AS SEEN BY SUSAN

 

2020 has been all about Plan B, or C or X, Y or Z. Heck, even the tropical storms and hurricanes have had to resort to using the Greek alphabet to name new storms in September. Nothing is at all normal about this year, and it continues to stifle all the best made plans.

We were supposed to be on a cruise to the Baltic capitals and St. Petersburg, Russia. But the Coronavirus squelched those plans, along with a November trip to Egypt and Jordan. Both trips have been rescheduled and/or revamped for 2021. Plan B.

Good thing, too, because with my cancer diagnosis, we would have had to cancel them anyway but without all the perks that came with the Covid-19 cancellations and rebookings. The companies still want our business. Lucky us, right? So rather than travel, I get to go through chemoradiation. Should I call this Plan C for cancer or is it still Plan B? In either case, it really couldn't have happened at a better time considering we are stuck at home. I know, count my blessings!

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Plan C continues to unfold, just rather slowly for my liking. (I know, I'm not in charge!) Tuesday the 22, a week after meeting with my oncologists, I had my first CT. Or so I thought. It was really a simulation CT to position my body so that it will be in the same place for future radiation treatments. The preferred position is prone, which means on your stomach, but I never lay on my stomach. It hurts my back and then my nose/sinuses get stopped up. That's why I dislike massages; I am so uncomfortable that I can't appreciate the massage. 

But this was even worse as I was supposed to lie face down on this board made with cut out spaces for my belly and its innards to fall below the line of radiation. But with my head where it was supposed to be, my boobs were being squashed by a hard bar underneath. Everything hurt and I couldn't imagine myself being in this position for 28 radiation treatments. That's when I lost it. All I could say through my sobbing was, "But it's square and I'm round." And indeed it was and I am. 

To their credit, both nurses and the male attendant were all very compassionate. One nurse in particular, hugged me tight until I was eventually able to stop crying. Then my radiation oncologist appeared, and I talked and she listened and assured me that there was a Plan B for positioning me on my back for radiation. In fact, she explained that many people of a certain age can't tolerate the prone position. If the certain age means old, I qualify. Thank goodness for Plan Bs.

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To say it was a trying day is an understatement. And I know there will be more. I know I won't ever be a hero and muscle through without flinching. Because I'm a crier and a talker. That's how I process. But this incident left me with a good feeling that I am listened to, I am valued as a person and a patient, and that I can put my trust in my medical team. And that's Plan A+. 

As Seen By Susan

Lifelong Learning the Hard Way

"You have been through a lot." 

"I am sorry you are here." 

These were the first words spoken to me by my oncologists Tuesday at my first two appointments at the Cancer Center in Walla Walla.

The fact is, I was initially taken aback by the first statement until I realized my medical oncologist had read through all my medical records that went back over a year to when I had had a routine colonoscopy. Unbeknownst to me, the potential seriousness of the lesion that was detected and mentioned almost as an afterthought along with the words from the gastroenterologist, "See you in ten years," was lost on me. Yet, it prompted a hemorrhoidectomy a few months later in which the lesion was removed and biopsied with the diagnosis of "pre-cancerous." I recall full well the audible sigh of relief I felt in my surgeon's office knowing that all the pain I had suffered during the recovery had been well worth it to avoid a brush with cancer. And even at my 6-month post surgery check-up, I thought it was standard preventative procedure to be referred to a colorectal specialist in Spokane for an anoscopy. But when the doctor there called me ten days later with the pathology report of cancer, I was shocked. I cried. Ugly crying. How? Why? What next?

So yes, I guess I had been through a lot, even without knowing, and it felt comforting to hear my new doctor acknowledge it.

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Then how disarming is, "I am sorry that you're here"? Talk about hitting the nail on the head. A cancer diagnosis was right at the top of my list of things I never thought I'd hear. So sitting in the small examination room waiting to meet my radiation oncologist was second on that list. But with those simple words, she also acknowledged my anxiety and affirmed my right to be fearful, or maybe even a bit terrified. 

So these are the facts I learned from the first meeting with my medical oncologist, Dr. Orville Batson:

• Based on the biopspy from the anoscopy procedure in Spokane, I have a 1.5 cm. lesion in the anal canal which is squamous cell cancer most commonly associated with HPV (human papillomavirus). Even though I am unaware of ever having HPV in my body, and having tested negative for it as a pre-anoscopy procedure, that's the likely cause. Just like chicken pox, those nasty viruses stay in your body and can cause serious illnesses later in life. So be sure to get your 11-12 year olds vaccinated!

• To determine the stage, I will need to undergo a PET scan to confirm whether there is cancer elsewhere in my body. The results of the PET will also determine the course of treatment regimes. Cancer that is localized or regional (as in it has spread to the nearby lymph glands) is treated differently than cancer that has spread and is distant. Dr. Batson thinks it is localized, but he has to make sure before designing a chemo treatment.

• Assuming the cancer is localized or is only regionally spread, the combination of chemo/radiation is the standard treatment. Known as the Nigro protocol, it consists of radiation therapy combined with 5-FU and mitomycin-C chemotherapy. 5-FU is usually administered through an IV over the course of four to five days at the beginning of treatment and repeated after four to six weeks. I will also be taking an oral/pill-form anti-cancer medication at home, five days a week, for 6-7 weeks which will run concurrent with radiation. ( I asked if 5-FU meant Five Fuck Yous to cancer. It doesn't, but he chuckled.)

• I won't even go into the possible (probable) side effects right now other than to say I most likely will NOT lose the hair on my head. So that's GOOD news!

And these are the facts I learned from the first meeting with my radiation oncologist, Dr. Kristen Riegert:

• To my question of, "Is this cancer rare?" she answered: "Radiation is the cornerstone of treatments of anal cancer, so radiation specialists see most of them. Virtually all anal cancers stem from HPV which a lot of people have had and which usually clear, but sometimes they manifest in cervical, head or neck cancers, or anal cancers." My response: Who knew? 

• The goal in treatment is to, "1. Cure the cancer, and 2. Preserve the function. That is why surgery is not the first treatment of choice. Because of its location, if the cancer is cut out via surgery, function is most likely lost." Good to know!

• "Also, surgery is a salvage which happens in a real minority of cases." Phew!

• When I asked what is the difference between a lesion and a tumor, this was her answer. "A lesion is the same as a tumor and it's the same as a cancer mass." Also good to know.

• The PET scan will give an "eyes to thighs" view to look for an errant cancer cells that are 1cm or more in size.

• The MRI gives a good tissue definition of the lymphatic system. This will give the best images for her to start making the plan where to target the radiation.

• During radiation, the highest amount is aimed at "ground zero" with it gradually lessening as it moves out from there. 

• Yes, there's a myriad of unpleasant side effects to radiation treatment, but I will hold those thoughts for now and not get the cart before the horse.

• But the best, best, best news of all was that as of right now, and unless the scans show differently, I have small, Stage 1 cancer.  And that is GOOD!

So if you are wondering how I am able to capture both doctors' words as direct quotations and remember all of these facts, it's because I have the most stupendous, speedy note-taking, clarification-asking patient advocate at my side. Kathryn Barron please take a bow. I couldn't do any of this without you. I love you!.

As Seen By Susan

Shortly after I publicly announced my cancer diagnosis on Facebook, I received the above photo from a friend in Las Vegas. I had never seen the purple and green ribbon before, so naturally I Googled it. Little did I know there were so many ribbons and colors for every kind of cancer  imaginable. 

But I still had to do a little searching for the meaning of the purple and green. 

I finally found it.

But in the end, ALL the colors matter because . . .

F  *  C  K          C  A  N  C  E  R  !

Counting Down the Days

I'm naturally an anticipator. I like having something out there to look forward to. This mindset naturally implies that that something is good. Traveling is a perfect example. By nature, the trips we have taken in the last few years required choosing an itinerary and making a deposit months, if not over a year in advance. That makes for a lot of waiting and envisioning and planning and building excitement. It's all good. 

Right now, however, I'm waiting for a totally different reason. With time on my hands and no clear answers from my doctors who I still don't meet for a week, all I can do is read and research. In fact, I've created a manila folder in my brain, labeled it in black Sharpie - Anal Cancer - and am now filling it with information, anecdotes, relevant personal experience, and questions. Lots and lots of questions. And it's not all good.   

I'm also the kind of person who prefers to know the worst case scenario and be pleasantly surprised if I don't experience the same. Two important times in my life I've been told vastly inaccurate versions of what to expect: labor is only mild discomfort; and zero, nada, zilch about the pain after a hemorrhoidectomy. In truth, both hurt like hell, the latter surgery being even worse than childbirth. And so in my research about anal cancer -- its treatment, the side effects, and personal anecdotes by others -- I want to hear it all.  Some of it scares the sh*t out of me, which is an intended pun since that is precisely the painful problem that those with anal cancer must suffer through. Not a single person downplays that reality, yet many give me hope saying it's doable with the help of creams, bidets, sitzbaths, and pain meds. I've duly noted it all, even with links to Amazon for specific products.

To be honest, since my diagnosis I have been suffering from anxiety, being worried about the worst that could happen. Several people have suggested laying off the research, but that's just not me. So I'm now on anti-anxiety meds, taken as needed, which now that I have them, I've only taken two. I know my anxiety is situational, trying to deal with all of the unknowns during this waiting period, so in that respect it's short-lived. 

For now, I'll while away the days hoping for the best but preparing for the worst. 

 2020 - The Year That Keeps on Giving

AUTHOR'S NOTE: Heretofore, this blog has been about my travel adventures with my partner Doug. Beginning with this piece, however, I will be blogging about a different sort of adventure -- fighting cancer, As Seen By Susan. From all that I have read, it will be an adventure of a lifetime, but not in the fun sort of way. In the end, I hope to be able to go back to blogging about far away places and trips we have scheduled for 2021 including Egypt, Jordan and Alexandria. Stay tuned.

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Looking back, I didn't think much about it at the time that I was sick on New Year's Eve and January 1 of this year. I just knew that I was disappointed to miss our tour of the ghats along the Ganges in Varanasi that was supposed to be a highlight of our trip to India. But I recovered, and we finished our Heart of India tour as well as our five-day extension trip to the state of Kerala in southern India.  Then we began our journey home in the wee hours of January 7, arriving back in Walla Walla by mid afternoon on January 8, very tired and with a lingering cough and an eye irritation, but home. 

By February rumblings of the Coronavirus had me wondering if I my cough was symptomatic of something more serious, but with no fever or other symptoms, the doctors at Urgent Care didn't seem concerned. And as my  symptoms abated, COVID-19 arrived in the states and with it the new normal of stay-at-home orders, masking, self-isolation, and quarantine.  

It was also during the first few months of isolation that I had my follow up appointment with my surgeon who had performed my hemorrhoidectomy the previous fall. At that time, she had removed and had biopsied a lesion that was found during a prior colonoscopy. The pathology report came back as negative for cancer, which was a relief. However, at my six-month checkup she must have seen something suspicious, as she referred me to a colo-rectal specialist in Spokane. 

Covid-19 restrictions plus Doug's rescheduled hip replacement surgery in June put my anaoscopy procedure off until August 13. And then ten days later I received the results: I have anal cancer. 

The diagnosis took me by surprise. I have always thought of myself as "healthy and husky," just as my childhood pediatrician Dr. Mason had described me after one of my many summer camp physicals. Also, there is no history of cancer in my family, and I have led a mostly healthy life being a non-smoker and a light drinker. 

Nevertheless, I have cancer. How I got it is now not as important as how I am going to get rid of it. Since I don't see my new doctors at the Cancer Center here in Walla walla until mid-September, I've been busy reading and developing my background knowledge of the disease and its treatment. Believe me, it's not for the faint of heart. But as a result of my research, I am also putting together my support team including a nutritionist, a social worker/counselor, and my patient advocate who can ask questions and take notes when my brain might be otherwise bogged down in the emotion and physical distress of fighting this disease. 

Plus there's my partner Doug, who will be my closest emotional support person. I've been at his side for several health events, so I guess now it's his turn. 

So it seems 2020 just keeps on giving. As Covid-19 keeps us trapped inside our homes, fires rage across the west, and hurricanes spin off the oceans into the coastal cities and across neighboring states; as social and racial injustice is protested in small towns such as Walla Walla and big cities like Portland, Seattle, Washington D.C. and others across our country;  as students and teachers return to school in a variety of ways never experienced before; and as our country fights to preserve our democracy and its Constitution, I will begin the battle of my life.

2020, you may have thrown me a curve ball, but I am not out yet. In fact, I have just begun to fight. 

SCENES FROM THE LAND CRUISER--MODES OF TRANSPORTATION

Getting Around Arusha and Vicinity

Whether by foot, bicycle, moped, motorcycle, tuk-tuk, dala dala, bus, car or truck. . . the roads are always busy with traffic coming and going.

First there are the human-powered vehicles.

This is a favorite capture of mine, through the window of our Land Cruiser as we were driving to Arusha.
A Maasai warrior pedals on his bike talking on his cell phone with his buddy seated behind him holding a
young goat on their way to market. Note the iconic Maasai walking sticks tucked across the bike frame.

Bicycles are not just for carrying people; they are also used to transport goods to town or to home.

These dried stalks may be food for cattle or used as a fence around a house.

Collecting firewood is typically a woman's job, but this man may be taking this bundle to market to sell or trade.

Then there are the mopeds and motorcycles. . .

In fact, this is a fairly typical scene in Arusha illustrating several modes of transportation.

Note the lovely flowering trees in this city center scene.

Motorcycles and street vendor carts abound in Arusha.

But when your cow or other animal is too big to carry on a bike or motorcycle, you walk it to market.

 . . . and the passenger vehicles. 

A motorcycle, tuk-tuk, SUV, passenger bus, and our safari vehicle all share the road on the way to Arusha.

A colorfully painted dala dala

A 4X4 is a good vehicle to handle all the roads in Tanzania.

A passenger bus with an assortment of baggage including a car tire and a basket of live chickens.

Another dala dala with the words BORN HERE HERE painted across the windshield

And one of our three safari vehicles parked at a money exchange stop.

And finally there are the trucks.

Trucks are the heavy haulers that carry big loads from Point A to Point B. We saw them on the highways and also on the narrowest back roads where there was barely room to pass. 

Like the dala dalas, the cabs of some of the big trucks are brightly painted.

But wait, I must not forget the carts.

Wheeled push-carts are the back bone of local market sales and delivery. And like most developing nations, they are seen everywhere stacked with fresh produce, building and agricultural materials, small animals, clothing, plastic buckets, propane tanks, trees and bushes, or whatever else must be transported from here to there.

LEARNING AND DISCOVERY IN ARUSHA-PART 3

A Dala Dala Ride to Remember

We keep moving forward, opening new doors, and doing new things, because we're curious 

and curiosity keeps leading us down new paths. --Walt Disney

After a morning of serious learning and discovery, Lenny decided it was time for us to rub elbows with the locals. So for all of us who wanted to, he gave us each a shilling piece along with instructions to take a ride in a dala dala.

As described in Wikipedia, "Dala dala are minibus share taxis in Tanzania. Often overcrowded and operated at unsafe speeds, these minibuses developed as a response to an insufficient public transport system in the country." 

Oh my! Had I read this description before my trip to Tanzania, I might not have taken Lenny up on his offer. But since I only read this as part of my post-trip research for this blog, I was game for a new experience. Clearly there is something to be said for 'ignorance is bliss' when traveling.

Lenny explains how to ride a dala dala

Dala dalas get their name from the slang term for five Tanzanian shillings ("dala" for dollar), the bus fare in the 1970s and 1980s when these vehicles started operating.

Now a standard trip costs 400 shillings (25 cents), although the fare can be more if you're going a long distance.

Typically, dala dalas are bigger than a tuk tuk but smaller than a standard passenger bus. We saw them in sizes ranging from an extended 18-passenger van to mini bus size. Regardless, they are generally crammed with as many people as possible and then some with children seated on laps and people standing, albeit crouched. 

All dala dalas are brightly painted with designs that apparently indicate the route along with seemingly random English words taken from the movies, TV, or pop-culture. I am not sure if they have meaning other than being 'hip,' but Lenny said the owner/drivers loved to one-up each other with the latest colorful signage.

This dala dala even has room on the roof to carry a large sofa. Hopefully,
it's a purchase by a passenger, not extra seating for overflow passengers.

The game plan was this: because there were nine of us, we divided into three-person teams; Lenny would tell each dala dala driver where we were to get off; and then we would exit the dala dala and wait for our tour bus to come along and pick us up. While on the dala dala, Lenny asked us to start a conversation with the people around us. That sounded easy enough, except I speak no Swahili, and I imagined most of the locals riding in a dala dala spoke little or no English. 

The first dala dala stopped in front of us with only one person exiting and three of us wanting to get on. But having experience getting on the Paris Metro when full, I wasn't going to let a visibly packed dala dala scare me off. Clutching the coin in my hand, I squeezed myself on board, eyeing a potential empty seat in the back row. Doug followed me and sat on a jump seat in the row in front of me while a man, woman, and child entered and squeezed in between Doug and the left window. Our third traveler found a space toward the front as seen by the shock of blond hair visible at the shoulder of the standing woman. Then we were off. 

The little boy appeared to be mesmerized by Doug. And I was mesmerized by his big, brown eyes. . .

. . . and his cute orange A-B-C cap.

As per Lenny's instructions, I tried talking to the people around me. To my left was a mother and daughter, both dressed in black burkas. The young girl's face was showing; however, I could only see her mother's eyes. While her daughter giggled with her hand covering her mouth, I couldn't tell what the mother was thinking as I tried in vain to explain my presence. 

However, to my right sat a young man dressed in a dapper shirt, tie and jacket who did speak English. I found out that he was an Information Technology consultant on his way home from work. I spoke with him until I realized we had been on the dala dala for quite awhile and became concerned about when we were supposed to get off. A few stops later, our third traveler shouted back to us, "Now!" and we squeezed past the other riders and exited handing our shillings to the conductor.

Then we stood for what seemed like a very long time watching more dala dalas stopping to unload and take on new passengers, until eventually three more OAT travelers disembarked and then three more. Within minutes, our tour bus stopped and picked us all up. 

Chalk up another exciting and successful learning and discovery adventure!

I especially liked this man with his color-coordinated yellow shirt with the yellow lemons he was selling. I asked if I could take his picture, and he willingly flashed me the peace sign.

Each dala dala is owned by the driver. The routes are regulated and fees are pre-set. Typically, dala dalas pick up passengers at central locations; however, they will also stop anywhere along their route to drop someone off or allow a prospective passenger to board 

But the dala dala is not a one-man operation. In addition to the driver, there is a conductor called a mpigadebe.  The conductor gets out at every stop and tries to convince passers-by that they want to ride the bus. He hits the roof of the bus when it's time to move on. And he collects the fare as each rider disembarks.