Damn, damn, damn it all

  Last week as I was reading The Fresno Bee, I opened to the obits and was shocked. My heart dropped. There in front of me, was an obit for a young woman I partnered with on a painting for the Art of Life project (I wrote about it back in 2010 on this very  blog), sponsored by my oncologist, Dr. Chris Perkins. It was about a year and a half ago, January 2010.
  I remember meeting her and hearing her cancer story. She'd been going to Dr. Perkins for about 10 years.  Younger than me and oh so vibrant. Lori Budd. After hearing her tale, told not with sadness, but with a liveliness that I took away with me. I recall vividly how vivacious she was, despite what she'd been through. And I remember her saying, "I told Dr. Perkins that if I'm dying I want to know, and so far, he hasn't told me that, so I'm just living the best I can."
  She left an impression on me. You wouldn't have known at the time that there was anything wrong with her at all. She was working, caring for her family and running a mile a minute through life. It seemed like nothing could stop her. I was impressed with her attitude and grateful to have been paired up with her.
  I remember telling my husband about her and what a great attitude she'd had, facing cancer with no fear, facing recurrences as if it was nothing. Her spirit and vitality couldn't be stopped.
  About 8 years younger than me. A strong professional woman like me. A woman caring for a family, like me. A woman keeping her life together through it all, like me.
  Our painting, titled "We Never Walk Alone," was a hit. It hangs in the hallway at Perkins' office.
  I pray Lori held that thought through it all.
  Damn, that obit hit me hard.

 
  

How the heck do they do that?

   My husband and I went as scheduled to the surgery center at 6:20 a.m. This time was far easier; no compression stockings, no IV, not much of anything really. Dr. Askren gave us two nipple tabs to place where we thought they should be. He'd already told us most people are off the mark. But oh, no, not my hubby. He placed them (from memory, he said!). Askren got out his tape measure, marked me up and was amazed. Andy had placed the tabs exactly right! (And I thought he had early Alzheimer's!) That's some memory. A nurse told us one patient pulled out red nipple tassles and put them on. When the doctor came in, he got quite a laugh. I wish I'd thought of that, but then I would have had to find those tassles!
   You're awake during this surgery, but Dr. Askren said they would cover my face, so I wouldn't be able to steal his secrets! I don't want to know how he does it, but the end result is amazing!
   The surgery took about 40 minutes. He numbed me first, but I could feel tugging and pulling as he worked to create the nipples. A lot of snipping as the nurse cut the thread as he stitched and stitched.
   Then, it was up and out of there. Dr. Askren warned that the nipples would look huge, and they do, but they'd shrink down to normal size. He cuts a small piece of the top of a syringe and places it over the nipple to protect from bumping. Now, who would have thought of that?
   It's all so amazing; you have to wonder who came up with this methodology. There's some pain after, but nothing worth complaining about. And I can't walk too fast or I feel it.
   I'm bandaged up to protect it all, but when I first took the bandages off and looked in the mirror, my only thought was: How the heck did he get my skin to stretch and work itself into that? It actually might have been interesting to watch, because it's far too hard to believe. It's a miracle of sorts. I guess Dr. Askren is right: It's an art.
   Now, we wait again for the swelling and nipples to heal. Next stop: My first tattoo!

Up next? Nipple origami

   Tomorrow I head into another surgery, this one minor, to rebuild my nipples. It's an odd concept to begin with; the thought that plastic surgeons can even do such a thing.
   They call it origami, yes, like the paper origami animals you learned to make as a kid, though this time we're not making swans. I'm not really sure how they ever came up with this concept, but it's far better than earlier alternatives, which I won't even go into here, because it's just too crazy to even think about. And probably most women just avoided it.
    Today's methodology is fascinating. Somehow, Dr. Askren will cut my skin, do some tucking and manipulating -- and fashion a nipple. It's an art (his own words) and I'll bet it is.
   It requires only a local anesthetic (I could drive myself home, the nurse said, but she'd rather I bring someone). What I can't imagine is being awake and aware during the process. What if I have an itch? What if I move? Will the good doctor be talking to me as he performs this intricate procedure? Will there be a mirror so I can see what's going on? Do I really want to see? While I'm fascinated that they can even perform such a feat, I'm not sure how I'll feel while it's going on.
   Dr. Askren prepped me for what part I'd be involved in. When I enter the surgery center, they'll give me two round tabs (like the tabs they use for an EKG) to place where I think my nipples should go. Then, he said, he'll come in and place them where he thinks they should go. Guess who wins?
   I'm totally confident he knows what he's doing. After all, it is an art and he's a perfectionist. So I'll leave it in his trusty hands.
   I'll let you know how it goes. Hopefully, the doctor didn't overindulge this holiday weekend and I won't end up lopsided!

Capping off graduation

   A big sigh of relief.
   My daughter graduated college in mid-May back East. The trip required the lengthy flight, followed by swelling of my arm and hand, packing up 19 cartons and shipping them back to Cali by mail, loading up the car with the essential items (snowboard, saddle, boots, electric guitar & amp) and shipping it via auto trailer. (I'd pay the price upon return home with extra visits to the lymphedema therapist.)
   And then finally, graduation.
   My daughter, who has always had a need to be different, decided she'd decorate her cap for the outdoor graduation on the campus front lawn. To my surprise, when we went to Michaels to get the necessary supplies, she immediately gravitated toward pink rhinestones and a pink glittery breast cancer ribbon. Nothing else even occurred to her.
   I couldn't have been prouder. I have to admit I was a little nervous about whether the school actually would allow the decorating of caps, but she didn't care. "Mom, I can't imagine they wouldn't let me walk just because I put this on my cap. After all, I'm doing this for my Mom!"
   And sure enough, she walked, graduating summa cum laude (much to our surprise and hers!), and standing out amongst the sea of graduates in a glittery cap and gown.

Wow! A mom who has survived breast cancer couldn't be more proud.

Back to physical therapy

   I'm going back to physical therapy Monday with a lymphedema specialist. Lymphedema is unfortunately one of those things you never really conquer. It's a result of the removal of lymph nodes that had cancer in them during my bilateral mastectomy. I went through months of it after my surgery just to be able to lift my left arm up. I went through all the wrapping of the arm, the sleeves, the night sleeves. I've got a plastic box full of stuff.
   This time, it will be different.
   I've had pain in my left side, just to the side and bottom of my breast, for a few months now. Once I lay down, it's difficult -- and painful -- to get back up. Something's going on with the muscles used for this type of movement. A shot to relieve the pain would only help temporarily. So Dr. Perkins is sending me back for some physical therapy to see if it will help relieve the pain. It's almost like the difficulty I had after the mastectomy, lifting the upper portion of my body.
   When I told Dr. Askren that I was going to do this, he said he was sorry he didn't think of that himself. He knows if anyone can help, it will be this particular therapist.
   They tell me Julie Cash works miracles.
    I'm counting on it.

Yet another good doctor

   When my oncologist, Dr. Chris Perkins, recommended I see a dermatologist to ensure I didn't have any skin issues going on, I wasn't happy. This was a suggestion during my routine 3-month checkup. But good dermatologists are difficult to find in Fresno. Believe me, I had tried before and wasn't happy with what I heard about any of them, except for one.
    I stalled for awhile. Probably a couple of months. At my next visit to my plastic surgeon, Dr. Carl Askren, I told him I needed a good dermatologist. He recommended the same doctor everyone recommends. Dr. Tashjian. That's who he'd go to. I told him I had already tried to get in to see him, but they had informed me he wasn't taking on new patients.
   Dr. Askren offered to see what he could do to get me in. Within days, I had an appointment. This is what good doctors do for you. They work with you and for you.
   Of course, my luck being my luck, he found some pre-cancerous spots on my nose and I've been going through some minor treatment that's only bad in the way it makes you look for awhile. A red nose full of spots for a couple of weeks followed by some cortisone treatment. It's been about 3 weeks. I still have the spots, but they are slowing disappearing.
   I will tell you he's, without hesitation, the best dermatologist in town. He spends time with you. And as everyone knows, you'll never get in at your scheduled time. They have the call-ahead plan, which works just fine. But I'd rather wait and have a good experience, than be rushed through an exam that leaves me feeling like I never really saw the doctor.
   So, I've happily added another good doctor to my list of great Fresno physicians. And I've taken care of what could have been another bout with cancer.

No boobs, no asthma!!

It's that time of year when my asthma usually kicks in, I can barely breathe and I end up with a hacking cough that sounds like I have the croup. It lasts for months on end. I usually end up at the doctor with walking pneumonia at some point after I'm forced to go to the doctor by my husband, who can't stand any longer to listen to me cough like I'm choking to death.
Well, no more. Thanks to my bilateral mastectomy, it is no more.
No more breasts, no more asthma.
What an incredible solution. Who would have thought it so?
I swear that when I went in for my bilateral mastectomy last February (2010), I was clutching an inhaler. I'd been told by the doctors that I could not be coughing like that during surgery, so I took my last puff before they put me under.
I haven't had to use an inhaler since, knock on wood. Nor have I had to take my twice-daily inhale of my Advair inhaler. I do still take my daily Singulair and my daily Claritan and I still go for my allergy shots every other week, but I was doing all that before the surgery, too.
What on earth was this all about? I sort of made a joke of it when I went on my more-than-regular doctor visits: "Hey doc, you're not gonna believe this, but ever since they cut off my breasts, I don't have asthma anymore??" Mostly, they were shocked.
Finally, my oncologist suggested it might be that the hormone blockers I'm now taking have some steroids in them that might be compensating for the inhaler action. Aha!! Say it's so!
So, if you live in this polluted Valley of ours, I now have the solution. Breast cancer, a bilateral mastectomy, months of chemotherapy, and viola! You may rid yourself of asthma.
But no, I wouldn't recommend this remedy to anyone, not even my worst enemy (I'm not sure I even have one of those!). But I have to say, it's worked wonders for me!

The Art of Life in calendar form!!!

California Oncology of the Central Valley proudly presents

The Art of Life™

2011 Wall Calendar

featuring 12 works of art by women cancer survivors in celebration of LIFE

$20/ea or 2 for $30

*All proceeds benefit The Art of Life™ 2011 Project: COMING SOON!*

Calendars are available at California Oncology’s Front Desk

(6121 N. Thesta,

Ste. 205

near Bullard/41).

Reserve yours today by calling 559.438.7390

or email jenelle@california-oncology.

A great gift for family, friends

 and co-workers!

“What a wonderful surprise to open such a powerful, creative Art of Life calendar from California Oncology!

  The concepts of the women are so intuitive ... awesome really.  Each month captures such a different Spirit.  Aren't women absolutely amazing? 

Especially in the face of crisis and fear .. so often our strengths seem to shine even brighter.

 I am walking through my own cancer journey, but every time I look at this calendar I am reminded that it is going to be a GREAT 2011.

Thank you for giving me the gift of HOPE!”  -Mari

 

 

A year later the memories are clear

It was just a year ago that I went in to the hospital for a bilateral mastectomy. It seems like ages ago. I remember it clearly though, every detail.
My husband's aunt, my friend Jeanne and my husband went with me. My surgery was in the early afternoon and I was expected to go home the next day. Hard to believe, huh?
The plastic surgeon arrived first; we had to wait for the breast surgeon. Four hours, they told us. It ended up taking closer to 5 hours. By the time I actually came to, much later that evening, I didn't know what hit me. They were pumping me with morphine. I couldn't move. I was pretty much out of it. I recall my husband telling me everything went well; that was it.
That first night was the worst. I couldn't get out of bed myself, couldn't lift my upper body. I remember the call button fell to the floor and I struggled to get a nurse to come in to help me. I remember yelling Help over and over until someone finally came in to assist me so I could go to the restroom. I remember the constant noise all night long in the hospital, paging of nurses, the constant interruption of sleep for one thing or another.
I was more aware the next day but still groggy. My husband told me the surgeon found cancer in my lymph nodes and had to pull several, but the cancer cells were dead from the chemo. She wanted to be extra careful so she pulled them out.
I was afraid to see what I looked like. So I really didn't look. The surgeon came in and said there was no way I was ready to go home. My husband thankfully handled the insurance issues that arose from adding an unexpected day to my stay. The nurses forced me to get up and walk...and walk I did. It was painful, but it was the only way I could get home.
The food was awful. I couldn't eat. Jeff and Jeanne brought me a cup of Marble Slab ice cream and I was forever grateful. Unfortunately, it pumped up my sugar level causing the nurses to want to shoot me up with insulin. I explained that I'd eaten ice cream and didn't want the shot! Thank goodness they backed off.
A good friend had somehow persuaded the powers at the hospital to give me a private room. That was a real blessing.
In all, I was grateful to have friends and family around. Going home was tough. My muscles were useless. I felt helpless. I couldn't get up and down for days without assistance. My husband's aunt was here to help and she would pull me up by the back of my pajama pants. What fun!
Looking back now, it seems like it was years ago. So much has happened since. I'm grateful that I had great friends to help me through this tough time, those who visited, brought food, brought fun and laughter to an almost surreal situation.
Today, I look "normal." You'd never know that I went through all that. But boy, do I remember it all...

Fear of ballooning

I'm about to make a cross-country trip via airplane. It used to be fun. Now I've got to wear support hose, lymphedema sleeves on both arms and a lymphedema glove on one hand. As if I don't sweat enough at my age!
Lymphedema will be with me forever. Most days I can't get my watch on my left arm and it's been over a year since I've been able to comfortably wear a ring. I can actually see myself blow up if I do too much with my left arm.
But flying makes it worse. I have to be extra careful. So I'm pulling out the sleeves, the glove and the stockings and off we go. Wish me luck!

Massage, massage, massage

Now that I have had surgery on my right breast again, the key to success, according to the plastic surgeon, is massage, massage, massage---all in hopes of keeping any scar tissue from taking over again. So I do. I massage in the shower, I massage before bed, I even massage while driving to work in the morning. I just have to be on the lookout for large SUVs that might come up alongside me....I hope it works this time.

Am I really an extraordinary ordinary hero?

I was taken by surprise a few weeks back when my niece's daughter called me at work. She told me she'd chosen to write a school essay about me, in which they had to choose someone they considered their hero to write about. She chose me. I couldn't believe it. I was really taken aback. We don't see Carly often. They live in New Jersey, not far from where my daughter goes to college. Maybe we're there once a year now, but we talk often on the phone and Skype when we can.
She only wanted to read the essay to me over the phone. It brought tears to my eyes. It was the sweetest thing ever...
I've copied it here to share with you. Really, all women who have suffered and survived the turbulence of breast cancer are heroes. Remember that as you read this, she's not just talking about me; she's talking about you, too.

My Aunt Valerie... A True Hero

By: Carly Decker

          Not many people my age already know their extraordinary ordinary hero of their life time.  Well, my hero is my Aunt Valerie, a survivor! She overcame breast cancer. My aunt is my hero because she has stayed determined, optimistic, and courageous with her breast cancer treatments. Therefore, her survival has been an inspiration to others!

          Why is my Aunt Valerie courageous? Aunt Valerie experienced five surgeries so far, and is expected to have more. Also, she went through six months of chemotherapy which caused her to feel sick almost every day. Additionally, she shaved all her hair off before the chemo caused it to fall out,and wore wigs in public facing the opinions of those who know her. In conclusion, my Aunt Valerie is a very courageous woman who has experienced very hard times and made it through due to her courage.

          “ Don’t worry, I will get through this,” Aunt Valerie said as she told us for the first time she had breast cancer. She was determined already! Aunt Valerie did what ever it took to improve. She was willing to get as many surgeries as it took to get her body to become better than ever. She even flew cross country because she didn’t want to miss her nieces bat mitzvah , even though doctors didn’t recommend it. She was very determined not to let breast cancer take over her life!

          “Oh, I got my wigs today! Should I be a blonde? Should I be a brunette?” she asked laughingly as she skyped us, showing us how she looked in her new wigs! When my Aunt Valerie called us on the phone telling us she shaved her hair and received the wigs, the first thing she told us  was that she wanted to show us her cool wigs! Also, when we spoke on the phone, she always told us she felt great and then my uncle told us the real deal when she wasn’t around! She feels her mind controls her body. When she thinks she doesn’t feel well, she doesn’t. When she wants to feel better, she believes she has to think it first! Therefore, she continues to think optimistically about how she wants to feel, hoping it will make her cancer improve, and it has!

          Unquestionably, my Aunt Valerie is a survivor of breast cancer. My aunt is my hero because she has stayed determined, optimistic, and courageous with her breast cancer treatments. I am so proud of her that she didn’t give up to a terrible disease. She has taught me never to give up on yourself. I love my aunt very much, and I am so happy to name her my extraordinary ordinary hero!