Friday, September 10, 2010

Take off Your Clothes, Get In, It's Fabulous!

Taxol number 10, in the bucket.  Two more to go.

Saw my Vonda this morning, hug hug, and Kitty too, and Krissy and Mariah.  Waved to Lady Grace and The Good Witch flying through the halls.

Dang, met a new chemo nurse today and can't remember her name.  Started with an R and unusual.  I will call her Rain.

Rain was helping Kitty today, and gave me all my stuff into my PICC.  She was very nice.  I missed Kitty though.  I was happy when Kitty came in later after everything was done to change my dressing, and gave me my Kitty Love.

It just wouldn't be Friday without Kitty and Vonda.

Nothing eventful during chemo.  I ate my almonds and my banana.  I wore a scarf today.  Too hot for a wig.  I had told The Good Witch at our appointment last Friday about my insomnia for two days after chemo.  She had instructed Kitty to lower my decadron (cancer crack) dose.

Tonight I am no where near as wired and jittery and jacked up as usual on a Friday night.  I'm just on fire.  Now I get what the decadron does.  Remember that sunless sunburn?  My arms and face feel sunburned, and I am in a cold sweat.  My feet have been burning tonight too, both of them.

H-m-m-m, not sure which is better, which is worse, the crack for cancer patients, or more of the Taxol side effects.  I'm going to take a cool bath in a minute or two.

I had my first consult with my Radiation Oncologist today.  I was scheduled for right after chemo today, but somehow ran an hour late.  They were very nice to keep checking on me and waited for me to get over there.

I already knew someone on the Radiation Oncology side, she is the sister-in-law of one of my favorite Managers at work.  She's a real doll, giving me all kinds of info from their library when I first started going there, and always has a great smile when she sees me coming and going from chemo.  Sheesh, I can't remember her title, maybe Patient Coordinator, but she works the front desk and had scheduled the appointment for me.

I was taken into the Radiation portion of the Cancer Center.  I guess I will become as familiar with this side of the building as I am the chemo center on the other side.

I waited in an exam room to meet my second oncologist, this one taking care of all my radiation treatment.

I chose Dr. Lotus for her because she has a very kind and peaceful way about her, competent but delicate, I liked her.  She asked me some questions to see if I knew exactly why I would be receiving radiation treatment.  Yup.  Kill da cancer cells that might have remained after chemo.  Specifically she said that only target areas of Flopsy would be radiated, going up into my arm and lymph nodes.

She mentioned that my biopsy showed that the lymph node capsule where cancer cells were found was broken, so that is of concern, as cancer cells could have escaped into the tissue near my lymph nodes.

She explained I would need 28 treatments, or basically 5 1/2 weeks of radiation, given Monday through Friday, for about twenty minutes each time.

She said most patients tolerate the treatment fairly well the first couple of weeks; it's in the later weeks that sometimes the skin gets very raw and tender, and you won't even want a T-shirt touching it.  It can look like a sunburn or even a tan, and they will provide me with topical medicines to help, but it can be painful.

I told her when I was scheduled for surgery, she said they usually like to start radiation 6 weeks after.

If I'm doing well, can we start sooner?  Yes, at four weeks is possible if your general surgeon and plastic surgeon agree.

I've been hoping to wrap all this up by the end of the year, because January 1st I am subject to a new deductible with no spending account to help cover it until April 1st.  I don't know how many of you have a spending account, but it's almost like a medical savings account.  Out of each check, you designate how many pre-tax dollars you'd like to set aside for medical expenses.

When our plan through Husband's job renewed this last April, we had planned to set aside the maximum they allowed, $2,500.  That was the amount per individual that would be our out of pocket deductible for in network services.  Needless to say, with my diagnosis in late April, it was only a couple of months before I used up my spending account to pay my deductible.

I discussed this with Dr. Lotus and she completely understood.  She said she would keep all of this in mind and would do what she could, if things go well.  This is how it would work if miracle of miracles all goes well.

I have my surgery on October 26.  Dr. Lotus will call me two or three weeks after and see how I am doing.  I get the ok for radiation.  Dr. Lotus will have me come in three weeks after surgery for my radiation simulation.  They will take a CT scan of me to check where everything is and plan my radiation treatment.

I will receive my radiation tattoos at that time.  These are permanent tiny dots placed on my body so they can line me up with a laser for every treatment I receive, making sure the same dose is received in exactly the same place every time.

Four weeks after surgery I will start the radiation treatment, going for twenty minutes each time, Monday through Friday, for exactly 28 treatments.

I am not counting on it, as there easily could be complications, and it's also possible my surgery date could be changed.

Speaking of that, Husband found another highly recommended plastic surgeon on my plan, and I called and made an appointment with him as a back-up if things do not work out with True North and Dr. Hands.  Just my luck, someone on his team will also be out-of-network!

Husband also called the Patient Care Coordinator number the health plan gave him, and we will call them together on Monday.  They would not discuss my case until they have my permission.

Dr. Lotus asked me about my neuropathy and suggested once it starts, it may last for months.  I told her Dr. Martin had me start Cymbalta, which I have been on one week now.  It felt as if things were getting better, except for the right foot, but tonight, after another dose of Taxol, both feet feel worse.  Looks like I may need to accept that my best laid plan to return to work until surgery may be dashed.

So, that was my day.  Well, not all of it.  Some nice things happened too.  I need to focus on resiliency again, going with the flow, and having an optimum plan, but being flexible that I ain't drivin.  I am a passenger.

The only thing I have control over is my thoughts and my focus.

I'm trying.

Some days like a rock star.  Other days not so much.

I need a bath before I drench my bed.  A nice cool dip.  H-m-m, that reminds me, the first time I ever went skinny dipping.  My Auntie, Stewed Fruit, initiated me in the moonlit pool of her funky North Hollywood home. 

"Come on Dearie, take off your clothes and get in, it's fabulous!"

It was, and one of the best memories of my life.

I miss you Auntie.  Take care of your baby sista, my Mama, for me.  Only let her see me on my good days.

love, your deb



 

  

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