Archive: June 2004

Slept a full six and a half hours, without even a bathroom break. While that was wonderful, I could sure feel my back. Last weekend was too rainy to be outside, so I did some research on back pain, based on last December's x-ray results.

Speaking of a rainy weekend, my garden looks nice and green, mainly thanks to the quack grass.

Home Care again suggested that Cecile change my dressings daily with them doing a weekly check-up. While I am not opposed to Cecile changing the external dressing, I don't feel comfortable with her doing the internal packing. That wound is still over 5cm (2") deep, and packing it too tight is very painful, and packing it too loose, and it loses its intended effect. I prefer Home Care keeps coming daily until I can drive myself to a Medi-Centre to get the dressing changed.

Lots of visitors today, Phil, Walt, Duncan, Hank & Deanna. Thanks for dropping by!

Appointment with the surgeon, Dr. Stewart. Making good progress with the stoma and abdomen. The rear wound is still very deep and will take months to heal completely. He did not agree with Home Care changing the dressing just once a day, or trying to get Cecile to change the dressing.

I felt really good after the doctors appointment. Everything was on target according to the doctor. No surprises!!! I see him again on the 21st.

It was no fun driving to the appointment though, and driving back home was outright painful.

Beautiful weather today, so I pulled some weeds. Hardly visible, but at least I had some exercise. I also did a bit of planting, but not enough energy to do much of that.

Another beautiful day. Not even noon and already too hot for me in the sun. Amazing how the heat can sap your energy. But sitting in the shade on my rubber donut and a cup of coffee is very refreshing. It's finally starting to look and feel like summer.

Took some of my extra plants (the ones I've grown from seed indoors) to Vincent after lunch and supervised him doing the planting. While there, we got a very cute photo of Jayden.

After supper I planted some pansies and then sat on my donut and enjoyed being outside.

At 8pm I went inside to watch Bruce Almighty, one of Jim Carey's best movies, in my opinion...

It was pretty windy outside, so I only did a little bit in the garden, mainly pulled some quack grass, not that anyone would notice...

Dull looking morning. Trying to track down a bastard who is linking to my photos without my permission.

Last night my first red orchid cactus bloom opened up and it's bigger than the width of my hand. The cuttings were planted in 2001, so predictions that it takes three years to bloom are true. I don't know if this is Ray's or the ones I got at Kuhlmann's. Oh well, I enjoy it anyway, and I noticed a second bud too...

Robert Schuller had a good message today but one illustration about hidden treasure touched me.

One more week, and my sister will be here. Woohoo...

Did some planting and seeding in the front, but I may have overdone it a bit, because I ended up with a 37.9°C temperature. Oh well, early to bed for me...

Got an email today from Jim Reynolds, a well-known painter of almost 80 years. He's interested in buying some of my photos. I looked up some of his paintings and he's really good.

Had my buddy Paul over for a visit. Sounds like Klondike Days' feature show, Africa, could be quite a challenge, but also very exciting.

Until I can get someone's attention at 3roos.com, I'm playing with their minds... ;-)

Some beautiful birds have been visiting my garden the last few days. A pair of American Goldfinches, and a dozen or so cedar waxwings.

Managed to sit on a lawn chair for a few minutes without the rubber donut, foam, or pillows...

I was asked by Priscilla Savary, Executive Director of the Colorectal Cancer Network, to post their Proposed Screening Guidelines. The proposal, if adopted by the medical community, can eliminate colorectal cancer in our lifetime. Had I had a colonoscopy at age 50, I might never had cancer, just a removed polyp...

Colorectal cancer (which includes cancer of the colon, rectum, anus, and appendix) is the second-leading cause of cancer-related deaths in the U.S. Only lung cancer claims more lives. In 2004 nearly 131,000 Americans will be diagnosed with colorectal cancer and 56,000 will die.

Appointment with Dr. Pedersen. As I already half expected, more chemotherapy is scheduled, starting June 28. There will be four cycles of four weeks each, for a total of 16 weeks of treatment. Each cycle consists of one week of daily treatments at the CCI, followed by three weeks off to let the drugs do their work. The treatments at the Cross will be intravenous cocktails of 5FU with a Leucovorin booster (enhancer). These sessions are expected to be about 30 minutes. The last cycle ends October 17, 2004.

Dr. Pedersen explained that only 7 lymph nodes were removed during surgery, and that the absence of cancer cells in those nodes is a maximum 50% indication that cancer has not spread. That leaves a 50% or more risk factor that the cancer has spread. Hence the need to more chemo, or I may be in the same boat again in a year.

Pelvic radiation can not ever be considered again for me, so prevention becomes real important.

According to a Mayo Clinic study, Fluorouracil (5FU) and low-dose leucovorin given as postoperative adjuvant therapy for colon cancer is effective in preventing tumor relapse and improving survival in patients with high-risk colon cancer.

Revamped the cancer resources page while I was trying to find out what I could expect today. I have noticed on the Colorectal Cancer Network, that if there is the slightest doubt, I'm looking at further chemo and/or radiation.

I guess I'm somewhat disappointed. Even though I kind of expected more chemo, I still had to swallow a few times when Dr. Pedersen explained the reason why it was strongly recommended. I did not have to agree to further treatment, but now that I've come this far, why blow it all, especially since radiation is no longer an option for me should cancer ever be found again in the abdominal area.

On a different note, I had a male nurse change the dressing and packing today. Ed, think of it...a guy touching your hiney...

Note that cycle numbers start at 1 again for the new treatment plan.

Found an interesting comment about journaling on Cancer Consultants' website: "A person's cancer journey can be a time of deep reflection, a time for peacemaking and a time to express fears, hopes, and dreams. Often by merely writing about feelings, a person can attain a sense of perspective and inner peace. The journal becomes a resource for empowerment and inspiration as well as therapeutic. Journaling can be a powerful tool toward healing."

Interesting...

More rain today. I think we're making up for the early part of May's lack of rain. Good thing I ordered some No-Stoop Grass Shears from Lee Valley.

Watched a few good movies, John Q (Denzel Washington: indictment of the state of the U.S. health care system) and Stolen Summer (Two boys, one Jewish and one Catholic, team up to find a guaranteed way to get into heaven; then they discover that one of them is dying of leukemia).

Cleaned up a bit outside so it won't look like a total disaster zone when my sister comes tomorrow.

Leni and Hans arrive from Holland at 2pm. Picking them up from the airport will be my longest car trip since the operation. I hope I can manage it, but I'm taking the rubber donut, the foam piece and a pillow to be sure, especially since Home Care ran out of my regular dressing and used a thicker pad... I'll have to rely on Someone else to keep me comfortable: "Be still and know that I am God." - Psalm 46:10.

The above quote was appropriate, as I backed into a light post getting out of our driveway. Thank the codeine for that...

I guess measuring a wound is not a precise science. June 2nd it was 5.25cm deep and now it's 5.5cm. Length of the wound is now 4.5cm, less than 2 inches.

All in all had a busy day. First we picked up my sister and her husband, Leni & Hans, from the airport. Had supper with them and Duncan and Monica. Vincent, Ang and Jayden dropped in before that. Opal stopped in as everybody was leaving. I think I'll sleep well tonight.

Well, perhaps the brain was too busy... 4am up, 6am back to bed, until Home Care called at 8:30 for a 9am appt.

Got an S-Video cable to display my laptop screen on the TV, but so far it's not working...

First ostomy accident at 5:30am. Must have slept on my stomach and the pressure made it leak. Oh well, sh!t happens...

Took my sister and "b-i-l" to Elk Island Park. I just did the driving, but was still very tired when we got home. At least the visitors got some nice pictures.

Got the S-Video hookup working, but I still don't know how. Oh well...

Had almost 9 hours of sleep last night. Good thing the visitors are off to Banff for a week, so I can get my rest. They'll be back Thursday night and leave the next Monday, when I start my first chemo cycle.

Today is a special day of sorts. In 1967 I graduated from high school, and the 17th is also the birthdate of a girl, Gerda, I had a crush on in high school.

Appointment with ostomy nurses at RAH, 1pm.

Went very good. Lorna gave me some different models of ostomy bags to try before I have to order a new supply.

They're "new image" models from Hollister. Got a few one-time (disposable) bags as well as some reusable, along with a convex flange to help prevent leaking. These bags are cloth covered for extra comfort.

Another 9 hours of sleep. I like!!!

The No-Stoop Grass Shears arrived today, so I did a bit of grass cutting. I'll be cutting some more tomorrow.

All I could do was about 20 minutes in the garden, and I was exhausted. Next week, after I see the surgeon, I'm going to Sears for a lounge chair. Without it, I don't think I can survive the birthday open house on the 26th.

It's only 8pm, but I'm off to bed. I'm pooped...

All the kids and grandkids were over for father's day this afternoon. Too bad Monica had to work. They missed out on some very nice chicken. I marinated them last night with the intent to BBQ them, but when push came to shove, I was not up for that. So they went in the oven instead.

Summer started at 6:57pm. What a bizarre time...

Put some screensavers and slideshows together. Check them out.

Created new Patient Symptom Records for the upcoming chemo treatments.

Appointment with the surgeon, Dr. Stewart. He was very pleased with the healing progress. The rear wound is only 3cm deep (a bit over an inch). The nurse must have measured wrong on the 14th...

After the doctor's appointment, Cecile and I went shopping for a lounge chair. I figure that with the nicer weather, why not lounge outside in the shade? We found nothing at Sears or The Bay, but we came home with leather jackets for both of us. Go figure. Ordered a lounge chair online at sears.ca. Interesting how certain events help us change our behaviour. A number of years ago, during a postal strike, I started online banking. Now, when I'm not very mobile, I do more shopping online. Very interestingly, as I type this, Sears calls to tell me the chair will be delivered on Friday between 8:30am and 5pm. Nice personal touch to an online transaction.

Heard this Irish proverb on TV: "May all your troubles be like granny's teeth, few and far between..." I'll have to remind myself of that next week, when chemo starts.

Yesterday my Lilium columbianum opened it's flower. I noticed it too late to get a good picture, but here's one.

Had a rash on my bum this morning, where the dressing is taped on. The only break on my routine was the doctors visit yesterday, so it's gotta be his fault. Just kidding, of course.

I was just watching an interview of Julie Gregory on Discovery Health channel that shocked me. Julie is a victim of MBP, Munchausen by Proxy, who has written a book "Sickened: The Memoir of a Munchausen by Proxy Childhood."

One reviewer says: A young girl is perched on the cold chrome of yet another doctor's examining table, missing yet another day of school. Just twelve, she's tall, skinny, and weak. It's four o'clock, and she hasn't been allowed to eat anything all day. Her mother, on the other hand, seems curiously excited. She's about to suggest open-heart surgery on her child to "get to the bottom of this." She checks her teeth for lipstick and, as the doctor enters, shoots the girl a warning glance. This child will not ruin her plans.
As a child, Julie Gregory was continually X-rayed, medicated, and operated on - in the vain pursuit of an illness that was created in her mother's mind. Her mother - a former carnival cowgirl - invented or caused symptoms, starved her, and shuffled her from doctor to doctor, reveling in hospital visits and the attention of medical professionals. Her goal: open heart surgery for Julie to "get to the bottom of this." Many victims of Munchausen by proxy die, but Julie Gregory not only survived, she escaped the powerful orbit of her mother's madness and rebuilt her identity as a vibrant, healthy young woman. Punctuated with Julie's genuine medical records, Sickened evokes the parallel universe she inhabited in prose of scathing beauty and dark humor. Isolated in their double-wide trailer, her bizarre pastel-clad, church-going, gun-waving, child-abusing family is worthy of the fiction of Stephen King. But this is also a story of hope, of courageous understanding and deep compassion - and the preservation of a woman's soul.

Yikes, more blood when I pulled the packing out this morning. At least it stopped fairly quickly. The rash is a bit better but not gone yet.

Julie & Deb (mom) visited and they brought some ginger beef lunch. Thanks, ladies, very tasty. Thanks also to the HR department for the birthday card.

Holland beat Latvia 3-0 today in the European soccer championship, UEFA Euro 2004. We'll see how England does tomorrow, Paul...

Pity for Paul, England lost against Portugal in the Euro 2004 (UEFA) games, but given the 29°C temperature and 50% humidity, and playing against a team on their home turf, I think they did an excellent job losing 6-5 during penalty shots. If Holland beats Sweden in the quarter finals on Saturday, they will play Portugal.

For those who wonder who Paul is, Paul is a fellow manager at Northlands [Park] and a great friend. Like today, when we get together, we can just enjoy a game, without having to discuss cancer or other issues. We do anyway, but we just don't have to. I love the friendship Paul offers and I hope I am worthy of his friendship.

BTW, Paul looks after producing Klondike Days which is one of our major events. If you're in Edmonton the second half of July, you owe it to yourself to visit our major tourist attraction.

Sears' shipping company again confirmed the lounge chair for tomorrow. I have not seen such customer service in a long time, and those who know me, know that I'm not easily impressed.

Was up at 4am to clean out the sh!t bag. Then I woke up again at 5am and the bag felt like it was full of air and I was just letting air escape. My mistake to assume... It was full of that other stuff. So here I am, cleaning up in the middle of the night. Another lesson learned.

As I was up early anyway, I was watching a James Robison show with Kathy Troccoli & Georgina Godfrey. Georgina had survived breast cancer but has now passed away. Very powerful testimony. You can watch the show on-line on Life Outreach International's website under Life Today TV.

Hans & Leni are back from their trip into the Rockies. They had a real enjoyable time, and we had a very nice visit in the afternoon, supper, more visiting...

After everybody had left, I created a photo cd of Hans & Leni's photos, and I made a web page too...

Beautiful day today. We got at least up to 25°C (still, at 8pm) and temperatures are gradually getting higher the next few days. Thank you to all who came to help celebrate my 54th birthday at the open house. Even though it was only a few hours, I had a blast having an outdoor party for the first time. It was also great to meet a new face, Marilyn from Devon, whom I know from the ColdZoneGardens email group. Thanks, Marilyn, much appreciated.

It's 9pm and still warm, no wind, hardly any mosquitoes, so I'm still outside with the laptop. Hans noticed a mouse in the garden yesterday, and I've seen the fat bugger run all over the backyard most of today. He/she is fast though, and I cannot detect a particular trail so I don't know where to set the traps yet. Maybe I should not be chasing cats out of my yard. Should not have mentioned the mosquitoes, there are hordes now, just 10 minutes later.

Had a great day with Leni and Hans today. They showed up around 1pm and at about 3pm we went for a drive to Londonderry Chrysler. Hans wanted to take photos of the new Chrysler 300. Then we went to St. Albert and to Hole's. No species lilies left (darn!). We drove around a few residential areas and some acreages. They complained that all streets looked the same, so I had to show them some different places. We came back and drove around Northlands' area and then back home via Ada Boulevard and Rundle Park.

Had bison burgers and lobster for supper, a treat for Europeans. All the kids and grandkids were over too, so I had a great time. This is really a wonderful place to start the chemo treatments from. Family and friends to help me feel connected.

8:30am - blood test (hemoglobin was a bit low)
9:30am - exam
11:45am - chemo treatment cycle 1 of 4. I guess I'll get poked every day I go, no shunt for the week... And of course, first day, they can't find the vein and have to use the other hand; a rather painful experience.

Leni and Hans left this afternoon. I had hoped to be well enough to see them to the airport, but I was just plain pooped when we came home from the first chemo treatment. Other than no energy, I feel good.

Nice to meet Barb Wiseman at the CCI. Retirement looks good on you, Barb. :)

Slept for almost two hours in the afternoon. Before supper I had a surge of energy (for about half an hour...) so I planted the martagon lily seeds I collected last year, and some Canadense rubrum seeds from Libby. After supper I had a very long nap.

1:45pm - chemo treatment cycle 1 of 4

Lilium philadelphicum opened today. Planted last year, but it did not do much then. I'm glad it survived.

2:30pm - chemo treatment cycle 1 of 4

Feeling a bit of tingling in my hands, and my tongue feels a bit weird. Other than that and fatigue, I feel good.

Goodbye to June. It was disappointing to see all my martagon lilies fail, but there's always next year.