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.

A poem to share

I came across a poem today by Edgar Guest, a Michigan transplant, and the only person to ever be the poet laureate for Michigan.  This is his poem, "See It Through"

When you're up against a trouble,
Meet it squarely, face to face,
Lift your chin, and set your shoulders,
Plant your feet and take a brace,
When it's vain to try to dodge it,
Do the best that you can do.
You may fail, but you may conquer--
See it through!


Hope it brings some encouragement to you all.

Great Moments in Mustache History, Pt. 3, and an amazing cause

Welcome to another edition of Great Moments in Mustache History.  This time, it's another classic, and another Michigan native, Burt Reynolds.

This picture comes from the April 1972 issue of "Cosmopolitan" magazine.  

Also, I'm a little late on this, but if you check it out quickly, it might still be running.  There's an amazing group of people who play through what is possibly the most boring part of a video game ever, and they do it for charity.  The group is called "Desert Bus for Hope", and all of the money goes to a great organization called "Child's Play", which donates toys and games to children's hospitals.  It's really goofy, and a lot of fun, you can check them out at http://desertbus.org/ .  This is one of my favorite charities, and you can find out more information about their group and how they got started on their website.

Great Moments in Mustache History, Pt. 2

How could we get through this month without mentioning an absolute classic.  Tom Selleck, who I found out tonight is a Michigan native, and former minority shareholder of the Detroit Tigers.  Who can forget the thick luscious mustaches of Mr. Magnum P.I. himself?  That's why he's in my list of Great Moments in Mustache History.

Best Day Ever, Part 1

I was reading the latest National Geographic magazine the other night and came across an amazing picture.  The article was talking about whale sharks, and the picture was a man who had just jumped into water filled with these enormous sharks.  It turns out that the man was a local police escort who was so excited to see these sharks following the fishing boat that he just dove in.  The man has the biggest grin on his face as he's reaching out to touch this fish that is literally the size of a bus.  My brain decided that the title of this picture should be "Best Day Ever".

I was also recently talking to my therapist, Morry, and we were talking about leaving some sort of record for our loved ones.  Putting these two things together, I've decided to leave you all with some of my "Best Day Evers".  This will definitely be an ongoing series, as I've been fortunate enough to have had quite a few of these sorts of days.

First up is a day that might have appeared to be miserable, but is one that I will never forget.  This day was one of the days that Shepherd, MI was having their annual Maple Syrup Festival.  HB and I had only been dating for a month or two.  The weather was pretty abysmal.  The festival falls on the last weekend of April every year, and it's either sunny and 75, or raining and 40.  This particular year it was the latter.

If you've never been to Shepherd, it's a tiny town, and the festival is really the only thing that goes on during the year.  They take it pretty seriously.  Everyone in town has a garage sale, and at the high school, they have an all-you-can-eat pancake and sausage dinner.  For a guy who likes food, this is great, the sausages are homemade, as is the fresh maple syrup.  HB and I met Mitch and Wayne there to pig out on the delicious lumberjack fare.  The plan was then to walk around and go to the garage sales.  Also, on the other end of town, they bring in a small carnival, mainly with rides and games for kids.

After we had our fill, we decided to head out for the garage sales.  It was about this time that the sky decided it would be a great time to rain.  Hard.  We all walked around, still engorged from our delicious lunch, but most of the garage sales had closed up until the rain passed away.  We decided to make our way over to the carnival on the other side of town.

Shepherd is not large, so the walk isn't too long, but we were mostly impeded by the slowly flooding streets and sidewalks, not to mention the Little Salt Creek, which we had to cross with it's water slowly rising to near over-flowing.  When we did reach the carnival, it was as you would expect a carnival in the rain to be.  Everything was closed down, and there was mud as far as the eye could see.  We walked around and splashed in the mud, and it was fantastic.

By the time we decided to leave HB and I were soaked from head-to-toe.  I was an idiot (big surprise there) and didn't bring a jacket, but HB, being chivalrous, convinced me to take her jean jacket.  We walked back to her car, and then proceeded to have another adventure by taking just dirt roads back to Alma.  We got back to her parents house, dried off, and fell asleep watching a movie.

This was one of my best days ever.

The surgery

I was in Ann Arbor with HB all day yesterday to get the surgery done to move my catheter to a new site.  Well, that didn't happen.  My surgery was scheduled for 1:00 pm, and we needed to arrive by 11:30 am for pre-op. We arrived on time, and then waited until 1:30 for them to finally take me back to get ready for the surgery.  At this point, I hadn't eaten anything since 9:30 the night before, and I wasn't able to drink any liquids since 9:30 that morning.  That will make anyone's day a lot longer than it needs to be, but by golly, I just wanted to get this over and done with.  The surgery was supposed to take place a few weeks earlier, but was postponed because of the GI bleeding that I experienced a week before the original surgery date.  I had been in contact with the doctor at U of M for a few months at this point, so this felt like a tremendous struggle to begin with.

I finally get prepped for surgery, IV in, stripped down to nothing but a gown, and a sweet blue hair net on.  Everything was a go.  They wheel me back and I get moved onto the operating table, and they decide to do a quick CT scan to make sure that there is enough room in the left lower quadrant of my abdomen.  Well, it turns out my liver is there (for reference, the liver in a healthy individual lies just behind your lower ribs on the right side of your body.  Mine has grown to take over most of my abdomen at this point.  There's not enough room.  The doctor takes a look at the current site of the catheter, in my right lower quadrant.  She decides that the safest thing to do, is just leave things as is, and just keep a close eye on the site.  I have her email address, and am supposed to email her pictures of the site if I feel like things are getting worse.  To be honest, things have been stable at the site for a while now, but I'm using a lot of triple-antibiotic ointment.  It isn't causing the skin to necrose any further, but it has seemed to stabilize the site.  She told me that there is no harm in continual use of the antibiotic ointment, and to keep using it as I currently am.

In a way, I'm really glad to have not had the operation.  I was pretty apprehensive about it in the first place, just because of the GI bleeding before.  On the other hand, it's really annoying to have this problem still going on, and it's another thing to add to the stress pile.  It's super nice to be able to just relax this weekend, instead of worrying about recovering.  The recovery wasn't bad last time, but that was 6 months ago, and I have a feeling that recovery this time around wouldn't have been as easy.

So, HB and I are spending the day together, not with her having to take care of me recovering, but just relaxing and spending time together.  Currently, we're in our mud room soaking in this glorious sun and just having some quiet reading time.

Thanks to everyone who sent food to us for this.  I'm sorry that the surgery didn't happen, but your food is delicious, and I'll always accept some good home cooking.  Thanks for all of your support and thoughts and prayers.

Great Moments in Mustache History

Ah, Ron Swanson.  What is not to love about this character from NBC's "Parks and Recreation"?  This is probably the best mustache on TV.  If I could have the mustache of any Ron, it would be this one.  In honor of Movember, I'll be doing a recurring segment on some of my favorite mustaches of all time.  Send me some of your favorite mustaches of all time, and I'll post them here.

In other news, Friday is the day for my catheter surgery.  I'm not going to lie, I'm a bit anxious about this, although it's a simple outpatient procedure.  Hopefully the nerves will go away before Friday.  I'll probably be down and out this weekend, but will hopefully bounce back just fine.  I did when they did this same procedure before. I'll let you know how it's going this weekend or early next week.  Hope everyone had a great Halloween!

Movember Begins!

Here's the picture as promised, I feel like a huge hipster.

Happy Movember!

There's a group of people who started a foundation to raise awareness and money about men's health issues, specifically prostate and testicular cancer.  Here's some info from their website http://us.movember.com/ :

On Movember 1st, guys register at Movember.com with a clean-shaven face. For the rest of the month, these selfless and generous men, known as Mo Bros, groom, trim and wax their way into the annals of fine moustachery. Supported by the women in their lives, Mo Sistas, Movember Mo Bros raise funds by seeking out sponsorship for their Mo-growing efforts.

Mo Bros effectively become walking, talking billboards for the 30 days of November. Through their actions and words they raise awareness by prompting private and public conversation around the often ignored issue of men’s health. 

At the end of the month, Mo Bros and Mo Sistas celebrate their gallantry and valor by either throwing their own Movember party or attending one of the infamous Gala Partés held around the world by Movember, for Movember.  

I won't be attempting to raise money, but I am going to keep my mustache to raise awareness, and I would like your help.  You're supposed to start with a clean-shaven face, but I've already been growing this facial hair for a month, and my facial hair grows slowly, so I'm going to shave everything but my mustache.  I want you guys to join me.  On November 30, send me a picture of your mustache, and I'll post it to the blog, where everyone will get a chance to vote for their favorite.  The top 3 will win a yet unspecified prize from me, along with my thanks for helping to spread the word.  Ladies, feel free to post pictures of your fake mustache as well!  I'll leave the voting up for a week, and I'll announce the winner on December 7.  Good luck, and Happy Movember!

Homecoming

I'm still trying to come to terms with just how serious this could have been.  I mean, I needed someone else's blood to keep me from dying.  That's not something that happens on a typical day.  Thanks to all of you who made comments and said that you currently do, or are now planning on donating blood.  You could very well be saving the life of someone just like me, and it's not even very difficult.  You are my heroes.

My mom, brother, sister, and cousin Josh came down to visit me at the hospital yesterday.  I had a pretty good idea that I would be discharged, so my mom made my favorite, her macaroni and cheese.  They also brought me down a bunch of other goodies to keep my tummy full.  It was great to just sit and talk with them and HB while we were waiting to find out my fate.  I finally got discharged around 4:30 or so, and they drove me home, while HB picked up the dogs from Dustin's house.  Thanks to Dustin and Carrie for helping take care of the dogs for us while I was out of commission.

We came back and warmed up the mac and cheese and hung out.  I can't describe how great it was to be back at home with my family.  I wish my dad could have made it down as well, but it's hard for him to get around as well.  We ate mac and cheese and hung out, and talked for a few hours.  My soul feels restored.  HB and I spent the rest of the night relaxing after an exhausting weekend.  It was perfect.

After the dogs settled down after the excitement of realizing that guests were at our house, they mobbed me.  I almost cried.  It was so nice to sleep in my own bed, and take a shower in our shower.  It was also nice not getting jabbed in the arm every few hours in the middle of the night.  This morning I woke up refreshed and renewed, but still a little weak.  It's crazy how much losing some blood will take it out of you.  For now, I enjoy just slipping back into our weekend routine.  Sundays are always a bipolar mixture of relaxing and chores, and it's just what I needed.  Thanks for your thoughts and prayers and hugs and messages and phone calls.  I'll promise to try not to have this happen again.

The scoop, as I know it

I went in around noon to get the GI scope done.  They think what is causing all of this is a thing called ''portal hypertension".  Basically, my liver is not in good shape, so it can cause a back-flow of blood to the blood vessels and veins in the esophagus and stomach.  They think that the stress induced the bleeding.  There's a surgical procedure that can fix this, but I'm not healthy enough right now to have that done.  They're going to give me some beta blockers to lower my blood pressure a bit, and see if that helps.

The bleeding appears to have stopped, although we won't really know for sure until later tonight when they check my hemoglobin levels.  They gave me one unit of blood, which brought my levels up enough that they shouldn't have to give me another unit, unless the bleeding starts again.

But, I do feel remarkably better, although the GI scope left me with a bit of a sore throat.  They let me eat a liquid diet, so I went crazy and ordered Beef broth, orange sherbet, lemon sherbet, chocolate pudding (because snack packs literally fix everything), and some cream of wheat.  I usually hate cream of wheat, but I was so starving, and it was the closest thing to solid food that I've seen since yesterday at noon, that I gobbled it down.  Between the transfusion, the food, and great company (Thanks, Kara!), I feel 100% better. It looks like unless the bleeding picks back up, I'll be out early tomorrow sometime.  My oncologist from the West Michigan Cancer Center was going to stop over this evening, but has decided that all of this is working, and he doesn't need to change anything the docs are doing over here.  I'm really excited to go home and sleep in my own bed, and cuddle with my 3 girls.  I can't wait.  Thanks for all of your concern, prayers, good vibes, and to those who give blood, and are planning to do it soon.  I would still be doing it, but I don't think anyone wants my blood at this point.  (Who am I kidding, no one wanted it in the first place.)  :)

Welp, here we go again

So it's been one hell of a week.  I found out that my cousin died in an car accident at the beginning of the week.  Then I find out of the blue that my Aunt has cancer- I'm not exactly in on the details, as a lot of tests are waiting to come back or still need to be done.  Last night I started to make my way to Alma for the funeral, and about half way there, I felt like I was going to be sick- no big deal, I thought I would throw up, feel better, and be back on my merry way.  However, I just started throwing up blood.  For some reason medical personnel seem to get a little freaked out when that happens.  I called HB, to get directions to the nearest hospital, and made my way to the ER.  I get there, and they start pumping me with fluids, and do a rectal exam. (One of the things that make dying early not seem so bad, is that I thought I would get to miss out on all of the rectal exam fun- my friends who are male and 40 or over- I'm sorry).  This happens in a little town called Ionia, with a pretty podunk, dirty, and not very well staffed hospital.  (At one point, a nurse sopped up blood on a tray with some leftover saline solution, that she used to flush an IV with (that had blood backed up in) and an already bloodied piece of gauze. Awesome.  They decided that they couldn't do much there, so they asked me where I wanted to be transported.  I said Kalamazoo right away.  I just wanted to be closer to home.  My oncologist wanted me to go to U of M.  I said absolutely not.  I just wanted to be close to home.

They think that this isn't very serious right now.  I'm going for an upper GI scope in a few hours.  They stick a camera into my throat and down into my esophagus, stomach, and upper bowels to see what is happening, and hopefully fix the bleeding while they're there.

I've had to receive two blood transfusions while I'm in here.  I may need more.  Here's what I need all of you to do, if you can.  Please, please, please, go donate some blood.  This is such an easy way to help out, and it has helped people like me.  If you have the ability, please find a blood drive and donate.  And a special thanks go out to the unnamed O Positive donor- thank you for your generosity, you are making me feel so much better right now.  I'll post more later after I have this procedure done and find out some more information.

Sorry for all of those that I will miss seeing this weekend.  We'll catch up sometime soon when I'm feeling a bit better.

A small update

So the last few weeks have been pretty OK.  I managed to walk the dogs with HB twice this week.  Usually I don't have the stamina to walk that far.  They were both relatively short walks, under a mile, but I kept up, and it was really super nice to spend some time outside with HB with all of this beautiful weather we've been having.  I've also had a pretty darned good appetite this week, which I think helps with the walking.  The fluid hasn't seemed to have building up as quickly, which always makes me feel better.

I've had some problems with my catheter that I use to drain fluid from my abdomen.  It looks like my body has had enough with it in its current position, so on the 19th the docs at U of M are going to be removing this one, and put a new one in, this time on the left side of my abdomen.  Luckily, this surgery is a breeze, under  an hour and outpatient.

Other than that, things have been on the quiet side lately, which is much better than the opposite.  Hope you are all enjoying this great weather.  Thanks for reading!

A rainy morning post with sunny news

Last week on Monday HB and went to Ann Arbor for a follow up CT scan.  This was kind of an ordeal, because the night before we had just gotten back from the Wheatland Festival.  The CT scan was quick, and the staff in the Radiology unit at the hospital was great as always.  They are always on time, and do quick and friendly work.  I almost like going there because they treat me so good.  It helps that I was there twice a week to get ascites drained.  They know me by name, and remembered that I had a garden, even though I haven't been there in months.

I was supposed to have an appointment with my urological oncologist later that day to go over the results.  Long story short (and this is why I hate the cancer center at u of m), they changed the appointment to Friday.  They did this by letter, on the Thursday previous to the appointment.  We had Thursday and Friday to try and get things rescheduled or figured out before the appointment on Monday.  We didn't want HB to have to take another day off from work, and drive the 4 hours round trip, to wait in the office 2 hours past my scheduled appointment, to see the doctor for 3 minutes.  Yes, this is how that clinic has been operating at all of my past appointments.  They finally agreed to call me with the results on last Friday.  I was supposed to call a number between 8-4, and the doctor would call me back when he had a free minute.  I called at 8:15, gave them my info, and waited.  At around 2, I hadn't heard anything and called back.  They assured me that Dr. Hafez would call me before 4. At 5:30, I received a call from a nurse practitioner with the results.  A special thanks to HB for calling and getting all of this arranged.  I was ready to wash my hands of U of M, but she was persistent, and was awesome for getting this arranged for me.  Anyway, the news...

No growth since March!  No growth anywhere, kidneys, pancreas, or liver!  Hope this news brightens your day, especially on a day like today, like it has mine.

How Medical Marijuana May Have Quite Literally Saved My Life

I'm not going to lie.  July and August were pretty terrible.  The side effects of the cancer drug are getting worse.  There was a span of a few weeks where I couldn't keep much food down at all, and even when I could, I barely had any appetite.  My sympathies go out to any woman who had to deal with morning sickness, I know what it's like, and it's not fun at all.


That's when it would mainly hit.  Every morning, I would wake up, between 3:00 and 6:00, and have to make a mad dash downstairs to the bathroom.  Once there, I wouldn't be able to move from that spot for another few hours.  It left me completely exhausted, and I would end up sleeping most of the day to make up for it.


That's when I decided that I needed to talk to my doctor about it.   I knew that marijuana could help with fending off nausea and increasing my appetite.  My oncologist was all for it, but wasn't willing to sign the paperwork for Michigan’s Medical Marihuana Program.  His rationale was that since it's still illegal on the federal level, and that's where his medical license is through, he wasn't willing to take that risk.  Luckily, I found a doctor at a clinic in Kalamazoo who would see me.

I made an appointment, brought him a book off my medical records, and he promptly told me that I was one of the most "slam dunk" cases he had ever seen.  His office over-nighted the paper work, along with my application fee check.  I waited the 15 days to make sure I didn't get denied, and now I'm officially able to possess up to 2.5 ounces of marijuana.  I can't drive while I'm on it, not that I would anyway.  I can't smoke it in public.  However, it does mean that I don't have to feel like a criminal when I use it to manage symptoms, even though I still feel a bit weird being able to carry it around.  

During August, I lost 10 pounds because of the drug side-effects.  I've been legal to use marijuana for almost 3 weeks now, and I'm happy to report that I've only been sick a few times, and I'm starting to put a little weight back on.  (I was 137, today I'm 141!)  I know that the marijuana debate is a pretty heated topic.  But, I want you to know that when used in appropriate cases, it really does help.  I have been off the sutent for  few weeks now, for a short medicine holiday, which helps, but I still have some rough mornings here and there.


I owe a great big thank you to my cousin, Josh.  He is acting as my caregiver, and has helped me out a lot.  Thanks, Josh, life would have been a lot worse without your help.  

I'll be posting again soon about the trip that I Heather and I took to the Upper Peninsula a few weeks ago.  I had an idea for another upcoming blog post, and it requires your help.  I want to do a question and answer post, because I feel like people have a lot of questions, and may be afraid to ask.  I promise a no holds barred discussion.  Any topic is fair game, and I'll do my best to answer as honestly as possible.  I'll make sure that the comments section can have anonymous posting, if you'd rather ask something anonymously.  I hope you all are enjoying this beautiful fall weather.  Thanks for reading!

Still Alive!

Today I am supposed to be dead... or at least dying.  Maybe it wouldn't have been until this evening, but it didn't happen.  Today is the last day of my 6 month prognosis.  The doctors at U of M originally gave me 6 months to live back in February.  That has since changed, but this day is a day that HB and I have been counting down for months now.  Dreading, terrified of, and trying to prolong.  But, as the song above suggests, I'm still alive.  STILL ALIVE.  

I woke up this morning with happy, sappy tears in my eyes.  I saw HB off to work, and then I made myself a celebratory pork chop for breakfast.  My buddy Wayne was coming down to get on the train, so I drank some coffee on the front porch with him, and then I dropped him off.  I went to Meijer to get some groceries for dinner tonight, and I just beamed.  I was just in a really happy mood.  I never smile when I go to the store, it's one of my least favorite things to do.  I got my stuff for lasagna tonight, and what I needed for a cake for desert.

By the time I was home, I had realized that my happiness couldn't overwhelm my energy level, and in the excitement I had worn myself out a bit.  Woops.  Tonight, I'm making lasagna for dinner (one of my favorite meals) and a baking a cake in honor of the event.  It will be great.  

HB and I had originally kicked around the idea of a party, but neither of us had the time or energy to plan it, and it was going to be difficult to find a place where people for all sorts of locations could come.  We were going to call it the "Ron beat Death Extravaganza".  So I guess that's what the cake and lasagna will be tonight.  Now I'm off to go get some tomatoes from the garden to start on lasagna.

A note on the song, it's the end credits song for a video game called "Portal".  The voice is the villain in the game who is a computer that is leading you through a laboratory trying to kill you (Think HAL from 2001: A Space Odyssey)

The Garden: AKA "Operation: Hobo's Beard"

After reading my friend Amber's fantastic new blog (http://staywellfed.blogspot.com/), it has inspired me to tell you all about my garden.  This has been a project that has been in the planning since last summer, when I first moved in with HB.  With some awesome help from Doug and Heather, and Ryan's truck, we successfully built 2 8'x4' raised beds in our side yard.  The placement is quite perfect.  It gets full sun all day, except for the last 3 hours or so in the afternoon, when the sun seems to be the hottest.  It's close to the outside faucet, which means that watering is rather simple, which is good considering how dry this summer has been.

Doug and I got the dirt from the city of Kalamazoo's free compost pile.  The material is composted leaves and yard waste from the previous fall's curbside leaf pick-up.  Thanks for the great tip Kara and Dan!  The compost was dark and rich, and had a great earthy smell.  Some light sifting was required, as there was various debris that had accumulated.  Heather and I bought 2 flats of vegetables at a sale sponsored by the local fire department, which is a great cause, and has proven to be pretty great starter plants.  I made the way over-ambitious mistake of getting mostly tomatoes, one and a half flats to be exact.  (Note to self: next year, we can get away with significantly less, not that having too many tomatoes is a bad thing).

The plants were put planted in the first week of June, which is probably a little late, but things are exploding now.  When planted, the tomatoes took up all of one box, and 3/4 of the other, leaving little room for the cauliflower and cayenne pepper plants that we also purchased.  In fact, the tomatoes have now kind of overtaken everything, and killed off the chiles and all but one of the cauliflowers.  Also in my over-ambition, I bought 20 packets of seeds of various other vegetables.  Heather and I did manage to make some room for 2 corn plants, which are flourishing.

Why Operation: Hobo's Beard?  Well, when first planted, the plants all made neat little rows, that were quite manageable.  A few weeks later, things were starting to get a bit unmanageable, as the tomato vines starting spreading out all over the place.  Dustin and Carrie came over, and with Heather's help, they built some dividers out of some old lattice for the tomatoes to grow up on.  A few weeks later, and the garden is now stretching out far beyond the reaches of the boxes.  My two 4'x8' boxes, with 4' of clearance in between, is now one mega garden, stretching out about 4' outside of both boxes.  It has the unkempt appearance of a lush Hobo's Beard.

Today, I munched on one of the cherry tomatoes that I plucked from the garden earlier this morning, and it was a near religious experience.  There is something so extremely gratifying about eating a sun-warmed, fresh from the vine tomato, especially one that you've spent time and money and love and care developing.  I imagine that this is sort of what it's like having kids, except I doubt kids are that delicious.  I've been able to pull out about a dozen cherry tomatoes so far, and about the same of a variety called "Sol", that are a little larger than a golf ball, and have an amazing fleshy texture, and not too acidic.  As soon as these start exploding (which is any day now), I think they will go into a delicious soup.

Hope you all don't mind a non-medical related post, I'm just super-excited, and super-proud, and super-thankful for this thing, like a kid showing off his new shiny toy.  I'll post some pictures of the whole process soon.

The current state of affairs

This is a tremendously hard topic to publicly discuss for a number of reasons.  First, it's hard for me to accept weakness (stupid, stupid pride).  Second, I hate to dwell on the negative.  Third, I hate to make people worry.  It is time to put that aside, partially for my own sanity, and partially just so that everyone has a better idea of what I'm going through.  For the most part, when people see me, I'm usually at a better time, or if I'm not, I get my shit together enough to pretend and pull it off.  This notion is silly, and very counterproductive, as it usually wears me out even further.  From now on, I'm going to try to put forth a more honest version of me.  This may require some help on all of your parts.  If you ask me how I'm doing, and I say that I'm ok, please ask me how I'm really doing.  Ok falls on this huge grey area that can mean, I feel like I'm going to puke my guts out, to I feel like I could walk a mile.

On to the dirty bits.

This past week has been one of the roughest that I've experienced.  Although, it hasn't really come out of nowhere.  Things have been degrading for a while now, and each round of the drugs comes with more side effects.  I'm half-way through a cycle of Sutent (4 weeks on, 2 off), and true to form, this is when things go downhill for me.  HB and I got back from a trip to Alma on Monday, and from Tuesday on, I've felt like hell. I've had no appetite, liver pain, nausea, vomiting, fatigue, weakness, and diarrhea.  Today is the first day since we've returned from Alma that I haven't spent the entire day on the couch, unable to move.  Today is the first day that I've been able to eat some semblance of a meal.  I'm still fatigued as hell, but having an appetite is a good first step.

The fatigue is the next issue, after not being able to eat/being nauseous.  It feels like I've got the flu and run a 5k all at the same time.  I tire really easily.  Stairs are pretty difficult at best.  I need to take at least one nap per day. Some days this is not enough.  I can get through most chores, but I need to take frequent breaks.  For instance, I can vacuum the living room floor, but I need to take a break before I move on to another room.  It's really frustrating to have gone from working a line in a busy kitchen to this.

I hope you all aren't freaked out by this.  It's not meant to make anyone worry more, just to let you know a little bit more about what life is like for me.  I just want you all to know that I will do my best to be more honest with all of you, and myself, about how I'm actually doing.

Why Captain America is an important movie

Before you think that I've gone off the deep end into a pool full of my own nerd-fluid, hear me out.

A few years ago, I heard that they had given this movie the green-light.  Never before had I been this excited about a movie.  I started researching who the cast was going to be, found clips and previews, and even set up a section in my google news feed for the film.  I'm a huge Captain America fan.  Something about the wimpy nerd turned hero has always been close to my wimpy nerd heart.  The fact that Captain America came to be during World War II, and was first seen clobbering Nazis, probably the closest thing to a super-villain group this world has ever seen, makes it more awesome.  I also really loved Captain America in the whole Marvel Civil War run, he was great in that.

The first time I saw the official long-cut trailer was a week or two before I first got diagnosed with all of this crap.  I was super excited and couldn't wait for summer to get here so I could see the movie.

It's funny the weird little thoughts that go through your head when someone has told you that you don't have long to live.  Obviously the first things were, holy crap, Heather.  How is she going to deal with this, and it's going to be really terrible to be gone and not have her.  And the same goes for my family, and friends.  I'm not going to be able to see my nephew grow up.  Stuff along those lines.  After a while though, the stupid things start to creep in.  One of the first silly thoughts was, "Man, I'm not going to be around to see Captain America".  That silly thought hit me the hardest.

Long story short, last weekend, Doug, Jake, Wayne, and I finally saw the movie.  It was glorious, partially because I'm some sort of uber-nerd, and partially because it was an important milestone.  I made it.  I lasted longer than some thought.  It's the sort of boon to my confidence that I've needed as of late.  So thanks to the guys for coming along.  It was a milestone I will not forget.

Oh, and just in case you were wondering, it really was a good movie, great for a comic book movie.  You should all see it.  I reluctantly saw it in 3D (reluctantly because I am annoyed with the "every movie is now in 3D craze we're in), and they even did a pretty decent job utilizing the 3D effects in a way that complimented the movie, rather than "Hey, get all of the 3D effects in while you can" mentality that a lot of 3D movies have.  To see what I mean, wait for the shield to bounce off a tank, Wayne and I both ducked.

More soon.  I'm trying to work on a way to make some video blogs (I will never call it a "Vlog", unless you give me $10,000)  What do you think of that idea?