Have I mentioned recently that I love my job? They offered to change my shift to a mid shift instead of closing. The hours won't be much different, I will go in 30-60 mins earlier than I do now, and get off 30-60 mins earlier. They said it will give me more help and support and it will help keep me from getting overwhelmed and over tired. As it is now after 5:30 or 6:30 I am on my own. At times it can be overwhelming, and certainly exhausting, but I make it through. I really do see the benefits of switching. On the down side I work with a wonderful closing crew. I guess it won't be much different and I will still work with them, I will just get off earlier.
Now, let's discuss life changes.
Gym. I love going, I've lost weight and my endurance in the cardio is a lot better.
My target heart rate is 157. Doc said keep it 140 or below. Weights, he said no there to, not until my hct(hematocrit) is down, target goal is 40, last labs 49.9.
So I'm now limited to the bike and pool. Boring.
I'm anxious for my appointment on the 8th.
I'm anxious in general.
I'm such a serious planner over things and right now I feel we have no solid game plan and I have no direction.
I need answers.
Sunday, June 28, 2015
Another edition of what we know
Time for another edition of what we know, what we don't know.
We know I don't have breast cancer, first ever mammogram was normal.
We know my labs are pretty much the same, increased, steady, but not massively increased. Wbcs were a couple points higher, but not significant.
We know I am JAK2 negative.
We know my erythropoeitin is 9, normal range is 4-24.
We know my liver is enlarged, 10-12.5cm is one of the normal measurements, mine is 19.4cm. Yes, my liver hurts. I blamed it on gallbladder.
Seems like an awful lot of we knows for the ultimate we don't know.
We don't know the cause.
Two other docs have reviewed labs and are in agreement it's PV,
What they don't know is the why.
Apparently I'm not going into that nice little cookie cutter mode they expect of me.
A new word for today...myeloproliferative neoplasms.
We know I don't have breast cancer, first ever mammogram was normal.
We know my labs are pretty much the same, increased, steady, but not massively increased. Wbcs were a couple points higher, but not significant.
We know I am JAK2 negative.
We know my erythropoeitin is 9, normal range is 4-24.
We know my liver is enlarged, 10-12.5cm is one of the normal measurements, mine is 19.4cm. Yes, my liver hurts. I blamed it on gallbladder.
Seems like an awful lot of we knows for the ultimate we don't know.
We don't know the cause.
Two other docs have reviewed labs and are in agreement it's PV,
What they don't know is the why.
Apparently I'm not going into that nice little cookie cutter mode they expect of me.
A new word for today...myeloproliferative neoplasms.
Myeloproliferative neoplasms (MPN) are a group of diseases that affect blood-cell formation. In all forms of MPN, a bone marrow problem leads to increased levels of blood cells circulating in the bloodstream.
- “Myelo” refers to bone marrow, which is the body’s blood-cell factory.
- “Proliferative” refers to the rapid growth and production of cells.
- “Myeloproliferative” means increased growth and production of bone marrow and blood cells.
- “Neoplasm” means an abnormal growth of cells.
Friday, June 26, 2015
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.
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.
Sunday, June 21, 2015
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.
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.
Friday, June 19, 2015
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.
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
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.
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