I do an exercise class and I was having trouble keeping up and my belly was growing with no changes to my diet. In my head, I was thinking that was just signs of perimenopause and that was my new figure. Some women just have a muffin top at 44, right? I was also going to the restroom for frequent urination. I was under the care of a urologist for that at the time of my diagnosis.
The disease was actually growing out of my belly button! I thought it was just some unhappy skin. I started with a GP and he said it was nothing to worry about and prescribed a round of antibiotics. I asked what to do if it was still there after the antibiotics and he told me to see my dermatologist. I ended up at my dermatologist two weeks later and they said it appeared to be something with my urachus not closing up from childbirth. When I got in the car, I called my urologist as I thought she might want to know I was leaking urine from my belly button and she called me that afternoon to say I was getting the runaround. She looked at an old scan and I did not have that condition AND if I did have it, it would have been there my whole life and not just appear in my 40’s. She ordered a scan for my abdomen that day to see what was going on in my stomach. The night of the scan, my urologist called me to say that I had a football size tumour on my one of my ovaries and that she was referring me to an OBGYN/Oncologist/Surgeon. We met him the next day. That was Wednesday, July 19, 2017, and he did my surgery on Monday, July 24th. Like so many other women, we originally thought it was ovarian cancer.
The day after the surgery, we learned from my pathology that it was pseudomyxoma peritonei or PMP. I guess that makes it about a week from when the dermatologist misdiagnosed the skin coming out of the belly button to when I got the labs from my surgery. I am not sure how long it would have taken me to know otherwise. I was in the hospital for one week in Austin and that is when we started researching where to have my next big surgery.
After looking into three surgeons in three cities, we went with Dr. Keith Fournier at MD Anderson. No regrets!! My surgery was November 15, 2017. It was 13 hours long and the HIPEC¹ was given with no further chemo following the surgery. I took a digital picture frame loaded with pictures of my children, family, and friends to the hospital with me. I would stare at that for hours and it just made me happy. Then the nurses and doctors got to see a glimpse of my non-hospital life.
My stomach would not wake up after the MOAS² and HIPEC and I was on a PICC³ line for 8 weeks. That was no fun and showering was a pain. I am stilling getting my energy back and I have to go to bed really early. My friends came out of the woodworks and I felt so much strength from that. I was in hospital for three weeks and spent another week in Houston for post-op treatments. Then I was able to come home to Austin on December 13th. I had home health care until January 2nd.
During my recovery, I binge watched things. I did not have the concentration to read much, but I enjoyed watching movies and TV shows.
My abdomen was riddled with disease and it is hard to believe that I could be cured. My surgeon said that he was 98% sure he could get it all. That is almost like 100% right? Then my surgery was a success. Unlike skin cancer, where the mole is removed with a clear margin, this cancer feels so much harder to beat. All it takes is one cell left behind and it can start all over again. I can tell you that I am WAY more intentional with my time left on this earth.
My husband and brother have been amazing. They did all the note taking as I would hear one bad thing and check out completely. My friends and family were amazing and I kept a blog website that kept me going and my friends and family informed. I got cards, texts, and emails. My mom and mother in law took turns staying at our house to take care of our children (11 and 14) while my husband stayed in Houston with me. The support group was a help too.
I am happy to say that at seven months out, I am almost back to myself. I have some pain from the incision and trouble sleeping (mostly hormonal). I did quit my teaching job and I am working part-time at home to keep me from getting bored. Right before I got sick, we bought skis because I can’t wakeboard and then I was not able to go into the water from my surgery last July. Last weekend, I was able to ski again for the first time in 25 years. I am back in my exercise class with modifications or my core and I am eating what I want.
The biggest change I had to make after surgery was to recognise my physical limits. I am a busy person and it was hard for me to sit still and let other people take care of me.
You need to remember, if something feels off, see your doctor. It is hard having a rare cancer. Get help from a therapist or support group. It feels like a silent illness as I looked so healthy to be about to have this big 13-hour surgery. The HIPEC procedure almost sounds made up. Know your pathology. I love the support group, but I get so caught up on people’s stories, but they might have different cells. Every person is different.
– Michele
HIPEC
Heated chemotherapy, delivered directly into the abdomen, after complete cytoreduction. If the surgeons are able to remove the all the tumours, you will be given a heated chemotherapy drug. This is usually Mitomycin C. This is put directly in your abdomen while you are in theatre and the chemotherapy is left in for 90 minutes. HIPEC will penetrate tumour nodules up to 2.5mm in size. The heat increases cytotoxicity of chemotherapy
Chemotherapy given into the abdomen during surgery is called intraoperative chemotherapy.
MOAS
This is a nickname for the big cytoreductive surgery – full peritonectomy and HIPEC. It was thought up by the wife of an appendix cancer patient some years ago on her blog.
PICC
A PICC line is a long, thin, flexible tube which is used to give you chemotherapy and other medicines. A doctor or nurse puts it into a vein above the bend of your elbow. It can stay in place until your treatment is over.
In case you missed it...
I had abdominal pain and a small hard lump to the left
When I had abdominal pain and a small hard lump to the left, thought to be IBS playing up and that I needed to get it under control. It wasn’t that simple.
I feel so lucky for family love and care
In 2021, in the midst of the Covid-19 pandemic, I had cytoreductive surgery and HIPEC at the Basingstoke and North Hampshire hospital.
I thought I had a kidney infection
I feel great. I was worried about catching colds and things without my spleen but I’m as healthy as I was before. My son and husband have caught colds but I have not which is normal for us. I have caught a sickness bug from my son since surgery but I recovered quickly with no problems and again compared to what I’ve been through, it felt like nothing.
Thank you for sharing your story. I can relate to so much of what you said, including appearing healthy going into surgery, but having a giant tumor. The checking out after hearing bad news is also a very familiar feeling to me. After surgery, I also was so zoned out that watching movies helped me to laugh a little and have something to occupy my time. I usually love to read, but was too tired and couldn’t concentrate like you.
Thanks again for sharing. It makes me feel less alone in this diagnosis.
I too have had pmp. I was diagnosed in April 2018 and had surgery in May. They removed ball bladder ,spleen,full hystercomy, omentum,part of my diaphragm,19 lymph nodes and a large tumour from my bowel. I then had the wash out and spent 9days in intensive care and then three weeks in hospital. After getting home i was transmitted to our local hospital with an infected womb. This was drained and then I had a bad dressing for five weeks. The histology on my lymph nodes showed transmits and they then put me on six months of regular chemo. I then got clots on my lungs and now the chemo is finished innate neuropathy in my feet and finger tips but I am good this will improve over time.
It has been a long journey and I am now disease free. Still get tired today and I am beginning to get fitter but it is slow.
I also have a temporary stom a and am waiting for a reversal.
My faith has grown and my husband has been a rock to me throughout.
Friends and family have been amazing.
Helen
Thanks for sharing this Michele. I totally agree that it feels like a silent illness as I also looked so healthy. I didn’t feel sick or experience any pain. My symptoms were very minor.
I would love to know how Michele is doing these days. I had the CRS HIPEC April 23, 2020. It’s been 7 weeks. I’m better, but it’s been a hard road to recovery
Thank you Terry for asking! I am doing really well. This July will be the 3 year mark from when I found out I had this cancer. I have had 4 clear, 6 months scans and have now been moved to annual ones. Other than a huge scar down my stomach and a tiny bit less energy I would say that I have made a full recovery.
It was a long few months after my surgery and I had to sleep sitting up, slow to eat, and low energy too. Give yourself lots of grace and rest.
Take care and good luck! Michele
I hear all the stories of different ways of finding it is PMP. I got lucky, I was put in front of the right people the first time. Dr Julia Veerapong, at St Louis University Hospital.
HIPEC surgery also, 13.5 hrs. Linda said when the Doctor came to talk to her, she was amazed at the lines around his face from his googles.
I spent six days in ICU, 10 days recovering. Came home, got a little stronger then 12 treatments at every other week. It will be five years this Christmas. Life is so much sweeter now. I still have problems, but that’s from the measures they took to save my life, I’ll take them………….
I was watching the Big Bang Theory. Leonard was dating a doctor and asked “How was your day?”.
His Doctor date answered “I removed an appendix, gallbladder and about 18″ of bowel”.
Leonard answered “I hope that was three people”.
Her answer? “No, just one. He didn’t make it”.
I laughed for a long time………..
Dr Veerapong removed the fatty curtain behind my belly button, appendix, gallbladder, spleen and 18′ of bowel……………and My Happy ass is Still here………….Thank You God…………
Mark
PS I was diagnosed on my 56th birthday. Won’t forget #56………..