#so he prescribed me some heavy antibiotics instead. and ever since i took them ive felt genuinely like shit

[wasabikitcat]

hours turn into days turn into weeks turn into months and second nature turns into a task turns into a special occasion turns into an impossibility

[it-happenedtome]

It wasn’t anxiety, it was brain cancer

For years, I struggled with food. I would have random bouts of nausea and vomiting, or even just hours of nausea with no vomiting (which can feel worse). I would be terrified to leave my house at night and go somewhere because I would always be scared of getting sick and having to leave early. I felt guilty burdening my friends, family, and fiance with this fear and EVERY doctor I saw said it was some other stupid and incorrect diagnosis. I’ve heard I’m allergic to gluten, I’ve heard I have acid reflux, I’ve heard it was anxiety and all in my head. Nothing seemed to work and no medicine helped. I began to fear that people thought I was making it up to get out of things or leave places early, but the truth of the matter is that it killed me to leave so many important events early and miss out on memories. I took every test imaginable and never got any answers. This went on for 2 years.

Then, the headaches started. They were at the base of my skull, and excruciating unlike anything I’ve ever known. They felt muscular because they were so close to my neck, and they were pounding and constant. They started off with pain when I would yawn, stretch, go from sitting to standing and vice versa, etc. Then the pain became 24.7. I couldn’t function. I started yoga, I started seeing a chiropractor, I did everything I could to relieve the pain. Nothing helped. I used to be awoken by the pain at 3 in the morning and go to the kitchen in a daze to grab an ice pack to fall asleep on so that it would numb the pain enough for me to doze off again. 

I was naive and I thought nothing bad could possibly happen to me because I’m young, and I have the hubris of believing that I’m invincible. This blog is so people understand just that--it happened to me. Listen to your body when you KNOW something is wrong. I let doctors blow me off and blame anxiety instead of taking me seriously and I suffered for longer than I should have. 

One night, I felt dizziness like I hadn’t before. I blew it off, but the next morning I was super nauseous. That night, I went to the ER thinking I could just get an IV with some fluids and feel better. I mentioned my symptoms and the doctors thought it was vertigo because of the dizziness. I’m so lucky the doctor there suggested getting a CT scan of my neck because he was worried the chiropractor had messed me up. Once we got the CT, we saw something poking out from my skull. We did a brain MRI and were told there was a golf ball sized “mass” on my brain, on the bottom left side pressing on my cerebellum. The muscular headaches were caused because the tumor was pushing on my left ventricle artery and hurting the muscle, and the nausea was because my brain fluid wasn’t allowed to drain because of the tumor. This meant I had 2 years of fluid buildup in my brain and this was making my body want to dehydrate itself by vomiting as much as possible even though that didn’t help. It was also because the tumor was right on the center of the brain that controls nausea (lucky me). This all happened at like 3 am on January 16, 2018.

On January 18, I had brain surgery. I had no idea what I was getting myself into. Cancer wasn’t even a word anyone had used yet. We didn’t even consider the possibility that this wouldn’t be benign. I was extremely lucky with my surgery as I had NO complications and he got the entire tumor. Within a month I was driving again and my recovery was great. I had no headaches, dizziness, or nausea. I felt so lucky my problem had been solved. I was back to work and eating whatever I wanted, sleeping through the night, living as I always should have.

After pathology failed to give us the 100% clear that my tumor was benign, we tested it at several other places and were told the news that I had medulloblastoma, which is an extremely rare, aggressive pediatric cancer. No one knew where it came from. There is no history of anything like this in my family. I got lots of tests done which thankfully proved it hasn’t spread, and then started radiation.

Before radiation, I had to go through a very invasive and private process for about 3 weeks, one I’m not comfortable sharing online. This process was horrible. I had to inject myself every night, get blood tests every day, discuss things I’d never worried about before, and then have another surgery. It was an emotional roller coaster and it only weakened me. 

I was told radiation would be easy and a breeze. I had to do 31 rounds and from the first one I was miserable. I was told I would be able to keep working throughout radiation but the first night I was a wreck. I emailed my HR guy off the bathroom floor and told him I wouldn’t be coming back, and I didn’t know for how long. I was vomiting for hours at a time, unable to eat, get out of bed, or even function normally. I had to go to everyday, 31 days in a row. I lost all of my hair as well as about 15 pounds. At one point I was vomiting blood and needed another procedure. Radiation was pure hell.

Once it was over, they gave me a month to recover before I started chemo. My chemo regimen is cisplatin (causes loss of hearing and messes with my kidneys), then one week later vincristine for 3 weeks in a row (causes extreme fatigue), then one week later 2 days of cytoxan. This regimen, only 1 round, completely killed me. I was vomiting, nauseous, and dry heaving for 12 days straight. I lost another 20 pounds. At a certain point I was delirious from starvation and dehydration. When you get to a certain point of physical torture, when it’s 4 am and you haven’t had relief in days and it feels like there’s no end, you start to wish you wouldn’t wake up anymore. You go to a very dark place and start dreaming of euthanasia and start wondering what the point is of even fighting to live when being alive is TRUE torture. No one understands this. They just say things like “don’t give up, fight through this, you’re a survivor, it’s all only temporary!” To them I say, try going through the emotional and mental trauma of having cancer at 25, and then going through the physical HELL and trauma that only a cancer patient can understand. I finished that first round but I told my oncologist I can’t go that heavy for the next 5. (I have to do a minimum of 6). She’s slightly changed my regimen and has promised me it will be easier to deal with. We’ll see.

I’ve been up since 5 am because my appointment with my surgeon is today because my incision was infected. The antibiotics he prescribed have been killing me and I won’t be taking them anymore, as I have become very resistant to doctors and the things they want me to put in my body. I want to take some control back. I also will get my MRI results to pray and hope that there isn’t anything of concern in my scans. This is my current cancer story and I can’t help but cry about it every day so I decided to write about it as the sun comes up.

[memsmedic1]

India part two (clinics in the jungle) 12/25/2016-1/8/2017

…The patient was a 32 y/o male who’d been carried by his friends on a homemade stretcher from a village 5 hours away! He had been sick and getting progressively worse for the past 11 days with fever and chills, nausea and vomiting, abdominal pain, and now bloody diarrhea.

The patient was semiconscious, feverish, hyperpneic, tachypneic (44 RR/min) tachycardic, diaphoretic, hypovolemic (78/62), with severe RUQ and RLQ abdominal pain and guarding.

After completing a detailed exam and ruling out other possible causes of his illness such as appendicitis, peritonitis, encephalitis, amebic dysentery, malaria, and arboviral fever, we decided to treat for septic shock as well as enteric fever and infectious colitis.

After treating him with ceftriaxone, ketamine, promethazine, cipro, metronidazole, paracetamol, and 3 liters of normal saline over the course of the afternoon we advised his friends to spend the night in the village and come see us again first thing in the morning.

Next morning he was back again and this time he could talk and sit up on his own! He stated that he felt much better and his vital signs were much closer to normal than yesterday, but he was still sick so he got another IV with fluids and antibiotics, and then we turfed him back home with strict instructions on how to take the oral antibiotics and ibuprofen we prescribed for him and to drink lots of water!

Over the course of the entire expedition we only had a handful of critical patients (6-8) who probably would have died without care and several of them were seen in this first village. One woman who was carried in from an even further outlying village on a bamboo stretcher was so sick that we requested for her to be flown out by the military, and since we were foreigners they agreed. She was flown to Dibrugarh where she spent a week in ICU but was able to recover.

In between taking care of the critical patients, I was able to help with the rest of the people who came to be seen also. First the patients would sign in to the register and get triaged. After triage they would form a line and go one by one into newly built bamboo and sheet exam rooms where one medical person and a translator would do a complete workup on the patient and then call one of the two MD’s in who would take report, perform any additional examinations and make a diagnosis.

Most of these cases were fairly straightforward: We saw a lot of children with parasites, sick babies, stomach pain, back pain, muscle and joint pain, non cardiac chest pain, headaches, and ear problems.

We also saw quite a few patients who required surgical procedures. I was able to assist with several including keloid scar removal, lancing a plugged sublingual salivary gland, repairing a cleft lip, and cutting out a subcutaneous cyst on a patients head.

The amazing thing is how incredibly grateful and appreciative the people were for everything we did, from giving worm medicine and children’s vitamins to complex treatments and procedures. Not once did anyone demand more than we had given or try to maximize their profit from us unlike the rest of India. Of course some of the patients were shy and didn’t want to tell us everything that was wrong with them when we were writing down the chief complaint so after giving them medicine or other help for their illness or injury I would always ask if they had any questions and they would sometimes say no but I also have these other problems… So it was very hard to gauge how long a certain patient might take to be seen!

The medical team worked in the first village for 3 days. The weather during this time was crystal clear and sunny during the day and nearly freezing at night. On the morning of our first hike however, we woke up to fog and rain. We decided to hold the clinic for 2 more hours before heading out to see the last of the patients but it ended up being 4 hours by the time we were finished!

Then we packed all the medicine and supplies into large bamboo baskets that would be portered to the next village we would be stopping in. The cooks who had been taking such good care of us made us one more meal of rice and vegetables and then we were off on our first hike!

We were on the trail for maybe 2 hours when we came to a small village which consisted of only a couple bamboo houses. In front of one of these had been constructed a brand new bamboo shelter with tables and benches underneath. The villagers had received word that we were traveling through today and had prepared a meal for us!

We were all still full from lunch but if we were to refuse to eat it would be very disappointing to the generous villagers so we gratefully took off our ponchos and backpacks and sat down at the brand new tables.

In addition to the standard ball of rice with curry we were also given an assortment of fruits to eat. We had bananas, tangerines, fresh and dried persimmons (amazing), and small round fruits that looked exactly like tiny dragon eggs! They are called “gelesuh ” and after peeling the scales off are translucent with a large pit in the center like a litchi, but they taste deliciously tart instead of sweet.

Even though it was fruit like this that was special for me anything that can’t be grown or harvested locally is what is prized by the mountain people. Because these villages are completely cut off from the outside world except by trail (including radio, tv, cellular service, electricity other than solar, and even satellite phone which is banned by the military due to sensitive geographic location) you can either hike the 5 days out to town and then carry your groceries back uphill for 5 plus days home or you can purchase your supplies and have them packed in by Chakma porters.

Chakmas’ are originally from Bangladesh and are well known for the heavy loads they are able to carry. They make their living portering flour, salt, oil, roofing tin, and other staples up into the valley for 150 to 200 rupees/kg ($2.38-$3.17). The packs our porters are carrying are quite heavy (40-50 kg) but were nothing compared to what these guys carry which can be over 80 or 90 kg.

A package of salt that is worth 10 rupees in the city is sold for 200 rupees up here because it is valued by weight.

After this scrumptious repast we donned our packs and ponchos and continued hiking down the slippery trail. After another hour or so the rain stopped and we were able to see the afternoon sun shining on all the fresh snow that had been dumped higher up the mountains.

Part of the time the trail led through the dense jungle and part of the time we followed along the side of the river.

As we walked along we kept our eyes open for wild animals. Part of the trail we were on led through one of india’s national parks which is the largest protected area in the Eastern Himalayans, and is well known as one of the richest areas of biodiversity in India.

Animals that call the park and this valley home include Bengal Tigers, Leopards, Snow Leopards, Clouded Leopards, many smaller cats, Asiatic Black Bears, Sun Bears, Dholes, wolves, Indian Elephants and many other herbivores, Red Pandas, Slow Loris, Eurasian Otters, linsangs, binturongs, civets, butterflies, birds, and 7 species of primates!

While we heard monkeys almost every day (I think they were watching us) the only other wild things I saw were lots of brilliantly colored butterflies, many different birds, and a flock of Hornbills.

After another couple hours we came to a small Nepali village where the villagers insisted we stop for refreshments yet again! Fortunately for me one of our critical patients from the first clinic was in this village so I was able to delicately sidestep total gluttony and go check on her. While she had been doing very well after being treated a couple days ago she was now hemorrhaging again and needed additional medical care that we couldn’t give because all our medical supplies were ahead with the porters. We told the family that we would send a team back in the morning with medicine and helped them figure out some things they could do for her in the meantime.

After this we continued on hiking but because of our late start, the rain and slippery trail, and all of our stops we didn’t arrive at the next village we were stopping in ‘till a few hours after dark.

By this time we were tired, sore, and had blisters from our wet shoes but this village was very happy to see us and cheered us up with a welcome celebration that included speeches, dances, and jungle flower leis for everybody! Afterwards we were shown to our quarters which was actually a house built with hand cut boards for the school teacher to live in.

We set up our supplies in the village school and held the clinic for 2 days. Even though this is the biggest village in the valley there were no critical patients here so I was able to focus entirely on taking care of regular patients, and there were lots of them! Early in the morning when we’d walk over to the pharmacy and exam rooms to get ready to start we would have a crowd beginning to gather, and after dark when we were exhausted and finished for the day we’d have another look and there would be more patients waiting than when we started!

The kids were so cute and curious, our translators told us that there had only been one other time foreigners visited them; two German or Australian naturalists studying and photographing the flora and fauna several years ago. So if a child hadn’t hiked out of the valley yet either to go to town or school we were some of the first or the first white people they had ever seen!

On December 30th we packed up and prepared to hike to our next stop, but first the villagers had a going away ceremony for thanking us for coming and helping. They also gave each of us a beautiful hand woven basket as a going away present and then we were off!

Back along the river and through the jungle we trekked, enjoying the warm sunny day and gorgeous views. Halfway through the days journey we came to a small village where they were expecting us for lunch. After we entered one of the bamboo huts and sat down around the wall we had a happy surprise: no rice for lunch! Today we were served tea, popcorn, tapioca root, purple yams, and sugarcane! After we finished we were able to see 5 or 6 patients from the area before continuing on our way. Again we had to hike after dark through the jungle for several hours to make it to our next clinic area (not recommended).

There are countless creeks and streams that must be crossed, some via bamboo or log bridge and some from boulder to boulder. Also the trail was riddled with areas that had been completely obliterated by landslides and some of these were very treacherous. Either the mud is so deep that you run the risk of becoming permanently planted or so unstable and slippery you risk sliding right off the former trail and over the edge of the mountain.

Our destination today was the smallest village we were scheduled to visit. We spent New Years Eve there seeing patients and for the first time were able to see everyone who came for treatment in one day and still have daylight leftover to wash our clothes and take baths in the river! To get to the river you had to walk through a large field of cardamom which is the cash crop of this area, through a section of jungle, down a part of the mountain so steep you have to use roots and vines to lower yourself down, through more jungle, and down the bank to the rushing, bigger than it looked from the helicopter, ice cold, crystal clear, glacier water!

After hanging around the fire for a couple hours talking and taking care of blisters we went to bed, but not for long! We were woken up just after midnight by several very loud firecrackers and then we heard a large group of people singing to us! To celebrate New Years here the villagers go caroling and write a Happy New Years message on all the doors in the village in addition to setting off fireworks if they can get them.

Next morning we wished each other a happy 2017 and began packing our backpacks and getting ready for our longest hike of the journey. We ate a delicious breakfast of tea, rice balls, and dal and were on the trail by 0730.

One of the American teams people had been kinda dragging for the last day or two and wasn’t eating much but she said she was fine and we thought it was probably just fatigue and a stomach virus.

Again we traveled through virgin jungle and along the pristine river under a sunny, clear, bright blue sky. The sleeping bag penetrating chill of the night soon wore off and we started shedding our jackets one by one. As happens every travel day, the group slowly spread out along the trail as we hiked along with the faster ones in front. The longest hike of the expedition was going to be today because we were passing through the least populated part of the valley. There will be no villages between where we stayed last night and the next village where they are expecting us tonight. There was not even anywhere for us to stop for lunch so we were all trying to make good time.

Early afternoon I was drooping along somewhere near the front of the lineup when I was overtaken by one of the other M-E.M.S. team members. He told me that one of our translators had caught up to him and said that the person who had looked a little sick earlier had suddenly become a lot sick and was hardly making any time at all. The two of them were trying to catch up to the front of the group where the porters were and grab some IV supplies and medicine for her.

I decided to go with them so the 3 of us jogged down the trail a couple more miles until we came upon some porters. We searched through their loads and found a bunch of saline and a drip set but none of the other supplies needed. We continued on a little farther and found another group of people including some porters and another M-E.M.S. member. After more searching through porters loads we had amassed an eclectic pile of IV crap and a couple meds but not the medicine or IV start supplies I was looking for. The porters told us that the items we were looking for was with the next group at the front of the expedition but that they were too far ahead to catch.

We decided we would just have to make what we had work so the 3 of us from M-E.M.S. started running back up the valley towards our days starting point looking for our patient. We would remember certain landmarks and say “surely they will have made it that far” only to have them come into view one by one devoid of life.

Finally just before sunset we caught sight of our goal slowly moving toward us. One of our translators was carrying the patient on his back and there were a couple other medical team members and porters with them.

After laying the patient down and everyone else quickly catching our breath we found out the patient had started off from the village this morning mostly ok but then started experiencing worsening nausea, vomiting, diarrhea, severe headache, weakness, and dizziness. When I checked her out the patient was cool, pale, diaphoretic, tachycardic, hypotensive, and dehydrated.

I patched together the supplies we had been able to find, started an IV, and gave her what medicine we had. Then we built a stretcher out of a bamboo pole and a hammock and got ready to retrace our steps a second time back down the trail.

This was easier said than done. For one thing there were creeks, streams, bamboo pole bridges, fallen trees, and landslides to cross, and for another even though we rotated out who was carrying the stretcher fairly often, when the translator/porter first came ahead to tell us there was a problem he had left his load along the trail so instead of resting between shifts whoever wasn’t carrying the patient had to tote a giant porters basket filled with clinic supplies!

After dark we continued on for 5 or 6 more hours using our headlamps but there was no way we would reach our destination that day. Fortunately one of our translators knew a family who had moved from the large village that we had held clinic at into this mostly unpopulated area to start growing a cardamom field and we were able to make it to their bamboo house and spend the night with them. They also gave us our first real meal since morning which was no small thing because they haven’t started growing rice yet. They have to carry in all their food that they can’t hunt or gather in the jungle!

The patient was still very sick and couldn’t eat or drink anything so we gave her more medicine, hung the IV bottle on the bamboo rafters above her section of floor space and kept it running all night.

In the morning we all felt very stiff and sore but the patient was feeling a little better and was able to walk with assistance. Our kind hosts made us rice cakes wrapped in leaves for us to take with us for breakfast and we started on our way again.

We added up the totals with our translators and figured out that the 3 of us who went back up the trail yesterday walked and ran a total of 27 miles, and most of that distance we were either carrying our backpacks or the patient!

Today we only had to hike 9 miles in order to catch up to the rest of the medical team, some of that way being through the jungle and a good portion of the distance along the bank of the river. Part of this was easy for our patient to walk over with sand and small rocks, but part of the river lay through a boulder field that would be covered by water during the rainy season and was a daunting challenge to clamber over one by one (still easier than blazing a new trail through the jungle though). We were all very grateful that our patient could get through this without being carried!

About halfway to the village where the team was holding clinic we were met by an emissary who was bringing us the medicine and supplies that we weren’t able to get from the lead porters the day before! Yesterday while running back to our patient we asked some of the team to send certain supplies back ASAP but we were just now getting what we needed. We took a trailside break and administered some additional meds to the patient which at least helped her maintain her current condition without worsening.

In a few more hours we arrived in the village that we were supposed to get to yesterday (too late for lunch although I wasn’t even hungry by this point), and after making the patient as comfortable as possible were finally able to take a rest! Somebody, though I don’t remember who it was due to my exhaustion, came over to where I was lying behind the medical supplies and took off my boots and washed my feet in cold water which helped immensely to rejuvenate me. After recovering for a bit we jumped into patient treatment mode along with the rest of the team who had already been seeing patients since early morning, and worked for the remainder of the day.

After clinic was finished for the evening Phillip came and talked to us and said that there was a problem. He was worried that the entire medical team would not be able to make it to the last village that we were scheduled to visit because it was not on the way out of the valley and the team had a lot of blistered feet and exhausted people in it by now plus a sick one. To get to the last village one would have to cross the river and climb a trail straight up the side of the mountain out of the river valley and back into the mountains.

Phillip didn’t want these villagers to be disappointed knowing that a medical team had passed within a few miles, were supposed to stop in their village, and didn’t, so he was wondering if the 3 of us from the Myanmar team and the optometry assistant would be willing to go provide care on our own (Phillip and Nio had to stay with the main group in case there were problems). I thought about my feet and muscles for a second or two and then said yes I’d be happy to go! The other three wanted to come also so we made preparations to leave the next day.

The next morning there were still a few patients we had to see and a couple procedures to do but after everything was done we helped pack up all the medicine, equipment, and supplies into the baskets that the porters accompanying us to the last village would carry. The rest of the team heading out of the valley had already left by the time we were packed up so we said goodbye to the villagers and we were off!

We had followed the river downstream for two or three hours when we came across 4 men who were from the village we were on our way to. They had been expecting us to arrive today and had come down to give us some fresh fruit from their village and guide/assist us with our gear on the journey there.

The nickname of this last village that we are heading to is “the fruit village” and we now saw why. Our new friends had brought tangerines, grapefruits, and pineapples for us to eat and fixed them for us right there on the riverbank!

After we were done we continued on down the river for a little farther then turned off onto an obscure trail into the jungle. After a few minutes we popped out into a large clearing where there were several recently harvested rice paddies with little ponies grazing on them. Our guides told us that this is where the fruit village grows their rice because it’s the closest level area to the village. At the far side of the paddies the mountains started abruptly and we soon found ourselves clearing the trail with our noses as we climbed up the remarkably vertical trail.

Up, up, up we went until we finally cleared the valley and started walking along the mostly level ridge for a few minutes. Then we turned and dropped down onto a flat shelf on the side of the mountain and walked into the village. Everywhere we looked we could see pineapple plants, banana trees, many different types of citrus trees, and persimmon trees all loaded with fruit growing in between the houses. After we dropped off our packs where we would be staying we decided to set up the clinic since it was still early and see as many patients today as we could.

The village had already prepared the small 3 room bamboo schoolhouse for us to use so we simply unpacked and organized everything in one room and started seeing patients in the others.

There were never more than a few patients at a time waiting to be seen so we were encouraged to keep going by thinking that we had almost seen everybody. However, every time we called a patient from the waiting room (bonfire) another one seemed to take their place!

Finally, a little after eleven we saw the very last patient and called it a day. We walked back to the house we were staying in and started warming up around the open fire pit. While we were sitting talking and unwinding some of the village women brought us supper that we hadn’t stopped to eat earlier! We ate and crashed because tomorrow was the last day and we had a long hike out to town.

Next morning after a breakfast of fruit we loaded up and started off. Leaving the village we took a different trail that lead in the direction of town and would save us considerable time. Also it wasn’t as steep!

After a couple hours we wound our way back down to the river and continued to walk along the bank. The river was much larger now than it was when we saw it last because it had been joined by another river. The river was quite wide, at least 7-8 feet deep, and still ice cold. Sometimes in order to follow the easiest route bamboo bridges have been constructed from one side to the other. These bridges are built every year at the beginning of dry season and wash away every year at the beginning of rainy season so they are only built well enough to get by. Every time we walked across one we unbuckled our backpacks in case the bridge broke or we lost our balance off the one or two bamboo poles available to walk on.

Other times there were large streams flowing into the river that were too small to justify a bridge so we just had to wade through.

Early afternoon as we were walking along we saw a group of people far up ahead of us. As we got closer we realized that it was the rest of the medical team! They had spent last night camping out along the river and hadn’t left as early as we did this morning.

We crisscrossed the river several more times with the bamboo getting slippery from a light drizzle that started falling. Finally we left the river and started up the last steep part of the trail to the road. This road is constantly under construction to push up into the valley we are leaving and is constantly being obliterated by landslides. Right now the road extends 18 miles out of town. Phillip had arraigned to have 4 taxi trucks meet us at the end of the road today but when we scrambled up the last of the trail and onto the road there was only one taxi who was there by chance dropping off Chakma porters. Because there was still no cell service this far out Nio caught a ride back to call for additional taxis once she got into service.

Because it takes an hour and a half just to drive the 18 miles to or from town we decided to start walking. After 2 or three hours four more taxis showed up for us and our hiking was officially over!

The Myanmar team spent a couple extra days after the American team left hanging out and recuperating with our new friends before taking a truck taxi the 7 hours south to Dibrugarh. On the 8th we said goodbye to India and flew back to Thailand with sore muscles and blisters but so grateful for this opportunity we had to be of service and explore a remote corner of the world while spreading peace, goodwill, and healing!