Waiting for Savasana


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Still Standing

Gosh steroids are great.  I was so scared to take five of them but let me tell you.  They are helping so much.  My right arm is still tender and it often aches.  I do my lymphatic massage several times a day and my arm is still achy.  Steroids take that all away.

The day I went shopping, I was appalled my the three way mirror.  My arms and legs are so swollen, so inflamed from chemo that they looked full of cellulite.  My skin has been stretch so taught because I am just inflamed.  Every inch of me is inflamed.  I told my acupuncturist that my skin feels like it’s been dipped in pepper spray.

Steroids took care of that.  It takes the inflammation away.  My arms are still chubby but they don’t look like bags of cellulite.  Gross.

And my arm is almost pain free- yippie!

The “bone crushing Pain” is supposed to arrive tomorrow.  To combat that I am taking L-Glutamine powder, Benadryl and Claritin as well as some B6 and B12 all oncologist approved.  I will let you know if it helps.

My birth mother went through this a year ago, and during taxol, she iced her hands and feet and eyes to prevent neuropathy and nail loss and to try to keep her eyebrows and eyelashes.  Her brows and lashes fell out on her last treatment.  I opted to ice my hands and feet. So we brought our cooler full of ice packs.  The nurses scoffed at us a bit but went along with it.  I was only allowed to ice for 10 minutes at a time because she didn’t want me getting frostbite.

I watched movies and also began to watch Game of Thrones.  I have listened to the first book on audio and wasn’t in love with it but I found the first episode to be much faster paced than the books so I seem to like it for now.  Not sure I want to invest in the entire series.  I kept myself entertained.

Today I have my Neulasta shot.  Chemo destroys white blood cells, Neulasta makes your bones create more white blood cell so i get a shot the day after each chemo session.  So far my WBC’s have held strong.  I wouldn’t be able to do this dose dense chemo without Neulasta.

My husband was looking over our bills (everything has been covered by our insurance that I used to complain about but now am so grateful for) and discovered that one Neulasta shot costs $8000.

That is not a typo.  The little shot they give my in my chubby tummy costs more than the chemo (about $3000 a pop).

Thank goodness insurance covers it.  In fact, it looks like they get a discount on it.  They pay about $5000.

So what about the people who don’t have insurance?  What do they do?  How do they manage this?  Are they refused treatment?

I am horribly naive about all of this.  I didn’t even realize how expensive having cancer is until I got sick.

But what do people do when they can’t pay for this stuff?  Do they just lay down and die because of money or lack thereof?

$8000 a shot.  Yowza.  We’ve rack up $40k already.  And why does our insurance company get a discount?  I don’t understand any of this.

How do people without insurance survive?

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Update Taxol #1

I get Taxol today.  It’s made from Yew trees so it’s natural, right?  Ha!  Natural.  Lot’s of poison comes from nature.  But I will try to think fondly of Yew trees.  They may save my life.

Courtesy of Google images and wikipedia

Courtesy of Google images and wikipedia

Pretty eh?  Peaceful.  Lifesaving tree.  Mr. T may hate trees but i do not.  No sir.

I had to take 5 steroid pills at once last night.  I have been stressing about it for weeks.  Sheesh. 1 steroid pill 2X’s a day turns me beet red.  What the heck was going to happen?

Turns out nothing.

I did what my doctor told me and took an Ativan with the 5 FIVE steroids and I watched tv.  And then an hour later, I took another Ativan as prescribed and then I slept 5 hours.  And now I am getting ready to go.  I have ice packs to put on my hands and feet to try to protect them from neuropathy (tingling and numbness).  I have all kinds of medication and alternative stuff like vitamin B’s and L-glutamine which is also supposed to help with neuropathy.

I had blood work done yesterday and I got the results last night.  My blood is all kinds of messed up but apparently still good enough to get chemo.  Surprisingly for the first time, my blood sugar is elevated, which I find disturbing.  Never in my life have i had elevated blood sugars.  Oh yeah, and I havesome”ToxicGran” white cells which if Dr. Google is right explains why I am so achey and why it feels like every tissue in my body is inflamed.  But I will defer to my Dr. on all this.  She went to Harvard and she’s been in this biz for thirty years.  I trust her expertise.

I am getting “dense dose” Taxol.  It will be 4X’s every 2 weeks.  I asked my Dr. yesterday about people who get weekly Taxol because i heard the side effects are less with the lower dose.  She told me that if I did it weekly, it would be for 12 weeks.

What would you do?

4x’s over 8 weeks or 12x’s every week.

I’m sticking with dose dense for now.  I want to get this part over with.  4x’s over 8 weeks is the plan.

I hate all this.

When I feel sick IRL, I take vitamins.  I usually feel better.  I can’t do that now.  No multivitamin, certainly no Emergen-c.  Only approved vitamins.  No Antioxidants during chemo.  It defeats the purpose.  Isn’t that crazy?

Yesterday, between getting blood work and seeing my Oncologist, I walked over to a mall.  Very proud of myself for making it there and back without falling over.  Got a blister on the bottom of my foot from my flip-flop though.  Anyway,  There was a sale.  I got two cute skirts.  Size L.  Because of the steroids, I have now gained 10 pounds since beginning chemo.  I weigh more than I ever have besides when I was pregnant.  I don’t really care. Yes I do.  I’m bald.  Why shouldn’t I be chubby too.  I am channeling Molly Weasley and she is a bad ass.

Courtesy of google images

Courtesy of google images

So I bought 2 skirts.  I was wearing my curly short wiglet with a cute hat.  I am all about the cute hat.  The lady checking me out asked for my driver’s license and commented, “Nice hair” ( from my picture: curly, long, dark…awesome).  I thanked her.  Then I leaned in and said, “I’m actually bald right now.” and I smiled.  She looked at me and said she would have never guessed.  She got a little teary.

“Oh no. Did I bum you out?” I asked.

“No,” she said, “Thank you so much for sharing that with me.”

And we smiled at each other.

Some people hide it all.  I can’t.  I never could hide who I am.  It’s just not me.

Wish me luck today.  I am expecting to be achey by Thursday.  Some people have described Taxol pain as “bone crushing’. I gotta stay off the internet, people.  Somebody stop me.

Ok, here goes nothing.


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When I Feel Good, I Make Stuff

Yesterday, out of the blue, I felt human.  For the first time in weeks.  I had a little energy.  I laughed louder.  I was social.  I went for a walk with my husband and even said hi to a neighbor.  It all started before the sun even came up.  I woke up at 6am feeling pretty good and got started on putting together and finishing a baby quilt for my sister’s soon to be new arrival.  My youngest and I did the preliminary work (he asked for a sewing machine for his 8th birthday and he got one).  I sat on the floor in the early morning light and started pinning squares together.  A few hours later, I had this:

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When my little one came home from camp, The Eldest and I exclaimed his name together. “HEEEEYYY!!!” He came in for a hug, grinning from ear to ear.  I haven’t seen that smile in awhile.

This morning I got up and made french toast for everyone.  “Mama’s back.” The Husband quipped.

For now.  In this moment. I am.

Today I called a friend, folded clothes.  I’m going to make a bag for my niece.

I hopefully have four more days of this feeling pretty good.  I hope to make the most of it.

It’s nice to be back.

 


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Fatigue

This round seems to have brought on a great deal of fatigue.  I am very sleepy.  I can barely move.  I’ve been sleeping a lot.

Not as much nausea so far.  I stay on top of the meds.

Today is a day to celebrate.  My eldest was born 12 years ago on this day.  He is a light…a wonderful boy.  We are so lucky to have him.  I just adore that boy.

And it is such a pleasure to see him grow into such a thoughtful, friendly, kind young man.  It’s just so great being his mom.  It is an honor.

I love you, Sweetie.

 

manda

IMG_1403


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No Pollyanna Here

I am hurting over here.  There is no way to sugarcoat it.  Every treatment seems to bring new challenges.  Each one is worse than the next.

I am barely functioning.

The boys are at day camp and doing well.  I’ve been lovingly calling them my daycare kids.  See, I have always been home for them at least part-time.  My kids have had a regular babysitters through their lives but mostly, especially in the summer, they are with me.  And that is how we like it.  That has been our plan.  Do I even need to say that this is not a judgement on others?  Because it totally isn’t.  I made a choice long ago and this is how I like my life.  Hanging out with my kids in the summer is one of my favorite things ever.  We cook, we garden, we go on minitrips to the beach and other glorious CA locals.  We have nice summers.  We watch tv.  We read books. We swim.  We roast marshmallows. They play tennis.  We ride bikes.  We hike.  We play.  Our summers are usually idyllic. And I am fully aware of how lucky I am to be able to spend the last 12 summers with my children.

And now I am barely hanging out with anyone at all.  I’m in my room, feeling like crap.

Extended care.  My kids are signed up for Extended Care at many of their camps.  Because Extended Care beats hanging out with hairless, nauseated, barely able to lift her head up sick mama any day of the week.

No cookies are baking in the oven.  The kiddie pool got put out on the street.  There is no fun happening at our house unless Daddy is facilitating it and Daddy’s got to work.

I am so very sick.  No kid needs to be around that.

I have to say though, both boys are exhausted.  They come home TIRED.  We chill in front of the tv for a bit and then it’s bed time.  Then they get up and do it all over again and I stay home in bed missing them.  Those two boys I love so much.

Feel sorry for me, not them.  So far, they are ok.

This summer, my boys are making comic books, going on animal adventures, learning to fish, making spaceships, doing science, having fun with physics. Heck, the oldest is even going to Band Camp.

These boys are busy.  And yes, it is costing us some dough but it’s cheaper than a nanny when you break it all down and my big hope is that those two monkeys can escape this summer relatively unscathed by my illness during treatment.

And all of you who are like me.  Don’t judge the Daycare Kids.  I don’t.  But I never did.  Sometimes, it’s the only thing a Mama can do to keep everybody sane.