Dec 31: Home
I'm HOME!!! Chemo is doing its stuff--no pharmacist has messed with this batch. Greatly weakened. Slept most of the day yesterday and all last night. Mouth is dry and painful, but no sores yet. Still taking steroid eye drops during this cycle. Having problems focusing. Family visiting for the extended holiday weekend. I can't wait for the lowest days to pass (prob Jan 4-8). Blood numbers were still decent yesterday. No blood draws today. Will have to go in tomorrow (New Year's Day) to get lab work done. Sigh...holiday lab work again...BUT...it IS for the last time.

Dec 30: Hospital
May be going home today! Don't have blood counts yet, but very hopeful. Feeling reasonably good. Watched intently as my last chemo bag was hung last night and finally finished at 9:30pm. The LAST BAG of the Induction Phase--all 7 months of it!!! For that, I am indescribably elated. [happy dance-cartwheel-back flip] Wheee! Now, I wish for a speedy recovery with no more negative surprises and on to the 2-yr maintenance schedule and a new life.

Dec 29: Hospital
Doing OK this morning. Starting to feel a bit weakened now. Mouth starting to go tender. Appetite still on "high alert". Hahaha. Yesterday's methotrexate level was good yesterday. To fix the clogged port lines, the nurses injected a drug they affectionately call "Drano" which, sets in the line for 2 hrs and then is "flushed" clean. Both ports now working again. Whew. Got news that if methotrexate levels are small enough on Sunday that I may make my exodus on Dec 30! Wheee!

Dec 28: Hospital
Rested well inspite of having a 3-liter night (say...as opposed to a 3-Dog Night...). And no, it was not 3L of something good to drink. Just stuff from the giant I.V. pee bags. Aargh. Methotrexate finished this morning on time, but the blood draw to test the level in my body did not go smoothly. Neither port would produce any blood this morning. We tried everything for half an hour (coughing, breathing, head turns, hand movements, sit up, lay down, walk laps, push ups...ad nauseum). Nada. Nurses ordered a blood draw from lab with my favorite words, "Life Threat". Hmmm. Life Threat? Ahh. Makes for a cheery morning, eh? Lab showed up at 8am...an hour later. Hope everything goes OK. Feeling pretty good this morning. Snow outside looks beautiful. I should be getting out of here on Dec 31--exact timing uncertain...depends on methotrexate levels in my body (nonexistent would be good!).

Dec 27: Hospital
I'm in the House of Pain again (hospital). My blood numbers were just barely good enough to get me back in on schedule...but they WERE good enough and that's all I need! Ooof! Back to being a peeing insomniac. Last night was a 2.5-liter night. I told the nurses they could just hook the I.V.'s up to the toilet and bypass the middleman (me). Oooh. TMI! TMI! (Too Much Information) Ugh. I am SO glad this is the last cycle. Besides being deprived of sleep, I feel pretty good this morning. I have to enjoy these good moments for the time being, since it's downhill from here. If I repeat "last cycle" too often for you, it's only because that's the positive outlook for this stuff. On the other hand, I have been overwhelmed by the support I have gotten from literally hundreds of people who've been praying, visiting, sending cards, emails, phone calls, and offering help. Thanks again, to all of you.

Dec 26: Hospital
Good sleep last night and a wonderful extended weekend with family. Will go in for lab work later this morning, a doctor appointment, and if the blood numbers are good enough, will be admitted to the hospital for my LAST cycle of induction phase of chemotherapy. WHOOOOPEEEEEEE!!!

Dec 25: Home
MERRRRRRRRY CHRRRRRISTMAS!!! Happy to be home for the holidays. Food is great. Sleep was elusive last night. Tingling in hands and fingers more pronounced this morning. Not sure why. Maybe it'll just go away. Prednisone is doing its thing this morning as I write. The fat, ugly, depressive emotions will pass...soon, I hope. I hate feeling like I have more than one personality. I will be soooo happy when I am able to get off this infernal drug. For now, however, it is doing its job of suppressing my immune system enough that my spleens kill off fewer of my body's own platelets. But enough already of all that yukky stuff. Today is a holiday and a time to enjoy family. Warmest wishes to all you faithful readers!

Dec 24: Home
Feeling better than yesterday. Have been having irksome dizzy spells. After laying down or sitting for more than 10 minutes or so, and then trying to stand, I often experience dizziness and sometimes even a cold sweat. It seems as though all my blood has drained to my ankles and is hopelessly unavailable for activity. [grin] This morning I was mindful of the routineness of taking my temperature, checking my body for rashes, lumps, swellings, or little purple spots and my mouth for new sores, and paying attention to any new aches or pains. Just a part of getting up or going to bed. No wonder it seems to take a long time to go anywhere or to get to bed after I'm already ready to be there. Gray cloud cover is enlivened by a soft, beautiful snow this morning in Ohio. It finally feels like Winter and, today, I like it. I like to watch a single, soft, white flake drifting aimlessly downward in a gentle, random swirl until it softly alights upon the ground. What a delight! Ahhh. Time for Prednisone Boy to go face-down into some delicious homemade breakfast! Mmmm. This is a yummy time of year.

Dec 23: Home
I'm home visiting family instead of them visiting me! Wheeee! It's very satisfying to be "home for the holidays". This is only the 3rd time I've been able to visit since June 1st of this year. Mouth still full of sores, but I have drugs. Sleep was not great last night, but there's football (read: S-L-E-E-P) this afternoon. All is well. hahaha.

Dec 22: Home
Lot's to be thankful for: blood numbers good enough to make it until Wednesday of next week! Wheeee! I'm going to visit family for Christmas! And, the nursing staff at my hospital takes up collections and plays "Santa" every year for one recipient--this year they voted for me. I was both surprised and extremely appreciative. Not only have they provided professional care with a tender, personal touch for the 80+ days I have been in the hospital, but now they have shown their love and concern with their generous Christmas gifts as well. Additionally, I have received many unexpected Christmas cards with the warmest of wishes, sympathy, and prayerful support. My heart is overwhelmed with blessing this morning. Thank you! Thank you! Thank you everyone for making this Christmas so bright!

Dec 21: Home

Getting outside at Lake Erie yesterday was great! It felt good to feel the chill of 40+ mph wind gusts blasted against my face off the Lake. The air was chilly and fresh. The blustery wind, the angry brown waves crashing against the rocks, and the immensity of Lake Erie (you can see forever) made for an adventure very unlike a confined hospital room. Tens of thousands of gulls lined the shores and near waters, too, bathed in bright winter sunlight. It was wonderful.

I have blood work this morning. I'm hoping my platelet numbers are truly soaring (I'll need numbers near 100) so I don't have to visit the hospital for lab work over the holiday weekend (Sat-Tue). I get another chance to go up to the Lake today, too, thanks to my birding friends taxi service. [grin] I am extremely grateful for all the driving these folks have done for me all summer. They have alleviated much of the hassle that has gone with this whole chemotherapy process. A personal thank you to Dan, Doreene, and Joe!

Dec 20: Home
A pleasant, relaxing birthday and some sleep last night. Feeling good today. Heading to Lake Erie today for some birding. Blood numbers are slightly up (moving in the right direction) and I won't need to go to the lab today (hence the trip to Lake Erie). Mouth still sore. Eyesight still affected by the vincristine from Monday, but improving. Tingling in hands lessened. Last day for 100mg dose of prednisone. Although I hate the drug, it is doing the desired job of raising the platelet level. I'm selfishly hoping for much better blood numbers on Friday so I won't have to go to the hospital for lab work over Christmas.

Dec 19: Home
HOOOOOORAY! It's my BIRTHDAY!! And, my platelet level doubled yesterday from 9 to 18 so I didn't need a transfusion yesterday. In fact, all my blood numbers are starting to come back. By the time my platelets reach 50, I can use a toothbrush again (I always look forward to that day). Simple things mean a lot. I'm so close to the end of the hardest part of this ordeal, I can just about taste the sweetness of not getting my body totally clobbered every month and, not having to visit "the Valley of the Shadow of Death" (the hospital). Nothing against the wonderful staff, I'm just ready to enjoy the benefits of my own abode. I have blood work at the lab again today. I dearly hope I have some time to spend outside today and enjoy this unseasonably warm December weather we're having in Ohio.

Dec 18: Home
Exhausted and frustrated. Mouth sores in full burn mode (enough to prevent sleep). Back gimpy. Arms still tingly. Platelets were at 9 again yesterday and yes, I got another platelet transfusion. Another entire day shot at labs. Yes, I'm glad I got what I needed. No, I'm not happy that I can't catch up with insurance and bill collectors at home. Aack. Going in for lab work today because *I* requested it. They were going to wait for Thursday for next CBC. Double Aaack. What are they thinking? Well, they're not. I've needed platelets the last 2 days in a row. I already had spontaneous bleeding in my body once and I'm not keen on seeing it again. Aaaaaaack. Oh, and to ward off side effects of chemo yesterday, I'm back on 100mg of the wonder drug, prednisone. Aackity-Aack-Aack. Aack. I'll post blood numbers sometime later today...maybe WAY later. Who knows? One surprise after another. Aack. Maybe some good surprise might happen today. Or not. Aack.

Dec 17: Home
Still very weak and woozy from being heavily drugged. Made it thru the night at home. What a battle. Whew. Back spasms lessened and intensity weakened a few hours ago. Mouth & throat linings white this morning and extremely sore. Hopefully, this is the bottom of this cycle and things will start to improve overall. I have both blood work and push chemo today at the lab. Prednisone dosage increased to 100mg/day over next 4 days to combat push chemo side effects. If my recovery is quick, I'm scheduled to go back into the hospital for the LAST cycle of the induction phase of chemotherapy next Wed (day after Christmas). Whoopee!

Dec 16: Home
Rest ok, but groggy this morning. Mouth & throat quite sore, esp in right eustachian tube (connection from back of throat to ear). Lymph also swollen in lower right jaw. Neck still stiff and sore. Platelets dangerously low yesterday (15) even after transfusion on Fri. May need platelets today if numbers are any lower. Have to have lab work done early this morning, just in case. White blood count down to neutropenic levels again at (0.5--normal is 4-11). Ahhh...the joys of needing anything at the hospital on the weekend and having to wear a procedure mask over your face to go anywhere in public. Sigh. On the good side, another wonderfully relaxing weekend with family and lots of food (prednisone boy still eats constantly). Got platelet transfusion today (platelets=9; spontaneous internal bleeding can occur below 20). Started developing back spasms around noon. Tylenol pre-meds for the transfusion alleviated some of the pain. Spasms have worsened dramatically since coming home at 3pm. During Cycle A, this reaction to the neupogen shots does not show up until Day 14-16. Today is Day 11, so it has taken me by surprise. I'm taking a max dosage of roxycodone (10mg) every 4 hrs. The pain is still strong enough to cause me to cry aloud. If it reaches the excruciating levels of Aug/Oct episodes, I will end up going to ER again to get drugged with their favorite potion...dilaudid (morphine). Ugh.

Dec 15: Home
Great rest--8 hrs!!! Took another sleeping pill last night and this time, it really whacked me good. Couple that with my second unit of blood transfused yesterday and I feel like a totally different person. (thanks to everyone who gives blood--the units I get from the Red Cross make a huge difference). Yesterday I enjoyed watching the power of the wind and the ever-changing sky. It reminded me of the years I lived in Oklahoma... Family visiting this weekend.

Dec 14: Home
Prednisone Boy is up again at 4:30am this morning, feeling decent, but still weak. Spent entire day in labs yesterday. Rats. Blood numbers were all lower than expected. Platelets dropped precipitously from 173 on Monday to 18 on Thursday. Had to have a blood transfusion yesterday due to low hemoglobin levels (anemia). Waited 4 hrs just to get the blood...nurses tell me I have to wait because I'm "special"--the blood has to be irradiated. Great. I L-O-V-E waiting. This morning I go back to the hospital to get a pack of platelets and another unit of blood. More sitting. More waiting. Sigh. Last night I was having one of those prednisone moments, so I decided to try to fight drugs with more drugs. I took a temazepan (affects chemicals in your brain to make you drowsy) last night and the world came to a crawl within an hour. Everything was in s-l-o-w motion. I remember turning on the TV to watch the news. I never saw it. I woke up at 1:30am and the TV was still on. I was too tired to even go to the bathroom. I rolled over and went back to sleep until 4:30am. Prednisone "alert" status has taken over again and even tho very tired, my mind is WAY awake and racing and worrying and stressing and doing all those funky things that drugs make it do. Aargh. I wish I was actually "productive" when I was "awake". Oh, well. Nearly done with the induction phase of chemo. Just a little more to go. Sigh. I can do it.

Dec 13: Home
Extremely weak all day yesterday. Racing heart and dizzy spells a bit scary. Right side of face feels swollen. Pain in right ear (mastoid area) and very sore neck and gimpy back. Ugh. Took a pain pill last night and slept wonderfully. Feeling much improved this morning (rested and a little stronger). Neck still extremely stiff and sore. Mouth lining starting to get sensitive. Prednisone "ups and downs" are still there, but I'm better-adjusted. I'm wondering though, if some of my dizzy spells are not related to "adjusting" and my blood pressure is going off the charts behind the scenes. Don't know.

Dec 12: Home
Very tired this morning. Had hard time sleeping last night. 5 hrs interrupted often by waking up with racing heart. Cheeks flushed and reddish. Experiencing occasional dizzy/lightheaded spells. Nearly fell on level ground yesterday, just while standing. Not sure why.

Dec 11: Home
Had a minor anxiety attack last night that was pleasantly interrupted by pure exhaustion. Sleep does wonders to mend problems... Feeling improved, both emotionally and physically, this morning. I had to start my neupogen shots again yesterday. I hate giving myself shots. Actually, I just despise shots altogether. Sigh. Yesterday, half the day was gone just in routine errands (lab work & pharmacy). I hate waiting. Yes, this last line was brought to you by a prednisone-induced writer. More errands today. More sighs. Oh, well. I suppose it's necessary...just not enjoyable.

Dec 10: Home
It's great to be home. Still another rugged night's sleep, but at least it wasn't on a vinyl hospital mattress with vinyl hospital pillows. Ugh. The push chemo drugs (adriamycin & vincristine--syringe injected thru I.V.) together yesterday left me worn out and well...having to visit the bathroom often last night. Feeling more clear-headed today, thanks to a better heating system at home. Grin. Blood counts were good yesterday. Prednisone dosage decreased again to only 40mg every other day. Hooray! I want to get off of this drug more than any other. It's good emotionally to handle one thing at a time...but...still looming ahead after my induction phase of chemotherapy is 2 years of maintenance therapy. I will be getting a lesser dosage of methotrexate for a full week EVERY month for those 2 years, but as an outpatient. This is still going to affect my energy level and flexibility with timing during that week for the therapy (1-3 hrs/day during working hours...hey!...work?). Additionally, the overall "medical" prognosis for me living to 5 yrs and beyond (hello 2006) is a 50-50 chance. You know, flip of the coin. Or, two airplanes are leaving today and one will crash...hop on. But, I will have to say, these are BETTER odds than other folks have with Acute Lymphocytic Leukemia at my age. I think cancer patients are lucky...we get a different perspective on what's really important in life...

Dec 9: Hospital
Cycle A is almost over! Still feeling pretty good. Decent 7 hrs of sleep last night with only 8 interruptions between midnight and 7am. Lasix (diuretic) is doing its job...the ancient hospital ritual of the Filling of the Pee Bottle was fulfilled last evening. Oh, joy. I'm getting my last dose of cyclophosphamide (chemo) this morning, will get my push chemo this afternoon at 2pm and WILL be able to break outta here this afternoon. Wheeee! I love getting OUT of the hospital. If all goes well, may be admitted for very last round the day after Christmas (Dec 26).

Dec 8: Hospital
Tired, but in a good state of mind. Had reflux last night and was up walking the halls from 12:00-1:00am. Prednisone has caused all my tissue to soften significantly. Skin & muscle are all mushy everywhere...and drooping. No wonder I feel ugly. Yuk. It also exaggerates the problems of reflux and sleep apnea because of the softening of the muscle tissue in the throat. Hoping to get outta here Monday morning if all goes well. Only one more cycle after this one. Sigh. Just about done.

Dec 7: Hospital
Feeling rugged this morning. Think I'm allergic to the heating system--it blows irritating, burnt smelling stuff into the air. And, the blower never stops. It blows arctic-cold ice cubes until it's uncomfortablly cold, then it blows a hot, Sahara Desert blast of hot air until it's too hot. Cycles continuously. My eyes are puffy, itcy, and dry and I feel grumpy. Got chemo last night around 5pm and 2nd dose this morning at 5am. Spent 3.5 hrs yesterday afternoon deep in the bowels of insurance billing. Some of these companies make the government look like a well-organized machine. Aack. I talked to one insurance person yesterday who raised the bar for INCOMPETENCE. Unbelievable. And one company I called, went thru the menu options, got a recorded msg for 5 minutes, "Please stay on the line. Your call is important to us.", and after 5 minutes there was silence. No music. No msgs. And no operator. I waited an additional 15 minutes. Nothing. I will write this company and let them know I'm not pleased with their level of professionalism. Not to mention that Customer Service is certainly NOT at the top of their priority list. It took an hour of walking yesterday to simmer down. And yes, the timing on the vitals was great. After 3.5 hrs of insurance yuk, my blood pressure was 174/110 and my pulse was 120bpm. My Dr. commented on my raised heartbeat last evening. I explained. We both laughed. Stupid insurance idiots. Those folks make guests on Jerry Springer look like Einsteins...

Dec 6: Home/Hospital
Feeling pretty good today. I go in for blood tests, see the Dr., and if all goes well, get admitted to the hospital this morning for the next round of chemotherapy (Round 4, Cycle A).

Dec 5: Home
Groggy this morning. I wonder if the prednisone is making my sleep apnea worse. Since starting the medication, my skin has softened and everything around my bones has drooped and become mushy. Ugh. Ok. Maybe having a prednisone-enhanced moment this morning...a wonderful case of the UGLIES...you know...unacceptable for human acceptance...make you wanna be a hermit? Sigh. I'm glad I can wait for these moments to pass...

Dec 4: Home
Feeling good this morning. Blood numbers from yesterday were higher than expected. Looks like I'm on target for re-admission for next cycle of chemo on Thursday. Whew. Just when you feel like you're getting enough energy to enjoy a day off then...WHACK!...you're back in the House of Pain. Aack. I'll be in a mood to celebrate when this is all over and I've come out the other side as THE VICTOR! Grin. Feeling good on a *DAILY* basis...ahhh. It's not too far away folks. We're almost there...

Dec 3: Home
A wonderfully relaxing weekend with family. Physical weakness borderline this weekend. Woke up a couple times from yesterday's "football nap" gasping for air. Walking to the other side of the apt causes racing heart and shortness of breath. Blood work today will tell the story. Feeling slightly better this morning. Had problems over the weekend, too, with arms and hands going to "sleep". Huge bruise on right arm is healing, but is causing some pain in a small knot at times. Not sure why... Vision seems to be close to normal when rested. Not enough rest distorts ability to focus, esp at close objects.

Dec 2: Home
More good rest, but weak this morning. The homemade holiday food is fabulous. Had fried turkey, spinach mashed potatos, dressing, yellow squash souffle, and pumpkin pie--all homemade. Yummy. It's good this doesn't happen every weekend for prednisone boy (aka eat-everything-in-sight boy).

Dec 1: Home
Wow. 10 hrs of sleep! A little weak physically, but soaking in the luxury of a GREAT night's rest. Eyes are much better today (difficulty focusing, esp in right eye over last 3 days). Family bringing down homemade food to celebrate the holidays at home this weekend (we celebrated Thanksgiving & Christmas together at the hospital last week). It'll be a face-down-in-the-food weekend for me, prednisone boy. Ha-ha-ha. Time to celebrate being home and alive!
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Questions or comments?: Email Greg Miller at hawkowl@yahoo.com