PseudomyxomaPeritonei

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    The Christmas Tree

    <p>The Christmas Tree</p>
    1 person is talking about this
    Community Voices

    The Christmas Tree

    <p>The Christmas Tree</p>
    1 person is talking about this
    Community Voices

    I used to be so strong

    I used to be so strong!

    I could marvel at my tenacity & ability to achieve big things for a small town girl. It was no big deal to leave my family for the big city, interview managers, call venues for gigs, call up the Winnipeg Jets & ask to sing the anthem, move to Vancouver by myself because it was the last time I hoped to be a party of 1. I met the love of my life in YVR & we will celebrate our 12 year anniversary on Jan 10/19. He was attracted to my independence & fearlessness. Now I rarely leave my home without him.

    So what happened? LIFE!

    My brother died, we got engaged, bought our 1st home, planned a wedding, moved, & got married in 6 months. This caused me to seek help for #Depression & #Anxiety.

    Being open about mental illness lead to bullying from coworkers who nicknamed me “Rollercoaster”. I was fired without cause NYE ‘08, but was too fragile to pursue a human rights complaint. Then my husband was fired 5 days later. So, we both took whatever jobs we could in order to stay afloat.

    We both had jobs we loved & felt like we were winning again & then my appendix ruptured. I was so scared of being fired, I went to work for 5 days until I passed out from septic shock. Even ashen grey & with an acute abdomen, the ER could not figure out what was wrong with me. My temperature & blood counts were fine? The triage nurse that checked me in was leaving & saw me still sitting there. She found the Doctor & I was in surgery a ½ hour later. That was followed by 10 days in the hospital because my darn bowels would not wake up.

    I tried going back to work, but between the “IBS”, that’s what the Doctors called my gastro issues, & migraines I’ve always had, my work attendance was poor at best. We were also at an ER weekly bc I was SCREAMING in pain. Doctors began to avoid us, a Nurse actually asked me not to come back anymore. They just couldn’t help me. I had to quit my job when I was hospitalized for 6 days for #Migraine treatment.

    So with me not working, we started liquidating our savings & sold 1 of our cars, but we got to keep our house.

    But, the next organ to go was my Gallbladder. This was supposed to fix all my Gastro issues. It just made things worse & our rotating hospital ER visits continued. I would make a point of putting on nice clothes & have my business husband stay with me as I had been made to feel like I had no credibility on my own.

    We fought so hard, but we could no longer catch our tails. We were paying this to pay for that then using that money to pay for… We had to sell our house. It sold & we moved into a basement suite. Defeated but rich in love!

    When Western Medicine turns on you, you try other things. We tried massage, chiropractor, acupuncture, colonics, & settled on Naturopathy. I was getting a Myers Cocktail,

    https://balancenaturalhealthclinic.ca/blog/2013/the-myers-cocktail-a-boost-for-mood-energy-and-immunity

    & instantly started having seizures. Then I started vomiting & was moaning in pain. We went to our local hospital & found I had sludge in my common bile duct. My liver enzymes were through the roof & I wasn’t even a weekend warrior anymore.

    So, I got to be the last ERCP before the Xmas shut down. I was in a large makeshift room with 20 other patients. I had 3 IVs going, so I put on red lipstick on December 25th because I’m festive like that. Visitors of patients bullied me? Well you can’t be that sick if you can put on your make-up! Grinches!

    I went home on December 28th, but I woke up so weak I couldn’t get out of bed. My husband came home & took me back to the hospital. This time I was septic again, but they couldn’t figure out why. So I underwent a barrage of tests. I had a CT on NYE. The 1 of 3 Gastroenterologists still talking to me was called in at 10AM New Year’s Day to tell me I had #PseudomyxomaPeritonei,

    https://www.cancerresearchuk.org/about-#Cancer/pseudomyxoma-peritonei/about

    a very rare cancer that spreads mucus throughout your peritoneal cavity. It is not detectable in blood or lymph & is usually found by accident.

    Just when I get my mind around having such an invasive cancer, it was immediately taken off the table. I was being treated by the student team & the Gastroenterologist that did my ERCP. The hospital staff blamed the students for the wrong diagnosis. I was then removed from a room & put up again in the hallway. I told the nurse this was my 3rd hallway. She laughed & told me I could write a review on the best one?

    I don’t know why medical staff seem to dislike me. I’m polite, try not to be demanding but if you question anything or get caught reading your chart, you’re treated POORLY. How dare I look for answers that no one was capable of giving me.

    This was a really rough 18 day hospital stay, but at least I did a gastric emptying test. This showed slow emptying of the stomach, weak peristalsis, & malabsorption. However, somehow I caused all this so the next Doctor to visit me was a Psychiatrist. I was so mad but knew I had to keep it together. It makes me so angry that when there isn’t a nice, tidy answer to a medical query they switch to it must be her #MentalHealth. Anyways the Psychiatrist couldn’t find any acute mental issues either.

    I never got better. However, we FINALLY got a Family Doctor during this time which is like winning the lottery in Vancouver. It’s like proof you’re a good person and not just a “drug seeker”. I was sent to an Internist who confirmed #Gastroparesis from all the abdominal trauma. His recommendation was pain control as this was as good as life was going to get for me.

    This was April 2011 – January 2014. I applied for #Disability & was denied 3 times, appealed 3 times, had a videoconference, was awarded disability, only for that decision to be overturned, then was awarded disability this June, 2018.

    It’s hard enough fighting for your life without being made to feel like a liar or inconsequential. We had lost everything we could, including our window of having a family. We were both meant to be parents so this is still hard for us to accept.

    The years since have been a long game of Whack-a-mole. I get knocked down, but get up again. It could be severe stomach pain, no energy, inability to eat, #Insomnia, #Fainting spells, seizures, migraines, & having to do an enema to have a bowel movement left me passive suicidal. Again I sought treatment & saw a therapist once a week. Just when I was getting to the root of my depression, the government funded program ended. I felt another loss & a return of depression & anxiety I fight daily.

    But somehow, some way, I found a little more gumption.

    In December 2016, my former band called me to do a 20 year reunion. In the audience was an old friend with an indigenous band and asked me to join. I had always felt ashamed of my Métis heritage & now reunited with my birth family, I was ready to explore the culture, spirituality & sing the stories of the Anishinaabe Peoples. We were nominated for a Juno Award. What a trip!

    So on the days I feel like I can’t go on, I look at this picture & say

    STAND UP & SHOUT!!!????

    & so can you! I believe in your inner warrior!♾❤

    Why an Appendectomy Won't Cure Pseudomyxoma Peritonei

    When people learn I survived cancer of the appendix, they often ask if I just needed an appendectomy. If only. Unfortunately, the vast majority of appendiceal malignancies are discovered as stage 4, when it’s called pseudomyxoma peritonei (PMP). Once found, tumors have burst through the appendix and spread to the outsides of various organs within the abdomen, and usually attach to the abdominal lining called the peritoneum. The specialists that treat our disease say it’s as if a bag of miniature peas has spilled within the abdominal cavity. Once any surgeon sees such extensive disease, they know something is seriously wrong, but usually don’t know what they’re dealing with. Unfortunately, many patients with PMP go misdiagnosed by clinicians who aren’t trained to treat this rare disease that affects only 2 in a million people every year. Patients are routinely told they have only a year to live, because local pathologists can’t diagnose it, and even if they do, local surgeons don’t know how to treat it. I was lucky my surgeon had seen one case of PMP earlier in his career, so he knew what he was dealing with. When he operated on me for what he thought was a burst appendix, he found my omentum studded with tumors (did you even know you have an omentum?), and he found a cancerous phlegmon surrounding my enlarged appendix. Because he recognized the disease, he conducted a right hemicolectomy, which means he removed the appendix and one foot of large intestine. This is just the beginning of treatment. Once the source of the cancer is removed, specialists must then remove the tumors that have spread throughout the abdomen. Luckily, most cases of PMP are contained within the abdominal cavity. Although the tumors spread within that compartment, they typically don’t move outside of it. For patients reading this now whose PMP has spread outside their abdominal cavity, please don’t fear and read on, because we know patients who’ve had extensive disease and have gone on to be cured. The specialists will take 10 to 15 hours to remove the PMP through cytoreductive surgery plus hyperthermic intraoperative chemotherapy (CRS+HIPEC). This is the standard of care for treating PMP. In plain English, this means these dedicated surgeons will take as much time as necessary to remove all the tumors, and then fill your abdomen with hot chemotherapy, which they circulate for one hour. This is serious stuff. Patients sometimes refer to it as the MOAS: the Mother of all Surgeries. If you need a specialist to treat your PMP, then visit PMP Pals for resources. Be sure to seek a specialist, because the literature tells us it is important to get care at a hospital that does many HIPEC procedures a year, with a surgeon that’s already done 130-140 HIPEC procedures. If you have a low grade tumor, you might be done with your treatment. If you have high grade tumor, you’ll probably be doing intravenous chemotherapy, too. You’ll likely go through FOLFOX or FOLFIRI chemotherapy protocols for six months to one year. You can go here for more information on the chemotherapies you might take, their side effects and how you might reduce those side effects. To see one patient’s recent journey through HIPEC, check out this fascinating article by STAT, an online health publication of the Boston Globe. So, unfortunately… no, an appendectomy wasn’t the cure for my appendix cancer. But if you really want, I’ll be happy to show you my scar. The Mighty, in partnership with Fuck Cancer, is asking the following: Share a story about one moment or conversation related to a cancer diagnosis or experience that made an impact on you. Find out how to email us a story submission here .

    Receiving a Pseudomyxoma Peritonei Diagnosis: What to Know

    Approaching the Christmas season of 2004 I was at the top of the world with a new job at a pharmaceutical company, attending a top-tier business school and my wife was pregnant with our first child. On Christmas Eve, I learned I was also a cancer patient with advanced pseudomyxoma peritonei (PMP). I was lucky my local surgeon had seen one case of PMP before in his career and mentioned hyperthermic intraperitoneal chemotherapy (HIPEC) as a treatment option. I was also blessed my father found PMP Pals on the internet. I traveled to some of the best health care facilities across the US and like many PMP patients, was told I had a year to live. I then visited the HIPEC specialists, chose Dr. Sardi as my surgeon and began my year-long treatment that included chemotherapy, cytoreductive surgery and HIPEC. Ten years later, I remain free of disease. My body is changed from the surgery. Some days are difficult, but I’m grateful for the days I’m given. During my recovery I had the pleasure to become friends with Gabriella Graham, the founder of PMP Pals, as I lived nearby. I was a caregiver and a confidant but most importantly a friend. I’m grateful my family got to know Gabriella who was always a lady, no matter how difficult her circumstances. Gabriella’s journey was different than mine. She was never free of disease and knew she never would be. But Gabriella made a conscious decision to focus on her blessings and be grateful for her portion, rather than focusing on her plight. Gabriella dedicated her life to helping PMP patients with a message of hope, tirelessly supporting them to the very end. The point of this story is, no matter what your circumstances are, you need to know there’s hope. Maybe you’re afraid because you’re watching and waiting; please understand although this is difficult emotionally, it may be the best thing to do. Perhaps you’re depressed because you’ve had a recurrence. Try and have hope, because we know patients who’ve had many HIPEC surgeries before finally becoming free of disease. Maybe you’re disheartened because you can’t find a surgeon to help. We know patients who have been turned down by specialists but accepted by others. The truth is, even if you’ll never be free of disease, there is reason to be hopeful. Regardless of your circumstances or the challenges of your disease, you can do great things in this world, just like Gabriella and other PMP Pals. I’m grateful to have the opportunity to lead an organization dedicated to giving you help and support while you navigate life with PMP. If you want encouragement and support, visit the PMP Pals’ website at pmppals.net. It would be our pleasure to put you in touch with someone in similar circumstances. PMP Pals has hope for you. A version of this post originally appeared on PMP Pals here. The Mighty, in partnership with Fuck Cancer, is asking the following: What’s the best advice you’ve gotten or a mantra that spoke to you following your diagnosis? Find out how to email us a story submission here .