Saturday, July 11, 2009

Treatment Number 12...NOT

That's right NO treatment for me.

I went to the hospital yesterday for my appointment with my oncologist and to have treatment. (I thought) When I went into the appointment room I first met with my nurse practitioner who told me that they were trying to get my CT Scan results (I had the CT Scan that past Monday). So we started going over my last 3 weeks and then she told me that I was going to be meeting with a Nurse Practitioner that specialized in pain management. I have been increasing my Neurotin and got to a level that it started affecting my cognitive abilities. I wanted off the meds or to try something different because I don't want to be living my life like a zombie. So that appointment was about switching to Lyrica instead.

During that appointment my oncologist popped her head in the room and said, "I have your CT Scan results." And then she said, "Everything looks great. Everything is stable. There are NO new tumors. This is great news." Then I started to cry. Everything is stable. OMG. It really is working. Finally something is working and I am doing great. This is all that went through my head. It had been a long week waiting to get the results. I choose to wait it out and have the conversation in person with my doctor. I am so glad I did!!!! I finished up the appointment with the other nurse practitioner.

My oncologist came back into the room and then proceeded to say, "I think it might be best to start doing your treatments every 6 weeks instead." "OK", I said. She said, "I don't want the neuropathy to become permanent and you are doing so well let's give your body a break." I said, "OK". She said, "Let's not do this treatment." I said, "What". She said, "Go home". I said, "What". She said, "Skip this treatment". I said, "Oh My God". She said, "I know I know your schedule." I said, "Yes my schedule." We all started to laugh!!!! She said, "It will be OK just skip every other treatment in your schedule." I said, "OK but what about the next scan and what if it starts to grow again and and and????" I was really concerned and scarred at this point. But then I realized how supported I am, how loved I am and how everyone in my life is holding for me to be "A Miracle". Especially me. This means that I will need to stop treatment eventually and continue living a normal life. I know that it is not totally gone right now but it will be and this is the next step in the process. So I went home.

And here I am updating my blog, by myself. This is all great news and I am so happy to have a week back to be able to play, work and be with my family on these sunny days of summer. Of course with lots of sunscreen! Hahaha. OK not that funny but very true.

Thank You to everyone that was supporting me this treatment and who I had to cancel.

My dear friend Max from Boston who comes every treatment to support and love not just me but my family as well. I am so sorry you can't get your hair cut this time. :) Thank you for all that you do. I will miss seeing you.

Thank you to all the neighbors that were going to deliver food.
Thank you Susan for arranging it all each treatment and
to all the neighbors that continue to deliver food
month after month aftermonth, without any hesitation.
It makes a huge difference
in my recovery process, Thank You!

Thank you to my MSIA Family that comes to give me Prayer Communion each treatment cycle. Thank you Alice for being my
Guardian Angel and for arranging it
and supporting me the way that you do.

Thank you to my Village of Angels!!!
My treatment support, Jann for loving me
just the way that you do.
Rose Angel for your words of inspiration and that
lovely rose I get before each treatment.
House Cleaning Angels assisting me so that
my surroundings are clean and fresh.
Thank you to everyone loving, praying, supporting
and holding that I will be "A Miracle".
God Bless each and everyone of us today and always.

Until next time,
Light, love and laughter,

Sunday, June 21, 2009

Bountiful Blessings

I want to express my great gratitude and humble appreciation for those of you that have stepped forward to support me and my family over the past two and a half years. As much as possible, when my health and energy allow, I try to acknowledge your support with a note or a phonecall -- but whether I can do that or not, know that in my heart I am thankful for it all.

Most recently, I made a special request for financial support to cover house-cleaning, and I am so grateful to those of you who've sent checks, or are planning to. It means more than you can know for me to feel taken care of in this way. It will allow me to save my very limited energy for the times I really need it -- without feeling like my house isn't a clean, healthy environment during this challenging time.

One of the hardest things I've experienced in all of this is allowing myself to receive anonymous gifts. You know who you are -- and please know that I love you and am so thankful for the anonymous gifts that have shown up to support our family. My Rose Angel, the Giant gift cards, the anonymous checks earmarked for house-cleaning ... the list goes on. My gratitude is huge for all of these, and my frustration at not being able to thank you personally is part of my learning process.

Thank you for being part of my Village.
With all my love, Shari

You've been asking...

... and here it is, me with hair. At least for now; it would seem that my hair is falling out again so I guess I should just enjoy it while it's here and show it off! However, Daria thinks that this amount of hair *still* counts as "bald."

Treatment 11 Update

Treatment day was Tuesday, June 16. I haven't seen my doctor in a number of treatments (I generally see my nurse practitioner) so we planned my treatment for later in the day to accomodate the doctor's schedule. I won't be doing that again -- it made for a really looooong day. Generally, my pre-treatment steroids keep me up til 1:00 a.m. on treatment night, but because we shifted the schedule I was up half the night (and not very happy about it!)

My Rose Angel delivered a rose and inspiring messages on Monday, and my friend Max arrived on Wednesday afternoon, a little later than usual due to horrific traffic in Boston. I keep telling her if she'd move to Chester County she could avoid the city traffic, but so far she's not buying it.

This has been a mixed bag of a recovery week. Wednesday wasn't too bad but Thursday and Friday were really challenging, with a lot of body aches. I slept a lot; the gloomy weather didn't exactly inspire me to activity. I was able to rally for a Father's Day celebration with my parents on Thursday. Friday and Saturday were mostly a wash-out; I stayed in bed late and took it easy all day. I managed to supervise a closet-cleaning project (Max's professional organizing skills put to active use!) and finish a jigsaw puzzle, but that's about it.

I'm still increasing the dose of the latest addition to my prescription arsenal; Neurontin (generic name Gabapentin) is supposed to help with the pain and tingling in my feet but I have to build up slowly to a therapeutic dose. I'm grateful I found an online pharmacy that sells it for less than the local stores since I don't have prescription coverage.

Before the next treatment I'll have a CT scan to determine progress and future course of treatment. For now, my next treatment is scheduled *in the morning* of Friday, July 10.

Father's Day

We celebrated Father's Day twice; once with my dad on Thursday and once with Daria's Dad on Sunday. Apparently great minds think alike, because my mom gave Tom scratch-off tickets and I gave the same thing to my Dad. It was hilarious to watch them scratching off to see if they won (but neither one hit the jackpot). Ususally Tom waits til the "real" holiday to open his gifts, but he couldn't resist the temptation of the elusive big win!

On Father's Day morning, Daria wanted to surpise Tom with a Happy Face breakfast. She needed a little help with the omelet smile, but she was responsible for the rest of the "face".

Sunday, June 14, 2009

Take Me Out to the Ballgame

Daria's been showing more interest in sports, so we got her a T-ball set. She's been practicing but as you can see, there's still a little confusion about whether to hit the ball or the T!

Saturday, June 13, 2009

True Love's Kiss

Daria's ballet recital followed hot on the heels of the end of pre-school. It was a very busy week. Her class' piece was performed to music from "Enchanted", the song is entitled "True Love's Kiss." Daria was so excited that when she came on stage for the first time and crossed the floor in her purple ballet costume she felt like she was in the movie! Daria attended ballet class all year long, and learned about listening to the teacher. They started serious bar work this year, and overall I'm very happy with the quality of instruction and pleased with Daria's progress.