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!