Life is a terminal disease

"Life is a terminal disease". A nursing instructor said that my first year of school. A terminal disease is one that will end your life eventually. Everyone dies, just some people sooner rather than later.
When you are told you have a disease that will kill you eventually, probably, how do you respond? How do you react? What do you say to others? How do you go on? Do you lock yourself in your room and have a good cry? Do you pretend everything is normal and good? What do you tell your kids, husband, parents? Do you pretend to be ok when you really are falling apart inside?
There is no answer. You just do it.
You do what feels right.
You get up everyday, get dressed, go to work, go shopping, to the gym. You just keep going.
You want to give in, to give up, to not break down, you don't want to get out of bed. But you have to, because life goes on, with you there or not.
Eventually you get to the point where you are doing more than just functioning, more than just going through the steps, you start to live again. But life is different now and you are living a new normal. You go on day to day, week to week, month to month. Life becomes a schedule of tests and procedures, of doctors appointment. You plan around them and you learn to live life a new way.
You have to live it, because life goes on, despite being a terminal disease.

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.

and life goes on and begins again

life has been crazy but I have a resolution to start writing regularly.
so, what's been going on since I last wrote... Not much canning. Baking and cooking yes, and I will gladly share an abysmal failure... Croissants.
I've made them before and they turned out amazing. Just absolutely amazing. Not this time though. They were flat.
seriously flat. They started to rise then boom. Flat. Flatter than a pancake.
Flat.
I don't know what I did to them but there is no way you can call them croissants.
For some reason its not letting me post a pic. Oh well, I tried to share.
since last post we've had a few pretty big things going on.
Bekah moved out, clear to SC. Things didn't work out so she moved home. I missed her and am glad she's home.
Lee had another episode of serious confusion and ended up in the hospital 11 days, then a nursing home for rehab for 11 days. He's much better but still not 100%.
His leukemia is in remission, as far as remission goes for CML. He's having good response to the meds and last genetic testing only showed .0002% of the defective gene causing the leukemia. That is considered remission. We are thrilled. He still has to take chemo meds daily, at least it has minimal side effects.
on to the biggest news yet. I got a new job.
as much as I loved the old one insurance changes made it impossible for me to stay for health reasons.
My new job is AWESOME. I work at a plasma donation center. I do physicals and take care of donor reactions, things like that. It's very busy at times, but that makes the day go fast.
The really negative side of my job is when I tell donors their viral tests came back positive(hep b, c and HIV mainly). It sucks to have to tell someone that.

We finally had the appointment for Lee to be evaluated for the DBS. He is not a candidate at this time. That is great news, yet still depressing. It means his Parkinson's isn't bad enough, but it now means back to playing with meds, increasing doses, and trying to get it just right. I have no doubt if they had seen him before his hospital trip in November he would be a candidate. One of the guidelines used is the dyskinesia, he was severe then with minimal relief from the meds. During the hospital stay they cut everything off, which decreased the dyskinesia, but worsened tremors.
Anyway...this doctor confirmed, for the third time, that he has a double whammy. He has an essential tremor on top of the Parkinson's.  Essential tremors are harmless, genetic in nature, and irritating. DBS is also used for the ET. They just use different target areas in the brain.
Surgery for this has not been ruled out. She is going to run it across a couple colleagues and get their input. As of right now the neurologist knows of no other case like this having the DBS surgery for either one. They don't know what would happen, what the side effects would possibly be... how surgery for the essential tremor would affect the PD. So, if accepted for it he will be followed by a panel of docs art OHSU and the Portland VA.
 On to new adventures...maybe...

Fun in yogurt land with a side of sourdough starter

And back in the land of food fun...
Tonight I put a sourdough start out. I used wheat we ground and filtered water. Starting at the second feeding I will use whole milk, minimally processed. I'm really excited for it. I love watching it grow, bubbling, becoming alive.

Tonight's second project is homemade yogurt.

                                           First step - heat milk in jars to about 185f

                                                 (or until a skin forms on the top)

Step two - cool to 110-120f

Step three- culture(live culture yogurt in this case) added

Step four - into the ice chest to incubate.

Many people fill the chest most of the way up the side of the jar with warm water, I used a hot pack and tucked a towel around the jars on top, slid the thermometer in, and closed it up. Twelve hours or so and we will have live culture unflavored yogurt.

You can flavor it with vanilla, fruit, honey...just about anything. I plan on doing one jar with strawberries, one with blackberries, and the third...haven't decided.

So, I will admit this my first attempt at making yogurt, so we will see how it turns out.

Apple Jelly part deux

Its been 2 weeks since the last apple jelly debacle. I learned that despite it not setting it is still safe, but I can reprocess it and try more pectin. So...which route did I go.... apple syrup...or apple jelly... Of course it would just be boring and bland if I did nothing and let it stay as syrup.
So, in a final attempt at corralling the elusive apple jelly I opened all the jars and dumped them all in a pot. Return to a boil, turn temp down. In a separate pot add the powdered pectin and water( the amount I can not remember at this point).  Bring that to a boil for a bunch of minutes and add to the jelly goo, then can per directions.
I took them out of the pot at the prescribed time...ping ping ping ping over and over. So then the wait begins. Overnight they sat on the counter and in the morning...2 weren't solid. and 5...well....they were interesting.   Globs of gelatinous goo floating like a globe in the middle of an Amber sky.
The center set, the outside is liquid. So once again Apple jelly eludes me.