Part 2 – A Look Back at my Cancer Journey – Diagnosis, Tests and Staging

(Note: I just realized that the calendar days from 2006 are the same as in 2011. April 10th was a Monday and Easter was on the 16th in both years. Weird. According to my old day-timer scheduler, I hiked the Manitou Incline Monday, April 10th before going to work and then meeting with my primary oncologist. The logic – if you’re anticipating a rough day, you might as well exhaust yourself before 8 am. It keeps your mind on your sore muscles instead of the news you’re about to hear.)

Here’s a couple of excerpts from my family updates that week:

4/10/2006

I spent a good 90 minutes with an oncology doc today (Dr. S) and he didn’t exactly give a glowing prognosis. I have appointments with a radiology oncology doc tomorrow, a colo-rectal surgeon on Wednesday and a PET/CT scan scheduled for Monday, the 17th. Once all the experts weigh in, a treatment plan will be suggested. My cancer is rare in monogamous females and they don’t know what causes it if you’re not participating in high risk activities that would expose you to HIV and HPV or other STDs. At first they told me it was skin cancer with squamous cells and a very treatable, pea-sized tumor. So, I thought “Great, cut it out, zap it with a laser or inject something and let me go on my merry way.” I guess it’s not that simple. Because it’s so close to the opening, any surgery beyond a surface scraping could damage the sphincter muscles and I would live my life in Depends. Not pretty. A resection of the rectum is what they used to do years back and then folks lived with a colostomy. Again, not a good option. The doc thinks it’s Stage 2, meaning it’s probably penetrated the anal wall a bit, like a wart. I’m the 3rd case in 20 years for this doc. Not feeling real special yet.

The PET/CT scan will determine whether anything has spread to the nearest lymph nodes, which would be in the groin. Therefore, the treatment being considered is using a combination of chemo therapy and radiation. However, my doc wants to await all the results and tests before offering his professional advice and we won’t know those details until next week. This cancer was around long before AIDS took off and they see the best results with the drug treatment, even after new, other meds have come on the market. Once you go through 4-6 weeks of treatment, most people go on to be cancer-free. I guess it could have been growing for the past couple of years, slowly. I skipped going to my “female checkups” for several years, so it may have been detected earlier if I hadn’t been cocky about this aspect of my health. I got the mammograms, just skipped the more unpleasant stuff.

Sooooo, I now have a pathology report and reams of drug handouts and can look forward to mooning a good portion of the medical staff here in Colorado Springs.  I’m still in shock and the whole ordeal seems very surreal. Never thought the “Big C” and me would cross paths and of all places…. please.  All “butt” jokes aside, I strongly recommend you get screened with a scope of some sort.  If I can get this after following a granola-head lifestyle, none of us is safe. The radiation will be 5 days a week for 5 min treatments and the chemo will be a drip thing through a port surgically inserted near my collar bone.

Again, I don’t mean to freak anyone out or gross you out, but there’s just no delicate way to put this. We would appreciate your prayers for the coming weeks and promise to keep you updated. 

I’ve got some busy days ahead, including a previously planned short trip to Vegas with Tim and friends. Yay – another distraction!

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4/14/ 2006

Greetings again. 

Thanks for all your wonderful, encouraging emails, prayers and thoughts. I am truly blessed, and from the sounds of it, drenched in prayer through various prayer chains and groups. Wow. Keep it up as this is the “wind beneath my wings.”

We had a great time in Vegas, but then it’s not hard to beat 3 rectal exams in 3 days, 3 tattoos and more bad news. We saw some shows and had a few amazing meals at fancy restaurants.  I had a wonderful massage this morning in the spa, and last night we had cognacs in the Eiffel Tower restaurant, sharing a Crème Brule, overlooking the water fountain show at the Bellagio. Spectacular!  

The update on the “toomah” (as Arnold S. would say) is mixed. My radiology oncologist is Dr. A – the one from Minot, ND. He talked with me at length about what my side effects would be and how he likes to aim the radiation beams away from private parts to avoid unnecessary inflammation. However, he admitted that my ovaries would probably get zapped in the process and send me into instant menopause. Since he was leaving for vacation soon, they squeezed me in for a “simulation.” Here’s where the tattoos come in. Every single treatment has to be aligned exactly the same, so I was positioned on a table and rolled under some machine that could see calcium floating around in my bowel. (What?) They took digital photos of me and my body position, plotted computer coordinates on all my pelvic body parts and put tattoo “dots” on each side of my hips and one in the middle of my lower belly, all leading to the toomah. They are permanent markers for the technicians to line me up on each time and zap from 3 directions simultaneously. I have moles bigger than these spots, so (son) Dylan would not be impressed.  

My last appointment this week was with a colo-rectal surgeon who wants to do an ultrasound/sigmoid… thingy in the hospital this next Wednesday to see how deep the toomah goes. I guess I’ll be awake. Yippee. He thinks there might be an outside chance that surgery could be beneficial, but didn’t rule out the drug treatments. Lord knows what kind of medical bills I am racking up or what my 5 or 10% might be when it’s all said and done.

The good news is that even if radiation and chemo begin on Monday, April 24 as now planned, I will be able to go get (daughter) Tess in May. That will be about the time they give patients a break anyway. It sounds like the worst part is towards the end of the 4-6 weeks. I will also get a doctor’s excuse to be temporarily exempt from Focus’s pantyhose rule for female employees. I’m told that eventually the radiation will start to burn and blister the exterior skin. Yowch! Dr. A said sitting will be very uncomfortable, so I may consider part time hours or a short leave through the worst of it. 

If this makes your brain hurt, I understand. I drive home in a daze after each of these appointments, trying to absorb what I’ve just been told and sort it out. To be honest, both Tim and I are scared but hopeful, anxious and numb, but still in a bit of denial. Since I have tests on both Monday and Wednesday, I anticipate a pow-wow with my main oncologist toward the end of next week. He will present his advice and a treatment plan at that time. Please continue to pray for God’s perfect will and ultimate healing, wisdom for the doctors, peace for us and a consensus on which way to go. 

Oh, one more cool thing. While I was trying not to itch my nose or move a muscle during the “simulation” thing, I could meditate on some cool poems, pictures and encouraging words that were taped to the inside of the machine over me. One said “If God brought you to it, He’ll bring you through it,” and another spoke of how limiting cancer is…”it can’t remove memories, can’t quench the Spirit, doesn’t destroy relationships, won’t cloud joy, (and a bunch of things I can’t remember) and ended with “…and doesn’t negate the power of the resurrection!” So, there’s your poorly paraphrased, second hand, Easter blessing from me.  =)

Safe in His arms,

mj