It's really not poison

Oh good God.
I left two pain pills out for Lee to take in case the kidney stones hurt him while in an at work.
I get home tonight, he's in bed. I go in to talk to him and he says "I didn't take that poison" . After several minutes of me asking him questions he finally says "those two poison pills you left me, you said they were poison so I didn't take them".
I just want to cry for him. I wish I could get through to him all the time.  My heart breaks when he's like this because I can't help him, I can't fix him, I can't make him all better and as a nurse I should be able to.
But I can't fix this. I can't make him better. Instead I climb into bed next to him, after getting his bed time pills together and convincing him they aren't poison. I give him a kiss and I lay here silently crying as he drifts off to sleep and I listen to his slow, even breathing, my heart full of love, but breaking at the hopelessness I feel.
I am a caregiver. I am a wife. I am a nurse.

Life With A Terminal Disease-or how we wait for death

Today a friend and her husband have been married 23 years.
I love seeing things like that. It used to make my heart ache every time I saw something like that. While happy for my friends and family, it still made me realize how short my ever after really will be. Life with terminal diseases sucks, but at the same time is a blessing.
 I know my forever after won't be as long as yours, my parents, my grandparents, and at the worst moments I ask myself "is this it, has my ever after ended today"? Will there be another day for us? Will he remember who I am tomorrow?(there have been recent days that no, he doesn't know me).
 I just take it day by day, and I try to make the most out of every minute  we will have together.
I was talking with my mom this morning about something I want to do, but know I can't until Lee is gone.  Mom  said "well that won't be for another 10-15 years".  Reality is, lewy body dementia prognosis is 5-7 years. The Parkinson's disease and leukemia are an issue, and there's a timer running out on those also. I take it Month to month, day to day, hour to hour, minute to minute, second to second, and count myself as lucky. We know it will end sooner rather than later. We can plan for it, I can plan for my future without him, and we can let ourselves live like today is our last day together.
I encourage everyone to live that way. Its not sick or morbid, its living for now instead of tomorrow because you never know what tomorrow will bring. Live, love, laugh, and make the most out of today.

Life, Death, and how to decide.

Lee told me today he hates taking all these pills and he wants to talk to the doctor about stopping some of them.
 I took out each of his pills and told him what each one is for. I also told him that if he does stop the leukemia medication he would probably die within a few months, and as much as I really do love him and want him around I would support his decision.
 We discussed the parkinsons, and he understands that one really is only helping the tremor be not so bad, and he knows its not a cure and it will get worse eventually. He knows that carbidopa/levodopa doesn't even slow the progression of parkinsons, it just makes it easier to live with the symptoms. He may decide to stop it, I won't make that decision for him.
 The Prozac helps with his anger control, supposedly, I know that the dementia is affecting his moods more and more and Prozac isn't likely doing much.
 The rest he's on... Pantaprazole( think that's it) for reflux, vitamin D, Iron(the leukemia causes anemia, his iron was pretty bad) a multivitamin, seroquel(because the iron doesn't play well with sinimet so he can't take that at bedtime he's on the seroquel to knock him out despite the tremors trying to keep him awake), and hydrocodone(he generally only takes one in the morning when he wakes up, that's when the arthritis in his lower back is the worst), but he can take it up to 4 times a day, tamsulosin for an enlarged prostate,i Gleevec for the CML, and Claritin or zyrtec for year round allergies.
 It looks like a lot in his pill box but I know realistically it's not that much.
 I am very realistic in the outcome, I know he will die sooner rather than later. I know his meds aren't cures and his diseases are terminal. He knows that also. I've never kept the truth from him or downplayed the situation at all. He would make the decision knowing the outcome, and I would be ok with whatever decision he makes. We have actually discussed assisted suicide and he knows there is that option(he's catholic so he has said from the start that's not an option). He and I both don't see stopping his meds as suicide, we see it as allowing nature to take its course.
As much as I love my husband I can't fix him. I wish I could wrap my arms around him a
or wave a magic wand and cure him. I can't though, and I am most certainly aware that he is dying and I will lose my knight in shining armor. I will take every minute I am given though, and cherish every bit of it. Of he does decide to stop the medications we will then discuss hospice.
 I have known for many years that my happily ever after won't be forever after.

down the rabbit hole

Wow! Two in a row, that's like amazing or something! Yay me. Or not.
I think of Alice when she went on her adventure. Down the rabbit hole to a crazy world that can only exist in a world of dreams, or drugs. Eat me, drink me, grow ten feet tall and become invincible, only to shrink and become miniature and able to get lost. A hookah smoking pink cat  with a body and head that seemingly disappear at will, only to reappear in the next thought. Now, who was the one really smoking the pipe?

Then we have The walrus and the carpenter....

"The time has come," the Walrus said,
"To talk of many things:
Of shoes--and ships--and sealing-wax--
Of cabbages--and kings--
And why the sea is boiling hot--
And whether pigs have wings."

I think they make the most sense of any of them, they discuss the important things and don't ignore the elephant in the room. In this case it's cancer, it's polycythemia. The more I read the more I feel like Alice must have.  My head is spinning and I don't know which direction to take. What to eat, what to drink, where to go and what to do. 

I am truly thankful for the support I have around me, the family, friends, co workers. I appreciate the ones that ask me how I am and truly mean it and want to know. I appreciate the ones that see I'm having a mini breakdown and just let it happen. I appreciate the ones that know when I don't need any words and just a hug says it all.

But I am Alice, I will continue on and I will fight through all those little battles that come up, and then I will close myself up in my room and cry as much as I need to before I return to my world of daughter, wife, mom, and nurse.

just keep swimming

So much for my resolution to write regularly. Sometimes life takes a dive and its all you can do to stay afloat.
My kid started fainting. A couple trips to the ER and a couple nights admitted to Neuro and we still don't have many answers as to why. What we do know - she has a small congenital heart defect. A small hole between the upper two chambers it's an atrial septal defect called a patent foramen ovale. What we don't know is why she's fainting. The neurologist said it's small enough she shouldn't have problems from it, and hey, she's had it all her life. 19 years we didn't know.

I have cancer.
A myeloproliferative neoplasm.
Polycythemia Vera Rubra.

It's a slow-growing type of blood cancer in which the bone marrow makes too many red blood cells. Polycythemia vera may also result in production of too many of the other types of blood cells — white blood cells and platelets. These excess cells thicken your blood and cause complications, such as a risk of blood clots or bleeding.(Thanks mayo clinic).

Symptoms

• Itchiness, especially following a warm bath or shower(yes, horribly so)
• Headache(almost daily)uDizziness(yup, always been told its vertigo)
• Weakness(yup, sometimes it just hits out of the blue and I just can't do it)
• Excessive sweating(oh really bad. I've been blaming hot flashes)
• Painful swelling of one joint, often the big toe(nope, I do have bad pain, especially in joints, but not gout)
• Shortness of breath(only on exertion)
• Breathing difficulty when you lie down(possible, likely have sleep apnea to)
• Numbness, tingling, burning or weakness in your hands, feet, arms or legs(usually)
• A feeling of fullness or bloating in your left upper abdomen due to an enlarged spleen(not, however my liver is enlarged and tender)

So I have a lot of symptoms and have awhile.

Life expectancy is 10-20 years. I'm 41.

I'm much higher risk of stroke. 

Life goes on.

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.