Latest update

My B12 level was borderline.  So I’ve been put on 1000 mcg of B12.

So far I’ve felt no change since I’ve been on it. I still have bone pain. I still have fatigue.  Both are increasing.  So, I go back to the PCP on Thursday to see what’s next.

My cat scan of my sinuses have shown nothing other than my diviated septum. I’m still waiting to hear from that doctor as to his opinion on what to do next.

Once again, tests with no answers except “well, it’s not that”

No news is good news?

I've not heard from my PCP with the results of my last blood work. Luckily, I have an online account so i can access my files and I've read my results. So far, it all looks normal.  I've made another appointment with my PCP as my symptoms haven't subsided.  I'm still very fatigued even though I'm making a conscious effort to get my recommended daily sleep. I still have bone pain as well.  I have also decided that I'm not going to allow anyone to brush off looking into this further. I feel i brushed off symptoms too much the last time. I'm not doing this this time.

Lets have an update

I've not done and update in what seems life forever. Oddly the last time I even opened blogger was a year ago and I never finished my post.
But this blog was invaluable to me for a long time, and I’m afraid that once again it will be.

So lets get you up to speed...

Three years ago, I started having breathing problems. I developed a deep cough. I was given multiple asthma medications they would work for the immediate but nothing seemed to control the daily onset of lung spasms.
After some insistence I went to see a pulmonologist.  He did some tests and assured me my issues weren’t post chemo related, which had been my fear. He was fairly certain also that I had asthma just not treated properly.  But he took my word and had me do some more tests.  Low and behold no asthma. It wasn’t exercise induced nor was it induced by a methacholine challenge. So after being on asthma medication for literal years I was off of those!

Fast forward about 5 months Christmas 2017.  I had a stroke in my brainstem. It affected the vision in my right eye. It was caught early, and even thought I was told recovery would take three months, once again I whizzed through my recovery in three weeks.

My right eye is still a bit on the wonky side when I’m tired, and I need to get my glasses updated. But it was EXACTLY what I needed.  My Ophthalmologist (whom I think the world of) told me this was the time for me to stand up and self advocate for my own health.  You see, my stroke was caused by high blood pressure and high cholesterol.  Neither which I knew I had, even though I had seen MULTIPLE doctors over the years from spring 2015 to the end of 2017.  Turns out, my overall cholesterol was under 200 (that’s normal) but my triglycerides which is a part of your total count was nearly DOUBLE.  The odd thing is my blood pressure had never been really high. Maybe a tad but not over the top hypertensive like it was at the time of my stroke. I checked back to multiple offices and checked all of my BP readings none read the horrible high pressure that I experienced the week of December 10^th and after. I’m now medicated for that and doing well.  I’m also being medicated for the triglycerides, as this is less diet and more genetic.  But I took it upon myself to also work at losing some weight. And as of Thursday, I have lost 27 pounds since my stroke. I’m far from thin, but those pounds are coming off a bit less now than I would like.

I quit exercising in June because frankly I didn’t have the strength to do it. This seemed strange at the time. But I know my body and I listen to it. I was using my C-pap machine (a new one thanks to the awesomeness of the pulmonologist) and I had been doing my stretches and my weight training that my PT had set me up with, however it just seemed like I couldn’t lift my arm let alone a 3lb weight.

Then I started noticing something else around the 4^th of July. I had pain, but not the “I walked 6 miles and damn I hurt” kind of pain. This pain was deep in my bones. It also seemed so very familiar. My shoulder blades hurt.  My cheek bones hurt, as well as my forearms, and let’s not forget the knee pain that sent me to the physical therapist to begin with. It was the kind of pain your grandparents tell you about when it is going to rain, how they ache all over and they know it’s going to rain because they can “feel it in their bones”

So I called my Dr. she ordered a few blood tests with a consult the following week. She noticed my fingernails are dented. Golly, when did I see that before? Ohhhh yea when I was anemic. Tired, dented nails, bone pain, but all those red counts are fine. Oh wait but, my red cells are also very large. Not so large that it flags in the blood work, but large enough they can’t get bigger without flagging. But if I’m iron anemic, my cells would be small… so what’s the deal?  From what the interwebs tell me red cells can also get big if you’re making them SUPER FAST. Hummmmm bone pain…. Fast blood production…

So my Dr knowing I know as much as I do and that I know how to look at stuff other than web MD, she says lets repeat this blood work, and ill add on some and we will check your vitamin levels. Maybe your just needing a supplement. Bless her heart, trying to keep me from worrying. But she blew it as I was walking out of the office. I asked if she wanted me back in three months like normal. She said “you’re getting that drawn on Monday? I’ll read it and we will decide what’s next when I see it. I’ll be in touch”

Whammo.  That means she’s going to call me. That means she’s thinking what I’m thinking, maybe its back and we need to find a way to prove it, before that dragon gets a decent foothold again.

I'm preparing myself for the worst. I’ve fought that dragon before and won. I can do it again if I have to.

Relay for life Honorary Chair

This draft was just found.... It should have been published in July 2017.

I was asked to be this year's honorary chair for relay for life.  I thought I would share my speech.

https://www.facebook.com/kristatorpy/videos/10154452838817820/

HI!

I recently received a letter from a reader that asked how things are with me so i thought i would make a post to let everyone know that i am just fine. my last post was well over a year ago. at relay for life. 

Having a 3 year old certainly keeps me busy! Much busier than i have been in a very long time!

The main thing that has gone on in the last year was my husband and i recommitted our marriage vows. we did this in May. here are some photos from that....

L-R:  Robbie, Michelle Matthew, Whitney, Myself, Steve
Robbie is Michelle's Boyfriend of 2+ years now, Whitney is her Best friend since forever 

Matthew Steve and I
Matt Walked Mommy down the isle

Robbie Played his cello for our music

Michelle made all of the cakes all 100% dairy and soy free
 (yes those are chocolate heart sculptures on the tops)

Matt had some fun with friends

We really just had a lot of fun

I'M sorry i don't get to post anywhere near like i used to. I guess I am spending time doing what i said i was going to do once i beat this damned disease. I'm living! But i will try to get on here more often and keep you all up to date :)

2013 Relay For Life

 This was my third relay for life. 

Relay always brings mixed feelings for me. 

Gratitude that this part of my life is over, 

but also sadness because of those that fought with me are no longer here. 

It does renew my commitment to living everyday, 

and never looking back. 

Many things have changed in the three years since my cancer, 

some good some bad. 

but for the most part I'm still living everyday as if it is my last. 

A precious gift that many people just do not understand.

relay on the track
photo credit Michelle Lawrence

the survivor tents
photo credit Michelle Lawrence

My friend Michelle had her camera and snapped several photos for me.

All of us
photo credit Michelle Lawrence

This year during the survivor walk they did a balloon release.

 I felt that sending a message to my friend Barb would be fitting. 

Barbs balloon

In case you've never gone to a relay for life event, 

the survivor walk is a tradition that is held every year, 

the survivors and the caregivers start on one side of the track, 

the survivors walk with just other survivors in one direction 

the caregivers walk in the opposite direction 

you meet at the opposing side of the track 

then you walk with your caregivers back to the starting point. 

the balloon release
caregiver view

It can be a very solemn time as when you are walking to your caregivers,  

you realize who you may have walked with last year,

 may have lost the fight in the last year. 

it really makes you appreciate the fact that you are still here, 

you are still fighting, 

you are still LIVING. 

the balloon release
Photo Credit Mary Torpy

Then you meet those that you hold so dear, 

those that made you take your treatments, 

those that held your hand when you hurt, 

the ones who would sit through HOURS of treatments 

and never complain about how they may have a kink in their back 

or how LONG the treatments are 

or even how they could have gone shopping during that time that you sat there. 

Those that lied to you 

and told you it was going to be OK 

even though they were so scared they didn't know if it was themselves. 

and you know just how very important they are to you. 

Suddenly it all feels worth it, 

and you know why they still come to these events. 

because that time that was so very inconvenient for them,

 means you get to walk that lap 

ONE MORE TIME.

The whole experience is very moving for me.

Mary (M-I-L) always buys a luminary for me, 

this is the first time i've been at relay late enough to see it out on the field

its quite emotional to see bags and bags of these 

and read the names as you walk the track, 

you see so many that have "in memory of" on the top. 

some bags are very decorated some are plain. 

I happened to see my lawyer's luminary (he passed some time ago) 

and it had been decorated with a striped tie.

My luminary

then at night they light candles in them, 

I've been told that seeing all of them lit is VERY moving. 

looking down on the track and seeing all of the bags lit 

for those that have dealt with this horrible disease is incredible.

hopefully i can stay late enough to see it lit next year. 

As for this year she took a photo of it for me.

My luminary at night
Photo credit Mary Torpy

Steve and I

Mary and I

Michelle and Matthew

Matt walked a mile 

Matt was very fascinated with the track 

hopping on every triangle and number. 

he would go from the first number to the next as the count goes. 

the little trooper walked until we got tired of encouraging him along, 

then daddy went and got the stroller for him.

then he rode a half a mile

My Parent In Laws were on a relay for life team. 

My mother in law walked 24 laps (6 miles) 

My father-in-law told the team to go to bed and did 

ALL OF THE WALKING during the night, 

he did a grand total of 64 LAPS or 16 miles! 

These are the strings of beads they used to keep track 

of how far they have walked. 

My parent in law's beads

 Next year i think i will be ready to walk on their team. 

I personally only did 6 laps, which is 1.5 miles, 

BUT i also managed to run 1/2 of a lap

 i've not done that since high school, 

every year i see improvement in how much i can do.

Steves Dad, Bob, Had these cool light up glasses
I had to try them on before i left

 This is a wretched picture of me, 

but I thought Bob's glasses were so neat!

my tokens

 Every year the cancer society gives us remembrances.  

this is my new keychain and my survivor pin. 

the keychain is really heavy and just what i needed right now. 

three years...

Today marks two anniversaries for me. The first was the day I found my lump that marked the start of my life with cancer. the second anniversary marks  the day that they told me it was gone. 

Its been three years. 

I've had friends come into my life, 

I've had friends walk out of it. 

Ive seen a new life, 

I've seen lives end. 

I've lost family members,

I've gained family members.

I've grown, 

I've learned. 

what exactly do i know now that i didnt know then? 

LIVE LOVE LAUGH

I know i sound like a cheezy "country" phrase

but its the truth I was "getting by" before. Now i experience what my life is right now today!

is life what i expected after cancer? no ... but its so much better.

my advice to the world if i could get the world to listen?

remove toxic people from your life

and enjoy what's left over once they are gone

& don't look back

4 months!

I have been doing dairy free / soy free now for 4 months!  yesterday i made REAL mac and cheese with real milk and real cheese for the first time since the lifestyle change.  I (of course) had something else for Matt and I

I don't know how many other people refuse to step on a scale during the holidays. I am one of those people.  so the  last post that had my weight was the last time i measured it.

I am pleased to announce that in the 100 days since i last stepped on a scale i have lost 14 pounds.

Ive really adapted well to this new diet. I do however miss pizza with cheese, eating in a restaurant, and Subs. yea no subs. but when i think of al the great things i can have and how much better i feel I am so very very glad i did this for myself! 

4 months dairy free
215 lbs

Dairy/Soy free for 30 days

Well other than some HUGE screw ups and some intentional binges. i have been dairy and soy free for 30 days today.  I feel better. I dont have acid reflux anymore i ENJOY my coffee. i actually like milk (well the almond stuff) were i never did before.

i do miss PIZZA. it was one of my favorite foods. and cheese. im still working on substitutions for those foods. hopefully soon i can get to a real city that will carry the subs i need so i can buy a bunch and freeze it.

i tend to miss things fried in butter, but i did popcorn the other night and sprinkled canola on it before salting it and i am really impressed by that.

my weight stabilized  so i doubt any will come off without good old fashioned exercise (darn!) but all in all i am glad that i've decided to do this and i think other than inconveniences like eating at a friends house or out at a restaurant  me and mine have adjusted well to it.

i did have store bought bread and i got a little gassy with it but thankfully no pain. whereas the single slice of pizza kept me up all night.

229 lbs
30 days dairy/soy free

PUMPKINS

My cousin Tesha and i were out with her kids the other day,  and i passed a road side stand i have been meaning to  stop at to get some pumpkins since ours didnt grow....

The prices couldn't be beat although the wind was a bit on the blowy side....

when we got home we all sat down and carved a couple these girls are just as good as gold and they treat Matty like a little brother. and he LOVES to see them come over. they live in the next town over its a bout a 20 min drive so we cant be together every day but our families get together maybe once a week. sometimes we go there some times they come here. its really nice