Strong for Life, Or how do you do what you do

I often get told I am one strong woman. I don't see myself as such. Here is my response to that statement.

Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids,  hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.

Bad vacations can be good to

• The picture in my profile, this one, shows the man I met and fell in love with. We were happy, both of us relatively healthy. We camped, we hiked, had a wonder filled trip to California that was the most stressful, craziest, amazing trip ever. It was the trip to hell that began with  a broken down RV, car rental places not open on a Saturday, finding a hotel to accommodate us and a 36 ft RV, and a $300 two block tow to the shop. It was a trip of family bonding, sitting in lawn chair for 12 hrs while AAA tried to find a big enough tow truck, counting how many times the same police car drove by and never stopped until the tow truck was there. It was a terrifying brief separation as the second tow truck AAA called just to take me and the kids to a hotel, the wrong one, and A $20 tip to convince the hotel driver to take us to the right hotel, meeting a father and son who were there for boat races and invited us to join their team so we wouldn't have to pay entry fees, and discovering a child had lice.

It was a trip to Alcatraz, walking the switchbacks, exploring the buildings, seeing amazing things. A boat trip back with the island in the background of an American flag flapping wildly.


It was a trip to the Winchester mansion, a walking tour narrated.


It was a trip to a park, sitting in a class about dolphins before my kids donned wetsuits to climb in a pool full of dolphins. Watching them grab the dolphins fun to be pulled around the pool.


It was amazing.


It was our last big family trip, and only one.
The man I married can't do those things anymore. He can't walk through a store anymore. He needs a cane to go from bed to bathroom, when he is able, when not he slides out of bed to kneel on the floor and use a urinal.


Despite it all that was the best trip ever, it was before Parkinsons, before leukemia, before bankruptcy, before all that stole our life.




I don't regret any of it. I cherish every bit of those memories and the trip from hell. I have them to remind me of when things were good.
He would like to go on a cruise. I won't be able to take him on one. I want to stand in Times square and kiss him as the ball drops on New Years eve. I want to take him to Yellowstone. Parkinson's won't let us.
I want to take him away, somewhere we can forget disease, doctors, medication.


I took him to the fair.

the origins of my name

Last Monday I took my two girls and their friend J stargazing. Not just any ordinary let's go look at the stars fomr of stargazing, specifically we went aurora watching. We were not disappointed. It wasn't the all out spectacular stuff you see from the far north, but us being at 49° north it was pretty awesome.
We had been out a couple hours and had only seen an iridium flare, a couple shooting stars, the milkyway in all its absolute glory, and I was ready to head out.
 We decided to head down the freeway a little more to see if there were another point just as dark and easy to get to as the one we were at. Get in the truck, buckle up, get on the freeway and Bekah says "I'm not feeling real good". Had get lay her seat back...and she was out. Passed out. And I'm going 75mph with no place to safely stop. Big sis kept an eye on her while I looked for a stop. Finally got to an exit and pulled off just as she wakes up. I told her it was great timing since we were spotted in front of a fire station.
It was only 3 minutes but when you aren't in a position to help it might as well have been 30 minutes.
We head towards home and got close to the first exit we had been at when I happened to glance out my window. The sky was looking lighter. I asked the kids if it looked lighter to them, took the exit and pulled over in time to see the whole northern sky light up. As much as I loved what I was seeing what I truly enjoyed though was seeing and hearing the excitement from the kids. seeing auroras the first time is almost a spiritual experience.

In other news... I saw the oncologist Wednesday. Instead of things being clearer they are more confusing.
Labs are essentially unchanged, still elevated. He did screening for the JAK2 gene and I am negative. He also checked erythropoetin(EPO). That's the hormone released by the kidneys that regulates red cell production in your bone marrow. If it's low it means it's primary polycythemia, if it's high is secondary. Range is 3-20 or 23, something like that. I'm a 9. Normal. That gives us more questions than answers.
Liver still enlarged, spleen also now slightly enlarged. In about an hour I am going in for a full abdominal ultrasound. They will be checking out live and spleen for sure, as well as everything else. I'm not allowed to eat before. Guess they plan on looking at my stomach also.
So, as of right now game plan is to wait and see what this test and more labs site. No chemo yet, no blood letting. He did say goal is to get my hematocrit down to 40, currently it's bouncing around between 48 & 58. The mystery continues.

Family night

Tonight we had a family movie night, which with teens means they bring a friend and go see a different movie than the parental figures.
The girls and their friend saw Now You See Me. Lee and I saw The Purge.
Very interesting movie, it makes you really think. Lots of social implications.
The kids thought their movie was pretty good to. It's also on my list of want to see movies.
On the way home though... their friend asked if it was ok to smoke in the car. ummm nope. not when you're 16. kids.

On a different subject... Our idiot dog Snickers went after our 17 yr old kitty. Mia wasn't hurt, just had dog drool all over her. I was beyond pissed though. I literally kicked snickers down stairs and into the living room and locked her in there with Lee. There was no reason at all for it. Mia was laying there doing nothing at all. Mia literally sleeps 20 hours a day, and lays around the rest of the time. I swear if that stupid dog hurts Mia I will kill her. I don't know if its jealousy because Mia sleeps on Lees lap most of the day or what. I'm just sick of this dog sometimes. Several times she's snarled and snapped at me, and thankfully missed, because the first time she makes contact she is gone. I already want her gone because that is not acceptable at all, but Lee has an attachment to her.

And to end with some awesome news...the credit union is mailing the title to the PT cruiser tomorrow! It's paid off and all ours! Now just two more years before my SUV is paid off. It was down to 16 months, but we refinanced for 2 years, lower payments and overall paying less. Like payments almost half of what they were before.

Life as We know it

This ones harder to write, and encompasses a lot of feelings and emotions.
It's about my husband Lee.
We met about 7 years ago. Our first date we arranged to meet at Hammers coffee in the mall.
We sat and talked for hours. Before we knew it they were closing up and telling us it was time to go.  It felt so right. I felt like I had known him forever. I was in love, but because of my past history I wouldn't accept it.
We started dating and grew closer and closer.
After about five years we moved in together.
We had so much fun. Hiking, camping, vacations, day trips, hockey games, watching movies, and just being together.
Then Thanksgiving happened. Lee got a really bad cold. He got up at 4 am, got dizzy, fell and hit his head pretty hard. I kept an eye on him and in the morning took him to urgent care.  He had a sinus infection pretty bad, and they did a CT scan just to make sure everything was ok.
They told us there was something there but they weren't quite sure what but it was probably just an artifact and to follow up with his doctor.
We did a week later. He ordered an MRI, and discovered this thing, probably an artifact was a brain aneurysm.
Thus started a whole string of events , doctors, surgeries and hospital stays.
The first surgery was a full craniotomy, where they opened up his skull and proceeded from there. The aneurysm was sitting on the optic nerve. He was slowly losing vision in that eye and we hadn't noticed.
Once in they discovered the aneurysm was to close to the sinus cavity to safely clip it, however, they were able to move it which left him a candidate for a 2nd type of procedure called a coiling, where they insert a wire, break it off and the body forms a clot around it sealing it off so it will never rupture. The 2nd procedure was a success.
The first surgery though, it left him in a wheelchair, unable to walk more than a couple steps without falling.
It left him dependent on me and the multitude of therapists and nurses that were in and out of our home every day.
He learned to walk with a cane and now manages that pretty well, though on occasion needs his wheelchair.

A few weeks after the second procedure he was diagnosed with Parkinsons disease. We suspected this so it really wasn't much of a shock. He got on meds, the tremors stabilized, and life goes on right?
We decided to get married a couple months later. July we got married in a simple, sweet ceremony with all our family around. It was wonderful and life felt perfect.
Just a few short months after our perfect day we get a call from Lees internist. His white blood count was up and could he come in for a repeat tomorrow as well as some other tests. I remember that day. His WBC was 12,000. Normal is 4-10000. Only a little up, but they wanted to make sure there was no infection. He had a urinalysis done as well as a chest xray and blood cultures.
A week later the tests were back, and all negative. No sign of infection anywhere, and a WBC that was now in the 20s.
 Off to a hemotologist/oncologist for a consult.
One bone marrow biopsy and a few weeks later we got the results. the big C. Cancer. that evil and most unholy word ever. He is Philadelphia  and BRCA1 positive, both considered positive results for chronic myelogenous leukemia.  All I heard was leukemia.
we went back to the waiting room for some more tests they wanted to do. While waiting I stepped out into the hallway and called work to take the night off. I needed a night because I was ready to have a break down in a bad way.
 That is how we got to where we are today.

I know thats long for background, but it's important.
It hit me bad. Yes Lee is a lot older than me, that's never been an issue. I knew the odds are that I would outlive him, simply because he is 29 yrs older than me. Then in one year he was given two terminal diagnoses.
The world slammed to a screaming stop for me, but I could still see it going on around me.
I wanted to get mad. I wanted to scream and yell and tell everyone to stop because it was over.

I couldn't though, because as life has taught us Life MUST go on.

I'm a nurse. I take care of kids that shouldn't have been alive. Kids that were given a few months, maybe a couple years to survive. I take care of kids that gave their doctors a big FU and lived. Not just survived, but LIVED.
Going to work while all this was going on with Lee gave me a little hope.
A little sunshine in a dark world.
Kids who don't know the meaning of "you aren't supposed to be able to do that" showing me that no matter what happens it's ok somehow.
The few hours a day I spend with these families have taught me that doctors don't always know it all, and to never give up looking, hoping, and praying.
The families that inspire me for the simple reason that they never gave up.
So many times in life it's so easy to sit back and look at the big bad broad picture. It's so easy to get wrapped up in the why us mood. Its so easy to be selfish and forget that there are others out there with problems....but then when you sit and play with a toddler it's all in perspective... the big picture becomes small and you learn quickly that if you have the wrong teddy bear at bedtime the world will end.
And you eventually realize that yes, Life will go on.