Part 8 – A Look Back on my Cancer Journey – “Poster Child” attends Picnic for Survivors

Tootie’s Last Stand

Hey family. I can tell it’s time for an update when the email questions start flowing in. Thank you for your timely concern and prayers this week.

Today’s visit was a long, comprehensive one with stops in all the areas of the cancer center. Had blood drawn, the chemo pump installed, radiation and a visit with the radiation oncologist doc. He was impressed with how minimal my side effects are for where I am in treatment and very surprised that I haven’t had any diarrhea. Gee, and I bought all those Imodium pills in anticipation!  The nurse said I was their “poster child” and whatever I’m doing, keep doing it. Yay!!! She tells me it’s a bonus not to be overweight and have extra folds and skin layers “down under.” Less chafing, I guess. Haven’t heard back on the blood work, which probably means it was still in the normal range. The next couple weeks will be interesting to monitor.

We had an active Memorial Day with a daybreak trek up the Manitou Incline – the mountain scar that boasts a mile long vertical “hike” over railroad ties, climbing just over 2,000 ft. in elevation. The Barr Trail down is about 4 miles from where we landed, so we were out for an hour, 50 minutes or so. Tess and Tim posted their best times ever and our friends also did well. My energy was good, legs strong…just got more winded than usual and had to stop more often. I was dead last, but had the best excuse.  =) It felt great to hike down in the cool morning air. We grilled steaks last night so my iron level should be good. I got a 55 minute hike in at the Garden of the Gods this morning before treatment and have no soreness or stiffness from yesterday’s workout.

A dry mouth has been the first side effect to remind me that “5 FU” is once again cruising around in my veins on a search and destroy mission to attack all cells indiscriminately.  I hope to be on top of symptoms this time. The baking soda rinse I’m doing is to keep my mouth more alkaline and avoid the sores, I’m told.

I may have already mentioned it, but it’ll encourage you to know that anal cancer has no genetic link and carries no risk to offspring or siblings. Colon cancer, on the other had, has strong hereditary ties. My disease is a rare, random mutation and you’ll probably know very few folks in your lifetime that get it – thankfully.

I forgot to mention a particularly funny experience a couple weeks ago at the cancer center. I was lying on the table, getting my radiation treatment and faintly heard a radio station playing in the background. It was tuned to some oldies station and ZZ Top’s  “I’m Just Lookin’ for Some Tush!” was playing. I teased the therapists that they called that in as a request just for me at that time and they about died. They can barely get reception in that room because of all the magnetic fields and solid walls, etc., and because they are in and out of the room all day with patients, the music is mostly just background noise to them. They’ve since unplugged the radio due to more sensitive, elderly patients not really appreciating the music. Oh well. I’m back to watching the monitors on the wall as they control the computers from outside the room and rotate through all my fields. The final treatments will zone in even more specifically – less than millimeters in the x-ray beams – for my last 3 treatments of the tumor and lymph nodes. June 12 can’t get here soon enough.

It’s getting more difficult to sit for any length of time as my bottom feels very sunburned. I’m still sleeping and eating fine, just dread trips to the bathroom. Even the softest toilet paper feels like sandpaper. Tucks are my friend.  Ahhhh…

This Friday is National Cancer Survivor’s Day and the center’s 5 year anniversary. They’re holding a BBQ for patients past and present and their families, so maybe we’ll have a bald head contest or something. I’m kidding. ;)  Tim and I plan to attend. Free lunch – what the heck!

Counting the days and my blessings,

As part of my acceptance of this nasty disease, I have decided to identify with fellow sufferers and attend events that announce to the world, or at least those present, that my life has been altered by cancer. Instead of a bunch of whiners in the “misery loves company” crowd, I have found cancer patients to be some of the most authentic and compassionate folks around. We become instant friends bonded by a common foe, skipping the pleasantries of normal conversation with strangers, and go right to the business at hand. “So, are you through your treatment yet?” “Which doctor do you have?” “Chemo and radiation?” “Just surgery? Oh, lucky you.” “Where’d you get your wig?” “Wow, you lost your eyebrows too?!”

National Cancer Survivors Day is one of those annual events set aside for all survivors and family members. It doesn’t matter if you had cancer 20 years ago or just got diagnosed. This picnic is for you. The local celebration is held at my Cancer Center and they’re serving hot dogs and hamburgers, chips, soda and some ice cream bars…ironically, the very stuff articles on preventing cancer will tell you to avoid. Oh well. Without a vegetable or fruit in sight, my hubby and I go through the long (as in people, not menu items) buffet line and get our food. Not even a whole wheat bun! Sheesh. My radiation technicians have donned aprons and are slinging burgers with the rest of the staff. It’s good to see them outside of their scrubs and having fun.

Tim and I find a cramped picnic table in the shade and settle in with our plates and drinks. As we’re trying to catch bits and pieces of the conversations around our table, I learn that a woman across from us has had cancer five different times and she’s just as cheery as a canary. Others chime in and congratulate her, and share their stories of hope and determination.

I’m feeling more like a cranky magpie. I’m in the middle of my second round of chemo treatment and it has begun to take its toll on my body and my emotions. My chemo bag is slung over my shoulder with 5-FU cruising through my veins. This is the drug that makes me nauseous and attacks mucous membranes. I feel woozy anyway and then have mouth sores to contend with. The burger isn’t looking or smelling real good and after a few bites, the ketchup burns my mouth. I can barely chew and just plop the leftovers on Tim’s plate. The salt from the potato chips also reacts with my lip and tongue blisters and I put them aside. That leaves me with an ice cream bar and water for lunch. It’s a hot day and my wig and wide-brim hat are feeling really itchy. If I were really brave, I’d just warn everyone around me and then take them off. Now that would be a conversation starter – in any group but this! Bald people are calmly milling around as if this is their planet and everyone else is a weirdo.

I can’t help but notice the variety of ages around me. In most family groupings, it’s obvious who the patient is. Mom is wearing a scarf, or dad is looking pale, thin and covering his head with a baseball cap. In other clusters, it’s not so clear. For some reason, I can deal with adults who have cancer, but when I see a small, hairless child with their family members, my heart breaks. If cancer were all about bad choices in lifestyles, that would be one thing. These little ones hardly deserve the hand dealt them and I can’t imagine trying to sort out the dynamics in those families.

Once everyone is ushered through the food line, there is a short program, thanking all the guests and their families and promoting the Cancer Center. We mingle a bit and then decide to go home. While walking to our car, a quick wind comes up and almost takes my hat and my hair with it. For a brief moment, I have a horrifying image of my bald self running down the busy street, chasing my wig – which looks like a squirrel doing cartwheels. The funniest part is that in this group, the scene would hardly get a second glance! I am certainly part of a strange society of humanity.