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

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.

More bad news AND a bit of Inspiration

Saw Dr. Perez-Tamayo again yesterday morning, and -- as expected -- my radiation has been put off yet another week. Instead of keeping everything moist, we're now working on keeping it dry, and she gave me a prescription that should resolve the rest of the problem.

The good news is that it already looks (and feels) a lot better, so I'm hopeful we can conclude this business in time for Al's birthday next Friday.

Speaking of Al -- poor guy -- his cold has come back again with a vengeance. Bos has him taking a stronger antibiotic and continuing what he'd been doing earlier in December. If this doesn't clear things up, he wants to refer him back to Berquist (the pulmonary specialist) to scope his lungs again. Which I'll admit, sent chills through me remembering a similar scope nearly four years ago. (Can you believe it's been that long?)

I found this wonderful video on Cathy Zielske's blog, and recommend it to everybody. Get out the tissues, friends. It really hits the spot, and I'm off to learn more about the author, and hoping her book is available at our local library.

There IS hope!

First, the bad news. I don't expect I'll be getting any radiation again this week, as even more of my skin has peeled. Imagine a rug burn on your ta-ta; that's how this feels!!! Fortunately, when it's well greased up with Neosporin and that prescription pain-killer ointment, it doesn't hurt. It just retains a crazy amount of moisture.

Now, for the good news -- because we all get enough bad news. I decided I could no longer go around braless, because I think that's contributing to more skin peeling. So I went digging through my bra drawer and found two old cotton sports bras that I was positive I'd purged last summer!!! Even better, no exposed elastic, so the doctor shouldn't have anything to complain about. Geez, the trouble these coulda saved me the past couple of months!!! Why I haven't run across them before now, I can't tell you.

Now if I can just find some Xeroform dressing to sleep in, life should get better quickly. (If not, I'll get more from the doc tomorrow!) I'm off to make cards . . .

Radiation sucks!

Hope you all had a wonderful Holiday. We really enjoyed our time with our extended families. Unfortunately I wasn't the greatest company Christmas Eve because I was completely fatigued. But I made myself comfy in my favorite chair at my SIL's, and they all treated me like always -- with love and compassion -- which made me feel like more than a bump under a blanket. I headed to bed early, but it didn't seem to slow the festivities. It was wonderful to spend time with all four of the Moundays again; our timing has been a little off lately to allow that.

On Christmas morning, I woke up dizzy. I've had moments of vertigo here and there, but this was pretty steady and very unsettling. Once we got to Shelley's and had lunch, I settled into a comfy corner of their couch with my camera, and the vertigo passed. I was really worried that was going to be my existence for awhile, and that was quite frightening to me. THE KID and our little Missy had such a good day; at 21 months, McKaylen idolizes Cody, and watched -- pointing and giggling -- every move he made.

I've had a bit of a setback. A section of the skin in the 'boost' shot area is breaking down a bit. Imagine a sunburn which has started to peel. Being in the place it is, this section of skin is routinely rubbing against clothing, so it's a constant irritation, and it's rather raw and tender. The tech had Dr. Perez-Tamayo check it out before my treatment, and she checked it out again afterward. I'm assigned another ointment to use with the original anti-itch prescription ointment. For overnight, I get to use this most disgusting gauze that's impregnated with some kind of petrolatum that makes it gooey; but it sticks without tape, and that's a good thing.

The bummer is that I won't be having more radiation this week in an effort to allow this skin to heal. I am to see the doctor before radiation on Monday, and hopefully will receive my final four treatments and be finished next week, pretty close to on schedule. This came as a huge rush of disappointment that rather surprised me. But I took a few minutes to cry like a baby, then got back into the routine of the day.

One thing I have changed is giving up my bra. This makes me very self-conscious -- as it would for any C/D cup girl -- but fortunately (1) it's cold this time of year in Kansas, so (2) I can layer my clothes and (3) I don't think anybody but my doctor noticed. She's tried to get me to do without a bra all along, but I just couldn't bear being without one until I can't bear wearing it. I'm confident my mother will get a big hoot out of this, recalling how adamant she was that I wear my bra in Junior High and High School and how strongly I battled to wear halter tops without one!!! (For my younger readers, this was back in the day when we tried NOT to show our underwear to the world!!!)

I've given myself a break tonight, eaten my favorite comfort foods, slept a lot and wallowed in my disappointment. I'm off to bed shortly, and have determined that tomorrow will be a better day. Fiddle-le-de.

32 down, 6 to go

It should be downhill from here, right? On the one hand, I'll only have three treatments per week because of the Christmas and New Year's Holidays at the Cancer Center. On the other hand, I've had 32 treatments, and they're kicking my butt. It's better now, though, because I know what to expect. I came home from a brutal day at the office yesterday and slept for two HOURS on the couch. Got up, talked on the phone a bunch, had something to eat and went back to bed!!!

Tonight was not SO bad; I only slept for an hour or so after a bit of grocery shopping. Geez, the crowds are out in the stores. The shopping's not bad (unless you want green onions from the produce department at Wal-Mart) and the shoppers are pleasant enough in the stores, but the parking is NUTS!!!

So I'm happy I'm almost finished with treatment, but I still have to get through the next couple of weeks. I'm looking forward to the break in treatment, and the Holidays -- through half-open eyes.

g'night my friends!!!

25 down, 13 to go

Now I've had the 10 boost shots. They were a lot easier to receive, as all I had to do was lie down on the table, put my arm in its cradle, and one 30 second zap later, get dressed again. But they were a bit more intense, and, SHOCKER, tiring.

I had x-rays again on Wednesday. I'm told each time my treatment changes, I'll have a day with x-rays but no treatment. Assume the position, x-ray (x 2 or 3), photos, and get dressed.

That's right, y'all, they regularly take photos of my breast. I wonder if my left breast is jealous. It's bigger now, so it shouldn't be!!! I warned Kelli & Tiff that if those photos wound up on the internet, I knew where to find them!!!

The broader treatments resumed yesterday. Funky positioning, then 4 zaps (x ~20 seconds each), and back to the waiting room. I've been joined in this quest by a lovely lady who's a bit greyer than me named June. She has now stopped chemo until she finishes radiation; since nobody but me seems to understand cancer staging, I have no idea how she's progressing. She's a lovely lady wth the greatest salt-and-pepper hair in a snazzy short cut who presents herself each day in a wheelchair, accompanied by a sweet and gentle white-haired man whom I assumed was her husband, or at least (as mom says), 'gentleman friend'. I learned today that he's 'just' a friend, having helped care for his own mother who died from cancer, followed several years later by his own wife. He brings June to the Cancer Center every day, helps her change into her half gown, pushes her here and there as needed, keeps her company, brings her tissues, and I'm confident holds her head and her hand when she was sick from chemo. If that's not love, I don't know what is.

Watching them makes me so thankful that I'm only Stage I, but even more thankful for the man who shares my life. He's been so supportive, encouraging and understanding, though I'm confident he's worried and tired of hearing me whine.

This has been a good week; I've had a lot of energy and managed to behave more like a healthy person again. The fatigue hit like a brick this afternoon, and I've been laying around since I came home from work. But tomorrow will be better, and the end of treatment is finally in sight. I'm sorry I haven't posted more often, but it's pretty much the same thing, day after day.

Getting there

So I'm over a third of the way through radiation, and hanging in there. I need to learn not to try to 'muscle through' it when I hit the wall, and just give in, go home and lie down. Especially right now, as I'm 3 or 4 visits into 10 'boost' shots of radiation. Instead of wider shots from either side of my breast, I'm getting focused, more concentrated shots directly overhead to the site of my surgery. It's quicker, because it's positioned on one new tattoo, then just one 30-second shot (compared to triangulating on my three 'old' tattoos, then four 20-second shots). But it's definitely more tiring.

I've learned my last visit is scheduled for January 6, barring any issues with my body, LOL, and the equipment -- which seems more likely. They've had one machine or the other down a good portion of the past 2 weeks, so I got 'bumped' Wednesday. This wasn't an altogether bad thing, as I was off Wednesday afternoon and was able to get rested up and felt really good for Thanksgiving with my family. I hit the wall about 3 pm and pretty much passed out as soon as we got in the van to go home (about an hour) around 5 pm.

I've been using my usual wonderful lotion (Hawaiian Tropic After Sun with Vitamin E) but it's not QUITE doing the trick in one area. The doc gave me a couple of samples, but I think her cream is what is making me itchy, so I'm giving it up!!! At this point, the majority of my breast is just light pink -- like a 'flush' as opposed to a burn -- and the 'spot' of concentration of these boost shots is kinda deep red/tan. My underarm, on the other hand, is nicely tanned for the first time in my life. LOL Other than general fatigue, I'm doing really well.

Fortunately, once I get a good rest day, I'm good to go again. So I'm off for some of that rest!!!

10 down, 28 to go

Radiation is not so bad. Just a long x-ray (about 2 minutes or so). Really. Until they don't get you positioned properly and you have to lay on that hard table in a cold room in an awkward and uncomfortable position for, oh, say, 45 minutes!!!

My first week of radiation was exhausting, which I am accrediting to two things: (1) a head cold struck about Sunday before I started treatment on Monday, and (2) I didn't know what to expect or how I'd react, and I was really keyed up about it when I started. And I'll give honorable mention to the fact that I started my aromatase inhibitor (Femara) a week or so beforehand. Evidently one of the most common side effects is muscle aches!!! By Wednesday morning, I was aching and exhausted, and had a little meltdown because I wondered how I would manage 38 treatments when I felt this bad after only 2.

So I spent last week sleeping, getting to work, clock out for radiation, radiation, clock back in to work, lunch (and a little rest) at home, back to work, home again, sleep. Repeat. The cold is better after a lot of rest at home last weekend and a few hours at work to make up some time and try to get caught up a bit. And this week has been pretty much the same, except for the Breast Cancer Support Group meeting Tuesday evening, and mostly I've felt better the second week than the first.

Then it was Thursday morning. I had gotten up feeling pretty emotional anyway, but when my positioning was wrong and it took so long to get me situated, the tears just rolled down my cheeks. OK, fine, radiation over, we figured out what went wrong and how to prevent it in the future. But I just couldn't pull myself together. So I went home about lunchtime and stayed there, resting, recharging, revitalizing.

And Friday was a good day. I realized how lucky I am when I asked my new buddy-in-radiation how many visits HE had left. The reply? "I don't know." He started radiation the same day I did, and will find out Monday when he sees Dr. Perez-Tamayo how many visits he'll have total. Monday I'm going to introduce myself properly, as he's been a spot of sunshine in a waiting room that's been less than cozy a lot of times. And I'm going to make more of an effort to chat, as I realize my magazine is as much a shield of self-protection as it is self-entertainment, and the new chick (who's probably close to 90!) could probably use a radiation buddy as well.

I slept in this morning, and am taking my time getting going. These are all the things I'm told I'll NEED, but the truth is it's cold and windy and overcast outdoors, so who cares about getting dressed and out? I'm going to, though, because I want to go to work and give myself a false sense of being caught up. There's one folder of paperwork that needs my attention, and a day of route slips that need posting. And I'm going to spend some quality time cardmaking; it rebuilds me on an altogether different level.

Funny, I just realized how little I've talked about Al throughout this process. But you all know he's always great to me. I gave him a 'bye' on accompanying me to the radiologist; I'm sure it takes him back to his own experience as a patient, and we know the drill. He just vacuumed for me, and has been regularly rebooting the dishes or the laundry or whatever needs doing. I try to cook casseroles, soups, and such on the weekends, so he has choices for meals during the week. He's learning all about the joys of arthritis, so if you have any recommendations, pass them along.

And thanks for your support. On whatever level you've shown, it really feeds my soul. (Yes, I do actually HAVE a soul, LOL.)

OK, about Halloween

Our office commonly costumes up for Halloween. But since October is Breast Cancer Awareness Month, I took it upon myself to issue a challenge in our company newsletter for my co-workers to consider 'going pink' for Halloween this year. And I promised them I would post photos on my blog and bring the winner their choice of oatmeal raisin or chocolate chip cookies.

I can't tell you how encouraging it was to see and hear about

all these people in pink, just for 'the cause'.

If I'm missing photos, send them along and I'll add them here.

Unfortunately, I haven't had the energy to post all the photos, but I want to upload what I have so far. And I think I've got three winners to announce. These people really rose to the challenge. One of the ladies at Comcare Santa Fe e-mailed me to come check out one woman who really went 'above and beyond'. Imagine my surprise when I discovered it was my niece(in-law), Cara Beck. My favorite feature was her feathery tiara, which you can barely see against that wig. I feel she takes the prize for "Most Square Inches of Pink".

Next up are some of the ladies at Comcare Elm. I think Ann and Pam come in close on the square inches award; Cara squeaks by due to one word: LAYERING. I'm going to have to find out what Ann has in her hair here.

Margaret (left) and Cindy got in the spirit of the thing.

I believe Margaret was the best accessorized, including this cute little cutie.

Mary Klaus gents an Honorable Mention. She came as a Punk Rocker, but check out those pink eyelashes and lipstick!!!

But the true winner at Elm is definitely Lesli. Let's hope she'll share the cookies with the other ladies!!! That t-shirt is a special edition from Kansas State University--Salina.

We tried to take a single photo of the entire group at SPT Santa Fe (where I work) because everyone was wearing pink. Except Nikki was off Friday, so she wore pink on Thursday but wouldn't let me take a picture! But we never managed to get everybody together for one shot, so I'm making pix from the mini movies we shot, and need to PhotoShop a couple of people into the group. I hope to add that here over the weekend. Here's a couple to hold you over til then, as I promised Jennifer I'd post this one:

and I can't leave out Dave:

What can I tell ya? We work hard, and we like to play hard. I think they've earned both varieties at my office!!!

Let me tell you about Halloween

CBS just pronounced Obama as the winner, so I'm off to bed. I'll tell you about Halloween tomorrow.

Co-workers, thank you very much, and keep watching this space for updates and photos!!!

2 Down, 36 To Go

Well, radiation ain't all that bad. So far. I clock out at the office, go next door, enter a dressing room, strip from the waist up, don a 'half gown', lock my stuff in a locker, and make myself comfy in the waiting room with a group of other patients (who are much closer to my parents' age than my own and, frankly, nosy).

The tech comes to fetch me, we walk around to the South radiation room, I lay down on the table, chin to the upper left, right arm up above my head with my forearm lying in a support cradle . The techs get me all squared away on the table, tell me not to move (breathing is allowed!), dim the lights, turn up the tunes, and we get going. Yesterday, they were playing SPONGEBOB of all things, so today I brought in a copy of my Emerson, Lake & Palmer 'Brain Salad Surgery' CD. (It was the only thing I could think of right off that wouldn't have me head bopping or toe tapping!)

The machine rolls over to the left, the little levers adjust, and it zaps me. I know it's zapping only by the noise it makes and a red light over on the wall that lights up when radiation is happening. The little levers adjust again, and it zaps me again. Then it rolls to the right, zaps me twice more, and we're done.

It's truly like getting an x-ray. In an awkward position. Today they told me I could take the two strips of clear tape off my sides (they were itchy) that have been covering my tattoos. Well, I thought they were tattoos until I pulled one off!!! We'll see how it goes tomorrow without the tapes, LOL!

I didn't expect to feel any differently for at least a couple of weeks, but I was exhausted when I got home yesterday. Could have a lot to do with the emotional tension I'd built up falling away after my first treatment. Could be all those freaking checks I needed to post yesterday afternoon, and actually working past 5 pm to get the daily work done. But I felt the same way today when I finished, and my arms feel puffy -- like I'm premenstrual or something. I'll keep a close eye on that, as they're zapping the lymph nodes over my breast bone as well as in my underarm, and I don't want to have issues with lymphedema. My upper body feels like a rubber band with no elastic left.

I'm going with the idea right now that my symptoms are psychosomatic. But I'm working on being the perfect patient. I've already learned regular meals and snacks really help my energy level, so no skipping lunches or my newly beloved granola bars. Wonderful, wonderful Al has been off work yesterday and today, and he grilled lunch BOTH days and had it waiting for me, so all I had to do was come home, eat and relax.

But I'm not going to bed until they officially announce the new President. Or maybe I'll go to bed and not go to SLEEP until then. Or maybe I'll just go to bed and have sweet dreams because I believe we'll wake up with President-Elect Obama and wait for it to be confirmed in the morning.

More time at the Cancer Center

After all the scanning and markings last week, I figured I was prepared for today's activities. New room, same pose (chin up and to the left, exposed chest, right arm up in a 'guide' to hold it above my head) on a hard metal table with all new machines -- for about 40 minutes. Both my shoulders were cramping so much by the time we were finished, I figured they'd fall off!!!

The purpose of today's visit was to complete the calibrations for radiation. I have two more new tattoos about 3" below the others along my sides. I've now fully examined every screw, fixture and finish on that freaking machine. My visualizations weren't working AT all, so I was just screwed. Fortunately, I didn't have to pee!!!

Anywho, they assure me that radiation will only last about 15 minutes, so I'll just be reminding myself of what FLYLady says "I can do anything for 15 minutes!" Hope it helps.

I start on Monday. Hopefully by then, the worst of this cold will be behind me. Al was sweet to share, but I really coulda done without this one, LOL!!!

xoxoxo
Sharon

In Search of the Perfect Treatment Bra

I really love the bra style I've been wearing for the past few years. It's mostly cotton, fits well, is readily available fairly cheap at the Marts, and the cup fabric is thick enough for modesty, even in the coldest environment. However, it didn't pass inspection due to the exposed elastic band that runs the full circumference of my body. I'd planned to use my camisoles from surgery, but find the seam at the base of the cup to be rather uncomfortable when I'm vertical all day, so that's not an option.

I promised myself if I didn't need chemo I'd order some new slacks from Lane Bryant, so I checked out their sports bra selection, and added a couple of styles to my order. I'm hoping one or both of them will pass inspection.

Meanwhile, I stopped into Wal-Mart today to see what's available there. I found a fabulous one, but it only goes up to a 40 and I need a 46 or 48. The one style I that I tried on had a front closure, and the hooks and eyes weren't covered well, so they'd really rub against my skin. And the fabric was very lightweight -- no modesty happening there.

But after examining the fit, I caught a glimpse of my reflection in the mirror. Now that the swelling has subsided, my breasts are probably a full cup size different. I've known it's changed and I know it will continue to evolve in shape and texture during radiation, but it was really shocking to see the difference so clearly today in that bra. {NOT really evident in my regular bra!}

So it looks like I'll need to stash my cotton knit shirts -- which are pretty much EVERYTHING I own -- in favor of woven fabrics. Or maybe I'll bring back my vests and jackets as camouflage. Fortunately, the weather is cooling off so it shouldn't be too miserable. And my search will continue.

And on to Radiology

My first appointment with my Radiation Oncologist, Dr. Claudia Perez-Tamayo, was Wednesday. I gave Al a 'bye' on this visit because (a) he wasn't terribly fond of her when HE was her patient, (b) I knew it wasn't going to be a short and sweet appointment, and (c) he doesn't need to take any more time off work than necessary, and it just wasn't necessary. In the big scheme of things, my history with Al's cancer has certainly served me well; I know a bit more than your average patient what to expect along the way. And Pam's coaching hasn't hurt either!

The angel on my shoulder and I were ushered into the conference room 25 minutes after my appointment time (hurry up and wait some more!), where a lovely nurse named Carrie reviewed my 5-page self-completed history form. Then she fetched the doctor for a lovely, lengthy chat. I found her much more enjoyable than when Al saw her 3 years ago. We even discussed Nordie's at Noon and agreed it was odd that none of the four authors mentioned radiation as part of their initial treatment. She also found the book disturbing, though on different levels than I have, but it made me feel better all the same.

I love her analogy of why I need radiation after we've already removed the cancerous tumor. I'm not sure if she uses this for everybody or personalized it because I'm a gardener, but I liked it anyway. She said to liken breast cancer to Bindweed -- you can remove it from the garden by pulling it out of the ground (i.e., lumpectomy), and even digging out all the roots you can find (i.e., getting clean margins in surgery), but you have no idea where the Bindweed has reseeded itself. It's logical that those 'seeds' would be in the nearby area, so radiation is the Preen (pre-emergent that keeps seeds from sprouting into new Bindweed plants) that kills off the seeds of cancer so they don't grow somewhere else.

Understandably, the most common area for spread is to the lymph nodes, which would normally branch out from the breast and into the underarm and beyond, but we'll be irradiating the area from the lymph nodes along the breastbone across the chest to the underarm. The second most likely area for breast cancer to spread is the muscle wall of the chest and into the lungs.

Next stop was an exam room where she gave me a rather thorough examination and expressed concern that the antibiotics Ferg gave me weren't strong enough, so we're going to watch that closely. {Note: the infection has cleared up thoroughly and my incision and breast tissue have returned to a normal, healthy color.} She marked me in various areas with a turquoise Sharpie pen. Then she asked me something that surprised me a bit: "How happy are you with the results of your surgery?" I haven't really examined why she'd ask that until now . . . and I'm supposing it was to get a feel for how I was feeling about how it looks, my perspective on my treatment to date, or maybe testing my confidence in my surgeon, I dunno.

She said there's nothing to be done about the hematoma except the passage of time. Taking action for them most commonly leads to more infection and complications, so we'll be leaving it alone. {Note: it's decreasing on its own.} Then came the fun point of our conversation: I can't wear my bra while I'm having treatment. This was no surprise since Pam warned me about it, and my bra almost passed, except that it has exposed elastic around the base. So she recommended a sports bra -- and even showed me hers; that was unexpected!

Next stop took me around the corner for a CT scan. This was the trying, laborious part of the visit because it featured me lying on a freaking hard table nekkid from the waist up in a very cold room, with my (rather prominent) chin pointed up and toward the left, my right arm draped over an elevated guide above my head, and my left hand looking for something to hold onto so I would fit into the opening of the donut that is the CT machine. For an hour or so. After Bev had put little metal markers on all of the doctor's Sharpie marks. While Bev and Tiff looked at the CT, adjusted my position, marked me up with different colored Sharpies, looked at the CT, adjusted my position, repeat.

The finale, of course, was three pin pricks into my skin to tattoo me with India Ink in order to guide the cross hairs for my actual radiation. Unfortunately, she covered each of them (one between my breasts, and one on each of my sides) with a little strip of clear tape which has been extremely annoying but I'm not allowed to remove. Guess I failed to remind them of my sensitivity, no doubt inherited from my dad, to adhesives. My appointment was scheduled for 8 am, and I got to work (literally next door) about 11:30.

Tiff and Dr. Perez-Tamayo will use the data from the CT study to develop my treatment strategy. I return for my 'simulation' on Wednesday, the 29th. As I understand it, this is where they will complete the calibrations for the actual radiation, and I'll start my radiation treatments on either Thursday (I hope) or the following Monday (hurry up and wait some more). I'll have a total of 38 radiation treatments; so if everything goes as scheduled I'll be finished right around Christmas. I promised Al last year that I'd really get into the Holiday season this year, go all out decorating, baking, etc. We'll see.

Worth the wait

THIS time!!! I heard from my oncologist's office today; they had the results of the Oncotype Dx test. My score is only 11, which indicates I don't need chemo. Join me in saying

I don't know why it's not dancing, like it does here.

The test is a scale of 0 to 100, with 0 being the best. I go back to see the oncologist tomorrow, and I'm scheduled to see the radiation oncologist on Wednesday morning.

FINALLY, we can get this treatment moving along.

My infection appears to be improving. I'm off to apply a little moist heat, read a bit and hit the sack. Seems I've finally relaxed a bit, and I'm ready to pass out!!!

xoxoxo
Sharon

I've been crying a lot this week . . .

because of a book I picked up. It's called Nordies at Noon, and tells the saga of four women under age 30 in the Kansas City area who were diagnosed with breast cancer around 2002. One of them, Kim Carlson, spoke at Salina's Breast Cancer Awareness Forum this past Monday evening, a nice event that featured booths from several agencies and providers, door prizes, and the speaker followed by a Q&A session.

I don't particularly relate to any specific author in the book, and I haven't figured out why, but every time I spend some time reading this book, I cry. I suppose it's because I should cry about having breast cancer, and I have, and I occasionally do -- usually at the most inopportune times, of course. But what's the point? It accomplishes nothing! But I've decided to just give in and go with it. Seems to help bring the stress level down a bit, so maybe that's the point of crying.

Fact of the matter is, I don't feel any different than I did six months ago. Til I take my clothes off or stretch my arm a specific direction and there's my reminders, lol!

So, I had an appointment with Ferg (my PCP) today for my annual check-up. Not much change there than in previous physicals, just skip the Pap smear. She's so great; I'm really fortunate to have her in my corner. The two big points of the appointment were (1) she agreed with me that my incision looks too red to not be hosting some infection (so I'm now on some pricey antibiotics), and (2) I have a month to schedule a colonoscopy or I'll be hearing from her again. I think this is unfair, as I'm not 50 yet!!! But considering our family history of colon cancer, I'm not going to complain. I figure if I need to have a port installed, I'll schedule both procedures for the same day and kill two birds with one stone. If I don't need a port, I'll just do my I-don't-need-the-chemo conga all the way down to the hospital and just get the scope over with already.

Oh, yeah, one other thing now that I think about it. The lab that's doing my oncotyping called me after they checked with my insurance for the test (yes, it's covered). But she gave me a toll-free number to call to check the status of the lab work. So I called. Waiting is hard for me. But they didn't receive the sample until the 10th, and the labs take 10-14 calendar days, so I may not have my answer until the end of next week. Hurry up and wait some more.

I'm off to fetch my jammies and my book, and get to bed early. After I finish reading, I lie in bed planning the new flower bed Al's prepped out back. So far, it's been orange and purple, shades of yellow, bright reds with chartreuse, and PAINK (that's Southern-speak for seriously pink; I learned the term on-line). Hmmm, wonder how many variations of pink I could come up with . . . maybe I'll work at naming them as I'm falling asleep tonight.

I couldn't get to sleep last night for whatever reason, so I plan to make up for it in a big way tonight. And bonus . . . no alarm in the morning. WOO-HOO!!!

xoxoxo
Sharon