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