Edge of the Cliff

Has it really been that long since a new post?  For the past 2 weeks I have been eating well, resting and getting over an infection.  Yesterday I spent 5 hours at an allergist's office determining that I'm not allergic to penicillan after all.  This is big and good news in case I get an infection when my white cell count falls from chemo.  I'm not planning on needing penicillan, but it's good to know that I can have it if something comes up.

Tomorrow is D day, or I guess I should say C day, as in chemo.

I bought a wig yesterday and I have to say it made me feel rather goofy, like, "Is it Halloween already?"  Mickey thinks it will be good for my self-esteem and maybe he's right, but for now it feels more like an outrageous costume.  And those damn things are expensive, you know?  But he pointed out that they cost less than 3-4 months of hair salon appointments.  I have a feeling the salon will prove to be a vastly more entertaining experience than chemo.

What is it about chemo that makes it more frightening than anything else I've been through?  Possibly it's because it's such a mystery.  No one can tell you how you'll react.  Every individual is supposed to handle it differently.  And no one knows why some people have some side effects and other people have others.  I guess, for me, it's like getting on an airplane and having to trust a faceless pilot with your safety.  Yep, I am afraid of flying.  It's that control thing.  But I get on an airplane because the lure of getting from point A to point B is stronger than my fear.  I have to get through chemo because the idea of manifestly knowing that I'm totally cancer-free is stronger than my fear of barfing for 3 months or anguish at losing (possibly forever) every attribute that makes me feel and/or look pretty.

And let me just say here that it shocks me how vain I am, but there it is.  I actually like having hair on my head for more than just warmth.  And my eyelashes are a family trait that I love to see in my boys, siblings and cousins, and I'm attached to them.  And my eyebrows are from my Great Grandma Ehrmantraut and I hardly ever have to pluck them.  I hope that if the possibility of dropping a few IQ points or losing some of my "heart" or "spirit" were a result of chemo, I would feel as badly.  But I think that as a woman, the idea of being attractive is an ancient pull--hair being your "crowning glory," for example.

I stand on the edge of a cliff.  Everything that went before is at my back and a new "normal" is hidden from my outward view.  And here's where I want to adopt the Chinese idea of "challenge/opportunity" being 2 sides of the same coin.

I have been a member of tut.com for a long time and get "Notes from the Universe" every day.  They're wonderfully positive, particularly if your faith system leans to the "less is more" idea regarding dogma.  Here is one note that I received recently and brings me comfort.

Joan, it's easy.  Your thoughts become things.  Don't fight it.  Don't think there's anything else.  Don't entertain the false premises of fate, luck or a God who judges, withholds, or decides.  You decide.  You manifest.  You rule.  This is why you are here.  This is what you came to discover.  You were born to experience your absolute dominion over every flimsy, malleable illusion of time and space; to have, do, and be anything.

Truthfully, it couldn't be any easier.  All you have to do is think of what you want and refuse to deviate from that thought.  This will, invariably, set you into motion, stir up the magic, and unleash the full force, power, and majesty of a Universe conspiring on your behalf.  It's worth everything you've got, Joan.  Be strong, be vigilant, take action, and the Kingdom of Heaven shall appear at your very feet.

I've got your back,

The Universe

BTW, Joan, Heaven has nothing to do with dying, and everything to do with being born, again, to truth.  Cool?

Thinking positively for for my near future and feeling grateful for my strong, healthy body and the support and love I have received during my recent "opportunity."  I'll let you all know how chemo goes.

Can You Say "Hematoma?"

I'm off today to take Jesse to the orthopedist to find out if his finger is healed enough for him to resume activities.  I hope so--now he and Christian can ride the ski bus to Mt. Spokane for boarding/skiing.  Poor kids.  We canceled their activities until further notice to keep the stress level down on the parents (read, chauffeurs) and they've been pretty bored.  Although Christian has become a yoga fan and Jesse is working out in the Y's weight room.

It seems like the complications from this surgery go on and on and on...  Went in for the ultrasound on Friday.  The radiologist was supposed to make sure there was no hernia and drain the fluid.  Oops.  Not fluid, blood.  It's called a hematoma and it's really fun if you say it with an Arnold Schwartzeneggar accent (kind of like in Kindergarten Cop when he says, "It's not a tumor.")  Then downstairs to the CT scan to make sure I wasn't bleeding anywhere.  They drained 100 cc's of blood (not all of it since the doc was worried that new blood would flow in and I'd end up in the hospital with a transfusion.)  It didn't hurt because most of my nerve endings in my belly are dead--a side effect of surgery, thank God, as I got a look at the needle.  Of course, I lived through 2 amnios, etc.

This weekend my incision became very red and inflamed like I had a sunburn.  It's in a really interesting pattern that Mickey says looks like a drawing of a penis and balls on my belly.  Just what I wanted.  According to Freud anyway.

Heading over to Cancer Care NW, after I get Jess back to school, to see what's up.  On the bright side, today is house cleaning day.  I get a clean house and don't have to do any work.  It's the little things in life, right?

Surgery Blues

I'm heading back to the hospital today for another "procedure."  Isn't there some joke about aging and counting the procedures in your life?  

Since my surgery I've developed something called a seroma.  It's like someone left a 5" diameter rubber ball just under my skin below the bellybutton.  It reminds me of a capenter's level because if I lie on one side it shifts up toward the ceiling, except it's not an air bubble, but fluid-filled.  I'm going into Deaconess today to have an ultrasound to make sure that there's no hernia beneath it and if not, then they're going to drain it.  I believe that includes a needle and I'm not too excited except that I've lived through 2 amnios, so I'm sure I'll live through this.  If there's a hernia, I don't know what will happen.  Possibly more surgery.

We took a chemo class this week to find out all the ins and outs of chemotherapy.  There seem to be no hard and fast rules because every body reacts in an individual way, but low white cell counts and red cell counts seem universal.  Hair loss, too, given the type of drugs I'll have to take.  I asked how long a chemo session lasts because on the video they showed, there was a woman with a little syringe going in her arm.  I'm thinking an hour max.  When I told her what drugs I was getting she said I'd be there 6 hours.  6 hours!  Are you kidding?  Then she said that was just the first time.  After that they could probably get it down to 4 1/2 or 5 hours.  Guess I'll have to bring lots to do.  I wonder if you can get up to go to the bathroom?  Probably, huh?

I feel really good lately.  I'm getting my energy back and except for the rubber ball in my belly, I would really like to start exercising again.  But alas, I'm supposed to wait another 3 weeks except for walking.  Of course, walking here in Spokane is definitely taking your life in your hands, what with all the ice, snow, berms, etc.  I really miss skiing and skating, dancing (of course!) yoga, Pilates, and all the other stuff I took for granted.  I started acupuncture this week to strengthen my immune system.

The weird thing is that I don't feel like I have anything wrong with me.  I have a hard time saying that I'm sick or that I have cancer because deep down, I believe that my cancer was removed with the ovary.  I know it sounds like magical thinking, but I don't believe that I have any cancer left.  I'm looking at chemo like it's an insurance policy, in case there are any stray cells floating around in me.  

But ovarian cancer is a deadly killer because there are no real symptoms.  I never had any.  I went in because I was having endometriosis pain from a cyst on my ovary.  The cancer was a surprise.  I did have a series of horrible nightmares about death and being buried alive prior to my first surgery.  I just thought it was because I am turning 51 this month and that was the age my sister, Janet, was when she was diagnosed with her cancer.  She died when she was 52.  I thought it was psychological, but now I wonder if the body has a wisdom and it was trying desperately to get my attention.

I spoke with a lovely woman in Norfolk, VA a couple of nights ago.  She was given my number by the Cancer Hope Network because she had the same type and stage of ovarian cancer as me.  She had it 14 years ago, so there is long-term survival out there.  Clear cell is kind of rare.  My oncologist only sees 1 or 2 cases of it a year.  So it's good to meet someone who has gone through it all.

I continue to feel so blessed by all of you who are supporting the whole family through this.  We joined a support group for families and I think it'll be good for the boys.  They're looking forward to skiing/boarding when Jesse gets the green light from the orthopedist (next Monday, we hope.)  Then I can put them on the bus to Mt. Spokane and they can get some use out of their equipment this year.  They can use the exercise and the fun.  We had to take them out of their activities like fencing and taekwando because it was too much stress on us to get them to sessions.  It'll be fine.  Spring is coming.

Yes, Joan, There is a Santa Claus!

We had great news called in to us by our nurse, Gina, on Christmas Eve.  All the biopsies for everything they removed were negative for cancer.  Talk about your Christmas miracle!

The surgery was totally exreme, dude.  They ought to make a reality show based on scars alone.  Mine starts about 2 inches above my navel and travels vertically all the way down to the pubic bone.  Say goodbye to the navel ring.  Until 2 days ago my stomach was so swollen on either side of the incision, it looked like I had a butt in front to match the one in back.  And the bruises are pretty vivid.  But still, we have good news and who cares about a few scars.

Since we only talked to the nurse, I'm guessing from what my oncologist told me in the hospital that I'm classified as Stage 1A.  Excellent news.  Because the cancer type is clear cell, a very virulent type of cell, they treat it like it's Stage 3.  So, now I will have to go through 4 rounds of chemo.  The chemo will be searching out any cell that has migrated into another part of the body or wasn't caught by the biopsies.

Apparently the cancer was created by my endometriosis that I've been battling for years.  Endometriosis is fed by estrogen and with my female parts a thing of the past, I now have to lose excess weight.  Fat cells create estrogen and I don't want to feed the endo anything any more.

I am having a little leftover problem.  I began having all this fluid pour out of my va-jay-jay (as Oprah says.)  I will be going in tomorrow to find out the source.  It could be abdominal fluid leaking into the peritoneal cavity or it could be urine going the same route.  Aren't bodies just the weirdest?  If it's urine, I'll either have to wear a catheter and foley bag for 6 weeks so that the hole (possibly created during my surgery in November) can heal, or I'll have to have another "procedure" to fix it up.  If it's other fluid, then it will heal itself.  I'll know more tomorrow.

But today  I'm up and around at least a little bit and enjoying the sunshine we haven't seen around here for weeks.  It's about 35 and a lot of the snow has melted, but more is coming again soon.  I can hear the "glaciers" slide off the roof and crash onto the ground.  We still have so much snow that the city doesn't know what to do with it.  We haven't been able to get garbage pick up for 2 weeks and it looks like it will be another week until we do.  We normally get 36 inches in a season but have amassed 48 inches this month alone.  Just thought you Californians would be interested!

We have been overwhelmed with the kindness shown to us by co-workers, church friends, kid-friends, my dance community and our relatives.  We are truly blessed by your friendship and care.  Thank you so much!  Christian and Jesse said that this was the best Christmas ever.  I have to agree with them!

Home again!

Hi, this is Mickey writing for Joan. She's still unable to sit at the computer, but wanted to update her blog. So she asked if I'd be her "guest host." She told me "anything you write will be fine." Yeah, right. 

Anyway, this past week was Surgery Week, and all in all things went pretty well (I can say that because I wasn't the one getting cut on). The surgery was on Tuesday and went for 4+ hours, and the surgeon was able to remove everything she was after...utereus, appendix, lymph nodes and a bunch of stuff I can't pronounce. Good news.. she did not have to resect the bowel! Recovery is definitely more of a challenge than with the first surgery...five days in the hospital (partially because her hemoglobin level wasn't right, and they couldn't come up with a pain management system that seemed to work for her). She came home last night, and is glad not to be eating hospital jello anymore.

The doctor said she didn't find anything that looked "concerning," so our next step is to wait for the pathologies this week (guess what we're asking Santa for this Christmas?). Then chemo starts sometime next month. 

Another thing that made this whole week a bit surreal was the storm we got slammed with. We got more than 20 inches of snow in one day, and it's still snowing off and on, so the city is pretty much paralyzed. It is certainly beautiful though,...looks like a winter wonderland...at least until you try to drive to the store. I had two feet of snow piled up on my car, and Jesse and Christian got the idea to turn it into a snow sculpture, and shaped it so it looked like a white shark with wheels. Such creative guys. 

Thanks to all of you out there who are following Joan's "adventure," and who have gone out of your way to show us your support and friendship. I would love to give you all a "shout out" of appreciation! 

I'm sure Joan will write more in the next few days. 

Get It While It's Hot

Had some good news on Friday.  Yay!  The biopsy done in the oncologists office came back negative.  

Funny thing, hope.  It can be frighteningly fragile and immensely strong.  The slightest look, shift of the eyes or even unwanted information can slay it in its tracks.  But with the most minute particle of hope, the path widens, smoothes down and the sun comes out.  We spent the whole weekend enjoying the wonderful biopsy news.  And I didn't want to hear about the liver ultrasound and hoped that the doctor wouldn't call (she didn't.)  I just needed this weekend to shop for the boys and see a movie (Milk--terrific) and just breathe.

Everyone has been so wonderful with all the support we are getting.  I feel so blessed to have you all in my life.  The emails and comments are so uplifting.  The spontaneous prayers and hugs are so warm and generous.  The food is delicious and so welcome.  And thank you Sarah (my lovely neighbor) for my new hats.  What a lucky gal I am!

Tonight we take some family photos in front of the tree and then watch SNL Christmas DVD.  Looking forward to laughing.

The Word

Had my first meet and greet with my oncologist yesterday.  Her name is Elizabeth Grosen and she's the only gynecological oncologist in town.  She's very serious and doesn't pull any punches, but I don't think she'll withhold anything from me either.  I hat it when doctors treat you like you're an idiot.   She's also gaga for Weight Watchers.

I will be having another surgery on Tuesday, 12/16.  It sounds like they're going to take everything out from my appendix to my uterus.  I wonder if there'll be a gaping cavern down there for my intestines to slosh around.

After surgery comes the fun stuff.  If everything else, lymph nodes, omentum, etc., is clean then I'll still have to have 3-4 rounds of chemo.  More if other things are positive.

The cancer type is clear cell and it is fairly rare and very virulent.  So, if all the biopsies come back clear, I would normally be considered stage 1 cancer.  But because the type is clear cell, that automatically jumps to stage 3.  It makes me feel like an overachiever.

They found something on my liver from the CT scan and now I need a liver ultrasound tomorrow for further evaluation.

The doctor has recommended genetic testing, particularly to have info for the boys.  I was relieved to hear that it wasn't something I ate, smoked or rolled around in coming back to bite me.  She thinks it's genetics.  Of course I did grow up next to a nuclear power plant.  Hmmm...

The boys are trying to be brave, but Christian cries a lot.  Jesse tries to make jokes and keep things light, but has had one huge blow-up moment.  Mickey is my rock.  It was my lucky day when I met him.

Jesse broke a finger when his hand got slammed in the locker this week.  He has to go to the orthopedist when I'm having surgery.  Dad to the rescue.  Christian is having a speech evaluation this morning while I'm at the urologist.  Dad, again.  Life does go on.

The people at Mickey's work, Quisenberry Marketing & Design, have been so wonderfully supportive.  We had dinner provided every night for more than 2 weeks--everybody took a turn.  Now the kids have to get used to my cooking again.  I'm just sorry that I'm going to miss the Christmas party.

I'm having my hair cut and colored today for the last time for a little while.  When I start chemo I'm going to have it cut short and donate it to Locks of Love.  I think it will be less traumatic to go from short to bald than from long to bald.  Particularly for the shower drain.

Thanks for the good wishes and prayers.  It's powerfully healing!