This post originally appeared on The Colon Club.
Sometimes I find myself jealous, even resentful of people who beat cancer and carry on with “normal” life. Then I’m quickly reminded of the many friends who have finished the race and are now resting, then I feel guilty. I do not envy my friends who are on chemo indefinitely, or the ones who’ve run out of options. Stage IV is rarely cured. I’m stuck between feeling guilty for being cured, but not well enough to resume “normal” life. I’ll try to explain by sharing some of the burdens on my heart and my dreams.
Short Bowel Syndrome (SBS) and being HPN dependent is not easy, mentally or physically.
SBS was caused by multiple reoccurrences in my small intestine, leaving me with less than five feet of small bowel and zero large intestines. HPN stands for home parenteral nutrition or nutrition taken intravenously (bypassing the digestive tract) in the patient’s home. People have told me how inspirational or impressive it is that I hook up to a six pound bag of HPN every night and act like it’s nothing. But it’s just that… an act. I have no choice. Well, that’s not true. My choices are live like this or die, so I choose life… but it’s not easy.
There are so many things I want to do that I can’t, or think I can’t and I’m too afraid to find out. I dream of going birding in Ecuador. I was there 20 years ago, to visit family, before I became interested in birds. I don’t even know if I can ship my HPN internationally and even if I could, it has to be refrigerated and stored properly. My life depends on it. Congress, in their infinite wisdom, is trying to pass a law that will no longer allow my infusion company to ship across state lines let alone international borders.
Going anywhere new without knowing where the bathrooms are and which ones are clean is stressful.
Having SBS means I have a very high output ileostomy. It’s all liquid, all the time. I have tried everything to slow it down. I’m lucky to absorb the nutrients and fats from what I eat. My biggest problem is liquids. I have to empty my ostomy bag so many times a day I lose count. For the sake of time and space I’m not even going to get into what surgery and radiation did to my bladder but it adds several more trips per day to the bathroom. Today my son said “Can you please go to the bathroom before we leave the house so you don’t have to go 5 times while we’re out?” Seriously?! Where has he been the last 10 years? I could go twice before we leave and I’d still have to go 5 times while we’re out. How does he not understand this yet?
With a Hickman catheter, I can’t get wet. No lakes, ponds, rivers, oceans, hot tubs or salt water pools. This means, for instance, no snorkeling, scuba diving, swimming with dolphins, petting the sting rays at the zoo, white water rafting, wave pool, surfing, canoeing, kayaking, parasailing, water skiing… you get the picture. Putting my feet or hands in the water is dangerous because bacteria from the water can get in a tiny cut and travel to the catheter, cause sepsis and potentially kill me. Even showering is challenging and sometimes scary depending on where I am. Family vacations are difficult and stressful. My sons have never seen the ocean, Niagara Falls, Grand Canyon, or even Lake Erie, which is sad because we live really close. I’m trying to talk myself into going on a cruise but I’m too afraid.
I live precariously on the verge of slightly dehydrated and severely dehydrated.
I can’t afford to sweat. It’s difficult for me to be in the sun. Another dream of mine, seeing The Chincoteague Wild Pony Swim, but the website says in bold “If you go, be prepared to wait for long hours with the crowds in the hot sun.” So that will probably never happen. A few years ago, my husband and I went to Arizona in July. It wasn’t the smartest vacation location for me. It was 115 degrees in the shade. I had to run IV fluids 24 hours a day to replace what I sweated out just standing outside and then stay inside during the hottest parts of the day. I don’t know how anyone with SBS lives in Arizona. Is it even possible?
I’m no better in the cold either. I’m not sure if it’s permanent nerve damage from treatment or lack of body fat but I’m always cold unless it’s above 82 degrees F. I just about hibernate in the winter. I can go weeks without leaving the house at all. It’s sad and depressing.
Keeping weight on is a challenge for me.
In addition to HPN, I have to eat about 3,000 calories a day just to maintain my weight, and I’m still underweight! Then I get to enjoy people telling me how lucky I am that I can eat anything I want and never gain weight, not realizing this is actually a problem. I’ve had quite a few clueless people tell me this over the years.
What was left of my small intestines was so short my surgeon couldn’t pull a proper stoma through my abdomen, so I just have a hole. I wear a convex wafer but it still doesn’t save me from frequent leaks and painful, bloody, raw skin around the hole. I carry a change of clothes with me everywhere as well as extra ostomy supplies. Most of the time I can feel when the wafer seal breaks before anything actually leaks out but sometimes I have unpleasant surprises.
Being in new and unfamiliar places or with new people is difficult.
Even the not-new people in my life don’t understand when I have to leave abruptly. Telling an acquaintance in the middle of a conversation “Gotta go. I have poop running down my leg.” is embarrassing. The general public doesn’t even know the word ileostomy let alone what it is and does. Something as simple as another mom offering to give me a ride to my sons away sporting events is stressful. I always feel safer if I have my car in the parking lot. I can run out there and change my ostomy, clean myself up.
I have everything I could possibly need and have a means of escape if things get really ugly. This doesn’t stop me from accepting. I’ve even chaperoned the marching band at away football games! I’m terrified the whole time and don’t eat or drink anything. But just because things are stressful doesn’t mean I don’t push myself to do them. It just takes courage. Some days I have it, some days I don’t.
My brain has SO much more energy than my body.
I can think of all these grand plans when I’m sitting down but when I get up to do them my body screams, ‘AH, I DON’T THINK SO… NICE TRY THOUGH’. I hate that about me. I wish I could do everything I think I can. I’m not talking about big things either. I’m talking about little things like weeding my garden, canning strawberry jelly or scrubbing the bathroom floor because, let’s face it, it’s been disgusting for a while.
I dream about being a candidate for an intestinal transplant and how that could change my life and make me “normal” but immune suppressant drugs and Lynch Syndrome isn’t a good mix.
I would love to go back to work. I’d never be able to do the job I did before I got sick, which I’m no longer qualified for anyway. I worked so hard to pay off my college loans early then got cancer. Doesn’t that just suck! I’m not sure what I would do if I could, but I think about it all the time.
Sometimes I feel like I’m losing my mind.
I joke about how cancer robbed me of the ability to do complex math, but it’s true. Just like a second language, you lose complex math if you don’t use it. My friends and family tease me by calling me Dory after Nemo’s friend with short term memory loss. It started out as chemo brain, but 11 years later I think it’s partly because I’m not using those parts of my brain anymore.
Who am I? Why am I still here? What is normal? I feel stuck. It’s a lonely feeling. I am grateful for where I am but I still want more of “normal.” A girl can dream right? I’ve put myself in a vulnerable position sharing my heart here, but I’m doing it anyway with the hope that it will help someone else.