Date: Fri Mar 17, 2000 11:25 am

Subject: CSCGP(Chemo Sissy Club Guinea Pig) Diary

Monday 3/13/00 Only preliminary tests to take but still a big snafu. I was told to come in for 3 tests at 10AM. Arrive at 9:45 to find them all scheduled for 10. No phone or mail notification either (at least my last medical facility was good at that part). No one seems to want to make a decision, so I tell what I will do. I go and have my blood work done since their is no line. All goes smoothly (I have huge veins for them to stick needles in, a real plus), except nurse keeps all the paperwork I was given. She says they were all for required blood tests. I still have HMO referral for CT and EKG so its OK. So off I go to CT Scan. There I find I should have come in last week and got some barium to take Sunday night and Monday before coming. So I have to go into 2nd option mode and I am given a glass of goo to drink at 10:30. Then given 2 syringes to put into juice and take at 11:30 and then get the scan at 12:30. I tell tech to give it to me to go. So I'm now off to take EKG. Here the tech has a fit because I have not been to central registration (checked in thru Cancer Center as always) and CT dept. has kept all my paperwork. Spend 20 minutes waiting while this Tech is told by everyone to give me the test and they will straighten it out later. Once wired EKG takes 20 seconds. Now go home (live 10 minutes away, another plus). Mix up a batch of goo and drink at 11:30. Kill time and return to try CT again. All goes smoothly and I am back home at 1:22. So 1 hour of testing took 3 hours and 40 minutes and 2 parking fees (don't get me started on patients paying to be guinea pigs!!!). Now the wait till Thursday at 10AM and the Big Shot begins. Have to start my ST. Pat's day party early. CSCGP

Date: Fri Mar 17, 2000 1:14 pm

Subject: CSCGP Chemo Trial Diary II

Big Snafu number 2. The Big Shot is postponed for 1 day since I was to have taken steroids yesterday. Not having been informed I hadn't. So we try again Friday 3/17/00 at 11:30AM. Not what I had planned for St. Pat's Day. After checking we find that, the trial coordinator has left the hospital (unknown to me as to why, but give me time) and my onco's nurse was off in Feb. and that is why the lack of communication. I hope things go smoother because snafu #3 and I will have to vent steam! However, we run thru the lab results and all are normal except the tumor in the liver, in 2 months, has grown from 4CM to 6.9CM. Better news is that carotid/ear canal tumor, radiated in Oct. 99, is not showing up on CAT Scan. Balance of small lung and liver mets show no change. General health is good and have no pain from liver, no elevated blood pressure (resigned to being abused) and weight steady (had been gaining). Trial coordinator and I go thru the side effects and testing to be done during and after the trial. Most were minor (maybe some nausea & likely numbness/tingling in tips of fingers & toes)(I need to self-inject in muscle or have nurse do it, medication for 7 to 10 days after Big Shot to raise white cell count to fight infections, the biggest risk)(Big Shot given once every 3 weeks)(2 Big Shots and then retest to see if tumor stable or shrinking)(If effective then we go on) Seeing no big downside except infection risk (guess no Frenching) I sign the rest of my life away. Only kidding! I can quit the trial at any time but they would like to follow me the rest of my days. Oh yes, more good news! If I can stomach it I may have my daily beer ration. So off I go for my steroids. I take the day before, day of & day after The Big Shot. More Tomorrow. CSCGP Steve

The Big Shot is now The Big Drip! Arrived at Cancer center at 11:15AM to run thru the schedule of chemo, white blood cells booster shot and blood work. Being a trial I have to take more tests than is normal for approved amounts. The schedule in 3 week cycles goes like this: Day before, of and after the chemo take heavy duty steroids. Day of chemo weight, blood pressure and general health. 2nd day after chemo and from 7 to 10 days, thereafter, take shot to boost white blood count. These can be self given like insulin in muscle. 3 times weekly have blood work done. Finally the moment I feared most. The procedure was done in a nicely appointed individual examining room. I sat in a lounge chair with my coffee, crossword puzzle and my wife (Lisa) sat across room reading. I was hooked up to saline IV and automatic blood pressure cuff. Then nurse was off to get the good stuff mixed and warmed. 10 minutes later she was back and The Big Drip was started. During the next hour, I worked and completed my crossword, took anti-nausea pill w/ cranberry juice, drank coffee, kept calming my wife down and was enlisted into another trial about effects of disease and treatment on my expectations and goals (that is why guinea pig II in title) filling out their forms. Then the IV was pulled, The Big Drip was over! I was given times for shots and blood work and the wife and I were off to lunch. I drove! It is now 10PM and after having a steak and potatoes dinner I have felt nothing from the chemo. Only effects I have are a red face and some facial warmth from the steroids. In true St. Patty's fashion I took my dose this evening with a Killian's and a get well toast to all our members! To be honest, most side effects from chemo take from 48 to 76 hours to start. Will keep you informed daily I hope. If all goes well, the balance is as follows: Take 2 cycles. Have CT scan. If liver tumor and balance of mets have shown no growth or receded then we go on. If they are still growing then we stop and I pursue other methods, ie surgery or radiation. If we go on then we keep going till it stops working with CT scans after every 2 cycles. If it goes away completely then 2 more cycles and its over! Now off to bed since between my steroids, my wife's nervousness and my 3 dogs I only got 3 1/2 hours sleep last night. CSCGPII

Date: Sun Mar 19, 2000 4:10 am

Subject: CSCGPII DIARY FOR SATURDAY MARCH 18TH

Pretty uneventful day, this first day after The Big Drip. Slept from only 1AM to 5AM (the steroids). Got my coffee going and did my daily crossword solving. I hate Saturday's puzzle, too many big words. (the Chicago Tribune-tempo section) Then re-read all my trial info to get it fresh in my mind. The steroids are to prevent fluid retention to help flush out the kidneys. I took the last tonight until the next cycle. The shots, starting tomorrow, are to boost the white blood cell count to hold back infections. Still no noticeable side effects from the Taxotere (Docetaxel). I am to take plenty of liquids and 6 small meals a day avoiding spicy and greasy food (all my favorites). Just a note: I did find out what happened to my original trial coordinator. She had child care issues and retired for a spell. I did normal stuff all day. Hacked around on the computer, chatted with the Sisters of Bloat, put in a new circuit breaker for my family room, watched some B-ball, ate only 4 meals but kept up with the liquid intake. Snafu #3 is shaping up but won't be resolved until Monday's diary (such suspense).

Date: Mon Mar 20, 2000 2:21 am

Subject: CSCGPII DIARY FOR SUNDAY MARCH 19TH

A little more sleep last night as from 12 to 6:30. Did my usual coffee, read Sun paper and then the crossword (95% of Sun - pretty good for me). Went to the hospital emergency room around 9 for the 1st of my booster shots. Took about an hour but that included 10 minutes to see if I reacted to 1st one (didn't) and 10 minutes more to finish magazine article I had started. Got home and did Cheerios for food and then went office supply and grocery shopping with Lisa. Back home and made power smoothie to satisfy liquid and protein needs. Spent the rest of the afternoon installing and trying out a new All-in-one printer for the computer to upgrade for our business. Time outs to play with dogs, catch some B-Ball tournament action, etc, etc. Had dinner, soup, fish, bread, cukes and tomatoes. I can't hack 6 meals a day. Too much time wasted. Will have some cherry pie later. No side effects from shot. Some residual from steroids but are receding and I'm off them. Nothing yet from The Big Drip. On the outside but we hope something on the inside. Not much sleep tonight because I'm up at 5AM to get to my far southwest surgeon for a checkup. My HMO loves me as I keep changing systems to get treatment!

Date: Tue Mar 21, 2000 11:22 pm

Subject: CSCGPII DIARY FOR MONDAY MARCH 20TH

A very lethargic day! I had to get up at 5AM for early ENT surgeon's appointment. Thanks to Chicago traffic took 1 hour and 20 minutes to get there and 45 minutes to get home. All is good w/surgeon and return in 6 months. MRI and radiologist in 2 months. Had bagel and read balance of paper and then puttered around office making catalogs. I have some muscle and joint aches and do feel tired. I think The Big Drip kicked in! Lisa and daughter were out shopping and called to meet them for lunch. Off to Jewish Deli: mish-mosh soup (chicken broth, rice, noodles, kaisha, krepluch, motza balls)(6 bucks for soup?) chopped liver and other stuff. Ate pretty good. Then home to take a nap. 1st nap in four days and it felt good. Then off to Cancer Center and blood work and blood booster shot 2. We just sign in and get blood work forms and go 20 paces to blood room. Usually empty or 1 other waiting and so we are in and out quickly. Then hit the waiting room for a couple of minutes and they call u for the shot. 15 to 20 minutes and you're out. Less shot only. It is very informal and cheery and there are lots of others coming and going. My trial coordinator informed me that the muscle and joint ache is from the booster shot. It stimulates bone marrow growth and that is what is pressing on joints. I really feel it where surgeries were done. Not sharp pains, just dull achy. So, still nothing from The Big Drip. All side effects from the add-on meds. Oh, well. Back home and have another nap! Another daughter and the granddaughter come over for dinner. Got down the rest of lunch's soup, 2 cheeseburgers sans buns, and some kernel corn. I packed on a few pounds to get ready for this so I won't waste away. Usually have ice cream before bed. Worked with daughter tweaking up the computer and the balance of the evening spent napping and watching TV.

Date: Wed Mar 22, 2000 10:10 pm

Subject: CSCGPII DIARY FOR TUESDAY MARCH 21ST

Slept better last night for a change. Might have been good except for a sick dog going out every 3 hours. English muffin w/ orange marmalade is today's change. Did crossword in 30 minutes (must have been easy one, huh), but Jumble vexed me all day. (do jumble only if I finish crossword, usually)(if crossword is too tough, I quit, and do jumble) Due at Cancer Center at 9:30 to get shot. I'm not too fond of previous afternoon, next morning but it can't be helped. Spent the balance of the morning writing a few letters and doing yesterday's diary (was doing it before bed but lack of sleep caught up). Just beet borscht and sour cream w/ crackers & milk for lunch. The afternoon is spent working on items for our business, quick checks around the web for e-mail and messages, 11/2 hour. Dinner was clam chowder, chicken breast (whole roasted not little boneless things)1/2 yam, some cukes and tomatoes w/ glass of milk. 1/2 pint of Ben & Jerry's later that night. I have stopped my daily ration of beer. Dr. said I didn't have to but it could do more harm than good. Lay down on couch to watch TV and when the Millionaire was over so was my day! Slept thru the night with only 2 let me out from the dogs. Note: There will be a supplement for today’s diary posted separately. I am going to list all the side effects that can occur with my meds and tell you what is affecting me and how. This will give you an idea about the medicines and there reactions to a large group and just 1 person. See you Wednesday.

Date: Fri Mar 24, 2000 2:30 am

Subject: CSCGPII DIARY SIDE EFFECT SUPPLEMENT

I will list the drug and the effects as they are on my trial sheet. I will give you yes or no and what the effect on me is. Dexamethasone (steroid)(stops fluid retention) More common: indigestion - no nervousness, restlessness, trouble sleeping - yes, all were felt. increase in appetite - no remained normal elevated blood sugar which could aggravate diabetes - no less common: loss of calcium from bones, possibly causing bone fractures - no broken bones yet weight gain and fluid retention - no weight same and fluids just run thru me. muscle wasting and weakness - no acne, rash, changes in hair & skin - yes started rash yesterday but all 3 drugs can cause rash, no to rest. increase risk of glaucoma and cataracts - no to this point. menstrual problems - no stomach ulcer - not yet increase in blood pressure - no staying pretty steady. increase in white cell count - offset by loss using docetaxel. increased susceptibility to infections - no, at least no infections at this point. elevated moods, depression, psychosis - no, my wife may think psychosis (who's watching?) rare: increased facial hair growth - no, thank goodness. increased sweating - no vision problems, including bulging of the eyes - yes, trouble focusing and feel some pressure inside but no bulge. Taxotere (Docetaxel) More common: lowered white cell count risk of infection - yes but no infection so far. lowered red cell count risk of anemia requiring transfusion - no lowered platelet count which can cause bleeding - no, needles and shots show regular clotting. temporary hair loss which may be total - no, but it won't take much to lose it. mouth sores - no, but mouth feels like when you first wakeup and it lasts all day. Food taste a little off and spicy stuff irritates. skin rashes are common (severe in about 5% of cases - yes, back from neck to bottom of shoulder blade and left neck by Adam’s apple. nerve damage, causing numbness, tingling or burning sensations in hands and feet - no Less common: fluid collection in the body, especially in the hands, legs, and sometimes around lungs or heart which may result in difficulty breathing. Dexamethasone is given to help prevent this - no. color changes to finger and toenails may occur. In rare cases, nails may fall off - no. pain in muscles and joints - yes, not bad but there. headache, weakness, fatigue, loss of appetite - yes, weakness and fatigue, no to rest. nausea, vomiting and diarrhea - no, to all (thanks). abnormal blood tests of liver function - no. irritation of the eyes (conjunctivitis) - yes as noted earlier. Rare: allergic reactions causing skin rash, difficulty in breathing and a lowered blood pressure - no. skin irritation and swelling if drug leaks from the vein into the surrounding skin - no, but had no leaks. irregular heart beat, heart failure - no, still typing. liver failure (resulting in death) - sure hope it's no. intestinal bleeding and sudden death - see above inflammation of the pancreas - no, have no idea where it is, either. irritation of the esophagus which may lead to chest pain or difficulty swallowing - no. G-CSF (Filgrastim, Filgrastim) More common: pain in muscles, bones and joints, usually relieved with acetaminophen - yes!! Less common: redness, swelling, itching and pain at the injection site - no. Rare: allergic reaction, characterized by skin rash, itching, flushing, chest pain, rapid heart rate, and low blood pressure - no. elevation of enzymes found in the bones and liver - ?? minor changes in uric acid levels, which may worsen of bring on a case of the gout - no. rash, or worsening of a rash already present - well I have rash and it gets worse, for now. increase in size of spleen - CT to know. headache - no. flushing or low

Date: Fri Mar 24, 2000 2:54 am

Subject: CSCGPII DIARY FOR WEDNESDAY MARCH 22ND

Pretty good night! Long nap early, ice cream and TV around midnight and only 1 bathroom break (for me not dogs) till morning. Crossword done except for 2 words and jumble also finished. Bowl of Cheerio's and then off to the Cancer Center for the drawing of the blood and shot. Moving about like a little old man thanks to the joint aches. Nothing really hurts bad, it is just all the little aches. Take nap and wake up feeling good for 30 minutes and then start regressing till next nap. Bursts and slowdowns. Spent most of the day running off catalog pages for our business. We have to mail about 75 of them, around 20 pages each, in the next few weeks. Not hard but it sure is boring. Also spent time adjusting watch sizes for some of our retail customers. That was more difficult because of the eye pressure and focusing (see supplement). Had English muffin with extra chunky peanut butter and a tin of pineapple for lunch. During the early afternoon I started to get a rash on my back, covering the shoulder blades, and a spot on the left side of neck by the Adam’s apple. Not bad at the moment, like mild poison ivy. Dinner was late as we did invoices so we could ship orders tomorrow. Soup (lousy chicken noodle), pork chop, mashed potatoes and asparagus. TV & naps and that was balance of the day. This is exciting, huh?

Date: Sat Mar 25, 2000 3:10 am

Subject: CSCGPII DIARY FOR THURSDAY MARCH 23RD

All around a pretty lazy day. Just a note: I am taking 4 to 6 500mg Tylenol 2 to 3 times daily. No pain is very hurtful but feel weak and achy. Got thru the night and up at 7am, for my longest night of rest. Crossword and jumble both completed. Muffins and jelly for an uninteresting breakfast. Went to the office supply store and then took a nap after making some business calls when I returned. A couple of grilled cheese for lunch and then another nap. Off to the Cancer Center for shot and visit with Doctor to look me over. Doctor's report is that I'm doing good, rash probably won't spread more, but will intensify in the areas it now covers. Next 3 days will be the worst and if a fever develops I am to go to the hospital. Infection is the big worry. Then I will slowly recover to take the next Big Drip. Went grocery shopping on the way home. (No baggers and a new scan clerk - my luck). Dinner was a disaster. Tried to eat chili and the spices just killed my mouth. Had cheese only pizza to follow but couldn't get much down from mouth burn. A couple of hours on the computer and that was the end of day 6. Note: Another Doctor heard thru the grapevine of my testing Docetaxol and called my oncologist about his ACC patient. Date: Sun Mar 26, 2000 4:42 pm

Subject: CSCGPII DIARY FOR FRIDAY MARCH 24TH

Day off to a lousy start. Awakened at 5am by back spasms. Immediately gobbled 2 Tylenol and settled in with the crossword and coffee until they could take effect. Both Lisa and I were scheduled for the Doctor's and cancer center around 9am. We got ready to leave and our Tahoe would not start. Lisa ended up taking a cab to her 3 appointments and I waited for the tow truck. While waiting I had to pack and get ready to ship 7 packages for our business. This was quite a chore as I had a lot of achiness in the thighs and hip area. It was painful to move around. Lisa got back around 12:30pm at the same time as the tow truck arrived to haul the Tahoe to the dealer. Now it was my turn to cab it to the cancer center to get the blood work and my daily shot. Then home for naps and rests the balance of the afternoon. Late dinner of clam chowder, baked potato & beans with cukes and tomatoes. Then daily diary, TV and off to bed.

Date: Sun Mar 26, 2000 5:04 pm

Subject: CSCGPII DIARY FOR SATURDAY MARCH 25TH

The best and worst of days! Woke up at 5am and stayed up. Just tired of sleeping. Felt great! All the achiness in joints and muscles was gone and the rash itch was not very prominent. Did most of the crossword (usually get very little of Saturday's done - long words) and did the jumble. Had a 3 egg cheese omelet and toast for breakfast, read my e-mail and posts and thought the day was going to be OK as I headed off to the hospital for my shot. By the time I got home my day was done. All energy and desire to do anything was gone. I spent the rest of the day in my lounger, watching TV, napping, and doing little else. Played ball a few times with the dogs and forced myself to write Friday's diary page but never did put it online. Had cheerio's, midafternoon, and dinner of soup and macaroni and cheese but they tasted crummy. The funny thing is that my mouth feels better today, also. The filmy feeling and soreness are gone. But food does not taste good at all. So a strange day all around. Felt better but day seemed like a big downer!

Date: Mon Mar 27, 2000 8:46 pm

Subject: CSCGPII DIARY FOR SUNDAY MARCH 26TH

A good day! Finally! Up at 6am and my usual morning routine. Just added an hour because of the bigger Sunday paper. Off to the Hospital for the last shot? (if white cell count is OK Monday) and then home to get some work accomplished. I actually do some work for the business and get the diary stuff done and posted. Watch basketball and golf, on and off all afternoon, while still working. I even get through the entire Academy Awards show without conking out. No naps all day! The aches and pains are pretty much all gone. The rash is starting to dry out and doesn't itch too much. No pills all day. The only negative is that my taste buds are still shot. Food tastes bad. I get a little of everything down but not a lot. Oh well, I got myself 10 lbs. overweight going into this, so I have some cushion (no pun intended)(yeah sure). Now start wondering if round 2 will be much worse?

Date: Tue Mar 28, 2000 9:53 pm

Subject: CSCGPII DIARY FOR MONDAY MARCH 27TH

A mostly good day! Up at 5am again, can't seem to sleep late. I puttered away the early part of the day with extra time to kill since blood work not till 10:30am. After blood screen came some good news! White cell count was high at 35.9 (don't ask me what number means) and I don't need anymore G-CSF shots this round. Had to get a prescription to get Friday's test done on the road since I will be in Cleveland, Ohio. Spent the day working on business to get ready for the show and running to the dealership, checking on the truck status. We finally got it back late in the day. Only blip in an uneventful day was that I crashed about 4:30pm. Felt tired and stomach was a little queasy. A nap and dinner seemed to do the trick and I felt OK the rest of the evening. Splurged for lunch (tired of what was in the house) by going to my favorite hot dog joint. Cheddar burger and cheese fries! I usually have jumbo char dog, but with mustard and onions, and did not want to mess up stomach. Still tasted a little off but got most of it down. Dinner of clam chowder, salmon, with asparagus was a little better. A short nap and surfed around online the rest of the evening.

Date: Tue Mar 28, 2000 10:45 pm

Subject: CSCGPII DIARY SUPPLEMENT PROFILE

The following is a quick background of my fight with this cancer. Prior to ACC: Had appendectomy in high school. Mid 30's I had heart attack (2 on scale to 10) caused by overwork. Nothing heart related since. Fall '90 Right side of face lost nerve function. I noticed because I could not blink right eye. DX'ed, Bells Palsy by GP & neurosurgeon. Jan '92 After no improvement of symptoms an MRI & facial nerve test performed. DX'ed ACC of the parotid gland. Feb '93 Total parotidectomy w/ radical neck dissection & lymph node biopsy (clean). Jun '93 Full course post-op radial therapy. to 200cGY/fraction, 30 fractions, total Jul '93 6000cGY over 43 days. Apr '95 MRI shows 2 isolated recurrences at extra cranial origin of jugular foramen. May to solicited treatment options since my Jun'95 quack (more below) 1st surgeon couldn't do (saved me from telling him) operation. Chose a doctor to do procedure. Aug '95 Surgical resection of jugular foremen lesion & muscle skin w/ facial nerve grafts & eyelid repair. Feb '99 Ear canal closure & loss of hearing. May '99 DX'ed bone spur & cleaning of canal restored hearing. May '99 2nd DX of bone spur & leave alone because it would grow back if removed but hearing loss returned (this DX was by 1st surgeon & his associate)(quack it is). Aug '99 Tumor return and MRI confirmed 3CM tumor from carotid into ear canal. Aug '99 Pre-op CT scan reveals mets in lungs & liver. Operation to remove tumor & right ear cancelled. Mets are small cystic anomalies. Follow up 4 months. Sep '99 Tumor options & MRI to position and see if radiation feasible. Oct '99 Stereo-tactic high dose radiation to try neck tumor shrinkage. Dec '99 One tumor in liver now grown to 3CM. Rest unchanged. Recommends chemo (taxol). I take under advisement. Feb '00 Hearing has returned and MRI confirms shrinkage in the neck tumor. 4 month check-ups since shrinkage can continue for up to a year. Feb '00 CT shows liver tumor now 4CM. Find 2 cases of chemo working on ACC and decide to go whole hog. Surgery and Radiation of large tumor are options after chemo. Mar '00 CT shows liver tumor now 6.9CM. Take 1st round of Docetaxel(taxotere) 3/17/00. Date: Wed Mar 29, 2000 2:33 am

Subject: CSCGPII DIARY TUESDAY MARCH 28TH

An hour more sleep today. Lasted to 6am. Crossword done in 25 minutes and no trip to Cancer Center for shot or blood work so the day is off to a great start. Rash almost gone but since there is no more itch, who cares. Spend the day getting things ready for the trip to Cleveland. That included loading about 1200 lbs of stuff into a 5x10 trailer (another 1200 tomorrow with Lisa's luggage). My concession to chemo was that I ordered union labor to unload and load it at the show. Cheaper if ordered in advance but if I knew I would feel this good then, I would not have done it. Food taste was also up today. I would say 90%, back, so it was not a chore to eat. So good, in fact, I wanted to use pepper at dinner, but hold off till tomorrow. I will be working till next Monday afternoon so there will be a diary delay.

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!

Date: Fri May 5, 2000 9:22 pm

Subject: CSCGPII DIARY FOR WEDNESDAY MAY 3RD

Second Cycle begins. The diary is back up and running for the 2nd round of chemo. Lisa and I worked 2 shows for 5 of the past 6 days. Spent Friday, Saturday and Sunday working in a mall close to the house. We were surprised we did so well considering April is usually a real crummy month in our business. Then Monday it was off to Shipshewana, Indiana to start our six month, Tuesday and Wednesday, summer tourist market. It was essentially a training run to teach our new employee, taking my schlepie place, to load and unload trailer and set up the display. When I get a chair big enough to hold him he will do some batteries and shortening watch bands. At least the weather was great. Two sunny, mid 70's days. After the 1 week extra layout, all the side effects are pretty much gone. Only problem is the finger tips. Still dry, crack easily and are sore if I have to use pressure to do any kind of job. The warmer weather seems to help them feel less tender and more usable, however. Started the 3 day steroid regimen today for the #3 Big Drip tomorrow. Last Monday the tension leading up to the next cycle started kicking in. Did go thru some wacky, short tempered episodes these past few days. That without the steroid boost that will probably come. Generally eating, sleeping, regular chores and working were pretty much back to normal. Still shaving only every 5 days. Still have sufficient hair. I was not a chemo sissy for nothing and that slow slide from this new cycle is not going to rank up with a pleasant sunny round of golf with some buddies!!!

Date: Sat May 6, 2000 2:02 am

Subject: CSCGPII DIARY FOR THURSDAY MAY 5TH

Here we go again, #3 Big Drip! The steroids kicked in. Got to bed around midnight but was up at 3am. Watched lousy TV for an hour and a half and slept a couple of hours after that. What wakes me up is something like acid reflux and then when awake the little jitters get to me. Goof the morning away getting some food and liquid in me, for the steroid dose and the 28ML of Docetaxel that's coming. Be at the Cancer Center by 11:30am. I arrive about 11:25 and check in and get my first of many bloodwork slips. While sitting in the phlebotomists cubby hole the day turns bizarre. The blood room is right across the hall from the check-in area and I hear a lady checking in say the my last name. Since my last name is not that common I jokingly told eer blood drawer to mark my blood good since I didn't want mine mistaken for hers. She said not to worry! Ha! So off to the waiting room to await my call to see My doctor for the quick check before the 1 hour chemo drip. After waiting for 45 minutes and not seeing any of my usual care givers, it's back to reception to find out what’s the delay. Then 30 more minutes waiting while I watch the receptionist, nurses and others huddle in little groups and go off into offices and reappear to go off someplace else. By now, with the steroid boost, my blood pressure blasting off and my face heating up, someone better come up with an explanation quick. Finally an hour and forty minutes late, the head nurse for this day (one I hadn't seen in my previous 8 weeks of almost daily visits to the center) comes out to haul me back to the exam room. She tries to put me on the scale but I tell her that all that can wait till I know what is going on! She launches into the lame excuse mode. Their was another person with my last name and I go whoa. That person was female and her name was "Eliza" so you thought a female named "Eliza" and a male named "Stephen" was the same person? Well, yes that is kinda what happened. In other words I'm here to get $10,283.95 of toxic chemical dripped into my body and you can't keep track of me? Is "Eliza" getting her chemicals or mine because I really doubt we’re are getting the same chemo. And what about the Smith and Jones if you get 2,3 or maybe 4 in here at one time? "I can see you're upset and don't want to listen so maybe you should go and reschedule to take this later." "I have already laid out a week and I want to get rid of this cancer and all I want from you is bottom line on how we fix this up and make it happen." And so she finally comes up with the magic words. "We screwed up big time and their is no excuse for the way or why this happened and what can we do to get this treatment started?" Probably going to run out of room so go to part II. Date: Sat May 6, 2000 2:30 am

Subject: CSCGPII DIARY FOR THURSDAY MAY 5 PART II

The previous conversation in Part I was abbreviated a little as she lame excused and I cut her off a few more times but you get the gist. I told her if she had said that an hour ago in the waiting room, instead of making me wait even longer by trying to pin blame and lame excuse me after that, this whole thing would have been almost over and I would have been minutes away form going home. And she could have saved herself a lot of wrangling and rancor from me. So we were finally ready to get started. But first I had to throw out the first nurse they sent in to do the procedure since she was the one 4 weeks ago who didn't know how to vent air out of the Drip bottle. I was on a roll and I didn't care whose nose got bent and I was right because Maureen was better and nicer! Went and weighed myself and gained a couple of pounds (now at normal weight for me), the rash has cleaned up and Dr. says I'm fit to go. The Docetaxel is brought in the special bag and with the special tubing and away we go. Hooked up and #3 Big Drip begins. 1 hour later, my blood pressure is down 40 points to rock bottom and the Docetaxel is now in me. Set up next weeks appointments (hope Eliza stays home) and get my ER prescriptions for blood booster shots over the weekend and I'm finally off to home. Arrive home at 3pm. 2 extra hours in all. The rest of the day finally went great. Went and saw the Granddaughter, Kaitlyn, in her 5th grade musical, do a wonderful job and had a nice birthday dinner for the youngest daughter after that. Ate and drank a little too much and a touch of gas towards the end but a much better end to the day than the start. Beddy bye around midnight.

Date: Sat May 6, 2000 8:13 pm

Subject: CSCGPII DIARY FOR MAY 5TH

A quiet day for a change. Was probably so tired from Cancer Center run around and over sated from late dinner, that I made it thru the night with only 1 quick liquid release. Got an early start to Friday since I take my steroids at 8am and 8pm and have to eat something first. Then I'm off to the grocery to stock up since my lovely cook, Lisa, will be gone from Monday am til Thursday am. And I don't shop on the weekends with the masses. Spent the rest of the day catching up on a week’s e-mail, venting steam (still) while writing diary about Thursday's fiasco, running out for Big Game tickets and for 10 tickets I got 3 numbers right. (wow) Was able to get most of dinner down with no problem and kept reading and watching TV until strolling off to bed about 11:30pm. Nothing popped up on the side front, probably because of the extra week I took in the cycle, and no naps were needed. A nice sane day for a change.

Date: Sun May 7, 2000 6:41 pm

Subject: CSCGPII DIARY FOR SATURDAY MAY 6TH

The last of the steroids got me. Awoke at 2am and channel surfed until falling asleep again, around 4:40am. Back up at 7:20am for good. After the usual crossword, jumble, shower routine its time to try eating. I stocked up on "Ensure" this time, to see if the extra protein would help. Had one with an English muffin, honey and peanut butter. I hate eating this early in the day unless I am working. Then off to the ER for the first of the blood booster shots. I can't shake "Eliza". Her meds are there, in the refrigerator, but mine are not. So I have 20 minute wait until pharmacy gets on the ball. Its going to be fun on Monday morning when I attempt to get these snags ironed out. I have all this extra time on my hands and just need the strength to stay up with it. Got home and since it is now in the 80's around here, wandered around the yard, killing overgrown grass and weeds and checking on my tree plantings on the freeway overpass hillside by my house. (I am stuck with a 1/2 acre of county land that they can't get their tractor's on, so I am turning it into a forest so I don't have to keep mowing it.) It sure feels much better and easier to take this chemo in the warm weather than that cold, windy, rainy stretch during the last cycle. Lisa was out shopping most of the day and I finally got my 7 day backlog of e-mail sorted and answered. The afternoon flew by and I was able to keep rolling along. Dinner was my downfall. After salad, steak, mashed potatoes and corn I hit the lounger and got thru "Emeril Live" ( I had to watch the lobster cooking - my favorite food) and then slept there until 11:30pm. Then got up and went straight to bed. So, except for the crashing after dinner, nothing seemed too out of sorts, yet.

Date: Mon May 8, 2000 5:09 pm

Subject: CSCGPII DIARY FOR SUNDAY MAY 7TH

Slept straight thru until 6am. Finger tips are really feeling the effects of the chemo. They seem to get drier and feel wrinkled (although they don't look it) and putting pressure on the pads causes discomfort. However, using them, like typing right now, makes it stop being so sore. Maybe the use of them pushes the medicine out of the tips and spreads it elsewhere, while inactivity lets it pool there. But hey, I'm no expert. Mouth film is back also. Coffee now tasting a little funky this am. I try another can of Ensure and it still tastes OK, so I guess it's liquid diet time to keep up the protein. The shot at the ER goes smoothly this morning and yes they had the meds there waiting. Back home, I spend the rest of the morning, repotting flowers to set around the house. As I've noted, the warm weather does wonders for making one feel better about being able to do something useful. I also run a couple of store errands, to get things to send with Lisa, when she goes off working next week. A lazy, hazy afternoon spent doing nothing much. Hang out in lounger, watching some basketball and hockey. Lisa and I go visit one daughter, for an apartment decoration update, and stay for Chinese dinner. They forget to bring the rice with the meal, upsetting the other 2, but my taste is shot so it doesn't bother me. Good food, bad food, I just keep swallowing until I can't anymore. Spend the balance of the evening and night wrapped up in a quilt, pretty much sleeping the rest of the day away.

Epilogue

As I’m sure you noticed, I did not complete my diary through the entire second round of the ‘Big Drip’. There were a couple of reasons for that. One is that as you go deeper into a round of chemo, the effects start to build up and you start to slow down. Second was that I continued to work and that required a lot of driving/travel and heavy lifting. With that extra burden and the chemo fatigue building up I just did not have the energy or time to do it all.

I will summarize the rest of that trial and give a rundown in general terms. I got through the first part of the trial and halfway through the second part, when the checking CT scan showed the large tumor growing again. So that was it, I was out of the trial.

Now, a rundown of the side effects. I never did lose my fingernails. However, my toe nails were another matter. I never lost the entire nail but they became pretty much dead and chipped off constantly. During this chemo I did learn how toxic these potions are. Every time they gave me a ‘Big Drip’ it would leave a dead line across my nails. The fatigue buildup was noticeable and got tougher as we moved alone. I had to curtail some activities but was able t , at least, keep working. There were also a few days when I just got laid low and didn’t do much, but not that many and next day it was gone. The rash, steroid redness, hair fallout, no beard growth all continued, but were minor irritants.

The one major complication was numbness in my fingers and feet. Again it slowly built up and hit its peak in the middle of round two. My fingertips became very numb and a determent because of my work as a watch/jewelry repairer. It was a chore and took extra concentration and at least twice the time to finish something. To this day, the bottoms of my feet still have a residue of numbness from the chemo. It subsided from its worst but I would estimate I lost half the feeling in the soles of my feet. Enough to know that some feeling is gone.

So that is it. I must caution that everyone reacts differently to medications. Also I was in very good shape and I have an iron stomach.. I had other chemotherapy’s after this one and effects were about the same except for Gleevec which did a number on me. But that’s another story for another time.

Here are the chemo's I took in the order I took them.

Feb'00 Phase I trial of Taxotere(Docetaxel). Initialy it stopped the growth of the tumor but while on phase II of trial it starts up again and we stop in Jun'00

Aug'00 Angiogram encapsulation chemo delivered right into the tumor. DoxorubicinHCL10mg.,Mitomycin 10mg., Cisplatin 10mg., Odansethosone HCL 24mg. Tumor stopped growing but no shrinkage.

Oct'00 Angiogram encapsulation using Doxorubin HCL 50mg., Cisplatin 10mg., Mitomycin 10mg., Odansetron HCL 24mg., Dexamethosone 12mg., Diphanhydramine 50mg. Again tumor stops growing but their is no shrinkage.

JAN'00 Angiogram encapsulation chemo with Pentofylline 400mg. In MAR'01 the tumor is growing.

JUN'01 12 doses of Camptosar is given and shows nothing in stopping the growth.

AUG'02 Started 400mg. of Gleevac on a daily basis. OCT'02 after some rough side effects an MRI shows the tumor still growing so we stop the Gleevac.

Those were the chemo's I took in total.