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Homepage – Forum Forums Inspirational Survivor Stories Greg N’s story – Incredible positive attitude & outlook!

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    Nightingale
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    DIAGNOSIS: NMIBC, MIBC, METASTATIC BLADDER CANCER
    TREATMENT: TURBTS, BCG, NEOBLADDER, IC, CHEMO, Radiation

    …with permission from Liz Neely

    A Tribute to Greg:

    Every once in a while a person comes along that you never will forget. Greg Neely was one of those people. Greg was a Bible teacher, church elder, insurance agent, public speaker and a strong advocate, spokesperson and fundraiser for Bladder Cancer Canada.

    Greg’s story is nothing short of remarkable and an inspiration to us all.  He had one of the more complicated journeys with bladder cancer.  Unfortunately after several surgeries, treatments and many chemo/radiation treatments, he lost his battle with this disease.

    I have included his story not only because of the inspiration and humour he provided us with but to share with others so they may learn from him even after his passing.  One of the last things that he did was to write a book, “The Healthiest Guy I Know”.  When you read his accounting of all his health challenges you are inclined to think, “Is he crazy? How could he with all those issues, consider himself healthy?  What I learned is that it is a matter of personal perspective.  Yes, to outsiders a person may seem like they are on death’s doorstep but somehow they are more alive and sensitive to their world around them because of this and it is a mindset.

    One of the secrets to Greg’s success was his faith.  He was a devout Christian who not only practiced his faith, but shared it too.  He stated quite clearly in his book, “The Healthiest Guy I Know” it was his faith that sustained him when the news wasn’t good, and his future seemed bleak. In that sharing, he helped countless numbers of people realize that they can rise above their problems.

    The majority of us cannot even begin to imagine the strength, courage and determination that it took to get through the last stages of his journey with bladder cancer but Greg was true to himself right up until the end.  As Liz stated in her story, even when his time was running short he still had people come and visit him in his bedroom.  Many people found his stories, advice and counsel uplifting and healing.  I was no exception. When I joined Bladder Cancer Canada in 2010 after experiencing a recurrence, it was Greg who helped me understand and put things in perspective. This greatly helped my mindset in dealing with my own situation with this disease. Liz was concerned thinking that this might prove to be too taxing on him but she saw that it gave him purpose and kept his mind active and most of all, she saw God at work in all their lives. Greg passed away on September 16th, 2015. He was and is still greatly missed. May he rest in peace.

    Greg’s Story: **Info used/excerpted from “The Healthiest Guy I Know” – permission obtained from Liz Neely**

    “Health to me is a mind and soul matter; it is only partially to do with my body, which on occasion causes some concern…” GN “The Healthiest Guy I Know”

    My first health challenge was the diagnosis of Juvenile Diabetes (Type 1) when I was a teenager. This was no mean feat especially occurring during my peak growing and eating years.  I learned about the diet changes and other ultimate challenges. My parents had already set the example with what I saw of their reaction to my diagnosis. It was with a quiet, simple acceptance and an attitude of learning what they could about it and get on with living. I learned to do that too, except for the rotten hospital food.  I could never accept that.

    My second big health challenge occurred in December 2000 with a mild heart attack. It was first treated with the insertion of a stent to clear a blocked artery but the stent blocked up within a couple of months and it became clear that bypass surgery was necessary to give myself the best chance of recovery.  This was a trying time for me.  I was concerned about the seriousness of the surgery and the risks it entailed.  I may not survive or I could be left disabled and felt if this were to happen I would be a real burden to my wife and two sons.  My anxiety led me to spend a long session in prayer in my study seeking the peace and God’s will in this situation. I quote from scripture Philippians 4:6 “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.” After that long session I felt peace knowing that my mission on earth was not yet finished.

    The surgery was successful and I enjoyed some stable years with my health but it was not to last.  I started to notice blood in my urine in January 2008.  I originally thought that I had burst a blood vessel from all the snow shovelling that I had done.  Since the blood disappeared after a few days I forgot about it until it reappeared in February for a day or so and then it disappeared again.  I was convinced that the problem had resolved itself. When it returned for a third time in March I began to wonder if I had an issue with my prostate.  The blood disappeared for a third time and reappeared once again in April. By this time, I mentioned the issue to my wife, Liz and we both agreed that a trip to the doctor was necessary.

    I went to see my doctor at the end of April, still not convinced that this was anything to worry about.  I expected my doctor to tell me that I was dehydrated and to drink more water.  When I mentioned the blood in my urine to my doctor and that I wasn’t worried about it, I was surprised to find out that my doctor was. When I pushed my doctor for his thoughts on what it might be, he stated, “We have to rule out bladder cancer.”  I was nothing short of stunned at this possibility.  I knew a couple of people with bladder cancer but didn’t actually know anything about the disease itself. I had thought it could be an infection or a kidney or prostate issue.  Thankfully my physician didn’t treat me with antibiotics but ordered x-ray, ultrasound and cytology tests. When abnormal cells showed up on the cytology exam, I was referred to a urologist who wanted to perform a cystoscopy exam.

    A cystoscopy exam is not going to be on anyone’s list of favourite things to do anytime soon, and I was no exception.  For those of us that have had this examination we can only wish for physicians and researchers to come up with a much less invasive alternative for investigating the inside of the bladder.

    So I say in comes the cystoscope! Think garden hose! All I could think about was the opening line from the television show Star Trek…Space: the final frontier…All I could think about was that the final frontier for me was now being explored and I was glad that it was not a five year mission.  The doctor was certainly boldly going where no man had gone before! It would only be a five minute mission if I was fortunate…And (they) found new life and new civilizations!  And they were the enemy; tumours.

    A short time later I found myself in hospital to undergo the surgery that almost every bladder cancer patient starts with; a TURBT or Transurethral Resection of Bladder Tumour.  This is a scope surgery whereby the surgeon inserts a scope up the urethra into the bladder and cuts and cauterizes the tumours, taking samples for biopsy to determine the stage and grade of the cancer. After the tumours were removed, my doctor filled my bladder with a post op chemotherapy drug called Mitomycin C and left it in for a couple of hours.  The purpose of this drug is to hopefully kill off any remaining cancer cells.  It is a caustic substance that can really irritate the inside of the bladder especially right after surgery.

    I found out just how challenging it can be to void for the first time after this surgery. I don’t think any other patients heard the response, so high pitched it was.  But I suspect that dogs were barking and howling for miles around the hospital ward where I was gamely trying to empty my now tumourless bladder.

    A couple of weeks later I received my first official bladder cancer diagnosis; “Two malignant tumours, stage 1, grade 3, highly aggressive.”  My bladder was red and raw and I was to begin Mitomycin C chemotherapy treatments which would be instilled directly into my bladder by catheter beginning Monday the 14th for six weeks.

    The treatments are done by a nurse whose job it is to make you feel as if it is the most natural thing in the world to walk into a small room, drop your clothes to the floor, lie down on the bed naked from the waist down and allow her to do to you what you’d kill any other single person in the world for doing (at least in your imagination).  The first time it is quite embarrassing and astonishingly uncomfortable.  After that, all modesty is checked at the door. I found that some nurses are kind and methodical but others were in way too much of a rush.

    Whether one has treatments of Mitomycin C, BCG, Gemcitabine or something else, they are all hazardous and we patients, myself included, find it somewhat amusing but concerning, that the nurses basically don HAZMAT gear before administering the drug. Patients are not protected at all and have to keep the drug in their bladder for about two hours.  This goes against the law of nature because our bladders are meant to expel fluid not admit it. The nurse’s term of “urgency” is often “agony” for a lot of us trying to hold onto the precious yet dreaded drug that would hopefully help prevent any further recurrences and progression of the disease.

    I endured six TURBTs and thirty four treatments of Mitomycin C, Gemcitabine, and BCG all in a two and a half year period.  The cancer I had was aggressive and kept recurring but I managed to keep my head game on and persevere.

    Despite all these measures, by June 2010, it was discovered that the bladder cancer had become muscle invasive on the latest recurrence and I was now faced with the idea of undergoing a radical cystectomy (bladder removal) surgery.

    However, while undergoing yet another round of Mitomycin C in a last bid attempt to keep my bladder, I surfed on the Internet to start learning about muscle invasive bladder cancer.  I had to consider the fact that while my current course of action allowed me to keep my bladder but would it be enough to allow me to keep my life? During this search I came across the link for Bladder Cancer Canada, then known as CBCAN or Canadian Bladder Cancer Network.  I discovered that the site had a discussion forum and decided to sign up and post about my current situation.  I received several replies all telling me that with a diagnosis of muscle invasive bladder cancer, a radical cystectomy is usually the treatment of choice to ensure the best chance of survival.

    I did get into discussions with my doctors about possibly trying a combination of chemo and radiation as another last attempt to save my bladder but further tests revealed a thickening of the bladder wall in three different areas plus a swollen lymph node.  I was not considered a good candidate for this treatment option because of the condition of my bladder and the length of time I had already been undergoing treatment.  I had been at the muscle invasive stage for at least five months and my doctors wanted me to have the radical cystectomy surgery as soon as possible.  It was because of this urgency that I had to forgo neoadjuvant (pre-surgery) chemo that many patients are advised to consider doing prior to radical cystectomy surgery. After further discussion with my urologist I made the decision to have the surgery with a neobladder diversion.

    Some patients that are diagnosed with initial Stage 1 disease like myself opt for the radical cystectomy surgery right away so they don’t have to think about the risk of the disease possibly progressing to muscle invasive but I had decided along with my urologist to follow the more conservative course of treatment partially due to my young age and other co-morbidities of Type 1 diabetes and coronary heart disease.

    I got the call on Monday December 13th, 2010 that the surgery was to be on Wednesday.  Just two days to get my head wrapped around the enormity of my decision and to do the physical preparation for the surgery.  Pre-op prep involves a cleansing of the colon since a section of the small intestine is used to create the “new” neobladder and the intestines must obviously be prepped for this.  I made arrangements with my office that I was taking a three month leave of absence effective Tuesday, the next day.  I called my parents and emailed lots of friends to let them know of the impending surgery.  People from my local church and around the world were praying for my successful surgery.

    Since it was close to Christmas, I was concerned about getting the gifts wrapped and under the tree prior to my surgery since I was not going to be able to lift and move about with any great ease for a while. This was accomplished with some trepidation and humour since I was undergoing the colon cleanse at the same time.

    It felt quite surreal to be going into hospital to have a surgery from which you would feel lousy post op and yet be made well. People prayed. God oversaw. The doctor performed. Liz waited. And I slept while the professionals at Sunnybrook completely modified my pelvic contents and changed the functional operation of several organs…  “I will give thanks to Thee, for I am fearfully and wonderfully made” (Psalm 139:14). Some of us are more fearfully made than others it appears, especially following this surgery.

    The first few days post op were not only challenging in terms of getting moving again accompanied with all the tubes and wires but the fact that I was in a shared room and had a roommate that was in considerable post op pain and kept everyone awake with his moaning and ringing for the nurse.  I was thankful I had the necessary medical insurance that allowed me to transfer to a private room when one became available and I was able to get some much needed rest. I also realized that this was the exact same room that I had occupied nine years previously when I had my bypass surgery.  That ward had been a cardiac unit at the time.

    On Day 4 my morphine pump was switched out for oral pain meds.  I tried to resist meds as much as possible in order to get my head clear and found that ordinary Tylenol kept the pain to a manageable level.  I found it somewhat amusing that the nurses used the word “discomfort” rather than pain.  What would one expect in a patient that had 26 belly staples and seven different tubes coming from different orifices of his body?

    During my hospital stay I learned to flush and irrigate the tubes that were in my body.  There would be a few remaining in me when I went home so the hospital staff wanted to make sure that I knew what I was doing prior to discharge.

    I knew that I would have to have a Foley catheter in for several weeks until my surgeon was sure that my neobladder was healing and not leaking. I was also aware since I had a neobladder it may become necessary to learn to self- catheterize.  I attempted a joke about becoming so skilled at this task that I would go for the Olympic record.  “Greg Neely gets gold in the “decatheter” with a new world record time.”

    I eased myself back onto solids foods and because of my efforts didn’t experience any disastrous effects.

    I finally went home on December 22nd with the instructions from my surgeon to enjoy Christmas but not to drink too much alcohol. The first thing I did was sink into a chair, hug my dog and go to sleep. I was scarred from throat to pelvis, thirty pounds lighter, emaciated, unable to eat much, and weaker than water.

    For the first month or so at home, I needed to wake up at 3AM to irrigate catheters. I also leaked and experienced sauna like night sweats and bone jarring chills necessitating frequent changes of clothing and bedding. Because of this I slept on a single bed. I wanted Liz to get enough sleep so that she could continue to work at her part time job as a life guard and swim instructor.

    I had to deal with bladder incontinence for quite some time until I learned how to control the neobladder.  Night time continence would continue to be an issue so I learned to get used to wearing incontinence products or “diapers” as people call them.  Constipation was a concern in the early weeks as well.

    How did I get through it?  I turned to my faith once again.  In 2 Corinthians 12, the apostle Paul speaks of the “thorn in the flesh” and God’s reply to Paul was, “My grace is sufficient for you…”  These verses buoyed my spirit when the chips were down and I knew despite all that had happened and what I had lost I would gain back in other ways.  I had a lot to do yet.

    I had been part of the Bladder Cancer Canada online discussion forum for a while now and was excited to learn that the organization would be holding its first in patient meeting on May 28th, 2011 in Toronto. Liz and I attended.  I had been asked to give a short talk on what effects bladder cancer had had on me as a patient.  I decided to do something more inspirational in my talk rather than just recounting the facts.  My speech was well received and it wasn’t long before I was asked to join the Board of Directors with Bladder Cancer Canada.  I also spent considerable time travelling across Canada speaking at other patient meetings hosted by Bladder Cancer Canada.  I became a patient support volunteer; someone that a person could call and ask questions about their experience with the disease. I visited people in their homes or in the hospital.  I also spent many hours fundraising for Bladder Cancer Canada’s annual walk.

    I did a lot of writing and was successful in having articles published in several cancer publications.  My story was written up in the newspaper and I had been interviewed on TV.  I found my experiences extremely rewarding, knowing that I was helping others. I discovered that my work and purpose followed a scriptural reference, “Thy word is a lamp to my feet and a light to my path” (Psalm 119:105)

    Did I fear another recurrence?  When asked, I admitted to thinking of it but not anticipating it.  Stats do show that if a recurrence happens after a radical cystectomy that is not a good sign.  It means that the bladder cancer has most likely metastasized potentially going to the bones, liver and lungs.  I kept my personal fears at bay by participating in the Bladder Cancer Canada discussion forum and relying on the prayers from my faith community.

    I held my own until the summer of 2011 when I started to have dizzy spells and bouts of feeling very light headed.  I had several tests done.  Doctors checked out my heart because the symptoms I experienced were similar to when I first had my heart attack.  My heart checked out fine but my bloodwork indicated that I was anemic.   It was suspected that I could have internal bleeding somewhere.  Doctors were concerned that I might have colon or a blood cancer.  I eventually underwent not only a colonoscopy but a gastroscopy as well.  Biopsies were taken.  Test results showed that there wasn’t any cancer which was the good news but that I had celiac disease.  This was another autoimmune disease to contend with.  However, I breathed a sigh of relief.  It would mean some dietary restrictions but not surgery or more medications.

    The dietary restrictions proved more challenging than I first thought.  I had to remove all sources of gluten from my diet and be cautious of cross contamination.  This made it necessary to purchase my own toaster and spreads.  Eating out proved challenging because of the risk of cross contamination.  I not only found the taste of gluten free bread and other gluten free foods disagreeable but the cost as well. I discovered that gluten free foods generally cost a bit more than twice that of regular food.

    All was well for a while until tumours were discovered in my urethra at one of my check-ups in November 2013. It was necessary to have surgery to remove the tumours and have them biopsied. The results showed that it was necessary for me to have a second surgery not only to remove my urethra but my neobladder as well and switch to an ileal conduit (outside pouch).
    It was not the news for which we had hoped and prayed, but as one with a firm faith in the Lord, I rest in His purposes. Unquestionably, I would choose a different path. But my vision is so very short-sighted.
    My urethrectomy surgery, including removing my three year old neo and constructing an ileal conduit was scheduled for Tuesday and was again quite invasive as you could imagine. I saw the surgeon prior to Tuesday to ask questions and get the low down on what he planned to do. He indicated that he might be able to use some of the neo if there was no cancer there and then he would not need to re-purpose additional lengths of small intestine. He wouldn’t know that until he explored this new world once again. Clearly if there was even a hint of cancer he would not use any neo. I’m not sure if he used any additional intestine and whether shortening it would remove any wrinkles around my eyes from the tightening. I’ve always had a bass voice, but maybe tenor is in the future.  I would not be posting any photos.
    Next Tuesday I was sucking oxygen and drifting off to sleep. I awoke hours later to a different reality. I looked forward to the opportunities it provided me—though I must admit I would have probably chosen a different route. Still, knowing what I know about opportunities that having bladder cancer can provide, I expected that there would be plenty of humor to share, emotion to shape, thankfulness to enjoy, faith to deepen and joy to once again experience.
    On Thursday, two days post op I managed some strawberry jelly and a lukewarm cup of tea for breakfast.  I walked around the nurses’ station hanging onto my IV pole and sat rather uncomfortably in a chair. All in all, it was a pretty good day so far.  Yesterday, it was not so much…but that was yesterday and was to be expected. I unfortunately had to share a 3 person room. One guy had a sleep apnea problem that rivaled anything I had ever heard and we heard him all night which meant sleep was fleeting. My other roomy was terrific with sense of humor not unlike my own. It hurt to laugh, but it’s worse if you can’t.
    A few days later I was told that I was heading home the next day. There was too much frivolity in this room and they needed the surgical oncology ward to be more somber. Plus so far I seemed to be doing quite well. I was up and walking a lot today and eating some little portions of the food developed for diabetic, celiac patients who are weaning their way off clear liquids. When they offered home as an option I jumped at the chance. OK I did not jump – not doing THAT well. But I was blessed and very thankful.”

    After my surgery I found out that I needed to do radiation treatments.  I was all aglow with anticipation!  I met with the radiologist oncologist on Thursday. I was to have 25 radiation treatments, five days a week for five weeks. Before the treatments started, I would have the simulation done. That’s where they position the body exactly and map out the exact places on which they want the main radiation to focus. They also gave me my first permanent tattoos (little dots) so that positioning each time could be done quickly and exactly. I asked for butterflies, but they said I can join up the dots after the treatments were over. I just figured I’d save some time and money if they did it. I needed a full scan first to ensure there were no rogue cells taking up residence elsewhere, but that was not anticipated at that point. After that I went off to British Columbia for ten days with my wife. I came home to treatments in May/June.

    That particular regimen of treatment was not common, but almost nothing about my BC has been common. The issue was that the area of invasive cancer that was removed drains into the groin lymph nodes. Since I had so many pelvic lymph nodes removed during the first RC (15) they did not want to remove the groin lymph nodes. I would swell up like a blimp and have to be tied to the ground.  I would save on airfare, but it would make driving a real challenge. Anyway, the radiation would blast the lymph nodes in the groin.

    They asked me if I had kids because I would not be able to have them after this is over. I assured them that I was minus the appropriate parts to father children at this point so there was no concern there. They also mentioned that a couple of the side effects would be burning when I void and frequency. Once again I pointed out that neither of those two things would be possible given my current anatomical composition (with an IC and no urethra). Sorry, but I was not posting photos on Facebook!”
    The trip to BC was awesome. We even got to Tofino and stayed a night in the famed Wickaninnish Inn. I may have to sell my car to pay for it.

    I had my first radiation treatment. It was quick and painless. I understood much like BCG, the effects are cumulative and after the first couple of weeks any side-effects may manifest themselves. Not everyone gets them all, but they include fatigue, skin irritation (burn), and loose stools due to the bowel lining being irritated by the radiation. As far as I know I would not grow a third arm or have a radiant glow exiting my pant legs!
    It was “interesting” to be tattooed on my hips and abdomen (4 little dots to line up the beam) and then lie naked and exposed and have the therapists drawing additional lines and dots with a Sharpie. At this point in my six-year journey with this disease, it all seemed quite normal, really.

    I didn’t have therapy on Thursday this past week because the machine needed to be serviced. They assured me it was routine maintenance. If I did happen to grow a third arm, however, you would know that it was not routine at all. Oh, and I may be able to see through clothing… Tomorrow was the last of 25 radiation treatments. I was glad. The actual treatment was completely painless (like getting an x-ray is painless) but the resulting skin damage which appeared after about two weeks was somewhat irritating, burning, red, raw, peeling, like an abrasion, but on that part of your anatomy abrasions should not ever occur!!! However, for anyone who has had an RC, this was a piece of cake. A piece of cake, that is, that the candles have gotten too close to. Bring on the Polysporin!

    I was followed up with a CT scan and it showed a couple of nodules where there should not be nodules. So I am to have an MRI as soon as possible to try to identify if these were harmless or if they are recurring disease. Hopefully the MRI would give the docs confidence in moving ahead if further treatment or surgery is indicated.
    Are we having fun yet? Well, things that don’t kill us outright make us stronger. And there is usually something I find to smile about, even in grim situations, so I am doing well. As I look around the radiation department at the cancer clinic, I realize I am the healthiest guy there. My faith is strong, my support team is outstanding, and my friends at Bladder Cancer Canada remain a source of encouragement and delight.
    The burning and blistering was still active two weeks post radiation. That probably will start to subside. My MRI was booked for Monday, June 30 at 4:15.  If you wanted to, you could have come and watched. I would have asked them to provide drinks and popcorn. As mentioned, they’re investigating two “suspicious” nodules where there ought not to be nodules of any kind.
    I guessed that was what makes them suspicious – sort of like two suspicious individuals in your backyard at 2 a.m. They were suspicious because they should not be there. I know Ki (one of my BCC friends) would have just shot them. But I was content to have an MRI and see if there was a more peaceful resolution to my particular issue.
    In the meantime, I had booked eleven days in the mountains of Colorado telling stories at campfire to a great bunch of kids at camp. I wanted to forget about bladder cancer for a while and enjoy the splendor of God’s creation at 10,000 feet. The oxygen was rare, but the scenery was even rarer! Fantastic! If you would be near the Spanish Peaks in Colorado in July, I would be close by.
    Well, the MRI results were now known. It was not what we had hoped, but better than it might have been. The cancer had metastasized into the peritoneum and surgery to remove the tumours was not an option. Chemotherapy was to commence presently. I sought a second opinion at a pre-eminent cancer centre in Toronto, not because I questioned my own excellent doctor and cancer centre, but because this was my life and it seemed prudent to pull out all the stops. Once again, David and Jack were in my corner encouraging, supporting, educating and proving the very essence of Bladder Cancer Canada’s existence!

    Liz and I were not despondent or depressed, nor particularly anxious or panicked. Our faith sustained us in times like these (otherwise it is not faith at all). Our families were entirely supportive. Our friends were very concerned, but stood with us. Our sense of humour remained – warped, but we delighted in seeing the humour in even such potentially dire circumstances. I told my son that if he buys me electronics for Christmas, he does not need to buy the extended warranty. See what I mean.

    We have the second opinion appointment tomorrow at Toronto General Hospital, which is associated with Princess Margaret Hospital under the University Hospital Network. Wait times? Who said anything about wait times? Not with David and Jack on the case for Bladder Cancer Canada.

    The second opinion confirmed the first, that surgery was not an option, radiation was not appropriate and chemo was the next course of action to try to control the disease. In the meantime, I felt good, looked outstanding (!!!) and was prepared to live each day until I couldn’t. That’s what all of us are doing – right? I saw the medical oncologist on August 18 to start the chemo planning and from there would look forward to its conclusion with great anticipation.
    In the meantime, I had to plan for another week of kids’ camp on August 10 where I am the storyteller at the nighttime campfire. Something I have been doing for decades and I love it. Hopefully the kids will too…
    I saw my medical oncologist yesterday. I am to have a bone scan and CT scan in early September to get a baseline prior to chemo which will start on September 16. Like many dealing with bladder cancer, it will be Cysplatin and Gemcitabine. Day 1 will be both, day 8 will be Gemcitabine only and then the third week a recovery week. There will be four cycles and then re-evaluate next steps. This is “palliative”, not curative, though there are certainly occasions when palliative becomes curative. I’ll leave that up to the giver of life and that will resolve a lot of anxiety which might otherwise invade my enjoyment of today. I say to all that have supported me, “Thank you for your prayers and your kind words.”
    I had a bone scan and it was clear. I don’t mean I am without a spine, I mean there are no lesions on or in the bones. That was good news.
    The CT scan was less positive. The cancer had now metastasized to both lungs.  There was a nodule behind the liver (not in it, but it would be better to not have it at all), and there were more tumours in the sacral/rectal area. It was these that were causing me pain for which I have increased the medication slightly.
    Today September 16th was chemo number 1 – four sessions where week one is both CIS/Gem, week two is just Gemcitabine and week three is a week off to recover the blood counts. I will get a PICC line next week to save my veins from the burning of the Gemcitabine and to ensure that when I drink water, I do not leak out my arms!!
    It was a long day today, but the result is a whole host of pills to take to prevent or control nausea and to drink like a sailor (non-alcoholic beverages and those without caffeine) by the gallon. This was when I was glad to have traded my neo for an IC, even though done under duress. It did involve many, many trips to the washroom during the day however because with chemo the nurses hydrate you rather profusely. Guess what filled up rather quickly? Bingo. Next week I may take a 75 foot hose and just hook it up to the toilet from my recliner and hope no one decides the plants need watering in the hallway – or worse, a workman gets thirsty, sees the hose and…well, you get the picture.
    So tonight I’m very tired and sleepy but very grateful to live in a country and a city where top-notch medical teams give their very best to treat the patient and not just the disease.  I’m also very grateful to have bladder cancer friends who do the same. Tomorrow is a new day.
    Interestingly enough, the pain subsided, perhaps temporarily, after the chemo. Not sure if it is the drugs, the hydration or what, but I am quite comfortable today. Long may it continue.  I am just tired and sleepy as I was told I would be. The anti-nausea drugs seem quite effective so far. My appetite is gone, but my wife is persistent and as a diabetic I am eating to keep up my strength. The steroids cause my blood sugar to soar. Thankfully I have an insulin pump and can take extra insulin at will.
    Our Awareness Walk is Sunday in Toronto. I am planning on being there and supporting the troops. We hope for about 500 attendees this year if the weather cooperates. I am a little bit under the weather. In reality we are all under the weather if you think about it. As long as we are above the grass then it’s a good day.
    Well, after my first chemo session, which was better than I expected (Cis/Gem) and no nausea, I developed an infection which put me in hospital for four days on IV antibiotics. I went in the day after our walk at which I felt absolutely horrible – and looked it too (even more than usual!). So I missed my second Gemcitabine dose and last week was my recovery week. My white blood counts have been low so we’ll see what the med/onc decides to do with me this week. I hope I can go ahead with round two, not that I like the fatigue, but I want to be moving forward with this treatment to combat the enemy within that is trying to kill me. At the minimum, we need to teach it a lesson or two. Conversely, it is teaching me some lessons too, so there is good in everything if we look hard enough for it. I am now down below my marrying weight of 33 years ago and if I still had that baby blue suit that my kids laugh at, I’d try it on.
    It is now November. The results of recent CT scan show that while two tumours actually increased in size, the majority have shrunk. My final round of chemo in the present series starts tomorrow for two Tuesdays. Then I have a break until a follow-up CT scan towards the end of January. I may then qualify for a randomized phase 2 clinical trial where I may be in either the control group and receive chemo or I may be in the experimental group and receive the new drug. Each has pros and cons, but the idea is quality of life and extended life. I like both options – quality and extension. The more birthdays I can have the better. So while it is kind of a mixed review, it is of more good, than not so good and for that I am thankful. God is so good!
    I just finished my last chemo session for this series. Now for two months of forgetting about it for a while. It is time to figure out what everyone wants for Christmas. This year especially makes me appreciate that it’s not what you can give or get so much (though I love the giving part – and the getting too if I’m honest), but it is being here to enjoy family, friends, faith and festive joy. The toys just give you joys and fleeting enjoyment. The other things give so much more that they cannot be measured either in time or value.
    2014 has been a year of two surgeries (one relatively minor – TURBT; and one major – second RC), 25 radiation treatments, four rounds of chemo and a diagnosis of incurable disease. In spite of that, it’s been a really good year – my older son got married to a lovely lady, and my younger son got hired by the OHL as a linesman. Both got full-time jobs. I officiated at four weddings.  My wife Liz and I travelled to BC, Colorado and Las Vegas. Friends from countries all over the world have written and phoned with support and assurances of prayer. I have been blessed with more than most in the world, I expect. And for that I am very grateful. For my friends at BCC, you provide great encouragement. Let’s make 2015 even better!
    It is now February 2015 and the CT scan shows that the tumours in my lungs are growing but minimally and the doctor feels all but one is insignificant – easy for her to say!
    The concerning tumour is the one in the area where I sit (to be polite).  It is growing and is about the size of a golf ball. So the thinking is to radiate that one tumour to try to shrink it. Depending on the success of that, it is suggested I then get involved in a clinical trial out of Princess Margaret Hospital where two drugs, both with efficacy, are being compared to see which is more easily tolerated . It is not the Roche study which closed pretty quickly, but seems to be a worthwhile venture. The chemo is given every three weeks for as long as it is having good effect.
    My pain meds have been increased and if I sound like I am confused, I am!  This is the story of my life. Maybe the meds will help. All in all, it could have been a lot worse and we are grateful that there is a path forward that seems well thought out and potentially beneficial.
    Life got even more interesting in late April. I spent a couple of days in hospital having spiked a fever two days after chemo (Taxol). I received two units of blood as well. Tumors are now in the liver. I am on Taxol for as long as it helps and does not become unbearable. I will be speaking with social worker over next few days to get a good picture about the future. I’m not sure how much of the future remains for me, but I am confident in God, my docs, my family and friends. It was great to be at home today and not in an isolated hospital room, used for freezing meat most of the time as far as I could tell!
    I have been less than healthy the past few weeks, but I finally have decent pain management. It makes a huge difference though that narcotic haze is really not my preference.
    Keep on keeping on, folks. Life is full of challenges, but also full of wonderful joys. Let’s not overlook the joys.
    I am experiencing some challenges currently. Who isn’t? This chemo seems to have been somewhat taxing, but maybe there were other things at work under the surface as well. And everything is taxing in this country. I get an additional week and a half off until the next Taxol. One Monday on, two off, one on, two off – and so on until the doc says enough, or I do. Great weight loss program; I weighed in at 148 lb today. I have little appetite. I push what I can. I do not want my wife to kill me for not eating.
    Well, my hair started coming out in handfuls this morning from the chemo received a couple of weeks ago. It started looking patchy so I had Liz cut it down to what used to be called a brush cut. It will continue to come out, and my head will be shiny and round. It really isn’t square!
    I was put on chemo again in May and had three sessions. I was in hospital twice with infections. Then just over two weeks ago my abdomen started to swell and got really, really painful until finally I was admitted to Sunnybrook. As the abdomen swelled the pressure was intense and my incision from my RC surgery split open about three inches. Out came all sorts of things – a pair of old socks, a hat, plus a lot of stool. The pressure was instantly relieved and the pain gone, but now I have a three inch wound in my abdomen that will not heal and cannot be surgically repaired. I am now wearing an ostomy bag in the middle of my pelvis and it is acting as a bowel. Lots of leaks to date but we are working on a solution. It’s a messy affair. Who knew you could live with such an open wound.
    It is now June. No more chemo for me as it was no longer working. Now it is a question of controlling pain – I am on a pain pump full time and it seems to be effective. I am walking with a walker for the moment until I build up my strength a little. I am spending a lot of time in bed. The goal now is get strong again and to live each day productively and enjoyably. So far so good! Heaven is in my future, but not for a while yet I hope. I’ve got a good appetite and am catching up on some meaningless TV shows. All things considered life is good today – and today is all we really have.

     

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