Wednesday, May 31, 2006

An Unwanted Journey: Day 0189 - Cost of Chemotherapy

A good friend has been corresponding with me recently about the costs of cancer therapy (to be fair, he was more interested in whether I should ask the oncologists at the cancer centre about some of the newer drug therapies available). I haven't paid much attention to costs of my treatment yet. Suffice to say, OHIP pays for most of the procedures, hospitalization, etc. It doesn't pay for oxaliplatin, but a federal program has agreed to pay 100% of those costs for my treatment.

But since his email I have read a few abstracts about oxaliplatin treatment costs in the United States and Great Britain. One USA Today article (the one my friend forwarded to my attention) compares 8-week treatment costs for some of the standard and newer drug therapies:

5-FU(fluorouracil and leucovorin): $63 USD
Irinotecan: $9,497 USD
Oxaliplatin (with fluorouracil and leucovorin): $11,889 USD
Bevacizumab: (with fluorouracil, leucovorin and irinotecan): $ $21,399 USD
Cetuximab (with irinotecan): $30,790 USD

Sometime soon, I'll collate some of the costs just for my personal interest, costs like 28 days in hospital, the low anterior resection, radiation treatment, CT scans, MRIs, ultrasounds, lung scans, etc. Without even doing the research, it's quite obvious to me that I have become very expensive to the people of Ontario in the past few months. Don't get me wrong; I'm worth it, but it is humbling nonetheless to realize what the treatments are worth.

This week, I've had an additional CAT scan at the hospital, met with the surgeon for a followup consultation, and I will be meeting with an occupational therapist tomorrow. It's turning out to be a good week.

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Sunday, May 28, 2006

An Unwanted Journey: Day 0186 - Lifelines

When I meet acquaintances these days who have been unaware of my battle with cancer over the past six months, I find myself describing that period of time as the most difficult, the hardest challenge of my entire life. True enough. But what sometimes doesn't get said is that it has also been a period of rediscovery of the lifelines which make my life worthwhile.

In the past few days alone, for instance, I have been on the receiving end of gestures of kindness from family and friends that remind me I am loved. That doesn't mean I feel worthy. It just means that my life is only sensible as part of a web of relationships.

My parents, for instance, have been phenomenal, helping me in a variety of ways, the most important of which is simply listening to my concerns, offering advice, and visiting me when the can. Friends have brought plants, CDs, books, and dropped by the house for quick visits just to let me know they care and want to stay up to date on my recovery. My wife and sons continue to make daily life bearable. In fact, my wife has been at my side, preparing meals, checking on my condition, reviewing medical appointments and confirming medication for over 2 months now without complaint. My sons help with many household tasks that would otherwise be my responsibility. They also continue with their own lives, doing exactly what teenage boys should be doing at this time in their lives. I think they implicitly understand that I wouldn't have it otherwise. If they stopped their normal activities just to be at my beck and call 24x7, it would bother me.

I was able to go to the early service at church today, re-establishing another set of lifelines. Just to sing some hymns, shake hands and embrace friends, take the eucharist alongside my fellow parishioners, and talk briefly to as many as possible after the service - it was worth the discomfort and weariness I had for the rest of the morning.

Now, this coming week, I must get ready for my wife returning to work. This means I'll have to start preparing some of my meals and otherwise taking care of myself. Don't get me wrong. I am pleased my wife will be able to see colleagues and do her work again. I am also pleased that I am well enough to start taking care of myself to some extent. It means that, as long as chemotherapy doesn't lay me low, I may be able to anticipate doing useful work again. I don't yet know when that will happen, but at least it is now in the field of possibilities. Work, of course, is yet another lifeline.

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Thursday, May 25, 2006

An Unwanted Journey: Day 0183 - Incredible Shrinking Man

My medical oncologist is now off on paternity leave (congratulations!), so I am faced with doing a lot of explaining of my treatment history with the replacement oncologists over the next few months. Yesterday, after a wait of about 90 minutes, I had my first opportunity to do so. The result was a delay in the commencement of my chemotherapy until June 14th, primarily because of concerns about stabilizing my weight, my bowels and bladder.

Unfortunately, my weight continues to decline. Yesterday, I actually had an upset stomach which left me declining food. On the scales this morning, I had lost another 2 pounds. That kind of weight loss does a lot to explain my lack of energy, my light headedness, and my inability to recover more rapidly from the surgical complications I experienced.

The good news is that my upset stomach seems to have disappeared as of this morning. But I still find it difficult to eat as much as is necessary to stabilize my weight. Never had that problem before! I now weigh what I did when my wife and I first moved to the Waterloo Region back in 1977! Not that I would advise this method of weight loss for anyone.

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Sunday, May 21, 2006

An Unwanted Journey: Day 0179 - Some Relief

After consulting with the surgeon, I am happy to say that he doesn't think there is anything seriously wrong internally which could be held responsible for the pain I have been experiencing. Instead, he has taken me off my pain medications and started me on topical creams and non-prescription products geared towards slowing down the bowels (Imodium and Metamucil).

It seems to be working, although like everything else I've experienced recently, the progress is very slow. Yesterday, for example, on my birthday, I was able to nap for slightly longer periods of time and to go for a ride in the car with my family without being in pain. Today, I was able to sit in a rocking chair for a quarter of a game 7 eastern conference basketball game. This may sound like a very minor accomplishment, but being able to sit is critical to my recovery. If I am to get back into part-time work again soon, then I will have to be able to sit at a desk for at least an hour or so at a time.

We will continue with our experiments with this new protocol (adjusting dosages) for two weeks from the day I met with the surgeon. If we are successful, then we will have quieted down the bowels and established a baseline of expectations about how I should be feeling and how frequently l defecate and void the bladder.

My medical oncologist wants to get the chemotherapy started as soon as possible. I heard from the Oncology Access Assistance Program indicating that my application had been received and my request for funding accepted. This means that as soon as my medical and surgical oncologists can agree about a start date, everything is set to begin the chemotherapy stage of my cancer treatment.

In any case, it feels like we are making some progress after the many complications following surgery. I'm beginning to sense a shift in direction in my overall recovery. Maybe that's just the optimism of celebrating my 53rd birthday yesterday, but optimism is what I need most right now.

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Tuesday, May 16, 2006

An Unwanted Journey: Day 0174 - Pain and Diagnosis

I find myself in an awkward position these days. I am suffering pain that I truly believe is hindering my efforts at recovering from surgery and subsequent complications. On the one hand, I'd like to be able to assign responsibility for diagnosing the problem and fixing it to a suitable medical authority. On the other hand, I recognize the complexities and timing of presenting symptoms have everything to do with diagnosis and treatment.

Some of the medical personnel (not to mention family and friends) I'm talking to in the past few days have voiced their own frustration. In doing so, they seem to imply that somebody isn't doing their job. That's not my take on things right now. Talk to me in another week; if I'm not making progress on diagnosis and treatment of my pain, then I'll very likely be willing to assign blame. But I fully expect that we will make good progress this next week in figuring out what's going on, where it's occurring, and what to do to deal with the symptoms.

But I'm going for the cure here, as the medical oncologist put it so succinctly yesterday in our consultation. I'm not interested in wasting energy and effort on anything which doesn't directly contribute to a cure. I owe it to myself. I owe it to my family and friends. And I owe it to the entire Ontario medical system. I hope my blog entries reflect that attitude.

I want my attitude to be one of gathering and sharing appropriate information about rectal cancer and its treatment. I want it to be one of cooperation with the entire medical team who are committing themselves to help me achieve a cure. I want it to be one of fairness and objectivity. I want it to be life enhancing.

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Monday, May 15, 2006

An Unwanted Journey: Day 0173 - Chemo Consultation

After a week at home working on recovering bladder function, my wife and I headed back to the Grand River Regional Cancer Centre for consultations about the next stage in my battle against rectal cancer - the chemotherapy cleanup stage. The point of this stage is to find and destroy any remaining cancer cells still lurking about, especially since the tumour pathology report confirmed that there had been some lymph node involvement in one to three nodes.

The medical oncologist was in for a surprise today. I was the first rectal cancer patient at the centre who cannot remain in a seated position for any serious length of time. I had the blood work done in the lab and then requested a bed to wait for the next 90 minutes. Sitting down in the waiting area in the chairs provided would simply have been agony. The bed alternative made the wait acceptable.

We agreed that pain management is a serious issue and that we shouldn't begin the recommended chemo treatment this week until we have a plan to manage the pain. Even more importantly, we need to know where the pain is coming from. I will be seeing the surgical oncologist this week to see about a CAT scan and another possible scope examination to see if there is any serious source for the pain; the most serious would be an abcess in the colon or rectum.

Assuming we make progress on pain management and there isn't anything seriously wrong internally, then by about May 26th, we should be ready to start chemo.

The recommended therapy is different from what I anticipated. It goes under the generic name FOLFOX. It will be a cycle of 14 days for 4 months and will require another PICC line inserted. The drugs include leucovorin, 5-fluorouracil, and oxaliplatin. Every 2 weeks, I'll spend four hours the first day in the chemotherapy suite infusing the leucovorin and oxaliplatin. At the end of that 4 hours, the PICC line will be hooked up to the 5-fluorouracil for 46 hours. On the 3rd day, a CCAC nurse will disconnect the 5-FU. Then, every day during the next 2 weeks, I will flush the PICC line myself (after being trained to do so, much like the self-catheterization).

Side effects will be cumulative during the entire cycle, but there may not be much nausea. A more likely side effect will be sensitivity to anything cold to the touch. But, if I've learned anything about side effects thus far, it is to be prepared according to what the literature suggests, and then wait-and-see.

One of the oddest things about this next stage is that oxaliplatin isn't covered by provincial drug plans. This means that my wife and I must fill in an application form to the federal oncology access assistance program about our finances. That agency then determines what level of funding they will provide. Then, the GRRCC will provide us with the oxaliplatin free of charge and we will ensure any federal reimbursement for the drugs goes back to the GRRCC. Ridiculous, but necessary, given the state of provincial coverage of drugs used elsewhere in the world as standard treatment. Oxaliplatin would certainly qualify as a standard treatment. Too bad OHIP doesn't think I'm deserving of coverage for a treatment that could save my life!

So, the next stage is just around the corner. There will be more tests, scopes, medications, and disruption of ordinary life.

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Sunday, May 07, 2006

An Unwanted Journey: Day 0165 - Healing at Home

Since March 28th, I have spent 31 days hospitalized, under 3 separate admissions, the last of which was for 18 days and by far the most serious in terms of potential harmful consequences. The pulmonary embolii meant I could have died, suddenly.

But the cardiac care specialist who coordinated my last stay in hospital had me discharged on Friday, May 5th. Since then, I have been engaged in the very important and physically and emotionally draining business of healing.

This time, I have home care nurses visiting me regularly and monitoring my vitals. They have also been involved in educating me about intermittent cathaterization. Although it is definitely an unpleasant experience to self-catheterize, it means I can be at home with my family, eating home-cooked food, listening to music and watching NBA playoff action, and discovering patterns of pain management more readily than would be the case in a hospital room.

Given all the complications I have experienced, I have wondered whether this blog may unnecessarily frighten others about to embark on a similar treatment protocol. But this is reality, for me at least, and I do believe it is better to be informed of all possibilities than to encounter some situations for which you are totally unprepared.

My job, as the home care nurse explained so simply this morning, is to eat, rest, and allow the body to heal, something which, given the complications I've experienced, requires a lot of calories and a lot of time, a positive attitude, and a willingness to set aside expectations for the rate of recovery both I and others have had beforehand. Right now, I figure I'm about 3 weeks behind my preliminary expectations as I was released for the first time from hospital after surgery. Doing useful work for my employer will simply have to wait until I can do useful work for myself first, things like walking, going to the washroom, showering, sitting down for more than 1 minute, and being awake for over an hour at a time.

It's a beautiful Sunday here in Kitchener, Ontario. I can enjoy the view through the patio doors and watch my family outside doing things which seem like remote possibilities for me right now - pulling dandelions, mowing the lawn, and trimming the weeds from the patio. Unfortunately, writing this blog entry is the most ambitious task I can consider.

I will recover and I will regain optimism slowly.

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