and vomiting, did. I wish I was there with him because I know it comforts him when I lightly rub his back. Tomorrow, I get to do it. Tomorrow, I get to take care of my honey. Tomorrow, I'll be home.

Hospital - Day 6

Ed again. Andre's fever was the usual gone-and-back again deal. He was feeling "adequate" this morning when I called him but at around 6 PM, his 102 fever was back. I've been telling him to talk to his doctors if this fever is a potential drug reaction. We'll see if they'll look into it.

Andre had two visitors today. The first one was our girlfriend, S. The second one was R, Andre’s friend who lives in NYC. This completely took Andre by surprise. He flew into town to just see him. How incredible is that? The two visits made Andre happy so I’m happy too.

I have no title.

I took a walk thru the ward this evening before my shower. Normally I just do the walk and try to get it over with, but this evening I tried to understand what was happening around me.

The University of Washington Hospital is a brilliant facility. The cancer ward occupies the 7th and 8th floors of the east wing. The view from my 8th floor room is stellar, overlooking Lake Washington near the Montlake Cut. The days have been sunny, so I get to watch the boats navigate in the foreground with the mountains beyond. At night I can watch the cars navigate the bridge. This is a very nice, albeit expensive hotel room.

But that's the superficial side of the facility. It's easy to see that it's nicely designed, efficient, and effective.

There are people here too. This isn't a movie set. It's the people I saw this evening that impressed me most.

Every room is a private room. All patients are cancer patients. Thankfully not all the rooms are full. Each room has the patient's first name on the door. At first, I thought this was probably a choice they made for HIPAA and security, but it struck me that it actually humanizes the patient. And so I read: John, Fred, Antoinette, Susan, Christopher, and of course, Andre.

Many of the doors were open. It was easy to see what was going on in these rooms. What had gone on in these rooms for some time: Waiting, Pain, and Horror.

I returned to the room marked "Andre" and waited for the pain of their horrors to subside. Ed and I are so lucky.

60 minutes

I've got about an hour to blog. It's 11pm and they're not going to hook me up to the liquid leash until about midnight.

I feel better. Not great, but better. Here's the odd part. We've put me on a Fentanyl patch for pain and I take Tylenol every 4 hours, but unless I'm well enough to move about, I have a headache that would kill a mere mortal. It's BRUTAL.

And so, in spite of all the chemicals and high tech solutions we've applied, I got the bright idea to ask for a plastic bag, some ice cubes, and a wash cloth. My nurse understood the concept and delivered the perfect ice pack. It was placed on my forehead about an hour ago, and now I'm well enough to blog. No more fever of 102, no more headache.

Old tech works.

Hospital - Day 5

This is Ed, again. This means Andre is still not well enough to blog. You're probably missing his clever writing. I know I do.

Our morning started out fine. Andre had night sweats at about 2-3 AM which we thought was the sign that the fevers are over. I left the hospital at 5:45 AM, went to the house and was off to Vancouver half-an-hour later. While still commuting, I heard from Andre who was feeling a lot chipper like his usual self. This made me less guilty leaving him while he is still at the hospital. And so, I went about my work day.

I called him around 3:45 PM when I finally wrestled some time to grab lunch. Unlike that morning, he sounded bad. He said at about 1 PM, it's as if someone pushed the kill switch on his body (his motorcycle metaphor, not mine) and started feeling like rolled up doggie doodoo.

About 40 min ago, he called me to say he's going to bed. He sounded even worse. His temperature was back up to 102. They gave him the usual Tylenol and antibiotic transfusion. And now, I feel really worried. I told him that I'll drive back down but he didn't want me to. He misses me (and I miss him) but the hospital staff have been taking good care of him. I just told him to be a squeaky wheel and never hesitate to call the nurse--no more Mr. Macho. On that note, we said our "I love yous" and I let him go to sleep.

I'm still here at work but I wanted to blog to let you all know how he's doing. I know I owe some of you returned phone calls and email replies but I hope this will suffice. It's been a crazy day and it's not yet over.

Thank you all for keeping us in your thoughts (for those who are atheists) and prayers (for those of you who are spiritual). Keep those positive energy flowing our way. We appreciate them.

Hospital - Day 4

It's Monday morning and this is Ed. Yesterday was the same pattern: Andre's temperature was fine in the daytime but went up again to about 102. We've finally asked for something stronger than Tylenol to take care of his pain. Hopefully, they'll accede.

For today, he'll get 2 units of blood and a chest X-ray. His cultures are still negative so they still don't know the culprit. They told us that for most of these cases, they really only manage to get cultures from 20 percent of them. Most of the time, they just empirically determine which antibiotic to use and hope it works.

Watermelon

I'd like to postulate that watermelon might be the perfect food for cancer patients. Terribly juicy, mild flavor, easy to chew, easy to swallow. They're tasty hydration. The sugars are readily available, and the pulp is easily digested.

The slight astringency of watermelon also helps with a pasty mouth.

Guess what I had for dinner.

The docs are keeping me here until they find out what's making my fever go up and down. Let's face it, a 53 year old man with a fever of 102.2 is in trouble, and we couldn't get the fever to break for several hours. Naturally a fever of that magnitude, two days in a row, has worn me out to the point where blogging is the highlight of my day. Talk about your flu-like symptoms!

But, I'm still alive and kicking.

Hospital - Day 2

It's Saturday night and we're still here at the hospital. Andre woke up this morning feeling a lot better than yesterday. His temperature was normal when the doctor did her rounds this morning. She told us that Andre might get discharged tomorrow, Sunday. It's probably not going to happen.

Andre's temperature shot up to 102 about an hour ago. They will do another culture of his blood sample to see if they can detect any bacterial infection. The culture from last night was negative. Aside from the fever, his BP was high at 150 over 80. Additionally, he has not been eating. He tried a couple of slices of watermelons. He said it tasted wonderful doing down, horrible coming back up.

Hospital

This is Ed. It's past 11 PM, Friday and I'm here at the University of Washington Medical Center Hospital blogging. Andre is sleeping with the hydration fluids and antibiotics being delivered through his central line.

Andre was ordered to go to the hospital after his morning appointment at the SCCA because his temperature was at 101. Our lovely girlfriends, P & S, were kind enough to pick him up at the clinic, drop him off at the hospital and drive Andre's pickup truck home. Where was I when all this was happening? Across the border, worried sick. But I'm here with him now and we're glad to be together. I'll be spending the night here at the hospital. Hopefully, Andre will get some restful sleep even with my snoring and the nurse's constant interruption.

We'll keep you posted.

Graphic humility

I'm going to tell you what just happened less than half an hour ago. It exemplifies what cancer patients endure outside of what's on their treatment schedule. It's the result of chemo and radiation and 2 years of steroids. Don't read any more if you tend to be squeamish.

As you're aware, I've been having rather violent reactions from my lower GI tract since the radiation therapy last Friday. Well, I felt a sudden sense of urgency and rushed to the toilet.

When I pulled my underwear down, the tip of my penis was stuck to my briefs. I pulled the tip of my penis and a small part of my urethra off! Yes, I pulled off enough that it's bleeding drops of blood.

Yes, I have a band-aid covering the end of my penis now. Yes, I'll have to pull the band aid off every 20 minutes or so because of the hydration regimen they have me on. Yes, I'll have to worry about clotting, scabbing, and blockage until I see the docs again tomorrow. Yes, it hurts like hell. No, I'm not happy.

THIS is the kind of crap cancer patients put up with. The treatments are bad enough, but two years of steroids that thin the skin, a week of Foscarnet (a phosphoric acid derivative), and TBI (Total Body Irradiation) have conspired to create another medical issue.

I was warned today that Foscarnet can cause genital ulcers. Looks like I might be in line for one.

Why am I being so forthcoming? So that my readers will understand that it's not always the chemo and the transplants and the procedures. Lots of our issues come in the form of side effects that, like straw loaded on a camel's back, eventually burden us to the point of collapse.

I urge my readers who are caregivers to make sure your charges are able and willing to share unfortunate and potentially embarrassing details regarding their care. If, for example, something like this happened to a patient and the caregiver wasn't informed, a much worse condition might develop that could have been prevented.

It's my feeling that some patients might not be willing to tell a family member even though they'd easily tell a medical professional. Make sure everyone in the chain realizes that there's no reason to blush. It's a health issue.

Club Soda

I've been feeling like warmed over death all day long. Kidneys in pain, lack of energy, generally bad. Suzie called and I managed to con her into bringing me some club soda.

It seems to have relieved many of the upper GI issues I had. Now I just need to eat some dinner.

I had some excitement this evening. MAJOR raccoon fight under the deck behind the house. Looks like about a half dozen of them were involved. What I heard under the deck suggests that Ed's gonna need to look for a carcass this weekend.

I have a new infusion regimen that involves adding another liter+ to the equation. At 250cc/hr, that's another 5 hours a day on the damned pump. Yippee.

Andre and the dog.

"Ruff! Ruff! Ruff!", said the dog.
"Rough! Rough! Rough!", said Andre.

I'm going to bed.

I got a call.

The SCCA wants me to get an infusion onsite tonight at 7pm. Crap. I don't wanna! (But I will.)

The piper is ripping me off!

Paying the piper is terribly expensive right now. Holy moley do I feel bad. Muscle pain, bone pain, headache. It's like a really bad case of the flu with nausea, diarrhea, and chills.

The docs tell me its normal. They say it'll go away in 10 days.

I'm still ambulatory and am taking care of myself, but I'm not enjoying it. Food? Yuck....

Paying the piper.

Day two - Time to pay the piper.

Apparently the radiation hasn't been too good for my lower GI tract. Heck, it hasn't been too good for my upper GI either, come to think of it. I really don't feel like eating much, and when I do eat, my lower GI reacts with considerable urgency. I'm gonna lose weight like a supermodel again. I'm sorta glad I packed on a few megatons before the procedure.

I'm of the opinion that I'm over-hydrated. My kidneys are working overtime, my bladder is constantly full, I'm a bit bloated, and my lower GI is producing mostly water. Of course, this situation is preferable to dehydration, but it's uncomfortable and inconvenient.

On the pain and discomfort front, I'm having some bone pain, general malaise, and kidney pain. I have little energy.

Two Tylenol helps a lot.

Day One report

It's 11:30am of Day One. I got out of bed at about an hour ago. I'm a bit spent.

Last night was pretty rough with some nausea and considerable churning of my lower GI tract. Thankfully it seems to have resolved itself this morning. I'm still a bit tired due to a lack of good sleep last night.

I'm going to speak to the SCCA today about my hydration program. I don't think my bladder should be full every hour. There's another reason I didn't get much sleep last night.

How do I feel? Pretty good, just spent. I feel as I would have 5 years ago after a rough night. Nothing new.

Transplant details

Here are the transplant details:

Last Sunday, the donor started doing chemo to make his body produce excess bone marrow stem cells. Yesterday he was hooked up to an aphoresis machine with an IV in each arm. The machine pulled blood out of one arm, filtered it to separate the stem cells from his blood, and then returned most of his blood to his other arm. I estimate this procedure took 5 hours. So, chemo for 5 days and then hell for 5 hours. Amazing.

In my case, the chemo and prep started last Monday with Total Body Irradiation at 11am Friday morning. Basically they bombard your body laterally with radiation from head to toe over about a 20 minute period, then they literally turn the gurney around and do the same to the other side of your body as if you were a rotisserie chicken or shawarma/doner kabab. There was no "Shake and Bake" used. Apparently the effects of the radiation can be quite devastating for some patients. The techs commented that I performed in the 95th percentile because many people apparently pass out during the process. Yes, I felt something, but I can't exactly tell you if what I felt was psychological (knowledge that it was radiation emanating from the source of sound), or whether there was an actual physical sensation. It was quite subtle.

Anyway, I went to sleep during the process and wasn't pleased that they kept waking me up every 2 minutes to see if I was OK. It wasn't high stress for me. WAY easier than getting me to go into an MRI.

Ok, so I bailed from the radiation facility at about 12:30 and my buddies Suzie and Pam took me home for a couple of hours. Thanks Suzie and Pam!

Suzie picked me back up at a little after 2:30pm so I could check into the hospital for the transplant. I clocked in at almost exactly 3pm and watched TV until our friend Chao arrived for a visit. Chao's a good guy. (We talked about Ed a lot.)

Soon afterward, Ed arrived from Vancouver with smuggled Chinese food. Unfortunately it was from Panda Express (food court junk). Not to my appetite. I ordered hospital food. (The UW hospital has "room service" and a complete menu. Not bad, but slightly industrial.)

Chao had a dinner date with friends, so Ed and I watched TV for a few hours until about 11pm, whereupon it was announced that my transplant cells would arrive at midnight. Hmmm..... two hours earlier than previously advised.

Sure as heck, about 5 minutes before midnight, two bags of Sangria arrived, slightly chilled to 74F. They were individually hung from their "botas" and infused into my central line over the next three and three quarters hours.

Unfortunately, they checked on me every 15 minutes or so to make sure I wasn't having a reaction, and when they were finally done at about 4:30, Ed was snoring like a cartoon character. I didn't get much sleep last night and they allowed me to check out of the facility at noon today. I was there for only 21 hours.

Today has been a bit of a recovery day. People ask me how I feel and I have to say I'm surprisingly good, considering what everyone has told me I should feel like. Yes, I'm sleepy and slightly worn out, but overall I feel healthy enough.

Heck, we went out for dinner with friends tonight. I must feel adequate.

Was I freaked last night? My blood pressure didn't show any signs of stress. The BP was about 120/70 and my pulse was in the 68 range just before I took the bullet.

We'll see how it goes from here on out. Life goes on.

Still alive and kicking

It's just after nine in the morning. I've had breakfast and the docs have been to visit. Apparently I'm still alive. Everyone tells me I look good.

For what it's worth, I feel good too.

They're doing the paperwork to release me now.

Day Zero times two

Today is/was supposed to be another Day Zero.... a new birthday again after my November 30, 2007 birthday.

Now I get a new birthday, but it's not technically today. My cells will be infused at about 2am on Saturday, August 30, 2008.

Today's radiation sorta wore me out, but it took several hours for me to feel crashy. I'm ok now though. Ed is here with me and will photograph the process. We'll post a couple of them if they're not too graphic.

Tomorrow, August 29, 2008

Tomorrow is the big day. I've been prepping for this all week. Now's the time.

The bullet is gonna strike me.

I have a blood draw at 9am. This is followed by a prep for radiation. At 11am I get a TBI which means Total Body Irradiation. They'll stop when I glow in the dark like an old Timex.

Then they'll tell me when to check into the hospital sometime later in the day. Hopefully Ed will be down from Vancouver by then.

When the donor cells arrive from wherever they're flying in from, I'll take the bullet.

And then we wait. Tick tock tick.

24.2

I want to take a minute to thank my donor. As most of you are aware, somebody I don't know has just endured a week of chemotherapy and approximately four hours attached to the most bizarre machine on the planet on behalf of someone unknown. Me.

He's a 24.2 year old man from the US with Type A blood. If you're him. Thanks.

It amazes me that people are willing to do this kind of thing for a complete stranger. It amazes me more that someone who is only 24 would be familiar with the system, be prepared to join the registry, and follow thru with the procedure. The only thing I thought about when I was 24 was getting my pencil sharpened.

Thank you, thank you, thank you.

Reactionary

I took my dose of cyclosporine at 9am and then went for my infusion this morning. The allergic reaction returned. It wasn't as bad as yesterday morning but it was worse than last night.

Solution? Nothing specific. We're going to change the delivery vehicle/method from one type/brand to another type/brand. I'll return to the SCCA this evening and test the new stuff in their presence.

Ahh, the fun of drug allergies. They add so much to the cancer/chemo experience!

The challenge

We re-challenged my system last night with Cyclosporine. I took my evening dose at 6:30pm at the SCCA. There was still a reaction, but it was minor and not worth worrying over. I was exhausted when I got home.

I'm going to take my dose this morning prior to going to the SCCA for my third infusion of Fluderabine.

I'm starting to feel a bit run down. The strain seems cumulative.

Unfortunate event.

I had problems this morning. I took the my newest prescription, Cyclosporine, which is used to prevent transplant rejection. It's supposed to make my body more accepting of the transplanted cells.

Well, I had a systemic reaction to the drug. Big time. Thankfully I was in the center when it started.

50mg of Diphenhydramine thru my central line and it started to subside after almost an hour.

Ever take Benadryl? That's diphenhydramine. 50mg is equal to two regular tablets, except they injected them right into my bloodstream thru my central line. Holy krapp! It actually made me spaz out.......

Anyway, I have to go back tonite at 6:30 to retest/challenge the drug to see if I have the same reaction.

The two new drugs

Today I picked up two special drugs for the transplant. They are Cyclosporine and MMF (Mycophenolate Mofetil). Both of these drugs help prevent transplant rejection.

These drugs aren't used to keep me from getting GVHD. They're used to prevent my body from destroying the newly transplanted cells before those cells can do their job. Essentially, the drugs suppress my immune system.

For what it's worth, my co-pay for these drugs was $377. Yeah, really..... and Ed and I have very good insurance.

Anyway, I start the cyclosporine tomorrow and the MMF about 4 hours after my transplant. Taking the cyclosporine is a strange process. The pills are HUGE and I take 5 of them twice a day. That's 3 each of the 100mg and 2 each of the 25mg. Here's the odd part - I'm supposed to open their sealed foil containers and "let them breathe" for a few minutes. They have been variously described as smelling like "skunk" and by one less gracious individual "the inside of an elephant's ass". I guess I can make my own determination at 9am tomorrow morning.

Breakfast will consist of 2 fried eggs on toast with a side of skunky elephant ass. Yippee. Can I have some apricot jam with that?

Mini Allo Step One - Day One

The SCCA wasn't quite ready for me today. My infusion was supposed to start at 10 am and it actually started at 11:30. Something about the pharmacy being busy. Whatever, I have time.

My blood pressure was seriously elevated..... 150 over 100.... but that was probably due to stress.... My face and attitude were positive, but I was obviously a bit freaked out.

The whole process started with a Zofran, which is supposed to resolve nausea in chemo patients. Eventually my nurse donned her hazmat suit and started my infusion.

Hazmat suit? You're putting that stuff INSIDE me? Well, whatever.

And then they fed me lunch. Where is the intersection of Zofran, chemo, and lunch? Anyway, I ate the turkey sandwich, the pasta salad, and the apple sauce as if I were returning from fasting..... and I'm eating a braunschweiger/mustard/mayo sandwich right now.... Zofran and chemo seem to make me hungry.

Regardless, I took the step. I didn't chicken-out. The trigger has been pulled.

45 minutes

We start the transplant process in 45 minutes. I'm rapidly approaching the point of no return.

Dunno what I think about that any more.

18 hours

In a little under 18 hours, we pull the trigger on the mini-allo transplant. I'm supposed to arrive at the SCCA at 9am to begin the process. I'm oddly calm.

Ten thousand hits.

Oddly, I was my own 10,000th hit. Funny.

Chrazy Chemo!

I got my new chemo and meds instructions today from the transplant team. Holy Moley! This is gonna require the use of Microsoft Project and an Excel spreadsheet to get it right!

There are four pages of data for a total of 20 required meds and 9 optional meds. There are 5 time-points per day, and at each time-point I'm supposed to be taking something.

I have meds that should be taken on an empty stomach. I have meds that need to be taken with food. I have meds I can't have within 2 hours of eating dairy. I have meds I can't have with grapefruit.

The schedule has me taking pills at 7am on an empty stomach. Then I'm supposed to take more pills at 9am with food. Oddly, it also has me taking pills at 9pm on an empty stomach. Basically, my day has been divided into 5 segments with meals at 9am, 1pm, and 6pm. I'm only allowed to have dairy between the hours of 9am and noon.

Does this sound complicated? Heck yes! I guess the simplest method will be to set up a precise daily calendar and also eliminate all dairy from my diet. This is going to feel a bit like working on a production line.

In the words of the Beatles:

Woke up, got out of bed
Dragged a comb across my head
Found my way downstairs and drank a cup
And looking up, I noticed I was late

Found my coat and grabbed my hat
Made the bus in seconds flat
Found my way upstairs and had a smoke
Somebody spoke and I went into a dream

It's gonna be like this for a while.

Data review conference

Today I had a data review conference with the team from the SCCA. It was a review of consent forms as well as a recap of my health conditions with regard to the multiple myeloma and transplant.

My blood numbers are not all normal, but they're in acceptable ranges for treatment. CMV is under control. Everything is a "go" for Monday, August 25, 2008.

However, there were a couple of things that concern me:

1) According to an echocardiogram, I had a heart attack sometime this year. The doctor doesn't necessarily believe the EKG because there were no supporting symptoms I reported. Regardless, the EKG says I had one. Odd.

2) The donor has Type A blood. I have Type O blood. Apparently this won't be an issue with a mini-allo. There's a possibility my blood will eventually change to Type A. At least that's what Ed says.

3) The donor is a 9 point match (of 10). Our major mismatch is at one of the "DR" alleles. I do not produce an antibody for this allele so the doctor says this will increase my chances of having graft-v-host disease (GVHD). There is some benefit to a bit of GVHD as this is what combats the tumor, but excessive GVHD is what degrades the quality of life and/or kills the patient. Have the odds changed?

4) It was once reported that I had chomosome 13 exclusions. Now I'm being told that there are/were none. Was I lied to in the beginning, or have those chromosomes disappeared thru treatment?

5) There were apparently a high number of chromosomes without clonal matches. In other words, these chromosomes have no replicants. They exist independently in their abnormal state. There was no explanation as to why they exist.


Tomorrow I will be trained on my new chemo. Monday I start the process. I'm a bit anxious. Ed is slightly frantic.

5 days

Transplant chemo starts in 5 days. This Friday afternoon they'll teach me about my chemo and how to handle it. Ed comes down to Seattle on Friday night. We'll probably have dinner Saturday with friends. Then Ed will return to Vancouver on Sunday night. I'll be flying solo thru chemo and radiation that first week. I can probably get Suzie to help if I need her, but I don't have a precise schedule from the SCCA yet, so it's difficult to set-up.

My brother called me this evening. He realized he hadn't spoken to me in some time and wanted to catch up on the info I don't blog. We probably talked for 30 minutes or more.

One of the things we discussed during the phone call is the perception that reading this blog could give one a sense of knowing everything that goes on. Readers might get the impression that life is wonderful and relatively uncomplicated. They might think that Ed and I have everything worked out and we merely follow a well designed routine.

Nothing could be further from the truth. Yes, Ed and I have arranged our lives reasonably. We're intelligent guys and we're not into drama or complexity. However, between making our weekend commute between Seattle and Vancouver, shuttling "stuff" between our three locales (including our storage unit), and the fact that I live in an empty house during the week, there are a few minor issues with our daily existence. These issues cause stress. We miss one another and I'm bored as hell. I actually watched part of Oprah today.

Oh, you might remember we're trying to get me into Canada as a Permanent Resident. We're still following the procedure and making a little progress every week. You wouldn't believe some of the things they want from us, but it moves forward.

Healthwise, I think I mentioned I had a CMV infection in my esophagus and upper stomach. It's been treated with gancyclovir (350 mg/BID), a coating agent, and some topical lidocaine (I get to swallow it.) The result, as of this morning is a return to my 180# weight (fully clothed). Basically I've put on 10 kilos or 22# in thirty days. Doctors tell me not to slow down because I'll need the extra weight soon. Hmmmmmmm....... what are they really saying?

Oh, about the house. Zillow.com shows the house value at $146,000 more than the asking price. I haven't had a single bite yet. I haven't even had a rude lowball. Of course, good old Zillow also says my neighbor's house is valued at $859,000 which is only $370,000 more than he was asking for it two weeks ago. Real estate agents are insane and the market is their spawn.

So, that's how our life goes until next week. Then all the rules will change. Well, maybe. Maybe not.

Ten days of freedom

I'm in Vancouver today. I came up yesterday evening right after my last appointment at the SCCA. Ed and I are going to spend the next couple of days enjoying the city and finishing the last 1% of moving him in here. According to the schedule that's been presented to me, this is probably the last time I'll be in Vancouver for quite some time.

14 Days

In 14 days I start the chemical process that will prepare me for irradiation and transplant.

That's 14 days until the firing squad pulls the trigger and the firing pin drops. 15 days until the primer ignites the charge. 16 days until the charge propels the bullet down the barrel and across the space between the shooter and myself. 17 days until the bullet strikes me.

Then we have 90 - 120 days for us to figure out what the bullet has done.

Oddly, as the time approaches, I've become less chatty. Less introspective. Less forthcoming. Even less involved at some level. Maybe I'm in denial. Maybe I'm just accepting the enormity of the gamble. Maybe I'm just ready to move forward, wherever that may be.

Ed and I are both scared. Certainly no one can blame us. We know the stats. We know the possibilities. We understand the biology. We've discussed it. We've cried over it too often.

Don't worry if I'm a bit quiet for the next two weeks. It seems to be where I'm headed.

Visa

Ed's visa for entry into the US expired last night at midnight. Today he had an appointment with the US Consulate in Vancouver, BC for a new visa that would allow him to take care of me during the upcoming transplant and continue his work with the University of Washington.

It was granted, in spite of the determination that "You have strong family ties in the US", which is code for "We're concerned that you'll go across the border and disappear into the woodwork to become an illegal alien".

Yeah, he's been playing the visa game for 10 years and suddenly he's gonna become an illegal alien in the US. Maybe he can push a tamale cart in LA... You know, take one of those jobs the arch conservatives think the little brown people are stealing from "Real Americans". Somehow I don't think that's a worry.

Anyway, the interesting part of this whole process is that the only family Ed listed on his application was his husband, little old me. When did the US Consulate start recognizing me as family? Do they worry I'm gonna fund his tamale cart and hide him in the woodwork?

Hmmmm.... Now I have to Google "tamale cart". I might need to set aside some operating capital.

(Note to Homeland Security: File this under "sarcasm", or "humor", or "sarcastic humor.)

The new official date

The new official date for my transplant is August 29th. We'll have to see if it slides any more.

More delays

Looks like the transplant won't start until the last week in August now. It makes sense, but part of me just wants to move on.

Frustrated

I just got a call from the SCCA telling me my potassium levels were even lower today than they were yesterday or the day before. This, after buying a prescribed potassium supplement that wasn't covered by my insurance.... at a cost of $75 for a bunch of little packets of fruit flavored stuff.

So now I need to start using an infusion pump again 8 hours a day. Dammit! I hate that thing! They're also giving me a new scrip for some other basic mineral. More pills. More set-up time every day. More crap to carry around.

Somehow I have to time the pump somewhere between the other two infusions I have to give myself every day, manage my 4 seperate blocks of drug dosing, and let the SCCA use the lines and treat me somewhere in that schedule.

Yeah, I'm whining, but this is getting to be WORK.

About the delay (with other updates)

I asked for a ballpark, wild guess on how long these little viral problems would delay the game. I was told "Two weeks?" with the question mark clearly stated. I'm wagering it pushes into September.

My taste buds and sense of smell have started working again.

On the drug front, the changes are drastic. Ed was diligent and created a completely new drug list/spreadsheet for me because it's insane now.

I have a drug I have to take before I eat (so I can eat). Cherry flavor!
I have a drug I can take while I eat (so I can eat.) Yucky but effective.
I have a drug I must take with food.
I have drugs I should take with food.
I have drugs I can't take with dairy.
I have drugs I have to take on an empty stomach.
I have drugs I infuse twice daily thru my central line.

So I have a group of drugs that are food related in one place, one of those neat little plastic boxes that say "morning, noon, evening, bedtime" or somesuch, and the fridge has these cool little grenades that administer their magic over a one hour period directly into my bloodstream. One is hooked up right now and it's time to disconnect. Twist, throw away, have a nice day.

Oh, and one of the new drugs I'm supposed to take just before I go to bed is supposed to make people have nightmares and sleep-walk. In fact, they "suggest" that it be taken just before bed because sleep supposedly reduces the effects one would feel if one were awake. This is my first night on the stuff. Looking forward to it! (I made Ed hide the gun and ammo in two different places.)

So, time to change "normal" again.

Delay of game!

It would appear that going off dexamethasone early was a good thing to do. Seems the dex was hiding a couple of problems the SCCA thinks we should fix before we move forward with the mini-allo transplant.

Remember, dex was the drug that hid the intestinal flare-up that required removal of my sigmoid colon. Wonderful drug, dex!

This time it seems that my loss of weight, loss of appetite, and esophageal pain is caused by a serious flare-up of CMV (cytomegalovirus). It also suppressed the effects of a rapid spread of another viral affliction. Neither of these issues have ever shown their ugly heads before, but I'm told they're not unusual post transplant, owing to the patient's incredibly low immune response.

Anyway, they're treating me for CMV and they're considering surgery for the other issue.

Point is, treatment is making me feel better, and going off the dex early allowed us to find a couple of roadblocks that might have seriously impaired the mini-allo.

Listen to your body. Sometimes doctors can't hear that little voice inside you.

I'm OK.

My brother has indicated that when there are no posts, things appear to be going badly. There's some truth in that.

Today, they sprung a 6 hour infusion on me. It couldn't start until 4pm and I'd been there for a while. I got home a little after 10pm. I pulled an 11 hour day for them.

Yesterday, with all the new tests and things they threw at me, I pulled a 13 hour day. I didn't feel good when I started and I was completely spent when I left.

Prior days were just tough on me with the dex crash. I haven't been too communicative, but I can assure you I'm OK.

Oh, they took 17 vials of blood from me today. It's Thursday and they've taken a total of 58 vials this week. Fifty Eight.

There seems to be a problem

I just got a call from the SCCA. They need me to show up at 7:45 tomorrow morning for a blood type test so they can give me 2 units of blood in the afternoon.

It's actually sorta funny because they took 14 vials of blood from me today and something like 12 yesterday. I joked with the nurse that if I started running low, I was gonna blame him.

Mixed bag

I awoke this morning feeling better than I have in almost a week. One could say I was virtually human. Only a few things hurt and my brain was relatively fogless.

At 10:00am they injected two "exposure" tests into my forearms. In the next 24 hours, these tests will either do nothing or flare up and itch. At 12:30pm the nice people at the SCCA did a bilateral bone marrow sampling with only local anesthetic.

One would think I would be used to them by now. Nope! They're still the most painful thing I've ever done in my life.

And then, about 30 minutes ago, there was a medical delivery person at my front door (upstairs from where I was). I decided to go out the garage door and invite him to come down and do the delivery right next to his car. I tripped as I approached the bottom of the steps. My feet never got back under me and I hit the steps hands first. My right hand slid across the steps so I have a bit of road-rash at the base of my palm. I'm guessing that both hands will be bruised tomorrow.

The funny thing is, I still feel pretty decent.

Weekend info

Ed's just driven off back to Vancouver. I'll be here in the house for a week. He'll be in the apartment for the week.

The SCCA has me booked about 5 hours a day at their facility. Tomorrow involves a bone marrow sample (bilateral) and a bunch of inspections and minor procedures before it.

Dex-wise, today's been my best day in the crash. To some extent my body is trying to be normal. Thursday was the bottom of the crash and I've been swimming for the surface slowly ever since. I expect to awaken tomorrow morning relatively fresh.

I've even started to eat a bit and the esophageal pain is less today than yesterday.

A simple sneeze

I sneezed this morning. This means the dex is leaving and it's nor supressing every normal human reaction to the planet. I thought it was kinda cool!

The real deal

I was talking to Ed and arrived at what I think is a perfect parallel to what's happening with the Allo program.

I've agreed to take a bullet.

I've agreed to be inspected, prepped, and educated on how to stand in front of a firing squad. I'm told the ammo is good and the firearm is excellent. I'm also told that the entire squad is one of the most qualified in the US.

But I'm gonna take a bullet. Literally. On August 6th, they're gonna shoot me. They hope not to kill me with the bullet. They hope it just grazes the skin and removes the bad stuff with flying lead. I'm gonna take a bullet.

I have no control over what speeds out the barrel. I have no idea where it will strike. I'm just gonna get shot.

In the words of my youth. HEAVY.

Rough rough day.

I'm close to the bottom of the dex crash. By that, I mean that EVERYTHING hurts like hell and I'm oozing blood.

Sorry, that's not a pretty pic, but it's the truth.

Every orifice in my body is exuding a continuous trickle of pink...... blood in urine, nasal secretions, etc. I won't go into details, but this is one of the more severe phases of dex or prednisone elimination. I've seen it before and I expected it, just not today.

Today was the day I entered the SCCA's mini allogeneic program. At 11 am I signed paperwork and did bloodwork for the next phase of life..... This is a big step.

Anyway, from 11 until about 4, they asked, talked, poked, prodded and looked in places we won't discuss here.

They promise to address the esophageal pain, the loss of appetite and weight, and some other significant issues. I have appointments starting at 11 tomorrow. I'm booked on August 18, 21, 22, 23, and 24. That's as far as we have it scheduled.

The new plan is to actually do the allo on Aug 6th and 7th, but that's subject to the donor's continued suitability. We won't know it's gonna happen until the secret sauce shows up at the hospital.... Apparently sometime close to midnight of the 6th.

And then I'll be their slave for 100 more days. At least 3 days a week. Blood tests and inspections.

Anyway, that's todays story. Taking 1000 mg of tylenol and feeling decent now. Way better for me than the cherry flavored hydrocodone they supply cheaply.

Food and weight

Food is absolutely disgusting. I actually feel better when my stomach is growling than when I eat. It's just SO painful going down and everything tastes exactly the same sort of bad.

I got up this morning and weighed myself. I also weighed myself at the SCCA today during my pamidronate infusion.

One hundred fifty four pounds is not good. On July 6, I weighed 164#. Ten days, ten pounds.

I wonder if I can sell this stuff.

Improvement

My brain was connected today. My body functioned.

I got up this morning and looked at a fresh load of dexamethasone in my meds package. I left the little green pills in the case.

Today hurt quite a bit. Bone and kidney pain, but certainly better than Sat and Sun. The crash is tolerable. I seem to be recovering from the bottom.

Will advise.

Massive crash.

The vegetable plate has wandered down to a major chemo crash.

I'm gonna let the slide continue. I'm goin' all the way to catfish.

My body will recuperate and that's the objective. I need my own body to move into the next phase of this little process. I can't rely on dex in the next phase. I can only rely on natural physical actions to pass thru the eye of this needle.

I'm only effective about 15 minutes every 2 hours and it hurts.

Oh, while Ed and I were finishing the TV/Stereo installation, I let my shoulder muscles go for a second.... I pulled every tendon in my shoulder. Done it before, know what I did. Feel like every other time I've done it. Stupid, but it's done now. I'll just have to drive differently for a while. Left arm is pretty much useless if it's in front of me.

Pretty bad when I was only handling 50#..... That's how bad it's gotten. 50 pounds and I blow out my shoulder. Gotta learn.

Vegetable plate

The steroids have been bad to me. Dr. B. said to continue "If you can stand them."

I can't stand them any more. I've been a staggering drunk for the last couple of days. I can't feel my feet or legs. My muscles are useless. My fingers are somewhere in outer space. I'm a zombie.

In fact, I'm worse. I'm a vegetable plate.

My next dose of dex will disappear. I'll crash like an A300 and then return to reality. I'll become myself again.

In just 6 days they put me on a program for transplant anyway. Removing two loads of dex isn't going to make that part any easier or harder.

I lied. It will make the next steps easier. I'll be be human and myself again.

My doctors can't fire me because I can't stand their tortures. They also can't fire me because I make my own decisions about my health care. I'll let you know how it goes.

Exhausted

Pills, projects, moving, wedding, moving, moving, moving. We arrived in Vancouver, parked the cars, and went to bed at 1 AM today.

I'm exhausted. This morning I woke up at about 10:30. I was sorta refreshed but I knew I was still tired deep inside. I puttered around the house and took a surprise nap in front of the TV in the afternoon.

I have to learn to respect my physical limits.

Anyway, it's 10:30ish PM. Gonna take my night meds, take a shower, dress my Hickman and go to bed. I have an appointment tomorrow morning about the suite here in Vancouver.

Tomorrow will be at my own pace after the walk-thru. I'm slowing down a bit.

Alternate wedding pic site.

Apparently our wedding pics are far easier to view here.

http://smg.photobucket.com/albums/v448/outrace/Wedding/?start=all

Wedding and pics.

Our wedding pics can be seen at:

http://liberated-man.blogspot.com

Rough couple of days.

Ed and I have been shuffling goods back and forth. Lots of it is pretty heavy. I'm a bit worn out.

I recognized something this evening. The dex makes me not want to eat. I can't smell. I can't taste. Food hurts going down (esophageal flare-up because of the pills). And so, since I've been back on dex, basically around the time of the road trip, I haven't enjoyed eating at all. There is a consequence to this.

I only weigh 164# and I have a big belly. I've lost LOTS of muscle mass in my legs and arms. Bad form, bad for me.

I've started a high protein diet. I'll couple it with a continued exercise program. Obviously I've been exercising a bit much over the last two weeks with the move, but I have to concentrate on certain muscle groups that really need help. I need to be in some decent sort of shape when they start me on the mini-allo (allogeneic) program this month.

Off to bed.

To answer:

To answer the comments and concerns:

Dr. A and Dr B. communicate quite well. Dr A is one of those docs who documents everything and suggests lots in his common dictation. (Keith and I know somebody like that!)

The docs and I have done the cell phone meeting thing, and my brainiac secretary (Hubby Ed) keeps precise medical notes and formulates derivatives of conversations into logical objectives.

Communication, we got.

But a patient's individual reaction in his environmtent might cause symptoms the docs might not expect. It's still up to the patient to address them with some logic. I'm putting too much physical stress on my body and I'm taking the wrong drugs on which to do it.

Did I mention that I can't keep my fingernails clean because the nail beds bleed? I don't think it'd be cool to show up to my wedding with a zombie brain AND body.

The dex makes the skin as thin as a 90 year old's. The warf,coum,hep makes the blood so thin it just passes thru the skin. Can't make the skin thicker. Gotta increase the blood viscosity.

Sorta like putting straight 40 weight in an old car to reduce the drip in the driveway. This old '55 leaks a bit when you drive me hard.



Picture and vehicle courtesy hampsteadautobody.com

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.
(4850)

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.