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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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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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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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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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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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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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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An Unwanted Journey: Day 0158 - More Morphine Please

Two steps forward, several steps backward...and then there's the option of doing nothing but lying flat on your back enduring pain worse than at any other time since surgery. On the day of surgery, nurses introduced me to the pain scale - 0 meant no pain, 10 meant the worst possible pain imaginable.

During the first 8 days of recovery from surgery, it was generally at a 2, sometimes creeping up to to 4. But I had my morphine-based self-administered pain pump which allowed me to function most of the time at a level 2.

With the advent of far more serious bladder cramps Friday than I had ever experienced before, we were in new territory. Friday night was absolutely the worst pain-filled night I have yet experienced, with bladder spasm induced pain spiking easily to 5 and settling most of the time at 3 or 4.

Then came the sub-cutaneous morphine. That would settle things down for about an hour, then the pain would reassert itself (2 mg of morphine). By the time morning came around, I was becoming quite adamant about seeing a urologist and finding some other approach to pain management for what looked to be just a terrible weekend.

We finally settled on both sub-cutaneous needle injections of morphine and needle-stick IV administered morphine, received an order for higher dosages, doubled the buscapan muscle relaxant (so-called antispasmodic), and kept the extra strength Tylenol coming every 4 hours. That made life bearable once again. But there will be no consultation with a urologist until Monday.

Doctors wanted to use suppositories, but I vetoed that based on the low anterior resection and my surgeon's unequivocal comment to me not to use them under any circumstances. Too bad they are the best way to relieve pain of bladder spasms!

I saw my family physician on Saturday, had more college visitors and family visitors, and even have managed to gently walk the medical ward hall circuit once each day. But the price of doing so is a spike in bladder spasms immediately afterwards.

I can see hope though. It's like a piece of fruit hanging on the edge of a branch in a tree just too tall for me to reach out and pick it. Emotionally, I am feeling the affects of not having any semblance of control in my life while being hospitalized this third time. But it's best for me and my family for me to be exactly where I am until I have recovered fully enough not to be a complete burden on my wife and sons.

Tomorrow, I'll have another lung scan to see how the PEs (pulmonary embolii) are doing. I may have the catheter removed in order to test my ability to void on my own. If both are positive, then a discharge in the near future seems possible.

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An Unwanted Journey: Day 0155 - IVC Deployed

The process was painless and relatively straightforward for the patient. I was taken to a unit called interventional radiology, put on a stretcher in what appeared to be a standard operating room but with more high-tech X-ray imaging machinery.

Nursing staff gathered tools and apparatus, cleaned the groin area where the catheter would be inserted and basically explained how the procedure would work once the radiologist arrived.

When he did arrive, he further explained what would happen and corrected a mistaken apprehension I had about where the filter would actually be deployed. It did not go to the heart, but was placed in the inferior vena cava, a major vein leading from the legs towards the heart. The groin was used to find a point of entrance, contrast die then injected (all after local freezing) to map out the vascular territory on the screen, followed by another catheter being used to push the device into the inferior vena cava, a balloon inflated to open the filter's wiremesh-like structure, the balloon deflated, and the catherers removed.

The IVC filter is now located just slightly below my kidneys in the inferior vena cava. Any deep vein thrombosis with a thrown clot should now be caught in the filter and eventually dissipated mechanically.

I recovered first in the recovery room for an hour, keeping my legs completely still, followed by another 4-hour recovery in my medical ward bed. Finally, in the late evening, I was able to get out of bed and test the closure point for bleeding by using the washroom with assistance of a nurse. I went to the washroom again on my own a couple more time during the night, and all appears to be healing well.

I need a couple days of monitoring my vital signs, eating and drinking normally, and perhaps beginning to move slowely by foot with some assistance. Today or Friday, my family physician is going to visit as well as other family and friends.

This sounds to me like hopeful news! Friends from WWITPRO dropped by a lovely card and flowers. Friends from work have sent cards. Marg tells me I'm looking good and gives me a confirmatory big kiss before leaving after each visit. My sons are starting to joke around with me again, so I suspect something positive is happening.

When I do go home, I fully intend to remain catheterized for a while. I only what one issue at a time to be of concern. I can always schedule out-patient consultation with the urologist about either self-catheterization or intermittment catheterization. After arriving home, I will need 2-3 weeks of recovery before starting the process of consultations with the surgical oncologist or the systemic oncologist or even consider chemotherapy.

I know for a long time, I won't be taking anything health related for granted.

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An Unwanted Journey: Day 0153 - Vena Cava Filters

I totally panicked today.

This morning as I got out of bed to go to the bathroom, I bled out all over the bed, the floor and eventually the toilet. Even though I understood theoretically that the blood thinners could cause rectal bleeding, nothing like this has ever happened to me before and I completely stressed out.

The nursing staff cleaned up, took me immediately off the heparin, and then started a reversal process using a protamine IV to reverse the thinning effects of the heparin. They took me off all foods and liquids just in case we could schedule an appointment with a radiologist to implant something called a vena cava filter.

This device is meant precisely for patients like me who have had complications with bleeding from blood thinners but who are still in mortal danger of a pulmonary embolism which could rupture a pulmonary artery and cause death. As it turned out, the radiology department couldn't fit me in today, so it looks like tomorrow morning is when the procedure will be done.

The vena cava filter is inserted in a major vein, directed to the heart by x-rays and the skills of the radiologist, and is then deployed in that part of the heart most susceptible to a clot. The filter is like a wire mesh in which regular blood passes through unimpeded but in which clots are caught and prevented from passing through to the lungs.Even with the device, there is no guarantee that the patient will not suffer a fatal pulmonary embolism. But, if all goes well, the device will assist in my recovery from the deep vein thrombosis which is causing my most serious complication to date.

I'm afraid. But I am in the right place should further complications arise. Maybe tomorrow, I'll have better news about making progress on the road to recovery. I truly hope so.

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An Unwanted Journey: Day 0150 - Serious Complications

This entry will be short.

First, thanks to Ian for filling in for me when the most I could do was breathe. Second, thanks for family and friends for visiting and taking care of me as I suffered through more complications arising from surgery.

My brother died of a massive coronary almost four years ago. It now appears that was almost my fate. Tuesday morning, I collapsed at home. After being admitted first to emergency, then to the cardiac care unit, and just today into a standard medical ward, I have run through many tests.

The most important was the lung scan which shows multiple clots (pulmonary embolisms). The next most important was the ultrasound showing possible renal failure and bladder spasms.

What evidently happened was that a clot travelled to my heart, broke up in the heart and then shot out multiple minor clots to the lungs. This elevated by pulse rate and left me short of breath and in danger of a heart attack similar to what killed my brother.

I am now on heparin to thin the blood and dissipate the clots. But I have also had to catheterize again (removing 2-3 litres of urine and blood each day). In addition, I am starting an antibiotic to fight an infection which is probably in the bladder. I still can't move much at all. In fact, I am most comfortable when I don't move at all, simply letting sleep and drugs work their wonders.

I have had a blood tranfusion, iron pills, multivitamins, aspirin, pentaloc (for the bloody ulcer), Tylenol to fight the fever, etc. I've almost lost track of everything I take.

One good thing is that I have regained a minimal appetite, colour in the cheeks, and some coherency in speech again. My haemoglobin levels are rebounding and I do not have the C-Difficile infection that the intensivist first thought might be the case. The precaution was to put me into contact isolation in the cardiac care unit. This meant everyone who came into my room had to gown and wear gloves. Now that the infection has been ruled out, we're back to monitoring the blood thinners and emptying the bladder through the catheter.

I don't know when I'll be home again. I also don't know when I'll be able to walk further than a few feet to the washroom. Maybe soon. Early next week, there will be further tests, including more ultrasounds and lung scans to see the effect of the treatment. In the meantime, I'm just doing what I'm told to do, eating when I can, resting as much as possible, and dreaming of being at home with my family again.

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An Unwanted Journey: Day 0147 - Readmittance

As many of you have noticed, Don has been absent from this blog for the past few days. He was readmitted back into the hospital on Tuesday the 18th. I had another early day at work, so I did not find out about this most recent set of complications until later in the day. Don had been feeling weak and lightheaded throughout the morning, and took a spill on one of his many trips to the bathroom. Don wasn’t hurt, but the lightheadedness continued, so he was taken into the emergency room.

They ran another battery of tests on Don including ultrasounds, lung scans, and blood tests. The doctor believes that most of his symptoms are related to dehydration and anemia, caused by the surgery. He is getting a blood transfusion as I type this, and this will hopefully improve his condition. Don will be seeing a cardiologist and a urologist to have a look at some irregularities in his heart rate and bladder, which all could have been related to surgery.

Ian

An Unwanted Journey: Day 0143 - Surviving

I can't believe how difficult this week has been! The loss of blood has been the single biggest setback I've encountered. I understand gastric ulcers are not uncommon when one has compromised the immune system through radiation and chemotherapy and then traumatized it with surgery. But I felt so good after surgery that the complication really threw me completely out of kilter.

When I first arrived home after surgery, I was walking around the block. Right now, I can barely walk to the washroom. That, too, is something that is difficult to handle. Urinating is almost more difficult than bowel movements, mainly because of the bearing down that I have to do to accomplish the task. Everything right now zaps my energy and leaves me feeling on the verge of passing out. I am definitely not used to this!

But things will get better. My haemoglobin levels fell dramatically as I was vomiting blood, but they remained steady enough for my surgeon to give me approval to be released again last Wednesday. Because I am not getting my blood work done daily anymore, I can't tell how well they are rebounding except for the colour in my face and my daily energy levels. It feels like things are improving, but I still don't want to eat or move about much.

When I arrived home, I discovered that the power adapter on my notebook computer had died. It will be another couple days before a replacement arrives. Not that it matters much. Since my readmittance to hospital and second discharge, the last thing I want to do is look at the computer. It just takes far too much energy.

Thanks to all the continuing well wishers. I will become more coherent and capable as I recover, but it will take more time than I ever would have anticipated with this ulcer complication.

My wife and children have been attending to my needs. A very good friend has made regular (and short) visits to my bedside and then to my home to offer words of encouragement. Thanks, John.

I am obviously losing weight, so don't be too surprised if you eventually see someone a little less than you would otherwise recognize. This might be a good thing!

Anyway, doing this has tired me out completely. I'll write again when I can.

An Unwanted Journey: Day 0136 - Setback

After yet another long day in the local bakery, I returned home to find out about an unwanted setback in Don’s Unwanted Journey. He had had a very difficult day, since he had not been able to keep any food down. My mom informed me that after a very long day of sickness, she was taking him back to the emergency room for what would become yet another stay at the hospital.

When my parents did not return before midnight, I drifted off to sleep. I was awakened bright and early by a call from my boss, and after debating the merits of going in early; I left my room to look for Don. Bedroom? No. Family room? No. Bathroom? No. My Mom informed me that Don had been re-admitted into the hospital. The on-call doctor told Don that he might have a stress ulcer from the rigors of surgery.

The surgical oncologist will be seeing him tomorrow for a more specific diagnosis. He may be in the hospital for a few days, but it should not be too long. We hope to have him home soon, with a new bottle of pills to handle this hurdle in his Unwanted Journey.

Ian

An Unwanted Journey: Day 0134 - BM

Those two letters could stand for a variety of things. In my case, and for my experiences in the past 24 hours, they stand for Bowel Movement, Bad Medicine, and possibly Better Management.

Bowel Movement
Eating solid foods again is a blessing, but waiting for the resected bowels to pass the waste of that new food made me a little apprehensive, so much so that I called the surgeon's office to see how long I should wait before becoming concerned.

Sure enough, 2-3 hours after the phone call, I began passing stool, something which may not be a big deal to most people, but to someone just out of hospital after a resection, this was incredibly good news.

The problem was that it continued, just about every hour, eventually becoming little more than gas and liquid. By then, I was feeling sick.

Bad Medicine
I had been prescribed Tylenol 2 (laced with codeine, a narcotic, and caffeine) orally for post-operative pain relief. It was only Friday morning, after suffering all night, that my wife figured out that I was having a bad reaction to the pain killer. Not only was it doing nothing to relieve the lower back pain, but I was experiencing nervousness, accelerated respiration, inability to sleep, and eventually stomach upset.

After stopping the medication, things got progressively better. Still, the set back cost me another day of nothing but trying to sleep and sip a few liquids. I could eat nothing more than apple sauce and some toast and jam. I slept and slept.

Better Management
The experience has made me realize again how medication can be the source of trouble and not always the cure one hopes for. For now, I'll stick with regular Tylenol, plenty of rest, and hope to regain an appetite. Managing my recovery may be a little more complicated than I anticipated.

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An Unwanted Journey: Day 0133 - Home

It's the sweetest thing I know of, just spending time with you.
It's the little things that make a house a home.
Like a fire softly burning and supper on the stove.
And the light in your eyes that makes me warm.

John Denver, Back Home Again

Yeah, a tad heavy on the syrupy sentimentality. But I sure do appreciate being home again after being discharged from Grand River Hospital yesterday morning. I walked to the car unaided and was able to climb into the seat without help, but I did avail myself of a pillow to protect my incision area from the seat belt. Every little pot hole reminded me that although I was on my way home, it would be a long time before my abdomen feels normal.

Before leaving the surgical ward yesterday, my student nurse, who was with me through the surgery itself and for two days after, wondered if she could remove the staples. It was her first time, and I was apprehensive, but she did a good job removing all 35 metal staples and putting on the temporary clear tape to protect the incision.

When we arrived home, we bundled up and went for a very slow walk to one corner and then another of our street, me dipping my toes into the pavement of the side streets and commenting, "One small step for man, one giant leap for a recovering patient." That was enough exertion, but it felt good to be outside breathing the crisp April air.

Most of the rest of the day was devoted to experimentation. It's amazing how much we take for granted in our daily lives about getting into and out of chairs, lying down in bed, going to the bathroom, climbing and descending the stairs, putting on shoes and socks...all the minutiae which is the background music of our lives. When you cannot take all those things for granted, then you have to experiment and find ways to help yourself or acknowledge help offered from others.

I am healing well. In fact, there is no need for me to have any home care. I can start showering, albeit carefully, eating high fibre foods and doing whatever will assist with the healing process. Just being here at home makes that process so much more attractive.

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An Unwanted Journey: Day 0131 - Milestones

Life is a series of milestones while recovering from surgery.

The first, and by far the most exciting for me, was temporarily waking up in the recovery room after the operation, asking questions of the student nurse assigned to me from Conestoga College, and then drifting back to sleep while they transferred me to the surgical ward. Knowing that you are alive, albeit almost immobile, and being awake to see my wife and son right after surgery was one of the most euphoric experiences I've had this past week.

Then I had to move on to other less sensational markers of progress along the road to recovery. In the ward, I realized that of all the tubes and devices associated with lower bowel surgery, I was without a nasogastric tube and a drainage tube from the incision. This meant there would be two fewer things to monitor.

But I did have an intravenous line delivering the standard saline solution along with Zantac (prevents reflux of the stomach acids during healing). On the same IV pole was another device for controlling pain medication (dilaudid) through a PCA. Not to mention the urinary catheter and its attendant bags for voiding fluid waste.

Over the next few days, I measured my progress through four things. One was the number of loops of the surgical ward I could walk during the day while holding onto the IV pole. These I gradually increased, proud that there was something under my control that helped my recovery. The second was the gradual decrease in the use of the pain medication until I was taken off the PCA pump and put on ordinary Tylenol oral tablets. The third was the introduction of clear fluids, then other fluids, then finally light, solid food. Finally, getting rid of the urinary catheter and IV itself was definitely life enhancing.

All the way along, there were minor victories and frustrations. My emotions were all over the map (as I've already indicated). At times I was elated. Other times, all the nurses and associated medical practitioners irritated and frustrated me - different stories from different folks. Then there was getting used to feelings of pain-medication induced highs and depression like I haven't experienced in many, many years.

Even when all the tubes and devices were gone, and I was eating solid food, the victories seemed compromised by increased pain from abdominal gas, going to the bathroom and passing only blood and gas, finding it impossible to be comfortable in bed, not sleeping, being awoken my nurses for vitals, blood samples, and oral pain medication. Nothing seemed to be a straight-forward victory or defeat. They were unceremoniously mixed together.

Not only were visits from family and friends a welcome relief, I looked forward to the short, 2-3 minute visit from the surgeon each day. His visits were my red-letter markers for progress during 8 days of hospitalization.

But I'm alive! I am being discharged! My wife and children love me! I have good friends. My medical team is doing their best, and I strongly believe we're moving in the right direction.

Stick with me. This unwanted journey is nowhere near complete, but we've turned some corners and achieved some important milestones along the way.

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An Unwanted Journey: Day 0128 - Mood Shifting

I guess it was, if not inevitable, highly likely. But I still feel like a schmuck. I lost it with the person who least deserves it. My wife and youngest son came by in the evening for what was my wife's third visit of the day. But by the time they arrived, I was ready to vent. I apologized before the visit was over, but she still didn't deserve it. And today, even though Health TV says to expect mood shifts, I still think I could have toned it down.

Friday was called Day 3 in the Colon/Bowel Surgery milestones chart the nursing staff use to orient themselves to typical things to be done for patients as they recover. The milestones are averages of what patients experience and when they experience it. I've been progressing faster than average, so I think part of the problem for the day was my increasingly high expectation levels for myself. Walking the surgical ward loops, for example - Surgery Day, 3 loops; Day 1, 5 loops; Day 2, 6 loops, Day 3, 8 loops, (so far today, Saturday, 11 loops).

Lack of sleep was another problem. Thursday night, I was unable to get any decent sleep from the noise of the ward, constant interruptions and general discomfort. It catches up with you.

Then there were a lot of visitors. It really was great to see so many people, but I had to start asking friends and family to leave.

Then there was the apparently good news that a semi-private room was ready for me. Unfortunately, that meant a lot of unanticipated work for me, given the lack of sleep, visitors, and walking I'd already done. In addition, the nursing staff didn't seem too interested in setting up my room so I could use the computer, the TV, or even gain access to the call button. By the time my wife arrived, I was in a foul mood.

Saturday promises to be much better. I had a good sleep, my surgeon has authorized me to take some food for the first time since Sunday, and my catheter will be scheduled for removal for Sunday. And my son will have a lengthy visit with me this evening so we can watch two Final Four basketball games together with a head phones splitter device. I'll also have more visitors, but I'll be quick to suggest they stay only as long as works for me.

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An Unwanted Journey: Day 0126 - Visitors & Walking

As Ian and Patrick have already indicated, my surgery went very well on Tuesday. I want to thank them for doing the guest blog, making sure readers were informed quickly of the results. They did a great job. I'm a proud Dad!

I've seen my surgeon twice since surgery. He seems pleased with my progress. Actually so do I. I am definitely very sore, especially along the long incision line. Getting in and out of bed is one of the most painful things I've ever done. But everything else is working out well. I've got my notebook computer, my Pocket PC, a TV, a telephone and headphones to make sure the fellow patients in the surgical ward aren't disturbed. I've made some friends in the ward already, one of whom has invited my family to visit him in Listowel on his farm for lunch in the summer when we've both recovered sufficiently.

The nursing staff has been fantastic. They keep pushing me to practice deep breathing with the inspirometer (I think I've finally got that mastered now), to get out of bed and take tediously slow walks pushing the pole with my IV drip, medications, and Foley bag. Yesterday, I made three loops of the surgery ward hall, today four.

Our parish nurse is a nursing teacher at Conestoga College. She was able to get two student nurses for me on Tuesday and Wednesday. One nurse is using my story for a case study, and the other was able to witness the anterior resection surgery directly in the operating room with me. They both lavished me with attention. Getting to know them was a privilege and a blessing.

It is difficult sleeping and keeping comfortable at night. When you have no abdominal muscles left, it's amazing how little you can do to adjust. The ward is also noisy. But the patient controlled analgesia means that I can administer pain killers and get to sleep for an hour or two at a time in the night. Most patients here seem to have the same problem with sleeping, but my incision is, I think, the most painful right now.

A couple good things happened. No drain from the incision and no nasogastric tube. I've also had an incredible outpouring of well wishes from friends, family and colleagues. Today, I had visits from my immediate family, my mother and father and uncle, and the birth maternal grandparents of our sons.

There has been some kick starting of the digestive system already, mainly in the stomach and small intestines, but not even a hint yet of passing gas. As soon as that happens, we'll start reintroducing fluids and then low-residue foods. But core recovery is going to take a very long time. I can't do anything with my abdominal muscles at all except grimace in pain.

It will take time even to respond to all my well wishers. Writing is not easy right now, so I may simply back off for a while yet. This post is simply to tell you all that I've made it through surgery and have good reason to feel quite optimistic.

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An Unwanted Journey: Day 0124 - High Spirits

Just after dawn another step in Don’s Unwanted Journey, a total mesorectal excision, began. At 6:30 we were lead into a changing room where Don prepared for the most invasive part of his battle with cancer, the removal of his tumor. A nurse led us through the corridors of the hospital to the family waiting room before Don’s surgery. We sat in that room and anxiously discussed what was in store with his student nurse, which he was lucky enough to get with the college strike in Ontario ending the day before. Since this was her first surgery as well, we were all a little nervous. As the clock ticked onwards towards 8:00, a nurse came for Don and we said our goodbyes and wished him all the best.

This wasn’t a short operation by any stretch. But an entire ipod battery charge and most of Brave New World later, the doctor came to tell us the news. The surgery had gone well! He had successfully removed the tumor without the need for an ileostomy. After a couple of hours in recovery we were finally able to see a very groggy and very talkative Don. We were told once he was awake, he asked countless questions, and the nurses said “he must have access to the internet”. This statement really sums up how Don has fought cancer in his own way throughout this unwanted journey, knowledge. He has an insatiable need to know everything he could about what was happening to him.

When he was finally moved out of the O.R. to his bed for the next week or so, saying he was stoned would be an understatement. His pupils were the size of pie plates, but he seemed in very high spirits. He says that he “is feeling better than expected” but he is already bored. I’m sure you loyal readers will see him back writing blogs within a few days. For the time being my brother and I will be handling the blogging, and will try to post regularly about Don.

Ian