AsSeenBySusan

 What a Difference a Day Makes

Moving on to Plan B? or C?

As I wrote in my last blog, I was to begin a clinical trial for an immunotherapy drug on Thursday, December 17. I had showered the night before and picked out my clothes to present a holiday spirit when I arrived at the Cancer Center. This outfit included my red/black buffalo check dress, black leggings, and my aqua green puffer vest.  The holiday piece de resistance was my Santa Claus headband which I had saved from last year's water aerobics class. If nothing else, I would be sure to get Best Dressed for the day. 

But at 8:00 the morning of, as I was dressing for my 8:30 appointment, I received a phone call from the director of the clinical trial informing me that I no longer qualified to be part of the study. Just like that, I was out.

Apparently it was because my radiation amount didn't meet the minimum level for the study. To be honest, I stopped listening at that point. It was just noise. But I got the message. Don't bother to show up because I was disqualified. 

My reaction was swift and emotional. Disappointment, sadness and incredulity erupted in tears and words. I felt lost and adrift, like a rowboat cut loose from its mooring and was now floating out to sea. It had not been an easy decision to sign the consent forms, but once I signed and dated the multiple forms, and later found out that I was in the treatment arm, I was all in. I was ready to take an active part in my treatment while hopefully helping the greater good. 

Yet, it was anger that really got to me. I didn't understand how after all the discussions I had had with my medical oncologist where he claimed that I had "checked all the boxes" to qualify, could he have missed this important criteria? In a telephone conversation with him later in the morning, he tried to pass the buck to others, but I reminded him that for me, his name was all over my consent forms as my go-to person, so he was my connection to the study. And it was his responsibility to make sure I had indeed checked all the boxes. Obviously he missed one. As a result, I felt betrayed and lost my trust in him.

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But that was then, and this is now several days later. I've come to terms with the disappointment in my own way. I'm not a believer that God has a plan for me; nor do I believe that it happened for a reason -- such as I may have had adverse side effects, it may not have worked as they thought, you know, trying to see the positive in the negative. I do that sometimes, but not this time. Instead, I've decided that it is what it is. (I know, these words have a negative connotation after you-know-who uttered them about the number of dying Covid patients.) But that's how I feel about it. It happened. Now what am I going to do?

And what about my anger? I'm turning that into action. I'm reading about what scans and tests I need in order to catch any outlying spots of cancer that may occur in my body. Through my personal experience I have learned that the medical community in Walla Walla is not adequate to diagnose and be proactive with people like me with anal cancer. There are no colorectal specialists nor oncology gynecologists. That explains why after being referred to doctor after doctor here at home because of hemorrhoids, I was eventually referred to a colorectal specialist in Spokane to correctly diagnose my cancerous anal lesion.  However, this should have happened more than a year earlier when the gastroenterologist saw a lesion during my routine colonoscopy. But instead he told me, "See you in ten years." 

This November I had the opportunity in person to remind him of his words and tell him that the anal lesion he found in me was now Stage 3 anal cancer for which I was being treated. All he could say was, "I'm sorry." But if telling him my story makes him rethink future diagnoses, then that will be a good thing. 

 

AsSeenBySusan

30+ Days Into Recovery/Healing

Decisions, Decisions

The first 30+ days of my recovery has been everything I was promised. A roller coaster of emotions and energy from full on happy to be alive, to the depths of wanting to die. Neither extreme lasted for long, thank goodness, with most days feeling somewhere in the middle between not-so-good and not-too-bad. Fatigue and ennui bordering on depression have been the biggest hurdles, but then I can't totally blame my cancer. COVID isolation, the on-going post-election insanity, the shortening of daylight hours combined with days of rain and/or fog, and then the still undiagnosed illness of my canine companion Scout -- these all have contributed to my sadness and depression for good reason. 

I also experienced late-stage radiation side effects that I mistakenly thought I had escaped during treatment. Lightly peeling skin turned into open, weeping sores in my groin which both hurt and itch terribly. (Thank goodness for creams and salves.) But it was only after my scheduled appointment with my radiation oncologist on December 9 that I was assured it was all part of the normal shedding of radiated skin in the process of healing. In 1-2 weeks I should be better down there. Yeah!

But I also had a big decision to make earlier in the week which I had been putting off since my first meeting with my medical oncologist in September. Did I want to be part of a clinical study that might prevent the recurrence of anal cancer? Pages of Patient Advice and Rights along with detailed lists of possible side effects admittedly put me off. But a call from the Cancer Center reminded me that the window of opportunity was closing quickly, and I needed to make a decision. 

Walking up to the Cancer Center on Tuesday to meet with my oncologist, I had decided that I didn't want to go backwards in my recovery and experience new fatigue, nausea, loss of appetite and possibly worse. But I also knew that in this randomized study I had a 50/50 chance of not being in the test group, which would be okay since I still would be observed with tests and scans, I just wouldn't receive the drug. And then, I was also aware that even if I was put in the treatment group, I could drop out at any time I wanted. So each step up the stairs and down the hall to the exam room, I was still weighing my options. 

To his credit, my oncologist was able to answer all of my queries and allay my fears to my satisfaction. He also answered all the questions of my friend and advocate Kathryn who was with me and who I trust implicitly. So I signed the consent forms. Nevertheless, the voice inside my head still told me that I might not even be put in the treatment cohort, and even if I was, I could opt out any time. 

Later that afternoon, I received a call telling me that the computerized randomization process had selected me for the treatment group. And ya' know what? I was happy! Relieved! And pleased to think that my participation might help others fight anal cancer down the line. 

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So what is this clinical trial? In short, it is testing the addition of the drug Nivolumab after previous therapy for high risk anal cancer. People who have anal cancer that have a high likelihood of returning after standard chemotherapy and radiation are eligible for participation in this research study. So I guess that's me, along with 344 other people taking part in this clinical trial.

The purpose of the study is to find if adding the study drug Nivolumab after standard chemotherapy and radiation will prevent the anal cancer from returning. Nivolumab is a drug that may turn the body's immune system to attack any cancer cells that may remain after chemotherapy and radiation. This clinical study will allow researchers to find out whether this different treatment is better, the same, or worse than the usual treatment for anal cancer. The use of Nivolumab in this study is investigational for my type of cancer and is not approved by the FDA. 

That said, while the addition of Nivolumab may help prevent my cancer from returning, which is the potential upside for me, it could also cause a number of side effects, which is the obvious downside. Just as I am beginning to feel better, I may have side effects that (hopefully only temporarily) set me backwards. And just because I had very few side effects from my standard Mitomycin and Capecitabine chemotherapy doesn't mean I'll react the same to this new drug. Therein was my hesitation to join the clinical trial. But that's behind me now since I already signed the consent form. Forward, march!

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For those interested in more of the details, here's the protocol for the treatment group that I'm in. Beginning this Thursday, December 17, I will be administered Nivolumab by an intravenous (IV) infusion which takes about 30 minutes. This will be repeated every four weeks. Treatment will continue for a maximum of six months or six doses of the drug or until I have severe side effects, my cancer returns, or I decide to stop. (That's my escape clause if it gets too bad.) By my calculations, I'll be done mid-May. 

Assuming I successfully complete the Nivolumab treatment, my oncologist will continue to monitor my condition for up to five years. The first post-treatment visit will occur six weeks after the last dose of the drug. Follow-up visits may occur every 2-4 weeks if I have adverse reactions to the drug, or with no adverse reactions, every three months for the first two years and every six months for years 3-5. That includes the standard after treatment care but also includes some additional CT scans or MRIs and bloodwork. The additional aftercare is another carrot that enticed me to join the study. 

Of course, with taking any drug comes the possible side effects. The most common side effects are fatigue, loss of appetite, nausea, diarrhea, and dry mouth (all do-able and mostly treatable) More increasingly serious side effects include lung problems, colitis, kidney failure, heart problems, swelling of the brain, blindness, paralysis, or death. As scary as it sounds, it's a lot of necessary CYA. (Think the fast-talking, tiny-print drug ads on TV.) Nevertheless, keep those positive thoughts and prayers coming, please. 

Plus, if side effects become too serious, my medical oncologist can take me out of the study. I can also be removed if my health changes and the study is no longer in my best interest, new information about the drug becomes available, or I don't follow the rules of the study. (Rules? Who said there were rules?) 

So that's what December and the first part of 2021 have in store for me. I'm hoping with the arrival of the Coronavirus vaccination and a new administration in the White House, two of my depressants will be eliminated. As for Scout, we're still trying to find out what's wrong with her. It may mean a trip to WSU Vet School, we just have to wait and see. It's kinda like me; I'm just waiting to see if my treatment worked. Head down. Keep pedaling.

Afterword: I am dedicating this blog post to my long-time friend, Andi Holcomb Gardner, who I have known since since junior high school. She was diagnosed with pancreatic cancer about the same time I was diagnosed with my anal cancer, at the end of last summer. I have thought about her every single day since I knew that my diagnosis came with an 85% curable rate; whereas, her diagnosis came with a death sentence. Andi passed on December 8 with her two daughters at her side. I HATE f*cking cancer!

 

AsSeenBySusan

Life After Chemoradiation

On Becoming a Thriver

It's been two weeks since I had my last chemoradiation treatment for my anal cancer at St. Mary's Cancer Center in Walla Walla. I looked forward to the day like a child crossing off the days until Christmas. During that last radiation session, I  silently counted the three 60-second arcs of the machine while apparently keeping time with my right big toe. "Please keep still," a voice boomed into the room! I guess my excitement was hard to contain as I had never been similarly chastised before. 

Next, I received my certificate of completion and then rang the ceremonial gong at the front desk. Yay me! I had done it.

Outside my friends were waiting  to have a small yet socially distanced parking lot celebration. Included were my three trusty and loyal patient advocates -- Kathryn Barron, Jackie Scholl, and Suzanne Towery -- as well as the Conductor of my Meal Train, Carol J. Lee. And of course, my beloved partner and soulmate, Doug. Kind words and oceans of thanks were exchanged along with a few tears on my part, and then we went our separate ways. On to recovery.

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At my last appointment I was forewarned by my radiation oncologist that I may go through a period of depression in the early stages of recovery, not unlike post-partum depression. She also warned me that my physical symptoms may stay the same or perhaps get a bit worse as the chemoradiation stays in the body doing its magic for some weeks. But in time, I should begin to feel "better."

One of the misleading side effects of my kind of cancer and its treatment is that I really never showed outward symptoms that I was undergoing chemoradiation. Because I kept my full, bushy white head of hair, I never looked like a balding chemo patient. But little did people know that I was losing hair down below, which ultimately left me with a partial Brazilian, kind of a final parting gift. Ole'. I also timed my public appearances to when I was feeling secure in my bowels and could be on my best behavior. Only Doug got to see and hear the other me, moaning and screaming in pain as I tried to poop for the umpteenth time that day. I often felt like I was pooping multi-faceted diamonds when in reality it was only one or two, teeny tiny soft turds. 

Fortunately, I was given a product by my radiation oncologist that helped some with the excruciating anal pain due to radiation sores. It's a paste containing zinc oxide, calamine, menthol and other ingredients that I liberally applied several times a day to my anus. I also used Aquaphor liberally along the creases between my legs and abdomen. I have to say I was reminded yet again of my Big Ride Across America where I was one of several self-proclaimed "Slather Sisters" who liberally applied Bag Balm in the nether regions to prevent saddle sores and the like. Twenty-two years later, I was still slathering. 

And apparently, it worked because I was one of the fortunate ones not to experience extensive radiation burns across my abdomen and buttocks. Like a very bad sunburn, the skin blisters and then peels leaving large areas of open wounds that are painful and  ripe for infection. The only peeling I experienced was in the inner creases of my legs and in my butt crack, and that I only noticed in the first week of recovery. It was more of a nuisance than a pain so I  consider myself very lucky on that account.

Another on-going side effect is the deep aching of my tailbone extending outward across my buttocks.  No upright sitting position is comfortable for very long, with the way-back position in my lounge chair being the most tolerable. However, the  best place, since we don't have a sofa or couch is in bed on my left side. And then I go to sleep.

But the depression; it has really hit me hard. I frequently have to force myself to go swimming at the Y three days a week despite the overwhelming positive effects. It's only in the pool where the water envelopes my body that  I feel a freedom from the gravity on land that constantly pulls on my anus and groin. Plus, I feel an energized after-effect that lasts for several hours.  But then the blahs hit me again. Hard. My attention span is diminished so reading or trying to concentrate on a project is worthless. My body is fatigued and lethargic, so all the cleaning and organizing projects that have been left undone continue to stare me in the face and overwhelm any motivation I might have. Thank goodness for the Meal Train, or Doug and I would never eat. Even then, doing the dishes becomes a Herculean task some nights. 

I have been assured by other anal cancer thrivers that this feeling is perfectly normal, and it too shall pass. So I try to lean into it and be gentle on myself, which for me is not as easy as it sounds. Waiting has never been my strong suit. 

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But wait, there's more! Besides the more common side effects mentioned above, there is a host of other effects that anal cancer survivors commonly experience in the weeks, months and even years after the end of chemoradiation treatment. All are a result of a build up of scar tissue as a result of the radiation. As they say, radiation is the gift that keeps on giving. These effects include but are not limited to the following:

• Bladder dysfunction
• Bowel dysfunction
• Chronic diarrhea
• Hormonal changes
• Vaginal stenosis
• Anal stenosis
• Lymphedema
• Pelvic bone fragility
• Hairline fractures and/or brittleness caused by the radiation
• Long-term fatigue
• Small bowel obstructions

With most of these side effects, it's a matter wait and see. There is little a person can do proactively to prevent any of them. But one thing I can do is Pelvic Floor Therapy. This specialized physical therapy can support the pelvic organs, assist in bowel and bladder control, and treat chronic pelvic pain. Who knew? And we're lucky enough to have such a specialist right here in Walla Walla at Providence St. Mary's Outpatient Rehab. My first appointment is scheduled for next week.

I'll also start vaginal dilation with my radiation oncologist with my next visit with her in December. This is the treatment for vaginal stenosis, a narrowing of the vaginal canal caused by a buildup of scar tissue.  A similar condition is anal stenosis. Both are treated with dilators which are medical grade, hypoallergenic silicone tube-shaped inserts that come in a set of increasing sizes.  Beginning with the smallest size, you insert a lubricated dilator and hold it there using pelvic floor muscles for 5-10 minutes. This isn't a sex toy; rather, it's painful therapy for the private, tender areas of the body that have been ravaged by radiation. 

The bottom line is that in order to kill the original cancer, other healthy body parts take a hit. I'm quickly discovering that the chemoradiation was the easy part. For me, the real work is now in recovery and healing. 

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Another important thing I have learned from this cancer journey is how little I knew about cancer. I still know next to nothing because my cancer is different from every other kind of cancer. And every person is unique and experiences his or her cancer in their own way. My objective in keeping this blog is to process all the information I have been learning about anal cancer. As my radiation oncologist said early on, I'm taking the condensed course in what took her and the radiation therapists years to learn. 

In writing about my experience, I am in no way diminishing the experience of every other cancer survivor who may read this. Rather, I speak from my experience only in an effort to understand and to teach. My heart and my admiration go out to each and every person who has suffered and survived this dreadful disease known as cancer.

 

AsSeenBySusan

Life Is Like a Bicycle Ride

Weeks 3-4

Last century, in the late 1990s, I took up road cycling. My neighbor and teaching colleague, Ann Weatherill, had been doing long distance road cycling for years, and after questioning her sanity many times, the cycling bug bit me, and she became my inspiration and hero. I started out slowly, adding miles weekly, until that first summer I decided to try my first sponsored ride -- Walla Walla Wheatland Wheelers' 4,000 in 40. The ride began in Pioneer Park and went to the top of Tollgate Pass in Oregon, a distance of 40 miles with a climb of 4,000 vertical feet. Of course, then there was the ride back to Walla Walla which was all downhill, sort of. Suffice it to say, I eventually made it home on my own strength, tired and sore but feeling like a champion.

But what I learned on that ride about eating, hydrating and building strength and endurance by riding miles and miles every week served me well. In fact, by the following summer when I received a flyer in the mail to participate in the Big Ride Across America in the summer of 1998, I didn't think twice about signing up. This was just the challenge I needed.

For over a year I trained for the biggest physical challenge I had ever embarked upon. The ride was to begin in Seattle and end in Washington D.C., 47 days and 3,254 +/- miles later. During that training year, I also changed my eating style, added regular weight training to my schedule, and in the process lost 70 pounds. By June 1998 I was as ready as I could be.

My physical preparation served me well over those thousands of miles despite days of cold drenching rain, unrelenting sun, side winds that tipped my bike and head winds that made every pedal forward an extra effort. And snow! Yes, snow on a pass outside Helena, Montana. But there were also plenty of days with perfect temperatures, tail winds that pushed me along, and enough hills and flats to vary the terrain.

But the long hill climbs and mountain passes were what really tested my metal. Some days it was nothing but one long climb. So I quickly learned when that happened to recite this mantra: head down and keep pedaling. 

And therein was my epiphany that life is like a bicycle ride.

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Some days life brings me good weather and a tail wind. I am grateful. Other days, annoyances and inconveniences are like a headwind and make moving forward hard. It's then I remember to put my head down and put one foot in front of the other, one step at a time.

But then there are the major life challenges that drop me to my knees. Death. Divorce. A life threatening illness. These life events are like the mountain pass when it snowed and iced over the road. Or pedaling in the 100% humidity in western Pennsylvania when some angry passing motorist threw an empty glass bottle at my wheel. Or cycling the interminably long, flat concrete road into Billings, Montana and counting the bump-bumps every time my wheels went over the miles of seams. Head down, keep pedaling.

This anal cancer is now my biggest mental and emotional challenge of my life. While extremely painful at times, I can honestly say riding my bicycle cross-country remains my biggest physical challenge, followed by backpacking in 2005 for three days out of the Arctic National Wildlife Refuge to the Bearing Sea.

But I am not finished with my treatment, and I am told, it still can get worse. So far, however, I consider myself lucky. That said, I have no appetite at all, and my mouth tastes like cardboard. The BEST news is the meals from my Meal Train have provided Doug and me with hot, home-cooked meals filled with LOVE. Without them I'm afraid we would be on a rotation of Progresso Chicken and Rice soup, Frosted Flakes and Cream of Wheat. Bland and easy to digest. 

And the fatigue. All cancer patients know of this side effect which at times is overwhelming. But since exercise is so important during chemoradiation, I am trying to keep swimming. I missed last week because of bowel issues, but did go Saturday. It felt good. I'm signed up for three days this next week. Head down, keep pedaling.

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NOTE: The following may be TMI for some.

The hardest and most painful part for me has been elimination. With anal cancer, the radiation targets the anal canal, the anus, the perineum, with lower doses still hitting the vagina, the colon and the lymph nodes along the crotch. Radiation is like a severe sunburn, and as you can imagine, these nether regions rarely, if ever, see the light of day. So as they burn, they tend to blister, open and peel. I've been lucky, so far, to avoid that, but there's still a possibility. My pain, however, is at the anus as a result of new or old hemorrhoids that make eliminating a  painful challenge. (I was supposed to be rid of them as a result of a previous surgery, but that's another story.) I also have a constant nagging feeling of having to poop, called tenesmus. As a result, I am at the toilet 8-10 times a day.  https://en.wikipedia.org/wiki/Rectal_tenesmus This makes making daily plans difficult because I don't know how long I have in between successful attempts. And if I do go out, I make sure I know the location of every public toilet. 

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If you happen to see me at the YMCA, you may be surprised that I look quite healthy. I still have a my full head of white hair, although it needs cutting, and since I'm not in pain, I physically look quite normal. You may notice, however, a slower pace some days and a bit of a mental fog (chemo brain is real), but all-in-all I'm hanging in there. And when and if it does get harder in the coming days/weeks, I'll simply put my head down and keep pedaling. Life is like that.

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. 

*     *     *     *     *

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.