Tuesday, June 2, 2009

bittersweetness

this is an interesting day. with mixed emotions.

as of tomorrow, it will be one year since my last round of chemo. yep. a whole year. 12 months. 52 weeks. three hundred and sixty five days. i was told that i would never be able to go more than 2-3 months without the poison until these diseases prematurely take me outta here.

once i realized that chemotherapy, in some form of regularity, be it a round here and there, or during health crisis, weekly would be a part of my life, i set out determine for it not to be. i began setting little chemo goals in two month increments. and yes, i'd really push it. go as long as i could. yes, there were times when i should have hooked up to my port sooner. yes, i'm sure i probably made myself sicker just because i was trying to 'wait it out'. oh well. i belive the body can heal itself if you give it a chance.

anyway, i can't tell you how excited i am. it didn't occur to me actually til last week at one of my many, many regular doctors appointments - the rheumatologist, the cardiologist, the oncologist, the pulmonologist, the neurologist. hmmm ..... feel like i'm forgetting someone.... oh yeah, the good 'ole internist. at some point, at one of those visits, it dawned on me. the feeling that overcame me is one i don't have words for. i can't describe, but will try.

it feels like i've won something. yeah. that's it. just that .... i've won something. i always thought i'd want to celebrate. like in a big way. but i don't. and i've been chewing on the why of it. then sunday it occured to me that it's because i'm really not outta the woods. i could have some kind of episode, or labs could get really funky, and then off i go to get hooked up again. trepidation is keeping me from wanting to celebrate. and i want to celebrate. i should celebrate. but....

fast forward to today. i had an assessment today for a fancy new fangled form of physical rehab therapy that i was really hoping would be the answer for me. it's called bioness and involves electrical stimulation to various parts of the body to help your gait and get your mobility back. to recap again, the disease moved to my brain now and i have seizures, which effect me like strokes, which has somehow interrupted the communication between my brain and certain parts of my body. so the right side of my body is very difficult to move. i also have severe drop foot, among many, many other issues.

so what happened? sadly, i was turned down. i've got too much stuff happening. on the surface, it really seemed like i was an ideal candidate so my neuro, hubby and i were all geeked about it. but nope. not gonna happen. apparently the electric stimulation to my central nervous system is just too much for my poor little body to handle. i began reacting almost right away - i began tremoring, and eventhough the gadget was hooked up to my right leg, i was feeling it in other parts of my body because the signal goes from where the gadgets attached, to the brain, then back again. but i was insistant on pushing through and getting up to walk. i was gonna walk! ( i have several pairs of 3 to 4 inch heels that are depending on me!!)

i deteriorated quickly and began having issues with my heart, and then had what was probably one of my siezures, but different though. it was all very unusual, and i'm still feeling the effects. it was not to be and it was all i could do to not cry while waiting for the elevator with juan.

so maybe i will celebrate. yes. i will. just don't know how. suggestions? i want to, need to get this taste out of my mouth. taste of bittersweetness.


bittersweetness.

be well, because i am ;p

10 comments:

Lovebabz said...

Gurl YOU BETTER GET YOUR ASS OUT AND CELEBRATE! Take My favorite husband and go get your swerve on!

I am so not co-signing on this bittersweetness. Go bake a chocolate cake.

You have come far Sister! I think a party is in order...plan a bash! You need a bash! I will come where you have it Bay area, ATL, PARIS! (Ok Paris...not until after july 26 2010) LOL!

I feel a party in the works!

Danielle Ricks said...

I've been sick before... for years.... very, very sick. Not as ill as you have been but I've been in a hospital room where my Doctor said to me "we really don't know what other treatments we can do at this point". They had given up on me but I wouldn't give up on myself. I prayed and meditated to God to take me if it was my time or give me the strength to fight if it was not. I asked friends and family to pray for me when I couldn't because I believe in group prayer. I am now healed and medication free for 8 years and they have no idea why... but I do!

Here's the key... I prayed for God's will to be done and I was ready to accept whatever journey he wanted to take me on.

What did I learn and what can I share with you? You are NOT your body. You are Gods dream come true. You are a spiritual being have a very human experience. You will either walk through this fire with a strength you did not know you had or you will leave a legacy for your loved ones on how to live with dignity. You are NOT your body but your body has all of your attention right now and understandably so.

You can't "think" your way into health. But you can claim.... AND BELIEVE WITH ALL YOUR HEART... that there is abundance of health in the Universe and you are worthy. YOU ARE WORTHY. There is something God wants you to learn, change, or do as a result of this experience. He is trying to get your attention and boy does he have it. You will not fully grasp what the Creator is calling you to do until you come out of this... until you walk through this fire.

But I will tell you this... the body is an AMAZING machine. It can take far more than you can imagine. It was built to survive and survive it will if you can only understand that YOU are NOT your body. You are a Child of God. Focus on your greatness.... even in your weakness. Focus on what you are learning about love, forgiveness, and patience. Focus on what you will do when this cancer is no longer invading your body. I know this is hard. Do you hear me? I KNOW this is hard. But you are NOT your body. You are NOT cancer. You are God's dream come true. Now, given the power of that get busy doing what you can, helping who you can, being an inspiration to who you can and let God's will be done.

In the meantime, surround yourself with positive people, books, music, art, loves of your life. Read my blog for ways to set intentions, affirmations and how to get through difficult times. Be happy when you have no reason to be. Be joyful when you have no reason to be. Claim health when you have no reason to do so. I will pray for you every day. Sending you peace, love and light!

Daniele

Sista GP said...

You were able to write this post. You are able to continue on the path that God has set for you. Celebrate within the true heavens in your heart.

Princess Tinybutt said...

@ babz - LOL!! you are a nut. a loving one, but still a nut! yes, i do need a party. i am in real need of a party. i so don't know where to start AND i'd rather spend the money on PARIS!! (yes, i'm being cheeeep!)
maybe we'll do a special dinner when you get to ATL with a few of my friends and fred??

@danielle - wow, thanks. i really needed that reminder. thanks for finding me.

Madeline said...

I'm here by way of @lovebabz. After I read your blog, I felt compelled to leave you with this: doctors can give you a prognosis regarding your illness, and your body reacts positively or negatively from treatments and your illness. Though you are suffering, God is the one who will ease your pain and has your care in His hands. He will see you through all of your ills & provide the healing you are seeking. Stay prayerful, positive and faithful; but most of all, let go and let God!

Saglady09 said...

I'm here by way of @lovebabz. After I read your blog, I felt compelled to leave you with this: doctors can give you a prognosis regarding your illness, and your body reacts positively or negatively from treatments and your illness. Though you are suffering, God is the one who will ease your pain and has your care in His hands. He will see you through all of your ills & provide the healing you are seeking. Stay prayerful, positive and faithful; but most of all, let go and let God!

Mizrepresent said...

I so admire your strength...i mean really who are we to complain when you have so much going on, and still keep your spark. I hope you take Lovebabz's advice and celebrate!

Princess Tinybutt said...

hey miz! i thank you kindly. funny thing miz, i say the very same thing about others. hmpf. but it is time to celebrate tho, lol!

madeline/saglady - yes HE will, yes HE can, and YES HE DOES. this i know for sure. thanks for reminding me :)

Dennis Pyritz, RN said...

Open invitation to you and your readers to participate in the Being Cancer Book Club. This month we are discussing “The Last Lecture” by Randy Pausch. “...the lecture he gave ... was about the importance of overcoming obstacles, of enabling the dreams of others, of seizing every moment (because “time is all you have…and you may find one day that you have less than you think”). It was a summation of everything Randy had come to believe. It was about living.”
Monday is Book Club day; Tuesday Guest Blog and Friday Cancer News Roundup.
Also check out Cancer Blog Links containing almost 200 blog links and Cancer Resources with 230 referenced sites, both divided into disease categories.
Please accept this invitation to join our growing cancer blogging community at www.beingcancer.net
Take care, Dennis

Torrance Stephens - All-Mi-T said...

u are a trooper