I Am Dying

I think I do a great job at minimizing things, and unfortunately this really doesn't give everyone the full big picture.  I don't like to blog when I have bad days, is part of it.  I fortunately forget fairly easily those bad days when I do get a good day.  I guess this could be considered a great strength, while at the same time, my greatest weakness.  The minimizing does me no good because I don't think it gives you as accurate of a snapshot of my reality.  You see this fairy tale of my life where everything is sunshine and rainbows, when it's actually the furthest thing from the truth.  So today, a depressing, but necessary look into my daily life.

The first thing I should probably talk about is how I feel physically, since that's the most pronounced problem.  I am in a near-constant state of pain.  All of my doctors and HB tell me that I have a really high pain tolerance.  I guess that's a good thing, but at the same time trying to really describe things to others is hard for me, because the things that would make them cry just make me grimace.  The pain mainly radiates around my kidneys and liver.  I walk around all day feeling like someone has a dull object crammed into both sides of the small of my back.  It's really uncomfortable for me, and I'm on some pretty heavy duty pain killers to try and alleviate that.  I've had to ramp up on fentanyl patches several times just to keep up with the pain.  On top of that, I take between 6 and 8 oxycodone for carry over pain that the fentanyl can't keep up with.  

My liver is another story.  Sometimes I can have a whole day where it doesn't cause me any pain.  I like those days.  On other days it feels like my liver is on fire.  While this doesn't seem like a lot, my liver it taking up most of my abdomen now, so the pain is not localized, it's actually spread out throughout the entire organ.  On these days I usually don't even get out of bed.  Maybe I make it to the couch, but I am seriously crippled by the pain and can't do anything other than try to sleep it off.  

Since the cancer is throughout my GI system, I get other fun effects.  Sometimes it's diarrhea, others it's some constipation, most of the time it's gas.  The gas hurts the worst, and luckily, most of it isn't smelly.  (If you're at my house and you do smell a terrible gas smell, it's our dog, Ru.  HB will back me up on this.)  When I was first diagnosed, I weighed 187 lbs.  That's the lightest I'd been since middle school.  As of last Tuesday I weigh 134 lbs.  When I take off my shirt I look like I've spent years in a concentration camp.  I can't keep any weight on, no matter what I do.

The last pain I have is in my ribs.  Since things are just growing in size, my ribs hurt pretty constantly, as they're constantly being stretched to make more room for my ever growing liver.  Another added bonus is that my liver is also pushing on my diaphragm, making taking a full breath an ever greater challenge.  I feel like I'm slowly being strangled.

Mentally, I wake up every day wondering if it will be my last.  Will today be the day that my kidneys/liver finally shut down?  Will today be the last day my heart beats because it has to work so hard to deliver blood to all of the tumors?  Will I finally suffocate from the liver pushing on the diaphragm?  Is today that I die because of 1000 other complications that happen?  I feel like my life is balanced on a knife edge, and one wrong move and I'm toast. 

I sit at home every day having not heard from lifelong friends in months, and wonder if I'm already dead to them or something.  I know things are complicated and weird now, but it doesn't mean I'm still not the old Ron who likes to laugh and have fun.  I'm still here.  Give me a call, I know that things work both ways, but trust me, it means a lot more if I don't have to put the effort into it, as everything now requires extra effort in most cases.  Come visit me for a day or the weekend.  I may not be able to do all of the things that I used to be able to do, but I can promise a good time.  But not for long, I fear.  Every day is a new set of challenges and struggles; another set of obstacles presents itself.  It is a long hard, uphill journey, which will only end one way.  I will die.  There is no cure, there is no more treatment.  So please don't forget that I'm still here, because I can't guarantee that I will be for much longer.

Sorry for the shittiest post ever, but I really needed to get that off my chest.

New Post for a New Year

Sorry for the long delay in posts.  It’s been nearly six weeks since I last posted.  The last checkup happened and everything seemed pretty much the same as the last visit.  However, no change medically doesn’t mean that things haven’t been different.  Since my last post I have enrolled in Hospice, and things couldn’t be better, really.  I know that the word Hospice makes most people get frightened, at least that seemed to be the case when I told my family.  I enrolled with Hospice of Southwest Michigan, located in Kalamazoo.  In addition to being really kick-ass awesome, it was founded by the Grandfather of two really great friends that I worked with at camp.  This hospice is less about the immediate short-term, and instead allows people to be in the program for up to 18 months before they begin kicking them out.  So no, this doesn’t mean that I’m dying right now, it just means that they are able to give me really great care, and a lot of convenience.

 For instance, HB and I have been fighting with Medicaid about me getting a wheelchair of my own for the last six months.  First, it was a month of turn-around on just the paperwork.  Then the issue was that they thought I was still healthy enough to not need one.  Realistically, I haven’t used a wheelchair much, but, I cannot walk at any great distance.  On a really good day I might be able to do a half-mile.  Granted, it’s not a very fast half-mile, but I can sometimes do it.  Unfortunately, I don’t get a ton of those good days.  I use a wheelchair whenever HB and I are out and about, and it’s going to require a decent amount of walking.  If I go to the grocery store I tend to use a motorized chair at the store, unless I’m just running in for a maximum of 3 things.  That’s my rule.  Otherwise I’d get not even half-way done, and my kidneys would be throbbing, and my legs would be very weak.  But, I wasn’t even asking for a motorized chair, just a regular manual wheelchair, so if HB and I wanted to go to the museum or something, I can actually go and enjoy myself.  Anyway, I did the physical therapy evaluation they were asking for and the occupational therapist said that there’s no reason I shouldn’t have one.  That paperwork was turned in, with another month of turn-over time.  Then they needed a more specific diagnosis from my Oncologist.  That’s as far as we got.  Less than 24 hours after signing up for hospice, I received a knock on the door with a delivery of a wheelchair, cane, shower chair, and an additional pad for sitting on.   (I can’t sit on hard surfaces anymore, I literally have no ass.  Literally.  Ask HB.)  Voila, it was that simple.  Also, I now get my medications faster, and delivered by the Hospice nurse!

Hospice has been a lifesaver.  They arrange my appointments.  I can have a volunteer to come over and do literally anything from driving me to the store, to hanging out to talk, to shoveling snow.  I can have a massage therapist come over with a table and get massages.  ON DEMAND.  This is awesome!  My nurse comes by once a week to check on me, and usually calls every other day or so.  She’s helped get my pain management tuned so that I don’t have to take as many pills.  She’s also the mom of a friend of ours, so we knew her a little bit before.  The familiarity is nice.  Sidney is her name.  She is fantastic, and takes super good care of me.  The biggest relief of all is that I finally feel like someone in the system finally gives a damn about me.  I can’t describe how lonely this fight has been at times.  I know that I have all of the support (and more) you could ask for with all of you, but I’ve never felt like my care providers actually cared.  I felt like a lost cause- someone that they all tried to just pass on because my case is severe and complicated.  I can finally say that my health care providers actually take care of me now.  It’s like cuddling up with your mom when you were little and you weren’t feeling good.  It is so nice to have that feeling.

So yes, I am in hospice, but I’m not dead yet, and I’m not dying either, damn it.  I’m living every day that I can, and those days are much easier now.  Thanks for reading.  I’m planning another best day ever soon.  I can’t wait to share it with you.  I hope you all had wonderful holidays.