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.