The Story of the Traveling Leather Lymphadema Gloves

It's been emotionally cloudy lately, with wind gusts, occasional thunder storms, sun breaks and rain. 

It's exhausting.

And keeping my emotional umbrella up feels a bit like fighting off a sadness-cold.  The sadness is minor, benign, nagging and irritating -- and seems to hang on forever.

I get to ring the all-done bell today.  It's a big loud muster bell on the wall for patients to ring when they finish their radiation treatments.  It's a thing, apparently. 

I'm a good sport.  So I push through my emotional congestion, muster some bravado and really pull off a big pealing

{{BONG!!}}

Clears the sinuses a bit, that does!

The cheers and the smiles from the medical staff and patients touring the halls buoy me.

But there is a moment of pure transformation that happens right as I am about to leave.    Emotional Hawaii.

I don't if she's coming from or going to her radiation therapy, but she walks with the slightly shocked look of the-first-time-through.    Her breast cancer diagnosis is advertised by the lymphedema wrap she wears on her arm. 

Oh!  I wore that!  I say.  Hated it.  What a pain, right?

And look at me now!  I show her my muscled, lean arm, completely free of any swelling.

We talked about the bandaging, the wrapping and dealing with the dirty bandages and wraps.

I reminisced about my beautiful leather fingerless gloves, hand-made by a Pike Market artist and purchased for me by my beautiful soul-sister cousin Kerstin.  They are spunky, beautiful, and practical.  With these gloves I was suddenly a hip woman with attitude -- not a survivor or a patient or a victim.

Give me your address!  I'm going to give them to you.

She protests a bit, offers money -- But we realize what we've got here.  We've got a new tradition. 

She agrees to pass the gloves on to someone who needs them when her lymphedema resolves. 

We'll all pay it forward together.

And imagine the stories those gloves will be collecting.

I am so happy. 

Advice from a survivor? Don't spike your cider and then email your oncologist.

Nobody told me this.  It just makes sense that alcohol and liver mets don't make a good mix.  So in general, I don't drink at all any more.

But when I got the news I would be starting Afinitor, I decided to allow myself a bit of wine for one evening.   Afinitor handouts specifically say that alcohol can interfere with its effectiveness.  And, well, it also causes blisters on the inside of your mouth.  Also not a good combo with alcohol.  

So I allowed myself the wine and a self-indulgent maudlin blog post.  A final celebration.

When I got the news that my insurance had denied my oncologist's request to start Afinitor, I decided to take it as an excuse to allow myself another drink-reward -- a bit of carmel apple vodka in my apple-spice tea.

Spiked cider in hand, I settled down to my computer and CHOSE to check my hospital MyChart portal.    I saw a note from Dr. Wahl asking about the Afinitor status.  Cue in long maudlin self-indulgent note to HER, a bunch of "bring-on-the-chemo-I'm-ready-to-fight-harder-please-help-me-see-my-kids-grow-up" blather.

Variable emotional weather, alcohol and computers are a DANGEROUS MIX.

I've been thinking about the work these professionals do at the Swedish Cancer Institute.

We are a bunch of fucked up emotional nutjobs at times.  Understandably so. 

These people aren't just healers.  They are harbors, shielding us from a few of the waves we create with our emotional winds. 

In response to my please-ignore-that-previous-note-I-see-my-therapist-tomorrow-note, Dr. Wahl wrote:
Hard to ignore that. It's a roller coaster, no doubt. Pace yourself Suzy - this is a marathon not a sprint. I know that you can handle chemotherapy if you need it and I have no aversion to prescribing it if I think it's the right thing. But I'm not there yet.
Hang in there.

What a PERFECT response.

On the emotional intelligence scale, this woman is a genius.

Let go.  Trust me.  Hang in there.  Walk the marathon.

And enjoy the scenery.

 

My pain isn't a bad thing. Seriously!

I've have come to realize that my last posts have led many people to believe I am living day by day and moment by moment crippled with pain or the fear of pain.

More evidence that I am *not* writing well on this blog!  

I am almost 100% certain that I am in less pain than probably 99% of other 47-ish adults on this campus.    That is what is so COOL about my treatment team!

I've dipped into some pain, at very specific moments and in very worldview-shifting ways but for very limit time periods.  But now, because of effective treatments, I have a tiny burning skin sensation on my lower back (radiation) and a slightly heavy pressure in my pelvis that reminds me of being pregnant (a good memory for me).  I take no pain killers at all.

But I will TALK about pain here a LOT.  Because it's now such an important mechanism for knowing.

We of the older-than-45 set have learned that age and aches and pains are all just par for the course. It's been a few years since  I've been able to sleep in a tent on the ground without taking some ibuprofen beforehand.

But I am 47-years old and I have times (still now, with this nasty diagnosis) where I am completely pain free.  My body feels well-oiled, balanced, tuned and centered.

When I peek inside of this body with all of these scans, I see healthy bones and joints -- no deterioration and no arthritis.  Based on my scans, if I didn't have cancer, I would be able to run this beautiful  machine for decades without any need for major tune ups.

Most of us, in this certain age, cannot say that!

What this creates for me is a fascination with my pain.  I struggle not to feel happy or healthy or comfortable.   I feel healthy, happy and comfortable.   I struggle to understand -- and then, when things flare briefly, to navigate the rupture to my psyche and emotions.

So when you meet me on campus -- and I look, well, so healthy, happy and comfortable...  It's because I am!

Isn't that amazing?

I totally think it's amazing.

The Swedes would be PROUD

The "Swedish Cancer Institute" (aka SCI) has a warm, inviting waiting room for radiology.  We are a fucked up bunch back there.  One woman has cancer in her brain and tilts when she walks.  She struggles to finish her sentences.  Another woman has an autoimmune disease that has suddenly riddled her 30-something body with tumors, cut her sight and reduced her mobility (she is recovering now and much better).  One woman has ovarian mets wrapping around her bones like vines, squeezing her and causing excruciating pain.

You can find us by following the laughter.

Every single person -- the nurse, the radiology tech, the doctor -- treats each patient with such kindness and concern.  It's a warm blanket of care.  It's a centered, careful, loving attention.

It's so easy to document our complaints.  How do we document the successes?

I'm going to try.

In radiology, the nurse sat with me and, well, she held me.  It wasn't a physical hold.  She held me with her attention and with her focus.  With her stillness and her heart, she explained to me that she felt that any patient who felt he or she shouldn't call for help was *her* failure.  Her job, she explained, was to ensure that every patient knew they can and should call at any moment for any concern.

The radiology techs greeted me with care and consideration.  Each time there was a shift in who would be on duty, they were sure to overlap and introduce me to the next on-duty tech.  When *one time* there was a small glitch with the computer and I had to sit for a few minutes on the radiation bed and wait, the tech was clearly upset -- not because he feared what would happen to him, but because he did not want *me* to suffer any anxiety.  He was so present and careful and caring.

Errors happen.  But what these radiology professionals illustrated was that it's all about caring how the *patient* feels.  It's not about the mistake or computer glitch or whatever.

The Issaquah Swedish Cancer Institute ROCKS.  I am so grateful I did not go anywhere else.

Imaging was good.  But "SCI" is AWESOME.

The patients I connected with in that radiology waiting space were so grateful for the warm space created for them.  Five of them, independently, and unsolicited, talked to me about how they dreaded treatment at first, but that after starting, starting looking forward to it each day.

I don't want the burns and scars that come with prolonged treatment.  But I have to admit that I will miss this women and the community they build back there.

We of the radiology waiting room are survivors.

Thank you, Issaquah Swedish cancer professionals, for supporting us.

Bravo.

In gratitude,
Suzy

Sex

I decided on Friday to just go home and have sex with my husband.   It was great.   It was intimate and loving and sensual and fulfilling.

And on Saturday, 24 hours later, I couldn't walk.

You should all ask yourselves...If tomorrow I were to die, what would I do?  And on Friday, for me, the answer was to make love to my husband.

And then for a week I struggled with radiation and walking and pain...

I am so glad for my choice. 

Then...OK... This might be TMI!! 

Then...my radiologist asked if I have pain in my pubic bone.

I couldn't think of a pain episode.

But then, later, I realized that I feel HOT.    And that same feeling of "hot" caused me to research last summer whether I might have ovarian cancer or not.  I had pain during sex, bloating, and a "hot" feeling in my pelvis...with, what felt like, the pain of ovuluation. 

So now I know.  It's cancer in my hip bones.

But if it makes me feel hot?  Whatever.

That same feeling of "hot"...makes me feel...well, HOT!

Take what you can get, right?

Radiologists are COOL!

So Dr. Mitchell is apparently the father of Ian Mitchell who has been a classmate of my daughter's since Kindergarten!  GETOUTTAHERE!

Dr. Mitchell was the oncologist on call who met with me to talk about radiation.  We spent a lot of time talking about kids, teenagers, high schools, peer pressures.

He was so careful to be PRESENT with me and so intentional about connecting with me.

Radiologists deal with pain.  We went through my PET scan and he would touch the parts of my body with tumors and ask me if the pain was here or below or above.

It was such a CLEAR feeling.  And then we decided to work on just one of the tumors.

And in one week...

I can sleep in ANY position!  (I have been sleeping on my back in yoga shavasana position for a year.)

I can walk up steps!

I can pick things up off the ground!

I can sit...without nerve pain going down my leg!

I can wake up and get into a sitting position without gathering the courage to beforehand...

It's so wonderful to UNDERSTAND my pain ...and to see an approach to combatting pain work.

Thank you Dr. Wahl and Dr. Mitchell

Death

This afternoon I am sad.

I am thinking about the fact that I have a cancer that does not seem to be responsive.  It's too smart.

And I'm thinking about having to leave my daughter, and my son, and my husband.  Within a year?  Two years?  Five, I hope?

And all of you.

I know you will all be fine.  And that is such a consolation for me.

But today, I am angry and sad that I do not get to participate in the futures possible.  I am most angry and sad about not being able to participate in my children's futures.

And I sit in the sadness and I cry and...well, I drink a bit of red wine...  Because the next hormone treatment doesn't not react well with alcohol and chemo makes alcohol taste vile.

So I'm a bit maudlin.

But I'm not afraid of death.  I don't feel a need to control it.

That's not the same as giving up.  I am going to do everything I can to survive.   But I am surviving in order to be with the people I love...and to support them.  I am not surviving in order to avoid death.

But now, twice this week, some people are coming forward with some organization or some recipe or some diet that has AMAZING results with cancer victims.

I want you to know this...I think I can smell the fear of death.  And if you come to me with this fear of death and you tell me your answers, I will not listen to you.  I will be polite and I will respond well, but I can smell you.

I've been to where the fear of death can take you...and that is in itself, death.

If you come to me without a fear of death, with a love for life but an acceptance and openess to death, I will feel that, too.

We are where we are.  I do not judge anyone for where they are.

But I would ask you to ask yourselves...  Are you suggesting a "way out" to me because you have knowledge of a solid, reliable approach and want to share it?  Or are you sharing because you are even a little bit desperate to ward off.... DEATH?

I'm am not afraid of dying.  I love sleep.  I love my family and the idea of being with family or watching family in an afterlife.   And I have dreamt a connection with a being that exudes all flavors of love.     None of these options seem bad, to me.

My loss, is nothing, compared to the loss my children and my spouse and my friends will endure.

I mourn for you all and for myself tonight.

From WHEELCHAIR to Tri-athlete in a WEEK!

On Saturday,  September 20th, I suddenly could no longer walk.  I could stand.  I could shuffle forward in one direction.  But when I wanted to change direction, I had to stand there, gathering my courage, before moving my leg to the side to make the turn.

It hurt that bad.

The idea of going down the stairs in front of our house was so painful that I thought that if I *did* call my doctors' office and they did recommend an xray, I would need to call 911 to get help getting out of the house.

And I also knew this kind of disability, with such a sudden onset (vacuuming!) would trigger a major response from the medical community.

And I didn't need more stress.

So I decided to wait and see.  I felt fine sitting on our MARVELOUS new couch.    I just couldn't move.  If I was not improved in the morning, I would call.

And the next morning, when I could shuffle walk and even change direction with only moderate pain, I decided to ...

GO SWIMMING!

I was still convinced I would need a wheelchair to do the work I'd signed up to do this week, but I thought that maybe a hospital would be able to rent me a wheelchair?  So maybe there would be a positive outcome...

I shuffle walked into Samena.  And GOD, getting my swim suit on was a BITCH.  But I got into the pool and I very gently swam...lap by lap...stroke by stroke...with care and compassion for my body...one mile.

And when I left I could walk.  Slowly.  Carefully.  A bit painfully.  But I could walk.

The SAMENA CURE!

Then I emailed my oncologist and asked whether my reaction was appropriate or not.

Apparently not.  LOL.

I knew this.

She wanted xrays and radiation and all that stuff I knew they'd ask for on Saturday (with the STAIRS in my way).

And I couldn't figure out how to SCHEDULE all of that stuff into this particular week!  I'm BUSY!  Too BUSY for cancer!

But..then I realized that this could provide a BREAK.  I am overwhelmed.  I can barely walk.  I am tired.

I can spend a few hours getting to radiation and back and take it as a BREAK.

So I did.

And now, only five sessions later... I can walk miles, I can swim, I can sleep in ANY position I want (I have been sleeping on my back at LEAST one year to avoid pain!) and I am so grateful.

My oncologist is sad.  I can see that.  She wants my cancer to be the responsive kind.  And I so adore her for her sadness.  What a genuine, present soul.  

But I am so grateful for her.

My request?  Send all of your waves of warm light and prayer and support to Dr. Tanya Wahl.    She reminds me of my social justice activist colleagues...  She works and works and works for a goal that is not clearly achievable in the near future...but she enriches all of our lives while she does so.

I am SO GRATEFUL.

Lovingly,

Suzy

Paul and Sleep and Delphine and Butterflies

It started, probably, about the time we got the news that the cancer was acting like a cancer that had seen years and years of hormone treatment.  It was too intelligent.  Paul wanted me to cuddle with him every night while he fell asleep.

Now, while this feels a bit weird (He IS, after all, 5 foot 3 inches tall, I think!) I loved it.  He is my baby and I do not have much time to cuddle him.  He gets every cuddle he asks for.

But it gets tiring.

Now, Paul is sleeping downstairs on a hide-a-bed, next to our bed.

Francois thinks this is fine.  I also welcome our Petit Paul...But I wonder if this is covering something deeper that might need addressing.

And when he sleeps in our room -- It causes him to go to sleep later -- to get up earlier -- to lose some of the physical balance he will need to deal with this.

We have stuff to share with the therapist.

But Delphine!  She is flowering!  She seems to be coming out.  She wears shorts and t-shirts at times -- even on cooler days.  She is signing up for clubs.  She is asking for appointments with experts who can help her with her goals.  She is doing wonderfully.

Thank you NEWPORT HIGH SCHOOL!  Turns out, the cheerleaders are not the top of the pecking order here.

So I feel so conflicted -- dragging her to therapy.  "I'm FINE!" she says.  And she worries how she'll get her homework done, attend play practice, go to therapy and then make the evening robotics club session.

I think I will make a deal with her.  She gets to skip this-- if she sees the therapist on her own another time.  That might work.

We are all going to need all the support we can get.  I am most aware of this.  I understand what my oncologist is saying to me.  Francois is somewhat aware of this.   Delphine is suppressing everything.  Paul is having nightmares (but doesn't know why).    So they all don't know what is coming.  I know, but I don't *realize* what is coming.

It's time to dig in and slow down a bit.

August for a stage IV survivor

 

 

 

I want to apologize for the hiatus.  It's been almost a month since I posted.  Well, this stage IV survivor has been busy doing....

 

 

 

I have been feeling healthy, fit, engaged, connected and happy.  But while I was living well and my liver function, bone pain and lung function was improving, my tumor markers were doing this (normal = green and Suzy = purple):

 

 

 

So my oncologist ordered a PET scan.  And the PET scan, of course, was going to prove that the tumor markers were just a "FLARE"!  Right?

 

But that didn't work out.  Parts of my body have responded well to treatment.  Other parts, medium.  And a few tumors are growing.  More importantly, there are new tumors growing in my liver.

 

So that easy two shots in the butt scenario for years is not really going to work.  We are going to try a month of another hormone treatment.  But my cancer's reaction really concerns my oncologist, so we are going to only do this a month, and if there is no improvement, it's chemo at Halloween. 

 

BOO!

 

That's not so bad.  I've done chemo.  And this time there are so many effective options that I get to choose my preferred side effects.  I think I look damn fine without hair, so I'm going for the no nausea option. 

 

Maybe the hormonal treatment will work.  But my cancer seems, well, too damn INTELLIGENT.

 

 

How's that for Halloween scary?

 

 

But you know what?  The scary part is definitely there.  But the emotion that overwhelms me today is gratitude for  the genuine sadness and concern in the face of my oncologist.  How can any professional survive and care that much about each patient?  Dr. Tanya Wahl rocks.  And wow.  I worry about her.  As I worry about my colleagues who care that much about each of their students. 

 

Healing is important. 

 

You keep on healing people, Sayumi Irey.

 

Love to you all,

Suzy