Monday, July 16, 2007

Was at the CTC for quite a while. Leg pain got worse. Was given a morphine push which knocked the edge off but did not eliminate the pain. It would wane then come back. I was a puddle, totally overcome with the pain at times, and kept trying to find a position in one of the recliners where I could ease up the pain enough to breathe without panting. My BP was up because of the pain too which gave me a headache, while on morphine no less. Ugly afternoon.

I think they took about a dozen tubes of blood for tests. Beyond a CBC and Electrolyte check, they're doing broad sweeps to see the condition of my immune system (since I'm still having fevers), arthritis indicators, inflammation flags, sed rate, etc. I lost track of all the test codes they were tossing about.

Also scheduling a bone scan, entire skeleton. Never had that before but I gather it's akin to a CT scan or MRI. Something is definitely out of whack and it's whacking me pretty hard. If we get no useful info from the blood tests and/or bone scan, the plan is to leave out the oxaliplatin on my next treatment (7/25) and just do the 5FU, a little process of elimination test. My previous experience with 5FU didn't give me these troubles. If oxaliplatin turns out to be the culprit, we'll finish off my last three treatments without it. The agony is outweighing the possible benefit.

Because I'd had the morphine only about two hours before I was released for the day, I called spouse to come fetch me home. I was quite lucid, but worn out and afraid I might fall asleep or pass out on the highway if I drove.

Got a new Rx for oxycodone and have pretty much been given permission to take as much as I need to survive the pain until we find the root cause of all this mess.

Expanding my repertoire. Hip pain now radiating down the backs of both legs, thighs to ankles. Lortabs concurrent with Advils are handling the hips, but doing nothing for the legs. Cannot stand or walk for more than a few minutes. The legs ache while sitting too unless I pull my knees up tight, usually with heating pad wedged between thighs and calves.

Like I said, bundle of shifting side effects. Just when I think I can manage what I have, a new challenge arises. I have to go to the CTC to get my port deaccessed today, so I'll have a chat about this new thing with them while at it. Could be a long trip there and back. Haven't tried sitting in the car with this new deal. Need a new script for hydrocodone or oxycodone too (ala Lortab), using it up faster since I should only use the Advil now when I am desperate (which was most of yesterday and so far today). I really don't like using the Lortabs. I tend to fall in and out of sleep alot. Can't even enjoy the painlessness.

Am I having fun yet? I swear, no cancer left, just chemo eating me up. Wish I could prove it and quit.

Three more. Just three more. Only three more.

Sunday, July 15, 2007

I woke up feeling great around 2am. hahahaha That's funny. But hey, I'll take it!

Saturday, July 14, 2007

6:50pm, chills started. Escalated so fast, it was difficult to take temp and ferret out some Tylenol. Temp was only 99.7 but obviously shooting up fast because the ordinary fevers don't make themselves known until 100+ with only mild dizziness. Got the Tylenol down. Was short of breath, panting, because the shivers go all through me and all the way out to hands and feet. Coughing on purpose seemed to help me catch more air. Quaked for about another 20 mins before it started to subside and I immediately fell asleep, pretty much from exhaustion. Woke up at 8:03pm due to spouse calling to say he was on his way out of LC and did I need anything. I was hot and sweating, thus fever had broken. Temp was 101.9 and falling slowly as usual, ala still 100.5 at 8:55pm.

Friday, July 13, 2007

Mixed results, ie, good and bad appointment.

Electrolytes are fine except for a bit low on total proteins especially albumin. Recommendation includes more red meat! which suits the hell outta me. I love beef. Bringing up my albumin count can help boost or at least maintain my RBCs.

Hip Pain is back to 'unknown origin'. Highly annoying. The bone marrow to RBC theory fades as time elapses since last shot to boost that production. Doctor actually suggested today that maybe I've developed arthritis. I think, and said, this is a bullshit theory. I suddenly developed severe arthritis pain coincidental to the chemo? Yeah, sure, riiiight. I am not buying it.

Of all my symptoms, this is the one that troubles me most. I am sometimes nearly immobilized, and I am certainly limited all the time. The pain is mitigated with pain relievers, but never completely gone. I am annoyed with the problem and no real firm diagnosis nor resolution. The doctor also backed off the Advil/ibuprofen as a pain reliever, concerned that it may promote GI bleeding and impede platelet function, if not counts. She recommended using the Lortab only.

I cannot back off the Advil. As it is, I am now having to boost that with the Lortab5 sometimes and I don't want to get into heavy Lortab use as hydrocodone can be addictive plus it makes me groggy. Overall, this issue is a mongolian clusterfuck. For myself and my quality of life, I have to do what I have to do to get as much function as possible, despite today's twisted backtracking by the 'medical professional'.

CT Scan Results were glowing, if unhelpful for diagnosis, so that's both good and bad. My lungs are clear, as well as liver, spleen, pancreas and adrenal glands. I have a gallstone, which I knew about before. Kidneys are symmetrical with no evidence of any abnormalities. No evidence of abdominal abcess, no pelvic mass or adenopathy. Appendix okay even. Rules out a lot - good. Offers no clues - bad.

RBCs way up as HGB went from 7 to 11.2 after 4 units of PRBCs. Obviously good. I haven't had the enrgy boost I expected but then I have the hips sucking a lot of energy I might have otherwise.

Since my RBCs/HGB was good, I got to take Chemo #5!! Exceedingly good news. The delay being only two days allows me to keep my schedule intact. Only 3 more threatments to go. #6 scheduled for 7/25. --- Also got my Calcium and Magnesium to mitigate Oxaliplatin's cold effects. YAY

Added note: I forgot to take the anti-nausea meds on Friday night but suffered no nausea any way. YAY Took them early Saturday AM as soon as I rembembered, just in case, but it seems that's one side effect I get to skip.

Thursday, July 12, 2007

No appointments today. First and only free day this week. I took it very very slowly. Vegged in a major way. Only obligation was to eat properly and keep up with the Advil. Two bothersome things though:

1) Advil wasn't doing it all, both hips were misbehaving badly and in fact the pain was radiating down both legs. So, by evening, I had to take a Lortab5/hydrocodone with the Advil to survive it.

2) Was vegging in front of the TV after the pain relief really kicked in and fell asleep. Sometime later I woke up with the chills, very bad case. Thankfully Spouse was here and heard me groaning and breathing rough over it as my fever shot up. Just like last Friday, I was too cold and shaking too hard to even get my medicine off the end table right beside me. Spouse helped with that and as soon as the Tylenol started to slow down the shakes, I slept again. Woke up an hour later, perfectly still and calm, and sweating off the fever. Took my temp with Spouse's help before the Tylenol(102.2) then again after I woke up in a sweat (102.8). No idea how high my temp got before the fever broke.

Yes, all of the above will be reported during my appointment at the CTC tomorrow. Damn but I want answers and I want these things to stop and I don't want answers that further complicate my condition. I want to be free, really free, of all this crap.

Got the 2 PRBC units on Tues which brought my RBC 7 count up to 8.6. Was told the two units were fairly small. I had no idea the size of PRBC units was variable. Doctor not satisfied with 8.6 and ordered 2 more units today. Won't get the count until Friday but the infusion nurse said today's unit volumes were larger and should bring me up at least 1 point each, so my count should be near 11, the normal minimum.

Long day today: Had to pick up contrast for the CT scans at 8:30am and start drinking it right away. Had appt at CTC at 9am. Discussed everything but no meaningful conclusions until the CT scans are reviewed, if then. Had CT scans at 11am. Arrived at infusuion lab around noon. Was there until almost 7pm.

If the CT scans don't solve the puzzle, then we'll go with a colonoscopy. The only possibility for a root cause that was brought up, as an example, is perhaps an ulceration or similar having developed as my stricture expanded. Definitely lower GI bleeding, which did show up in one of those previous tests but no one told me at that time. However, I've had an incident since, which confirmed that the previous indication of blood loss was more than a fluke.

My insurance company was at first reluctant to authorize the CT scans. However, after the incident, the CTC folks pushed harder, having more proof of necessity, and the insurance company acquiesced just in time for me to get over to the imaging place. Good thing. No way I could afford the CT scans out of pocket. (Also good because it meant I didn't drink that stuff for no reason. :)

Going to CTC on Friday, tentatively scheduled for treatment #5, as mentioned. Still hoping it happens. Depends on CT scans mostly.

Tuesday, July 10, 2007

In brief... nevermind, I'm terrible at 'brief'. I'll post the highlights (not necessarily high points.) This post just isn't going to be as smoooove as my usual prose.

- Spouse talked me into calling the CTC Friday afternoon, after the chills-while-sleeping event. That with the others made the fever/chills events seemed to be increasing in frequency and severity. Definitely not good and still mysterious as to cause. The CTC made an appoinment for me for Monday afternoon to investigate further without the disraction of a chemo treatment.

- THANKFULLY, I felt really good all day Saturday (when Mom & Dad arrived) and Sunday when we went to old Mesilla so I could show them a taste of this region's history (lots of adobe houses and an old church preserved from the 1800's). We had lunch at a really cool restaurant there, full of eclectic antique decor, each of the many rooms being totally unique, and serving good food, then we did a once-around in the little tourist/shopping Plaza even in 100 degree weather. After that, Mom & Dad (whom you shall remember are Walmart King and Queen ;) went grocery shopping with me. Very helpful. I would bet money that Mom & Dad's presence not only made me happy in a literal sense but lent me energy on a spirit level. *nod* They're just so positive and energetic, it's hard not to be bouyed by them.

- Thankfully, I only had a fever (sans chills) Saturday evening and one on Sunday evening. Ironically, I had one with the chills on Monday just a couple of hours before my appointment. I was shivering uncontrollably and Dad was sweating. I told him we needed to work out some kind of exchange. :)

- Mom & Dad also went with me for my Monday appointment at the CTC. It was cool to be able to show them the chemo suite where I spend every other Wednesday afternoon. Also cool to introduce them to my chemo nurses/techs and visa versa.

And now for the... um... whatever. Recall that my RBC count had fallen to 8, postponing chemo treatment #4 and prompting an IV megadose of iron. The next week, it was up to 9+ which still isn't at minimum on the normal range (11-14), but was deemed okay to do #4.

Monday, it was 7... despite a shot during the last visit to boost my marrow's RBC production, despite my hips torturing me which is now presumed to be caused by the increased production and requiring over-the-top use of ibuprofen, despite the fact that I have felt much better than the ass-dragging exhaustion I felt when the count was 8, fevers with chills being the only fly in that ointment as that is very draining.

So from Monday's discussions and blood workup...
- the concensus was that the hip pain is surely all about bone marrow making RBCs
- I got a shot to increase production of white blood cells (WBC) even though that count is okay, but if I am fighting some infection I could use that boost
- the 7 count obviously means I am headed in the wrong direction, despite all efforts to the contrary, and everyone at the CTC seemed surprised that I am ambulatory; lower than 7 we did not discuss specifically but I could tell it gets bad, very bad
- the current guess on the RBC drop is that I'm losing blood, probably through my gastric system and it's being eliminated with solid waste (that's as subtle as I could put it and imo it's still TMI). It doesn't make sense to me because I do not see evidence of that but the doctor said I might not if it's a fairly gradual albeit continuous thing

** going for a tranfusion today to get some more blood in me, 2 units I think **
** going for CT scans tomorrow, with contrast (ie, drinking yucky stuff to make ye olde digestive system show up better) to see if we can determine if/where I might have a trouble spot that may be bleeding or may be an infection or some other clue; having scans of chest, abdomen and pelvis to pretty much cover my whole bod **

- Obviously, because of the 7 count, another chemo treatment (#5) is postponed. With lots of luck (if transfusion elevates RBCs to maybe 9 or better) I might be allowed to do #5 on Friday, thus preventing the further shuffling of my ultimate schedule.
- The shuffling of the schedule, ie extending it, disturbs me on two fronts: taking longer to finish up this last (damned well better be the last!) phase of deleting the cancer, and 2) Grandma's reunion on Labor day weekend. I was already pushing it to make a trip home for that --- and being well enough to enjoy it --- but each chemo postponement pushes me closer to making that trip imprudent or in fact impossible.

I am highly annoyed. I certainly did not expect nor sign up for these complications. In some ways it harkens back to when I was so frustrated trying to get all the complications and delays out of the way so I could get the takedown done and start this chemo. grrrr

Have I mentioned that I'm impatient? Yeah, I thought so.

Note: New term - FUO - Fever of Unknown Origin... But those letters are just too juicy. I'm sure I'll eventually come up with something meaningful. *grin*

Saturday, July 07, 2007

I'm beginning to think there's no cancer left (obviously a good thing) so the chemo has nothing to attack but ME! sheesh

Yes, it's ultimately a great thing, but for four more 'insurance' treatments, it's not going to be a fun thing. There's no way to prove it's unnecessary, so... I'll do it, just to make sure. ugh

Mom and Dad are coming! Mom and Dad are coming! Mom called on Friday and said they'd be here this afternoon or evening!! I am excited and thrilled and can't wait to see them, to be with them. YAY!! It's the perfect time for their visit. Despite my complaints, this is the 2nd week post-chemo treatment, so this is the best I'm going to feel prior to my next treatment on Wed 7/11.