Saturday, May 08, 2010

True friends, tough information

Today began with my learning something along the lines of the fact that the pain in my lower back was indeed a number of tumors, I have some swelling around my spine that causes concern and there was an odd spot on my brain stem that they hope to look at with another MRI. They ordered that test this morning, and my nurse says to brace/prepare myself for an after-midnight pickup. If I'm Lucky, it will be around 5. If not....

As a result, I ended up speaking with a couple of radiologists and specialists in a number of blood-related cancer specialities, and it seems that what's next in the way of treatment for me.

Then, Sky, Karen, Joan and Val showed up, and I should have known that this meant Business. They wanted to talk to me about an e-mail exchange one of them had had with my primary oncologist that extracted some details I haven't heard but needed to. This, people, is why having several people to advocate for you a such a fabulous idea.

Even when the news is not good.

Seems that the problem I had with my left lung is extraordinarily rare (affecting about 1% of patients) and indicates a very fast-growing, high disease burden. How fast? My left lung could already be filled up again since being drained on Wednesday. It also means that it would be a miracle indeed if I could get my disease load down low enough to qualify for any kind of transplant.

This was backed up by yesterday's MRI, which showed a lot of tumors in a place that had appeared to be "clean" just a couple of months ago. My body did feel as though it took a turn for the worse this week, too--had a moment just a week or two before Linda died when a little voice in my head said, "You are pushing yourself to the brink--careful you don't go too far"). Somehow was able to work through that time, but it doesn't look good for me know.

Oh, well. With the future we may have before us (Tea Party-approved Congress comes to mind), this might not be a bad time to head to Rock 'n Roll Heaven. Of course, I still hope that the docs find some way to rein in my disease, and I'll have time to enjoy life for a good while, Sarah Palin or no Sarah Palin.

We shall see, dear people, we shall see. Monday's my next meeting with my big doc, and Karen and Sky will be here to advocate (lucky for me).

Yes, even though the latest news qualifies as terrible, "What's next?" is still a serious topic of conversation. There appears to be more interest in a completely different chemo regimen, most of it more traditional chemo that could knock the stuffing out of enough speedy S.O.B.s to improve my quality of life. So, there's a chance of some reprieve, but realistically, nothing like the extended remission that seemed so possible before we learned what kind of myeloma I had. Seems that continued treatment will be my ticket to time, nothing else.

I've cried quite a bit about this news today, as you can imagine. Was very grateful I had Val, Joan, Sky and Karen to cry in front of (even if I can't help be embarrassed by it). It took courage for them all to sit down and tell me this news, but they knew I wasn't getting it from my primary docs, and it was important. What friends, eh?

Am grateful too that the reality of the situation did not inspire any "wishful" thinking on the part of my friends, but instead inspired a lot of love, support, and hugs.

Prayers and well wishes are also coming in from outside Boston, so I'm being well taken care of on many fronts.

Love and hope abound, even if a little snark finds its way in here and there. XO, An

19 comments:

Delvis said...

praying for a miracle.

kdorkian said...

Ann, Oh how I cried but have set the crying aside and said a rosary for you. I do believe in miracles and want you to know that you are being wrapped with love this day. Rebecca Weber

claudia said...

Oh dear and damn.
blessings and prayers,
Claudia

PJ said...

Peg and I read this together...again and again. I can't even tell you how this makes us feel.

I am numb....will try again later....

Pj

paula from the D said...

Hang Tough Ann. Keep that whimsical spirit of yours alive. Keep praying too.

Anne Pratt said...

Very tough information, indeed. I suppose in a way it's better to learn it from your friends than from an oncologist. I'm so glad they were all with you.

We the faithful Bombshell walkers, measuring out Vitamin C powder at regular intervals, are holding you in our thoughts and in our hearts.

Much love, Anne

Jo said...

Ann...we love you...and since we're including Chloe in this love bundle, I'll amend that and say that we love you fiercely, or in Chlo's words: "we love Ann Pogoslkeeee." Jo, Ann, Chlo and Isaiah

Trevor said...

Ann Podolske- You are just SO loved!

dan orluskew said...

I have been thinking of you so much on this Mother's Day, and how God/Goddess - mother of us all, is cradling you right now Ann. You are indeed very loved.
Dawn

anne said...

Before your latest post, I had for the first time looked at the links on your blog and was struck by the kindness, love & humor that defines your life. I LOVED the Lessons from Linus page. "Just because the vet says it doesn't make it so", and "Love heals" are two of my favorites. Thank you for continuing to share your journey. We continue to pray & light votives for you & the Bombshell.

Sita said...

Dear Ann,
When it comes down to it, what else is more important than "love, support, and hugs"? I am so glad your friends are with you, being honest with you.
You are in my heart very much, my friend.
I will be coming for a visit, soon.

A big hug to you. With love, Sita

PFSpencer said...

Oh Ann.

Everyone in your HCC family is holding you in our hearts and prayers.

love,

Paula and Richard

annh said...

you are lovedlovedloved...
thinking of you and sending positive (infinitely positive) vibes

Sita said...

Ann,
I just discovered this at the tail end of a friend's email. I thought it appropriate here. Hope you do too.
love, Sita

Progress

And once again the depths of my life rush onward,
as if they were moving in wider channels now.
Things are becoming more close to me
and all images more thoroughly looked upon.
I feel more comfortable with that which is nameless,
With my senses, as with birds, I reach up
into the windy heavens out of the oak,
and in those pools broken off from the day,
my feeling, as if standing on fishes, descends.

Rilke

Anonymous said...

Ann,

We are saying prayers, wagging tails, waving binkies and generally holding you in our hearts. Parker is even on a bathing strike until you get some good news - actually, that's because she's two but we'll pretend it's for more profound reasons. Much love to you - and we will continue to give Schwea the love she deserves as well.

Love,

Dale, Hannah, Parker, Rowan, Ezra, Ellis and a few other assorted beings

amesaims said...

Dear Ann,

I Googled you several years back and having found your blog, was reminded of your wonderful sense of humor (aka, snark) and touched by your devotion to Linda and affection for the Blond Bombshell.

I am so glad you are surrounded, supported and loved by such wonderful friends -- you deserve nothing less.

Please know that you are in my thoughts and prayers and I, too, am hoping for a miracle of the highest order.

Much love,

Amy Layman Buskirk
amybuskirk@gmail.com

Anonymous said...

Ann...

Chris and I both feel compelled to let you know that while we may not know you well...we love you fiercely.
Heck, we'll even sign Jacob and Lucas up for the bathing boycott (no, wait...BAD idea) but short of that...we'll do anything!
Chris, Myanna, Jacob and Lucas

PJ said...

Ann... I visit several times a day for an update. I hope the lack of one simply means life to moving forward for you and you are being taken care of. I feel your fear and wish I could do something...anything...to help.
I am angry...and I don't mind admitting it. This damn disease takes so much from so many people and it doesn't seem to make a difference if they have given everything they possibly can already.
Sorry if this message is not as positive and it could be...I am simply not feeling positive. I am angry.

Pj...

Marcia Tompkins said...

Ann -

When we both are next on one of our spiritual retreats (you know, the ones where we play cut throat poker in the evenings), boy, am I going to back you in poker - you are due for one heck of a winning streak. Now you're even more in my thoughts & prayers. Here's hoping that you get home soon with Ms. Shwea.

xo
Marcia