Journal

Well, joy of all joys...the tumour is growing again.  It's not growing quickly - at least I think it's not, but it IS growing.  IGF-1 is up again.  The digestive tract is doing somewhat better but I think that's related to the fact that I don't work anymore.  I got my lay off notice and my last day was the 14th of September.  I'm SO relieved.  I'm not planning on working again until I figure out which direction we are going with the treatment of this disease.  They keep upping my thryoid medication in addition "and" my colon is moving very slowly.  I was diagnosed with an extra long colon and very very slow moving.  The meds didn't help it.  They seem to affect the main nerve in the stomach.  Now we are looking at a possible re-section to remove some of the excess length.  Maybe that will help that issue, but I wonder what we do about the acromegaly.

I'm supposedly not a candidate for any more radiation since I have already had one high dose.  I was so hoping that maybe proton beam would help, but that's out the window.

The radio-oncologist wants to talk to the neurosurgeon and have an appointment with me and they want me to talk to the endo on the same day.  Sounds like a pow wow.  I've never managed to get 3 different doctors together in the same room.  Sounds interesting.

If you have had a 2nd surgery, can you share your experience and any words of wisdom? 

Let's see, where to begin. Grand daughter went home and left one quilt top that she finished herself for Grandma to experiment on with the quilt machine.  She also made a baby quilt for a new cousin all by herself. I am so proud of her!  Still is pretty warm up here still but we are getting our cooler weather making short appearances.  Oh yeah!  Get to clean up the basement and set up the new toy and try quilting tops and backings together. 

Wonder of all wonders, we got the boat in the water and went salmon fishing. We actually caught something thanks to a friend of my husbands who showed us how to fish up here.  Based on the cost of the boat each pink salmon (we caught 2) cost about 7500 a piece.  The experience - priceless..... For everything else there is mastercard.(ha!)  We are going to go back out on Thursday if I can get my carcass up that early when it's kind of cool.  I think I shall have to be sandblasted out of bed for that one, but we'll see if we catch anything.

Blood work tomorrow or Thursday.  Growth hormone is going back up and I'm on Somavert, the last of the trilogy.  I'm waiting to see what the MRI on the 4th will bring.  If the tumor is still stable, I need to try to figure out how it can "increase" the hormone secretion after it has been operated on and fried already.  I still don't get that one. 

I need to go wrap a couple of gifts and get our fishing expedition num nums organized.  Wish me luck on both counts

Ah yes - it has finally cooled down in the northwest again.  I feel human.  Nothing like sleeping on the basement floor because it's so hot and no air conditioning.  In the mean time, the grand daughter has shown up for her summer visit and I'm in pig heaven.  She is a lot like me and we spend time hanging out in the basement and sewing.  We like to take long walks and pick blackberries.  They are all over the place up here and we have the battle scars that go along with picking.

Regarding the acromegaly, I've made my peace with it and have finally managed to just accept that I have it and incorporate it into my lifestye. The first few years, I was petrified of dying and all the problems I had.  I have since discovered that I'm not in danger of dying and all these changes and effects go along with the acro territory.  Now I'm just trying to find out how to get the best quality of life while I am still around.  As I have seen from this board, almost all of us have residual tumor and we will have to deal with the effects from now on, unless a miracle happens and the radiation kicks in in 5 to 10 years. 

One of my things that I had to do was give up a job I had been striving for years for.  But the side effects of the acromegaly that the stress causes wasn't worth the money.  It took me several months to make the decision but it has really made a difference in quality of life.  I don't have to worry about trying to juggle all the demands of a killer job while I am dealing with juggling all the doctor appointments, blood work and medications that I have to deal with.  Even travel is a bit difficult with all this and that has always been a favorite hobby of mine.  I'm content now with just enjoying family visits and doing some short driving trips.  I find that I get fatigued more than I ever used too.  I plan on taking six months to a year off to try to recuperate  some and then look for contract work.  I need to bring something in but I need to try to balance that with lifes other issues.

I'm grateful to have found this group.  It makes me smile when I read topics like "looking at the acromegaliac" because I have that happen to me so much.  I feel like a circus freak some times.  The funny part is -  some of the doctors other than the endos come across like they are in such awe.  It just cracks me up some times. 

I plan on enjoying what's left of the northwest summer and enjoying my life.  As Rose said once, when the night sky is the darkest the stars shine the brightest.