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?

It ain't about how hard you hit

The visualization of the catfish is starting to feel far too passive for what I'm dealing with.  It is relaxing and meditative for sure, but it is starting to feel like I'm fighting a battle with the wrong weapon.  Wrong for me anyway.  I feel like I'm in a bit of a slump.  Not that I feel like I'm getting more sick, just that it feels like I'm settling into a rut of sorts, becoming complacent.  There is no time for complacency.  I feel like I need to be on my guard, and doing something to push back.  I've got an infinite amount of reasons to fight this thing, and I feel like I owe all of those reasons an earnest effort.

I decided today that I needed to watch some clips of Muhammad Ali.  Arguably the best boxer to ever live, he was also supremely confident in everything he did.  He didn't just beat his opponents in the ring, he started the fight before the boxing match even started.  He got in their heads.  He let them know just how great he was, and just how much he would punish them when the match did start.  That's what I need, I realized today.  I need to not only make this a physical fight, I need to make this a mental one too.  It's one thing to be optimistic, it's another entirely different thing to be confident.  I need to not only be fast, tough, and strong physically, I need to be that mentally, too.  I need to have the confidence, and beat this disease with my mind, not just my body.

I stumbled upon this (admittedly very cheesy) video while watching Muhammad Ali annihilate his opponents.  It's a video clip from the movie Snatch, set to some speeches that Muhammad Ali gave, as well as some quotes from one or some of the Rocky movies.  Some of my favorite lines from Muhammad Ali are:
    
    -"Only last week, I murdered a rock, injured a stone, hospitalized a brick, I'm so mean I make  medicine sick"
    -"Let me tell you something you already know, the world ain't all sunshine and rainbows, its a very mean and nasty place and I don't care how tough you are, it will beat you to your knees and keep you there permanently if you let it.  You, me, or nobody, is gonna hit as hard as life; but it ain't about how hard you hit, its about how hard you can get hit and keep moving forward, how much you can take and keep moving forward.  Thats how winning is done."


Here's the video: http://www.youtube.com/watch?v=lqpQzT1Kbuk&feature=player_embedded

Edit: I added the link to the video because the embedded video wasn't working on my iPod.

My mom emailed me, so I figured it's time to post

My mom emailed today to ask when I was going to post again, so I guess that means it has been a while.  There's lots to update, so hang on to your butts.

My family put on a benefit auction and chili dinner for me a few weeks ago.  It was a great day.  Unfortunately, I was a little under the weather with a toothache.  I want to apologize to those who came and I wasn't able to talk to, and to those I wasn't able to spend more time with.  There were so many people there, it was amazing.  Thanks to everyone who helped organize, donated to, and came to the benefit.  It was a lot of fun, and it meant a lot to see all of you.

Onto the issue of the tooth.  A few days after the benefit, I had to have two teeth extracted.  Holy poop.  The first day was pretty terrible, as far as pain goes, but after that, things were merely tender.  It did make eating a little tricky, which is something that I can't afford to be tricky at this point.  Luckily, things healed up pretty quick, and I was back to eating as normal by Friday.

Just in time for the Highland Festival!  I know that it's not everyone's bag, but I happen to enjoy it.  The only thing I don't like about the Highland Festival are the drivers.  I figured out the formula for driving in Alma, and that is, if the speed limit is 40 or above, you drive 30.  If the speed limit is below 40, you drive 20.  That rule held fast as I checker-boarded the slow drivers in mini-vans and pick-up trucks on Wright Ave.

I spent Saturday in my favorite way, and that is mozying about the parade route, catching up with people that I haven't seen in a while.  Also, eating a hot dog and an entire bag of cotton candy at 10 am, is pretty much one of the best things a person can do.  After the parade, we went to HB's Aunt and Uncle's house for the traditional cook-out, where I pigged out on more great food.  HB and I drove to the festival and walked around, catching up with friends, seeing the sites, and eating more food.  (Well, I did at least.)  I tried the infamous Irn-Bru for the first time.  It is terrible, and I would avoid it at all costs.  HB said it tastes like chewed up bubble gum from under a table.  I agree.

After a much needed nap, we ended the night at the beer tent.  I decided that since they had some good scotch, I would attempt to have my one occasional drink that I was told I could have.  I had a small sip of the scotch, just to savor things, and about 3 minutes later, I'm in the corner barfing.  It was not good.  I guess I can't drink anymore afterall.

After all of this excitement I slept all day Sunday.  And most of Monday.  And most of Tuesday.  It wore me out, but it was totally worth it.  I had a lot of fun (except for the barfing).

So that's a lot of news.  I've been trying to get things working in order to do some of these posts as video posts, but I ran out of time today.  Hopefully the next post will work out.  (and not be in a month)

Weird

So my last post with the good news has mysteriously disappeared.  I tried to update the blog last night while watching the Red Wings game, but blogger was down for maintenance.  I'm assuming it has something to do with that.  I also noticed that another blog I read has their last post missing as well.  I'll have to contact tech support and see if anything can be done.

I changed the look and feel of the site a little bit, to make it a little less standard template-y.  Let me know what you think.  I also added a needs/wants list to the right side of the page.  I'll keep you updated on the missing post.  That was a really happy one, and I want it back, darn it!

The best birthday present I could muster for my little brother

So this tube in my abdomen is pretty awesome.  I am draining 1-2 liters every day, and keeping the fluid down like this is amazing.  Not only that, but I get roughly 12 hours back in my week, not having to drive to Ann Arbor twice a week now.  My only complaint is that it is itchy as all get out, but I guess that's a good sign, right?  The pain is down considerably, and things seem to be getting better.

My little brother turned 27 yesterday (Happy Birthday Doug!) and this just happened to coincide with a trip to Ann Arbor for my monthly oncology/stab needles in my butt extravaganza.  The news is looking pretty darned great, actually.  My blood tests came back all within a normal healthy range.  The Khan was impressed with my energy levels as of late, and was even more impressed when she heard that I had mowed the lawn the day before.  To be fair, I did need to take some breaks, but I think that was more due to the soreness from the surgery site than anything.  She was happy to hear that I'm growing a garden, and likes that I'm trying to get more active.  In terms of treatment, she used words like years, instead of months!  She's impressed with the way that the cancer is responding to the treatment, and it gave me a lot of hope and reassured me.  She's going to send a referral to the West Michigan Cancer Center for me, so that I can start getting hooked up with treatments a bit closer to home.

So, to sum this all up, I hope you are all prepared to have to have me around for a bit longer than most anticipated.  I know this will disappoint some of you.  (Damn the lack of a sarcasm font)  I guess what I want to say more than anything else is thank you.  Thank you for taking the time to follow my inconsistently timed ramblings.  Thank you for your thoughts, words of encouragement, and prayers.  Thanks for your hugs.  Thanks for the donations of every kind, from gas cards, to ensure, to gift cards for groceries.  Thanks for putting on, donating to, and showing up for benefits.  I know that HB thanks all of you too.  We couldn't do this without all of your support.  So here's to years instead of months, more time to laugh and love, more hugs, and more memories.  I love and thank all of you so much.

Tiny Update

Just wanted to let you all know that the surgery came out well.  I now have a 6 inch tube sticking out of my abdomen.  Surgery went off without a hitch, I'm just a bit sore, and out of it from the happy pills for the pain.  I'll update with more details later.

It's been a while

Lots to update since my last post.  2 amazing benefits, my birthday, and a trip to Ohio.

The benefit at Rubbles was an amazing time.  Thanks to all of the acts, Rubbles for hosting, staff for volunteering, raffle prize donors, and all of the people who helped put it all together.  Also, thanks to everyone who showed up, donated, and had a great time with us.  HB and I were blown away by all of your support, and had a lot of fun, too!  It was also great to be up on stage at Rubbles again, and even though I'm a lot weaker than I used to be, it was mighty awesome to get my horn out and play again.  After the show, HB, Dustin, Carrie, and I also had a bit of an adventure with a skunk.

While talking about benefits, last night, the Knights of Columbus Council 1616 in Kalamazoo, hosted a euchre tournament benefit for us.  Although I was pretty exhausted, we both had a really good time, and enjoyed ourselves.  Thanks to those who came out, played euchre, donated, and had a fun time with HB and I.  Apparently it was a really good showing of people as compared to when they play at other times.

Also, I should thank everyone for their hugs.  One of my favorite things in the world is a hug, and I've had plenty of great ones lately.  It really cheers me up, and makes me feel better, especially when I'm tired and not feeling well.

My birthday was a blast.  I started out the day by finishing up a few last minute details before the house showing, and then made my way in to Dustin and Carrie's house for the festivities.  HB met us after work, and we went out to eat at the Sushi Hibachi Buffet in town (it tastes about as good as it sounds, but I kind of like those kind of places) and I ate enough sub-par sushi (with no actual raw fish) to make my head explode.  It was great to pig out like that.  We went back to Dustin and Carrie's and watched some Rifftrax (the guys from Mystery Science Theater 3000's newest project) and Carrie made me a birthday cake.  She put a ton of candles on it, and still being a wind bag, I managed to get them all in one breath.

Friday morning I woke up, and headed to Ann Arbor to get my blood drawn and pick up Dan McDonald for our adventure to Ashland for the Maplerock Jazz Festival.  We made it down in time to catch the last couple of high school bands and the Ashland University Jazz Orchestra's rehearsal before the show that night.  Scott Garlock is the director of the band, and my former trombone instructor, and good friend.  He invited Dan and I to dinner with his family and the guest artists, which was awfully cool of him to do.  We ate some pretty good Italian food and had great conversation.  Dan and I got checked into our hotel and came back for the performance.

I don't know what Scott is feeding the trombone section since I left, but I was blown away.  The section was pretty darned good while I was there, but now they are eating nothing but hard-boiled eggs and human growth hormone.  They were outstanding.  The concert was really great.  It was also good to see some other folks that I'd gone to school with, as I haven't seen them in probably 6 years or so.  Scott then invited us out to the after showing hang out time with the artists, also very cool of him.  At this point, I'd been up since 5 am, plus about 5 hours of driving, so I was pretty beat.  Dan and I hung out until around midnight and went to get some sleep.

The next morning, Dan and I had breakfast with Scott, his fiance Emily, and his son Satch.  The food was excellent, but the service left something to be desired.  There was more great conversation to be had, and then Dan and I had to go.

Last night, I slept like I'd never slept a wink in my life.  I think I got almost 10 hours of sleep, which is unusual for me these days.  HB and Dustin went out and got breakfast for all of us, and we hung out and watched conspiracy theory documentaries on the history channel about the Kennedy and Lincoln assassinations.  HB and I came home and she mowed the lawn while I've been plunking away at this ridiculously long, and long time coming post.  We're going to get some dinner, and then it's back to Dustin and Carrie's to crash at their house again (we owe you guys big time), because in the morning, Dustin and I leave at 5:30 to go and get my shunt put in.  Hopefully this will mean that I won't have to make as many trips to Ann Arbor, and I can drain myself when I feel like I need it, rather than having to wait for the next appointment.  I'll update things when I'm feeling up to it this week.  The shunt is going to be a little tube sticking out from my abdomen so that I can drain things myself.  It sounds like it's going to be a couple of hour procedure, involving weaving plastic tubing through my skin and into my paritoneal cavity.  Fun times.

Not every day is a good day

It's the first 80 degree day of the year, there's not a cloud in the sky.  The flowers are out, the birds are chirping, and there's a really great breeze coming in through our open windows.  Everything around me feels vibrant and alive.  Personally, I feel like I've been run over by a steam roller.

I haven't really gone into what a bad day is like for me, and I don't think most people understand what I mean when I say I'm having a bad day.  So here it goes.  I have absolutely no energy.  Standing up requires a concentrated effort, and about 15 seconds of me psyching myself up for it.  Walking feels like I'm moving my legs through drying concrete, and my pace is really slow.  Stairs are almost out of the question.  Going upstairs in our house (which is like 10 stairs up) requires a break about half way up.  If I'm laying down, I almost need help sitting up.  For those of you who've seen "The Princess Bride", I feel like I've been strapped to the machine that Wesley is tortured in that takes years of his life away.

There are a few reasons, I think for a bad day like today.  I'm full of fluid, and won't be drained again until Tuesday.  Being full of fluid means that I don't have much of an appetite.  I've found that it's important for me to get a good 20-30 grams of protein early in start of my day.  If I don't get that, I feel much like I do now.  I couldn't eat that much this morning, making this the most likely culprit.  The other problem, is the injection that stops the diarrhea is wearing off, and I've been cursed with that for the last few days.  The diarrhea means that the little food I am able to get in, passes through too quickly to really make a huge difference.  Hopefully by Wednesday or Thursday, this will all be in the past, and I'll be feeling relatively normal again.

Meanwhile, HB has been working her butt off today.  I'm so thankful to have her, and her being willing to pick up all of the slack when I don't feel good.  She let me nap in the hammock, which was wonderful while she was busy with some outside chores.  I did start to get nervous with the turkey vulture zooming around overhead.  Hopefully he was after something dead in the field behind me.

What a terrible day to be down and out.  I was looking forward to today, and being outside with HB doing chores and having fun.  It's days like today that really hit my optimism about this illness the hardest.  I hope that this post doesn't scare you, or gross you out, it totally has the potential for that.  I just wanted to share what my difficult days are like, because most of my posts seem to be cheerful and optimistic.  Tomorrow is a new day, and hopefully it will be a bit better, that's how I look at it.  Tuesday will be a long day, but will make things a lot better.  Thanks for reading, and I hope to see you this next weekend at Rubbles.  Here's some info if you don't know about it:  http://www.facebook.com/event.php?eid=117339808343493

A full day already

What a morning.  I woke up and had some coffee with the dogs before HB woke up.  I watched some "No Reservations", the Montana episode to be exact.  How beautiful that place is.  I learned about the artist Russell Chatham and the writer Jim Harrison on the episode, and I instantly became fans of both.  While HB was showering I spent some time looking at some of Chatham's paintings.  I'm a big fan of his landscape work.  I don't normally get art, but his speaks to me.

I spent some time with HB while she was getting ready, and made her lunch.  This is really the best way to start any day, and I'm thankful for each and every one that I get with her.  After she left, I made some cappuccino in the cappuccino maker that my parents gave me for my birthday (thanks mom and dad!), and took the dogs outside.  What a gorgeous morning!  It's hazy and foggy out, and the spring birds are chirping up a storm.  The irises and crocuses are starting to come out, a sure sign that winter's grasp is finally starting to lose hold, and we'll soon see warmer days ahead.  I love foggy, soggy mornings like this (it must be my Scottish heritage).

It's only 9:30 am, and I feel like I've had a full day of wonder and beauty and learning and closeness with loved ones.  To make the day even better, I get to spend the rest of it with my sister who is visiting (when she finally decides to wake up).  I have plans to make some bacon and eggs and hang out with her, which hasn't happened in far too long.

In medical news, I finally had my consultation for the shunt that will hopefully alleviate the fluid build-up.  There are two options they are looking at.  The first option, would be to re-route the vein that is blocked into another artery in my neck, thereby recycling the fluid back into my body.  The second option is to place a spigot into my abdomen, that I can use to drain the fluid off myself.  The doctors are going to discuss at the tumor board meeting, and decide which option would be best for me.  Either is good in my book, although the first is more enticing.  I think recycling would be better than having a spigot hanging out of my side.

I was in Alma briefly for a funeral yesterday.  That was pretty tough. Randy donated a bunch of money in my name to Relay for Life.  I liked Randy a lot, even though I didn't know him all that well.  He was a kind guy, far more kind than most I meet, and he will surely be missed.  Some day I'll see him again, and I'll get to thank him for his kindness.

Here's one of Chatham's paintings, called "Summer on the Clark Fork".

Just a few housekeeping things

Hey Everyone,

I added a gadget to the main page so that you can follow the blog by email.  If it works as it says it will, you should get notified by email whenever I update.  Let me know if it doesn't seem to be working.

HB gave me a great idea to put a needs/wants list on my blog.  I feel weird asking for help with things, but I've always been that way.  I'll add that to the front page as well.  I'm going to do some more editing of the layout in the next few days as well, to spice things up and get things a little bit more organized.

I'm heading to Ann Arbor today to get drained again.  I called Dr. Khan's clinic the other day to try and get the draining moved to somewhere a little more local.  They weren't very helpful, and told me that I'd need to get that done through my primary care physician.  Well, I don't have one.  I haven't been in Kalamazoo that long, and I haven't had insurance either, hence, no treatment before all of this started, and no primary care doctor.  Grrrr... At least they're hooking me up with the paperwork for a handicap permit.  I kind of hate asking for it, and I probably won't use it much, but on days when I just don't have the energy to do things, it will come in handy.  I've got a call out to the West Michigan Cancer Center here in Kalamazoo to hopefully get all of my treatments moved here.  They've run trials on the same cancer and drug combo I'm on currently, and since Dr. Khan is leaving in a month, I think this change makes the most sense.  Sorry Ann Arbor friends, I'll probably be over there less frequently.  I think my Urology stuff will still be over there though, so maybe I'll be around a little bit.

Spring is springing (finally) and it's getting me really excited to grow some of my own food.  My brother is coming in a few weeks to help me put in a couple of raised beds.  If any of you have any experience in this, I would appreciate any advice you could give me.  The soil out here isn't very good with all of the walnut trees making the soil acidic, and I don't have a tiller, so I think this makes the most sense.  I haven't done anything with a garden since I was a kid, but I remember how awesome it was to have fresh vegetables on hand all the time.

I've been reading a ton on cooking, especially charcuterie, and it's got me excited to do that as well.  I don't know how HB will feel about random hunks of meat hanging for a few weeks at a time in the house though.  That may be a tricky one to explain.  :)  I think all of this is just a tremendous case of spring fever.  I've been feeling good because I've been off the cancer drug for a few weeks to let my body catch up.  Today is the last day of that.  Tomorrow I start the Sutent again, both with encouragement and discouragement.  I'm hopeful that the drug will continue working, and maybe even start to shrink things, but it does sap my energy level a lot.  I get pretty fatigued while I'm on it.  When I started it, it took a week or two to start feeling that way, so with some luck, I'll have a few more weeks of good energy levels.  The other thing that may (read most likely) have contributed to this increase in energy is finally figuring out what my body needs in the way of protein and calories.  I do kind of feel like I'm just cramming food in my face all day.  It's not all bad, but does feel like a chore sometimes.  I'm eating 6 or 7 times a day.  I kind of feel like the kid who gets caught smoking and the parents make him smoke the entire pack.

Oh, in great news, I finally (I've been waiting for a month now) got an appointment for the consultation for the shunt, which will hopefully help stop or limit the fluid build up in my abdomen.  I go for that on Tuesday.  Hooray.

Ok, now that this quick post is a becoming a novella, I'll leave it here.  I'll post again when I get the changes to the blog the way I want them.  Thanks for reading!

When it rains...

Today started off great!  I woke up feeling pretty fantastic after getting drained yesterday, and I made an amazing smoothie with yogurt, whole milk, frozen berries, cream, and a strawberry instant breakfast packet.  It was full of both calories and protein, and I really felt great after eating it, not to mention that it was delicious.  I was excited about feeling so good, because I really needed to go to the grocery store to get stocked back up on things, and it's always easier to tackle a Meijer trip when I'm not feeling fatigued.

Last night I noticed that I had a belt in my car that was pretty squeaky, so I figured on my way home I'd pick up the belt and replace it in the next day or two.  I had a car full of pop bottles to take back, which is probably my least favorite thing ever, but even that didn't get me down.  I get to Meijer, and pop my headphones in, which makes wandering around the store a lot easier.  For some reason, listening to music while I'm walking around doesn't seem to wear me out as much.  I found this out while at some recent appointments in Ann Arbor.  I did my shopping and just as I was checking out I was finishing the album, pretty great timing.  I was listening to Soul Coughing's "El Oso" for anyone wondering.  I get out to my car and unload, starting to feel a little tired, as I had just spent about an hour wandering around Meijer.  I start my car to let it start warming up while I'm loading, and the squeaking gets worse.  Usually it goes away after a minute or two of warming up, but it kept going.  I go to pull out of my parking spot, and I notice that the wheel is incredibly difficult to steer.  Great, the power steering belt is what's slipping, and this will make the drive home pretty laborious.  Just as I'm backing out I hear a snap, the squeaking stops, and there's smoke coming out of my hood.  I pull back into the spot, turn off my car, and pop the hood.  The belt melted through.  Not having any tools with me, I call up Jim at Muffler Man and see if they can fit me in.  I've had them work on my car a few times before, and they do really great work, at a really great price.  He said it wouldn't be a problem, but it would take about an hour to get my car in.  I ask him to reserve me a spot, and luckily, it's not too far from where I am.

I make my way down the road, with no power steering, and pull in to Muffler Man.  Jim remembers me, and I show him the belt I had plucked out.  I sit down and wait.  They finally get to my car.  The guy working on my car, Jake, runs in and says, "You'd better come check this out".  I come out to the garage with him, and he shows me that my water pump has seized up completely.  In fact, an hour and a half after pulling in, the bearing is still smoking.  I know that water pumps are fairly inexpensive, I helped a buddy change his on his Saturn.  The problem with mine, is that you have to take out an engine mount to get to the pump.  To compound this, in 1989 Toyota made 8 different models of Corolla.  Each one is the same basic design, but there are two different water pumps for the 8 different models, as well as 4 different belts.  Each car has two belts, but again, there are different belt sizes.  Ugh.  So, they have to order both pumps, and all 4 belts, as they don't want to tear the car apart, and then order the parts.  Don't worry, they'll return what they don't use.  Not what I needed to hear, especially when I've got groceries that have been sitting in the car for the last hour and a half.  Luckily, it was Dustin and Carrie to the rescue again.  Dustin came and got me and the food, and let me use some space in their freezer/fridge until HB got out of work.  The worst part, is that I left at 9:30 am, and we didn't get home until almost 6.  The dogs were stuck inside that entire time.  Luckily, no messes.

Ugh, what a day.  I had planned on surprising HB and getting a bunch of chores done before she got home from work with all this extra energy I had.  Hopefully they get the car done tomorrow, so I can go get drained again before the weekend.  Stupid cars.  If this car hadn't been so good to me for the last couple of years I may have just lit it on fire, while laughing maniacally as it disintegrated in the Meijer parking lot.

But hey, here's to a day of feeling really darned good.  Those don't come as often as I'd like, but hopefully they continue.

A breakthrough!

So one thing that I don't think I've mentioned so far is my struggle to obtain medicaid coverage to pay for all of these treatments.  I knew something not good was going on late last fall, and wanted to get some sort of coverage in place before I actually went to the hospital.  There was an opening in Michigan's Adult Benefit Waiver program, which is a medicaid assistance program for the unemployed.  I also found out about a grant that the University of Michigan offers called "M-Support", which will cover costs at the hospital for the uninsured.  I applied for both and waited to hear back.

I heard back from M-Support first, and since my medicaid application was pending, they were held up on a decision until that came back as denied.  Medicaid, however, has been giving me the run around the whole time. HB and I decided in December that we couldn't wait any longer, and if Medicaid didn't come through, M-Support should, and really, my health is way too important to mess around with it any longer.

While we were in the hospital, I re-applied for medicaid through a company that the hospital contracts to help out with medicaid.  The company, Independent Medical Network, will determine if you seem to be a good candidate for medicaid, and will take care of the filing and any necessary paperwork needed afterwards.  They will also help you fight for an appeal in case you get denied the first time.  I went into the hospital on December 11th, and it was probably the 14th or 15th when I met with my worker from IMN.  Skip ahead the next 3 months to last week and me still calling waiting for an update.  My medicaid application has been pending for a month or so.  This has been a constant weight.  U of M has been really great about everything, not demanding any money before I can be seen in their clinics again, which is extremely generous on their part.

The other half of this equation is drug costs.  Most of the drugs I'm on are $4 generics, so it's relatively inexpensive, but not working, and having to drive 4 hours round trip every week adds up really fast.  However, the problem comes with the actual cancer drug.  Sutent is $8500 per month.  Luckily the hospital pharmacy filled my first prescription with the understanding that this was a one time deal, and if something didn't come through to pick it up, it would be added to the bill, and I wouldn't be able to receive more medicine until something came through.  We're in the process of filling out forms from the drug manufacturer to pay or at least defer some of the cost, but nothing involving paperwork is ever fast.  I actually took my last dose of Sutent today.  I have to take 2 weeks off to let my body recover, but 2 weeks is rarely enough time for paperwork to get pushed through anywhere, let alone a large drug conglomerate like Pfizer.  Panic was definitely starting to kick in.

I finally got a call back from my DHS worker today.  I have been approved for ongoing Medicaid, retroacted back to October 1st!  That means all of my hospital bills should be covered, and I shouldn't have to worry about any future treatments, and hopefully they cover the Sutent bill as well.  She told me this on the phone, and I just started crying.  I can't describe how much of a weight off from my shoulders this is.  I told her that she had just made my year.  I still get choked up recalling the story.  Jimmy Valvano was right, you need to do three things every day to really live.  You need to laugh, you need to think, and you need to let your emotions overtake you.  I posted the video a little while back, if you skipped over it, make sure you watch it. That's it for today, I think.  Have a happy St. Patrick's day, and drink some green beer for me to celebrate my good news, since I can't drink anymore.

A look into life with cancer

So I talked this morning about my trip to Ann Arbor.  I mentioned the long day, and the bowel sucking of the paracentesis.  What I did not mention is how a paracentesis makes you feel.  The first thing I should note, is that yes, it does make me feel lots better, but there is always a price.  When I get done, the first thing I notice is the weight loss.  4 liters is roughly 10 pounds of fluid.  When I stand up, my abdominal and back muscles aren't used to the extra weight being gone.  It's sort of like when you get done roller skating, and your feet still feel like they're being weighed down.  I can't help but sort of stoop for the first hour or so, until my muscles can readjust to the new weight and dimensions of my body cavity.

Another thing of note, is that draining that much fluid from your body is not necessarily good for it.  It freaks your kidneys out to lose that much water from your body.  In some cases, they need to put you on an IV of albumen to replace the proteins in your blood stream.  I've never had to have this.  What I can say is that when I stand up I feel like I just woke up from a long nap, but I didn't get any sleep.  I'm a bit light-headed and definitely weaker than I was before I had the fluid removed.  When they suck up your bowels, it causes them to cramp for the rest of the day.

Well, all of this was just to prep you for my trip to Walmart today.  On top of still being really crampy from the bowel sucking, I had 2 shots, one in each butt cheek.  The octreotide injections are a bit like tetanus shots, in that they make the affected area sore for a few days.  Today, I was really sore.  I could walk, but I was slow, and I was also pretty fatigued.  I need some staple groceries, but I knew that the things I needed were pretty spread out around the store.  I was pretty embarrassed, but I asked the greeter if I could use a motorized cart.  You should all know that I have a pretty good stubborn streak, but I also know my limits.  Maybe the prideful solution would have been to wait another day to go to the store.  The greeter kind of scoffed at me, like I was some punk kid who just wanted to screw around with the cart.  Reluctantly, he led me to the nearest cart, and unplugged it for me.

I proceeded to do the most embarrassing shopping of my life.  I got dirty looks from everyone.  I don't look that sick, and really I'm not, I was just having an exceptionally bad day.  People cut me off like crazy, little kids stared, and couples muttered to themselves as I passed by.  I made my way back to the checkout with some milk, cream, frozen fruit, dried milk, and olive oil.  When I got to the check out, the clerk scoffed, and flashed a skeptical look to the patron in front of me.  I unloaded my goods onto the conveyor belt.  The clerk began to scan my items without even saying hello.  I asked how she was doing and she replied, "Good".  That's the only exchange of words we had.  I began to make my way outside, following behind a woman in another chair.  She was allowed to leave the store in her motorized cart to unload her items, I was not.  The greeter informed me that chairs were not allowed outside of the store.  Just a side note, this was not the same greeter who gave me the chair, however, she did check the receipt of the motorized chair lady that just scootered her way out the store.

I braced myself, and grabbed my items, which feel a lot heavier than they really are on days like today, and trudged my way out to my car, cursing the rudeness that I'd just experienced.  Also of note, this is not my attempt to bash any Walmart, or even this particular Walmart, as I feel I probably would have had a similar experience at any store.  I guess my point is, just because someone doesn't look like they need something, doesn't mean that they aren't actually in need.  The more you know, I guess.

Pretty Long Day

HB and I left for the hospital at 9 yesterday morning.  I should back up, at 7:30 or 8:00, HB actually made eggs on the stove, and they turned out great.  I'm really proud of her.  She can make scrambled eggs for me any time now.  My first appointment was with the nutritionist at 11.  Luckily, we could park in the cancer center parking.  That garage is far smaller, and you can only park there if you have an appointment in the cancer center, so you can usually find a decent spot without driving around for 20 minutes.

The nutritionist gave me a lot of helpful advice, and some products to try.  One of them was Carnation Instant Breakfast VHC (very high calorie).  These little guys pack an awesome 540 calories into 8 oz.  I'm excited to try them, and I can get them at cost from the pharmacy there.  My normal ensures are only 250 or 350 calories per 8 oz.  She also gave me a clinical strength ensure to try, these are the standard 350 calories, but include some specific ingredients to help restore muscle mass, which I could definitely use.

The nutritionist also told me that I should be eating between 2700 and 3000 calories a day, and around 87 grams of protein.  That seems like so much food to me, but she gave me some helpful hints on how I can boost the calorie and protein count of things.  One suggestion is to get some dry milk and mix it in with my whole milk.  I'm going to try it.  It practically doubles the calories and protein.  She also gave me a cookbook called Eating Through Cancer which I'm going to look through for some ideas.

After nutrition, it was off to get some blood drawn.  HB wisely suggested that we attempt to get my paracentesis time bumped up, because it was scheduled unrealistically tight between two other appointments that are always running pretty behind.  I talked to the scheduler, and she was like, of course we'll squeeze you in, we love you down here.  That makes me feel pretty good.  I like to be the ideal patient, the one that doctors and nurses want to work with.

The paracentesis went ok.  Dr. Dillman, who is awesome, and someone I would probably hang out with if I knew him differently, and has done this for me a few times before, was training a student in the procedure.  They had a hard time getting any fluid to come out at first, because he kept sucking up my bowel.  A little more about this procedure:  They look at my abdomen with an ultrasound to find the biggest pocket of fluid.  On the ultrasound, you see the layer of skin, a big black void area (that's the fluid), and some stuff that kind of looks like brains near the bottom of the screen.  The brain-looking-stuff is your bowels.  As the fluid is removed, the bowels will float towards the skin layer, because you're laying on your back, and your bowels have air in them.  The suction from the vacuum bottle can sometimes suck the floating bowel into the tube doing the draining.  It's not exactly painful, but it isn't the most pleasant thing either.  Imagine someone pinching a tiny part of your intestines, and you've got pretty much how it feels.  The biggest issue with this, is not the pain when it is happening, but the cramping that this causes down the road.  Believe it or not, your bowels don't like to get sucked up into a tiny straw.

Off to oncology, where HB and I met with Dr. Khan's PA, Bridgitte.  She's as awesome as Dr. Khan, which is great.  We did find out that Dr. Khan will be leaving in May, so I will get shuffled to another GI Oncologist in the clinic.  I hope that I get as lucky as I did with Dr. Khan.  The results of my CT scan show no changes.  NO CHANGES!  That's amazing news as far as I'm concerned.  In the 3 months, without much in the was of treatment, I had no changes.  My liver is functioning well within the normal range, surprisingly so, and there's only one enzyme that was elevated.  I am ecstatic.  I'm hopeful that continued treatments will start shrinking some of the masses, but only time will tell.  I don't actually see my oncologist again for another few months, so that is encouraging as well.

We met with the social worker, Chris, after oncology.  She's helping me get some funding to pay for the sutent, the one that costs $8500 a month.  Hopefully something comes through.  She also will be doing some counseling with me, which we started yesterday.  We'll see how it goes, as yesterday I was not in great shape to sit in more uncomfortable chairs.  At this point in the day, HB and I had eaten breakfast (the awesome eggs she made at 8), and we're sitting in the social worker's office as the clock is hitting 4 pm.  We were both famished, and luckily I had an ensure in my bag.  I need to pay attention to my appointment schedules better and make sure I give myself breaks.

The only thing left in the day was getting my octreotide injections, which are always my favorite.  We waited for nearly an hour to be seen, and then I was taken back to the injection room (which sounds like something you'd find in a dungeon) where I was greeted by the grumpiest looking nurse you can imagine.  Unfortunately for her, she only looks grumpy, and was a sweetheart.  She gave me my injections, and much to my surprise, they didn't really hurt.  I made sure to tell her how appreciative I was, and that I thought she was the best nurse at giving shots, which made her grin a lot.  Before I went into the room I was feeling pretty crappy, and I think a lot of it was because I was dreading these injections.  After getting them done so well, I came out feeling a lot better.  It's amazing what our brains can do to our bodies when we get all worked up about things.

HB drove me home, and we stopped at a KFC/Taco Bell for some much needed sustenance.  I've been craving fried chicken for a while, and she loves rice and beans and tortillas, so it worked out well.  It was a quick trip home in the rain, and when we got back, we had "Annie!" waiting for us from Netflix.  Overall, it was a long, but pretty good day.

Some things

I woke up to one of the prettiest sunrises I've ever seen this morning.  Some days, I wonder if I think they are so beautiful just because I get to see another one,  but this one was spectacular.  Pink and purple like the sky was on fire.  It was amazing.  HB and I are going to the hospital today for a long day.  I should get some results from the CT scan that I had on Friday.  I get some blood work, I get my injections, I get drained, and I finally get to meet with the dietitian.

My family is throwing me a benefit chili dinner in May to help with some of the costs of everything.  I really appreciate all of the hard work they are putting into this.  It's also overwhelming to see everyone who has confirmed that they are coming and those wanting to help out.  I thought I couldn't get more humbled, but again, was proven wrong.  Here's a link to the Facebook event, if you'd like to come, or want to share the event with others: http://www.facebook.com/event.php?eid=172215012828718

Maybe that's the lesson in this.  I think that about a lot of stuff.  What am I supposed to learn from this?  I don't think God does things without a purpose.  Maybe the purpose is to teach me to accept help from others, something else that I'm not very good at.  Whatever it is, I sure am learning a lot.  Sorry to get so philosophical in the morning.

I'll update things probably tomorrow, with any news of today's visit.  Thanks again for the outpouring of love and support and hugs and prayers.  I don't think I'll ever be able to express just how grateful I really am.

Humbled

Hey Gang,

Thanks for your words, and thoughts, and prayers, and encouragement, and tears, and hugs over the last few days.  You have made one of the hardest times in my life substantially easier to deal with.  Sorry that it's taken me this long to get something up, but this weekend was a whirlwind.  Not only did I post the blog, but on Saturday I had to break the news to my family.  It was a rough weekend.

We got back from Alma Sunday night, and I was up at 5 am Monday morning to head to Ann Arbor for some more appointments.  I had my first meeting with PsychOncology, which went ok.  They are going to have me see a therapist and have some medicine for me to try to help with the anxiety and depression.  I then got to get drained, which is awesome as always.  The last few times I've been lucky enough to get drained in the radiology department, rather than the medical procedures unit.  The people in radiology are amazing, and some of them remember me from when I was an inpatient.  In the medical procedures unit, I feel like I'm getting treated by an emergency room doctor who doesn't care who you are.  In fact, one doctor asked my what my interests were, and while I was explaining that I loved to cook, walked out of the room, never to be seen again.  Anyway, long story short, radiology is awesome, and I will continue to get drained there from now on.

On my way home, I found that it was awesome to barrel down the freeway in my junky car while listening to the "Scott Pilgrim vs. The World' soundtrack on as loud as I could stand it.  It was a great sunny day, one that warms up the car without the heater being on.  Other than the cramping that comes with getting drained sometimes, it was a nice drive home, with the combined sound of Beck and my broken muffler drowning out all of the stupid stuff for just a little while.

Oh, I also listened to James Brown, mostly while walking out of the hospital, but it gave me an idea for a blog post, so be ready for that soon.  Thanks again, to all of you.  All of your support makes me feel as strong as Superman.  Much love to all of you.