Support

When I don’t post for awhile it’s usually 1 of 3 things:

1. I’m keeping busy.  I’ve been trying my best to get back to as normal of a life as possible.  I’ve been going to band rehearsals and support groups and classes.  Keeping busy makes me feel like I’m crusin along just like everyone else.  Since I’m restricted in some things (like swimming)  this is really important to me.  And sometimes I have so much going on that I don’t even get the chance to come here and brag about all the cool stuff I’m doing.  Like cleaning toilets.

2. I have company.  And I LOVE it when company comes!  My dad has been out to visit a few times, my friend Melissa from my corps days was here for a week and most recently my mom was here.  Of course I wanna hang out with people while they’re here so I don’t tend to spend time on here when I have visitors.

3. I’m down/tired/drained.  This doesn’t happen too often, but it does happen.  Sometimes it’s the chemo and sometimes it’s just having cancer.  There’s a lot to process sometimes.

When I’ve been away from the blog, don’t feel like you’re pestering checking in.  I really do appreciate it.  I may not respond right away, but it’s nice to be thought of.

I went to my first support groups this last week.
The first one I went to was a young survivors group.  I was one of the oldest there.  It was mostly people in their late 20’s and early 30’s.  I have to say I honestly walked away from that group extremely grateful.  Listening to the stories I can honestly say that I’m good with where I’m at.  Some of the stories were just heartbreaking.
There was one woman who was diagnosed with uterine cancer at 32 while she and her husband were trying to have a baby.  She lost her chance at having a biological child.  She got through treatment and now her husband is leaving her.
There was a man who was about 27ish.  He had bladder cancer and has started having symptoms again but has no health insurance to pay for the scans to get checked out.  Poor guy is completely stressed out.
Another woman who was diagnosed at 22 has been fighting with her family and struggling through chemo.
Story after story.  I had nothing to share, really.

I also went to a Stage IV Survivor group.  I was by far the youngest in this group.  The stories in this group were equally heartbreaking.
There was a woman who has melanoma that has spread to her bones and head.  The doctors have told her there isn’t anything they can do for her.  Not even chemo.  She’s on a clinical trial pill that they have told her “will buy her some time”.
Devastating stories.
There were also stories of hope in this one too though.  I met a woman named Barbra.  She’s a 13 year stage IV survivor.  And she’s amazing!

The thing I got out of both of these groups is how important support is to me.  I may not connect with very many people in these groups, but I’m going to continue to go.  I can still learn something about myself from each person in both groups.  And I look forward to it.

Another thing I learned about support recently is I really do love visits and contact.  If you were planning a trip to SoCal, let me know.  We have extra room and I really love having guests.  Better yet, even if you weren’t planning a trip out this way, come on out!  And if you can’t make it, I understand.  How about a text?  Or FB message?  I love that too.  And if I don’t get back to you right away, I’m sorry, but I will eventually 🙂

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Interesting searches

Now for something a little different…

I thought I’d share a little funny behind the scenes of this blog for a moment.
If you’ve never done a website or blog you should know that most sites have back end information to help the webmaster promote their site.  Usually information like how many visitors, what country visitors are from, top commenter etc.
One of the statistics that I can see on the back end of my blog is the keywords put into a search engine to reach my site.  For instance, if someone Googles “colon cancer” and my site comes up in the search and they click on it, “colon cancer” will show up in the list of terms that I can see from the back end.

Here’s what the page looks like…

There’s at least a few hundred terms. I check these periodically and I just have to share some of the ones that have given me a good chuckle if not an outright belly laugh.  Many of them I have no idea why my blog would come up for those search terms, but I guess it did.  And now that I’m putting these directly into a post, the search terms should get even more interesting.

Here’s some of my favorites:

my anus hurts after pooping        – doesn’t sound pleasant
sore in crack of arse after arsehole causing itching       – really should get that checked out!
asshole comes out a little        – um…
why does my left side of my belly hurt when i press on it        – haha  I know it’s not funny for that person, but this one made me chuckle.
what is exactly in my left side nearly my waistline        – I don’t know and I don’t think a website will tell you
why do i have skin hanging out my anus        – eww
mexico hot air balloon resort rides        – why did this come up on my site?
why is my anus bleeding after        – after what???
i am itching & the bumps come more when i scratch a certain place       – where???
“are you fucking serious?”        – haha  yes.  yes I am.
when i poop my anus comes out        – I don’t think that’s supposed to happen.
pictures of where the bowel comes out of        – For what?
lump on my upper gum        – How is this connected to my blog?
why people with stomas have bowel movements        – why wouldn’t we?
insides coming out with bowel movement        – Another one?
red thing that comes out of my butt        – Interesting.
how to get a high white blood count        – why would you want one?
not having a baby but geting a kicking movement in my tummy        – ???
call me tomorrow        – haha  interesting thing to search
nursing facility images of frustration        – someone’s upset with their care
poop coming out of butt        – yes, that’s where it comes from
painful sores on anus hole        – ouch.
my anus has come out        – you should see someone about that
allan gamagami attitude        – haha this is my surgeon.  someones checking up on him.
i had a party last night sorry you couldn’t come        – that’s OK?
im tired love your face        – love yours too.
i’m tired need a break from facebook        – I guess I’m a good facebook break
fly comes out of skin        – WTF?
the fuck did you just say        – you heard me.
i have a white long lump growing out of my leg        – ick.
is my anus hole normal        – I have no idea.
2 hours later spongebob        – weird.
burger and fries with glass of tea        – sounds good

 

You probably think this post is about you

I’ve had 3 major infusions and 3 little ones.  I’m by no means the go-to person on all things chemo, but I’m starting to feel a little bit like a pro.  The last 3 times I’ve gone there have been new people sitting near me asking all of the same questions I did on my first day.  And I sit there and remember how terrifying that first time is.  Part of me wants to reach to and let them know it’s going to be OK.  The other part of me just wants to kick back, enjoy my Benadryl buzz and grub out on the munchies it gives me.  What can I say, I’m selfish like that sometimes.

The one new guy I’m pretty sure was also on team colon.  When you leave the hospital with a new colostomy, they send you home with this travel bag to put emergency supplies in while you’re out and about.  I usually try to keep on in my car.  This guy very adorably had his clutched under his arm and that look of sheer terror when he say down.  Now anyone else wouldn’t know what that bag is, but I do.  And I feel for him thinking that he had to bring the bag with him.  He’ll get used to it eventually and will leave it in the car.  But the newness of it and there’s a feeling like everyone in the world knows what is it and is staring at you.

Last week there was a new lady.  I’m not sure what kind of cancer she has.  She was asking the million questions as they were trying to find a vein for her hep-lock.  They had trouble but eventually got it.  Not without pain though.  After, the nurse brought over information for her about the power port.  It’s the thing in my chest that they use to give me my infusions.  After the nurse left, I told the woman that I had a port if she had any questions about it.  She asked a few questions and we started talking about it.  She said she was hesitant about it.  After a little while she said, “guess it’s one more vanity thing to deal with”.
While I would like to not have it, of course, I never really gave much thought to it like that.  They recommended it in the hospital and I just did it.  I really didn’t even know what it was going to look like. I just knew it was part of this process.  So I wondered what else she was told she’d have to do like, lose a breast?  Hair?  I guess I was resigned to all of that once I found out I had cancer.

You can’t have cancer and be vain.  You just can’t.

Unless you have a very mild cancer, you will have to deal with some kind of scar, bag, hair loss or some kind of change to your body.
So far I haven’t had to deal with losing my hair, but it was one of the first things I mentally prepared myself for.  I wasn’t thrilled with the idea, but I figured if it has to go I’ll have a mohawk for a day or two and then enjoy the low-maintenance head.
I was really not thrilled when I found out I was going to have a colostomy.  I mean, seriously, who wants to poop out of the side of their abdomen.  It is amazing technology yet horrifying. Especially when you first get it.  And I can tell you I’ve had my moments with it already that have not been pleasant at all.  Plus it’s difficult to hide.  I’m vain in that aspect of it, but I know it’s what needed to be done to save my life.  It’s all part of the process.

I feel bad for that woman.  Cancer is hard enough without the insecurities of vanity.  She will either buck up or she’s in for a tough road.
I’m happy I don’t care.  I guess it’s made that part of this journey pretty easy for me.

I went there…

I said I wouldn’t.  I’ve been trying to make sure I stay in the right head space.  Uttering those words would be painful.  I knew it.
I haven’t actually said it out loud, but the thoughts in my head have taken me to “that place”. The place I hopefully will not visit long of “why me”.

I really don’t think I’m deep in it.  I guess the thought had to come across my mind sooner or later.  I’m guessing the depression I’ve been experiencing hasn’t really helped either.  I just didn’t want to be that person.  I wanted to rise above it and be some kind of superhero when the reality is, I’m not.  I’m human just like everyone else.  And I think it’s safe to say that a normal human reaction to finding out you have a terminal disease is to ask “why me?”  I guess since I had been doing so well I figured I was beyond it.  Turns out I’m just a late bloomer.

I don’t know what caused me to get cancer.  I don’t have a great track record of taking care of myself, but there’s plenty of others out there that have done as much damage if not more that don’t have or never will get cancer.
And think the “why me” question started on a trip to the Santee Costco.  It’s always an adventure going there.  You literally see all walks of life in those isles.  And as I pass people I’d get a good look at them and what they have in their cart and I think, “I ran a marathon last year, how in the world is this person healthier than I am!?!??”  And of course, I’m making HUGE assumptions because I don’t know what their medical status is, but I just figure that everyone there must be healthier than I am.

I look around the chemo room when I’m there too and it seems like many people there are not there because of lifestyle choices.  Again, I’m making some assumptions, but there’s not overwhelmingly heavy people.  Perhaps a lot of smokers?  I’m not sure.  I just know that it doesn’t feel very fair sometimes.  I’m usually one of the youngest if not THE youngest person in the infusion room at any given time.  That certainly adds to my questioning.

The good news about all of this is it’s not something I hang on to.  I have my little moments here and there and then I move on.  I know I can’t dwell on it because it would eat me alive.
I haven’t made it to any of the support groups yet and I’m looking forward to it.  Hopefully hearing other people’s stories will help.  Hearing someone else say that they have the same feelings when they walk through the isles of Costco won’t make me feel like such an asshole when I do let myself “go there”.

New Chemo

They added a new chemo for me.  It’s called Cetuximab or Erbitux.  It’s another infusion and I get it every Tuesday.  They give me IV Benadryl before this one and that gives me the loopty loops.  I try to stay awake but I usually end up nodding off.  Luckily they have the nice reclining chairs to crash out in.
The side effects are minimal.  The only thing that bothers me is I get a rash on my face, neck and back.  It looks like bad acne.  Kinda hurts too.  I’ve been putting cremes on that have helped so its not too bad right now.  Doc said it’s actually a good sign that I have the rash.  I guess it means the meds are working.

Image

I guess you can’t really see too much in the photo.  It looks more like a sunburn now than anything.

So I still get “the big chemo” every 3 weeks.  That’s the Oxaliplatin and eventually Avastin.  Those are both IV infusions.  And then I take Xeloda orally for 2 weeks at a time with a week off between.

I forgot to post about the last big infusion I had almost 3 weeks ago.  They usually give me anti-nausea meds through the IV before the other drugs.  They started this one called Emend.  I was on the phone and as I went to hang up I started seeing stars and felt my chest start to tighten up.  I started having trouble breathing.  Luckily one of the nurses walked by and I was able to get her attention.  They were very quick to respond and within 5 minutes I was completely fine.  Scary though!!  I’ve never had any kind of allergic reaction like that before and I’d really like to never have that again.

I have to say that overall the chemo experience has been very manageable.  The side effects aren’t fun, but they really aren’t as bad as I thought they would be.  I have my down days and I get fatigued easily, but I can still function rather well.  Especially now since they’ve got my pain under control and I don’t need to take as many pain meds, I’m able to drive and get out to do stuff.  When I first started I thought it would be like you see in the movies, throwing up all the time and wasting away in bed.  I’m glad they’ve made the advances in chemo so it’s not like that anymore.  It seems that I’ll even get to keep my hair!  How cool is that?

Anniversary Weekend

Our wedding anniversary is May 29th.
-For those of you unsure…  We are not legally married but we had a wedding ceremony at our church and wonderful reception afterwards sharing the day with family and friends.  Of course one of the best days of my life.  I will post pictures as soon as I figure out how to link the album.

The weekend we were married that day fell during Memorial Day Weekend.  We decided for our anniversaries, we would pick a place in driving distance to stay for Memorial Weekend.  Last year we went to Santa Barbara.  This year we picked Solvang, CA.  It’s about 30 minutes north of Santa Barbara.  Very cute little Danish town.

It was a wonderful getaway.  A weekend we both needed.
Traveling is a bit more involved now for me though, and that was a little depressing.  I was still on IV antibiotics that I had to hook up to every 6 hours.  Had to bring the IV pole with us which seemed really weird.  I also need to take breaks quite often.  We walked around and shopped for about an hour and I was really worn out.  We had to stop for an early lunch even.  It’s frustrating because my brain is ready to go and forgets that there’s anything wrong.  So when my body doesn’t keep up it gets me down a bit.
Overall though, this weekend was a great time and got me out of my funk a bit.
I needed that.