Covered in soft set cement. {lethargic - tired} Nauseous. Head hurts.
Why? Me + radiation.
Me = GH deficient causes fatigue. Thyroid deficient causes same and weeks before medication will help.
A radiation side effect is- can you guess? Yes, fatigue. Triple whammy. Also radiation works over time so the fatigue is supposed to peak weeks after I'm done.
Nausea - A radiation side effect or my poor working pituitary reacting to the stress of undergoing radiation.
Head hurts from being tightly held in place during the treatments. However some pain in exchange for the certainty I don't move so the radiation is delivered to the proper place is fine. I'm protective of certain things like my optic nerves and brain.
My last treatment is Monday Jan. 3rd, as anxious as I am to have this over, I'm glad to have a few days rest. I cannot imagine how hard it must be to do the five days a week for six weeks schedule, even though the radiation dose is lower, it has to be grueling.
12/31/10
How will thyroid replacement help?
Hoping energy increases, moodiness decreases, no dry skin and to stop feeling cold all the time.
Have I noticed any change? No. However doctor said it would be four to six weeks before I would. Plus right now the radiation therapy is overshadowing all else.
Will I lose weight? Wouldn't that be nice. One magic pill, hormone, and I'm like our eldest boy. Reality maybe a couple pounds. Over time, increased energy means more activity so, as always, it's up to me.
Will dose remain the same? Unknown. I'm on lowest dose. Radiation can further lower my function. In February I'll be tested again to see how I'm doing. Adjustments are likely.
Have I noticed any change? No. However doctor said it would be four to six weeks before I would. Plus right now the radiation therapy is overshadowing all else.
Will I lose weight? Wouldn't that be nice. One magic pill, hormone, and I'm like our eldest boy. Reality maybe a couple pounds. Over time, increased energy means more activity so, as always, it's up to me.
Will dose remain the same? Unknown. I'm on lowest dose. Radiation can further lower my function. In February I'll be tested again to see how I'm doing. Adjustments are likely.
12/28/10
First treatment
Had my first dose today. Took longer to run the set up scans. Surprised when they said I was done. I drove most of the way up with Chris sleeping in the passenger seat (he works night shift) then he took over at a rest area about 20 miles out. He got some rest in the car while I was treated, drove for a while to make sure I was okay, tolerated my treatment all right (and we picked up younger boys from our eldest's place where they'd spent the night) then I drove us the rest of the way. I felt wiped by the time we reached home.
I worry about my hubby, his sleep so broken up. He's coming with me each time, worried about how tired I am and may become, to make certain I'm good to drive. Wish there was high speed rail from here to OHSU or Star Trek beaming technology :)
It's going to be a long week.
I worry about my hubby, his sleep so broken up. He's coming with me each time, worried about how tired I am and may become, to make certain I'm good to drive. Wish there was high speed rail from here to OHSU or Star Trek beaming technology :)
It's going to be a long week.
12/23/10
Time frame for the radiation
5 treatments, every day for 5 days. Yeah that blew me away too. I asked if the appointment I was given for my first treatment still held and it stands. A little intimidating but appeals to my rip the band aid off let's get it done mentality. Excited that I may get it all done before the end of the year. I'd be wonderful to have the big, scary, nasty stuff behind me and have a fresh start with the new year.
All but one result is in
IGF-1 which basically measures growth hormone takes about a week to process but really it doesn't matter. I can't regain hormone function once it's lost. My basic blood work (glucose, sodium, etc.) is okay. My cortisol dropped some from last time but is still fine and functioning. My thyroid isn't. Doctor ordered medication, Levothyroxine starting tomorrow morning.
12/21/10
Another day another OHSU appoinment
I know it's been four days but sometimes it feels like I was just there. Not going to complain though my reality could've easily been driving there daily for weeks on end. I'll just smile and be grateful.
Tomorrow is my post surgery full pituitary hormonal testing. Sounds intense huh. It's not. A couple minute chat with NP, a blood draw, medicine injected, a 30-45 minutes wait then another blood draw and I go home to wait. Hopefully I'll learn the results before Christmas.
After my previous surgeries I anxiously awaited this appointment, hoping I retained function. This time I know it's just a snapshot in time. Radiation will soon alter my pituitary function.
Tomorrow is my post surgery full pituitary hormonal testing. Sounds intense huh. It's not. A couple minute chat with NP, a blood draw, medicine injected, a 30-45 minutes wait then another blood draw and I go home to wait. Hopefully I'll learn the results before Christmas.
After my previous surgeries I anxiously awaited this appointment, hoping I retained function. This time I know it's just a snapshot in time. Radiation will soon alter my pituitary function.
Number of Radiation treatments
I would've loved to have the one time single dose and be done but Dr. Fuss gave me almost as good of news. After reviewing my MRI, he says I'll need 5 treatments, my favorite number :)
As yet I don't know the schedule, he said they will finalize my plan this week. When I know I'll post it.
As yet I don't know the schedule, he said they will finalize my plan this week. When I know I'll post it.
Vision test results
I'm good. No damage from the tumor or the surgery. Some months after radiation I'll have another visual field test and I hope for the same result :)
12/18/10
The Simulation & MRI
The simulation was fast. I lay on the table. The therapist put the warm plastic over my face, small hole for nose and fastened it down on either side It molded to my features, not unpleasant but odd. I could feel my blood pumping hard across my cheeks. For some reason I thought of Han Solo being flash frozen.
The therapist ran a quick CT scan, 5 minutes maybe - table is attached, slid me in and out. He marked on the mask then freed me. My mask went into a cupboard. I get to take it home after I'm done with radiation. Paintball anyone?
Next I had an intensive MRI. Usually my MRIs take about 30 minutes but not this time. Dr. Fuss must be very precise. Two hours was a very long time to be in a small loud tube.
I had contrast with both the CT & MRI so they're having me drink tons to flush it out of my system, my kidneys. I feel worn out and my head is killing me.
The therapist gave me my first radiation appointment as I was leaving. 12/27/10 at 12:30. We still don't know the number of treatments. The doctor was reviewing my scans Thursday night and said he'd get email me, probably Friday, to let me know. After waiting all day, my dear hubby doing his best to keep me from going batty - movies - brownies - he's cute - the doctor never did email.
Now on one hand I know from painful experience if there was something horrid or needing immediate attention I'd have been contacted so that's good. However that's small comfort. So soon after surgery I'm not worried that the tumor has grown again. I'm sure that the good doctor was merely busy with other patients who have life threatening conditions.
BUT selfishly I want to know the number so we can try to make a plan. The 5 days a week for 5 to 6 weeks treatment plan seems daunting. I don't know how we'll handle that. I try not to think about it too much. We'll cross that bridge only if we must.
The waiting is hard because there's nothing I can do to effect the result. They weren't tests I could have practised or studied for, it made no difference if I rested or not, exercised or not, ate junk or healthy, lost or gained weight, argued my point of view or plead my case - the results are what they are.
My hope, my Christmas wish, my prayer, is Dr. Delashaw reduced the tumor enough so it's safe for me to do the single high dose.
The therapist ran a quick CT scan, 5 minutes maybe - table is attached, slid me in and out. He marked on the mask then freed me. My mask went into a cupboard. I get to take it home after I'm done with radiation. Paintball anyone?
Next I had an intensive MRI. Usually my MRIs take about 30 minutes but not this time. Dr. Fuss must be very precise. Two hours was a very long time to be in a small loud tube.
I had contrast with both the CT & MRI so they're having me drink tons to flush it out of my system, my kidneys. I feel worn out and my head is killing me.
The therapist gave me my first radiation appointment as I was leaving. 12/27/10 at 12:30. We still don't know the number of treatments. The doctor was reviewing my scans Thursday night and said he'd get email me, probably Friday, to let me know. After waiting all day, my dear hubby doing his best to keep me from going batty - movies - brownies - he's cute - the doctor never did email.
Now on one hand I know from painful experience if there was something horrid or needing immediate attention I'd have been contacted so that's good. However that's small comfort. So soon after surgery I'm not worried that the tumor has grown again. I'm sure that the good doctor was merely busy with other patients who have life threatening conditions.
BUT selfishly I want to know the number so we can try to make a plan. The 5 days a week for 5 to 6 weeks treatment plan seems daunting. I don't know how we'll handle that. I try not to think about it too much. We'll cross that bridge only if we must.
The waiting is hard because there's nothing I can do to effect the result. They weren't tests I could have practised or studied for, it made no difference if I rested or not, exercised or not, ate junk or healthy, lost or gained weight, argued my point of view or plead my case - the results are what they are.
My hope, my Christmas wish, my prayer, is Dr. Delashaw reduced the tumor enough so it's safe for me to do the single high dose.
12/15/10
4 1/2 weeks post surgery
How am I?
Mostly recovered from the surgery. Headaches have lessened. I've had days without one but on average I start the day without one and end the day with one, usually slight now though. It's impossible to know if that's from recovering, a poorly functioning pituitary or eye strain since my glasses don't help as they should.
Light still bothers my eyes and leads to a headache if I don't manage it. Doctor doesn't know why but doesn't think it's dangerous or a sign of something horrid wrong.
I tire easy, often lethargic. Causes: recovering from surgery, lack of GH and/or it's probable that I've other hormonal deficiencies now. Whatever the cause the result is familiar and annoying. I can not express how tired I am of being tired.
I'm cold, wearing layers of clothing, a hoodie or sweatshirt, long johns and a hat often inside. That's hormonal. Until radiation is complete, and I can go back on GH, it's something I'll have to live with.
I've a hard time concentrating, brain foggy and forgetful. Hormonal.
I've varying degrees of nausea daily. Doctor thinks it's hormonal - shocking I know - it could just go away eventually as the pituitary heals or the tests on the 21st will show something low and they'll put me on replacement. It's only the growth hormone replacement that must wait until after I'm radiated.
My nose is back to normal. I can sneeze without crying. Cold air doesn't make me cringe. If my head hurts I only need a couple ibuprofen which is a huge improvement.
I'm doing okay, holding my own. I'm impatient though. I want testing and the radiation done, my hormones balanced and my life back.
Mostly recovered from the surgery. Headaches have lessened. I've had days without one but on average I start the day without one and end the day with one, usually slight now though. It's impossible to know if that's from recovering, a poorly functioning pituitary or eye strain since my glasses don't help as they should.
Light still bothers my eyes and leads to a headache if I don't manage it. Doctor doesn't know why but doesn't think it's dangerous or a sign of something horrid wrong.
I tire easy, often lethargic. Causes: recovering from surgery, lack of GH and/or it's probable that I've other hormonal deficiencies now. Whatever the cause the result is familiar and annoying. I can not express how tired I am of being tired.
I'm cold, wearing layers of clothing, a hoodie or sweatshirt, long johns and a hat often inside. That's hormonal. Until radiation is complete, and I can go back on GH, it's something I'll have to live with.
I've a hard time concentrating, brain foggy and forgetful. Hormonal.
I've varying degrees of nausea daily. Doctor thinks it's hormonal - shocking I know - it could just go away eventually as the pituitary heals or the tests on the 21st will show something low and they'll put me on replacement. It's only the growth hormone replacement that must wait until after I'm radiated.
My nose is back to normal. I can sneeze without crying. Cold air doesn't make me cringe. If my head hurts I only need a couple ibuprofen which is a huge improvement.
I'm doing okay, holding my own. I'm impatient though. I want testing and the radiation done, my hormones balanced and my life back.
12/14/10
Visual Field
Tomorrow I've visual field exam. I had my last one April 2009 two months post surgery. I'll learn how my vision compares to last time, how well or damaged it is now. Always nice to know :) but necessary before radiation. If my nerve/s are already damaged, it makes them more susceptible to damage from the radiation and Dr. Fuss has to adjust for that to protect my vision.
Although currently my vision is a little blurry even with my glasses, I can't do an exam and get a new prescription, a new pair yet. The radiation can effect my vision. I have to wait until some time after my treatment is complete. Waiting is hard.
Although currently my vision is a little blurry even with my glasses, I can't do an exam and get a new prescription, a new pair yet. The radiation can effect my vision. I have to wait until some time after my treatment is complete. Waiting is hard.
12/11/10
Simulation
During this visit they plan the best way to send radiation to the tumor. A radiation therapist will have me lie on an examination table and stay as still as possible then she'll help move my body into the best position for treatment. I'll need to stay in that position while the medical team plans the best way to give me radiation. They'll then create a special mask for me to use during treatment in order to keep my head in the exact position for however many treatments I'll need.
The therapist may need to make some temporary marks on my skin and/or place a few small, permanent tattoo marks to show where the radiation should go. (Wow a tattoo I'd like a phoenix please.) These tattoos are about the size of a freckle. (bummer) They may also take some X-rays.
As soon as Dr. Fuss reviews the test results and makes my treatment plan, I'll learn what option I get and a appointment/s.
The therapist may need to make some temporary marks on my skin and/or place a few small, permanent tattoo marks to show where the radiation should go. (Wow a tattoo I'd like a phoenix please.) These tattoos are about the size of a freckle. (bummer) They may also take some X-rays.
As soon as Dr. Fuss reviews the test results and makes my treatment plan, I'll learn what option I get and a appointment/s.
What we learned
Treatment options are:
28 daily doses = 5 days a week for 5 1/2 weeks - lowest single doses so lowest risk
5 doses - rarely done - he'd have to check my situation against some research
1 dose - very rarely done because the tumor must be at least 5mm from the optic nerve for him to consider the one shot radiation - high single dose = higher threat.
Dr. Fuss is most concerned with protecting my vision while radiating the tumor. It's possible although I can see either the tumor re growing or the surgery has damaged the optic nerve/s. Damage would make it more vulnerable to radiation. I must have a visual field exam to assess my current status before any radiation. My eye doctor might be able to work me in tomorrow.
Risks are as expected. My risk of losing all pituitary function is high because before surgery it wasn't great, growth damages, surgery damages and radiation damages. Also despite all care I may lose vision in one or both eyes. That risk is low.
Side effects - fatigue so I'll go from feeling like a snail to a sloth and if its the long treatment then I could have some hair loss and skin irritation.
My next visit, the simulation, is on Dec. 16th. I'll have a CT and MRI that day. They overlay the test results to get an absolute accurate picture of where and how large the tumor target is. He'll know from those tests which option I'll have to do but warned us that it usually takes him a week to write up the treatment plan.
28 daily doses = 5 days a week for 5 1/2 weeks - lowest single doses so lowest risk
5 doses - rarely done - he'd have to check my situation against some research
1 dose - very rarely done because the tumor must be at least 5mm from the optic nerve for him to consider the one shot radiation - high single dose = higher threat.
Dr. Fuss is most concerned with protecting my vision while radiating the tumor. It's possible although I can see either the tumor re growing or the surgery has damaged the optic nerve/s. Damage would make it more vulnerable to radiation. I must have a visual field exam to assess my current status before any radiation. My eye doctor might be able to work me in tomorrow.
Risks are as expected. My risk of losing all pituitary function is high because before surgery it wasn't great, growth damages, surgery damages and radiation damages. Also despite all care I may lose vision in one or both eyes. That risk is low.
Side effects - fatigue so I'll go from feeling like a snail to a sloth and if its the long treatment then I could have some hair loss and skin irritation.
My next visit, the simulation, is on Dec. 16th. I'll have a CT and MRI that day. They overlay the test results to get an absolute accurate picture of where and how large the tumor target is. He'll know from those tests which option I'll have to do but warned us that it usually takes him a week to write up the treatment plan.
12/7/10
The first radiation therapy visit is called
the consultation visit. We'll get to watch a video, meet Dr. Fuss and learn how radiation therapy applies to my tumor. He'll explain my treatment options, the possible side effects of radiation and how they can be managed.
Surgery alters the size and placement of the tumor but it'll be at least a few more weeks before the surgical swelling is gone so they can do an accurate MRI. However since the pituitary hangs out beneath the brain it's helpful :) to be accurate with targeting.
The surgical team scheduled an MRI in February but this doctor will likely alter the time frame to best suit my treatment. I'm hoping for as soon as possible.
I'll need further appointments to get ready for radiation, the next one is called the Simulation visit.
Surgery alters the size and placement of the tumor but it'll be at least a few more weeks before the surgical swelling is gone so they can do an accurate MRI. However since the pituitary hangs out beneath the brain it's helpful :) to be accurate with targeting.
The surgical team scheduled an MRI in February but this doctor will likely alter the time frame to best suit my treatment. I'm hoping for as soon as possible.
I'll need further appointments to get ready for radiation, the next one is called the Simulation visit.
12/3/10
Radiation therapy
I confused my pituitary office manager when I called today about still waiting for an appointment with the "radiologist". A radiologist is the doctor who reviews MRI's and x-rays :) OOPS!
Once I explained what I meant she understood and transferred me to the radiation oncology department(still haven't a clue what's the proper reference to these kind of doctors). Moving right along I'll see Dr. Fuss click here for the radiation doctor's information on Dec. 9th at OHSU.
This is an initial visit. An MRI isn't scheduled at same time so few answers are likely but it's a start.
Once I explained what I meant she understood and transferred me to the radiation oncology department(still haven't a clue what's the proper reference to these kind of doctors). Moving right along I'll see Dr. Fuss click here for the radiation doctor's information on Dec. 9th at OHSU.
This is an initial visit. An MRI isn't scheduled at same time so few answers are likely but it's a start.
12/2/10
Still waiting
For my question about my cortisol stimulation results to be answered. "sigh"
And to hear from the radiologist's office about scheduling an office visit, a post op. MRI and hearing his recommendation as to what type of radiation I should go with. "heavy sigh"
Waiting isn't my strong suit.
And to hear from the radiologist's office about scheduling an office visit, a post op. MRI and hearing his recommendation as to what type of radiation I should go with. "heavy sigh"
Waiting isn't my strong suit.
11/30/10
Are all types of pituitary radiation the same?
No. There are different methods of delivering radiation to the pituitary gland. Conventional (fractionated) radiation refers to delivery of a small amount of radiation every day for 4 to 5 weeks. Stereotactic radiation refers to delivery of a precisely focused beam of radiation to the remaining tumor, usually as one treatment (for example, the Gamma Knife, LINEAC, proton beam).
The decision as to which type of radiation to administer must be made only after a careful review of the MRI scan to assess the size and location of the residual tumor. A large tumor that is near the optic chiasm (eye nerves) is not suitable for stereotactic radiation because of the intensity (radiation dose) of the single treatment and risk of damage to vision. Stereotactic radiation is reserved for residual tumor that is not near the optic chiasm. Surgery is sometimes needed to remove the portion of the tumor that is near the optic chiasm so that more effective radiation therapy can be given. This is what we're hoping was done with this surgery.
A referral to the radiologist was sent on Nov. 16th. I'm waiting to hear from his office to schedule an appointment. My endocrinologist believes I should hear from him this week. However the surgical swelling must go down then a post surgery MRI must be done before he can recommend what type of radiation needs done.
I'm still hoping for the one shot deal. The thought of a four hour daily round trip not including the time for the radiation is overwhelming. If everyone could wish for, pray for, think positive thoughts for the stereotactic - one shot- radiation I'd be most grateful.
The decision as to which type of radiation to administer must be made only after a careful review of the MRI scan to assess the size and location of the residual tumor. A large tumor that is near the optic chiasm (eye nerves) is not suitable for stereotactic radiation because of the intensity (radiation dose) of the single treatment and risk of damage to vision. Stereotactic radiation is reserved for residual tumor that is not near the optic chiasm. Surgery is sometimes needed to remove the portion of the tumor that is near the optic chiasm so that more effective radiation therapy can be given. This is what we're hoping was done with this surgery.
A referral to the radiologist was sent on Nov. 16th. I'm waiting to hear from his office to schedule an appointment. My endocrinologist believes I should hear from him this week. However the surgical swelling must go down then a post surgery MRI must be done before he can recommend what type of radiation needs done.
I'm still hoping for the one shot deal. The thought of a four hour daily round trip not including the time for the radiation is overwhelming. If everyone could wish for, pray for, think positive thoughts for the stereotactic - one shot- radiation I'd be most grateful.
Is radiation necessary?
Radiation to the pituitary is not the first line of treatment for most pituitary tumors. It doesn't produce an immediate effect to shrink the tumor. It may take years to be effective.
In my case 3 surgeries in 3 years 2007, 2009, 2010 shows a tumor with an aggressive re growth pattern. Radiation will, most likely, eventually wipe out my pituitary function but without it, odds are, that would also be the end result of countless re growths and repeated surgeries. Indeed without radiation I could lose all function and still have a re growth that threatened my optic nerves and surrounding brain tissue.
Bottom line, I don't have the stomach for nor the courage to contemplate surgery every 18 months.
In my case 3 surgeries in 3 years 2007, 2009, 2010 shows a tumor with an aggressive re growth pattern. Radiation will, most likely, eventually wipe out my pituitary function but without it, odds are, that would also be the end result of countless re growths and repeated surgeries. Indeed without radiation I could lose all function and still have a re growth that threatened my optic nerves and surrounding brain tissue.
Bottom line, I don't have the stomach for nor the courage to contemplate surgery every 18 months.
Good days & Bad days
Overall I believe I'm doing fairly well. I've good days where other than a dull headache and fatigue I almost feel normal. Then there are days like the last two. I've been very sensitive to light and by late afternoon that dull headache has ballooned into a major event.
Somedays I'm on an even keel, emotionally, somedays I only think I am and it's easy to know the difference.
On good days-
Question to my darling husband - Am I doing good hon?
Answer - You're doing great. You mind if we go hunting?
Question to my eldest son - Am I doing good bug?
Answer - You're doing awesome. Are you using the stuff we got you?
Question to my middle son - Am I doing good?
Answer - Yep, are you ready to build the fish tank with me?
Question to my youngest son - Am I doing good?
Answer - Yeah, so how are you doing on your story?
On bad days-
Question to my darling husband - Am I being overemotional hon?
Answer - I love you honey.
Question to my eldest son - Am I being overemotional bug?
Answer - I love you mom.
Question to my middle son - Am I being overemotional?
Answer - I love you mom.
Question to my youngest son - Am I being overemotional?
Answer - I love you mom.
My guys are pretty cool. I'm lucky to have them.
Somedays I'm on an even keel, emotionally, somedays I only think I am and it's easy to know the difference.
On good days-
Question to my darling husband - Am I doing good hon?
Answer - You're doing great. You mind if we go hunting?
Question to my eldest son - Am I doing good bug?
Answer - You're doing awesome. Are you using the stuff we got you?
Question to my middle son - Am I doing good?
Answer - Yep, are you ready to build the fish tank with me?
Question to my youngest son - Am I doing good?
Answer - Yeah, so how are you doing on your story?
On bad days-
Question to my darling husband - Am I being overemotional hon?
Answer - I love you honey.
Question to my eldest son - Am I being overemotional bug?
Answer - I love you mom.
Question to my middle son - Am I being overemotional?
Answer - I love you mom.
Question to my youngest son - Am I being overemotional?
Answer - I love you mom.
My guys are pretty cool. I'm lucky to have them.
The results
My basic blood work came back normal. My cortisol levels also were within normal limits but way different from my previous tests so I've a question in to my doctor as to why.
In the mean time I was told to wean off the medication completely. 11/26/10 was my last day and yep Saturday was not fun. At least it was Chris' day off so he didn't miss work for me.
In the mean time I was told to wean off the medication completely. 11/26/10 was my last day and yep Saturday was not fun. At least it was Chris' day off so he didn't miss work for me.
Testing Day
The day dawns icy, cold and snowing. The boys excited about school being canceled have done what any decent teenager does to celebrate. Yep they went back to bed.
We head out extra early because of the weather. The frosty air tortures my raw sinus'. I withheld the medication as instructed and am slightly nauseous when we finally arrive in one piece and on time thanks to hubby's driving skills. We slid only once the whole trip, as we left town.
Doctor appointments and testing involves a lot of waiting. This test requires my blood to be drawn, medication given to stimulate a response, a 30 minute wait then more blood drawn. They test my initial level, then my level when stimulated also they do a basic blood panel to check my sodium and glucose and etc. to make certain I'm doing okay with those post surgery.
During this time the NP(nurse practitioner)comes in, asks some questions to see how I'm doing, and looks up my tumor's pathology report. It's fine, basically the same as last time which is at once reassuring - it didn't morph into something dastardly - and disappointing - they can't tell me why the darn thing grows back so aggressively.
However NP thinks based on my answers and her short exam that I can start to wean off the hydrocortisone. I'm to take a half dose that day and the next while we wait for the blood work to confirm I'll be all right without it.
Once I'm done there, we get to ride the tram up to the main hospital to see the nose surgeon. Interesting but the chill air is still not fun. More waiting. Then in to have the doctor's assistant shoot bitter, nasty fluid up my nose - supposed to numb it - then nasal passages examined and cleaned. The experience is overrated.
Long drive home, I'm exhausted, hurting and even though I've taken the half dose I'm struggling with nausea but trying not to make that obvious to Chris. He's scheduled to work, already minutes late and I already feel like a giant burden.
Unfortunately the nausea only gets worse, eventually I call my poor husband home. The doctors do not want me to throw up under any circumstances. He plies me with sprite and crackers as we both hope I can hold it together because I do not want to be back in the hospital. It finally eases in the wee hours. This experience too was way overrated and one I'd just as soon not repeat.
We head out extra early because of the weather. The frosty air tortures my raw sinus'. I withheld the medication as instructed and am slightly nauseous when we finally arrive in one piece and on time thanks to hubby's driving skills. We slid only once the whole trip, as we left town.
Doctor appointments and testing involves a lot of waiting. This test requires my blood to be drawn, medication given to stimulate a response, a 30 minute wait then more blood drawn. They test my initial level, then my level when stimulated also they do a basic blood panel to check my sodium and glucose and etc. to make certain I'm doing okay with those post surgery.
During this time the NP(nurse practitioner)comes in, asks some questions to see how I'm doing, and looks up my tumor's pathology report. It's fine, basically the same as last time which is at once reassuring - it didn't morph into something dastardly - and disappointing - they can't tell me why the darn thing grows back so aggressively.
However NP thinks based on my answers and her short exam that I can start to wean off the hydrocortisone. I'm to take a half dose that day and the next while we wait for the blood work to confirm I'll be all right without it.
Once I'm done there, we get to ride the tram up to the main hospital to see the nose surgeon. Interesting but the chill air is still not fun. More waiting. Then in to have the doctor's assistant shoot bitter, nasty fluid up my nose - supposed to numb it - then nasal passages examined and cleaned. The experience is overrated.
Long drive home, I'm exhausted, hurting and even though I've taken the half dose I'm struggling with nausea but trying not to make that obvious to Chris. He's scheduled to work, already minutes late and I already feel like a giant burden.
Unfortunately the nausea only gets worse, eventually I call my poor husband home. The doctors do not want me to throw up under any circumstances. He plies me with sprite and crackers as we both hope I can hold it together because I do not want to be back in the hospital. It finally eases in the wee hours. This experience too was way overrated and one I'd just as soon not repeat.
After Surgery
Adrenal insufficiency is the deficiency of one or more hormones made by the adrenal glands. Pituitary disorders, tumors and/or surgery can cause low levels of the adrenal hormone, Cortisol.
As a pre caution I was given hydrocortisone following surgery and took it once a day until 11/23/10. On that day we drove up to OHSU so they could test me. The hope always is that I've retained enough function so I don't have to take the steroid any longer.
Ever drank a ton of caffeine trying to stay awake when you're exhausted? That's how Hydrocortisone makes me feel. Internally jittery, like I can feel my heartbeat and once a week or so passes from surgery though I'm still easily tired I struggle with insomnia.
If I ever have to be on it for longer than a few weeks I'm told my body would adjust to it.
As a pre caution I was given hydrocortisone following surgery and took it once a day until 11/23/10. On that day we drove up to OHSU so they could test me. The hope always is that I've retained enough function so I don't have to take the steroid any longer.
Ever drank a ton of caffeine trying to stay awake when you're exhausted? That's how Hydrocortisone makes me feel. Internally jittery, like I can feel my heartbeat and once a week or so passes from surgery though I'm still easily tired I struggle with insomnia.
If I ever have to be on it for longer than a few weeks I'm told my body would adjust to it.
11/20/10
What's next?
I'll be back at OHSU for testing this coming Tuesday. Following surgery they put me on hydrocort, a steroid which replaces an important hormone, cortisol. Sometimes the tumor growth or the surgery can cause secondary adrenal insufficiency.
The doctor was clear that between the tumor re growing, the third surgery and the radiation, the failure of more hormones is expected. The status of my pituitary function going in wasn't great. She said most people following surgery and radiation would likely lose some/all function over a period of five to seven years. She said in my case she expects it in less than two. That's simply reality. It sucks but it is.
Hopefully the test will reveal that I can still produce that one on my own. At least for a while :) one less medication to take for as long as possible.
Also hoping my biopsy results will be in by then. Radiology won't start the scheduling process for that until they see the tissue test report.
As much as I'm not looking forward to it, I'm a rip the Band-Aid off kind of girl. I'm already feeling crappy. The sooner it's done, the sooner I can start focusing on feeling better instead of what test, what procedure is next.
The doctor was clear that between the tumor re growing, the third surgery and the radiation, the failure of more hormones is expected. The status of my pituitary function going in wasn't great. She said most people following surgery and radiation would likely lose some/all function over a period of five to seven years. She said in my case she expects it in less than two. That's simply reality. It sucks but it is.
Hopefully the test will reveal that I can still produce that one on my own. At least for a while :) one less medication to take for as long as possible.
Also hoping my biopsy results will be in by then. Radiology won't start the scheduling process for that until they see the tissue test report.
As much as I'm not looking forward to it, I'm a rip the Band-Aid off kind of girl. I'm already feeling crappy. The sooner it's done, the sooner I can start focusing on feeling better instead of what test, what procedure is next.
How am I?
One week and one day from surgery. I've a nagging a sinus headache, nasal congestion and raw nose. I'm taking saline nasal spray, to help keep inner irritated nose moist, decongestant to help the headache and was on strong pain medication.
Today was my first full day with only over the counter meds and it was a little rough. Nice to be off of the prescription stuff though, in addition to feeling out of it, woozy and/or spacey, my emotions were all over the place.
Fatigue, my all to familiar friend had returned last month when they ceased my GH, is worse now. If my hurting head didn't make sleep uncomfortable at times, I wouldn't be out of bed much. I'm very sensitive to light and noise and retreat to my dark bedroom for hours. Over the next two-three weeks my pain should lessen, the fatigue depends on what's due to the surgery and what has a hormonal cause.
Tuesday I had blood work done. Sometimes the pituitary can mess up it's signal to the kidneys after surgery and basically flush all sorts of good stuff out of your body. My sodium and electrolytes were all fine. One more hurdle crossed.
Today was my first full day with only over the counter meds and it was a little rough. Nice to be off of the prescription stuff though, in addition to feeling out of it, woozy and/or spacey, my emotions were all over the place.
Fatigue, my all to familiar friend had returned last month when they ceased my GH, is worse now. If my hurting head didn't make sleep uncomfortable at times, I wouldn't be out of bed much. I'm very sensitive to light and noise and retreat to my dark bedroom for hours. Over the next two-three weeks my pain should lessen, the fatigue depends on what's due to the surgery and what has a hormonal cause.
Tuesday I had blood work done. Sometimes the pituitary can mess up it's signal to the kidneys after surgery and basically flush all sorts of good stuff out of your body. My sodium and electrolytes were all fine. One more hurdle crossed.
Short Stay
The doctors wouldn't aggree to send me home Thursday night. However the surgeon was pleased that the tumor was 'soft' and therefore what he could remove was 'easily' done. As I've posted before my tumor cannot be completely removed since part of it is about the carotid artery, which supplies the brain.
However since I didn't have a leak, I had a much shorter confinment. I was discharged Saturday afternoon, tired, hurting but very happy to come home.
Still not up for happy dance yet but image snoopy doing his thing for me. :)
However since I didn't have a leak, I had a much shorter confinment. I was discharged Saturday afternoon, tired, hurting but very happy to come home.
Still not up for happy dance yet but image snoopy doing his thing for me. :)
Day of Surgery
I was told to be at OHSU by 7:30am on Thursday Nov. 11th. They couldn't give me time of surgery but said I was second in line.
It was a long quiet dark drive. Countless thoughts zipping through my mind but few words spoken. It felt so familiar to park in the patient garage. Only a little over four months have passed since Chris' spinal fusion and it was one week shy of twenty one months since my previous pituitary surgery. Too familiar by far. I felt trapped by circumstances, by the tumor, by the doctor and my steadfast husband who while he gently held my hand also assured me I wasn't leaving until they discharged me - after the surgery.
As is the typical time warping of hospitals, I was finally wheeled back into after 1:30pm. So tired and worn out by then all I wanted was for it to be done and over with.
They removed as much as possible transsphenoidally. The approach is through the sphenoid sinus, one of the facial air spaces behind the nose. An incision was made in the back wall of the nose and the sphenoid sinus is entered directly. Our eldest told me afterward that when told I didn't have a CSF leak, Chris looked like he wanted to hug the doctor. When I woke with no nasty packing, headaching but not so badly I wanted to rip it off, I knew instantly I wasn't leaking, heartfelt relief enveloped me. Too exhausted for a happy dance at that moment, I settled for a large smile. A small miracle to me. Many thanks to all who keep me in their thoughts and prayers that day.
BTW if my medicated memory is correct, once I was settled in my room Chris and Jason did cute happy dances on my request. :)
It was a long quiet dark drive. Countless thoughts zipping through my mind but few words spoken. It felt so familiar to park in the patient garage. Only a little over four months have passed since Chris' spinal fusion and it was one week shy of twenty one months since my previous pituitary surgery. Too familiar by far. I felt trapped by circumstances, by the tumor, by the doctor and my steadfast husband who while he gently held my hand also assured me I wasn't leaving until they discharged me - after the surgery.
As is the typical time warping of hospitals, I was finally wheeled back into after 1:30pm. So tired and worn out by then all I wanted was for it to be done and over with.
They removed as much as possible transsphenoidally. The approach is through the sphenoid sinus, one of the facial air spaces behind the nose. An incision was made in the back wall of the nose and the sphenoid sinus is entered directly. Our eldest told me afterward that when told I didn't have a CSF leak, Chris looked like he wanted to hug the doctor. When I woke with no nasty packing, headaching but not so badly I wanted to rip it off, I knew instantly I wasn't leaking, heartfelt relief enveloped me. Too exhausted for a happy dance at that moment, I settled for a large smile. A small miracle to me. Many thanks to all who keep me in their thoughts and prayers that day.
BTW if my medicated memory is correct, once I was settled in my room Chris and Jason did cute happy dances on my request. :)
11/2/10
Halloween started with the Headache from Hell
Woken by the worst headache I've had in a very long time. It haunted me until the wee hours of the following morning. Took the limit of pain medication then being slightly stubborn went out for a couple hours of family fun. I was toast the rest of the day and feel worn out today. Pleased the pain subsided to a dull pressure ache. Hope it remains such for a while.
This headache came with an odd complaint. My eyes felt and still feel painfully dry, especially my left hurts. Eye drops provide temporary relief, I've gone through half a bottle.
Doctor's comment on the above. "You can get both vessel constriction and dilation which may be an explanation." (Now if I only understood what that meant.) And I'm to use whatever keeps me comfortable, pain medication. eye drops etc. (Do large doses of chocolate count?) until surgery. Nothing else can be done until afterwards.
8 more days of waiting.
This headache came with an odd complaint. My eyes felt and still feel painfully dry, especially my left hurts. Eye drops provide temporary relief, I've gone through half a bottle.
Doctor's comment on the above. "You can get both vessel constriction and dilation which may be an explanation." (Now if I only understood what that meant.) And I'm to use whatever keeps me comfortable, pain medication. eye drops etc. (Do large doses of chocolate count?) until surgery. Nothing else can be done until afterwards.
8 more days of waiting.
10/31/10
Is it easier the third time?
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.
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.
10/29/10
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.
8/14/10
It's been four months and one week
since I started on the GH and I'm doing good :) I'm not having side effects. I'm no longer surviving. I'm not bouncing off the walls but I have energy again. I can go for walks, go in the woods or by the river with my family, explore, hike around, rock hound without forcing myself to push through exhaustion. I feel normal, well as normal as I can be and words cannot express just how good that feels. I have the tools to enjoy, embrace and celebrate living again.
I saw my doctor in June and my GH levels were right where she wanted them to be. My dosage stayed the same which is good because any adjustment might of meant going through side effects again. And my thyroid levels, which had been 'within normal limits' changed for the better, back to levels I haven't seen since right after my first operation. Perhaps my body, my other hormones enjoy my GH being 'normal' :)
Doctor said I should continue to see improvement over six months to one year then should level out, though the last month I haven't noticed any changes. Then again I've been focused on helping Chris recover from surgery so subtle changes may have gone unnoticed.
My next appointment is Oct. 12th. Blood work to check my levels and an MRI. Since I feel good, I think the MRI will be good. Small worry in the back of my mind is that this is my one year from last MRI - MRI. The last time I went 12 months between MRI's is when they discovered the tumor re grew but I remind myself that during that other year, I felt horrid, I don't now. Realistically pituitary tumors have a high probability of re growth, usually quite slowly, so I know it could grow, I know it probably will. My hope is that it grows so slowly they can't measure it. On last year's MRI all that remained was a few cells. It's my hope that's all that this year's will show as well.
I saw my doctor in June and my GH levels were right where she wanted them to be. My dosage stayed the same which is good because any adjustment might of meant going through side effects again. And my thyroid levels, which had been 'within normal limits' changed for the better, back to levels I haven't seen since right after my first operation. Perhaps my body, my other hormones enjoy my GH being 'normal' :)
Doctor said I should continue to see improvement over six months to one year then should level out, though the last month I haven't noticed any changes. Then again I've been focused on helping Chris recover from surgery so subtle changes may have gone unnoticed.
My next appointment is Oct. 12th. Blood work to check my levels and an MRI. Since I feel good, I think the MRI will be good. Small worry in the back of my mind is that this is my one year from last MRI - MRI. The last time I went 12 months between MRI's is when they discovered the tumor re grew but I remind myself that during that other year, I felt horrid, I don't now. Realistically pituitary tumors have a high probability of re growth, usually quite slowly, so I know it could grow, I know it probably will. My hope is that it grows so slowly they can't measure it. On last year's MRI all that remained was a few cells. It's my hope that's all that this year's will show as well.
8/7/10
Boy its been awhile
My blogging and such took a back seat to my husband's needs for the past several weeks/months. He'd suffered back pain for years off and on and it despite a number of efforts to deal with it during that time it worsened, becoming unbearable this spring, especially in May. He had to have spinal fusion surgery. Between his pre and post operative pain/care and work to improve (and he's doing excellent) I let basically everything but him and the boys slide.
Now that he's recovered enough to be on a work/training trip, I'm going to do my best to catch up. Details in days to follow but I'm doing quite well :)
Now that he's recovered enough to be on a work/training trip, I'm going to do my best to catch up. Details in days to follow but I'm doing quite well :)
4/30/10
End of week three
Chris says I'm continuing to improve. I'll take that on trust. It's hard for me to judge. I think my energy level is better but really it had nowhere to go but up.
Headaches continued to dog me, some quite nasty ones had me in tears. I worried that the medicene that was starting to help me would end up causing a bad enough side effect I couldn't continue it. However the last couple of days, I haven't had a single one. I'm hoping I've adjusted enough I'm done with them.
Emotionally I still feel raw. I'm easily overwhelmed. I'm trying to be more interactive, trying to post daily on facebook and my writing board. Not doing as well on returning calls and emails :(.
My body seems little different than last week but I haven't back slid. It's early in the process. I'm only on the initial dosage and so I have to remind myself to be patient.
I thought I'd gotten pretty good at giving myself the shots but the last two I managed to hit veins. Just a little blood, a little stinging and a lot of sheepishness.
Overall I believe the GH is worth it and Chris says he's certain it is.
Headaches continued to dog me, some quite nasty ones had me in tears. I worried that the medicene that was starting to help me would end up causing a bad enough side effect I couldn't continue it. However the last couple of days, I haven't had a single one. I'm hoping I've adjusted enough I'm done with them.
Emotionally I still feel raw. I'm easily overwhelmed. I'm trying to be more interactive, trying to post daily on facebook and my writing board. Not doing as well on returning calls and emails :(.
My body seems little different than last week but I haven't back slid. It's early in the process. I'm only on the initial dosage and so I have to remind myself to be patient.
I thought I'd gotten pretty good at giving myself the shots but the last two I managed to hit veins. Just a little blood, a little stinging and a lot of sheepishness.
Overall I believe the GH is worth it and Chris says he's certain it is.
4/20/10
Two weeks complete
The bad, always best to get that out of the way first :)
The headaches for some hours after taking medicine persists. Not horrid, just throbbing. It messes with me somewhat because when the tumor grows large enough I've headaches. Logically I know the MRI was good, that the tumor is only a few cells large but emotionally lets just say I'm not fond of headaches.
The emotional, social isolation, having trouble wanting to engage with people issue persists. The scene in Top Gun when Maverick disengages then struggles to engage comes to mind except he recovers in a big way. I take a small step then retreat a half a step. I managed some email, some posts and chats on facebook but just couldn't go to a birthday party, can barely handle being among all the people at the boy's track meets, had difficulty handling teen angst and cranky working long hours husband. It still feels like I'm missing a protective, layer of emotional skin, everything stings.
The good - my body is functioning better.
My skin while still dry is less so, no longer resembles my memory of my Grandma's skin at 80 maybe at 60 now.
The last few days I haven't had to take what used to be a daily, stirring spoon heaped with fiber in order to 'function' in the bathroom. Very pleased about that. I felt like an old lady who had to have her bran muffin and prunes every morning or there was hell to pay.
Still tired but less so, still moody but less so, still trouble concentrating, being able to think clear but less so.
Imagine living constantly navigating through dense fog. Today while I'm still making my way through troubling, annoying, difficult to see through fog, it's less dense, lighter and I can maneuver better.
From the inside it's hard to gauge if I'm improving or I'm just hoping I am so I asked Chris his opinion. He says I'm improving. The fog analogy above is his. :)
I am hopeful.
The headaches for some hours after taking medicine persists. Not horrid, just throbbing. It messes with me somewhat because when the tumor grows large enough I've headaches. Logically I know the MRI was good, that the tumor is only a few cells large but emotionally lets just say I'm not fond of headaches.
The emotional, social isolation, having trouble wanting to engage with people issue persists. The scene in Top Gun when Maverick disengages then struggles to engage comes to mind except he recovers in a big way. I take a small step then retreat a half a step. I managed some email, some posts and chats on facebook but just couldn't go to a birthday party, can barely handle being among all the people at the boy's track meets, had difficulty handling teen angst and cranky working long hours husband. It still feels like I'm missing a protective, layer of emotional skin, everything stings.
The good - my body is functioning better.
My skin while still dry is less so, no longer resembles my memory of my Grandma's skin at 80 maybe at 60 now.
The last few days I haven't had to take what used to be a daily, stirring spoon heaped with fiber in order to 'function' in the bathroom. Very pleased about that. I felt like an old lady who had to have her bran muffin and prunes every morning or there was hell to pay.
Still tired but less so, still moody but less so, still trouble concentrating, being able to think clear but less so.
Imagine living constantly navigating through dense fog. Today while I'm still making my way through troubling, annoying, difficult to see through fog, it's less dense, lighter and I can maneuver better.
From the inside it's hard to gauge if I'm improving or I'm just hoping I am so I asked Chris his opinion. He says I'm improving. The fog analogy above is his. :)
I am hopeful.
4/14/10
Another day, another shot
I'm going to start posting once a week rather than daily. On day 8 and day 9 I revisited my thighs. I've almost got the routine down pat. Slight odd taste in my mouth and slight headache but doing alright. Chris tells me he believes he sees some improvement in my mood. I wonder how does a person measure that?
One week
Turned the other cheek, lol. Chris took another jab at me :) No shakiness at all but again a slight headache.
4/10/10
Day Six
Tonight my hands didn't shake a bit. I didn't draw any blood. I didn't feel the jab. I did pretty darn good. Still having a slight headache afterwards. I wonder how to judge moods, from the inside I don't know if I can tell when and if there's improvement. I keep telling myself I have to give it time but I want to feel it working so bad.
Yesterday
Chris was a pain in my butt, literally. He gave me my GH shot, was way too happy about it. lol Seriously though my husband was great and other than a slight jab it didn't hurt. I didn't get shaky so I'm hoping that my body is starting to adjust to it. I did have a headache for a while but it wasn't bad.
4/9/10
Next dose
I can't say I've got this down cold yet. My hands still shake as I prepare the Genotropin but it seemed less daunting tonight.
I feel less shaky afterwards this time which is good. I'll also note I've had a slight metallic taste in my mouth since the dose.
Another symptom I have is having difficulty regulating body temperate. I get cold easy. The boys call me lizard. I also overheat easy. No cute nickname for that but during the summer months I've had to be careful.
I'm wondering if that will improve. I wonder what is simply just how I am, how my body works and what all is part of the deficiency.
I feel less shaky afterwards this time which is good. I'll also note I've had a slight metallic taste in my mouth since the dose.
Another symptom I have is having difficulty regulating body temperate. I get cold easy. The boys call me lizard. I also overheat easy. No cute nickname for that but during the summer months I've had to be careful.
I'm wondering if that will improve. I wonder what is simply just how I am, how my body works and what all is part of the deficiency.
4/8/10
Day three
I'm supposed to give my shots in my thighs, abdomen or buttocks and I'm not to give a shot in the same site two days in a row. Tonight I was a little nervous because it was time to move to the abdomen. For some reason I thought it'll hurt more, be more sensitive. Actually I did better than yesterday. It didn't hurt at all and no blood.
I got over tired, over stressed putting the washer back in place earlier. It just returned from getting repaired. Chris got it in the house, in the living room then had to go to work. The boys and I got it through the house, through the garage and back under the dryer. One teen, overtired from practice, lost his temper in the process. I sent him to work on homework. Took an hour to hook everything back into place properly in the small dark place it goes. Then at first try it wouldn't spin and I was on the verge of either crying or screaming. Luckily Chris called. He reminded me the repair guys said the soap drawer wasn't closing quite right and that would mess up the signal to spin. Weird I know but yes I open and shut it and the wonderful machine worked.
I take it back. After two loads no matter what I do the demon machine will not wash. ARGH!
So at the moment my chest hurts a bit, I'm a little shaky and hot. I can't tell what's due to the medication and what's just trying to cope. I plan to note how I feel every day for some weeks to track patterns and hopefully improvements.
I got over tired, over stressed putting the washer back in place earlier. It just returned from getting repaired. Chris got it in the house, in the living room then had to go to work. The boys and I got it through the house, through the garage and back under the dryer. One teen, overtired from practice, lost his temper in the process. I sent him to work on homework. Took an hour to hook everything back into place properly in the small dark place it goes. Then at first try it wouldn't spin and I was on the verge of either crying or screaming. Luckily Chris called. He reminded me the repair guys said the soap drawer wasn't closing quite right and that would mess up the signal to spin. Weird I know but yes I open and shut it and the wonderful machine worked.
I take it back. After two loads no matter what I do the demon machine will not wash. ARGH!
So at the moment my chest hurts a bit, I'm a little shaky and hot. I can't tell what's due to the medication and what's just trying to cope. I plan to note how I feel every day for some weeks to track patterns and hopefully improvements.
4/7/10
Second day
I gave myself my first shot, second dose, second day on Genotropin. I did okay but Chris did better yesterday. Mine actually bled a drop, :) but my dear hubby didn't make me bleed at all. My eldest laughed when he learned I made Dad give me the first dose. He said I should consider this a 'bonding' experience.
I feel a little shaky as I did yesterday but otherwise okay. Perhaps a little headache but that could be just the late hour and needing to sleep.
I feel a little shaky as I did yesterday but otherwise okay. Perhaps a little headache but that could be just the late hour and needing to sleep.
4/6/10
Growth Hormone Replacement
If you click on the title of this post you'll go to a site about my medication and Adult Growth Hormone Deficiency (AGHD).
We've decided that replacement therapy is best for me and since my pituitary won't suddenly start producing it again, I'll be taking this for the rest of my life.
We've had some good news. Our insurance approved my prescription for Genotropin on the third week of March. Of course only then did they tell us they'd cover it like any other name brand prescription. We have a 30.00 per month co-pay but they'll 'review' it next year. However this year the Pfizer Bridge Program is going to cover the co-pay. I cannot express how much of a relief those two pieces of news were.
Another bit of interesting news is that on the day of my second stimulation test my IGF –1 was normal even though my growth hormone was low. Therefore my growth hormone could've been low for some time, weeks, months, years, there's is no way to tell. The initial growth of the tumor could've done the damage, the first surgery, the re growth, the second surgery, when and which of those events did it is anyone's guess. I'm lucky my IGF-1 was low in November because otherwise they wouldn't have tested me.
I'm also lucky for that in February I tested normal IGF-1 with low GH. They usually adjust dosage based on the IGF-1 results. If my IGF-1 had been low with low GH as is typical then they'd after I started taking Genotropin they'd have adjusted my dosage when it tested in the normal range which may have left me still deficient and feeling bad. Because of my February results my doctor said she'll have to figure my 'normal' to be in the top end of the typical range.
And so the daily shots begin. I received my first round of meds last week. Today a nurse came my home and instructed Chris and I on how to handle those shots. He gave me my first dose and for a man who used to say he hated needles, he did just fine. I feel a little shaky but okay.
It’ll take weeks to adjust to it, months to see improvement. My next appointment is in June. My blood work then will show if I’m good on this initial dose or if it’ll need to be adjusted. Still it’s nice to have a treatable cause and to finally begin the treatment.
We've decided that replacement therapy is best for me and since my pituitary won't suddenly start producing it again, I'll be taking this for the rest of my life.
We've had some good news. Our insurance approved my prescription for Genotropin on the third week of March. Of course only then did they tell us they'd cover it like any other name brand prescription. We have a 30.00 per month co-pay but they'll 'review' it next year. However this year the Pfizer Bridge Program is going to cover the co-pay. I cannot express how much of a relief those two pieces of news were.
Another bit of interesting news is that on the day of my second stimulation test my IGF –1 was normal even though my growth hormone was low. Therefore my growth hormone could've been low for some time, weeks, months, years, there's is no way to tell. The initial growth of the tumor could've done the damage, the first surgery, the re growth, the second surgery, when and which of those events did it is anyone's guess. I'm lucky my IGF-1 was low in November because otherwise they wouldn't have tested me.
I'm also lucky for that in February I tested normal IGF-1 with low GH. They usually adjust dosage based on the IGF-1 results. If my IGF-1 had been low with low GH as is typical then they'd after I started taking Genotropin they'd have adjusted my dosage when it tested in the normal range which may have left me still deficient and feeling bad. Because of my February results my doctor said she'll have to figure my 'normal' to be in the top end of the typical range.
And so the daily shots begin. I received my first round of meds last week. Today a nurse came my home and instructed Chris and I on how to handle those shots. He gave me my first dose and for a man who used to say he hated needles, he did just fine. I feel a little shaky but okay.
It’ll take weeks to adjust to it, months to see improvement. My next appointment is in June. My blood work then will show if I’m good on this initial dose or if it’ll need to be adjusted. Still it’s nice to have a treatable cause and to finally begin the treatment.
How I Feel
My doctor wants me to write down how I feel now so I can come back after six months on Genotropin and be amazed at how much better I am. Within a year, she believes I’ll feel pretty darn good. I hope she’s right because right now it’s hard even to interact with my husband and boys. I won’t transform into a social butterfly in six months but I’d like to upgrade from extreme recluse to mostly a hermit at least.
My attempts at communication with anyone including friends and family have been dismal. Phone calls, letters and emails have been returned sporadically or not at all.
I'm exhausted. Everything is an effort, everyday, all the time. I go to sleep tired, I wake tired. No amount of rest changes it although getting little rest worsens it.
Concentrating, thinking, talking, even composing this is hard. I'm emotionally tired as well, moody, depressed and finding it almost impossible to interact with anyone. Because it's the deficiency of growth hormone that causes all the above depression medication helped little.
There’s nothing I can’t do but it’s frustrating for simple tasks to take extraordinarily long to complete. I write lists and try to work on something everyday because otherwise it feels like my life is passing me by while I sit in a fog of fatigue. It aggravates me for a simple thing like picking up some groceries, writing an email, doing the smallest thing on a home project, to take me hours to finish.
I feel 103 instead of 43. My skin is very dry and thin, looks like an old woman. My hair is fuzzy because it breaks and feels like straw. I walk most nights with the boys, usually a mile because I'm stubborn and refuse not to but even though we've been walking since last summer, its not easier.
I try hard to act normal but I know I'm failing. My poor hubby and kids need and deserve better and I feel I'm letting them down because I'm not ‘coping’ as well as I think I should.
Thats how I feel.
My attempts at communication with anyone including friends and family have been dismal. Phone calls, letters and emails have been returned sporadically or not at all.
I'm exhausted. Everything is an effort, everyday, all the time. I go to sleep tired, I wake tired. No amount of rest changes it although getting little rest worsens it.
Concentrating, thinking, talking, even composing this is hard. I'm emotionally tired as well, moody, depressed and finding it almost impossible to interact with anyone. Because it's the deficiency of growth hormone that causes all the above depression medication helped little.
There’s nothing I can’t do but it’s frustrating for simple tasks to take extraordinarily long to complete. I write lists and try to work on something everyday because otherwise it feels like my life is passing me by while I sit in a fog of fatigue. It aggravates me for a simple thing like picking up some groceries, writing an email, doing the smallest thing on a home project, to take me hours to finish.
I feel 103 instead of 43. My skin is very dry and thin, looks like an old woman. My hair is fuzzy because it breaks and feels like straw. I walk most nights with the boys, usually a mile because I'm stubborn and refuse not to but even though we've been walking since last summer, its not easier.
I try hard to act normal but I know I'm failing. My poor hubby and kids need and deserve better and I feel I'm letting them down because I'm not ‘coping’ as well as I think I should.
Thats how I feel.
3/1/10
Glucagon GH Stimulation Test
Again normal growth hormone level is 5 ng/ml. Glucagon raised my blood glucose from 84 (normal) to 172 (HIGH) in an hour as predicted then started to drop. This drop is supposed to stimulate the growth hormone. This drop can also cause nausea in a small percentage of people. (Me) A small percentage of people suffer it off and on for the rest of the day and the next. (Me) During the 4 hour test, GH should rise to 7-17 for a time. As last time my level started at less than 0.5, it remained unchanged for 2 hours, at 2 ½ hours it rose to 1.2, at 3 hours it dropped to 1.0, then dropped back to less than 0.5 the remainder of the test.
My endocrinologist reviewed the results and confirmed I have Adult Growth Hormone Deficiency. I have an appointment at OHSU on March 5th to discuss the pros and cons of GH therapy.
If we decide the pros of hormone therapy outweigh the cons then we wade into bureaucracy. Our insurance has already informed us it'll require documentation from my doctor supporting that it's medically necessary. Once they get that paperwork they'll 'review' it then IF they approve it they'll tell us how they'll cover it and what our cost will be. While I understand, since it's expensive, the insurance's desire to confirm it's necessary, it's frustrating not to have important information (our out of pocket cost). Why they couldn't state if it's approved it'll be x amount for you is a mystery.
My endocrinologist reviewed the results and confirmed I have Adult Growth Hormone Deficiency. I have an appointment at OHSU on March 5th to discuss the pros and cons of GH therapy.
If we decide the pros of hormone therapy outweigh the cons then we wade into bureaucracy. Our insurance has already informed us it'll require documentation from my doctor supporting that it's medically necessary. Once they get that paperwork they'll 'review' it then IF they approve it they'll tell us how they'll cover it and what our cost will be. While I understand, since it's expensive, the insurance's desire to confirm it's necessary, it's frustrating not to have important information (our out of pocket cost). Why they couldn't state if it's approved it'll be x amount for you is a mystery.
1/28/10
GHST Results
Normal growth hormone level is 5 ng/ml. After given Arginine to stimulate it the level should rise at least to 7 for at least a few hours. My level started at less than 0.5, after I was given the Arginine it rose to 0.6 for ½ an hour, then dropped back to less than 0.5 the remainder of the test.
The persistent, pain in the butt fatigue isn't all in my head darn it.
The next step is another GHST except instead of Arginine they'll use glucose. It'll be conducted by a different department of OHSU. This is for ‘independent’ confirmation of my low results mostly for the insurance company since growth hormone replacement is ‘non-standard’.
The test is scheduled Feb. 18th at 8:30 am.
The persistent, pain in the butt fatigue isn't all in my head darn it.
The next step is another GHST except instead of Arginine they'll use glucose. It'll be conducted by a different department of OHSU. This is for ‘independent’ confirmation of my low results mostly for the insurance company since growth hormone replacement is ‘non-standard’.
The test is scheduled Feb. 18th at 8:30 am.
Subscribe to:
Posts (Atom)