Back to Health Update Main Page

Jun 30: Home
Much weaker today. Family here for weekend. Never awake more than a few hrs at a time. Mouth sores prohibiting eating solid/dry foods, fruit, sweets. Temperature elevated. TV hooked up and working.

Jun 29: Home
Furniture looks great. Hard to have all these electronic toys and not have enough energy or strength to hook everything up yet. Oh, well. Met with Physical Therapist today and took 5-min. walk outside. Felt good. Had echo-cardiogram this afternoon (results in 2 wks). Had Dan Sanders sneak me down to SE Columbus to see the Yellow-crowned Night-Herons (state life bird). Ate out at Chi-Chis, in spite of bad mouth sores. Paying the price now. Slightly elevated temperature...

Jun 28: Home
Will be busy day today. Furniture & TV deliveries and house set up with Lifeline Systems health alert. More later. Looks like my el cheapo ISP is back up and working...

Jun 27: Home
I'm in heaven. Great night's sleep. Went through 35 msgs on my home answering machine. Meals at home, no hospital gown, no interruptions...life is good!

Jun 26: Hospital
Tough sleep night. 2 units of blood from 2am-9am. Saw cardiologist. Will be hooked up with event monitor later on. Dr. H gives go ahead to go home, but I have trouble connecting with schedules with friends & family. Finally released from hospital last night at 7:15pm. Went to Big Bear and got largest stack of drugs filled that pharmacist has ever seen. 9pm and I'm home.

Jun 25: Hospital
Better sleep night, but ranks as one of the weakest days physically. Starting to lose facial hair...but the gray hairs linger. Going home still up for grabs. Platelets at very safe level now as well as white blood count & neuts.

Jun 24: Hospital
Tough night. 3hrs sleep. Night sweats & heart palpitations contributed to the mess. IV leaked, too. Feeling pretty good this morning, in spite of the night. Platelets high enough that I've been able to use toothbrush and toothpaste for the past two days! Yippee!

Jun 23: Hospital
First effects of chemo showing up today...fatigue. IV's pumping through great volume of fluid. Restroom visits every 45-50 min. all night. Ph taken to balance sodium bicarbonate intake to reduce risk of kidney infections during methotrexate treatment. Finishing 24-hr bag of methotrexate this evening as I type. Must take blood levels now to measure effects. Ara-C chemo finished around 2pm today. Friends & family here. In good spirits. Neuts not available yet for today.

Jun 22: Hospital
Will start Cycle B of chemotherapy this afternoon. Feeling pretty good. Dark head hair thinning quickly now...leaving a few grays. I thought cancer was scary. This round of chemo sounds pretty scary, too. One drug will stop DNA production. Nice, eh? More later.

Jun 21: Hospital
2nd unit of blood didn't finish until 2am last night. Met with Dr. H this morning. Heartscan was clean. No cancer in central nervous system. Ear-nose-throat clean. Too much a problem logistically to go home for 2 days, get home health care set up, buy prescriptions, needles, gauze, etc., set up transportation, only to come back on Monday for Cycle B of chemotherapy. So numbers will be monitored today and tomorrow. If all is well, will start 2nd round of 4-day chemo on Friday. This one has different drugs and is anticipated to have a stronger effect than the first round.

Jun 20: Hospital
Extremely weak. Needed blood transfusion today which didn't come in until evening. Too weak to update this page. Not going home. Love this yo-yo stuff?

Jun 19: Hospital
Met with Dr H last night. While Philadelphia chromosome test is negative, it does not rule out other Philadelphia-like chromosomal mutations (with much the same evil effects as the PH+). Will need to harvest some of my own marrow for later.
Felt the power of human frailty last night. Awake from 4-6am. Cried a few necessary tears and started reading A Year in the Maine Woods to distract me.
Chronic sinusitus showing up on MRI, so had to meet with Ear-nose-throat specialist today (clean results!). Had heart CatScan done this morning to check for clots around the lungs due to this weekend's heart problems. Had ultrasound of scrotum to check for cancer. Lumbar Puncture (also called spinal tap) administered this morning went smoothly. Received chemotherapy for the brain and central nervous system through the same entry between L4 & L5 in the spine. Had to lie flat on my back for the next 6 hrs.
To eat lunch, I had the nurse cut up the entire lunch into small pieces. I placed a towel over my chest and would reach over the bed rail (without knowledge of what was being picked up) and feed myself by hand. Lovely. Had to drink through slanted straw. They had no problem whatsoever convincing me to lie flat. "You'll never forget a spinal tap headache" was all I needed to avoid getting one.
Blood counts all up except for hemoglobin and hematocrit. Redrew blood this afternoon--see 6/19a & 6/19b. Talk is still plausible to go home tomorrow, providing counts are in safe range.

Jun 18: Hospital
Only 4 hrs sleep last night, but slept on-and-off all day. Much improved over yesterday. Walked half way down the hall today and back. Learned how to replace dressing on my catheter as well as flushing it. Cancer cells back at 0% today! Other CBC numbers in table below. Will see Dr. H tonight in an hour or two. Plans to draw more blood tonight and check clotting; will do spinal tap and central nervous system chemotherapy tomorrow. More new pokes and jabs. [GRIN]

Jun 17: Hospital
Decent sleep, but weakest day yet. Great effort to do simplest things like sitting upright or lifting the phone receiver. Starting to lose a little hair. White cells: 0.5, Neutrophils: 25%, Hemoglobin: 8.0 (blood transfusion prob. tomorrow), Platelets: 47. Blasts: 1% (cancer cells back again). Throat and mouth bad. Hurts to talk & swallow. All food has slight metallic taste. Taking substitute saliva (catchy name, eh?) & magic mouthwash (numbs the inside of the mouth much like a dental anesthetic).

Jun 16: Hospital
More night sweats and 5 hrs sleep. In better spirits. Strength like a wet dish rag. EKG was clean from last night. Another EKG today. White cells: 0.4, Neutrophils: 2%, Hemoglobin: 8.3, Platelets: 49 (received platelets last night at midnight). Throat and mouth sores worsening. No faintness today.

Jun 15: Hospital
Night sweats prevent much rest as well as dry, sore mouth, gums, & throat. Linen change at 3am. Thought I had licked this problem with first round of chemo. Today's counts all lower: Whites at 0.8, 0% neutrophil, hemoglobin at 8.8, and platelets at all-time-low of 10. Will get platelets sometime this evening (via IV). This afternoon was 3-ring circus. Had bad sweats around noon, but all vitals normal, heartrate at 120 resting. At 2pm had 2nd bout with sweats, this time with notable faintness, tongue has turned whitish and new sore developed. Drs. were on hand to observe, but were all perplexed. Had glucose test done (220) and an EKG (no results yet). Under close observation.

Jun 14: Hospital
A better night sleepwise. Much weaker today. Heart races just to get to the bathroom just 10 ft away. White cells at 0.9 and still dangerous for infection. Hemoglobin up at 9.4, but still quite anemic. Platelets drop again to a new low of 14. Talk through the day was still of going home. I was worried greatly. How could my bachelor pad be safer than a monitored hospital room? Didn't see Dr Blair until this evening. Confirmed the FISH report is definitely negative for the Philadelphia chromosome, but other gene abnormalities are not ruled out. Still pending more gene work. Best news for me (even though I'd love to get out of this place) is that I'll be here this weekend in the hospital. Dr. Blair was more concerned with my weakness and racing heart than the low blood counts. I hope this does not signal heart complications from the cycle a chemotherapy. Hospital room bird list is up to 21 (added Red-winged Blackbird and Killdeer today).

Jun 13: Hospital
What a night. Typical hospital. Between 10pm and 8am, I encountered 17 interruptions in sleep. Longest period of sleep: 1hr 18min. Longest period awake: 1hr 2min. Most foolish interruptions: 6am-Did you have a bowel movement last night? and 6:25am-Menu for today. YIKES! Top news: talk continues of possibly going home this weekend. White blood cell count at 0.9 (very susceptible to infection). Platelets at 17 (bleeding a serious problem). Hemoglobin at 8.5 (very anemic). FISH rpt from Mayo Clinic today apparently provides me with initial negative status on PH (Philadelphia Chromosome). This is fantastic news!

Jun 12: Hospital
I’m in good spirits today. Had a good night’s rest. Dr. Blair says my recovery from chemotherapy is going great. May [optimistically] be able to go home as soon as Friday, depending on my condition and blood counts. Blasts (cancer cells) at 0% right now. White blood count is 1.1. Platelets at 19…may need platelets tomorrow. Hemoglobin at 9.1…will need blood transfusion when it goes below 8.

Jun 11: Hospital
A tough morning. Bad night’s sleep. Very weak. Not hungry. Slept all morning. Afternoon was improved. White cells at 1.7. Platelets at 23. Hemoglobin at 9.6.

Jun 10: Hospital
Another fun day with friends and family. Lots of laughter. Boosted my spirits greatly.

Jun 9
Just family today. Ran errands for me, collected mail, helped with bills, cleaned my apartment and stocked my freezer.

Jun 8: Hospital
Full day of visitors. Room is happy and full of family and friends. Feeling the support of others… Dr. H leaves with family for DisneyWorld for a week. Mentions may be going home. (this is scary at this time)

Jun 7
It’s a Calvin & Hobbes comics reading day after yesterday’s techno-oof. No side effects to chemo, although the 6 bags hooked up every night to IV keep me from sleeping more than 45 minutes without trundling to the bathroom.

Jun 6: Hospital
Read the latest on Hyper-CVAD therapy. Prognosis is not so good. With no other complications, 40% of the people with ALL make it to year 5. If the Philadelphia chromosome is found to be positive, then we’ll have to beat some pretty tough stats (no one made it past 4 yrs in the study).

Jun 5: Hospital
Hemoglobin levels drop to below 8.0 and I get two bags of blood transfusion. Chemotherapy started at midnight, even though full results are not known. Cancer has moved too quickly to delay any longer. My method of treatment is called Hyper-CVAD. I’ll be getting chemotherapy for 4-5 days straight every month for about 8 months with monitored recovery each time.

Jun 4: Hospital
Platelets down to 20. Very weak. Get surgery (while platelets are being given) to put in a Groshong catheter in the chest. This procedure only took 30 minutes. Within a couple hours, the catheter was already in use for all IV liquids and blood samples. Did not have full results yet at this time, though I described them below when I saw them this week.

Jun 3: Hospital
More tests. I can’t even remember them all. Poked and jabbed at every opportunity, I think.

Jun 2: Hospital
Bone Marrow Biopsy reveals cancer cells have taken over most of the marrow throughout my body. Diagnosis is now more specific—Acute Lymphocytic (or Lymphoblastic) Leukemia. The subtype is L2 (for you health nerds). A single cancer cell was identified as a Myeloma, but no other cells (for AML) were positive. This could be an aberrant Myeloma cell or PH+ (Philadelphia) chromosome.

Jun 1: Hospital
Admitted to ER with platelets at 29 after a month of a general demise of health (cold/flu-like symptoms, weak muscles, shortness of breath, general fatigue, night sweats, fevers, chills, and unexplained weight loss). Diagnosed several hours later with probable Leukemia (cancer of the blood). Dr. H wins my favor in a short amount of time with straightforward dialogue about the diagnosis.

Back to Health Update Main Page