Adenoid Cystic Carcinoma - One Man's Chemotherapy Journey

© AUTHOR: Steve Kenney
*reprint by permission of the author only*

Date: Tue Apr 4, 2000 1:46 am
Subject: CSCGPII DIARY FOR WEDNESDAY MARCH 28TH

Still no need for an alarm clock. Up at 5:45 am and a condensed morning routine. I want to be at the Cancer Center by 8:30 to have the blood work done. Then home to pack and we are on the road to Cleveland at 10:20. We are not in a real hurry and even stop in Elkhart, In., for a leisurely lunch. We get to Cleveland around 6pm (lost 1 hour in time change) and just the usual stiffness from 340 mile trips. After checking into the motel, we go to have Chinese with some friends doing the show. Then back to the room where I crash for the night. Asleep by 9pm. Medical news for the day is as follows. Hair has started to fall out. No clumps but 2,3 or 4 or more strands if I run my fingers threw it. Beard has stopped growing. At 7pm it feels like I just shaved. I just really hope my finger nails don't fall off! Also my lungs feel like they are outlined in my chest. I have no trouble breathing, but I feel something like slight case of heartburn sensation that surrounds them. Same in the liver area like the tumor is also surrounded. It is not any real deep pain but you are aware of it. Hope it's the chemo winning!

Date: Tue Apr 4, 2000 2:08 am
Subject: CSCGPII DIARY FOR THURSDAY MARCH 30TH

A long day! Did, however, sleep thru the night and had to be woken up by Lisa. Still no need to shave and hair is falling out a little faster. We work at unloading and setting up our booth from 8am to 6pm. Don't need that much time, usually, but we have a new line, and we take our time. Another leisurely dinner with other show people. My taste seems to be back so I have a beer and use pepper and barbecue sauce with dinner. Pretty tired but get a little TV in before conking out. A note: After taking the Big Drip, I was a little less than thrilled to read in the Chicago Tribune and USA Today, about long term memory loss from chemotherapy. Maybe by the 2nd cycle, I will have forgotten the 1st?

Date: Tue Apr 4, 2000 2:19 am
Subject: CSCGPII DIARY FOR FRIDAY MARCH 31ST

It's Showtime! Feel OK upon getting up and no need to shave today either. Show hours are 10am to 9pm and add 1 hour for us to get booth open and we have a long day ahead. Traffic is a little slow, which is typical for spring shows, anymore. A long day made even longer by late dinner after show closes (show food is the pits, everywhere). I seemed to tolerate it well and nothing unforeseen intruded but it sure felt good to climb into bed tonight. I had started to feel a little sore in the afternoon but a couple of Tylenol took care of it.

Date: Tue Apr 4, 2000 3:34 am
Subject: CSCGPII DIARY FOR SATURDAY APRIL 1ST

A strange day! Happy April Fools Day. (yes I know I dated Wednesday wrong. memory loss?) Woke up feeling pretty good. Even shaved off what little stubble that grew in 3 days. Another 9 to 9 day. Traffic at the show was pretty slow and by noon I was feeling really tired and so I went back to the motel and took a nap. A couple of really strange dreams but I slept to 3. Back to the show and with a few Tylenol I got thru the rest of the day. Hair falling out with more regularity every day. I guess the previous two full days took their toll because I felt really drained most of the day. Nothing feels really bad but just kind of blah!

Date: Tue Apr 4, 2000 3:45 am
Subject: CSCGPII DIARY FOR SUNDAY APRIL 2ND

A weird day on the medical front. Got by with my hour loss of sleep, but by the time we got to the show, my mouth felt like it was coated with chemicals. Also, a slight swelling and some pain, if I move a certain way, in the left neck alongside my Adam's apple. The chemical taste lasts all day but does not affect food taste, which is still about normal. Hair falling out is now a pain in the a__. It was a tiresome day otherwise. Last days of shows seem to take forever, but we got thru it, packed our stuff and tarped it to pickup tomorrow morning. Another Chinese dinner at 7 and some TV in the room and then off to dreamland.

Date: Tue Apr 4, 2000 9:43 pm
Subject: CSCGPII DIARY FOR MONDAY APRIL3RD

Going home! Up at the crack of dawn. Well, actually Lisa was, but since I no longer have to shave or wash and dry my hair, I get to sleep later. The chemical taste is gone but neck swelling is still there. We pick up our goods at 9am at the IX Center and start the 340 mile trek home. Even stopping for a quick pasta lunch, but with gaining an hour back, I get thru downtown Chicago (we live on the north side, 5 miles west of the lake) before rush hours kicks in. We arrive at 2:30. Haul in luggage, play ball with my dogs, unhook the trailer, read a little bit of the newspaper and decide a nap is in order. Rest of the day and evening, with dinner from the hot dog joint, is spent wading thru 5 days e-mail and the great non-medical debate posts. And getting my own 5 days of diary posted. Also spend a little time keeping up with the NCAA championship game. Must be a little recovered because I am up til 12:30. So along day comes to a close.

Date: Thu Apr 6, 2000 2:03 am
Subject: CSCGPII DIARY FOR TUESDAY APRIL 4TH

Ahh, Spring in Chicago. It was snowing this morning as I went out to fetch the paper. Good to be able to attempt the crosswords after a 5 day layoff. I took care of my long strands of falling out hair. Got out my handy dandy electric dog trimmer, put in the 1/2 inch bar and stood in the shower and hacked it all off (now not only a chemo sissy but GI Jane). At least it now falls out in small pieces. Went to the supermarket, had lunch and felt tired enough to take an early afternoon nap. Napped from 1 to 3. Rest of the afternoon spent finishing off e-mail and posts accumulation. Had a good dinner with Lisa and then we watched a movie together (unheard of since we disagree on most movies and all TV shows). "The Sixth Sense". I was surprised I stayed awake since it was pretty tedious till the last 5 minutes when it all made sense. Then Lisa off to watch "The Soprano's" while I caught the news. So I find out I have to stop drinking milk since calcium can cause prostrate cancer. I usually don't drink that much, but have had 3 gallons in last 2 weeks as part of my liquid regimen. Then off to bed a little early for me. Medical notes: I received my 1st week of bills for the chemo. Now I know why I call it The BIG Drip. Docetaxol (taxotere) 20MG $10,276.95 Inject Filgrastim,480mcg (in cancer center)$651.40 Inject Filgrastim,480mcg (in ER weekends)$933.17 Blood tests (in Cancer Center) approx. $200.00 ea. CT Scans $2,300.00 And of course the usual mumbo jumbo items tacked on. So from 3/13/00 to 3/25/00 bill is $19,000.00. My HMO may be having 2nd thoughts about our relationship.

Date: Thu Apr 6, 2000 11:07 pm
Subject: CSCGPII DIARY FOR WEDNESDAY APRIL 5TH

The second cycle begins. Memory loss must be kicking in because I am having a tough time with the crossword the past 2 days. Have to eat early to start the 8AM & 8PM steroid regimen. In the scheme of things, I think the steroids and blood booster shot to fight side effects gave me the most side effects. Spent most of the day working on business matters. Mundane stuff like refilling printer ink cartridges, making price lists, etc, etc. Then out for the now traditional pre-chemo dinner with Lisa and the girls. Ate and drank like the guinea pig I am. Spent most of the early evening answering a ton of e-mail and the late night watching bad TV. Thanks to the steroids, I did not turn in till 2PM! A note on yesterday. One more reason I needed my nap. The daylight time change at my house involves 70+ clocks and 30+ watches and assorted battery replacements. Fun twice a year.

Date: Sat Apr 8, 2000 1:30 am
Subject: CSCGPII DIARY FOR THURSDAY APRIL 6TH

A comedy of errors. Went to bed at 2AM and awoke at 4:45AM. At least the paper had been delivered so I had something to while away the time. Had to make up some kind of breakfast, again, for the steroid intake. A power shake (milk, mixed berry yogurt, banana, instant mocha breakfast powder and ice) and peanut butter on toast sandwich. Yum, Yum. Puttered around and took off at 9:45 to go to Cancer Center. Got another newspaper to read after I updated my diary to keep me busy during the Big Drip hour. No parking in the center lot so I had to valet it (yes both my cancer centers valet park). Then I could not find my glasses and didn't have enough time to go home and get them. Decided that with less than 3 hours sleep I could take a nap (I do have some ability to get myself relaxed enough to nap during CT's, MRI's and even in dental chairs while being drilled) (my blood pressure during Big Drip was lower than my normal). First stop is blood room and I’m poked for the 1st time in a week. Then wait for my onco and get a little restless since I can't read anything (my right eye is a little worse than left because of nerve damage on that side, or else with my long arms I could have read something). Finally in with the onco and 1st cycle evaluation. Did good. Only lost 1 1/2 lbs. and am still a little overweight (I am 6' and normally 162 to 165. 168.5 today). My face is very red from the steroids but all the other sides are gone. Even neck swelling and pain are back to nothing. The real good news is that my doctor thinks the big tumor in the liver has shrunk (for the first time during my teeth brushing, stubble feeling, get ready to shower routine, I felt around my liver pretty good (front of abdomen, just below rib line) and got a feeling for the tumor, but since it was 1st for me I had no idea whether bigger, littler or same. Also noticed my face was full on many seemingly new small wrinklely areas on left (good) side. I am hoping steroid related. Then off to the treatment room and hookup to the IV and saline. Nurse off to pick up the Big Drip and twenty minutes later I'm ready to send the St. Bernards after her. When she finally returns, I ask what happened and she tells me the pharmacist put the Taxotere in a bag (like saline solution) and then decided it needed to be in a bottle. This is strange since my 1st Big Drip was given to me in a bag. So now I have a medical mystery for the day. For $10,276.95 I think they should get it right the first and all other times! I will find out the answer. Stay tuned. So I'm finally on the pump and Big Drip is dripping and I'm drifting off into La La land and I hear a faint beeping in the background but I ignore it, thinking it is from patient on other side of curtain. After 10 minutes I come awake enough to realize it is my pump stopped. Now we go thru 2 pumps, much hand pumping, 2 new syringe pumpings until finally some one turns valve and lets the air in line out. So last 10 minutes took 35. Probably be $12,000.00 for the extra time. Finally back home to have Lisa send me running errands all around town. (note: found glasses between seats in the truck - that frosted me) Catch some news and do some posting before dinner. Dinner OK with split pea soup and leftover Greek spaghetti (burnt butter and cheese for sauce) with sourdough bread. Catch up on the e-mail, watch "Millionaire" and nothing after that interests me and I'm off to bed at 9:30 to try and get some sleep back.

Date: Sun Apr 9, 2000 1:00 am
Subject: CSCGPII DIARY FOR FRIDAY APRIL 7TH

As noted yesterday, I did sleep thru the night from 9:30pm till 5 am today. Actually the sides from the steroids seem a little less than the last time. Only real problem, so far, is that I seem to be hitting about twice as many wrong keys when typing. Handwriting is a little shaky, too. Spring is leaving as the weather man is calling for 2 to 4 inches of snow tonight. So I'm off to the supermarket to stock up. Nahh, had to eat anyway. I pack up a few orders to ship out to pay for the food. Lisa and I go out to buy some merchandise to pack up to ship out Monday. In the late afternoon we lock the dogs out of the bedroom and have a massage with oil session and some other things until the dogs insist on coming in to play, too. Dinner, ok, with usual soup and jumbo hot dogs and cauliflower. Watched the news and some of "Dave" and hit the sack.

Date: Tue Apr 11, 2000 3:57 pm
Subject: CSCGPII DIARY FOR SATURDAY APRIL 8TH

Morning mouth is back. The pasty film and slightly off taste of food are the only sides, so far, of the 2nd cycle. I went to the ER and had my first blood booster shot. Being a Saturday, with no shows to participate in, I took it rather easy. We dodged a bullet and only got 1.7 inches of snow and ice last night. 30 miles north and it was almost 5 inches. However, in cleaning off the truck in the cold, both my thumbs and index fingers developed cracks in the tips and I'm typing and writing with band aids on. The tips feel a little dull, from the chemo, so it's almost like working with heavy gloves on. I got food down, but it does not taste very good. Took no naps so I was off to bed after the news.

Date: Tue Apr 11, 2000 4:11 pm
Subject: CSCGPII DIARY FOR SUNDAY APRIL 9TH

After getting up in the morning, later and later, the 5am daily wakeup is starting. Sunday paper always comes later, so I was forced to keep working on the dreaded, big words, Saturday crossword. I fiddled around enough, that I didn't get to ER until after 9am. So far it has always been pretty quiet and I have gotten in and out in 10 to 15 minutes. Food tasting lousy and so I make a huge shake (milk, chocolate malt powder, yogurt, peanut butter, raspberries, banana, and coffee) and drank that goo. Then Lisa came back from shopping with bagels and cream cheese and I got one of those down, too. Then came the crash. I spent the rest of the day and evening in my lounger. Absolutely no energy at all. I didn't even feel that bad. Took no Tylenol or anything. I just could not summon the strength to get out of the chair. The only escape was I did eat dinner sitting in the kitchen but then right back to the prone position. Just napped and TV'ed the whole day away. The only new symptom is the rash on the left neck area is starting to come back.

Date: Tue Apr 11, 2000 4:30 pm
Subject: CSCGPII DIARY FOR MONDAY APRIL 10TH

The crash continues. Rash has spread to shoulders and starting to creep down my back. Finger tips still feel leaden. Joint ache does not seem to be as bad as 1st cycle, but I am having a tough time keeping my eyes focused on anything. I was up at 4:45am, again. Got to the cancer center at 8:30 for the blood tests and booster shot, but felt shakier this time around. I was able to get to store for more note paper and pack up 3 orders to ship out today. However, the rest of the day went the same as yesterday. Just lay around dozing and catching snatches of TV. Finally went to bed around 11pm, hoping for a better tomorrow. Wish I could find something that tasted halfway decent.

Date: Thu Apr 13, 2000 4:55 am
Subject: CSCGPII DIARY FOR TUESDAY APRIL 11TH

What a roller coaster ride. Felt better and felt worse. The day started off at the usual 4:45am, when I couldn't sleep any longer. Between crosswords and catching up on diary writings, I got to the time to get a shot. Still felt a little shaky, but better than yesterday. I decided, early on, I would take Tylenol every 6 hours, just to see if I could boost my energy level. I was going to run out of them, so part of the morning spent in a drugstore and a couple of book stores, looking for interesting reading. Came home with drugs but no books. Unlike the previous 2 days, I was able to function, albeit rather slowly, throughout the rest of the day. We all have our family and friends, doing their utmost, to help us thru these toughest of times, but bottom line is they don't have our ACC. Even my wife, bless her little "eat, eat" heart, can't know the turmoil that can strike at any moment. The mouth film seems to be getting a little better. The rash is spreading on shoulders and back, at a pretty good clip. Looks like it will be worse than last cycle. Joint ache is really pretty minor at this point. 4 finger tips have healed (used hydrocortisone cream, for rash too) but still feel a little numb. Maybe dull rather than numb. Food taste still not right. Shakes, coffee, ginger ale, bagel with butter, chicken broth with rice, peas and carrots was today’s diet. Lisa and I watched "Millionaire" and a movie for evenings entertainment and off to bed after the news.

Date: Thu Apr 13, 2000 7:06 pm
Subject: CSCGPII DIARY FOR WEDNESDAY

Terrible night. Could not sleep. Was up at 12:15, 2:45 and finally up for good at 3:45. Could not get comfortable, back itched and felt like I had a mild case of heartburn. To add insult to all the spare time I had, the crossword and jumble were so easy, I finished them in 20 minutes. I was forced to use trash and flash (The Sun) crossword for a diversion. Blood test and shot at 9am and then home to pack up some more shipments. Was feeling better, but tired, so I went off to lunch with Lisa and her sister. Finally ate like I was starving. Gyro's and fried eggplant with garlic mashed potatoes. I think that was a mistake. Slowly went downhill the rest of the afternoon. Did, however, make a run to the store for some items and home and a nap before dinner. Could not eat. Just did not want food. Then lay in the lounger and slept till 10pm. Nothing good on TV and retired around 12:30am.

Date: Fri Apr 14, 2000 5:53 pm
Subject: CSCGPII DIARY FOR THURSDAY APRIL 13TH

Was up at 1:30 and 3:30 but finally slept til 6 when Lisa took the dogs out. Pretty much fiddled the morning away with crosswords, writing, and running errands. Had 11am appointment at the Cancer Center, for shot and evaluation by my doctor. D-Day is now 4/20/00. I will have CT scan next Tuesday and we discuss results next Thursday. Nothing is abnormal, minor sores on roof of mouth (I don't really notice), rash is a good one but starting to clear up. I check white cell count hoping to get out of weekend shots, but it will take a miracle. White cell count is 900 and I need 10,000 to stop shot. Did lose about 8 lbs (159.5). Medical mystery about Big Drip bag/bottle is solved. My RN takes me to the pharmacy to get to the bottom of this. Pharmacy is in construction area and trainee (why me?) is on hand helping. Docetaxel needs to be in a special plastic bag (reacts badly to regular ones) or a glass bottle. They don't like using glass because of potential breakage. Trainee put in wrong bag and then used glass not knowing about special plastic ones. Anyway, pharmacist assures me that corrective measures were taken and I will have a fine flowing special plastic back next time. We'll see. Lunch time, when we get out. Lisa was along (wanted to see if she could get some speed for me so I wouldn't feel so tired. Saw drug ad on TV. Dr. told her that was red cell medicine and more worried about white so let me sleep) and we stopped at a pancake house and I got a couple of thick pancakes down. The rest of the day and evening spent lolling about. We did hire a landscaper to spring clean and then mow, weekly, the yard until I have more pep. I got down scrambled eggs and toast, plus some chicken rice soup, for dinner. In and out of naps the rest of the evening.

Date: Sat Apr 15, 2000 2:24 pm
Subject: CSCGPII DIARY FOR FRIDAY APRIL 14TH

What a day. Never did make it out of my lounge chair last night. Slept thru until 4am and then was up for good. Luckily, the local paper came Thursday, so I had reading material until daily 'Trib' arrived at 6:15am. I was off for blood test and shot. A miracle after all! White cell count went from 4 on Wednesday to 24 this morning. No more shots, including today’s, this cycle. I had resigned myself to going to the ER and feeling blah over the weekend. But that sure gave me a positive lift, that my body, could still fight this thru! I was so elated that I went home and made a special treat for myself (and keep Lisa at bay about eating). Can't remember how I started but I love fried egg sandwiches with mayo (lots) and cheese when my taste is right. I even have a cast iron skillet, square shaped, the size of a slice of bread. Usual method is to whip up an egg, mayo, milk, cheese, water, salt and pepper to make a mini omelet in the skillet. Then put between two slices of bread or toast with more mayo. Omitted cheese, pepper and extra mayo this morning. Over the past few years, in deference to undesirable cholesterol, I had stopped making them. So even if the taste was not 100%, it sure felt good to eat one! I still felt weak and so I really didn't do much the balance of the day. Ran off some printing for the business and was able to do some surfing around on the computer but spent most of the day/evening reading and watching the Cubs and Sox play. Had a dinner of pork chop, mashed potatoes and corn. Corn tasted good. Dozed off for awhile, in the late evening, but hauled myself to bad around midnight. Rash is drying up and itch is subsiding. Have occasional flare up of heartburn like sensation in the middle of the chest and I'm burping a lot for me. Finger tips still feel dull. Hair is still falling out, but I retain enough so no one can really tell. Beard still 3 o'clock stubble after 3 days not shaving. Also my face has been very reddish (windburn look) the past few days, with dry skin peeling off the left side.

Date: Sun Apr 16, 2000 8:06 pm
Subject: CSCGPII DIARY FOR SATURDAY APRIL 15TH

I had higher hopes for today. I was up at 4am and thank goodness the paper was here and I had something to do. The whole day just seemed to move in slow motion. I would gather energy and do something and then have to rest for awhile. Ended up watching the NFL to see who the 'Bears' were picking and when they weren't, I tried to do something constructive. Lisa has been on a spring rampage, the past two days, because of her upset about my treatments. She says she doesn't think she could go thru what I am, if she was put in my position. My reply, is that until you are between the rock and hard place, you won't know what you are capable of. I didn't think I could either. Anyway, she has been buying flowers and new bright bed coverings and cleaning like a mad women (hard for her to do since she already goes overboard) (when we first lived in the same house, trash in wastebaskets was a no no. I had to go out and buy covered waste cans to stop dozens of trips to the garbage can). I am sorry I'm not being much help right now, but things should be better long term? I keep trying stuff to eat, always hoping to find something that tastes great! No luck so far. The weirdness of the day explained by one incident. Day started with bright sunshine and warm temperatures rising into 70's. I agreed to do the grocery shopping (looking for something good) and set to supermarket about 1:15pm. It was bright and 74. After an hour of shopping (buying all kinds of stuff I hope tastes better) I lugged the groceries to the truck in stiff, cold, moist wind. It was now 52 with wind howling off lake. We ended up losing 28 degrees in an hour and spring left, too. Aah, Chicago. Spent the evening channel surfing and finding nothing of real interest, dragged myself to bed at 9:30pm.

Date: Mon Apr 17, 2000 5:40 pm
Subject: CSCGPII DIARY FOR SUNDAY APRIL 16TH

Actually slept thru the night til 6:15 this morning. A dark, dreary, damp, cold and windy day here in Chicagoland. I sure could use some sun and warm temperatures. My luck, after a winter of higher than average temps, I start chemo and temps average 10 degrees below normal. The entire day is spent lazing around indoors. Read twice as much Sunday paper than I normally do. Watched too much TV and kept trying to eat little bits here and there to find something really good. No luck yet. I had been excited about seeing the Discovery Channels special "Walking With Dinosaurs" but even that was a little disappointing to me. Too many commercials for a cable channel and I guess for me, not enough species and information. Oh well, most super hyped movies leave me the same way. Hoping for sun tomorrow!

Date: Tue Apr 18, 2000 3:39 pm
Subject: CSCGPII DIARY FOR MONDAY APRIL 17TH

Still no sun or warmth. Cloudy, damp and 41 degrees all day. Did get some much needed rest by sleeping thru til 6:15am. Only had to go give two vials of blood today. The balance of the day just spent drifting along. It is difficult to explain. There is no real sharp pain or any striking discomfort you can point out. It is an out of joint, woodenesque feeling. Every short burst of activity and then you feel a need to return to a hazy level of laying about. So much to get done but tomorrow will be better. I enjoy doing the yard work around the house, but today I was content to watch the two guys, we hired, spend 4 hours doing our spring cleanup and didn't feel a bit guilty at all. Of course we now have to work to pay them, but I will do that next week? On the physical side effects front, rash is pretty much gone, beard growing even slower (no shave in 4 days), hair falling out steadily but slowly, face still red and feels really dry and rough. A slight gaseous feeling, spaced by mild burping and heartburn like feeling in the lower lungs, central chest area. Acts up mostly when eating or getting up from lounge chair or sitting awhile. Eye focusing for any length of time still not possible. Plus food taste still a little off. After my treat of the day, a big jug of barium sulfate for the CT tomorrow and I'm off to bed a little after midnight. Tomorrow, again, a better day?

Date: Wed Apr 19, 2000 7:56 pm
Subject: CSCGPII DIARY FOR TUESDAY APRIL 18TH

The gaseous bloat from the barium sulfate forces me up at 5:45. A long morning of trying to keep busy, since the CT scan isn't until 12:30pm. To say the nerves are on edge for this one is a big understatement. In and out in less than an hour and now the wait until Thursday at 11:20 (maybe 11:30, could be 11:40, more like 11:55) to receive the readings. Recovery seems to be in full swing and the rest of the day I feel much better than the previous one's. Don't really mind there's still no sun and temperature doesn't hit 50. Taste is almost all the way back and even start my late evening ice cream break again. Maybe a beer tomorrow, to celebrate!

Date: Thu Apr 20, 2000 2:42 pm
Subject: CSCGPII DIARY FOR WEDNESDAY APRIL 19TH

It was tough to keep the nerves in check today. I got thru the night okay. My normal get up time is 6:30am on non working (show) days so 6:15am is alright. One little blood test is all the schedule calls for and the rest of the day is mine. I try to forget about tomorrow but it is not that easy. I probably don't show it but inside my mind that white lighted square in every Doctor's consultation room, leaps into view with a film being slid into place. That is when I will myself into thinking some other thought. We get around to gathering and packing 6 orders to ship out. I am, also, exiled to the local Deli to get gelfite fish and kreplakh for the family Passover dinner tomorrow night. (Background note: Lisa is Jewish, 4 stepdaughter's half Jewish, granddaughter one fourth Jewish and myself, Jewish by osmosis) ( born WASP, but have settled into my own, pretty much, agnostic niche.) I tell Lisa, upon my return, that next year she goes to the deli and I go to the grocery! But then I tell her that most years. I finally feel good enough to clean up my desk (Lisa keeps carping about my slobbish ways) from all the papers I had strewn about the past few days. Taking out the trash after dinner, I make a sad discovery. A Mother Dove has had her nest blown out of a tree and I find 1 intact egg lying on the ground. (I have to say this particular Dove is very stupid) She has for the past 3 years nested in a hanging flower holder by our most used house entrance. This year I hung, what I thought was a better one for her, but she ignored it. Anyway I changed the holders around and put her nest and egg in it. We shall see what happens! Still no sun or warmth around here and in fact it rains all day. We need the water but it sure is dreary out. Watch hockey and baseball, then nap because "Law and Order" is a rerun. I guess I can eat hearty tomorrow since my first beer in a couple of weeks and even horse radish didn't taste too bad today.

Date: Sat Apr 22, 2000 4:17 pm
Subject: CSCGPII DIARY FOR THURSDAY APRIL 20TH

Crash. High expectations meet reality. After my jibe of waiting for Doctor's, he is only 10 minutes behind schedule. Sorry. We do the mundane, weight is still 159, temp is normal, even my blood pressure is normal. (even with all the high hopes, I try and maintain an even keel. Never getting too high at good news, nor into deep depths with bad.) Now the results! The large liver tumor that grew from 4cm to 6.9cm, the eight weeks prior to chemo, is now stable with no new growth. All the other mets in the lungs and liver remain inactive. It looks like a necrosis (disintegration of the tumor center) has started in the large one. But caution; this sometimes happens, on its own, in larger tumors and not as the result of chemo drugs. So there we are, stopped the aggressive one but no change in the balance. I am deflated, but I signed on to defeat this malignancy, so forward we shall go. We are taking 2 more cycles and then checking again. And hoping for more positive results! I ask to delay the second round for one week so I can help Lisa get set up for the opening of Shipshewana Market for our summer season. (Shipsie is a huge, 900 vendors, outdoor tourist market, auction and small town shopping Mecca in northeast Indiana along I80-90.) It's all right with my doctor but we have to check the trial protocol before final okay. I will know tomorrow. Other than the so-so news, the rest of the day went very well. Weather still sucks (storms and cold all day except from 1pm to 3:30pm, when sun came out and temp to 62 degrees. Then storms returned and back into 40's). Stopped and had a big breakfast after cancer center visit and bigger Passover dinner with the family. I feels good to have food taste almost normal again. Went to bed tired and sated but determined to beat this stain in my body!

Date: Sat Apr 22, 2000 5:47 pm
Subject: CSCGPII DIARY FOR FRIDAY APRIL 21ST

After effects. The strain of yesterday took its toll today. Woke up feeling overloaded from all the food I packed away, but otherwise the morning seemed to go along smoothly. Last blood test this cycle and okay to start round two a week later. Except for the clouds and wind chill in the teens, day was off to a good start. The birds, Marilyn the Dove and Rosy the Cardinal, were building their nests in their hanging baskets of previous years. Pete the Redwinged Blackbird, (named for Sneaky Pete, since if you turn your back, when Mama is on their eggs or babies are about, he will dive for the back of your head. You feel the wing flap and wind as he zooms by.) was flying about overseeing all that goes on. A little after noon and all the oomph went out of the day. Needed naps and just had no energy or desire to do much of anything. Couldn't even muster strength to post already written diary page for Thursday. So I basically frittered the day away. I allowed myself, I think, to build up too much hope that this relatively mild 6 week session would cure all that ails me. The real world showed up and put me in my place. The road ahead is still not paved smooth with no detours. As I write this, Saturday has dawned with sun and warmth and spring is finally here! I feel a whole lot better and ready to continue the struggle in two weeks. Now, I shut down the diary until Wednesday May 3rd. Lisa and I have lots of things to get done and we will be away much of that time. Only minor side effects remain, slight tingling in the fingers, some skin roughness from the rash and not quite 100 percent taste, but I feel ready and able to get some things done. So till May 3rd, Ciao!