Waiting for Savasana


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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.


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Hello!

Well, I tried Arimidex after having my ovaries removed last October.  I lasted 4 months on the stuff.

My joints, especially my neck ached like I was 90 from the first week I began Arimidex.  But I could live with that.  After about a month, it seemed to get better.  It wasn’t fantastic but it was manageable.  I asked my oncologist about pain meds.  I had tried Aleve, Motrin and Tylenol.  She said nothing would make much difference except exercise.  So I tried that.  I keep trying that.

Anyway, I was cruising along and managing the pain when once again, same as Tamoxifen things started to kind of explode.  My hands got puffy, my face got puffier.  I could handle that though.

By January, my stomach had started to puff out. My whole abdomen really.   I thought it was weight gain and cursed myself.

February brought fatigue, brain fuzz and depression.  Fun! Fun!

Then I started to have asthma attacks again.  That sucked.

It’s hard to keep up the exercise when you can’t breathe and your feet hurt and your limbs are swollen, you know?  It’s not easy.  It’s a viscious circle.  It’s exhausting.  Being in pain all the time is absolutely exhausting.

And then about two weeks ago, my tongue swelled.  It filled my mouth.  I kept biting it.

And that’s when I looked up Arimidex symptoms.

I had not researched side effects before, even though my pharmacist gave me two pages of them every time I filled the prescription.

Why?

Because I was worried about self-fulfilling prophecy.  I didn’t want to give myself symptoms in order to excuse myself from taking the medication.  That makes sense, right?

Because I really wanted Arimidex to work.  I really, really want it to work.  It’s a very effective medication.  It starves cancer.

For me, even the nastiest side effects outweigh the risk.  Seriously, a little asthma is better than the cancer getting into my brain, my liver, my bones and my lungs.

At one point, I had chills and body aches and a fuzzy brain and I thought, Am I getting the flu or is this the medication?  And I realized how much that sucks.  That the last four months, I have felt like absolute crud because of a medication that is supposed to help me fight cancer.

I am guessing I lived with cancer a long time before it was discovered and I felt fine but the treatment is grueling.  Just terribly grueling.

It’s ridiculous.

Anyway, it turns out the swollen tongue meant I was having an allergic reaction.  A severe allergic reaction and we can’t have that.

Your tongue is a very important organ when you think about it.  It’s almost impossible to function when it is swollen to twice it’s normal size and is painful to touch.

I stopped the medication a little over a week ago.  I see my oncologist on the 20th.  There are more options left to try.  I am hoping we can figure something out.

Because without the anti-hormonals like Tamoxifen and Arimidex, my options are green tea, exercise and diet control which I am totally ok with but…

I worry green tea won’t keep the cancer at bay.  I worry a lot about this.  I worry about worrying.  I worry.  I just worry.

Although there is good news on the green tea front,  I had my DNA sequenced at 23 and Me before health reports were banned.  According to them, I have the genetic code that has been shown to respond positively to green tea to prevent proliferation of cancer.  Yes, there really have been studies done on this and I lucked out with a good code!  Go me!

And the weirdest part to all of this, I look fairly healthy.  I’m still chubby (in part from swelling) but my cheeks are rosey, my hair is back in full force.  It’s just a rage of curl.  I look much better than I did a year ago.

But the neuropathy still makes my hands and feet hurt.  I still can’t clap.  It hurts.  My joints still ache horribly even after a week off of the medication.  I feel so old.  I feel so sick.  But I just keep pushing forward, because it’s all I can do.  And as my dad would say, it beats the alternative.

I guess I better go put the kettle on, until March 20th comes around, I’m going to be drinking a lot of tea.


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Time Flies

Hey!  I’m here!  I’m still alive!  Whoopie!

I’ve been busy these last few months.  Let’s see, what’s been going on?

I decided to stop taking Tamoxifen back in August.  I just could not do it anymore.  For one thing, I could barely see out of my eyes because I was so swollen  they were almost shut.  I also could not breathe.  And I spent most of my time sleeping.  It was really strange and awful and finally I decided that I would rather be dead than spend the next ten (TEN!) years taking this gnarly drug.

I knew that stopping tamoxifen would mess with my survival odds.  I ended up going to this site called Cancer Math and plugging in my stats.  Guess what?  My odds of survival stink anyway.  Too many positive lymph nodes.  It’s scary to see it on the screen.  That I should possibly be dead already but there it was.

But here was the interesting thing, stopping Tamoxifen according to CancerMath would take 6 years off of my life.  But getting my ovaries removed would add the years back.

I had my blood tested in July and I was testing post menopausal.  Chemo messed up my ovaries bad.  Fried them in fact.

So I decided to get my ovaries out.  I had a baseline ultrasound this summer that found a nasty looking cyst on my right ovary anyway.  I’m done having kids.  The ovaries are kaput anyway and if it really makes my odds of survival better, why not?

So I had the surgery in September.  It was fairly easy.  Two tiny incision on either side and a tiny hole in my belly button.  It was all good except that for about eight days after surgery, it felt like I was being stabbed on the left side of my abdomen whenever I moved!  Stabbed hard with a twisty knife.  If I was reclined, I was absolutely fine but if I sat up or moved at all, the pain shot to a strong NINE.  It was rough.  Pain killers didn’t even touch it.

So I watched a lot of tv.  I binge watched Scandal which I found to be mostly good.  I wish Olivia Pope had more facial expressions than *constipated* but otherwise, it’s a good show.

I swear I could not even stand up for more than a minute.  It was really, really unpleasant.

And then one day, I was suddenly fine.  Almost no pain at all.  My husband thinks there must have been some internal glue that dissolved over night because it was a miraculous recovery.

Still, I spent 10 days inside my house.  Seriously.  I did not set foot outside of my front door for ten days.  And to be honest with you, it was kind of nice.  I understand now why people become agoraphobic.  It’s nice to just be in your house, in your pj’s with people coming to visit you.  It was pleasant.  Really pleasant.  A girl could get used to just staying in the house.  What the heck is wrong with me, right?!

It was different from getting chemo.  The day after chemo, I’d have to go back for my neulasta shot.  Then there were check ups and all that.  I was out and about with chemo.  With this surgery, it was nice to just stay home.  really nice.  Almost too nice.

Anyway, back to the ovary removal.  I was concerned that there would be more menopausal symptoms with the ovaries gone but it seems they were truly, truly fried because, if anything, my symptoms have improved.  Less anxiety, less hot flashes.  It’s one of the best things I’ve ever done in fact.  I feel pretty good.  I feel more like myself than I have since I was 12 and got on that hormonal roller coaster.  It’s pretty awesome to not feel cray-cray every month.

And I am trying a different anti-hormonal drug, Arimidex.  I have had some joint pain but it is easily fixed with Aleve.  Other than that, I feel pretty good which is a nice way to feel especially after the 8 months of feeling like a truck had run over me on Tamoxifen.

Quality of life matters to me.  I am not being glib when I say I’d rather be dead than spend 10 years feeling like something my cat bashed around and then pooped on.  And I was useless.  On Tamoxifen, I was an invalid.  Who wants to be that?  Not me.

Especially if this cancer free stuff is simply a respite.  Because you know what the first line of defense if I end up with cancer in my organs or bones?  Tamoxifen.  I’m not going to torture myself when I actually have the potential to feel good.  Does that make sense?

A lot of other stuff is going on.  We went to Disneyland!  I assistant directed a play!  I got a new preschool gig! I found more of my shoes!  But I’ll have to wait until later to tell you about it.  I have to go make this Cheeseburger Casserole.  It looks yummy and I am intrigued by the pickles in the ingredients.

I will let you know how it turns out.


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Boys Are Back

Waffle and Dr. Warlord  (their camp names) returned home from camp today.  Those were the names they chose for themselves and used all week.  Both boys had huge smiles on their faces.  Both boys gave the camp 10 out of 10 stars.  Waffle’s only gripe was that the first night Warlord got homesick and ended up sleeping in the teen cabin with him.  Eventually Warlord started sleeping in his own cabin on the third night.  Waffle claimed annoyance.  Dr. Warlord said it was all about love.

They told us that there was one part of the camp where they talked about hopes and wishes and everyone cried, including them, but they said it was a good cry.

For two boys who were extremely reluctant to attend this camp, they felt pretty happy about the whole experience.

We picked up Waffle’s, class schedule this week since he was away at camp.  What a social gathering!  It was nice to see everyone and weird to be there without children.

My boys are already back to their computer games but I think after that we shall play a game or two and maybe I can sneak in a snuggle.  It’s good to have them home.


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Boys at Camp

This is the week the boys went to Camp Kesem.

Kesem

This is a magical place for children who have had a parent with cancer.  It’s a place for them to just be kids and enjoy themselves.  We met the counselors in May at their informational meeting and the boys were excited to go.  But the night before, they both were a bit unhappy about being gone for five nights.  We assured them that it would be a good experience for them and a chance to bond with other kids going through the not so fun experience of having a parent with cancer.

We dropped them off on Sunday and will pick them up on Friday.  This is the inaugural year for the Santa Clara University Chapter so they kept the camp small at less than thirty campers.  There are 16 staff members so the ratios are excellent.  I have seen a few pictures and it looks like the kids are having a good time. My younger son, I think I will call him Ferdinand, was a little homesick the first night.  The counselors checked in with us and we helped them with ideas for easing his homesick feelings.  So far, they seem to be working.

There are many branches of Camp Kesem throughout the country and it is a completely free camp.  If you know of children who have a parent who has been through, is currently going through or has passed away from cancer, please send them a link to Camp Kesem.

It’s been really quiet in our house.  Too quiet.  I miss those boys.

But I know they are having a good time and that this is a great experience for them.

My first thought when I was diagnosed was for my boys.  I was so concerned for them.  I actually felt like I had failed them as a parent by being diagnosed with breast cancer.  I was so down on myself about what my illness would do to my boys.

And we had a rough time.  We bonded as a family but it was all still very rough.  The hardest thing for me is not being able to be the active and energetic mom that I used to be.  I know we all do the best we can but my best is not great at the moment and not at all what I envisioned for them.

And one thing I have learned is that having a parent with a serious illness can make you grow up really fast.

And that is why I am so thankful that an organization like Camp Kesem exists.  I hope my boys have taken full advantage of the opportunity to just be kids and enjoy themselves.

Because this stuff is really hard when you are a little kid.  And everyone has commented on how supportive my boys are and how well they have handled my illness, but that in and of itself is a concern when you think about it.  I mean, it’s great that they have been so awesome but it is hard to see them acting so grown up.  It’s not normal to have to grow up so fast.

But it is a reality for so many kids today.

I just know that this cancer stuff was never in my game plan.  When they were babies, I never once even entertained the thought that something could happen to me.  I was just trying to keep the two of them alive, you know?!

I miss those two so much and I don’t like the quiet that has fallen over the house.  I can’t wait for them to come home to us.

But I hope they are having the time of their lives.