An Expiration Date

Pink Ink…

Quick update.  It has been a helluva 2 weeks!  That’s the nicest thing I can say about this time.  Big B and I have been in a daze.  We have cried more than we have ever cried.  I think I can now officially write or talk about every possible experience of having Breast Cancer!  Now I know what it is like to hear that cancer is in your blood and there is really nothing to do except manage quality of life.  I could write about this all day, but I won’t.  Here is the abridged version. (forgive spelling/grammar errors!)

Thoughts that have consumed me:

  • Most women live 1-3 years with this diagnosis.
  • What about my baby girl?
  • Big B and I have so much more to do! I can’t leave him! WHAT ABOUT HIM?
  • Will this kill my parents?
  • WHAT ABOUT MY BABY GIRl?

I could go on and on!  For a week, we thought about “lost dreams”, “lost experiences”.  For a week we didn’t sleep.  For almost 2 weeks we haven’t answered the phone. I have cried and cried for my B’s. Through all this, we had to keep a brave face for lil B because we didn’t know how to tell her. We didn’t know our plan.  So we would cry after she went to school or bed.  I would cry the few times I would talk on the phone.  But when she walked through the door, Big Girl Panties would be pulled up high! Off to a play date! Off to watch U of Michigan versus Northwestern! Off to an election night party!

Pres. Obama wins 2nd term!

But my baby is no dummy. She asked what was going on.  She said we were acting “different”.  Why the “hushed” phone calls with Mayo?

Again, I could go on and on.  But I am crying now as I write.  And frankly, I have stuff to do today.

The last 2 weeks have been about “planning”.  It was me talking to Michele and Carla about the “lessons” I need to teach while I am here.  It was me planning out videos so my Bs will be able to hear my voice and “see” me after I am gone.  One day had me in my closet cleaning out drawers because I don’t want Michele and Carla to have to go through my closet after I am gone. (That was short lived! I have way too much stuff! So that will be a long term project of purging! Ha!) It was me asking B if there was one thing that he really wanted to do or a place he wanted to see WITH ME, while I still could enjoy it.  My heart is heavy.

Treatment:

Chemo starts Monday.  CHEMO AGAIN!  We thought I would be able to participate in a trial instead of chemo.  Alas, I can’t…because I am TOO YOUNG! Seriously?  Again, you couldn’t script this! The goal is to just keep shrinking these dots until my body gives up.  Fortunately, they are not near my bronchial tubes. So as long as I don’t get sick, or the chemo doesn’t fell me, I should be ok….until the next time.  Actually, knowing that I’m starting chemo gives us something else to think about, to focus on.  I am trying to accept that I will have to get a port again.  It will be in for the rest of my life.

Big B told Lil B this weekend. Tears.

She is devastated and MAD. I can’t write about this right now, because I am wracked with pain.  But to give you a sense…she would not look at me when I came home after she found out.  She said it was “too much”.  Later, she asked me when I was going to die.  My. Heart. Broke.

Thank you for all the calls, texts, emails, and tweets.  To the folks who haven’t reached out…again. You are free.  I have released you.  This is my time to focus on my family, to focus on me.

To all who love me, I have NOT given up. We fight.  Maybe the “My life is a LIFETIME movie”, experience will work in my favor, and I will be here years from now. Thank you for the stories of REAL PEOPLE who have lived 10-15 years after terminal diagnosis.  It has given me an ounce of hope.  That is all I have.

B has begged me not to give up.  He says it’s not time yet.  I WANT to LAUGH as well as cry.  I WANT to live a comfortable life, as long as I can.  I will continue to talk, to educate.  I owe that to both my Bs, and to all the people who can learn from my Life in the Cancer Lane!

I power on.

As Red Ink reminded me yesterday during one of our cry fests, I don’t have…an expiration date!

And so it began

Pink Ink…

September 15, 2011, I got THE call. The one that told me a detour was coming. I told you there would be a lot of “anniversaries” coming. Well this is one of the big ones. A year ago today, I was told I had invasive ductal carcinoma, grade 3, stage 2 or 3 depending on which report you read. Triple negative breast cancer. You know, the one that black people get. The one that can kill you.

If you troll the Internet, you can find a million articles or posts on how people reacted to the life changing news. If you have been following me, you know I cried for about 5 minutes and then bucked up and prepared to tell folks. Prepared to fight! So today my post is not about me. It’s about my caregiver, my knight in shining armor. The love of my life. Below is an “UNEDITED” excerpt from my book. (You knew I had to write one!) Hopefully it gives an insight into the task he faced from the moment we got the news. It is a bit long, but it is just an intro into how he was thrown head 1st into Life in the Cancer Lane. Here we go…

last picture of us together before diagnosis

“It was official. We had to tell people.

B first called our parents. I was not there for those conversations. I knew that I could not emotionally handle hearing our parents’ grief. I did not know how that grief would present itself, (Tears, screaming, denial, silence?) But I knew I had to focus on me. I can only imagine how difficult that must have been for my husband to share that news with our parents. At the time, he only spoke to our mothers. Both fathers were out. He had to be strong for my mom and reassure her. We don’t really “do grief” well in my family. My aunt had breast cancer 10 years ago, and we never really talked about how it affected her or my mom. So I had no idea how she would handle this!

But B also had to be strong for his mom, so she wouldn’t be worried about him. After all, his dad was a prostate cancer survivor. They had been down this road. When I asked how the moms handled it, he responded that they were “as expected”. I didn’t ask more because I didn’t want to know, and I didn’t want to have him have to tell it.

Next, we had to tell Lil B. We were just going to tell her, no subterfuge. She knew we were waiting for the news. She is a very astute little girl. There is no way we could have kept something like this from her.
B met her at the bus stop outside our house. She was her regular perky self, talking about her day, and asking where I was. Daddy didn’t usually meet her at the bus stop. Walking in the door, she saw my face, and said, “Did you find out?”

“Yes, Mommy has breast cancer.” My husband said before I could answer.

“NOOOO! Mommy” she screamed as she burst into tears and tried to run to her room.

That kind of sadness and pain is something no mother wants to hear coming from her child. My heart broke right then into a million pieces. Tears! More tears! I ran to the bathroom to wipe them away while B held her in a bear hug. This was the baby girl I had dreamed and prayed for! This was the girl who kept a smile on my face…most times! The love of my life! Watching her cry, knowing she understood the severity of this news, broke me in two! I had to go to her. I came back and joined the hug. I told her it would be ok.

“Think about all the people you know who have survived breast cancer. Miss Maureen. Aunt Mona, Dr. Lindell. We will be ok. You just have to help me.” I tried to reassure her.

Amazingly, after about 5 minutes, she was calm and sat down for a snack and to start on her homework. I snuck back into my room and cried a few more tears. All I could think about was how I was ruining her 4th grade year! Who would take care of her? How would she manage? B knew I was having a “moment”. He knows me so well. He came back to hug me and bring me back out front. We HAD to be together. We HAD to fight this together. We HAD to be strong together. With a sigh, I held his hand and walked back out front.

That night we all slept together, holding each other tight.

But not before he sent “the email”…

Family and Friends – Today we learned that Barbra has breast cancer. Many of you will recognize this as ironic because she has done so much volunteer work in the fight against breast cancer. However, it is a fact and we are going to fight it together until she is cured. I apologize for having to inform you in this fashion, but there are so many people who deserve to know that I couldn’t possibly call everyone. It’s my fault and not Barb’s if anyone is offended that I didn’t get to them directly. Know that Barb has handled this well. It’s heavy, but she’s strong and has demonstrated that through what’s been a very fast diagnosis. This came out of nowhere. We’re only beginning to form the outline of a treatment plan, so I don’t have much more to share, but I ask that you keep us in your thoughts and prayers. This email is not going to a long list of people, so you are free to share this information with those whom you feel should know and would care to know. We’re not going to post it on Facebook or any social media, so I’d ask you to refrain from that as well. We’re also not going to do a lot of blast email updates – we’re just going to focus on our family and on what’s to come. Please be patient with us – we might not call, text or email back as quickly as normal. We’re happy to talk, but please give us a couple of days to digest this and to make sure Blayre is ok. We love all of you and thank you in advance for the support we know you will provide.

B.

And so it began…

A new journey

Pink ink…

Sur•vi•vor: a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

Talk about a loaded word! When you think of the word “survivor”, what is the 1st thing that comes to mind? Because of the advocacy work I have done, to me it means a person who has battled cancer. The next step my mind takes, is to a person who has battled breast cancer. But obviously, it means different things to different people, and is not limiting, but instead, all encompassing.

When I was first diagnosed with breast cancer, we were a few weeks away from October; Breast Cancer awareness month. Even though I was telling people I had breast cancer, I was not referring to myself as a “Survivor”. It just didn’t feel right. Then the Race for the Cure was upon us. I was to start treatment the next day. On the eve of the Race, as we did our last Race walk-through as a Board, I asked if I could wear a Survivor shirt. The response was a resounding YES! I was told I should “absolutely” wear a Survivor shirt! I was already a Survivor, they said. It still felt weird. The day of the Race, I proudly wore my shirt. But I watched from the edge of the crowd when the 1, 5, 10, and 20+ year Survivors paraded by. I asked myself “Do I really deserve to wear a Survivor shirt?”

In the Cancer Lane, you can find a million different answers to the question “When does a person become a Survivor”. Some say it’s ridiculous to say Survivor because there is in fact, no cure. Others say it’s at diagnosis, or when the tumor is removed. Public opinion leans towards people who have completed treatment, while advocates and doctors say at time of diagnosis. I know a couple women who refuse to use the word “Survivor”, and actively try to distance themselves from being called a “Survivor”. They have come up with all kinds of other words to describe themselves and their experience. (Over time, I have learned that they don’t have enough distance from their experience, and are in fact still “mad” with the fact that cancer interrupted their lives. This denial of a universal term is their way of coping) I have also read numerous blogs about when people feel they became survivors. There is never one answer. In fact, the only consistent thing is that a person becomes a Survivor when they choose to say they have “survived”.

Leaving the Vineyard, it all became clear to me.

I’ve been told many times how strong I have been this past year, how much I have been forced to endure, etc. This is true. When I recount my Life in the Cancer Lane to people, I am on occasion, shocked at the totality of it all. All week, Michele and I kept saying, “We made it!” Yes, we did! We made it through the storm, motivated by rejuvenation on the Vineyard! My last day on the Vineyard was capped by the news that Coping Magazine accepted my National Survivor’s Day picture entry! Joy!

So, as I boarded the ferry, it all hit me. Big B knew. He saw it brewing on my face. He hugged me and gave me my time. I sat on the trunk of my car, looked out at the fog rolling in over the ocean, and cried. I took the time to actually feel all that I had been through. I sat. I thought about the surgeries, many rounds of chemo, radiation, and all the missed activities. I thought about Big and Lil B, my family, and Michele, and all we had endured. I let myself feel the weight of this journey. So, I sat. I cried for 30 minutes. Despite the new headaches, I made it to the Vineyard! Most important, I had journeyed 10 months in the Cancer Lane.

I could not have scripted those 30 minutes of reflection had I tried. At one point, the fog was so thick; I couldn’t see the island behind me or the mainland in front of me. It was as if that moment was created just for me to…sit. So I allowed myself to think about my journey, to be in that space, and…survive.

It was only at that point that I opened my mind, heart and soul to the fact that I was indeed a Survivor!

Anything that comes at us now, will be…a new journey!

More to come

Pink ink…


Well we did it! We made it to the Inkwell! It’s been a long year. The thing that was always on the horizon was getting to the Inkwell. At my lowest point I said to Big B, “ If only I can get to the Vineyard.” When I was in the throws of chemo, Red Ink Michele sent me a photo book of our favorite pictures and places from the Vineyard. I pulled out that book whenever I started to feel “blue”. When I thought I was dying, just weeks ago, I told Big B, that I wanted my last trip to be to the Vineyard. I just wanted to see the Inkwell one more time.

Why the Vineyard? I have been going to the Vineyard for over 30 years. Lil B has traveled there 9 of her 10 years. It is a place where my family hits the “restart” button. Michele and I have been reconnecting at the Inkwell for at least 10 years. Thanks to my parents, it is a place that feels like a long warm hug. Thanks to my parents, and now Big B and Michele, it is a place that feels like (If I can be a bit dramatic!) unfettered love. We all just breathe, relax, and take time to…LIVE.

This was the first time that I have ever been to the Vineyard without my parents. I must say, it was bittersweet. When it was time to make our reservations last year, we all hesitated. Would we really make it to the Vineyard? Time came and went, and my folks chose not to come. A part of me was ok with that. It would be a time for the “3 Bs” to start our own tradition. But as time grew close for us to leave, I felt sad. When I got to the island, as the days passed, I realized that I missed the comfort of my parents presence. Given all that we had been through, I wish they had been there to hit “restart”. As we walked around the island, Lil B would point out the places she went with Poppi for donuts, or the fried clam place she went with Nana. Alas, like everything else this past year, it was a new experience, and a little painful.

There are so many stories to share. So many moments of reflection. And a few headaches. Yup, still have those! Michele and I thought about posting everyday. But in the end, we chose to just enjoy ourselves, and our families. To enjoy the new memories we were creating.

I made it to the Inkwell. I have hit “restart”.

So sit back. Over the next few days, as I reflect, there is sure to be…more to come!