16 Things I Wish My Doctor Told Me About CRS/HIPEC Surgery

16 Things I Wish My Doctor Told Me About CRS/HIPEC Surgery

When treating us for appendix cancer, most doctors prepare us well for the surgery ahead, explaining copious paperwork, requisite hospital stays, recovery expectations, and HIPEC technicalities. They get us through tests, scans, consults, and discussions that ultimately land us in the operating room (OR) for 5 to 15 hours. It’s a lot to take in.

Many physicians don’t want to scare us away from the lifesaving surgery and standard of care that adds years to our lives. Other professionals refuse to burden our thinking (and create worry) with a littany of side effects that may – or may not – happen. Almost all of them underestimate the amount of time it takes for us to return to Life at our New Normal. Yes, there are those standby considerations: “Every patient is different,” and “Recovery is not linear.” But really? Wouldn’t you like to know?

With all that in mind, we compiled 16 “revelations” Pals experienced after CRS/HIPEC procedures. We are not medical experts, so simply note this list, and discuss these topics with your appendix cancer specialist and medical team. Not all side effects happened to every Pal, or even most of us. But they do occur often enough that we thought you should be aware. Because you can’t help but ask “Is this normal?” Most times, yes it is. This way, you can prepare yourself mentally in case it does happen to you and you can pivot. (We compiled this list from personal experiences shared during twice-weekly, PMP Pals HOPE Zoom meetings.)

Hair loss:

After HIPEC treatment, some Pals experienced hair THINNING in the first three months post-HIPEC. All who lost hair experienced regrowth in Months 5-6-7.

Ileus: 

Doctors often refer to the ileus as a “sleepy intestine that needs to wake up.” We call it a recipe for vomiting and should be monitored closely. Farts, while good indicators of an awakening gut system, are not “poops.” Be honest about your progress with your medical team. Returning to the hospital after discharge for a still-to-wake-up colon degrades mental recovery momentum. Walking can help, but sometimes Time just has to do its thing.

Shoulder/arm/hand soreness/numbness:

You were just in the OR for many hours, lying down in the same position. We don’t do this when we sleep in our own beds. Pinched nerves are possible but rarely happen…until they do. Talk to your doctor. Some Pals found relief with a gentle chiropractic adjustment; others needed additional expertise to remedy. Still others found the soreness and numbness dissipated with Time.

Difficulty breathing: 

Let’s be honest; someone just had their hands (and tools) in your abdomen. It takes time for things to simmer down and find their right place. This may take days, weeks, months. Many people experience difficulty taking in a full, deep breath. There are several reasons for this. First, your surgeon may have removed portions of a diseased diaphragm. Discomfort may also be residual from the inflated abdominal cavity during HIPEC treatment. Lastly, abdominal clamping used to keep the belly open for surgery can cause internal bruising of your rib cage and oblique muscles that you can’t see. Our experience suggests continuing to use your hospital-issued spirometer at home. Experiment with the 4-count Box Breathing Technique. Talk with your specialist or physician’s assistant if the difficulty persists. If at any time you are experiencing pain or have concerns, advocate for yourself immediately and tell your clinician!

Decreased appetite:

The intestine begins healing within an hour of surgery. And it will continue to heal and adjust to its new length and function over time. When you get home, you may want to eat everything in sight or have no urge to eat at all (usually due to fear or exhaustion). Be gracious with yourself, but make every bite count. Include protein-rich and max-calorie shakes and food combinations post-surgery. Protein provides the building blocks for repairing tissues. If you are having trouble with protein, it’s ok to default to what works for you, even if it’s pound cake…as they say: Life is short, eat dessert first!

Inability to eat certain foods:

As your intestine heals, you may go through periods of digestive change where you tolerate one food well but not another. Then a week later, it reverses. Keep a Food Diary to track your progress. You may discover you have a food allergy that was long masked by other symptoms. Or you may need to switch it up and eat smaller, varied, frequent meals throughout the day. Many foods may move from “Definitely Not Eating That Now” to “Maybe I’ll Try That Again Later” timelines.

Weight loss:

So, you stop eating the day before surgery for bowel prep. Then a week or two passes before you are managing solid foods. Pals have lost anywhere from 15 to 80 pounds while in hospital. Once you return home, monitoring your weight is part of your wellness job. Ask for guidance or a food plan to follow. Creating “mass” is hard to do; don’t wait until you are dangerously low on the scale. Weight loss slows healing, forces your body to improvise, and robs you of needed energy to feel well. TPN (total parenteral nutrition) is a medically prescribed approach to halting declines and is overseen by your medical team. Weight gain needs strategy; check this other blog post about protein and caloric add-ins for smoothies and meals.

“What’s up with that?” episodes:

Many Pals experience diarrhea, constipation, and unpredictable elimination. Some are advised to use diarrhea medications (Lomotil, Imodium) to gain control over unexpected bowel movements. Others need medications to address bile imbalances created by gall bladder removal. Still others simply adjust their diets and decrease water consumption when eating to “prolong transit” (the rate of food moving through the intestinal tract between entry and exit). Other Pals have the opposite problem. As we experiment with food, we will eventually find the sweet spot of fiber, yogurt, or a toasted slice of refined wheat bread to stabilize a reactive gut. Keep a “Poop Diary,” noting the foods you eat and what happens, and in what timeframe. Then work with your nurse practitioner, nutritionist, or dietician to uncover an approach that works for you. Remember too, that as your gut heals and improves, so may your tolerance to certain foods and their elimination.

Abdominus Recti (aka hernia):

Don’t worry, your guts won’t spill out on the floor like a B-movie horror flick. Abdominus recti – the separation of your interior suture line generally between the abdominus rectus muscles at your belly’s midline – is common. Hernias can pose issues for bowel obstruction as the intestine loops out of the abdominal cavity to a space just under the skin and then loops back in. Monitor this closely with your physician. Be smart. To avoid hernia in the first place, heed post-op instructions to minimize lifting of anything over 5 pounds for Weeks 1-8. Gradually increase core activity and impact over time. Wear the abdominal binder. And seriously, no lifting grandchildren, grocery bags, laundry baskets, or ladders in the early months of recovery.

Bumpy suture line: 

Some patients note an uneveness between the two sides of their belly, left and right of the suture line. Upon closure in the OR, your surgeon cannot match your ab muscles up like they were before. But they will do their best. In many cases, the peritoneal lining has been removed on one side and not the other. And in the absence of removed organs, what’s left will settle into their new spaces within your roomier interior. When advised by your physician, try easy elongating massage with a scar cream to smoothing out a bumpy suture line.

Belly buttons:

Moved, missing, or relocated – have this belly button conversation BEFORE surgery! Living without a navel removes mindless gazing, but you certainly want to be prepared for that visual when the dressing comes off. Sometimes, your surgeon can fix a wonky belly button and you come out ahead after surgery. Lint catchers – you have been forewarned.

Tubes – everywhere:

Tubes can be a good thing, even in places where you don’t think they should be. Tubes help you heal quicker. They also give you progress milestones. Tube removal – catheter, epidural, NG (nasogastric tube), drainage, IVs, etc. – are signs of healing and getting a step closer to the hospital exit door.

Weepy suture sites:

Serous, or serousal, fluid is a natural by-product of inflammation and a healing gut. Generally, this fluid is absorbed internally by your body. Sometimes, this fluid seeks the easiest way out, usually an incision site. Keep your dressings clean and monitor for redness, warmth, or hardness which are early indicators of possible issues like cellulitis or infection. Eventually, swelling and weepiness subside. Unsure how to change your dressing at home? Ask your nurse or wound-care specialist to show you how, while you are still at the hospital.

Lack of energy:

Your body is healing inside AND out. So while your abdominal scar staples are removed in two weeks, and that midline scar is healing nicely during weeks 3-4, the inside of you still has a long way to go. This healing requires ENERGY. Give your body what it needs. Eat small frequent meals, chew your food, and focus on easily digestible, high-protein food selections when possible. Nap frequently. Minimize long visits from old friends. If you think a task will take you 10 minutes to do, double it. And be gracious with yourself. Many Pals saw their energy level return in Months 4-8.

Longer recovery time:

We see progress at different rates because we had different procedures done. And we’re different people, at different physical ages and fitness. Pals undergoing longer surgeries involving extensive organ involvement tend to take longer to heal. Most Pals see energy return around Month 4 and “normalness” around Month 8. The Pals majority began feeling like themselves a year post-op. Be patient. Set small milestones for yourself like sitting up in bed without groaning, walking upright (no shuffling) to the bathroom on your own, or heading down stairs unassisted. Push yourself gently but don’t badger yourself. Work within your limitations and take baby steps forward to a long, slow, and consistent recovery.

@&$% happens.

Surgery is a body trauma. Some Pals experience delayed recovery due to complications, predictable or not. Recovery is also a mental marathon. You don’t need to anticipate a setback but understand it’s possible, and that’s ok. On the other hand, seamless recoveries are possible! Be optimistic about your recovery timeline and set realistic expectations.

Mind you, NONE of this may happen to you. We put these items in the “I Wish I Had Known Beforehand” category. The mental game is a huge part of positive recovery scenarios. If we wrap our heads around the surgery and what to expect physically ahead of time, we can divert more mental energy to driving through the long game to LIVING Life Well.

Good luck with your procedure. Know that you are not alone and we have HOPE for you! Let us know how you are doing on Facebook or at a HOPE Zoom meeting.

Have something to add? Send us an email and we’ll start a companion list to the one above for future sharing.

PMP Pals does not provide medical opinions or advice. Please consult your appendix cancer specialist for guidance on these issues and others you may be experiencing. Advocate for yourself by asking questions and getting to know your medical team.

Hope Wrapped Up: Barad’s Blankets

Hope Wrapped Up: Barad’s Blankets

In March 2022, when Lindsay Barad packed for her CRS/HIPEC hospital stay, she thought she over-packed.

The one item that she didn’t bring along was a blanket and her first night in the hospital was freezing! The next morning, her father, Jim, stopped at a local department store and purchased two blankets for his daughter. He found this highly ironic as his business, Barad & Co, is a textile manufacturing company that produces plush blankets.

For the next week, Lindsay recovered in the hospital, wrapped up in those cozy blankets. They boosted her spirits, kept her warm, and helped make the sterile hospital room feel more like home. She found similar comfort with PMP Pals. Both have proven invaluable in establishing emotional resilience for living beyond a rare disease diagnosis like appendix cancer.

PMP Pals is partnering with Barad & Co to send Pals worldwide a gesture of comfort. Jim’s gift is his way of giving back to the community which has helped his daughter, Lindsay, as a patient, and him as a caregiver. Similar to our Bare Bottom Bears Program, Pals will send you a complimentary, cozy, plush blanket by mail, as you head into (or home from) surgery or other challenging treatment. This blanket symbolizes what we want every Pal to know: no matter what you are going through, you are not alone.

To request a blanket, email Lindsay at lindsay@pmppals.net. Include the name of the patient or caregiver recipient, mailing address with zip code, and phone number (if available). Out-of-country requests are accepted, however take a longer time to arrive. Limit one blanket per household..

After you receive your Barad’s Blanket in the mail, send us a photo and tell us how this Message of Hope lifted your spirits.

Pals Perspectives: Racing With Stage Four

Pals Perspectives: Racing With Stage Four

Ariel M. stands in Utah after her most recent running race.Today’s guest blogger is Ariel M. from Salt Lake City, Utah.

If it’s a race, it’s a competition.
If it’s a competition, there is a winner.
If I am racing, I’m competing, and if I’m competing, I’m already winning.

Crowded behind the start we timidly size each other up as we choose the perfect place in line. I’m encouraged by passing people along the way, but I certainly don’t want to get stuck behind a group of walkers using this time as their social hour. So I choose somewhere in the middle. The gun goes off and there is an awkward mix of music with the speakers blasting “The Distance” by Cake and my headphones in one ear blasting “WAP” by Cardi B. Both songs are soon drowned out by the rushing river which we follow through the first 4 miles down the canyon. I feel easy and light on my feet in the beginning but quickly realize it’s because we are going straight downhill. Downhill proves to be a harder impact on my osteopenic knees than the uphill so I lean forward and befriend the help of gravity. Legs circle and tumble one in front of the other, landing on the pads of my sockless feet. My hands flop at the wrists as I relax my arms and let them swing openly. The cold morning air instantly wicks any sweat that beads out of my armpits.

We pass a huge rushing waterfall that flows from about 50 meters up. I take note of its beauty and power while a woman stops to take a picture. I think about what a unique photo opp this is since the road is closed off for the race and I could snap a shot front and center from the middle of the highway. But I don’t stop. Because I’m racing. Still, I appreciate the gentle mist that radiates, touching my face. My mind focuses back to the rushing river and the sound of 10 feet from the little grouping of runners around me. I see the first water station ahead. I strategically situate myself to grab one of the cups, throw a splash in my mouth and dunk the cup into a trash can all without missing a step in my stride. This maneuver allows me to pull ahead of my little grouping and now I’m alone.

I notice a new bunch of runners ahead of me and I wonder how a 10-year-old child and a hobbling older lady have been in front of me this whole time. I analyze their strides and think about how I must look compared to them. Then I remember that the 5k started ahead of us. This makes sense now. I slowly start to pick people off. One at a time, I chase them down building up my fortitude as I do.

This whole experience is a great challenge for the ego– The mediation between the conscious thoughts about how I seem to the outside world and who I really am on the inside. The ego reminds me that I can be many things at once. Competitive and friendly. Aggressive and encouraging. Ecstatically joyful and deeply depressed. All of which I am feeling now as my attention fades from my mental state to my physical one. My philosophical musings get broken up by the lactic acid pulsing around my hips and dull aching in my knees and ankles.

My headphones now play “Higher Love” by Whitney Huston with some sort of techno remix. I tear up and think how I wish someone I knew would be there at the finish line to hold me. Lyrics become like a little prayer:
Bring me a higher love.
Bring me a higher love.

I choke back tears and then think about how I probably just need to eat. I put my emotions in check and my mind turns psychedelic. My breath, while labored, is my consistent anchor, reminding me of the potency of the present moment I find myself in. Regardless of my attempt to feel some enjoyment out of this, my legs are definitely hurting. But I can’t blame anyone else for my suffering because I signed up for this. And for the first time in a while, I feel empowered by my own self-inflicted pain. It makes me feel in control. It makes me feel powerful. I get to do this. I get to run fast down a canyon with strangers shouting their encouragement and ringing cowbells. A smile goes a long, long way in these spaces. A good job or a thumbs up can be all someone needs to remember that they are still among the living and perhaps supposed to be having a little fun. We all cross the finish line by the end of the day so it’s better with a happy face.

An African dance song has me feeling positive with about 5k left to go. After we exit the bottom of the canyon, we take a paved trail through the city that winds towards downtown. The last turn takes us onto a straight path to the finish line. I can see the large banner up ahead, a deceptive 6-8 blocks yet. Not time to sprint, but one can only run faster when the finish line is visible.

These longer races have me thinking that sometimes it’s not about who is fastest or strongest,but it’s about who can withstand the most suffering for the longest period of time. It’s not just my legs that ache now, but my lungs and heart are also struggling to make sense of this intensity. I remind myself that I am good at suffering. Really good, in fact. I have some advantages in that department.

I speed up with every block and I wonder what song will play last when I cross the finish line.

I pass a kid with a Huntsman Cancer Center jersey and I shout “HUNTSMAN! WOOP!” We high five and his dad asks him who that was. He says he doesn’t know. I shout back “I’M A PATIENT! STAGE 4 BABY!” I find it interesting that when I pass people and give them a verse of positivity, it actually makes me run faster. Instant proof that the more we give, the more we receive. We become inspired by sharing our inspirations.

I’m throbbing with encouragement and all in the 30 seconds before I cross the finish line I think:

Ariel M. sports a strongman pose with her belly scar and proud momma grin.I have had 25 rounds of chemo. 
I have had level 10 pain on the way to the ER, multiple times.
I’ve had my abdominal wall sliced open multiple times.
I have lost my ability to ever carry my own children again.
I lost the ability to feed my child on my own terms.
I know what it feels like to lose control of life because of an outside force.
I look death in the eyes on a daily basis and here I am, running all this way, and pretty damn fast! 

The last song comes on, “Dog Days Are Over” by Florence and the Machine.
“Run fast for your mother, run fast for your father
Run for your children, for your sisters and brothers
Leave all your love and your longing behind
You can’t carry it with you if you want to survive.”

I cross the finish line stronger than when I started though now with sore baby deer legs. In my blurry vision, I see families with signs and children hugging their sweaty parents. I hurt. I hurt so good. I feel weepy and happy and nearly hallucinative. I’ll always be drawn back to this feeling and curious about how to recreate it. How to share it. Standing at the finish line on a beautiful sunny day, alone in a crowd of people, I remind myself that I’ve already won…although 4th in my age group isn’t bad for a stage 4 cancer survivor!