I woke up this morning at 4 AM as though someone had flipped my awake switch. Those six hours were the best and longest sleep I have had in many months. I will never be able to thank Wendy enough for saving me the agony of another night in Emergency. Continue reading “Training Wheels Off”
I am safely at home on our comfy couch writing this while my wonderful wife cooks a real, palatable, non-hospital meal. The doctors wanted to keep me in hospital because they had ordered a echocardiogram and they wanted to make sure it got done while I was still admitted. Apparently the ultrasound department tends not to get around to completing such requisitions very quickly unless the patient is already in the hospital. So I am still in hospital… at home.
This latest adventure all started with a visit to Wendy’s grandbabies on Easter Sunday. For a while now I have been feeling increasingly weak, or decreasingly strong, as most of you know. On Sunday, without any appreciable exertion, I managed to wind myself to the point of chest pain, palpitations, radiating pain and dizziness. It passed in a half hour or so after taking an antacid so we concluded severe heartburn. I thought we should probably mention it to the medical oncologist at my pre-chemo appointment yesterday. She immediately postponed chemo and strongly recommended I get my denial riddled ass down to the emergency department.
You’ll remember my posts about how the emergency departments get shit done. They can get X Rays, CT scans or blood tests done in minutes or hours instead of days, weeks or even months when your GP requests them. In the time I was there, I was X rayed, CT scanned, blood tested 5 times and saw the ER physician and three specialists. Impressive. No?
There is, however, a significant difference between being “admitted” to hospital via the ER and being admitted for a planned procedure. When they plan for your arrival, there is a room waiting for you with a proper hospital bed and all of the privacy, wifi and tv you can afford. In Emergency, you get to wait amongst lines of stretchers while the triage nurses identify your priority, then they plant you on another stretcher behind a thin curtain with a screaming trauma victim on one side and a vocally competing drug addict on the other. A stretcher is not, and I by my sore bones repeat, not, a bed. When I was “admitted”, the doctor told me I would be on the list for a real bed in a real room as one became available. Never happened. Emergency wards are not, my friends, a place that you want to try and sleep. Avoid them. Unless you really need to get shit done.
The results of the shit they got done for me yesterday are not good news. It seems I have a visible thromboembolus straddling the bifurcation of the main pulmonary artery trunk. In real english, that’s a big nasty blood clot in my lung that has caused a shortage of blood to my heart which in turn caused the chest pain and maybe damage to the heart muscle. A deadly combination if not caught early enough. It was caught early enough. I will never make any assumptions about medical matters again. I’m going to have my next surgeon remove my denial gland.
Those of you with a keen appreciation for irony will love the treatment plan. I’m sure the mischievous deities patronizing irony in medicine are laughing their eternal asses off. Remember when I came home from the surgery that turned my colon into a semicolon? I arrived packing a stack of syringes loaded with a drug called Heparin; specifically designed to, you guessed it, prevent exactly the sort of blood clot they found yesterday in my main pulmonary artery trunk. That’s not the ironic part. I hated those syringes and dreaded the daily chore of stabbing one into my abdomen. The hatred and dread were only tempered by the countdown to stab freedom as the stack got smaller one needle at a time. That last needle was plunged into my bruised and pockmarked belly with pure joy. Guess what, I get to do it again. Every day for the rest of my life. You gotta laugh. I did.
The cardiologist followed that body blow with a lightning fast double jab. She told me I would stay in hospital at least another night to facilitate an efficient echocardiogram, and there was no room and real bed available. Worse, because I no longer needed close monitoring, I was summarily transferred back to triage and stuffed into a remote corner that brought tears to Wendy’s eyes. That’s when she took charge.
Within minutes she had two separate nurses on the phone to the doctor to argue for a “pass” so that I could come home for the night without being discharged from the hospital. Something the doctor herself never thought of until the nurses conveyed Wendy’s sound argument. A quick Heparin shot and the extraction of a promise to be back promptly at 7:00 AM and I was out the door.
So I am amending my previous statement that Emergency Wards get shit done. It’s ER Nurses, under the firm hand of my darling wife, that really get the best shit done.
My silently suffering, unconditionally supportive wife, Wendy, has broken her silence. She sat me down yesterday and delivered a well earned load of shit. Or she would have sat me down had I not already been laying down. That, in fact, was her point. She has been watching me stumble from bed to the couch and back to bed again for far too many days. She recognizes depression, weakness and surrender when she sees it, and she will not tolerate any of it. Clearly, I will stand and fight this cancer or any attempt to resist her strength and determination will make fighting cancer look easy.
She was absolutely right. I had allowed the negatives to pile up and push me into an acute depression. The chemo-sick, physical exhaustion combined with lack of information and a long spate of crappy weather had beaten me. I had given up, thrown in the towel and found myself a comfy spot on the couch to wait and die.
The worst of the chemo sickness is over for this round, I hope. Yesterday and Monday were the worst. I sure could use some practical advice on getting through the bad days without wanting to sink into oblivion.
If there are any doctors reading this, I need to tell you the profession must improve communication with patients. I sit here day after day knowing that stage 4 colorectal cancer means a two year survival rate 95% of the time. When tests, surgical results or other information exists, I need to know about it. Waiting until the eventuality of our next appointment just is not good enough. Good news or bad news. It makes no difference. In the absence of facts, my imagination is more than capable of filling the gaps with horrors and trepidation. Keep me informed so I know what the fight is all about. I’ll come up swinging every time if I know what the target is.
The weather has been my excuse for keeping my ass on the couch. Its too windy and rainy to take my sick body outside for a walk. After all, I can’t risk catching a cold, right? I need to get my soggy noggin past those thoughts and get my body moving again. Indoor exercise. What a novel concept. I’m starting today with some stretching and light aerobics. No more moping.
Thank you Wendy. I love you.
Chemo killed my funny. Its not meant to do that. I’ve now consumed three batches of their poisons. One in December, one two weeks ago and they just removed the portable bottle today that pumps it in for 48 hours. Its just not funny any more. I’m sick and tired of being sick and tired and can’t even string an original thought together.
Today the nurse at general daycare, while removing the pump, couldn’t get any blood back from the power port. That means a special trip to the cancer clinic tomorrow morning so they can squirt my port full of something called Alteplase. It’s essentially a clot buster that will dissolve the platelets closing off the end of the power port tube where it enters my jugular. Exactly what I hoped to be doing the morning of the day of my follow up with the amazing surgeon who turned my colon into a semicolon for me and left me my first ever surgery scar. @DrCarl_Vancouvr
That it took this long in life to acquire that first mark of medical intervention is a wonder. All the stupid shit I got up to in the past 57 years should have landed me in an operating room hundreds of times. But what makes matters worse is the fact that this time would have been entirely unnecessary had I listened to everyone who says, “get tested” or if I had listened to my own body four or five years go when I convinced myself I was suffering from hemorrhoids.
There are such simple tests that will tell your doctor whether you should have a colonoscopy. If you can take a shit or give a little blood, your doctor can determine your risk. If you can’t take a shit, like me six months ago, then you’ve waited far too long.
Don’t do it. If anyone in your family history had or has cancer, or if you’ve celebrated you 50th birthday, make an appointment and ask a doctor for a screening. Cancer is real. It’s serious. It isn’t what happens to the other guy.
Why get tested early? Colorectal cancer starts as a pre-cancerous polyp that can be removed during a routine colonoscopy; virtually 100% cure. Wait a year and you have stage 2, the polyp has grown into the wall of your intestine; laparoscopic surgery and 70% chance of a cure. Give it another year it’s stage 3 and has grown through the intestinal wall and involved the lymph nodes; major surgery with ileostomy or colostomy followed by chemotherapy and a high risk of recurring cancer next year. Do what I did and ignore it for four or five years and you’re in stage 4 and a world of hurt. The cancer has spread from the lymph nodes to other parts of your body. You get it all; Chemo and radiation, the major surgery, the ostomy may be permanent, months of chemo, more surgery and the very real possibility of being dead in two years anyway.
I may sound like a cancer screening evangelist here but if one of you or one of your friends get tested early and avoid what I’m going through, maybe I’ll get my funny back. So do it for me! Help revive my funny by facebook sharing, tweeting and google plussing this plea for early screening. Those buttons below aren’t there for decoration.
I’ve been experimenting with Twitter (@) as a way to reach out to people who might be interested in reading my these ramblings. The reception has been gratifying and surprising with nearly a hundred complete strangers taking an interest in only two days. Thank you all for following.
Today’s topic, courage, arises from a message from one of those new followers. She spent an hour or so reading the archives and recent posts at colontosemicolon.com and was compelled to reach out and tell me how amazingly couragious I am. It made me think. Continue reading “I don’t feel so courageous”
Time becomes elastic when cancer enters your life. A day can stretch to infinity yet a month can be gone in a snap. Your every day thought is consumed with when and how long or where the time has gone. When will the clinic call with an appointment, a diagnosis, a biopsy result? How long have I got? How long can I wait? How can it be chemo day already? Where have the months gone?
For most of your life you settle into a comfortable routine of work, family and social life. Most of the time it is your solace, security and home. Sometimes you come to resent that routine and see it as a rut. It seems like an endless, laborious, mind-numbing grind. Treasure those times, the good and the bad. When your life is thrown into turmoil, you will long for the worst of days past.
As of today I aspire to being unremarkable. I used to want to be unique and successful like everyone else but I have discovered that unremarkable is the best I can hope for this year.
It seems like a less than inspirational goal, I know, but “unremarkable”, is the word doctors use when they analyse a scan that shows no abnormalities. No cancer.
Lets all be unremarkable together.
Yesterday I read an article published by a research group that studied the effects of chemotherapy and radiation on cognitive function in colorectal cancer patients. Very specific stuff and thoroughly researched by their own accounts.
Hundreds of participants with cancers in their asses filled out forms and questionnaires that purported to measure their powers of thought. Later on, they did it again. Think about that. All these people whom we can presume are rather distracted by the fact that a deadly growth has invaded the most private core of their bodies are taking tests to determine whether maybe they are a little scatterbrained. Can you guess the results?
There is a measurable decline in cognitive function among colorectal cancer patients. Surprise!
I still think I’m a pretty smart guy. At least nobody else is feeding or dressing me yet. I also know for an absolute, undeniable, rock-solid fact that the chemo messes with my head. I haven’t filled out any cognition related forms or questionnaires while those poisons course through my body, but I have been playing Scrabble with my sisters. When I’m on chemo, they kick my stoma.
Now, to be clear, I don’t know if Scrabble skills are a valid measure of my ability to think, but I do know my average Scrabble score drops dramatically during chemotherapy, as does the number of words I can rattle off that contain a q and no u. Once the chemo is done, my game returns to normal.
My personal findings are not entirely inconsistent with the findings of the researchers. They say there is no correlation between reduced or impaired cognitive function and the use of chemo-radiation therapy but they also say that there is a measurable decline as I mentioned earlier. You see, patients with colorectal cancer who had no chemo-radiation treatments had the same tendency to become hard of thinking as did those who were poisoned and cooked.
Does this mean “chemo-brain” is a myth? They seem to think so. And, after all, they are university trained researchers, right? However, I’m not sure the data they have supports that conclusion. Maybe chemo-brain is transient and doesn’t affect us in the long term. I hope there is some truth in that. Maybe they didn’t continue measuring those patients long enough for them to recover fully. Or maybe I’m not as smart as I think I was.
Whatever the case, their ultimate conclusion is that the cause of cognitive impairment in colorectal cancer patients remains unknown. So there. We don’t know what makes it happen but those cancer patients are a dumb bunch of stomaholes. That’s a healthy chunk of hard raised cancer research money well spent.
My opinion is that chemo screws with your head but it isn’t necessarily permanent. I also believe the emotional effects of having life altering and potentially terminal illness can mess with your head for a very long time.
Maybe we should all organize a Terry Fox run so these cancer-free geniuses can go back and retest the survivors.
I have, successfully I hope, copied all of the old posts from the facebook blog to this page. I think I have them all posted to the correct date but, if not, perhaps the jumbled order will improve readability. You can browse them by date if you find the “Archives” in the menu on the left.
Halfway through round two of chemo now. Or round one of this series if we don’t count the December session. The nausea is mostly gone and I don’t need the pills to temper the urge to puke. I’ve also forgotten to take any morphine for the last 24 hours. So much for tapering off carefully. Thankfully there doesn’t appear to be any monkey on my back other than the one that carries my scotch bottle, and he’s getting bored for lack of attention.
If you haven’t already Followed this new blog, take a minute to explore the menu. Registering to follow it will result in email notifications to help you never miss another word I write. Don’t let that fact stop you. Oh, and there is a “comment” link below every post. Please feel invited to use it.
At least half of your friends have someone in their lives struggling with the cancer dragon. Please make a habit of sharing these posts and encouraging them to visit.
Hello readers. I’m glad you found your way to my new Blog site. George’s Cancer Blog on Facebook just doesn’t have the same cachet as a real WordPress published Blog. I have no idea what the difference is, but I am assured it’s true. So here we are on my new WordPress… er… spot.
In all seriousness, I have been told that transitioning to writing a book, as many of you have encouraged me to do, will be aided immensely by using a properly formatted blog. So let’s give it a try, shall we?
The title of this Blog, and the working title for the book, is “: 2 ;” or Colon to Semicolon. I think it captures the core subject while hinting at the humor we have tried to find somewhere in my bowels over the past eight months. In some ways I feel this is your book too. Especially those of you who have been here from the beginning. So I am open to other suggestions for titles. Bring ‘em on!
As you can probably tell from the fact that I have a working title, and that must after all be the most important and difficult part of writing a book, I’ve been giving a lot of thought to beginning the process. I have asked around and met a few people who know something more than I do about books, publishing and why new spruce shoots are a paler green. One piece of advice that I am sure is excellent is to compile a short series of excerpts so a publisher or agent can get a snapshot of the writing, style and content. To that end, I’m going to ask you all to help out a little.
Please go through the old posts on facebook and tell me which posts are your favourites. Find the ones that you think best show what you like about my writing or which you have found particularly informative or helpful in your journey. Thanks in advance for doing this.
So welcome to :2;. I hope you find it as comfortable as the original and twice as green.