Waiting for Savasana


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Gone

My birthmother died at the very end of  August.

She died.

It’s been several months and I am still processing this.

I could say it happened quickly but that is not the truth.

She was diagnosed with breast cancer eleven months before me.  We were not really speaking at the time of her diagnosis.  We did not have an easy relationship.  At the point of her first diagnosis, we were about six years into our reunion and half of that time, we were not speaking to each other.  That was just how it was.

We kept trying.  I think we were both hopeless optimists about what we were to each other.  Either that or we were masochists.  But we kept trying.

She was there for me eleven months later during my own diagnosis and treatment.  She showed up.  She cooked.  She helped.  She cared for us.  She took me to appointments.  She showed up for my last chemo and sat with me even though she had flashbacks to her own chemos and really didn’t want to be there.

For 18 months, we did not fight.  We did not disagree.  We just were.  We talked on the phone.  She would visit.  She drove her little Prius up the coast for 8 hour stretches to help me.  I accepted what she could give.  And I got through it.

Spring of 2015, she called me.  She had been struggling with abdominal pain and had visited an er in the winter.  The doctor looked at her scans and told her she was ok.  The doctor was wrong.  Misread scans.  It was ovarian cancer and it had been given some months to spread.

She had another fight.

She did everything she could.  She did all forms of conventional medicine including IP chemo which is just a grisly treatment.  She had a special port placed in her abdomen and her organs were given chemo baths as she was filled with a cocktail that flooded her abdominal cavity.  This was in addition to traditional chemo.  She suffered and she fought with her eye on the prize of living.

After months of chemo, she visited a healer in South America.  She placed my picture in the healing room when she was there and strangely, I felt better.  No really.  I still feel better than I did before she placed my photo in that room.  Can’t make that up.

She continued with naturopaths and massage therapists and acupuncture and…well…everything.  She tried everything.

And for a few months, she had remission.  And then it came back.

She called me to let me know.  We were in the middle of our cross country move.  She was leaving for a clinic in Germany.  We talked for awhile.  I told her I admired her strength and fortitude.  No, I really said that.  God, what an ass I am.

She soldiered on.  I got text updates from her.

Eventually, she returned to the U.S. feeling worse for the trip.  My brother told me later that eventually the German clinic said there was nothing more they could do for her and sent her on her way.

She went into hospice.  By this time, my family and I living in temporary housing in our new state.  I came to see her and my siblings who were caring for her.  She was feisty and stubborn and mad as hell.  And I did not blame her one bit.

Who wants this?  Nobody.  Nobody wants this.

62, man.  62 years old.  She’d been all over the world.  She’d done so many things.  She had just received her master’s degree a week before the breast cancer diagnosis.  Nurse Practitioner.  She had worked so hard.  All she wanted to do was get out there and help people.  Help mothers and babies and families.  She had so much more to do.

She kept getting out of bed.  She didn’t want to be in that bed.  The problem was, she kept falling down.

One morning, she announced she wanted to go to breakfast.  So we went.  My sister and I packed her small children in the minivan.  My brother took her for a walk there in the wheelchair.  We drove past them on the way.  My brother walking along while she sat in the chair. Her eyes closed.  Her face tilted toward the sky a small smile on her lips.  I wished for a camera but I did not want to intrude on the moment.  I never want to intrude.  It was a beautiful exchange between mother and son.  Heartbreaking and palpable and real.

She ordered a BLT.  Took one bite.  Held it in her hands.  I watched her close her eyes again and feel.  I do this too.  We had done it before, together.  It was after my last radiation that she had driven up for.  Me looking and feeling a wreck, bald with a cap, dark circles around my eyes, engulfing my eyes.  Her, healthy, vibrant, strong, and I assumed safe.  We went to my favorite breakfast place in my town.  I always say this place is like eating in Disneyland’s Haunted Mansion.  The decor and waitstaff are similar.  It’s awesome and as a bonus, the food is quite good.  We sat.  Holding our coffees. Feeling and smelling and savoring the warmth of cup in hand.  She told me then that I was opening a new chapter.  She sang the song about the rest being still unwritten.  She laughed.  It was a nice moment.  It’s what I think about when I think of her.

She enjoyed that bite.  We took the other half home.  She never ate it but that was never the point.

Later that day, she awoke from a well deserved nap telling us about her strange dream.  She had dreamt that we had gone to breakfast together.  All of us.  Wasn’t that funny?  And we tried to tell her that we really did but I am not sure she believed us.

I stayed a few days.  Tried to help where I could.  This was my mother and she was going to die and die soon.  I wanted nothing but to be with her.  To help.

It was hard to leave but I had to.  My boys were starting school in our new state.  I had to go.  I didn’t want to.  I hugged her.  I cried.  She cried.  We hugged again.  I told her to listen to her children.  All they wanted was to help her.  We all loved her so much.  But in the next sentence.  I told her to remember that she was the captain of this ship.  And she looked at me and I could hear her thinking “You’re damn right I am.”

Days passed.  Text.  Phone. Skype.  Facetime.  These modern conveniences that help connect us.

And then the final late night text, “She’s gone.”

Gone.

The first time we met.  After I found her.  She got on a plane the very next day to see me.  She called me from the airport.  And I said to her, “Are you really coming to see me?  Are you going to do it?  Aren’t you scared?”  I was scared.  And she paused and said to me, “I’m no chicken.”  And she wasn’t.  She was brave and strong and tough.

I lost her when I was three days old. She was there and then she was gone and I wasn’t supposed to talk about it.  Not ever.  Even though I talked about it anyway.  Everyone told me I was bad for wanting to know the truth about myself.  My whole life.  So I waited…and waited.  I waited to know her name.  Her laugh.  Her voice, that is so much like mine.  I waited to know my chapter one because everyone told me I was disloyal for wanting to know it.  Eventually,  I searched and searched only to discover over three decades later, that she had been looking for me too.  And we met and we loved and we fought and we struggled.  But we always kept trying.  I came from her.  And she did for me what she thought was the best thing she could do under the circumstances.  And people can judge as they often do.  And tell me their unsolicited opinions on all things adoption.  But all I know is that she was my first mother.  And I feel empty again without her.  I feel the ache I felt my whole life and I wonder if it will remain there forever.  I really never thought it would end like this.  We didn’t even get ten years.

I still can’t believe she’s gone.

 

 

 


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Back on the Sauce

So I went back to my sparkly new oncologist and told her the Femera didn’t fly.  Meaning that I lasted one week and it was so awful I had to stop.  And I said that was it and she said that was fine.  Quality of life and all that. But then she told me she had been thinking of me and she wanted to try something out of the box.

What?

Hmm…

SHe suggest that I try Faslodex.  It is another antihormonal but it is usually only used for people who are Stage IV.  It works in a different way than the others I had tried.

But there was one other thing.  It is not a pill.  It’s a monthly shot.

I don’t mind needles.  I haven’t cared about needles in years.  Needles shmeedles.  Bring ’em.

But I have had such bad luck with the pills that amonthly shot concerns me.  Because if a pill makes you feel horrid, you can stop taking it but with a shot, you are screwed for a month.

And then I did some quick research for info about Faslodex and there was a lot of talking of black and blue tushes.  Hip pain.  Swelling.  Not being able to sit down.

Ummm…

My doctor needed to get approval from my insurance which was honestly dubious since I amnot stage IV.  But we made and appointment for me to come back the next week for the first shot.

Then I went for a walk on the Golden Gate Bridge.  It was nice but really noisy.  Traffic is noisy!  And I thought and thought and thought about it.

golden-gate

Yep.  I walked the whole thing both ways, end to end. It was fun.  It’s a stock photo because I could not figure out how to upload my photo.  Blergh.

And I thought about Aromasin.  Aromasin.  I started taking it last June.  It was ok in the beginning but then it started to get rough after about a month.  Joint pain.  Dark thoughts. And then there was the price.  Ugh!

It was all good until our insurance changed and our deductible reset.  The price at the drugstore that starts with a W and ends with JERK was something like $425.  For one month. Yikes.  I stopped taking it in October.  I had some illness that made the aches even worse than what I had been living with and then after I recovered from the illness, I felt so much better that I stopped taking aromasin because I was tired of paying a ton of money to feel awful.

But you know, compared to a shot of Faslodex, Aromasin didn’t seem so bad.

So I decided to retry the Aromasin.  Why not?  And it’s been not so bad so far.  Better than Femara.  Beats a shot in the ass.  So far.

And I found I could get a 3 month supply through mail order pharmacy for $187.  So that’s good.

And the yucky pharmacy people(Rhymes with Mallgreens) I heard they recently got sued for overcharging patients.  Jerks.  They lost my business forever.  I won’t even buy a candybar from that place.

That is where things stand in my treatment.  I am currently being a good girl and taking my medicine.  I do not feel totally horrible.  Not even mildly horrible.  So far.

So far.


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Loss and Recovery and Loss

A woman in my support group died.  Last time I saw her, we were in the same boat.  Done with treatment, told we had no evidence of disease, trying to get on with our lives. Waiting for our hair to grow.  I  eventually stopped going to group. I heard from a friend she had a recurrence locally in her breast and gone through the torture of treatment again. And then I heard it had metastasized. And then I heard she died.

And it hurt to hear it.  Like a punch in the stomach.  I didn’t know her well.  We were acquaintances.  Two members of a club no one cares to be in.But I am sad for her and her family.  Really, I am sad for all of us.

From what I knew of her, she was nice and funny and gentle and kind.  She had a lot of hope.  She, like the rest of us, stared down a life threatening disease and went a couple of Saturdays a month to talk about it.

People say we are brave.  We who have faced cancer.  But is it bravery?  I don’t think so.  It’s just a need for self-preservation.  We endure treatment for whatever reason, our families, our children, or maybe just to see another sun rise and set.  And we sit in a chair and get pumped full of poisonous medicine in the hopes of having a few more days.  And it wasn’t a battle.  It wasn’t a fair fight.  I got my ass kicked people, and kicked hard. And Yes, I believe the definition of bravey is doing things even though you are scared but this was kind of a forced bravery.  Because none of us who face cancer and want to live really have much of a choice. And even then, there are people who go through treatment more than once  and they die anyway.  This is not about bravery,  it’s about something else.

What would you give for another day?

Whoa, that’s deep.

Now I am trying to separate the compassion I have for this woman who died, with my own ego which can be a monster.  Am I sad for the loss of her?  Yes.  Of course.  But am I also sad because, well, this is the first person I have known in real life since my own breast cancer diagnosis who has done the unthinkable and died?   Yes.  I think that is part of it.  It scares me.  We were in the same boat at the same time and she died.  That is what happened.  While our lives are only barely intertwined, a part of me is taking her death  very personally.  Honestly, there is also this anger at how stupid all of this is.  Why her?  Why not me?  We got the same treatment so why am I here?  And more importantly, how do I stay here?  Dear God, how do I stay here?

And I have no answers.  No more than I had last week, last month, last year.  All I know is that I have today and I try not to waste it.  Better than that, I try to make use of it.

I try to be kind.  I try to make a little something of my own every day.  I try to avoid the pitfalls of my human nature.  I try to be a better person than I was before even if that is a person who is sitting on the couch because she has another bit of upper respiratory ick.  I try not to harm others.  Even when I really, really want to.  Even when they have harmed me.  I try to laugh and sing and be happy.  I try not to be scared.

I am sad for the loss of this woman I knew, who with a group of others, helped me through a devastating moment in time.  I hate this stupid disease that takes and takes.


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New Drugs

My visit with my new oncologist went well.  She agreed that I should try Metformin and she convinced me to try yet another antihormonal.  This one is called Femara.  It is used a lot with infertility.  I started the Metformin first.  It was rough going at the start.  Tummy troubles, nausea, dizziness.  I actually cut the dose in half for a day or so and then my body seemed to adjust just fine so I am now back to the full dose without problems.

I had a blood test about two weeks in because some people on Metformin can get something called lactic acidosis and it can kill you.  But my blood test came back ok.

Metformin is a diabetes drug but studies are showing that it is helping prevent some people from recurring with cancer.  I have no idea if it is doing anything for me.  But it is giving me some peace of mind.

After the bloodtest, I was given the go to take the Femara.

Yeah, I lasted a week.  It was really bad.  Aches and pains, foggy brain, dark thoughts, depression and I kept falling asleep everywhere.  I stopped talking too.  I stopped being me.  I felt like I had a really bad flu.  Oh, and my eyes itched and my hands swelled.  So I stopped taking it.

I am going to see my new doctor again this week.  Hopefully we can brainstorm a solution.

I have also been seeing a naturopathic oncologist.  I have been taking supplements since I finished treatment but she helped me to streamline to the most effective and third party researched supplements.  She added DIM and another concoction with Reishi mushrooms.

My husband is not completely on board with me seeing a naturopath.  First because it looks like our insurance will not cover my visits and secondly because…well… he is skeptical of fakery.  Totally understandable.  My naturopath has given me excellent care and advice and her work experience is impressive.  I am kind of shrugging my shoulders about it though.  I have no idea if any of this is going to work.

I am still trying to workout at least 4 times a week.  That usually looks like a nice long walk for at least 30 minutes.  I was doing cycling classes and lifting weights and doing Body Pump but all of that got pushed to the side after my week of misery on Fermara.  That was over 6 weeks ago and I am just now feeling  back to myself in terms of energy.

Tomorrow will mark 3 years since my surgery.  I feel pretty good about that.  It was a rough day and I really doubted I would be here 3 years later.  But I am.  Honestly, were it not for the Facebook memories that keep appearing, I would have forgotten it was even an anniversary of sorts.

As always, I am thankful for the friends and family who care about me and for me and make the effort to reach out to me and let me know they care.  It brings great comfort.

Life is good and it keeps moving forward.  I am just living and savoring and loving.  I hope you are too.


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The Dream of the Green Alligator

About two days before I was scheduled to meet my new oncologist, I had this crazy dream.  I was in my kitchen and looking under the sink and I found this container.  It was a clear plastic Rubbermaid container sealed with a lid.  I opened it with no idea what was inside and out sprung this vibrant green alligator. It was the most amazing shade of kelly green.  More significant was it’s sharp teeth and long curved claws.  I dropped it and it skittered away down the hall toward my son’s room.  I was terrified.  There was an alligator in my house, not only that but there had been an alligator living under my sink for quite some time.  How had I forgotten that I had left an alligator in a sealed container under my sink?  I actually remember feeling guilty for a second.  I mean, I am forgetful and all but it’s pretty cruel to leave a live little alligator in kitchenware for who knows how long with no food, water or air for that matter.  And then I snapped out of it and ran down the hall to try and catch the alligator and put him back in the container.  I had to keep it away from my sons.  But of course, as in most dreams, the alligator had grown significantly in my moment of hesitation.  It was growing by the moment and I knew there was no way I was going to be able to get it sealed in tightly and back under the sink.  No way.  My son came out of his room and saw it.  His eyes were huge and scared.  The alligator smirked at me and I tried to stop it.

And then I woke up.

It doesn’t take a genius to decipher that dream.

It’s the cancer.  The alligator is the cancer.

I try not to think about the alligator.  I try not to be that person.  The mom with cancer. It’s been easier since my hair grew back and the color came back to my cheeks.  It’s been easier since I put it away and tried to live again.  I’ve tried really hard to stop looking over my shoulder.

But things come up.   I mentioned to my regular doctor at my yearly physical that I had been feeling really thirsty.  Like REALLY thirsty. So she did a test and I am somewhat prediabetic.  So she told me I should change my diet, even though I eat pretty well.  She told me I should exercise.  Ok. I can do that.  But I did some searches and you know what can cause a person to become prediabetic?  Chemo.  Steroids.  Antihormonal medication.

So my question is, did I become prediabetic because I am overweight from treatment or am I overweight because the chemo and whatnot made me prediabetic.  I asked my doctor via email and she would not answer me.  My doctor doesn’t really care.  She told me to talk to a nutritionist and my oncologist.  Ok?

But there is another component to all of this.  See, researchers have found a link to prediabetes and cancer recurrence.  Yep.  In fact, here have also been several studies linking the diabetes drug, Metformin to preventing cancer recurrence.  I asked my oncologist about it a couple years ago and she said, “Are you diabetic?”

And I said “No.”

And she said, “Then I am not putting you on Metformin.”

So now I am prediabetic , so the next time I see my oncologist, I come armed with three empirical articles about the use of Metformin in the prevention of breast cancer recurrence.

And she will not touch them.  She will not take them out of my hands.  She just tells me no.  No.  She will not prescribe it for me.

“But you said if I was diabetic, you would consider it.” I can hear the pleading in my own voice.

But still, I am stonewalled.

Nope.

And that is when I started to get teary and frustrated and mad. And I told her. I told her that I felt like a sitting duck with this prediabetes diagnosis.  That I was inviting the cancer to come and get me.

That’s when she got really stern.  She told me that there is nothing I can do to keep the cancer from coming back.  She tells me I did not cause my cancer and if I want to consider myself a sitting duck that is my problem.

Then she asks me if I have anyone I can talk to.

I look at her.  “You mean like a psychologist?  Why yes, I do.  But I am not crazy.  I do not spend my life thinking about cancer but hey, since you are supposed to be my cancer specialist, I thought this would be a good place to express my concern.”

Things went downhill from there.

I fired her.

I wish I could say I looked her in the eye and said, “You are so fired you mean, condescending, heartless witch.”

But that’s not what happened.  I just looked at her.  I looked at her and said nothing but in my head, that lady was FIRED.

And I went home and cried to my husband.

You know, I get it.  She deals with people who are dying.  They are bald and sick and dying and I look healthy and vibrant and (a little) chubby and happy and here I am demanding attention.  Who do I think I am?

You know who I am?  I am a 43 year old woman, teacher, daughter, sister, friend, wife, and mother of two who had 35 lymph nodes in her breast and armpit that were full of cancer three years ago and I cannot forget that.  And darnit! I am going to try everything I can to live as long as I can.

I’ve got an alligator living under my sink that I am trying to starve and deprive of oxygen but it is still there no matter how far back I shove it in the corner.  That is the truth.

I joined a weight loss class at my Y and I am working on the logical ways to fight prediabetes.  I am doing the right thing…I mostly always do the right thing.  But I still needed to find a replacement for the doctor I fired because people, if your doctor treats you like you are a big freakin’ pain in their ass, then it is time to find a new doctor.

And that brought me to the visit with the new oncologist, recommended to me by a friend who is also a patient advocate.  The new oncologist is in the city but she sounds amazing and was worth the travel.

I just wanted someone who would listen to me.  Hear me.  See me.  You know?

Someone who would understand that I am doing the best I can to live my life while still occasionally stopping to look over my shoulder.  Someone who would help me keep the alligator under my sink…or even better, figure out how to set it free to never come back.

So I went to the city and I paid for parking and I sat in a new office and…

I think I found her.

More on that later.


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We threw away the pills today…

Most of them anyway.  Ok…the steroids.  Those are gone.  Why was I hanging on to those?

The Zofran went bye bye.  And a bunch of other stuff I can’t pronounce.

Cleaned out the medicine cabinet.

I wasn’t holding on to it.  It was more that I just didn’t want to deal with it.  You get that, right?

I also realized the other day that when speaking, I refer to past events in the timeline of before I got sick and after I got sick.  As in “Oh, remember that time we went for a hike at Silver Creek, you know, before I got sick, and we saw that deer?”.

It was an event that has replaced all others.  I’m not sure I like that at all.

No.  I really don’t like that at all.

Not at all.

I’m still here.  I’m still here in the past and the present.  This is what I have.
And really there is so very much joy.

If anything, having cancer has taught me to trust my instincts and be wary of red flags.  Mind them.

It’s also taught me to avoid all dysfunction like the damn plague.  I don’t see the point in fighting most days.  Most days, I just laugh and fly.

Still, the nights can be long.  So very long.

That is when the fear creeps in.  It always has that way.

And in the morning, I say thank you to the sun.

Every. Single. Day.


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Be Kind

The old medicine made me have to have yet another surgery in June.  A polyp that was thankfully benign.  The new medicine makes me anxious and achey.  It makes my mouth hurt.  I could write a million Facebook postings saying only that my mouth hurts but where is the fun in that?

I soldier on.  It is not a huge burden.  I laugh.  I smile. I drink green tea.

Because it’s still worth it.  Every minute.  Every second.  There is still so much joy.

So when you see me, be kind.

Just send me love.

I am here.  I can breathe.  Everything else is inconsequential.

Just love.

This.