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Jul 31: Home
Will have more lab work tomorrow, due to low platelets. Push chemo still planned for Thu. as well as more lab work. Feeling unusually good today...odd for this day in seq. of chemo. Wonder what's really going on... Until then, will enjoy better health.

Jul 30: Home
Lab work today unusual. Platelets dropping, but WBC is still high. Hmmm. Unusual for chemo. Out for a short time birding this afternoon. Feeling better than yesterday...

Jul 29: Home
Still at home. Cumulative numbness in fingers makes turning pages difficult. Spoiled by last week of chemo-free treatment. Weaker still. Inactive today with family. Slept all afternoon. Difficult to feel cognizant and alert, yet weak and lethargic. Guess it beats incoherent!

Jul 28: Home
Ran errands & visited family in morning. Starting to wear down considerably. Heart races for easy chores. Slept 18 hrs. off and on.

Jul 27: Home
Groggy & tired today from yesterday's chemo. Going through mail & phone calls again in meager attempt to stay organized. Nap time...

Jul 26: Hospital
Blood numbers better. No temperature. High WBC appears to be result of side effects of steroids. Chemo finished. Released from hospital. Haggled with insurance for drugs again for 2 hrs. Home by 9pm.

Jul 25: Hospital
Not bad today. A little fatigued. Got CBC's. White blood cells very high at 21.5. No temperature, though. Odd. Infection somewhere is likely. Will do blood redraws later out of both catheter lines and out of arm. Will check urine & fecal samples as well. Oh, boy. Please, please, please, no more infections...

Jul 24: Hospital
Feeling improved over yesterday's grogginess. Surgery site already improving with little pain. Catheter working well. Friday's Lumbar Puncture was clean (no cancer)! No CBC today, but partial blood work turned up high Potassium. Blood redraw was within normal range, so no worries. In different room--have zero birds in two days...

Jul 23: Hospital
Up at 4am for 5:30am hospital arrival. Checked in, got my hospital gown, got poked for blood (to check for coagulation properties), got poked for temporary IV, and got knocked out this time for surgery. Surgery went smoothly. Slept most of morning, and on-and-off all afternoon. Stiff and sore, but well, nonetheless. Started chemo Cycle A this evening at 7pm.

Jul 22: Home
Last good day until I don't know when. Will be in the hospital this coming week (prob Mon-Fri). Catching up on reams of mail. Supposed to show up at hospital tomorrow morning at 5:30am for admission. Surgery scheduled for 7:30am (Groshong Catheter) and then Cycle A of chemo again. I'm really not looking forward to feeling like a helpless invalid again and going through the pain. Sigh. Wish there was another way...

Jul 21: Home
Another great day with family. Each moment is special. Glad to see my nephews from Oklahoma while I'm "well".

Jul 20: Home
Another good day. Visited family in morning. Wish I wouldn't have all these appts during a "good" week. Had Lumbar Puncture and chemo treatment for Central Nervous System this afternoon. Only mild headaches and slightly fatigued.

Jul 19: Home
Feeling great. Traveled home to see family. Stayed overnight. Blood numbers look good today. First insurance mess with prescription. No choice but to pay $60/pill or be readmitted to hospital. Ugh. Spent 2 hrs trying to get approval. Will fight this later.

Jul 18: Home
Visiting with family. Visit with surgeon today. Infection on the mend. We're on target for surgery on Monday (23rd) for re-insertion of Groshong Catheter in chest.

Jul 17: Home
Another great day. Outdoors today enjoying REAL air and some birding. Infection continues to improve slowly. Sister & family in from Oklahoma to visit. Lumbar Puncture rescheduled for Friday afternoon.

Jul 16: Home
Feeling great today. Had blood lab work done today, then scheduled the week full of appointments--surgeon consultation on Wed, lab work on Thu, Lumbar Puncture & chemo on Fri, lab work, Dr. appt, & surgery next Monday (23rd). Got 2 of 3 prescriptions (still awaiting pre-auth on the wonder drug). Hooked up car battery to charger since 46 days of inactivity has drained it. Blood numbers today look good. WBC is falling (a side effect of my wonder drug antibiotic).

Jul 15: Home
Yippee! I'm out again--this time with enough of the special antibiotic to buy some time to get the rest from a pharmacy. Relaxing afternoon with family and a great night's rest.

Jul 14: Hospital
Happy I'm going home today. Discharged at noon. Out to eat with family and a relaxing afternoon at home. Ran some errands, read mail, and stopped at my pharmacy...which was closed due to a pharmacist shortage. Aargh. Stop #2 at a drug store that's closed. Stop #3 at a drug store that no longer exists. Stop #4 at a CVS 24-hr pharmacy. They don't have the antibiotic, linezolid. Paged Dr. I end up having to get admitted back to the hospital...again. In same room, 7269, by 9pm. Poked 5x before vein is found for IV. Veins in bad shape. Must get over infection quickly for re-insertion of catheter in chest to preserve veins & continue chemo. Bummer to be back here instead of at home. Feeling my best in a long time and I'm stuck here...egads...

Jul 13: Hospital
Feeling very good today. Mouth sore almost healed. Infection in chest causing very little discomfort. Infection in colon is gone. Blowing this popsicle joint tomorrow after morning's IV antibiotic...as in going home. Wahoo! Will have a week reprieve before being hospitalized again for more chemo (Jul 23). Scheduled for spinal tap and intrathecal chemo treatment (lumbar puncture with chemo for brain & central nervous system). On the negative report side (can't I have just one day with all good reports???), the gene mapping folks have returned their findings. Looks like I have many Philadelphia-like chromosomal mutations and even the Philadelphia positive chromosome is not completely ruled out. These mutations seriously impact the likelyhood of living beyond 4 yrs. For this, science will have to take a back seat to a good attitude and a miracle-working God. Will probably be going to Cleveland Clinic in early August for a bone marrow evaluation and discussion of options. Bone marrow transplant looks likely.

Jul 12: Hospital
Improved. Had terrible cramps & diarrhea this morning which subsided by late morning. Infection looking better. Infectious Diseases says the abscess is draining itself and will monitor it. No surgery. Yippee! Had blood draw from my finger this morning to obtain my CBCs. Two more attempts today at inserting a mid-line catheter in my right arm. 1st attempt with local anesthetic, 2nd attempt without it. Quite painful. Catheter tubing made it up the arm 5 inches (half way), but met resistence. Failed again. I'm stuck here in the hospital now until Infectious Diseases determines that IV antibiotics can be switched to oral. Looked like it was a pretty day outside. I've got cabin fever...

Jul 11: Hospital
Feeling pretty good, but bushed this evening. Saw 5 Drs. between 8-9am. One thinks I go home tomorrow, several Friday, and a couple think it'll be several days. Who knows? Went to have Doppler of infection, but found out [for this procedure] is same as ultrasound. Took over an hr to return to room. My IV clogged soon after and they inserted it into a most inconvenient spot--between my 1st & 2nd knuckles on my left hand. Hope I don't tear it out in my sleep tonight. Folks came to room to insert mid-line catheter into my arm, but failed on either side. My veins have been overpoked. Glad they didn't force it. They'll try again Friday. No blood drawn today. Infection slightly improved. Sniffles continue. Diarrhea in full force (another hospital weight-loss scheme). May go to surgery tomorrow to lance the abscess--can we skip this please? Sigh.

Jul 10: Hospital
2 units of blood last night have me feeling much better. Heart is clear of infection--hooray! Lyme Disease titers came back clean today! Infectious Diseases stopped by this morning to check infection. "Oh, God" was her reaction upon peeling back the bandage. Will go get site checked for clots & abscesses in ultrasound. Suspect abscess. Ultrasound confirmed a small abscess. Will have to be surgically removed. Later, found out it was small enough it could be drained. Another Dr. poked and pushed this evening (yet another moment I get to see stars and experience sharp pain). Dr. didn't find any pus. Charts will be checked again before going to surgery tomorrow. I'm bushed. What a roller coaster day.

Jul 9: Hospital
Ugh again, but slightly improved. For you med-nerds, the infection in the colon is clostridium difficile (c. diff.) and the catheter infection in the chest is vancomycin resistant enterococcus (VRE). Vancomycin is a big gun antibiotic used to kill enterococcus. But recently, new resistant strains have developed. A couple years ago, there would have been no cure. A new antibiotic, linezolid, will be used in hopes of clearing up this infection within 2 wks. Fortunately, this infection has not showed up in the blood. I had an echocardiogram today to check for infection in the heart. This bacteria could potentially cause valve damage. Chemo is on hold. It is vitally important to be clean of these infections.

Jul 8: Hospital
Ugh. Worst day yet...maybe ever. Pain in neck & upper right chest excruciating at times. Raging infection is red/yellow and swollen. Painful to touch (which every Dr. MUST do). Headaches, runny nose, earaches, stomach upset, blah-blah-blah. General ugly feeling today. Will probably get a temporary catheter inserted into the right arm to receive IV antibiotics at home. Had bad chill this evening (shivering, teeth-chattering, chill) which registered as nothing on hospital thermometer. Ack. Drenched my sheets after breaking my "non" fever. Blood numbers looked good today. Will have a hard time convincing Drs. tomorrow I "felt" sick. Oh, well.

Jul 7: Hospital
Now feeling the pain of yesterday's surgery and the full effect of the return of white blood cells fighting infection. Feels like two knives stuck in upper chest--don't wanna move. Mouth sores still require numbing before eating, but now beyond the "puree" stage. It will take 2 wks for the surgery to heal, delaying the next chemo treatment by 1 wk. Although the vampires drew blood, there were no lab results today...

Jul 6: Hospital
Aack. I'm not going home yet. Got a bad fever last night and things went downhill from there. Infection in Groshong catheter pink & swollen and will have to come out. Stomach bloated & painful. Feeling rugged. Slept all morning, skipping breakfast & lunch (nothing by mouth--no food or water) because of X-ray prep. At 2:30pm, finally admitted to X-ray for abdominal scan. Before leaving, one of the folks from surgery stopped by to let me know the tubing in my chest was to be "yanked". Went to surgery. The fear factor here was greater than the procedure. Out in 15 min. Painful, yes, but not "yanked" painful. Returned to room at 4pm. Had first drink of water since last night. Now ready for food. Typical for this week's stay, I didn't get a meal until 9pm. Hospital's chicken & noodle casserole, complete with congealed gravy, was less than sumptuous. IV in left arm now for big gun antibiotics.

Jul 5: Hospital
Whew! What a good night's rest will do! All counts up slightly. Mouth on the mend. Colon has bacteria infection and may be causing the fevers. Sore spot near Groshong catheter entry point--if infected, will need to redo the surgery...er, no thank you--been there, done that; don't wanna do it again.

Jul 4: Hospital
Crabby mood today...but, hooray! My laptop is back. Still in hospital. Blood numbers being monitored closely. Cultures extracted to determine cause of fevers. Hope to be back home by this weekend.

Jul 3: Hospital
Got 4-pack of platelets last night at 10:30pm. 2 units of blood, one at 2am and one at 5:30am. Not much sleep. Running temperature most of night. Sweats & chills. Worst day since Jun 1.

Jul 2: Hospital
Same as yesterday, but now gums are bleeding and reddish purple spots showing up on arms and legs. Went in for blood work. Platelets at 0! Yikes! WBC at 0.3. Hemoglobin at 8.1. Admitted to hospital.

Jul 1: Home
Weakest since being home. Still running temperature. Trouble downing food. Mouth sores worse. Numbness in fingers still present and tingling moved to hands & wrists. New soreness in right femur, but no black & blue mark. Energy very low...pain meds a contributor to lethargy. Monday noon will go downtown to have blood drawn...

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