It ain’t over

Pink ink…

So many days I sat in bed and said, “I can’t wait until this is all over”. For 9 months, I was always counting down to something. Four more chemo treatments. One more drain to come out. One more week of radiation. Four more physical therapy sessions. If I could just be done with the poking and prodding! (I am still waiting for that “final” surgery!) Then it will be over…or so I thought! What I have learned is that it is, in fact, never over.

When a person finishes treatment, they celebrate! Friends and family throw parties! (Thanks again!) People call, they send cards. Everyone breathes a sigh of relief. We can all finally “move on”. The doctors tell you that you have moved into the surveillance period, where you are just watched. The expectation of others, and the patient, is that life will go back to normal. They want…actually need…the dialog to turn away from breast cancer. The past how ever many months, are just that. In the past. But the reality is very different. I am 7 weeks out from radiation, and now understand, that I have a new normal. In some ways it is like being pregnant, and then having a baby. No one tells you what it’s really like to be pregnant. By the 9th month you just want it out of you. After the baby comes, you’re thrilled, but realize your life is changed forever.

That is also life in the cancer lane.

I have often said that no one really gives “cancer real talk”. I have tried to do that here, and on Twitter. So in that vein, let me tell you what it’s been like for the last 7 weeks. There have been many highs and vast lows.

Let’s start with the lows.

Over the last 9 months, my body has been used and abused by the rigors of treatment. Like most Survivors, I am still battling chronic fatigue and what is lovingly called “chemo brain”. Despite being months from chemo and weeks from radiation, these side effects regularly affect my daily routine. One day I can be out for hours with lil B, and the next, I won’t want to get out of bed.” I’ve been told this may last at least a year. I have little appetite. While my burns have stopped oozing, there are still places where you can still see the white meat.
Wearing a bra is still uncomfortable. My breasts itch on the inside where I can’t scratch. (Side note: how DOES that happen?!) I still have limited movement of both arms, though it is getting better. Thanks “Mayo Amy”! But the last 2 weeks have been the worst. You see, I have been suffering from massive headaches. Yet, I don’t have allergies, or migraines. These are the worst headaches I have ever experienced. Debilitating headaches that come with dizziness, nausea and shortness of breath. Two weeks ago it was so bad that I bum rushed my doctor’s office and, while crying, begged them to help me. Six hours of tests later, they had no clue. Being a cancer patient does have its advantages. When you are sick, they take it very seriously. “Has cancer spread” is the 1st question that everyone is trying to solve. A week ago Friday, I was scheduled for an MRI. I rearranged schedules, took the pre-MRI anxiety meds, and was ready to go! Guess what. If you have expanders, you can’t get an MRI because they have magnets in them. The MRI would cause the boob to explode. Fast forward 2 days to Sunday…5:30am. I go to the ER. Next thing I know, I am having a CT scan with contrast imaging. Did I mention I was supposed to be on a plane at 3pm? Or that it was Father’s Day? Yeah…

Scan, headache, nausea, dizziness, and more nausea.

And no answers.

I now know there’s a small spot on my brain. The docs don’t think it’s cancer, but they are not sure. Could it be signs of an aneurism? The docs aren’t sure. So we wait. We do more tests. (maybe a spinal tap!!) We wait some more. Two nights ago, in the midst of pain…a “7.5” on the Mayo scale of 1-10, I had a breakdown. “I just want to be well!” I cried to myself at 2am. “I just don’t want to feel pain anymore!” I cried into my pillow. Big B was 2000 miles away. Red ink…was asleep 1000 miles away. I wept alone, in silence. Ironically, it was not the fear of more cancer that floored me. I just want to NOT FEEL PAIN anymore. I don’t want to be in the hospital anymore! That is cancer real talk from a Survivor. Can I please just get a break from being…sick?

On the upside, I made the plane after the Scan! I didn’t get frisked at security because of my implants! Doctor Michele will be here in 2 days! Yay! I will feel better knowing that if my head explodes, she can pick up the pieces! I am spending time with my nieces and nephew. Five months ago, when I found more cancer, I didn’t know if I would see them again. Dramatic? Maybe. The truth often is.

Last week, I had the opportunity to speak at the Komen Survivors Conference. Fortunately, my head didn’t hurt that day! It was my 1st speech since “finishing” treatment, and I think I rocked it! However, I was dismayed, once again, by the people who came up to me afterwards saying they “didn’t know it was that bad”. I am learning to accept that, as with childbirth, people only hear what they want to hear.

Yes, I am firmly in the next stretch of the Cancer Lane. I am healing. I am learning to navigate this new course.

I am learning…It ain’t over!

The Fright

Pink Ink…

So, this morning the Survivor world woke up to the news that Robin Roberts has “pre-leukemia”, a disease of the blood and bone marrow that often arises due to previous chemo treatment. Ok, you may have heard this news also. Well, it hit me like a ton of bricks. Why? Because it was a big reminder that you are never ever really out of the Cancer Lane.

Ever since I finished radiation, people have been congratulating me, telling me “you’re done!” But as I have said before, it doesn’t FEEL done. I still have that
<—crazy physical therapy. I still have reconstruction. I still have more tests! “But at least you are done the hard stuff!” a friend told me. Am I? What about fatigue that lays me out? My “brother” in Chicago told me now that “I’m cured”, he can go back to clowning me. Really? Actually, I welcome that because seeing him walk on eggshells around me was too much. Folks are starting to be annoyed because I don’t immediately call them back. Family is asking why I am so tired. Umm, maybe because my body is just beginning to regenerate? My iron is low? My white blood cells are trying to grow? Done with the hard stuff? Done with the invasive stuff, yes. But, what about the emotional side effects or fall out?

This past week I was saddened because a couple of people were upset at me because I didn’t get back to them immediately. Another was mad because they weren’t included in the SURPRISE (meaning I didn’t know!) party. Again, really? Big B listened as I shed tears about people expecting too much of me, too soon. Yes, I am starting to look “normal”, and I am trying to resume some kind of life outside of treatment. But it is not easy. Big B, always the rational one, comforted me, and dropped his little bit of wisdom. While we are still on this journey, people have moved on. In most people’s minds, I am done and “Cancer” should not be part of the dialog anymore. People see me growing hair, or read my tweets, and they think it’s “all good”. He was also honest, and said that he looked forward to cancer not being so much of our dialog. But at least he acknowledged that it would always be there, in our lives to some degree.

This morning when B and I were talking about Robin, it hit us. In pop culture, we have Breast Cancer Champions like Robin, Sheryl, and Giuliana that have “beat” cancer. While their messaging is great, it is also unfortunate, because it leaves the impression that after you finish treatment, you are in fact “done”. It is why people around the “Survivor” feel so comfortable “moving on”. It is also why people are gob smacked when Sheryl gets a tumor or Robin gets a blood disease. It is why I get mad at Giuliana for, with the aid of creative editing, giving the impression that after her double mastectomy her life was pretty much back to normal, except for the occasional tear while giving a speech. (Long sentence, I know! Lol)

Rest assured, I don’t sit around thinking about when my cancer will come back. Trust, I am quite clear that I am more than my breast cancer experience! But as my Cancer Mentor & I were on the phone crying about Robin this morning, I realized again that I am scared about what the future may hold. Tracey assured me that that fear is ok. We are in the Cancer Lane for life. Our bodies will never ever be physically the same again. No matter how fit we become in the future, cancer has altered us. Several friends texted or emailed me this morning about Robin. One was honest and brave enough to admit that she was scared for me as well. That meant a lot because she recognized that while one chapter had ended, we were still on a journey.

So please friends, have patience with me. Have patience with other Survivors. I am working hard to live this new life.

As Robin so eloquently said this morning, I promise to Focus on the FIGHT and not the…The FRIGHT.

Nothing short of it…

Pink ink…

“The biggest & hardest single thing that you will be required to do in the entire battle is to make up your mind to really fight it. No exceptions. Nothing halfway. Nothing for the sake of ease or convenience. Everything!”

This is on a plaque called Commitment in the Cancer Survivor’s Plaza in Palm Springs. It caught my eye because it is so appropriate. This past week and ½ has been all about commitment and survival. It’s been such a whirlwind of activities that I can only hit the highlights. Should probably be 2 posts, but oh well!

As you know, it started with AC going in for a double mastectomy. What I didn’t say before was that I was on a celebratory “survival” trip with Big B. So while I enjoyed the 1st quiet time in 8 months with my husband, I felt extremely guilty & sad that I was so far from my friend. I had a great weekend! There was the aforementioned Plaza, where I spent a few minutes reflecting on my journey. It was there that I realized that AC was committed to her survival & that we would get through this together even if miles apart. She could have opted for a lumpectomy and “waited it out”. But she put on those pink big girl panties and got a double mast. That’s commitment! Turns out, she’s a rockstar! Came home 2 days after surgery! SERIOUSLY!!?? I was barely conscious after 2 days. Then she had people over to watch the Heat game, a few days after that! Rockstar! I know she is still recovering & in pain. But she is going hard!

While at the park, I once again reflected on how committed my husband was to my survival & me! How lucky was I? Talk about true love! There was an interactive sculpture that shows people going through the cancer process. At the end there is a family of 3 stepping through the finish. It reminded me of us. The 3 Bs. I knew we would continue to make it through. So I jumped right in the sculpture.

Last week, I also started physical therapy…or as I have been saying…rehab! But my 9 year old has asked me not to say rehab because “it sounds wrong!” Side eye that my 9 year old even knows what rehab is! Anyway, my journey continues. I am committed to getting back to some kind of normal and that includes being able to use my body. Who knew that it would still hurt so much to lift my arm above my head or behind my back? My therapist is very nice & patient. Truthfully, I didn’t think it would be that taxing. But it is. It’s the kind of crazy where you have to laugh b/c it hurts or is uncomfortable. I used to think that was silly when people said they laughed b/c it hurt. Really? Well once again, I have become that person! Six more weeks of therapy. Hopefully I will have stopped laughing from the pain, by then.

Ok, next highlight…or lowlight. My Cancer Mentor Tracey was scheduled for out patient surgery last Wednesday. Of course I was there to hold her hand, cheer her on, help in anyway I could. She assured us all that is was nothing, but she appreciated our love. Well let’s just stay, she is still there 5 days later, with no real date of release. No real understanding of what is wrong. Each day that she sits in the hospital, it pulls at my heart. I feel helpless and vulnerable. This strong woman who led me and my family through the last 8 months, is now down. I know that all I can do is “be present” as I have told people. But I can’t help but feel that I wish I could “make it all better”. Our family makes regular rotations to the hospital. One time I asked Lil B if she wanted to go home. She responded “Oh no. After all she did for you Mommy, I have to stay here for her”. Nine years old. Tears…

Last highlight. And a BIG highlight. Actually the best highlight of the last 9 months. I won’t repeat Red Ink’s details. But here it is from my perspective. When I was done radiation, Big B said he wanted me to go to Chicago to spend time with Red Ink, Carla & Dontrey. My tight Chicago girls. I was loath to go. I wasn’t up to plane travel yet. I didn’t want to be far from my doctors. Yes. Excuses. B was like “Don’t argue. It’s going to happen”. But I didn’t make a move to get a ticket. Finally, Carla called & said I had to get a ticket b/c 1 or 2 people wanted to see me, and they already bought their tix. Ok. I guess I was going. I proceed to tell my Radio-onc Dr. Michele, of my concerns. She informed me that ironically, there was an international cancer conference in Chi the same weekend and 3 of my 4 docs would be there. Ok, I guess I had no excuse.

Fast forward. I get to Chicago and get to lay my eyes on Red Ink’s kids! My niece and nephews. I love all 3 like they are mine. But I wanted to wrap my arms around the oldest and just hold him tight! I was soo happy to see him happy and well and laughing! Given all his health challenges the last few months, I just wanted to look at him. And look, I did!

Friday night we were scheduled to go out to dinner. I assumed it would be about 8-10 people. Imagine my surprise when it was 20 + people! From each coast & in between! They totally got me! I had no idea! I know many elves were involved in putting it together. But special huge thanks to Michele, Carla, Evans, Oveda & Wendy! WOW! Tears everywhere! Now I am a girl who likes a party, but I was floored that people would come together to celebrate my survival. At one point I felt like the air was being sucked from the room. I had to just sit and take it all in. One of the people I was most surprised and HONORED to see was Vanessa, who had lost her sister to breast cancer within 2 weeks of my diagnosis. (Her sister had always been an inspiration to me! She fought HARD!) It was the 1st time Van & I had seen each other since then. We just embraced and cried. As the speeches flowed & the congratulations came, I felt overwhelmed. It was perhaps only the 2nd time that I was able to really reflect on the fact that the “hard part” was over. I had made it! Everyone’s words were so kind and genuine. It was embarrassing. I felt…feel…so honored that they felt my journey was worth all this. All I could say was “Thank you”. Then I added, “Touch your boobs!” LOL

The next day was another fete at Wendy’s house! Dessert and Champagne! EXACTLY what the doctor ordered! Again, a true testament to time and friendship. Wendy and I have had a tumultuous friendship over 26 years. But as we have matured and as I navigated cancer, we have become close. So to sit in her house and cry together was truly an ironic moment. As Michele said, we all wore our custom tee shirts and vowed to spread the word. As I look at pictures of 20+ beautiful brown faces talking Breast Cancer Survival, it makes me smile. I am proud of myself and of my friends. Then we stopped by breast cancer Giuliana’s restaurant for a photo op! More on that in a later post.

Finally, Sunday was National Cancer Survivors Day. Such an appropriate end to such an emotional weekend! The Avon Cancer walk was also this past weekend in Chicago. You could not have scripted this better! I tweeted about Survivors all day! But you know my story always has a twist.

Going through O’Hare security, I was pat down due to my…breast implants! Yes, you read correctly. I kindly told them that I was a Survivor. I had on a Survivor shirt! Come on! The young lady asked, “Well does it hurt?” Umm…yes! “Well I will try and be gentle” Scene…

The end of that plaque in the Plaza states that when you have committed fully to survival, “you have accomplished the most difficult thing you will have to accomplish throughout your entire treatment”.

I have committed. I will continue to survive. I will do everything. Nothing short of it…

Sea of Pink

red ink…

Catching my breathe after a weekend surrounded by pink ink and all of her “pink” sorority sisters who were here in Chicago for a “fanta-bulous” celebration weekend that started with a wonderful dinner, and followed up today with a champagne toast and dessert party at the home of one of her line sisters (thanks Wendy)! Most importantly, I was surrounded by and enveloped in the love that they brought to Barb from every corner of the country – Florida, Seattle, California, and New York – to let her know how much she means to us. It was a little surreal for me, I must admit – like being the only black person in the room for the first time – but quickly I realized that the bond that we shared, our mutual love for pink ink, was the only sisterhood that really mattered this weekend.

We were united in “pink” as we looked together in the face of breast cancer as it has affected one of our own. After hours of talking, laughter and some tears, we paused for a minute to focus everyone on the take home message of the evening that the special tee-shirts designed for the occasion bore – “touch your tatas” (thanks, Carla!). The “goodie bags” for the night contained instructions on how to do a breast self-exam, as well as a solidarity candle that we can all light, wherever we are, to remember this journey and to unite in strength. Conversations were had across the table about how we as women, especially as Black women, need to be sure that we attend to the tatas! We have to find more, and more effective, ways to get the message out about how to take better care of ourselves and each other.

Even while we celebrated Barb this weekend, we were ever mindful of those who are in the midst of struggle right this minute, and even of those in our lives who lost their battle. I had to comfort Barb and remind her that it was o.k. for her to celebrate her journey – to be present in this moment – even as her heart was heavy with worry about her cancer mentor back in Phoenix who is in the hospital.

To allow yourself to be buoyed by the love that surrounds you at a particular moment and to surrender to it — to body surf in it and truly feel it – is as important a message about our health (mental, physical and spiritual) as any that we carried with us this weekend.

My little red boat was honored to be in this beautiful sea of pink this weekend, and I was definitely brought gently and humbly to the shore by the warmth of your sisterhood that knows no boundaries. My best love to all of you for embracing me as your red ink “sister” (thanks for the special bag, Regina!), but most of all for loving my lil sis – who was yours before she was mine . . .

Now that we are all making our way safely back to shore, let’s take this “tata” message to the streets, ladies!

Happy National Survivors’ Day Barb! You are a survivor in every sense of the word – having made through this journey with style, humor, honesty and grace – and have truly earned this celebration! Love you girl!