Finally. Day 1: The beginning of The End.

Today I finally started radiation therapy for breast cancer. After several months, and many, many delays, I finally had my very first radiation session. 

I will do treatment every day for 4 weeks (excluding weekends). 

It was almost a joke yesterday when I was, literally, getting dressed to head out for my first radiation appointment that had already been delayed and rescheduled 5 or 6 times, that my phone rang. It was the radiation tech calling to tell me not to come. 

Can you believe it? The machine broke. 

My treatment would be delayed...again. At least one more day. 

It was as if the universe was reminding me one last time that there is and will be so much in this life that I will have absolutely no say over. 

A reminder that in fact, I there are very few things that I do have a say in. 

I got a bit emotional while flat-backed on the narrow treatment table, staring up. There was a blank monitor right above me that reflected back to me my splayed out body, arms over my head, exposing the extremity of all my new scars. Pink Floyd's "Dark Side of the Moon," was playing. I like this song. I looked foreign. An anonymous, exposed, white-pink frame. An unknown...patient. 

I looked up at the portion of my body reflecting back from the black, latent screen. I neither recognized it, nor felt attached to it. It was too text-book. It looked too much like a no one. It was kind of good, in a way, to feel like my body was just normal, average. I had no emotional attachment to it. No embarrassment or shame despite how exposed I was. 

The nurse dabbed a few tears that rolled down my cheeks and I said, "I'm okay. Just happy to finally get started. The beginning of the end. Finally. 

Rest

 Tonight I go to bed not because I am exhausted, but because I am at peace.  

Maybe one day soon I’ll catch up writing about the past few days of my adventure in Scotland, and possibly the past few difficult months…years, really of every kind of hurt. But not tonight. Tonight I’m both sleepy and calm; a combination that has eluded me far too long. 

Tonight, with eyes droopy after a long day driving through not-quite-even-a-full lane road surrounded by sheep, highland lochs, wildflowers, wind and rain, and splashes of sun; after  breathing in immense beautiful with my whole soul, now with the perfectly timed crashing of the North Atlantic Ocean outside my window, I’ll rest. 

New Chapter: How I came to be in Scotland

How I came to be in Scotland. 

Without going into too many details, which I’ll save for another post I ended up in Scotland because of cancer.

In March I was diagnosed with breast cancer. I had just had the fifth surgery on my knees two weeks before I was diagnosed details for another time.

I have had two partial mastectomies/lumpectomies since then.  The surgeon was sure that he had gotten it all the first time, but with multiple positive margins, I went in for a second surgery. 

When I met with the surgeon last Thursday to get my stitches removed, he told me that unfortunately, there was still at least one positive margin. Meaning I would need yet another surgery. My body is very stealthy and its attempts to kill me.

I’m mostly writing this post just to document what will be the first dose of a medication I will be on for years. Tamoxifen.

Since I’m not able to start radiation as planned, I’ll need to start taking tamoxifen now. (However, it’s contra indicated with surgery—because nothing in my life can be simple. I will take it for one week and then hold it a week before surgery and two weeks after.) but we have to start treating it somehow with all these delays in the cancer still being in me, so this is the solution for now.

My surgeon said that he will be on vacation until July 9. But will get me on his schedule for a third partial mastectomy/lumpectomy shortly after he returns. 

I told him that if he was going on vacation, maybe I would go on vacation too and we could meet back, along with the anesthesiologist again in 2 weeks. 

To be fair I had already been and always am looking at flights and locations to explore. 

I somehow settled on Scotland and I’m so glad I did. I’ve only been here about 14 hours but somehow the moodiness of the weather and texture of all the stones and different colors of greens have been good for me.

To be honest, I’ve put off taking this pill for a few days because I’ve heard the side effects are so bad and just wanted a few days without new side effects and pains and hurts. But it needs to be done.

I’m not really one for pomp or circumstance but it’s somehow helpful for me for those to be a little ritualistic tonight, sitting in my lovely hotel room with the pill set out on the table documenting— accepting—starting—what will be prominent event in my story. 

Taking the first of many pills that I will be taking for years to come.

Tetanus

Yesterday as I was getting report (update of all the patients) from the off-going nurse I commented on how much I've learned and seen already. Things I would never see "back home". Diseases so horrifying and cruel that faces, images and families are burned in my mind forever. Diseases that have been all but eradicated through vaccination in more developed countries. Things, that sadly, due to willful ignorance I may actually have to see break hearts, families and bodies again"back home".
I mentioned that the only thing I feel like I haven't seen, and that I hope to never see (as it is one of the most gruesome and torturous diseases imaginable) was TETANUS.

That day I saw tetanus. I wish I never had. Torturous is the right word for it. It's easily contracted through the soil. Yes, even in the U.S. soil and that of other developed countries. Just a small cut, sometimes so small it goes unnoticed or thought of as insignificant is enough to the let the tetanus bacteria in where it releases toxins. Within days these neurotoxins cause a systemic infection causing every muscle in the body to wrench, tighten, twist, and contort. A person has the tell-tale "lock jaw" sign in which the muscles in their face and neck (and everywhere) are so stretched, and strained, and tight that one cannot open his mouth, the jaw is locked shut. The back muscles constrict so extremely the skeleton is bent painfully, unnaturally into an awkward, arching, twisted backbend that lifts the patient off the bed as they whimper and cry in torment. But even crying is hard because the face is so taught. I watched it happen.

Aside, from vaccinate immediately (playing catchup), treat with antibiotics (often for several weeks/months) and try to relax the muscles with drugs and give pain meds for the unearthly contortions (all of which help...some...but not enough to make it un-excruciating).

I will try to portray to you, very briefly, the image I keep seeing over and over. As we went to move the patient from the emergency stretcher to a hospital bed, his father slid his arms under his shoulders and under his knees as you would to normally carry a child who had fallen asleep up to bed. However, the patient was rigid, and not a little. There was no bend in his knees, no flopping of his head or falling of his arms to his sides as he was lifted. Rather he lifted as one straight-backed stone, arms bent harshly at 90 degrees, muscles so tight it kept his whole body as if it were only one very solid piece. All I could think of was that it looked like someone trying to carry a surfboard. Because of the awkward stiffness of the patients body, it took two other people to carry this frozen body to the bed.

DON'T write/speak/tell me anything about anti-vaxx anything. Just don't. 

No shortage of need in this world

While at the hospital families provide all the cares for the patients. Many come from very far away and have almost no resources. A caregiver is required to be with the patient at all times except in extreme circumstances where there is no family or family is also hospitalized-or if they are an orphan. With the infants, many parents actually climb inside the crib and sleep with the baby in the crib. Others, sleep in the hospital bed with their child...and sometimes a spouse...and other children they had to bring along. These are not large hospital beds and sometimes an entire family sleeps in the bed with the patient (technically not allowed, but when there is no space, what are you going to do? Others sleep outside on the ground or in the outdoor concrete corridors of the hospital. A few have tents, many use whatever they have on hand to build a makeshift shelter for the night, days, weeks, months they are here.

The hospital doesn't feed the patients or families. The families either make or buy food and bring it in. This a problem for many who either come emergently or have no means to buy or make food once they do arrive. They also do many of the cares, like counting how much the patient eats and drinks, weighing and counting diapers and ensuring physical therapy exercises get done after they have been taught how to do them. It is all up to them. (This is common in many hospitals throughout the world, particularly in developing countries.)

As I mentioned before, many people come from far away and risk a lot by coming, particularly at this time of year. (Some villages don't even have roads that lead to or from them.) It’s harvest season and bringing their child to the hospital means they may lose an entire years worth of crops and salary and work. For those who come from very far this might mean walking, a scooter with several family members crammed on, or a long bus and tuktuk ride. Laos has very few “cities”. The majority of Laos is incredibly rural with very basic housing housing many generations together. There is no clean water. It all must be boiled or bottled. Much of Laos doesn't have electricity. Some parts of Laos that do have electricity often have shoddy, jerry-rigged set-ups and fires are common because the makeshift addition of electricity with crazy wires, etc hanging to/through a house not intended built for it. The villages (which are counted by how many families live there, not the number of people) are small and often only work as subsistence farmers, meaning they only grow enough to feed their own families and trade within their small communities without much, if any, excess. So again, missing the harvest can be devastating. I can only imagine the strain and stress this puts on them, not to mention the whole ordeal of having to figure out how to get here, often not knowing how they will get home. Mad respect for all of the people in Laos. There is some help the hospital can give for these families to ensure they have food while they are here, and in extenuating circumstances will sometimes help them get back home. As with most places, those who live closer to the city have more access to care, and are often more educated regarding medical care and disease prevention. 

One especially great thing about this hospital that I’m sure makes a huge impact is the “Outreach” program. The outreach team will, I think twice a week, go out to visit previous or chronic patients that have missed their appointments or ensure the family is doing the home care correctly. The outreach team will also ask if there are any sick in the village and bring them back to the hospital if care is needed. Some times they go out for several days if they are going some where that is difficult to get to are far away. They kind of work as a home health, social work, patient and family advocate, solve every problem team.  We have one child here right now that lives several hours away that outreach brought in. They patient has a serious chronic condition reliant on frequent blood transfusions but the family has no way of getting here. Outreach went out and found this child 5 months after he was due for an appointment. He, of course, is very, very sick. I would say we probably have about 10 kids with this exact story every week. Outreach does amazing work, and they do what they can but there are simply too many, too far away and sometimes family does not want, or cannot come in and the children pass away. There is no shortage of need in this world which is difficult for me to completely fathom, even in the midst of it, having come a from a land of so much excess. 

Volunteering in Laos, the beginning- Initation by fire

The staff here is pretty fantastic. Not only are they knowledgable, they have the tolerance and humility of saints. I can’t imagine having new volunteers come every month or few months and having different ideas of what is important or how things should be done. I, of course, have things that I wish I could emphasize and change but the truth is they are doing a pretty great job and I have to understand the relativity of the situation along with my own personal biases about what is most important and what should be done or improved upon next. The longer I am here the more I realize that I am actually not “doing” much. The staff know what they are doing far more than I do. The deal with things like preventable disease like meningitis, Japanese encephalitis, polio, tuberculosis, among others things like burns and tropical diseases like malaria, dengue, weird fungal stuff, far more than I do. In these, and many other situations, they are the experts, and I learn a lot from them. 

Yes, the longer I am here the more I feel like my job is not necessarily medical as much as solidarity and to stand as a witness. I don’t know how that translates or comes across but that is the best way that I can think to say it. I am experiencing a lot. I am seeing a life that I knew was remote and less fortunate than my own, but I am seeing a ruggedness I hardly believed existed anymore…and I am in the city. And seeing now that my job is more of a witness, and hopefully, a help I will attempt to share some of the things I see and experience. I understand that my view is colored very much by my own life and as I am seeing on the regular, with much humor involved, many things are misconstrued or lost in translation. So, forgive me if things are not quite right or “lost in translation,” either from my misunderstanding or because they are passing through the filter of my mind. 

In regards to a lack of frequent updates, I have learned sometimes you just have to wait for these things to come out in their own time. They can’t be forced just because I have the time or desire to write. Sometimes my mind and spirit-and the story-need a little time, a little distance and a few breaths before being able to “speak them out loud”. All that being said, here goes. 

Ended my second shift ever at the hospital coding an infant. I’d made friends with mom, even though we don’t speak the same language, throughout the day. Her baby was sick and we moved him from the main area (where he had been for a few days) to the Emergency Area where we could give him more attention (when I say we, I mean the Lao staff, I technically am not allowed to provide patient care, only support to the staff). I had put my arm around mom when he first took a turn for the worse. A few hours later things got really bad. As soon as chest compression started on his little body, mom ran straight at me from across the room and collapsed crying into my chest. I held her for several minutes while they performed CPR on her new little baby. In the end, he did not survive. When he was gone and lying still, I helped mom into a chair next to a bed and placed him in her arms. He was very sick and we have limited resource. Too tired to cry right now. 

Two shifts in and we coded and lost another baby. 

I’ve witnessed many deaths since I’ve been here. More than we would at home. The hospital does a great job and saves a great number of lives but there is still a lot we can’t do. 

Taking this act behind the scenes

I'm going private. Very few people even know this blog exists but since I plan on sharing it a bit more, I want it to be a little more secure. Let me know if you still want access to it as I'll be changing it to private in the next few days.