Update on Al #10

7:15 am: Well, this morning is bittersweet. Fortunately, the oncologist, Dr. Liu, came BACK to the hospital last night in order to consult with us. Like every doctor we've met, he gave us all the information he has available, all the nasty possibilities along with all the good possibilities.

As you know, they were not able to resect Al's trachea; the growth of the tumor is too involved in the trachea to be successful with a resection. I'm thankful Dr. Mathiesen knows the limitations of this procedure, and elected not to try, as he told me they could work on him all day and be unsuccessful, which meant certain death. Reducing the tumor by surgery -- in their experience -- has not improved outcomes like it can with ovarian or cervical cancer, and it puts the patient's body through more trauma; in simple words (theirs), "it's not worth the risk".

Our next step is to check out of MGH (this morning) and go home (tomorrow morning). We'll be bringing all his results home with us to share with a radiologist and oncologist. Dr. Liu kept reassuring us this CAN be cured, but we're going to need a radiologist that will separate tracheal cancer from the treatment of lung cancer or even esophogeal cancer. The treatment (a combination of radiology and chemotherapy, preferably at the same time to achieve positive results) will have to be very specifically focused on this tumor and VERY aggressive if it is to be successful. I'll be on the phone later this morning with Dr. Berquist, and we'll probably be at least CONSULTING at KU Med Center in Kansas City, if not receiving all this treatment there.

Amber, do all the research you can to find us THE GUY back home who has the confidence to admit he's never treated tracheal cancer, but the willingness to accept recommendations from MGH. Better yet, let's have a woman; we're more willing to admit we may not know everything!!!

Al could be treated here at MGH, but we're talking 6-8 weeks of treatments 5 days/week. In addition to the significant financial burden, Dr. Liu stressed that we need to be at home, where our support system exists. After the day we had yesterday, I'm going to say I believe he's correct. I know you're all only a phone call, e-mail or IM away, but we might as well be on the moon. LOL

Luckily, I had been chatting the morning away (imagine that!) in the waiting room with a couple of wonderful ladies from upper New York State (whose husband was getting a liver transplant; keep the faith, Cleo!), so I was able to be soothed -- and hugged -- by some very caring strangers.

Evidently I freaked out my family with yesterday's e-mail, and my youngest nephew Josh made quick arrangements to fly my sister Vicki (the RN) here to Boston, just to be here for me. I love that in a family!!!

I took the next-to-last shuttle back to the hotel instead of spending more time in the hospital. Al was feeling MUCH better by the time he got up to his room, and once he got a Dr. Pepper or two into his system, he was back to his normal ornery self!!! So I left him in the company of his roommate Phil -- feature a smaller, east-coast version of Daddy who sorta looked like an older George Carlin -- who evidently kept him up most of the night, coughing.

Hope and pray now that we can actually get treated at the new Cancer Center in Salina. Maybe one of their new recruits is familiar with trachea cancer.

12:46 pm: Well things look a little brighter. I missed Dr. Mathisen by a few minutes on arrival at MGH this morning (oh, they tell me that also stands for Man's Greatest Hospital!). Al actually admitted to me the oncologist scared him last night, but Dr. M reassured him that they've had good experience with chemotherapy on this type of tumor.

I've already heard back from Dr. Berquist's office, and he's already been working the radiation/chemo angle from home. The consensus is for us to see Dr. Perez-Tamayo right there at home on Monday; she's a radiology oncologist, and well-reknowned in our region. I believe she treated my other sister, Pam, last year. And he has an appointment with the local oncologist, Larry Beck (a good sign???), on Thursday. So nobody's dragging their feet, and Dr. Liu gave us a good list of questions to ask and challenges to present to them.

Vicki, if you want to drive over for one or both of those appointments, that's fine. We'll talk over the weekend.

Beaner, I'm pretty sure it's 'thatothersharon', my nickname on every other site on the web I visit.

Pam, thanks for the long talk last night. It was very therapeutic and cleansing for me -- just what I needed (other than the chocolate milk and pop-tarts!).

Karen, I'll give you a call Sunday. I'd like to hear what Drs. Berquist and Perez-Tomayo have to say on Monday before I come back to the office. Tell Matt I'll bring him cookies for holding down the fort in my absence!!! (Baking cookies is very therapeutic for me.)

Mary, Al's wondering what's going to be in the freezer when he gets home -- he's had a voracious appetite the last 24 hours!!!

Girls, catch you on IM later!!!

So that's it from Boston. We'll be heading back to the hotel in an hour or so then hitting the 99 for a GOOD meal before settling in for the evening.

xoxoxo
Sharon