Tuesday, September 30, 2008

Good results, but LIVID

First, the good news. The results of the bone marrow biopsy were excellent. Apparently the marrow is showing 'negative' for malignancies and the marrow cells are 100% donor cells. It looks like it's going to work. The next 90 days will tell the tale of GVHD and side effects.

But I actually fired my doctor today. Yup, asked her to stop talking and leave the room. No, I wasn't on steroids.

See, I'm perfectly honest and candid with my docs. I tell them everything that goes on so that they'll have answers and reasons in case something happens. So I told them about my little escape to Vancouver on Sunday. I told them I forgot my infusion tubing. I admitted to playing hookie.

And the doctor went OFF! Their rules say I'm supposed to be within 30 minutes of their facility at all times. Their rules say I'm supposed to have a full time caregiver at my side at all times. Yes, they're talking about having someone sit beside me, hovering like a bat in case I fall down going to the bathroom. That's stupid.

And then she said the classic words, "If we'd known you weren't going to follow the rules precisely, we wouldn't have done the transplant."

This translates to, "If we'd known you wouldn't let us own you, we would have let you die of your disease."

Sounds like she's trying to cover a liability problem with another liability problem.

The conversation digressed into a random ramble about how I was putting the general public in danger's way by "zipping around town on my motorcycle" (obvious prejudice). There was much more interest in having me drive my 2 ton truck around in traffic, as if that would be safer for the masses.

That's when I told her I was happy she was going off rotation and that she could leave. Her response was, "I have a right to be here with one of my employees."

So I explained that I'd be happy to leave, as her lectures would not be necessary any longer. She would not win, she could not win, and neither she nor the facility could fire me. I went so far as to say, "You're not my mother."

Hell, she even said something about "all we do for you" as if this were a pro bono charity event.

No, it was not a good interaction, but how ABSOLUTELY PIOUS can a doctor be? Sanctimonious witch!

Quite frankly, Doctor D has always been a cold, stiff, impersonal clinician since the day Ed and I met her. Neither of us like her. She doesn't show up for team appointments. When she does, her general demeanor is one of superiority and aloofness. She's off-putting. Now I know she's an insufferable nag.

Interacting with this woman raised my blood pressure and actually gave me hand tremors. She's not good for a patient's health.

Monday, September 29, 2008

Stupidity and adventure

As previously told, Ed and I went up to Vancouver yesterday. Upon arrival I discovered I'd forgotten part of the pump mechanism that infuses my magnesium, so I missed my mag infusion yesterday. I also goofed up my prednisone dosing for today, only bringing half of what I was supposed to take.

I woke up late today and loaded the FJR for the ride back down to Seattle. I dosed as much prednisone as I had, hydrated myself, and rode the beast back home.

Effects: Muscle cramps in my hands on occasion. I guess the mag infusion works. I dosed as soon as I got home and feel much better. Oh, and I did my prednisone dose correctly too, just a few hours later than scheduled.

Crossing the border this time? 40 minute wait for the unwashed masses. Zero minute wait for my NEXUS card. Nobody in line.

The rest of the ride was uneventful. I remembered that beef jerky and Mountain Dew are a complete meal.

Sunday, September 28, 2008

Tale of two countries

It's Sunday and the weather has been wonderful all day. Tomorrow is supposed to verge on 'spectacular' at 77F. So, Ed and I drove the roller skate up to Vancouver from Seattle so I could ride the motorcycle back down to Seattle tomorrow. I have a few things to do on the bike and they're not being accomplished while I'm in Seattle alone.

Here's the strange part.

Ed was behind the wheel as we crossed the border into Canada. Ed held his Filipino passport with his Canadian Permanent Resident Card sticking out the top. He also held my US passport with my Nexus (priority travel) card sticking out the top.

Here's how the transaction went:

Guard: "Where do you live?"
Ed: "Seattle. Well, he's in Seattle and I'm in Vancouver."
Guard: "What's the relationship between you two."
Ed: "Uh, we're husbands."
Me (to Ed): "We're married also works."
Guard: "Well, there is no established terminology at this point, is there."
Me: "I guess you're right."
Guard: "Thank you gentlemen, have a nice day."
Ed: "But you never took our paperwork."
Guard: "I'm satisfied. Have a nice day."

No, we never handed the guard our passports or cards. Since this was at the new Peace Arch passageway, were they using magic card reader technology off the cards to verify without actual contact?

Yeah, crossing the border without getting a proctologist involved...... strange. Big brother IS watching.

Friday, September 26, 2008

Eat like a teen, drink like a fish.

My visit to the SCCA was interesting today.

1) I need to increase my oral phosphorus intake. (Potatoes and Neutra-Phos?).
2) They're changing my magnesium infusion because I'm still wasting mag.
3) My prednisone (steroid) taper will happen quickly, starting this weekend.
4) They're doubling my BP med dosage.
5) My antiviral dose needs to increase by 50%.
6) I need to go back on Bactrim on M and Tu only.
7) My FK-506 (Tacrolimus) level is too high so I need to back it off to 4mg instead of 4.5mg.

And finally..... can I get a drumroll please..... I've lost 3 kilograms in 3 days. For the Yanks who read me, that's 2.2 pounds per day.

Yeah, that's bad. I know I put on a couple of extra pounds before the transplant. I know I've been retaining water because of the steroids. I know there are gonna be issues. BUT, I shouldn't be retaining water AND losing weight at this rate.

So my instructions are to keep my stomach full all the time and drink enough fluids to float my eyeballs. Already drinking too many sugary drinks.... Mountain Dew mostly. Will have to switch to low sodium club soda. Water is insanely bitter while on the steroids.

Hmmmmmm..... potatoes..... Solve the calorie/starch/digestibility/phosphorus problem. Gotta get some protein in there somehow..... I like 'cow juice', but it's prohibited within certain timeframes because of a pill interaction. Meat and potatoes...... I think I can handle it.

Eating and dosing is becoming a full time job.

Thursday, September 25, 2008

The English Language

I got the following comment from Roobeedoo yesterday. It was about my use of the word "PANTS".

"Boot camp, that's what you need! By the way "pants" are "underpants" over here, and FL has every intention not to go commando (so no boot camp for him?!)"

Clearly, the British don't know how to use the English language. As my logical source, I cite the fact that the US established the standard for English conversation in Hollywood, California in about 1932 with some little things they called "movies". (The British still use some other word.... sounds like FILLUMS or something.)

But back to the subject at hand:

You see, the word "under" is a modifier of the word "pants". Therefore, in common British use "pants" and "underpants" are diametrically opposed nouns. How can one have "underpants" under your "underpants" if one of them becomes the "interpants" and one of them is clearly the "underpant". Are both of them "underpants" if one has on "pants"? Does this eliminate the "interpant" issue and simply make one "warm"?

Or does this mean that "pants" are underpants, but breeches are overpants? Can't one say overpants and underpants? If pants are underpants, how is that possible if one doesn't have any pants under which one can keep one's underpants?

Is anyone else seeing where this is going? It's all so confusing. No wonder there are kilts.

(Completely tongue in cheek, just in case the British don't "get it".) (Come to think of it, "get it" probably means something besides understand in Britain.)

Good night.


I feel good, but I'm deteriorating a bit from the inside. Muscle tone is going away, flexibility is disappearing, desire for activity wanes.

So, tomorrow I need to get off my butt and get moving. I DON'T wanna be in the condition I was previously..... weak legs, lethargic, off......

Yeah, I've been doing intellectual things..... that's the excuse.....

Tomorrow is "Into the garage, and beyond!"

Wednesday, September 24, 2008

Moon walk

AKA - going backward in a forward way.

I got two phone calls today. The first was from a case worker with my insurance company. She called to let me know what benefits were available to me that I hadn't used so far. She also made herself available to me for any future issues regarding coverage. I'd be suspicious, but she's already gotten me coverage on a couple of previously denied claims. Seems legit. Seems good. They seem to be interested in rapid recovery.

The second call was the strange one. The SCCA called to let me know they were changing my drugs BACK to the pre-transplant formulations and levels. This means I'll spend 5 hours LESS time on the infusion pump, can eliminate a minor rash I've developed, and take two pills a day instead. I can't think of a single reason they might reverse the drug formulations if I was doing badly. They'd only reverse themselves if I was doing well. Hmmmm..... Waiting for the other shoe to drop.

More questions to ask on Friday. Hopefully more answers on Monday or Tuesday.

Monday, September 22, 2008


I had blood tests at the crack of dawn this morning. I was gone from the house for less than an hour for the blood draw, then came back home and slept for another 3 hours because the steroids had put me off my schedule so badly.

We also had a team appointment at 2:45 today. Team appointments are with a nurse, my assigned PA, and whichever doctor is currently on rounds for the month. Since the docs rotate on a 30 day basis, I've been thru a few doc in the two years we've been playing this game. However, this one was new to me. I like her. She listens well, seems to know what the heck she's talking about, and is generally communicative. I prefer to have a doc who actually talks instead of simply trying to tell you why you need to follow their directives.

So we talked about some of the new drugs and their side effects. We talked about minor changes in the current drug plan, and we talked about the future.

To tell you the truth, now that the Cyclosporine problem is gone, I feel good - very good. If this is the worst I can expect for my future, it's not too bad. The simple truth is that I know I can go UP from here, with better physical fitness and improved mental acuity. It's just gonna take a little work and some time.

How well am I doing right now? I've been given a small holiday from the center. I have no appointments on T, W, and Th. A reprieve from the governor, as it were.

But FRIDAY, oh what a day that will be. Blood draw at 8:30 AM, bone marrow aspiration at 9:00 AM, then a team visit at 10:45 AM.

See, Friday is day 28. Tradition dictates they should find out if any of this stuff worked. Am I engrafting? If I'm engrafting, is it the donor cells that are engrafting, or is it my old cells? Is the tumor load being reduced? In short, have there been any benefits derived from the million + dollars that have been burned in the "Andre Project"?

Friday is the tell-all day. Of course, we won't know the answers on Friday, we'll simply have the materials available for testing...... and we'll get the verdict sometime next week. Time will tell.

Sunday, September 21, 2008

Home again, home again.......

I spent last night in my own bed, disconnected from machines and beeping. Nobody took my vital signs every 4 hours. Nobody needed to measure my outputs every time I felt the urge. Nobody made me eat my meals at their convenience. Nobody left the lights on when they left.

The best part of all? I got to sleep next to my guy. I got to listen to him snore in his usual way. I got to hear him say "I love you" in his usual way every time I got back from dropping a penny last night. He doesn't even know he does it.

Well, I guess he does now....... :)

Thursday, September 18, 2008

Cyclosporine reaction.

THIS seemed to elude them for days.

Three wonderful things

1) Finding out the source of your fevers.
2) Eliminating the source.
3) Feeling like 0.5 million bucks.

Guess what? I'm SERIOUSLY allergic to Cyclosporine. Yeah, 103F fever level allergic! Having the hospital run out of Cyclosporine was a blessing in disguise. I got switched to something else and BINGO!, no more fevers.

So I've been taken off quarantine and asked to start eating regular food so I can go home!

The bad side? I'm on 40mg of Prednisone per day for the next 10 days. I'm also on two other steroids "forever". Remember the cookie addiction from earlier this year? Well, run right out and buy stock in Keebler because my insurance will be buying them for me for the next decade!

Anyway, now that I'm on Prednisone, I hope to have the hospital repainted by tomorrow. Good night.

Wednesday, September 17, 2008

Something I forgot to tell you.

The "Feud of the Doctors" happened the day before yesterday. I've lost track of time.

The day before yesterday is also when they decided they wanted to do a pulmonary scope / pulmonary wash. For those of you who may not come too quickly to the inherent cruelty of something called a pulmonary wash: the whole process began with a complex arrangement of video cameras, VCRs, and endoscopes.

Next step? They put COCAINE up my nose. Yup. Co-freaking-caine.

Then they stuck a fiber optic scope up my nose, down the back of my throat, straight past the vocal cords (did I mention I wasn't allowed to speak), and INTO MY FREAKING LUNGS. Whereupon they took some lovely videos and SPRAYED WATER INTO MY LUNGS while simultaneously vacuuming the water out.

"You may have a slight urge to cough." What an understatement! Slight urge? Actually, I had a slight urge to meet Ariel, the Little Mermaid! I've never watched myself drown before!

And so, I did what I always do when I'm in a high stress situation. I lowered my blood pressure and went to sleep.

Something Ed left out

Last night, when the battle of the Doctors was happening in my room, the MD (who I really think was just a PA), asked Ed who he was. Ed said, "I'm Ed." MD/PA goofus asked, "And you are?". Ed said, "I'm his huband."

Goofus really didn't know what to say. He murmured "Oh" and left the room.

I so wanted to hear Ed say something rude like, "...and unlike you, I actually know something about biology, dosing, and reactions."

Monday, September 15, 2008

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.

Sunday, September 14, 2008

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.

Saturday, September 13, 2008

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.

Friday, September 12, 2008

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.

Thursday, September 11, 2008

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.

Wednesday, September 10, 2008

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.

Tuesday, September 09, 2008

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.

Monday, September 08, 2008

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.

Sunday, September 07, 2008


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.

Saturday, September 06, 2008

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.

Friday, September 05, 2008


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.

Thursday, September 04, 2008

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.

Wednesday, September 03, 2008

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.

Tuesday, September 02, 2008

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....

Monday, September 01, 2008

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.