with acknowledgement and understanding comes acceptance

Please bear with me because unlike most of my other

blog entries these next few ones may be jumbled

and lengthy and not so much thought out like my

usual blog ways.

Partly because my head is full of jumbled information

lots in a little bit of time.

The way I sort these things out is by writing

and lots of thinking but I know that all of you out

there are anxious and curious to know how all

of this stuff is turning out,

so I feel like I need to sort out here on my blog

instead of on paper first. So here is my first attempt.

THIS VANDERBILT PLACE IS HUGE AND VERY

KNOWLEDGEABLE. RON AND I GOT INTO THE PLACE

AT 10:30 am and didn't leave until 2:00pm

So much stuff was discussed and it is still being absorbed

in my internal computer system I call my brain.

Let me try here to begin to explain some.

All my records from 1968 from Touro hospital

were destroyed in a fire. They received no records

from there.

So what they did is they researched treatments that were used

for Wilms' Tumor back then and summarized my care around that.

The ironic thing is that in 1969 they began a Wilms' Tumor

research and treatment protocol and everyone diagnosed from

that time on is in a history bank and all treatments were followed in

the same way according to this research.

Because I was diagnosed and treated the year before,

basically they could have done essentially what they wanted.

However they do feel that my protocol was probably very close

to what was used at the time.

My name was not in the data bank so no information was

obtained there.

Basically there were only two chemotherapy drugs used on children

back in those days and it was one or the other not both

so they are fairly certain on what type of chemotherapy

I received. Both make you extremely ill and both make you

loose your hair. However because I have no nerve damage or

problems with nerves in my arms or legs they do believe

they know which of the drugs I received.

This is one of the good things I found out.

The other one causes lots of neuropathy issues and since I

suffer from none of that, I probably got the other one.

I would have been given this drug for a total of 15 months.

This also makes sense to me since I have memories of going

into the hospital every few months for a long time.

My teeth problems, ridges and stains are all from the

chemotherapy but besides that it has not had

any long lasting effects on me which is good news, very good news.

They feel that to have a recurrence of cancer from

having received this drug is slim to none since 41 years later,

I would have had it already.

Now for the radiation part:

Basically all my problems from my back to my abdominal issues

I have had in the past, are all caused from the radiation I received.

This has always been speculated in the past by doctors

who just didn't know or had no history to know.

Now I know, no more second guessing whether any problem

I have is from this radiation, it is , pure and simple.

The scoliosis, the sacrolisthesis, the osteoporosis,

the bone fragments floating around in my back,

all from the radiation.

In 1969 radiation was used only after the kidney was removed.

the fact that I received it 6 weeks before and 6 weeks after

means I received twice what another child would have gotten

just one year later.

Basically I was cooked then reheated later.

The good news, They are quite certain that my breasts, heart, and

lungs were protected in some way and that the bout I had

last year with my heart is not related to radiation

nor is my thyroid issue.

Other good news is that they would have radiated everything from the

spine to the right of my body but the kidney on the left

has been protected and is still working wonderfully.

The doctor read the quite extensive surgery notes from

Dr. Faucheaux when he did my hysterectomy and

she said that the mess my abdomen was in can tell

her about just how the bones must have suffered.

She was quite surprised that I have no stomach or bowel

issues at this time after reading the surgery report

and warned me of the possibilities of future intestinal problems

and the need to see my gastroenterologist with any symptoms

I may get.

I explained that prior to Dr. F. doing the hysterectomy I had

many abdominal issues and was hospitalized a few times

with weird fevers and fluid found in my abdomen but since

that hysterectomy all those problems have subsided.

They have studied all my reports from many doctors and

I must say I was quite impressed with how much

time and studying was spent on my case.

All my MRI's and CT scans show many issues that

are bone related and one of the questions I had was

would back surgery take care of my pain issues.

Unfortunately she said that although on xray most

of it looks like it could be fused by an orthopedist,

what a normal orthopedist does not know is that

the pain would still be there.

It may help some but it may make it worse because

the fact is the majority of the pain is just from

bone damage from radiation and that cannot be surgically fixed.

I have tried to explain to her what the pain feels like and the

best way I can explain it to someone else so you can get an

idea is it's like having a toothache that always hurts.

Sometimes the toothache is bearable and you can go through

your day, it's always there and certain things you eat may make

it hurt more but all in all you can get through your day.

Then there are those days that eventually the toothache gets

so bad that you have to go to the dentist.

Well, these are what I consider my bad days, the days

I can hardly make it out of bed.

So they pain is always there and from the news I

got yesterday will always be there.

There are also many things they still cannot answer for me.

There is no way to know what the future has in store for me,

although every year the cancer survivor ratio increases,

from way back in the 60's treatments were so different and

because we are the oldest surviving groups no one did studies

or even worried about late-effects.

They explained that this is a new field of medicine

soon there will be places everywhere that specialize in late effects

because there are now millions of survivors out there

so the need is finally here.

The questions of will I be able to continue to work until retirement,

will I ever be wheelchair-bound, etc.

Well these are unanswerable because it is individual for each patient.

I know, too much information to understand,

I'm having trouble myself.

So in a nutshell, I must now find a way to stop fighting

and denying that this pain is real and not going anywhere.

There are lots of new things being developed out there and

today I will have an MRI of my whole spine.

This will then go to their chronic pain cancer doctor

and their cancer orthopedist for consultation.

I will probably have to come back to meet with these two specialist

or they will consult with physician's in my area if they

can find some that specialize or can treat me closer to home.

There is a chance that I may be a candidate for a

spinal pump that could be inserted in my spine for pain relief

but they will have to see if there are doctors who are in my

area who could maintain this for me in case of emergencies.

Even if it is not something that I can have now, in the

future it may be achievable because this field of

medicine is just growing.

They will help me to find a counselor who specializes

in cancer survivors in my area to help me

accept the fact that this is my life,

I cannot do what I used to do and I will

have to be on some type of pain regimen.

I have fought this for too long and I have to

come to some type of acceptance of the fact

that I will have to be on some type of drugs.

This is the hardest for me,

many fears come with this realization,

none I'll go into detail about because it is a personal thing

but I will have to find my way.

So I hope this helped some of you be able to understand a little

better, if my thought are jumbled it's because they are jumbled

in my head right now.

Love to all!!!!!!