Ah... hell no.
The pituitary is normally the size of a pea. The tumor by itself measures double that, (I know amazing that something that size can wreak such havoc.) part of which is around my carotid artery and part has my optic nerve draped over it. Now add scar tissue from the previous two operations and all things being considered I'd rather scrub toilets.
10/31/10
10/29/10
Why go to OHSU Pituitary Center?
Their expertise.
I didn't always believe so. At first I went where my primary doc sent me. A neurologist in Albany who greeted me with 'Why are you here?' Didn't inspire confidence.
He referred me to Endocrinologist in Salem who was on recommended list on a respected pituitary website. I trusted my care to the 'expert' who didn't check hormone levels, relied on one radiologist's suggestion of the type of tumor I had and referred me to a Salem surgeon, a nice man, but not an expert on pituitary tumors. I was happy to receive care less than an hour from home. After surgery they followed me for a few months, checked a few hormone levels but not all, ran a few MRI's and said I had a clean bill of health. I was a miracle, all tumor gone all function remained, I was good to go. They even released my care back to my primary doctor.
But I wasn't fine. My current surgeon, an expert on pituitary tumors, reviewed all my MRI's following that first surgery. He could see plainly the tumor remained from my first post surgery scan and was clearly growing in the scans that followed.
Is it a pain to have a four hour round trip every time I need to have a doctor visit or tests related to the pituitary. YES. It makes for a very long day, especially since I try to schedule all needed tests and appointments on that day so we don't have to make a million trips. BUT even when the news is bad, the wait is long, blood is drawn for the countless time and some personalities clash I know - the pituitary unit at OHSU truly have the expertise to treat me. There is comfort in that.
I didn't always believe so. At first I went where my primary doc sent me. A neurologist in Albany who greeted me with 'Why are you here?' Didn't inspire confidence.
He referred me to Endocrinologist in Salem who was on recommended list on a respected pituitary website. I trusted my care to the 'expert' who didn't check hormone levels, relied on one radiologist's suggestion of the type of tumor I had and referred me to a Salem surgeon, a nice man, but not an expert on pituitary tumors. I was happy to receive care less than an hour from home. After surgery they followed me for a few months, checked a few hormone levels but not all, ran a few MRI's and said I had a clean bill of health. I was a miracle, all tumor gone all function remained, I was good to go. They even released my care back to my primary doctor.
But I wasn't fine. My current surgeon, an expert on pituitary tumors, reviewed all my MRI's following that first surgery. He could see plainly the tumor remained from my first post surgery scan and was clearly growing in the scans that followed.
Is it a pain to have a four hour round trip every time I need to have a doctor visit or tests related to the pituitary. YES. It makes for a very long day, especially since I try to schedule all needed tests and appointments on that day so we don't have to make a million trips. BUT even when the news is bad, the wait is long, blood is drawn for the countless time and some personalities clash I know - the pituitary unit at OHSU truly have the expertise to treat me. There is comfort in that.
10/26/10
Hormones Fluctuate
By the hour, the day and yes the month. Without the aid of GH replacement and with the destructive growing tumor, every day is an adventure. Sometimes I feel okay. I start thinking maybe it's all in my head (lol) that I was overwrought. Sometimes I'm not bad, icky, cranky but as my hubby would say, within tolerance. Then there are times when acid burns the back of my throat, my stomach hurts, nausea torments, the band of pressure tightens about my head, fatigue dulls my thoughts and steals precious time from my life. The rollercoaster ride from okay to not then to merely icky can occur over days or hours. The experience is overrated.
10/23/10
New surgery date changes follow up Endocrine appointments
So far post surgery doc visits/testing:
11/23 – Tuesday – noon & 1pm endocrine/hormone testing Pit center OHSU
12/21 – Tuesday – 11am &1:30 endocrine/hormone testing Pit center OHSU
2/18 - Friday - MRI @ 9:30am followed by endocrine/hormone testing @ 11am, 1pm & 1:45pm Pit center OHSU
More MRI’s yet to be scheduled
Radiation is dependent on surgery outcome so as far as I know that will be scheduled after.
11/23 – Tuesday – noon & 1pm endocrine/hormone testing Pit center OHSU
12/21 – Tuesday – 11am &1:30 endocrine/hormone testing Pit center OHSU
2/18 - Friday - MRI @ 9:30am followed by endocrine/hormone testing @ 11am, 1pm & 1:45pm Pit center OHSU
More MRI’s yet to be scheduled
Radiation is dependent on surgery outcome so as far as I know that will be scheduled after.
10/22/10
Surgery date changed to Nov. 11th
Sigh. As much as I'm not looking forward to this, waiting sucks. Would rather just get it over and done with at this point.
What do I need?
The tumor to 'poof' disappear :)
Barring that - well the last two surgeries I had a spinal fluid leak and because of that history I've a high chance at having one this time. It sucks. Imagine the worst headache of your life times about 1000, shunt in your back to 'balance' fluid level, you have to remain sitting up and move as little as possible and your nose is packed for at least two days. Breathing that long through your mouth, awful, nasty taste. And it means extra days in hospital. Sucks. Major. - so cross fingers, toes, pray, think happy thoughts, whatever you think may work that this doesn't happen this time. If it does then cough drops, jolly ranchers, any hard candy type stuff to suck on helps make it bearable.
Cross fingers, toes, pray, think happy thoughts, whatever you think may work that Dr. Delashaw gets the tumor down enough I can do the one massive dose of Radiation. That method is my best shot at 'retarding' the growth and keeping my sight. Could I write if I'm blind? I know some have/do but it's so visual for me. There is a rhythm, an art to the construction of a paragraph, a story. I don't know if I personally could. If the tumor remains near the nerve then radiation would have to be done in small daily doses over the course of 4-6 weeks. Less effective. I don't even want to think about the stress, strain and cost of daily trips of OHSU.
One welcome bit of news - Chris was offered the opportunity to move to day shift. While we'll lose his shift differential we decided that would be best for our family, best for me. Looking at lots of 4 hour round trip drives to OHSU, tests that can last hours, (Nov. 12 my first appt. is at 8am and my last is at 1:30) plus recovery at home and it will all just be easier on me if he's on days, not trying to switch around his sleep schedule to take me places or worse go without sleep. Unfortunately his boss cautioned him that it could take awhile for this to happen, like months. So if ya'll could wish, hope, pray that it comes about soon that would be great. Selfishly it'd be nice by surgery date because his days off would be Monday, Tuesday and half of Wednesday and that would mean he could be with me at hospital longer without losing pay. While I know others will do their best to step in for him, love you all and I could say I want/need him because he's been through this with me before twice and knows how best to deal with me and the random crisises that occur in hospital but it's not that. It's not logical, certainly not pratical - I just want/need him there with me.
Barring that - well the last two surgeries I had a spinal fluid leak and because of that history I've a high chance at having one this time. It sucks. Imagine the worst headache of your life times about 1000, shunt in your back to 'balance' fluid level, you have to remain sitting up and move as little as possible and your nose is packed for at least two days. Breathing that long through your mouth, awful, nasty taste. And it means extra days in hospital. Sucks. Major. - so cross fingers, toes, pray, think happy thoughts, whatever you think may work that this doesn't happen this time. If it does then cough drops, jolly ranchers, any hard candy type stuff to suck on helps make it bearable.
Cross fingers, toes, pray, think happy thoughts, whatever you think may work that Dr. Delashaw gets the tumor down enough I can do the one massive dose of Radiation. That method is my best shot at 'retarding' the growth and keeping my sight. Could I write if I'm blind? I know some have/do but it's so visual for me. There is a rhythm, an art to the construction of a paragraph, a story. I don't know if I personally could. If the tumor remains near the nerve then radiation would have to be done in small daily doses over the course of 4-6 weeks. Less effective. I don't even want to think about the stress, strain and cost of daily trips of OHSU.
One welcome bit of news - Chris was offered the opportunity to move to day shift. While we'll lose his shift differential we decided that would be best for our family, best for me. Looking at lots of 4 hour round trip drives to OHSU, tests that can last hours, (Nov. 12 my first appt. is at 8am and my last is at 1:30) plus recovery at home and it will all just be easier on me if he's on days, not trying to switch around his sleep schedule to take me places or worse go without sleep. Unfortunately his boss cautioned him that it could take awhile for this to happen, like months. So if ya'll could wish, hope, pray that it comes about soon that would be great. Selfishly it'd be nice by surgery date because his days off would be Monday, Tuesday and half of Wednesday and that would mean he could be with me at hospital longer without losing pay. While I know others will do their best to step in for him, love you all and I could say I want/need him because he's been through this with me before twice and knows how best to deal with me and the random crisises that occur in hospital but it's not that. It's not logical, certainly not pratical - I just want/need him there with me.
What happens after surgery?
Depends on how the surgery goes. Best case 3 days in hospital then home. Back at OHSU on Nov. 23 for first round of tests to asses function, then again 2 weeks later, then 4 weeks after that then 3 months post surgery, and so on. Radiation soon after surgery. MRIs at 6 weeks and 3 months post surgery. They will have to continue following me with tests because radiation effects show slowly, basically I could lose pituitary function straight off, lose only some or gradually over a period of the next few years.
Did you have symptoms?
Well maybe. Since I have a non-functioning tumor symptoms are pretty general and easy to miss until it grows to a certain point. I had some headaches, some odd moods, more fatigue, one odd cycle last month but since Chris just had spinal surgery and though is back at work is still recovering nothing that seemed more than what could be explained by stress and worry. Seriously I can drive myself and my husband batty worrying if this headache or whatever means the pituitary is doing something so I try not to do that - well too much.
Why are you feeling bad now when you thought all was okay before MRI?
Dr. stopped the growth hormone replacement. For the lack of a better comparison with that it was like driving around a quart low. Engines running a little rough but doing okay. Without it I'm more than a couple quarts low. Still moving but really rough.
How am I feeling emotionally?
Ever watch a movie with someone who just as it's getting really good, stops it, rewinds, watchs for a while then didn't quite figure whatever out so does it again then again. That's how I feel.
For a couple years before they first discovered the tumor I felt crappy. Just after the first surgery I felt awesome, better than I had in years, bursting with energy and enthusiasm. I wrote long letters, started all sorts of projects, completed a manuscript and submitted it to a publisher. Life was good. For a short time.
Then my health declined. I kept losing ground. It took another year before they realized the tumor had grown back. After the second surgery I felt okay but not great like after the first. Energy and enthusiasm never happened. I was exhausted, moody, cold and so on. It took 9 months for them to discover my growth hormone had stopped another 5 before all the testing and approvals were done for hormone replacement. Only in the last few months had I started to feel close to normal, like I had my life back. John told me I started to act 'alive' again.
When I went to OHSU on Oct. 12 nervous but expecting all to be okay, at worst that maybe a tiny growth like before .1cm had occurred. A tiny growth that could be just watched. Instead the rewind button was hit. I'm right back at the start again only this time the dvd is scratched (scar tissue) and the dvd player (my pituitary) is barely functioning. I'm frustrated. I want to move on. I want it done, over, never to have to deal with EVER again. Accepting otherwise is difficult.
Emotional venting below-
We had plans %$#& it. Nothing grandiose, but plans. We didn't get to go camping this year at all so now that things were settling down, Chris was doing ok, we thought hey maybe we'll do some day trips. Have a family week end at the coast with Jason & Sara. A visit to see my darling great niece whom I've yet to cuddle. Plan a camping trip for next spring/summer with all our kids, Sara's family, and friends and family we haven't seen in far too long. That's all on hold.
We just got caught up enough financially we had plans, again nothing grandiose, but #$%&* it plans. Replacing the broken window with a vinyl one off craigslist, changing the oil in the cars, new jeans, a bathroom fan that isn't louder than a jet, a kitchen light that doesn't hum and flicker, in fact colman max camp chairs at wal mart next payday was the plan - ones we had died years back and these had a doable weight limit (no jokes please, I see myself in the mirror, I'm vividly aware of my size) etc... That's all on hold
It feels like just when we've climbed up out of a hole, are about to step forward and do something beyond survival, something trivial or fun, something put off because it wasn't absolutely necessary we're pulled right back into the hole.
For a couple years before they first discovered the tumor I felt crappy. Just after the first surgery I felt awesome, better than I had in years, bursting with energy and enthusiasm. I wrote long letters, started all sorts of projects, completed a manuscript and submitted it to a publisher. Life was good. For a short time.
Then my health declined. I kept losing ground. It took another year before they realized the tumor had grown back. After the second surgery I felt okay but not great like after the first. Energy and enthusiasm never happened. I was exhausted, moody, cold and so on. It took 9 months for them to discover my growth hormone had stopped another 5 before all the testing and approvals were done for hormone replacement. Only in the last few months had I started to feel close to normal, like I had my life back. John told me I started to act 'alive' again.
When I went to OHSU on Oct. 12 nervous but expecting all to be okay, at worst that maybe a tiny growth like before .1cm had occurred. A tiny growth that could be just watched. Instead the rewind button was hit. I'm right back at the start again only this time the dvd is scratched (scar tissue) and the dvd player (my pituitary) is barely functioning. I'm frustrated. I want to move on. I want it done, over, never to have to deal with EVER again. Accepting otherwise is difficult.
Emotional venting below-
We had plans %$#& it. Nothing grandiose, but plans. We didn't get to go camping this year at all so now that things were settling down, Chris was doing ok, we thought hey maybe we'll do some day trips. Have a family week end at the coast with Jason & Sara. A visit to see my darling great niece whom I've yet to cuddle. Plan a camping trip for next spring/summer with all our kids, Sara's family, and friends and family we haven't seen in far too long. That's all on hold.
We just got caught up enough financially we had plans, again nothing grandiose, but #$%&* it plans. Replacing the broken window with a vinyl one off craigslist, changing the oil in the cars, new jeans, a bathroom fan that isn't louder than a jet, a kitchen light that doesn't hum and flicker, in fact colman max camp chairs at wal mart next payday was the plan - ones we had died years back and these had a doable weight limit (no jokes please, I see myself in the mirror, I'm vividly aware of my size) etc... That's all on hold
It feels like just when we've climbed up out of a hole, are about to step forward and do something beyond survival, something trivial or fun, something put off because it wasn't absolutely necessary we're pulled right back into the hole.
What would happen if I do nothing?
I'd go blind. The tumor would grow so that it compressed the optic nerves until they ceased to function. Dr. Delashaw said then it would continue to grow, envade my templar lobe which would cause me to have seizures.
Why radiation this time?
Because every time the tumor grows it does damage. Every surgery does damage, scar tissue. My pituitary isn't functioning well right now, so the benefit of 'retarding' the growth by radiation vs having it grow back and repeating surgery every other year now outweighs the risks.
Why didn't they do radiation last time?
Because it has a high risk of ending pituitary function. My first surgery wasn't at OHSU. We all thought a factor in it growing back so aggressively afterwards was that my first surgeon didn't have Dr. Delashaw's expertise. Also since my pituitary was still functioning we hoped to preserve it.
Why is it important to reduce?
My best chance at the radiation "retarding" the tumor but not hurting my optic nerves is to make the tumor as small as possible and as far away as possible from the nerves before radiation.
Why having surgery so quick?
The sooner the surgeon can reduce the tumor and get it away from the optic nerve the better my chances are to retain my vision. Since the tumor(adenoma)is growing fast the longer I wait the bigger it is the more difficult it is to reduce away from the optic nerve.
Is it a new tumor?
No but even Chris gets that wrong sometimes. Neither my first or second surgery could get all of it. Although with the second I had a very experienced and excellent surgeon a small part of the tumor was about the carotid artery and too dangerous to remove. From those cells the tumor re grew. They call it recurrent.
What's wrong?
10/12/10 MRI report - Interval growth of the sellar mass. (Tumor grew) The mass has a new nodule of tissue which extends superiorly contacting and slightly displacing the prechiasmatic cisternal segment of the left optic nerve. This is new from the prior examination. (It's pressing against my optic nerve.)
Had a decent day today.
Easily tired, emotional but no body aches, little nausea and no headache for most of the day. Walked with the boys. Welcome break. Early evening alas it returned. Sigh. Can't sleep.
10/20/10
Feeling bad
I didn't appreciate how much the GH helped before but stopping it abruptly certain drove the point home. Mind numbing fatigue, stomach hurts (they don't know exactly why but happens whenever the tumor grows past a certain point) struggle to concentrate, persistant pressure headache, constipation, nausea etc... That mature attitude -- I'm still working on that because right now - this bites.
10/17/10
Didn't mean to sound dire
last post. A couple friends sent emails in response to it worried about our finances. We'll be okay. Will it be tough? Yeah. I am feeling overwhelmed at the moment so if my emails or posts sound abrupt, strange or dire please grant a little leeway. We have wonderful insurance through Chris' work. However this situation on the heels of Chris' spine surgery is well overwhelming. As soon as it sinks in, I'll take several deep breathes then take a hard look at my coverage, how many trips to OHSU, how we'll deal with Chris needing work, us needing his paycheck and me needing him with me at times, how many tests will be needed after etc... I'd thought, planned on, last Tuesday's testing trip being my last for another year. Now the situation is totally different, I'm still in shock, still trying to wrap my head around it. Everyone is being very supportive and wants to help if we need. All I was trying to say before is I still don't know what, who, when, where or if help is needed.
10/16/10
Working on a mature attitude
When I was little I wanted to be rare. My sister had severe allergies, was sick a lot and got tons of attention and stuffed animals. I was jealous. I wanted all that too.
I don't now.
Pituitary tumors (aka adenoma) are usually slow growing. Less than 20% of people who have to have them surgically remove/reduced have a recurrence and require another surgery in less than 10 years. I've a rare one. It grew aggressively back after my first surgery in Feb. 07 and again since my second Feb. 09. It has doubled since last year and again is against my left optic nerve.
Since my tumor is growing my genatropin (growth hormone replacement was stopped immediately. Although there is no evidence that it can make a tumor start to or accelerate the growth of a tumor they simply do not want to take the slightest risk that it might. Which means all the problems due to lack of GH will return. :( I'm told if all goes well I'll be able to go back on it in about a year. It's been 4 days and already I feel off, odd, headache, nausea, shaking and exhausted - how much is stress and how much is lack of GH I don't know.
The sooner surgery is done greater the odds of preserving my sight. So Dr. Delashaw will on Nov. 1. Then soon after that, within weeks, I'll have radiation. That wasn't done last time because it has a 90% chance of causing the pituitary to cease all function. Between the aggressive regrowth and all the surgeries right now I'm told it's barely functioning. (Two other hormones on barely holding on to normal limits) The stress and damage and risks of repeating surgery every 2 years or less with make it fail anyway so the goal now it to get it away from my optic nerves and try to 'retard' the growth with radiation.
Dr. Delashaw ended with the reality that since, though rare for these tumor, mine has proven time and again to grow aggressively I'll most likely need surgery again in the future- the radiation will hopefully buy me more time, 5-10 years instead of 1-2.
Words cannot express how I feel at the moment. Coming on the heels of Chris's recovery from surgery the strain is ... His vacation time is exhausted. Don't know how much unpaid time off we can or his work can handle. Our health flex plan emptied on Chris' surgery. I haven't checked yet to see how all the deductable- out of pocket stuff is. Frankly this all seems unreal and I'm having trouble accepting it.
So basically I don't know what we may need or not. I don't know if we need help or not. Unless someone knows a person who wants to buy a 1977 VW camper project van for around 2000.00.
We're taking the weekend to absorb all this information. Monday I have to have pre op stuff done. We'll try to figure out stuff sometime this week and make a plan.
I don't now.
Pituitary tumors (aka adenoma) are usually slow growing. Less than 20% of people who have to have them surgically remove/reduced have a recurrence and require another surgery in less than 10 years. I've a rare one. It grew aggressively back after my first surgery in Feb. 07 and again since my second Feb. 09. It has doubled since last year and again is against my left optic nerve.
Since my tumor is growing my genatropin (growth hormone replacement was stopped immediately. Although there is no evidence that it can make a tumor start to or accelerate the growth of a tumor they simply do not want to take the slightest risk that it might. Which means all the problems due to lack of GH will return. :( I'm told if all goes well I'll be able to go back on it in about a year. It's been 4 days and already I feel off, odd, headache, nausea, shaking and exhausted - how much is stress and how much is lack of GH I don't know.
The sooner surgery is done greater the odds of preserving my sight. So Dr. Delashaw will on Nov. 1. Then soon after that, within weeks, I'll have radiation. That wasn't done last time because it has a 90% chance of causing the pituitary to cease all function. Between the aggressive regrowth and all the surgeries right now I'm told it's barely functioning. (Two other hormones on barely holding on to normal limits) The stress and damage and risks of repeating surgery every 2 years or less with make it fail anyway so the goal now it to get it away from my optic nerves and try to 'retard' the growth with radiation.
Dr. Delashaw ended with the reality that since, though rare for these tumor, mine has proven time and again to grow aggressively I'll most likely need surgery again in the future- the radiation will hopefully buy me more time, 5-10 years instead of 1-2.
Words cannot express how I feel at the moment. Coming on the heels of Chris's recovery from surgery the strain is ... His vacation time is exhausted. Don't know how much unpaid time off we can or his work can handle. Our health flex plan emptied on Chris' surgery. I haven't checked yet to see how all the deductable- out of pocket stuff is. Frankly this all seems unreal and I'm having trouble accepting it.
So basically I don't know what we may need or not. I don't know if we need help or not. Unless someone knows a person who wants to buy a 1977 VW camper project van for around 2000.00.
We're taking the weekend to absorb all this information. Monday I have to have pre op stuff done. We'll try to figure out stuff sometime this week and make a plan.
MRI
The MRI on 10/12/10 revealed the tumor has doubled in size in the last year. I see Dr. Delashaw on 10/15/10.
Subscribe to:
Posts (Atom)