Archive: January 2004

"Borrowed" the son of a friend to go to the Muttart Conservatory. Admission is free this week, and many people were taking advantage.
More people are sending emails of encouragement and support. Please know that I am saving your emails in a special folder for when I have moments of doubt, despair or self-pity. Your encouragement will keep me going in the coming months.
My back/hip ache is lessening, and the snow is tapering off.

Still no word from the Cross Cancer Institute about treatments or even a diagnosis of the CAT scan. I'm seeing my family doctor on Monday, so perhaps he can tell me what is happening.
Found a good quote, "Don't tell your God how big the storm is. Tell the storm how big your God is." My motto for today!
A month since the cancer was first suspected by my family doctor...

New TV was delivered today. I like! We took the old one over to Duncan's.

Received a letter from the Cross Cancer Institute for the first visit with a doctor to determine treatment. This appointment is scheduled for January 8th at 2:00 PM. The purpose of this meeting is to create the treatment plan, and hopefully the treatment schedule also.
Went to see my family doctor today too, and he spent some quality time with me, explaining what to expect. My blood pressure is still too high to his liking, but he's not going to put me on medication if the CCI is about to start treatments. If there are side effects, he does not want to cloud the issue.
I'm glad we're moving forward...

Another appointment booked for the 15th (changed to 22nd) with the surgeon, Dr. Stewart. [letter] Palliative care!? What's that all about?
Feeling somewhat anxious about what the news will be tomorrow, but I know where my strength comes from.

First appointment at CCI with Dr. John Pederson. What was thought to be a 2cm (< 1") cancer, turns out to be 10cm (4") on the CAT scan. Dr. Pederson said that it might even be larger but that was hard to tell.
Got a few appointments next week, on the 14th an education session to learn about chemo therapy and how to manage side effects. On the 15th we'll do the actual planning session and hopefully have some treatment timelines then. After the planning session, I'll go into the radiation simulator to mark the spots where treatment will happen.
In a nutshell, we're looking at 6 weeks of simultaneous chemo and radiation, then 8 weeks recovery, followed by surgery. During the surgery, the doctors will check around for other signs of cancer in case it has spread. The CAT scan did not show any signs of spreading, and the liver looked ok, but they won't know for sure until they cut. They will probably do some biopsies...
The chemo will be a drug called 5-FU (Fluorouracil) combined with Leucovorin and will be administered 24/7 via a PICC line at the same time as the radiation takes place (Monday through Friday) for 6 weeks. The reason a PICC line is used, is that if just injected into the vein, the vein would deteriorate quickly.
As for the radiation, I will be sterile and almost guaranteed impotent...

The emotional bomb went off this morning for Cecile. I am surprised it took this long, but at least that roadblock is out of the way.

How do I feel? Tired, but satisfied that I know more than this morning. I am thankful that there is no indication that the cancer has spread, although the size of the growth and it's extent (Dukes stage B) concern me. I thank God that my liver seems ok, and that there is no evidence of other growths. Seems my prayer of Dec 24th has been answered.

I obviously won't enjoy impotence, but I'd rather be breathing and impotent, than not breathing...

The 30 trips to the CCI concern me a bit. Both Vincent and Cecile will have to take time away from a job where they won't get paid if they don't work. Northlands' management has offered to help accommodate and so have my staff, for which I am very grateful, but that will have an impact on their productive time too. I will see what I can find out from the CCI, if there are services available through their volunteer services.

Just letting it all sink in... Great support from Opal and Ed at work. It's wonderful to be able to "dump" on someone other than one's spouse or kids. Even suppliers are jumping in to support me. My view of people and organizations has dramatically changed in the last month.

Thinking... 2AM... A lot of this info is overwhelming. I am finally beginning to get a handle on how invasive this treatment will be and how much support I will need from my family and friends. Yes, I have my faith, but God did not create us in a vacuum...
Thanks, Deanna, for talking to me so long this evening, about Leah's progress. That meant so much to me.
Talked to my sister also, today. She and Hans are planning to come visit in the spring or summer, depending on when treatment happens. Something great to look forward to! :-)

I have just installed a new hard disk yesterday, and will be re-installing the OS and apps on my PC today. I will likely be offline most of today!
19:30 (7:30pm) and I'm back on-line, at least with email and web publishing... I figured it needed to be done, so I best do it before I don't feel like it anymore.
Thanks for your call, Darlene. Great to chat and I hope everything turns out as planned for Harold.
Vincent alerted me to a new program, "compassionate care benefits" that might allow Cecile to take 6 weeks off work. We'll have to check that out! Question is, which 6 weeks to go for...

Spent a few hours this afternoon in Payroll and HR department at work. Just chatting and making jokes. Very therapeutic...
Found a page with some useful information about what causes colon cancer and how it is treated.

Appointment with my family doctor, Dr. Holmes. He had received the CT (CAT) scan report, which we discussed, and then revisited the sigmoidoscopy report and it became apparent that while there had been talk about 2cm, it was not related to the cancer's size, but to its location.
Dr. Holmes still found my blood pressure too high, and put me on Diovan (80 mg) for the next 3 weeks.
Got a headache this evening. Wonder if that's the Diovan or stress... It's not listed as a side effect so I'll have to keep an eye on it. Perhaps I just need to go and sleep...

Was rather tired today. Fell asleep in the waiting room, while reading my book. The nurse had to wake me up. Duh...
Was reading the CCI material after supper, and I guess I'm going to have to toss my new diet and change back to high protein, high carbohydrate meals to help rebuild what the treatment destroys.

Chemo training today. Very informative, more info to absorb... Particularly important is keeping track of side effects on the patient symptom record.
Interesting fellow in the chemo class. He shares my optimistic view on life. His definition of an optimist and a pessimist: "An optimist says there's a light at the end of the tunnel; a pessimist goes and turns it off." I side with the optimists!
Yvonne, the presenter at the class, is a special person who spent extra time with us after the class discussing a variety of issues ranging from driving myself to radiation appointments to loss of hair in unusual places.

Planning session and simulator scheduled for today. The planning session was more a one-on-one version of yesterday's chemo training, except that this also covered the radiation treatments (RT). My first RT session will be on Friday, January 30th with the last one for March 12th. That makes it middle of May before I get operated on.
During the simulator session, I got 4 tattoos to mark the place where the radiation equipment will be aligned. Further markings will be placed on the abdomen before the first RT.
There will actually be 4 beams, one from the front, one from the back, and one from each side. This way they can deliver a lower power, but where they intersect, it will be full strength.
No word yet on when the PICC line will be installed, probably around the 30th, but who knows...
All you people with tattoos, I bet you never got 4 on the same day. I asked Heather to make them nice ones I could show off, but she just smiled... So they're just dots...
The more I find out about medical technology, the more fascinated I am by it. Thinking of how the radiation is delivered through 4 beams makes sense, but coming up with the idea and making it work, and then proving it works, is very impressive.
Quote for today: "You may have cancer, but the cancer does not have you!"
So, praise God, I now have a timeline, what a relief! :-)
Unless I'm called to get the PICC line installed before the 30th, I intend to keep working until the 29th. Or perhaps I'll just take the 29th off to mentally get ready. I'll sleep on that.

For the first time in a long time, I slept right through the night. Perhaps getting the treatment plan yesterday had something to do with that. I must have slept in a strange position though, because when I moved to get up, I felt my neck was sore and then pain, almost like a knife, in the back of my head. Thirteen hours later, I'm fine.
Good day at the office too... Sent out a message to all users so they know Ed is the acting manager while I'm off. Yet another flood of well wishes and personal stories. I am really appreciative of the Northlands staff for their support. When we have orientation sessions for new staff at Northlands, we mention the camaraderie and Northlands family but that is not fiction or a feel-good message. Northlands really is my second family.
Received a CD with photos from my sister in Holland. Many nice photos. Makes me look forward to their visit even more. Thanks Johan!
I have now decided to officially celebrate my birthdays on June 26th. So I will be 54 on June 26, 2004 (not that I am saying I'm 53 now...).
Had a lovely visit this evening from Chris M., a long time friend. She brought her almost 2-year old son, Brian, full of mischief, but a joy to have around.

On a totally different subject, but perhaps not that different... Got an email yesterday from Holland, from Theo Zandbergen. As it turns out, he was in the same institution for TB treatment as I was in 1958/59 and although he is a few years older, we remember the same nurses and medical procedures (stomach pumping, bronchoscopy, etc), the aquarium at the main entrance, and so on. Coincidence? Wait, I'm not finished yet. Theo was just now diagnosed with prostate cancer... But I'm not done yet... He lives in Hillegom, close to Keukenhof where I visited last time I was in Holland, and to top it off he works for a bulb exporter. Now that speaks to my gardeners heart. This whole thing sounds like a Hollywood movie, but who knows what God is doing in the background. I think He has something special in mind for Theo or myself, or maybe both of us.

As I was looking through old photos, I found a poem called To My Grown-Up Son. I clipped this out 15 or 20 years ago, yet was impressed by it's timeliness. Life is short, and we don't get a second chance--we need to do it right the first time!

Found a really good poem, I Am A Survivor. I hope you like it too. While you're at it, check out all poems and stories on this page...
Received an email today, and the writer talked about the importance of the destination and the journey.
The destination of this segment of the journey (and I see the journey as a life-long one) is the end of the treatments (chemo, radiation, and the operation).
The ultimate destination though, is to be in Heaven with my Father, courtesy of my saviour Jesus Christ. I just hope they have a pipe organ in that Royal garden.
The journey I see as my opportunity to tell others about me and where I am going, my ultimate destiny. As I said in the intro page, I will be sharing my personal beliefs. Stay tuned...
Just had some sad news. Linda (one of Cecile's coworkers) lost her dad this weekend. He was an older gentleman, but apparently he and his 9-year old grandson were close. My condolences to Linda and her son and I wish them strength in the coming days and weeks. A big hug to both of you!

I found it hard to concentrate later in the afternoon. My mind kept wandering, even in the middle of sentences. Real weird...

A bit more focused today. Even managed to do some support calls. :)
At home, more upheaval. Cecile's nephew got himself in trouble while on vacation in South America. This is causing a great deal of extra stress for both of us (and the rest of the family) that we can well do without...

Humongous headache starting late this morning, and feeling very tired...
10PM and I'm catching my second wind. I'm starting to get some weird sleeping patterns. Oh well, I'll listen to my body and let it tell me what I need.
I figured I needed a new logo for www.danen.org, so I made one this evening. Not totally happy with it, but it will do for now. Just something to keep my mind occupied.

Got a call from the CCI that the PICC line will be inserted on the 28th.
Met with Dr. Stewart and he wants to see me in the week of April 19th to check the results of the treatments, and book the surgery (he thinks first or second week of May). After the surgery, there will be 10 days in the hospital, then six weeks recovery.
He did caution me that I should take all treatment side effects very seriously, especially prolonged constipation which might have to be treated with an interim colostomy. Yikes...
Dr. Stewart was optimistic about the results of the CT scan. I take that as a good sign!
The timeline of events takes me to the end of June, if all goes well. A lot will depend on whether the surgery goes as planned and if nothing else is found.
Significant quote for today, "The great thing in this world is not so much where we are, but in what direction we are moving." (Oliver Wendell Holmes)

Last day I shaved. Growing a beard now so I don't accidentally nick myself and possibly have to go to the emergency when my platelet count drops.

Just re-reading looktothisday.com and thinking how fortunate I am, living in Alberta, and with Northlands' health care plan. Rodney, mentioned in the above site, has passed away, but there is a wealth of information that is worth reading if you know someone with cancer. While Rodney went through chemo (same 5FU as I'm getting) and radiation, I think there are marked differences. For one, his radiation was only from two sides. I also have the impression my chemo pump will be recharged more than once a week.

Fairly uneventful weekend, just fighting a bit of flu or cold and a stiff back. We're in the middle of a cold snap (-35? Celsius tonight, and expecting -36? tomorrow night), so no wonder my back is acting up...

Came across a note this morning that had no special meaning at the time I received it, in November (I think) 2003, from a person I do not know. Sharon was at a retreat with Cecile and she wrote:
Gerry, I know that you don't know me, but your wife was sharing with me about your dream about the orchid. I feel that the Lord would say to you, that "I know you have been crushed, but I am rising you up out of your pain. I have offered someone a great blessing, an opportunity to carry my flame. This person will refuse to carry my flame and you will take the torch and run with it. Then the enemy will come to convince you that you stole the blessing, that it does not belong to you. Do not believe this lie. I am passing the torch to you because you will say yes to me. Receive my blessing and do not believe the lies. I am your protector and I am telling you this because I don't want you to be crushed again. I am the God who goes before you. I am holding your hand. I am bringing you to a place of healing, then I will raise you up! I love you, my son. You belong to me."
I hardly remember the dream I had, but Cecile says it was about me being in Hawaii, stealing an orchid and ending up in jail. Of course, the note has a new and special meaning to me now...

PICC line insertion at the CCI. That was a rather painless affair, were it not for a mix-up in the appointments... Oh well, eventually everything got sorted out.
After the line was put in they checked BP (still high despite the drugs), temperature, and whether my fingers were getting oxygen. I guess the rationale is that if my finger tip gets enough, then my brain and heart are getting enough too...
Darn, I can't shovel snow, do dishes, or anything like that with my new PICC line. I am so disappointed. All I can do is watch TV as long as I operate the remote with my right hand... :-)

Appointment with Dr. Holmes. As Tylenol and Ibuprofen are not good to use during treatment, he has prescribed Codeine. I like "happy pills." Blood pressure pills seem to be working, so he's given me a 3 month prescription.
Slept really well last night. The PICC line did not bother me a bit, although taking a shower with a saran-wrapped arm is a novel experience. Have to keep that dressing dry.

First RT (Radiation Therapy) session today. I thought it would be four beams at the same time from four directions, but the machine actually rotates around the body, first they did the front, then the back, and then each side. Thirty seconds for each "shot" for a total of two minutes per day. Over the six weeks, I'm looking at getting cooked for an hour in total. My RT team consists of Dennis, Sue, and Anna.
After RT, I went to daycare where they hooked me up with the chemo pump. I carry the pump, chemo bag, and tubes in a fanny pack. Contrary to previous information, I cannot take showers, because the pump is an electronic device that will stop functioning when it gets moist. It looks like the chemo bag will be replaced every Friday, as opposed to the daily RT's.
Both procedures were painless, but that's no surprise. There's a reason why there is so much emphasis on the side effects, not on the treatment itself.

I am now looking for cute volunteer girls to give me sponge baths. ;-) OK, maybe not...
I find that communication between the various departments at CCI is not always 100%, so I need to tell the staff sometimes, that no I'm not here for this, but for that. It pays to pay attention but not let it upset me. There's this quote, "don't worry about the small stuff--it's ALL small stuff," that really applies. As long as they don't cut off the wrong leg...
Around supper time my guts are starting to feel a bit queasy, and I'm running a bit of a temperature. Better keep an eye on that. Mind you, the crazy cold weather we've experienced the last week, don't help much to be healthy. Driving home from the treatment this morning, it was a complete white-out in a few areas of the city.

My PICC line was bothering me last night, but much better today. I'm now sitting at 17 mL infused despite the rather sharp bend in the line. Better get that looked at on Monday.
Definitely have a cold, raw throat and coughing.
This is NOT a good time to have a cold, but better now, before my immune system can't handle it anymore... And, as Jason so aptly puts it, "one day at a time."
Had a few naps during the day to help get rid of my cold.
Talked to my sister about coming over in June. I told her that I'm celebrating my birthday on June 26th instead of December 26th from now on and she thinks it's a great idea.