Tuesday, November 30, 2010

You Glow Girl, Boom Boom Pow

Sometimes you just have to say enough is enough.  This happens often in Cancerland.  Even with all these well intentioned medical professionals focused on getting the job done, killing the cancer in my body.  They are often so focused, on one particular area, it's easy for them to lose track of the rest of me.

Hello, I'm up here, look up and away from my boobies, yes, that's it, here I am.  Now listen...

Sometimes you have to raise your hand and let them know how all of this is working for you, and when it isn't.  There are so many ways to go about your treatment, and you need to be right in there, giving input every step of the way.

Sometimes I hesitate, especially when starting a new treatment.  I listen intently to their outline of how everything will go, but when it starts going another way, I think "Is this right?"   I have often raised my hand to say "This is really hurting" or "This is very uncomfortable" or "Can you help make this easier on me?  Here's what my issues are."  This is one of the things I've gotten much better at since my diagnosis.  It is not always easy to do, and requires practice if you've been the kind of person I am.  I'm usually concerned about making things better FOR OTHER PEOPLE, not myself.

I can't stress enough how important it is to be your own best advocate.  Raise your hand.  Speak up.  Ask questions.  Make suggestions.  Nobody can look after you better than you.  There is absolutely no reason to needlessly suffer if treatment will allow small adjustments be made, but you have to speak up.  I have encountered this throughout my treatment.  I shouldn't have been surprised when it happened again starting radiation, but I was!

I was foolishly thinking now I'm finally to the easy part and things will go smoothly and I can relax a bit and surf.  Not!  I got home last night so cranky, and woke up this morning with such apprehension, I thought I was going to have a panic attack.  I haven't had one of those in years.  I used to get them over twenty years ago when I was commuting to San Francisco on public transit, namely a charter bus company taking riders from Marin, across the Golden Gate Bridge, and into the Financial District.  When the bus was full and I'd have to sit at the back or crammed in, I'd feel very claustrophobic and I finally had to find another way to work.

Here I was this morning, laying in my bed, shocked thinking "I feel a panic attack revving up.  What the fudge?"

It all started last week with my CT scan and tattoos in preparation for radiation.  If you remember I was there three hours while they tried to figure out how to best position my breast to receive treatment.  I really had them stumped.  As I've said, they either usually see a skin sparing with implants, or a complete mastectomy.  Treating those is routine for them, and much easier to position.

My breast has been a real challenge and they've said so and I've seen it.  The goal is to make sure I get the dosage I need, only in the areas I need it.  They want the field of radiation as tight and concise as it can be.  It took them several hours of positioning and repositioning, and I left so sore and tired, and still not sure if the goal had been accomplished.  My scars under each breast are still healing and very tender, so is the inside of my breasts and the left arm.  All the roughing up has been very difficult.

Yesterday was my first day of treatment.  I was there another two hours.  Almost a repeat of last week, but even more uncomfortable on the tray.  The back of my head and neck really hurt, my feet hurt, my boobs hurt and my left shoulder was so tight and painful.  I was so uncomfortable during the procedure, frustrated by all the attempts and failures to get my boob to behave, by the time I started treatment I was past the limits of my patience and discomfort.  Unfortunately, they were also running behind so that added to the mix.

By the time I got home after 6 pm, I was so cranky and frustrated I could spit and cry.  The boys knew as soon as I walked in the door.  Mama ain't usually cranky.  Mama is usually cheerful, funny, and demonstrative.  When Mama walks in the door barking?  Save yourself Man!  Get out of the way!  Take cover!  The men in this house dive behind couches, hide in cupboards, and roll themselves up in rugs.

Ok, not that bad.  Maybe.  Wanna know sumpthin that drives me nuts?  When 98% of the time you are easy and pleasant to be around, and then you have the occasional 2% all fired up, you ever notice how a huge deal is made out of it?  People are so used to you smiling and making them feel good, that when you aren't all chipper, they get all crazy like you threw 'em a curve ball.

Now if Dad is cranky, the boys don't make a huge deal of it.  Oh, Dad is cranky.  Saying it is redundant.  If Mom is cranky?  They get their feelings all hurt and they are like "...but Mama, why you so cranky?  Mama?  You can't get angry or frustrated cause you are Mama!"

I explained to Husband about what happened at treatment, and of course, he got all fired up, not being there to protect and fix and serve.  I know your intention Husband, but when you start barking back at me cause you can't stand what I'm going through, it doesn't help.

I woke up this morning knowing I had to speak up in a big way.  I couldn't have every damn day before radiation feeling apprehensive and anxious.  When I arrived for treatment today, I told them I'd like to speak with Dr. Lotus.  She wasn't in yesterday.  We had not spoken since my appointment last week.

When I went into the radiation room, I explained to the techs about the discomfort I had the day before laying on the tray.  First of all, it is absolutely ridiculous how uncomfortable that thing is, and laying a sheet over it doesn't do a damn thing.  I placed my order.

I need more cushioning under my head and support of my left shoulder.  I need to be able to rest my arm if they are going to take a long time positioning me.  I need support under my knees and under my feet, and yes, all the warm blankets you can put on me.  That ace bandage you've strapped me to the table with is so damn tight across my breasts, I need something between it and my skin. [Yes, only Flopsy is getting treatment, but poor old Mopsy is right in there with her restrained.]

When you've never done this and you don't know what to expect or what accommodations can be made for you, you just lay there and take it.  That's what I did yesterday, and on the CT scan day, and I wasn't going to do it anymore.

I realize now, every step throughout my cancer treatment, is a human process, human error happens.  It should also be an organic process, there are ways to do things better.  Why not start with me?

The staff was very understanding and made notes on my setup after we got it together.  Today I was positioned and relatively comfortable, and done with treatment in less than thirty minutes.  Big diff from CT scan day, over three hours.  Yesterday's treatment?  Over two hours.  Both of those times with far more pain and discomfort than today, and that's because I took care of me.

When I finished, they took me into an exam room, and Dr. Lotus came right in.  I told her I had asked to speak with her today regarding some things that were of concern to me.

First, the length of my first two treatments, and all of my discomfort.  I explained to her I took care of several of the issues myself today, telling the techs what I needed.  She said that is good and expected, and the first few treatments are always the hardest, but especially in my case.  She was confident we would get into a comfortable rhythm soon, but welcomed any suggestions I might have.

The calendar of treatment I was given was significantly longer than what she and I had discussed.  I thought I was supposed to be done the first week of January, and the treatment schedule showed completion January 17.  She explained that after considering my case and discussing it with a colleague, I will have the 28 treatments we discussed, but I may need what are called boosts.  This could take me up to 33 treatments, the five additional would be boosts.  The boosts are where they target a specific area they are concerned about and radiate it a few more times.

I have an area in the outer quadrant of my breast, heading towards my armpit, that had "close margins."  That means when my surgeon, The Wizard, removed the cancer in my breast, he tried to get a safe margin between cancerous tissue and non-cancerous.  In my case, I had an area where the "positive" margin, or area with cancer, was less than 1mm from the skin.  This is the area they want to give a boost to.  It's fairly close to my remaining lymph nodes and they don't want anything else spreading over there.

Dr. Lotus explained my skin may not tolerate the length of that treatment.  I may get so red, sunburned, raw, or have open flesh that they would have to stop treatment.  She explained that even if we have to stop for those reasons, I will still have received what I needed.  It is as if the skin tells you when maximum dosage has been achieved.

The last item I wanted to discuss with her is my concern about being their "guinea pig."  Was she confident that my breast was being positioned in such a way that I would receive effective treatment?  Is there a margin for error that I should be concerned about?  What I mean is, the positioning of this breast is like something out of the game Mousetrap, and I really don't see how it will be exactly duplicated each time.  They have basically rigged a contraption using bubble wrap and tape and ace bandage but it is very crude.

I told her I felt as though I was getting state of the art, Star Wars technology, but the way my breast was rigged was like a MacGyver show.  The two together really had me concerned.

At that point, Dr. Lotus pulled out my binder (not a chart now, a binder) and showed me on my CT scan where they need to radiate, what they were trying to avoid, and that small changes in how my breast is positioned would not effect me receiving the dosage, because the breast is still within the radiation field.  What it could affect though?  How my skin does.  Skin on skin during radiation is a real problem.  I have lots of wrinkles and folds in my breast and a good part of their efforts are to get what's left of Flopsy as flat as possible.

Dr. Lotus explained that we may still need to do some tweaking, but things will go much quicker now, and I should continue to speak up to help the techs with my comfort.  I felt so much better after today.  So much better.

Add this to your manual on Cancerland.  Don't ever count on things going like they say it will, or what the Internet describes.  Glitches are the norm, discomfort is too but can sometimes be helped with small fixes.  You have to look out for you, and don't hesitate to speak up if you think something can be done better, easier, or less intrusive.

And for gosh sakes, if you need radiation, make that tray you'll have to lay on as comfortable as you possibly can, cause you'll be on it, days and days in a row, weeks on end, having to lay in awkward positions, hardly breathing!

A little radiation trivia for you.  Did you know the door to the radiation vault weighs 4,500 pounds and all the walls of the room are solid cement?  They are working awful hard to keep that stuff in, the same stuff they are shooting right in to me.  Yikes.

Glow Girl.  Beam On!

Gee, did I scare y'all with Glow Girl's mission?  Poor Mft is worried about her Hubby when they come to visit.  Even my brother Ronald was a little worried about the fallout from the bad pee pee's hitting the good ones.  He wanted to be assured I am accurate with my targets.  He's seen me throw a ball and bowl.  Midge's comment was the cutest when she said "How's it glowin?"

Don't you good citizens worry.

How much damage could a 5'2" spiky blond coming off five months chemo, boob mutilation and hormone annihilation do when she's powered up with enough radiation they usually like behind a 4,500 pound door?

I like that boom boom pow
Them chickens jackin my style
They try copy my swagger
I'm on that next shit now

I'm so 3008
You so 2000 and late
I got that boom boom boom
That future boom boom boom
Let me get it now.

http://www.youtube.com/watch?v=4m48GqaOz90


  

Monday, November 29, 2010

Glow Girl, Beam On

That's what the sign says in the vault, when you are laying on the tray and the lasers make geometric shapes across the top of your naked chest.

Beam on.

The sign looks like an APPLAUSE SIGN and flashes like one too.

Chemo girl made the solitary journey to and through the Kingdom of the Lost Breasts, and now it's official.

I have taken my super hero oath to protect and serve.

I've been radiated.

Glow Girl.

Beam on.

Power up.

Sunday, November 28, 2010

Glow Girl, My Best One Yet

My blond brain is making the shift, absorbing I really am getting close to finishing my cancer treatment.  I remember when I was first diagnosed, and The Good Witch said I'd need five months of chemo.  Gulp.  I couldn't comprehend that.  What are you talking about Lady?  Five months?  Are you kidding me?  I always thought chemo was something you did for a few weeks, made you sick and your hair falls out.  And then you bounce right back!

As difficult as going through chemo was, it's the uncertainty of the collateral damage that can really get to me sometimes.  It's anybody's best guess when my neuropathy will go away.

I remember when The Good Witch said between chemo, my surgery, radiation and reconstruction, I could pretty much count on cancer filling my calendar the next year of my life.  That was incomprehensible, how would I ever do that, and now look at me, 203 blog posts and seven months in.

During chemo, I never thought it would be over.  Especially that last month, when I stopped working and the effects of Taxol hit hard.  Even after chemo was over, it took my brain and body a few weeks to absorb that I really was done.  I did it.  I did it.

Shortly after my surgery and in the weeks to follow, I thought the pain would never let up, and how would I ever get through this too?  It took almost a month, but I am doing significantly better.

I am on the threshold of starting radiation, only a day or two left a radiation virgin and mild mannered Mother of two.  Ok, I concede the mild mannered part.  I don't have the same apprehension and anxiety about it as I did the other stages of treatment.

I've even imagined myself as a Superhero, Glow Girl, and I fly around the universe, all radioactive and menopausal and mad as hell my fat bunnies have been flattened like a panini.  My mission?  To save the world by seeking evil penises around the globe, and all I have to do is glare my glowing estrogen deficient kiss my grits laser glare at them, and the aforementioned evil penises fall off, a heap of nuclear dust.

I might occasionally have to use my laser on people who say stupid things to us breast cancer alumni like "Keep your chin up" or "My cousin had breast cancer.  She died."

Somebody should make a Cancer Vixen turned Glow Girl movie for all us brave Sisters of the Cancerous Breasts.

Midge's fiance, 6C, is a Disney animator.  Hey 6C, hey baby, will you work on that story board for me?

Wait a minute, I have to stop, I am killing myself here.  Let me just be Glow Girl a few minutes more, k?

I'm back.  I know radiation will have its challenges, but I've already leap frogged that worry so I can worry about AFTER treatment.  [Is frogged a word?]

All those months I felt as if I was in this protective bubble, and inside that little world, the primary focus has been moi and decimating the cancer in my body.  I've had such great care on so many levels, from my oncologist and surgeon to my chemo nurses and hospital nurses, and who could forget my Vonda or my Lab Lady.  Not to mention, ALL OF YOU!!!!!  It has recently occurred to me that this huge huge team will be setting me free soon.  It's scary.  All these months I've felt like one of those Verizon commercials, you know, where the person is on their Verizon phone, and like 200 people appear out of nowhere to support their service.

It won't be long before my elite team will go about their jobs helping other cancer people, and I'll be let loose back into the world again.  Without them.  As hard as treatment has been, it has been very comforting to have all this commotion around me, all this effort on my behalf.  Soon enough I will be out of the bubble, and have to face my new normal.

One of the recurring thoughts that troubles me is this.  If they don't know what caused my cancer in the first place, how will I keep it from coming back?  I've been thinking about this a lot.  I don't see The Good Witch or The Wizard until after radiation is complete, and I am already feeling a little lost without them guarding over me.

I didn't spend much time thinking about this for months now, I was too focused on completing my treatment.  Now that treatment is winding down, I find myself thinking about it more and more.  How did this happen?  I always thought I had a very strong immune system, rarely sick except when the kids were little, and we'd pass colds around this house like candy.  How did this happen?  How and why did this happen to me?  If I don't know the answer to that, how will I keep it from coming back?

I've been doing my radiation homework, and looking at some of the new studies on its long term affect on recurrence.  It's a good news, worrisome news thing.  I've read several times that radiation in the first two years after treatment, cuts the risk of recurrence up to 70%.  In years 2-10, that percentage starts to go down, and by the time you reach year 15 after treatment, the recurrence statistics are fairly even between those who received radiation and those who didn't.

http://www.webmd.com/breast-cancer/news/20101101/radiation-cuts-risk-of-breast-cancer-return?ecd=wnl_brc_112310

Radiation seems to have the highest effect in the early years after treatment.  Long term?  Not so much.

I have so many questions for The Good Witch when we do meet in January.  We will be talking about treatments to completely shut down my hormones; if you remember, my cancer is hormone positive, meaning estrogen provides fuel for the growth of cancer cells.  Although chemo stopped my periods, I will still need to shut the factory down completely, and there are a few ways to do it.  Most of the time, drugs are prescribed.  In particular, a drug named Tamoxifen, and I'd have to be on it for five years.

I'm more than a little scared when I read the posts of my Sisters on the cancer message boards, who have nicknamed this drug "the devil pill."  Many have suffered very severe and exaggerated menopause symptoms, including insomnia, hot flashes, nausea, vomiting, extreme mood swings, muscle/joint pain and onset of arthritis.  This is one of those lesser of two evils things, h-m-m-m-m, let's see, Menopausal Mermaid from Hell or Back to Cancerland... Do you feel lucky punk?

I know we will also discuss how I will be monitored from here on out.  From what I understand I won't be having mammograms anymore.  Not sure how they will monitor me, but I guess I'll find out.

For the first time in all these months, I see the end of treatment in sight.  I'm going to do my best to celebrate that, and not spend a whole lot of time worrying about the next set of problems and decisions.  Not an easy task for an over thinking, let's get her done girl, like me.

When I felt my top starting to spin, I had a talk with self.  Self? I said.  Settle down.  This is what you need to focus on right now.

Complete radiation treatment.  Check.
Get this house ready for Christmas.  Check.
Move your body.  Check.
Enjoy the holidays.  Check.

New Year's Eve will sure have a whole nuther level to it this year, celebrating the completion of 8 months of cancer treatment, and kicking 2010's ass out the door.

Go on, get out of here, git, scram, hit the road Jack.

and don't you come back no more...

Cause if you do, Glow Girl will be waiting for you, with a big can chock full o' radioactive whoop ass.

Saturday, November 27, 2010

Giving and Moving Towards Progress

I have been doing more and more with my arms, and I am very happy to tell you, completely off the Dilaudid.  I am very proud of that cause I can tell you, I see now how people can get addicted to pain killers.  I once read that when you are on them, your body keeps up the cycle of pain in order to keep getting the drug and baby, I believe that.  I occasionally take some ibuprofen if I need it, but have been working to stretch and move when my body tightens up or I'm in pain.

I am finding it easier to dress, easier to stretch out my left wing, and also push my shoulders down and back to loosen them up.  My right side still has some tenderness in that shoulder, but it is significantly better.  My left side still gets very tight and prickly, but massaging it, moving it, and stretching all really help.

I think the most significant change that kicked my healing into action was when I started getting more sleep.  It has been astounding to me the difference - with my pain, my attitude and generally how I feel.

For awhile my scars were still looking very angry, but since I started sleeping more, they are calming down and not pulling or burning as much. 

I really underestimated how sleep affects healing and attitude, and I am only sorry I didn't raise my hand sooner to get help for it.  I can't emphasize enough how important sleep and pooping are!  Really, I'm not kidding.  I feel as if my body systems are rebounding with small slow continuous progress, but PROGRESS!!!

Wheeeeeeeeeeeeee!

I was surfing the Internet today, looking for local volunteer opportunities, and more upper body exercises.  I found both.

I did not realize the County I live in has its own volunteer website, and you can look through all the postings for organizations seeking volunteers.  I found three that really excited me.  One is for an assistant to the Hospital Chaplain, where you visit patients, pray with them, and/or facilitate a visit from someone of their particular religion.  The other was for a Toddler Story Time program at my local library, where you read stories to the wee ones.  The last was for a helper with Pet Therapy, where service animals are taken into the hospital and nursing homes and the patients can pet them and enjoy their company.  I am very excited about this, and will keep you posted.

I am a working dog, and when I ain't working, I am not fulfilling my purpose.  I can't wait to have somewhere to go a few hours each week.  PLEASE FEET COOPERATE WITH ME!

I also found a great little article on WebMD with exercises for after breast surgery.  Each exercise is explained, and an animated stick figure illustrates.  These exercises are very simple, and I did them all today and really loosened up my upper body and neck.

http://www.webmd.com/breast-cancer/healthtool-post-breast-surgery-exercises

My favorites is the Hand Clap, so simple!  You do a jumping jack without the jumping, simply raising your hands above your head into a clap, and then down again.

This is a bonus move, as it gets the chi flowing in the room, and energizes you.  Give it a try, it really works, even if you haven't had breast surgery.

There was a hostess I used to work with, and whenever she worked, she always did this routine.  Every evening just prior to the dinner shift, she'd walk out into the dining room, rub her hands together and then clap several times, to get the positive energy flowing in the dining room.  I always got a kick out of that, and I don't know about the dining room, but it got my juices flowing.  Thank you Judy.

I had some good chi going today, thinking about the volunteer opportunities, and moving and stretching my body.

I looked awful cute today too, or so I thought, after getting dressed, putting some makeup on, and brushing my eyebrows!  I am noticing small changes in my skin and glow, and less puffiness in my face.  I saw a glimpse of me in the mirror today, and it felt really good.

Real good.

Hello Baby.  Good is on its way.  Good is on its way.  Give.  Move.  Love.  Good is on its way.

Friday, November 26, 2010

Radiation 101

Monday is the start of the last phase of my breast cancer treatment.  Radiation therapy.  Here's how it works.

Radiation therapy for breast cancer uses high-powered X-rays to kill cancer cells. Rapidly growing cells, such as cancer cells, are more susceptible to the effects of radiation therapy than are normal cells.   MayoClinic.com

“Cancer cell growth is unwieldy and uncontrolled—these cells just don't have their act together like normal cells do. When normal cells are damaged by radiation, they are like a big city with a fire and police department and trained emergency squads to come and 'put out the fire.' Damaged cancer cells are more like a disorganized mob with a bucket. ”  Marisa Weiss M.D., BreastCancer.org 


When receiving radiation therapy for breast cancer, the patient may either receive external or internal radiation.

■External radiation. External beam radiation, the standard type of radiation therapy, delivers radiation in the form of high-powered energy beams, such as X-rays, to your entire breast from a machine outside your body. This is the most common type of radiation therapy used for breast cancer.

■Internal radiation. Internal radiation, or brachytherapy, involves placing small radioactive devices in your breast near the tumor site to deliver radiation to affected breast tissue. Internal radiation may be used as an extra radiation boost after external radiation or for small, contained tumors.

Radiation therapy may be used to treat breast cancer at almost every stage. It's an effective way to reduce your risk of breast cancer coming back (recurring) after surgery. It can also help control the spread of breast cancer and offer pain relief for advanced breast cancer.   MayoClinic.com

I will be having external radiation, and Monday will be my simulation.  It's how they always prepare for the real deal.

My radiation team consists of the following medical professionals:  my radiation oncologist, Dr. Lotus, who specializes in the treatment of cancer patients using radiation therapy; the dosimetrist, who helps the radiation oncologist plan the dosage and field of radiation; the radiation technician, who operates the machine that delivers the radiation; and the radiation nurse, who will help position me and make it as comfortable as possible during treatment.  It's very important I do not move at all during radiation.

Receiving radiation in itself is pain free, but it does have some frequent side effects.  The most common is fatigue, usually starting a week or two after the start of treatment, and getting worse as treatment goes on.  Some people also experience skin sensitivity, the skin can turn pink or red or tan, and in the case of breast cancer patients, breast swelling.

Radiation therapy can often cause permanent hair loss at the site.

Do you think I could get them to do my upper lip?  Will this mean I won't have to shave under my left arm?

Radiation is delivered in short doses, usually about 20 minutes long, over 2 to 10 weeks.  I will be going for five weeks, 28 sessions.

So there you have it.  The most important thing for you to know about radiation treatment for breast cancer?

It can reduce the risk of recurrence up to 70%.

Light me up baby.

Thursday, November 25, 2010

Happy Thanksgiving

There is something so satisfying about tradition, satisfying and comforting.  I was immersed in it today.  With all the radical change and uncertainty in my life these last months, what a relief to find the same old same old.

I love how the house smells, the way it smells every Thanksgiving.
I love how the food tastes, extra delicious, and we say that every year.
I love watching the Macy's parade, reconnecting with my childhood.
I love the chopping and the baking, the sifting of flour, and the melting of butter.
I love throwing that turkey around and stuffing it beyond reason.
I love getting the china and crystal out of the hutch, and I feel my Grandmother's hands, and my Mother's hands on mine, as I set a lovely table.
I love watching the faces of my family as they take that first bite, and devour their favorites on the plate.

As good as the food, as great as the smells, and powerful the memories, every year my favorite part is always the same.

It's when we stand at the table, holding hands, and make what feels like an unbreakable chain.  We close our eyes, we say a simple prayer of gratitude.

We are a family.  We go on.

I am so blessed and grateful today.  I don't want to leave it here, when the food is put away, and the china is put back in the hutch, and we go about our lives.  I don't want to leave it here.

What if I could live my life by taking my gratefulness to its fullest expression?

What if I could risk giving more than I ever thought I could?

Starting now.

If you help others you will be helped, perhaps tomorrow, perhaps in one hundred years, but you will be helped.  Nature must pay the debt... It is a mathematical law and all life is mathematics.  Gurdjieff

Do the math baby, I say to myself.

Give.

More than you ever thought you could.

Starting now.

Wednesday, November 24, 2010

Gratitude and The Smallest Angel

We have traditions at our Thanksgiving table, as all families do.  We drink Martinelli's sparkling cider, and make pumpkin bread from my Mom's recipe, and fill our plates with roasted turkey and mashed potatoes, yams with marshmallows, and Grandma Ginny's creamed corn.  We always start dinner by having each person at the table say what they are thankful for.

My cornucopia overflows this year.

I am abundantly grateful and humbled and breathless for the outpouring of love and support that has come to me during the biggest challenge of my life, for my life.

Angels have arrived all along this path to love me, make me laugh, kick my ass, hug me, heal me, and carry me.  I've received cards and handwritten letters, presents and comments on my blog, hugs in the grocery store, and text messages late at night reminding me I am missed at work.

There were moments over these last months that were harder tests than I have ever faced, but not as many as the moments where my spirit soared in the assurance of God's love for me, and yours too.

As I do every year in this season of my birthday then Thanksgiving, I reflect on what I am grateful for.  This year, my thoughts replay going to the high school for the Relay for Life evening ceremonies, to see the lighting of the luminaries for those facing cancer, or in memory of those we lost.  It was amazing and humbling, inspiring and comforting, peaceful and sad, to walk the track and see all the flickering lights, including the ones for me and my Mom, side by side.



I've been thinking a lot about the luminary of that three year old little boy I told you about in my blog post about the Relay.

It made me cry to see my luminary and my mom's lit up, but there was one luminary out of the hundreds that stopped me in my tracks.

It was in memory of an adorable little boy. On his decorated luminary was a photo of his shining sweet face, his name, and 2002-2005 written underneath.

He was only three.

He was only three.

Only three when cancer took his life.  The Smallest Angel now.

I am thinking about him tonight, and his family who I do not know.  I do know they miss him, each and every day, and a whole lot more during the holidays.

There have been moments when I thought I could not go any farther, could not do anymore, could not muster another ounce of bravery or hopefulness.  In that darkness, his sweet little face came to me like the striking of a match.  For a moment, because of him, I imagined my family walking the track for me, missing me every day, and a whole lot more during the holidays.

Of all the people and love and moments I am so grateful for on this night before Thanksgiving, I am most grateful to the Smallest Angel I found that night last summer, four months into chemo.

Thank you Precious Boy for your gifts to a stranger, reminding me life is fragile, every day is a gift, and how heartbroken those who love me would be if cancer stole my life from me.

I will make it a mission to find out your name, and send a letter to your Mama and family, to let them know in addition to all you were, you are still a light on my path.

Thank you Boy.  Your adorable face has been a recurring vision and reminder to love my life, and be deeply grateful every morning I wake up and get another chance to love and be loved.

I hope this message is delivered to you in heaven.  I will make sure your Mama hears it on earth.

Thank you, each and everyone, for all you have done to replenish the starlight in my pocket, and whisper "Keep going, we love you" when I thought I could do no more.

Thank you.

Wishing you a blessed Thanksgiving.

 

Tuesday, November 23, 2010

Three's a Charm

I have started the preparation for the 3rd phase of my breast cancer treatment.

Five months of neoadjuvant chemo.  Check.

Bilateral mastectomy with partial axillary lymph node dissection.  Check.

5 1/2 weeks radiation.  Here we go kids.  Let's hope three's a charm to once and for all kick that bitch into a galaxy far far away.

I talked to Midge on the speakerphone while finishing up getting ready today for my appointment at the Cancer Center.  I was scheduled to receive a CT scan in order to plot where I'd be receiving the radiation, and have my radiation tattoos done.

I don't think Husband could have ever imagined that the future would deliver to him a wife with a Dennis the Menace cowlick on top of a short spiky head, scooped out deflated boobs, and tattoos.  Who'd a thunk it?

Sure was exciting this morning to brush my eyebrows.  They are almost completely back, and next week I think I'll go get them shaped up!  That is exciting.  My eyelashes are still tiny spiky things, but coming back as well.

The bad news?  The hair above my lip is coming in dark and feels coarse.  Oy vay.  Hormone thang I guess.  Don't even tell me I'll get through this whole thing, new boobs and body, only to have a mustache like Tom Selleck.

As I drove down the hill from my house, I passed the Marina, where my lab is located.  I thought about my lab lady and wanted to stop and say hi, but was running a little late.  I miss seeing her smile and getting her hugs, but not the pokes!  I don't think it was any coincidence she must have received the vibe, sending me a birthday wish from last night's post!  Hello Terry.  XOXO.  I think of you often!  You are part of my Angel network.

It was strange going in to the Cancer Center, checking in at a different desk, the Radiology section.  It wasn't long before I was called in and prepared to see Dr. Lotus, my radiation oncologist.  She has a very simple and natural beauty about her, and I'll bet she was an incredible student.  She is very competent and thorough.

She came into the exam room and warmly greeted me, and asked me to update her on how its been going since my last visit in early September.  I explained how my neuropathy and energy level seemed like it was getting better in the two weeks prior to surgery; I was swimming and regaining strength.

I told her the surgery knocked me on my ass, and most of the last month was extremely difficult trying to manage my pain and insomnia.  In the weeks after the surgery, I felt like I'd been hit by the recycling truck that comes to our neighborhood every Monday morning, shaking the house as it passes by.

It was not until I stopped taking the Vicodin and starting taking the Dilaudid that I was finally able to start sleeping, and in these last several days, I feel like my healing is finally kicking in.

I told her with all the pain, tenderness and immobility in the left arm, I was really worried about the effects of radiation.

Dr. Lotus asked if either The Good Witch or The Wizard had reviewed my pathology report after surgery.  Given that there was still some residual cancer prior to the surgery, she wondered if The Good Witch had discussed with me the possibility of a little additional chemo.

I about fell off the exam table.

"No, no she didn't."

"When did you last see her?"

"Um, just a week ago last Friday, the 12th.  No, she never mentioned that, and said I was ready to continue to radiation and she'd see me after the first of the year, unless I needed her before then."

"Ok, great, I guess she didn't feel it necessary."

I started breathing again.

Dr. Lotus outlined how things would go from here.  Today I would receive a CT scan so she could plot my treatment, as well as my radiation tattoos.  It would take her at least a week to plan my treatment, but she'd try to get us started by next Monday, although she couldn't make any promises.

She said she was referring me to a lymphedema therapist, which is a physical therapist for patients who have had lymph nodes removed.  She said I could start right away.  I was happy about that.  I'm worried about the lymphedema.  I know it's a condition that once it gets started can cause a lot of problems with swelling, pain and numbness in my arm.  I would probably go to the therapist a couple of times a week for three weeks or so, and as part of that, would learn lots of exercises and care for my left arm.

"I'd like to examine you now, so I'll step outside while you change into your exam gown" and she left the room.   I took off my hoodie, shirt and scarf.  I've been wearing my scarves around my neck lately, no longer wrapping my head in them.  My hair is coming in cute.  Still very very short.  I had the boys laughing the other day cause I have these tiny wisps of hair at the nape of my neck, and I showed the boys and said "Look guys, I almost have a pony tail."  "Right Mama."

Dr. Lotus came back into the room and examined me, lifting up each breast to look underneath.  She had me lay back on the exam table, and raise my arms above my head.  She poked and moved and examined my right arm.  Very little tenderness there.  She did the same for the left, and could tell it is tighter with significantly more discomfort there.

Dr. Lotus seemed pensive as she examined what was left of my breasts.  "I have not radiated a patient with a skin sparing that either was not already reconstructed or had tissue expanders in.  I'd like to consult with a  colleague of mine at MD Anderson who has a lot of experience with this, and have him concur on the treatment plan for you.  I'm hoping we can get this all wrapped up within a week, but with the holiday and all, it may take longer."

You might remember me mentioning MD Anderson in my blog before, it's one of the top cancer treatments centers in the country, and many of the large studies involving breast cancer patients come out of there.

Dr. Lotus instructed me to keep my gown on, and gather my things, and the technician would come in and take me to the patient waiting room, and then down the hall where the CT scan would be performed.  "See you there in a minute."

The cheerful technician arrived and lead me the short walk to the patient waiting room.  It's like a large lounge with a TV, cabinet lockers, dressing rooms, and a restroom.  This is where patients scheduled for radiation wait their turn.  It was a large comfortable room, and one wall was all windows with a view out to a nice garden.  I placed my things in a cabinet, and locked it.

We headed back down the hall, I had my key, and turned into the large room with the CT scanner.  It looks like a super sized doughnut, with a large moving platform in front it.  I knew the drill.

I removed jewelry and hopped onto the table and the technician helped make me as comfortable as you can be laying on a hard metal surface that is more like a tray than a bed.  She tucked me in with warm blankets and I had to position my arms above my head and hold on to two handlebars, one in each hand.

It wasn't long before Dr. Lotus came in, opened my gown, and was lifting and moving Itsy around.  I could tell my case was a real logistical challenge for them.  After she and the technician tried to maneuver my breast around for awhile, she said she'd like to call in her colleague at the office, the dosimetrist, and have him give his opinion as well.

From what I understand at this point, the radiation is administered as a field.  The radiation oncologist and dosimetrist (as in master of the dose) do their geometry to determine the size and shape of the field, as well as the dosage.

I know I through them all for a loop today, as what normally would take about an hour to set up a patient in the perfect position for treatment took over three hours with me.  The problem?  How to get that flat boob to stand straight up, with protective materials placed all around it where they do not want the radiation to penetrate.  With a full mastectomy, the patient has a completely flat chest, and so it is very easy to lay things down on a flat surface.  With a regular breast, it can stand up more on its own and they can position things around it.  My odd shaped boob with lots of wrinkling in the skin made for a real challenge for them.

They needed to come up with a solution for positioning me in such a way that could be duplicated exactly every single time I come for treatment.  They would solve one problem then another would arise, and at one point, Dr. Lotus thought it might be better for me to go home, let them think about the puzzle so to speak, and then I'd come back tomorrow.  They tried a couple more things, and started to get somewhere.

I ended up with a concoction of bubble wrap, metal mesh, tape, and stretchable bandaging across my chest taped down to the platform I was laying on.  I looked as if I had some kind of MacGyver contraption on the left side of my chest.

Finally, after three hours of laying on that platform, most of the time with my arms over my head, they were able to arrive at a solution they were all happy with.  They photographed it and had the other technicians come in and see what they had done so that everyone would know the special arrangements for moi!

Once they got me all positioned, the technician gave me more warm blankets and wrapped me up like a papoose.  They all left the room, and I had to hold very still as I moved back and forth through the CT scanner.

It was an exhausting day for me, and my arm was stretched to its limits today.  I sure felt like a guinea pig!  It's a little scary when you are a FIRST for people, just like for my surgeon.  I was his first skin sparing that was not immediately reconstructed.  Now I was the FIRST set up like this at the Radiation Center.

The last prep for the day was my tattoos.  Dr. Lotus marked tiny dots on me; two on each side of me a few inches down from my armpit, and two on my chest.  One on the chest is directly between my boobs, the other is slightly higher and towards the left.  The technician said "Ok this is going to pinch and sting a bit.  Are you ready?"

Uh huh, I shook my head yes.  She injected the small amount of black dye into the two spots on my chest, then under the right arm.  It was quick but a sharp sting.  Then she did the one under my left arm.  Didn't feel it, still completely numb there.  I have four dots now, and officially tattooed.  They will use the dots to line me up with lasers, similar to the ones you shoot to get a straight line to hang pictures on the wall.  Made me think about my job and how we use one of those lasers to shoot a line down the banquette to make sure all the tables are in a perfect straight line.  Never thought somebody would be shooting one of those across me.

Over the next few days, Dr. Lotus will do her homework to come up with the plan for me, will consult with her colleague, and next Monday after the holiday, I will return for a simulation.  If all goes well, I will start my radiation the next day.

28 sessions, daily, Monday through Friday, taking me through the end of the year and into January.

I am in the third and final stretch of cancer treatment that started in May.  If you include my reconstruction and recovery from that, this whole process will take about 15 months.

Did you know gestation for an elephant Mama is 22 months?  She gets a big wrinkly baby out of it.

I'm hoping to lose these wrinkly babies, and birth the new me.

Cancer free.

Monday, November 22, 2010

Happy Birthday Chingobell

That's my name you know.  Chingobell.  Well, that's what my Spanish speaking busser used to call me, as in Tinkerbell.

So, Tink turns 52 today, she's middle aged now, put on a few pounds, still takes care of the lost boys, pouts occasionally, still very stubborn, and this year was diagnosed with breast cancer.

But she's still Tink.

Still Tink.

The day started good, taking my time getting out of bed.  Thinking about the Thanksgiving menu.  Husband took me to one of our favorite breakfast bistro's; I wanted Irish Benedict for my birthday breakfast.  M-m-m, so good.  I was feeling upbeat.

I asked him to take me to Penney's so I could explore bra's and see if I might find something to put these things in.  I was hopeful.  Husband dropped me off in lingerie and said he'd go keep himself busy while I dived in.

I wasn't even sure what size to look at.  Guess I should have measured or something, but decided to jump in and see what I could find.   Prior to my surgery, I've been purchasing the same size bra for years, mostly a 40DD.  I've never been to a fitting specialist, and figure I probably was one of the millions of women wearing the wrong bra size.  I know I was compensating in the width to allow more cup.  Truth be told I was probably really a 36 F or G or something crazy like that, but never felt like finding out, not wanting to know just how big those bunnies really were.

I decided not to worry about the cup size first, let's figure out the chest size.  I grabbed a 34, a 36, a 38 and a 40.  I tried all of them on.  I found the 36 or the 38 the most comfortable, depending on the cut of the bra.  I decided to start with 38's to allows myself a little extra width as I am still so sore where my drains and sutures are.

I put all those bras back.  Let me ask you something?  When you try on clothes, do you leave them in the fitting rooms or do you put them back?  I always put them back.  I'm funny that way.

I explored all the different bra's and found some I thought might work for me.  A few of the different manufacturer's had bras with a fair amount of padding in the cup, not only pushing the breasts in for cleavage, but lifting them up.  I felt inside those bra's and got very encouraged.  The padding really filled out the cup and was like a small shelf inside the bra.  Maybe Itsy and Bitsy can lay on those shelves like a chaise lounge.

I grabbed all colors and styles of 38 B, figuring this would be the closest fit.

I hung them all in the dressing room and took off my hoodie and my scarf and my butterfly T-shirt.  There I was.  In the full length mirror of the Ladies Dressing Room at JCPenney.  I took a good look.

That's when it occurred to me that maybe this was not such a good idea today.  My birthday.  Supposed to be a happy day.  Maybe this was not a good idea.

I saw me, and the full reality of the affects on my body hit me as if the self in the mirror reached out and slapped the me standing there.

Spiky little punky little blond hair, not yet long enough to be brushed or combed.  It has its own way, and you can see all the waves and parts and spirals it makes, like the sky in Van Gogh's Starry Night painting.  My face and my shoulders looked small and petite, although my upper arms are chunky and still swollen.

There's my neck.  There's my new necklace Nani gave me.  My eyes moved down my chest.  It concaves over where two breasts used to be at their fullest, as if a large crevice has been carved into it.  As you move slightly down, all the wrinkling of extra skin forms two downward triangles.  My nipples are the bottom of the point.

I think these boob renderings look like they belong to Mrs. Jumbo.  You know, Dumbo's Mama.  Well, probably when she was a teenager.  Yes.  More like that.  The skin of what is left of my scooped out breasts is very wrinkled and folds into itself, much like the skin of an elephant.  It's just that mine are rosy and pink, not leathery and gray.

I cupped my little elephant breasts, one in each hand and surveyed.

I almost cried a little cry for me.  Oh, you poor poor baby girl, you poor poor baby.  Aw baby, don't cry, try those bra's on.

I instinctively reached for the purple one.  Did the old turn it around backwards, snap the snap, adjust it back around to the front.  You Ladies know the drill.  Kinda crazy how we have to put a bra on, isn't it?

I pulled my arms through the straps and positioned them on my shoulders.  That's when I realized "These straps are so tiny.  Itsy little biddy things, not even 1/2 inch thick.  Almost like a spaghetti strap.  Why I do declare, I don't believe I've had a strap on of this nature since the summer of 1968."

So far so good.

Now for the alien breasts.  Come on now creatures, cooperate with me and get into these hovercrafts.

I tried, all kinds of ways.  First of all, my breasts are too far apart to even comfortably be coaxed into a cup.  My boobs are out here, as she points closer to armpits, and the cups are in here, pointing toward center of chest.



Still hopeful, optimistic and not very good at math I thought "Maybe it's the color that's all wrong."  I grabbed for a pink one.

Same thing.

How bout the white one?

Then it occurred to me I had already forgotten yesterday's wisdom that enlightenment happens when you don't keep doing the same thing over and over again expecting a different result.

Nothing worked.  I was still stuck with this me.  I had to get out of there.  I dressed quickly, feeling a major boo hoo coming on.  Thinking about it now, it was kind of cute in a pathetic way, me about ready to bawl and still carefully putting all those bras back.  Then I left the store, and out the mall towards the car.

I found a bench outside, put my sunglasses on and whimpered.  Another layer of this reality, YOU HAVE CANCER LADY, landed on me today like an elephant in a purple bra and pink tutu.  I felt awful sorry for myself.

I texted Husband.  "Meet me at the car."

A few minutes later he came outside and saw me on the bench, not realizing I had gone down like the Hindenburg inside JCPenney and the mall had to be evacuated.

"Did you find anything?" he said.

Then he saw that I was crying.  I don't remember what he said but he did his usual when I cry.  Avoid and deflect.  Change the subject.  Run.  Hide. 

OH MY GOD, WHAT DO I DO?????????????  SHE WEEPS????????  SOMEBODY HELP ME!

He held my hand as I whimpered towards the car.

Don't ask me why I thought that being my birthday and all, cancer would give me the day off.

We drove home, I needed to lay down.  I was exhausted.  My numb and swollen feet were really hurting.  My ego was hurting.  I just wanted my bed.

I laid down awhile, Husband left to do some grocery shopping for my birthday dinner and Thanksgiving.

He is doing his job and mine, and deserves a Medal of Valor.

I rebounded.  We had a nice dinner.  Had Grandma (his Mom) over, and Baby Bear.  I opened my gifts, nothing extravagant but spot on gifts from all.  Oh, I forgot to mention the birthday surprise left on my doorstep this morning.  It was my first gift of the day.  Thank you Nani.

I also opened a lovely present from Midge, a beautiful pink glass goblet with carved roses.  I messaged her "Ah, finally, a chalice fit for royalty such as myself.  I will put on my tiara (I have one you know) and toast myself tonight.

LONG LIVE THE QUEEN OF EVERYTHING."

Today was my birthday, I know it was, cause I got presents and phone calls and blew out candles.

It had all the trimmings of a birthday. 

Happy Birthday Chingobell.

(If you believe in fairies, you must keep clapping to keep her light glowing.  Commence clapping.)

Sunday, November 21, 2010

Fifty First Year Wisdom

It's my birthday Eve.  My last night of my fifty first year.  It's been a difficult and challenging one I'm ready to leave behind.  I learned some stuff though.  About life.  About myself.  I've made many friends.  I've let some go.  This is some of what I learned.

Don't add the salt to the big pot of water you are boiling for the pasta until after the water starts to boil.  The salt makes the water denser and takes longer to boil.


You could be rich, or beautiful, or smart, but if you don't have good health, you ain't got nothin.  Take good good care of you.  Get your annual physical.  Get your mammogram.  Exercise your body.  Eat lots of whole healthy foods.  Do everything you can to keep stress at a minimum.


If you are a woman, know your girls, your boobs.  Know how they look and feel and hang.  If you notice any changes at all, see your doctor.  Don't hesitate.


Despite some who say breast self exams are obsolete, I believe they are important having discovered my own cancer.


Educate yourself on the symptoms of breast cancer.  It's not always a lump.  Sometimes it is a slight change in appearance.  Sometimes it is a very itchy breast.


Take a multivitamin, Omega 3 AND don't forget the Vitamin D3.  Many people diagnosed with cancer have low levels of Vitamin D.


Stop banging and crying at the door that is closed.  It was not meant for you.  Head for the door that is open.

Spend as much time in nature as you can.  Walk in nature.  Sit in nature.  Schedule time quiet in nature.  Your soul needs this. 


Do what you love.  No more excuses.  Stop procrastinating.  Start today.


Show up for your life.  Show up for the people you love.  Sometimes this is just a quiet presence, or a bouquet cut from your garden, or a there, there now, when they cry.


Invest in and take charge of your own happiness.  Every day.  Start by knowing what makes you happy, and letting go of what makes you unhappy.  No one can do this for you.  Teach this to your children. 


Let go of what you've been holding on to that no longer works for you, whether it be things or relationships or bad habits or negative thinking.  Be willing to work on what is important to you.

Make your space your haven.  Surround yourself with beautiful things.  Get rid of what you don't love or need or use.  "The good is for today."  [Thank you Wagonwife Designs]


Exercise your body.  Walk.  Stretch.  Sweat.  Dance.  Your body and your mind will reward you and your health.


Get out of your head.  Get present and awake and deliberate in your life.


Journal.  Write down your thoughts and worries, doodles and stories, write a love letter to yourself.  Getting it out of your brain and onto the page will help quiet your mind and clear the space for your creativity.

Ask for help.  Let people help you when you need help.  Help someone who needs your help.

Don't hold back or put off saying things like "I love you.  You are important to me.  You can always count on me.  I'm sorry.  Thank you.  I forgive you."

Feelings are weather.  Get quiet.  Most of what you feel you don't need to act on.

Don't save hollandaise or lobster or chocolate for special occasions.  Don't save the good china for Thanksgiving and Christmas.  Drink your orange juice out of a champagne flute and let your kids toast their Martinelli's out of a wine glass.  Do all this often.

Be the person you'd like your kids to be, and that is how to teach them.  Be the person your dog thinks you are.

You could be rich or beautiful or smart, but if you can't poop, you ain't got nothin.

Get off the computer, get off your phone.  Spend time with the people you love, who make you laugh, who inspire you, who validate you, who add value to your life.  If it hurts or bewilders or confuses, withholds or is frequently absent, let it go to give space to what nurtures you, inspires you and loves you.

Write more letters.  Handwritten.  Sent in the mail.  Don't just send thank you notes for things.  Send them when you feel thankful for something someone has done, like your doctor, or a nurse, or a teacher, or a friend.

Say what you mean.  Mean what you say.  Know when to shut up.

Sometimes great change and progress and growth requires chaos and suffering.  Sometimes your heart has to crack wide open for a seed of something new to grow.  Sometimes confusion is the path.

Pray.  Prayers are not for wishing or making deals with God.  Prayers are a conversation, a dialogue, so your heart can be opened to love, and you can learn to embrace things are they are.

Start where you are.  You are on the path.  Keep going.

Life is one lesson after another after another, and it's not so much what happens to us, it's our reply.  Let your reply be joyful, loving, grateful, kind, open and funny.

Things are not as important as relationships.  Money is not as important as gratefulness.  Success is not measured by a bank account or fame.  Success is every time you get knocked down, you pick yourself up, dust yourself off, and commit to trying again.

Enlightenment is not doing the same old thing over and over again expecting a different result.  The universe will continue to send you what you need to learn until you learn it.

I believe in Angels, furry ones too.

Cancer sucks.

You are allowed.  To grieve, to whine, to be angry.  Don't spend too much time there though.  You'll miss out on the good stuff happening all around you.

In case of emergency, break the glass, and drop an F bomb.

Let your laughter keep your tears company.

Bad happens. Good is on its way.

If you are diagnosed with breast cancer, do your homework and find yourself the best oncologist, general surgeon, and plastic surgeon you can, and who you feel connected to.  Receive your care close to home.  Contact the American Cancer Society, they have many programs to help you.  Surround yourself with your Sisters who have walked this path.  They will be your greatest resource and comfort.

Be yourself.

Fear is no match for Love.

Love.  Love.  Love.

Saturday, November 20, 2010

Little Bird

Do not fear therefore; you are of more value than many sparrows.  Matthew 10:31

I was thinking about this today, as I looked out the french doors into the yard.  It was a rainy day, cold and the wind was blowing, and no boys in the house.  I saw a little flock of birds take shelter in the drooping branches of the large cedar just above our lawn.  It made me think about the verse when God says don't be afraid, if I take care of these little birds, then surely I will take care of you.

I wanted to find the verse and did, and while looking found this one too.

Your Father knows what you need before you ask him. Matthew 6:8

Um, Father, It's me, little bird.  Some days it's really hard to reconcile this breast cancer thing with your promises to me.

If you knew what I needed before I needed it, why didn't you just kill the cancer that started in my body?

Couldn't you have pulled some strings for me so it could have been detected when it was smaller?  I never thought I would envy anybody that had to have a lumpectomy, but I do now.  Wouldn't it have been just as easy to let me be a Stage I instead of a Stage III?

If there was a lesson or a plan for me, was this the only way I could learn it?  Couldn't we have chosen something different, like, I don't know, easier?  Like in The Christmas Carol, I could have had a dream and woke the next morning with an epiphany.

If you value me more than the little sparrows, how could you let me walk into this Valley and keep me here so long?

I watched the little birds huddled together in the cold and the rain.

Father?

Were you so busy taking care of the starving in Africa, or the people in Haiti after the earthquake, or the miner's in Chile, that you forgot about me?

What about me?

Why do bad things happen?

There are so many mysteries to this life and hard hard tests of faith.  When bad things happen, is it destiny or fate?  When good things happen, is it luck?  How do I know the difference between Your favor and luck?  When bad things happen, are You angry at me?  Am I on a time out?

Should I assign any meaning to this Lord?

Hello?

Can you hear me now?  Can you hear me now?

The little birds suddenly left the shelter and safety of the tree, and flew out into the bad weather again.  I wondered where would they go.  Had God whispered a better place and they followed?

I started a fire, the dogs gathered around as I crumpled newspaper and stacked logs.  It wasn't long before the dry wood crackled and spat glowing embers.

Maybe I'm not quiet enough I thought, as I patted the head of a shaggy little pound poodle.  Does God talk to me?

Is he dragging this out and taking me to the limits of my patience and courage cause I'm not listening?

The fire popped really loud, startling the dogs and me.

I had to laugh.

I hope that wasn't a Yes.












Friday, November 19, 2010

Over the Shoulder Chicken Fried Steak Holder

I have started the search for a bra for these, well these, these things that hang from my chest like slabs of pounded meat, with two very nice nipples attached.  They don't really fit into a bra.  I suppose I could jelly roll them into a bra, that might work, but wouldn't be very comfortable.  I have tried wearing my old sports bras, but the bands are too tight against the tender and still painful area where my drains were.

A few of my Sisters recommended a "Bandini' by Hanes, it's like a tube top bra, but I need something to give these things a little more support.

I also tried a bra that looks like a sports bra, it has the racer back, and a much looser band.  Still no support.

I remembered The Good Witch mentioned a prosthetic medical supply company that also had mastectomy bras and a mastectomy fitting specialist on site.  Since the store is about twenty minutes away, I thought I'd call first and explain what I'm working with here and if they might have something for me.

I talked to Yolanda, who is the fitting specialist there, and she was very nice.  As it turns out,  almost everything they make is for women who have a complete mastectomy, with basically no breast there at all, only a large horizontal scar where each breast used to be.  She doesn't see very many skin sparing mastectomy patients.

It's not that skin sparing is so new, but most of the women who are able to get it have immediate reconstruction, or have tissue expanders put in.  A tissue expander is an inflatable implant that is usually placed under the chest muscle during the mastectomy operation, and the patient comes back and gets a little more solution put into the expander over a period of time.  The expander stretches the chest muscle and overlaying skin so that when reconstruction is performed later, the pocket will accommodate a real implant depending on which size a woman chooses.

I didn't get expanders because I had large enough breasts that I had plenty of skin, and because I am having a DIEP procedure, the new tissue is not placed under muscle.  They only do that with implants.  With the DIEP, the tissue will be placed on top of the muscle, and will fill up the skin that is hanging off me now.

Yolanda had never fit anyone with a skin sparing without an expander in, but she was very willing to help me come up with something.  She suggested I might try a bra with foam padding, like a push up bra.  I told her I didn't think this would work because push up bra's usually push from the sides and smash the boobies together to make them look bigger and like you have more cleavage.

I explained to her, that won't really work with me.  I need something UNDER these things.  I am not dealing with volume or something that is 3D, if you will.  I am dealing with something that is flat, thus the chicken fried steak analogy.

Yolanda suggested we might try what is called a partial prosthetic.  Instead of placing these over the chest as they usually do, we could place them under mine, and then I'd be able to fill out a small cup.  It's worth a try.  Yolanda is off next week for the holiday, so I'll go in and see her the week after Thanksgiving.

The Good Witch had already given me a prescription for a prosthetic bra.  Next week, I'll call my insurance company to find out what they cover.  From what I've heard, many insurance companies will cover the prosthetic, and/or a special prosthetic bra.  They can be expensive, several hundred dollars.

So begins my search for something to carry these things with.  I am feeling quite a bit of back and shoulder pain that is not directly a result of my surgery.  It's from hunching forward.  I can feel my posture is not right and my shoulders are really hunched forward and raised up.  Several of my Sisters have recommended a bra really helps with that, by reminding your body to keep shoulders back and down.

My neuropathy in my feet still only allows me to be on them for a short period of time.  I'm hoping sometime next week, I can get out and try some regular bra's on to see what I'm dealing with.

I went online and found a few more exercises to add to the eency weency spider.  One that seems to be helping has you place your hands together in front of you, as if to pray, and then while holding your hands together in this position, you slowly raise your hands as high as you can go, then slowly back down again.  My left arm seems to go through phases, sometimes feeling extremely tight and when I try to raise it, I can feel the painful pulling from my elbow to my armpit and down my side into and across my ribs.  Other times, my arm feels looser, it still hurts in the inner arm but does not pull all the way down my side.

There is no numbness in my right arm itself, only on the front of my chest and underneath what used to be Mopsy.  What a difference for those who only need a mastectomy and no lymph node removal!  Count your blessings Sister!  Much easier recovery on my right side; three weeks out pain levels are about a 4.

On my left side, three weeks out, the pain level is an 8.  Under my left armpit and on the inner arm itself, both are still numb to the touch, and inside is the prickly pain.  The numbness continues across the left side, where Flopsy used to be, and underneath.

I have cut back on the Dilaudid, now taking one 2mg pill every 8 hours instead of every 4.  Did you know that Dilaudid is what they use to help heroin addicts get off heroin?  I'm glad I've only been on it a week, and tapering off now.

It's interesting, I read that for a drug addict, where only addiction is involved but no pain, even 2mg of Dilaudid causes extreme euphoria and a great high.  When it is given to a person who is in moderate to severe pain (like me), there is no euphoria or high, just pain relief.  I thought that was fascinating when I was reading about it on a "kicking heroin" website today.  I started out looking for info regarding getting off Dilaudid, and if I needed to taper off gradually.  The answer is yes, but thankfully, I don't have much to worry about even if I stopped cold, maybe some headaches and body aches for a day or two.

Researching the Dilaudid is what lead me to the kicking heroin site.  Sure is amazing and scary what you can find on the Internet, like people asking about the street value of their Dilaudid meds.

I may not be able to find a garment to hold these flat Playdoh boobies, but if I need to kick a heroin addiction, I know who to talk to.

This is the world we live in now.

Scary.

I remember the days when you had to get up from the couch to turn the channel on the TV.

I remember the days when you had to go to the Library to look things up in the Encyclopedia Britannica.

I remember the days when looking at pornography meant hiding a Hustler magazine under the bed or in the garage.

There are a lot of things I miss about growing up in that era, but I'm thankful I was diagnosed with breast cancer in the world we live in now.

I pray that in the next generation, and God knows what that technology will look like, breast cancer will be as benign as measles or polio.

Just a simple vaccine given to baby girls.

What a beautiful world.

Thursday, November 18, 2010

The Woman in the Mirror

I was watching one of my favorite TV food personalities, Nigella Lawson, on her show Nigella Express.  She was making a pea and pesto soup, which was very simple to make and looked delicious.  I love the end of each show, when in her negligee, she sneaks a treat out of the fridge, and doesn't even turn the kitchen light on.  As she pureed the hot soup in a blender, I realized I was watching her boobs, longingly.


Nigella Lawson


That's when it hit me, I missed my fat bunnies, and hers remind me of Flopsy and Mopsy.  I don't miss the care and upkeep of them, but I do miss them.   It's very strange looking at myself in the mirror, or after I've put a shirt on.   There is a counter top where two melons used to be.

I miss em.

Some days, when I look up at the mirror while brushing my teeth, I see my short Peter Pan hair, and no boobs where boobs used to be, and I can't find me.   Me is gone.

I only see the cancer me.

Some days, I am really tired of looking at her, and every day lately, I am tired of being her.

I pray that when I've finished treatment, my hair returns, and my body has been reconstructed, I will see me again.

I know from listening to many of my Sister's who have been out of treatment for some time, moving on with their new normal is not so easy.  Even though their physical appearance has been restored, they still see cancer self or wait for the other shoe to drop.  I understand how that can be paralyzing.

I was wondering tonight,

are you ever really cancer free when you're cancer free?












Wednesday, November 17, 2010

Jam Up and Jelly Tight

I vaguely remember a song, from the late 60's I think, it was called Jam Up and Jelly Tight.  Don't even remember what it was about, it just had one of these catchy melodies with lyrics that get stuck in your brain and drive you insane.

Jam Up and Jelly Tight.  My my my baby, you're outta sight.

They used to say those kind of things back then, "outta sight."  Now they say things like "hecka tight."

This is how boring and pathetic my world has become, doing what I can to stretch out this tight tight arm, and then these things come to me, and I add to my suffering by getting a song stuck in my head that I never really liked in the first place.

Jelly tight.  I have been doing the eency weency spider exercise, letting my fingers do the walking.  I don't think it's helping much.

Last night, I had my robe on while writing my blog, I was sitting on my bed.  It occurred to me, why do I have my robe cinched so so tight?  I loosened the bow and untied it.

Oh.  Wasn't my robe at all.  This tightness is INSIDE.  It feels as if I should be able to loosen it, like something is around me, and I should be able to loosen it.  It hasn't loosened yet.

I'm sleeping more, slept several hours last night, woke up early, then fell asleep and slept a few hours more.  I've been hoping and hoping for more sleep, and this morning, when I got out of bed after 11 a.m., I felt guilty.  It was weird.  Like I was supposed to be doing something else or supposed to be somewhere.

I have that feeling often lately, like I am supposed to be somewhere, I just can't remember where.  I only know when I get that feeling and look at the clock, that was the time I was supposed to be there.  And now I'm late.

I have never not worked.  Not since I got my worker's permit at 15 and a half.  I have never in my life been off of work this long.

Recovery and healing is my job right now.  I hope it's working.  I've always been a good employee. How will I know if I'm doing a good job?  How do I measure that?  Will I get a review?  Will I eventually get promoted to wellness?

My world seems so small right now, cause it is, so small and focused on what my body has to say.  Everyday.

Feels like these doggie girls and I wait for the boys to come home, that is when the day starts, and the house comes alive again, filled with the sound of them.

When I ask Robin how his day was, he says "Adequate."  That is his newest thing.  It makes me laugh.

I like making him laugh.  You don't know this about me.  I can imitate the Elmo voice.  I can sing Elmo's song, about Elmo's world, and it makes Robin laugh.  He also loved when I did that when he was a baby.  Except the one time, I sang so loud, only a couple of words in, his lip quivered and he cried, I scared the baby poop out of him.

This recovery thing requires great patience, diligence and spirit.  It is slow slow tedious work.  I know at some point I will turn a corner and will start feeling better physically.  I don't know how people with chronic illness or those confined to a wheel chair or with other types of physical disabilities cope with all those continual limitations.

I am finding it a real challenge to live in a world that is so small, so much of it spent in my head.

The tree in our front yard is breathtaking beautiful right now, all shades of moss green to burnt orange.  The spectrum of color is spectacular, all on this one tree, all for us, every year.  There are so many dry and crisp leaves all over the lawn and the flagstone path leading to the front door.

I crunched leaves today.  I stepped and crunched.  Crunch.  Crunch.  Crunch.

It is Fall.

I forgot.

I love the Fall.

Have you crunched some leaves yet this Fall?

What are you waiting for?

Tuesday, November 16, 2010

Chick Magnet

Lots more of the same today folks, must have been a swarm of jellyfish that I bounced through, like the scene in Finding Nemo.  It is relentless, and even though I am taking the pain meds every four hours, of that only 2 have significant relief.

Prickly prickly, stinging, tingle tingle.

Tingle Bells, Tingle Bells.

Silent Night, Prickly Night.

Have Yourself a Prickly Tingly Christmas.

Not much to tell you about today, or the day before that or the day before that, but any day now folks, I will be turning the corner

JUST IN TIME TO GET RADIATED!

Goody!!

I have only driven twice in the last three weeks.  Once last Friday to see The Good Witch.  Then again today to pick up Robin after Marching Band practice.  A few days ago he had jokingly asked me to bring Muffin along the next time I pick him up.

"How come honey?"

"That little puppy is a chick magnet, Mom!"

Imagine the surprise on his face today, when I parked the car, and Muffin bounded out as I hobbled behind, while Robin's back was to us.  Soon enough, Muffy was jumping all over her boy, and Robin gave me the biggest, cutest, I love you Crazy Mama, grin ever!

Unfortunately, all the girls had already been picked up, but Robin's loss was Muffy's gain, getting loads of attention from all the boys waiting for their rides!  She was beside herself and a crazy poodle fool going from one to the other, all these hands reaching for her and petting her.

I'm sure now, she will be the one begging me to bring her along to pick up Robin.

I received a comment on last night's blog that made me super happy.  Well, they all do, I love reading the comments.  This one was really special and completely unexpected!

I know I've mentioned on this blog several times a little book I regarded as my chemo bible.  It's called the ChemoCompanion Care Guide.  On one of my early appointments with The Good Witch, Husband found a stack of them in the waiting room for patients.  It turned out to be a book that was kept on my nightstand all through my five months of chemo.  I can't say enough how much it helped me.  The cover of my copy has water stains from the night I spilled my glass of water on it, while reaching for nausea meds.  I cleaned up the book before I took my meds that night!  All the pages of that little book are worn, it was such a huge help and resource for me.  I kept it within hands reach, literally.

I received this message on last night's post.

This blog is a great service to women who will follow in your footsteps, as too many will. You are part of a sisterhood that will forever hold each other up. Best of wishes as you continue your journey. Jean Sprengel, MD Author, ChemoCompanion Care Guide

I about fell off my chair reading that!  Wow.  Dr. Sprengel, who is an anesthesiologist, wrote the book for her sister Kaye, after Kaye had a recurrence of breast cancer that would require chemotherapy.  That little book was so important to me!  What a great great surprise, I don't know how she found my blog but it made me really happy tonight.

Thank you so much Dr. Sprengel for your comment and encouragement.  You have no idea how much it means to me coming from you!  I think that little book is a MUST HAVE for anyone receiving chemotherapy.

As a reminder for those that are interested, here is the link where you can purchase the book.

http://chemocompanioncares.com/

Woo hoo!!!  My little blog that could.  Woo hoo!!!!!

Ouch.  Ouch.

Tingle Bells.  Tingle Bells.







Monday, November 15, 2010

Tingle Tingle Little Star, How I Wonder When You'll Go Away

This prickly prickly tingling is taking over my body's universe, three weeks out from surgery, and almost two months out from chemo.

There is a 6 inch band of painful prickly tingling in my upper body, with a spectrum that ranges from mild to severe.  Across the front of my chest it is primarily concentrated at the top of where my breasts would have been at their fullest, and across where my cleavage used to be.  It is strange because there is a fair amount of prickly tingling, but less than an inch away, inside and underneath what is left of my breasts, is a very different kind of pain.  That pain is more what I am accustomed to after surgery, having had two C-sections.

The prickly tingle is very intense and exaggerated in my left arm, especially when I try to raise it, as if the "rubber band" inside it gets extremely tight and if I push it, it will snap.

The prickly tingle continues around to my back, concentrated between my shoulder blades.  As it approaches my right shoulder blade, the prickly tingle fades to mild, and is almost negligible in my right arm.  It does not come on the radar again until you come around to the front, just above my right breast.

I don't know how to describe the prickly tingle.  It is painful, uncomfortable and very strange; maybe this is how it feels after getting stung by a jellyfish.

The surgical pain inside my breasts and under them responds fairly well to the painkillers, the prickly pain does not.

I got out of the house today, helping Husband grocery shop, and the neuropathy in my hands and feet flared up.  It was some of the worst its been since starting about four months ago.

I swear, I almost got on one of those little scooters the old people use to zip around the grocery store.  I just couldn't bring myself to do it, just like I didn't fill out the AARP application when it came in the mail right before my fiftieth birthday.  Husband was worried I'd run someone over with the scooter, he was probably right, and I never was a very good parallel parker.  Do they test you on your parallel parking skills on one of those, where you have to slide in between the avocados and the oranges?

After my big day out today, my feet are still talking, and aching like hell.

Sometimes I wonder, how much of this old lady stuff will go away?  What's gonna happen when I start the drugs to completely shut down my hormones, after radiation?

Scary.  Lord, help the boys in this house.

I have a birthday comin.

The good news?

Instead of turning 52, my brain feels like I should be turning 32.

The bad news?

My body feels like I'll be turning 92, and

I got just the boobies for the occasion.
Related Posts Plugin for WordPress, Blogger...
Site Meter