Thursday, April 30, 2009

Hope... or Lack Thereof

Some days hope eludes me. I went to bed last night with a headache and in tears. This morning is starting the same way. In the words of Forrest Gump "Sometimes there just aren't enough rocks". I've thrown all my rocks, and I'm still feeling heartbroken. Between the medical stuff and financial problems I handle it; until I add another thing to tip the scale.

Nick is graduating in June, only 6 weeks from now. While I should be celebrating, instead it just gives me more to worry about. He has Sr. Ball in 2 weeks; tickets are $150.00! Besides tickets we need to rent a tux, buy a corsage, what else? Then there's Sr. picnic, and Sober Grad Night and Sr. Sunrise and, and, and, the list goes on. I have the time, just not the money or the mindset.

Even this all falls back on THE ILLNESS. While I watch one child move forward it's hard not to see the other held back by disease. Both kids always loved school and all the social stuff that goes with it. I don't think Alex resents it as much as I do. For her it's become a way of life. Of course that just breaks my heart even more. No football games and dances, no boyfriends and parties for her. Graduation? I just don't know. We are coming to the end of her sophomore year and she should have earned 160 credits toward graduation at this point. She might have 50 by June. She plans on college someday, and I can only hope and pray. Even her choices for the future are dictated by her health. Health insurance will always be an issue. So much for telling her to let her heart lead her to a career choice, instead it's "find a career where you can get good company insurance with no clause for preexisting conditions".

BTW- still waiting to hear from the surgeon's office.

Monday, April 27, 2009

Still Waiting...

We expected to hear back from the surgeons office the end of last week with a date. No such luck; I called them on Thursday to give a gently nudge. The woman I talked to said that the day we were there they had 41 patients instead of their normal 10-15 and all needed to get scheduled for surgery. They are just working their way through the list. So, no call Friday either and I'm afraid to leave the house today. I have a fear that if they call and miss me instead of calling my cell they will continue down their list and we will be moved to the bottom. Oh well, I'm meeting a friend for coffee while her mom is in surgery this afternoon. Alex says she will answer the phone if the surgeons office calls, and tell them to try me on my cell. If I don't hear from them today I'll call them tomorrow. My patience is wearing thin as usual.

Monday, April 20, 2009

Pay It Forward

Recently a Cushing's patient, Kristen, invited me to become a member of her Meet-Up Group for Cushing's patients and survivors. It's a virtual group, we won't actually be meeting face to face. Members are sponsors and sponsees, like AA; those who have been through it are there to help those who need support. I've already emailed back and forth with a few "sponsees" and it feels good to be helping someone. Or at least I think I'm helpful!

Sometimes I wonder if there is a path I'm supposed to be finding here. Maybe God has a plan I'm not aware of? A friend of ours was recently injured and I spent 2-3 hours at the hospital every day with him for over a week. I know he thought I was crazy to be there all the time, but I have this total conviction that every patient needs an advocate (they just don't always know it). Maybe a few years down the road this will all become clear to me? I wonder if there is an income potential for this? On the other hand maybe a few years down the road I will be fighting the same battle, older and wiser still.

Saturday, April 18, 2009

Statistics from Dr. Duh

Prior to yesterday we had been told BLA would offer a 99% cure rate for Cushing's. Dr. Duh, believes the rate to be closer to 90%. Of those "uncured" approximately 5% will need further treatment, the other 5% are still producing some cortisol, but not an amount that is worrisome. He spoke about adrenal remnants that can be left behind at surgery; tiny pieces of the adrenals can be missed even with meticulous surgical skills. As an added bonus other endocrine organs can also "learn" to make cortisol. He said he has one patient that he feels was a surgical failure, but she is thrilled because her body has decided to produce only the appropriate amount of cortisol and she no longer needs to take replacement hydrocortisone. If that's not a success I don't know what is!

I like hearing 99%, but I think the new number is more accurate based on patients experiences I know of. I'd like to think BLA will be the end of a long hard road, but realistically, well...I won't be letting my guard down.

Friday, April 17, 2009

A Change In Attitude

I'm feeling so much more positive since my last entry. Today we met Dr. Duh at UCSF, he is their top dog for endocrine surgery, and was one of the first in the country doing BLA's laparascopically. He's done over 500 and really sounds like he knows his stuff.

I went in prepared to fight and was pleasantly surprised. The "fellow" came in first and had a really nice talk with us, he was really well informed and did a great presentation. I got totally antsy when he made comments to the effect that we would probably need to do "a little more" testing, get an adrenal CT and eek, meet with their endocrinologist. I held most of my thoughts 'till Dr. Duh came in as well. He is really great, very personable and very knowledgeable as well~ a really great bedside manner! He offered to have us speak to his endocrinologist, but it wasn't mandatory. Needless to say we told him we weren't interested. We will work with one of the UCSF pediatric endocrinologist while in the hospital, but that's all. He looked at the CT done at NIH and said another isn't needed and the only tests he wants done are a single cortisol, an ACTH level and one 24hr. UFC. He said they are just to have a baseline. He gets the "cyclic thing" and completely understands that the numbers are likely to be completely normal and he has no problem if they are. He event talked about diurnal variation, and how 8:00 AM's weren't necessarily significant in cyclics!

His scheduler is supposed to call us the end of next week. They did say it is going to be a while before he has an opening for surgery; June at best, August at worst. Alex says she would prefer to wait for him than to use someone else; I'm feeling the same way. It feels comfortable; she will be back in the same pediatric ICU where she was for the last surgery and they were really great. Once again... we wait!

Tuesday, April 14, 2009

Anger and Bitterness

Negativity is seeping from my pores. Most of the time I handle it, but some gets the best of me. Right now I hate most "medical professionals", those who don't care, those with the big egos, those without enough time. This round of bitterness stems from an e-mail last night from the surgeon at Stanford. He hasn't heard back from Dr. Friedman and feels that we should, after all, see the endocrinologist he works with. Why don't we just come back down to Stanford and see what he has to say? Ummm...maybe because I don't care what he has to say? Maybe because Alex doesn't need to suffer through another 7 hour day of driving? Maybe because he will say he has a different opinion and doesn't think that a BLA is the best decision? I am well aware that Alex's case is "complex". Why do these guys get to spend a half hour with a patient and determine what is "best". Okay, so they went to medical school while I was at beauty college, but I am the one who has exhaustively researched what is right for my child. I guess this means we got to S.F. for the Friday appointment with Dr. Duh. I suppose he will say the same thing?

Saturday, April 11, 2009

Medical Alert Jewelry

We still haven't ordered a medical alert bracelet. I am being totally indecisive on this one. A year ago, before pituitary surgery we had this same dilemma. Alex wants something that looks pretty: I want something that screams "read me in an emergency". Last time we ended up getting a silver bracelet from Tiffany's. One of the popular ones with the "return to Tiffany's" heart shaped charm. Theoretically we were going to put the medic alert charm on the same bracelet. Of course Alex loved her Tiffany's bracelet so much she didn't want to ruin the look by adding the ugly charm. In the end she never really wore the medical charm. We knew pretty quickly that she wasn't cured and that it wasn't that important.

So here we are again, bracelet? necklace? good quality to last forever? cheap to be replaced frequently? I'd like to know if having the "name" brand makes a difference in an emergency; do paramedics or docs actually call the number to get the information from the service? There is a yearly membership fee. To use their service you have to buy the bracelet from them, and they seem to have the ugliest collection.

Alex pointed out that since I probably won't leave her side for months post op it's not like we are in a big hurry to order. It's just not like me to procrastinate!

Wednesday, April 8, 2009

A Step In the Right Direction

This is from my email box this morning.
Mrs. Bibby,
I've exchanged messages with Dr. Friedman. Expect to talk to him soon and will get back to you right away. I have reviewed your daughter's records in more detail, and your decision to proceed with the bilat adrenalectomy does seem very appropriate.

This seems like we are making progress anyway. I wish I knew his definition of "soon".

Sunday, April 5, 2009

Blog Visitors

I'm really curious; am I writing to an audience? I have no idea if anyone is following this blog or if it's strictly me journaling for my own benefit. After a month plus I've decided I definitely enjoy doing it. I don't know that I would say it's therapeutic exactly, but putting something in writing seems to mean I have less stuff cluttering up my brain.

If you are reading this will you please either click on the tab and post a brief comment to let me know you've stopped by, or if you have my e-mail address send me a quick note? Thanks!

Saturday, April 4, 2009

I Should Have Seen It Coming

Well, I got the rug pulled from under my feet again. It felt more like getting hit up side the head with a shovel. How is it that I remain optimistic going in to these appointments? Will I never learn?

Yesterday morning Alex was feeling particularly awful. She was in a low to rival all lows. Before we could even leave the house she took 3 doses of hydro to get past the extreme nausea. A three hour drive got us to Stanford just in time for her 2:00 appointment. The receptionist told us Dr. V was running 45 minutes to an hour behind. The finally called us into the exam room at 3:40. Another hour later we were still waiting. I stuck my head into the hall and complained. They sent in a doc in training. He was completely lost and baffled; he had none of the information needed. Out he goes. A little after 5:00 (yes this was a 2:00 appointment) the doc in training along with the surgeon arrived. By then Alex and I are completely frazzled and exhausted.

Dr. V gave us a heartfelt apology for the wait and gave us his full attention. The good news? I really do like the guy and feel he is qualified to do the surgery. The bad news? He feels "considering the complexity of the case" he needs to talk things over with Dr. Friedman and some of his Stanford associates before he is willing to schedule surgery. I can't blame the guy I guess, he doesn't know Dr. F, so his caution is warranted. I know I should respect that he is not someone to jump in to life altering surgery uninformed. I just wanted so badly for this to go more smoothly.

I swear the long wait threw me off my game. I should have explained my decision making process; I thought of that in the car on the way home. This morning I sent Dr. F an e-mail to tell him to expect to hear from Dr.V, but who knows how long it might take for the two of them to connect by phone. I sent Dr. V an e-mail as well. I gave him a complete explanation of all the things I failed to mention yesterday. I just don't know what to think now. I don't know when we will hear back or if he will be willing to do the surgery once he talks to everyone.

Wednesday, April 1, 2009

Another Sinus Infection

Prior to pituitary surgery Alex never had a sinus infection; things change once they mess around inside there. This past year she has had several, the latest one this week. Over the weekend she was complaining of a headache, eye pain, sinus pain and had a low grade fever off and on. Sunday night she had her first ever gushing nose bleed. Weird, because earlier in the evening she said it felt like something popped in there. The problems are always on the left side; it's the one they went in through for surgery.We saw the pediatrician on Monday and got Alex started on Augmentin yesterday. Hopefully 10 days of antibiotics will get rid of it this time.

It's going to be a week of appointments. Next up is the G.I. doc on Thursday, followed by the surgeon at Stanford on Friday. Next Monday she has a dental appointment. It should be fun just getting her up and out of the house that many days in a one week time frame. As of yesterday she seems to be cycling up, so that should help, if it lasts.