It's hard to believe it has been eight months since my last visit to OHSU. Originally scheduled for my standard six month check in March but there was too much upheaval with MIL's ongoing health issues and at home with my husband's so I put it off. Now that hubby is doing better and MIL, well, her's continues to deteriorate. She bounces between the hospital and assisted living with heart attacks and infections but we're come to the point of finally accepting you can't make someone do anything they don't want to do.
MRI results were 'consistent' with previous scan which means nothing changed. YEAH! That's what I want, boring nothing to talk about. That silly little tumor continues to stagnate.
My hormone testing went mostly okay however both GH and Thyroid, the two I take medications for were off. One was my fault. Stress levels at home were high and I wasn't taking care of myself properly. I was skipping doses of the genotropin and my growth hormone level was low. Doctor wanted to up my dose so I had to confess. Neither doc or hubby was pleased but both were understanding as long as I promised to take my daily shot from now on.
Thyroid was also low but that wasn't from me not taking my morning pill. It just was. So doctor bumped me back up to 125mg. I'm not looking forward to the next few weeks. As I've stated before for some reason my body hates it when the thyroid medication is adjusted up or down. It almost feels like I have a flu, achy and tired. I'll be glad when I'm past that.
Because of the low hormone levels and medication adjustments the doctor wants me back in 3-4 months to retest. :( Odds are I'm fine, just need to take my medication as I'm supposed to but anytime there is a change they watch me a little closer. There's always the chance that my pituitary will give up the ghost, cease to function so even though I'm sick of tests, really don't want any more blood drawn for the rest of my life, I'll go get it done late August or September.
5/17/13
9/10/12
Loss
After my MRI instead of heading home, we drove in the opposite direction. Chris had a nagging sense that he needed to see his father. It was a good but hard visit. Good in that we chatted, told stories, shared my good news, showed him silly pictures of the dogs and boys on the cell phone. Hard because Mike wasn't doing well and wanted to discuss what needed to happen when he died.
September 9th, 2012 in the early morning hours that still seem like night, my father-in-law passed. He'd been in poor health for a number of years - heart attacks, yes plural, congestive heart failure as a result, a stroke, diabetes and many infections. Our loss wasn't unexpected. Still he'd survived countless operations doctors warned he wouldn't and so despite logic the family almost came to believe he'd continue to defy the odds, almost.
Reaction to my good MRI is muted, we're pleased but can't muster enthusiasm. When something cool or funny or maddening happens, the thought - hey I need to call Dad, share this - still runs through Chris' head - then he remembers he can't.
That finality is hard.
September 9th, 2012 in the early morning hours that still seem like night, my father-in-law passed. He'd been in poor health for a number of years - heart attacks, yes plural, congestive heart failure as a result, a stroke, diabetes and many infections. Our loss wasn't unexpected. Still he'd survived countless operations doctors warned he wouldn't and so despite logic the family almost came to believe he'd continue to defy the odds, almost.
Reaction to my good MRI is muted, we're pleased but can't muster enthusiasm. When something cool or funny or maddening happens, the thought - hey I need to call Dad, share this - still runs through Chris' head - then he remembers he can't.
That finality is hard.
9/8/12
Move forward at last
It's always amazing to look back and have the impression that time flew. Twenty two months have passed since my last surgery, this is the point, this is the MRI that for the last six years has brought all progress to a halt. The hope was that the radiation succeeded in retarding the tumor, making it not grow. The wait to know if I can continue on or not is over.
My MRI findings were stable. Post-surgical changes are again seen in the sellar supraseller region. (scar tissue from the surgeries and radiation) The mass lesion (the tumor) is stable, no evidence of progression.
My blood work was also stable. No new function loss and both hormones I take replacement medication for tested in normal ranges, so no changes in dosage, no adjusting!
I cannot express how relieved I am, Chris and the boys are. I still have to test again in six months because my tumor was so aggressive but if that one is stable then I can go a full year between them.
Bottom line for the first time in six long years my pituitary tumor isn't growing!
My MRI findings were stable. Post-surgical changes are again seen in the sellar supraseller region. (scar tissue from the surgeries and radiation) The mass lesion (the tumor) is stable, no evidence of progression.
My blood work was also stable. No new function loss and both hormones I take replacement medication for tested in normal ranges, so no changes in dosage, no adjusting!
I cannot express how relieved I am, Chris and the boys are. I still have to test again in six months because my tumor was so aggressive but if that one is stable then I can go a full year between them.
Bottom line for the first time in six long years my pituitary tumor isn't growing!
8/1/12
Refill mess up
GH is a specialty drug so when my pharmacy's supplier messed up and didn't send it on time, I couldn't just go to another pharmacy and pick it up. I had to go without for four days. Doesn't sound like a long time but any disruption messes me up. Why? Just me, just how my body works with it, just is. Misery descended for the next few weeks. The pharmacy promised this will not happen again.
7/6/12
Levels checked
A quick trip up to OHSU to check on my GH and T4 level.
Growth hormone level is fine, no changes.
T4 finally increased unfortunately it increased too much so my dosage is being decreased to the level between what I'm on now and what I was on in March. So not looking forward to the adjustment period.
Growth hormone level is fine, no changes.
T4 finally increased unfortunately it increased too much so my dosage is being decreased to the level between what I'm on now and what I was on in March. So not looking forward to the adjustment period.
5/3/12
GH & Thyroid increase
My dear Mother has been on thyroid replacement for decades. She's never had a reaction, any trouble at all, starting medication or changing dosage. I tease her that she sucked up all my tolerances.
Unlike my mom when I start thyroid or change thyroid dosage I feel like I have a slight flu, excessively tired, achy, headaches, basically feel like crud for weeks to a month. Once I adjust concentration improves, its easier to think and energy level increases a little. Definitely worth it but I hate the process
GH is worse. When I start it, I have horrible daily headaches for a month or more. It's a miserable time. Slowly I adjust, it starts to help. Over time fatigue lessens a little, moods level and the odd feeling of feeling withdrawn from the world fades. The first couple weeks there were times I questioned if the misery was worth it. Now though the pain in my head is gone, Chris assures me he sees some improvement so I'm willing to go on.
Unlike my mom when I start thyroid or change thyroid dosage I feel like I have a slight flu, excessively tired, achy, headaches, basically feel like crud for weeks to a month. Once I adjust concentration improves, its easier to think and energy level increases a little. Definitely worth it but I hate the process
GH is worse. When I start it, I have horrible daily headaches for a month or more. It's a miserable time. Slowly I adjust, it starts to help. Over time fatigue lessens a little, moods level and the odd feeling of feeling withdrawn from the world fades. The first couple weeks there were times I questioned if the misery was worth it. Now though the pain in my head is gone, Chris assures me he sees some improvement so I'm willing to go on.
3/23/12
March 2012 testing result
Once again I had an unremarkable MRI. Two sentences highlight the important findings. The pituitary lesion, compatible with pituitary adenoma is unchanged. The last line of the report is the same as last time, stable left lateral ventricle atrial lesion likely representing intraventricular meningioma. Which means both tumors remain as they were. That's what was expected. It's good news.
I also had blood work to check on my pituitary and I haven't lost any further function.
My TSH was on the low end and I'm still experiencing fatigue so my thyroid replacement is being increased.
Dr. Fuss has approved my restarting growth hormone replacement. I'll have to return in July to check my blood levels on just the GH and thyroid to monitor the changes, see if the medication dosage needs adjustments.
9/9/11
MRI results
As expected this MRI was undramatic. The report is only a couple paragraphs and ends with this summery. A stable examination compatible with pituitary adenoma. Translation the tumor remains the same. According to Dr. Fuss, my oncologist these kind of tumors rarely shrink all that much but turn into scar tissue. The last line of the report is stable left lateral ventricle atrial lesion likely representing intraventricular meningioma. Translation my other tumor that has had the good manners not to trouble me remains the same.
In December I've a blood work appt. to check on my pituitary function. Since I had radiation I can gradually lost function over the course of years so they'll continue to monitor me. I hope my TSH is within normal range then so Dr. doesn't decrease my thyroid med. I still tired way too easy IMHO and the thought of even less energy doesn't thrill me. Doctors say be patient. I'm still working on that.
In December I've a blood work appt. to check on my pituitary function. Since I had radiation I can gradually lost function over the course of years so they'll continue to monitor me. I hope my TSH is within normal range then so Dr. doesn't decrease my thyroid med. I still tired way too easy IMHO and the thought of even less energy doesn't thrill me. Doctors say be patient. I'm still working on that.
9/2/11
Catching up
Much of these last months I've struggled with medication increases. Although I know others who've had no problem with any dose of levothyroxine (hi mom) I do. Nothing to do with pituitary function or lack there of, just me. I've horrid headaches, become more lethargic (like I need that lol) at each increase, over time I adjust am okay then pretty good then my body reacts, thinks I've too much thyroid and my damaged pituitary works with ruthless efficiency, lowers my TSH which lowers the amount of thyroid I produce - end result - levels exactly where I started. :( Then I ask for another increase and the cycle repeats.
In June I increased 100mg of the thyroid medicine however my TSH is now suppressed. My endo was firm that we'd try this for 6 months but no more increases and if my TSH is still suppressed at my next blood draw in Dec. then she'll start decreasing me. I'm not sure how I feel about that.
I worry that decreasing will leave me a zombie on the other hand I worry that long term suppressed TSH will lead to other medical issues and I've enough thank you.
I'm three months into this dose. I still tire too easy and often in my opinion. Doctors caution with the radiation I can continue to suffer fatigue this year, I can continue to lose pituitary function, I had 3 major surgeries in 4 years and I should be patient with myself. That's hard.
I'm also still having fairly regular headaches, not daily but often. I'm unsure if that's due to the medication, the stress I'm trying to cope with or the heat.
I don't handle heat well. I don't really sweat so I overheat annoyingly quick, red in the face, pounding headache in minutes. Its unfun and restrictive. We keep outings near water so we can stop and put mama in the river to cool me off. Would be funny if it wasn't me. Chris keeps a spray bottle of water to squirt me, keep me semi cool on summer family drives. I feel like Stitch from the Disney movie.
Still I'm able to sleep without sleep aid, while I'm slow, I can do things as long as I'm patient with myself and those are good things. The key and one I struggle with is patience.
My next MRI is Sept. 7th. I'm not worried. Almost 10 months post surgery I've always been fine, it's next year's MRI, the one at 18 months post surgery that will stretch my nerves to the screaming point. That's always been the point that re growth has been discovered. No blood work on this visit, I don't see the endo at all this time because I just saw her in June. Will have all that lovely stuff done in December. I will see Dr. Fuss the oncologist though, fingers crossed he will be happy with my tumor's status.
In June I increased 100mg of the thyroid medicine however my TSH is now suppressed. My endo was firm that we'd try this for 6 months but no more increases and if my TSH is still suppressed at my next blood draw in Dec. then she'll start decreasing me. I'm not sure how I feel about that.
I worry that decreasing will leave me a zombie on the other hand I worry that long term suppressed TSH will lead to other medical issues and I've enough thank you.
I'm three months into this dose. I still tire too easy and often in my opinion. Doctors caution with the radiation I can continue to suffer fatigue this year, I can continue to lose pituitary function, I had 3 major surgeries in 4 years and I should be patient with myself. That's hard.
I'm also still having fairly regular headaches, not daily but often. I'm unsure if that's due to the medication, the stress I'm trying to cope with or the heat.
I don't handle heat well. I don't really sweat so I overheat annoyingly quick, red in the face, pounding headache in minutes. Its unfun and restrictive. We keep outings near water so we can stop and put mama in the river to cool me off. Would be funny if it wasn't me. Chris keeps a spray bottle of water to squirt me, keep me semi cool on summer family drives. I feel like Stitch from the Disney movie.
Still I'm able to sleep without sleep aid, while I'm slow, I can do things as long as I'm patient with myself and those are good things. The key and one I struggle with is patience.
My next MRI is Sept. 7th. I'm not worried. Almost 10 months post surgery I've always been fine, it's next year's MRI, the one at 18 months post surgery that will stretch my nerves to the screaming point. That's always been the point that re growth has been discovered. No blood work on this visit, I don't see the endo at all this time because I just saw her in June. Will have all that lovely stuff done in December. I will see Dr. Fuss the oncologist though, fingers crossed he will be happy with my tumor's status.
5/2/11
Tomorrow was supposed to be
the day I went in for testing, just hormone levels, but my endo moved my appointment up. She had me come in April 19th, my period of feeling better had gone. :(
First I stopped improving. That wasn't too bad. I thought perhaps I'd reached the best I could feel on the 50mg and was okay with that. I knew it might take awhile before I reached the correct maintenance dose. I contacted my endo and asked about increasing my dose. The reply: your body needs time at least six weeks to fully adjust to the hormone replacement, we'd evaluate the situation at my appointment.
Then I started to back slide. That bothered me. I explained it away, maybe the trip to see family wore me out, then maybe I'm just having a bad day, a bad week, then I ran out of barely believable excuses. I could understand not getting better but losing ground was unnerving. Endo moved up my appointment, earliest she could, six weeks from my last but she wasn't surprised by my tale of woe.
Nothing dire is going on. I'll be fine. That I felt better for a time is good, means replacing the thyroid hormone helps me, improves my life quality. Okay I then whined why am I starting to feel like crud again? Well basically my body is working against me.
In simple terms the pituitary and the thyroid work in a sort of feedback loop. The pituitary is supposed to sense when the thyroid hormone is too low and it increases TSH thyroid stimulating hormone. When the thyroid senses an increase in TSH it is supposed to increase thyroid hormone T4. The actually process is more complicated but that's the basic concept.
Since my T4 is low, causing all the nasty hypothyroid symptoms, endo put me on thyroid medicine which replaces/increases the T4. My T4 has been low for some time, years, but it was only after this last surgery when hormones worsened and I was blunt - I'm sick of being a spectator in my life- that I was put on thyroid medication. Well I may be sick to death of feeling like crap but my body thinks that's normal and wants to keep the status quo. The medication did it's job. My T4 increased, I felt good then the pituitary sensed the new level of T4, decreased it's TSH, which decreased the T4 which meant I felt crappy again. Despite the medication six weeks later my T4 now was the same as it was before. I was not happy.
Endo says that happens. Joy. The answer is to keep increasing the medication a little at a time every six weeks to three months. Too much medication could really depress my TSH and that would be bad. Too little and nothing changes. The goal is to reach the dose where I feel good, the medicine puts enough T4 in my system and my pituitary can't or stops lowering it. She increased me to 75mg. This could be the dose or I could be still working toward my needed level for the next year. I'm supposed to be patient.
It's almost been two weeks on the increase and this one hit me like a ton of bricks. Instead of slowly starting to feel better, I felt like I did following radiation. So lethargic I actually found myself considering if I really need to go to the bathroom that bad because getting off the bed and walking seemed like an extreme effort. Endo says that happens sometimes, give it time, weeks - be patient.
The last few days seem a little better. I'm doing some things but I'm resentful of my body's weakness. I go to the store, a couple bags of groceries because I'm too tired to get more then have to sit around for a while until I have enough umph to do anything else. I couldn't do my nightly walk with the boys for almost a week and am forcing myself to now but it wipes me out. Painfully slow progress in the house, in my writing, in the yard. Life moves on ten steps or more for every one I take. Endo wasn't surprised. Patience is difficult. I'm 44 I don't want to feel 84. Time is a precious commodity.
First I stopped improving. That wasn't too bad. I thought perhaps I'd reached the best I could feel on the 50mg and was okay with that. I knew it might take awhile before I reached the correct maintenance dose. I contacted my endo and asked about increasing my dose. The reply: your body needs time at least six weeks to fully adjust to the hormone replacement, we'd evaluate the situation at my appointment.
Then I started to back slide. That bothered me. I explained it away, maybe the trip to see family wore me out, then maybe I'm just having a bad day, a bad week, then I ran out of barely believable excuses. I could understand not getting better but losing ground was unnerving. Endo moved up my appointment, earliest she could, six weeks from my last but she wasn't surprised by my tale of woe.
Nothing dire is going on. I'll be fine. That I felt better for a time is good, means replacing the thyroid hormone helps me, improves my life quality. Okay I then whined why am I starting to feel like crud again? Well basically my body is working against me.
In simple terms the pituitary and the thyroid work in a sort of feedback loop. The pituitary is supposed to sense when the thyroid hormone is too low and it increases TSH thyroid stimulating hormone. When the thyroid senses an increase in TSH it is supposed to increase thyroid hormone T4. The actually process is more complicated but that's the basic concept.
Since my T4 is low, causing all the nasty hypothyroid symptoms, endo put me on thyroid medicine which replaces/increases the T4. My T4 has been low for some time, years, but it was only after this last surgery when hormones worsened and I was blunt - I'm sick of being a spectator in my life- that I was put on thyroid medication. Well I may be sick to death of feeling like crap but my body thinks that's normal and wants to keep the status quo. The medication did it's job. My T4 increased, I felt good then the pituitary sensed the new level of T4, decreased it's TSH, which decreased the T4 which meant I felt crappy again. Despite the medication six weeks later my T4 now was the same as it was before. I was not happy.
Endo says that happens. Joy. The answer is to keep increasing the medication a little at a time every six weeks to three months. Too much medication could really depress my TSH and that would be bad. Too little and nothing changes. The goal is to reach the dose where I feel good, the medicine puts enough T4 in my system and my pituitary can't or stops lowering it. She increased me to 75mg. This could be the dose or I could be still working toward my needed level for the next year. I'm supposed to be patient.
It's almost been two weeks on the increase and this one hit me like a ton of bricks. Instead of slowly starting to feel better, I felt like I did following radiation. So lethargic I actually found myself considering if I really need to go to the bathroom that bad because getting off the bed and walking seemed like an extreme effort. Endo says that happens sometimes, give it time, weeks - be patient.
The last few days seem a little better. I'm doing some things but I'm resentful of my body's weakness. I go to the store, a couple bags of groceries because I'm too tired to get more then have to sit around for a while until I have enough umph to do anything else. I couldn't do my nightly walk with the boys for almost a week and am forcing myself to now but it wipes me out. Painfully slow progress in the house, in my writing, in the yard. Life moves on ten steps or more for every one I take. Endo wasn't surprised. Patience is difficult. I'm 44 I don't want to feel 84. Time is a precious commodity.
3/8/11
Progress Report
My endocrinologist decided on Feb. 24th to increase my thyroid medication. For a time daily headaches occurred, not bad but for me headaches of any kind leave a whisper of worry. Is it caused from medication, teenagers, overtired or the tumor? It was the me adjusting to the medication. The headaches are gone now.
Less than 2 weeks on the increase and I feel better. I've more energy, moods more stable and I CAN THINK! Brain fog is a frustrating result of low hormone, like a person's brain becomes as tired as their body. I'm not 100% but think I've improved 50 or 60% so I'm cautiously hopeful.
Another frustrating aspect of all this time when I'm down because of the tumor is that life keeps trucking on by. All the things I've started or I'm responsible for taking care of sit gathering dust or grow worse. Another chunk of my life is gone, again. It's bitter truth to accept.
But whining never solved a thing.
So.
I'm working on all those pesky things that have been ignored or put off, exercise (resumed family walks - worked up to a mile and a half nightly now ) final revisions on my manuscript (will finish in a week or so and though I've learned tons from writing it, I've been stalled so often on the project for 'health' stuff that it feels like years, oh wait it has been years since the rough draft. I'm SO ready to move on, write new stories) the bathroom floor had dollar store tiles (20 bucks lasted 2 years) and they started dying a few months back (I was a little busy then). I've been scrapping them up for weeks now (tire easily but am stubborn, persistent) floor is clear tonight :) Also working on our family photo video I do every year, usually complete around Christmas time, but am hoping by summer. The list of stuff to address is long, would overwhelm me to list so won't :) but it feels good to make some progress. A couple things at a time, one day at a time.
My next appointment is on May 3rd, for Endocrinology, to test my hormone levels, see how my medication is working and if it needs adjusting.
My next MRI is Aug. 19th. Because I had radiation I'll be scanned every 6 months for at least the next 2 years. If all goes well after that, they'll start stretching them out.
Less than 2 weeks on the increase and I feel better. I've more energy, moods more stable and I CAN THINK! Brain fog is a frustrating result of low hormone, like a person's brain becomes as tired as their body. I'm not 100% but think I've improved 50 or 60% so I'm cautiously hopeful.
Another frustrating aspect of all this time when I'm down because of the tumor is that life keeps trucking on by. All the things I've started or I'm responsible for taking care of sit gathering dust or grow worse. Another chunk of my life is gone, again. It's bitter truth to accept.
But whining never solved a thing.
So.
I'm working on all those pesky things that have been ignored or put off, exercise (resumed family walks - worked up to a mile and a half nightly now ) final revisions on my manuscript (will finish in a week or so and though I've learned tons from writing it, I've been stalled so often on the project for 'health' stuff that it feels like years, oh wait it has been years since the rough draft. I'm SO ready to move on, write new stories) the bathroom floor had dollar store tiles (20 bucks lasted 2 years) and they started dying a few months back (I was a little busy then). I've been scrapping them up for weeks now (tire easily but am stubborn, persistent) floor is clear tonight :) Also working on our family photo video I do every year, usually complete around Christmas time, but am hoping by summer. The list of stuff to address is long, would overwhelm me to list so won't :) but it feels good to make some progress. A couple things at a time, one day at a time.
My next appointment is on May 3rd, for Endocrinology, to test my hormone levels, see how my medication is working and if it needs adjusting.
My next MRI is Aug. 19th. Because I had radiation I'll be scanned every 6 months for at least the next 2 years. If all goes well after that, they'll start stretching them out.
2/21/11
MRI post radiation
An MRI, blood work and three doctor visits all on Feb. 18th makes for a long, long day but I schedule them like that to avoid making several 2 hour one way trips to OHSU. My darling husband took a vacation day to drive and accompany me, for support and because I tire easily. We were concerned about me attempting to drive home safely afterwards.
Dr. Fuss, the radiation doctor, Oncologist, was very clear during all my visits prior to this one that his goal for the radiation treatment of my tumor was to keep it from growing again and to preserve my eyesight. Given my history, the type of tumor and how aggressive the darn thing had been, we were to expect no shrinkage, at all, ever, well possibly years from now. Radiation works slowly. This MRI was six weeks after the completion of radiation. We, me, Chris, the boys, my family, the doctors, all hoped to see no growth. That would be a good result. My MRI results were better than expected.
The tumor shrank, still there, but clearly smaller. Dr. Fuss said he kept flipping back and forth to make sure he had the right patient. He checked to make sure I hadn't had another surgery during the six weeks, lol. He/They haven't seen that result before. Usually it's 6 months or better before anything encouraging is seen. I was the first pituitary patient to do 5 day radiation (same amount of radiation as a person receives over 6 weeks, given in 5 days) and Dr. Fuss said if this is the result of that, it may be the way they treat people like me from now on.
Am I excited? Mostly. Chris is, boys are, Mom and Aunts and etc... are. Chris says we need to celebrate the small victories along the way. I'm trying. It's great news. It's just... well I've had good MRI's before. At 3 months post surgery (which this is), 6 months from then (all good post last two surgeries) it's that pesky year past that, the 18 months post surgery MRI that has nailed me with disheartening news both times before. I just can't get jumping up and down excited yet. I need to pass that milestone first.
Hormone test results: Cortisol still hanging on in normal range :), thyroid levels improved after being on medication for two months - still waiting to see if they will keep me on this dose or increase it, still waiting on GH levels (IGF1) but Dr. Fleseriu said they want to wait another year before (if the tumor behaves) putting me back on GH replacement.
How do I feel? Weary, fatigued, all in, beat, broken-down, burned out, collapsing, consumed, dead on my feet, dog-tired, done in, drained, drooping, flagging, petered out, played out, pooped, prostrated, run-down, spent, tuckered out, wasted, worn down, worn out - gotta love thesaurus :)
I'm better than last month though and I hope next month I improve as well.
Dr. Fuss, the radiation doctor, Oncologist, was very clear during all my visits prior to this one that his goal for the radiation treatment of my tumor was to keep it from growing again and to preserve my eyesight. Given my history, the type of tumor and how aggressive the darn thing had been, we were to expect no shrinkage, at all, ever, well possibly years from now. Radiation works slowly. This MRI was six weeks after the completion of radiation. We, me, Chris, the boys, my family, the doctors, all hoped to see no growth. That would be a good result. My MRI results were better than expected.
The tumor shrank, still there, but clearly smaller. Dr. Fuss said he kept flipping back and forth to make sure he had the right patient. He checked to make sure I hadn't had another surgery during the six weeks, lol. He/They haven't seen that result before. Usually it's 6 months or better before anything encouraging is seen. I was the first pituitary patient to do 5 day radiation (same amount of radiation as a person receives over 6 weeks, given in 5 days) and Dr. Fuss said if this is the result of that, it may be the way they treat people like me from now on.
Am I excited? Mostly. Chris is, boys are, Mom and Aunts and etc... are. Chris says we need to celebrate the small victories along the way. I'm trying. It's great news. It's just... well I've had good MRI's before. At 3 months post surgery (which this is), 6 months from then (all good post last two surgeries) it's that pesky year past that, the 18 months post surgery MRI that has nailed me with disheartening news both times before. I just can't get jumping up and down excited yet. I need to pass that milestone first.
Hormone test results: Cortisol still hanging on in normal range :), thyroid levels improved after being on medication for two months - still waiting to see if they will keep me on this dose or increase it, still waiting on GH levels (IGF1) but Dr. Fleseriu said they want to wait another year before (if the tumor behaves) putting me back on GH replacement.
How do I feel? Weary, fatigued, all in, beat, broken-down, burned out, collapsing, consumed, dead on my feet, dog-tired, done in, drained, drooping, flagging, petered out, played out, pooped, prostrated, run-down, spent, tuckered out, wasted, worn down, worn out - gotta love thesaurus :)
I'm better than last month though and I hope next month I improve as well.
1/19/11
Some people
lose weight due to radiation. The body trying to repair, heal, needs energy and can burn calories. Has this wonder of nature happened to me? No, I've gained instead :( Why?
1. Fatigue = Lack of motion
2. Comfort food - I try to be mature about needing a 3rd surgery, radiation & failing hormones but haven't always succeeded, whining and chocolate were then involved.
3. Secondary Hypothyroidism aka pituitary failing to stimulate thyroid properly = slowed metabolism. While replacement hormone won't magically make me skinny, eventually it's supposed to restore my 'normal' metabolism. I'm on the lowest dose now. My doctor will slowly increase that in six week intervals until my test results are 'normal' so I may not reach 'normal' for months.
Sigh. Patience. I must remember patience.
1. Fatigue = Lack of motion
2. Comfort food - I try to be mature about needing a 3rd surgery, radiation & failing hormones but haven't always succeeded, whining and chocolate were then involved.
3. Secondary Hypothyroidism aka pituitary failing to stimulate thyroid properly = slowed metabolism. While replacement hormone won't magically make me skinny, eventually it's supposed to restore my 'normal' metabolism. I'm on the lowest dose now. My doctor will slowly increase that in six week intervals until my test results are 'normal' so I may not reach 'normal' for months.
Sigh. Patience. I must remember patience.
1/12/11
A week and a half later
Day to day details repetitious, boring. This is when news of note comes slowly.
Fatigue is still high, lessening only a fraction every day. I remind myself not to measure progress by the hour or day but against how I felt last week. I'm able to concentrate longer. I can read a book without paying for the exercise with a headache. I vacuumed the living room, took me several days, had to stop to rest all to often but hey I did it. Sad thing is now it needs it again : (
Odd fact: As tired as I am, as often as I am, I still suffer insomnia, have for over a year now. Without a sleep aid, I don't sleep.
Fatigue is still high, lessening only a fraction every day. I remind myself not to measure progress by the hour or day but against how I felt last week. I'm able to concentrate longer. I can read a book without paying for the exercise with a headache. I vacuumed the living room, took me several days, had to stop to rest all to often but hey I did it. Sad thing is now it needs it again : (
Odd fact: As tired as I am, as often as I am, I still suffer insomnia, have for over a year now. Without a sleep aid, I don't sleep.
Am I better? Yes.
Am I as well as last summer? No.
Will I improve? Each day has that promise.
Patience and time is required.
1/6/11
All Done
Except for being way tired, easily fatigued by any activity, breathing, crossing the room, I tolerated the last treatment better. Some nausea the day of then faded away, thank God.
The fatigue will linger for weeks to months but every day that passes, I'm a little better.
I went to the grocery store yesterday all by my lonesome :) I then came home, headed straight back to the couch and my soft flannel comforter. The boys came home from school a half hour later. John with some assist from his friends, thanks Tyler & Anson, brought in the food stuff and Michael put it away. I'm blessed with wonderful sons.
The fatigue will linger for weeks to months but every day that passes, I'm a little better.
I went to the grocery store yesterday all by my lonesome :) I then came home, headed straight back to the couch and my soft flannel comforter. The boys came home from school a half hour later. John with some assist from his friends, thanks Tyler & Anson, brought in the food stuff and Michael put it away. I'm blessed with wonderful sons.
12/31/10
Four treatments done, one to go and how am I?
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.
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.
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.
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