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)

On my way

Pink ink…

What to do now?

That is what I have asked myself for the last 5 days, ever since finishing radiation. I’ve been asked this a fair amount of times as well. Believe it or not, it has been a very busy few days. The weekend was great! I was “forced” to celebrate being finished, with my girls. I’m so happy that they surprised me. I can honestly say, the importance of finishing radiation would have been lost on me had they not come. It’s just that I was, and continue to be, so burnt. The journey is not over. But having them here helped me to “breathe” and savor the moment. The only thing missing was “red ink”. Over champagne, we laughed. We cried. They asked tough questions. They shared their stories. We laughed some more. Once again, it was a time when we realized we are at a certain age, when “real life” happens, and you rely on your friends to get you through. Good times! One highlight of the weekend? Having Robin Roberts tweet me congratulations!

Monday: I woke up ready to go to radiation! Got dressed, and everything. Then Lil B asked me what I was going to do that day. I realized I had nothing to do! I giggled like a little girl! So I…went to Target! I know! It’s the small things! LOL. But I needed to get a whole bunch of skin products to help this burn! Then I realized I was just tired. Tired of running back and forth to Mayo. Tired of being burnt. Tired of trying to stay ahead of “what’s next”. So I grabbed a salad, sat outside, wrote thank you notes, and just chilled until Lil B came home. Oh, and I started my “Busting Breast Cancer Myths” week on Twitter! (@pinkwellchick)

Tuesday: Well my break from doctors was short lived! It was business as usual as I made my way to meet with my Oncologist. But 1st there was blood work to be done. This was also the 1st time I had been back to the breast clinic location of Mayo, since realizing that there was even more cancer. Truth moment. I had a moment of panic…or 5, walking back in there. I had to sit down and pull myself together. Put my game face on! But Big B walked me back from the cliff, as he always does. “Ok, let’s do this” I thought, as I walked into the doctor’s office. Big girl panties. Again.

So here it is in a nutshell. I am moving into “surveillance” mode. They will “watch” me like a hawk for the next 2 years. I have a higher chance of recurrence during the next 2 years. That means tests, exams, every 3 months. (As opposed to 6 months for other patients) They will be monitoring my lungs, liver & skeleton for signs of cancer. The term they used was “hyper vigilant”. Any pain I have, they want to know immediately. Great. (side eye!) Regarding my recovery, my blood work is looking ok. My white blood cells are still low & will be for a while. Basically, everything hits a low point in the 8 weeks after radiation. But after that, things will pick up. Lifestyle changes will be little to no milk, or beef. I need to focus on protein & Omega 3 rich foods. My doctor stressed getting my fish and meet from “Whole Foods”, which I loved to hear. Big B HATES when I shop there! Too much $, he says! But he heard it himself. So to Whole Foods we go! Yay! They don’t know if I will regain my “cycle”. Seriously? Who cares?! Lol. But those hot flashes? Yeah, they’re here to stay. At least for the near future!

Wednesday: LONG day. BACK TO MAYO!! Met with my Radio-Oncologist/friend Dr. Michele. In a nutshell, my burn is progressing as expected. The boob is pretty jacked up, but it will eventually heal. No chance of surgery to replace the expanders until mid fall!! I was a little freaked out b/c my skin is so jacked that the scar from my mastectomy has burnt off. Literally, you can’t see it. So I have a scar on one breast. None, on the other. Say goodbye to symmetry. Dr. Michele wanted me to make sure I said that it is NOT NORMAL for someone to burn this bad. She stressed it 3 times, so I wouldn’t scare folks too bad! People burn. Just not this bad. Got it! Well of course my experience is worse! What else is new!?

Best part of my day? Spending the afternoon with my girl who was just diagnosed. She flew in for 5 hours. She’s having surgery in 2 weeks. No tears! It was a manic afternoon! We laughed…a lot! I mean, we have 25 years of friendship on which to reflect! In “true friend” style, she asked me when I “got thighs”? Unfortunately, that happened @ 40! She said she was worried that I would be a “stick figure” from all the treatments. Well, no. I am that chick who didn’t lose weight during treatment. Of course I am! (side eye!) They say my body was holding on to the weight to fight the disease, and that’s good. Yeah yeah! Whatever! Anyway, we did talk a lot of what was to come. But our stories will be different b/c she isn’t having chemo or radiation. It was educational for both of us, as we shared our fears, concerns, types of cancer, the reactions of others, and different roads to recovery. There was also lots of laughter about the dumb things we did when we were younger. Good times! Most important, we both look forward to Homecoming in October, and being cancer free.

As I close out the week, I move towards healing myself on all levels. I remember the poem that I said as we rang the bell of completion, and say:

“My treatments are done.

Its course has run.

And I am…on my way!

Thanks

Pink ink…

ONE!

One radiation treatment left.
One Prayer.

ONE RADIATION TREATMENT TODAY!

Last night was a tough night, as the burn continued to…burn. Many people have asked if I am happy that it will all be over soon. “Of course”, I say. “Will you celebrate?” “Of course” I say. But the truth is that I can’t imagine celebrating right now. Trust me, I will be ecstatic that I will not have to make the drive every day. Thrilled, that I will not have to think of the $584 per session fee, everyday. Exultant, that I will not have to have deadly beams of light pointed at me anymore. But our journey is far from over. My body must heal. And from the looks of things today, and based on the nurse’s comments, that is going to take a while. Note the difference of just 2 days! I now understand why I may have to delay physical therapy for a few weeks. I now understand why I won’t have my final surgery until the fall. So celebration is still a little ways off. But blissful I will be.

Today is National Prayer Day. As I have said before, faith is personal. But, over the months, I have been blessed with the many prayers of others. I feel blanketed in the love that is the root of these prayers. (Does that make sense? It does to me) I am thankful that we have made it this far. I am thankful for the doctors that have worked me on. Thankful for my family and friends. Thankful for life.

So today, my prayer will be of…thanks.

Whole

Pink ink…

TWO!

Two radiation treatments left!
Two affirmations needed today!

TWO RADIATION TREATMENTS LEFT!

Today I woke up in pain. Pain I haven’t felt in a long time. Pain that brought me to tears as I sat up. Pain that brought more tears in the shower. Pain that brought tears as I was fixing Lil B’s breakfast. The skin under my arm had officially and fully cracked open. It hurts every time I move my arm. It hurts when I don’t move my arm. Big B rushed to get me pain meds. But at the end of the day, I know I am going to hurt for a while. In fact, for at least a week after radiation stops! This pain brought back to my mind the pain I felt after my surgery. Pain, I had managed to place in the same box where we, as women, put childbirth pain. You know. The box marked “Forgotten”!

I made my daily trek to Mayo for my 27th zapping. As I lay there, the techs adjusted the covering, & more tears flowed. Even laying a sheet on my skin caused me to tear up. No yelps, or sobs. Just tears, that they gently wiped away. Finally, it was time for the machine to zap me. Only, it didn’t work.

Yup. It was temporarily “down”.

I lay on the table for the next 15 minutes as they tried to get the machine up and working!

Fortunately, Lizzie, my good friend in Philly had just sent me a book on affirmations. She was worried that I may think she was “kooky” for sending it. But I told her that these days, I need all kinds of affirmations to get me through. I read the book cover to cover. Today, I relied on 2 that had stood out in my mind.

ONE: I am taking the next step in my healing.
This helped me focus on the fact that this pain was actually a part of the healing process. It is a result of me FIGHTING cancer. This affirmation took my mind away from the pain. At least temporarily.

TWO: I listen to my body.
As the book says, “ I pay attention to my body & make the necessary adjustments. I give my body what it needs…to bring it back to optimum health. I call upon an inner strength that is mine whenever I need it.” Listening to my body led me to find not just one, but 2 cancers! I CAN do whatever it requires to get healthy and live. So while my physical body was telling me it was in pain, my emotional body was telling me, I will be better, stronger, faster. (Ok, bionic woman reference!)

I lay on that table and silently said those 2 affirmations over & over. While I did feel “kooky”, it allowed me to ignore the pain…until the radiation was done.

Next, I met with my Radio-oncologist, my friend Dr. Michele. She immediately knew something was wrong. Through more tears, I told her about the pain.

Yeah, the affirmations had worn off!

Next thing I knew, I was being prescribed more Percocet, topical meds were being applied, and finally, I was wrapped up like the burn victim I am.

On the upside, this morning AZ passed a bill that eliminates access restrictions to Breast & Cervical cancer treatment funds based on location of cancer diagnosis. Previously, a low-income or uninsured woman had to go to a certain location & be diagnosed there, in order to get treatment services. If she were diagnosed somewhere else, no services! Today that changed. That makes me happy.

Friday can’t come quick enough! This part of the journey will be done. I know that I will be one step closer to being healed and… whole.

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!