David's Health - or Lack Thereof

Top of Page Prelim. Diagnosis Final Diagnosis Latest Entry Memorial


Background:
I'm 47, don't drink, don't smoke, exercise regularly, maybe don't have the best diet, but do come from a very long-lived family.
Disclaimer: This is an informal personal narrative, and is not intended to be instructional on any matter. If there are issues mentioned here that you'd like to know more about -- start studying.
Sunday, 2/20/2000 - I woke up at 1am with a sharp, steady pain in my right side just below my rib cage. Could not get back to sleep so at 3am I woke up Corinne and asked her to drive me to the Emergency Room. They gave me some pain-killers and thought it might be kidney or gallstones and said to come back in 24 hours if I was still in pain.
I had trouble getting to sleep after I got home but did get in a couple of naps that day. Went out for dinner and picked up a Gameboy for Corinne and the Toy Story 2 game. That's her birthday present (coming up on Thursday.) Watched M2 (http://mtv2.mtv.com) when I got home.


Monday, 2/21/2000 - President's Day - A holiday and I'm back at the Emergency Room. It was a normal day for the hospital so they got a doctor to do an thorough ultrasound on me. Didn't appear to be kidney stones or gallstones, but there was a mass growing on my right kidney.

This could be bad news. They squeezed me into the Radiology Department's schedule and I now have a CAT scan for Thursday. I will also be having a biopsy. Watched more M2 during the day, and mostly just rested. Decided to stay in denial for as long as possible. Just a happy clam here, yup.
Needed a pain-killer to get to sleep.


Tuesday, 2/22/2000 - Went to work. Canceled a trip to Texas I was supposed to make on Wednesday.
I'm receiving a lot of support from people I know online on the River and the Well and some email lists I'm on.
In the evening I read Mitch Albom's "Tuesdays with Morrie" -- a very moving book about a college professor who is dying of ALS. He shares some of the lessons he's learned in life. I tried to think of some bit of wisdom to leave for others. Here's the best I've got so far:

When you're using a knife to cut up foodstuff, like chocolate or
cheese or bread, don't put the food in your mouth with the hand
holding the knife.  

Seriously, the denial is wearing off, thanks to reading the book.


Wednesday, 2/23/2000 - Back at work for a few hours. Then we went over to a lawyer's office to start the process of getting a will made out. Bought some computer books and went home and rested.

I'm starting to have problems with taking deep breaths. It pushes down on that mass, I think, and makes everything in my gut hurt.


Thursday, 2/24/2000 - Corinne's birthday - Slept in late. Went in for the CAT scan. It went smoothly. I don't get the results for a week. We went out for lunch, then Corinne wanted to get the tax returns out of the way, so we took care of that. Then we bought some nice desserts and went home.


Friday, 2/25/2000 - Went to work. Not a real productive day, but had some stuff that needed to be done. Didn't need a pain-killer that evening, maybe I am getting used to the pain.


Saturday, 2/26/2000 - Back to the office, then had a prior commitment in Petaluma. Saw a rainbow as I drove to the west. Wasn't on the computer much the rest of the day. Had a very good night's sleep. Normally I wake up around 4 or 4:30am, but slept until 7am.


Sunday, 2/27/2000 - Read the paper, went to the office and web browsed. Started on the rough draft for this web page. Got a large pain in my left shoulder blade -- maybe the tension's getting to me. Home and then Corinne and I went out of a large lunch/dinner. Afterwards I used a heating pad to ease the pain/tension in my shoulder.


Monday, 2/28/2000 - At the office, more shoulder pain. Got a reminder call that the biopsy appointment is for Tuesday. Went home and used the heating pad. Have been sending out email pointing folks to this web page.


Top of Page Prelim. Diagnosis Final Diagnosis Latest Entry

Tuesday, 2/29/2000 - So this morning I'm going in for a biopsy. I get up and read the paper and there's an article about how difficult it is to treat cancers that spread from the kidney(s). Not that that's necessarily what I have, but it was interesting timing.

Turns out that that is what I have: a malignant tumor on/in my right kidney. The kidney will have to be removed. That's scheduled for March 23. Fortunately I have a good kidney on the other side (the CAT scan said it was still there and looked healthy.) Taking care of myself -- came home and had some Cherry Garcia frozen yogurt.
The tumor is 13 x 9.5 cm - I hope that weighs about 20 pounds, because then I'd be at my ideal weight when they remove it. Probably won't be that lucky, though.

As far as why the operation is so far off in the future: it gives me time to donate blood so my own blood can be used if there's a problem. Also, I wanted to allow a little mental adjustment time before the operation.
In answer to another email question, no, it doesn't look like I'll be doing chemotherapy or radiation treatment. Hopefully they're catching this while it's still all one lump.
Also, Corinne got a diagnosis on Tuesday -- she has a shortage of iron in her blood. Something that starts with an 'a'. Maybe she's been stressed lately.


Wednesday, 3/1/2000 - Had a good night's sleep, woke up before the alarm went off and came to work. Have received a lot of email the past few days, and I do appreciate that, although I won't be able to respond to all of it right away. Had some messages of support from my manager and senior manager on my voice-mail when I got in.
Did some web browsing about surgery and found a few very thorough web pages. Got details about before the surgery, during the surgery, and then a long list of
everything that could possibly go wrong afterwards. More information than I needed to know.


Thursday, 3/2/2000 - Another good night's sleep. Some clarification on the diagnosis: the CAT scan report said that it would be extremely rare for a tumor of this type to be benign. They'll test it after they take it out. I guess there is a possibility that they might want me to undergo radiation or chemotherapy depending on the results. I'll be getting a copy of the CAT scan and will type in the exact wording later.
I've received a few email's from people who think I must be suffering terribly (mentally) over this situation. I'm not. I'm taking life in small doses and dealing with what I need to deal with today. Not much to do today (continue to breathe, don't get run over by a train, update the web page, etc. - the basics.) Tomorrow, Friday, I give blood. The rest of the week is my regular routine responsibilities.


Friday, 3/3/2000 - Today I give blood. I've been a regular blood donor the past few years, so I'm used to the process. I used to be short on iron (the copper sulfate test), but now I usually remember to start eating cream of wheat for breakfast each morning and don't have a problem. Other things on my mind this week, but I did remember the cream of wheat this morning. I did get a call earlier in the week from my regular blood bank since it was time for my regular donation, but it'll be at least two months before I get back to that.
By the way, if you're eligible and you've never given blood, please give the idea some consideration. Personally I do not watch them put the needle in my arm. I do consider myself lucky that I've been healthy enough to give blood so far. Here is one source of information about donating.
Other news: I've been trying to catch up on the backlog of email I've received recently. Sometimes I come up blank on what to say in return, so I'll put it here: Thank you for the email!
I failed the copper sulfate test. That's where they see how much hemoglobin your blood has (the stuff that carries oxygen around). They take a drop and put it in a blue/green liquid (copper sulfate) and see if it sinks (pass) or floats (fail). But since the specific gravity of CuSO4 isn't exactly that of oxygen/iron rich blood they followed up with a centrifuge test and I hit the cutoff number exactly. So I got to give one unit of blood. But since that depletes my system it's harder to get enough iron to pass next week's test. I now have to pay daily attention to my iron/hemoglobin levels. So that's the immediate task in front of me. My normal blood donations are eight weeks apart, by the way. If I don't donate next week then the surgery gets moved further into the future since there's a shortage of blood in the Bay Area's blood banks.


Saturday, 3/4/2000 - Still sleeping well. It's a beautiful morning in the Bay Area. Might rain later on. Not much new to report. I am becoming aware of my loss of appetite. I can't eat as much as I used to. Guess I'll start snacking more. Did find a web page about a good eating plan for someone with cancer. Will start planning my meals better.
Corinne had surgery about 16 months ago, so we had a long talk about what I should expect. I've never had major surgery before. I've visited a lot of people in the hospital over the years, and maybe this will give me a different perspective on the experience.


Sunday, 3/5/2000 - Realized I'm not feeling as much pain from the tumor area. Maybe it gave up and is going away on its own? -- Oops, turns out that the more I sit, the more it hurts.
Didn't eat much iron yesterday, so will make that a priority today. It helps to have a simple thing to focus on. 11am and I've taken 150% of the recommended daily dose. Guess I don't want to overdo it.
Called my parents this morning and they'll be visiting after I'm home from the hospital.
A nice quiet day. Just realized that all this started just two weeks ago. I'm starting to get around to those people that I have to write letters to in order to inform them because they're not on the net. Trying to remember the last time I wrote a letter -- it's been a while.


Monday, 3/6/2000 - Well, the first person on my list to send a "real" letter to got online and sent me email last night, so that's one taken care of. I'm feeling low on energy today and probably won't stay at work real long. I have a few things that need to be taken care of at the office first, though. I'm not used to this "low energy" thing -- makes it harder to compose sentences. But I made a list of things to do and just have one big task left.
A lot more email came in today, including messages from some cancer survivors. (I almost said "other cancer survivors" but I'm not a survivor until I survive this thing. Can just do one thing at a time.) After I get out of surgery there are support groups in this area that I can get in touch with. Probably beats sitting in front of a TV. Meanwhile my co-workers are surprised that I'm still upbeat and smiling. I think I inherited some "good attitude" genes.


Tuesday, 3/7/2000 - Super Tuesday, so I guess I'll vote today. I'll be home early so we can go to the lawyer's office and sign all the papers on the will. One more thing that'll be taken care of.
Anyway, my "low energy" may have been because I didn't have any coffee for two days. Had a cup this morning and it perked me right up.


Wednesday, 3/8/2000 - Yes, the coffee really helps. I actually haven't been drinking it that long. When I was a kid I asked my parents when I could start drinking coffee and they said they'd let me know when I was old enough. Finally when I got to be 34 years old I threw caution to the wind and started drinking it anyway. My excuse was that I was teaching high school and needed the boost to keep up with the students. ;-)
Seriously, I am still eating high-iron foods and should be all set to give blood on Friday. A lot of people have volunteered to give blood in case I need it, and I'll check on that possibility on Friday.


Thursday, 3/9/2000 - Liver and Onions Day. Yes, I like liver and onions and I get to have some today to help my iron count for tomorrow's blood donation. I'm not supposed to eat liver real often because of my cholesterol, but at the moment that's not my most pressing problem. While I'm not focusing on what's ahead, I do know that my surgery is scheduled for two weeks from today.
Evening: someone suggested I read "Traveling Mercies" by Annie Lamott if I liked "Tuesdays with Morrie." I read most of Lamott's book Thursday night, and it did have some funny bits in it. I'd read some excerpts when they were on Salon's web page earlier. The language is a bit strong in places so I can't recommend it for everyone reading this page.


Friday, 3/10/2000 - Another blood donation day. My appointment's at 12:30PM Pacific Time. I'm sure that liver and onions pushed me over the edge. That was a great meal.
Corinne had a doctor's appointment Thursday about her anemia and thought they'd just give her a prescription for iron pills, but no -- they want to find out what's wrong with her. So they're doing some medical lab work with her and she has to not eat certain things for a while. She couldn't even have liver and onions yesterday. Afternoon: the liver and onions didn't work. I was nowhere close to having enough hemoglobin. Normally it takes 8 weeks to restore ones hemoglobin after giving blood, and I was trying to do it in one week. The RN looked at me when I came in and thought I was too pale to have enough iron. She was right.
So next is finding two Type O donors in the Bay Area who can donate by the 16th (to allow time for testing). They want just the red blood cells, so that calls for a closer match than it would for a whole blood donation.
Anyway, I'm laying down and resting. Except for the typing, of course.


Saturday, 3/11/2000 - Got a good night's sleep. Got up and typed in a list of the donation centers. I've had nine people with type O volunteer to give blood in the past day. So that's shaping up pretty well. Thank you, thank you, thank you.
So I'm going to stay in and rest today. Did get in a good long nap this morning. And I want to add that yesterday was the low point in this whole process. Feeling like my regular self today, though.


Sunday, 3/12/2000 - Not a whole lot to report today. Good night's sleep. Feel OK. Came to the office to check a few things but will be back home and resting in a few hours. The next thing on my "to do" list is to stop taking aspirin on Monday. I have to be off any blood thinners ten days before the surgery.


Monday, 3/13/2000 - Evidently the way to guarantee waking up with a killer headache is to know that I can't take aspirin today. Whew! I'll try two mugs of coffee and see if that helps. The other thing to do today is to call the blood bank and work out details for how people donate for my operation. Evidently there's some confusion somewhere. I signed several papers on Friday saying that I'd accept donations, so I'll see if there's anything else I need to do. By the way, it's a glorious day in the San Francisco Bay area. Sun's shining and the air's clear. Average price of gasoline did get up to $1.87 and will probably go over $2/gallon -- but I don't be driving much after the 23rd. How's that for a bright side?
Another detail on the blood donations: I need to fax a list of people I'm willing to accept blood from to the blood bank before they go in to give blood. So if you're planning on going in before Thursday, please email me with the location you plan to donate at. Thanks, again.


Tuesday, 3/14/2000 - Yesterday we finally made it to the restaurant that Corinne wanted to go to for her birthday. Then we went home and I rested after that. Probably not going to be much more ambitious today. I have typed in the details of what someone needs to do to cover for me at work while I'm gone.
Not much new this morning. Catching up on email at work. Been cleaning out my office a little. Good opportunity to make the place a little neater.


Wednesday, 3/15/2000 - Was in more pain yesterday and had trouble getting to sleep. I can spend less and less time sitting up. I did go over the papers from the HMO about the surgery and they made more sense the more I studied them. The next thing coming up is on Tuesday -- meet with the anesthesiologist, the pre-op nurse, and the surgeon. So it's a matter of taking it easy until then.
At least three donations of blood were made for me to use and I only needed two, so I'm all set for that part of the operation. Thank you, donors! One less thing to worry about -- not that I'm worried in any way.


Thursday, 3/16/2000 - One week away from surgery. The pre-op appointments are on Tuesday, so that's the next thing coming up. Today I'm training people on what I do at work. One of these days I'll catch up on email ....


Friday, 3/17/2000 - Got a good night's sleep -- even slept late. I'd been waking up at 3:30 or 4am and had quit setting the alarm clock (4:45am) and today I slept until after 5am. Still made it to work by 6 and felt very rested and in very little pain. My parents are in Memphis, TN today for an ice skating show. I think they're going to watch instead of trying out. Of course, they might surprise me.


Saturday, 3/18/2000 - Getting to the point at work where there's way too much to do for my remaining time/energy. That's frustrating. On the other hand it's just beautiful weather here in the SF Bay Area.
Pain: a couple of years ago I had dental surgery and afterwards I kept feeling worse and worse. There was intense pain in my jaw and it was spreading along the nerve on the right side of my face. It got back in and the dental surgeon figured out the problem and fixed it and I'll spare you the details, but I felt a lot better immediately. But during that time when I was suffering (quietly, of course) my mood got worse and I realized that steady pain could wear me down. I had worried that would happen during this experience, but so far it hasn't, in part (I think) because there are not a lot of nerve endings around the tumor. I get some stabs of pain, but it's rarely constant and intense. So I've been fortunate this time.


Sunday, 3/19/2000 - Been downloading some humor files from my collection at work onto my laptop, so I'll have them to read when I'm at home. Two cancer survivors came over on Saturday and talked about their surgeries, and how they take care of themselves -- things they do and their diets and other habits. Lots of good information. It was good to get first-hand accounts about what the recovery process is like. They also talked about what it's like to be in the hospital. And they reminded me that humor can be one way of helping the healing process.
So in that vein, here are some suggested guidelines for what to do and not do if you visit me in the hospital:


Some of the serious items were from a friend, Becky, a chaplain.
What I recommend is going to the hospital room, sitting down in a chair, talking/listening for ten minutes, and leaving.


Monday, 3/20/2000 - Things are busy at work. Email went out over the weekend to my co-workers about my situation so I have more email I might not get to right away. Evidently some of them didn't know I had a sense of humor. Heh, heh. My recuperation bed should be showing up this evening. Not much else to take care of today. And then the pre-op appointments are tomorrow. I'm not in a whole lot of pain today, but I'm about to take a break and rest for a while.
Spent the evening reading a book about how to prepare for surgery and heal faster afterwards. Some useful tips. One of the suggestions was to not rush to have surgery done, and I did have a three week time period to get mentally prepared.


Tuesday, 3/21/2000 - A lazy morning. I woke up around 4am but took my time getting going. Went out to get a paper and some breakfast. I'm usually not in as much pain in the mornings - maybe because I haven't been sitting so much. Read the paper and did the crossword puzzles. I have a few errands to run today along with the pre-op appointments. Need to make out a 'to do' list for Corinne while I'm in the hospital. Get some batteries for my portable cd-player.
I'll do an afternoon update after the pre-op stuff.
Someone asked about how Corinne is doing. The news there is that she finished the ten pound bar of chocolate I gave her for Christmas. I did help just a little, but didn't bring quite the same level of dedication and perserverence to the task. Other news, she's being tested for the anemia problem, but the results aren't back yet. But at least she passed the ten pound chocolate bar test unscathed.
Afternoon summary of the pre-op appointments: I'm currently pencilled in for an 8am surgery on Thursday, which means arriving at 6:15am. That's the earliest possible slot, but things could come up that bounce me to later in the morning. For example, if a short out-patient operation came up they might do it first to get that person on out of there. But I'll know for sure late on Wednesday. Also, my blood pressure, temperature, pulse, etc. are all fine. So there's little chance I'll get sick and miss surgery. They showed us a tape of pre-op and post-op information that was very helpful. I probably will be in until Tuesday.
And one reminder that it's really happening, I'm tagged. Got a pink strap around my left wrist. It's got the correct name and medical record number -- I checked.


Wednesday, 3/22/2000 - Last day at work and a lot to catch up on before leaving this afternoon. But about this time tomorrow I'll be showing up at the hospital -- and without my coffee, since I'm not supposed to eat or drink anything after midnight tonight. But what I have to do right now is check my voicemail (at work) for yesterday's messages and see what needs my attention.
Heading out of the office. My work is done here -- unless I log in from home.
By the way, when I first met with the surgeon a month ago he showed me where the incision would be -- ran his finger in a three inch arc under my rib cage. When he demonstrated the cut to Corinne yesterday he started on the left side of my torso and and showed that it would be about an eight inch cut. I'm starting to wonder what the actual cut will be.
Yes, the official surgery time is 8am Pacific on Thursday. I have to be there at 6, along with photo id and medical card, just in case someone was going to try and get in and have my operation in place of me.
This is Corinne. I thought I'd try out adding to the web page while David was still here to help me. Seems to be pretty simple process. We're pretty much ready for this. I'm planning the day like a journey: bringing my coloring book, a magazine, cd player, comic book, and Gameboy. Our pastor, Doug Donley, is going to be there keeping me company. I wonder if he has a Gameboy?


Thursday, 3/23/2000 - David, again: heading over to the hospital in 30 minutes. Just wanted to thank everyone for their email, calls, support, etc. Way too many people to list here, even by category. And it's 5am, so no special wisdom or witty sayings come to mind. Maybe later.


3/23/2000 This is Corinne. I've gotten home from the hospital. David's surgery went fine. It took a little over three hours but the surgeon came out to the waiting room with a smile and said everything went well. They got all of the tumor and the cancer appeared to be contained. He even said he thought David was "cured" and wouldn't be needing further therapy. We'll get the pathology report in four or five days and then we'll know more, but for now it looks very good. I saw David when he got out of recovery and I thought he looked good. He's on morphine and his job for the rest of the day is bed rest. No liquids, no food, no standing up. If you want to visit, he is in room 3070A at the Walnut Creek Kaiser. Don't go today, of course, and visiting hours tomorrow start at 1:30. Please don't stay more than a few minutes because he needs to rest more than anything.


3/24/2000 - David had a restless night due to the pain. He looked good when I went into see him and he was strong enough today to get up (that was the hard part) and walk up and down the corridor *twice.* Tomorrow they plan to have him up six times. He hasn't watched TV or listened to the radio but he said he wasn't bored. I guess being in pain can be pretty entertaining. We wanted to thank you all for the flowers and good wishes. And thank you, too, for all the prayers and positive thoughts. I feel as if a huge burden has been lifted from me.


3/25/2000 - This is a message from David: Two days in the hospital is an eternity. I was walking down the corridor this morning and realized it was dark. I asked if it was 4:00 a.m. or p.m. and then whether it was Saturday or Sunday. I am having some spasms of extreme pain. On the other hand, I just started clear liquids.

This is Corinne. David wanted me to bring in a print out of what I'd written for this webpage so he could see "how he was doing." I brought it in and he circled all the typos I'd made. I told him it wasn't my fault; my copy-editor was in the hospital.

Many thanks to all of those who have sent cards, flowers, and the cool Kenny from South Park pinata. (There was only one of those -- you know who you are :->)


3/26/2000 -- Lots of good news this morning; David passed several milestones towards heading home. The pain has subsided enough to take him off the epidural and put him on pain pills, he's on full liquids (instead of clear liquids) and the doctor made noises about having the catheter removed sometime today. If he keeps improving I think he'll be coming home Tuesday. I hope.

From David: Thank you, Holly, for the "clucking bunny." Eggs from a rabbit, what next? Also, the bandaged was changed today. I've got a nice, long scar -- healing -- with a row of metal staples in it.


3/27/2000 -- From David: Yup, looks like this will be my last day at the hospital. I'm unhooked from all the tubes and wires. If you want to come by between 2:00 p.m. & 9:00 p.m., come on over. I've written down the names of all my visitors and it's quite a list. Again, thanks to everyone who stopped by.


3/28/2000 -- [It'll probably be David from here on out] I'm home from the hospital. A little more wiped out than I expected to be. I seem to alternate between days where I think I"m doing great compared to where I was and those where I'm shocked at how far I have to go before being fully recovered. I over-did it this morning helping a roommate that they moved in after midnight. After that it was a lot of waiting before they took out the staples. Got post-release orders that say what I should do, eat, drink, watch for, etc. Still haven't heard if the tumor was malignant.
My top three tasks now are:


Wednesday, 3/29/2000 - Whew! A rough day followed by a very bad night. We'd bought a futon bed for downstairs for my recovery period because I didn't know if going up and down stairs would be a problem. I tried sleeping on it but either it was too soft or too level. After a couple of hours of muscle spasms, I went up the stairs (no problem) and tried that bed. It was elevated and firmer, but I still didn't get much sleep. Now I can't even lay flat on the floor comfortably.
What happened on Tuesday -- most of the time that I spent in the hospital was in having a double room all to myself. They brought in another patient, Max, after midnight Tuesday. Since I was getting around fairly well I talked with him and helped him with some stuff. Around 9am his phone started ringing and I knew he couldn't reach it, so I yanked myself out of my bed and got it for him. It was his wife, Margaret, who was coming over. When she showed up I realized that there wasn't a chair for her to use, so I yanked myself up and tried to pull a chair over for her. Didn't make much progress (heavy chair, slick floor, my side was hurting), so she said she'd take care of it and did pull it over to where she wanted it. I laid down and realized that if a woman turning 80 this weekend could move furniture better than I could, it was time to take it easy. Too bad I didn't realize it earlier, because my side's been throbbing ever since.


Thursday, 3/30/2000 - David and Corinne: We're sorry but David can't come to the computer at this time. He let the pain management get away from him and ended up taking an ambulance ride to the E.R. Wednesday evening after going into more pain spasms and experiencing shortness of breath. He's now back home getting bed rest today. Definitely just taking each day as it comes.
By the way, there's a special about Cancer on HBO this evening. Pretty interesting so far.
David, again: had a very good afternoon. Feeling stronger, and have less pain. Corinne gave me a sponge bath and I took off all the various tapes/bandages that had accumulated. Took off both my "tags" as well.


Friday, 3/31/2000 -- Went to bed early (8PM or so) and woke up early. Realized at one point that I was taking a deep breath and not getting a pang from my ribcage. That helps my comfort level a lot, especially as I work on my lung capacity.
I'm watching the University of Tennessee Lady Vols play Rutgers. Lady Vols leading at the moment. Been trying to take it easy today, but am running a slight fever.
And a reminder that Daylight Savings Time goes into effect a lot of places this weekend.

DIAGNOSIS: the surgeon just called with the lab results on the tumor and kidney that were removed. The tumor was malignant - renal cell carcinoma. The tumor had penetrated the kidney, but all of the tumor was removed surgically. Because the kidney was penetrated, I will be monitored by an oncologist. I'll try to get a printout of the report at the next meeting with the surgeon.


Saturday, 4/1/2000 - A good night's sleep. I woke up breathing better than I had been. I'm still trying to get my lung capacity back up there. I was able to cough this morning, which is a good sign. I'm going to spend most of the day sacked out in front of the TV. I'm also trying to get out of the Little Old Man Walk, where I favor the side with the incision. They were very clear at the HMO that I can't use the Little Old Man Walk -- maybe I can apply for a permit in 30 years.
Did go for a walk and I do lean to one side. Thanks again for the continued support: cards, email, etc. Got someone bringing over some split pea miso soup for dinner. Looking forward to it.


Sunday, 4/2/2000 - Woke up and changed the remaining clocks an hour forward. Regular routine: take pain medication, use the breath enhancer, check my temperature. Going to take it easy today, although there are a few things to take care of before my parents get here tomorrow.
Saw a news report about using electronic games/devices as a form of anesthesia -- that people get distracted by the game and forget what kind of pain they are in. That happens to me, but when I quit playing the game I feel the pain and then can't take enough pain-killer to be comfortable. So right now I'm trying to balance FreeCell with the prescription medication. It's a rough life, for sure.
I get a lot of compliments about my use of humor. I don't what to make of that, because I don't know what parts people find funny, but I'll just keep typing and you can enjoy the parts you like.


Monday, 4/3/2000 - Still sleeping well. Running a normal temperature. Taking smaller doses of pain-killer. Still not happy with how much I suck on the breath machine. Going to do some crossword puzzles and then read for a while.
While I'm waiting for my parents to show up, I thought I'd add some details about the hospital stay. When people talk to me about it they assume I was on a PCA (patient controlled anesthesia), a device that lets the patient click for another shot of pain-killer. I wasn't. I had a spinal tap in my back with a catheter that loaded morphine directly into the region. The anesthesiologist said that that this would keep me more alert -- that the pain-killer was going to where it was needed instead of being spread by my circulatory system throughout the whole body. There was a lot of focus on keeping me alert and involved. Also, immediately after surgery and for the first couple of days I had pressure cuffs on my legs around both calves. They'd alternate pumping up and releasing pressure. That's supposed to help prevent phlebitis.
My parents are here and we've had dinner (Thanks, Dennis!) We don't have much planned for the coming week. Hopefully the good weather will hold on for a while.


Tuesday, 4/4/2000 -- Don't know what I'm going to do while my parents are here. I'm less entertaining in person, that's for sure. We'll probably go for some walks. The weather's still nice out here. I don't know if they'll be able to check their email from my computer because I have a strange setup here.
I am going to cut back on the pain-killers and see how that goes. And my next medical appointments are on the 12th, a week away.


Wednesday, 4/5/2000 -- Went for two 2-mile walks yesterday with my parents. There might be too much pollen in the air for that - kept trying to cough last night and had a restless night's sleep. We watched the HBO special on cancer, which had a lot of good information, but was longer than I could deal with. I'm not quite ready to march on Washington and insist on a cure for cancer.


Thursday, 4/6/2000 - Just did one 2 mile walk yesterday. Didn't want to push it too hard. Today Corinne is flying down to her mother's and my parents will be here to take care of me. I'll try to behave myself.
Oops. I picked up Corinne's suitcase and brought it downstairs, which may have been a mistake. My abdominal muscles are complaining. I don't think it was the walk -- I should be able to keep up with two 70 year-olds (my father and a neighbor, Don). Just going to take it easy the rest of the day.


Friday, 4/7/2000 - Another rough time getting to sleep last night. Off on another walk today. A fairly simple routine right now. Probably watch more of the Masters golf tournament today. Golf does look like a frustrating game.
Well, that was a bit short. What can I say? At this point I still have some discomfort around the incision site. Still resting, checking my breathing. The pain in general is less and I haven't used a pain-killer since Tuesday. I was able to sleep on my side last night after two weeks of sleeping on my back.


Saturday, 4/8/2000 - Had a good night's sleep. Off on another two mile walk after breakfast. Not much else planned today. Might try and catch up on some email. I had thought my recovery time would be more productive, but I end up taking it easy and recovering.


Sunday, 4/9/2000 - Corinne gets back from her mother's today. My parents leave early Monday. I'm doing OK without a lot of major things happening in my recovery. Had a very restful night's sleep last night and about to do another two mile walk.


Monday, 4/10/2000 - My parents on on the way to the Oakland airport. We've had a good visit. They reminded me to not lift anything weighing more than five pounds while recovering. This is getting pretty dull, isn't it? Hopefully there'll be some news from the doctor on Wednesday.


Tuesday, 4/11/2000 - Last night we watched God Said Ha!, a one person play by Julia Sweeney. She and her younger brother had cancer at the same time and that's what the play is about. Her web site has some interesting links about her play and her life and about cancer. I definitely laughed a lot more than I meant to. It's showing on the STARZ channel this month.
Off for another walk this morning. I took it easy yesterday.


Wednesday, 4/12/2000 - I'm off to the doctor's office this morning, so will post an update later in the day.
OK, back from the doctor's office. The bad news is that the biopsy of the tumor showed it to be a very aggressive cancer. The good news is that they really think they got it all. By the way, it turns out they didn't use any of the donated blood (mine or the other donors') on my surgery. My blood loss was less than 200 cc. Thanks to all the donors anyway!
They took some blood to do a quick check on chemicals associated with cancer and to see if my hemoglobin count had gotten back up to what it should be. I can return to work in a week, but can't drive there -- no freeway driving for two weeks.
I meet with the surgeon again in a month, and will meet with an oncologist then. I'd thought I'd be meeting an oncologist today,but nope.
Another CAT scan in six months. That's where they look for new masses appearing.


Thursday, 4/13/2000 -- Last Entry -- or is it?
As several have pointed out (including me) -- this is getting boring. My life will probably be fairly routine for a while. As of today, it's been three weeks since the surgery.
Where am I now? I have a large scar on my abdomen that will fade with time. A certain amount of discomfort, especially if I sit up for a while. I've lost 20 pounds (was 200, now 180).
The rest is cliches: appreciating one day at a time, living in the moment, not taking today for granted, etc.
Several people have asked if there was a cause for the cancer: Not as far as I know. Cancer is caused when cells in the body fail to copy themselves correctly. There are many factors that can cause that type of failure: diet, pollution, radiation, etc. In this case there's not a particular one that stands out as the likely cause.
I've also been asked what would have happened if this hadn't been diagnosed so early. The two main possibilities are that (1) it would have taken more aggressive medical measures to keep me alive, or (2) I would have died. The tumor went from my kidney to my lung. It punctured the kidney and could have done the same with the lung, given time. That's why there will be followup monitoring. And that's why it's a good idea to get regular checkups and to also get medical attention when there's a change in ones body.
Thanks again for all the email, prayers, attention, support, etc. I do appreciate it.
If there's any new developments, I will add them here, so feel free to check back from time to time.


Friday, 4/14/2000 -- Ah, a few things come to mind. One is that for those of you who've been following this story from Tennessee, I should be there around July 22nd. I've lost enough weight that I can fit in my best suit without being compared to a sausage. I should probably try the thing on anyway...
And for those in Idaho, I can't be in both states at the same time. Sorry.
And in late June and early July I should be in Southern California for a celebration of my mother-in-law's 80th birthday.


Saturday, 4/15/2000 -- Another thing I'm checking into is a cancer support group. There's one locally (about a mile away) called the Wellness Community and they have a newcomers meeting on Monday night. They also have an impressive page of links about cancer.


Friday, 4/21/2000 -- I woke up on Thursday and felt very, very sick. Wasn't able to keep any food down, among other things. Corinne took me to the doctor's office and he thought it was a bug and gave me some antibiotics and had some lab tests done. Went back home and rested in bed all day and then got a good night's sleep. Feeling a little better this morning.
The lab tests said my remaining kidney is doing fine.


Saturday, 4/22/2000 -- Yesterday afternoon, Friday, I realized I was feeling a lot better. The best I've felt since the operation. I'm taking some medication that includes a warning to avoid direct sunlight, so I'm not getting outside much, but am doing OK at home.


Monday, 4/24/2000 -- Went to work today. Feeling better overall, but it is tiring, so I have taken some breaks to rest. Not much else new. At least the car got a workout. I'd put 13 miles on it in a month. Now it's got 18 more miles on it. It'll get to 160,000 soon enough, I guess.


Monday, 5/1/2000 -- I got the system statistics yesterday and a lot of people are still reading this page, even without the daily updates. So, here's what's new: I pushed myself too much last week. On Thursday the car broke down on the way to work and it led to a long painful day. I still haven't recovered. I'm in the office taking care of few things, and then headed home.


Tuesday, 5/2/2000 -- Took the day off and laid around and rested. I think the more I sit up the more I hurt, so have been taking it very easy today. Of course it is kind of boring to sit around. I start noticing things like how long it's taking the hair on the back of my hands to grow back. Both hands were shaved for IV's and that was over a month ago. Hopefully you're now as bored as I am. ;-)


Thursday, 5/4/2000 -- Another day off and more time spent resting. Shaved off my beard. I hadn't shaved since my operation, but the itching was getting to me. Just don't need more stress right now. Aside from that there's not a lot new today. Got email reminding me that I can now say I'm a Cancer Survivor. Hopefully, day by day, I can stay in that category for a long time. Also, I think I mentioned earlier that Corinne had been in a lot of pain too -- she's doing better now. However, her mother, Connie, is back in the hospital with another minor stroke -- that's the current guess. She hopes to get out tomorrow.


Saturday, 5/6/2000 -- Went to the office and got some work done yesterday. Meant to head in today, but didn't feel up for it when I awoke. Am laying down and resting right now -- I got my laptop working with a network connection so I can rest and type at the same time. A little more tweaking and I'll be able to rest and work at the same time. It just doesn't get any better than that! Well, sleeping and working at the same time would be better, but I don't see that happening. (My managers read this page, so I did want to reassure them that I'm never asleep on the job. Occasionally I go into a deep meditative state when considering what's for lunch, but it's only sleeping if I'm snoring.)
Anyway, my mother-in-law, Connie, is out of the hospital and is hitting the road with a friend. The friend is 93, so it's good that Connie, who is only 79, will have some adult supervision. I hope they have a good trip.


Tuesday, 5/9/2000 -- My mother-in-law survived her road trip. I'm doing OK -- stayed home today and rested. Actually got some work done across the network, maybe more than I'd have gotten taken care of in the office. I'm still trying to catch up on email -- about 600 more messages to go.


Saturday, 5/13/2000 -- Saw the doctor on Thursday. He thought the incision area was healing pretty much on schedule. Suggested that I exercise a little bit more. He lined me up an Oncology appointment and that's next Thursday. So the recovery process is still going on. I'm getting a lot of rest and sleeping well.

Been meaning to add something I think I've learned from this process -- I've had to learn more about receiving help. While I haven't always been self-sufficient (Happy Mother's Day, Mom!), I've been on my own for a long time. During the past few months I've had people visiting, bringing in food, calling, giving me rides, etc. And a lot of time all I can do is say, "Thank you." So, yes, I'm thankful for all that has been done for me.

Don't know if that makes any sense, but it's been on my mind lately.


Thursday, 5/18/2000 - I had my first meeting with the oncologist today -- that's the doctor specializing in cancer. She started off by saying that technically what I had was Stage IV cancer. If it had spread or is spreading, the odds are against me. She said that normally they'd treat a recurrence with a drug that has a 5% success rate, which means 1 in 20 survive. On the plus side, they do think they got the whole tumor and some of the extra parts they took out (lymph glands, etc.) were not malignant, so there's no sign of spreading so far.

She was concerned that the tumor had run from the kidney to the lung, but a chest x-ray hadn't been done yet, so I went downstairs and got a chest x-ray. Had me do some tests as well, and we have another appointment in a month. I'd mentioned that I had lost my appetite and she said they have a medicine for that. Corinne asked if it had a side effect and she said, "Oh, yes. Weight gain."

Now for the real serious news: as they checked me in today they did a very thorough job on my stats and vital signs, and, according to the nurse, found that I'm shorter than I used to be. The nurse put it down as 0.75 inch less, but the doctor rounded it off to 0.5 inch shorter. So now I'm adjusting to being just 70 inches tall. And if my parents or my brothers go through another growth spurt then I might not be the tallest any longer.


Tuesday, 5/23/2000 -- it's been two months since the surgery. I'm still recouping -- not going at full speed yet. I'd thought I'd be all healed by now, but no such luck.

I did figure out that I wasn't shrinking after all. I just haven't been standing up straight. I favor the side with the incision and tilt that way. Just got to watch my posture.


Wednesday, 5/24/2000 -- Wanted to add that I went for a walk yesterday about a mile from where I live and I saw two young deer in a front yard. It was 9am, so it was a bit late in the day for them to be out, but at least I'll know to watch for them in the future. I'd seen deer in the southern part of Walnut Creek, but this was the closest I'd seen them to my house.

Now on to the lab results: when I get back from today's walk there was a message on the answering service from my oncologist that the lab results were in and I should call immediately. It wasn't one of those perky upbeat messages. I called and left a message and she returned that call. The chest x-rays were OK; no sign of a tumor or anything around my lungs. However, the blood tests showed some enzyme imbalances, and it looks like something's wrong somewhere. So the CAT scan is being moved up from September/October to immediately and they'll be doing a bone scan as well. That's as much as I know at this point.


Friday, 5/26/2000 -- It's been a hectic couple of days. I have a CAT scan on Monday morning (Memorial Day) and a bone scan scheduled for June 12th. I also have a copy of the lab results, but don't know what it all means:

TEST		STATUS		RESULT		NORMAL RANGE
Alkaline Phos	H		203 u/l		47 - 137
Kidney Test	H		1.4 mg/dL	< 1.3
LD (LDH)	H		804 u/l		120 - 230
Liver (SGOT)	H		47 u/l		10 - 40

If anyone knows what the "LD" means, please email me. Thanks.


Saturday, 5/27/2000 -- OK, got some pointers on "LD" -- "lactic dehydrogenase." One web page about how they test for LD includes some possible reasons it might be elevated: myocardial infarction and having had recent surgery are the two that would possibly apply to me, and I'd tend to go with "having had recent surgery."


Monday, 5/29/2000 -- Had my CAT scan early in the morning. Will be glad to get those results back soon. Also ran into someone there who'll be part of the team when I get my bone scan on June 12th.
Went over to see what the Cancer Survivor support group was like, but they didn't meet because it was Memorial Day. I'll try again next week.


Tuesday, 5/30/2000 -- Got the result of the CAT scan and it's bad. There's a tumor on my right side that's larger than the one they took out in March. It's pressing on my liver and my colon, which is probably why I'm having digestion problems. The oncologist will check with the surgeon about whether to try to remove as much of it as possible, but what's a more likely first step is to start radiation treatment this week to (1) get its growth to slow down, and then (2) to get it to shrink. Most likely side effect of the radiation treatment is fatigue, which I have anyway. There is also an accumulation of fluid in my right lung, which will need to be drained.

At least I know what's going on and why I'm getting worse instead of better.

A little more info: I have my first radiation treatment next Monday morning at 8am. If there's an cancellation I'll try to get in earlier. Still no word on when they'll drain my right lung. And a hospice nurse is coming over Wednesday at noon to talk about at-home care.


Wednesday, 5/31/2000 -- Still part of a hectic two days. Got an appointment to get the fluid from my right lung drained on Friday. So just about everything that needs to be scheduled has been lined up.
The Hospice checkin nurse came over and we spent over two hours going over a lot of different things that need to be taken care of. They were able to get an oxygen machine plus some spare oxygen tanks delivered to the house today. We went over the different problems the new tumor is causing and she called in three prescriptions that might help with some of the effects I'm experiencing. And I'm getting organized as far as things I need to take care of.


Thursday, 6/1/2000 -- Did some work this morning and then my computer crashed. Rested for a while. I've been reading Ram Dass' "Still Here" about his experiences with aging and health problems. It's been very helpful. Earlier in the week I read David James Duncan's "The River Why", which I've always liked. It was comforting in its own way.

Helen Keller died on this date 32 years ago. We used to live on Helen Keller Lane, across the street from Ivy Green, when I was a child. Saw this quote from her and liked it:

We could never learn to be brave and patient, if there were only joy in the world. -- Helen Keller


Friday, June 2, 2000 -- Long day getting my lung drained. Technically it wasn't the lung though. There's a membrane around the lung that normally holds a small amount of fluid. In my case a lot of fluid had accumulated in there and it was forcing my lung to take less room. So they drained about 0.5 liters of fluid and would have drained that much more but I wasn't feeling well. But my lung is now stretching and re-inflating. It's good to be able to take a deep breath, but it's also painful. Next up: radiation treatment on Monday.


Saturday, June 3, 2000 -- Some pain from my lungs as they adjust to having more room and being able to breathe deeply. Slept a lot today and took it easy.
Found a web page about this particular type of cancer. It's pretty much in line with what the doctors have been telling me this week. By the way, I'm at Stage IV.


Monday, June 5, 2000 -- Went over for the radiation appointment but they didn't have a copy of my CAT scan yet, so there wasn't much to do. We're going to try again tomorrow. They'll put a tatoo around the area that will be getting the radiation. The main hope is to get the protruding part to shrink back inside my chest cavity. I'd be a lot more comfortable. The actual radiation treatments would start next week, I think. One of their machines is down this week.
My parents got here and are resting -- or at least they're doing something else while I rest.


Tuesday, June 6, 2000 -- Went back to Radiation and they gave me my first tatoos ever: red, white, and blue. They're permanent and they're on my chest. My first radiation treatment is next Tuesday, the 13th, and I have five treatments that week.
Chemotherapy starts immediately, but I need to see if the prescription was fulfilled today. I'm getting a pretty long list of drugs to take every day. Now to keep track of them all ...


Wednesday, June 7, 2000 -- It's getting hard to keep track of what all is going on. I'm changing medications just about every day, having various symptoms appear and go away. I started work on my memorial service today and Corinne took care of some of the details around what happens immediately after I die. My main goal is to make it back to Tennessee for my parents 50th aniversery, and it's looking more and more like that's still a realistic possibility. So I've still got six or more weeks to take care of matters -- barring any sudden reversals.

Looking back, it doesn't look like I've done a good health update. Basically I have at least two malignant tumors. The one around my incision is going to receive five radiation treatments next week. Some shrinkage would make my life easier. There's also one where the old kidney used to be and it's pressing on my liver, colon, lung, etc. They can't radiate it without taking the risk of damaging those organs, so there's a slim chance chemotheraphy will help there. So I'm needing both the bad odds of radiation and the bad odds of chemotheraphy to work for me, which is still within the realm of possibility.


Thursday, June 8, 2000 -- Got a lot of work done for my company today. Switched painkiller medications and at least for today I had a real boost of energy. Then the hospice sent a massauge specialist over and that was great. I fell asleep while she was working on me. Slept about three hours. My parents cleaned out two of our main storage areas, so a lot of junk is gone. That's great. Looks like we've found a nearby place for them to stay when they return in a week.


Friday, June 9, 2000 -- A very long day for dealing with health concerns. A lot of it involves scheduling things for next week. I'll be starting the week with:


And my best friend, Dicedog, is showing up on Tuesday and later in the week my parents and my two brothers will arrive. One of these days I'm going to have to get organized.


Saturday, June 10, 2000 -- Some friends came over and hooked up Corinne's Macintosh to the DSL line, so we can now both be connected to the internet at high speed at the same time. It's working very well. And some others picked up items I don't need or want any more. It's nice to have some big empty holes in the bookcases.


Sunday, June 11, 2000 -- Lots of company today. A group of six came over and cleaned out my main closet. Took about two-thirds of my clothes to St. Vincent de Paul. Also got rid of my sterio, speakers, 5 CD changer, etc. for me. Others stopped by for my ten-speed bike and my cassette tape duplication machine. Glad to get rid of all of that stuff. I still have a turntable and some vinyl records, but nothing to hook the turntable to.
Oh, Earl Crabb brought one of those electronic cameras -- doesn't use film. He took some photos and edited them. These are from our front yard.


Monday, 6/12/2000 -- Woke up with a ringing in my ears and some other indications that the painkillers were still causing me a problem. Went to the HMO for the first part of the bone scan. Had a long break between the shot and the actual bone scan so met with the oncology pharmacist. He gave me a prescription for a heavily controlled substance (and highly experimental) and there was a lot of paperwork that had to be done. Then I had the bone scan. Went home and we had another conference call about my painkillers and I dozed off at some point. Unfortunately I think I was still answering the phone and carrying on conversations, but it might be interesting to see what all others expect me to do tomorrow.


Tuesday, 6/13/2000 -- It was a good day to stay home all day. Logged into work, took care of a few things. The Hospice chaplain came over and we had a good visit. Corinne stayed busy getting refills at the pharmacy and other stuff. The Hospice nurse came over in the afternoon and we talked about the changes in my medications. I think part of the problem is that if I take enough painkillers, it's going to affect my ability to do everything I'd like to do. Tough choice.
James (dicedog), my best friend from high school, got in this evening so we've been sitting around chatting. He'll be going to all the medical appointments I have tomorrow -- radiation treatment, chest X-ray, drainage of the lung area, etc.


Wednesday, 6/14/2000 -- First off was the radiation treatment. They put me on a high energy machine and the first dose took 2 minutes and 45 seconds. Next was the chest X-ray -- which had surprising results. Evidently the lung membrane isn't filling with fluid after all. Instead it appears that the lung is being compressed by the tumor in my back pressing on my liver and lung. Unfortunately this is something that they can't just suck out with a needle.
Got home and had a visit from a local pastor. Then my parents and Johnny, my middle brother, showed up. Arrangements were made and they do have a place to stay.
Next is another radiation treatment early Thursday morning.


Thursday, June 15, 2000 -- Off to another radiation treatment; my father and brother drove me. Didn't do much the rest of the day -- don't have much energy. Rested a lot. James/dicedog took off on Amtrak to Seattle. It was a short, but intense visit. I had some things to give away that I didn't know who to give them to, and he took most of them.
Have been reading about death and dying and one of the books had a section saying that those of us who know roughly when we'll die (within one or two months in my case) have an easier time of dying than others. I think that's true for me, because I do have a rough idea of when I need to wrap everything up by.


Friday, June 16, 2000 -- Had the last of the high energy radiation treatments today. Hopefully next week's treatments won't be as hard on my system. I'd like to have more energy and a better appetite.
Rested most of the day and am waiting for Charles, my youngest brother, to show up. He's flying in from Nashville.
I continue to get a lot of email -- and I haven't been able to keep up with answering it all. I give it my best shot.


Saturday, June 17, 2000 -- Still very low on energy today. Rested just about all day long. Got in some long naps. Did get to visit with the family some. Tomorrow I hope to go clean out my office and we do have company coming over.


Sunday, June 18, 2000 -- My father and brothers made quick work out of "cleaning" my office. There's still a ton of stuff that's built up over seven-plus years that can go straight to the dumpster. I now have all the gear here at home that I need to do my work, so hopefully my energy will come back now that the radiation therapy is finishing up. That's one of those "wait and see" deals.
While we had the family (parents and brothers) together we discussed some of the post-death plans. The basics were that I'd be cremated and there will be a memorial service here in California. It was then agreed that my ashes would go to Tennessee to be interred there, and there will be a memorial service there as well. But no, there's no rush to get to that part.


Monday, June 19, 2000 -- Back for more radiation. Looks like they have me scheduled for another treatment every morning this week. Still trying to find out how much longer this will go on, since I'm concerned about staying so fatigued. But at least at the end of the day I feel OK and am still getting around well.


Wednesday, June 21, 2000 -- Had a radiation treatment yesterday and today and the last one is Thursday. It has shrunk the front tumor (who I'll call "Kenny"), so the remaining concern is about the back tumor ("Ike") and any new tumors that might have formed. I have a CAT scan scheduled for Sunday and should know more about the current state of things early next week. The back tumor is the one pushing through my right lung and is so wrapped up with other organs that they can't use radiation on it. So we'll see if the chemotherapy is doing anything on the back one.


Friday, June 23, 2000 -- Had the last radiation treatment Thursday morning and then a late appointment with the oncologist. The first thing she noted was that I'd lost 10 more pounds in the past month -- a bad trend. I'm taking a couple of medications to increase my appetite but most foods taste 'off' to me and are difficult to eat. About the only ones that I can consistently eat are grits and scrambled eggs along with a root beer float. What luck, eh? Anyway, it is good news that the front tumor has shrunk from the radiation treatment, but we'll have to wait until early next week to see what's happening with the tumor in the back. I have a CAT scan early on Sunday morning.
Yesterday the hospice nurse said that when they work with new patients there is often a lot of denial on the patient's part that they're going to die (you have to have a life expectancy under six months to get into the program.), but that my acceptance has been amazing. I think part of it is that I can feel what's going on in my abdomen and I know it's not good. Spontaneous remission of all the tumors would be nice, but until something like that happens I have stuff to do -- wrapping things up. If I live past my current life expectancy I'll buy a new car, some clothes, and get on with a new life. But at the moment it's been nice to clear up some of the stuff that's accumulated around here.
By the way, got email from my brother Johnny that they had a successful drive back to Tennessee and are home safely.


Saturday, June 24, 2000 -- My reading list has been pretty intense. First I read Ken Wilber's Grace and Grit, about his wife's struggle with cancer. Some good information along with a very moving story. Then I read George Sheehan's Going the Distance about his eight year battle with cancer. The last four chapters were particularly good.
A different kind of book was a real eye-opener for me: Dying at Home, by Andrea Sankar. It goes into the details of what the caregiver goes through in taking care of someone who wants to die at home. Stresses the importance of having support and also how long the grief process goes on afterwards. Our culture encourages people to "get over it" quickly, but it can often take a year or more to adjust to a death.


Sunday, June 25, 2000 -- Lest it look like I'm only reading downbeat stuff, I'll pass along one of the funnier books I've read lately: Humongous Zits by Jerry Scott and Jim Borgman. It's a compilation of the start of the Zits comic strip. It reminds me of Calvin and Hobbes, except it's about a teenager.
I had a CAT scan early this morning and should find out in the next day or two what's happening with my tumors, whether they're shrinking or growing or if there are more of them. I might be able to get the info sooner off the HMO's web page since I have an account and password there, but haven't tried it yet.


Monday, June 26, 2000 -- Got the results of Sunday's CAT scan but it wasn't anything conclusive. Going to get a printout and compare this one with the last one. Also, this evening Corinne, my parents and I went to the Wellness Community newcomer orientation. Very informative and we learned a lot. There was encouragement to get a second opinion about what's going on, and I think we will. Even though the research I've done on the net shows that this is a dire situation, it won't hurt to check with another doctor.


Tuesday, June 27, 2000 -- Did some more research on cancer and treatment today and Corinne made an appointment for us to get a second opinion about my case. I've been reading through some of the material we picked up last night as well.
We're also getting ready for a trip to Southern California for the 80th birthday celebration for Corinne's mother.


Wednesday, June 28, 2000 -- I was forwarded a reference to another web page about the type of cancer I have. The page recommends Interleukin-II, but its success rate is around 5%. But we'll ask about it when we get a second opinion next month.
As far as what's going on with me right now, I'm on a lot of different medications for various things and dealing with different side-effects. The main thing bothering me is that my hands shake, which means I can't write and have trouble typing. That's been an adjustment. But it could be worse, for sure.


Thursday, June 29, 2000 -- The day started with a lot of phone calls back and forth between Corinne, the HMO, and the Hospice. The Hospice nurse came by in the late afternoon and we went over a lot of the details of the weekend trip to Southern California. Another nurse had been worried that there wouldn't be enough oxygen on the flight, so this nurse checked me and my blood was already at 97% oxygenated, which is fine. After I ran up and down the stairs it was 98%. So that's one thing I don't need to worry about on the trip. It turns out you can ask for oxygen on a flight, but it helps if you let them know ahead of time that you'll be asking.


Friday, June 30, 2000 -- Went over to the Wellness Community to be interviewed about joining a regular support group. Had time to read from their library while the rest of the family did interviews. Got home to find that an MRI had been scheduled for this afternoon so I went over for that. They want to check to see if the tumor has relocated to my brain -- that possibly that's what is causing the shaking in my hands. Had also left a message with the doctor about why my vision is failing and got a reply that I was undergoing "rapid aging of the eyes" but no explaination about whether it was due to the cancer or any of the medications.


Saturday, July 1, 2000 -- Didn't get much sleep last night thinking about what to do next with my health situation. It's nice to get away on vacation and take a break from the house. I finally got a copy of the CAT scan late Friday and am still trying to figure out what it means. It's going to take some work.


Sunday, July 2, 2000 -- The 80th birthday celebration for my mother-in-law was today and it went well. I think Corinne's still trying to get my weight back up -- tons of high calorie stuff around here to eat. For the most part I'm enjoying lounging around -- it's been great weather down here.
One interesting bit of reading recently: a doctor made the point that the odds that are quoted for chemotherapy assume the original patients all took their chemo drugs, but actually many don't or don't take the full regime. So my odds would be slightly better if I did take the full cycle. A lot of patients get anxious about the things they've heard about chemo and it affects how they handle the experience. Gave me something to think about.


Monday, July 3, 2000 -- Yup, Corinne is trying to fatten me up. This beach house is loaded with high-calorie foods. She said she'd get Crisco if she thought I'd eat it. I didn't tell her that I think I've seen a wedding cake frosting recipe of Crisco, powdered sugar and food coloring. Lasts forever. Anyway, it seems like I've been eating all day long.
I think this is the first time we've been at this beach house on July 4th, normally we come down for Labor Day. The fireworks are already going off.


Tuesday, July 4, 2000 -- There are police blockades around the beach side of town where we're staying, so we're staying home today. I think I will do a little sunbathing since I've been out of the sun for six months. It's between 65 and 75 degrees, so it's nice out there.
And for those who asked, I don't know how much powdered sugar to mix with the Crisco, but I think I have that cookbook at home. It's a specialty book for cooking for large groups: fifty, hundred, on up.


Wednesday, July 5, 2000 -- The neighborhood was pretty stocked up with fireworks and kept the party going late last night. I slept pretty well anyway. Had some company today, read some, listened to some tapes, and took it easy. Tomorrow we fly back home and hopefully will get the MRI results.
The only downbeat development is that my left leg has buckled on me a few times. Fell down flat twice, but I had three years of speech and drama and know how to fall. This may be a side effect of the chemotherapy that I was taking and may wear off.


Thursday, July 6, 2000 -- We're back in Walnut Creek. The flight was painful because my left leg kept cramping, but the advice nurse at the hospice had some suggestions and Corinne is off to pick up a prescription that might help.
My parents picked us up at the airport and took us out to dinner. They got married fifty years ago today. The restaurant treated us to a huge dessert. Whew! Current plans are that we'll be flying back to Tennessee in two weeks for the celebration. It was six weeks ago that the doctor thought I had between four and eight weeks to live and the celebration was at the outside limit, but so far, so good. Got problems, but I'm still living.
Early morning note: when we got back we found that the MRI I had last Friday shows no sign of any tumors in my head, so that's one less thing to worry about.


Friday, July 7, 2000 -- It was a nice quiet day. Did some cleanup work on my room and got some things organized. Checked and after a week of good eating in Southern California I'm down to 155 pounds. So I've lost at least fifty pounds this year. Wasn't my goal, for sure. On the plus side the shaking in my hands wasn't a problem and I was able to walk around without falling down. Got an eye doctor appointment tomorrow and hope to get some glasses that let me see stuff more than ten feet away. Maybe I could start driving again.


Saturday, July 8, 2000 -- Took my parents out for a nice breakfast and found I had no money on me. I'd gotten out of the habit of carrying cash. Even forgot my ATM card. If I get better then I'm going to have to re-adjust to the real world, I guess. The optomitrist thought my new prescription might let me start driving next week, so there might be any number of adjustments to make. I am feeling better in a lot of ways since the new medicine has helped with the falling over problem and the hands trembling. Hmm, might even go back to work. I think I remember what I used to do there.


Sunday, July 9, 2000 -- Another nice quiet day with lots of naps. Just realized I haven't even finished reading today's paper. Had a fair amount of company, and did get the living room straightened up. Still no luck at getting my weight up. Going to try a full American breakfast Monday morning and see if that helps. Corinne did get me a canister of chocolate frosting -- 2000 to 2500 calories -- but it didn't appeal to me. Oh, well, there's worse problems to have.


Monday, July 10, 2000 -- Had a huge breakfast with my parents -- remembered to bring cash this time. Also checked my new ATM card and it worked, so I guess I'm adjusting to mainstream life again. Took my morning nap and then we went to a mall and I got around pretty well by wheelchair. Got a new pair of glasses and they work great. It's really nice to be able to see sharply at distances greater than ten/twenty feet. Was really exhausted when I got home, though.
I called my manager and talked about doing my regular responsibilities at work this week. I think my situation has been stable enough this week that I can do that. Next week we'll be back in Tennessee, so this was a good week to try doing my regular work.


Tuesday, July 11, 2000 -- Corinne and I made out a list of questions for a second consultation with an oncologist today. We were down there for a couple of hours and went over a lot of material in detail. It does still get back to some bad news -- that there's not a quick fast fix for this problem, but we did get a lot of information and agreed as to what we should be doing from here on out. I will be going back on the chemotherapy I'd be trying earlier. It's a clinical trial so some of the results might be useful for others who have this type of cancer in the future. There's also a certain amount of accepting parts of my condition because the experimental fixes might be do more damage than good.
We also went into detail about how to handle the trip back to Tennessee for my parent's fiftyth aniversery celebration. We'll get the prescriptions filled and have some plans for handling possible problems that might occur. I'll try to add some of the details over the next few reports.


Wednesday, July 12, 2000 -- Getting more organized for the Tennessee trip. We did OK throwing stuff together for the last trip, but want to make sure we've got what we need, especially when it comes to the medicine. I'm about to take a nap, and then go over the complete list again. Just got in a package of anti-cancer medicine from my brother Charles and the nurse and doctor thought it was just fine that I go ahead and give it a try.


Thursday, July 13, 2000 -- In a week we'll be on our way to Tennessee. Things seem to be working out well and I'll be glad to get there. Unfortunately there are way too many people to see, but I will be glad to see many of those who've sent me email the past few months. And the focus really is on my parent's aniversery. Fifty years is a big deal. I'm just happy I can make the trip at all.
I did want to mention that I hope to redo this web page into something a bit more organized and useful for those who read it in the future. I've got various bits of information scattered through here, so I'd like to get that in a form that others can find useful. But I do have many plans and we'll see what actually happens.


Friday, July 14, 2000 -- A nice quiet day with a lot of rest. Got parts of the place cleaned up. Going to try to get some sleep. Going to try for the same results on Sunday. And then it's back to packing and the trip to Tennessee. It will be good to get everything in good shape and get various parts organizeded. I am feeling pretty organized and ready for the trip.



Top of Page Prelim. Diagnosis Final Diagnosis Latest Entry Memorial

Last modified 7/14/2000 10:18 PM

You can email me: dhawk@river.org