Update on Al #8

Thanks so much for all your e-mails!!! It really helps to remember there are lots of people across the country keeping us closeto their hearts.

Al particularly had a long day today -- nearly 12 hours at the hospital running between 6 appointments in six separate buildings --intake and lab, history with Dr. Mathiesen's PA (he could be a Mounday, but more about him later!), followed by a tracheal x-ray, chest x-ray, CT scan (that took TWO hours!), lunch at 4:45, followed by an appointment/first meeting with Dr. Mathisen.

I've been telling myself I should call people to soothe my nerves -- the doctor scared the bejeezers out of me tonight! (you know, ALL the details and possibilities as well as the PROBABILITIES) -- but I'm more concerned with spending some time alone with my husband instead of considering everybody else. Selfish, I know. But I can call while he's in surgery tomorrow.

Surgery should start about 10 am Eastern, and I should get an update 90 minutes to two hours into it. What that update will tell me is whether they can proceed with a resection of Al's trachea -- basically slicing out the part with cancer attached, then reconnecting the ends, or in Al-speak, "like splicing the garden hose!" -- which we're hoping for, or removing the majority of the cancer and leaving the trachea intact (oh yeah, it's officially called 'anastomosis', though Donald didn't know the proper spelling).

They'll start with a rigid scope that will allow them to take measurements and gauge the blood flow in the area of his cancer. The freaky thing (to me -- you medical professionals will enjoy this detail!) is that they will make a 'guardian suture' from his chin to his chest. This will keep him from being able to tilt his head extremely back or to either side, to keep tension off his incision after surgery, though he'll be able to have his head upright. They plan to make an incision at about the crease of the base of the neck, but if they have to, will be opening up his breast bone again to gain access. People should sit down to talk to him so he's not looking up, and they're going to have him whisper for several days.

I had understood from Dr. Berquist that this was rather high in the trachea, but evidently it's more centered there. With all the tests, x-rays and scans they've done, they still can't really tell what's going on til they get in and take a look. The tricky stuff here is: (1) Al's bypass surgery 5 years ago, as there could be scar tissue obstructing the working area and/or compromised blood flow. (2) the location of the tumor, as the most important thing is to assure blood flow, and the way the 'vessels' (Donald's word, so I don't have to remember whether they're arteries or veins!!!) run into the trachea, the center section is evidently required for blood flow. (3) the tumor seems rather larger than first expected, and the majority of it appears to be OUTSIDE the trachea (toward the right). Hopefully it's mostly just pressuring the windpipe, and not growing into it or the muscular walls of the esophagus, as it looked to me from what he demonstrated on the x-ray that about 50-60% of the trachea is narrowed. He said they could remove 1/3 to maybe 40% of the trachea and successfully resect it, so hopefully only the smallest bit has actually infiltrated the trachea, and it's not involving the esophagus at all. (4) there are some nerves (he told us the name, but abbreviated it with only an R, but I don't remember) which control the vocal cords, so they need to avoid those or he may lose ability to speak. If that news freaks you out, then you understand how we felt hearing it. I had a few moments of going all jello, but, bless him, Al's attitude is "there's nothing I can do about the situation. The cancer's in there, and we came here to get rid of it." As always, when I'm challenged, he's strong, and vice versa (we have a longstanding agreement that both of us can't be crazy at the same time).

We haven't had any real serious conversations about this cancer, more of a team inspiration speech to each other to be optimistic, and keep doing everything we can to beat 'Walter' (our name for his cancer) out of our lives. But we had those serious conversations 5 years ago with his bypass, so it's just understood. I think he has a great attitude in that we're exactly where we should be for this treatment; he's comfortable with the people treating him, and he knows we're all right here for him.

He'll be in ICU for at least 24 hours (maybe more if they don't have a bed for him on Dr. M's floor), get sips of liquid for a couple of days before transitioning to liquids and solid food at 3-4 days postsurgical. They'll have him on a humidified mask for a couple of days to help keep the incision moist and promote healing. About a week after surgery, he'll have an evaluation with another scope and/or x-rays to ensure it's healing, at which time they'll cut that guardian stitch. When he leaves the hospital (8-10 days) they want us to stay in town 1-2 days to ensure he's OK and comfortable with leaving. His only restrictions will be no heavy lifting or strenuous exercise for about a month after surgery, but then he should be good to go.

If they can't resect, he'll still take out as much tumor as possible, and follow up with chemo and radiation at home. If they DO resect, he'll need some radiation at home anyway to ensure the margins of thec ancer are treated. ='( Al's had to shave off his beard for surgery -- better than letting THEM do it!!! I suggested he call his mom tonight to reassure her, but he didn't think he could do it. Other than that, we've both had pretty strong, positive days, punctuated with a big WHOA! w/Dr.Mathisen. I told Al I was going to have to get a photo of him with a 'naked face' -- I can sure see Doug in his face without the beard!!! And he has reverse 5 o'clock shadow -- his face is tan except where his beard was!!!

I haven't found the internet access at the hospital yet, though I know it exists somewhere, so I'll probably look a little harder once he goes to recovery to send out a full update. Otherwise, the last shuttle to the hotel is at 8:30 pm, and I've already been informed they'll MAKE me go, so I should be back here by 8:45. I've laid in Diet Rite, milk and pop-tarts, so I have all my comfort foods -- and MSN IM will be right there waiting for me, as will the phone.

Just so you know, Al's sense of humor is WELL in tact!!! He harassed all the techs and Dr. M's secretary (she got an order date wrong) through the day. And Amber, he asked me to see if the PA, Donald, was single. He's Yale-educated, good height, great hair, and already looks like he belongs in your family!!! Uncle Al's trying to hook you up!!! =) Hope your shoulder is feeling better, you adrenaline junkie, you!!!

Shelley, is my household in tact??? I'm worried about my furbabies!!! (Though Carol has assured me all is well.)

Everybody, add our dear friend and next door neighbor Ed to your thoughts and prayers. He had a CT scan on Monday, which will be followed with a PET scan next week. Carol & Ed, you know we'll be thinking of you, so keep ME posted on wazzup -- and thanks for keeping an eye out next door!!!

Steph, I haven't really SEEN much of Boston yet -- just the shuttle ride from the airport, then in to the hospital. But we got a kewl view of the 'Chawls' River today, and I was advised to visit the Aquarium and take a 'duck tour', whatever that is. The most interesting point to me so far has been the international mix here!!! I heard at LEAST 8 different languages just wandering the halls today. Thankfully, they have a 'garden dining room' on the lowest floor that is surrounded by rhododendrons in full bloom, lots of grass and a wide variety of trees, which looks up to a large grassy courtyard in the center of the buildings. The air here seems very clean, which we attribute to the sea air. Though it's quite humid, you don't feel it because of the coolness off the water.

Al has assigned me the task of touring Boston for him, and capturing it in photos. As my SB friends know, this must also involve collecting memorabilia, so I have the drawing Dr. M made (which now makes NO sense at all!!!), the tags from our luggage, a few tourist fliers and the menu from the restaurant across the parking lot. I considered scooping up some of Al's beard he left in the sink, but decided that was going a little too far (as I don't have a ziploc to store it in!!!). =)

Kansans, you'll be happy to know one of my Sunroom Sisters is only about 45 minutes away, and we're planning to get together when Al's improving to seek out something interesting -- like maybe an Archiver's, Kim???

Our hotel is very pleasant, the shuttle drivers have been WONDERFUL, and everybody except one receptionist today was incredibly friendly and helpful. We watched this chick, and decided it wasn't just us she was rude to, that's just her manner. Then she came out from behind the desk, and we agreed that either her slacks were too tight, cutting off circulation to her polite cords, or her feet were in constant painfrom her pointy-toe (ala Minola Blanik) shoes, and that's what made her so disagreeable!!! Then again, maybe it just runs that way at Mass Eye & Ear, from the folks we talked to.

I'm sorry I've taken up so much of your time with this novella (if you're even still reading!!!), but wanted to bring you all up to speed, as I know it. I'm not sure how much time I'll make for an update tomorrow, as I expect to collapse once I reach the hotel. But I'll keep you posted as things change, I assure you. Al's strewn across the bed SIDEWAYS, snoring, so I may take up residence in the wing chair, just so I don't disturb him. Neither of us has slept well the past couple of nights (anxiety can do that to you!), so I want him to be rested. I can nap in the Gray Surgical Family Waiting Room while I wait tomorrow -- one of those handy details about being a Potter, I guess; I can sleep ANYWHERE!!!

Thanks as always for your love and support. It's so good to know you're all out there lifting us up in your own way, and only a phone call away whenever needed.

xoxoxo
Sharon