DAY 7 – STOMA REVISION

Stoma Revision: Fasting for the second operation, started at 2:00am.

I was now counting hours until the new procedure was to take place. The doctor came in to my room while Matt was getting coffee at the cafeteria. I had already hit the PCA (Dilaudid) button twice to relieve some discomfort and awoke from a deep nap, and in her frenetic pace, she began to overwhelm me with scenarios about solving the stoma problem, then laid out my risks and said she would have waivers for me to sign. I felt helpless because it seemed (in my drugged stupor) like a scattered conversation, and like a lot of information was coming at me that I couldn’t keep track of, yet still had to consent to. Then she was gone.

When Matt walked in, I broke down and told him I felt worried now. I recounted what I could remember about the hurried conversation, and questioned whether the doctor was feeling confident about operating on me. He firmly reassured me that the doctor was highly experienced with all things abdomen, and pointed out that I was not in the best condition to be receiving the information and he wished he had been there. I said I would feel better if I consulted with our family friend, a Portland surgeon, Earl.

Dr. Earl Schuman has been in on my story since diagnosis when my parents strongly recommended I consult his expertise. He was very forthcoming with advice and offered his support in any way. I was way more together when I explained the situation in detail, and ask his advice. He listened quietly, then assured me that the complication was very common, the doctor is very adept in her expertise, and everything that was happening was within good reason (he was more eloquent). Voila, 2nd opinion. That set my confidence.

Then, I was headed in…

Then I woke up…

The lights of the OR were garish and the staff flitted around the OR talking like chipmonks. I could barely make out what they were saying, trying to see straight, wanting to meet the strange creatures that swirled around the abyss behind my eyes. It was over.

It all went smoothly, of course. The operation lasted from 1:30-4:00pm. I had a new pain in my abdomen, but felt more in charge of my body than after the first surgery. The deed was done! Now it was on to waiting for the anesthesia to wear off, for the ‘plumbing’ to wake again and for sounds to come from the new stoma!

The rest of the day passed, and the next day I waited, then around dinner time, I heard a toot! I flipped up my hospital gown and looked down. Well, I’ll be.. I saw it move! My dinner was sitting there on the counter, untouched until then, so I grabbed a fork and took pecks of mashed potatoes, chicken, chowder, and chewed really well, then went back to bed to wait. An hour later, more noise, and the bag showed residue. Bingo! More dinner. I ate with glee! It had been 9 days since beginning my initial fast until I can finally EAT!

Hercules! This was recovery!

DAY 6 POST OP – ROLLER COASTER OF HEALING

Roller coaster of healing: I just did a loop de loop.

Let’s see, how much description is appropriate here in a blog with mixed audience… This gets pretty graphic.

The continued blockage from the stoma was making me extraordinarily uncomfortable. Matt came back from his routine evening walk, and decided to do something about it.

We put a call into the surgeon. The nurse reported, “Dr Childs said this is still not out of the realm of normal healing behavior”. Matt crumbled. “I want you to go back and get the doctor on the phone, I want to talk to her right now,” in angry bear tone. She did. The doctor was about to go into surgery on an emergency appendectomy, but she could come to my room in an hour.

The previous day

The doctor had come up with a method to avoid my nausea and vomiting until any swelling within the abdomen could go down, by manually draining the stoma. Using a clear surgical tubing (like that of an IV line) as a stint, Dr. Childs threaded the tubing through the stoma opening and 8 inches into the intestine to draw the fluid into the bag. When this method worked, she endowed Matt with the power to do this for me every time I felt ill. It was pretty gross, but it worked, with some effort. This allowed me to get some much needed protein into my body and some relief. I began taking in a low-residue, soft food diet. Ahhhhhh.

Then problems began. When the food I ingested came to the stoma, it would gum up the tube, then block things up again. Matt would have to remove the tube, clean it out, then reinsert it. (What a guy, SERIOUSLY goes above and beyond what any partner *should* have to do.)

Back to now

This tube was just too small to handle the texture of the fluid coming out, and would get clogged. So both of us losing patience and me in complete misery, Matt looked around to what else he could find to make a better tube to drain. He found some fatter packaged surgical tubing. I looked at this and a BIG question mark came up in my head – will that fit my intestine? Sure it will, he insisted, and began fashioning the perfect stoma drainage tube.

I looked away as he pushed the tube through the stoma, then increasingly through my intestine. Yep, that worked, and fluid came, and came, and came, but ooh, what was it doing to my little intestine!!

Satisfied with the results of the new and improved tube, but me still in major discomfort, the doctor appeared at the door (and a 1/2 hour early!).

That’s where the next adventure began!

Matt explained the events, and Dr. Childs knelt down to take a look at the student’s work. She said, yeah, ok, this isn’t the right tube to be using; let me get an anal catheter tube. She disappeared and emerged again with the exact tube, and did her own work on trimming it to size. Then out came Matt’s and in went Dr. Childs’.

I can’t begin to express my feelings, I am just biting my lip as a witness to all this happening to my body! So, that one didn’t work so well, and Matt’s was the wrong kind of tube. So much discomfort, the doctor advised to revert back to the small tube, and keep manually draining every few hours. She would schedule me for an operation the next day to go in and fix the issue.

That’s where this day ends, and the next adventure begins…

DAY 5 POST OP – RELIEF!

Happy as a hog in mud!

For now, at least. I had my first full plate of eggs and toast! I showered for the first time in a week, got fresh bedding and gown, went for a walk, sat in the sun… I’m fed, ‘drained’, cleaned and feeling blissful!

Again, last night was rough. Beginning yesterday afternoon, the flow of fluids through the stoma slowed then halted. *Oh no*, because this means accumulation and explosion of intestinal fluids, like a grape getting ready to burst. It would be a matter of hours before the excess fluid would be jolted up through my mouth. So, preemptively, I began walking and moving around hoping the stoma would relax and start moving things through again, all the while feeling miserably uncomfortable. NOTHING!!! Stubborn stoma…

About 8:00pm, I’d had enough and gagged myself. That was disappointing because hardly anything came up. Ugh! What do I have to do to get some relief???

Matt was beside himself. Now, a partner who has to stand by and watch his partner go through horrendous pain and discomfort with no resources at his hands can get very stressed, like a caged animal. So he sent the nurse to call my surgeon and ask what can be done for me. The nurse came back with little helpful news. So Matt told her to get the surgeon on the phone he wanted to talk to her right now. She did, and Matt and Dr. Childs had a discussion that imparted how very concerned Matt was about me, I hadn’t eaten, was miserable, etc, and Dr. Childs insisted that this is still normal for me to be feeling this way, that she would come by in the morning to try a different approach to getting my flow going again.

So, many hours of discomfort, fatigue, ache, etc, etc…

In the morning, the usual hubbub began with a vitals check, toridol injection, protonics injection, changing of IV bag, so on, and so on. Then Matt leaves to get his coffee from the cafeteria, and I get up to look out the window. Just then, my surgeon walks in (halleluja!), and I describe yesterday and last night to her. She pokes around my bag a bit, goes over a couple of options, then proceeds to use a clear tube stint to drain the contents of my abdomen into a bucket where she could measure exactly how much had come out of there. More, and more, and more, and more. And that’s when Matt walked in. He jumped in to assist as the doctor’s right hand man. He loved to be involved!

Dr. Childs, like Matt, is animated when she talks. Picture me lying in bed, Matt wearing surgical gloves that are way too small for his hulking hands, standing next to the doctor who is draining my innards. She is talking and gesturing with her gloved hands like she is at a party, bile is flinging and flying in spatters all over me, Matt, my bed, the floor. She did mention that anything in the small intestines is sterile, thank God. And I’m amused by this whole scene because I’m feeling RELIEF!

It takes a while for a tiny tube to drain the fluids out, and in the end, there are 1750 CC’s (that’s quite a lot to be sitting in my bod). We discuss next steps, food intake, and how to keep me comfortable for the rest of my time here. She ordered me scrambled eggs, and a high-protein, soft food diet, then was on her way.

And it was like heaven. Six days of not eating, I think I mentioned before, is frustrating, especially when I’m so close to being ready. I had my first shower, all bedding replaced, my breakfast…

…And I literally felt like rolling in mud! Oink!

DAY 4 POST OP

Ok, this routine is getting OLD!

After a successful night of moving fluids through to my new illiostomy, the stoma has stopped putting out fluids. That means more rounds of throwing up as my normal body processes produce liquid that fills my digestive system to over-full.

Having more energy now, I tried everything recommended to me to get the fluid moving again, including sitting upright, standing more, walking around, even pressing on my stomach. Still no response.

You can imagine this is discouraging to me, as I had such high hopes of healing quickly and leaving here by this time. Medically, there is still nothing worth worrying about, and nothing out of the ordinary, it’s just taking longer than expected. I miss eating food, and crave so many things, but water is my best friend right now, and the other stuff will have to wait.

Dang! My guts are stubborn!

 

DAY 3 POST OP

Good news abounds!

Firstly, last night sucked. I was sick much of the night. I was fortunately able to sleep in good chunks, but was in a state of waiting for the vomit to happen. Apparently something is blocking my stoma! When the liquids produced by my body processes don’t have anywhere to exit the body, they build up and build up, then they are forced upward.

Nextly, my surgeon ordered x-rays to identify what in my belly is making me sick. Turns out a blockage of swelling around my stoma is holding everything inside. This is normal, I am told, and will resolve itself in time.

Then, she comes into my room, manually clears me all out with a tube extended from inside my stoma (very impressive). Matt has become her right hand man as he holds the tube in the bucket for the draining, and she is explaining in great technical detail what she is doing and why. Then her eyes light up like an exclamation point, and she says:

“OH! Good news! The results of your pathology are, no spreading of cancer cells anywhere. You are clean!”

Matt & I had a good cry there, tears of joy! This is what we were going for. What Matt said then: “We’ve summited”.

I am feeling tons better, physically, now, with some cramping in my intestines and some fatigue. My typing is also a bit loopy, I guess the drugs are affecting my faculties!

But I still feel well enough to update you.

DAY 2 – POST OP

Well, healing is full of ups & downs.

Today wasn’t so good, a lot of yucky tummy and long naps. I’ve downgraded from liquid diet to ice chips (booo!). But my vitals are all normal, and all staff confirm that this is normal experience while healing.

I have gone on some walks with Matt through the halls. He is cracking me up! During the walk, we witnessed an irate woman scolding some hospital staff because her husband had a double room, and he was supposed to have a single. They kept telling her to talk to her charge nurse, that they couldn’t do anything about it. Matt said “We don’t even have a room”. She didn’t like that. She said, “Well, there you go then!” and stormed off. So the whole way back to our room we pretended we were wayward patients looking for a room. Every room we passed he said, “looks like this one’s taken, oh wait there’s a bed in the hall, we’re homeless, is that taken?” All the while we are wheeling around my IV.

I just woke from a nap and thought it was morning, and it’s not. So today is an incredibly long day, and I’ve completely lost track of am/pm!

Also, I can’t get a picture of Love. She doesn’t do pictures, but I understand that, so you’ll have to take my word – she is Lovely.

While I can’t leave you a picture of Love, I will leave you with this, post-op silliness, styled by Matt.

Tubes_post_surgery_laughing

DAY 1 POST SURGERY

Hey all! I’m doing as well as can be expected. Surgery went smoothly, no dramas at all. I have a continuous Delaudid IV drip, and a continuous direct local anesthetic inserted by tube to the incisions. I’m not using the pain med dispenser, not because I’m tough, just because if I don’t move, it dont hurt! Actually the local anesthetic works amazingly well.

Little nausea at first, now gone. Matt finally had time to take a dinner break, so I’m just doing a quick update, then going back to sleep, letting you all know not to worry. Matt’s shiny face has made it all easier to deal. Thanks for your wishes, they helps me immensely. Out~

3-DAY COUNTDOWN TO COLORECTAL SURGERY

Hello! Well, it’s 3 days away that I’m expecting surgery to remove a cancerous tumor from my rectal tissue,

And life has never been better than right now.

Last week Matt & I met my surgeon, Dr Tracey Childs. We went over questions and examined the results of the chemo/radiation. We were encouraged by the long-term success rate for this procedure. The tumor has shrunk down to a flat ulcer, which has given me incredible relief from symptoms. The surgery is this Wednesday May 23rd, and I am confidently on track for preparation and even feeling easier about the procedure. Matt will be staying in the hospital room with me. Having Matt here with me is something I am extraordinarily thankful for; he has made the most anxious of tasks easier to cope with. This time has been transformative for us as we realize we need and trust each other in a whole new way.

There will be 3 incisions made, local anesthesia used (I assume I’ll be out-cold, too). The tumor tissue and total mesorectal envelope will be removed and studied for lymph metasteses. My intestine will be crimped and temporary iliostomy bag attached to a port in my abdominal wall. We went over pain management, Dilaudid PCA + Toridol basal drip post-op. Due to acetaminophen allergy, vicodin and norco were ruled out, and Oxycodone was prescribed for home use.

I will be up and walking around by the first night. My stay at the hospital 3-7 days (I’m guessing by Monday or Tuesday May 28 or 29). Once home, I will have home health visits each day as I learn to handle the iliostomy. I will be able to eat whatever I feel like by modifying, ie cooked rather than raw vegetables. A second surgery is to happen in 1 1/2 months (about early July) to remove the ostomy bag and reattach the intestine to my new, improved colon.

I have ordered a neutraceutical alternative med (Capsol-T) which we learned about through Matt’s ex-wife/my guardian angel, Olivia. This is OK with Dr Childs, as long as it will not interfere with the post-op treatments and healing, but she will discuss with the medical oncologist, and doesn’t foresee any problem. It is a derivative of green tea and capsicum (chili pepper) which synergistically works to destroy the protein layer which forms over normal cells and turns off the normal death mechanism of the cells causing them to grow out of control (fascinating, no?). It’s touted as a stand-alone cancer cure. I will use it as a just-in-case treatment after the operation is over.

I am working out daily, creating art projects and going on nice dates with my darling Matt. My hospital stay will be private and quiet to concentrate on healing my way out of there. Your thoughts and encouragement are genuinely appreciated. I am quite scared of what my precious body is about to endure, but my gaze is ahead on the light at the end of the tunnel.

Michelle_&_Matt

Photo by Audrey Rader

Love,
Michelle
Starting Weds: St John’s Hospital (310) 829-5511
2121 Santa Monica Blvd.
Santa Monica, CA 90404-2091

10 DAY COUNTDOWN + ALTERNATIVE TREATMENT

1 1/2 weeks to surgery day, and I’ve found a new alternative treatment

Tomorrow morning Matt & I meet with the surgeon who will be performing my procedure, Dr. Childs. I will be examined to see how effective the preparation treatments were (ie. how fried that MF is), discuss surgical prep, and then we’ll discuss all Matt’s and my questions, like when can I start drinking again, will they provide enough painkillers to share with Matt, and so on.

Also today, I met by phone with a naturopathic medical doctor recommended to me regarding a brand new alternative therapy. Credentials seem to be good, as do her associates and alliances, and she is very excited about this therapy. This is taken as oral capsules and is derived from capsaicin (the hot element of chili peppers) and green tea. Many questions by both Matt & I were all answered. It is purported to be a stand-alone treatment. So I’m back to researching and questioning what I’ve already decided! Does it ever end!!!! No. It does not. The field is continually moving forward. Here is another example, a TED Talk video which Matt & I stumbled on last week.

Wednesday I will attend a webinar about managing colorectal cancer symptoms and treatments. Then next Wednesday, May 23rd is D Day, I go under the knife.

I often think to myself: “Thank goodness for a good, loving partner to be with me on this journey.”

Being ultra-aware of the 10 day countdown, I’m upping my diet of green tea, pepper, fresh veggies, and exercise.

DON’T LET THE EGGS ESCAPE!

Every morning Matt wakes up and says hello to the eggs in my abdomen.

They’re “good eggs,” he says.

As long as they stay in there, they will ALWAYS be good eggs! As soon as they are let out, they will start to suck your blood, your energy, your money right away and for the rest of your life! Then they’re no longer good eggs, they’re kids!

good_and_bad_eggs

At one time we were all “good eggs”. AND THEN WE ESCAPED!

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