Back to Health Update Main Page
Oct 31: ER/Home
Increased back spasms last night. My prescription pain pills did nothing to ease the pain. Ambulance came at 12:30am. Spent next 4 hrs in ER. Returned home this morning at 5am via taxi. Feeling improved this morning after hospital wonder drugs (dilaudid), but back still very gimpy. Will need to follow-up with my oncologist before continuing daily filgrastrim shots. This episode reminded me of Round 2, Cycle A in both pain and timing. Scheduled for blood work at the lab again today.
Oct 30: Home
4:30am and can't sleep, though very tired. Energy is low which impedes any real attempts at getting anything done for the hours I'm "awake". Back aches starting to increase again, I assume due to the daily shots of filgrastim (neupogen). Mouth and throat pretty bad...baby food consistency food looking good. [oh, my] Last day for steroid decadron. Back on 100mg prednisone tomorrow. [ugh] Gained 5 lbs this week...let's see...in a year, that's 250 lbs weight gain. [yikes!] Glad I can't focus on any single thought for too long. [whew]
Oct 29: Home
Whopping 4 hrs sleep last night. [grin] Feeling improved. Earache from last night has subsided. Stuffy nose is open this morning, too, thankfully. Throat and mouth raw and sore. On 3rd day of substitute steroid to go with Friday's chemo. Feeling less anxiety this morning for the first time in 2 wks. I am having difficulty with the prednisone altering my personality...no patience, whatever. And everything is worrisome. Aargh. Glad to be emotionally more "up" today.
Oct 28: Home
Only 2.5 hrs sleep. Bad reflux, busy brain, and back and neck pain won...for the moment. Feeling a bit gimpy today. Yesterday's and today's platelet numbers holding steady at a measely 19 (transfusion at 15 or less). Very low white blood count and zero neutrophils puts me at extreme risk for infection/disease. Glad to be back from the hospital for lab work. Hospitals are a bad place to be for those with susceptible immune systems. Hopefully, today marks the "nadar" or lowest point of this cycle and tomorrow's numbers will show a rebound.
Oct 27: Home
Weak, tired, and hungry. Hey! What's for breakfast? (the eating never stops on steroids) Face starting to swell into steroid-classic "chipmunk cheeks". Skin losing some elasticity and wrinkling. Black hair starting to crop up all over. Appetite still ravenous. Maybe in a couple months they can use me as a freak side show in a circus or as a rare critter in the Columbus Zoo... Have to go to Riverside Hospital today and tomorrow for blood work and possible tranfusion of blood products. I will be ever so glad when this ordeal is all over...
Oct 26: Home
Weaker today. Mouth and throat feeling raw. Bad headache yesterday afternoon--not sure of cause. Scheduled for outpatient chemotherapy at the lab this morning as the last part of this Cycle A--vincristine is the drug. Family coming to visit this weekend.
Oct 25: Home
Not too bright-eyed this morning. Sleep was there, but just not enough. Mouth starting to turn dry and sore again. Maybe this'll help the appetite. Chemo effects make everything taste a little metallic to me. Kinda like drinking a can of Tab (which already tastes likes liquid paper clips to me). [grin] No blood work today. Yesterday's numbers, although down, appear to be on target. I will be enjoying winter-like conditions outdoors today. I'm looking forward to it.
Oct 24: Home
Wow. Sleep. 7 hrs. 1st night like that in 2 wks. Not looking forward to doing my prednisone dose this morning. Will I go another 48 hrs on 4 hrs of sleep? Will I need to start grocery shopping at Sam's Club to support my appetite? [hahaha] I continue to take 100mg prednisone every other day. Lab work later this morning. Platelet numbers may be at critical levels. Yet another day of "wait and see".
Oct 23: Home
Un-weirded this morning, but still groggy after 3 hrs of interrupted sleep. Up heaving last night. [yuk] Apparently over it now. No lab tests today. Platelets down dramatically yesterday. Early morning labs tomorrow will be crucial to regular schedule...
Oct 22: Home
Still feeling a bit weird. Have had several drug "moments" this weekend--mostly a overwhelming clutter of illogical, pseudo-important thoughts. Last night and this morning have been rugged. Last night I could not go to sleep, tho very tired. Took a pain pill for herniated disks in my neck & back. Laid down in bed with pounding headache on right side of head and full right ear. Saw blue spots (like splotches of paint) for a while. Then the top of my head began to "crawl" (felt like many tiny beetles excavating their way out of my head). Incredibly, I slipped into some sort of dream state anyway. For a while, I was a geologist looking for sapphire in an Ohio stone quarry, then I was lost in an Amazon jungle with wild animals, then I was responsible for testing a McDonald's sandwich smasher which would "identify" a smashed Egg McMuffin after 12 hits by emitting a robotic "Egg-Egg-Egg". This machine did not work well, but everyone in the audience was dazzled by flashes of burning, blue sapphire in the night sky. I woke up many times with a fast heart rate and short breath, depending on the size and quickness of the jungle animals I faced. Later this morning, tho still smitten with soreness in the back, I found i could nearly fly with lightness of being. Dizziness is gone and semblence of normalcy has returned, thankfully. Still feeling "crawly" and seeing everything with purple-tinted glasses. I don't think I'll drive today or try to make any big decisions...
Oct 21: Home
Chipper this morning after a good night's sleep at home. Ahhh. Family visiting yesterday & today. Gorgeous weekend. Glad things have gone smoothly so far for Chemo-sabe (me). [hahaha]
Oct 20: Hospital/Home
Still good, but starting to wear down with chemo already. Released from hospital around noon. Spicy hot garlic shrimp was wonderful (definitely not hospital fare). Blood numbers starting to show effects of chemo. Will continue prednisone again on Monday. Lab tests M-W-F. Lowest point (nadar) should occur next weekend.
Oct 19: Hospital
In good spirits today. Feeling good physically. Blood numbers good from yesterday & today. High white blood count due to steroids. (elevated during Cycle A) Tentatively, I'll get out of here tomorrow afternoon (Saturday), but as always, am not holding my breath. This is, after all, the happy hospital land of surprises... [grin]
Oct 18: Hospital
Improved slightly. I.V. liquids doing their job. [grin] Found out one of my chemo mixes was mistimed and will delay exodus from this fine facility for another 12hrs. At least it was not missed altogether. Steroids & chemo balance is still in check. [warning: soapbox ahead] Getting aggravated with CNN coverage of super-duper, mega-hyped, anthraxphobia. Aack. On the good side, since the media talks about nothing else, we can hope that nothing else is wrong with the world right now, right??? (yeah, right). [Ok. off soapbox] Blood numbers from this morning still not available...
Oct 17: Hospital
Really bushed. Back to less than an hour of sleep at a time, thanks to tons of I.V. liquids. Other than a bit of sleep deprivation, feeling pretty good. Back to hospital routines again and zillions of interruptions, too. Blood numbers looking good. Next couple of weeks I'll be walking a fine line balance of medications. Danger of infection will be very high due to rare combination of prednisone and chemotherapy (both whack the immune system). White blood count numbers will show an artificial high, but belie the weakened ability of the body to stave off infection. Both the prednisone and chemotherapy also hit the bones hard and increase the risk of osteoporosis. All things being monitored closely...
Oct 16: Hospital
Celebrated good blood numbers yesterday afternoon with a trip to Lake Erie for birds & leaves. What a lovely day! Got home late last night, so a little fatigued this morning, but good overall. Have Dr. appointment in a couple hrs and hospital admission today to start Round 3, Cycle A of chemotherapy today. Today will mark my half-way point in chemotherapy. The first half took 4.5 months. At this rate, it'll be the end of February, 2002 until I'm done. The very most optimistic treatment schedule would be 3 months, or mid-January, 2002. This assumes, of course, that there will be no further complications. [ugh] YES, I'M IN THE HOSPITAL (finally), getting chemo as I write.
Oct 15: Home
Slightly improved today after decent sleep last night. Will be driving back to Columbus, Ohio this morning and going in for blood work this afternoon. Results will be posted later.
Oct 14: Home
Weaker today and tired, but mind still races. Unfortunately, focus is a real problem and my mind rambles aimlessly like continuosly clicking on internet hyperlinks and ending up on topics totally unrelated to the original thought. [ugh] Still visiting family and eating anything not nailed down. Facial hair starting to return as gray fuzz. Oh, yippee...
Oct 13: Home
"Bing-Bing-Bing! Ricochet Rabbit!" Still in hyper mode (at least in my head). Body is weak enough that it does not keep up with the constantly cranked mind. It's like being overdosed on caffeine... The sleeplessness finally caught up with me last night. I slept well and feel normal (except for a mind that could have solved all the world's problems while I'm typing this update this morning).
Oct 12: Home
Bouncing off the walls. Megadoses of prednisone (100mg/day) has my resting heart rate at 100bpm and blood pressure elevated above normal, not to mention a significant increase in appetite. Slight insomnia last night, but feeling pretty good this morning. Neck and back pain still aggravating. Good news! Platelets are on the rise--up to 56 yesterday from 21 on Monday. (normal is 150-400) Will be spending the weekend visiting family in northeastern Ohio this weekend. Blood numbers from this morning's lab work will be posted later.
Oct 11: Hospital Outpatient
Felt a little punk yesterday afternoon after IVIg treatment. Ran a mild temperature all evening (100 F). Slept all afternoon and evening. Started megadoses of prednisone (100mg/day)--a little scary. Feeling improved this morning. Another 5-6 hrs in the hospital infusion lab today. [whee]
Oct 10: Hospital Outpatient
Feeling a little decrepit today with sore muscles and back and neck pain. Results back from Monday's bone marrow biopsy are encouraging. The good news: NO CANCER RELAPSE. Plenty of megakarocytes were found in the marrow for platelet production. Apparently, the spleen is destroying the platelets. Diagnosis is ITP--Idiopathic Thrombocytopenia Purpura (see About ITP). Today and tomorrow I will be receiving IVIg, or Intravenous Immunoglobulin--a solution of globulins containing antibodies normally present in adult human blood. Globulins are simple proteins that provide immunity against disease. IVIg is used for maintenance treatment of people who are unable to produce sufficient amounts of immune globulin antibodies. The I.V. treatment will take approximately 4 hours each day (w/o complications). After IVIg treatment, I will be put on prednisone. Blood work will be done on Friday and Monday. I'll see the Dr. on Tuesday with possible admission to the hospital for continued chemotherapy.
Oct 9: Home
Slept most of yesterday afternoon, evening, and all night. Better today. Sore back at biopsy site. Sore neck worsened today. Bone marrow biopsy will rule out a relapse of cancer (I'm pretty certain that cancer has not returned as I have none of the symptoms I had in May). Biopsy will also tell us if enough megakarocytes exist in the marrow (these produce the platelets). If no cancer, and if enough megakarocytes, then I may have an autoimmune disorder called ITP (Idiopathic Thrombocytopenic Purpura). This is a condition in which the spleen is killing the platelets produced by my own body. This is treatable by corticosteroids. But if that didn't work, a splenectomy would be performed (surgical removal of the spleen).
Oct 8: Hospital???...Ha!...NOT! Platelets are *STILL* too low.
Scheduled for blood work, another bone marrow biopsy [yikes], and hospital admission for more chemotherapy this afternoon. Not looking forward to getting my hip bone "chipped" again... [ugh] Blood numbers posted now for today. CT Scan: extra lymphs gone [good], more fat deposits on liver [bad], auxilliary spleen found [2nd spleen???]. Bone marrow biopsy went "ok". After seeing me sweat putty balls and shed crocodile tears, both Dr. & nurse decide I need a stronger dose of premedications before next biopsy. [sigh of relief] Should have results for bone marrow biopsy by end of week.
Oct 7: Home
Another good day! I happily accept it. [grin] Annoying neck pain still present, but held in check. Family here again today.
Oct 6: Home
WOW! MUCH better today physically. Had an incredibly sound night's sleep. (7 hrs straight--longest zzzz since May!) Went for a semi-brisk walk this morning! (no, it wasn't just the cool weather...) Family visiting today. Absolutely gorgeous weather this morning!
Oct 5: Home
Better. Neck pain and headaches lessened. Mild Cold symptoms still present.
Oct 4: Home
Feeling a little tired this morning. Irritating neck pain developed this past weekend has increased to uncomfortable levels overnight. Minor headaches with increased neck pain. [ugh] Blood work and cat scan later today... Platelets are STILL dropping. Could be that my spleen is destroying the very platelets that are being created by my bone marrow. (this condition could occur for several reasons). Treatment could be a stiff regimen of corticosteroids. It that doesn't work, surgical removal of the spleen would probably be suggested. This, of course, is all dependent on the final diagnosis. At this point, a miracle would be just fine by me!!! Had CatScan today of chest, abdomen, and pelvis to look for extra lymphs. Bone Marrow Biopsy this Monday to check again for cancer. I'm a little under the weather this evening with a mild cold (or something like it). Neck pain is worsening. Headaches increasing.
Oct 3: Home
My active mind kept me sleepless most of the night. It's been difficult with the latest Drs. report to remain positive. I'm striving to look for my open window in this situation...there *always* is one...a way to change an incredibly negative situation into a positive opportunity. More time with family today. I've got great support from them...and thank God for all of you who've been faithfully praying for me each day. Your support is greatly appreciated.
Oct 2: Home
Feeling good physically. Headed for Northeastern Ohio to visit family today and tomorrow and the weather and the leaves. Each day--every encounter--is to be enjoyed. You never know how long you have in this temporary place...
Oct 1: Hospital...aargh...back Home for another week
Feeling OK. Will get lab work done today to check blood numbers before admission. This is the third attempt to get the next round of chemo going. Oh, the suspense... [grin] Platelets are *STILL* too low. Two theories: 1) cancer relapse; 2) some autoimmune disorder. Neither one of these sound pleasant. CatScan scheduled for Thursday. Another Bone Marrow Biopsy scheduled for next Monday.
Back to Health Update Main Page