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.