Week 1 – Write Something
|January 11, 2019
|Posted by Melinda under Uncategorized
“Write something”, my Bujo says for today, and so here I am, writing.
All the days from Friday through yesterday blend together right now in a way that it does not seem melodramatic to tell you “I am *temporally lost right now”. In the middle of this mashed together time I had too much honey mead (actually, just the right amount if I’m being honest, but I’ll say “too much” since getting drunk prior to dinner seems irresponsible if it isn’t paired with that phrase) and my husband and I sat on the motor home couch in a strange place starting blankly at the floor where the three-year old was testing just how much of our attention we had (little enough to get away with using the dinette as a jungle gym? Answer: probably).
*yes, “temporally”. As in lost in time. Not a misspelling of temporarily. Trust me.
“The amount of support you get from your friends….” he trailed off and then concluded, “it’s been amazing”. Automatically I started to recite the list that I try to keep in my head since this all started.
There’s the friend that slipped money into my purse and when I found it two days later refused to admit it. The wad of “gas money” that was too many bills. The checks sent by people I barely knew. The person that pay pal’ed me because they “felt rich for the day”. The friends and family that sent me gifts of support even though I knew they were in-need themselves. The cards, letters, rides to the airport, turning out horses, travel buddies, and “call me anytime in the middle of the night” offers.
It’s been a never-ending stream of words, gifts, and encouragement that I desperately try to hold on to and REMEMBER, even as the sheer volume makes it impossible for me to hold onto all the threads. Am I forgetting someone? Am I overlooking a kind word, or an offer of help? I have to REMEMBER because I have to pay this forward when this is all done. It’s the only way I can say “thank you” and look people in the eye and take what they are offering me, knowing I can never ever pay them back. I have a need and so I take. That, my Dear Reader, is a humbling position to be in.
As pretty and organized as the above words sound on paper, what I actually got out that night before I dissolved into overwhelmed tears on the motor home couch was about the first two sentences. I had to lamely finish with “yeah, there’s a lot of people…family, friends, and my community….that are there for me right now.” We just sort of stared at each other for a few minutes and I felt like a failure for not being able to list each of you by name on command. There are very few times in my life that I have felt like my existence as merely being just a person actually mattered. (As opposed to deeds or DOING something). This is one of those times.
Here’s a reminder of the basics.
After much debate, research, and money spent getting different opinions, I settled on treating the tumor (right eye optic nerve sheath meningioma for those of you coming to the conversation late) palliatively. Radiation is my only option other than watch and see (due to location of tumor), and I have strongly believed from the beginning that frying my pituitary gland in order to eradicate a slow-growing tumor that has gradually decreased my right eye vision to practically nothing over the last three years (which is how long it took to get a diagnosis) is a poor choice. If I had to choose between my eye/vision and my pituitary gland, I’d choose my pituitary gland. A rad-onco doctor offered to treat the area in the optic canal where the compression of the nerve is occurring due to the presence of the tumor, with the understanding that we would probably/certainly NOT be getting the whole tumor, and it might go on to spread and cause problems in the future. The reward would be preservation of the remaining sight of my right eye and the preservation of my pituitary gland for now.
Right now that right-sided eye vision is so poor that if my good eye (left eye) was to catastrophically fail I would be legally blind….but I have enough functional vision in my “bad” eye that I would be very grateful I had it. So, I’m treating the tumor with proton radiation with the goal of preserving the vision that is left there (by stopping tumor growth at the current compression point), knowing that the tumor will continue to slowly grow in the areas we not treating (which is closer to the optic chiasm for those of you that know the anatomy there, but avoiding the more serious side effects of more widespread radiation in the area – which usually don’t occur for a number of years, but because I’m in my thirties, and not in my sixties or seventies, I feel like I it’s valid to worry about 20-50 years in the future.
There’s a lot of words below. Blow by blow story telling is tedious and boring. *Skip it if you want. But I feel like it’s really important for me to write. To make you understand why in a week I didn’t manage a single facebook update that this was all happening. And why when I looked at texts and messages that came on Wednesday – which was a time interval I’m sure people thought was an “appropriate” amount of time for me to be settled and thus not overwhelmed by a friendly “just checking in” message – it still felt too soon.
*But don’t you DARE message me later on to ask me “what’s going on?”, or “what are you being treated for?” I’ve been open about this diagnosis and the decisions I’ve had to make and if you haven’t read my blog posts or seen the facebook updates, I would suggest at the bare MINIMUM you can do some internet stalking to see what I’ve shared so far. Instead of asking me to recap it ALL in a personal message. There are only 2 options if you don’t know what is going on. 1. You didn’t pay attention the first time I posted it, but now that you are curious, feel free to dig around and see what I’ve shared up to this point. 2. I haven’t talked about it publicly, and therefore, unlikely to share privately unless we’ve already been in contact and it’s an ongoing conversation/you are a close friend (in which case I’m likely to volunteer details, you don’t have to drag them out of me). I don’t “vague book/post” so it’s likely if I’m referring to something I’ve already talked about it extensively. Curiosity is not the same as caring.
The insurance approved the proton treatment last year (2018), but because I wanted to start in January (does it sound like fun to fly every week for 2 months during the months of November/December? Nope. It does not) I needed a new insurance authorization in 2019 in order for the treatment to start in 2019. Insurance reauthorization would be submitted on January 2 (Wednesday). We were hoping to start Jan 7 (the next Monday). That’s a fast turn around when you are talking about insurance. I tell you all this, so you can understand just how fast everything had to happen once we got the phone call it was a go.
On Wednesday January 2nd we got the phone call that my first radiation appointment was Monday at 10:15am. Insurance had approved it with less than a 24 hours turn around. We had 5 days to get our shit together and make this happen.
Also adding to the fun on Wednesday my Subaru went into the shop with some “oh crap” sounds.
Thursday it was determined by multiple people that driving the Subaru to LA was not in its future. I was in favor of rolling the dice and adopting a “fuck it, it either makes it or it doesn’t” attitude, that my husband squashed with first disapproving silence, and then when I became more adamant that this was a “good plan”, raised his voice and told me in no uncertain terms that he was not sending me to LA with a car that might die in the middle of a freeway, which had no shoulder, to then be RUN OVER.
Friday we picked up the traitor car from the mechanic. It was my birthday, I was still working, my car had to be replaced 1 year and 30k miles too soon, my three-year old was attached to me tighter than a limpet, probably because she had overheard my husband and I discussing me being gone and she didn’t understand, I had not packed a single thing for the trip and we were leaving the next day, and I hadn’t seen my horses a single damn time the entire week because of ADULTING. I’ve had better birthdays.
Saturday morning my husband shooed me out of the house and I untangled my ponies’ manes and tried not to feel like the worst/most neglectful endurance rider in the world (why do I even have horses? What’s the point? I’m never going to get to go riding again) before dashing to the house to pack. And buy a car on our way down south. That’s right. On our trip down to SoCal, we stopped by a car dealer and bought a new car.
Let’s pause and chat for a second. I don’t buy new cars. It’s not financially the best thing to do when you drive the way I do. With the number of miles I put on a car, the “best” thing is for me to find something old with low miles, pay cash, drive the crap out of it, and then sell it for cheap with 250K miles on it 4-5 years later.
Here’s the problem. It takes time to buy a car for this scenario because you have to FIND the right car to do that with. There’s always a risk you are buying a “problem” and immediately driving it and living 9 hours away from home without time to make sure it’s reliable is really hard. Renting a car was going to be nearly as much money as what we usually pay for our cars, or a down payment on a new one.
We decided the bottom line was this was one of those times in life you do what’s best for the moment, knowing the long-term consequences were going to “be okay” even if they weren’t ideal. Which is why I now own a 2018 Honda CR-V. o_O. A new car. Yet one more thing to add to the surreal alternative reality I am living right now.
And then we drove until 1am Saturday night/Sunday evening to our half way point.
And then we got up at 7am on Sunday and kept driving.
The best thing about having a new car is that my phone’s GPS – which hasn’t worked in over 18 months – WORKS PERFECT when it’s plugged into the car. Same for the voice to text feature. Same for the speaker. I know this phone is dying the slow death but having actual GPS navigation and being able to use it hands free in the car right now is one of the best things that’s happened to me in the last couple of weeks. It has my permission to burst into flames and die the good death in April. Just give me another 3 months please.
We were late for our arrival window at the RV park where I’m staying and I could tell the lady was annoyed and I tried apologizing. But I was tired. Tired of driving. Tired of apologizing for the little things that weren’t going to plan compared to the big things that kept happening. I just wanted to scream “I AM FUCKING DOING THE BEST I CAN.” Nine hour drive and you wanted a one hour arrival window for Sunday, on Friday. They wanted an insurance card for the new car. That we had purchased 24 hours ago. I showed them the insurance card that we also showed the dealer to be able to drive the car off the lot, but it wasn’t good enough. I hadn’t even notified our insurance company yet because I bought it on a Saturday night, it was Sunday. I’ll have to remember to print out a temporary card at home from the insurance agent when I get home this weekend and bring it with me. Another thing to remember. Another thing to write down and worry about and probably forget to do, and then more apologies.
The first thing we noticed after parking and setting up Sunday afternoon was that the severe winds we drove through Saturday (“extreme weather advisory, travel not advised”…..FML) were so powerful that it actually started to de-laminate part of the front siding of the motorhome. We also needed another 10 feet of sewer hose. And have I mentioned that the three year old child is also bouncing around doing her child things throughout this whole narrative?
There were also a million other adulting things that had to be discussed/considered/decided on and as I looked at the motorhome siding I told my husband “I just can’t adult any more today, I just can’t”. So we went inside and I drank mead and he drank beer, and I looked at my new reality – a new car sitting outside, a damaged motor home sitting in a mobile park, all in a town I didn’t know, where I would not be making an income for two months….and instead I cried over the seemingly unending support I had received in the last month.
Monday my little family went to the hospital still looking shell shocked. Struggling at the valet to drop the car off (do you get this little key fob or do we take it? Sorry we’ve only had the car two days and we are still weirded out by no key, do YOU know how to work this car when you take it away to park?), coffee clutched in hand, still a massive sleep debt and a list of adulting things that have to be done. Into the doctor’s exam room for the mandatory weekly check in, which is being done before my first radiation treatment (which is actually a radiation-free treatment. It’s a dry run to make sure everything works and to get the positioning right). And then the doctor drops a bomb shell.
“I know we talked about pituitary sparing, but when I was doing the planning, I just can’t get the whole tumor without getting your pituitary in the view….and my training…I just am trained to get the whole tumor…”. I looked at her. All this work and planning. All the sacrifices so far and I’m back to where I started. We had talked about this. She was the one that had suggested not getting the entire tumor in the first place. I re-emphasize my concern about hypopituitary syndrome and the quality of life living with it. That for me, hypo-pit means a life of doctors and drugs and ER visits and managing my health without the balance of being able to do the things I love. No ultra running. Endurance riding would be difficult. I enjoy pain and pushing my limits in a way that is not compatible with hypo-pit. She tries to reassure me. “Not everyone loses pituitary function after radiation”. I ask about statistics…again. “20% at a year lose function. At five years, 50%.” I know that it’s even higher – like 80% – if you go further into the future. I’m 34, not 74. I’ll likely live long enough. I know that I should be optimistic that I won’t be part of the statistic. “Of course I’ll be in the unaffected group!”, but I don’t have faith in statistics any more. Try having a rare cancer in a rare location that took 3 years to diagnose. I’m a statistical outlier right now. I have to reconsider my decision to not treat the whole tumor all over again – a decision I thought was already made. Do I treat it all now? Do I do nothing? Do I just treat the compression spot? Am I doing the right thing? Is this all for nothing? Only I will bear the health consequences for this decision. The doctor can make recommendations, but in the end, I am the one that has to live with the results of those decisions. Consent. Informed consent. Realizing that the right decision may not fall within the “standard of care”. And once again having to fight for those rights. Justify them. The anxiety that has developed in doctor’s offices over the last 3 years of being misdiagnosed, brushed off, marginalized, and not listened to rears its head again. It’s threatening to go to a full on panic attack. I thought I was done with these conversations. I can still talk, my throat hasn’t choked yet and there’s no tears so far. But I feel them there. Once you have made this type of complicated, no-clear-right-answer decision, having to make it a second or third time is not any easier. The plates for the radiation have already been made she explains. She can modify them to do the pituitary sparing as we had discussed initially, but it will take time. She can do a modified protocol for the first week or so with the original plates until the other ones are built. I look at my husband and squeak out the words “help me” and I try to catch my breath. He tells the doctor that we are here because with proton therapy we can do pituitary sparing radiation. We won’t treat at all if she insists on putting the pituitary gland at risk. I manage to confirm that yes, that is indeed what I want. She will document my insistence that the whole tumor will not be treated.
I don’t even remember the rest of Monday. The dry run goes well, but I’m emotionally drained from the doctor’s appointment. Instead of settling in I’m back to a zombified state and I’m merely existing again. I still feel like nothing is real and it’s one more day lost to this alternative reality that lacks days of the week.
Tuesday is my first “real” radiation appointment at 8:15am. The machine is down. At 11am we leave the hospital for lunch and to register for the gym membership that I get for free because I’m a proton patient. “If you don’t get a phone call by 5pm that the machine is up and running, you won’t have a treatment today.” We had planned a fun family day on Tuesday after the treatment – for distraction and to “make the best of it”. Instead we twiddle our thumbs at the motor home waiting for the call that never comes. One more day tacked onto the expected end date of the treatment. It will be 25 treatments total regardless of the calendar days it takes to get there.
Wednesday the machine is up and running and after only a 90 minute delay I can mark off 1 treatment. 24 to go. There’s just enough time to squeeze in a Palm Springs trip to the air museum and to ride the tram up the mountain before dropping my husband and daughter off at the airport.
That brings us to today. It’s Thursday. I finally slept (amazing what not having a kicking blanking hogging pillow stealing child in bed with me will do for my REM sleep….) and my 6am radiation appointment was on time and went smoothly – except for the part that the position they put my arms in compressed my ulnar nerves bilaterally (they are sensitive thanks to the repetitive motion of my surgical job) but I think I’ve got that solved for future visits.
What do I do for the 45-60 min I’m keeping completely still on the table? Rehearse fiddle tunes. Mentally. Yesterday it was Foxhunter’s slip jig, and today I tried to make Kesh jig and Swallowtail jig into a medley.
The tech wants to keep my appointments at 6am every day….which is good from a “do other things” perspective, but TERRIBLE from a “must fill my day with activities” without the benefit of sleeping in.
Today is a good start to what I think will become routine. Before noon I had exited the hospital, caught up on internet stuff with wifi at Panera over a cup of coffee, and checked out the nearest trail head – complete with a 90 minute run. Other days I’ll go to the gym. I know it’s time to leave the cafe when I’ve had enough caffeine when optimism runs through my veins in a rush and it’s time to DO ALL THINGS.
My afternoons will be spent fulfilling the directive to “write something” – blog posts, books, work protocols.
Three nights a week there’s a social something for the proton patients. Restaurant tours, potluck, seminar that comes with free food.
And then in the evenings I’ll make sure the right flights are scheduled (and checked in), parking reservations are completed, and then I’ll read my kindle until my eyes close.
Lather, rinse, repeat.
Today my alternative reality seems a little less alternative. I posted an update on facebook. I’m writing this blog post. I researched airport parking options and picked the one that was cheapest with the best reviews, and didn’t get overwhelmed or panicky.
An important note for this post, and probably many to come. Today on my run I came to the conclusion that this blog is for whatever I want it to be about. Sometimes that will be the life that exists beyond my running, horses, and veterinary medicine. This blog was never supposed to be about my personal life, and in many ways it still isn’t. Not everything can be shared in this forum where I’ve made a promise to never delete something, and always provide a warning and explanation when I substantially edit something for content. But, as this blog approaches it’s ten year (TEN YEARS!!!!!!!!!!!!! A DECADE) anniversary, I’m not going to hold back from posting stuff *I* want to write about because it doesn’t fit my self-defined “theme” of the blog. You’ve been warned :). I hope it’s a good thing and this is still a positive and enjoyable read for all of you.