Part 3 – A Look Back at my Cancer Journey – PET Scans and Ports

(Note: The following are three excerpts from family email updates 11 years ago.)

Thursday, April 20, 2006

Tootie the Toomah must die!

Rather than conduct a family participation contest to “Name the tumor,” I went with the first one that came to my mind – Tootie. Sorry, no prizes.

Much to my surprise, my surgeon was able to predict my future yesterday after taking a peek inside at my toomah. The ultrasound clearly showed Tootie is like a little iceberg, penetrating below the surface into the surrounding cell wall. Surgery is NOT recommended for this situation since by the time he could cut a safe margin around it to remove it, I’d be permanently incontinent. Sooo, the drug therapy is the best option for our “seek and destroy” mission. 

I’m scheduled to have a chemo port surgically installed (yikes) tomorrow in the hospital under general anesthesia. The incision will be about an inch long near my left clavicle (collarbone) and Dr. R will insert a tube for the administration of the drugs and stitch me back up. The lung is very close to this area, so pray he doesn’t puncture anything. I guess it’s happened once in 10 years to him and if so, I’ll have to stay overnight to re-inflate the lung and then go home. Otherwise, it’s outpatient surgery. The port will be removed at the end of treatment under local anesthesia. I see my oncologist on Tuesday for a complete treatment plan and may commence radiation and chemo later that day or Wednesday. He has to give the green light before anything starts. This is all considered standard “prep.”

The PET/CT scan on Monday did not show cancer cells in my lymph nodes or anywhere else in my body, but it cannot detect small amounts of cancer cells, so my lymph nodes in the groin area will get zapped as well to make sure. 

The alarm went off early this morning and I’m off to the Garden of the Gods for a morning run with a local running group. Thanks again for all your calls, cards, emails and great support. You’re all just precious.

Love, mj


Saturday, April 22, 2006

I know you’re just dying to hear another gross medical story.

Based on how the instructions and description read, I might have titanium in my chemo port. I have a special card to carry when I travel in case I set off any alarms going through security at the airport. That ought to be interesting.

Surgery went well yesterday but took longer than anticipated. A woman Chaplain came in and prayed with us, so of course that made me cry. To keep my mind off the procedure, I took a silly picture with my cell phone of my foot booties and sent it to Tess. The blue sock covers were so long, I could shape the extra fabric up and out into court jester type cones. She thought I was nuts. Once I was in recovery, an hour and 15 minutes later, they took a chest x-ray. All the nurse said was “Take a deep breath,” which I promptly did and then let it out. Nothing about holding it was mentioned, so of course, the picture was blurry and we had to do it all over again. A male nurse named Tom was impressed with my O2 uptake. I was hanging at 100% even with the oxygen tubes out and he said they “never see that” in there, especially at this altitude. If folks reach 80 or 90% saturation, it’s considered good. Yay for runner’s lungs! We also chatted about our golden retrievers as I tried to ignore all the really sick people in beds around me.

(Aunt) Joan came up and stayed with me in the hospital since Tim had to leave for afternoon appointments. The doc told her the first catheter they inserted had a leak, so it was a good thing they tested it. Um, yeah… I haven’t seen the scar yet, but it’s covered by a 2×2 gauze pad and a patch of what looks like clear sticky Saran wrap so I can shower with it. I guess this puppy stays in until a few months AFTER the treatments have ended. They’ll do tests to make sure the cancer is gone before removing it. They’ll check the dressing when I see the oncologist on Tuesday afternoon. The anesthesia made me woozy as usual, but I avoided eating much and made it home without hurling, so that was a success. Ibuprofen has been sufficient for pain and the muscles are a little tight in my shoulder and pectoral area, so ice and some range of motion stretches are helping. Took Aspen (our dog) for a 50 minute hike today – it’s 70 degrees here! 

This should be the last update until Tuesday.

Love, mj


Wednesday, April 26, 2006

Mayday plan

Yesterday, Tim and I saw my oncologist and went over all the test results thus far on Tootie. Nothing was really “new.” It was just a time to review the obvious and ask further questions. I’m only the 4th case that Dr. S has ever treated with this type of cancer in his 20 year career. The entire Cancer Center of 6 -7 oncologists only sees a couple of cases per year, so I feel really special.  

Treatment will commence on Monday, May 1 – my own personal Mayday! It promises to be a very full afternoon, starting with an hour with a nurse on patient education, followed by a 30 minute infusion of Mytomycin. This will be my once and only exposure to this drug. It has a cumulative effect over 4 plus weeks, so I won’t need to repeat it. Then, I get hooked up to the auto-pump of “5 FU,” the second Chemo drug. (Appropriately abbreviated, wouldn’t you say?) This puppy drips into me for 4 straight days and gets removed on Thursday. It’ll be some type of internal IV hookup through my port to a pouch I wear. I might have to wear a “Caution!” sticker to avoid spontaneous hugs or shoulder grabs from well-meaning friends. “Careful! I’m wired and dangerous!” Finally, I will finish off the day with a debut in the radiation chamber for a 5 minute zapping or some such thing. Whew!

On subsequent days (M-F), my only visit will be for a quick radiation treatment. The “5 FU” will be repeated somewhere around week 5. Tomorrow, I go in for a final calculation and x-rays so all my stats will be in the computer and ready to go on Monday. It was Tim’s first time accompanying me to the Cancer Center and though he’s been kept up-to-date all along and has been to other appointments, it was stressful for him to be around all those “sick” people. Like me, he kept thinking “We don’t belong here.” Many times with the earlier visits when I’d get back out to my car, I’d just sit there frozen, not knowing whether to throw up or cry or keep repeating “bad dream…bad dream…revise the ending…”

Folks at work have been great and I’ve worked out a planned leave that I can activate whenever I’m ready. I’ll keep working 40 hours until I can’t sit or have other issues, then go with full time leave. After all the treatments are over and I’m on my way to recovery, I can come back to 20 hours/week and ease back into 40 hours when I’m ready. The total leave time combined is 12 weeks.

I’m going to continue going to the Garden of the Gods training runs twice a week, but now I’m walking. I can’t find a sports bra in my collection that doesn’t press or rub the port, so need to adjust until I try some other varieties. It’s still the best way I know to start the day – tramping around on the trails at sunrise and watching Aspen scare up deer, bunnies, birds, etc.

I learned today that a sweet coworker seriously looked into donating her long dark hair to have a wig made for me! She went so far as to talk to Human Resources about sporting the bald look and they told her it wasn’t “professional” and that she’d need to wear a wig. (Give me a *#! break!) She also learned that no place in the United States makes wigs. I was absolutely floored, touched, blown away, shocked, amazed, you name it…but quickly wrote her to hold onto her locks – my chemo drugs aren’t known for hair loss and it won’t be extensive enough to have that effect (8 days total, split up). Maybe some thinning due to all the stress on the body, but not baldness. Whatever drug they give breast cancer patients is what causes hair loss. She responded with relief, glad that she didn’t go ahead and shave her head over the weekend. Whoa!!!! That’s some friend! Ironically, her hair is long enough to donate 10 inches and still have shoulder length hair, but she was going for all or nothing. Wow. How blessed I am to travel this road with compassionate troopers willing to sacrifice in rare and unusual ways.

Experiencing His peace and ready for the fight,


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