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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