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.
3/8/11
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.
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