Happy Halloween!

Pink Ink…

I’m baaaack! Did you miss me? Thanks to Lori and Michele for holding it down!

It has been a busy month, and I have had the privilege of doing several breast awareness events, from interviews, to fashion shows. I’ve got a month’s worth of posts just from these experiences! Not to mention the Race for the Cure, renewing my vows, and my Mayo adventures!

But I wanted to put my toes figuratively back onto the Inkwell, with a light post! A brief trip down memory lane! Don’t worry; it’s not what you think!

A year ago today, I shaved my head! Yup, on Halloween, I gathered Big and Lil B together and before we went trick or treating, we busted out the clippers. It was actually a fun way to lose my hair. A year ago, I wrote that “it’s just hair”. I believe that even more now! My hair has been growing in since April. But instead of letting it grow back, I have been cutting it periodically. I actually miss having little to no hair! It is so much easier. People keep complementing me on how it’s growing back. I hate to disappoint them that there is a real chance that it will be gone again soon! Lil B in particular is begging me to grow it back. She wants to “play in it”. But alas, no! So here’s a quick look at my HAIRstory!

Day b/f chemo starts

Big B gets to work!

Done! Headed 2 trick or treat!

1st real debut of the baldy!

MEDICAL MINUTE:
The other reason I have been a little distracted is that there are “things” growing in my lung. Originally, there was some discussion that they were just scar tissue spots. But last week we found out that that is not the case. It is indeed “something” because they are growing. Possibilities are lung cancer or some kind of master infection. Either way, my doc says,…”it’s something”. So tomorrow I head back to Mayo to get cut again.

Left side=now. Right = August


The big blob is my kidney…or liver next to my heart.(?!) (Hey! Don’t judge! I’m a lawyer! lol). Ignore the blob. Look at the little dots on the left, below.

The good thing is that I feel fine.

But, I am tired. I am tired of being cut. I am tired of waiting for the 15th shoe to fall. I am tired of having to share this kind of news. I am tired of being the poster girl for “My life is a Lifetime Movie”. But I guess this is what God’s plan is for me, to fight and share my story! Big B is floored. He had convinced himself that this what nothing because really, how much more could we endure? Plus, he kept saying I look better; I look healthy. For the 1st time, we have chosen not to tell Lil B. Our story is that it is just more testing. So technically, not a lie. When the time comes, and we have news, then we will share. I cry at that possibility.

People have begun to ask me again “what can I do?” Truthfully, there is nothing to do. Just pay attention to your own health. Yes, you may have done your mammo, but did you do a self-exam? Did you do 30 minutes of exercise today? Yes, I know. Life gets in the way. But take it from one whose life is hanging on precariously. You still have life. Make sure you value it.
Ok that’s my lecture for the day! I’m back and more posts to come! Don’t forget to check out http://www.pinkwellchick.com!

Happy Halloween!

Keep swimming (seriously)

Pink Ink…

Why me?

Why NOT me?

Seriously?

These are the questions that have traveled back and forth across the phone lines between Red Ink Michele and me the past few weeks. There have been some tears. Ok, a lot of tears, as we have had a particularly challenging month with my “nephew”. (Not to mention my 3rd degree burns!) On more than one occasion, we have asked each other, how much more can one child take? How much more could WE take?! We all know the phrase “God only gives you what you can handle”. But when you are “handling” it, when you are “up in it”, that phrase doesn’t bring comfort!

Mother’s Day has come and gone. Happy belated Mother’s Day! It was a challenging day for me. It was my plan to write a wonderful, positive blog for the day! It didn’t happen that way. In fairness, my family gave me a wonderful and relaxing day. I got a million and one emails, calls and texts. People around the country recognized the significance of this particular Mother’s Day for me. I had MADE it to Mother’s Day! That was a milestone! A milestone that was not lost on me. So while everyone was celebrating, I was lost in my thoughts. I spent the day thinking about my mom. I knew this year was difficult for her because she couldn’t “fix” me. I am sure she felt helpless at times. I shared with her that one of my friend’s mother had admitted to asking “why not me”, when my friend was diagnosed with Cancer. My mom quietly said she thought the same thing. Wow. I thought about my baby girl. How many more Mother’s Days would I have with her? What would Michele, and Carla tell her about me? Would I be able to see her become a Mom? Finally, I thought about Michele and the fact that no matter how hard we work to protect our children, stuff happens. So my Mother’s Day was one of happiness and heaviness. But we keep moving. We keep swimming.

Medical Update: I am healing slowly but surely! I am not wearing wound covers anymore! There are parts of my breast that are still “down to the white meat” as they say. No chance of a bra anytime soon. Still swollen and sore. I am definitely bleeding in spots. But it’s better than it was.

Last week I was shopping for a dress to go to a summer black tie event. The challenges I faced were that I still have Frankenstein scars, I have a burnt “box” around my boob, and fabric irritates the skin. So I needed a dress that covered all that. But it’s 105 degrees here! I also needed something that would be cool. I thought I had found a dress. It looked and fit great. But then, my Shopper and I realized…that my nipples were asymmetrical! Yes, you read correctly. My radiated boob was still so swollen that it sat higher than the other one. It was bad enough that the nipples were showing through the material. But to see them at a diagonal was a bit disconcerting! The Shopper suggested wearing nipple covers. But alas, the last thing I wanted on open skin was adhesive. Back to the drawing board. I did eventually find a dress. It was comfortable and hid all my issues. But as we were sitting at the dinner Saturday, I started feeling a little wet in my dress. Now, I had gotten permission to try and wear anti-perspirant so I wouldn’t sweat all over the place. So I was a little taken aback. Perhaps I was just having a hot flash. (Yes, I still get those!) I excused myself to the ladies room, to wipe what I assumed was sweat. No, It was blood. My breast had sprung a leak! SERIOUSLY?! Does it never end? Fortunately, it was not enough to go through my dress, and the evening was coming to a close. What a night!

Sunday, Michele and I spoke before bed. Both of us probably sounded crazy because we were so tired. Another weekend done. All we could hope for was a week with no twists or turns. Before falling asleep, I broke out my affirmations that Lizzie sent me . One spoke to me.

“I am in the right place. This present experience is a stepping stone to a new awareness and greater glory.”

I certainly hope that is true! Either way, we are going to…keep swimming! (Seriously)

Breathe

Pink ink…

THREE!

Three radiation treatments left!
Third degree burn!
Three part post.

THREE RADIATION TREATMENTS LEFT!

ONE: SCENE: Radiation Girl (“RG”) is spending the day at the Science Center with her daughter and friends. While approaching the elevator, they come across a 3-year-old boy, his dad and his 2-year-old brother. As RG comes closer to the elevator, 3-year-old grabs his dad’s hand, and looks on in fright. He inches even closer to his dad, as RG stops at the elevator. “Are you looking at my head?” RG asks him. He nods his head. “It’s ok. I know it looks funny. It fell out but it’s going to grow back.” RG explains and smiles. His dad smiles with gratitude at RG. Elevator comes. RG’s group gets in. 3-year-old won’t move. Will not get in the elevator with RG. “Don’t worry, I won’t take your hair!” says RG (was that mean?!) RG’s sorority sister turns to the little boy… “Or will she?” (definitely mean!) FADE TO BLACK Hilarious!

After 5 hours @ the Science Center, Lil B and I came home only to turn around an hour later to go to the Rib and Music Festival! Yes, you read correctly! Big B packed us up, and we drove 45 minutes to a Rib Festival..in Arizona! It was great! Really funny, since we don’t really eat pork. But we did that night…and it was good! Fast forward 3 hours and we are pulling into the garage. Lil B trips on the stairs going into the house. We spend the next 2 hours in the ER. She now has a soft cast on her foot.

No, it doesn’t stop there.

1am. I am throwing up. Yup, the ribs. Thankfully, I kept all that Zophran! I popped one, and by 2:30 I am sleep!

Not done yet.

Sunday was uneventful. But at 1am Monday morning, Lil B starts throwing up. So no school Monday. Fast Forward. She has Norovirus. Picked it up at the Science Center. Or the Rib Festival. Or the ER.

You can’t make this stuff up!

TWO: Brief Medical Minute. I am in my last week of Radiation therapy. It is the “extra boost”, I mentioned. They’ve added an attachment to focus the radiation on the area where all my cancers were. Meanwhile, I am suffering from 3rd degree burns. What does that mean? I can’t wear a bra at all. I walk around without a shirt whenever I am at home. The skin is peeling off under my arm. Once again, I can’t lift my arm very far, for fear of the skin tearing. The medicine they prescribed costs $42 a tube. I need 3 different tubes. Again, I have good insurance, and can pay the extra $. What about the poor people who are scraping together the $ for treatment and can’t get the cream? I am here to tell you that $2 aloe vera or hydrocortisone is NOT enough.

On a lighter note, my hair is growing back…under my arms. BUT, I cannot shave! It is too close to the radiation sight, and my skin may tear! The poor radio-techs have to look at the hair every morning! LOL Looking forward to shaving and waxing! Someone asked how the crystal deodorant is working. It is actually really good. But it is NOT an antiperspirant! Given that it is averaging 98 degrees here, that is a problem.

THREE: When Red Ink Michele and I started this blog, it wasn’t really about the breast cancer lane. Our thought was it would chronicle 2 friends “of a certain age” going through various mid life twists and turns, and how we handled the journey of lifelong friendship. It just so happens that the twist of breast cancer kind of “took over”, and directed our journey. As so often happens, this weekend I was reminded that life is happening at lightening speed all around me. A friend back east passed away after just being diagnosed with breast cancer…in January. When I got the news, I must be honest. It scared me…a lot. Another friend revealed she might have a different cancer. A 3rd friend is having some major health issues with her child. It took my breath away. But then I was guided via Twitter, to a blog posting of one of my best friends, T. Marie, entitled “The Joy of One Simple Breath”. (see http://www.bythespirit.net). This particular sista-friend I have known since high school. Same College, same Sorority. She has provided me with so much over the years. This weekend was no different. She doesn’t even know her words affected me. It was, and is, exactly what I needed to read. In part, it said…

“Remember to breathe today. Use the joyous life cycle of one deep, conscious breath to return to the present moment; the space where Spirit dwells and your divine and creative power thrives. When in doubt (or fear, or confusion, or anger, or unforgiveness, or pain, or hate, or judgment or [insert constricting, limiting thought or emotion here]), stop and take a breath!”

So, I have 3 more treatments to go. “Life” is still happening all around me. I may be “burnt up”, praying for others’ strength, and taking care of a sick 9 year old.

But I will remember to…Breathe!

Keep talking

pink ink…

This week I attended the Phoenix Susan G. Komen Affiliate Promise Luncheon. It was a time for us to recognize the Grantees. Our Grantees provide innovative breast health & breast cancer programs to the medically underserved, uninsured, or underinsured here in AZ. It was emotional as I heard story after story about women who otherwise would not have had access to treatment but for these programs. When asked what women do who can’t afford treatment, the response is that they “quietly die”. Wow! Again, so thankful that I have insurance. As a Board Member, and now a person in the Cancer Lane, I re-dedicated my promise to educate, advocate, and support others.

Side note: Our Affiliate was named Affiliate of the Year out of over 100 affiliates around the world! AWESOME!

Now join me as we take another break for a … real talk MEDICAL MINUTE! I promise it will be brief.

I am finishing my 4th week of radiation! Yay! Remember, radiation is used on the breast to stop any other cells from dividing and growing. When we talk about the cost of breast cancer treatment, here is a little nugget to ponder. My portion of my treatment PER DAY is $584. Now let me remind you that I have to have 30 treatments. You do the math. Let me also say that the last week of treatment will cost more because it is a more intense “dose”. Yes, I have great insurance.

As I’ve mentioned, radiation can definitely affect the skin. Mine started changing colors about a week and ½ ago. It is hard to tell in the picture, but it’s several shades darker than the other breast. It is also spotted. Or, as Lil B says, “speckly”. It can be very sore at night, or when I have worn a bra too long. What is more irritating is the itching! So now I am putting on aloe vera for the burn and cortisone for the itch. Fortunately, I have not lost movement in my arm. I am diligent about going to the gym or working out, every day that I get zapped! Trust me. That is a challenge. Again, the cardio is getting easier. But I still have little to no muscle tone or strength in my arms. I am only lifting 3-5 pds, and doing things like curls and arm circles. I have become one of those women I use to look at and say “Really lady? What is that 3 pd weight doing?” Oh how humbling the Cancer Lane is. (You see I still have a Frankestein scar on the other side where they took out the PORT! My Doc says my skin has changed from the chemo, so it is going to take…a while..for scars to go away.)

Yesterday, I was “fitted” for my boost treatment. This is the “extra strength” treatment that I will receive the last week of radiation. Women who receive this more concentrated dose of radiation are 2x more than likely to be cancer free 10 years after treatment! Sign me up! The down side is that the chance of scar tissue developing increases, along with swelling, redness and tenderness. Anyway, there is a special attachment to the machine to concentrate the beam. To “fit” me, they drew all over the breast and made measurements to figure out exactly where my crazy cancer liked to hang out. Then they took a picture for their records so they can compare it when we actually start. So I took one too! Then they told me…try not to wash off the marker! Seriously!? Let’s just say…”ummm…ok”! (side eye look!) The dots are the markings to direct the beam. The rest…surgery scars. Please note the second scar (the 1 on top) from my most recent surgery that removed the “new” cancer”. So Pretty! Red Ink Michele asked me about sharing such a shocking picture. But this is real talk, real life. The more we talk, the less fear we will have.

So there you have it. Welcome to Radiation 101, the abbreviated version. I’m surviving, tired, burnt, and with no appetite. But surviving!

And I promise to…Keep talking!

Happy ending

Pink ink…

I’m back!

It has been a crazy 2 weeks. There have been all kinds of highs…seeing friends from Chicago and Philly, Lil B getting straight “A”s AGAIN, and 90-degree weather. I went to my 1st Komen Board meeting since my operation! But, also all kinds of lows. I just couldn’t easily dismiss being told that the doctors found a whole bunch of new cancer, (I could actually die from this!) seeing Big B really scared for the 1st time, or being told by a good friend to get control of my health. (Seriously?! If I weren’t in control of my health I would already be dying!) So I went into kind of a hole. We needed some time. But, after I ran into a friend in a restaurant who asked when I was going to blog again, I figured I had to get back on the proverbial horse! So here I am!

A lot has happened since then. Three distinct things have marked my time “away”.

Most important, I started radiation!

Medical Minute: Radiation is basically the micro attacking of cancer cells. Chemo attacked the entire body. Radiation highly targets the breast tissue where cancer was found. It reduces recurrence by approx 75%. Clearly, I need it! The side effects are fatigue (of course), armpit discomfort, sunburn like side effects, lowered white blood cell counts (again!) and possible lung problems. Some other interesting facts. .. I can’t wear regular deodorant. Did I mention it is 90 degrees here? Actually, there has been great research that suggests that the aluminum in anti perspirant may cause breast cancer. Maybe no deodorant is a good thing. So I am wearing natural “Crystal” deodorant, like they do in Europe. It can be found in Whole foods, or Walgreens. So far so good. My family hasn’t told me I stink yet!

My radiation plan calls for 30 treatments. Five days a week, for 6 weeks. I have made it through 6 days so far! The whole process of checking in, getting undressed, zapping, etc takes about 30 minutes. But the zapping itself takes about 2 minutes! My treatment also calls for me to wear a “Bolus” on top of my breast. It’s a rubbery material that is used to ‘fool’ the radiation beam so it will deposit the maximum dose on the skin surface instead of a fraction of an inch deeper. That means I will definitely have some skin irritation. My skin is already beginning to slightly turn colors. It is also getting a little tight. So I am doing arm exercises so the skin won’t pull too much.

Second, I FINALLY got out my port! Yay! That means that at the moment they don’t think there will be any more chemo for the time being! It did mean more surgery. But it was quick. Big B got to watch it this time. Kind of gross, but at least it’s out. Alas, I have one more Frankenstein–like scar! LOL

Finally, Big B and I had numerous interesting conversations with people who seem to have recently “re-discovered” that I am fighting breast cancer. Once people heard or read that the doctors had found more cancer, we started receiving calls etc, like we did when I was first diagnosed. A lot of folks we hadn’t heard from in months. People also wanted to “lay eyes” on me. What we observed these last couple weeks was very insightful. It seems that the prevailing thought of several people was that:
1) Breast cancer isn’t “as bad” as other cancers.
2) Once a person has a mastectomy, they “are fine”.
3) Because I am out and about, we aren’t in fact, in the fight of our lives.

We got a lot of “I didn’t realize it was that serious”, from people whom we have only heard from once or twice over the past few months. Others admitted when they heard that there was more cancer, they ignored it, didn’t process it. (I understand that! It took me 2 days to truly “hear” it!) Some didn’t even acknowledge this turn of events and talked about other things. B also got “Wow, Barb doesn’t seem that sick”. You never know what will be the tipping point for a caregiver or spouse. This period was one of the few times that Big B has actually gotten angry. He had to tell close friends and family that he could lose his wife and that the best way to support us was to be more “present” in this fight of our lives, to take it a bit more seriously. It was a tough time for the both of us. It also provided us another learning moment about people’s perception. But we GREATLY appreciate all the friends, near and far, who surrounded us with love and prayers, notes and calls, when they heard this new news!

Ironically, Giuliana and Bill’s reality show resumes on the Style network, Tuesday evening! This season will focus on her battle. Another parallel…turns out, when she received her pathology back after her mastectomy, it was worse than the doctors thought. BUT, she is not going through chemo. She is taking oral meds instead. (Will have to research that!) So no shopping for wigs, no Zophran, no black tongue. It will be interesting to see where her story leads.

My story is still being written, one day at a time. Breast cancer does, in fact, kill young people. This is not over, and it’s not easy.

But don’t worry. I’m still counting on a…happy ending!