AsSeenBySusan

Anus, butt, butthole, asshole, bunghole, rectum, pooper, bum, back passage, tush, shitter, heinie, bum, wazoo . . . and the list goes on of even more graphic and colorful synonyms for that part of our body that few people like to speak about privately, much less in public. (https://www.powerthesaurus.org/anus) 

But since I have anal cancer, I think and speak about it every single day. And I'm learning all I can so that I can share it with others. As I've said before in my blog, learning is my way of having some control over what's happening inside my body, as well as processing the fear and depression that accompany knowing that I really have zero control on how my body will physically react to the chemoradiation. The lists of side effects and personal accounts of suffering I have read are daunting and sound brutal; but for every horrific experience I read, I know there are others who were able to go to work through their treatment or suffered little. I hope I am one of the latter, but am trying to prepare myself in case I am among the worst. It's not easy.

I began my treatment on Monday, October 5, and I just just completed Week 2 on Friday, October 16. Here are some of the facts.

Week 1:

Day 1: Getting the show on the road.

• Blood draw - First thing I had a blood draw and will continue to have one usually every week to monitor the effects of the chemoradiation on my blood numbers.

• Next, I met with the oncology pharmacist to go over the dosage and side effects of the infusion treatment I was to have later that morning.

• Infusion treatment begins. Because the cancer center pharmacy makes the actual liquid infusion as needed, I was first hooked up with an IV saline solution as I waited the 45 minutes. During that time I looked at FB, had a Starbucks bottled mocha, and checked out all the goodies inside my new goodie bag given to each new patient. Lucky me!

Once the medicine was ready, it took only ten minutes to be infused with my one and only dosage of Mitomycin C. Get to work you nasty little bastards!

• Facts About Mytomycin C: I was given an initial infusion of this anti-cancer drug which is designed to cure my cancer. (I like that word, cure.) This medication is specifically compounded in the hospital pharmacy under a special air venting hood due to its toxicity. (Now that's a scary word.) This is an anti-cancer chemotherapy drug classified as an antitumor antibiotic. It works by interfering with the function and structure of DNA, which prevents cell division and causes cell death. However, because it is non-discriminatory and because all cells are constantly renewing themselves, healthy non-cancerous cells may also be destroyed. (That's the bad news.) Most importantly, this chemo med is a radiosensitizer that essentially boosts the impact of the radiation, which is the "big horse" in this fight against cancer.

• Possible side effects: The list is rather long of the side effects associated with this powerful drug (think fast-talking disclaimers on TV drug ads), but the pharmacist highlighted only a few for me to be aware of. My plan is to be as proactive as I can to avoid or limit as many of the following side effects:

1. Neutropenia - the decrease in white blood cells that can lead to a decrease in my body's ability to fight infection. In that way being in Covid self-isolation is good because the few times I do go out, most people are masked. Also, I was told it can take 4-6 weeks for the full effect of the decreased blood count to register with this medication, which explains why in the weeks after treatment ends side effects can be worse than during treatment. 
2. Anemia - This is a low red blood cell count and usually manifest itself later in treatment as increased fatigue.
3. Mouth sores - This starts with dry mouth or canker sores which if severe can interfere with eating.
4. Nausea - A very common side effect, but with prescription meds can be dealt with.
5. Hair loss - Unlikely head hair loss, but possibly down below.
6. Fatigue - Predicted to have good days and bad days, but I got a big thumbs up for swimming laps everyday as long as I can. I've also met with a physical therapist who is designing a program for me to keep active once I cant swim.
7. Localized pain - This is mostly a side effect of radiation to be discussed with my radiation oncologist as there is little I can do proactively to prevent it.

• Facts About Capecitabine, my other cancer drug: This is the oral chemo med that I take every day that I have radiation. Also known as Xeloda, it, too, boosts the effectiveness of radiation and comes with its own set of side effects including Neuropathy/tingling of extremities and Hand and Foot Syndrome, dry, peeling and sensitive skin on palms and soles. So far, I have escaped both, but I am prepared with the right creams and ointments just in case. 

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• Radiation -  After my infusion I was taken to get my first dose of radiation. As a result of the simulation CT scan a week earlier, a form had been made to position my lower body in the exact same way for my daily radiation treatments. So I hopped on the table, dropped my panties to my ankles, and lay still while two radiation therapists adjusted my body this way and that. (There is no such thing as modesty when having anal cancer. Plus, I had two babies in my 30s, and I'm 70 years old now, so who cares?) 

• When my position was perfectly aligned with my three dot tattoos, the huge radiation machine started. It emits a high pitched buzz during its three passes around me on the table. And after five minutes max, it was all over. One down, 29 to go.

Week 1, days 2-5 & Week 2, days 6-10: 

• With my one and only big blast chemo infusion behind me, my Monday-Friday schedule for six weeks includes twice daily chemo pills (Capecitabine) taken at home with meals, and radiation therapy at the Cancer Center. Saturday and Sunday are my free days. (YAY!) Even though the Cancer Center is right here in Walla Walla, driving to and from the Cancer Center takes longer than the radiation itself. 

• Every Thursday I also meet with my radiation oncologist to discuss any new or emerging side effects. In fact, on any day that I meet with her or my medical oncologist, I always bring one of my three patient advocates. They act as my second set of ears as well as my scribe to take notes so that I have a written record of what was said. The record also allows Doug to read what's happening at my appointments and is not dependent on my memory alone.

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So far it seems I have been fortunate to avoid most of the side effects, and those that I have experienced have been abated with the appropriate medication. I am ready for whatever comes next. 

AsSeenBySusan

An Old Take on Nutrition

Or Eat Like It's the 1950s

Note the apple or peach which is not allowed on many lists in its raw form
because of the skin. And apples should really be cooked or made into
applesauce. I wonder if apple pie counts as okay?

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As with any illness, good nutrition is essential before, during and after treatment. My diet before my diagnosis was not optimal, but I did try to eat an assortment of foods high in fiber and low in bad fats. It included seeds, nuts, berries, whole grains, raw or steamed veggies, avocados, fresh fruits, lean meats (mostly chicken) and low fat dairy. I also tried to limit my sugar intake despite having a definite sweet tooth. 

Imagine my surprise when I was told by the nutritionist at the Cancer Center that the prescribed diet for patients with anal cancer is low fiber/low residue. This translates basically into how I remember eating as a child -- a high calorie diet of white flour, white rice, sugar-coated cereals, over-cooked  frozen veggies, and head  lettuce  salads.  The science behind it is that these foods are easy to digest and are  gentle on the intestines and bowels which will be brutally assaulted with chemo and radiation. I was told that such a diet also helps keep nausea and diarrhea at bay which are very common side effects of treatment. 

Who knew that eating Frosted Flakes, skinless baked potatoes, Wonder Bread sandwiches, overcooked veggies and white pasta would be good for me in 2020?  And those avocados that I never knew existed growing up and that I now eat with regularity? Turns out they are also forbidden on my cancer fighting diet. I have yet to know why, but I intend to find out.

Here is a short list of other foods on the good/bad lists I've read online. I've discovered that not all lists are exactly the same which makes me wonder. So I intend to ask the nutritionist when I meet with her in person.

• Apples are bad, but apple sauce is good. 
• White and sweet potatoes are okay, but with no skins. 
• Only eat the tips of asparagus.
• Nut butters are okay and a good source of protein, but no nuts or seeds of any kind including sesame or poppy seeds on white flour buns or bagels.
• All juices must be pulpless.
• White rice, refined pastas, and flour tortillas are allowed, but no quinoa, bulgur, polenta or corn tortillas.
• White flour pancakes, waffles and French toast are on the good list, so I can still have breakfast for dinner or whenever I want. (Real maple syrup is also okay.)
• Canned fruit or well-cooked or canned veggies are okay but no strong tasting, gas producing veggies like broccoli, Brussel sprouts, cauliflower, or onions.
• Tomatoes must be skinless, so I guess harvesting my Grape Juliets and Sweet 100s is over.
• Fruit jellies must contain no skins, and no to marmalades. So no to Bonne Maman preserves and welcome back to Welch's grape jelly.
• No strawberries, raspberries or blueberries, but ripe bananas are alright.
• Melons are good.
• So are eggs--boiled, poached, scrambled or fried.
• Ground or well-cooked tender beef, pork, lamb, chicken, turkey or fish is fine.

In addition, two weeks ago I arranged to receive Meals on Wheels during the weekdays since I anticipated my already low interest in cooking would be even less what with treatment.  And since Doug doesn't cook, I wanted to make sure he got at least one hot meal a day regardless of how I was feeling. We've been getting them for the last two weeks, and interestingly they seem to fit the profile of a low fiber/low residue diet. Fortunately for me, Doug's an easy keeper and he eagerly eats his, and sometimes mine.  So that's working out well. 

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NOTE: I took screenshots of the lists below, and I have no idea why the blue COVID-19 label is on them. It doesn't have anything to do with the lists themselves, so please ignore.

https://www.webmd.com/ibd-crohns-disease/low-residue-diet-foods#1

https://www.cancer.org/treatment/survivorship-during-and-after-treatment/staying-active/nutrition/low-fiber-foods.html

AsSeenBySusan

 Happy Birthday to Me

I breathed a sigh of relief seeing this package on my doorstep when I returned from swimming Saturday morning. It contains my chemo meds which had to be ordered from a specific mail order pharmacy in Portland. This was the last piece of the puzzle to fall into place to make sure my treatment starts as scheduled on Monday. Even though my birthday isn't until November, I consider this an early birthday present.

These pills along with radiation are supposed to kill the cancer cells in my body. I will take eight pills a day, four in the morning after breakfast and four in the evening after dinner, Monday through Friday, along with radiation on those same days. This protocol will go on for six weeks or 30 treatment days. It's important to take the pills within 30 minutes of eating, which means I have to eat breakfast, which unfortunately right now is often minimal. That will have to change.

The meds also can wreak havoc on other healthy parts of my body if I'm so unfortunate to experience the common side effects. That's one thing with anal cancer treatment; no one can accurately predict who will suffer side effects and who won't. That's why the pharmacy sent me a gift assortment of remedies to treat the most common side effects. An early birthday present; how nice!

The dental package is to assure good oral hygiene during treatment. Kid's Crest and an ultra soft toothbrush is in case I get mouth sores from the chemo pills. They can be so debilitating that eating becomes difficult if not impossible. Hmmm, I can't wait! 

The Udderly Smooth hand and body cream is in case I suffer from hand and foot sores. It starts out as sensitive palms and soles of the feet and can progress to peeling, raw skin and severe pain. They even advise against holding garden tools or kitchen utensils too tightly as the pressure may aggravate the skin. No thank you!

The anti-diarrhea Loperamide tablets are for the obvious. Good nutrition in the form of a low fiber/low residue diet may stave off this side effect, but it's not guaranteed. Considering the area being radiated, over the six weeks of the treatment that area becomes tender and raw making elimination uncomfortable at best and excruciating at worst. And having had hemorrhoid surgery a year ago, I know all too well this kind of pain. Again, it's a big, fat no thank you from me!

The last set of pills are for the opposite side effect -- constipation. It seems a person can suffer from this alongside the aforementioned.  Not a comforting thought! And with the possibility of prescription pain meds needed during treatment, this side effect can be exacerbated. Keeping well-hydrated can often offset this symptom. But I've been there, done that when I broke my wrist and had surgery. Not again, please and thank you!

However, the anti-anxiety bubble wrap included as packaging is by far the best, best, best gift. I'm saving it for when I really need it . . . or until the end of treatment when I can celebrate completion and a cure. Stay tuned.

ASSEENBYSUSAN

 When Anticipation Becomes the Agony of Waiting 

Or More Lessons to Learn

PART 1, THURSDAY: 

Waiting has always been hard for me. I was a sneaky present looker when I was a kid waiting for Christmas. But the year I knew what all my presents were before Christmas Day, was the last year I peeked. It wasn't fun anymore not to be surprised.

And I've written about waiting for the trips we plan in advance and countdown the days until we leave. That's the good kind of waiting as I pack and repack, read the guide books over and over, and imagine what we're going to see and do. 

But waiting for my cancer treatment to begin has become old and agonizing. Every single thing takes an authorization from my insurance company: before I can have a CT scan or MRI, or meet with the nutritionist, or schedule proactive physical therapy, or receive my chemo meds from an authorized mail order pharmacy. And even then, with all the i's dotted and t's crossed, it seems I still have to wait longer to meet with one more hospital pharmacist to tell me what I already know and to sign a waiver saying I was given the information. 

The confusing part to me is that everything I have read talks about the standard chemo-radiation treatment being a 5-day-a-week protocol, with Saturdays and Sundays being off days. That certainly implies a Monday-Friday schedule of radiation with oral chemo meds. And yet, I'm stymied why my treatment may be put off by a whole week only because I have to meet with the hospital pharmacist who, at the earliest, is available next Tuesday. It's stuff like that that's driving me crazy and causing me stress when one day could make the difference between starting and waiting.

I recognize it's hard for me to give up what little control I have over my cancer. I want it out of my body, and I want to start now!

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"Nevertheless, she persisted." -- Elizabeth Warren

"Know when to hold 'em, Know when to fold 'em." -- Kenny Rogers

PART 2, Friday: 

How things can change in 24 hours . . . when one becomes proactive and self-advocates. 

The Serenity Prayer has served me well throughout my adult life. At first, however,  I understood it to mean stand back and let God or one's higher power take control. But not being particularly religious, it was difficult for me to let everything go and rely on a spiritual entity to take charge. Yet, in time and with life experience, I learned that indeed it takes wisdom to know the difference between turning over control and being proactive and advocating for myself. Especially because I am a woman. (But that's another subject for another time.)

My cancer is what it is. I accept that I am one of the unlucky ones to have it, and I don't question the why or how.. But my treatment is my choice to some extent, and I'm not comfortable leaving it all up to someone else or to a higher power as for the timing. Some things are simply earthly matters and shouldn't require divine intervention. 

The events of Thursday and Friday confirmed that belief. Despite thinking I had all the boxes checked on my treatment BINGO card, there was one more step that had to be taken that no one had told me about until now. I needed to meet with the Cancer Center pharmacist and sign a waiver.  But he was gone by the time I called on Thursday, so I was offered an appointment to meet with him the following Tuesday. I knew that wouldn't cut it and would only delay the start of my treatment by a week. No deal.

So Friday morning I called the Cancer Center at 8:00 sharp only to be told the pharmacist was "unavailable." Nevertheless, I persisted. I explained to the woman on the other end why I was calling and of my concern. Clearly she was a very good listener, because by the time I finished, she said I would be receiving a call back, and maybe several, because she was sending my concern to a number of people. YES! This is the kind of person I want on my team.

Cutting to the chase, I received three calls shortly thereafter. The first was from the chemo nurse to schedule me for Monday morning to start my first and only chemo infusion.The second came from the radiation nurse scheduling me for my first radiation treatment following the chemo, And the third was from the scheduling nurse verifying the first two appointments. 

BING! BANG! BOOM! It was done and all because I didn't give up and I persisted in asking questions. And to the Cancer Center's credit, everyone I spoke with was kind and compassionate and clearly working in my best interest, albeit at my tempo. I held my cards until the right time, and now I feel comfortable folding. 

Only two more days until the real work begins.

AsSeenBySusan

 Scan Results

I knew when I was told at my first visit with my radiation oncologist that my cancer was a Stage 1, that the diagnosis might change. At that point I had had only the anoscopy in August which had diagnosed the 1.5 cm sessile lesion as cancerous. And since then I had read enough to know that one test does not an accurate staging make. But I hoped.

I was also told that I'd get a PET scan that would reveal if there was more cancer in my body and inform the oncologists how best to treat it. After a week's wait, however, I was told that the PET was denied by my insurance; so instead, I was scheduled for a pelvic CT scan with contrast and a chest MRI, which purportedly would give the doctors enough information they needed to proceed with chemo and radiation treatment. Another week passed before I completed those scans. And then another day's wait until I met with my medical oncologist to review the results. I was not prepared for what he said.

My cancer is now Stage 3, is slightly bigger at 2.5-3.0 cm, and is growing down into the tissue below it. I was stunned. The tears welled in my eyes until they spilled down my cheeks as I listened to the doctor explain the treatment protocol. Again, I had a friend with me taking copious notes, so I could allow my tears to flow as I listened and asked follow-up questions. The statistics for this stage of anal cancer is 70-80% for a cure. The doctor thought that was positive; personally, I would prefer a higher percentage. 

After that it was a matter of more waiting in the days ahead for him to submit a referral for treatment to my insurance, and to order the prescription for my oral chemo meds from a mail order pharmacy since local pharmacies do not stock them. His estimate for when treatment could begin was a week or so, but in counting the days myself, I knew he really meant 7-10 days. 

More waiting. More tears.

My deepest appreciation to my friend Jackie Scholl who sat by me, taking notes and comforting me on this very trying day.