From the Hubby's Chair

Fuzzy hair!  Kimberly has the cutest, curly hair.  We are told it sometimes occurs after treatment, as the hair grows back.  Very cute.  We laugh about it all the time, since her hair was so straight before.

Apologies for my absence.  I started this thing and then somewhere fell off the wagon.  Busy with stuff, as you might imagine.  I've kind-of had my head down working away.

Kimberly looks great and she is still fighting hard.  As she has posted, she is now a survivor.  There are still many doctors appointments and a lot of side effects that are ongoing.  She has quite a battle going with the neuropathy, which causes her hands and feet to swell and get sore everytime she stops moving.  She takes meds for this, but it's unpleasant and a reminder of what she has been through.  We are told that this should fully pass.  Vision is another issue and we are unsure what will happen with that.  And there is fatigue, the best treatment is a nap when time permits!

Kimberly deals with these things positively and actively.  She exercises, takes her meds and eats lots of the right things.  During treatment they tell you not to take any supplements, including no added antioxidants.  I guess the logic is that if you strengthen your cells, the cancer cells are also strengthened.  With that limitation removed, she is making her kale shakes and loading up on the good stuff.  It's not easy, but I admire how she does what she knows is going to make her better long term.  Pizza is good for you, too, right?  Reminds me of my mother, who had several surgeries over the years.  She took care of things when they happened, and she is a spry 78.  Just keep her away from the water. ;)

K has a round of tests that were ordered due to some symptoms.  Should be nothing but it's always nerve racking to go in for scans and needle tests.  The first round of scheduled tests happens in November.  We will be glad to get those behind us with a clean bill of health.

Many of you know the Komen run is coming up on October 16th at UCF.  We will be out with most of you, trying to raise funds for the cure.  Looking forward to it!  Thanks to all of you for supporting Kimberly and I through this ordeal.  We have been blessed in so many ways with so much help from friends and family.

July "cancer free" update

Hello friends and family!

We are three quarters through July and I am still cancer-free. Thought I'd just toss that out straight away!

Summer is flying by, and I think it only just started! We've been busy. It seems everyone has. Doesn't it seem like this is the summer of travel-vacations? Richie and I went to Atlanta for our yearly July 4th Peachtree run, and Bullock family visit. This year was special for so many reasons. I'll list them in order of occurrence.

Stayed at the JW Marriott. Love love love Marriotts!

Had dinner with the Bullocks--usually we don't see them till the fourth because they are at their Lake house while we are in the city.

Had drinks and reunion with Michelle "ma belle" King Slater. Have not seen her in years! That was probably the highlight of the trip.

Ran from a chute!! ie did not jump in, with Freckles and Stick-man and Devil Dog (him for all of thirty seconds!!! He disappeared after we crossed the start line. When questioned as to whether or not he looked for us, he gave us the most innocent look and said, "No." He cannot tell a lie!)

Made it to the Varsity, Lon included!!

then we listened to the ART Of RACING IN THE RAIN on the way home.

Great trip.

OK, so maybe I overdid it a bit, even though I went to bed at reasonable times and took naps (as I do every day now out of necessity) because a few days after I got home i got Bell's Palsy!

What is Bell's Palsey you ask? (And a few of you are saying, isn't that the virus that makes your face look like you had a stroke? Surely not) Surely YES! Remember Tommy Boy, the movie? Where he says, "Does my face look funny? Not so much here or here, but RIGHt HEre." yes. Left side paralysis.

Of course I had the fear hit me--is this cancer again? I went to the neurological office I go to for the neuropathy I'm being treated for. I was told I had a mild case of Bell's palsy, with a slight possibility it may be a symptom of cancer tumors floating along my spinal chord.

Oh, yes. Can you believe it? The thing was, if the face improved, it wasn't cancer. The proverbial take two steroids and call me in the morning. I am happy to report, I am almost 100% healed. Lucky me, I just got a new nerve virus, but not cancer. :-)

As far as the neuropathy, the Dr has found the right mix of drugs to keep me pain free. I keep lowering the doses myself to see how little I can take and have regular use of my hands and feet. I'm trying to keep the meds as few as possible because of their side effects. Swelling and weight gain and increased fatigue, which is already a major complication in my life.

I used to say i was like a little baby, crying whenever I got over tired. Now I am a kindergardener. I nap every day from 11:30ish to 2:30ish. Out. Like. A. Light.

My skin is continuing to heal, my muscles are getting stronger, my hair is growing and it is a curly hot mess! I love it.

I have a PET scan scheduled for November 2nd. That is the big one, to see if all this nonsense has worked.

My MOM. She has started taking her Femora, and as a result is seeing her hair thinning out, but otherwise no bad side effects. She is recuperating from her radiation treatment, and Like me, needs a lot of sleep. She had an MRI last Monday. I will report on her progress when I write again in August with my monthly update. :-)

Happy Summer, guys!

Past Time for an Update

It's been a long while since Richard or I have updated the blog, and I apologize. I kept meaning to do a wrap-up post, and time kept getting away from me. But finally, here it is!

My skin is healing from the radiation burns, and thus far, I have no adverse side effects. My lungs are clear, my heart beat strong. I am back to doing stretches and yoga to rehabilitate my shoulder and arm. I'm getting stronger every day, and I love it. Next week, I'll return to physical therapy where the therapist will work on breaking up scar tissue inside the underside of my arm and help me to recoup my range of motion. She's fabulous.

The last I wrote, I said I would come back with information on the peripheral neuropathy I contracted from the chemotherapy treatments. I saw the neurologist oncologist at MD Anderson, and he gave me a thorough exam for balance, muscle strength, and sensation in my extremities. The bad news is, the nerves will likely continue to worsen. The good news is, meds can blunt the pain. The GREAT news is, the doctor is confident the neuropathy will not be permanent in my case. It will probably take a year or so for the nerves to heal...but they will heal. I am soo happy about this.

The medicine cocktail I'm on currently is working very well, and most of the time things don't ache, burn or hurt. I can especially tell the difference in the mornings when I get out of bed. Whereas I was hobbling to the loo and tripping down the stairs, I can walk again--slowly :-)--and I can go down the stairs holding the rail with only one hand. It's very encouraging. One terrible side effect of the medicine is swelling and weight gain, both of which I'm working hard to control. So far, the side effects are worth the cost. I'll let you know if this changes. :-)

I have several appointments in the coming weeks. June 28th with the neurologist oncologist, June 29th with the radiation oncologist, and July 8th with my oncologist. Since my doctors were very concerned with recurrence, which in my case will be fast and dirty, or (likely) not at all, I imagine this last appointment will herald a scheduled PET. With that in mind, I will probably wait to post again until early July, when I should have some news.

I can't thank my friends and family enough for all of your support, all of your prayers, and for sticking with me and Richard during this trial. God bless you and keep you.

Until July, then. Muah!

Can NOT believe it

I have one day of treatment to go. One more day of checking in, putting on my gown, and waiting to be called. One more day of laying on that table, hands over my head, to be lazered. I am so excited!

It's slightly anti-climactic, since I have to go in Friday to meet with the neurologist...but still. :-)

Many of you have asked about the neuropathy. It is getting worse, but I am remaining hopeful it won't be permanent. I would describe its affects again--but why beat a dead horse? Most of you already know about the sore hands and feet, etc. The reason I'm seeing the neurologist is to get a thorough assessment of the problem, and ask some questions concerning long term prognosis, medication, and alternative therapy (herbs, acupuncture). I will let you know what he says. I'd like to take as little of the Lyrica as possible--the drug I take for the nerve pain. It makes me feel kind of sloooow. (yawn) And my wedding ring is permanently embedded in my finger. (swollen) But it's undeniable that it helps with the pain. I know because I have forgotten to take it. (ouch!)

But back to the way more exciting topic. The end of cancer treatment.

I have weathered the radiation very well. I am burnt, and I sit at home with my shirt unbuttoned like a garage mechanic at five pm. But my lungs don't hurt, and thus far, I don't know of any long term mal-affects.

What will I do with my freed-up time...? Recuperate. Exercise. Visit. Write. Paint. (I am repainting a piece of furniture I've always wanted to paint as soon as my skin can stand the heat.) I will not be bored.

Being finished with treatment...being cancer-free...I can't describe the feeling. I feel happy. Relieved. Almost elated. But there's also this odd sensation. Imagine you just gave a speech. Then you asked your audience, "Any questions?" and no one had any. You're finished with your speech, though. So you just kind of...fade out. "Ok. Well, thanks."

Yes, that's it. A strange odd finish to a huge undertaking. No drum roll. No big goodbyes with your doctors and nurses. Just life as usual. Just walking out of the building, others walking in, like every other day, except today your treatment is done.

It's odd. But it's really, really good.

What a difference a day can make

First of all, thanks to the friends and family that responded to my last blog, giving me "permission" to feel sad, mad, and basically out of kilter. I really needed that. I'd been trying so hard not to break--though I saw myself in such disrepair I belonged in a junk yard.

But after I gave in to the breakdown, after I prayed, and listened to wise counsel, and heard from Him, things changed.

Let me explain. It's about "Truth," and how the way we perceive it affects our attitudes. See, if you change your perspective, just a little bit, your whole outlook can change.

Your truth can be perceived differently and still be true.

I have been physically altered, have neuropathy, have gained weight, am in pain, and am sick of all this nonsense. True.

But...as I look from another perspective....I am not my hair. I am not my boobs. I am not my running. True beauty does not come from thinness. (Though I still prefer it!) I can still walk. I can still love others. I will be done with radiation in a few weeks. I am exactly where I need to be to fulfill the story of my life, and God's perfect will for my life, and I surrender. Also True.

And for the moment anyway, I am at peace.

p.s. For details as to the way He spoke to me, email me privately.

Never claimed to be well adjusted

I am sitting here in the waiting room for my radiation treatment. The treatment itself is painless. But the result...My skin is burnt & it hurts & this is only the start of my 4th week. I keep hearing my mom in my head as she quoted a nice young therapist from Florida hospital who called her on the phone when she couldn't track mom down any other way. :-) "radiation sucks," she said. "It sucks sucks sucks sucks sucks." (at this point mom took the receiver away from her head and ogled it in wonder)

But the woman was right. Kind of.

To be perfectly honest, this is not an easy time for me & radiation is only part of the puzzle.

I've hesitated to write this in my blog because it is personal and it makes me feel vulnerable, but it's part of it. This is so hard. It is. I'm sure I should be feeling ok by now. Settling into my own skin. And I try. And many times, when I am sitting, talking with someone or doing something, I forget. Then I stand up & can't walk because my feet hurt & I shuffle along, feet & hips like a 90 year old & you can bet I remember. Last night I woke to the sound of my cat yowling outside. She's a true "scaredy cat," and I didn't want her to get into it with whatever critter was threatening her, so I bounded out of bed & shuffled as fast as I could to the stairs then worked my way down the stairs, holding the rail so I wouldn't tumble to the landing. And I remembered.

The chemo was ok. The radiation is ok. The after effects are another story. With chemo, it's this neuropathy. I just can't believe this is my body! Who knows what the radiation will leave me with.

I already know what the surgery left me with.

The surgery & the changes to my body & my physical weakness & frailty--these things make me sad. I wish I was better adjusted. I do. I wish I could get used to looking at myself in the mirror. I wish I didn't mind the flab. I wish I could deal with this neuropathy without complaining. I wish I could just bloom where I'm planted. But so far, I can't. As days go by, you'd think I'd improve. But I'm not really. I'm not my normal self. I don't feel normal. I feel really really upset. Every day.

I think when the radiation is through & I start to heal , & my hair is back, & if I lose the gut and the new cellulite, & if my hands & feet stop hurting & I quit dropping everything I will start to feel better. But right now, I feel like doodoo.

I'm sure other people go through this & come out fine. My mom did for instance. Surgery didn't seem to effect her at all--She just took it in stride.

I'll get there. There is no other alternative. But for now, this is how I feel, & even as I write this, I know most reading will not really understand. Not really. And truthfully, I hope you never have to.

wondering what's on the other side

Hi there. I've wanted to post an update, but I've hesitated to do so because I'm not too sure I want to put all that's running through my head down. Let me try to muddle through.

Radiation is going well. My skin is turning pinker as anticipated and predicted. It makes it easier to put the ointment in the right place. :-) I get fatigued, and come home and crash sometimes. I try to do too much and find myself cranky and wondering why I'm cranky, then I realize I am past my limit. I trudge up the stairs, eyeing the growing piles of dog hair with contempt. I remind myself having the hair is worth it--I love my black dog club so much. I just wish they'd keep their hair! I don't want it! I wander around on the look out for cat pee, hoping it isn't there because I am too tired to clean it. (Remember I have the crazy cats that like to pee inside whenever possible making any kind of rug or carpet impossible. I can't stop them and I can't give them away and I can't kill them. Can I? Just kidding. Anyone want a cat?)

I am sad my mom had such a bad reaction to her radiation. She had to be admitted to the hospital to get all her systems working together for her good. Oddly, I did enjoy the time spent with her and my sisters in the hospital. As my mother-in-law says, It's a foul wind that doesn't blow someone some good.

Speaking of which, the lady who checked me in for my surgery who had lovely nails and who gave chemo the credit for said nails, evidently wasn't joshing. I have pretty nails for the first time in my life not counting acrylics. I keep waiting for them to go back to the way they used to be, but they just keep growing. :-)

I am stretching out my arms and shoulders daily and gaining range of motion and strength. My physical therapist says I can cut down to one day a week with her 'cuz I am doing "amazing." I am so happy and proud. Can't you just see my silly little grin? I love to be told I am doing a good job. :-) Especially as I am obsessive about my exercise and following directions to a tee.

As the fears of lymph-edema fade for now, the increasing severity of my chemo induced neuropathy sucks the joy from my victory. My feet hurt, like someone beat the soles, and it is terrible to step on the floor in the morning when I wake. I am like a freakin invalid walking down the stairs to make the coffee. Morning is the worst time. It does get better as the day goes on. My hands hurt. Like I've been gripping something really tightly for hours the day before and now I'm sore. I drop things. Light things--not heavy thank goodness. Plastic cups just slip away from my fingers like Styrofoam coffee cups with static. My toothbrush ejects from my fingers as I brush my teeth. Richard just looks at me, as I look at him, and bend over to retrieve it.

When I get up from a seated position, and my feet hurt, I think how the hell am I going to work? How will I walk in my princess pumps at work? How will I stand working twelve hour days--even in my ugly in-flight shoes? (non flight attendants, in-flight shoes are the ugly black flats we stews change into during the flight when no one's looking)

I wonder anxiously if I can work while taking the medicine I take for the neuropathy? Without it, I can't function. But I suspect it's on the no-go list. I tell myself not to worry; the neuropathy will fade. God, I hope it does. I pray it does. I really do.

Speaking of the medicine, guess what? My favorite topic. Weight gain. Yup, it makes you fat.

This just keeps getting better.

Or maybe everything is exactly the same, and isn't that just ridiculous? I'm fighting for my life, and I'm still worried about getting fat, being able to use my body as I see fit, and getting published. Speaking of which, I got another agent rejection in my electronic mailbox. She'd requested two "fulls" (publishing speak, that means I gave her the premises and she asked to see two of my books in their entirety. Asking for a full means the agent/editor means business.) Alas, she passed on signing me.

I wish I could say I am taking all of this in stride, with a smile on my face. But I'm not. Thank God, He makes every day new. For Richard's sake, if not my own, I will practice smiling today and see if tomorrow a great big toothy smile sticks.

Even thinking of smiling like that makes me smile. Isn't that weird? Tata, friends.

Not too much to post, but I'm posting anyhow because a few of you have let me know you check in regularly to see how I am and what's going on. I appreciate your care, and your going to the trouble to read.

Life's been busy, kind of tumultuous, but not necessarily because of breast cancer treatment. I think the fact that the world's wobbling on its axis since the earthquakes and tsunamis of late has set people to spinning in their personal lives. Who needs a full moon or Mercury to go into retrograde! :-)

Or maybe people being people have just had too much land on their plates recently. A lot of change in the air. Even good change is stress causing, right? Try marital problems, family squabbles, people losing jobs, losing loved ones, facing jail time, suffering with debilitating pain, and let's not forget earthquakes and the ol' mid-life crisis or two. Good luck people! Things will get better!

So. Cancer treatment. For me, so far so good. For my mom, owy. Please say an extra prayer for her. The radiation has done a number on her, and though she is through with her three week dose, she is still feeling the burn throughout her body. It really stinks when someone you love is in pain and you can't do anything to help her.

I will be two weeks through my radiation following tomorrow's treatment. I find myself getting tired more easily, and having sensitivity on my skin, and some headaches, but otherwise feeling pretty good. I am healing well from my surgery, and have begun physical therapy. The PT showed me some stretches and strengthening exercises, and while I'm with her, she does soft tissue massage. It's not what you think--or at least it's not what I thought it would be. Actually, I don't know what I expected, but it wasn't this. She sort of works the scar tissue. For instance, where the lymph nodes once were--the inside of my left arm--the vessels that once held them remain. Apparently they want to gum up the works, so she sort of works them like you do when your toothpaste tube is almost empty--a pressing pulling motion. Yikes! It burns. But not so bad I can't take it. Every so often she looks at me and says--OK? I give her a grimace--I mean smile--and say sure.

I ran recently. It was so exciting. I would not have considered trying, but the day before, I was listening to a song I really like playing on our computer upstairs. I realized I had to take something out to the recycling bin before the trash men came. I ran it out, and ran back in, literally. And it didn't hurt my arm. Hmm, I thought. Might I try?

The next morning, I asked Richard to go for a walk with me. I told him I might try to jog a bit. I ended up running 2.4 + miles, and walking .6 or so to get home. My knee pinged a little, but my lungs held up nicely. I was listening to music the whole time. Music sometimes can just hit that spot, ya know? Von Ra's Shine played, a poignant song about a musician's need to make it. He sings it so you can feel what he feels, as he digs in his heels and puts his head down and refuses to quit. You can see how that would be a good running song when you hadn't run in months. Then there was Remember What You Like, by Jenny Burton. Ok, I doubt anyone knows who she is. I'll just say, in the early 80's, I listened to her album over and over and over. (On second thought, maybe my mom would recognize the sound (heehee)). Recently I got a wild hair and looked Burton up on Itunes, and bought the album. That song is dancy and ethereal at the same time, and it takes me back to a time when I didn't know what was next and anything was possible. Again--it made for great running. The last song was by the Babies. Remember Change?

People talking, and they're sayin' that you're leavin'.

You're so unhappy, with the way that you been livin'.

Oh, we always wished for money, we always wished for fame,

We think we have the answers,

some things aint ever gonna change.

It doesn't matter who you are, it's all the same.

What's in your heart will never change.

I can't tell you why I love to run to that song. I just do. :-)

As Richie and I walked the last bit of the 3 mile loop (he, btw, ran further than I did. Just have to give him credit!), I found myself crying. It's not the first time this has happened. When I ran during chemo, I would sometimes cry then too. Richie, I'm sure, had no idea. It wasn't a big commotion. I'm sure he just thought I was catching my breath or wiping away some perspiration. I don't know exactly why after I run I am sometimes moved to tears. Because I've actually done it? Because I have so far to go to get back where I was (as far as physical fitness--not to my house heehee)? Because I may never get there? Because life can still be so darn good--when you're just running, and it's sunny, or even raining, and your legs are moving over the ground? Don't know.

Meanwhile the neuropathy keeps progressing. I had no idea when the docs talked to me about this possible side effect of taking the Taxol--nerve damage--it would manifest months later. And not as "tingling fingertips and toes"Not that I could've opted out of the chemo. But it is a big big bummer. I had mentioned in a previous post my feet hurt when I got up from sitting or lying down, but after a few seconds of moving around, they no longer hurt. Well, now they keep hurting. In addition, my hands ache, and I am dropping everything. Miss butterfingers. And I'm clutsy. I fell down the stairs recently. (I managed to catch myself with my owy-arm, so no brain damage. :-)) The neuropathy may or may not be permanent. Everyone tells me to think positive, and I am. But, in the back of my mind I think--will I have trouble walking forever? Will I not be able to run, ever?

The good news is, there's medicine for the pain. The bad news is, it causes swelling, and sometimes--duh-nuh-nuh--weight gain. Can you see my face expression here? 'nuff said. Pray for me--that this won't be a permanent condition, or if it is, that I will have the mental toughness to handle it.

Thanks for reading and happy Easter, everyone!

Radiation Begins

Today is day three of my radiation treatment. Six more weeks to go! :-)

So far, so good. I am not suffering from any side effects yet, and I am told I won't for at least a week, maybe longer. In the meantime, I am trying to do a few things for myself and for Richard--like getting up in the morning with the animals, making coffee and delivering it to him for a change!, fixing meals, etc. I will be feeling fatigued soon enough, (it's a pretty universal side effect) so I might as well enjoy my improved energy levels now.

The radiation routine goes like this. I park, walk into the office and scan my appointment card under a hand held laser to let the techs know I've arrived. I take myself to the changing room, put on a gown, and head to the radiation waiting area. Hardly a minute goes by before one of the techs comes to collect me.

They walk me back to the radiation room, I strip off my gown, and lay on the table. Same position, every time.

Before radiation even begins, the docs tell you about these tattoos you will get, meant to guide the radioactive beams on your body. Hmm. Well, I did get some tattoos. But they are nothing compared to my new chest markings. Markings made with permanent black marker. Lines, boxes, dots, covered with clear tape. I look a little like a puzzle.

"Don't wash these off!" they say.

"Ok," I say. "For how long?"

Blink. Blink....

I can see they don't know how to put this gently. So I wager a guess. "Seven weeks, or so?"

The techs smile. "They might fade."

Good, I think to myself.

"Then we will redraw them," they say cheerfully.

Oh, well. The marking extend under my arms and up to my collar bones. I am thinking of drawing a flower on the top of the most visible line, the one that shows no matter what shirt I have on unless it's a turtle neck, and as it's 85 in the shade these days, I'm not likely to wear one of those any time soon!

The black marker is a small inconvenience at this point. After losing my hair, and eyelashes, and gaining weight, and undergoing surgery and having to give up most normal activities, a little marker showing through my clothes is no big deal. On a happier note, the reverse of some of the trials I mention is so encouraging. I am tickled to have hair on my head, eyelashes to which I can actually apply mascara (though I will probably continue to wear my false eyelashes since I have become an expert at applying them!), and decent looking finger nails. Best of all, I am happy that I have six weeks of treatment left, and hopefully no more for the rest of my life.

One bit of info for any of you who know someone who is or will undergo chemo--specifically the sort that leads to neuropathy. I underwent chemotherapy for six months. The last three months I had a once a week dose of Pacitaxil (not sure of the spelling). I took B6 and a multi B vitamin to prevent long term nerve damage which can result from neuropathy--a side effect of the chemo. This is where a person can't feel her fingers and toes, or at least that is how the nerve damage was described to me. I got a bit of that toward the end of my therapy, and the docs backed off on the dose. Then chemo was over, and I thought that was the end of it, especially since i was told I no longer needed to keep up with my B vitamins.

A few weeks ago, I began to notice that my feet hurt when I got up from sitting, reclining, or lying, even if I'd only been off my feet for five minutes or so. It was a pain that I dismissed at first, as nothing more than an old age ache, but it kept getting worse. I found myself stumbling around like Frankenstein, unable to really use my feet when I stood, until I'd moved around for several seconds. At night, the pain extended to my hips and hands and elbows. Eventually, I could not find a comfortable position while resting--even on Frank's temperpedic!

I knew these were not normal aches and pains, (and may I say at this point I trust my instincts when it comes to my body, since my instincts probably saved my arse this go round.) so I looked it up--God love Google. "Feet hurt after chemo," I typed. I was hoping not to find I had developed arthritis after all this, and thought chemo was a good starting place. Guess what? It's neuropathy. Evidently, neuropathy is not just about numb fingers and toes, and apparently, the symptoms peak 3-5 months after the last dose of chemo--something I was completely unaware of. My last dose was February 13th, which puts me two months out. Mystery solved. Hopefully this will shed some light on this phenomena for some other poor sot wondering what in the hell has happened to her feet now that her chemo is in the rear view mirror!

That's all the news fit to report for now!

Have a wonderful rest-of-your week. Muah!

Four weeks and two days out of surgery and getting more human every day.

I have several updates.

First, exercise. Remember how I said I felt like I should be doing some kind of exercises, but I could find nothing on-line, and no one from the hospital had given me any sort of instructions or direction and this seemed odd to me? Well it was odd. And the lack of knowledge created a delay in my treatment. That is a fact, not a complaint. In truth, I am grateful for the snafu. I got to wait ten more days to start radiation.

My radiation mapping appointment went like this:

Nurse-"Ms. Hayes, can you lift your arms over your head?"

Me-"No."

Nurse-"Have you been doing your exercise?"

Me-"No."

Nurse-Blank look.

Me-"What exercises?...Does this mean I don't have to start today?"

She'd ask the doctor she said, but she didn't think so. Then my radiation oncologist came in and said, let me see how far you can go. Now picture me sticking out my arm, and really struggling, and it won't go even with my shoulder. Even when Doc tried to force it up there! (Thanks buddy)

For those of you with friends or family who may go through the type of cancer treatment I have, take note. There are specific exercises advised, starting around day seven post surgery (ouch!!!) meant to prepare your shoulder for overhead movement. (3):

1. Walk fingers up wall, sideways, and shimmy into the wall until hand is flat on wall, arm straight up, body next to wall. 2. Arm circles, as far up as you can go, as far back, down and around. reverse. 3. Put hands on head, both at the same time. Walk hands down back of head and try to walk them down back.

I am getting more flexible every day! And the pain is less every day. As the pain goes, my mood improves. I will go in on my revised date, April 4, for mapping.

The doctor says I am well within the optimal time to have effective radiation. Effective meaning no stray cancer cells will make it out of the area. But, btw, this treatment is viewed now as strictly adjuvant therapy. In other words, the treatment is preventative because I don't have cancer anymore. Doesn't that sound wonderful? I'll say it again.

I DON'T HAVE CANCER ANYMORE!

Second update, new date for radiation.

The optimal starting range, post surgery, for effective radiation therapy, nationally, is 6 to 8 weeks. Studies show an increase in recurrence when people wait to have their therapy starting at 8 weeks and up. MD Anderson strives for starting their patients in the 4-6 week range. I will be starting at 5 and 1/2 weeks. Pretty good. (Who was the nut that scheduled me for 3 weeks and one day?!)

I view the snafu with my exercises as a blessing from God! Maybe I'm a slow healer, but I was in pain, (I don't want to call it severe, but I will say, it made me feel hysterical after a while. Like a burn you can't ice.) even the day I went in for mapping. I kept thinking, how am I going to stand this burn on top of already burning skin?! And then I didn't have to.

My dear friend, Linda, came over this week with dinner and her beautiful company. She marveled over my taupe colored--or maybe pewter?--hair. What in the world color is it anyway? None I've ever bought, I assure you. But it doesn't matter. What matters is, I am growing a head of hair! And as my friend asked other questions, whose answers made her smile, she said I should share these milestones with you. "People want to know your successes" or something to that effect, she said. So here are a few.

Everyday (minus these last few monsoon days--can you believe this weather?!) I walk. The walks vary between 2 and 4 miles. They are sloooow. But I am moving.

I can't walk my dogs yet, but I can walk my DOG. Singular, Frank, the vietnam vet turned pacifist known in many circles as friend frank, leader of the society of friends. (He's a pacifist now. Except for the mishap with the last leader of the society of friends. Probably why he doesn't pull me with his leash.)

I feel better.

I can put my arms over my head.

I have taste buds, don't feel sick, can have wine :-) (Until radiation starts. But who knows after that? I get conflicting stories.)

My fingernails look better than ever!

Third update, mom.

Sometimes good comes from struggle, eh? Like the fact I am home because of all this, not flying, so I can be here while my mom goes through her treatments. She has learned her cancer is in her entire spine, in her hip, and two ribs. She will go through two courses of radiation, because apparently you can't nuke the whole spine at once! She has already started her radiation. Today is day three! She is facing it all with a smile on her face and an eye to the big picture. I know this because she writes to me most days. Her words are picturesque, I see nature and seasons and rain and the sea in her words. In her strength and peace I am very encouraged! My mother has always been an artist. A pianist, a painter, now a painter of words.

A quick shout out to Strutter and Crash who came by to drop food and encouragement and an offer of dog walking. (Sorry I didn't take you up on it Dennis! I could not ask you to take them in the rain!) To Frex who came and cooked me dinner, then another time braved the Bible study gals (an awesome group of women, but she'd never met them!) To Linda for the wonderful birds and company. To Stephipoo for her visits and for walking my babies. (And me!)

To Babbette for all she does, cooking, sitting and watching tv just right heehee! for vacuuming. For listening. For always being there for me to "call first thing in the morning." To Pammy for visiting and trying to make my vacuum work! And for polka dot socks :-). To Kim B for...Kim B. To Mr. and Mrs. OAD, aka John and Sharon Corbett for stopping by the hospital on d-day, then sending gourmet dinner! To Rose, for shopping and sending lots of love and support! To Rosemary for texts about Vivi-choos and for understanding how important a clean house is and for having made sure my floors were clean for months!!! To Richipoo for being strong, loving me so, and working your butt off!! To Lon for taking me on all your marathons (I've done three now. One day I will do one with my own two feet.) and for so many other things. For MJ and Bill for constant messages of love and support. For Collyd, innumerable thanks for your sweet friendship. For Al for being my belle-fille, and for coming home from time to time to brighten my day. I could go on...but I will stop by saying thanks to all who've been wonderful and made my life better, especially these last months. I close with thanks to my mom. For being strong. For encouraging me. For being part of who I am. Mom, I am a diamond, I cannot be broken. And so are you--I was cut from you...

Dog talk

Kimberly and I were Dressing this morning, having our dog talk as we do anytime an appropriate topic or new event comes up. We have conversations on behalf of our dogs. Each has a distinct outlook on life. Frank is the war veteran, world traveler and mommy's boy (to name a few of his attributes). So you can bet when Andy attempted to blame him for the dog hair on mommy's clothes he had an answer! As I started speaking it, Kimberly shouted omg!! I jumped and looked at her half expecting to see something wrong. She was simply about to say the exact same thing, on behalf of frank. This is something I have to fight daily. The fear that the other shoe is gonna drop. I mean another shoe. Seems there are so many people we know, family and friends, struggling with various life challenges.

We were dressing for a litany of appts Kimberly has today. Follow up with oncologist, mapping and simulation for radiation, and meeting with rad oncologist. Yes he's so RAD!!

Kimberly is steadily Recovering from surgery. It was a bit longer recovery time than we expected but right on schedule she is rising for the next round. Coming out of her corner like a prettier Rocky Balboa! The third and final round, we hope and pray. Btw, Andy was busted. Again. He says "I'm always in trouble".

One more thing, Kimberly came to MD anderson today adorned in a cute little, comfy new outfit, pretty little jewelry and make up, but only the new growth on her adorable little head. :). I love it.

To exercise or not, that is the question

Good news! Just when I thought I'd never be able to sleep comfortably again, I had a restful night, relatively pain free. Picture this, lying on your back, arms at your sides. The part of your arm that touches the mattress, from shoulder to elbow, burns like the dickens. Like you are actually suffering from a real burn. Imagine lying a real burn on a mattress. On anything. It doesn't matter how soft the material is, it still hurts!

Ok, so that's why I'm encouraged today. The burning is better.

Also the pulling sensation is better.

I keep wondering if I'm supposed to be doing any exercise. I find a few, very few, articles on-line addressing this topic. Mostly it says you should be doing something by day seven--not that it mentions anything specific. On top of that, the amount of exercise advised seems to to vary by surgery type, including how many lymph nodes were taken, whether any muscles were cut, etc.

In other words, kinda sorta maybe do this or that. My advice? Don't trust the web in this instance. I'd about settled on driving myself to the book store to try and find some information. Look out fellow road warriors!

Luckily, I heard from Yvette, a constant source of good information, and she'd spoken to Todd who is the best doctor in the world, and no, I'm not biased. :-) They tell me I should be moving the arm gently so as not to freeze up my shoulder, but not using it enough to create scar tissue during the healing process. Scar tissue doesn't stretch, and tissue that doesn't stretch doesn't stretch. Ever. Got it.

My dear sister. She always knows just what to say. Usually, she can say it with song. I told her how I feel frustrated by the lack of information, and really by my own physical limitations. And she said--Just a rat in a cage. I said, Huh? She clarified:

Despite all my rage, I am still just a rat in a cage. Sang it, nasally Smashing Pumpkins voice and all. It was just what I needed to put a smile on my face. Thanks, Babette. :-) Love you tons and tons, could not love you more, muah!

Anything else?

What a week. Not that I've been super active, but life just keeps coming. And what I keep thinking about is why do things have to be so hard for people? The tsunami and 8.5 earthquake in Japan really got me going there. While watching it happen on the tv screen, and imagining what those people on the other side of the world were going through, I thought, what if it happened here, now? Especially a few days ago, I felt particularly vulnerable. My left arm aching and feeling like the skin is burned. My chest burning and pinching and indescribable, really. My fuzzy brain from pain and fatigue and pain meds and accepting the person in the mirror is me. I thought, what the Hell would I do if a major catastrophe happened and I was weak like this? And what about the people over there who just came home from hospital? How are they coping?

People always say God doesn't give you more than you can handle. And actually, though it's a lovely sentiment, it's not really true, is it? Otherwise people wouldn't crack and they wouldn't die. But besides that common sense proof, in my Bible study we've just talked about specific verses that say He does allow too much to hit us sometimes. (btw the verse that says he doesn't allow too much is about temptation. He doesn't allow more temptation than we can handle. In this, He always gives us a choice.) But He does, and will, allow "surpassing" circumstances that can land us in deep despair. I think this is where we are supposed to find comfort in Him, and in the knowledge this world is not our home. Doesn't always work, does it? And it's not always easy to say that to someone who's going through tough times, is it? (Unless you're really in tip-top shape and can duck really fast to avoid being clocked by the pots and pans and rocks being flung at your head in response. :-))

To be honest, those things do bring me comfort. For years I've thought, terrible things will happen and I'd rather be with God during those times than alone and hopeless. It brings me peace, even in the midst of sadness.

We watched a really low-budget movie the other night, not so entertaining, but the message stuck in my brain and keeps popping up while I struggle through trying to make sense of this world. Something about the grape vine becoming stronger when faced with harsh climates and stress. That's us too, isn't it? Isn't life just full of these metaphors? Like the caterpillar, who must beat its wings against its cocoon to become a beautiful butterfly who can fly away (and live for a whole day. Sarcasm. The lowest form of humor. I digress. Where was I? Oh yes. The caterpillar.) If we help it out of its cocoon, it is a mangled mess, doomed to death without ever having known flight.

Ok, so I'm thinking life comes at us to make us stronger. I know this is true. And who doesn't want to be strong? But still. Tsunamis, and earthquakes, and cancer, oh my.

I'm doing ok with my diagnosis. But this surgery thing has me so upset. I can't function without help, and that makes me so frustrated. I can't fill up my dogs' water bowls. I can't wear any shirt I can't step into. I can't sleep in any position except on my back. I can't sweep. Can't do any sort of exercise unless I'm holding my left arm with my right. And I feel guilty for being upset by these things because a freakin earthquake and tsunami just destroyed thousands of lives across the sea from here.

And then the icing on the cake. My mom has been suffering with severe pain in her hip, sometimes, her shoulder, back and forth and worse and better for a long while now. Of course she got the standard diagnosis. Arthritis. (Isn't arthritis the catch all?!) And maybe she does have a little arthritis. But that is not all, as it turns out. My mom is a two-time breast cancer survivor of two different types of breast cancer. The second go round, she went for the big surgery and thought she was home free after nine years being cancer free. But this pain thing...She knew it had to be something more than arthritis because the pain came and went and was at times disabling. She went in for tests, unbeknownst to me because, understandably, no one wanted to tell me. Who wants to stress out someone who's already struggling under the weight of her own cross? But when the results came in, she shared. Breast cancer is back. Nine years later. Here's the deal, for those of you who don't know (which would've included me a few months ago!) If breast cancer metastisizes somewhere else in your body, it's still considered breast cancer. So mom has breast cancer in her spine at her neck, and at her sacrum. Totally treatable, the experts believe, with radiation, followed by five years of meds.

This latter bit scares me the most. My mom does not like medicine. She quit the tamoxifen years ago because it was making her feel like an alien in her own body. I understand this! But I want to tell her that's not an option this time. And so excuse me while I tell her: Mommy, that's not an option this time. I will do what I have to do, and I need you to do the same.

God, are you strengthening us again?

Ok, so lastly. I had this dream about Allie. I won't bore you with all the details, but, in it, she was singing and playing an organ of some sort. Beside her sat her roommate, Christina, who happens to be in a band in real life, and she was also singing and playing piano. A young man sat a little further down, playing percussion or something like that. Also singing. I tried to focus on them all, but couldn't. Their faces were so blurry, it was like looking through warbled glass, or, in reality, through my own eyes because the steroids have destroyed my vision. (It may or may not come back.) I said to myself (because I wasn't in the room in my dream, I was just able to "see" and hear everything happening--like the ghost of future) "They're making music! So that's how it's done! And I didn't even know Allie could play an instrument!"

What does it mean, you ask? I'll tell you my take. None of us can "see" into the future. The future will always be unclear because life happens and we never know what's coming. But day by day, second by second, even if we don't know it, we are playing our instruments and singing our songs. We can make a beautiful song. A symphony, in fact! We may not know it, but as we live our lives, as our lives come into contact with other's lives, whether like symbols clashing or voices lifted in harmonies, we are making a song. We can make beautiful music today, regardless of what tomorrow may bring.

Oh, let it be beautiful. No matter what, keep making your music, and raising your voices in song. Let someone say about you, Oh, I didn't know her voice was so beautiful, or, I didn't know he could play an instrument. We can't see into the future, but we will eventually be able to look back. The further away we get, the clearer the song of our lives will ring. And if we are lucky, we will get to know why we carried this load or that, and we will say, I'm glad I faced that. I'm glad for the person I became. And if we are very lucky, people will say, I'm glad for knowing you. I loved your song.

Post surgery update

Surgery is behind me, another milestone passed. I'm almost a week out as of today. Waking up this morning, I felt the best since the operation. It's heartening, and I'll take it because--I won't lie--it's been rough. Kind of a culmination of pain, worries, and reality.

What do people do whose family and friends don't rally around them, buoying them up? I'm so thankful I am not in that situation. I know the love surrounding me and the millions of prayers being said on my behalf are the reason I am, surprisingly, in a pretty good mood most of the time.

But I'm not all the time, as Richard, Yvette, and Lon can attest. Those three had to suffer through my first "big" break down that spanned my first at-home shower and finished after Richard reapplied my dressings and stood by to catch me as I got dressed. Yvette had just arrived to Kimmy-sit for the day, and Lon chose that moment to call. :-) I was glad they were all with me. I've been basically OK since then. Ok, a few crying jags here and there, but no Niagara Falls, which is good considering...

...I have heard the surgery part is the "easiest" to many cancer patients. Really? Not for me. Maybe because chemo was not as hard as it could've been for me and it's in my rear-view mirror. Maybe because I won't believe this cancer is in remission until a year has passed and it hasn't popped up somewhere else. Maybe because I'm in pain, and maybe because I'm so reliant on others. I can't take care of myself. Can't lift, tug, push. (Can't clean. :-) heehee! Oh, darn.) I can dress myself! That's something positive.

Dressing yourself after breast surgery is not a given. I have a little advice for someone who comes home from mastectomy. Regarding a sleep shirt. Take your husband's very large, old t-shirt. Cut it from the neck down, in the back, about half way. Poke a hole in the neck area on either side. Step into the shirt, and then tie it together behind your neck with a ribbon inserted into the two holes. You see, you can't lift your hands over your head to put something on from the head down, and you don't want buttons or anything touching your skin, trust me on this, so you don't want a button down pajama shirt. You can always swipe a hospital gown. I like the shirt idea better. :-) It feels like you left the hospital in your dust.

Later this month (March 23rd) I will have my mapping appointment for the radiation therapy I will receive. I think my first radiation appointment will be March 30th. It's five days a week, for six and a half weeks after that. During those weeks I will be trying to get my strength back to use my arms properly. To be able to run--which requires pumping those arms! To do yoga, and other physical things. I want to feel fit in this body again, not to mention I have to think about work, i.e. pulling and lifting my bags and pushing a 300 lb trolley.

My right arm should not be an issue. But my left arm is minus most of its lymph nodes now. Dr D says he does not believe I will get lymph-edema. Yay! But what will the pressurization on the plane do to my arm? And what about infection? If I am understanding correctly, I have to be more careful with that arm now that the nodes are gone. Apparently they capture bacteria from cuts, etc., to staunch infection normally. Of course I have a success story to bolster my hopes. On surgery day, Mr. and Mrs. OAD came to see me. Apparently in the course of one of OAD's adventures, he had his lymph nodes removed from one arm. He's still running and lifting (and gardening according to Mrs. OAD :-)) with no negative repercussions. He's so cute. No one ever told him he had to worry about such a thing as lymph-edema. And, it turns out, he didn't! Maybe I'll be ok, too.

Today is my post-op appointment, so I better go get myself ready. It takes me a while :-). But the good news, I can do it!

Kimberly is resting after successful surgery

We are here at MD Anderson having just settled into our room.  Kimberly's surgery went smoothly with nothing unexpected.  We got here at 6 and the surgery started at 7:30.  It took a little over 2 hours and I spoke with the surgeon afterward.  Kimberly had a partial radical masectomy with level I & II lymph nodes removed on the left side and a normal masectomy on the right side.  The only thing noted was a swollen lymph node that has been sent for pathology tests.

We had quite the crowd in the recovery room and then in our room.  It was great to see our family and a few friends.  Family not families. :)

K was on some high dollar drugs and we had a lot of good laughs talking with her.  She was making up words and reversing order.  Talking about how she is so lucid because Frank (dog) has told her about his POW days.  Oh and how I "bomb-dived" one of her birthdays.  And how she is glad I don't work in an office.  Someone who was here please post more!

If K is up to it we will go home tomorrow.  3 weeks of recuperation next.  We are so very happy everything went as planned and we can continue on the path to recovery.

Moving on to second stage of treatment

Chemo treatment's done. I am so glad!

The last few weeks of chemo had gotten difficult, mainly because I was dealing with constant fatigue. And anyone who knows me knows I...um...lose my pleasant disposition when I'm tired. Sleeping did not help for long. Exercise did--but not at the end. Throughout the entire course of chemo, I'd been exercising. Toward the third quarter, exercise had been reduced to little bites, just enough to keep myself energized. By the last quarter, especially the last two weeks, even this was hardly possible. It felt like lead flowed through my veins. Using the phone was difficult. Typing. Laundry. Lifting my arms! I still pushed through whenever possible, but it was an uphill battle and I didn't get the energy boost exercise normally gave.

After the treatment ended, I waited for the fatigue to lift, and had just about decided it wasn't going to fade by the surgery date. Then lo and behold! Over the last three days, I've improved markedly. Maybe the good weather had something to do with me feeling better.

Just in time for surgery. :-)

Surgery is scheduled for March 1st. I'm happy to be moving on in my treatment. I'm anxious about it, but ready. The only way out of this mess is through.

In my mind, I'll have four weeks of major incapacity--no walking the dogs, no laundry, no scrubbing, no lifting, no pilates or yoga! (haha) And then I'll start really healing. I'll also start radiation. That'll be another milestone, and at the same time, another hurdle.

Richie is taking me to the beach this weekend. I'm excited though I'm still bald, have a buddah belly, and may have to invest in press on toenails. One last getaway prior to the big shebang.

People want to know how they can help. I've lined up a few dog walkers, and a few Kimmy sitters. :-) (For the first week), so those things are under control. I know I'll want some cooked food, and I don't see myself shopping, cooking, and cleaning up the mess, so this is probably the main area someone can lend a hand. Contact Yvette or Richie if you're interested! Lastly, check in on Rich if you feel so inclined. He's been a rock--but people aren't meant to be tough all the time, or to carry a heavy load without setting it down once in a while. He won't call and ask for a shoulder to lean on. The shoulder will have to come to him. :-)

Thank you family and friends! Mwah!

Kimberly Rings the Bell!

When you first come to the chemo treatment unit, you see all the treatment rooms and so many people.  Most rooms have 4 treatment chairs, each with an IV unit sitting next to it.  While getting your treatment you can't help but see others and appreciate what they are going through.  So many people battling cancer.

Kimberly with Dr. Shah

Kimberly in her treatment room

                                              
On our first visit for chemo, they showed us the bell that you get to ring after your last treatment.  It's something to aim for, and it's uplifting for everyone to hear someone else "ring out".  This past Monday was Kimberly's turn.  The nurses gather around and cheer as you ring the bell three times and recite a little poem.  It was a great sound to hear.

She just rang the bell!!!!

As we left we turned and said "Thanks so much.  Hope we never see you again!"

Sometimes I feel like I'm in one of those...

"One year to an advanced degree" programs.  We have studied and listened, asked questions and watched videos.  We are crammed full of knowledge about breast cancer, IBC, related treatments, side effects, medicines, anatomy, oh let's not forget insurance companies, nutrition...you get the idea.  And you know those one year programs always have tests.     The valet parking guys at MD Anderson know us, know our cars.  BTW, digressing from my digression, everyone there is very kind.

Kimberly had her second PET Scan on Thursday.  They feed you a radioactive dye and then scan your body.  The idea is that cancer cells glow on the images.  This is a huge step in the process.  The first PET, done back in August, came back indicating the cancer had not spread outside the area of her left breast and some left lymph nodes.  That initial test had to be done before they would begin treatment.  In all, I think Kimberly had maybe 6 different tests, and we really had to work to schedule them creatively so that her treatment wouldn't be delayed months.  Between availability of the machines and the required delays due to what they are putting in your body, it took some work.  Back to the Thursday test.  I think everyone understands with a cancer like IBC, once it moves through your body it becomes difficult to control.  When she left, they promised the scan would be ready Friday.  If the test is clean, we schedule surgery.  If it's not, it's back to Chemo and that is not good.

So Friday comes, and we had another long appointment at MDAnderson with a different surgeon.  If you have read Kimmy's blog, you might recall that there have been a couple of snafus with K's surgeon.  She was Kimmy's doctor before all this and we had never had an issue.  But, a couple of things have happened, at least one of which could have turned out badly.  To make a long story short, we decided to talk to someone else and we met with Dr. Mark Demers Friday last.  This happens to be the same doctor that our brother in law called when we first found out K had cancer.  Both of these doctors are in Orlando Surgical Group, and they allow second opinions within (or without) their practice.  OSG is also the preferred surgical group for MD Anderson.  Dr. Demers, for example, trained in Texas at the MD Anderson IBC Center.

So, back to the Friday appointment.  I'm making you read to the end to get the good news.  We spent over an hour with Dr. Demers and talked through the options (there were one or two) and the sequence and timing of everything.  We both liked him and Kimberly decided that he will handle her surgery.  Although a lumpectomy is not an option, Kimberly did get to decide whether to keep one or have both breasts removed.  We debated how to talk about this to all of you but, hey, we have come this far together.  Dr. Demers tells us that the difference in risk is very small, but in the end that slight risk and other considerations were enough for her to decide to go ahead with a double masectomy.  It's been a process getting to this point, and I think I understand some of the feelings Kimberly has about this.  As a person, as a woman.  A beautiful, young woman who was very healthy before all of this.  To say it has been upsetting to think about for her is quite an understatement, but I think she has largely come to terms.  For my part, it's not an issue.  I had a woman working for me for years as my office manager, who went by Shelley.  Our kids were the same age (she has two boys) and when something would come up with one of our kids she would shrug and say "hey, once your kid has a diaper blow out in the kitchen, not much else shocks you".  As a married couple, we are past this.  I love my wife, am very attracted to her, and this isn't going to change that. :)

OK.  Here we go.  So at the end of the meeting we asked about the test.  Although they have an electronic records delivery system, Dr. Demers was skeptical about it being ready, but it was.  He read it to us as he read it for the first time.  And it was clean.  It was actually better than clean.  The scan indicates not only that the cancer did not spread, but that the chemo kicked those cancer cells' collective asses!  This confirms the clinical indications from the regular exams, which also seemed to indicate the chemo was effective. We have no doubt that all the prayers aided Kimberly's positive response.  Please keep them coming.

Perspective:

Three possible outcomes:

-The cancer could have spread, but it did not.
-The cancer could have been stalemated, this is not what happened either.
-The cancer could be driven back, killed off, shrunk.  This is what happened.  Most/all of the cancer cells in the left breast are dead.  There may be some minimal activity in the left lymph nodes.

We were ecstatic and Allie (who was visiting for the night), Kimberly and I celebrated with lots of champagne. 

This does not change the surgery, it and all of the remaining treatment remains the same.  But Demers confirmed that this does change the prognosis.  It improves it.  :)  As we have said, the danger is in the possible spreading.  It makes sense that if the chemo killed the cancer cells in the breast area, it should also have killed them any where else they may be.  The battle is won, but we are still at war.  I think we passed our first test!!

Following up on yesterday's blog

Richard and I went to MD Anderson today and spoke with my lead oncologist. Between her and her wonderful nurse (who spent a good deal of time with me on the phone yesterday) we now have a clear understanding of the issues involving reconstruction--and me.

Generally speaking, if a woman had breast cancer of the "normal" variety, ie not aggressive, and not metastasized, then when surgery took place, that patient would have the option to get "expanders" to stretch her skin to allow for implants later down the road. If the patient was going to have to face chemo and/or radiation after surgery (as most do--surgery, chemo, radiation, or as in my case--chemo, surgery, radiation) she would have to wait for her skin and tissues to heal from all the procedures to have the final reconstruction, but in the meantime, her skin would be stretching. After healing, with one reconstruction surgery she could go on her merry way, checking in regularly for pet scans showing her body cancer free. Yay!

I applaud the women who get this far and by no means am I minimizing their trials. Their trials are my trials exactly, and they stink. I guess I just thought my story would end the same as what I just described. I could just keep moving down the conveyor belt, taking my medicine, waiting to reach the end of the line when I get to jump off the belt, punch out, and go grab a beer. (Or a very nice, very cold, bottle of champagne.) To go home and only come back once or twice a year for check-ups.

But I'm getting ahead of myself.

During lumpectomies, or mastectomies, the surgeons, of course, try to cut away all cancerous cells and nodes. But there is always the possibility breast cancer will return anyway, if one little malignant cell slips the hangman's noose and goes rogue. Stretchers can pose a problem in discovering these cancerous cells. The cells can hide behind the stretchers, or in some cases the stretchers cause infection, delaying treatment and allowing for cancer cells to grow.

This delay may not be critical for a "normal" acting cancer. In other words, if a woman had surgery, and opted to have stretchers, then found out she had abnormal cells, a delay in finding these cells of a short amount of time--weeks, a month, two, would probably not prove deadly. (Thank you, Lord!) If the cancer (as I understand it) doesn't make it to stage four, there is a plan of action to follow. And most breast cancers shouldn't progress to stage four that fast.

Unfortunately, IBC, the cancer I have, is fast acting.

The nurse kept calling my current diagnosis "locally advanced." And with a "locally advanced" cancer, she said, it is critical to find the new cancer cells immediately after surgery, should they recur.

Me: "Why so critical?"

Nurse: "So we can keep them in the same stage as they began."

Me: "Which is?"

Nurse: "Locally advanced."

Me: "Uh huh. What does that MEAN?!"

She kindly explained a locally advanced cancer means a metatastic cancer, already beyond the first two stages of cancer, but not yet at stage four.

I finally understood. "Locally advanced" equals stage Three a or Three b. (That's where I am now.) And today I got the last piece of the puzzle. Stage four means the initial cancer has metastasized into another part or organ in the body.

So. Putting all the pieces together. Surgery puts the body into hyper-cell-drive as it tries to heal. Hopefully, all cancer cells will be gone-daddy-gone. But if they're not, they are in hyper-cell-drive along with the rest of the body. That's where radiation comes in--to burn the little suckers out of existence.

They'll map out my radiation patterns after my surgery. If I chose to get stretchers, and one of them blocked my mammary lymph nodes where cancer cells could hide if they'd survived the chemo and the surgery, the stretcher would have to be removed. Ug.

Enough already, you say. Forget the #@!% stretcher.

I know. I am. Because...and this is the part Richie and I have decided they didn't really want to tell us, hoping to spare us....if the cancer recurs, and we don't catch it immediately, and it jumps to another part of my body which, with IBC can happen in weeks, there is no cure. Treatment, yes. Cure, no. Chemo. For the rest of my life!

Hell no.

I pray the chemo has worked, and the surgery will be successful. I pray the cancer will not recur. But that is not in my control. The position I place myself in is in my control. I will wait for all reconstruction, as advised, for as long as it takes. Should the cancer recur, something that evidently happens with IBC not infrequently, we'll find it and start this whole crazy process again, and I'll live.

Don't get me wrong. I really think we'll beat it at surgery, or at the very least during radiation. And the good news is, IBC is fast growing, so we'll know pretty soon if we've beaten it. Statistics show, if it doesn't recur in the first couple years, it's gone.

But it's a long road to normal. That's all I'm sayin'. Longer than I'd planned or expected.

I'm sure you can tell I'm a bit bummed. But I don't want to give the impression I'm staring out the window with a comatose look on my face. I'm not. I'm sick, and, thank God, I'm living in an age when there's medical advancement sufficient to tackle my illness. Don't for one second think I'm not grateful for that. And for the fact I did catch this IBC early. And that I have such a loving family and friends who treat me like I'm the most special girl in the world. I sometimes feel guilty I've got it so good. :-)

Someone recently said to me, "There's always someone who's got it worse." (She wasn't lecturing, more like expressing her opinion, and wondering if I felt that way too.) I know this might sound strange, but there are some things in this world that would break me. Really crush me. But what I'm going through now isn't one of those things. It's just life, and I feel God's presence with me every day, filling me with a belief that this is all part of the plan.

Dates to keep in mind:

Feb 3rd--PET scan

Feb 7th--FINAL CHEMO!!!

Great weekend-new uphill battle

Last weekend was "Goldie's weekend." It was a smashing success, save for the fact a few of my angels weren't able to come. On the upside, with only 7 girls sleeping over (Toots and Audra went home to their own beds) everyone had a comfy place to sleep! (At least I hope so. Three were on air mattresses. :-))

We talked and talked, laughed, watched funny music videos (have you seen the one with Justin Timberlake doing the Beyonce video? haha!), and made funny pictures (some of which are now on facebook thanks to naughty Merrilee!) We listened to music, broke bread, and stayed up waaay too late, because no one wanted the night to end. The exodus occurred mostly on Sunday, giving me instant withdrawal :-( But luckily Merrilee stayed with me Sunday night and I didn't have to say goodbye to her till Monday afternoon. Richie softened the blow by coming home from his ski trip. It's funny. Even though I was surrounded by my long lost friends from around the globe, I missed my honey so much. Over the weekend I kept chuckling to myself, picturing dressing him up as one of the angels so he could've stayed! heeheehee.

On Monday I had my 3rd to last chemo! Yay! On Tuesday I met with my surgeon, one of my team of Doctors from MD Anderson. Let me mention here, MD Anderson rocks. The people there are so accommodating and kind. And the promise they make to have a team of doctors who discuss your case weekly sure sounds good. But...in practice, not so much.

The issue on the table is reconstruction. For those of you who don't know, following a clean PET scan showing no cancer has spread in my body, I am going to have a bi-lateral mastectomy. As I understood it, at the time of surgery, the plastic surgeon will be there to close me up, placing two expanders in my chest. You see, the skin has to be stretched to accommodate the implants that will eventually replace the expanders, since so much skin will be taken during the surgery--especially in cases of Inflammatory breast cancer (IBC) where the cancer has invaded the breast skin. The expanders are slowly inflated. It has to be like this. if the skin is stretched too quickly, it dies and never comes back. (Picture Michael Jackson's nose--or the hole where his nose used to be)

OK, so surgery, expanders, then radiation then reconstruction.

Radiation lasts 6 and a half weeks. It damages the skin, delaying the final reconstruction by 6 to 9 months , and in some cases, all the way up to a year, as time is given for the skin to heal.

The way I understood it, this was protocol. Only last week, my radiologist said something about "bad outcome" of reconstruction with implants. He said tissue replacement works better in cases with IBC. Huh? First I heard about this. I kind of dismissed it, too, because, although I wouldn't mind my belly fat being moved--hell, throw it away!--I don't want muscles cut from my stomach and back to create a new pocket. Great, so now I have breasts, but no abs, and meanwhile I'm going to be dealing with rehabbing my arm where they'll take out lymph nodes--at least 12 as I understand it. Will I ever be a functional human being again?

Ok, so then I talked to my head oncologist. For the first time, she tells me her opinion. No stretchers at all till a year has gone by following radiation. Say what? Yes, she says, she doesn't want anything in me that will inhibit her ability to spot any recurrent cancer growth along my chest wall.

Yesterday, I spoke to my oncological surgeon. She rather poo-pooed the idea I should wait to have the stretchers put in. She says the expanders may actually make it easier to spot recurrent cancer.

I scratch my fuzzy head. Doc 1 says no stretchers for a year. Doc 2 says tissue replacement instead of implants. Doc 3 says implants and go ahead with the expanders at the time of mastectomy.

My thoughts? I really don't want three surgeries instead of two. If they put the stretchers in during the mastectomy, that's one less time they have to cut me open, because those expanders have to go in and do their work prior to inserting actual implants. I also don't want to wait a whole year to start looking normal to myself and to move away from this freakin business of being sick.

Still, if I have to I will. But how do I know what is best if my "team"--every one of them!--is giving me conflicting advice? I'm really upset. This is a big decision and I want to have an opinion, not just a preference.

I have made an appointment to speak to my oncologist to address this issue of the team not being in agreement on the subject of reconstruction.

I'm sorry to be so graphic. I don't really relish discussing my new and improved breasts on the web, I assure you! But I felt I should so that I could pass on what I learn. It is my hope that someone in the future who has to deal with IBC will be able to use my experience as a reference, because I couldn't find any answers on the web and I looked.

One good thing came from looking. I found a website called eraseibc.com. The site has made several videos detailing the nuances of IBC. The latest video is really good, interesting and informative. I'm posting the link below. Richard and I highly recommend viewing it for your own edification, as it may save the life of someone you know. Please pass the video on. The key to surviving this highly aggressive cancer is early detection. (By the way--I am among those who detected early)

http://vimeo.com/15550223

I'll post again after my meeting tomorrow.

Seven degrees of separation

A few years ago, I was introduced to the notion of "seven degrees of separation" by a couple of my very good friends (Michelle and Shawn). Since then, I've heard different variations on this--five degrees, etc. The basic premise is that, at any given time, all people are separated from knowing each other by more or less seven people.

Why am I bringing this up? Rambling thoughts. :-)

Seriously, though, it came to my mind because of a little lunch date I had yesterday, set up by my very good friend Kim Bignon. She is a wonderful, positive, energetic, person, who is friends with tons of people, I suspect because she never met a person who didn't love her, probably because she is also one of those people who knows how to be a really good friend.

She told me at the start of my cancer trials about her friend, Punky, who had, and beat, breast cancer. Punky made a bunch of shirts that read, "More than a Conquerer," and have the pink ribbon emblazoned on the back. She found out Kim B had not one, but three friends in Orlando fighting the good fight, and she sent us all a shirt.

Yesterday, Kim B gathered me, and the two other gals who got Punky's shirt together for lunch. date she named "Bosom Buddies."

My new Bosom Buddies are Amy, a beautiful wife and mother of three, currently with a head of curly black hair and one year cancer free, and Shari, also a wife and mother of two. She's had her surgery, and just finished chemo. Next she'll begin radiation. She and I both showed our heads briefly, and we both have a layer of fuzz, akin to a tennis ball or a baby chick, depending on your level of creativity!

Lord, I hope she won't mind my sharing this, but she got a little troubling news right before lunch. I don't know the exact details, only that a few abnormal cells were found on her breast (again, this is post surgery and chemo) and now she must go in for an MRI. Ever since I heard this, she has been on my heart. Prayer warriors who have been so good to me, I humbly place at your feet this request: Please stop what you're doing right now, stop reading, and say a prayer for complete healing for Shari and continued good health for Amy.

Thank you for doing that.

OK, so the degrees of separation thing. From the thoughts of my new bosom buddies sprang thoughts of just how many people are, or have been, affected by cancer. (forgive me if some of the names are unfamiliar to you, just know that if you don't know them, it's only by a separation of one person--me!) My mom, my grand mom, Danna (way in the past, thank God, and not breast), Aimee Nocero-Lewis's mom. Kimmy, a lovely accountant n Richard's office, just learned her brother-in-law, a recent emmigre into the country has brain cancer and approximately two years to live. Dr. Hunter, Northland's head pastor, recently lost his grand daughter to cancer. My mom's boss's wife, Sarah, is fighting cancer, and her boss, Mike, already beat melanoma (I think that's what he had) and my OAD also fought this. Paul lost his mother to lung cancer. Becca lost grandma Faye. Pam's partner's husband has leukemia.

Sorry this is such a loosey-goosey blog. I'm just feeling like I want to get the whole world together, like in the old Coke commercial, to hold hands and sing to the heavens for a cure for this disease, and for comfort for those the disease ravages in its wake (spouses, children, friends).

Jeese. In this world, you never know what's next. You never know who will get sick, who will get run over (Kim B!!!), or whatever else may separate us. A lot of times people think about their bucket lists. What they want to do before they die. I'm asking you to think about what you want to do with others before they die. I'm not trying to be maudlin! I swear I have a point! :-) I'm saying live you life normally, yes. Go to work. Go to the gym. Read a book, take vacation, garden. Just make sure in the midst of it all you find time to love the ones you're with. I'm convinced that memories of not being good to your loved ones, or even strangers, is a way worse regret to have than never having jumped from an airplane or seen the Taj Mahal (sp?) or made a million bucks, or blah blah blah.

I'm also convinced no one ever regretted loving well. I hope I never forget this lesson. I hope you don't mind my mental cogitation on the subject (then again, if you did, you probably stopped reading long before now :-)) That said, allow me to say just one thing more concerning love. Go for it!

Today was the 8th of 12 taxol treatments and we also met with Dr. Shah.  Her impression remains that Kimberly is responding well to the treatments. We had lots of questions today about side effects and also the path ahead.  K is having a lot of itching, fatigue and a bit of clumsiness.  No, she wasn't already clumsy!  The taxol or pre-meds are notorious for all of this but none is fun.  The itching causes restless leg and sometimes keeps K up at night.  Last treatment they increased the benedryl pre-med, which is given to reduce/prevent allergic reaction to the taxol, to reduce the itching.  After talking with Dr. Shah today, we agreed the benedryl may in part be the cause of the itching and not the cure so they went back to the regular dose and added adavan.  With so many issues, treatments, drugs, side effects and doctors, it is essential that we constantly communicate thoroughly about everything.  

We learned some interesting things today.  We talk regularly about certain symptoms (numb/tingling fingers, clumsiness beyond occasional stuff) that can indicate that the taxol is reaching a toxic level in your body.  They want it high enough to kill the cancer but not high enough to damage your nervous system.  If you show signs of toxicity, they reduce your dosage or delay treatment.  Of course, I would think most people would not want either of these to happen; you want the drug working, doing it's job killing cancer cells.  Turns out that studies show that if you become toxic, a lessor dosage works the same for you as the higher dosage does on someone else.  I guess if you are less tolerant of the taxol, so is the cancer.

We are getting a better understanding of what is coming and the order of things.  We will be scheduling a PET scan that will be done just before the last taxol treatment.  The PET scan, which requires that they inject a tracer, creates a 3D image of the body that allows doctors to identify cancer cells.  Kimberly had one at the start of all of this to confirm the cancer had not spread.  Now the test is to confirm the clinical opinion that the cancer presence has been reduced.

We discussed surgery, radiation and reconstruction.  We have 4 weekly treatments to go and a PET scan concurrently.  3-4 weeks after the last taxol treatment K will have surgery.  3-4 weeks after surgery, she will start daily radiation treatments that last 6.5 weeks.  Reconstruction won't be possible until well down the road, perhaps a year after surgery.

It's not easy, but K is doing well.  Dr. Shah is also very positive and she always stays until we have no more questions.  I think lately we leave feeling a bit better.

It's hard to watch someone you love go through this.  I've been dragging my behind through the days the last few weeks.  Just worn out.  And who was there to pick me up?  My wonderful wife.  :)