Waiting for Savasana


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Counting My Chickens

The slow climb out of the hole of pain has begun.  Wednesdays are usually the day.  I am feeling a bit better.  Not great.  Not functioning but better.  And every day I will get better until I get thrown back in the hole this Tuesday.

But that is the last one.  The last Taxol chemo!

It is still the pits (pardon my pun) and I will have to climb my way out of it again but then chemo is over.  It can’t come soon enough.

My boys started school last week and things are going well.  They are really, really happy.  I know that seems strange to say, all things considered but they are children and they are resilient and they are really, really happy.  It makes me feel so glad.

But I also feel left out.

I am sitting on the sidelines.  On Monday, I think I saw the boys for all of ten minutes.  On Monday I was in so much pain that they couldn’t hug me.  I also can’t walk much.  The bottoms of my feet hurt so much.  I feel like The Little Mermaid in the actual Hans Christian Andersen story.  When the mermaid got her legs, it was also a curse.  Every step felt like a thousand razor blades.  Yeah, that’s me. Every step hurts.  Every step.

So I am in bed a lot and I am grouchy.  I hate this.

I talked to the oncology social worker yesterday about the pain among other things.  She says it happens and I shouldn’t beat myself up about it.  Because I am.  Beating myself up about it.  I am really mad at myself for even having the pain.  But the pain is real and it is there.  There is a part of me that keeps telling me it’s all in my head and that I am just being lazy.  I know where that stupid self chatter comes from but it is difficult at times to turn it off.

Yes. Really.  I am that crazy.

I think part of it is that my brain is working overtime.  See on the previous chemo, I was so out of it and sick with nausea that I didn’t do much of anything.  I slept and was foggy and sick.  But I’m not sick now, just in tremendous pain.  My mind is sharp and clear and I am bored.

But there is an end in sight.  My only problem with the end is that I get thrown in the pit of pain again.  This is truly mental and physical torture.

Monday night, i was mad at my oncologist.  I was mad at her nurses.  I was mad.  How could they keep doing this to me over and over again?  Are they inhuman.

Thing is, I know they are trying to save my life.  I know this.

The first radiation oncologist I met said he was impressed with the doses I am receiving.  He says it is my best chance.

But I am still angry and annoyed that I am having to go through this.

I was told that Taxol would be easy.  I would rather have more surgery than get more Taxol.

But I do recover every time.  I do crawl out of the pit every time no matter how far down they throw me.  And despite the being poisoned every other week this summer, I am holding up quite well.

I have not been hospitalized.

I have not had any infections.

I have not been sick outside of the side effects.  Not so much as a cold. I have had one fever but it only lasted a couple of hours.

Knock on wood.

I just have one more to go.

One more.

And my future?  I see myself walking on trails.  Walking for miles.  Then running.  It is the vision I have in my mind.  But to start, I just want to go for walks again.  I just want to be able to hug my family.  I just want to cook dinner and bake and walk my kids to school.  I just want my life back.  Really, that’s all I want.

I have marks on my fingernails.  Lines that run across the base of each one.  I now have three.  Three on each fingernail.  My husband says I am a tree.  I don’t feel like a tree.

Just one more to go.


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A Patient Patient

You know I have been waiting forever to use that title.

I finished round 2 of Taxol and it was just as rough, if not rougher than round 1.  Blergh.

My oncology nurse told me that they are finding that younger women feel more pain from dose dense Taxol, perhaps because they have younger nerves.

I have no nausea just a lot of pain.

Two days ago, I told my husband that maybe I wouldn’t do round 3 and 4.  I was feeling that bad.  He got worried.

As of today, I will drag my butt to round 3 on Tuesday.  For him.

I am also developing neuropathy despite icing my hands and feet during chemo and taking mega doses of L-glutamine.  It is difficult to walk.  Pains and numb spots in the bottoms of my feet.  Good times.

I am finding it makes it difficult to write thank you notes.  I wrote two yesterday and my hands really hurt.  So that’s my excuse for not writing anymore.

I am trying to be normal but I am finding I need to be patient with myself.  I do not have a lot of energy and I am in a lot of pain.  It makes me a little grumpy.

Last night my little one and I were swinging on our glider swing and we noticed these:

IMG_1483

They are pomegranates.  We have a bush?  Tree?  It looks bushy to me.  Whatever.  We have one in our yard.  We also have a lot of squirrels because there is a large oak tree next door.  Every year, we get a crop and every year, the squirrels get to them before we do.  This year, there appear to be several that are out of reach for the squirrels.  The little one and I got very excited and Daddy came out and took the picture.

We had a great time snuggling in the back yard chatting away.  Until I was told I was hated because I won’t allow him to get a guinea pig.  Oy!

Whatever.

Still not getting a guinea pig…and now there is a price to pay to get back in my good graces.  I told him he has to do five nice things to negate the ugly.  I’m thinking we will start with breakfast in bed…

Here is me with my chubby steroid moon face.

IMG_1476

I don’t know what I can do about it.  It’s the steroids and the Taxol.  They are doing a number on me.  The more water I drink, the puffier I get.  I was given some lasiks to help get the fluid going.  There’s not much more I can do.  This is what I mean about being a patient patient.  I don’t even recognize myself but there is really nothing I can do about it.  I just have to keep on keeping on and get through it until I am a patient no more.

My hubby is so cute.

I’ve mostly stopped looking in mirrors.  Except to draw on my eyebrows, which is something I am surprisingly pretty good at.  Even my husband has commented on my eyebrow skills. And one day, my eldest asked me if my eyebrows had grown back!  I’m that good.  I am quite proud of this because I know people in real life who can’t draw on their own eyebrows (now I want to take them in a bathroom and help them, perhaps this will be my new mission in life…I am looking for one, you know).

Having cancer does not make one an angel or a saint. Snarkety-snark-snark-snark.  I actually wrote a post about that very topic based on my own personal experiences but it is in draft mode because I couldn’t express myself accurately.  Basically, you are just you, with cancer.  I’ve learned this the hard way.  Mostly, I am still nice albeit grumpy but I am no angel.  I can snark with the best of them.  I can also still stand up for myself.  I have not changed one bit.  And for me, that is a very good thing.

At the beginning of this, many of my friends old and new kept calling me feisty, as in “You are the feistiest friend I’ve ever had, you can beat this!”  I think that is saying a lot.  It hasn’t changed and I am feisty.  Ask my children.  Ask my husband!  Ask anybody.

But I am trying to be a patient patient.  Patience was unfortunately never one of my strengths.

Next time I will write about my adventures so far in the world of Radiation Oncology.  But based on our wacky experience on Monday, I am going with the doctor my oncologist initially recommended. Meeting him tomorrow. I hate to leave you hanging (because it is a good story) but it is the middle of the night and I need to try to get some more sleep.


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Good Day

I saw my Oncologist on the Monday before chemo.  It’s funny, my blood draw was at 1:30 but I wasn’t seeing her until 5 and it seemed pointless to go home so I drove over to Target.  I was walking around like I love to do and I got really, really tired.  Really, really fast.  And my hips started to hurt and then my back started to hurt and then I needed to sit down.  I bought some dresses and clothing and I picked up some Advil.  I feel like an old lady but my brain feels like me.  The disconnect is disconcerting.

So I got to my car, downed the Advil and drove to a coffee shop where I ordered a double shot Americano and a raspberry crumble and I sat down with a book and read and ate and sipped coffee for a long time until it was time to visit my oncologist.

I like my oncologist.  I’m not sure how she feels about me but considering the fact that she is trying to save my life, I guess we don’t need to be bosom friends.  And anyway, I always care too much about what people think of me and a long time ago, back when i was still in my twenties someone told me that by the time a person reaches forty, they don’t care what people think of them.  “Well then, I can not wait to be forty.” i exclaimed.

I’ve been waiting and now I am forty one and I still care what people think of me.  Darnit.

I think we may have had our first disagreement.

My Plastic Surgeon has been on vacation so I have been getting my fills done by his Physicians Assistant whom I really like.  Yep, I’m still getting fills.  What’s a fill?

After my mastectomy, the plastic surgeon came in and put in tissue expanders in my chest under the muscle of my chest wall.  At the time of surgery, he filled them each with 100 cc’s of saline.  Those 100 cc’s didn’t do much.  I emerged from surgery with the very flat chest of a ten year old girl.  Ever since, I have gone in regularly for fills.  There is a dock in the tissue expander that they find with a magnet.  They insert a syringe of saline and blow me up in small increments.  Eventually, I will have a second surgery in which the tissue expanders will be removed and silicone implants will be put in.  I hear the implants are much more comfortable than the tissue expanders.  I hope so.  Unfortunately, I have to wait six months after radiation to do the exchange.  So for now I’m stuck with fairly nice looking rock hard Foobs aka Fake boobs.

And when I say rock hard, I mean it. It’s embarrassing giving people hugs.  As in “Oops sorry you got poked in the chest by my foobs!”  Yikes.

So there is a little problem with the expanders and that is the unforseen lymph node involvement and the fact that I need radiation.  One of my foobs could fail during radiation, in fact, I was told that there is a 30% chance it can fail.  But I was also told that the clinic I use has a much higher success rate and to stay in Palo Alto and not go to the satellites.

So guess what happens?

My oncologist recommend that for my convenience, I use a satellite office that is closer to my house.  But I don’t want to and I tell her so.  But she explains that the doctor she wants me to see is from the main clinic and just moved over.  But I still want to stay at the main clinic.

I went in for my neulasta shot and while I was there, I made an appointment with the head of the department whom I have heard good things about.  I even made a friend yesterday in chemo who had radiation with a tissue expander with that specific doctor and it was a success!

And BTW, yea for me!  I made a friend at chemo!  It’s not as easy as you think it would be.  People tend to keep to themselves, can you blame them?

I got home and about twenty minutes later I got a phone call…from my oncologist.  She was questioning why I was using this other doctor.  I explained that I just wanted to stay with the main place and that I felt more comfortable there.  And then the people pleaser in me apologized.  I apologized!  Of course she said I didn’t need to apologize.  But you know me, I still felt badly for going against her recommendation.  She already thinks I’m a weirdo.  Oh well.

Anyway, it’s just a consult.  I could decide I don’t like the guy and check out the one she recommended.

Needless to say, my husband is a bit exasperated with me.  He thinks I should follow the doctor’s recommendation.  I just think I need to cover all my bases using the information I have.  I mean, they are my fake breasts.  I really want them to be successful, you know!

Because if it fails, it means more complicated surgeries and a lot more pain and I am already feeling like the walking wounded over here.

One good thing that happened on my visit with my oncologist (whom BTW I adore and respect and would recommend to anyone going through this) is that when I told about the lobster pinches, she recommended I take my old friend gaba pentin.  I had to take it after my surgery because for three weeks, the back of my right shoulder felt like it was on fire.  So I was given this stuff and it worked great.  And then when my shoulder stopped hurting, I stopped taking it cold turkey because no one told me to do it otherwise and that was very bad.  I cried for like four days straight.  Cried for hours, inconsolable.  We didn’t know what the heck was going on.  My husband was worried.  And then we figured out it was the going cold turkey from the drug.  Never doing that again.

So hopefully, this stuff will keep the lobster pinches away.

I really like taking gaba pentin so far.  It makes me chatty and happy and sleepy.  But this time around the pharmacist gave my husband a sheet saying that it could turn me suicidal. (WHAT?!!! I don’t think so.  I haven’t come this far just to off myself now!) And she admonished him to keep an eye on me.  Uh oh.  Well, for now I do not feel suicidal at all.  Just happy and chatty and fairly loosey goosey.  And for the first time in weeks, my right arm isn’t hurting, so that’s a good thing too.

All of this is not easy. And I do not enjoy being a patient.  I found out the reason I got so tired walking around Target is because my red blood cell count is officially low and that means I’m going to be a slow mover until they come back up.  My hemoglobin has crossed the threshold to low too.  Personally, I’m glad to know there is a reason for all this fatigue and that I’m not just lazy.  Some days it is hard to move.  So I lounge a lot which is ok because I like to lounge but then I feel guilty.  Well I’m not feeling guilty anymore.

I put on my pajamas and am in full lounge mode.  And I am very ok with that.

Only two more chemo sessions to go and then I get to ring a bell and get the heck out of there.  Hopefully forever!

ETA: Man! This is a long post!  I told you that drug made me chatty!


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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.