Let's Shoot the Moon

To "Shoot the Moon" - take a risk which may result in great rewards

Gratitude

This is the end of a very difficult day. We started out by signing our closing paperwork – I was more emotional about it than I was expecting – and then our agent, who has been like family, did a very kind thing for us….That broke the waterworks dam for me. Later we had lovely friends come by, as they have been doing since Monday, and help pack boxes. The whirlwind made me feel a bit unsteady but I was happy to spend time with them all.

This evening though, a few friends were going to help us take things to our neighbors to set up a yard sale for tomorrow and Saturday. There was a lot to do and while those present were eager and willing we still needed more folks. And then the cavalry came. Two people I’ve never met and one that I’m slightly acquainted with came to help. That acquaintance has a penchant for lifting heavy things! It’s ok, we didn’t abuse him too much, I hope, and he got a free futon out of the deal. All told there were 4 ladies, 4 gentlemen and 4 little girls helping or just spending time with Ian and I. Our neighbor also helped!
 
I am overwhelmed by the generosity of them all and as much pain as both Ian and I are in physically and emotionally right now it would have been completely overwhelming without all of these amazing people helping us. I love you all and cannot thank you enough. <3

The Giving House

It’s 4am and I can’t sleep… again. I have my father’s heightened ability to anthropomorphize things to the nth degree and it seems to be haunting me.

As you may know, we are in the midst of selling our house – our beautiful, 150 year-old, storybook house with matching property. It’s a grueling process to sell a house, I’m quickly discovering, made even trickier by it being such an unusual house. The market is going nuts right now in Yakima as it is likely doing in several parts of the country and we’ve been told time and again that our house will sell “in a heartbeat!” Many houses are. Our neighbor had three offers on hers in just 2 days and ended up with $10k over her asking price! Perhaps we were naive to think it would go so quickly but I do think we’ll be able to head to Pittsburgh before the summer has completely ended, probably mid-August.

To me though, this isn’t just a house or an amazing piece of property hidden away in town. This house has been a friend to me. Unfortunately, I feel I’ve abused our friendship with all the difficult times that I’ve/we’ve had here but it hasn’t seemed to mind. Because where I live is so significant for me I know that I wouldn’t have been able to keep a smile on my face while staring down another heart surgery or another trip to the hospital if I hadn’t had this healing retreat to return to. In fact, Ian once talked me down from dilauded withdrawals by asking me to think about what we were going to be planting when I got out of the hospital and what would soon be popping out of the ground.

How can I leave a friend that has silently supported me with beautiful flowers, strong trees, warmly lit rooms and ample opportunity to show and live in my creative nature? How do you step away from the spot where you said “I do” and the yard that your beloved pup ran in from the time you brought him home to the time you had to say goodbye? How do you part from the owls, lilacs, raspberries, grapes, colors, sounds and smells that return year after year to renew your soul after a hard winter?

I think anyone who’s visited us knows that this place has something different about it. I don’t know if it’s mostly what it possessed before we got here or if it’s a shared presence with what we have brought. We haven’t furnished it with mass-market pieces. We haven’t painted it with the obvious colors. We haven’t stayed with one era of style. And yet it’s easy to see that it all goes together, it reflects us, it is part of us. I know that decorating can be achieved pretty much anywhere, in fact, I’ve joked with Ian saying that nearly every place I’ve lived in I’ve been unable to host a lively party because everyone ends up so relaxed from the lighting and music and comfortable furniture, but this house would have a personality even if unfurnished.

Yet I feel, we feel, a sense of duty to this house. It has a long and unusual history and each person that caretakes for it really needs to be of a certain sort. There’s a love and responsibility that goes along with an unconventional house and this is one of the most “unconventionalist” that I’ve met. We’ve had brief moments of meeting people as they come to view the house and I’m waiting for that spark, that feeling in my gut that says this person gets it. How could I leave my friend in the hands of someone that does not arrive with that banner across their chest?

If only I knew that the house was going to be ok and that this abyss we’re headed into was a step and beyond in the right direction. I know what you’re thinking, “Ah, so that ‘s what this is all about!” and while it is a large chunk, yes, this isn’t some sort of psychological transference, just a gigantic bullet on a long list of concerns. I feel like I’m being yanked in so many different directions and it becomes a challenge to remember why I’m putting myself through this. Ian’s health, my feeling of responsibility to the house and this wave of sadness from losing my home and a couple of dear friends are what wake me up in the middle of the night, the details about moving (packing, coordination, timing, etc.) are pretty overwhelming, anxiety about living in someone else’s house for a period of time is unsettling and all of the unknown that lies ahead feels pretty crippling. It’s funny though, I feel I can handle quite a bit of change with a good amount of relativity but when it comes to my base being uprooted I lose all sense of stability. I think I’ve faced so many things with patience or determination knowing that Ian has my back and this house will soothe me in the roughest spots without judgement and without the need to go over the details. As someone without many close friends that knowledge has given me the peace and mental fortitude to persevere. It’s hard for me to imagine conjuring up strength in someone else’s house or in any other house, for that matter.

I’ve lived in places that felt as if they were slowly sucking out my happiness – feel free to enter a Harry Potter/dementor reference here – and swore to myself that if I could ever leave that kind of situation I would never return. This has been the first place where I felt inspired, taken care of and recharged with each day – a “dream home” of sorts. I know I’m an adult, I know that I’m in control of what I do in my life and where I live but you have to understand that there have been so many times where I’ve been very alone and have lived in a place that didn’t feel loving or inspiring or comforting. And when you add that to my life being threatened during those times… it’s very weighty and makes me terribly frightened to even revisit those years in my head. I know I don’t have to live in a “dementor” house at this point but I also know that it’s never completely out of the question. I had ended up in those places before because I had run out of options, simple as that.

So, my overwhelming urge to make sure I do all in my power for this house as a repayment for it’s “kindness” and “love” is stopping me in my tracks. I wish I could lessen it, I wish I could move on to more pressing matters in this process. “It’s just a house” a few people have said. And it is a house… but it isn’t “just”. This has been my refuge, my pride and my great inspiration to get well enough to leave the hospital.

I’ll be leaving a “handbook” for the next owner with bits of history, advice and information: how to roast hazelnuts, why there is an unpainted patch revealing old-fashioned wallpaper in the front room, how to best use the baseboard heaters and fireplace in the winter to insure toastiness without a huge power bill, why the back step has written in cursive “Welcome to Glad’s house!”, etc. Perhaps the new owner will be given a heightened connection and a need to treat the house well from that, perhaps not.

I’ve debated having a conversation with the buyer of our house. It could go one of two ways; they could be lovely and talking with them could reassure me that we’re leaving our home in loving hands or make me realize this person/these people don’t know what they’re doing and the house is likely to fall into a state of disrepair. I don’t think I could handle the latter… We don’t have much choice when it comes down to it, though. I guess I shouldn’t be saying that… but we need to get on with our lives; recuperate, get better healthcare, find things, places and people that inspire us. It’s time but this weight is like carrying concrete blocks as I walk though mud. How can I hold on to the memories and let go of the weight?

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The low down, pt. 2

Hello again, friends. Hopefully you’ve had time to enjoy a bit of summer since the last time we talked (aka I talked at you). It’s hot here in our neck of the woods but we’re really fortunate to have a house that stays pretty cool without AC. (It’s called “trees” and I highly suggest planting as many around your house as possible because trees are great for so many reasons!)

So, let’s get back to the “great” time Ian and I had in our last trip to OHSU so that we can move on to more interesting topics.

As you may remember my transplant doctor, Dr. Gelow (pronounced GEE-low) and her right hand lady, Suzanne, came to my aid and got me an appointment to have my IUD replaced in OHSU’s Women’s Health Clinic.

On the 19th we drove over to Portland and enjoyed our room at McMenamin’s Edgefield hotel. Because we’ve stayed so many times and they have a frequent visitors program we ended up getting our room for free! And what a room! We had a bedroom and a lovely “living room” on the corner of one part of the building. Our windows looked mostly into the trees and it was deep green and cool. Note I did not say that we had a bathroom. That’s one of the quirks of most McMenamin hotels. Since they’ve been put into repurposed and usually very old buildings there are communal bathrooms except for a very few special accommodations. Now this doesn’t mean that it’s like showering and doing your business at the Y. Instead there are clusters of individual bathrooms all together in different parts of the hotel. Each bathroom has a shower or tub, toilet, sink and counter – everything you’d need and all to yourself while you’re in there. See, no big deal.

We walked around the grounds where they grow the produce that goes into the restaurant’s food and, I believe, many of their beers and spirits. They have a little, tiny golf course (which we’ve never used) and a couple stages. They ALSO have a spa with a salt-water soaking pool outside. After we rested and had a lovely dinner we went to the pool. Because there happens to be a bar at the pool the crowd can sometimes get a little rowdy. Doing bellyflops in a 4ft. deep/15ft. wide body of water is probably not the best idea, nor is it a good time for all the sober people trying to relax. Luckily our crowd that evening was mostly above 50 (not that that’s any guarantee) and in couples (again…). Everyone seemed to behave themselves for the most part.

The next day we headed to the upper campus at OHSU. My first appointment was down at the water but my IUD placement was at the top and it seemed a better idea to park where I wouldn’t have to walk far to get to the car. We ran into Suzanne at the tram stop and chatted all the way down, then saw her immediately after with Gelow!

The appointment was simple, we were just checking in, making sure that her communication with UPMC in Pittsburgh had me all set up, did a bit of paperwork and said our goodbyes with lots of hugs. Both of them seem like ladies I could hang out with as friends and they promised to come up with some reason to get to a conference in the Pittsburgh area so that they could see us.

Again, we ran into Suzanne leaving to get onto the tram. Her office is on the hill and she came to the waterfront just for little ol’ me. When we parted she suggested having lunch together the next time we come to Portland. I guess I wasn’t the only one feeling the friend vibe.

My next appointment had me meeting Meg O’Reilly for the first time. I was very impressed. She was extremely thorough and spent quite a bit of time with me. The student who was accompanying her, Ruth, will get very good experience at her side.

Alas even with all the good feeling floating around I had come there for a very “uncomfortable” reason. It’s a good thing that IUDs only have to be changed after years of use because I really don’t think my mind  would allow me to do that even once a year. I won’t go into too much detail, well I might, but it was incredibly painful, incredibly. First of all there is a tool that puts a perforation into your cervix…. ?!?!?!?? She tried to use an alternative but my anatomy said no. Immediately after using said tool she had to cauterize the perforation to keep me from bleeding.

The extraction and insertion portion… well, how can I possibly describe it. If you’re a woman it’s likely you don’t have an IUD and don’t know how it feels, if you’re a man you really don’t know how it feels and even if there’s something comparable with your anatomy I wouldn’t know. The idea with extraction is to have you cough so that your internal muscles move in a way that will allow the IUD to come out. It’s quick and painful but after the fact so… not as bad? Sort of. The insertion is preceded by a measurement that is almost as bad as the insertion itself. “A little cramp” is what I was told during the process. Uh, no, not a little cramp. It felt as though my insides were being crumpled like a wad of paper and then clamped with something sharp, like a bear trap? Quick inhales couldn’t be helped and a creeping nauseousness began to make its presence known. And then another “cramp” with insertion brought back memories of the year before when my ruptured cyst sent me into waves of nausea or wanting to pass out – too much pain for my body to decide. (I believe I ended up choosing both.) It was a quick revisit to that memory thankfully but I was left with the impression that someone had tried to scoop out my insides with a grapefruit spoon followed by a swift kick.

Ian looked at me with sympathy – yes, that’s right fellas! he was IN THE ROOM with me! – and got up to hold my hand. Dr. O’Reilly mentioned that she had had hers replaced a couple of weeks prior and understood what I was going through.

Just to make sure everything was where it was supposed to be O’Reilly brought in an ultrasound machine. Using the wand she located the IUD and said that it was exactly where it needed to be (thank god!), but she also noted that there seemed to be a whole lot of fluid at the front of my pelvis, enough for her to be concerned with. She decided to have me go in for a more in-depth ultrasound before we left to go home. She included that there would be no need for it to include an internal ultrasound because the amount of fluid would make everything very easy to see. (Gosh, no internal ultrasound after all that IUD business? Darn!)

So, back down the tram for us where I had blood work done and the ultrasound. The ultrasound images looked like the bottom of the ocean, like this image on the right but with the water being black… kind of like this ultrasound image (the one on the far right). Now, these are just images I found online so if you’re a doctor please don’t write to me and say “Holy cow! Look at the horrible thing you’ve got going on there!” Like I said, these are not my insides.

 

When that test was all finished up I got word that Gelow wanted to get an echo done just to make sure. So, we went back to the cardio floor and I had an echo done. Usually echos are pretty swift but with artificial heart valves each one has to be looked at for an additional 15 minutes or so. With three of those the test gets a little lengthy and lying in the dark with someone pressing an instrument on all your scars and your arm falling asleep it’s a twisted game of pain vs. “take a nap”. Eventually we were free to leave the room but to wait until Gelow saw the echo.

After waiting a bit and playing phone tag with O’Reilly and Gelow and getting snipets of not so great news I got a joint call from them both. The echo and ultrasound look fine but my carcinoid specialist, Dr. Pommier, wanted still more testing and so did Gelow. Apparently the fluid could be some sort of shunting in a condition called chylous ascites and could lead to all sorts of complications. He wanted to perform a paracentesis, or removal of some of the fluid from the pelvic area for testing, but if my INR (blood thinness) was above 2.5 I would have to be hospitalized. Well, here’s the thing, my INR is supposed to live between 3 and 3.5 making it waaaay too thin to perform this test. Hospitalization would need to be done to have my system trade off coumadin (a long-acting pill blood thinner) for heparin (an IV blood thinner that can quickly leave the body). Paracentesis is done with a cartoon-sized syringe right above the pubic bone. Even though I was half in a coma the one and only time I’ve had it done before I still remember having it done very clearly.

On top of this great news Gelow wanted to get a very good look at my heart valves using a fluoroscopy. A fluoroscopy is like an X-ray movie. Metal things show up remarkably clear in this test. The image on the left is like what can be seen. Mine is incredibly more clear and interesting, if I do say so myself. You can easily see each mechanical valve doing it’s job as well as all of the wires and bits of metal that are still inside of me. It’s amazing and sometimes a little disturbing.

So, here it was, past 5pm and all I wanted to do was go home and recover. I mean, for crying out loud, we parked close to O’Reilly’s office so that I wouldn’t have to walk too far to get to the car! Pommier needed to do some checking with other doctors so the paracentesis would have to be on hold for a minute but I would need to go back up to the main campus for the fluoroscopy.

At this point Ian and I hadn’t had lunch and were running out of steam. I went to find the imaging lab and he went to grab some food. (I later found out that he ran into Suzanne yet again and chatted with her!)

I’ve been to this particular imaging lab more than once and have always been surprised by how cheerful and friendly everyone is. It seems incredibly out of character for a lab of any kind. A technician named Annie came and chatted with me and brought me a “bunny suit”, a gigantic, paper suit to go over my clothes as well as a paper shower cap type head covering. We walked into the lab and I laid down. Music was playing and I had been greeted like a new guest to the party. Soon I could see all my mechanics bobbing around on the screen, but it didn’t take long to notice one of the doctors in the room point out to a technician that a valve wasn’t opening regularly. “Which valve is that in the middle?” I asked. It was my tricuspid, the same valve that had almost completely seized shut in 2012 due to a blood clot, I had almost died. It was only opening about 75% of the time, the other beats were half-baked attempts if that. I began to panic a little.

Back in the waiting room Annie sat with me as we waited for Ian to arrive. She could see I was upset and tried to respect that as well as making attempts to assure me that I had some great doctors looking after me. She went back to the lab not long before Ian arrived with food. We were waiting for Gelow to come and talk about the test.

Apparently Gelow was in a meeting but we were joined by Dr. Mudd, another transplant doctor on the team who was very familiar with my case. He sat and chatted with us as equals knowing that after everything we’ve been through we are well-versed in the medical terminology that surrounds our lives. He wasn’t worried about the tricuspid valve because, as he put it, I was only there for an IUD placement. “You weren’t complaining of new and overwhelming symptoms and the valve does seem to open and stay somewhat closed due to your inspirations.” So, breathing was causing things to move as they did. We chatted more about various health things and the move to Pittsburgh. “You need to be at a university institution,” he said. Because of my complications and the way medicine can change in an instant it’s important for me to be where that information can work to my benefit. When he left we were finally allowed to go home.

Our long and frustrating day ended with burgers at 10pm that night back in Yakima. I was not feeling so great.

It wasn’t until yesterday that my bleeding from the IUD began to subside and Pommier got back to me about the plan. Two weeks seems like a long time for both. Pommier thinks one of two things may be happening and his first hypothesis of cylous ascites seems to be based on some misinformation. After setting things straight we’ll see where we are about my needing to be hospitalized in Portland or if it can wait until we get to Pittsburgh. Fingers crossed that it can wait as we have way too many things going on for me to hang out in a hospital for a week or more 200 miles from home.

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The low down, pt. 1

Oh friends… This has been a challenging week. Sometimes I feel there isn’t much to write in an update and sometimes there’s just too much and I don’t know where to start. And probably more often I have no clue if I’m giving just a bit TMI for your taste. BUT! I’m not forcing you to read this – and hopefully no one else is either…? – and know I don’t include all the depressing or gross or frustrating things to make you pity me or stop reading or just get annoyed. My purpose here is A) to provide information about what I’m going though in the hope that it will inform, enlighten, make you feel a connection to another human (what’s that?!?) and maybe have a chuckle as well and to B) vent. Look, I’m not afraid to talk to people but right now there aren’t a whole heckuva lot of people to talk to in my life. And that’s ok! Sort of… I mean, it’s just how things are going right now. My social life is having my closest friend over to gossip and watch a show that makes us shout at the screen like dads watching a football game or getting a pizza, calling it “date night” and watching one of the new MST3K episodes with Ian. (If you haven’t seen them and liked the original I highly recommend them. It may have taken an episode for me to feel the vibe but, holy cow, it’s good for a laugh.) So, it’s not the greatest and maybe seems like Netflix is my best friend right now but I know it’s temporary. God… I hope it’s temporary….

So, now that different version of a diary disclaimer/apology is over (see the last entry) I can get down to the nitty-gritty.

And the nitty may be a little grittier than you’d prefer but, again, I really think some of this information could be helpful to women in particular and for any man/woman who really wants to be there for their lady. Yes, I just said “their lady” – let’s just move on and not discuss the middle-aged connotation of someone saying “my lady” or “my man”, ok?

…cue the flashback wavy lines and let’s get a little background…

As you may remember from my posts last February I had an ovarian cyst that ruptured and tried to do me in. I’ve had a few complications with being female and on blood thinners at the same time. (Yes, this is the style of the nitty-gritty I was talking about. Don’t worry, I won’t be too detailed but I will be discussing female health. You can bow out now and be a weenie or look at things from a scientific angle as I am doing. I think you can handle it…)

Eleven years ago I had been on birth-control pills and for some reason my GYN NP decided to switch me to a horrible (for me) device called a NuvaRing. You’re welcome to look that up if you like but all you really need to know is that it must be designed for a very specific kind of woman because I HAAATED it. If I had wanted to make my cycles more annoying I would have…. well, I would have opted voluntarily for this silly thing. As it was the “device” was not working to stop my cycle. The NP said that my body was just getting used to it and to be patient.

I’m a pretty darn patient person (with most things) but it really didn’t feel right that my body wasn’t following the normal protocol of beginning, middle and end of cycle. In fact there was no fluctuation with amount of flow or anything that women come to expect as communication from their bodies. It seemed like, forgive me Sir Squeamish, too much bright red blood, like a bad wound. (There, that’s the worst part over.) Not only that but while a normal cycle is about a week I had been bleeding for weekS! I had been on blood thinners for 4 years but had never experienced something like this and didn’t know if I should be alarmed or just “be patient” as I was told. My default was alarm.

It was a tricky time because Ian and I were a new-ish couple and had just rented a place together AND had had a pretty major falling out. I wasn’t really able to chat about what was happening with him and my doctor seemed to think everything was going as planned. The fact that I DID have to have a blood transfusion in the midst of all this really should have been a wake-up call to all involved. But the bleeding continued….

At five weeks of bleeding, yes, 5, I got up to go to the bathroom one morning, you know, like you do, and when I stood up to wash my hands the room went dark. When I came to someone was crying… oh wait! that was me. I had passed out and smacked my temple against the edge of the toilet on the way down. If the seat had been up and I had hit porcelain I would have been in serious trouble. (Always put the SEAT DOWN! The more you know…..) Ian came running and the room went dark again as I laid on the floor. The second time I woke up Ian had his fingers in my mouth. I was confused and as he rushed to the phone all I could think to say was “Was I biting you?” Apparently I went into shock which Ian took for a seizure and tried to keep me from biting my tongue clean through. Instead he sacrificed his fingers… and the nails turned black. (Perhaps this was the beginning of us getting back together. Hooray for black nails!) 911 was called as I struggled to figure out what the hell was going on.

After reaching the hospital it was determined that I was only at about 80% of the blood volume I should have had. And this is, mind you, was AFTER having a blood transfusion just a week or two prior…. yeah, think about that for a second. The GYN doctor that oversaw the clinic I went to and I had already arranged for a D&C to be done the next day. (I guess I couldn’t wait…?) The minor surgical procedure to test uterine tissue was done early and I stayed the night in the hospital curled up with a blood bag.

I don’t remember the diagnosis or even that they were able to find anything to blame the bleeding on but I was placed on a course of progesterone – no more stupid NuvaRing! – and sent home to recover. And recover I did! It was then that I became determined to drop my NP like a bad habit and get a better opinion from the “amazing!” doctor who stopped the horror show I’d been living for over a month.

Doctor’s recommendation was to have a Mirena IUD placed. It’s a very small, plastic T-shaped thing – about the length of a quarter – that does what other IUDs do as well as releasing a tiny bit of local hormone rather than the systemic hormone “wash” your insides get bathed in from taking the pill. Benefits included only having to get one every 5 years (woot!), having it be even more effective than surgery if placed correctly, not having to remember to take something or replace something to stop your period (yeah, I’m giving you the eye, NuvaRing), no or low risk of blood clotting (and doesn’t that make sense if you’re on blood thinners??) AND, this is the best part besides not accidentally getting pregnant, little to NO menstrual cycles! And yes, that is what has happened. No cycles for me!

Now, I’m just going to have stop here to clarify what that means to not have cycles and get an “amen” from pretty much every woman out there. Periods are crappy! Let’s not even look at PMS mood swings and how some women abuse the syndrome and how loads of men think we exaggerate. Everything about having that monthly “visitor” is lousy. First of all so called feminine hygiene is expensive and you can never remember to be perfectly prepared every time because you have a life. Then there’s the arranging vacations and romantic encounters around ghost week – will you be able to go swimming even if you have the right protection because holy cow that swimsuit kinda looks awful on you right now! And then there are the physical symptoms, again, excluding the emotional swings that some women are able to avoid and make others want to start tearing off peoples’ heads. (But I wonder if a man would be in a great mood all the time when a quarter of his life between a prepubescent age and “in the prime of life” is spent feeling like he had the flu.) There’s the cramping, yes, and blowing up to an unrecognizable size and shape as well as feeling soreness in areas that just ought not to be sore. It’s a lot to ask of someone who isn’t planning on having her own children, sees bleeding as a life-threatening issue and just really doesn’t need one. more. thing. on her plate.

After using a Mirena for five years – without a period! – I jumped at the chance for having another placed for five more years. Fortunately, by the time I was due for a new one I had forgotten just how painful the first had been to place. Considering it was the only drawback though I was A-ok with that temporary “inconvenience”.

During the fifth year of the second Mirena is when I had the cyst rupture. It was sudden and it was excruciating. Not only that but it was incredibly dangerous. Luckily, I was flown to OHSU where they had the knowledge to avoid surgery and blood transfusion if at all possible. I was put on blood thickeners (aka vitamin K mostly) and we all held our collective breath. I was lucky to only (only?) have internal bleeding and not need further intervention other than reintroducing anti-coagulants and watching for signs of internal bleeding again. With an inflamed belly full of blood and fluid it took a good year before I didn’t look as much like a stick-man who swallowed a watermelon.

And at that year point it was time for me to get Mirena #3. But, what’s this, doctor says my insurance won’t cover Mirena IUDs anymore? Sure, that makes sense. My insurance will cover other IUDs as well as birth control pills AND for a woman to have a baby but will not cover the $700 device that is likely saving them money on birth control pills and possible hospitalizations over 5 years. And while not FDA approved, because Mirena would have to have the FDA do research, many facilities have noted that Mirena is actually reliable up to SEVEN years! (Gosh, why wouldn’t Mirena want that to be FDA approved? Maybe because that means less money for them? Naw, a pharmaceutical company would never act like that…) My doctor offered to waive the office fee if I could pay for the device but knowing that I likely didn’t have $700 burning a hole in my pocket also suggested going to Planned Parenthood and seeing what their helpful clinic could provide for coverage. Either way, meh, I hate dealing with insurance companies to try to figure out what my health and life is worth to them.

But OHSU came to the rescue in the form of transplant doctor Jill Gelow and coordinator Suzanne Hanson once again. Suzanne got a letter from Gelow marking the medical importance for someone like me to avoid any kind of bleeding at all costs. Suzanne also looked into their clinic at the hospital to see if they would be able to get coverage. After talking with my Yakima doctor’s office and insurance Suzanne thought my best bet would be OHSU and she was right. For whatever reason OHSU’s women’s health clinic had no problem getting me in not only to have the IUD replaced but to see an amazing doctor. It’s all who you know, I guess.

I’ll stop here and let you recover from the bucket of information I just dumped on your head as well as the ick factor. More about my appointments this last week (and less “ick”) when we continue!

The BIG news!

I had been planning on posting this this last weekend but there’s been a lot going on…

So the big news…. drumroll…. is that we are moving. Yes, for those of you who have seen or visited our house and know how perfect it is for us might be surprised but there are many reasons why we must move. And the move isn’t a small one. We aren’t staying within Yakima or Washington State or even the west coast, we’re moving to Pittsburgh. By now you likely know that Ian is from Pittsburgh and that we’ve been there a number of times in our 13 years together (actually we’ve known each other for 14 but have been and “item” since December 2003). It will be a gigantic change, especially for li’l ol’ west coast me, but it’s one we’re both looking forward to.

We’ve been thinking about moving east for a while now. The plan a few years ago was that Ian would go back to school and study radiology while I continued to work. Once graduating from the 2 year program we would look for a job for him in Pittsburgh where there are numerous hospitals and opportunities. And then we were hit by the 16-wheeler called “transplant” and everything came to a screeching halt. When Ian’s health began to suffer starting last November it started to look like we might never get to the top of the hole we were being buried in. It was a challenge, both for being a caretaker and for some other reason that I may never know of, for me to get hours in at work and Ian simply couldn’t work. The struggle has been more difficult to bear than I may have let on – you know, pride and all that BS.

Now we’re at a point where we just can’t stay in Yakima even if we wanted to. There aren’t enough jobs to chose from for Ian who is not interested in working labor, retail or food service at this stage in his life. He has tried many things – despite what two of my relatives believe (yes, gotta love that blood is thicker than water business) – like working for an archeologist for many years, some of which while also working at Starbucks, and losing his job because his boss moved, applying and being interviewed for a CNA program but getting turned down for being overqualified, offering his triple-certified master bike mechanic talents to tuning up people’s bikes, restringing tennis rackets, being part owner in a wonderful ice rink (which went south because the property owners did not understand what a money maker such a thing could be during the holidays), he worked for a company that assembled things like bicycles for stores like Walmart but had to quit because he was appalled at the lack of quality and safety that was being put into their products (seriously, you’re taking your life in your hands with a pre-assembled bike at Walmart) and then working at Essencia bakery in downtown Yakima. And before becoming ill he also tried his hand at working at PNWU where I am employed. Despite all his efforts and my jobs at Inklings Bookshop, PNWU and the Capitol Theatre we just couldn’t make ends meet.

Our sweet Yakima house with more history than you can shake a stick at! It’ll take someone special to appreciate what this precious house and property has to offer.

Pittsburgh will offer us many things: family, opportunity, inspiration, healthcare and relief. We will be staying with Ian’s mom for a while as we look for another perfect house, get jobs and manage to catch our breath. The sale of our absolutely charming Yakima house will provide us with a down payment for our next home and a little money to invest in getting back on our feet. There are so many job opportunities in PGH (let’s just get familiar with it, shall we) because after the steel and mining industries faded away as the main sources of income for the area the arts and education stepped in to take their place. There is a huge amount of universities, theatres, museums, libraries, galleries and hospitals that it’s a bit mind-boggling. (Thanks Andrew Carnegie!) When we get there I’ll be filling you in with what we find and what advantages PGH offers for us. Just the fact that I won’t have to travel 4 hours or be flown to where my doctors are every time there’s an emergency will be a huge addition to our lives. UPMC is an incredible hospital that will be the closest thing to “one-stop-shopping” that my little challenge of a body could ask for! I’m already getting scheduled for appointments because my incredible transplant doctor at OHSU, Dr. Jill Gelow, and her coordinator-extraordinaire, Suzanne Hanson, are working to have everything set up for me health-wise when we get there.

Except for a short stint in college and a 6-month span right after I have lived in Yakima my whole life. I never anticipated doing that.  I know that Yakima holds a lot of wonderful things for a lot of people and that’s great, but for me it’s been difficult to be as ill as I’ve been and be in a place that didn’t offer very much inspiration or opportunity for my particular personality.

A great view from PNC Park that I found on the internet. Pittsburgh is in the background and looks like the backdrop of a late show to me! We sat near this same spot at a game a couple of years ago and it was much more impressive in person.

And while PGH is Ian’s home town it is very different than it was when he left 14 years ago. We’ve been amazed and excited in our trips “back home”. The trees and humidity will be good for my soul. The vast amounts of family that have been waiting for us will feel like walking into a big hug. The fresh start is what we have been holding onto as our dangling carrot among times that were so difficult we didn’t think we’d see our way out. The transition will be very hard but I think we’ll both be filled with relief with the support and inspiration that will come from the move.

We’d like to have the house on the market around the beginning of July. Our real estate agent, a lovely man who sold us the house in the first place, believes that people will be lined up for it. If our neighbor’s house sold in two days I don’t think ours will be far off from that.

We will be having packing days if people would like to come help and we’ll have a yard sale – first dibs to those that offer their assistance! We’ll also have a party or open-house for anyone that would like to come say farewell. If you’ve been a bit of a stranger we’d love to hear from you, if you’ve had our back for a long time know that we both love and appreciate you and what you’ve done for us. We wouldn’t be able to take on another challenge without that support.

More soon! xo – Mimi

Here’s a lovely collection of some of the most beautiful places in Pittsburgh. (Check out any pics online of the Cathedral of Learning and the Nationality Rooms! It’s like Hogwarts meets the UN!) I know that the name “Pittsburgh” doesn’t make most people think of beautiful things – you know, the whole “pit” aspect of the name – but I really think it’s a misnomer to keep most people out much like the Vikings use of Greenland vs. Iceland. It really isn’t the pits!

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Winding down and gearing up

Hello, friends!

When I was a little girl and tried to keep a diary I would often begin my entries with an apology to said diary about my long absence. “Dear, Diary, I’m so sorry it’s been so long since my last entry. SO MUCH has happened! I’ll have to catch you up…” Apparently, things haven’t changed much because I’m feeling the same urge to apologize to you. The difference being, of course, that no one was actually reading my diary back then, or, if they were, they were probably pretty darn annoyed with my apologizing!

Ok, now that that business is out of the way let’s get to the update…

A couple of weeks ago Ian and I finally got to a doctor in Seattle for his abdominal symptoms. He had been in such bad shape that he almost went through with the sphincterotomy ERCP that his GI doc in TriCities suggested. The procedure to cut the sphincter of oddi, the opening where enzymes are added to digestion from the gallbladder and pancreas, was a last ditch effort by that GI doc who just couldn’t figure out what to do with Ian. HOORAY FOR US that we waited! (Especially for Ian.) Dr. Irani, a GI doc at Seattle’s Virginia Mason hospital specializing in SOD (sphincter of oddi dysfunction), went through what he thought might be possibilities for Ian’s area of complaint with us. He brusquely went through about four or five different options and ruled out most of them based on one factor or another. What it came down to was “functional dyspepsia” or “gastroparesis“, but he was leaning heavily on the first – neither of which would have been helped with the ERCP procedure. He did say, however, that if Ian had needed that procedure that it wasn’t nearly as risk-riddled, controversial or last-ditch as Ian had been hearing.

Dr. Irani ordered two tests along with a bit of blood work to make sure he was on the right track: a gastric emptying study to check for gastroparesis (a sort of paralyzed gut) and an endoscopic ultrasound (“EUS”, a type of endoscopy where a camera tube goes down the throat to look at the stomach, small intestine, pancreas, bile ducts and liver). The emptying study was done pretty early in Yakima – Ian ate a bit of food laced with radiation and was scanned every hour for four hours to see where the food was – and the EUS was done in Seattle last Thursday. While we don’t have the results of the emptying study (thanks Yakima medical system!) the doctor said that Ian’s pancreas and everything else he looked at in the EUS looked great, very healthy. YAAAAY!!!! That’s incredibly good news! And so we’ll move on from there with that information under our belts. (PS Dr. Irani was much more “warm and fuzzy” with the test. Actually, the whole, huge team of folks that helped Ian was made of some incredibly nice people.)

Now, while Ian’s belly symptoms had very, very slowly been letting up even before hearing this good news he’d managed to develop a new and unnerving mystery issue. For many weeks now he’s been having tingling and weakness in his forearms, hands and lower legs, but excluding his feet. He’s incredibly frustrated and upset by it. Our GP did a brief neuro exam and seemed to feel that the results ruled out anything serious but wants Ian to see a neurologist. He did blood work and included tests for hepatitis and, get this, syphilis….. uh, excuse me? First of all, have you met us?! We’re really not the type to find ourselves in the path of hepatitis and syphilis. Also though, syphilis presents itself as an all-over body rash before ever turning into anything neurological. (I only know because of the magic of Google and many a BBC period mini-series.) At any rate those results were negative (Duh.) so the search continues. I mean, where would we be without a mystery to solve? I told Ian that I wish Agatha Christie was around to get Poirot or someone to figure this out.

As for me I saw a neurologist at OHSU who wanted to put me on Topamax to see if it could help my symptoms. She was thinking that the precursor I feel before passing out or even experiencing pre-syncope (pre-fainting) was similar to seizure. The fact that I have always been clear headed after passing out was not at all similar to seizure, however. (Just to be clear I have not passed out for a really long time but I have had a bit of pre-syncope.) Topamax also has the benefit of being a migraine prevention medication and since I am having migraines 2-4 times a week a break would be nice… it gets really old.

I started the Topamax and within the week of taking it I had zero migraines (YAY!) but managed to have trouble breathing AND constant pre-syncope (uh…… meh). I asked to stop. I was on a very small dose, 25mg, but the side effects were just too much for me. I may try again or ask if symptoms minimize at higher doses or with time. Some medications work like that. If, however, they don’t minimize it’s back to the drawing board. Based on past experience once my stress lets up my head should see nice long periods of relief. It’s a sort of “chicken & egg” situation.

So, that’s the medical update for now. I will have another update this weekend with a HUGE bit of news so stay tuned!

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Updates all ’round

Since last we “spoke” a lot has gone down and a lot hasn’t at the same time. In that 4 week span Ian has been to the doctor 4 times, had a 5-hour ER visit, 1 visit with a nutritionist, another ultrasound (this time to rule out kidney infection), a lot more calories and 2 new medications. We thought about trying low THC marijuana (doesn’t make you feel high) for pain but apparently the other chemical in pot, CBD (which controls pain), is counter-indicated for pancreatic issues. (Of course!) One of the new medications he’s trying is an enzyme called Creon and it seems to be doing the most good out of everything he’s tried. The only problem is that it’s recommended that a patient take anywhere from 3-15(!) capsules per meal and his insurance will only cover 1 capsule per meal… so, that makes sense? He’s now out and instead of spending hundreds of dollars for Creon out-of-pocket he’s trying something that’s not quite as good at about $30 for 100.

The plan with all this “getting things stabilized” business is to avoid doing an ERCP with sphicterotomy and to have him relatively comfortable and not losing any more weight until he can see a GI specialist in Seattle at Virginia Mason. His appointment is this coming Friday and I think we’re both really hoping that there’s something more Ian can be doing without doing resorting to something invasive. We’re also trying to keep from expecting miracles. I think right now we’d take just about anything that helps.

Tomorrow Ian will be seeing a massage therapist in order to attempt to get some function back in his hands. While malabsorption can cause nerve issues I’m leaning on the hunch that Ian’s so incredibly tense from 6 months of waiting for answers that the muscles in his shoulders or back are pinching nerves. Hopefully a good therapeutic digging can release some of that.

I realize that this blog was started so that I could report my health updates and lately it’s been Ian updates but I guess we kinda come as a package. Still! I’ll tell you a bit about what’s been going on for me…

To recap just a bit, since December of 2015 my pre-syncope and syncope (pronounced SINK-oh-pee) symptoms have been on the decline. In October of 2015 they had looked at my valves and found my mitral valve to have a leaflet that wasn’t opening all the way. I was sent to talk to the OHSU transplant team to begin the process of heart transplant. They suggested trying to up the dose of blood thinners that I take to see if a blood clot might be what was causing the sticky leaflet, although they were pretty sure it wasn’t the case. December rolled around and my symptoms were letting up a bit but the doctors at OHSU still wanted to pursue transplant.

By the time I had an ovarian cyst rupture in February of 2016 another look at my heart during that hospitalization revealed that the mitral leaflets were acting as they should. I was still having occasional symptoms though… so what does that mean?

I went to Stanford University in May of 2016. Standford was the only west coast location doing a study which involved a Gallium-68 scan, a scan that could see where my tumors are still located. (They’re still nice and cozy where they “belong” – in my liver.) I was feeling better and the cardiologist there did not recommend heart transplant. And things have been pretty quiet for me since then.

However, that being said, I do still have pre-syncope on occasion and lately I’ve been having a sort of warning that pre-syncope is on its way. (Pre-PRE-syncope?) I saw a neurologist at OHSU on May 4th and she wanted to look into seizures as being a possibility. The areas of my body where I feel pressure in that pre-pre-syncope are at the base of my sternum and in my throat. Dr. Bernard (the neuro doc) said the warning feeling and the location are similar to seizure. The difference being that for the times when I fully pass out I wake up knowing what happened, seizure patients are confused upon waking. I had a head CT and lots of bloodwork and will be having an EEG (brain function test). I had an EEG early in the diagnostic process and it was negative. I’m not expecting anything different now.

The fact that I’ve been getting migraines 3-4 (sometimes more) times a week also made her think I would be a good candidate for a medication that prevents migraines as well as seizures. I’m still waiting to hear from my GP about how safe it is for patients on blood thinners. The increase in migraines could, of course, be influenced by the amount of stress both Ian and I are under.

It’s been difficult to work since Ian has had periods of time where he needed someone to help him with basic things and was very anxious about being left alone. I’ve done some wardrobe work at the Capitol Theatre and continue to be the “magazine lady” at Inklings Bookshop once a week, but my work at PNWU has suffered. Whether it’s because things are changing at the U or because of my absences or some sort of political reason I’m barely working. It’s made things incredibly hard and I’m trying to think of ways to make money from home. I knit, sew, do beadwork and all other kinds of organizational and crafty things. Hopefully someone or many someones will realize that they need my help and talents.

I’d love to write an update where I said, “Everything’s GREAT! We’re just so happy!” but if that’s going to happen it’s a little way down the road. Until then I’ll share with you my latest accomplishment: my first pair of knitted socks! I’ve been wanting to make socks for some time. They were tricky and I had to tweak the pattern a bit but I got them to work! Hooray for socks!

Thanks for all your love and support, everyone. We have needed every drop. We will send along whatever love we grow from those seeds to the many folks we know who are also in need of support right now. It’s all about paying it forward. – Mimi

 

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Desperation

As you may remember Ian had his gallbladder out on the 23rd of March. We were so hoping that after a bit of healing time he would be feeling better than new. It was touch and go at first but gradually turned into a pattern of “two steps forward, one step back”, it did feel like a bit of improvement.

Last weekend things looked like they were in a downward slope again. I was hoping that after the discomfort there would be another period of feeling a bit stronger and being able to eat more. Unfortunately when we went for Ian’s surgical follow-up on Tuesday things had not improved and seemed to be getting worse. Dr. Young had Ian get a blood test and two hours later told us that Ian’s amylase was elevated, a sign of pancreatitis. We waited at the surgeon’s office while a bed was found at the hospital across the street.

Now it’s two days later and Ian FINALLY saw the most inept GI doc I’ve ever met. Here are some of the ridiculous tidbits of information he had to impart:

  • Ian did not/does not have pancreatitis (never mind that he was treated for pancreatitis by being put on IV fluids, taken off of solid food and only allowed a “clear liquid” diet for two days.)
  • The color, texture and smell of one’s stool (sorry if this is TMI for you delicate souls) has no significance to a person’s health unless there is blood in the stool. (So then why do hospitals bother so much to collect and study stool? Why are there lab tests for stool if it doesn’t offer information?)
  • He wants to put Ian on another form of antidepressant that addresses chronic pain (because finding the ACTUAL CAUSE of pain would be too… direct?!?)
  • He wants to check Ian for celiac and says that people don’t need dairy (Ian has already tried going off of gluten and dairy. Pretty sure celiac is out although he is having trouble with dairy being hard on his stomach, but he was consuming dairy 7 months ago without trouble. When I said, “He may not need dairy but he absolutely needs the calories it can provide him, ” he really didn’t have anything to say except, “Oh… well…”)
  • Even though he’s a GI doc the sound of a siren perks him up like some mad dog and he is “forced” to flee.
  • Also like a dog he was distracted in mid-conversation to address the Bill Murray book Ian had on his table but then had to hurry out to CATCH THAT AMBULANCE!
  • I asked if he was going to come back after the blood test and he said “why?” I said, “Because he still has questions!” “Well I’m here now. What is it?” as he was halfway to the door.

So I ask you, friends, do you know of a decent GI doc or endocrinologist in Washington state that Ian could see? We are getting nowhere and in the meanwhile Ian is losing weight, can’t/doesn’t want to eat because food equals pain and he can’t get answers from FRIGGIN’ ANYONE!!!!!! We are tired and losing hope. When I look in Ian’s face all I see now is pain, hopelessness and a feeling of being abandoned by those that could help. We just want answers so that we can treat whatever is going on or make whatever lifestyle change needs to be made. Why is this so hard? Why don’t any doctors see this mystery as a puzzle to solve, as a challenge and a way to use all they’ve learned. We keep running into doctors that seem baffled, bored and even defensive about Ian’s condition. Just find the answer, for crying out loud, or find someone that can!!!

Surgery day (aka sayonara gallbladder!)

Ian’s headed into surgery today (finally!) and I will be posting updates on our team page on Facebook. Follow along there: facebook.com/teammimian

Thawing out

In our neck of the woods winter is finally fading and with it brings a bit of hope.

Since the end of November Ian and I spent almost all of our time holed up in our little house. As wonderful as that may seem, involuntary house arrest is never idyllic. (But voluntary house arrest is??) It began with some familiar issues.

Two years ago Ian went through a bout of incredible stomach pain. While he’s suffered from stomach acid issues for years this seemed different. He was sent to the first GI doc available, who was unfortunately an hour and a half away, and began looking into what could be causing his symptoms. Testing for stomach issues showed nothing all that unusual and very, verrrry gradually things eased up in the mysterious way that medical problems can sometimes do… in the same way you can be relieved and frustrated by the mystery at the same time.

So, at the end of November the strange abdominal pain reared its head again and again the GI doc had nothing to give Ian by way of an explanation. Finally after quite some time and excruciating and worsening pain the GI doc decided to do testing. Scopes, an ultrasound and multiple ER visits later we still had no answers.

Meanwhile, I had managed to get incredibly sick with one of those lovely things that gets brought to the office and was out for almost all of December. During the holiday break from the university where I work I managed to get a job at the Capitol Theatre (local downtown theater) doing wardrobe for the traveling show of “Pippin” that was beginning it’s run in Yakima. It helped make up for the work I missed but was a struggle to be away from home as Ian’s symptoms worsened.

In the 13 years that we’ve known each other I’ve never seen Ian in so much pain. It’s such a helpless feeling to try to comfort someone when the most comforting thing would be information. Frustratingly his doctors threw up their hands until it seemed as if they had given up all together. He had lab work done at the end of January and we just received the results last week. His chromogranin-A (CgA) was elevated which was a huge concern. High levels of CgA can indicate a neuro-endocrine tumor – like the kind that I have in my liver – but you can get a false positive from taking Proton Pump Inhibitor (PPI) medications such as Prilosec, which Ian does. These test results were sent to him by our GP without so much as a phone call of warning! When Ian looked up what a high CgA means and called the doctor in alarm the GP said, “I don’t know what that high number means. We should check with the GI doc.” GAH!!!! Now the trouble with checking with the GI doc is that he does not return phone calls – not to us, not to the GP, no one and it’s maddening. STILL! The GP should never have sent test results without some sort of warning and information on what it meant. Even if he just called and said, “You’ll be getting those lab results we were waiting for in the mail. Your CgA is high and I’m not sure what that means, it could be your medication, but I’ll put a call in to the GI doc to check.” When Ian had phoned him he didn’t even mention that medication could be a factor. Perhaps he didn’t know. (We found it in a Journal of the American Medicine Association (JAMA) article online.)

We put in a phone call to the GI doc Monday, Tuesday and Wednesday of last week and heard absolutely nothing back. Now, this is the same GI doc that had arranged for Ian to see a surgeon without ever discussing it with Ian. One day, out of the blue, Ian got a phone call from surgical consult registration wanting to get his insurance information and set up an appointment. This was the first time Ian had heard anything about surgery or that the GI doc seemed pretty sure it was a gallbladder issue! When he brought it up to the doctor the concept made sense but it REALLY seemed like something that the doctor should have mentioned BEFORE arranging surgery… right?!? (I feel it also warranted an apology, but what do I know…)

Ian finally saw a surgeon in Yakima last Friday to get his take on whether this is a gallbladder issue or something else. Not only did the surgeon say he was at least 95% sure gallbladder removal would help he said that although not everything was typical with Ian he had been showing symptoms that would lead the surgeon to gallbladder issues every time. “If a patient comes into the ER with pain below the sternum like you are illustrating we would first look for a cardiac issue, as many patients with this problem are older, and the very next thing would be gallbladder.” What the HECK!?! Why did it take sooo damn long to get an answer from Ian’s doctors? And even with the GI doc sending Ian to a surgeon our GP still wasn’t convinced it was something requiring gallbladder surgery or even attention to the gallbladder. WHAT!?! In fact, this GP and another Ian had to see because ours was out were treating Ian like a psych patient, as if most of his symptoms were all in his head.

A few weeks ago our GP had used some medication normally prescribed for anxiety on Ian because the “off-label” use is as a muscle relaxant specifically for abdominal spasms. It has been working to reduce the muscle spasms that have sent a doubled-over Ian to the ER and to eliminate the need for pain medication. I’m perplexed as to why the doctor that prescribed such a medication as a muscle relaxant would then believe Ian’s mind is creating all the symptoms.

What we would have liked to have experienced was a doctor that said, “Boy, this is like the symptoms you had before, isn’t it. Let’s schedule some testing and in the meanwhile reduce your fat intake to almost nothing and let’s see if that relieves some of your symptoms.” Ian’s reaction to eating fat, even good fat, was one of the most tell-tail signs that this is gallbladder related. There is also a history of 2 close relatives having their gallbladders removed around the same age as Ian is now for some of the same issues. The location, the timing, the types of symptoms… in hindsight it’s all too obvious to us and we aren’t doctors. We’ve had some of the worst experiences with doctors in this town. It’s frustrating, disappointing and frightening. What happens to all of those folks that don’t look things up online, that feel too scared to advocate for themselves or who believe anything their doctor tells them to be gospel? How much could’ve been avoided if these doctors were “up to snuff” and stayed current with new tests, procedures and diagnostic measures?

Ian will be having his gallbladder removed on the 23rd. It’s an out-patient procedure and the most common surgery done in Yakima, and I assume most places. While looking forward to eating cheeseburgers and pizza is certainly a reward for the surgery I think Ian will be thrilled just to get back to eating “real food” again and not having to freak out if something has more than 3g of fat per serving. It’s the small things…. or so I hear.

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