Doctors

I've come to realize that doctors don't know any more than the average person.  With their schooling and training, they may be better at investigation and ruling things out, but from what I see they are in the same boat we are.  They don't really know.
I am so frustrated with the lack of availability of doctors and them not showing any concern.  We sit and wait for lab results and a possible solution for a few days here, a week there and are no closer to solving a problem.
For 3 weeks now, Aly has been on the growth hormones.  For 3 weeks now, Aly has been having to get up, during the night, and (sorry for the lack of a better term) has had to pee 3 or 4 times a night.  She is back to where she was before we figured out she had the brain tumor.  The medication that is supposed to control this is not working like it was before.  I can only assume it is the growth hormones throwing her system off.  Everything was going great until then.  Yet, the Endocrine doctor wants to run labs to rule things out.  So, she sends (via regular snail mail mind you) lab orders to our family clinic so we don't have to drive cross country for a blood draw.  Me, being the efficient, gotta get things done now type, gets Aly into the clinic the day after I receive the orders.  The clinic says they will fax the doctor the results that same afternoon.  No call that day.  No call the next day, so I call the doctor's office only to find out she is off for 5 days.  I talk with the nurse and she says that the other doctors will probably not be able to help because they don't know Aly's history so I should wait until the dr. comes back.  GRRR...in the meantime Aly is not getting sleep at night, is tired all the time (wonder why??)  and is in the bathroom constantly.  I was waiting to see if I could adjust her med. dosage to see if that helped at all.  Well, I went ahead and adjusted it anyways.  Imagine my lack of surprise when the increase in dosage helped!  It still isn't completely solving the problem, but it decreased her nightly bathroom visits from 3 or 4 to 1 or 2.
Finally, Tuesday rolled around and the apologetic doctor calls.  Aly's sodium level was fine.  With Aly's diabetes insipidus it can be dangerous for her to pee too much or not enough.  If her sodium levels swing too much she could have headaches, even seizures.  So, that is what they were checking.  Even with the increased dosage there were no issues there.  But, now that doesn't really solve the issue.  I talk with her and ask what can be done.  Of course, she wants to rule out everything else, so more labs were ordered to check Aly's thyroid, hormone levels, and to make sure there is no bladder infection, etc.  So, back to the lab we go, yesterday.  Now, I'm waiting for another phone call.  GRRR...
When Aly started the growth hormones we were told they may affect her medication, but she said it is typically affects people so they don't need as much medication.  So, par for the course, Aly is the exception once again!  The dr. didn't give any concrete answers.
I hate this.  I hate the way it has affected Aly.  I hate that she is tired, not getting sleep, not feeling as good as she was 3 weeks ago.  The growth hormone was supposed to "give her a better sense of well-being."  She seems to be getting the opposite.  I hate being helpless and not being able to do something to help her.  I hate that she has to go through ANY of this.
On another side, I just read an article in CURE magazine (cancer magazine) about how ALL cancer patients should go through rehabilitation therapy to help them deal with fatigue, strength, etc.  and I sit and wonder why nothing like that was offered for Aly.  We had to pursue such things related to her vision loss.  I had been thinking, prior to reading this article, that it seemed so weird that there isn't any follow up care after all these treatments and seeing how weak Aly was and thinking why isn't more done?  It is like they did everything they could to cure the cancer so their work is done.  A check up and MRI every 3 months and that is it.  Nothing to help her get back to where she was before the diagnosis.  Aly is still weak, still tired a lot and I sit here and wonder why.  How long should chemo and radiation affect a person?  Is it still from that or is it due to all the hormonal drugs she's taking.  Is she not getting enough of what she needs?  I guess I have more questions to ask.  Then it is back to more appointments, more poking, waiting, missing work and Aly missing fun time.  Which is worse?

I just don't know....  

When it rains, it pours, literally!

I'm sorry to be so neglectful with my blog.  We have been busy, for what seems like every minute of every day lately.  I'm pretty sure I've mentioned that my baby boy is graduating from high school, tomorrow as a matter of fact!  In the midst of party planning, our sump pump decided to give out, during the recent heavy rains, and our basement flooded.  Not what we needed at this moment in time!  We had (the operative word here is had) a finished basement and Tom's room was down there.  Now, Tom has been displaced to our pink guest room (used to be Aly's room) and all the furniture, that was in the basement, is now in our garage where we were planning to host the party!  Our carpet is gone.  Part of the wall would not dry so they had to take that apart.  There are no businesses that install carpet quickly, unless you buy really cheap carpet.  We will be moving furniture a few times I guess!  The hardest part is losing some precious mementos that we had.  Tom had some autographed memorabilia that fell off his wall while they had the blowers going to dry out the walls.  I had a photo book from a trip we took to D.C. that was damaged.  That kind of stuff is difficult to replace and is hard to lose.  

Our lives have consisted of meeting repairmen, shopping for party supplies, trying to repair our yard after the pool installation (not easy when it was raining everyday!),  trying to organize and get ride of things that came out of the basement storage, doing paperwork for college entrance, etc., etc., etc.!  Let the fun times continue!  Also, due to the heavy rains, the pool company needs to come out and fix the pool feet that have sunk down into the fabulous clay soil, that we love.  To do this, they will need to come out, drain the pool, move it, regrade underneath, reset the pool and we will have to refill it!  Oh, joy!  "An easy fix" according to the installer!  Can you tell our stress levels are maxed??

Aly started her growth hormone therapy in the midst of all this too.  It consists of a shot, before bed, every night.  She has been doing it all by herself.  They came out to show her how to do it and that night she started.  The first time, we could see the apprehension on her face and she actually held her breath while inserting the needle.  She finally breathed a sigh of relief when she completed it.  She is a brave soul!    The system Aly has is great.  It is a little pen that holds a cartridge with multiple doses.  She has to change the needle everyday, but it is very slick and easy to do.  It is the smallest needle I've ever seen and Aly said it just feels like a little pinch.  I'm relived for her, but still sad that she has to go through this hassle. 

 

That's all for now!  I have to get back to party preparations!