Not a Mummy – Me in a “Mask”

I promised somebody I would show what my daily process of a few minutes looks like, as pitiful as I look shirtless. One of the young technicians made these three (requested) shots of me screwed to the table for the radiation treatment. I show up each morning by 11:45 and I’m walking back to the hotel by 12 noon usually. Quick and mostly painless (though the mask is really tight on my face). It appears more scientific than human, but believe me, the staff are all so friendly and nice and do their various jobs very proficiently. And they all shift to English when I walk in, though not their native language. Amazing! And I use my elementary Spanish with them as I am able, though not necessary here like at the public clinics and hospitals.

One outside person told me that this clinic is equal to Mayo Clinic in the states for Radiotherapy. I feel like I’m in very good hands. My radio doctor will conference with me every Tuesday until finished and work with me on any side effects, etc. And a nurse is always there plus other doctors always in the building. A very professional place that in fact does remind me a little of being in the Mayo Clinic with my brother Jerry, just not as big! 🙂

Notice the Screws holding me down with the mask.
Feels like being a mummy! 🙂
Everything must be perfectly lined up for radiation in the right places.

Are we having fun yet? Sure!

3 Days Down and 30 More to Go!

🙂

¡Pura Vida!

Big Tree & Tropical Gardens

I am so glad I chose this Best Western Plus San Jose over the two other options, if for no other reason, for the beautiful surroundings. I’m including two galleries below, one of landscapes and one of flowers, with more about the hotel itself in another post. The feature photo is the big tree from the breakfast dining patio (also seen from my room) and the shot below is from the Jacuzzi.

View from the Jacuzzi
Continue reading “Big Tree & Tropical Gardens”

My Tribal Mask

My Personal Radiotherapy Mask

Well, tribal in one sense, with only certain ones of us in the Radiotherapy Tribe! 🙂

This first day of radiation treatment took longer because I had to meet with the nurse to explain all the side affects and things I can do to make it go smoother. Then they had to readjust the mask made more than a week ago which is a mold of my head and shoulders. They screw it down to the table over my body and I can’t move my head at all. This is necessary to get the radiation in the right places which afterwards Dr. Bonilla showed me computer graphics of my head & neck and where the radiation is scheduled to go. Amazing how targeted they can be when I am in forced stillness! 🙂

Once I’m set up, the machine scans my head and neck from two angles, 33 seconds each time. This will continue for 33 days which now boosts me up to 6.5 weeks. I am now scheduled for 11:45 AM each day, Monday to Friday.

After today’s treatment I walked the 6 blocks back to my hotel which I love and will tell you about later. I looked in the mirror and was surprised that the left side of my face and head was a little pink, even on the first treatment! I have an expensive “Radiocare” lotion I will use on my face to help avoid the “sunburn effect” and sure enough, the pinkness went away with the first usage of the lotion. I also must wear a wide-brimmed hat and avoid all sunshine on my face and neck. I jokingly told the nurse that I would just make a larger “Covid mask” to cover my whole head! 🙂

Another “new normal” being developed here! 🙂 ¡Hasta mañana!

¡Pura Vida!

Earth Day Hope

Wherever there are birds, there is hope.”

~Mehmet Murat ildan

And of course this is just one of the many birds who have brought hope to my terrace here in Atenas, Costa Rica – A Keel-billed Toucan in my Cecropia Tree (link to my Keel-billed Gallery). There is hope that the big rich nations are waking up to global warming and their long-time destruction of our planet. And there’s hope in the battle against my destructive cancer. Below is my update of activities that finally make it possible to begin Radiotherapy Monday.

Second Covid Shot this Morning

Quick and painless. I walk into the temporary vaccination clinic ahead of my 8 AM appointment, paperwork done quickly with shot even quicker and I was out of there before my appointment time. 🙂 I walked home, having taken a taxi to the clinic. With my knee no longer hurting I’m back into walking more and hopefully every day during radiation, though I will have to wear the big wide-brimmed hat they tell me! I must avoid sun during radiation.

Tomorrow Morning Stitches Removed

Tomorrow (Friday) morning at 9 AM I see my Ophthalmologist in San Jose who will remove the two stitches from my left eyelid and supposedly this is going too help me use my left eye for longer periods of time without an eye patch. So far I’ve gone up to 6 to 8 hours at a time without covering it. Reading tires it out more than general activities like kitchen work or even a little TV. I seldom watch more than an hour a day, if that much. For Earth Day I found a special on the internet streaming channel Curiosity Stream for wonderful nature documentaries and signed up for a year at just $10 or $2 more than one month of Netflix here. I will probably drop Netflix again. Seen all their documentaries I care about and the rest is mostly junk.

Got off subject there! 🙂 I assume the eyelid will stay partly closed now when the stitches are removed since she did something to make the top and bottom grow together at one corner. But, FYI, my left eyelid will never blink again or fully close.

UPDATE: 23 April – She did not remove the stitches today. She first said she would remove just 2 of the 3, leaving one to help protect from radiation. But because she used nothing for pain, I flinched and she said she would not remove them at all for now, saying I have a “low tolerance for pain” and I think she has a low sympathy level! 🙂 She was also very painful to me at beginning of surgery. So now she will wait until after radiotherapy and try again in June. Hmmm. 🙂 Permanent stitches? — But the Good News: both eyes are doing very well and she is pleased with the surgery results. I’m already using my left eye more than 6 to 8 hours a day, so progress even if I have a low pain tolerance! 🙂

Radiation Starts Monday

This coming Monday, 26 April, I get my first radiotherapy in San Jose and daily Monday to Friday for six weeks or through June 4. They were not comfortable with all these other overlapping medical appointments plus needed the time this week to prepare for my targeted treatments. She is studying all the reports on both of my left cheek surgeries, the earlier “skin cancer” one and the big one March 15 including biopsies, etc. to help her target all remaining bits of possible cancer. My future is sort of in her skilled hands. 🙂 Dr. Bonilla is both an oncologist and radiologist and my surgeon says the best here.

I’m still bargaining with hotels near the radiation center but hoping for the Best Western with four nearby restaurants and hope to schedule that today. I plan to spend Monday to Thursday nights there and back in Atenas Friday-Sunday nights. I will be giving regular updates from San Jose starting next week which I hope will be interlaced with some nature reports also! 🙂

¡Pura Vida!

Don Carlos

The honorific title of “Don” (“Doña” for older women) started in Europe for royalty and leaders of honor in Spain, Italy and Portugal, while today in Latin America it is a term of respect and endearment for senior adults. Since I started my cancer treatments, most of the different doctor offices call me Don Charlie, Don Charles or now my oncologist office lady always calls me Don Carlos. It is kind of nice to have the respect shown and helps to keep you from feeling sorry for yourself. 🙂 Respect for the elderly in Cosat Rica is everywhere!

Report on Today’s Two Doctor Appointments

Like with so many doctor appointments, both gave follow-up appointments with the biggest being with my Ophthalmologist who is doing minor outpatient eye surgery on my left eye this Friday right after the dentist appointment. It is one of her standard procedures to partially close the eyelid that won’t blink or close on its own. It will be down to a kind of permanent squint so the eye doesn’t dry out and water so much like now AND most likely I will no longer need to wear an eye patch! AND I will be able to see with both eyes (particularly helps depth perception). Both eyes are still 20/20 vision so I still don’t need glasses, though over-the-counter reading glasses (magnifying) is okay and sometimes needed for someone my age. I’ve especially needed them while reading with one eye only the last couple of weeks. And maybe the best part, her special ophthalmology operating room is in Ciudad Colon on the Atenas side of San Jose, meaning a shorter drive! 🙂

It was important to squeeze this in before radiation starts to avoid more damage from the radiation. It is like they are rebuilding my body.

And the oncology surgeon just checked the incisions and swelling which is visibly going down now, but can take a month or more. This skin is less and less sensitive in that area. But it could take up to a year before back to “normal.”

¡Pura Vida!

Another Gauntlet of Doctors

This happened the week before my cancer surgery and now it has started again two weeks before the beginning of my radiation treatments – tiring – hard to keep up with – but necessary!

1. Today, First of 3 Dental Appointments

Those who have experienced radiation know that you cannot have any dental work done after radiation for a long time, especially no tooth pulled because the radiation does something to keep the hole from a pulled tooth from healing. Hopefully none will need to be pulled! 🙂

  • Today (Monday) – teeth cleaned and checked out with two tiny cavities found visually that she will fill this Friday. She also ordered a panoramic X-ray of my teeth from the Dental Radiologist one block away where I went next to make my appointment.
  • Thursday – Teeth X-rayed when I will take the resulting X-ray back to Dr. Karina for her to study and see if there are other problems we should take care of before radiation.
  • Friday – I return to Dr. Karina for the two known fillings and anything else she finds on the x-rays.

2. Tomorrow, Tuesday – Appointment with Ophthalmologist

This is Dr. Raquel Benavides whom I saw in the hospital and Dr. Hernandez (my oncology surgeon) recommends to see if anything can be done to help my eyelid that will not close now or blink. He thinks she can “stich” the eyelid mostly closed to a sort of squint so that I will not have to keep it covered and can still see with it. Hmmm, I’m not convinced of that yet but maybe she will convince me or have some other solution other than an eyepatch. I’ll find out tomorrow and expect almost anything to come after radiation is completed.

3. Tomorrow, Tuesday – Appointment with Oncology Surgeon

This will be my 3rd “follow-up” or “post-op” visit to the surgeon, Dr. Christian Hernández. He wants to check on the healing of the long incision and the swelling on my left face and neck. Plus he said he wants to hear what the Ophthalmologist says. 🙂 He must not have a mouth specialist friend who can fix one-sided smiles! 🙂 He encouraged me earlier to go ahead and shave on the left side, but because it is tender and sensitive I only lightly run the electric razor over the left cheek and even more lightly on the left side of my neck which is more swollen and more sensitive. So I am not back to normal yet, skin-wise. The pain is less now in the ear and jaw, but still some and I’m now taking an over the counter acetaphetamine locally popular called Panadol.

4. Wednesday – Seeing my Dermatologist as Pre-scheduled

The last time I saw him, Dr. Roberto Gamboa, was when he sent me to Dr. Hernández to take care of the tumor which I will now have to tell him came from that skin cancer he removed in MOHS surgery which is supposed to mean they got it all. Well . . . cancer roots go deep! At that last visit he also treated a little skin cancer on my upper lip which was a black spot on my lip in some of my cancer selfie photos. (I was putting a very expensive anti-cancer medication on it once a day for 20 days.) That scab is gone now and supposedly the little cancer there. Of course he will be checking for any more and he often burns bumps off my skin with nitrogen. He is also my “traveling buddy” who likes nature lodges all over Costa Rica like me. He is the one who recommended Bosque del Cabo Lodge where I’m going the first week of July and earlier got me hooked on El Silencio Lodge I’ve visited twice now! Hopefully he finds no new skin cancers this visit. And maybe the best thing is that he is located in nearby Alajuela rather than far-away San Jose! 🙂 A much quicker and easier drive!

5. Next Monday – MRI at the Lindora Campus of Hospital Metropolitano

This MRI is for the Radiotherapists to help them target the cancer cells in my head, especially in the nerves since the cancer was in the left facial nerve. The best thing about this is that it is in a suburb on this side of San Jose, Lindora, and secondly in the only hospital that takes my Medismart Card for a big discount, as does the Radioterapia Siglo XXI I’m using and thus they are sort of Medismart partners. 🙂 It will take only about an hour with a little less than an hour each way traveling, so not as tiring as going to San Jose.

6. Next Tuesday – CT Scan and Mask-making at Radioterapia Siglo XXI

I assume that the MRI and CT Scan show different things that they need, thus I’m getting both in preparation for the radiotherapy. Both of these will be in San Jose at the Radioterapia Siglo XXI building where I will spend a lot of time the next month and a half.

7. Begin Radiotherapy in San Jose

This is the long-haul treatment of cancer, radiotherapy 5 days a week for 6 weeks and they guarantee that you will be tired at the end – enough so that they encourage you to plan no activities for the following 4 week or in my case, the month of June. It will take place in central or north-central San Jose at Radioterapia Siglo XXI, the only private radiation company in Costa Rica with only one place for the public healthcare patients to get it at Hospital Mexico. I chose to pay for private because it could be quicker, with often very long waits in the public healthcare system and because my oncologist strongly recommended it because of the size of the cancer.

As I shared in an earlier post, I am now planning to travel to San Jose each Monday and return to Atenas on Fridays, staying in a hotel near the therapy location. Even though someone else will be driving, I dislike the long, high-traffic drive that at peaks can be 2 hours between Atenas and San Jose. As long as I feel like it, I will even add a tour or two each week to something of interest in San Jose like some wonderful museums and parks plus history and architecture that interests me and may give photo ops, though many museums restrict photographs. Otherwise I will be pampered with all meals, room cleaning, Wifi, and hotel gardens to relax in between treatments. I will try to turn radiation into a relaxed and colorful, tropical vacation in the center of Costa Rica! 🙂

¡Pura Vida!

Radiation – The Next Adventure

For the last few days or so everything has been a “moving target” for me with an initial consultation with the radiation doctor explaining everything medically and checking me out and now we are putting a plan together with her staff and on the calendar, plus I’ve arranged to pay for it. And oh yes, this doctor is a specialist in radiation to the head and neck! 🙂 Hopefully my surgery neck swelling will soon be gone and the tender scars on my left face and neck healed better than they are now. I’m still sore and sensitive with only minor internal pain that I treat with Ibuprofen. They prefer these surgery “irritations” gone before they create new ones with radiation! 🙂

Below is their 3-step plan AND

“My Plan to Make it Fun.” 🙂

Continue reading “Radiation – The Next Adventure”

Biopsy Report & Long Range Plans

Yesterday, Tuesday, 23 March, was my big meeting with Dr. Hernández, post-surgery (though I had one earlier visit to remove the drainage tube). Here’s what we did and discussed for over an hour. And by the way, all the doctors here take as much time as needed and never rush you, yet they are very punctual with appointments, meaning that most allow an hour or more per patient for consultations. Compared to the states, better service for a fraction of the cost.

Removed the Bandages

Though we actually talked first, this was one of the reasons for this post-op visit included in the price of the surgery.

He is a young surgeon proud of his ability to provide “scarless” facial surgery by closing up the incision with “internal stitches” that I don’t understand, but there were no stitches for him to remove, just the bandages over the line that still shows right now, but will not later as it heals.

Sorry that my “selfie” doesn’t show it better, but he cut me from in front of and above my ear all the way down my neck to nearly the chin, all on the left side.

Then if it doesn’t gross you out, he peeled back the left cheek skin and cleared out all the tumor he could find, including the whole salivary gland and a part of my facial nerve, then put my face back together again. He said that when the swelling goes down, I will look younger on the left side because he stretched the skin tighter or smoother. 🙂 Like an 80 year man cares! 🙂

The Biopsy Report

He shows or explains everything to me on his large-screen computer monitor including photos of the actual tumor whole and when sliced to show what was inside. Then I receive a 3-page printed version of the biopsy including photos (only 1st page at right) but this version is en español which I roughly understand but he promised to send me an English version soon. Expats are more trouble as patients! 🙂

As expected all along but confirmed by this biopsy, it is cancer – invasive epidermoid carcinoma (translation of Spanish “carcinoma epidermoide invasor”). This is the same diagnosis as the skin cancer removed from my left cheek in 2019 by MOHS surgery which is supposed to assure one that all the cancer is removed. So much for MOHS! 🙂 Dr. Hernández said it is possible that a “root” or even a tiny piece of the original carcinoma on the surface was left in the cheek and it grows fast or matastisizes into the tumor that was not found earlier because of staying home for the coronavirus It was a large tumor, 4.5 X 3 cm.

Radiotherapy Follow Up

For the second time, a surgeon believes he “got it all” but that can never be guaranteed and the closest to a sure way is to follow up with radiotherapy. Thus I already have an appointment this Friday with “the best radiation therapist for head and neck” in Costa Rica, another female doctor who is “the best.” She works for 21st Century Radiotherapy, the only private company doing radiation. (None of the private hospitals do. They send patients to this company.) The only other radiation treatment available in Costa Rica is with the Social Security or Public Health at Hospital Mexico, where I had my angiogram. It would be “free” with my national health plan but Dr. Hernaández says they are too slow and could take months or a year to work me in while this private company can get started within a month or6 weeks which he says is essential for a spreading cancer. And of course that is a private doctor speaking. 🙂

But he also said that Dra. Bonilla would know if public health could get to me soon enough and she might be able to work that out, otherwise I will use my “MediSmart” medical discount card for up to 50% off the regular charge at 21st Century. But we are still talking thousands of dollars and me with no insurance. So Friday will be the next big decision time on this latest adventure.

I fully expect to deplete my saving a bunch more (Getting low already!) and have the radiation done with the private company, but will explore every reasonable option with the public health radiation. So another report Saturday on that! 🙂

And About the Eye and the Mouth

I have an appointment with the Ophathamologist in two weeks to discuss a surgical procedure she has done before that partially closes the eye lid and may allow me to have more use of my eye , where now I just keep it covered all the time. It will not bring the blinking back but possibly more use of the left eye.

The mouth will improve somewhat in time – months – but never back to totally normal. I might regain some muscle use on the left side to help with eating and maybe a less exaggerated lopsided smile. We will see! 🙂

And another little amusing side effect, I just learn that when I wrinkle my brow, it wrinkles only on the right side! 🙂

As Doris Day sang when I was a kid . . .

Que sera, sera

Whatever will be, will be

The future’s not ours to see

Que sera, sera

What will be, will be

And the feature image is another shot of my favorite Triquitraque Flowers still blooming! 🙂

¡Pura Vida!

Staying Positive When Cancer Comes

Since I was a high school boy when Mom gave me that book The Power of Positive Thinking for Young People by Norman Vincent Peale, I have made being positive a part of my life philosophy and really a part of my personal faith in God and the act of following Jesus.

It is kind of like happiness, it is inside you and you actually decide to be happy or not I believe. Then when bad things happen or come to your life, you make the best of them and keep on living. That is what I did for 20 years of a very difficult marriage while she was never happy and I was always happy in spite of the situation. Likewise with those overlapping years of a special needs child with autism and another rebel child. One survives by staying positive and finding the good things and opportunities, even within the bad!

Now don’t jump to conclusions – I’m not announcing my imminent death by cancer! 🙂

What has been for several years little skin cancers all over my body may have grown deeper roots or a separate and totally different cancer may have come that is more complicated.

New Adventure Started February 11

Not sure what to expect, I kept a journal of what was happening on one of the “static pages” or non-blog-post pages of my website and called it FIRST RAMPANT FEELINGS ON POSSIBLE CANCER. Kind of long.

The Latest Diagnosis

All those appointments and diagnostic tests lead to this current summary diagnosis with more detail in the online journal:

  • I have a tumor inside the salivary gland between my left ear and left eye that has grown fairly rapidly to around 3 X 4 cm now.
  • Though the needle biopsy indicates it is almost certainly a type of cancer only removing it will tell us for positive. Outside chance of no cancer. Prayers appreciated! 🙂
  • Surgery is scheduled for 15 March at Hospital La Católica in San Jose, Costa Rica
  • Dr. Christian Hernández Mena is my oncologist and surgeon – terrific in every way!
  • After surgery, a full biopsy is done, and the exact type of cancer determined, I could be receiving radiation and yes going bald! 🙂 More reports after surgery!

My Blog and Travel Plans Continue

I had to postpone my March trip to Tambor Bay, but hopefully by the time of my planned May return to Arenal, I will be able to travel just like always if radiation schedules don’t interfere! 🙂

For any readers who are also facing cancer, I want to recommend the following website and encourage you to stay positive and continue life as I will with the same kind of travel and nature blog posts right here at Retired in Costa Rica!

How to Keep a Positive Attitude With Cancer

“Choose to be optimistic, it feels better.”

—Dalai Lama

¡Pura Vida!