My Ongoing Battle with Pseudomyxoma Peritonei (PMP)

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Introduction

So, I haven’t told a lot of people about this. Truly, it has taken me a year to learn what I know now, and my journey isn’t finished yet.

I am writing this now to tell my story, in hopes that it will help others in similar circumstances to me – either medically or professionally – should something like this happen to them.

Bear in mind that these are simply my own personal experiences. If you’re going through something like this, your experiences WILL be different. Trust your doctors and your nurses and take this all with a grain of salt.

I live in Oshawa, Ontario, Canada. I am 40, a parent of 3 wonderful girls (ages 12, 14 and 18), happily married almost 17 years, and an entrepreneur. Needless to say, until all this began I already thought my life was challenging.

The Start

In January 2008, an emergency appendectomy alerted my family and I that I had (as I later learned) Pseudomyxoma Peritonei or PMP. PMP is a rare cancer (literally one in a million) that for me started as a tumour in my appendix (an adenocarcinoma), which grew and ruptured it, spilling mucous and mucous producing cells into my abdomen. I had no idea that week in the hospital that I was beginning a journey that would last at least the next year and a half.

The surgeon at Oshawa General Hospital who did the appendectomy was unfamiliar with the condition, and his uncertainty alarmed us a little. He did however find and refer us to a specialist (Hepatobiliary, Pancreatic and Gastrointestinal Surgical Oncology) at Sunnybrook in Toronto. The specialist was wonderful to talk to – a doctor who not only knew of my condition, but was tracking and treating other patients with similar circumstances. This was a great relief after talking to the doctor in Oshawa who really didn’t know what to tell us.

The specialist advised us that we needed to act within a couple years, but that we should take 6 months or so and determine more precisely what was going on in my abdomen. He advised us in April that there were a couple possible courses of action (wait and see vs. aggressive surgery), and then in September that he felt that I was a good candidate for the “Sugarbaker Procedure” (an aggressive and complex surgical procedure, with several stages, and many possible outcomes). The basis of this was that I was young, in excellent health otherwise, and I wanted to aggressively pursue the cancer so that there was as little chance of recurrence as possible.

I mentioned I am an entrepreneur. In January 2002 I started Three Wise Men – a software development company based in Oshawa. While I’d grown the company fairly steadily over 6 years, our staff remained fairly small. The news in April 2008 that I might have to take 3-6 months away from the company for surgery and recovery seemed almost impossible.

The Preparation

Needless to say, my 2008 was spent not only continuing to grow my business, but figuring out how it would run without me. The year saw some real ups and downs in my mood. I even considered shutting the business down at several points, thinking that it was an impossible task. In the end, some renewed drive led me to rediscover why I started the business in the first place. I couldn’t let it fail. I owe this renewal to some key friends and mentors I’d come to know well since I started the company – all entrepreneurs should remember that they don’t need to be an island, and either starting or joining a good business “mastermind” group is an incredible help dealing with business challenges, large and small.

My ultimate solution was focusing on systemizing and documenting my business. I joined a formal business coaching program geared towards owner-managed businesses which helped organize my thoughts, and I leapt ahead writing down and organizing everything about the business I could think of. I hired someone to help with sales and business development, and my most trusted co-worker (I can’t bear to call him an an employee, he’s an integral part of the business, a natural if somewhat reluctant leader and is entrepreneurial himself) rose to officially manage all production operations. I also offered official part-time positions to two of my key contractors who I’d also rather be more involved in the company.

In October, the specialist at Sunnybrook declared that he would be unable to do the procedure at his hospital, but had arranged several of his patients already to have the procedure done at the Victoria General / QEII Hospital in Halifax. We agreed, and scheduled an appointment in Halifax with the surgeon there to discuss the procedure. Turns out the procedure is only currently available in Canada from Halifax and Calgary.

We didn’t know how long it was going to be between the consult and the surgery, so we travelled to Halifax at the end of November on a 1-way ticket with no idea when we’d be home.

I have to give special thanks here to Francis, the wonderful woman who put us up while we stayed in Halifax. She is the cousin of my wife’s Mom’s friend and lives just north of Halifax proper in Lower Sackville. Turns out Halifax has an excellent transit system and the bus ride from Lower Sackville to the hospital was only about 45 minutes during the week. Francis was a warm and welcoming host, and life would have been so much more complicated without her.

As great as the doctor at Sunnybrook was to speak to, the doctor at Victoria General was even more reassuring. He spoke in great detail (and drew pictures!) about what I should expect. We didn’t know specifically how far the disease had progressed so there were many possible outcomes. He discussed the complexity of the surgery, all of the different decisions he might have to make on-the-spot during the procedure, how long it might take me to recover, and what the impact would be on my quality of life afterwards. We decided to move forward despite the risks (there’s always risk with any complex surgery, and this one takes the cake).

The surgery was scheduled for the end of January, so we returned home for Christmas to spend time with the family.

Thankfully, my preparation on the business had gone well and the office was running cleanly without me, so during December and January I spent little time there. I got a little bored in January (hey, what can I say, I’m a geek!) and I took on some programming work to help the guys out. I was happy to have the mental distraction.

Oh, and I should probably mention I’m a hardcore gadget geek. For example, I have our DVD collection at home archived to a USB hard drive I keep attached to our Sony Playstation 3 so that we can leave the DVDs in the basement and watch what we want on TV without running around looking for them (or having them get left laying around and get scratched or eaten by the dog).

Knowing I’d be spending weeks in the hospital, I transcoded our movie collection to a lower quality so they’d take up less room on my iPod Touch and I could fit more movies and shows onto it. I also picked up some extra TV series on DVD (the only way to watch TV!). The plan was to have my wife sync my iPod with my laptop, which would replace shows that I’d watched in the hospital with new material every few days. Happily even Season 4 of Battlestar Galactica was released a few days before I had to fly out for surgery.

Surgery

The word was, I should expect to be staying 3-5 weeks in the hospital so we booked another 1-way flight to Halifax on January 24, 2009.

When I was admitted to the hospital I was put on “contact measures”, a sort of quarantine because I’d been at Oshawa General Hospital for more than 24 hours within the previous year. This actually worked out for us, as I got a private room for the night before surgery. The staff were wonderful, and arranged a cot so my wife could stay with me in the room, and even found a way to get me some free TV for the night. We met several of the doctors through the day who would be involved in the surgery, each giving us the opportunity to ask questions and tell us about each of their roles.

As part of the surgery involved my bowel, I did have to drink another 4L of the bowel prep liquid that evening. Not my favourite stuff, and it took me until almost 8pm to finish it so I had a bit of a restless night with lots of diarrhea.

The morning of the surgery, I had a shower and was ready to go when they came in and got me around 7am. There was a little more time spent in the surgery waiting area, but before I knew it I was being wheeled into the operating room. I slipped onto the narrow surgical table and put my arms onto the special rests, and was put to sleep.

My parents and sisters arrived at the hospital while I was in surgery, and waited with my wife in a special waiting room. We were told the surgery would take between 10 and 20 hours, and it turns out I took 17 hours total. The main surgeon and his assistant were present the entire 17 hours, while other specialists came and went for each their own portions of the procedure. It was a bit of a grueling wait for my wife and family but the staff kept them up to date on the progress as best they could.

Basically here’s what they did (in no particular order):

  • removed my right colon and some lymph nodes around it, thankfully my left colon was fairly lengthy and clear of disease so I got to keep it
  • fashioned a new pouch at the end of my small intestine and attached it to the remainder of my colon
  • removed my greater and lesser omentums (the fat on the inside of your belly)
  • removed my entire peritoneal lining (protective lining around the inside of your abdomen)
  • removed my spleen
  • removed my gallbladder
  • removed a thin outer layer from my liver
  • filled my abdominal cavity with chemo fluid and “stirred” me for 2 hours (no idea what that means!)
  • created a temporary ileostomy so that my bowel has a chance to heal (plan to reverse at 6 months)
  • the incision took 59 staples to close, with 2 more sets of 3 covering incisions on my right abdomen
  • They put 2 Jackson-Pratt drains out my left abdomen for drainage

I was quite lucky. I was able to keep a great deal of my colon, which means I will have normal bowel function after my ileostomy is reversed. And, the tissues removed and sent for biopsy came back normal or with only “nonviable” cells. It was as the doctors suspected during our consults, the amount and progress of my disease was certainly on the “good” end of the spectrum.

My family says when they saw me after surgery, I was very swollen. I was also quite a sight with all the various tubes and IVs sticking out of me. For IVs I had a line in each hand, and a central line in my neck with several feeds. I also had a catheter with a bag, an NG tube down my nose with a pump to drain my stomach into another bag, the two Jackson-Pratt drains on my left side, my ileostomy on my right side, and oxygen to my nose.

The next 3-5 days were a complete blur. While I know I spent 3 days in the ICU (Intensive Care Unit), and another 3 days in a “step-down” unit (1/2 way between Intensive Care and a regular ward) before I eventually hit the regular ward I only recall a few certain events.

One was on the day after surgery. I was awoken by two male nurses who asked me how my pain was (horrible!). Then, they said it was important for me to move around – so they were going to keep giving me painkillers until my pain was gone. I thought, “Yeah right” but they did it. After several shots my pain was somewhere else, and I stood – mostly on my own even. Not only amazing after that surgery, but amazing given that I was so high on the painkillers that whenever I closed my eyes I got lost in the most amazing hallucinations. They had me sit in a chair, where I got to see my sisters and my parents and my wife for the first memorable time after surgery.

The hallucinations were crazy, and went on for days. Visually, they seemed to only manifest when I closed my eyes, but they were auditory as well – and they happened all the time. It was kind of funny, I thought my IV pumps and those from other patients were talking to each other and to me. I don’t think my eyes focused both in the same place for the entire time.

They set me up in the ICU with an Incentive Spirometer (mine didn’t look like the one in the linked picture) – a device through which you inhale trying to move enough air to raise a little ball for a few seconds at a time. It’s amazing how much your lung capacity is reduced. These first few days I couldn’t do anything with it.

Recovery

When they moved me from the ICU to the step-down unit, they had to change the central IV line in my neck (something about incompatible with equipment in the step-down units and the wards). It didn’t hurt, but it was a little freaky as I lay there under just a local anesthetic feeling them poke around at my neck and stitch the new apparatus down. They also switched me from manual as-requested injections of the “Diloted” painkiller to morphine via a PCA pump. With the PCA pump, you get your own button you can press for an immediate small dose of painkiller, and it’s regulated to only allow you to fire it so often. The best thing about it is that it was through my IV so I got a break from the painful injections – they left my arms sore and bruised.

I didn’t know what my specific PCA restrictions were, and while I was awake and could see a clock I’d tend to click it every 10-15 minutes. It was a bit strange at night though – I couldn’t see a clock, and they just said to click it when I felt pain, which was pretty much all the time. At least one night I know I used a ton of it without realizing and the IV pumps around me seemed especially chatty.

Once in the step-down unit, I became more aware of what was going on around me. I became more aware of my wife at my side every day, mostly reading or stitching as I slept. We didn’t interact much, but it was a great comfort nonetheless to have her near. I started doing some regular things like brushing my teeth, and washing a little. Moving around was still a huge ordeal because I still had all 9 of my hoses and tubes sticking out of me, along with 2 IV poles full of pumps. I was being given TPN (2 bags, one a yellow fluid and the other a white milky fluid for nutrition), heparin, morphine via the PCA, and a variety of other medications on a periodic basis. They took the pump off my NG tube so my stomach just drained on its own.

I got better with my Spirometer, got up to 1/2 strength. I did not yet understand how critical this activity would become for me and didn’t practice it as much as I should have.

About a week after surgery, I was finally stable enough to be moved to a regular nurses ward, and within a couple more days things really started happening.

First, they took me off my PCA machine. I was sorry to see it go, but was happy that I could manage with less painkillers which meant I was more and more aware of what was going on around me. For the first time since before surgery I could start to focus both my eyes in the same place.

Within a couple more days (around day 10), they began removing tubes. At one point I found it more comfortable with my NG tube plugged (the one to my stomach), and they decided it was time to come out. They took it out and my catheter at the same time both of which were painless. Shortly after they took the two Jackson-Pratt drains from my left side (the tubes into my abdomen were very long and quite uncomfortable when pulled out). They even took out my central line – which was uncomfortable, but not painful. They took me off the TPN and put me on a basic fluids IV.

With my improved ability to focus and concentrate now I was very thankful for my prep work and planning with my iPod. It was a great help to pass the time watching some familiar and favourite movies and catching up on my favourite TV shows. Turns out that spending over $12 / day for 30 days on the hospital TV by the bed would have cost me almost as much as my iPod Touch.

Around day 11 I ran into a bit of trouble, and I blame not spending enough time with the spirometer and practicing my coughing. My lung capacity was so much reduced I simply couldn’t clear a tickle from my throat. It shouldn’t have been a problem, but I spend a couple nights where the tickle made me try and cough, but I couldn’t effectively do it and eventually started gagging which then turned into vomiting. I was still not quite mentally there so I didn’t fully realize at the time what was going on, plus my abdomen felt so different I couldn’t sort out what was nausea, hunger, pain from my incision, or pain inside. So when this occurred the nurses didn’t quite know what to make of it and I ended up on an anti-nauseant, which in hindsight wasn’t really what I needed.

The nurses thought that maybe the NG tube was taken out too soon, I didn’t really know at the time what to think. The doctors weren’t convinced however because I had stated that I did feel better with it plugged. I think the doctors were right and I do fully blame not doing more lung exercises and better preparing myself for such a simple thing like a tickle in my throat.

Also around day 11 they started me on clear fluids – jello, apple juice, cranberry juice, chicken broth, tea. I savoured my jello like the finest steak. For the first several days I stuck to very small then increasing amounts of the juices and jello, then started to venture to the broth. The broth scared me a little because it had bits in it (wasn’t perfectly strained) and they tickled my throat sometimes. Around day 17 they upgraded me to full fluids, which got me milk, oatmeal and cream soups. Then on day 18 I was upgraded to soft foods, which got me dry cereal, an apple muffin, cheese, shepherds pie and stews, and dinners like mashed potatoes, green beans or squash and roast beef or pork or broiled chicken or fish.

On day 14 the physiotherapy nurse started coming around regularly and I started walking and sitting more regularly. I started on a walker and after a couple days was walking on my own. I was working my way up to 3 walks a day up and down the hall. At this time I was only occasionally on an IV so I really appreciated the freedom being able to walk unencumbered.

The ET nurse came by and I got my first training on my ostomy. She explained everything about it and changed the pouch for me, and said there would be a few more visits where I would eventually be changing it myself. From this point on I was expected to empty it myself, which meant getting up to the bathroom, measuring its output, and marking it on my chart. It seems such a simple thing, getting up and going to the bathroom on your own, but I hadn’t done it in over 2 weeks. I had to get used to getting up when my body needed me to rather than just when I felt like it.

Since I wasn’t on any IV nutrition, I think they wanted to get me onto actual food as quick as my body would let them. And it worked, during my third week in the hospital I started to gain strength.

Until my next issue cropped up that is – which was spiking potassium levels. This was probably the most frustrating thing for me, mostly because of the way they handled it. I don’t know that there was any other way they could have, but it was frustrating nonetheless.

Normal potassium levels in your blood are something like 3.6 to 5.1 (this varies a little in the medical community I think). Mine was spiking between 5.3 and 6.0. Apparently if it gets to 7, you start to get some arrhythmia in your heart (scary). The normal treatment was this absolutely horrible liquid drug called Kayexalate. It was very thick, chalky, brown, with that slight fake fruit flavour you get sometimes in medicine. The first time they brought it to me, the nurse was so apologetic and I knew I was in for a treat. I had just had my first stew (chicken and vegetable) for lunch. I tried the fluid and it was so thick I gagged on it and completely lost my lunch.

Every day my potassium came back high, and every day they brought me 1/2 a styrofoam cup of the kayexalate. My wife suggested a popsicle, and it turns out that was the trick for me finally getting it down, which was basically tiny sips with a popsicle in between.

Kayexalate works by binding to the extra potassium and then passing it through your bowel. For me this translated into constant diarrhea, which basically meant my ostomy was liquid all the time and needed constant emptying. I was up every few hours day and night to the bathroom, which was exhausting. I don’t think at this point I was getting the nutrition I needed from my food because everything just went straight through me. As a result the strength I had been gaining seemed to slip away from me, and I ended up spending more time in bed.

The doctors had been fairly happy with my progress and were making noises like I might be able to go home soon. We started to talk about flight plans, but didn’t tell the family. As it turns out, until that release is actually signed and you’re leaving the hospital, it’s tough to count on when you’re actually going home.

Blood clots are a concern when you’re lying around in a hospital bed all day. Since surgery, I was wearing TEDs (tight stockings to keep clots from forming in your legs), on 3 Heparin shots per day, plus Aspirin and Advil to thin my blood. They urged me constantly to get out of bed and walk around or even just sit in a chair for a while. My reduced strength meant I was able to do this less and less.

Despite the precautions, on day 18 I had a pulmonary embolism – a blood clot, in my right lower lung. In the morning, after breakfast I started to get a spasm in my back. It was very painful and caused my whole body to tense, and my breathing to become more shallow. I tried walking but didn’t make it to the door of the room before I had to turn back. After a call to the doctor they prescribed an IV muscle relaxant (Flexural) and it helped some. It calmed down through the morning and started to act up again around lunchtime.

Through the afternoon it got progressively worse. By 2:00 the pain was constant and I could barely breath and they put me on oxygen. One of the senior nurses had a hunch and put an extra IV in me in preparation for any medication they might need to give me. I was gasping and taking the tiniest breaths as fast as I could while then ran tests. I had an EKG and an X-Ray at the bed, and they wheeled me down to the 3rd floor for a CT scan. They quickly identified the clot and had me up to the ward and on a Heparin drip pronto on the extra IV line.

The muscle spasm confused things a little, I truly thought that’s all that was wrong with me. And I guess while it’s not common it can happen along with a clot. Thankfully I hadn’t gone home yet, and my nurse was totally on the ball.

For the next 2 days they took blood 3 times a day and adjusted the Heparin drip accordingly so that it could dissolve the clot. My back was still spasming and I still found it hard to breath but it got steadily better over the next couple days.

By day 22 my INR (blood clotting factor) was at therapeutic levels and they switched me to Warfarin pills.

My potassium was still spiking, though less often, and occasionally my body was able to process food properly. I was very frustrated being on the Kayexalate but the doctors couldn’t pinpoint what was causing my potassium to spike. Their theory was that due to my high white blood cell and platelet counts cells were dying off and spilling extra potassium into my blood. Tests on my kidneys came back normal. One of the doctors from Medicine tested a theory that the Advil I was on might be causing it so that was discontinued.

I was gaining strength again now that the Kayexalate was less frequent and my small bowel was starting to work better. My body was processing food better, and I had more energy and got back up to my 3 walks a day and spending as much time as I could out of bed.

I even went down to the cafeteria to sit with my wife while she had her lunch a few times. It was a longer trip than just walking down the hall, and was a nice change of scenery. By this time, 3 1/2 weeks in the hospital, I was starting to feel a little caged.

Around day 26 they decided to hammer me hard with Kayexalate and try to push my potassium levels down as far as they could. They gave me a full cup at a time for a couple days to try and do this, but it didn’t really reduce it that far. Luckily by this time I had worked out a trick, they seemed to bring me the Kayexalate right after my meals (breakfast / lunch), but instead of taking it right away I’d wait until a couple hours after I’d eaten. This let my body process the meal better and helped with my gaining energy.

On day 28 I got a day pass, and my wife and I walked down the street from the hospital to Smittys, a nice independent restaurant a bit like Golden Griddle. The walk was fairly long and my hips got a little sore, but I had a great lunch. I ordered off their Seniors menu and had bacon, an egg, and 1/2 waffle. I was starting to feel like a real person again.

On day 28 the doctors also started talking about going home again. I was feeling pretty good, and especially after my day trip I figured I was ready, but was also a bit nervous. My wife booked a flight on day 31 in the morning and we crossed our fingers.

On day 29 I saw my surgeon for the last time. We talked about my recovery, flying home, reviewed what to expect in the next few months. He reiterated that my recovery was very good, despite the setbacks.

Going Home

On day 30, I was released. It was a very busy day, I saw the ET nurse for the final ostomy training, I saw a doctor from Medicine for my warfarin training and to get my prescriptions and a few extra Warfarin pills to last me until we could get our prescriptions filled at home. I saw one of the doctors on my surgical team for a final checkup and a few more immunization shots, and we gathered all of my stuff together in preparation to leave. By lunchtime all was said and done, and after I had my last hospital meal we stopped at the nurses station and said our goodbyes.

We stayed that night at a hotel near the airport. There was free Internet access at the hotel and I was able to use Skype on my laptop to call family to save the hotel phone bill. Dinner was a bit of a challenge because none of their meals fully fit my dietary restrictions, and they didn’t have any Tylenol (I had no pain medication at all, in hindsight I should have asked for some Tylenol and maybe a Morphine pill for the trip home). The night was a little restless, the bed was flatter than I was used to, I had to change my ostomy appliance for the first time without assistance, and we had to get up at 3:45am Halifax time to catch the shuttle bus to get to the airport and catch our 6:30am flight.

The morning was long, up at 3:45, shuttle at 4:30 to the airport (bumpy bus ride, it was very uncomfortable). I got a wheelchair at the airport, and we were settled at the gate at 5:00am. None of the airport shops were open, so I still couldn’t get any tylenol until 6, and then we boarded. We flew on Westjet and the 2.5 hour flight was not bad. The seat was comfortable enough (we were in the 3rd row) and unlike the bus there was no jostling around so it was reasonably comfortable. My wife’s dad picked us up at the airport and we had an hour’s drive home, which was a little bumpy and uncomfortable but not nearly as bad as the shuttle bus.

There’s something magical about being home after an ordeal like that. Beyond finally seeing my kids again. I think it’s true that I’ve recovered faster and easier since I’ve arrived home. Maybe it’s that I could finally relax. Maybe it was the reduced stress of having my own bathroom or wearing normal clothes, or my own bed. Maybe it was my wife’s cooking and getting back to our normal diet.

When I got home, the first thing I did was weigh myself. I was 215.5 lb before flying out for surgery, and 174.5 lb after returning home – 41 lbs lost.

Now, after almost 3 weeks at home, I’m able to make short trips to the store, walk for about 15 minutes before my hips hurt, and can do simple things like wash my own hair and put my own socks on. Stuff you really take for granted until you can’t do it.

Final Words

From here on in, I play the wait and see game. There will be regular visits to Sunnybrook and regular scans for the foreseeable future now as they monitor my abdomen and look for any recurrence.

My business is stronger than it has ever been, despite this building recession, and I attribute that fully to the strength of the staff and the preparations I was able to make in 2008 to assist them.

The whole experience worked out very well for me, all things considered. I know this was a combination of my age and good health, and lots of prayer.

I wish you all good health. I saw the mild side of cancer – and it pains me to think of all the people, some whom I’ve known, suffering or taken by this terrible disease.

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42 thoughts on “My Ongoing Battle with Pseudomyxoma Peritonei (PMP)

  1. Thanks so much for sharing your story. It’s great to hear that you are recovering well. Being with the family is sure to help speed up the recovery.

    I can’t help but think that the hospital machines taking to you might have as a result of us planting that bug in your head when we made your computer talk to you.

    Get well, and see you around some time soon.

  2. Ron and Sylvia Boissoin

    Steve, so glad to hear from you. Your Dad has been doing his best to keep us up to date but this is a truly amazing synopsis. All the very best Ron and Syl

  3. Hi Steven and Sharon & those three girls

    I picture you from the past all standing straight,tall and healty and I picture you again like this. Steven I admire you courage and your strength and Sharon I know that it takes an equal amount of courage and strength to sit by Steven’s bed side and watch the process unfold not knowing what will come next. I want you to know that you have been in my thoughts since Sylvia told me about the start of your ordeal at the end of last year. To Margaret and Bill and your sisters who all take this journey with you may you all be blessed with an invisible cloak of strength to support each other. It is times like this that you find out so clearly how lucky we are when we have loving families.

    By the way tell you mum that those African Violets that I was able to get going from her instructions have just bloomed. Marg its a sign of new life for you all. And by the way Steven I can’t twitter you, in fact I am so out of touch with the technological world that I don’t even have high speed internet!!! I even tried a rocket stick (Rogers) but since we can’t get cell phone service here it didn’t help. I even sent a letter to my MP suggesting that they spend some of that infrastructure money to get good services to rural communities. But who lidtens to me.

    Love you

    Ann

  4. Wow. I think when I asked Craig where you disappearing for 3 months his response was ‘clean up the remaining crap from the appendicitis.’ Clearly I underweighted the ‘crap’ part. Glad it we went well, all things considered.

    And yes, that flush stuff they give you is horrid. Nothing like liquid plastic.

  5. Much Love and Positive Vibes Steve ❤

    You will be as perfect as a cracked coffee cup before you know it 😉 and the whole experience will undoubtedly be like a flash in the pan.

    I look very forward to seeing you back around the office as soon as your healed up enough for it… actually I’m sure that we all do.

    Awesome Post!

  6. Richard Gauder

    Thank you so much for sharing your story. It’s wonderful hearing the facts rather than imagining what was going on. Cancer to me has and is like this evil jack in the box that keeps popping up. It took my mom earlier in my life, my sister had breast cancer, Dad prostate, it took my mother in law, the week you went out east saw 2 more “discoveries” in my circle of friends & family. It’s just sickenning. But then you describe your fight back. This thing wasn’t going to beat you. No, instead of shutting down your business you used it as an opporunity to change it and make it stronger. Your situation challenged people around you to step up, mostly likely changing them. You are a perfect example of that saying, that saying “that which doesn’t kill you makes you stronger”. I am honoured to know you and am excited about what you’ll do next.

  7. Karen Boissoin

    Wow, quite the experience! Glad to hear you are feeling better and on the road to recovery, albeit a long one. Say hi to Sharon and the girls, and hope to see you soon!

  8. Jodi Ritter

    Your father passed on your story to me and I will be sure to give my mother a printed copy. My mother had mentioned that you had been sick, but I certainly had no idea that it was to this extent. Although my memories of my Oshawa family are vague – usually surrounding big Ukrainian weddings in the early 70’s – your story brought tears to my eyes as I am of similar age with two young children. I have experienced how difficult it is when sickness interrupts your life and how long stays in the hospital puts everything into perspective. Take care and I hope a speedy recovery.
    Enjoy the lovely Spring weather – I hope that it is here to stay.

  9. Laura Vetzal

    I had someone tell me once that it’s the Vetzal curse. We go through just about everything, but damn it we are are too stubborn to let it get to us.
    Glad to have you back!!

  10. Liisa Ikavalko

    Hi Steve,
    Yet more proof that you are such a strong and tenacious person. I continue to admire your achievements.
    Best wishes for a strong and steady recovery.

  11. Peter Forint

    Thanks for sharing your experiences. Your strength and courage are amazing and are inspirational. And thank goodness we live in such a wonderful country with wonderful health care professionals.

  12. DJ Drummond

    Hello Steve and family;

    I just read your account and I am feeling a rush of many emotions. First off, thank you for writing your account, it makes a real difference not only for all of us fighting PMP (I was diagnosed November 2006, getting treatments at MD Anderson Cancer Center here in Houston) but also for our friends and family.

    Like you, my cancer was discovered through my appendix – I passed a kidnet stone, the doc wanted a CT scan to make sure there weren’t more stones, they noticed something wrong with the appendix and while removing the appendix the surgeon found the tumors. I was extremely lucky, they caught it early enough that I only lost the appendix, and the prognosis is cautiously optimistic, with the tumors being treated chemically to keep them from growing – the theory is that if they don’t grow beyond a certain size they won’t metastasize – maybe, don’t know, hope for the best, all phrased in comforting technical terms which sound fine until Dr. Lambert (now Mansfield, Dr. Lambert went back to Massachusetts) reminds me that I should never forget that the tumors are there, like biological mines which could go off never, or anytime they choose. Even so, I feel guilty whenever I hear about some of the fellow PMP ‘belly button club’ members whose fight ended all too soon, while I got off with a couple minor surgeries and a drug regimen.

    Telling your story is as heroic as your fight, which deserves praise and respect.

    Thank you.

  13. Doreen

    Steve, I am happy to have read that your journey thus far has been successful. I am very interested in knowing who your doctor at Sunny Brook is as I too have PMP. I was originally mis diagnosed with Ovarian Cancer, had surgery and now 6 years later still play the wait and see game with increased pain and bloating from the fluid. Any info you can provide me on your medical team would be very appreciated.
    Take care and keep focusing on the postive, I am sure with your mindset you will heal and continue to enjoy all that life is giving you. Never underestimate the power of home and family – especially your wife.

  14. Kelly Mathieu

    Your story is all too familar to me. My husband went to QEII Oct 08, basically had the same procedure and then some. His surgery was 21 hours long and was in the hospital for 79 days due to compications. He was refered to the Dr. in Halifax from a Dr. in Sunnybrook was well. We live in Kingston Ontario so I completely understand the ordeal that you and your family have been through. You were lucky enough to have had your wife with you. I had to stay in Ontario with our 2 girls. We are now awaiting for the results of his 1 year CT scan. Thanks for sharing your story. I wish you good health!

  15. David Mason

    Hi Steve,
    Its good to read you account of your battle with PMP. I live in the uk and I have just been diagnosed. Yesturday the hospital rang with my latest CT results that have confirmed PMP and that it has increased since the last CT. So the Sugarbaker operation is a must for me now, just not sure when. My family is pretty devastated and we are all trying to come to terms and prepare ourselves for whats to come. I too have started a blog to try and track what goes on in the hope it might help someone in the same predicament.
    Good luck for the future and I hope you stay PMP free.

    Dave

  16. Carmen

    Hello Steve,
    I was looking for more information about this “mystery disease” because someone I know was just diagnosed, and I found your story. I am completely moved by your strength and obvious dedication to learning everything you can about all of the medical care you recieved. I am a nursing sudent in Winnipeg, and I am completely inspired by everything you wrote. Inspired to teach my patients and their families, to follow my intuition, and to always treat the person, not just the disease. Above all, my eyes are opened about the healing power of family support and how the stress of being in the hospital can hold you back from healing at times. I will always remember your story, and I feel that just knowing it will make me a better nurse. So, I sincerely thank you, and I hope the people I care for and their families do as well. Best wishes to you and your family!

  17. chava

    Steve,

    What you went through has got to be one of toughest battles that anyone could every go through. God Bless my friend, reading your events brought back alot of memories. Memories I hope you and I or anyone else who has already gone through this will never every have to go through again. We have a long life ahead of us and last but not least, STAY POSITIVE. That’s the best medication anyone can ever have!!!

  18. Laurie

    Dear Steve,

    My husband is going through your experience right now – we are at Day 17 and I truley appreciated your insight into your experience – We have ended up in Calgary and have been very happy with the excellent care of both the surgeon, his team and the nursing staff. Reading your story gives me a better understanding of what he is feeling – I especially laughed as you recount your “special morphine trips” – my husband had a similar experience with the landscape changing every time he closed his eyes. We wish we would have been able to read this before surgery – we both went into this with some delusions – he is a strong healthy 50 year old man in the best shape of his life – we didn’t anticipate how much ground he would lose – every walk is a small victory of strength and stamina! We too look forward to going home to be with our children and know that recovery is always better when surrounded by the people you love. Thank you for taking the time to tell your story – it has helped me today. All the best to you as you continue the PMP journey.

  19. Suzanen

    Hi Steve
    Our journey through this battle with PMP has begun, my husband has been referred to Halifax for his surgery and to the same surgeon that treated you. I cannot thank you enough for giving us the information about Dr. Giacomantonio, the cancer specialist in St. Johns did not hesitate to refer us. Dr. Giacomantonio had just given a lecture at Memorial university 1 week prior to our consultation. Everything is happening quickly now and we know that hte road to recovery is in sight. I will keep you updated on our progress. Again, thank you for sharing your experience…all the best to you.

  20. Christine Crawford

    Steve, we’ve never met. I,m 36 and had the Sugarbaker a year ago in Halifax. Your story is my story but I did not have complications. I recall the experience as being a nightmare…and you call it “the mild side of cancer”. I am extremely healthy at the moment and hope you are too… but am struggling with putting it all behind me because. Your perspective helped.
    I really needed to find some words today…nutrition books weren’t cutting it. So, thank you for taking the time to post this and for your positive spin on it as the ‘mild side’. I will try to keep this with me. All the best to you and your family.

    • Mary Ann Mosher

      Hi Christine, I hope you are doing well. I am sooo frightened for my sister Cathy who , hopefully, will be a candidate for the Sugarbaker procedure.in Halifax. She is scheduled to meet with the surgeon on January 4, 2012. I would love for her to speak with you, if you are willing, so that she gets some insight into what she can expect.. I am so encouraged by your words that you were and hopefully continue to be extremely healthy now. She sooo needs to hear this! Would you be willing to connect with her? Please let me know..at peace.42@hotmail.com .All the best to you in dealing with this nightmare!

      • Hi Mary Ann,

        Good luck for your sister – only a few days away from her appointment. Dr G was very thorough with me, and gave me an excellent idea of what to expect, covering a lot of the decisions he’d have to make while I was on the table. It’s a scary procedure, for sure, but a few of us on here are living proof this can be beaten.

      • Sharmaine

        Hi, just wondering how your sister made out, my mom has had a consultation with the same dr. in Halifax and he wants to do the sugarbaker with her as well. I have read lots of different things about the procedure but he told her she should be in the hospital for about 2 weeks and I am wondering how accurate that is. We are from Newfoundland as well.

  21. Jeff Geddes

    Hi Steve,
    I have a simular story as well. My Appendix burst May 29 2010. The surgon decided to remove my appendix at a later date Feb 3 2011. They discovered adenocarcinoma cancer from a piece that they removed from my bowel where the appendix use to be. Not knowing the extent of the cancer spread,on April 5 2011 they removed my acending colon and 18 nodes. Where they discovered that my Liver, Adominal cavity, peritonie and 3 nodes have cancer. It spread this far in less than a year. I’m still recovering from the surgery on April 5th 2011 and I am doing very well. I have been refered to Dr. Giacomantonio and hope to see him very soon. I noticed that the removed your spleen and gall bladder. Was your cancer adenocarcinoma? Did it spread to the Gall Bladder and spleen or was the removal of these a precaution? I’m also 40 years old with 2 little girls and have no idea how successfull this proceedure is. Did Dr. Giacomantonio give any indication on what his success rate was? My doctors are very certain that I will need the Sugar Baker proceedure as well. Any other advice you may have will be appreciated, like a good place to stay for my Wife in Halifax.

    Thanks again for posting your experiences. This is a rare situation and hearing other peoples experiences is very informative and gives me hope. Also, it sounds like Dr. Giacomantonio may be a good choice and an experienced doctor to get me through this bump in the road.

    • Hi Jeff,

      Yup, it was adenocarcinoma. It hadn’t spread, we’d caught it quickly thanks to the initial tumour bursting through my appendix. It’s 3 years now since my sugarbaker. I’m down to annual ultrasounds at Sunnybrook with Dr. Law in the Odette Cancer Center, and everything looks really good for me.

      An experience like this is life-changing and awakening. I’m Stacey now, transitioned to female, after 30 years of hiding and denying who I am. Treasure the life you have.

  22. nocturniawebcomic

    Hi Stacey-
    Thank you so much for sharing your story. I’ve just been diagnosed with PMP ( from mucinous adenocarcinoma) and they’re referring me to the Calgary centre for a Sugarbaker. Not sure when yet, but the scariest part was trying to imagine the surgery and the aftermath. Thank you SO SO much for sharing this, as it will hopefully help me and my family prepare better for it.
    I’m also an entrepreneur, so you have given me some hope and ideas on how to keep my business alive while I am dealing with this. Thank you again…!

    • Phyllis Eikre

      Hello. My name is Phyllis and I underwent surgery inn Calgary with Dr. Mack in April 2010. I am not sure when your surgery is but may be able to answer lots of questions and maybe give you some tips. You are certainly in good hands in Calgary. You can email me at peikre@kcdsb.on.ca.

    • Mercedes

      Hello

      I just read your message to Stacey, I am being diagnose with PMP as well since I had a hysterectomy last April, I am talking to doctor Mack from Tom Baker cancer centre in Calgary. I will have my next appointment this Tuesday sept 3 after my last CT-scan to see how much it grows. To heard about other people experiences give me some hope, honestly not sure what to do, as this is a rare condition and I am not sure about doctors experience

      Hope you are doing well, take care and all the best in your journey

      Mercedes

  23. Phyllis Eikre

    Hello. I was so happy to find your story. I was diagnosed with PMP in October 2009 when I underwent emergency surgery to remove my appendix. I was then referred to Dr. Mack in Calgary where I underwent surgery in April 2010. I live in Ontario and my children were 14 and 17 at the time so while my husband was there for the surgery he could not stay. My story is very similar. They removed my appendix, gall bladder, ovaries, uterus, omentum, part of my bowel, part of my liver and part of my diaphragm. I also had inter-peretonial chemo therapy. Your story is so familiar. Originally I was told that I would have a two year life expectancy but I am feeling well. I am curious to hear how you and others are doing. I am always happy to talk to others if I can help in any way. My email is peikre@sympatico.ca.

  24. So good to read someone else’s story. After months of having problems with my bladder, I was diagnosed with ovarian cancer after an ultrasound scan. After a radical hysterectomy, I was diagnosed with PMP. I have since had cytoreductive surgery and HIP and 4 days of EPIC. I’m now 9 months out from my operation and still feel like I’m on the road to recovery – it’s been a long 9 months too.

    One of my coping tools has been to read other people’s stories and not feel so alone! Thank you very much for sharing this story.

    • Mercedes

      Hi Angela

      Hope you are doing well, I am being diagnose with PMP last month and I am not sure what to do yet. It’s so new to me and I am scare. I live in Calgary, I had a small tumor in my left ovary and when I had hysterectomy last April, they discover I have an appendix cancer and they took my appendix the same day together with my ovaries, utero, cervix and phalopian tubes.

      Now I will have my next appointment this sept 3rd to discuss my last CT-scan done in August, they said before I need Sugarbaker surgery, but I am not sure how many cases they see it here in Calgary.

      Take care and all the best in your recovering

      Mercedes

  25. Betty Chrisman

    Iam Betty Chrisman from Harrodsburg,ky I read your story hope you are still doing all right. I have pseudomyxoma peritonei and it started from my appendix ,I have had to surgerys so far . Mine was done in uk medical central inLexington,ky they have good Drs there. Hope to hear from you thanks for your story

  26. Bigfoot

    I had surgery with Dr. Sugarbaker in 2009 and the IV machines talked to me as well. The difference was that they used the voice of Billy Bob Thornton from the movie Slingblade.

  27. Mercedes

    I hope all of you are doing well in different ways, finding hope, peace and more reasons to be part of this wonderful world, enjoying every sunny or cloudy morning, enjoying a kiss from your kid or significant other or maybe just enjoying a good book… Anything will count if you really feel love in your hearth.

    I life in Calgary and I am going to see dr Mack on sept 3rd to see some new results and a possible surgery as I was diagnose with PMP last month. Life is wonderful and I am planning to stick around, hope to continue reading some update, this always helps.

    Take care and love to everyone

    Mercedes

  28. Augusto Diosdado

    Am happy for u.only some one the have it knows how u felt. Am a low income person ,and it’s hard for my to get mine procedure done.jus like u I have 2. Little ones.God bless u.

  29. Tom Walker

    My younger son had this procedure on December 4 2013 and was in the ICU for about 3 weeks then a ward for about a week and went home on December 29.
    His biggest issue is gaining weight with the reduced food capacity but he is slowly getting there 10 pounds in the last month. He was 28 at the time of the surgery and in otherwise good health. Now is pretty much back to his old self (sharp rapier like wit with a dose of smartass thrown in) and is looking forward to getting back to work.

  30. Margery Hannah

    Went to the emergency room in Dec 14 because of a swollen abdomen. Surgery was performed 2 days later… appendix removal and full hysterectomy performed. A month later I was told I have PMP. The next day I went vegan and within 2 days I felt 98% better. I am about 1 & a half months into eating all vegan, about 95% raw foods, and am feeling great. Chrisbeatcancer.com has been a huge source of info and support for me. I suggest it to anyone going through cancer. Love and Light, M

  31. DAMIR

    Pozdrav.Ja’m Damir from Croatian. I have 42 godine.U September 2014 I was diagnosed with psedomyx peritoney hunting built, after surgery slijepg intestine in srpnju.U August I had a moment of CRS plus
    HIPEC 11 sati.Dobio ileostomu.Ukonjeno colon, peritoneum, omentijum, resection of the small intestine to three mjesta.Pošto PMP is a rare disease doctors in Croatia have little or no experience with the PMP. However, I think that my surgeon odradijo good job in my slučaju.Tri onkooga with whom I bijo in contact are of the opinion that chethere is an effective chemotherapy for PMP thatmotherapy in my case there is no smisla.Zanima me if me who can say whether

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