My story really begins the end of January 2009. But it begins with my mother instead of myself. In the middle of the night my father woke thinking Ms. Ella the golden retriever puppy was trying to climb up on the bed again. She wasn’t allowed on the furniture let alone the bed. Thinking he was going to scold Ms. Ella it wasn’t what he was expecting. Instead my mother was having a seizure.
A few months prior to this she had a CT done of her head because of sinus problems and nothing showed up on that scan. They even went back to this scan just to look thinking it might have been missed, even though the scan was for sinus problems. But it was confirmed there wasn’t a sign of a brain tumor on this scan.
Of course, she was taken to the local hospital but they just don’t have the technology to do a whole lot. The next day my father took her to Fargo to see a neurologist. That day they had some results and while they didn’t know exactly what they were dealing with they knew it was a brain tumor of some kind.
A few years before my mother’s sister passed away from a glioblastoma. Because of that we were very familiar firsthand how brain tumors can be and their treatment and the final results. They were not very nice. But with my aunt her story began with a headache that wouldn’t go away that was continually getting worse.
That next day they were on their way down to Rochester MN with an appointment for the following morning. Because of what was going on they were able to get her into to see a neurologist immediately. They did lots of tests that day and it was early evening when we got the call saying she was slotted for brain surgery at 8 that next morning.
Talk about scrambling to pack and get things ready to go. Get the dogs to the kennel, we only had the two at the time. So it was a matter of letting the school know the kids would be out for a few days and doing the mad dash to pack suitcases for everyone. I don’t remember what my job to do was that time, but it wasn’t packing. Let’s just say, one daughter had the pick of almost her entire closet and the other needed to buy a new wardrobe as soon as possible.
In coordination with my brother and his wife, they left their three kids at home with her mom. Her mom came down from Canada quickly to look after my two nephews and niece. I don’t know what time we left that night but it might have been around 8 or 9 pm by the time we were ready. We each took our own vehicle but we followed each other down. At that time, we didn’t have a need for a GPS, but my brother had one, so he was our eyes for getting on the right roads. That and talking to each other during the busier highways and interchanges.
We made it just in time to see her off a short time before she was taken into surgery. We stayed at the hospital all that day. The kids really didn’t sleep the way down and it was an unexpected trip so they didn’t nap before we left either. They had been to the Mall of America and to Twins games (row 1 right behind the dugout, I didn’t need zoom on my cellphone to take amazing pictures, seats compliments of Willy’s work. We just had to request what game we wanted and the number of seats we wanted and they were granted.) Until then the kids had only been to Minnesota (obviously) South Dakota, Wyoming and Montana as well as places in state. So, it was quite the adventure going to the ever-famous Mayo Clinic, Rochester MN. But none of them had slept that day either. We had secured hotel rooms but that first night, I stayed at the hospital while Willy took the kids to the room to get some sleep and swim a bit.
My mother came out of surgery just fine, and under normal circumstances they have pathology look cross sections of the tumor immediately to at least find out exactly what they were dealing with. This time they had to admit pathology didn’t know what they were dealing with and we would have to wait until they had to look at it closer. It wasn’t till late that next night when I was able to return to the hotel room for a shower and much needed sleep.
Later we were told she had a Primitive Neuroectodermal Tumor (PNET) but this was a very rare one and very aggressive. It’s a childhood brain cancer with only about 57 children having it. My mother was the 5th adult to have it. Survival rate was practically zero, but they were going to give it everything they had. But the blood brain barrier makes it very difficult to treat any brain cancers so not only did she go through regular chemo and radiation but they planted chemo seeds right inside her brain as well. They hit her with the strongest chemo and radiation possible. The nurses were often surprised at her doses because they were so strong. But they didn’t have much of a choice. It was go big or go home.
They might not have been good parents on the emotional level, but they had always been honest with me about the health of loved ones. My grandmother was sickly when we were overseas and they were always honest about her health. But now they were holding back and not telling me the truth. Even my SIL agreed that they were holding back because my father was telling my brother things. Then I had to call him wondering if there was any news or not only to find there was. It might have been the only time my SIL stuck up for me. Usually she was saying mean stuff under her breath making you kinda wonder if you just heard what you thought you did. I left more than one family dinner in years prior in tears on the way home. She attacked me and all my kids for one reason or another. Just before my mother got sick I told my parents I wasn’t going to have another family dinner with them if she was to be there. My father talked me out of that when my mother got sick.
I had even written on facebook about that just scroll down, the titles will make them stand out as to which ones I am referring to.
A customer turned close friend had his bi-yearly doctor’s appointment in Rochester at that same time, so we stayed on an extra day so we could sit down and visit with him and his wife. But it was more than sitting down, it was meeting for the first time. Until then we had only chatted online. But we became close friends and we still are to this day.
But I didn’t talk to my parents a lot that year and it came and went in a blur. If there was something I needed to know I waited for my parents to ring me to let me know. They were gone most of the year anyways. All of my mother’s care was done at the Mayo Clinic, Rochester MN.
Almost a year later, when they were down there for their next 3 month MRI, the scan showed it had come back and in full force where it wasn’t to be seen in the one three months prior. Once again, we packed for another long trip. This time we had our own GPS for traveling but we still drove in tandem with my brother. Given the medical needs of our two youngest we couldn’t leave them with anyone while my brother had his MIL come down once again to care for their kids. As strange as it sounds this trip was a bit more relaxed since we knew what to expect and was getting familiar with the hospital itself. St. Mary’s is nice. On our way home we stopped in Minneapolis for the night to visit with our friends from the city that I mentioned before. It was nice to see them again, but just wish it was under nicer circumstances. Which we got later.
We had requested Twins tickets again through Willy’s work and if they couldn’t just give us 5 tickets. We had to take 6 of them. Three in the first row behind the Twins dugout, and three in the first row behind the opposing team’s dugout. So rather than waste the seat we asked or friend to come with as he is a huge fan of the Twins baseball team. Once again… the kids all got game balls handed to them from the teams. We have 6 game balls that were played in the game and some are autographed. That visit we had to visit our friends favorite sweet shop. A candy store full of the most amazing candy, and they even carried the ones that are hard to find and remembered by older folks. But we also did some shopping in our friends shop as well.
The next year went by with a blur as well. My mother went through two stem cell transplants. Blue Cross Blue Shield told them it would not be covered so my father put some of his “worst” land into a government program, kinda like CRP but not that one to pay for it. It was going to be expensive but my mother wanted it. But when it came down to brass tacks, what mattered was how mayo clinic coded everything when they sent off claims for insurance. Turns out it was completely and totally covered. They stayed at the transplant house when there and got to know many. Learned about others using nutrition to “heal” cancer.
In the end it didn’t matter that she had 100% of her treatment at one of the best hospitals in the world. Spent I don’t know how much on supplements that were thought to help. They changed their diet to only eating foods that were thought to help as well.
They always ate healthy. Think Amish diet where nearly everything comes from what you make yourself. They almost never ate out. My mother even took grain out of the grain bin and ground into flour to make bread. She couldn’t eat a lot of processed foods because of her headaches. She had them all her life since falling from the hayloft in the barn onto the concrete floor as a child. But she would not address them with a doctor since one in the 70’s laughed at her and told her that everyone gets headaches. So she suffered with them all her life and they got worse after the brain tumor.
My mother journaled, at least that last year as I saw her write before I picked her up to take her to the farm. No one has read them to my knowledge. I am not even sure that I want to if given the chance. But it’s something that I do want someday just to have them.
She had to go to the farm that day because they had Farm Rescue come out to take the harvest off for my parents. She just needed to stay a moment, and would have been fine if she hadn’t but she wanted to say thank you. Years prior my parents arranged it for close friends of the family who was in a bad accident. A tree fell on his tent when camping one night when a storm came up. He was seriously injured. This time with my parents spending most of the year in Rochester it was arranged for Farm Rescue to come help my parents. It’s an amazing organization that comes in with a huge crew of volunteers and puts the crop in or takes it off. An amazing sight to see so many combines running in the same field. They help farmers who face medical situations. They have helped so many in need.
It was in January when my mother was having seizures back to back without stopping. At the hospital in Devils Lake they called to send her back to Mayo. Mayo sent their personal hospital jet for her because it was the fastest then local life flight services. My father left to get ahead on the driving, some 500+ miles. So my brother and I saw her off when they arrived. Of course before they would get her ready to go my brother had to hand them a check for 10K for their services. Since insurance paid so much for her care, he was glad to write that check so she could get her their faster in their jet.
Once again, we were packing our bags early to be ready to make the trip once again. But instead we got a phone call saying it was back worse than before, there was nothing more they could do. The stem cell transplants had taken their toll on her and her quality of life was almost zero that last year. They were coming home with phone calls to make to hospice.
I spent the next month driving every day between Cando and Devils Lake. I would get home late at night, shower, go to bed and leave as soon as the kids got on the bus for school. My oldest has stepped up to the plate early on account of her brother’s medical problems, and again with her sisters medical problems. I feel badly that she had to grow up early to do that. It’s one of my life regrets. I had to do the same for different reasons and wish it had been different. But now she had to make dinner for her siblings since the hubby couldn’t boil water. It was up to her to make sure the dishes were done, laundry was done and the kids picked up after themselves. There wasn’t a day that I didn’t go to my parents. Until that point my father really believed he could save her by eating right.
When she became bedridden using the hospice bed in the living room, I packed my bag and went to stay with my parents. She needed two people for cares, especially turning. I knew this without being told and volunteered because I had spent years working as a CAN in a nursing home so was familiar with the routine. Except this time I couldn’t go home after my shift, live my life and forget work until my next shift. I knew it would be bitter sweet when I left to go back home because my mother would be gone then. I was there nightly for about 6 or 7 weeks
The last 3 weeks we swore that night was going to be her last night. I had to time her breathing, because it wasn’t regular. It drove us crazy. The hospice nurse came weekly since we were going good with her cares. We spent the nights in shifts staying up with her watching over her. We took cat naps during the day.
As I said my father’s family is messed up. We hardly ever talked. But this time we talked and talked. I learned things I didn’t ever know. I didn’t get answers to the questions I had but a few were answered without having to ask. My brother came twice during all that time I drove daily and stayed nights. He didn’t know how to deal with my mother being sick so he stayed away. It was my responsibility as the daughter, plus I didn’t have a job to deal with. I just had to close my home business but that wasn’t a real job of course.
Still my father thought he could save her, maybe give her a few more years if she ate right. She hardly ate anything at all. I know the exact moment he realized he couldn’t save her. He let her eat foods he never allowed before. Mint chocolate chip ice cream, potato chips and I baked her favorite peanut butter cookies. As soon as he let her have those foods, it wasn’t long till we were counting the cc’s we managed to dribble into her mouth via needleless syringe. Still she clung to life, how I don’t know.
The day of April 4th, 2011 I had to get out of the house or go crazy. I decided to cook pork chops and caramelized onions that afternoon as a change to having wild caught salmon, beets and sweet potatoes again. . . So I needed to run to the store. When I got home I knew the clock to the end had been started. That tell tail skin mottling can’t be ignored. Dinner was forgotten as we sat around my mother talking to her. At 4:04 that evening she took her last breath. The clock stopped.
May 4th was the day I was admitted to the Cando hospital. I had pain in my leg for several days. I didn’t know what I could have done to pull a muscle. It wouldn’t go away and just got worse. I made a doctor’s appointment when I couldn’t stand the pain anymore. That day was the day ultra sound came for their weekly to-dos. So they did get me in to see him right away since he was there. Yep it was confirmed I had a blood clot in my left calf. Several hours had passed between the time I had my first appointment and the results came back from the ultra sound. That’s when I was asked if I was having a hard time breathing. And I thought for a moment and agreed. Then I had to make the hard phone call asking Willy to come home from work to run me to Devils Lake so I could get a CT done on my lungs. If blood clots were found I had the choice of being admitted there, or returning to Cando to be admitted. I chose the latter since my kids were still in school and they could come visit in the evenings. That night I had a full-blown panic attack. Just thinking of being in the hospital a month after my mother’s death was a bit much for me to deal with. I was in the hospital several days. One of those nights I stayed up for the nurse to come in with my midnight dose of injectable blood thinner. They came in to change the I/O on the bathroom door, but no meds…… I was in shock these nurses forgot to give a patient such an important medication. The next day when I brought it up, I was told they were busy in the ER. Yeah, my foot they were not busy, I could hear them laughing at the desk and if they had time to change out the I/O papers they had time to do meds. I got a half-baked apology. I was discharged on coumadin and had to have lab done weekly do the dose could be adjusted.
That went just fine until one week I was due to go in the next day for the usual lab work. But I began with pain in my left knee. It started as an ache, but by the time Willy got home from work a few hours later I couldn’t walk on it anymore. He took me up to the local ER to find out what was wrong. Since I had major reconstructive surgery on that knee as a teenager (in Singapore, Mt. Elizabeth Hospital) they put 2 and 2 together. With my INR, my history with that knee and the tests they could run they determined it was spontaneous internal bleeding. The doctor in the ER wanted to send me to Grand Forks to have my coumadin managed since Cando couldn’t. So I saw hematology there but the doc I saw also was an oncologist. She was from South America and was just a fill in for another doctor out on holiday. You could imagine how much blood she ordered. The results did come back that I had a half gene of factor V leiden from one parent. There was another test that came back positive but I can’t remember what it was. But it was known for giving false positives so it’s always redone at a later date. I did have that done later and it came back negative, so that was the only reason why I was able to get off blood thinners and wasn’t on them for life. But that came after my surgery.
So this fill in doctor also ordered a CT scan. Okay strange, but she wouldn’t say why other than a generic reason that wasn’t the real one. When we went back for the results she admitted to why she ordered it. Saying new research has been showing blood clots are sometimes early symptoms for cancer and she was looking for it. I had a spot 2.3 cm by 2.3 cm square on my pancreas. Of course, at that time I was on the pill for hormone reasons. Between the three it was the perfect storm, just like the movie. But one that would save my life.
That summer we took a family holiday to Wyoming for a bit more than a week to visit Willy’s older brother and playing the part of tourist on the way home. We made several stops on the way home and enjoyed being a family. Trying to forget the “spot” on my pancreas for a while until we resumed with the next step.
I didn’t want to deal with intrusive endoscopy if it wasn’t needed. That had to be done under general anesthesia in Fargo. I opted to have a PET scan first to maybe rule it out as a fatty (harmless) tumor. Ugggg never again will I have a needle stuck in that vein on the inside of the wrist. Major OUCH. But the results from that came back glowing on my pancreas. So now they knew I had something going on, but I hadn’t been diagnosed so I had to get a referral by a gastroenterologist. So yet another appointment was needed.
I will never forget that doctor. NEVER. I was only 39, just turned it a few months prior, at the time, and he felt and prodded my belly and I shall quote him. This is an actual quote. I was “chasing rainbows” you just can’t make that stuff up. I was chasing rainbows by having the endoscopy done and having a biopsy done. At this time, it had only been months since my mother’s death. According to him I didn’t fit the profile of an 89 year old man as that’s who primarily got pancreatic cancer. I was female and way to young. He was very confident in saying it was a harmless fatty tumor cyst. We opted to have the biopsy done in Fargo when I could get in.
The day came for that appointment. Just the two of us drove down to Fargo for that test. It was same day surgery and done under general. Because of where the pancreas and my tumor was located the only way to get a biopsy was by endoscopy. Something I would go through many times later after my surgery because of normal complications.
When I was awake and Willy was present we got the news. It was cancer. But it wasn’t the one that took Michael Landon or Patrick Swayze. He explained this one was the rarer type. It was slow growing and not common at all. That I would need to meet with a surgeon. This was the end of September 2011. My type wasn’t normally found this early, but had been found by accident. We had planned to have dinner at a little Indian (the country, not native american) restaurant in Fargo. But with this news it was like a bubble had burst and I just wanted to have a cry and go home.
Not even a year after losing my mother to brain cancer I had pancreatic cancer. Islet Cell Cancer also called Pancreatic Endocrine Neoplasm Tumor was the official diagnosis.
The next day I began my calls to Fargo to find a surgeon and get this done with. This news did not sit well with my father.
It was deer hunting and instead of calling me my father was calling Willy many times a day wanting updates and whatnot. Also, to encourage me to have surgery in Rochester. When out hunting phone calls is the last thing you want. Since we had gone on summer holiday out of state he flat out told my father that I was having surgery in Fargo because while I was in hospital he could stay with his sister or his nephew and save on hotels. Going to Rochester just wasn’t in our budget. Between hotels and the fact, it was over 500 miles away. That wasn’t what my father wanted to hear. That and his “research” told him you didn’t want a doctor who didn’t do this every day of the week and that was not Fargo. He was livid and began calling every five minutes. He wrote a check out for 5k to cover expenses.
I canceled the appointment that I had set up for Fargo to meet with a doctor there. I called mayo clinic and explained my situation. I had an apt with a surgeon for Oct 5th. So to break the news to the kids I told Kylie my eldest that we were taking her to her favorite Famous Dave’s (ribs) for her birthday on the 4th. I talked to the kids teachers and told them they would be gone 2 weeks tops. But not to send books because they could get lost in hospital and they sent papers to work on and assignments online for them. Little got done because Willy was out of his comfort zone barely coping at it was, and he didn’t have a clue on how to help the kids with school work so it was forgotten.
The kids had been to the mayo clinic twice before and the hospital so they knew their way around and were helping others who looked lost if they could. Just like others did for us on our previous visits. It’s a different kind of hospital, people help each other at one lost look. So now for three years in a row we found ourselves in Rochester.
I was slotted for surgery a few days later. It was a long 10-hour surgery for me. I remember waking up in recovery. There must have been a hundred beds in the room each with a nurse at its side. I kept getting lectured to breath deeper as I kept setting off the oxygen meter. Even when I got back to my room they kept me on oxygen longer because I refused or kept forgetting to breath deep and it set that alarm off very frequently. Apparently shallow breaths were enough to stay alive but just not enough to make the nurses happy.
My doctor felt confident he could do it all laparoscopically as he was the top doctor in his field there. My lucky day. Other doctors opened people up fully for the same surgery but he didn’t like to do that unless necessary. So I remember asking if I got stitches or staples. I had staples for my c-section and swore never again. I had stitches for my knee surgery but they were all internal and other than that and I don’t consider that really stitches and I had never had stitches before. The nurse at my bedside laughed a little and said I didn’t get either, I had gotten Band-Aids instead. The very same Band-Aid I might put on one of my kids for whatever reason. A bit shocked and relieved and yet confused I went back to sleep until that buzzer went off on me again.
I don’t know how many days it was after surgery but that’s when I heard of the death of Steve Jobs. And he didn’t have the usual pancreatic cancer, but the rarer, slower growing type. Later my doctor told me that it was still just as deadly as the other if not treated.
At the time of my surgery the tumor measured 3 cm by 3 cm by 4 cm and was much larger than they wanted to see. Which is why I was slotted for surgery right away rather than wait. I didn’t need further treatment because it was caught before it could spread they didn’t think it would come back, but would still need to go through routine CT scans to keep on top of it. Seeing my mother die from cancer, I chose to have a few of those CT scans and if it came back later I didn’t want to know. Not sure if that was wise or not, because every twinge I do wonder. What if…… but I don’t know if I could go through what my mother did. There is no dignity in death, and it doesn’t matter where it is. It’s the same everywhere. Death in the end is not pretty, its cruel and harsh, and Hollywood makes it look so romantic. It’s anything but. Years later I heard of that mother with a brain tumor that planned doctor assisted suicide so she could exit life with dignity with her family present. But she didn’t want to put her family through what I knew first hand they would. Brain tumors are harsh, as the brain controls the entire body. I respected her for her choice because she made that choice for herself when the quality of her life went down. I often think of that woman and wish more states offered that. I know you most likely disagree being a nurse. But my view is based on the loved ones caring for the patient 24/7 and being family. But then I’ve known about euthanasia since I was in grade 7 when I did a paper on it, agreeing with it. I don’t know if I would ever make that decision if faced with it, but I do think it should be an option.
Before I had surgery, I set up a caringbridge account. It wasn’t just family and friends but it was also customers of mine from the many wet shaving forums I was a part of. But I had also created and formed a soapmaking forum that had been active for several years prior. So it was my co-admins, moderators as well as forum members that were concerned for my health and wanted to know what was going on. But there were two that got personal calls and text updates from Willy. They began as customers that I met on the wet shaving boards but soon became close friends with them. They were not just my friends, but friends of the whole family including the kids. That might explain more of the medical side of things I don’t remember since I know that is an interest of yours being a nurse.
I think you might have to log in to view, but mine is open for anyone to read. Willy made most of the updates.
My father and brother did drive down to be with Willy when I had my surgery. But my little niece also came with her daddy. She must have been in grade 1 then. I totally do not remember this, but apparently she asked me about all the blue on me, and I told her I was turning into a smurf. I do not remember but all three of my kids swear that’s what I said to her question. Because of the surgery and it’s length I had more IV lines than what should be legal. One was put directly into the vein in my neck, but that was removed before I left the OR. But my wrists, if I had been released from the hospital one would have thought they were track marks. It was that bad. Both wrists were marked with multiple tries of them getting IV lines in. Sucks being a hard draw. Those two lines were removed when I left recovery.
The mayo clinic it’s such an experience. Even down to maintenance and the cleaning staff. Everyone is amazingly nice and chatty. Not a bad nurse in the batch. Of course they don’t have time for anyone that isn’t willing to give 110%. There are always others who are willing to do the job if others don’t want to give their all.
When the doctor and his med students come down the hall it’s like the mafia. All in suits and perfectly groomed. Walking in their lineup, it’s easy to pick them out. But super friendly as well. One night pretty late as it was close to midnight, I had taken a walk down the wall on Willy’s arm. We still walk that way when away from home when walking together. My arm hooked in his, it’s become habit. But I had gone pretty far and we found a wait room to sit for awhile. My surgeon came along down the hall. He had been later with a patient in OR and wanted to make sure they were okay in their room before he went home. If a small percent of America had his dedication for their jobs as he did, this place would be a much better place. That man took dedication to a whole new level. If he wasn’t at the hospital, he was at the hospital. And if he wasn’t at the hospital he might be out of town for the day doing a training conference at another hospital. There was a reason why he was the top pancreatic surgeon. So that night we had a normal chat with him as a person, not a doctor.
One thing with pancreatic resection is that complications are very normal. At the mayo they try to reduce them as much as possible. But sadly, they also get stuck trying to fix what other doctors attempt (in other cities and even states) to do without success, all because they don’t have the training and experience in dealing with the pancreas on a regular basis. Sewing up the pancreas after any type of surgery on it is a lot closer to sewing up a piece of jello. That makes it quite easy to understand, and also makes me very glad that I didn’t have surgery done in Fargo.
Pancreatic leaks are common and almost expected to some degree. And I had one which was a complication I wasn’t expecting. I thought I would have been there two weeks tops and feeling pretty good post-op. That was anything but the truth. My blood sugars were off the charts and that was also expected. Nature of the beast when you mess with it surgically. But mine didn’t want to behave so they called their advanced diabetic team to check out my chart and make recommendations. The other thing was that your stomach is paralyzed for surgery. That is not a function that returns within a few days. It took about four or more months for me. So because I wasn’t eating more than three bites at a meal, they stuck their dietitian on me. Her recommendation especially since protein is so important for healing was to have ensure delivered in the afternoon. Meals had to be called down to the kitchen. I had a full menu to pick from. Then the kitchen staff were really good about saying how about this this and that. Or we have fresh whatever fill in the blank, do you want that? I was barely eating anything and they kept wanting to shove more food on my tray. But then when my mother was in the hospital she had issues with appetite. She would order her food, it was made and brought up by kitchen staff. They don’t use meal carts there. By the time it came she didn’t have any interest in it anymore. So the nurses suggestion was to order 3 or 4 different meals and see which appealed to her when it came and they ended up doing that, but then dad just ate with her. But it was done so she would actually eat something. If you ever drank ensure or smelled it then you know how gross it is. *shivers* I couldn’t stomach that at all, so they started sending a clear juice type one and that tasted better if ice cold. But even still I could only manage a few sips. I couldn’t wrap my brain around the fact I was overweight and yet I was being made to drink ensure. Then when they took me off the IV fluids caused another problem. I had major issues getting enough liquids and I still struggle with that to this day. They had a patient kitchen so Willy was always getting me fresh OJ and cranberry juice. He would mix them and put them over ice and I was able to drink a bit more of that. But soda was a big fat, NO. My stomach hated it, and I still have issues with carbonation in soda. I’ve even gone to the length of shaking a soda bottle up, opening it up to release the carbonation and repeating until the carbonation is removed and drinking that. Which is why tea is my preferred beverage. Hot or cold.
I can’t drink milk, it grosses me out unless it’s with pancakes or French toast. But that is because of our milk in Indonesia. The only safe milk was shelf stable ones that were imported from Holland. The local IndoMilk wasn’t safe. I mentioned the friend that was a pathologist for the US government. That local milk in the carton was tested positive for manure in the milk. But we only knew that because of that friend. Others with the government were told, but no other expats. So my mother began using a powdered milk. But it wasn’t like the skim stuff here. It was whole milk in powdered form. KLIM milk also from Holland. Whispers spell KLIM backwards, creative huh? It wasn’t like fresh milk, and it wasn’t as gross as skim. But I wasn’t a fan of milk to start with, so I stopped drinking it about then.
I can’t stomach a lot of water either just because of my youth once again. The water wasn’t safe there at all, so there were two choices, bottled or boiled. In those early years just about everyone boiled their water. We had a pot that had to been at least 30 gallons if not more. It just wasn’t fit for drinking as a glass of water. But was good enough for cooking or brushing your teeth. No one in my family ever drank a glass of that stuff. We drank a lot of tea that was made the old-fashioned way, with tea bags. My father affectionately nick named the tea sewer water. But then open sewers were the norm everywhere. Later we had an aqua machine at our house and the aqua man came weekly to drop off new bottles (those huge ones on top of water coolers) and take away the old. Then our propane was the same way. Each bathroom (3 in our house) the kitchen, the clothes dryer all had their own propane tanks. Even with bottled aqua we still didn’t drink it.
The water was barely safe for bathing. If you wanted a bath you needed to add an iodine solution to it. Affectionately known as lugoli. But then our vegetables and fruits were soaked in water with lugoli as well before we could consume them.
Being diabetic juices are out unless my numbers are low. So I still struggle with what to drink that doesn’t taste nasty. Artificial sugars that diabetics use because they can’t use sugar, aren’t good for a person, and they leave an after taste. So it’s a daily battle not just what to drink but getting enough. I’m pretty sure I run in the dehydrated line more often than not.
But that pancreatic leak was an issue. It measured 10 cm and my body wasn’t absorbing it. I had to have multiple endoscopies done to put drains in, that would drain directly into my stomach instead of external on the body. Then they would get plugged so I would have to go under general again to fix it. I felt like death warmed over. Given my situation there was only one doctor at the mayo that my surgeon wanted and would let work on me. He had a particular skill that the others didn’t have and my surgeon was very particular on the care of his patients. Even if he was having someone else work on his patience because of their skills. So I had to be fit into his schedule, and I’m thinking strings were pulled.
After one of those procedures, I was complaining of pain. Extreme pain. Worse than childbirth pain. So when doctors ask you what your pain level is, I have a hard time with it, because I experienced the extreme and nothing compared to that. They sent me to x-ray because they were afraid something was left inside of me. I was screaming loudly in pain, that’s how bad it was. Turns out the OR staff didn’t give me enough pain meds out in post-op. Someone was in hot water over that one. That experience made me wonder what medical care was like a hundred years ago, when they didn’t have pain medication or enough to go around. Especially during times of war. How did patients manage pain levels, and I only had an endoscopy with multiple drains put into place. It makes me ill thinking of the suffering people went through back in the day.
The kids school work except for Kylies because she was older was forgotten. I was sure I was going to help them post-op but that wasn’t the case. And two weeks there came and went. There was another family there with their father (he was later 60’s) having pancreatic surgery. They were from North Dakota as well but the southern part of the state. Willy and the kids got to know them well. The wife of the gentleman was the grandmotherly type. When her kids came down for the weekend as they would rotate as to who was with her, they were constantly bringing homemade sweets. Of course the grandmotherly type she made sure that my kids got their share as well. As they spent their days in the wait room at the hospital. I think the kids gave her comfort as well as it gave her something to focus on instead of worrying night and day about her husband. My kids had their things with them, but after so long in the hospital they were getting board of their stuff so she went out and bought the kids games to play with. I swear my youngest ate the homemade pizza at the cafeteria at St. Mary’s hospital everyday single day.
While there the nurse that was sympathetic did give me a free pass for a couple of hours. I got to go out to dinner with the kids. We went to Olive Garden. My stomach was still paralyzed so I only nibbled off everyone else’s plates. I still had my IV line in the top of my hand, just wrapped up so I could leave for a while. I’m glad that I was able to go out with the family, but the experience wasn’t anything to write home about just because I still felt so lousy. But the kids were super excited that I got the free pass. I still haven’t been able to enjoy Olive Garden since. Not that I exactly have one close by because I don’t. The closest is in Grand Forks which is about a 3 hours’ drive. Devils Lake even lacks restaurants. But then I can be a tad picky, but hey when you order an omelet and they use plastic wrapped cheese instead of a shredded one and the veggies are barely warm let alone cooked. (thinking raw onion and green peppers here) I tend to not go back. There are only three that I will frequent at any given time. The Ranch, a steakhouse that takes pride on their chef’s accomplishments. Charras & Tequila which as you could have guessed a Mexican place. But it’s authentic and most of the staff speak enough English for the job. But it’s not tex-mex and amazing. There is a similar place in Rugby (geographical center of North America) and it’s a family run Mexican place. It’s family run, and I have had wait staff barely speak any English but the food makes it worthwhile. Then back to Devils Lake, the third place is a Chinese place family run like most. But I love Asian foods since I lived there for so long. But in Fargo are a couple of curry houses, and if it was only closer that would be my pick almost every time. On the kids birthdays we go out to eat, but the day before or after I give them free rain of the menu. And coconut curry chicken with basmati rice makes that list every single time. I don’t bother asking anymore because I know the answer. Case also has birthday pie instead of cake. That kid could eat pie every single day and never tire of it.
Willy was getting restless sitting in the hospital, and kept asking the doctors when they would release me. I think they got tired of him asking. So I did get out one night with the promise I would see them in the office daily and not leave town until they said I could. But that was short lived and I landed back in the hospital the next day. I took a turn for the worse that one night they let me out. My drains plugged once again causing it to get infected and I was pretty sick when I was admitted back. But they finally let me go just in time so the kids got to go to school on Halloween and trick or treating with friends.
I had only been home maybe a week if even that. I remember going to the Devils Lake ER because I didn’t trust the one in Cando. I needed hydration desperately and the doctor looked at me really strangely when I told him I was there because I needed IV fluids. But after he heard my story, checked me out he totally agreed. So I got that and was let go. The next day I felt something was off. I didn’t know what it was but something was definitely not right. So I went back to the same ER wanting a CT scan. Not something someone usually asks for. But I had good reasons on that leak. The doctor but a different one than the night before agreed given my history and how I was feeling. Oh how I hate that dye they shoot into you for scans. The leak hadn’t changed but his concern with the pneumonia in my left lung. Ding-Ding for having pneumonia for the 2nd time in my adult life. I carried my meds in a gallon size zip bag there were that many of them. I always made sure any doctor I saw knew I was on coumadin. I hadn’t needed a primary care given in the past so I just saw whomever had time. But I had tried to find someone as a primary care giver in devils lake without success. It had nothing to do with they were 99.9% foreign, as I actually like foreign doctors and feel their medical training can be much better than american ones. But some also seem to get their degree out of a cracker jack box, american ones included. But it was their personality and knowledge on my specific needs or lack of that rubbed me the wrong way. So I was still in limbo with a local doctor to take over my needs, coumadin was being managed through grand forks and Rochester. But anytime I saw a doctor that was the one thing I told them straight up was my blood thinners. Since it’s so critical. That stupid ER doctor failed to tell or remind me that antibiotics and blood thinners do not play nice together. That I needed my INR checked closer than normal for safety reasons. It also didn’t help that it was a Sunday and my local drug store isn’t open at all on the weekend, so I was forced to that script filled at a drug store in devils lake where they didn’t have a clue about any of my other meds. If it had my regular drug store I would have been given verbal warnings to have my INR checked to make sure it doesn’t get out of whack. I knew I couldn’t drive to devils lake myself, so I mad an apt with someone local just to see if this pneumonia was going away. I didn’t want to have to ask kylie to miss school to take me to see a doctor and Willy had missed so much work as it was, but with a boss that made the numbers on the paper trail work regardless of the time he took off to be with me. So that’s why I saw someone local. Sadly his boss left the company a few years ago because he really cared about his employees but their families as well. When one guy had a tornado come through and his house took a direct hit, he sent a bunch of guys from work and tractors, bobcats, payloaders, trailers and whatever equipment they needed to help with clean up. All on the company timeclock and using their equipment as well. Helped the family out with anything they needed until insurance and whatnot came through. Bosses like that are few and far between. But they are generous with equipment. While we have a snow blower to deal with regular snowfall, a few times during the winter the guys bring haul tractor (enclosed cab) to Cando on a trailer, then our driveway as well as the few others from work who live in Cando, driveways are winged out. . . Then haul it back. If someone needs a pickup or a covered or open trailer it’s there for them to use for their personal time and needs.
But I made a random appointment with a local PA since I couldn’t get anywhere else myself. I have good reasons for not trusting my local hospital and that includes a doctor that isn’t there anymore. But when kylie was a baby (barely over a year) she got the flu. I had her into the ER so many times and they kept sending me home telling me to give her petalite. My concern was dehydration. When they couldn’t get an IV line in because of just that they sent me home once again. So we went back an hour later. Where they finally admitted her, and got a line into her head. But before they managed that the doctor and yes he had his MD, told us, new parents that if they couldn’t get a line in her head they would drill a hole in her leg bone and get a line directly into her that way. I’m sorry but WTF comes to mind even now as I think of it. Why would you tell any parent that especially since we had been in there so many times trying to get help but was sent home for our troubles. That started the era of nurses wearing gowns over their scrubs when she needed medicine. They ended up wearing most of it. She had mystery infections going on, that we never figured out. Her white blood count would go up. She grew out of it and hasn’t been a problem since. But oh how I hated that doctor. But he did give me a laugh once, indirectly. I had to take one of the kids in one weekend for one reason or another, but we were waiting and another lady came in to be seen with her kid as well. Well in comes doctor culver in jeans, leather black jacket and a motorcycle helmet under his arm. He greets me by name as we are known at the hospital clinic. That and it’s just flat out a small hospital and town so everyone knows most everyone. That lady was baffled and asked me if that was the doctor. I chuckled and told her that it was, the one and only. He was a horrible doctor, but he was a nice person.
The doctor or rather PA I had made an appointment with that day, took one look at me and knew I wasn’t going anywhere. She had lab come to me in the exam room and told them to put my blood work in first as she wanted it back as soon as possible. The she wanted to know a bit of my history and when I said I had surgery in Rochester she wanted my doctors name there so she could contact him directly. She told me then she knew flat out that she didn’t know where I was going to go, but I was not going home. I believe I called Willy sometime at that point. So since she didn’t know if I was going to be sent to another hospital or back to Rochester and she knew how lousy I felt and wanted me comfortable until they knew what to do with me. So she had the nurse take me back to the hospital part, a short distance away and set me up in the ICU (cough~cough) room. It’s a joke but that’s what they call it and it’s right off the nurses station. She wanted me watched closely but also away from those that were actually sick in the hospital. I was not allowed in the hall at all for fear of picking up germs. Then when it came back that my INR was high, and my blood was dangerously thin, I was told I could only walk to the loo. But at that point I didn’t care.
My doctor was in constant communication with my surgeon in Rochester. I had to have lab drawn multiple times a day. Plus IV lines of course. At one point they hooked me up to some IV potassium. Have you ever had that stuff? It’s wicked in a very bad way. Oh it burns. The nurse did laugh when I complained and told her I couldn’t take it anymore. She was wondering how long it would take me to cry uncle. So she took that off, then came back with oral potassium. But not a pill but it was a liquid. I don’t know how to even begin to describe how bad this stuff tasted. (shivers) Again the nurse was wondering how long it would take before I would complain how bad it tasted. I couldn’t even drink it fast. So she took that away and must have headed down to the kitchen. She returned with a banana and just told me to eat as much as I could. That only amounted to about three baby bites, but she had what she needed to document it on the paperwork. But the process was never repeated again.
Then because I was high risk for blood clots because of my history, and I wasn’t allowed out of bed they had to put those puffy things on my legs that inflate and deflate. That’s a weird feeling.
I think I had been in the hospital about a week, when my doctor came in to talk about my labs. They suspected possible internal bleeding. But they didn’t know for sure and it could be other things but Cando didn’t have the ability to find out either. So my doctor in Rochester decided it was time for me to return back to him. Oh did I mention my temperature was 104. Something. Between .1 and .5 but that’s just a small detail when it’s 104. So Valley Air Ambulance was called to come get me. It was a bit of a wait for them to arrive because of the distance. But while I waited everyone else was jumping to get everything ready to roll.
And of course I would have to get the new ambulance driver Cando had. Had I been able to fly out on a chopper the helli pad was right next to the ER doors. But no, I had to take a ride out to the airport. Our airport isn’t a manned one it’s that small. But it is about 2-3 miles out in the country. For non-emergency the standard is no siren. But nooooooooooo this rookie must have wanted the attention because it was blaring loud and clear. Of course the part of the highway needed to travel to the airport is about a mile long, before you turn east and out of city limits to the airport. That road is full of pot holes and I think he hit every last one of them. Since that road has been repaired. Since it’s highway 281 which goes from the Canadian border to the Mexican border it’s unusual they let it get so bad in town. Because that highway is transcontinental it gets federal money so it’s kept in top shape.
The flight was uneventful, other than a little light chop. But then I have flown enough not to freak out about that. The nausea had been bad for weeks, and so I needed to be re-dosed in flight with pain meds and Zofran. There must have been crosswinds in Rochester because the landing was a tad rough and felt like he might have had to crab slightly. But we made it and then I was handed off to Rochester’s Gold Cross ambulance. That ride was quite long actually. But the ride was smooth as they run those roads night and day. It’s shocking at how their ambulances fly by so frequent. Then once I arrived at St. Mary’s hospital I had to go through the ER. What a difference from Cando. Lots of those that arrived by ambulance waiting in the hall on gurneys. But I was given priority since I was headed upstairs. But the issue was getting a bed. I had to be taken to a different building and floor. But I was only there a day before being transferred to my doctors building and floor. The nurses were not happy to see me back. But I had a really awesome male nurse. Well Willy thought he was awesome. Those two talked hunting every chance they got. He even brought Willy in some of his venison jerky he had just gotten back from the butcher. I thought that was really nice of him but maybe he was just happy to have someone to talk guy stuff and hunting with. He was good at his job and clearly loved it. He was a younger guy.
While I got to take a flight back to Rochester Willy had to make all the phone calls to family and friends. Take the dogs back to the kennel. Oh she made a killing off of us. That was when we only had 3 dogs. But my brother and his wife offered to take the kids so they wouldn’t miss more school and I didn’t know how long I would be gone and they had just gotten back. So he had to pack for himself as well as the kids. Give the SIL instructions on all of Case’s meds was also needed. Then he loaded up on snacks, topped off the tank and headed down the road. He drove faster than the speed limit but then everyone does in MN. So he made decent time getting down there.
But before he got there I had to go through a battery of tests. That wasn’t fun, I felt sick as a dog and just wanted to go to sleep. It was a very long day. The nurse was in my room and I was being given a lovely, ice-chilled cold bag of platelets. Now that I think about it, they must have been low for them to do that. Unless it was a precaution if they thought I was bleeding internally. But I know now that I run high platelets, they figure because of my spleen being removed.
.... working on the continuation