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.

Remission -- No, NOT Me.

Wikipedia says that remission is defined as: “the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity.”

The Queen of Neuroses would have a field day if my doctor said I was in remission. That dread of waiting for the other shoe to fall, oh yes, the Queen would be in her element.

But I do know people in remission that have been that way for several, blessedly normal years. On the other hand some people who have gone into remission have seen a return of their cancer, but in a more pernicious form. And they soon die. One such was Andy Whitfield. Suffering from Non-Hodgkin Lymphoma, he completed his regimen of treatments, and was pronounced in remission. He was to return to work on “Spartacus: Blood and Sand.”

His remission lasted mere months, and when his cancer returned, it was more aggressive and more lethal. An oncologist, not related to his case, said that there are times when you can have a PET scan (the current gold standard for finding pesky cancer cells) and it finds nothing. Yet a single cell can remain, and that cell has the chance to adapt; it’s already survived what was thrown at it from chemo and/or radiation.

And when the time is right, it divides and conquers; stronger, more aggressive than ever, and driven to survive. So, Andy Whitfield died of his cancer, just 39 years old, in simply beautiful physical condition, and apparently good health. But that one cell had gotten away, and it did its job. (And remember, that’s just the theory of an oncologist non-related to Andy Whitfield’s actual case.)

On the one hand, I would love to hear the words that I am in remission, yet on the other, it’s somehow heartening to continue my treatments, knowing that I’m doing something active to defeat these little bastard cells. Because really, I would hate to give the Queen of Neuroses any ammunition whatsoever.

Oh, and Christopher Hitchens, rest in eternal peace.  You touched so many, in ways you can't even imagine.

Yes, it's Chemo Week

I've not been feeling great, so I haven't had anything exciting to post. :)  I've got a couple more days on the prednisone for the asthma exacerbation, and I looked at my hands today and saw the hands of an 80 year old.  Prednisone just beats the crap out of my skin.  My hands look withered.  Of course, the side effects of the Xeloda are contributing to that, as well.  Oh well, my chances to become a famous hand model are now dimmer than ever. :D

Had another great blood draw yesterday from Joyce at Sonora Quest labs.  There is not a shoddy phlebotomist in the place.  They are fantastic!  I go to the one on Brown Road just west of Country Club.  It's close to my house... relatively speaking.

It's really cooling off here in the desert; highs are only in the low 80's and the overnight lows are down-right chilly in the 50's!  Saturday's projected high is supposed to be 64!  Holy guacamole!  But hey, that's what long sleeved shirts are for, eh?  Jane and Nancy will be happy to play soccer in the cooler weather, that's for sure.

Nothing new to report, though.  Leg is back to being painful and making it hard to get out of bed, so Nancy rigged up a support device to help me with that.  Works wonders. :)  I'm using a cane to get around the house, as sometimes the stupid leg doesn't want to support me.  How rude, when I've been supporting IT for years.  Alas.  And being on blood thinners, the last thing you want to do is fall.

Take care, all.  Keep warm. :)

Good Bye, Steve Jobs... rest well

I think when you have cancer, you feel an empathetic connection to everyone else that is battling the evil crap.  And when one of us dies, it hurts us all.  We understand that some of us won't win the war, no matter what, and I think we feel diminished in some way when any of us succumb.

Yesterday was not my normal Tuesday for chemo, it should have been last week, but I was in hospital, so it was a totally different crowd.  But crowd it was not.  There were lots of empty chairs.  Jane was disconcerted because of the about 20 people there getting their infusions, I was the only one that had someone with me.  It's rare to see that.  But, I surely understand that when you are sitting around having toxic stuff dripped into your chest, it's not the most exciting of ways to pass the time.

Jane either reads, or does the jigsaw puzzle of the day, or we just jabber.

I went out and picked one of my hibiscus.  I would, if I had more hair, have worn it, but I forgot how HUGE my blooms are.  It's bigger than my head!

Here is a shot of it on a tea towel.  We tried to just take it on the quartz counter top, but it's pretty much the same color, so it needed a bit of contrast.

I love flowers.  They brighten up the world so much!  Oh, please note, I was wearing a long-sleeved T-shirt today.  It was only like 84!  You know, kind of chilly to us. ;)  And as you can see, the hair is coming back... slowly and very, very straight.  Ai carumba!

Oh, Polly, if you read this, Jane brewed up some of the lovely tea you brought me back from England.  It's fantastic!  Nicely full-bodied.  Gotta love the British and their tea.  I could probably substitute coffee willingly for this.... well, maybe not, but it would be close. :D

Ok, love and hugs to all!

Quiet Day

The Apothecary Shop delivered another batch of Xeloda pills today.  Excitement plus. :P  Oh don't mind me, I'm not feeling great so my attitude is less than stellar today.  Cancer and its treatments really do force you on a rollercoaster of emotional responses.  I never did like rollercoasters, though. :D

The temporary crown the dentist put on a while back came off today, but they were not open, so I'll have to wait until Monday to call them.  Meanwhile, I shall do my best to ignore what feels like a gaping abyss on the right side of my mouth.

I can't actually get it really worked on while I am on the chemo, so I guess it'll be another temp.  I wonder if there's a temp that's a bit more substantial?  Oh well, no worries; it'll get fixed in some manner.

Oh, but Jane and Nancy found me some really great paint brushes and I'm working on that tryptych again.  It's not bad.  I may hang it in my bedroom.

Don't have too much to say in this post; I'm tired, weak, dizzy sometimes, .. you know, it's the usual for my week ON chemo.  I'm sleeping like a champion, though, can't quibble about that.  My glucose is doing incredibly well.  Dammit, if I wasn't dying of cancer, I'd be in pretty good shape! :D

Seriously, though... I'm not often serious.  Don't forget to take most of my posts with a shaker of salt.  Oh, and I love salt.  And that's another thing.  I have the best blood pressure!  I tells ya, I'm fit as a fiddle, except for one thing, the bane of my existence, cancer.  Ai chihuahua.

Well, hugs and love to all.  I must drink more water.

Infusing

Lots of very social and loud chemo patients here today.  Unfortunately, when people can't hear well, or live with someone that doesn't hear well, they tend to speak very VERY loudly.  They are giving me a headache.


Cancer has definitely given me patience.  Either that, or I am secretly lamenting my lack of a concealed weapon.  Just kidding, mostly.


I'll post more later.  I'm off to find a weapon.

---------

Now that I am home, where life is much quieter and more relaxing, and  because there were no weapons to be found, damn the luck, I can continue. :D


I had a new oncology nurse today, and I liked her quite a bit, but I couldn't read her name on her badge, although it started with a C.  She had a little trouble accessing my port.  Somehow, I think it says something about me, that I didn't mind the pain of the miss, as much as I minded the very loud, very obnoxious senior citizens.  Hmmmm.


And besides, what is another bruise?  I have the black hand of death thing going on from yesterday's visit with the phlebotamist.  Third stick was the charm, though, as usual.  


Oh how I hate Atropine.  But I think I probably should appreciate it for the reason it is given.  It's just that it makes me dizzy, screws with my ability to focus, and makes me irritable.  Thus my reaction to the decibel-blasting geriatric set.


So, I have to start my chemo pills (Xeloda) again, with dinner.  I have heard reports of people saying my blog has been about food quite a bit recently, but if you follow the pattern, that's only on my chemo off week.  Yeah, once I get my appetite back, I do tend to enjoy food again.  But for now, my chemo week ON, I tolerate it.  Gotta have something in my stomach to cushion the blow of the pills, but I do not actually enjoy it this week.  You should see how my weight fluctuates between the two weeks! :D


Have a great week, all.  Love, hugs and kisses!

Well, Poo

I didn't get my infusion of Herceptin today.  It seems Dr. F only got to look at my PET Scan results today.  The mass on my adrenal gland has doubled in size since February.  Not a good thing, that.  


There was a bit of good news in the mix, though.  One of the lymph nodes in my chest has resolved and is no longer an issue.  However, now there is one behind my airway that is involved.  The main 'evil tumor' is just in limbo at the moment, neither growing nor shrinking.  


Tuesday I begin another round of good old toxic chemo.  I'll be taking taxotere and my herceptin will continue.  I'll lose my hair again, which is no loss; I've despaired of it since it grew back anyway. 


I have a call in to work and I'm waiting for them to call me back.  Dr. F thinks I can work around this.  That's good news, actually.  He would not hesitate to tell me if he thought I should stop working.


And, now, may I say that I am VERY disappointed in Pac Man.  That unreliable bastard.  :)


I'm going to go outside and look at my 'farmland' and smell my verbena, and gaze lovingly at my petunias.

Breathing is SO GOOD!

Despite still having a cough, my breathing has improved tremendously!  Oh yes, I know it's due to the steroids, and I do appreciate them.  


Frankly, a lot of my feeling good is that I have stopped being obsessed about getting that PET scan done NOW!  When I was a child, probably it was the fourth or fifth grade, Mom had a meeting with my teacher, I think it was Sister Sharon.  (12 years of Catholic School, lots of nuns!)


Sister Sharon told my mom that if she had one complaint about my behavior it was that I was 'overly conscientious.'  What does that even mean?  I thought it meant that I had an overactive sense of feeling guilty for everything!  If the class got punished for something, I was sure I must have had something to do with it.  I felt guilty for everything wrong everywhere.


But I got over that, as you do, in the process of growing up.  Yet, there still lingers this maybe overblown sense of responsibility.  The onc says I need to get a PET scan ASAP, and I try to do it, but my body chemistry is all askew, and I cannot.  Now, I have to do EVERYTHING in my power to fix what, in reality, I can't fix by myself, to GET THAT SCAN!


So, I need to relax; get back to that "I'm living in the moment" happy place I normally reside.  And if there is one doctor that understands this about me, it's Dr. Ramaswamy, my PCP.  He's got me down to one glucose prick in the morning, and we adjust my meds from there.  And guess what?  I was STELLAR this morning.  I had stopped obsessing about those four pricks a day as demanded by the PET scan person.  I had stopped worrying about every morsel that passed between my lips, trying to judge protein intake vs fiber vs carbs... I was literally going nuts trying to make sense of my body.  


And of course, right now, there is no sense in what my body is doing.  I'm on STEROIDS!  I have a lethal form of CANCER!  I knew that, but I still wanted to do everything right; be that perfect Catholic School girl, straight A's and guilty as hell.


Now, I hope I'm back on track, just me again, no weird childhood baggage.  That baggage just waits until you're in a weakened state, emotionally, and then it grabs on and clings to you like a fabric softener sheet.  (I hate those things, btw.)


And on that note, I think I'm going to go play World of Warcraft and just have a fun day.

This is Arugula, a worgen warlock... essentially, a werewolf on a horse with flaming hooves.  Cool. :)


Live long and prosper, all.  Until next time.

Chemo... the new Social

Today I chatted with a 27-year old, going to school, doing his chemo.  Man, cancer sucks.

Hey, I'm looking like a chipmunk, thanks to the steroids. 

I took two pictures, but the other one points out the lovely dark circles under my eyes.  I may look like I have mange, but darnit, no one needs to see my dark circles. :D

Anywho, it's after 1PM, now and I've done the Taxol and I'm on the Carboplatin.  Next week, I get a break.  My white cell counts are down.  And my lungs are having a hard time getting air out.  So, we're going to start fresh again with chemo on December 2nd.

I'll guess that next week we're only going to do radiation Monday through Wednesday.  I i'll be having a CT with contrast on 11/30.

Oh, Jane watched a kindly soul here fax the leave paperwork to Aetna.  And I have the originals, so maybe I'll fax 'em from my house, too.  Cover the bases.  Ewww. baseball reference. :P

Dr. Fastenberg says we'll probably, if I respond well to it, do the Herceptin for the duration.  That means, as long as I'm still alive.  I told him about the lady I met last week, who'd been doing it weekly for six years.  He said,"well, she has breast cancer, whole other situation."  I didn't get a real positive vibe from that very statement.  Maybe that was why I cried.  But I'm good, now... back to happy.  Can't keep this woman down for long!

Love to all!