Early in 2014, I noticed my waist was expanding without explanation – my diet hadn’t changed and I wasn’t pregnant (After having two kids, I didn’t think much about my “baby belly,” but it seemed larger than reasonable). Then I noticed that when I lay down in bed, my stomach didn’t flatten out like it used to. Also, my abdomen seemed a little tender. I made an appointment with my OB/GYN (gynaecologist), thinking it was possibly a cyst. She ordered an ultrasound, which revealed a large tumour. My right ovary wasn’t visible on the ultrasound and my left ovary was “enlarged and suspicious”. When I asked her if it was cancer, she said, “It’s a possibility”. She said she wasn’t comfortable treating me and wanted to refer me to MD Anderson in Houston, Texas. She also ordered blood work. When the results were in, two tumor markers were elevated, which increased the likelihood I had cancer.

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At the Texas State Fair, four months after surgery

I then saw my primary care physician. He had to officially make the referral to satisfy our insurance company. He also sent me immediately for a CT scan of my abdomen and pelvis. That afternoon, he called and said, “It doesn’t look good. It looks like ovarian cancer”.

I was 35 years old and my children were nine and five. My husband and I were building a house, I was homeschooling our children, held two offices in our local beekeeping association, took care of a large flock of chickens (and a few ducks and guineas), had recently split my three beehives into five, and had just started my spring garden. I thought I was relatively healthy, then THIS. My worst fear, second only to losing a child, was materializing.

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With the kids at the zoo, three months after surgery

On my first visit to MD Anderson, I saw a gynaecological oncologist. She sent me for a CT scan of my chest to check for involvement there. We discussed treatment. Most likely she would recommend 3 rounds of chemo to try to shrink the tumour, surgery, and another 3 rounds of chemo. She also ordered an EGD and colonoscopy to rule out cancer in those areas. Those came back clear. The only thing of note was that my appendix was inverted (surely due to the massive tumour pressing against it!). Next was a biopsy of my omentum. The biopsy report said “metastatic, well-differentiated mucinous adenocarcinoma”. It also said, “The histology and immunoprofile favours an appendiceal primary but metastasis from other sites cannot be excluded”. That was the first time I’d ever heard of appendix cancer. I didn’t know whether to be relieved or more worried. I was referred to Dr. Keith Fournier, an appendix cancer specialist.

I read just enough about appendix cancer to scare me. I read that about 500 to 1,000 people are diagnosed each year in the United States¹. I also read a blog written by a woman whose sister died from appendix cancer. She detailed her long battle and painful demise. I decided not to read anything else. I’d spent two months thinking I had ovarian cancer and researching all kinds of treatments, side effects, and statistics, and I just couldn’t handle any more. I decided to enjoy a few days of “ignorance is bliss” and wait to see what Dr. Fournier said.

Dr. Fournier reviewed my tests and believed it was appendix cancer. He said if it didn’t originate in my appendix, it started in my peritoneum and treatment would be the same. I was shocked when he described the surgery. He said it typically lasts 10 to 12 hours. He listed all the organs that would probably be removed, others that might be, and said I would have a heated chemo wash (HIPEC), during which they would rock me for 90 minutes. I would wake up with a temporary feeding tube and, possibly, an ileostomy (also temporary). The average hospital stay is 22 days. I couldn’t imagine losing so many organs and being in the hospital for so long. And I’d never been away from my children for more than a few days.

 

Rachel continues bee keeping after diagnosis with and treatement for mucinous adenocarcinoma

With capped honey, just six weeks after surgery

I wish I’d found the PMP Facebook groups before my surgery. Even though Dr. Fournier sounded optimistic that he could remove all the cancer, I really didn’t know whether I’d live through it. I really wondered whether I’d be there when my son lost his second tooth or for my daughter’s 10th birthday. If I’d found the groups, I’d have been much more at ease. There were so many others, some twice my age, who’d had the surgery and gotten on with their lives. I found the Facebook groups a month or more after my surgery. The other members have been wonderful sources of information and support.

I had the aptly-named “mother of all surgeries” Wednesday, June 4th, 2014. My husband was sick (lousy timing, I know!), so my sister-in-law drove me to Houston Monday and accompanied me to all my pre-op appointments on Tuesday. My parents met us at the hospital early Wednesday morning to check in. I can’t imagine what that day was like for them. I was in surgery for 13 hours and they didn’t get to see me for another two or three hours. They removed my appendix, right colon, ovaries, uterus, gallbladder, omentum, peritoneum, 1/5 of my diaphragm, the large tumour, a small tumour we didn’t know about from the scans, and scraped disease off my liver and bladder. I scored 29 out of 33 on how much cancer was present when they opened me up. Thankfully, the surgery went very well. Dr. Fournier was able to remove all the cancer he could see. I didn’t need an ileostomy, but I woke up with an iv (actually, I think there were several), catheter, epidural, chest drainage tube, feeding tube, stomach drainage bulb, and an incision from breastbone to pubic bone. I was given four units of blood the night of my surgery and two units a few days later.

The tubes were gradually removed, last of all the feeding tube — two and a half months after surgery. I spent two weeks in the hospital and was released to a motel. A few days later, I went back to the hospital with severe nausea and vomiting. I stayed a few days, went back to the motel for a week, and was able to go home July 2nd.

At the zoo, three months after surgery

At the Texas State Fair, three months after surgery

 

I was amazed at how tired and weak I was after surgery. They had me up and walking the next day, though. At first, I could barely do one lap around the nurses’ station. The first time I took a shower, I couldn’t lift my leg high enough to dry it off and I was exhausted afterward. I spent a lot of time sitting in bed or in a chair reading books and magazines and watching MacGyver. The pain was mostly under control and I felt fairly comfortable sitting. Lying flat was very uncomfortable for about three months, so I slept propped up on pillows. My husband, parents, and sister-in-law spent time at the hospital and motel with me. They brought my kids to see me a few times. Several of our friends stopped by for visits, too.

About a week after surgery, my hair started thinning. I had cut it the day before surgery so it would be easier to take care of while I was recovering (it was long enough to sit on before I cut it). Dr. Fournier had told me I’d lose some, but not all, of it. He was right. I didn’t lose all of it, but I lost a LOT. It thinned for about four months. There were places it was so thin you could see my scalp. I got a free wig from the American Cancer Society and that made me feel better about myself. I didn’t look so much like a cancer patient. It’s now growing back and, while it looks terrible if I wear it down, you can’t see my scalp when I have it in a small bun.

My recovery has gone well. In late July, one of my beekeeper friends helped me check my hives and harvest honey since I was restricted to lifting no more than five pounds. I went to Mom’s Night Out during the first week of August. The next week I attended our monthly beekeeping meeting. My husband was still driving me at that time, but I started driving myself the next week. I took the kids to a birthday party and a science club meeting. In September, we spent a day at the zoo. We attended a couple of local functions and field trips. My husband took a day off in October and we went to the Texas State Fair. I was tired and sore the next day from so much walking, but we had a good time.

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With an observation hive at an Earth Day celebration, just after diagnosis

My 6-month scan in December showed no evidence of disease and my tumour markers were back down to normal levels. My doctors were pleased with my progress. Their only concern at this point is that I gain some weight since I dropped down to 95 lb (I lost a total of 50 lb, about half before surgery and half after). I was told to expect about nine months to full recovery. It’s now been nine months. I still have nausea now and then and I get tired sooner than I would like. I went to the ER on New Year’s Day and was admitted with a small bowel obstruction (we managed to resolve that without more surgery). Otherwise I’ve been doing really well. Homeschool is in full swing (and has been since August). I’ve been playing table tennis each week. With some help from my parents, I’ve started planting my spring garden. I’ll be starting splits of my beehives next month and will be manning the bee table at some events soon. Life is good!

I consider myself fortunate in many respects. I was ultimately relieved I had appendix cancer and not ovarian (or colon, stomach, etc) and I had the “good” kind. My doctor said I have a 72% chance of being alive in 10 years; those are great odds for a cancer patient. One of my doctors guessed that I might have had six months without treatment. I’m happy that I was a candidate for surgery and HIPEC. Without it, I’d probably be dead right now. I was also relieved that I didn’t need systemic chemo. I wasn’t enthusiastic about HIPEC, but at least it was over in 90 minutes rather than lasting for hours at a time, week after week.

Rachel was diagnosed with mucinous adenocarcinoma when she was just 35.

36th birthday celebrations, just after diagnosis

I’m extremely happy it was me and not another member of my family, especially one of my children, who was diagnosed. I don’t know whether I could have handled watching one of my babies go through what I did. I told my husband I was glad it wasn’t him because he’d have had to drive himself to Houston! I don’t like riding in Houston, much less driving in it! It was also better for me to have cancer than either of my sisters. One lives in California and works full-time, as does her husband, to pay off out-of-state student loans and for the purchase of their home. The other is a single working mother. I can’t imagine how either of them would have managed with a cancer diagnosis. The same goes for my sisters- and brothers-in-law; I don’t know what they’d have done. And the timing couldn’t have been better. My husband is a college professor and was able to take the summer off to drive me to appointments and help me after surgery. My recovery was made much easier by the on-line meal schedule a friend created. People brought us meals for two months after I came home. Another friend set up a fundraiser to help with the costs of my medical and motel bills. I’ve been blessed with loving and generous family and friends. I’m thankful I’ve been given more time with them.

Rachel after treatment for mucinous adenocarcinoma

At MD Anderson for the 6-month check-up

My cancer could return. It might kill me one day. But it might not. Nobody knows. I’ve been blessed with good health otherwise, a wonderful family, and great friends. I’ll be 37 in a couple of months. My husband and I will celebrate our 12th anniversary this year. We’ve been blessed with two healthy children. Our home isn’t fancy but it’s ours. We have food on the table and clothes on our backs. We’re happy. Not everyone can say that. I’ve known people who didn’t live to see 30. I know people who were unable to have children and people who’ve buried children. I’ve watched people die from various kinds of cancer and suffer from other diseases. I’ve seen little kids fighting cancer. There are people starving to death. If cancer kills me in 10 years or if I die in a car crash tomorrow, I have nothing to complain about. My life has been a wonderful experience and I intend to make the most of it for as long as I can!

– Rachel

 

 

Rachel

Rachel was 35 years old when she was diagnosed with mucinous adenocarcinoma. Her children were nine and five. She is a beekeeper and home schools her children. She was treated at MD Anderson.

¹According to the American Cancer Society, there are about 221,200 new cases of lung cancer and about 231,840 new cases of invasive breast cancer each year in the USA.

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