Status Quo

Geez, I didn't realize it had been so long since I'd posted an update. Al had very successful surgery in Kansas City last April, 'textbook' to quote his surgeon. The downside was that his voice was reduced to little more than a whisper as a result of the surgery. The left side of his vocal cords has been slow in 'overcompensating' for the right side, but the good news is that his airway was indeed improved.

He has undertaken speech therapy, and has vocal exercises to improve his ability to speak. Dr. Garnett explained to us that we should think of his vocal cords as another muscle, and with more exercise, that muscle would get stronger. This has proven to be true, as his voice gets stronger the more he talks. But if you call him on his day off, you're likely to get little more than a whisper.

Understandably, this has been very frustrating over the past number of months. We have had regular follow-up visits with Dr. Garnett in KC, and he's pleased with Al's progress. We have another visit scheduled in July, and I'll try to remember to post again after that.

Otherwise, neither of us has any indication of cancer. I'm still undergoing semi-annual mammograms, and they remain clear, so we're thanking our lucky stars for these blessings, and trying to support friends and family when they are faced with the challenge of this wicked disease.

xoxoxo

More surgery to come.

Dr. Cossette wanted to give Al's vocal cords some time before proceeding with anything further. When we saw him in January, he scoped Al again and was disappointed to see how little airway is available. After his laser surgery last summer when they removed scar tissue from his vocal cords, Al had a better airway. Unfortunately, the airway is still restricted (about 5-6 mm compared to a regular person's 12-15mm) and the scar tissue will grow back. When he gets a cold or any kind of infection, that airway is even less.

So we've been referred to Dr. Garnett, an otolaryngologist at KU Medical Center in Kansas City, who scared the life out of us. (The other patients in his waiting room gave us a bit of a start, as well.) He looked at the photos from last summer's surgery and the scope done at Dr. Cossette's office recently, and gave us all the skinny on a trachestomy. Short of that hand-held machine that you use to speak when your vocal cords don't work, a trach has been Al's biggest fear, though we now understand it's not if he has one, but when. Dr. Garnett explained that this part of your body responds to radiation by creating scar tissue for the rest of your life. Also, the radiation killed off the saliva glands in that area, so that is why Al's always fighting mucous build-up -- the saliva would be thinning out that mucous so it's more easily expelled -- resulting in that hideous cough he's lived with the past five years.

He went on to tell us all about a trach (see Hood Stoma Stent if you really want to know) and how much better the stents are now and how much better off Al would be with a trach. (Prior doctors have advised us to put off a trach until there are no other options due to potential complications and just the ick of dealing with it!) So we were figuring that would be his solution until Dr. Garnett scoped him in the office.

Evidently seeing for himself changed his mind, and he recommended a cordotomy. The long and short of this procedure is to remove a section of the right side of Al's vocal cord (which is immobile and unresponsive, due to the radiation) to increase his airway. The left side of the vocal cord will overcompensate to allow him to talk and it should allow him to move more air. They leave a stitch in his neck holding the vocal cord open, which allows the incision to scar over when it heals and hold the vocal cord (and airway) open. He explained that Al's voice would be raspy for a few days, but should be vastly improved in pretty short order.

So they've scheduled the surgery for April 29 (which is FAR too long in Al's estimation, but we didn't get any choice!) at KU Med in KC. He'll be in the hospital overnight, and he's decided to take a full week off to heal. Then we'll go back on May 18 for a check-up, and at some point another surgery to remove the stitch.

We're both happy to have something hopeful on the horizon, but it can't come soon enough; this man needs to breathe, after all! Thank heaven for optimism!

Mostly Good News Today

Surgery went well. Al's throat was sore, but that's to be expected. He didn't require the trach (thank goodness!), but we all agreed overnight at the hospital was the best thing. I'd forgotten how you really can't sleep in the hospital (as I stayed with him)!!!

He got several things done around the house while he was on medical leave for a week. Best of all, we both feel he's breathing AND talking better, and hope it's not just wishful thinking!!!
He's allowed to do pretty much whatever he feels like doing. They told him to sleep in a reclining position for several nights, but now he's back in bed most of the time.

He's just come down with a 'different' sore throat in the past few days, so I dragged him into the doc this morning, who confirmed some ICK going on and felt like we'd be better off to nip it in the bud considering the recent surgery. So he ordered a Z-pack of antibiotics and Al stayed home from work to rest. He's scheduled off tomorrow, so I'm thinking by Monday he'll be feeling a LOT better.

Thanks for thinking of us!!!

WAY overdue for an update!

Good news, bad news kinda thing. Good news is that Al was dismissed from further visits by his oncologist when we saw him on early May. WOO-HOO!!! No signs of cancer!!! Hard to believe it's been four years, isn't it?

On the bad news side, he had a nasty cold/respiratory infection this winter which has brought to light some scar tissue on his vocal cords (after about half a dozen various appointments). He's been hoarse off and on to varying degrees since December.

So please keep us in your hearts come Thursday, as he'll be going in for laser surgery to remove the scar tissue. We believe (and hope) there are a couple of bands of scar tissue which are restricting the right side, and once that's alleviated, the cord should be able to move freely. This would allow his voice to return and his vocal cords to open fully again so he can, oh, I dunno, BREATHE.

He'll be admitted as an outpatient but the plan is to keep him for 23 hours. We're expected at the hospital at 6 am for a 7:30 surgery. If all goes 'textbook', he'll be home Friday morning and can return to work Saturday. If the area swells, they'll put in a temporary tracheotomy, he'll stay in the hospital an extra night, and he'll need to be off work a week or two. He's very cool and calm about this; I'm a little freaked out about the possibility of a trach, but we both have great confidence in his ENT (Dr. Cossette).

I'll post an update as soon as I have some details, probably later on Friday.

As for me, I'm doing just fine. My boob still feels sore -- like a bruise -- off an on, and it varies in size from week to week, but no further treatment is needed at this point. I blew off the cutlet idea, but have been reconsidering lately, so one of these days I'll get down to B&K for a consultation. I'll have a bilateral mammogram and final follow-up with my surgeon in early September, continue to take Femara daily, and see my family doctor quarterly until further notice. Otherwise, we're pretty much back to life as we know it!!!

It's been a crazy 6 weeks!

Happily, I'm recuperating well. We visited Dr. Osland for my 6-month surgical follow-up (can you believe it's been 6 months???) on Thursday, and got the all-clear. I've been making myself crazy thinking about cosmetic (reduction) surgery, so it was great to talk with the pros. Given the risks and the (relatively) minor issues I'm having, she seemed to advise against it; her PA was encouraging surgery "if it would make that big a difference" in my mind. Dr. Osland explained me the 'mechanics' of the process and told me no reasonable surgeon would consider touching it for another 6 months, so I've put it behind me for now.

I plan to go to B&K and pick up a 'cutlet' -- and start stuffing my bra for the first time in my life!!! Nobody notices the difference but me, but when I'm wearing those few shirts that emphasize the difference I can slip in the prosthesis and feel better about myself. And I'm thinking I'll take surgery off the table.

Al, on the other hand, has had quite a rough ride. He got a respiratory infection in late December which involved two rounds of antibiotics and a round of steroids. He's pretty much lost his voice, and a bronchoscopy the end of January revealed a yeast infection on his vocal cords. Dr. Berquist put him on an anti-fungal, which has cleared up the yeast infection but has not restored his voice. So he saw an ENT, Dr. Hendrick (Al saw him in 2006), who reiterated there is no paralysis evident in his vocal cords. He didn't understand why Al's voice hasn't come back either, so Al's going to have a study (scheduled for March 23) of his vocal cords. As I understand it, they'll go in with a high-speed camera and record the activity of his vocal cords. I'm hoping this will prove to all of us that the paralysis of his vocal cords disappeared after his treatment, and we'll get back to life as we know it.

Fortunately, he is feeling better and has more energy. His voice comes and goes, but his breathing has gotten easier and he doesn't need nebulizer treatments every 5-6 hours just to function. He now wants to get a feel for how much his system is actually compromised, and what he can do to improve his lung capacity and literally breathe easier.

So, hang in there with us. I'll try to be better about blogging regularly, but always know that no news is good news.

Finished is GOOD!!!

My final day of treatment was pretty great. The patients and staff were thrilled with the treats, and I nearly had the stuffin's hugged outta me!!! I spent a little more time there than usual after treatment so I could say good-bye to everybody, and got to say the things I wanted to say to each of them. Each of whom told me that I had indeed made a difference in their lives.

You go along, and you hope you impact people's lives in some manner -- preferably positive! -- but to hear it expressed is really a wonderful thing. We talked individually, and we talked as a group, and all confirmed how I felt -- your 'radiation buddies' become your daily support group. Wish I'd tapped into that a little bit earlier on.

I got my 'walking papers' from the nurses, and I'm most excited that I can go back to my regular bras in two weeks, assuming my skin continues to heal. It looks really great to me now, and even that last section of yuck has cleared up. So now I'm just moisturizing heavily to keep the healing going -- and yes, I'm back to my Hawaiian Tropic lotion. I have to get semi-annual mammograms for two years, then return to my regular annual exams.

I see Ferg next week for a previously scheduled follow-up, will have a mammogram in late February, and then it's back to my surgeon the morning of the Garden Show (March 5). I'm working through all the angles of the cosmetic surgery, so I'll have some good questions for her when I see her. She would not perform that surgery, but I'm confident she'll have my answers. Al's teasing me a bit, telling me I'm the only one who sees any difference, but I think this is just part of my process. It looks pretty decent when I look in the mirror, but when I look down at my chest, I can really see the difference. At this point, I don't expect to do any more surgery unless I have to -- that shit HURTS!!! -- but I want to have all available information. I guess there's no rush, really.

On Friday, my boss and co-workers surprised me with a beautiful pink Dahlia card and this lovely cake. You can't see it very well in this picture (from my phone), but the fondant ribbon has 'Survivor' written on it.

They wanted to celebrate the end of treatment and congratulate me for managing it. And they even said I haven't been that bad to deal with. Right!!! I'm still employed, and I'm still married, so I figure I'm a lucky girl.

3 . . 2 . . . 1!!!

That's right, ladies & gentlemen, I have ONE treatment remaining. I saw Dr. Perez-Tamayo on Monday, and she agreed my skin was properly healed so we were able to resume treatments. I've had radiation every day since, and tomorrow is my final treatment. I'm wondering whether I'll be able to sleep; the excitement has overwhelmed me in the past hour or so!!!

I've spent the evening baking carrot cake cupcakes and oatmeal raisin cookies (1) because Al's birthday is Friday and those are his favorites, and (2) to take to my fellow radiation patients so they won't kick my ass when I dance through the halls tomorrow. I couldn't take anything with chocolate or nuts, as the prostate guys aren't supposed to eat those things. Two of the guys and one lady have been with me throughout my treatment, and we've become a support group of sorts for each other. Seems when one of us is bummed or feeling poorly, the others can rally to encourage them, and the more I've thought about it this week, they've been a big part of my healing, but more importantly the spiritual growth I've found in this experience.

I've been blessed that Marlene and Tom bumped into my life during treatment. He has been, by far, the most attentive caretaker I've seen in this waiting room. She was SO miserable (and scared, I think, of the treatment), but she always said hello and asked me how I was today. She started chemo first, then added radiation. When that got to be too much, she gave up the chemo. After a bit, she gave up the radiation. I understand her cancer was very widespread and late stage when she was diagnosed. We lost her just before Christmas. Tom, I learned, was not her husband as I had assumed. He was a family friend. A friend so caring he MOVED IN to look after Marlene and her husband during her treatment. He'd lost his own mother and then his wife to this dreaded disease and knew just what Marlene needed in her treatment.

Althea may be 97 years old and depend on her children and friends to bring her to treatment, but she's as energetic, positive, and hopeful a patient as I've seen.

I've reached out to three new patients just this week; two gentlemen with prostate cancer and a third with lung cancer. His wife is in ICU on the verge of death, and he's been getting chemo in Tulsa at the Cancer Center since July but he has his radiation here. He's angry, and tired of these battles with their health, and wondering 'why me?' as most people do, but I believe the anger sustains him. The older gentleman with prostate cancer is very friendly, joins in the conversation, but rarely initiates it.

Just today a couple closer to my age were in for the first activities of this thing called radiation for his prostate cancer. You could see his wife was scared senseless, but he is matter-of-fact and wondering what to expect. I saw fear in her eyes that reminded me of how I felt when I walked in with Al that day in 2005, so I took the extra 3-4 minutes away from work to talk with them and answer some questions. I hope they'll be there tomorrow so I can take a little more time with them.

It helped me realize how the people who work at the Cancer Center can show up day in, day out, year after year to face off this nasty thing called cancer. I believe it's knowing that you helped someone get better -- whether physically or spiritually -- that keeps them coming back.

I hope I helped somebody in this process. I think I did. I know they helped me.