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.
Thursday, December 31, 2015
Wednesday, December 9, 2015
Respect comes in all shapes and sizes
Life takes us on adventures. Some we plan, some we fall into, some that find us.
Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.
We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.
That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.
Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.
We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.
That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.
Tuesday, December 1, 2015
The many faces of Parkinson's disease
You can see the progression in pictures. They aren't in any order except the first one, that's a couple years before Parkinson's began taking him away.
My cynical life
I hate doctors. Each time I take Lee to one they point out something I should have seen. Something that shows a progression of the Parkinsons. I live with him. I'm with him every day. I see what's happening. Yet I don't really see it.
It took a doctor today, a urologist at that, to point out how Lee is standing up from a chair. How he is leaning far forward, which is a high risk for a fall. He's already a high fall risk, and knock on wood... It's been a couple months since he has fallen.
I hate that I have to work, I wish I could stay home with him. If I could then we could have our own place. But he can't be alone 9+ hours a day, so we live with my parents.
I am really in need of a little vacation. Bekah and I want to plan a no plan drive east vacation. Just get in the car and drive until we get where we are going, which is to say... Nowhere. No plans, just pack and go.
I'm now realizing I probably won't be able to do that. We talked about trying to reserve the fire look out again and just me and her going. I don't know if that will happen either.
Parkinson's sucks. Bad.
It took a doctor today, a urologist at that, to point out how Lee is standing up from a chair. How he is leaning far forward, which is a high risk for a fall. He's already a high fall risk, and knock on wood... It's been a couple months since he has fallen.
I hate that I have to work, I wish I could stay home with him. If I could then we could have our own place. But he can't be alone 9+ hours a day, so we live with my parents.
I am really in need of a little vacation. Bekah and I want to plan a no plan drive east vacation. Just get in the car and drive until we get where we are going, which is to say... Nowhere. No plans, just pack and go.
I'm now realizing I probably won't be able to do that. We talked about trying to reserve the fire look out again and just me and her going. I don't know if that will happen either.
Parkinson's sucks. Bad.
Wednesday, November 25, 2015
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 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.
Thursday, October 1, 2015
The state of Life and things to be
8 years ago I met my soul mate. Our first date we sat in a coffee shop for 3 hours, until they closed and kicked us out. We knew from the start we were meant to be.
After three years of dating we decided to move in together and life was wonderful.
November 2010 that changed forever. He woke up at 4 am to use the restroom, got dizzy, fell, hit his head on the wall and passed out. He had a cold and he thought it was just from the congestion. I don't know the order of things, he may have passed out then hit his head, things happened and he doesn't remember it all. Being a nurse I kept an eye on him and when he was up and functioning I took him to urgent care. They did a CT scan and told us there was "something", probably an artifact, but we needed to follow up with his GP. At the GP they did an MRI and promptly sent us to a neurosurgeon. They had discovered a berry aneurysm. The aneurysm was sitting on his optic nerve and he was losing vision in that eye.
We made the decision to have it repaired and not risk it rupturing. That was the worst decision we made.
In Feb 2011 he went into a 12 hour surgery. They were unable to repair the aneurysm but were able to move it off the optic nerve so he was a candidate for a coiling procedure.
He spent almost a week on the neurology floor. They had PT, OT, and ST working with him. He was unable to walk. After 6 days they sent him home in a wheelchair with a cane. He fell the next day trying to walk. Back to the hospital, he bent the titanium plate in his skull, but was fine they told me.
Over the next few days he got worse and worse. He started hallucinating badly. I took him back to the ER and fought with the doctor. He saw nothing wrong. Every time he was in the room Lee was ok, oriented kind of. Then a nurse was in there when he started in again. He convinced the doctor Lee needed to stay and that it was not a psych issue but it was a medical issue. They figured out he was having a reaction to the steroids they gave him to prevent brain swelling. He was there another week and came home stable.
Months of therapy and he was then able to use just a cane 100% of the time.
I need to back up a little and talk about the tremors. He has an essential tremor. They aren't a big deal and don't cause death. He's had it 30+ years and his daughter also has it.
After his surgery, during a follow up his surgeon said the magic words "have you ever been checked for Parkinson's disease(PD)". Off to another doc, on to a new diagnosis and medication.
Life went on and we decided to get married. On July 24 2011 I married the man of my heart. Despite the complications life had thrown us we were very much in love. He is 29 years older than me, a Vietnam vet, but when we met he was much younger. I never would have thought he was his age if I had just met him on the street. Before the aneurysm we traveled, camped and hiked. We were active and lived life. PD changed that, slowly but surely.
Fall comes, it's almost a year since they discovered the aneurysm. Lee goes in for a routine physical.
It ended up not so routine.
It ended up a journey of more lab tests, more doctors, New words added to our medical vocabulary like bone marrow biopsy, chronic myelogenous leukemia(CML), and a doctor telling us it's incurable, but slow progressing. "Something else is likely to kill him before the leukemia".
I can live with that. I have him for a long time still right?
2013 November. I am at work and my parents call me. I hear words I don't want to. We are at the VA ER with your husband and they doctor said you need to get here immediately.
I got there within 30 mins. He was having severe dyskinesia and was very confused. They did labs, scans and I don't remember what else, but we weren't there long when they told us an ambulance is on its way and they are taking him to sacred heart for a direct admit to the ICU. He was in acute renal failure, metabolic acidosis and his white count was very high. When he got to the hospital he was unresponsive except to painful stimuli.
They kept him in icu only one night before moving him to the Neuro floor. During that time he was still unresponsive except for a grimace to painful stimuli, never woke up, never talked to me. After a week they sent a palliative care doctor to speak with me. His daughter was there and we discussed it with his son and the rest of his family, even those not local, despite them being far they are family and mean a lot to my husband. With their consent I made the very hard decision to place him on hospice care. 30 mins later I left, his daughter stayed with him. I had been gone 30 mins when I got a call "Jen, dad's awake and wants to talk to you".
He was fine. Weak but fine.
He spent another week in for therapy. We left with a diagnosis of Lewy body dementia, as well as the acute renal failure and acidosis.
We have had another incident similar to that, not near as serious though.
He keeps getting weaker and more confused.
I don't believe it's Lewy body dementia and neither does his PT. It's something we will address at his next Neuro appointment.
This first pic was early in our dating years. We were at the lake and had been boating and tubing. It was awesome and one of my favorite memories of us that I'm sharing with you.
After three years of dating we decided to move in together and life was wonderful.
November 2010 that changed forever. He woke up at 4 am to use the restroom, got dizzy, fell, hit his head on the wall and passed out. He had a cold and he thought it was just from the congestion. I don't know the order of things, he may have passed out then hit his head, things happened and he doesn't remember it all. Being a nurse I kept an eye on him and when he was up and functioning I took him to urgent care. They did a CT scan and told us there was "something", probably an artifact, but we needed to follow up with his GP. At the GP they did an MRI and promptly sent us to a neurosurgeon. They had discovered a berry aneurysm. The aneurysm was sitting on his optic nerve and he was losing vision in that eye.
We made the decision to have it repaired and not risk it rupturing. That was the worst decision we made.
In Feb 2011 he went into a 12 hour surgery. They were unable to repair the aneurysm but were able to move it off the optic nerve so he was a candidate for a coiling procedure.
He spent almost a week on the neurology floor. They had PT, OT, and ST working with him. He was unable to walk. After 6 days they sent him home in a wheelchair with a cane. He fell the next day trying to walk. Back to the hospital, he bent the titanium plate in his skull, but was fine they told me.
Over the next few days he got worse and worse. He started hallucinating badly. I took him back to the ER and fought with the doctor. He saw nothing wrong. Every time he was in the room Lee was ok, oriented kind of. Then a nurse was in there when he started in again. He convinced the doctor Lee needed to stay and that it was not a psych issue but it was a medical issue. They figured out he was having a reaction to the steroids they gave him to prevent brain swelling. He was there another week and came home stable.
Months of therapy and he was then able to use just a cane 100% of the time.
I need to back up a little and talk about the tremors. He has an essential tremor. They aren't a big deal and don't cause death. He's had it 30+ years and his daughter also has it.
After his surgery, during a follow up his surgeon said the magic words "have you ever been checked for Parkinson's disease(PD)". Off to another doc, on to a new diagnosis and medication.
Life went on and we decided to get married. On July 24 2011 I married the man of my heart. Despite the complications life had thrown us we were very much in love. He is 29 years older than me, a Vietnam vet, but when we met he was much younger. I never would have thought he was his age if I had just met him on the street. Before the aneurysm we traveled, camped and hiked. We were active and lived life. PD changed that, slowly but surely.
Fall comes, it's almost a year since they discovered the aneurysm. Lee goes in for a routine physical.
It ended up not so routine.
It ended up a journey of more lab tests, more doctors, New words added to our medical vocabulary like bone marrow biopsy, chronic myelogenous leukemia(CML), and a doctor telling us it's incurable, but slow progressing. "Something else is likely to kill him before the leukemia".
I can live with that. I have him for a long time still right?
2013 November. I am at work and my parents call me. I hear words I don't want to. We are at the VA ER with your husband and they doctor said you need to get here immediately.
I got there within 30 mins. He was having severe dyskinesia and was very confused. They did labs, scans and I don't remember what else, but we weren't there long when they told us an ambulance is on its way and they are taking him to sacred heart for a direct admit to the ICU. He was in acute renal failure, metabolic acidosis and his white count was very high. When he got to the hospital he was unresponsive except to painful stimuli.
They kept him in icu only one night before moving him to the Neuro floor. During that time he was still unresponsive except for a grimace to painful stimuli, never woke up, never talked to me. After a week they sent a palliative care doctor to speak with me. His daughter was there and we discussed it with his son and the rest of his family, even those not local, despite them being far they are family and mean a lot to my husband. With their consent I made the very hard decision to place him on hospice care. 30 mins later I left, his daughter stayed with him. I had been gone 30 mins when I got a call "Jen, dad's awake and wants to talk to you".
He was fine. Weak but fine.
He spent another week in for therapy. We left with a diagnosis of Lewy body dementia, as well as the acute renal failure and acidosis.
We have had another incident similar to that, not near as serious though.
He keeps getting weaker and more confused.
I don't believe it's Lewy body dementia and neither does his PT. It's something we will address at his next Neuro appointment.
This first pic was early in our dating years. We were at the lake and had been boating and tubing. It was awesome and one of my favorite memories of us that I'm sharing with you.
This next one was last month.
Tuesday, September 22, 2015
All's fair in love and war....and cake.
Life on the home front has been fairly quiet. Work, doctors, and all the good stuff.
We still don't know what's going on with Bekah, she's had a 30 day heart monitor on and with only two days left to go she has only passed out once. Passing out only once in 30 days is great, compared to where she was, but it's just less data for the monitor to get. Hopefully it's enough.
Kim had started back to school. There are some issues on the school and with financial aid, but it's not just Kim, it affects all students and even staff. So far she seems to be enjoying herself in her chosen classes.
Lee is stable in his leukemia. There has been no progression and he remains in remission, as far as CML goes. His Parkinson's disease is progressing, slowly, but as expected with such a disease.
Today he asked me to take him to the Parkinson's resource center. I was shocked because he's not a social person and usually doesn't want to do anything like that. They have us a booklet they put together, Parkinson's 101, a schedule of activities and a pamphlet about some of the activities. They were getting ready to start one of their regular groups, the Tremble Cleffs. It's a singing performance group. It's run by the EWU speech therapy instructors and students. During helps Parkinson's patients learn how to project their voice and speak up. Parkinson's patients speak very softly and are hard to hear, singing helps with that.
We were invited to stay and watch or to participate, you don't have to sing well, or have any ability at all even. We decided we would watch awhile and pretty soon we were kind of sucked in and were participating. We actually had fun, both of us. I foresee us going back to that.
They also have a dance program. You don't have to be able to dance, or even walk to participate. That's on Saturday's though so I would have to request time off... the great thing though is that caregivers or spouses are welcome to participate in most things with the PD person.
They also have a caregivers group that she suggested I look into, it meets during one of the voice/singing groups.
I am seeing more and more declines in him, despite not wanting to see them and trying not to. All these things the lady at the PRC said today hit home, and several times I wanted to cry. She talked about the voice/speaking/swallow issues, the mood and anger issues that often go with PD, the dementia, a lot of things we have been and are experiencing. The last few days have been more of his down days than up.
It was a productive day overall and pretty enjoyable though.
We still don't know what's going on with Bekah, she's had a 30 day heart monitor on and with only two days left to go she has only passed out once. Passing out only once in 30 days is great, compared to where she was, but it's just less data for the monitor to get. Hopefully it's enough.
Kim had started back to school. There are some issues on the school and with financial aid, but it's not just Kim, it affects all students and even staff. So far she seems to be enjoying herself in her chosen classes.
Lee is stable in his leukemia. There has been no progression and he remains in remission, as far as CML goes. His Parkinson's disease is progressing, slowly, but as expected with such a disease.
Today he asked me to take him to the Parkinson's resource center. I was shocked because he's not a social person and usually doesn't want to do anything like that. They have us a booklet they put together, Parkinson's 101, a schedule of activities and a pamphlet about some of the activities. They were getting ready to start one of their regular groups, the Tremble Cleffs. It's a singing performance group. It's run by the EWU speech therapy instructors and students. During helps Parkinson's patients learn how to project their voice and speak up. Parkinson's patients speak very softly and are hard to hear, singing helps with that.
We were invited to stay and watch or to participate, you don't have to sing well, or have any ability at all even. We decided we would watch awhile and pretty soon we were kind of sucked in and were participating. We actually had fun, both of us. I foresee us going back to that.
They also have a dance program. You don't have to be able to dance, or even walk to participate. That's on Saturday's though so I would have to request time off... the great thing though is that caregivers or spouses are welcome to participate in most things with the PD person.
They also have a caregivers group that she suggested I look into, it meets during one of the voice/singing groups.
I am seeing more and more declines in him, despite not wanting to see them and trying not to. All these things the lady at the PRC said today hit home, and several times I wanted to cry. She talked about the voice/speaking/swallow issues, the mood and anger issues that often go with PD, the dementia, a lot of things we have been and are experiencing. The last few days have been more of his down days than up.
It was a productive day overall and pretty enjoyable though.
Tuesday, July 21, 2015
why or where, life with chronic pain
I have let mood dictate my recent lack of communication, but tonight it's on.
Not much has really been going on. Lee is doing well, kids are great, and I'm doing relatively ok on the blood issue. I'm not doing ok on the pain issue though.
I always hesitate to talk about pain. It's not observable unless there's a visible cause, broken bone, impaled by a pole type of visible. It's a hidden curse. You can say I hurt, but the next question is always "why", followed by "where". The why is the diagnosis the doctor gives. The where...it all depends. My pain is known as chronic pain syndrome. I am a prisoner and my number is 338.4.
Recently we had to make a major change to my pain management program. We went in a direction I never wanted to go in. It had to be done though because of my liver. With it being enlarged anything with Tylenol is now off the table. I'm now on a long acting with the same drug in a short acting form for break through pain. My doctor suggested this about a year ago(well before we knew of the liver issue), but I was hesitant and declined. I felt then that if I went for the stronger drugs it would mean I failed, that I was getting worse, and then there was also the mindset that only fakers that are addicted to narcotics and need their high use these drugs. I refused to risk that type of addiction, though after 4 years on any opiod narcotic 3-5 times a day every day there is going to be some amount of physical addiction.
I got the new prescription and turned it in to the pharmacy. Then I cried all the way home. I feel like I'm starting over again, I really do feel like I failed, though I really have no option any more.
Life goes on and you learn to live with pain. And you learn to hide the pain, and that you are on these medications.
Not much has really been going on. Lee is doing well, kids are great, and I'm doing relatively ok on the blood issue. I'm not doing ok on the pain issue though.
I always hesitate to talk about pain. It's not observable unless there's a visible cause, broken bone, impaled by a pole type of visible. It's a hidden curse. You can say I hurt, but the next question is always "why", followed by "where". The why is the diagnosis the doctor gives. The where...it all depends. My pain is known as chronic pain syndrome. I am a prisoner and my number is 338.4.
Recently we had to make a major change to my pain management program. We went in a direction I never wanted to go in. It had to be done though because of my liver. With it being enlarged anything with Tylenol is now off the table. I'm now on a long acting with the same drug in a short acting form for break through pain. My doctor suggested this about a year ago(well before we knew of the liver issue), but I was hesitant and declined. I felt then that if I went for the stronger drugs it would mean I failed, that I was getting worse, and then there was also the mindset that only fakers that are addicted to narcotics and need their high use these drugs. I refused to risk that type of addiction, though after 4 years on any opiod narcotic 3-5 times a day every day there is going to be some amount of physical addiction.
I got the new prescription and turned it in to the pharmacy. Then I cried all the way home. I feel like I'm starting over again, I really do feel like I failed, though I really have no option any more.
Life goes on and you learn to live with pain. And you learn to hide the pain, and that you are on these medications.
Wednesday, July 8, 2015
I'm starting to hate doctors
I've spent a lot of time pondering my appointment today. I still continue to confuse, but what else can you expect from me.
Basically what it comes down to is I have polycythemia, but it doesn't meet guidelines for primary or for secondary.
Hematocrit, hemoglobin, white and red counts, and neutrophils are still high. Those 5 are all above the number to be considered as positive for polycythemia.
I'm JAK2 negative, which a positive would be 100% definitive for PV, but 5% of people with PV are JAK -.
My erythropoeitin(EPO) levels are solidly in the normal range. Low would be a pretty solid indicator of primary PV, high is a definite for secondary.
My iron levels are fine.
Red cell mass is normal.
My liver is fairly enlarged with fatty infiltrates.
My spleen is slightly enlarged.
Kidneys and gallbladder are perfect.
No tumors or abnormalities on the ultrasound.
We discussed doing a bone marrow biopsy but we have decided against that for now. Mainly because my labs are stable. For five years they have been slightly elevated. They have never been massively elevated. With that stability, the EPO and JAK2 being negative my doctor doesn't feel there is a need to rush into more testing or treatment at this time.
Basically what it comes down to is I have polycythemia, but it doesn't meet guidelines for primary or for secondary.
Hematocrit, hemoglobin, white and red counts, and neutrophils are still high. Those 5 are all above the number to be considered as positive for polycythemia.
I'm JAK2 negative, which a positive would be 100% definitive for PV, but 5% of people with PV are JAK -.
My erythropoeitin(EPO) levels are solidly in the normal range. Low would be a pretty solid indicator of primary PV, high is a definite for secondary.
My iron levels are fine.
Red cell mass is normal.
My liver is fairly enlarged with fatty infiltrates.
My spleen is slightly enlarged.
Kidneys and gallbladder are perfect.
No tumors or abnormalities on the ultrasound.
We discussed doing a bone marrow biopsy but we have decided against that for now. Mainly because my labs are stable. For five years they have been slightly elevated. They have never been massively elevated. With that stability, the EPO and JAK2 being negative my doctor doesn't feel there is a need to rush into more testing or treatment at this time.
Tuesday, July 7, 2015
anxiety can climb ladders
Tomorrow is the next oncology appointment. The closer it gets the more anxious I become. Good thing I have a lot to do to keep me busy today.
I don't know if I am noticing things more, or if they are really in my head. Symptoms mainly.
Exhaustion, I know I'm always tired, but sometimes it just hits out of the blue and I have to stop what I'm doing. It's been this way for a long time, but now I notice it more. You would think with all these extra oxygen carrying red cells it wouldn't hit that hard.
Pain, especially abdominal. Liver especially, but I've also been having more on the left side. Admittedly I've had periodic pain there, always blamed it on gas before but now I wonder if it really is my spleen. The right side pain I'm confident is my liver, especially after the doc poked at it and I was ready to hit him it hurt so bad.
Joints, yes I've had pain there for awhile. Pain doc says fibromyalgia, onc says PV. I say I just and pain meds don't always help.
Speaking of pain... My pain doc did a PROOVE genetic test to see what drugs I metabolize slow(meaning they won't work well for me) and what will work best for me. It found I metabolize hydrocodone slow, which is what I'm on. She offered to switch me to one that I metabolize normally. The issue there is the ones on that list I can take are strong. Morphine, dilaudid, fentanyl...oxycodone is on that list but I had a big issue last time I tried it, I was sicker than a dog. It may have partly been from the migraine or spinal tap they did, but I was super sick and afraid to try it again. So, hydrocodone works enough right now. I realize I will never be out of pain but if it keeps me functioning enough to work then I'm ok with that.
Another issue with the hydrocodone is the Tylenol in it. I don't take a lot but even that may be too much for my liver. I had an abdominal ultrasound 11 days ago, I get results tomorrow. After that we will decide next route.
The PROOVE test also showed some chemo drugs I won't respond well to. I'll be giving my other docs a copy of the results.
So that's all folks. Time to get cleaning, appraiser is coming Thursday and gotta get the basement ready.
I don't know if I am noticing things more, or if they are really in my head. Symptoms mainly.
Exhaustion, I know I'm always tired, but sometimes it just hits out of the blue and I have to stop what I'm doing. It's been this way for a long time, but now I notice it more. You would think with all these extra oxygen carrying red cells it wouldn't hit that hard.
Pain, especially abdominal. Liver especially, but I've also been having more on the left side. Admittedly I've had periodic pain there, always blamed it on gas before but now I wonder if it really is my spleen. The right side pain I'm confident is my liver, especially after the doc poked at it and I was ready to hit him it hurt so bad.
Joints, yes I've had pain there for awhile. Pain doc says fibromyalgia, onc says PV. I say I just and pain meds don't always help.
Speaking of pain... My pain doc did a PROOVE genetic test to see what drugs I metabolize slow(meaning they won't work well for me) and what will work best for me. It found I metabolize hydrocodone slow, which is what I'm on. She offered to switch me to one that I metabolize normally. The issue there is the ones on that list I can take are strong. Morphine, dilaudid, fentanyl...oxycodone is on that list but I had a big issue last time I tried it, I was sicker than a dog. It may have partly been from the migraine or spinal tap they did, but I was super sick and afraid to try it again. So, hydrocodone works enough right now. I realize I will never be out of pain but if it keeps me functioning enough to work then I'm ok with that.
Another issue with the hydrocodone is the Tylenol in it. I don't take a lot but even that may be too much for my liver. I had an abdominal ultrasound 11 days ago, I get results tomorrow. After that we will decide next route.
The PROOVE test also showed some chemo drugs I won't respond well to. I'll be giving my other docs a copy of the results.
So that's all folks. Time to get cleaning, appraiser is coming Thursday and gotta get the basement ready.
Sunday, July 5, 2015
Life takes a dump
I'm depressed. I can finally really truly and honestly say that.
Majority of the time I am alone I spend in tears.
It's been three weeks now, or is it four? Each day is just blending into the next and I am just going through the motions and doing what's expected of me, and even then I fear messing up or disappointing. I think I've disappointed a lot of people.
Elizabeth Kubler Ross had it right with her stages of grief. Grief doesn't have to come just with death, but it can come with other things, like finding out that you have an essentially terminal disease, lose a job, get divorced etc.
I went through this when we learned of Lee's cancer, but hid it much better than I am now, or maybe I just don't remember, or I internalized it. Whichever it was I think I dealt better with it, at last I feel I did.
I struggle just to do daily things that are expected, including getting out of bed and getting dressed. I manage at work, put that fake persona on and go about my day. I'm afraid to let people see the real me, to see who I have become lately. It's not the same person I was a few weeks ago, I'm not the same person.
I know this won't last forever. I know I will be ok, eventually, and then I can be the real me again.
Majority of the time I am alone I spend in tears.
It's been three weeks now, or is it four? Each day is just blending into the next and I am just going through the motions and doing what's expected of me, and even then I fear messing up or disappointing. I think I've disappointed a lot of people.
Elizabeth Kubler Ross had it right with her stages of grief. Grief doesn't have to come just with death, but it can come with other things, like finding out that you have an essentially terminal disease, lose a job, get divorced etc.
I went through this when we learned of Lee's cancer, but hid it much better than I am now, or maybe I just don't remember, or I internalized it. Whichever it was I think I dealt better with it, at last I feel I did.
I struggle just to do daily things that are expected, including getting out of bed and getting dressed. I manage at work, put that fake persona on and go about my day. I'm afraid to let people see the real me, to see who I have become lately. It's not the same person I was a few weeks ago, I'm not the same person.
I know this won't last forever. I know I will be ok, eventually, and then I can be the real me again.
Sunday, June 28, 2015
working can be fun
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.
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.
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.
Thursday, April 30, 2015
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.
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.
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