The PRECIOUS Present.

Last week, I was in charge of leading our Mom’s Group meeting at church. What does this entail exactly? Well…I get to stand up in front of a group of anywhere between 20-50 women, welcome everyone, run through agenda items, introduce the current speaker, and offer up some words of inspiration. I always struggle with the words of inspiration part. There are a bazillion poems, prayers and stories on the Internet….how do I find the perfect message? I need something to inspire us during the season or something to encourage us as we trudge through our busy mom lives…hmmmmmmmm.

Two days before our meeting, I was shopping at Pier One for an ornament for an ornament exchange. (By the way…very dangerous to shop at Pier One during the holidays…so many BEAUTIFUL, sparkly things….and I LOVE sparkly things!) Anyways, as I was looking for an ornament to give away, and I came across an ornament that spoke very loudly to me. It was THIS one:

 

 

 

It caught my eye because it was sparkly, pink and very symbolic of my cancer journey this past year. It reminded me of the quote that I keep referencing about life being a “gift”. I have been blessed with the very special GIFT of being cancer-free this Christmas. I don’t EVER want to forget that. Okay…I HAVE to have this ornament! So, into my shopping basket it went and here it sits on my kitchen table as a simple reminder of one of the many things I am thankful for.

Wait a minute….this sparkly, pink gift reminds me of a very beautiful message I heard back in college. It was a book called the “The Precious Present”, by Spencer Johnson. My dear friend Kari gave me this book as a birthday present after we enjoyed hearing one of our favorite campus pastors read it out loud to us earlier that year.

This book contains the PERFECT message! Inspirational? Yes! Pertinent to us moms? Check! Moving and thought-provoking? Absolutely!

I chose to read a portion of the book to my mom’s group at church. The beginning of the story was an easy read for me, but toward the end of the excerpt I chose, I had to fight back tears as I tried to steady my voice. Oh boy…I didn’t want to cry in front of all of these people!  *deep breath* (The “old Renee” would have been embarrassed to get emotional in front of a group. The “NEW Renee” knew deep down inside it was OK! It was OK because everyone in that room knew about the hardships of my journey, in fact many of them were a part of the HUGE support system that carried me through it. There was no judgement in the room that day….only warmth and love!)

It is such a beautiful message, that I would like to share a portion of it with you here…I hope you will take a few moments to read through it…I think you will enjoy it!
 
The Precious Present, by Spencer Johnson

Once there was a boy, who listened to an old man. And, thus, began to learn about The Precious Present.

“It is a present because it is a gift,” the contented man explained. "And it is called The Precious Present, because it is the best present of all."

When the boy asked why, the old man explained.  

“It is the best present a person can receive because anyone who receives such a gift is happy forever.”

“Wow!” the little boy exclaimed. “I hope someone gives me The Precious Present. Maybe I’ll get it for Christmas.”

The boy ran off to play. And the old man smiled.

He liked to watch the little boy play. He saw the smile on the youngster’s face and heard him laughing as he swung from a nearby tree. The boy was happy. And it was a joy to see.
 
The old man also liked to watch the boy work. He even rose early on Saturday mornings to watch the little laborer across the street mow the lawn. The boy actually whistled while he worked. The little child was happy no matter what he was doing. It was, indeed, a joy to behold.

When he thought about what the old man had said, the boy thought he understood. He knew about presents… 

Like the bicycle he got for his birthday and the gifts he found under the tree on Christmas morning. But as the boy thought more about it, he knew. The joy of toys never lasts forever.

The boy began to feel uneasy. “What then,” he wondered, “is The Precious Present?

“What could be so good… so much better than any other present…that it is called The Precious Present?”

“What could possibly make me happy forever?”

He found it difficult to even imagine the answer. And so he returned to ask the old man.

“Is The Precious Present a magical ring? One that I might put on my finger and make all my wishes come true?”

“No,” he was told.

The Precious Present
Has Nothing TO Do With Wishing.

As the boy grew older he continued to wonder. He went to the old man.

“Is The Precious Present a flying carpet?” he inquired.  “One that I could get on and go any place that I liked?”

“No,” the man quietly replied.

When You Have The Precious Present
You Are Perfectly Content To Be Where You Are.

Now that the boy was becoming a young man, he felt a bit foolish for asking. But he was uncomfortable. He began to see that he was not achieving what he wanted. “Is The Precious Present, “he slowly ventured, “a sunken treasure? Perhaps rare gold coins buried by pirates long ago?”

“No, young man,” the old man told him. “It is not.”

The Richness Is Rare Indeed, But…
The Wealth Of The Precious Present Comes Only From Itself.

The young man thought for a moment. Then he became annoyed.

“You told me,” the young man said, “that anyone who receives such a present would be happy forever. I never got such a gift as a child.”

“I’m afraid you don’t understand,” the old man responded.

You Already Know What The Precious Present Is.
You Already Know Where To Find It.
And You Already Know How It Can Make You Happy.
You Knew It Best When You Were A Small Child.
You Have Simply Forgotten.

The young man went away to think. But as time passed, he became frustrated, and, finally, angry. He eventually confronted the old man.

“If you want me to be happy, “the young man shouted, “why don’t you just tell me what the The Precious Present is?”

“And where to find it?” the old man volleyed.

“Yes, exactly,” the young man demanded.

“I would like to,” the old man began. “But I do not have such power. No one does. Only you have the power to make yourself happy,” the old man said. “Only you.”

The Precious Present Is Not Something That Someone Gives To You.
It Is A Gift That You Give Yourself.

The young man was confused, but determined. He resolved to find The Precious Present himself.

And so…He packed his bags. He left where he was. And went elsewhere to look for The Precious Present.

After many frustrating years, the man grew tired of looking for the The Precious Present.

He had read all the latest books. And he had looked in The Wall Street Journal. He had looked in the mirror. And into the faces of other people.

He had wanted so much to find The Precious Present. He had gone to extraordinary lengths. He had looked for it at the tops of mountains and in cold dark caves. He had searched for it in dense, humid jungles. And underneath the seas. 

But it was all to no avail. His stressful search had exhausted him. Occasionally, he even became ill. But he did not know why.

The man returned wearily to the old man’s side. The old man was happy to see him. They often smiled and occasionally laughed out loud together. The young man liked to be with the old man. He felt happy in his presence. He guessed that this was because the old man felt happy with himself.

It wasn’t that the old man’s life was so trouble-free. He didn’t appear to have a lot of money. He seemed to be alone most of the time. In fact, there was no apparent reason why he was so much happier and healthier than most people.  

But happy he was. And so were those who spent time with him. “Why does it feel so good to be with him?” the young man wondered. “Why?” He left wondering.

After many years, the once-young man returned to inquire further. He was now very unhappy and often ill. He needed to talk with the old man.

But the old man had grown very, very old. And, all too soon, he spoke no more. The wise voice could no longer be heard.

The man was alone.

At first, he was saddened by the loss of his old friend. And then he became frightened. Very frightened. He was afraid that he would never learn how to be happy. Until…

He finally accepted what had always been true. He was the only one who could find his own happiness. The unhappy man recalled what the happy old man had told him so many years ago. But as hard as he tried he could not figure it out…He tried to understand what he had heard.  

The Precious Present Has Nothing To Do With Wishing…
When You Have The Precious Present You Will Be Perfectly Content To Be Where You Are…
The Richness Of The Precious Present Comes From Its Own Source…
The Precious Present Is Not Something That Someone Gives To You…
It Is Something You Give To Yourself…

The unhappy man was now tired of looking for The Precious Present. He had grown so tired of trying that he simply stopped trying. 

And then, it happened! He didn’t know why it happened when it happened. It just…happened!

He realized that The Precious Present was just that:

The Present.

Not the past; and not the future, but The Precious Present.

He realized that the present moment is always precious. Not because it is absolutely flawless, which it often seems not to be. But because it is absolutely everything it is meant to be…at that moment.

In an instant the man was happy. He realized that he was in The Precious Present. He raised both hands triumphantly into the cool, fresh air. He was joyous…For one moment…

Then, just as quickly as he had discovered it, he let the joy of The Precious Present evaporate. He slowly lowered his hands, touched his forehead, and frowned. The man was unhappy---once again.  

“Why,” he asked himself, “didn’t I see the obvious long ago? Why have I missed so many precious moments? Why has it taken me so long to live in the present?” As the man remembered his fruitless travels around the world in his search for The Precious Present he knew how much happiness he had lost.

In the past, he had sensed what he thought was imperfect in too many moments. He had not experienced what each special time and place had to offer. He had missed a great deal. And he felt sad. The man continued to berate himself. And then he saw what he was doing. He observed that he was trapped by his guilt about the past.

When he became aware of his unhappiness and of his being in the past, he returned to the present moment. And he was happy.  

But then the man began to worry about the future. “Will I,” he asked, “be able to know the joy of living in The Precious Present tomorrow?” Then he saw he was living in the future and laughed---at himself.

He listened to what he now knew. And he heard the wisdom of his own voice.

It Is Wise For Me To Think About The Past And To Learn From My Past.
But It Is Not Wise For Me To Be In The Past.
For That Is How I Lose My Self.

It Is Also Wise To Think About The Future And To Prepare For My Future.
But It Is Not Wise For Me To Be In The Future.
For That, Too, Is How I Lose My Self.

And When I Lose My Self
I Lose What Is Most Precious To Me…

==============================
Although the story does not end here, I felt like this excerpt really conveyed the message I wanted to share with you this holiday season. J Thanks for taking the time to read along….

As my friend Kari inscribed on the inside cover of my book…”May you never let go of the PRECIOUS PRESENT.”

Love to all…

Nae

FEELING BLESSED.

December 20, 2012.

365 days ago today…my world CHANGED.

Breast Cancer. Uncertainty. Anxiety. Treatments. Love. Support. AND THE BLESSINGS OF PERSPECTIVE. 

“Life is not always tied with a bow, but it is always a gift!”**

Happy to be celebrating this year’s Christmas CANCER FREE!

**saw this quote in the newspaper last spring....LOVED it...just don't know the author.

Reconstruction Surgery...Day 1

Let’s see….where did I end off last time? Oh yes…I think I was frantically prepping for surgery and trying to enjoy some chips and dip, followed by a glass of yummy egg nog before the clock struck midnight. J Ha!

Following my midnight snack, I proceeded to follow the instructions for showering the night before surgery. (And they don’t just tell you to jump in the shower before going to the hospital. Nope….they give you very SPECIFIC instructions including a list of accepted anti-bacterial soaps that you are supposed to use.) The sheet of paper from the surgeon states that you should wash with special soap a good 3 or 4 times from your chin to your toes, concentrating specifically on surgical incision areas the night before surgery and then again the morning of. I showered at about midnight, slept in fresh clean sheets for a couple of hours (another tip on the surgical instruction sheet) and then got up around 6 something to do it all over again. Needless to say, I think that I was pretty darn clean!

My surgery was scheduled to start at 9:00 a.m. on 11/12/13, so we needed to be at the hospital around 7:00 for check-in. Once we got there, they gave me a number of hospital bracelets to wear…1 white, 1 red, 1 yellow and 1 pink.

The WHITE one stated my name and had several scannable “QR barcodes” on it. (from Wikipedia: A Quick Response code consists of black square dots arranged in a square grid, which can be read by an imaging device.)  Every time they would give me a new medication they would confirm my name and birth date with me verbally, and then they would use a little cash register scanner of sorts to scan the barcode on my bracelet.  

The RED one stated my allergies to medecine.

The YELLOW one stated that I was a fall risk…not because of my sheer gracefulness, but because of my anesthesia. (And YES I had to look up how to spell anesthesia J).

And the PINK one was a “limb alert” bracelet. Once you have had lymph nodes removed on one side of your body, they advise against having blood pressures taken or IVs drawn from that side due to the risk of something called Lymphedema. (Lymphedema involves swelling in the limb that can be controlled, but not cured.)

I was still a little apprehensive about being under for such a long period of time, but every nurse I talked to that morning reassured me that I really shouldn’t worry about it and that they had everything under control. Alrighty then….time to just let that go! J

Aaron sat with me as I was prepped in my pre-op room (vitals, IV placement, etc.), and then around 9:00 I was off to surgery. I don’t remember much accept feeling uneasy as they poked and prodded on the back of my spine in the operating room before they began. The next 11 hours are a blur. Ok….I don’t know if I can even call them a blur, because I really don’t remember any of it.
 
I wasn’t sure if I was going to feel “rested” after being out for most of the day, but I did indeed wake up groggy and tired. (Probably as a result of being on pain meds.) After numerous requests that morning, I was pleasantly surprised to wake up in a private room at about 8:30 p.m. Surgery took a good 9 hours and then I was in the recovery room for another 2 hours after that.

Aaron (bless his heart) never left my side. He slept on an uncomfortable chair all night long as the hospital staff came in every hour to check on me. Their check-ins consisted of taking my temperature, my blood pressure, checking my oxygen levels, administering medication, and examining my newly formed breasts.

For those of you that don’t know, I did not have implants or expanders for my reconstruction. Instead, I chose to do the TRAM flap procedure, which consisted of the surgeon using my own skin, fat, and muscle (taken from my abdomen) to construct new breasts. It is a lengthy surgery because the surgeon needs to be very precise in lining up the blood vessels on my chest after taking the tissue off of my abdomen. (For those of you that have had twins, you know how stretched out your skin gets and no matter what you do, it always just kind of hangs there. This was just an added bonus gift after all that I have had to endure this year. *big smile*)

In addition to observing my breasts visually and feeling the skin each hour, the nurses also used a Doppler machine to listen to them. Wait a minute….isn’t that something you hear on the weather channel? Well yes, it is, but it is also a tool that they use in the hospital.  

The Doppler machine has a cord with a small silver wand at the end (see picture below). They put an ultrasound-type gel on the end of the wand and they use it to monitor the blood flow in and out of your “flap”. If the blood flow is not sufficient to the new breasts, there is a risk of partial or complete loss of the tissue flap. (Insufficient blood flow is a bad thing and can require extra surgical care, that’s why they monitor this every hour for at least the first day or so.) Needless to say, I was happy to hear them find that “wispy-heartbeat-type-sound” every hour that they checked for it. J

Despite being woken up every hour for check-ups, what am I feeling? Besides feeling a little out of it, I feel HOT because they have a heated blanket on top of me (to encourage circulation to my new breast tissue) and the insides of my ELBOWS really hurt. And YES, I said elbows. Not breasts. Elbows. *smile* I could not for the life of me figure out why I couldn’t feel ANY pain on my breasts at all, but the inside portion of my arms REALLY hurt!?! What?

After quizzing the medical staff, I realized that my arms had been strapped down straight for a good 9 hours and that is why they were sore! Well DUH! Why didn’t I think of that? Now that I know why it hurts to straighten my arms….what can we do about it? Ahhh yes, ice packs! Regardless of how silly I must have looked, I was happy to have some relief, even if it only included having cool arms amidst the hot flashes of the heated blanket all night long.

Morning arrived and my surgeon stopped by to check me over. She was pleased with how the surgery went and said things were looking good so far. Hooray!

(You can click on the picture collage to enlarge it. More pictures to come in another post...)
 

Stay tuned for more information on the rest of my hospital stay and my recovery…

Thank you for your thoughts and prayers on that day and every day! There is POWER in prayer and I truly believe that…

Love to all,

Nae

 

Radiation Part 3 AND Reconstruction Surgery

Hi all…

Just trying to get caught up on my blog entries before surgery TOMORROW! EEK….where does the time go?? I will finish with some more thoughts below on radiation and then will talk briefly about my plans for reconstruction. Thanks again for following along…and of course, for being patient with my sporadic postings. J

My radiation treatments consisted of the same routine practically every day, except that every other day was “wet towel” day. On these days, the techs would get me all set up and then they would put a wet towel over my chest where the beams were pointing. They said that this was a way to control and vary the depth of the radiation so that the beams would affect my body more closely to the skin. I find it interesting to think about a wet towel providing another “layer” of my body and wonder how they came up with that technique….or any of their techniques for that matter? How do they KNOW that the beams are pointing precisely where they want them to point? (They ARE invisible, which seems kind of crazy to me.) And how do they really know how much air I need to inhale so that my chest will be at the exact location so they aren’t radiating any of my internal organs? Some things are just beyond my level of comprehension, but I am sure thankful that my doctors get it! I am constantly amazed by the level of technology and medicine we have available to us these days.

So the actual radiation procedure didn’t hurt at all, but what the radiation did to my skin sure was painful! One of our good friends compared the idea of my skin being radiated to the idea that it was, in a sense, being “microwaved”. Which is kind of yucky to think about, but it made understanding the burns easier for me. When I looked in the mirror, I could tell a definite difference in the color of my skin where it was radiated. It was pink at first, then turned a bright “sunburn” red, and then became seriously blistered (bigger than a half dollar size blisters in places). The most painful part was having OPEN blisters both on my chest and under my armpit. OUCH! My skin was RAW and it was NOT pleasant.

Again, my radiation techs and nurses weren’t the most nurturing people on the planet, so they only gave me lotions and protective patches for my skin when I proactively asked for them. (Even though they could obviously SEE my skin was raw, it was like pulling teeth to get extra patches from them. And it wasn’t until I was around other breast cancer patients at a support group that I was told there was a prescription level cream that I could be using to help my open blisters heal. I was really ANGRY that no one at my doctor’s office had even mentioned this as an option to me! Seriously…I shouldn’t have to call my nurse and ASK for a prescription cream for my burns, I feel like she should have just offered it up as an option. Sorry to sound bitter, but I really WAS bitter! *sigh*)

Anyways, I was able to play in a few volleyball tournaments over the course of my radiation treatments (which I LOVED!)…but it wasn’t an easy process to get ready for a day in the sand with open blisters. Armed with gauze padding, multiple rolls of pre-wrap and adhesive wrap for on top, Aaron carefully wrapped me up like a little mummy before we went out for the day. It was a tricky procedure, because I needed to be wrapped tightly enough so the bandages wouldn’t fall off, but I needed to be able to take a deep breath too! J

My skin got so bad toward the end, that they made me take some time off before finishing my last few treatments. While it was nice to have a break from the radiation, I was a little concerned because I didn’t think my skin would be healed for my surgery reconstruction date of September 3rd.

A week before my scheduled surgery, I went in to meet with my plastic surgeon. At that time, my skin was almost completely healed except for a very small scab (about the size of a lima bean). I was surprised at how well it had healed, but she said I wasn’t ready for surgery yet. (Even a very small opening in the skin can cause a huge risk for infection, and she didn’t want to chance it.) We decided it was better to push out my surgery date. And since we were already postponing it, I jumped at the chance to get some more indoor volleyball tournaments in before having another surgery.

My favorite number is 12. So November 12^th sounded like a good day to have surgery. Wait a MINUTE….not only is it the 12^th day of the month, but it is actually 11/12/13! How cool is that? I don’t think I will ever forget that and it must be a good omen….right? I sure hope so, because I am a little anxious about having surgery tomorrow.  

It’s not the idea of having surgery, but the length of the surgery that has me a little nervous. I am scheduled to have a TRAM flap reconstruction surgery. What does that mean exactly? Well, they are going to use skin/muscle/fat from my abdomen (think free tummy tuck….woohoo!!), to form newly reconstructed breasts. The surgery is low risk, but the idea of being under for 8+ hours seems excessively long to me! I have had a few tears thinking about it along the way and I am sure they will flow freely tomorrow morning, but that is just how I deal with each new uncertain challenge and things have always turned out just fine! (Knock on lots of wood….and YES….I really did just knock on wood. *smile*)

So here I am trying to get this blog post up at 11:30pm the night before my surgery. For those of you that know me well…you are laughing at me leaving things to the last minute….AGAIN. I don’t think I will ever learn, but the good news is that I have been so busy today, that I really haven’t had a chance to sit and worry! Worrying is never fun, so I am going to do my best to LET GO and just have faith in the path that God has in store for me. If you have a moment to send a little prayer my way on 11/12/13 for a smooth surgery…I would highly appreciate it. J

I’d better sign off for now…I still have to water my plants, pack, take a shower with special soap (yes….these were the instructions from my doc) and eat something before the clock strikes midnight! HA!

I hope you all know how very much you mean to me! I have the best family and friends a girl could ask for.

Love and Hugs….

Nae

Radiation--Part 2

Ok, so I just realized that I promised I wouldn’t wait another month to update my blog and here it is Oct. 1^st! Technically….it is still under a month’s time since my last post, so I hope you will forgive me for the delay. J

Let’s see….where were we? Ah, yes…..the beginning of radiation.

Monday, June 24^th is when it all began. I drove to radiation, put my little pink parking permit in the front windshield and went inside to undergo my 20 minutes of therapy. I know that they informed me that it wouldn’t hurt, but deep down I was nervous and a little uneasy about it all. It didn’t make me feel any better that I was entering a room where there were warning signs outside the door that read CAUTION “high radiation area” and CAUTION “radioactive materials” to alert the general public. 

Upon entering the room, the technicians took my picture and confirmed my birth date to make sure they had the correct radiation plan in place for my session. After undressing from the waist up, they had me lie down on the table and relax my arms up above my head on my “pillow”. They kept fidgeting with it and telling me to relax as they pushed and pulled my arms every which way. I told them it didn’t feel right and they realized that they had the WRONG pillow underneath me. (it was another patient’s pillow mold, apparently with the same last name). Ummmm…I was a little uncertain before….but now they had me VERY anxious and not very confident that they knew what they were doing at all! They shrugged it off like it was no big deal….but I knew deep down that it really WAS a big deal!

As with any of my treatments, I experienced a number of tears before we began. I think that uncertainty just brings out my fears, and my form of release comes in the way of tears ….so out they came! Unlike, any of my other health care providers (which have all been AWESOME), I didn’t receive any heart-warming reassurances that everything was going to be ok or compassionate hand squeezes…they simple went about their work positioning me where I needed to be while the tears fell down my face. I was unable to even wipe my own tears because my arms were positioned above my head and I was supposed to lay as still as possible. I felt like the techs there that day were just going through the motions of their job with not a care in the world. Didn’t they understand what I was going through? Couldn’t they see that I was upset? I will never forget how I felt that day and how surprised I was at their lack of compassion.  

After a while of them making sure I was setup and locked in place (using the laser lights, a ruler, and making me hold my breath while they measured and re-measured my location), they left the room. I can still remember the sound of the door closing. WAIT! I don’t want to be in here all alone!! Come back!!

It doesn’t matter what I wanted or didn’t want…the therapy was put in place for me to try to avoid my cancer from reoccurring, so I just needed to suck it up and go through with it. Whatever they were going to do to me was worth it if I could remain cancer free!

So there I was, all by myself, laying on this table in the middle of a dimly lit room with a HUGE machine sitting above and below my head/chest area. I wasn’t supposed to move at all but I couldn’t stop my eyes from looking here and there and everywhere before they began. I was alone in this room that was dangerous for anyone else to be in and I didn’t know what to expect.

The techs could see me, but I couldn’t see them. There was a video camera in the room and speakers so I could hear what they were instructing me to do, but I still felt all alone.

I decided that I would keep my eyes shut for the duration of my first radiation treatment. Before they began, I shut my eyes tightly and they didn’t open up until my treatment was completed. I am not sure if I thought that it would hurt “less” if my eyes were closed, or if I just wanted to avoid seeing things I didn’t want to see, but I felt better having them closed, so that’s what I did. 

The machine was located both above and below the table I was lying on and it rotated around me to pinpoint specific angles of my body to radiate. The top part of the machine was in the shape of a circle a with a rectangular piece of glass on the bottom side. Inside the glass you could see a number of different sheets or sections of “lead” coming from each of the long sides of the rectangle to meet in the middle. The lead pieces moved in and out of sight to create different openings or patterns to allow the the radiation beams through. (For those of you that do not know…lead is something that is used to block harmful beams of radiation and often times you will get a lead filled apron to wear when getting x-rays at the dentist or other doctors to protect your body from unnecessary harm.)

The patterns of lead in this machine would change for each burst of radiation I received. The sound of the lead sheets moving around reminded me of a “Transformer” movie with a lot of robots transforming into something different….it was very mechanical in nature.  

On the bottom side of me, they extended out a big round circle (about the size of a small kitchen table) and it was called the “beam stopper”. It was super loud when they first extended it out, but when I asked what it was and they told me it was in place to block the radiation beams from going right through the wall, I understood why it was so noisy! I am sure it was full of lead and extra heavy! The idea of having strong bursts of radiation pointed right at me that could potentially go through the wall and harm other people made me even more uneasy, but what could I do except try to relax and just power through it all?

Once the linear accelerator was in place and the lead patterns were conformed, they instructed me to take a breath and hold it. While I held my breath, I could hear a long, low continuous beep that indicated that they were radiating my body. Once the beep stopped, they told me I could breathe again, while they repositioned the accelerator for the next burst. The length of time each burst of radiation took really varied in nature. Some were longer periods of time with lower concentration beams (maybe 40 seconds) and others were very brief with extremely high concentrated bursts (maybe 2 seconds).  

I don’t know about you, but I realized that I am not very good at holding my breath for long periods of time. There were several instances where I would get panicky that I couldn’t hold it any longer! I think I freaked out because I wanted to be able to breathe, but I didn’t know how much longer I needed to hold my breath and I couldn’t move or talk to them to find out when it would stop.

Having to hold my breath was probably the most stressful part about my radiation. I was happy that I couldn’t feel anything while it was happening, and I was glad that it was only a short period of time (it took about 20 minutes to complete and then I was on my way)...

Below are some pictures of the machine I was describing above (you can click on it to enlarge it)...

 

 

Staytuned for Radiation part 3!

Have a great week everyone…

Love to all!

Nae

Radiation--Part 1

Is it September ALREADY? Having the kids home over the summer made it tricky to get anything done….including blog entries! Now that they are back in school though, I have some more time to reflect on life and get reorganized. Part of me feels a little guilty that I was excited for school to start….and part of me is really embracing it. J

You know what else I am REALLY embracing? The fact that I am DONE with radiation! WOOHOO!!! I have a lot of information and pictures to share about radiation and I don’t want to bore you and dump it all into one entry, so I will start with the first part and then add on in the days to come. J (And I promise not to wait a month before I post again.)

The end of June marked the beginning of my six and a half weeks of radiation therapy. WHY do I still need to have radiation if I am “cancer-free”? Is radiation really necessary? When I posed these questions to my radiation oncologist (separate from my regular oncologist), he told me that just because they didn’t find cancer, doesn’t mean it’s not there. Well that doesn’t seem very encouraging, now does it? I really don’t like to think about that, but it’s not something that I can control, so I continue to be “cautiously” optimistic and try to focus on the words “cancer free” instead. J

The radiation oncologist (RO) also went on to tell me that people with my aggressive form of breast cancer have a 45% chance of cancer reoccurring WITHOUT radiation therapy. WITH radiation however, the rate of reoccurrence goes down to only 5%!!!! Well then….let the radiation begin!  

So what is this radiation business?? How does it work? Does it hurt? Will I have side effects? How many times do I have to go, and for how long? So many questions and uncertainties running through my mind...especially because the only thing I associated with radiation was x-rays and the scary aftermath of nuclear weapons. Yikes!

First step was to develop a plan. My RO informed me that I would need a total of 33 treatments. I was scheduled to have radiation at 1:45 every day of the week, excluding weekends and holidays. The radiation itself lasted about 15 minutes and I was told that it did not hurt at all, but I could experience fatigue and sore/painful/burnt skin toward the end of treatment.

Before I could start my treatments though, I had to undergo preparations and a radiation “simulation”. Undressing from the waist up, I laid down on a table with my head resting on this “flat-rectangular-plastic-pillow-thing”. (I am sure that is the technical name for it. HA!) The nurse directed me to lift my arms up over my head and then she formed the pillow around me to support my arms in mid-air. Once I was in place, they took all of the “air” out of the pillow to create a mold specific to my body and the position they needed me to be in each time for therapy.

Precision is key. And when I say precision….I really mean it. The beams that they use for radiation are so potent and harmful that it is extremely important that you are only radiated where necessary. My plan consisted of specific areas that were carefully calculated to give me the best benefits from radiation, while trying to avoid harming any of my internal organs in the process.

In order to line me up correctly for treatment each time, they gave me 3 very small “pinpoint” tattoos (yes they are real tattoos), and they are located on my left chest wall and underneath my armpit (the side where my 13 lymph nodes were removed). I am pretty sure they are the only kind of tattoos my mom would have EVER allowed. She always used to tell me I would be “grounded for life” if I got a tattoo or ever went bungee jumping. *smile* I think that was her way of telling me that she didn’t approve of those things. I think I get a pass for my current circumstances….and no worries mom…you couldn’t pay me enough to go bungee jumping! J

Anyways….my radiation simulation occurred in the actual room where I would be having my treatments. They basically went through a trial run of having me lay on the table with my molded pillow, while using a number of red laser lights to line me up precisely where they wanted me to be. I think that there were at least 3 different laser lights hanging down from the ceiling and 2 additional lasers on the side walls….all pointed directly at me. They used these laser lights, in combination with a ruler and my tattoos as a guide to position the table and then lock it into place so that I was in the exact location for my actual treatment.

Once locked in place, they instructed me to take several deep breaths and hold them as they took some more measurements and rotated the “linear accelerator” (aka radiation machine) around me.

Now that the simulations were done and the preparations were in place, I was ready to begin my radiation treatments the following week.

Stay tuned for more info and pictures on my next blog entry, Radiation Part 2…

Love to all…

Nae

Well hello again!

Where does the time go? A lot has happened in the past month or two and I am behind on keeping you in the loop. ;) My apologies, but I am sure you understand. I last wrote about my double mastectomy and the days that followed. (This was back in May, which seems so very long ago already!)


After a little bit of a rough go at it with surgery in May, I was happy to have June bring some sunshine my way. I started the month with getting fitted for my prosthesis (translation: I got two new bras that had mesh pockets that you can slide silicon prosthesis into). They aren’t “real” and they aren’t “mine”, but they make me feel comfortable and more confident then I have in a long time. I think they look very natural and I am reassured by this every time someone gives me a confused look when I tell them I had a double mastectomy and they look at my chest. It’s a little AWKWARD, but I am thankful that people don’t “know” that they are fake, unless I tell them. J

So what is it like to not have a chest anymore? To be honest, it’s kind of weird. I don’t have a lot of sensation where they stitched me up (the nerves take a while to come back) and there is also somewhat of an indent where my breasts used to be, which is kind of crazy to think about, but I know that it is just temporary, so I try to roll with it.

It was a little over a month before I got to step out onto the volleyball court again (my first time in the sand). As most volleyball players know…your timing in the sand is quite different then indoors on a hard court. The sand provides somewhat of a challenge to run around in and jump out of, but one thing I hadn’t thought of was that my center of gravity had also changed. Anyone want to guess what part of my body hit the ground after my first initial jump in the sand?? My feet touched the ground first, but my balance landed me right on my butt! HA! I felt a little clumsy, but I quickly realized that the weight distribution of my body was just different and I needed to adjust. (I do not wear my prosthesis when I play volleyball.) It was a little bit of a learning experience for me, but I think I have it figured out for now… J

It was great to be able to get fit for my prosthesis, but my favorite part of June was that Aaron and I were able to take a wonderful trip to Ireland together! Two of our volleyball friends were scheduled to get married in a castle in Ireland and I made sure to do EVERYTHING in my power to arrange and rearrange my doctor’s appointments, surgery and radiation, so we could fit this trip in. J I wasn’t sure it was going to work, but I am SO thankful that it did! I think it was just what the doctor ordered at the halfway point in my cancer treatments-----chemo…CHECK, double mastectomy…CHECK...time for a trip before radiation and another surgery CHECK!!

Not only did we get to go to a wedding in a castle, but we got to spend time with a lot of wonderful friends and reconnect with each other after a rough 6 months of dealing with cancer. I feel very blessed that we were able to enjoy this time together and the only “side effects” I really encountered were some seriously swollen ankles on the trip, and I really can’t complain about that at all. J I was so excited to not have any restrictions while we were there, and my taste buds had returned to normal after chemo, so I was able to enjoy the food, the cider and the ice cream! Hooray!! Here are a few pictures from our trip… (you can click on each individual collage to see them up close.)

 

 

More info on radiation in my next entry…thanks for following along!

Love to all,

Nae

The week after surgery...

In the days that followed my surgery I slept A LOT. I juggled medications for pain along with my regular medications each day as I camped out in the recliner chair trying to heal. And even though it wasn’t the most pleasant task, Aaron graciously emptied my drainage tubes every morning and every night for about a week. Life seemed fine after surgery and I wasn’t experiencing any really serious complications….until I decided to get dressed up to go out one night.

Now it wasn’t that I *wanted* to get dressed up to go out (I had been comfortable just lounging around the house in my comfy pants and my surgical camisole), but it was our book club night and we had a special guest lined up. One of our book club members had entered a contest online and had won! National Best Selling Author, Jane Porter, was flying to MN to take our book club out to dinner! I had read two of her books and I really didn’t want to miss it. I was looking forward to getting out of the house for the first time since surgery, but the “dressing up” part had me in tears. L

I struggled to find a shirt that fit the way that I wanted it to. It needed to be big enough to fit all three of my drainage tubes and bulbs underneath, but I didn’t want to look like a big circus tent in the process! After painfully trying on multiple shirts (raising my arms above my head was a difficult task at the time), I decided there was no getting around it….I was just not going to be happy with whatever shirt I selected.

Looking at myself in the mirror, I had tears streaming down my face. Getting dressed up did not have that same “feel good” feeling anymore. I was bald, overweight, had ugly, discolored fingernails, and my shirt had voids where it shouldn’t have had any. Aaron saw the pain in my face and greeted me with a warm hug and reassuring words that only he could give.  

I *NEVER* thought that it would be this difficult! When I first got my diagnosis I was more upset about losing my hair then losing anything else, but now that I had lost both my chest and my hair I felt sad. I didn’t feel feminine at all and that was really hard to swallow. As hard and as painful as that was for me, I knew that it was only temporary, so I took a deep breath and went downstairs to wait for my ride.

I was very thankful my friend Angie offered to pick me up for book club that night. She had been through a similar medical journey and had constantly been there for me, offering a listening ear and many words of support along the way. Her support continued that night as the floodgates opened and I tearfully told her how I was feeling. She validated my feelings and offered encouragement as I tried to prepare myself to go out into the public eye.

Thankfully the rest of the evening was lovely…good food, good conversation….it was just what I needed!
 
The following day, my friend Steph spent the day running around to different doctors appointments with me. She held my hand when the surgeon removed my drainage tubes, she took notes when I talked with my oncologist and sat with me during my Herceptin treatment. I was blessed to have her there with me and appreciated the support she provided.

It was the first time I had met with my oncologist after surgery and I really wanted to talk more in depth with her about this notion of being “cancer free”. It was a light-hearted appointment and we shared many laughs and hugs along the way. She told me that they rarely have this kind of response to chemotherapy treatments and she was extremely pleased. I asked her what this meant moving forward and she said that I would need to come in for check-ups on a regular basis and that I should let her know if I detect any weird lumps, bumps or pain along the way. She also prescribed a new drug for me to take called Tamoxifen. What is Tamoxifen? Best way for me to describe it is to copy text straight off of WebMD:

Tamoxifen is the most commonly used hormone therapy for the treatment of breast cancer.

Many women have breast cancer that tests positive for estrogen receptors (ER+). This means that estrogen promotes the growth of the breast cancer cells. Tamoxifen blocks the effects of estrogen on these cells. It is often called an "anti-estrogen."

Tamoxifen slows or stops the growth of cancer cells that are already present in the body. It helps keep the original breast cancer from coming back and helps prevent new cancer in the opposite breast.

I will take Tamoxifen daily for the next 5-10 years and the possible side effects include….stroke, blood clots and hot flashes. Here’s hoping the side effects for this drug stay far, far away from me!

That’s enough for today….thanks for following along.  More blog entries to come regarding my radiation therapy, etc…

Enjoy your Fourth of July holiday!

Love to all…

Nae