Reading is a Gift

I’ve been reading a couple of books on coping with cancer and the feelings, fears and things that go with it.  The first one was “Hope in the Face of Cancer:  A Survival Guide for the Journey You Did Not Choose.”  This was a useful book, but more suited to the newly diagnosed, than someone 14 months into it.  But from that book, I found another, “The Human Side of Cancer:  Living With Hope, Coping with Uncertainty.”

While the first was loaded with religious (and totally Christian) content, I still found it useful in that I could take the intent and remove the, for me, invalid references.  So, despite the fact that years ago, I would have flung the book away in a snit, today, I had the wherewithal to actually see the meaning behind the words of Christendom.

This second book, which I am now reading, is written by a Psychiatric Oncologist, who understands that you have to treat the entire person, not just the body.  We all have fears, and stressors, and we can’t be upbeat 24 hours a day.  There are times you just wonder how the hell you got here, how is this now your life???

In 2003 when I was diagnosed with breast cancer, it was in such an early stage that I sailed to recovery, and I’ve been breast cancer free since then.  But here, I seem to get new tumors every time we do a scan.  Is it disheartening.. oh heck yes!   But I don’t want spend my time lamenting my fate.  I want to read, listen to music, paint, draw, play World of Warcraft, and Diablo III, if it comes out while I still live.  

I guess there is no more place of bliss than normalcy, whatever that might be for each of us.  I’d love to get back to normalcy, but now, THIS pseudo-life IS my normalcy.  It sucks, but you deal, and you cling to what gives you pleasure.  I write.  It helps me make some sense of some of this, and when it doesn’t, at least it gives me an outlet to vent.  And hopefully, I can make someone else’s journey through this morass a little easier.

Love and hugs to all.

Count is now at FOUR brain Tumors

Today I had my first radiation on my thigh, and it went swimmingly.

The sims for the brain radiation did not progress so well.  I hated the hot wet thingy over my face; freaked me out.  And it will be placed on my face for every brain radiation.  I got a script for Ativan.

Dr. Ono, my radiation oncologist showed me my MRI and we counted out the four tumors... inoperable and all affecting my motor skills.  Because there are so many tumors, and some of them quite small, we expect that there are more we cannot see yet.  So we will be doing a course of whole brain radiation.  Joy.  But it's only sixteen sessions.  Remember I did 28 lat year on the esophagus.

Sixteen sounds very doable.  We're going to do the leg concurrently, and that's 16 sessions as well.  So it all sounds quite doable, although the whole brain radiation does have substantial risks, mostly with my motor skills.   But I have faith... and I choose hope.

Love and hugs to all.

Cancer bites.

There is a lot of psychological torture involved when dealing with cancer.  Yes, physically it's hideous, but I think the hardest part for me is dealing with the emotional side of it.  I am barely speaking to anyone this morning because I am so afraid of what today's CT will reveal.  I think I'll go hit the Xanax.

"They" say that the first sign of depression is that you don't want to do things that have always given you pleasure.  I'm mostly just sitting here staring at my computer, but I did go kill the Greench in Hilsbrad with my Tauren Druid, so I would say there's no depression on board here... just anxiety.  Oh yeah, anxiety... I have PLENTY of that.

And just what does anxiety do for you?  Well, physically, it makes me want to vomit.  Or have diarrhea, or all of the above.  Peachy, eh?  And I expect it's the anxiety that's making me really wheezy this morning.  I always take my Xopenex inhaler with me for the CT because I always react to the dratted Iodine.  I take one hit pre CT, and then another hit post CT.

So, this morning I am scared.  I hate being scared.  It's so... cowardly. ;)  Can't help it, though.  So much rides on the results of this CT.  DO I have a future?  I think, even if we don't get good news, there should still be some options.  Why do I get like this?  Normally, I can live in the moment, but not on CT day.... nope.  All my coping mechanisms are broken this morning.  I did just take a Xanax, though.  I'll probably take another when I get to Ironwood.  I do still despise the donut.

 

Don't let them fool you, there is no smiling tech with you when the scanning starts.  TRICKERY!!!!  They run off to another room, with a wall of lead between you and them.  No, you get the disembodied voice telling you to hold your breath.  Not likely, toots.  Don't have that much breath to hold.  I do my best though, not to move.  I breathe really shallowly.  So far it's worked well enough.  Come on Xanax, do your job.

Anywho, the CT is what's on my agenda for today, then tomorrow it's pre-chemo lab work, and then Thursday... may or may not be chemo, depending on the results of the CT... I do NOT want another phone call today with the words:  "I have good news and I have bad news, which do you want first?"

Keep warm, love and hugs to all. :)

Chemo Day

There are lots of repeat customers here today.  One of them is the very loquatious gentleman from two weeks ago.  Jane and I thought his loquatiousness was due to his massive anxiety about his treatment.  Chatting about ANYTHING kept his mind occupied.

Today, our regular area was usurped by snowbirds, so he ended up alone, with noone around him with which to chat.  The occupants on either side of him were fast asleep.  He began to panic; hyperventilating and requiring several of the docs to come and make sure he wasn't experiencing a reaction to his treatment.

He has calmed down, and I think he'll be fine, but he is definitely the kind of person that NEEDS interaction to stave off his fears.  And he is a prime example to teach us the importance of acknowledging our fears, and in the process, taking the power away from those fears.

In fact, he is asleep, and I wonder if one of those doctors popped a sedative in amongst all his meds.

Speaking of meds, Dr. Ramaswamy has scripted me with Percocet and Zofran.  We haven't gotten them filled yet, but we will today.  Dr. Fastenberg wants my next CT scheduled for 27 December.  It will be the normal chest and abdomen, and this time, my left thigh as well.  He wants to rule out ...bone cancer.  I hope he does! ;)

Ok, my main course, Camptosar, is about half way through.  I'm going to end this post.

Hugs to all.

Every Once in a While...

...you have to change things up.  I was feeling more green than dark blue, and so my blog background had to be adjusted. :)


Tomorrow, I'll do my last four Xeloda tablets for this round.  Thank the deities.  Friday, it's time for another CT scan.  To say that I'm already fretting about it is an understatement.  Frankly, I'm terrified.  I have never ... not ONCE ... had good news following a CT.  As Gilda Radner said, 'It's always something!'  I have her book of the same title, describing her journey through ovarian cancer.  I can't read it right now.


I just have to tell myself not to think about it until Friday morning, when I get another exciting frosty shake of barium and the joy of iodine ... checking in at SIX!  And I thought the Eight AM chemo was bad.  HAH! ;)


Pessimistic isn't normally how I view the world, and I am trying hard to visualize a great outcome for this week's scan.  It's not helping that I feel horrible from the week's worth of chemo.  I have always had a hard time being upbeat when I feel crappy.  I'm guessing that's probably true for everyone.  But on the bright side... and of course, there always is one, just sometimes they are harder to find than others...temperatures are coming down in The Valley of the Sun.  YAY!


Also, my very favorite holiday of all time, Halloween, is coming up fast.  It will be bittersweet this year, as Halloween was also my brother Jerry's birthday, and this will be the first one since he died.  But that's what the season is for; to honor your departed loved ones and keep their memories close.


So that brings up a delightful dilemma:  What shall I be this Halloween?  If I do get clearance to return to work in mid October, Halloween falls on a Monday, which would be the PERFECT day to wear a costume to work.  Hmmm, it would have to be something that would go well with my scooter.  Maybe I could get Nancy to mount my broom to my scooter... oh man, now I really want to go to work on Halloween!


There.  I feel better already.  You just have to keep in mind all the great things in your life, and you can get through anything.  This is also why I have this blog, so that I can work through the silly fears and get back to having a life.


Be well, all!

Infusion Time Again

I've had three different rounds of chemotherapy; the first in November-December of 2010, then another beginning in May of 2011, and now this one.  I had no problems getting myself in to Ironwood for every infusion in each round.  It just had to be done, and so I did it.


Why, then, is THIS round causing me so much anxiety?  Seriously, the day of my infusion, I have to take a Xanax or go bonkers.  Maybe it IS time to see a therapist.


And maybe I just am so scared of that Aranesp, it's the real cause of my anxiety.  So, I told Dr. F that I was really leery of that shot, and he talked it out with me, told me some interesting facts, and generally allayed my fears about it.  I can't remember what I said, but he smiled, and told me that he found me charming and that he really liked me. :)  Well, of course, I adore him, because he pulls no punches, he's direct, and he understands that I have a brain and treats me accordingly.  (That, people, is a rare gift in doctors, but thank gods all my doctors have that gift.)


Oh yeah, and speaking of Xanax, they called in another bottle of it for me.  It's a crutch, yeah, and I don't frankly care.  I'm not going to become addicted to it, and if I do, well, such is life... I'm not going to be around forever.


Yep, definitely having some issues today.  And of course, I get to start up the Xeloda tablets with my dinner tonight.  Yum. :P

And here is the aforementioned PINK version of my favorite fedora.  If you notice, I have a pin on my blouse....my oncology nurse uses it to pin up my IV line, so that when I wander, as I tend to do because I get bored, it won't pull, or get caught on my IV pole.


Well, I'm getting hungry, believe it or not, so, I guess it's time to think about dinner.


Love to all, and don't worry about me, the weird funk will pass as it always does. :)

A Purple Fedora

I first wore the purple fedora to Tuesday's meeting with the oncologist, thinking I'd be having my regular round of chemo.  Since it's summer, I don't wear the hats indoors, but I have to shield my pale noggin from the summer sun, or fry.


Everyone seems to love this hat, and that includes me.  Nancy found it for me in the Walmart clearance rack, I think.  No matter from whence it came, it suits me to a T.  Even more importantly, it makes me smile.  I feel better when I wear this particular hat.


I had a call from The Apothecary Shop today.  My Xeloda pills will be delivered tomorrow.  It's both exciting and scary news.  You know how I fret about new treatments.  You'd think I'd be an old pro at this cancer stuff by now.  Still, when I had to sign several papers on Tuesday to acknowledge that the shot they gave me to build up my red blood cells could also kill me, well, you know, it's hard to be blase. ;)  But hey, I've taken another black box medication twice a day for probably ten years, and I'm still kicking.  


Also, the fact that I still care about not dying is a really good sign!  I mean if I felt depressed or just terribly sick and unable to see ahead to something good, then I wouldn't have cared about signing those papers.  So yeah, I cared, and that's MOST excellent. :D


Because I haven't been outside of my house except to go see a doctor or get poisoned, for a few months, I'm planning an outing.  No, nothing exciting; just a trip to Sprouts.  We're charging up the scooter even as I type.  I'm thinking we can go some time Saturday morning.  HEY!  I'll wear my purple fedora!  I think this is probably the best shot I have at getting out and not getting sick.  SO, beware Sprouts!


And that's it for this post.  We had left-overs for dinner... including of course, ...squash!  Hugs and love to all!

Only 1 1/2 hours of chemo today!

Apparently Herceptin doesn't make you nauseated, because all I got today was a bag of Benadryl and the Herceptin... no anti-nausea, and THANK THE GODS, no Decadron, and no Pepcid.  So, it was a very quick chemo session.

Oh, and today was definitely NOT social chemo day.  Everyone was quiet, but actually, it wasn't as crowded as it has been.  I'd say not more than half the chairs were taken.  Most folks were sleeping.  I have NEVER been able to sleep during chemo, myself.  Of course, everyone is getting different stuff, so it's hard to say how anyone will react.

There was a woman there today who was TERRIFIED of every little thing that was happening to her.  Remember how I got that port implanted in my chest so that my chemo goes directly into it, instead of them having to find a vein every week?  Well, she had the same model as mine.  What scared her was when the oncology nurse accessed it, and didn't get any blood back following the initial flush of fluid into it.  Well, I haven't had any blood flowback in weeks, and mine is fine.  The oncology nurses know it's working because you can taste and smell whatever it is they use to do the initial flush.

So, I dragged my drip holding contraption over to where she was and told her that it's NOTHING to worry about; that I havent had blood flowback in weeks, and I'm fine.  I actually saw her get tears in her eyes, she was so relieved.  I just wish there was a way to take all that fear from people; it's not healthy.

Anyway, I know I used to post to the blog a couple of times during my chemo, but this went by so quickly today, I didn't have any time. :)

I don't have to go ANYWHERE tomorrow... no doctors, no labs, no chemo and no radiation... YAY!  Dr. Fastenberg says he wants my body to start recovering from the chemos I've already had.  Let's just see how Saturday and Sunday go, my historically worst days.  I don't think Herceptin is really like the other two meds.  And to tell you the truth, I haven't read anything about it.  I'm just at the point that I'm not going start scaring myself by reading the 72 possible side effects... que sera, sera, baby.

Love to all!

Holy Guacamole! She's back!

ACK!  I don’t know if this is the Queen of Neuroses that has taken over my body, but holy crap, I’m suddenly so nervous!  Oh, sure I write a good party-line about how I’m ‘strong like bull.’  Currently, I feel ‘weak like slug!’

First, let me apologize to all slugs.  I’m guessing you’re not really weak, but I could not come up with anything else at the spur of the moment.  What I am really trying to do is calm down.  I don’t even want to think of what my heart rate is right now.  Oh boy, when they take my blood pressure today, they’ll probably gasp.

I’ve got my nervous cough going, too.  Stupid asthma.  Wow, nerves are making me less than erudite, although it’s still pretty good to come up with a word like erudite.  Anyway, I have to remember that I don’t have to do any of this.  I choose to do this.  I want to live a few more years at least.  I CHOOSE TO DO THIS!  This is my decision, not mandated by the government or peer pressure or gods only know what else.

Ok, let me go take a shower and get dressed, and I’m sure I’ll start feeling more in control. 

Gifts

As soon as my sister left the area, I cried in the nurse's arms, and BOY did I cry.  I told her I didn't think I could do it again.  You see, I had breast cancer and got through that pretty darned well, but it's not easy.

Now, I'm a few years older, and my lungs are a bit worse for wear, and I just felt defeated.  But of course, the news was still raw and I hadn't had a chance to digest it.  All I felt was just the depths of fear that can choke the life out of you.  But Jane, my sister, was coming back, so I had to stop crying and put on my coping face.

Most of Friday I worked on trying to keep the fear from making me insane.  Normally, I would have gone and researched this diagnosis, but I wouldn't go near the healthcare sites.  I was way too afraid they would tell me I could kiss my tookus goodbye.  Besides, until the biopsy results show up, it's all just speculation.  Do I need to make myself feel worse than I already do by reading things that will scare me until I cower under my sheet in abject misery?  Well, no.  I have Ally to kill.. but that's another story.

Saturday was a long day.  I had gone to bed really early on Friday, so I was awake at six-ish, and made coffee.  I then spent most of Saturday wondering how everything I ate or drank was making its way past the huge alien in my chest.  Oooh, that's not a good place to go:  Aliens... chest... John Hurt... but I digress.

The worst part of Saturday was being aware of swallowing.  I mean HYPER aware.  I'm a very severe asthmatic, and I have had problems with anxiety most of my life, but I have mostly been able to work on my breathing rhythms to keep the major panic attacks at bay.  But if there is one thing this alien HAS done, it's made me not so aware of my breathing. 

I'm an analyst; business/finance analyst, and I rely on data, I obsess about data.  So, when it comes to health, I have to have data.  I measure my lungs usually once a day, and pop the findings into a massive spreadsheet that goes back to 2004 when things started to really get bad lung-wise.  I haven't blown into my peak flow meter in days.  And really, I think I'm about par for where I have been of late.  Crappy. 

But this morning, Sunday, I woke to an insanely bright day.  There was a beautiful breeze which lured me outside, and there I found my hibiscus blooming crazily and I thought, wow, what a gift this day is!  And voila!  My appreciation was back.  That's what keeps me going; appreciation. 

Such as, my baby sister, Wendy, who calls me every single day and never fails to help me keep my perspective from tilting.  And my sisters that came to live with me several years ago, when our mom's health was failing and my lungs were crapping out.  Jane's out there making me beef barley soup and the scent is warm and loving and frankly quite yummy.  And today, the outlook on life is just somehow brighter and tomorrow I'll go to work, and be all normal, and when the biopsy data comes and we decide what we have to do, I'll do it.  It'll probably all suck, but I'll do it, because eventually, my appreciation will return and I'll find all these wonderful gifts once again.