Waiting for Savasana


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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:

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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.

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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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Good Things

It’s the morning before Taxol #2.  I want to talk about good things in my life.

My Husband and boys are first.  They love me, protect me, care for me.  I could not ask for better.  I think back on that day in February when I met my dear wonderful shy husband.  The first words I ever spoke to him were, “Where’s the food?” and now it’s 15 years later and I love him more and more every day.  I never thought that was possible.

Then there are my friends, old and new.  They bring us food, they send us cards and presents.  They call and text and email to see how I am doing.  Yesterday, I was in a bind.  I needed a ride to chemo since my husband has to take my little one to camp at the same time.  I posted one Facebook asking for a ride and not 30 seconds later, my dear friend texted me offering to help.  And then, five minutes later, four more people had offered to get up at dawn and take me 45 minutes away from my home to the doctor’s office.  I cried.

I can’t name my friends because someone will be left out because I forgot and oh my, I would never want to forget any one of them.  The first person I told sat with me while I cried.  They all take care of me.  Watch my kids for me.  Get my house cleaned for me.  The bring me orchids (that I always kill, please stop the madness!).  They send me cupcakes and Chicago pizza.  I don’t know how I got so lucky.  Friends I love you, you are a good thing.  And this is coming from a girl who didn’t have a lot of friends growing up (boy was I a pistol!).  I love you.

My family. All of them.  All of them.

My brother’s visit brightened our whole weekend.  My Aunt’s cards, presents and kind comments are a Godsend.  She’s been through this in the worst way with a child.  I was in a coffee shop before all this madness really got started and the owner asked how we were doing and O said not great and he asked what was going on and I said, “The worst” and he looked at my son sharply (who is named for my cousin). And I quickly said, “Oh no it’s not him.” And he said, “Then it can’t be the worst because when it’s your child it’s the worst.” And I thought of my Aunt and agreed with him.  And then I hugged my son a little too hard for a coffee shop.

I love my cousin Kyle.  Always have, always will.  I think of him all the way along this horrible journey.  I like to think he has my back.

My uncle who picks people up at airports and drops them at my house and never complains.  Yeah…he’s a good thing.

I love all of the other cousins too.  I appreciate their kind words and thoughts and prayers.

My sister-in-law is a very good thing.  Love her.  He hubby isn’t bad either.  Thanks for checking in.  We are almost through what I perceive as the worst.

My mothers, both of them. And that’s all I am going to say about that.

My sister and brother and my new baby niece.  Babies bring a smile to my face every time.

I was teaching this preschool class and for unforseen circumstances beyond my control, I did what I consider the unthinkable, I had to leave them.  No worries, they were well cared for to the end of the year by a wonderful person.  But it hurt to leave them.  Two weeks after I left, I was diagnosed with breast cancer.  Hindsight makes it all seem like the right choices at the time, even though it broke my heart.  And I’ve seen some of those glorious kids from that wonderful class. They have brought me dinners.  Made me cards that make me cry.  One parent sent me a wonderful yearbook.  Each and every one of those families was and is such a blessing in my life.  Every year teachers fall in love with their classes.  I am so grateful to have been in the lives of these small children.  They are such a good thing.

What else?  Ice packs are a good thing.  Medicine is a good thing.  My oncologist thinks I’m an absolute weirdo but boy is she a good thing.  My Plastic surgeon is a miracle worker.   The nurses an P.A.’s are good things.

Shoes are a good thing.  Wigs are a good thing.  Lipstick is a really good thing.  It’s so good I went to Sephora and bought my old college standby, “Brown” by Bobbie Brown.  Its the first Lipstick color in her line and it looks good on everybody.  I need that lipstick!  I got it.  Good thing. Hats and having lots of them are a very good thing.   I bought two new cute ones at Target yesterday.  Wigs are itchy but still a good thing. T.V. is a good thing.  I watched every season of Gilmore Girls all through AC chemo.  My boys would run in my room and sing the theme song with me till Hubby and I were so annoyed.  They would yell it me if I tried to fast forward it.  I know GG was on the WB but it’s a fabulous show.  As much as I dislike Lauren Graham as Sarah Braverman is how much I adore her as Lorelai Gilmore.  I guess that means she must be a really good actress.  If you haven’t seen it, watch it.

Shop therapy is good.

Air conditioning is a fabulous thing.

My son’s garden that he planted with his grandmother is a good thing.  We got a bumper crop of tomatoes, people.  Whew!

My dog is a good thing, when she’s not getting in trouble for sneaking candy bars.

The nurses in the infusion room are a good thing.  Most chipper people you would ever meet in a roomful of grim.  I can’t do that job.  My hat is off to them.  My shiny bald head salutes them.

Food is a good thing.  Mmmm…food.  Love it.  The steroids give me munchies.

Books, magazines, T.V….all good things.  My house is a good thing.  Messy but comfortable.

Movies are great.  I watched Pitch Perfect at my last chemo.  Soooo funny and good quality.  One of my older son’s friends recommended it to me.  Even my husband liked it, and he didn’t like Silver linings Playbook which I adored.  Watching lots of movies over here.

My ipad is a good thing.  I spent my entire Saturday researching David the Bubble Boy.  When he was alive he was always protrays as this normal kid living in a habitrail since birth.  As a kid, I would read about him in my weekly reader and think this kid lives in a bubble and is happy but I am a mess, what gives?  He fascinated me and saddened me.  His life brought great breakthroughs but at what price?  Sad.

Well, it turns out the poor kid was fairly miserable even borderline psychotic.  It seems his one true friend was a therapist whose office was across from his room.  She says he made her promise to tell his real story.  So she did and she told everything and his parents got it blocked and tried to say she barely knew him.  But it’s funny.  In almost every picture, even the one where he received the bone marrow transplant that sadly killed him, that woman, Mary was there.  She was there with him when he died.  Now you can get her book on Kindle.  It needs an editor and is a bit of a plow but from my research, it appears she is telling the truth or at least the truth as she saw it. I read it in a day laying in bed fatigued (my RBC”S are low).  You can see the documentary on YouTube.  The whole story is quite tragic. It’s not a good thing to know what happened to David but it is a good thing to know the truth and for the first time in months actively need to know and do research. Here is part 1 of the documentary orginally run on PBS:

I told you.

Acupuncture, Reiki and Hypnotherapy are good things.  Moxa sticks are good things.

That’s all I can think of right now and I need to go get dressed because my friend is coming and I don’t want her to see me in my p.j.s.

Thank you.

All videos courtesy of youtube.


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Well, That Sucked

Man.  Taxol is rough.  It is rough in a different way than AC chemo.  But it sucks all the same.

Sucks.

Really sucks.

Tuesday and Wednesday were ok.  Then on Thursday I got body aches like when you have the flu.  These aches soon turned to a pinching feeling in all of my joints.

I was laying in bed and it felt like lobsters were pinching me.  It started in my right shoulder and then worked it’s way down my right side all the way down to my toes and then it worked it’s way up my left side.  And then is was a flurry of random pinches all over.

Advil couldn’t touch it.  Neither could Aleve.  Eventually I pulled out the big guns but that made me sleep in 13 hour shifts.

Aches pain and fatigue throughout the week off and on.

And my eyebrows are falling out.

And I am going to do this three more times.

Good thing is there has not been much nausea and I have been sleeping a lot but not loopy.

I am still getting cards from people and I can tell you it brightens my day.  I never knew the power of the U.S. Postal Service.  I plan to reciprocate with cards when I feel better.  Right now it is hard to do much of anything.

Thank you, thank you to all of you who have kept me and my family in your thoughts and reached out to us.  It means so much to all of us to know that you care.

And now back to me…

Yesterday,  my husband and I were playing a board game with our youngest.  We played it in my bed.  I could barely lift my arms so on my turn, I rolled the die and the child move my piece for me.  That is how fatigued I am at times.

Sometimes I lay in bed for hours just not moving a single muscle.  It’s like being in a coma.

This stuff is rough.

Once again, I just don’t understand how people who have jobs handle cancer treatment.

I’m unemployed and I can barely handle it.