Monday, September 21, 2009

Ouch

My neck hurts. No surprise there, I know.

I still feel hopeful. Physically uncomfortable....but hopeful.

Post surgery update

I am home from the hospital, right on schedule; I've already had lunch. (I was craving won ton soup from Lee's - good healthy comfort food.)

The surgery went well. The surgeon removed two nodes from the right side of my neck, and the frozen section did not appear to be cancerous....but as the surgeon quipped, "the tissue is the issue" and only a full pathology will report actual results. The surgeon said that he is cautiously optimistic.

I'm still on pain meds, but doing okay on that front. I feel far from normal, but I don't feel terrible.

Thanks for your continued love and prayers.

Sunday, September 20, 2009

Scared

I have done my chores.

I have cheered Tessa's soccer team.

I have done my best to be positive.

And now I'm scared. So frightened.

Preparing

Yesterday was a trip to the Olympus Spa in Lynnwood with girlfriends to celebrate my 40th birthday. It was, indeed, an incredible celebration....but it was also a good way to prepare for tomorrow.

The spa is not like other spas I've been to. This one is a Korean spa, and uses traditional Korean ideas. It is a series of pools and rooms, all in different temperatures, and with different elements. The areas range from swelteringly hot to freezing cold, with everything in between. The rooms have different elements: jade, mud, charcoal, sand, salt - and these elements are supposed to help with different bodily or emotional cares. It is women only, and women walk around either in a light robe provided by the spa, or are naked in the pools.

I wasn't sure how the naked part would be for me. In addition to concerns about belly fat and cellulite and other "normal" thoughts about my body, I have such a tortured body, with the most obvious part being that I do not have nipples. Would I get stared at? Would I get pulled into conversations about breast cancer and how "my grandma died of breast cancer" and such? Would I be told that if I had just eaten more soy or less soy or something that I wouldn't have gotten cancer in the first place?

None of the above. Though the spa is very open, people maintain a sense of privacy. Anyone who caught my eye gave me a slight smile and looked away. Only one woman saw me and then, perhaps unconsciously, flew her own hands up to her breasts, covering them as if to protect them.

My girlfriends stood by my side, proud and strong. And frankly? With them around, I wouldn't mess with me. I know some amazing, powerful, centered, spiritual, articulate, intelligent women, and I would not mess with them. I felt strength with them by my side.

...and then those thoughts went away, and despite it all, I lost all sense of my body, and just threw myself into it. Many of the rooms are silent, and women softly slip in or tiptoe out, but mostly there is just silence. There is a meditation room, and a room with journals to write in, and a reading room, but most of the other rooms are designed just for laying down.

I warmed my body, cooled my body; I soaked my body, I dried it out. I drank gallons of water and tea. I shared the company of my friends, and watched them let some of their cares and worries drift away. I inhaled ancient herbs, and I read a silly magazine.

But I can't describe any of it. All these words don't come even close. The coccoon of the spa, the power of the women in it, just filled me with peacefulness and centeredness. What an incredible gift.

I got one other unexpected gift, thanks to Jenny, one of the friends I met while teaching at BHS. Jenny went into the super-cold pool - the one I'd dipped my toe into and said, "NO WAY!" because it was so cold - and had such a smile as she did it. I offered her some question like "Are you crazy?" and she explained that the heat followed by the cool felt so soothing. Soothing? How do you get to that? She said that she relied on her childbirth teachings, and went towards the cold instead of shrinking from it, and that she embraced it by breathing deeply. Ohhhh - old lessons that I had forgotten. With this reminder, I inhaled, set feet in the pool, and exhaled. I walked in, still breathing deeply, up to my neck. I submerged myself under the waterfall, my body surrounded by the cold water. It was incredible! It was like summoning my center, reminding myself of my own strength, reminding myself how much control I really did have over my body. I was not a victim, I was a powerhouse. For this reminder, I am deeply, deeply grateful. I don't have to remind anyone reading this how fortunate that reminder is this weekend, as I face what is ahead.

(Yes, I'll go back. Wanna come? And really, set aside your body worries. There are women of every size, shape, age, and color. To me, they were all beautiful - from the gaunt to the round, from young to old, from milky white to ebony black, from smooth to wrinkled. I envied each and every one of them those two circles on their chests - brown or pink, large or small, pronounced or hidden - and thought how beautiful health was.)

So today I will try to take that with me into the coming week. I am less concerned about surgery - although let's face it I'm not looking forward to it - and more about results. I've played out every possible scenerio in my head, including some morbid ones that I won't get into. But I am determined to face my life head on, whatever my life gives me. (Thank you, Lisa Prisco, for teaching me about that.)

I will continue freaking out, but I've got some calm mixed in, too. Today I will do chores like change the sheets, stock some groceries, tidy things up....but really, I think I am prepared for tomorrow's surgery.

Thank you for your continued thoughts, wishes, prayers, white light, karma, and love.

Thursday, September 17, 2009

Picking up the pieces

Tessa fell apart this morning, and I don't blame her. What a week this has been. Today I'm realizing how messy our house is, and how disorganized I am, and how far behind I am. I'm scrambling to get some semblance of order back into my head, and then into our lives.

We will have a quiet evening at home....that ought to help.

Optimism

PollyAnna is showing her face again.

I feel so much more optimistic today, so much more hopeful.

When "Auntie" Carolyn was here, she gave Tessa a horseshoe necklace that Tessa wears almost all the time. Yesterday, Tessa told me that if I wore it, the cancer wouldn't come back, and she put it on me. (sniff, sob - so sweet)

I woke up feeling like the cancer is gone.

I don't believe in magic necklaces, though I do believe in Tessa's own special magic. I just feel better about this whole disaster today than I did before.

Wednesday, September 16, 2009

Quick check in

I met with the neck surgeon, who specializes in neck oncology. I also had a good chat with my oncologist.

If this is breast cancer, it is a very unusual presentation, not at all the norm. Possible, but unusual.

The node on my neck is palpable, subcutaneous. It is the one with the highest amount of uptake (eg greatest risk) and also the most accessible one, so the obvious choice for a biopsy. I am scheduled for surgical biopsy on Monday, checking in at 6:30am, coming home by noon.

The neck surgeon thinks it's 50/50 whether it's malignant or benign. No questions what I am hoping and praying for.

I probably won't have any sort of result for a few days after surgery, though you may be certain I'll be pestering all of my doctors.

On another note....
Thank you to Susan for driving me to my appt and taking notes today.
Thank you to Heather, Natasha, Steve, Sarah, Michele, Tracy (and assorted youngsters) for meeting me for a birthday lunch and making me feel special.
Thank you to my parents for coming over tonight to take the family out to dinner.
Thank you Sarah for making my birthday cake.
Thank you Beth for driving Tessa to school.
Thank you for phone calls, cards, flowers, and gifts. (Wow!)

I am a blessed woman. I'm just greedy, and I want to stick around another 60 years to enjoy those blessings.

xoxox

Carpe diem

Sure, I will start my birthday with a trip to a surgeon to discuss breast cancer and lymphoma possibilities....

But the rest of the day will belong to me.

I am so grateful for my life, my family, my friends.

If I need to fight cancer again, I will do it. I will fight harder than ever. Sure, it's a terrible fight, but the victory is worth it. I am prepared to fight harder than ever before if called to do so.

Or maybe it will be nothing. Wouldn't THAT be a gift?

Today I will celebrate my life with friends and family. And I will take it one day at a time.

Now, off to wake the girl!

Tuesday, September 15, 2009

Medical limbo and birthdays

I have really, really been looking forward to my birthday. Forty is a big milestone for me - for anyone - that seems even bigger given the cancer business.

I was just so sure that this nasty business would be over by now, instead it seems worse than ever.

I am four years, three months, and fifteen days out from my diagnosis. Those are four years, three months, and fifteen days that I am SO grateful for. Every day is precious to me, even the days that suck.

And let's face it, today has sucked.

Tomorrow morning I will meet with a neck surgeon to do a pre-op visit - number eleven, here I come. It will be a day surgery, but general anesthesia. My current understanding is that the surgery will be Monday, and I pray that I will have results soon after.

This is all pretty surreal.

I've done just a little bit of Googling, and it seems like many kinds of lymphoma are highly treatable with long life expectancies. Frankly, it sounds preferable to breast cancer right now, but I very well could regret saying that. "Nothing" sounds best of all, of course.

But back to the surreal part.

I am supposed to be celebrating my birthday, preparing for parties, laughing with friends. Instead, I am wearing the same sweatpants and t-shirt that I wore to my PET and CT scans yesterday, and I'm freaking out. I've been hibernatinig with the TV (and Susan) all day, trying to avoid thinking too much. Friends have sent notes, flowers, and chocolates; Sarah brought lunch.

But it's surreal. I think that I'm reliving my first diagnosis. I can taste the fear - still cold, still metallic. I can start to plan how the next few months will go. Will I be bald at Christmas, or am I just being overly dramatic?

I have lots of questions for my new surgeon tomorrow. Are the nodes in a chain? How big are they?

Tomorrow, aside from the appointment with the surgeon, I will attempt to have a good day. It's Tessa's first soccer practice. My parents are taking Ryan, Tessa, and I to dinner.

Damn, this sucks.

Prayers, Please

Well, my fears are through the roof right now and I'm asking for your thoughts, prayers, white light, karma, love - whatever you have to offer.

Today I got a call from my surgeon to tell me the results of my PET scan. Seven nodes "lit up" - in the breast area and up into my neck. This could be the result of breast cancer, lymphoma, or "nothing." I have an appointment tomorrow at 10:30am (on my 40th birthday!) with a neck surgeon as a pre-op appointment for surgery on Monday to remove node(s). The surgery will be a day-surgery, but under general anesthesia. I'll know more about that tomorrow.

Susan left work to be with me. Sarah is bringing lunch. Beth drove Tessa to school and Katie is picking her up. Heather has provided dinner. Michele has invited us to dinner. I am surrounded by blessings, and I'm grateful.

My friends, I am so, so, so scared. Thank you for your continued good thoughts.

Monday, September 14, 2009

PET scan update

Needles full of radioactive contrast, drinks full of frothy nastiness. Ativan is vying for my affection, but Heather helped to keep me sane. Together they were a good pair.

Now my head is full of fuzziness and I'm trying not to think too much about the next results. At earliest I'll hear tomorrow.

Until then...wait.

Friday, September 11, 2009

Breathe in, breathe out

When I breathe in, I breathe in peace;
When I breathe out, I breathe out love.

So goes one of my favorite UU hymns.

Today I am feeling better than I did yesterday, and that's good, because yesterday I felt horrible. I am finding this round of testing really difficult and overwhelming, but I feel like I'm coming out of that a big fog.

I am hoping that the PET is actually perfect for me. I am hoping that it doesn't show any kind of cancer symptom(s), and that I will not require further testing or surgery.

I'm trying not to think about Monday. I have to fast on Sunday, and Monday I'm only allowed water before the test. I got a prescription for anti-anxiety meds to help me through, and I have a friend to drive me.

One day at a time. Maybe by my birthday (Wednesday) the nightmare will be over and the sun will shine?

Thursday, September 10, 2009

And the answer is...

...I dunno.

They took my blood pressure at the doc - 164/94. Holy smokes. It's "situational" as usually my BP is around 112-120/70-80, but I could FEEL my blood in my veins I was so stressed out. (They were more amused than worried - at normal appts I really am fine.)

We discussed it all. In the end, one more test - a PET scan.
http://www.breastcancer.org/symptoms/testing/types/pet.jsp
Hopefully it will give us a definitive answer. Wouldn't it be great if I could avoid surgery?

I am EXHAUSTED by all of this.

PET is Monday. Fasting prior to the scan....fun fun.

Thanks for caring, everyone.

Trying to remain calm

Now that Tessa is (happily) at school, fear is making itself known. I took Shep for a walk this morning along Alki, and stopped mid-way to meditate along the sea wall. I'm listening to calming music. I am trying very hard to remain calm.

Because without a lot of effort, I feel like I could have a panic attack.

Several lovely and loving friends offered to come with me today to my 3:15 appointment, and at the last minute I did accept Sarah's offer because she can bring her baby with her and doesn't need to take time off work. THANK YOU Heather & Lori for also volunteering.

So I'm just going to keep distracting myself, and try not to throw up.

Please pray that I will make the right decision about surgery (or not), and that I will find peace in that decision. And whatever happens, please pray that the cancer isn't back.

I will update when I have more info.

Wednesday, September 09, 2009

Highs and lows

High:
Today was Tessa's first day of first grade, and it was a smashing success. She loved just about everything about it, from the teacher to the reading nook (filled with stuffed animals) to the new principal to all of her classmates to the activities (self portraits, writers' workshop, story time). Her new teacher is known for being strict, but she is equally known for being warm and kind. This is an exactly what I think Tessa needs, and I believe she'll thrive in this environment.

Lows:
Tomorrow I meet with a surgeon to discuss my swollen lymph nodes and to decide whether it is worth surgically removing them. I am hoping and praying that I walk away tomorrow with a strong sense of the right path, whether that is surgery or not. The uncertainty is torturous. So is surgery, of course, but my fear is that if I leave the nodes in then I will continue with sleeplessness and fear for months. I do not know what I "should" do and I hope that the good doctor will help me to choose the right path.

Tonight I feel sick to my stomach (literally) worrying, and sad because I am not able to just revel in the day's successes. Hopefully by tomorrow night I will feel calmer.

Saturday, September 05, 2009

Raining

At this time of year, I love the rain - the sound of it, and particularly the smell of it. It washes away the accumulated dust of summer and refreshes. It sends me back indoors to cups of steaming tea and good books and soft throw blankets and quiet music and family board games. It feels rich and lush on my skin, and on the dry grass.

But it also feels appropriately gray. I never met Lisa in person, but I am grieving.

I am struggling with my own medical situation, too. Next week I need to decide, with the help of my surgeon, whether to undergo surgery again. I am struggling with the idea that I might have cancer again. I am not sleeping well; I have a hard time falling asleep and then I wake up in the middle of the night and lie there, restless and slightly scared. My sleep is fitful. What is my life bringing me next? Am I strong enough to handle another hit? How can I protect my family from the pain that comes with such a hit? How can I stop from going insane in the process?

I am still praying that it is nothing, of course. But part of the struggle is accepting that this is my path for the rest of my life: there will be tests, and there will be fear, and there will be waiting. Never again will I be normal, never again will I be innocent. My knowledge carries a heavy
price.

Praying that it is nothing.

And trying to live my life fully, and not just crawl into bed for the next week.

I remain very focused on my efforts to cook sustainable, local, seasonal, healthy food. We eat tomatoes with every meal right now; last night I brought bruschetta to my girls' night in potluck with friends; today, I'll make that again or maybe switch up to insalate caprese. Katie gave me more plums, and I'm in the middle of making jam - "real" jam, not the freezer variety - for the first time. (Thanks to Kathleen for giving me her canning stuff.) If it wasn't raining today I'd hoped to pick blackberries for more jam.

Yesterday Tessa and I went downtown with friends to SAM and the water taxi and the Pike Place donut shop (I didn't eat any donuts - yay me).

Today we're having some friends over for an end of summer BBQ....indoors, apparently, because of the rain.

Next week, Tessa begins school. We've got her school supplies (with horse pictures on them) and her backpack (with a horse on it) and her new clothes (mostly with horse motifs).

I'm moving my herbs out of pots and into the ground, so that they will be in the front of the house and have a chance to grow more.

It takes effort to do these fun things, or these chores, because there is a big part of me that wants to curl up in a ball and cry "I'm so scared, I'm so scared."

On Thursday I hope to have the surgery/no surgery decision. Most of all, I hope to find peace.

I'm glad there is church tomorrow.

Thursday, September 03, 2009

Loss

I have mentioned before that someone I "know" on the YSC was dying, and that I struggle with that.

Today, Lisa died.

She was a mentor, a bright light, a wise voice in the darkness. I miss her already.

Sbe shared this song as a favorite, and it speaks to how I'm feeling now.
---------------
Jane Siberry - Calling All Angels lyrics
new CopyProtection();

A man is placed upon the steps,
a baby cries
And high above him
you hear the church bells start to ring.
The heaviness, the heaviness of it settles in,
A mother starts to sing.
Then it's one foot then the other
as you step along the road
Steppin' on the road,
how much weight,
how much weight?
And it's how long
and how far and how many times,
Oh, before it's too late?
Calling all angels,
Calling all angels.
Walk me through this one,
don't leave me alone.
Calling all angels,
Calling all angels.
We're trying,
we're hoping,
but we're not sure how...
Oh and every day you gaze upon the sunset
With such love and intensity.
Why it's almost as if, if you could only crack the code
You'd finally understand what this all means.
Oh but if you could, do you think you would
Have traded all the pain and suffering?
Oh, but then you would've missed the beauty of the light upon this earth
And the sweetness of the leaving.
Calling all angels,
Calling all angels!
Walk me through this one,
don't leave me alone
Calling all angels,
calling all angels,
We're trying, we're hoping
but we're not sure...
Calling all angels (call all angels)
Calling all angels (call all angels)
Walk me through this one
Don't leave me alone.
Calling all angels,
Calling all angels
We're trying,
we're hoping,
we're hurting,
we're loving
We're crying,
we're calling,
But we're not sure how this goes."

Wednesday, September 02, 2009

SIGG bottles and BPA

Check this out:
http://www.sigg.com/news-media/press-releases/press-releases-detail/ceo-letters-about-our-liners

I chose SIGG bottles specifically because I did not believe that they had BPA (a chemical used in some plastic bottles, and can linings, which is a known carcinogen found in high concentration in breast cancer tumors, among other things). Well, this month it has come to light that until August 2008, SIGG liners did indeed contain trace amounts of BPA. Since that time, they have changed, and newer SIGG bottles do not have BPA.

I am pleased that the company has corrected their policy, and that they are offering free bottles as replacements to existing customers. I'm gathering up my bottles and sending them in, and encourage you to do the same. Their website has shipping labels and information about returns, including how to tell if your bottle is the old style with BPA or the new, BPA style. (Hint: if you have a bronze interior on your bottle, it's the old style; if it's a matte finish yellow interior, it's the new style. But check out their website to learn more.)

I'm disappointed that it took a year for SIGG to advertise this information; I have used my Buddha bottle for well over a year, and I probably drank on average two full containers from it each day as my primary source for water. I'd given SIGG bottles as gifts, too, and I've talked up the company on here on my blog as a green alternative to plastic or one use bottles. Still, I am glad that the information is public now, and that the company is willing to take a loss to do what is right to correct the situation by replacing older bottles. The cost of shipping the bottles back is well worth it to me.

Since I left my Buddha bottle at the zoo last week, I need to get it back before I send mine in. I'll update on my response from SIGG after I've sent mine in and (hopefully) received replacements.

Sunday, August 30, 2009

Catching up

I haven't been online as much lately - not really sure why, just not in the mood.

We had a fabulous time at Cannon Beach. Sand castles, coffee, kites, run on the beach (me), bike rides (Ryan), and just those simple pleasures. We love the Surf Sand hotel that we go to.

And, treat of treats - we got to see the Shogrens! We ran into our old friends, and had some wonderful time together.

Now we're home, and doing small things...a BBQ with neighbors (fun), church (nice to be back), Farmer's Market, little house projects. We're eating a lot from our garden - today we harvested a nice basket of pears, and every day we're harvesting tomatoes, especially cherry tomatoes by the hundreds. (Matt's Wild Cherry is VERY prolific, for those who want to know.) Tonight I made pasta (fresh from the market) with zuchinni and crookneck (from Sarah's garden and ours, respectively), tomatoes (garden), basil (market), chantrelles (market), goat and parmesan cheese (TJs) with just a little garlilc, salt, and olive oil. Okay, a dab of butter too, I'll confess. Anyway, it was delicious, and tasted so amazingly fresh - not surprising, given that most of it had been picked that day.

On a more substantive note...
I am still struggling with medical issues. I spoke to my oncologist about my recent test results, and she told me (as I thought) that an FNA (fine needle aspiration) biopsy is not 100% definitive. My lymph nodes are still large, and we don't know why. I am not happy about the wait and see process if there might be cancer growing inside me - either lymphoma or breast cancer could do this. I have an appointment on September 10 to meet with my breast surgeon to discuss options. If she thinks it is advisable to wait, I will wait. If she thinks that I should have surgery to have the entire nodes (one at my sternum, resting on my lung, in the center of my chest; the other two deep in my armpit) removed/biopsied, I will do that. It would be a serious surgery, more scarring, more recovery. It goes without saying, I hope, that I dread the idea, and that I don't want to go under the knife again. Still, I will go with her recommendation because my onc and I are both on the fence about whether it's a good idea.

What a roller coaster. It makes my back tight just thinking about it.

Still, we are enjoying summer's lazy days. Yesterday Katie delivered a basket of plums, and I made two plum cakes for a BBQ, and gave her a basket of tomatoes in return. There is much to be grateful for.

Monday, August 24, 2009

Off to Portland/Cannon Beach

We leave today for vacation - have a good week, everyone.