Just a little bit of history repeating

So this is a weird post.

After everything we’ve shared in this journey so far, I’m not sure why this was so difficult to decide to put out there. The more I thought about it though, the more it just makes sense to.  It’s ALL part of story and while there’s been a few things I’ve left the details out on, there really hasn’t been anything I’ve purposely kept from you all.

As we’ve gone along in this process and have experienced various levels of pain and sickness, one thing we started to talk about was medical marijuana.
Yes, I admit that I have smoked marijuana recreationally in my 20’s.
-And yes, I know some of you out there are laughing right now.  Stop it.  I was an angel in my 20’s and this news is coming as a shock to some people.    😀

Medical marijuana is legal in the state of California with a doctor recommendation.  So with my personal history and the fact that I am an actual candidate for the service, I’m not sure why it was still so strange to do.
Part of the problem was while it is legal here in CA, it’s not legal federally.  This could pose some risks.  However, I think (and would hope) that they would be more concerned about the big boy ops than this stage IV cancer patient who’s having a few hits to try and get her dinner down.  But you never know.
The other part of the problem was how.  How do we get it?  How should I do it if I don’t want to smoke it.  How much would we need?  We eventually figured those would be answers we could find if we decided to get it.
And we did.

 I finally decided it could be a very big help through chemo and why not have another option that could help?

Getting “The Stuff”
We had a friend help us get the Dr. recommendation which pretty much amounted to filling out a bunch of paperwork and signing releases to my medical records.  I was given all of the info on how it all works and was sent my recommendation letter.
Now for the goods.
I’m not sure when it all started happening, but I did know that all of the dispensaries in San Diego were getting raided and shut down.  It’s a long explanation, but basically it is still legal for me to get, just more difficult.  To be honest though, I did see a few of these places before they shut down and I’m not sure I would’ve been very comfortable going in anyway.

So on recommendation from another friend, I got a website for “home delivery services”.  Now this seemed REALLY weird.  I couldn’t imagine how this was going to work.  The website seemed legit though and actually seemed to have a “medical” focus.  Soooo, why not?  Let’s call and find out!
The woman on the phone was super professional and informed me how their services worked.  She told me I could look on their website for the “menu of the day” but that they didn’t take any pre-orders.  We set up a time to meet here at the house and they would bring the menu to us.

The doorbell rang at our appointed time and there was a man standing there with a giant pizza delivery bag.   OK, this is going to be an experience!
We sat at the dining room table and he started showing me all of the goods he had in the bag.  He had different strains of marijuana, edibles, pills, teas etc.  Quite a variety I wasn’t expecting.  I explained that my main need for use would be for appetite.  That I’ve already been having trouble with it.  He was super helpful and picked out a few different strains.  And of course since we were first timers, he had all kinds of deals and freebies for me.  He was super helpful.

I ended up with enough of a variety to see what will work the best.  I wasn’t going to get any edibles, but really wanted to try the “jolly ranchers”.  Decided to try a brownie too.  Got a vaporizer so I don’t actually have to smoke.  Easier on the lungs and seems to last longer.

Trying It
As I said, I do have a history with this, but it’s been a VERY long time.  I was a little nervous.
The first time I got a little bit of a buzz and was able to eat my lunch a little more easier than normal.  It was good.  Nothing crazy.  Which is what I want.  While it sounds fun, I really don’t want to be high all the time.
I’ve done this a few times this week and it’s been good so far.

And then I decided to try one of those “jolly ranchers”…
The guy said I should consider just having a half.
I should’ve listened.
Let’s just say I got a little more “medicine” than I needed.  The first sign of it was reading the first draft of this blog post.  I don’t know that I saved it, but that was quite a read.  So I pretty much sat in my chair, watched TV and munched until the cats didn’t seem to be looking at me funny anymore.  The hilarious thing about all of this is my dream days in my early 20’s would be to get high in the recliner and watch TV.  Now that’s the one thing I can do and I want to do anything but.
God certainly has a sense of humor. 

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Let’s Go Chemo!

I started.

I was so scared and anxious the hours before I think I actually had a little panic attack.  I wasn’t even that nervous prior to surgery.
I guess chemo has always been such a nasty word.  Something that was horrible and something very misunderstood.  I didn’t really understand the process prior to yesterday.

I had an appointment with my oncologist first and they took more labs.  Luckily they’re able to take blood from the port I had installed at the hospital. It’s in the upper right side of my chest. It’s so much easier than having them find viens every time.  And usually missing so I’ll have giant bruises.
The doc said he was concerned about the amount of pain I’ve been having.  They took a CT last Thursday and compared it to the scans they took March 2.  The tumors in my liver have grown.  Significant enough for concern.  And he feels like that’s what has been increasing my pain.  The liver is encapsulated and doesn’t have anywhere to move when the tumors grow and push on everything.
He’s concerned about us going on our trip.  Initially we were going to cut back on the doses, go on the trip and start full doses when we come home.  Because of the pain increase and outcome of the scans, he decided we should up to the full dose and see how I feel.  See if it makes any difference in the next 2 weeks and if were clear to go.  That was a bit of a downer to hear, but I just have to keep doing what we need to do and hope for the best.

After the appointment we walked across the parking lot to the outpatient pavilion where the chemo suite is located.
The chemo suite is very nice.  There were more chairs and less space for each person than I had imagined, but it was very comfortable.  Each patient has their own recliner and TV stand.  I didn’t want to whip out my camera or even try to get a picture off the phone out of respect for all the people that were there.  I did find this pic online that kinda shows what it looks like.

They hooked an IV up to my port and started putting chemicals in.  They started with medications for side effects like nausea.  Then they started the chemo drugs.  It took almost 3 hours to get everything in.
I wasn’t sure if it was going to make me sick or sleepy or what it was going to be like at all. It was nothing for me.  Luckily I really didn’t feel anything.  MJ had her book and I brought technology and we just waited.  Seems like boredom was the biggest thing for me to deal with.  Who knows if this wil be true for future injections but I certainly will hope so.

There was a woman my age sitting to the left of me when we first came in. She left after about an hour and they brought a new patient.  Older gentleman who had that “I LOVE to talk about being sick and lots of other things you don’t like talking about” look in his eye.  I tried very hard to stay focused on doing things to not allow any engagement and managed to put that off for at least 1/2 or maybe even longer.  But then it happened.  I froze and swallowed a giant gulp.  I not only let there be a lapse but an opening for him to make a comment.  And I’d have to address him.  And it was over.  MJ is so much better at getting out of these things than I am and I knew she wasn’t going to be much help.  She buried her head in her book and I was left to nod and say “uh-huh” a bizzilion times.
And I was right.  LOVED talking about being sick.  Didn’t get to the other things so much because I was in a scramble to find an out.
Thank God my brother called.  He has no idea what I owe him for that call.

So now I take the rest of my chemo here at home.  I take pills every morning and night.
I was very fatigued this morning and I’m starting to get temperature sensitivity in my hands and feet.  Mostly cold.  I knew that was a possibility.  But that’s pretty much it so far.  I have very little appetite but I’m working on a remedy for that.
I do anticipate things to get worse.  Hopefully not though.  I can more than handle this.

Being home and chemo

Since being home from the hospital I can’t say that I’ve had very many great days.  I have quite a bit of pain from the tumors in my liver.  I also have “tumor fevers”.  I get fevers and overall feel achy and miserable.  Usually leads up to sweats that soak whatever clothes and how ever many layers I’m wearing.  Finding comfort isn’t always easy.  I do have some kick ass pain meds, but I don’t want to feel zapped out all the time either.

So my days lately have consisted of watching TV, sleeping or doing a jigsaw puzzle while listening to NPR.  I try to get some “exercise” in.  That usually means going to the store with MJ or walking around the garden.

I very much enjoy getting e-mail and messages from everyone, but I feel bad that I don’t always have the energy to respond.  Please know I really do appreciate all of you checking in though.  Hopefully things will start to turn around and I will feel well enough to get back to everyone.


I start chemo tomorrow.

I’d be lying if said I wasn’t scared shitless.
Fear of the unknown.  Not knowing what kind of reaction I’m going to have.  They have a list of common side effects, but EVERYONE reacts differently.
I’ve heard the first couple of rounds aren’t too bad.  We’ll see.

Please check in with me my warriors.  It may take me a little bit to get back to you or my response might be very light, but I do love hearing from everyone.  Now is the time to get that makeup on and start kicking ass!

I love you all!

Hospital Part 5 – Friends and home

Five posts to sum up the hospital experience!  It was quite the event.  Spending 10 days in the hospital is a LONG time but it really didn’t feel like it.  We were kept quite busy with family and friend visits.  There wasn’t one day that we didn’t have a visitor.  In fact, one nurse appreciated my popularity, but made me take a nap a couple of afternoons.

My dad decided to fly over from Phoenix last minute on both weekends.  Very pleasant surprise.  And then my bestie, Jen, flew in from Indiana and completely surprised me.  It was super awesome!  She could only stay the night, but it was so worth it.


And for those of you who came to visit when I was a little out of it, I’m sorry.  Probably wasn’t nearly as fun for you as it was for me 😀

After 10 days I was pretty much ready to go home, but I was also a bit anxious.  Nervous.  So much had changed and it was going to be a bit strange dealing with all of these new things at home.  You get used to knowing what to expect in the hospital.
Packing up after 10 days was crazy too.  Where did all of that stuff come from?!??

Despite the apprehensiveness, two furry kitty hugs reassured there’s no place like home.

 

Chewbacca

********WARNING********
This is another one of those TMI posts.

This post is all about the colostomy.  If you are interested in what it’s all about and how I’m feeling and dealing with it, read on.
Don’t need those kind of details?  Feel free to skip this post.

***********************************************

 When we discussed the surgery they explained that I would likely have a colostomy done.  I knew what the procedure meant but I wasn’t really sure what the whole thing would mean to my daily life.  Because of the condition I was in prior to surgery, I really didn’t have time to think about it either.

When I woke up from surgery and had enough awareness to notice the bag hanging from my belly, I honestly didn’t think too much of it at first.  Dealing with all of the pain the first few days after was my primary focus.  Eventually though I was obviously intrigued by this new “part” in my body.
They removed about 10cm of my colon including Johnny Carcinoma. They sewed up the end that connects to my anus and the other end comes out of the left side of my belly above my waistline.  My new belly hole is called a stoma.


It’s normal to not have bowel movements after a major surgery like mine so I really didn’t have to deal with this other than getting used to having a bag hanging off me.  Eventually though, we needed to get things going to see if everything was working OK.
I’ll be honest, after a few days I was getting excited to see how this was going to work.  I mean, it’s poop.  And that’s weird.  But it was still very fascinating and I started getting a little impatient waiting.

The first weird thing that happened and fact that I will share is that you have no control over your bowels any longer.  You can’t really feel when anything is about to happen.  The first time I realized this was the day that MJ left the hospital to go into work for the first time since the surgery.  It was just me in the room when a couple of nurses came in to check for bed sores.  They needed to roll me to my side to check my back.  The first time they tried to roll me it really hurt so they tried rolling me to the opposite side.  As they started there was a huge fart.  I was completely startled.  I looked sheepishly at them and asked if that was me. I guessed it was as there was a bubble in my bag.  They giggled and asked if that was my first time.  It was quite a moment.
Eventually I got used to it.  It kinda tickles.  They’re kinda like regular farts in that some of them are very loud and some are totally silent.  But the best part is they don’t smell 😀
I’m still trying to figure out when they’re going to come so when I’m out in public I can try to muffle the bag.  I just know that’s going to happen at a horrible time at least once.  You know, like durring prayer time at church?

They were ready to discharge me on the Saturday after surgery, but I still hadn’t had a bowel movement.  To get things rolling they started giving me laxatives and stool softeners. I walked laps around the hallways and would get very excited when a bag fart occurred.  Sad when that’s all it was.  It was on a hallway walk that we decided to name it Chewbacca.  My noisy sidekick.

After hours and hours of waiting and no action they decided to give me a suppository.  Here’s the strange thing…   they did it anally.  I’m pretty good at anatomy, so this really confused me.  I didn’t want to question them because, you know, they should know what they’re doing, but, um, yeah I didn’t think that was going to work anymore.  They said something about it stimulating all the bowels yadda yadda.  OK.  Well, it didn’t work.  Let’s just say that experience and whole night was something I not only ever want to repeat, but really don’t even want to talk about again.
So the next morning when the nurse came in with another suppository, I cried and begged for anything else.  She was so kind to get me some warm prune juice to try, but if it didn’t work it was going to be back up the butt time.
Luckily a few hours later as we walked the hall I thought I felt something so we ran back to my room.  Low and behold!  It worked!  And I’m not really sure what I was expecting to see, but it was poop!  Of course it would be, but for some reason it still startled me.
The ostomy nurse came by to show us how to empty, clean, change everything. He was a trip.  Kinda nerdy and very passionate about his job.  Super knowledgable.  He was kinda like the Rick Steves of ostomy.

So now I’m home with this new apparatus.  It’s not nearly as horrible as I thought it would be.  Not really difficult to deal with either once you get a routine down.  When you’re in the hospital they make you wear a clear bag so they can check everything. While interesting at first, it gets pretty gross.  Now that I’m home I get to wear a nice opaque one.
I haven’t been out much since the surgery so I haven’t had much practice in hiding it, but it doesn’t seem like that will be a big deal either.

There’s a model who has one.  I’d like to think I’ll look like this with mine…   HA!

Who would ever think you could make something like that look sexy?

Hospital Part 4 – Fall Risks

For the first 5 days or so after my surgery I was declared a “fall risk”.  Understandable since I had no abdominal muscles to support myself at all.
There were all kinds of things to alert and remind everyone of this risk.  There was a STOP sign in my room that indicated my risk with various codes that the nurses hopefully understood cause I had no idea what it all meant. There was also a little leaf on the sign as you came into my room.  Clever, huh?  Leaf?  Fall?

I had to wear these hot socks and the wrist band.

And depending on the nurse, they would turn on an alarm on my bed that would alert them if I tried to get up.  When I was starting to feel better and able to get up on my own I set that off a few times.  There was one nurse I think I annoyed with that.

Little did we know we had another fall risk in the room though…
In the middle of the night on Monday I was still in a great deal of pain and trying to find comfort in bed.  MJ stood at the side of my bed, held my hands and started walking me through a guided imagery session.  In a very calm and soothing voice she was getting me to relax my body and it was peaceful and starting to help when all of a sudden I watched her fall straight back and down on the floor.
She looked like she was trying to get up but couldn’t and was shaking. She wasn’t responding to me either.
I hit the nurse call button and started yelling for help.  The thing about not having functional abdominal muscles is that you can’t really scream with any kind of power either.  But I kept trying.  I tried getting MJ’s attention and she looked up and started hollering.
I couldn’t move so I just had to sit and watch this all play out.  It was rather terrifying.  I’m sure the nurses were there rather quickly but it seemed like it took forever.
Four nurses came in and started checking her out.  They took her vitals and got her water and food.  They suggested she go down to the ER but she was feeling better and didn’t think it was necessary.  She figured she was going to be in my room anyway if she started feeling bad.  She promised to stay awake for 4 hours, which she did and she was fine.  Had a good size goose bump on her head, but was totally fine otherwise.
I think she was so tired and stressed and everything else that comes with dealing with your spouse having major surgery that while she was doing the guided imagery for me I think she soothed herself out!

MJ said that before we left the hospital she wanted to put on a gown, wear my red socks and fall risk wrist band and start running and dancing around the hallways.  She never did do it, but the thought of it still makes me giggle.

Hospital Part 3 – Recovery

I don’t remember much of the first two days after surgery.  I remember having a catheter that I was more than excited to be rid of.  I couldn’t really move.  About the only thing I remember was being introduced to this guy…

That white stick with the green button became my best buddy for the next 6 days.
If you’ve never seen one before, that is called a PCA button.
PCA stands for Patient-Controlled Analgesia.  Analgesia means relief of pain.
Yes, that’s right…  when the center of that green portion lit up, I pressed it and was rewarded with a little push of Dilaudid through my IV.  For those of you who don’t know what Dilaudid is, well, frankly, I’m just sad for you.
OK, OK, it’s like Morphine. Only I’m pretty sure I heard Zeppelin when I pushed that button.  Don’t worry, it wasn’t giant hits and they spaced out the time, but still an experience everyone should get to have at least once in their life.

But I had to have all of those pain meds had to prepare me for this…

This is me trying to get up to go to the bathroom for the first time.  Looks like fun doesn’t it?  And that’s WITH pain meds.
It was one of the most painful things I can ever remember in my life.  I had help, but zero abdominal muscles.  My incision starts about 3 inches down from the center of my rib cage and goes 2 to 3 inches below my belly button.  It was a BIG cut.  Plus I have a stoma a little bit higher than my belly button on my left hand side.  They did a lot so I should’ve known how much recovery there would be.  I tried to prepare for it, but you can never really know.

The rest of the week went from the above pic to slowly being able to move more and more.  And then being able to sit in a chair for awhile up to walking laps in the hallway.  I admit there were times I had to pee and would cry a little knowing I would have to get up to do it.   Sometimes the nurses were sympathetic and give me an extra kick of the PCA.
Taking a shower was interesting and a bit humiliating.  The first one I was still pretty weak so I had to sit in a chair and get hosed down.  The second one wasn’t much better but I was able to stand for a bit more of that one.

My feet and legs were pretty swollen so I had to wear the very sexy compression socks and get my legs squeezed for a few days.  It made trying to find a comfortable way to sleep quite the challenge.  I had a really hard time with wanting to be out of bed but once I was out it was too painful.  Comfort was a real struggle for a few days.  And again, praise be the PCA!

I was only allowed to eat ice chips from Friday through Tuesday.  I didn’t really have an appetite, but who wants only ice chips for 5 days either?  I think it was Monday or Tuesday when the doc said I could have hard candy or gum.  MJ went and got me Life Savers.  Quite possibly the best tasting Life Savor I’ve ever had!
I was very excited to move up to clear liquids.  Can’t you tell?

Me and my Jello.