Helvellyn

I knew when I got my port-a-cath removed last August that I wanted to do something special with it–I just wasn’t sure what.  I had loads of suggestions, but it wasn’t until M suggested we hike our way up Helvellyn over the Easter holiday that the plan coalesced in my head.  I would climb Helvellyn and bury my port at the summit.

Mind you, I’ve never actually climbed a mountain before, so let’s all imagine my shock (and awe) at how incredibly difficult this climb was for me.  Difficult–and completely terrifying–and oh hey, can you SEE the metaphor forming?  I mean, seriously, I had a little metaphor-shaped cloud hanging over me from around the 400 meter mark and beyond.  I mean, seriously.  Incredibly difficult on a physical level?  Check.  Painful?  Check.  Mortal fear?  Check.  Icy cold wind making my face numb?  Well, okay.  That bit was new.  😉

We hiked, we climbed–and once or twice, I scooted on my butt because I couldn’t figure out any other way to get from one rock to another–but, we made it to the summit, and I buried my port inside a cairn just north of the summit marker.

There are cairns all over Helvellyn.  All the way up and back down again.  It’s tradition for climbers to toss another rock on the cairns as they go by.   I think it’s a way of saying “I was here.”

It may come back.  It may be the thing that gets me in the end.  That is the reality we all live with.  But, now–here and now–I feel stronger and less afraid than ever.

I was here.

Me. Sitting on the cairn that now encases my chemo port. If you're ever at the summit--toss a rock on and think of me, will you?

There are more shots on my Facebook page, if you want a peek.

The Tale of the Phantom Port

I noticed yesterday in the shower that I was still very carefully washing my neck and upper chest, so as not to touch the (skeeevy) chemo port that is no longer there.  Old habits die hard, don’t they?

It’s still a shock to me when I look at pictures of myself now and there isn’t a hard little round disc sticking out of my chest and I still occasionally feel a bit of a phantom pull in my throat where the port met my jugular vein.  I expect this will all fade eventually–I mean, I finally learned where my breasts are located on my body–for the longest time after my first surgery, I found myself trying to wash under breasts that were no longer there.  (Seriously.  It was super annoying.)  It stands to reason I’ll figure out my neck is OKAY TO TOUCH AGAIN eventually.

Why yes, I did make myself a shirt. Iron-on transfers, ftw!

Right now, the only real obstacle I face in the shower is shaving my right armpit–because the underside of my arm is numb (and will remain so–this is something that won’t go away since they removed all my lymph nodes on that side) and I haven’t gotten around to getting an electric razor yet, so cutting myself without realizing it remains a possibility.  I never realized how much one shaves just by feel.  The pressure of the razor against your skin is how you tell you’re doing it right and I can’t feel that anymore.  Frustrating, but not end-of-the-world stuff, so I can deal.

I’ve been pretty lucky so far with my arm.  Working out doesn’t bother it (I’m being very careful not to overdo it, as I know it’s a bit risky–but, I think the benefits outweigh the risks.  It cannot do me anything but good to build up the muscle in my arms.) and I’m hopeless when it comes to remembering not to carry my purse on my right shoulder, but it hasn’t affected anything.   I haven’t had to deal with any swelling or other signs of Lymphedema yet.  I have full range of motion with the arm as well.   Dr. Awesome (my surgeon) was unsurprised at my progress.  “You’re young, you’re healthy, there’s no reason you shouldn’t do well.”.

I’m going to just take a moment and enjoy those  words.  Cause I really love it when my doctors talk about how ‘young’ I am.

Tomorrow is the very last day of the Boobie-thon, and I am just completely overwhelmed with gratitude over how generous people have been.  I’ve talked about ‘moments of grace‘ here before, and I want you all to know I’ve had more of those moments this week than I can count.  I feel like I keep repeating myself over and over, but it’s all I know to say or do.  Thank you.  Thank you.  ❤  One day, I’ll pay all of this forward.

This is the very last Boobie-thon ever, which is such a bittersweet thing to all of the women who’ve been involved over the years–but I think especially to Robyn, the founder, and Mel, who took over organizing the thon for Robyn a few years back, and I’m sure for my Hot Internet Wife, Statia, who was the reason the whole thing began.   These women have worked tirelessly for a cause they really believe in and I think they’re amazing.  There are a few really fun contests (win a Kindle Fire or a $30 Amazon card!)  running over there right now, and you still have time to enter, so head over if you like.  Now, shoo!

Running with scissors and eating all the paste

My blue period.

I’m just….gah. I’m restless today and tired and a little stabby and I think I need a nap and a time out because I’m not playing very well with others at the moment. I’m like an unruly kindergartener. I need a red and blue mat to nap on. And a coloring book. And my woobie. (I think CS4 is the adult equivalent of a coloring book, so I’ve been processing shots this morning to keep my mind occupied–it’s working so far. yay!)

I’m not sleeping again, and I keep saying that I’m going to get my Ambein prescription refilled (I’ve been out since March-ish), and I never do. I just try to slog through the non-sleeping periods and hope they’ll go away eventually (they do) because the last thing I wanted to walk away from cancer with is an addiction to Ambien. However, this one doesn’t seem to be going away as easily–it may be the one that breaks me and sends me back. Too many things on my mind. bah. October is coming up fast, though–and if I can hang on til then, I think I’ll be able to breathe.

Our dryer died this week (because that’s how life is rolling these days), so we decided in the interim to hang a clothesline outside as a new dryer is not happening for me right now. We bought it Saturday. Or Sunday. I can’t remember, but either way, it’s rained every day since, so I currently have clothing hanging in every doorway of the house. Classy!!

My PET scan has been delayed and rescheduled three times now–the camera keeps going down, so they have to get it repaired, and it’s kind of making me nuts. The next scheduled scan is for Monday at noon, and I’m hoping this one will work out–this no caffeine, high protein, low carb deal the day before is giving me these weird Atkins Diet flashbacks. I think I have Atkins PTSD.  Just knowing I can’t have carbs makes me extraordinarily anxious. I need my grapes in the AM people. NEED. And, yeah, there’s the need to get this done and over with. I need to get these results so I can stop thinking about the What If’s. Knowing a thing intellectually is easy–it’s the knowing it emotionally that gets me every time.

So, hopefully there will be a PET scan on Monday, and then I’ll see my onc on Tuesday. I’m going to push to get the port taken out this month. I’m ready. I’m done. It needs to go. Oh Port! You were the best frenemy I ever had. I can’t wait to drop your ass to the bottom of the English Channel, all Heart of the Ocean style.

That’s going to be a very good day.  So, you know..there’s bad stuff all over here, but there are also silver linings, and I do try to keep my eyes on those.   I’m better at it some days than others, but aren’t we all?

I want to name this post “Winning!”, but I think Charlie Sheen has ruined that particular phrase for all of us.

EDITED TO ADD:  You can totally buy the print above at my Cafepress Store!

I actually hesitate to write this post while I’m still all giddy and high off endorphins, but hey, why not–it’s my blog, amiright?  😉  I had my very last radiation treatment this afternoon!  I’m done!  I’m done!  *dances the dance of being done*  I just so completely blown away that it’s over (and a bit incredulous, because–really?  It’s over?  How did that happen?).  I feel all invincible today, you know?  When I was walking out, the oncology nurse gave me a little pin that said “survivor” on it, and it made me cry a little.  It feels a bit like a cheat…like I shouldn’t wear it until my five years are up and I get my official ‘pronouncement’ of suvivorship, but you know–I DID survive.  I will survive.  (Oh wow, I just went all Gloria Gaynor on your asses, didn’t I?)  I’m in the next stage now.  I have to take tamoxifen for the next 5 years, but hey-I take a multitude of vitamins every morning, so I’m not feeling terribly put out by that anymore.  My onc wants to schedule a baseline PET scan for me next month, and then it’s just regular check-ups and keeping an eye on things.  OH!!  And, there is the removal of my Frenemy, The Port.  This baby is coming OUT, people.  Hallelujah.

So, there is a lot to talk about here and I’m just going to jump right in, as I cannot think of a witty segue-way from “YES!!  I AM DONE WITH TREAMENT!!” to “Hey, this is what a radiation rash looks like.”

I feel like I should have painted my nails before I showed you my rash. I also feel weird that I just showed you my rash.

I had zero fatigue with radiation, which is a very good thing.  And, I had no real effects from it until this past week when the rash sprang up.  It’s not painful, really–but, it DOES itch like madness.  I’m putting benadryl cream on it, and it helps a bit.  My skin is also a bit tender and pink–like a slight sunburn at the radiation spot.  It’s kind of funny to note that it is actually in a perfect little square section of my right breast.  When I saw the Dr last week, she pronounced my red, rashy skin to be “exactly what we like to see at this stage”.   She said it shows them that the radiation was actually doing its job and that I will continue to get pinker over the next week and a half, but then it will probably clear up just as quickly as it showed up.  (and seriously–this rash?  Popped up overnight–it was crazy.)  So, there you have it, Dear Frantic Googler.  That’s a radiation rash you see over to the  side of this post.   You can also see why they were at first concerned about my port getting in the way–and I really wish that I had pushed this issue–this is probably the most uncomfortable thing I have going right now–the skin over my PORT is itchy and sore and I have to put cream on it, which means I have to TOUCH MY PORT.  So, I’m both uncomfortably itchy AND skeeved out.  It just doesn’t feel fair at all.

Life is rarely fair, but it can be good.  Oh yes.  It can.

1 down, 7 to go

I need to write about this or I’ll forget–I’m already hazy on the detail of my treatment yesterday.   I don’t think it’s chemo-brain setting in, because I usually can’t remember what I had for lunch.  The memory has never been stellar.  😉

Dr S. said the treatment would last around two hours–all told, I was in the clinic 3 solid hours.  That’s a fair chunk, but not nearly as much as I was expecting, so yay.

Before I left the house, I used the numbing cream they gave me.   I put a dab on my finger–about half of what I’d use on my toothbrush if it had been toothpaste–then, I smeared it on all around my port (I forgot to get pictures–I’ll do that next time.  Oh future frantic googler, I am trying to get as many pictures here as I can, because fear of the unknown is the pits.).  I did not rub it in–it didn’t seem to want to anyhow.   I thought I was doing it wrong–and seriously,  that’s the one thing I did not want to fail at today, because this was my first port access, and I was nervous enough as it was.  Once it was smeared around, I tore off a piece of cling film and stuck it on my skin over the top of it (it’s to keep it from rubbing off on the way to the clinic–not very fancy,  but very effective).

Clearview Cancer Institute is full of amazing, caring people.  Some are survivors themselves–and getting to know them has been such a pleasure.  So, there’s always greetings and smiles and jokes at the door when I arrive (and everyone loved my new hairdo, so that was fun).  New hair, you say?  Well, honestly, why not at this point, eh? (all credit to M for the color choice–Smart British Boy!)

New 'do!

I had to get my blood pressure taken/weight (down 1lb!  eek.)/etc, but the momentous bit was getting blood drawn because they used my port.  OH MY GOD I LOVE MY PORT.  I LOVE IT.  Once day, I will write a sonnet to my port, and I will call it “Ode to My Port’.  There was no pain–I felt a tiny little…pinch?  sting?  No, not that bad.   A twinge, maybe.   That was it.  No needles in my arm, no tears.  Wanna see my port all ready for use?  OF COURSE YOU DO.  That’s why M took a picture of it.  I really need to paint little hearts and flowers all around it to let it know how much I love it and how sorry I am I ever doubted.  heh.

 

chemo port

 

When it’s not being accessed, my chemo port looks like a little disk under my skin.  When it’s being accessed for use, my chemo port looks like a little yellow butterfly on my chest.  A butterfly with a really long tail.  M and I were trying to figure out how to get a picture of me holding the tip up to my mouth so I could make a silly vampire cannibal joke, but before we got the chance, the nurse came in with my meds and tossed a metric assload of information at me about everything that was about to happen.   And, here’s where it gets a bit fuzzy, because there is so much they give you.  The best thing I remember is how non-scary it was.   They’ve got chairs and recliners all over the room for patients to sit in, blankets if you’re cold–and I had the added bonus of listening to M and A banter back and forth, which made both me and the nurse laugh at how silly boys are.

I don’t know what to call the little “tail” bit of my port-a-cath.  Hang on, I’ll go find out–oh hell, no I won’t–I’ll just get a better picture next time, because I like calling it the tail (OF THE BUTTERFLY–what?).  So, the tail has those little fiddly bits on the end for hooking up IV’s or shooting directly from a syringe.  I was surprised that a great deal of my meds were giving to me via a timed injection with the syringe, rather than through an IV.  I was given antibiotics and saline and a steriod and nausea meds and the two biggies, Cytoxan  and Adriamycin (looked like a huge syringe of red kool-aid, heh).  The saline injections were weird, because I immediately smelled and tasted them.  They didn’t smell of salt water, though–it was more medicinal.  No pleasant by any means, but not bad. It was, all in all–pretty pleasant.  Nothing hurt, nothing was overwhelming, I had M next to me holding my hand for the majority of it, A spent his time entertaining pretty much anyone who was there to listen.  I have such amazing men in my life.  I hope they both know how much I appreciate them.

The nurse warned me that Cytoxan can turn your urine red or orange–which is a good thing, because the first time I used the toilet after my injection, there may have been a bit of panic.

All in all, the first treatment is really, really easy.  In a scary way, because now I’m all “ooo..that was okay, I can do this.”, and I know that the effects will eventually catch up with me, and there will be moments in which I think “Oh, hey.  I can’t do this.”–but I will.  And I will hopefully be stronger for the experience.  I know I will be back in the happy little low-risk-of recurrence demographic, and that alone will make all of this worth it.