Friday, March 16, 2012

Thank You and I Love You


I’m having my sister post this.  It will be the last entry into the blog.  I’m gone, now, but what a wonderful time I had!  Oh sure, the last bits were not much fun, but the great life I have had certainly counted for much more in the scheme of things.

To my family:  No other people could have loved me, nor taken care of me with such grace of spirit, nor such generosity and consideration.  I know it was hard on you; lots of times, harder on you than me.  I can’t say don’t grieve, because that’s a normal part of the process of dealing with loss, but as soon as you can, start to laugh.  Call Polly.  She’ll make you laugh, and she’ll need to laugh as well.  I want you to remember that I loved to laugh and I loved to smile, so do your best. J

I do not have to tell you how much I loved and will continue to love each of you.  I hope I showed you this as I lived.

To my friends:  The support and love you all gave me through this most challenging of journeys was astounding.  You know, Facebook was a good thing; I got to make sure that the people I cared about were kept in the loop… a crappy loop, to be sure, but a loop nonetheless.  Some days, your words of encouragement were all that was between me and abysmal despair.  Your positivity fueled mine and just knowing you were there for me and knowing how much you were rooting for me; well, that strengthened my resolve to keep fighting. 

But the fight is over, and as we all must, I have gone on to continue the journey.  Where the journey progresses is anyone’s guess, but one thing of which I have continued to be certain, there is nothing about which to be afraid.

Special thanks to all the people at Arizona Family Hospice; I felt such love and caring from each of you as you made my transition fearless and mostly painless. J

Dr. Fastenberg, my medical oncologist, thank you for always being up-front about everything. You are one of the rare breed of caring oncologists, and I adore you.
Dr. Ramaswamy, you treated me with compassion, intelligence and great humor; and you know I love humor.  Best of all, both you and Dr. Fastenberg treated me as a fully-fledged, intelligent member of the team, and for that I love you both.

And as I have exhorted you all in the past, when you love someone let them know; when you find someone to be charming, let them know; when someone does something that makes you happy, tell them.  Share love, share happiness, share peace.

Thursday, March 1, 2012

Shoulder mets?

Last night my shoulder began to hurt....and read hurt as painful enough to make me cry.  Nancy applied one of those moist heat  things from the microwave.   Oh that helped a ton.

I took some morphine and tried to sleep, but thtat didn't quite work so well.  Now I wonder if the bone mets have gotten to my shoulder, gods forbid.

Monday, February 27, 2012

Monday, February 20, 2012

Journey to death

I am sitting here on my La-Z_Boy recliner, and may I say it is THE most comfortable sitting surface I own.  If you want to see it, it's a Carlyle recliner.  It was pricey, but oh so worth every penney.

Anywho, I have lots of time to think these days.  My hospice nurse would love to see me take a trip, but it's so problematic hauling all themedical equipment around.  And I'm just talking for the lung disease, never mind the cancer.  And then I think why lug it all around?  If you are really ready to die, do you need it?  Well that's a damned fine question. I don't think it behooves me to HASTEN my death, and besides, the point of this blog now is to describe the the facets of experience in light of a waning life.

I don't want to fear it and I don't want my readers to fear it.  It's such a natural progression on our journey' and everyone we have ever loved, encountered, and been annoyed by has taken it.  And I can't imagine that any deity or deities that had a hand in our creation would simply abandon us at this end point.

Perhaps I just think this to give myself comfort, but I have seen those that wait for me, and they tell me I have time yet.  Maybe it won't be the most pleasant of times going forward, but I WILL be going forward!

LOVE, HUGS, AND BLESSINGS TO ALL.

Friday, February 17, 2012

TIME TO CONFESS

I must confess to nurse Betty later today, that I am getting dizzy again.  I would have to bet it's caused by growth in the brain tumors.  And, there is now pain when I try to eat, although the strawberry ice cream was no problem.

I hate confessing to any kind of pain because I know they will want me to take some kind of pain killer, and they all mske me sick.  Oh well, though, I do still want to be able to eat, too.

Should be an interesting day ;)  Love and hugs to all!

Tuesday, February 14, 2012

My Funny Valentine

It's little Tyra, a rescue Toy Poodle/Chihuahua.  Not to worry, my sisters will love her when I am gone.

We were both rather tired.

Far Too Sleepy

Today I feel like I did when I came home from the hospital; weak and very tired.  I don't know if I just overdid it too much last week when I was feeling great.

I do have a bit of a sore throat, but Nurse Betty took a look and said it was red, but fine.  My labs were great from last week, too.  So why do I feel like I could sleep forever?  Oh well, back to the walker and that's not such  bad thing.  I guess I'll just go back up there to my La-Z-Boy and doze some more.

Love and hugs to all!

Saturday, February 11, 2012

Sprout's Sunday

Okay, today I am going to take my first foray outside of my house since I entered hospice.  I was trying to decide what kind of goodies to get, and then realized I won't be having a paycheck for at least 4 more weeks.

So, that's rather narrowed my selection a bit. :)

But, I do want to get a big hunk of fresh ginger to make some tea; nothing better to settle one's stomach.

I had a lovely visit from my friend, V. Corrigan.  She wrote in the memory book that Linda, my hospice social worker had made for me.  It's got a beautiful cover of parrots, and three marmalade cats.

Strangely, I spent most of today dozing...I just could not stay awake for long.  Oh well, I guess I needed it .

And speaking of sleep, I guess I'll get some more in, now.

Love and hugs to you all!

Wednesday, February 8, 2012

Pizza Cravings

I know that the fact that I can still eat is almost miraculous.  The main esophageal tumor takes up 60% of my ...um...esophagus. :)  But holy moley, I get these cravings for things I haven't had in years, or for things I normally don't care.

However, Jane brought home a cowboy pizza from Papa Murphy's yesterday, and it was spectacular.  It's the kind of place where they make it, but you have to bring it home and cook it.  Yum.

I had a letter from Banner Baywood asking me how much I enjoyed the care I received during my last hospitalization.  I'll be calling in my report soon.  I'm still so angry with them, and yet there were definitely staff there that went out of their way to make up for what happened with the two original murderous loons.  Should be an interesting conversation. :)

I posted a picture on my Facebook page of the very sweet surprise my Hospice Nurse Betty brought me yesterday.  It was a wig!!  I have no hair again, which is fine, really, but we had talked about wigs although I never thought to actually GET one.  Well, Betty got it for me, and I am thrilled with it.  The hair is straight, which is odd to me, since my real hair was massively curly, but it's still a cute wig.  Makes me want more, but that would be very wasteful, and with my upcoming retirement and the expense of COBRA, I can't afford to be frivolous. :P

But the wheels of retirement planning are finally moving right along, so hopefully, we'll be there soon.

And now, love and hugs to all!


Saturday, February 4, 2012

Happy Saturday!

And I am indeed pretty darned happy.  With the valium on board, the vertigo is almost a thing of the past.  Not sure how that works, but I'm good with it!  My friend, Jon, says valium is the only thing that took care of his vertigo, so I guess it's getting more use in that area.  It's just so LOVELY not to feel dizzy every time you move.

I had a visit from the Hospice Chaplain today.  First time he'd ever had a pagan client, and he was intrigued.  He was very respectful and we generally had a good discussion.  I'm happy to hear pretty much every person's view on spirituality, as long as it doesn't involve burning me at the stake. :D

The Boeing retirement package came, finally, so I guess I'll sit down and with the help of Jane, probably, get that all ironed out tomorrow.  You know, there's so much to decide!  But gotta get cracking if I'm to get 'er done for a March 1 retirement date.

John Alfonso got my taxes done for me; the man's a saint.  I just was afraid my little tumor riddled brain would screw something up, and I KNOW John won't. :)

My hospice nurse says I should be up for a trip to like a grocery store or something.  I'd love to go to Trader Joe's, but I don't think it could handle my scooter.  Wide aisles are not present at my local TJ's down at Gilbert and Baseline.  But I could go to Sprouts.  I love that place anyway.  Good, local produce, yummy goodies, etc.  What's not to love?  Maybe NEXT weekend. :)

So, anywho, I'm feeling pretty good, which makes me happy, and I'm once again just living for today.

Love and hugs to all!

Wednesday, February 1, 2012

Arizona Family Hospice

That's my hospice.  They are relatively new, but I really like the people with whom I have dealt so far.

Today I met my goal of getting to the bathroom by myself, thanks to my 3-wheeled walker.  Later, I fired up the electric wheelchair and went outside to get the mail!  It's these little victories that help keep the smile on my face.  My sisters Nancy and Cathy built me a curved ramp to get me out the front door.  It works like a charm!  Sadly my house has LOTS of step-downs ... one step only, but a hinderance all the same.

I had a visit from the hospice doctor yesterday.  He just said, essentially, to do whatever I want. So, I had two chocolate chip cookies today.  I felt so decadent. :)

The amazing care and empathy of this hospice's staff truly impresses me greatly.

Now off to bed I go.  HugsAnd kisses to all.

Sunday, January 29, 2012

Retirement?

I would never have retired at 53, but it looks like I have no choice.  Thankfully, I just hit 35 years with Boeing so qualifying for said retirement is no problemo.

I shall call in tomorrow to get the ball rolling.  I guess I should work on disability at the same time.

My appetite is back with a vengeance, and I think, while I can still eat, I should take the bull by the horns and eat what I darned well please.


I did eat a whole , albeit small, bowl of chicken tortilla soup.


Time for bed.  Love and hugs to all!

Saturday, January 28, 2012

eating

i can smell chicken tortilla soup!  Jane,my sister, has been cooking...yay.  My friend, Annette, came by, bearing fine company ...i love her...and Dunkin Donuts.:)

But i was good and had greek yogurt for breakfast.

Thursday, January 26, 2012

getting stronger

now that i have been sprung from a banner facility, where religious prosecutions are alive and well, i seem to be gettong much stronger.   of course, now i am being taken care of by people that love me :)

Wednesday, January 25, 2012

still here

sorry it has been a while since my last post.

Things have been hopping on the home front.  my electric wheelchair was delivered today, as well as my hospital bed.

i'm a bit tired and overwhelmed.

and now i need to sleep.

love and hugs to all.

Friday, January 20, 2012

terror at banner baywood

i had just finished saying a prayer for whomever was coming in via helicopter when i decided to say a prayer for me for some strength, and to get rid of this dizziness.  i kind of sang it.  i freaked a couple of people out.  they threatened an exorcism and to just burn the witch.

ok that last part freaked ME out.

so yeah i'm back in the hospital with not a littlte trepidation.

love and hus to all.

Sunday, January 15, 2012

Sumo Legs

the Decadron that I take to keep the brain swelling DOWN, has given me Sumo wrestler legs.  This is actually quite uncomfortable.

Soon it won't be a problem any more because once the radiation does its thing, we can begin a taper off of the decadron and my normal legs will return YAY!

Looking forward to the Golden Globules, if only for Ricky Gervais again.

Tomorrow we return to our daily radiation schedule, brain and thigh zappage at 2:10PM.

Sorry, tired, but love and hugs to all.

Thursday, January 12, 2012

Hospice

I made the decision today to apply to hospice.  My oncolgist says all we can do now is try to give good palliative care, and we're going to go through the course of radiation on the bone cancer, and the radiation on the brain.  This way, I can have a good quality of life with what's left, and not have to go back through the torture of chemo that doesn't work.

I got through the initial brain radiation, and it wasn't of course as bad as my antipation of the terror.  I did come home with waffle marks all over my face from the evil mask they snap onto your head and adhere to the table.  You WILL NOT MOVE!  Jane says they were more like honeycombs.

One of the ladies I always see while waiting for radiaion brought several of us homemade bread.  Mine is blueberry and carrot.  It was still warm, and very fragrant.  And MY was it fabulous.  I grabbed a hunk to eat on the way home.  This is same woman who knitted me a purple hat because I didn't have one.  She's a snowbird from Michigan.  An angel of a woman.

So, my primary care doc, Dr. Ramaswamy is going to get the hospice stuff started.  We will probably wait until both rounds of radiation are finished.  But I can't tell you how relieved and happy I am at making the decision.  I no longer have to go through treatments that ultimately don't work, but torture me in the meantime.  I can concentrate on my job, my family, my friends, my doga and help them undertand that this is the very best decision I can make right now.  And I am happy!

I'll keep you up to date on my progress as we take this journey; I am almost excited to see where we'll go.

Love and hugs to all!

Wednesday, January 11, 2012

Constipation


Now that I have your attention with my indelicate post title, let me explain that cancer patients are universally beset with either constipation or diarrhea.  Dang, I can never spell the D word right!  Thank you spell-check!

Constipation usually is a result of trying not to live in pain.  It seems most painkillers will cause it.  I try to eat a lot of fruit and thanks to some lovely ladies this week who sent me an Edible Arrangement, I had some FANTASTIC fruit to eat.  J  But even lots of fruit doesn’t cut it sometimes.  And thus, it’s on to Phillip’s Milk of Magnesia.  I remember a Gallagher bit about constipation.  He was making fun of the products that promise ‘no cramping’ ‘stool softening’, etc.  Gallagher said that when he is constipated, he wants a BOMB!  Amen brother.

Now, let’s get past that fascinating subject and on to a strange time in the hospital at the New Year.  I had several visitors, amazingly all at the same time.  One of the hospital’s admins came to see me, as well.  She was perturbed because I had no religion listed on my paperwork.  I just find it easier to leave it blank than to have to explain that just because I am pagan, I don’t worship your devil-figure.

So, she just came right out and asked me, and being under the influence of some interesting drugs, I told her, “I’m a pagan.”  You would have thought I told her I was a commie baby eater!  She got pale, started to back from the room, when one of my visitors told her, “But she’s a GOOD one!”  Oh my gosh, I cracked up.  Anyway, we never saw THAT admin person again.

 I’ve always thought that spirituality should be between you and your chosen deities.  You can have a more personal relationship and communication that way.  But I understand the need for a community-based spirituality.  You have like-minded people, willing to support you, and give you comfort in troubling times.  My sister is a Christian Minister, and a more loving woman you will never find.  She writes incredible prayers, and I know how much she loves me.

In the books about coping that I am reading, there is an emphasis on spirituality being a boon to your coping mechanism.  I find it soothing to write prayers.  As a pagan, you are free to express your devotions in the most simple or the most elaborate means.  I like to keep it simple.  Especially since the brain tumors. :D

Love and hugs to all!

Tuesday, January 10, 2012

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.

Monday, January 9, 2012

Oh Bah!

So, there I was... all girded for the brain radiaition.  I had two prayers ready to go, and I'd had my happy pill....and thank the goddess I only took ONE.  Alas, the computer was down.. no brain radiation for me today, just the leg.. and a happy time it was, too!  Oh yes, the happy pills work WONDERFULLY!

But, I did see my PCP, Dr. Ramaswamy who is working frantically on getting my insurance company to fill my prescription for Ondansetron, AKA Phenergan, the best of the anti-nauseas.  I have a couple of Compazine here, also generic, but it doesn't work as well.  My BP was a tad low at 98/65, but that happens with cancer sometimes.  Just have to make sure I'm not bleeding internally somewhere.  I see no signs of that. :)

And I saw Dr. Ono, who is concerned about my skin getting burned due to the high intensity of this 16 round thigh zap.  Well, so far, my skin looks fine.  I had 28 days of zappage on my chest, and though it fried me interiorly, my skin fared well.

Thursday I'll see my Medical Oncologist, Dr. Fastenberg, and I know he'll be wanting to pop me on some hideously toxic chemo regimen.  But hey, I've done it before... ad nauseum... sorry .... and I can do it again.

And there you have it, the exciting life of a cancer-filled woman, trying her damdest to not let it take over her world, but it is... and I will deal with it.

Love and hugs to all. :D

Friday, January 6, 2012

Brain Tumors and Fear


I really thought I’d be much more terrorized by the words Brain Tumors, but I guess since they were there, and I was still alive, that took some of the fear away.  I simply cannot believe the amounts and types of medications I am on.

I have to take anti-seizure meds, now, and the Decadron keeps the swelling at bay.  I can type much better with my left hand, now, although it’s still not up to par. 

I had a really hard time getting to sleep last night because of the leg pain.  Still not quite ready to use those heavy narcotic patches, so I took a Naprosyn, and that helped me at least get to sleep.  But I was awake at six AM, because the pain was back.  But that’s ok… I started working early.

It’s not as easy to work as I had anticipated.  But I definitely can do it.  It’s just I have to be more diligent about proof-reading things before sending them out.  And, double check when I make system changes.  It’s probably for the best, all these safety measures. J

I swear, if I wasn’t due for a radiation treatment today, I would have taken a nap around 1PM.  Oh, and you know something terribly dangerous?  Dunkin Donuts opened a shop just down the street.  I made my poor sisters do a donut run this morning.  Like that’s a healthy meal!  But they surely were good!  Yes, I had two.  Bad, bad, cancer girl!

You should see all the jewelry I am wearing today…. Disco ball earrings and bracelet, and my very favorite ring, rainbow moonstone and onyx.  I have sworn to wear copious amounts of jewelry from now until the end… for what was I waiting?

Wednesday, January 4, 2012

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.

Monday, January 2, 2012

Doing better

I had to stop the Arixtra shots because the TWO brain tumors I have were bleeding in to  my cranium.  This was causing my dizziness and the loss of the use ofo my left hand As you can see by some of these typos, my brain still needs to heal up more.  So because i could nLot do anticoants,
wehad to have A sieve implanted in My inferior vena cava to catch blood clots.  it took 15eractual minutes to complete.

Rumor has it that i my start femur rads tomorrlowAnd so I may be able to go right from here to ironwood.

Anywo thank you to all my visitors tday
jane brought nme to the ER
JUli#1 who brought me a coolhat
Paul Nielsen,ny dear friend that makes happy just being here
Polly Pittman and Julie Challis bearing cards and orchids
Jackie and Alaina who kept JaneHappy bvy bringing coffee
And the lively and lovely Janet, oncology nurse extraordinnaire!




brain tumor

in hospital   can't type  brain tumor

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