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.
9/9/11
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.
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