Love…pink ink

Pink ink…

Dear friend,

Yesterday was a tough day. I wish I had been there for you. Yesterday, you went in for a double mastectomy. I wore our common shirt in your honor! But you were 2000 miles away! I know you were scared, but resigned! I know I was! I wish I had been there to hold your hand. I wish I had been there to make you laugh at our crazy times in college. At our crazy times since then! But I wasn’t. Without a doubt, you were surrounded by love, near and far. Without a doubt, you had great doctors. Without a doubt, you made it through. I was told the Doc didn’t find more cancer! Awesome! For all of that, I am happy!

But, I am also very sad. Sad, because you had to have this life changing experience! Sad, because I couldn’t be there. Yes, that is selfish, I know. But that’s honest. I know the road ahead. Please know, I will walk this road with you! I am sad, because it brought back so many memories of my own journey! Some, I didn’t know I had! Today, I asked my Cancer Mentor why it brings me to tears every time I think of you lying in that bed, in pain, with your new body. She said it’s because I know the road ahead, and more important, because it’s someone I love. This, I know is true. My Cancer Mentor Tracey still helps me. Every day! And I will help you! This cancer lane changed me & Tracey. It will change you too. But, I will be there with you, every step of the way. After all, you were there for me!

This morning, less than 24 hrs after your surgery, your mom said you were comforting HER, with jokes, cards, and scripture! True “AC” style! 24 hours after surgery for me? Well let’s just say, I don’t even remember 24 hrs after surgery! So I know you are going to continue being a Rockstar!

So as I sit here, enjoying some well earned quiet time with Big B, I cry. But right now, at this moment, I cry because I’m happy! I’m happy because you are still here! Happy that WE are still here! Happy that we can create new memories with our new boobs! See you soon, my friend!

Love…Pink ink

Counting Blessings

red ink . . .

Today is a beautiful day! It’s also a good day. The sun is shining, birds are singing, I’m catching up on my work, all of my kids are at school, my husband got off work early and we had a nice breakfast together before I started my day.

Last night I woke up in the middle of the night thinking about so many things. I was trying to recall the last time that I’ve had a sustained feeling of being at peace. Yeah, well . . . given the events of the past year, I couldn’t really remember a sustained period of peace in the recent past. This morning though I decided that maybe it’s enough to settle for momentary peace – for a good morning! Perhaps stitching these good moments together will give me that sustained buzz that I haven’t felt in a while.

Barb and I have been talking more about normal things lately – last days of school, summer plans, dates with our husbands, and plans with our chicklets! We are cautious, but thankful for the normalcy whenever it comes. Settling in to a new normal, after your world has been rocked by breast cancer or by the illness of a child or a friend, is a journey back that can only be undertaken step by step, expecting a few stumbles along the way as you get your footing.

Hope you’re having a great day wherever you are, or even just a great moment. Encouraging you to savor it . . . I’d like to keep writing, but I’d better post this quickly before something interrupts my groove . . .

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)

Why Me?? – Why NOT Me?!

red ink . . .

This was a bittersweet Mother’s Day. I missed my own mother, who died almost three years ago. Why me? My eldest son just got out of the hospital a little over a week ago following a really scary episode where I could have lost him. Why me? Sweet, because he and my other beautiful children are still here. Sweet, because I held all of my children close at the end of our church service today. Sweet, because my husband of almost 20 years, tried his best to make the day special for me starting with breakfast, and ending with watching the series finale of “Desperate Housewives” with me. [Can you believe the show is actually over?]

My eldest son and I had a tough conversation recently when he asked why he has “so many” challenges. To be sure, he has more than his share – an early diagnosis of Asperger’s syndrome, a higher functioning type of autism; a more recent diagnosis of epilepsy; and a recent bout of depression about all of it and more. I shared with him that asking the question is perfectly normal, and that he owes himself a chance to just say that he wished that it hadn’t fallen on his plate. He didn’t do anything to “deserve” any of it, so why did it have to happen. It’s o.k. to cry this out to God, or to the Universe, but to get it out.

Barb and I never had the “Why me?” conversation. The closest we ever came was a conversation where she expressed momentary frustration because she’d done everything that she was supposed to be doing including eating right, exercising, etc. and — look what happened.

So today when I participated in the Why Me? breast cancer walk in Chicago with my daughter in honor of all of the people in my life who have been touched by breast cancer, most especially Barb, I found myself wondering again about that question – Why Me? As we walked, then ran, I wondered whether the walk’s founders should have called it the “Why Not Me?” walk because being in the company of so many survivors of every size, shape, age and color and of so many whose lives had been touched by breast cancer, I knew that the right question was “why not me?” instead of “why me?”

Unimaginable things can happen to any of us or to those we love, especially to us women, us moms. Our challenge is to ask the “why not me?” question, and then to get about the business of asking “what now?” This is what Barb did when faced with the bear that is breast cancer – and it’s what extraordinary moms do every day when facing with the winds in our lives. Happy Mother’s Day to all of you . . . most especially to pink ink.

Just keep swimming

red ink . . .

Sitting at a swim meet yesterday cheering my middle son on – every time a head bobbed out of the water somebody yelled “GO.” My son says that while in the water they only hear noise but believe me he knows that the cheering squad is in the house – when he comes back to the stands for a check in, a snack or a towel, he counts on the “good job” and smiles to get him pumped for the next race which he has to ultimately swim on his own. I’m watching and thinking about Barb’s journey and how many times I felt just like I feel now – a cheerleader on the sidelines.

So I was really shocked to find out that anyone was even actually reading “red ink,” let alone counting on me to tell the story when Barb was otherwise occupied. Sorry for letting you down. My goal in getting the blog started with Barb was to give her a place to get everything out and to let her know that I was with her each step of the way. In the beginning, it was easy to blog and be the outspoken cheering section. As the journey got more difficult, and the reality of our lives hit me, I kept cheering her on, talking to her almost every day, but I found it increasingly difficult to live out loud. Ironically, as my voice quieted, Barb’s grew stronger. As I think about it, that’s exactly as it should be. It’s really her story to tell. And tell it, she has – honestly, with great humor, passion, and humility – she has allowed us to share her journey. Mine is simply one perspective on her story, and many of you have your own perspectives to share.

So Barb, I hope you heard more than “noise” while you were in the water, but if you didn’t that’s o.k., I know you were happy to have your cheering section, and I’ve been honored to be a part of it.

As you continue to “keep swimming,” just know that your cheerleaders are always here ready with a warm towel, or an encouraging word when you need us!

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!

With you in Spirit

red ink . . .

I couldn’t be there today to celebrate with pink ink, in person – and it broke my heart. The plan was to go and surprise her – her husband set this up weeks ago…the reservations were made and the plane tickets were in hand. BUT my oldest son is in the hospital, so my heart is in two places – here in Chicago and there in Phoenix.

Despite her countdown posts, she’s actually been a little ambivalent about celebrating this “end” for the weeks leading up to ring of the bell signaling the final radiation treatment. I’ve been walking with her, step by step, cheering her along and insisting that she claim every victory.

We’ve both had some tough reminders over the past several weeks that there are no guarantees about what tomorrow will bring in any of our lives, so celebrating today and experiencing the true joy of those moments in our lives is absolutely essential.

I’ve gotta say, we have these moments every day and laughter is always a part of it . . .

Me: (calling her while leaving the hospital where I just admitted my son, having just read her latest post) OK, so really given the night I had, did I really need to wake up to another “scary boob” picture? Seriously, are you o.k.?”

She: I knew you’d want to see it! (lol) Really, who knew I’d have 4th degree burns on my boobs, and be wrapped up like a mummy. And why did the nurse say to me “you’ve got a long road ahead . . . seriously????

Me: Talk about bedside manner . . . it’s a good thing that I wasn’t there because you know I’m not in the frame of mind right now to be polite . . . have you heard of the song “I feel like slapping somebody today” by Ludacris . . .that’s where I am right now . . . on the edge, girl. (O.K. picture this — educated, preppy, mom and wife, actually feelin’ Luda)

Both: LOL

So we aren’t really “Laughing At Our Pain” like Kevin Hart, but we are certainly laughing through it – and crying through it, and getting mad through it, and holding each other up through it – but getting through it is all that’s important. That’s our every day celebration of this life that gifted us this friendship.

Signing off now, and raising my glass (champagne, of course) . . . with you in spirit (I know I’m not alone) . . . and one step closer to the beach . . .

More to come

Pink Ink…

Done

No more treatments.

DONE!

Well, we made it! I completed 30 radiation treatments! It seems like it was just a couple of weeks ago that I was making that initial drive up to Mayo. But I am officially done! All three Bs got up this morning and made the trek one last time. (I was so happy reading all the texts and emails I got wishing me well, sending me love, and congratulating me!) Ok, it won’t be the last time to Mayo. In fact, I have 3 appts next week. But it was the last time for the radiation dept!

We made the decision to take Lil B with us, because she went to the 1st treatment. And at the end of the day, she has been there with me the whole time. No secrets! So she was able to come in and see me on the table as they adjusted the machine. She was able to ask questions. She was happy. After it was over, we were able to ring the bell of completion! What a wonderful accomplishment! It took all I could not to cry. But I made it! In fact I did a little dance.

After we were done, we dropped lil B off at school. B said he had to make a stop at home before we ate breakfast. “Ok, whatever!” I said. “Do I have to get out?” “Yeah” he said. “Just for a minute”. And then it began!

There was a note on the door that started a scavenger hunt…for friends…from out of town! That’s right! On the front door, I was told to go to the office. In the office, a friend gave me a rose and a note that directed me to the next person who had another clue and rose! And so on! Amazing! My girls! Chicago, Philly, Phoenix you name it! AWESOME! Then we had CHAMPAGNE and cupcakes at 9:30am! LOL We sat outside and laughed for the next 4 hours! Good times. To top it off, Robin Roberts, fellow Cancer Survivor sent me a tweet congratulating me on finishing radiation! Again, AWESOME. So I am off to enjoy a weekend with my girls at one of our top resorts!

Trust me. There is…More to come!

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.

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