Walk with me

Pink ink…

Today I registered for the Phoenix Race for the Cure! That’s right. In 3 months and 3 days I will be participating in my umpteenth Komen Race.

To top it off, I created a Pinkwellchick team! Shocker huh? LOL. Not a shocker at all! In full disclosure, I do sit on the local Affiliate Board of Directors. Some would say I HAVE to walk. That is technically true. I have to participate as part of my Board responsibilities. That’s what I have to do according to the piece of paper I signed. But, there’s more to it.

I could give you the straight facts:

-We need a Cure.
-75% of the money raised stays local.
-The money raised goes toward providing mammograms, treatment & breast cancer prevention and education.
I am the Cure encourages people to make a commitment.
-Every group I am in from the Jr. League to The Links, Inc. has partnered with Susan G. Komen to bring awareness.
-Did I mention we need a Cure?

But that’s not why I have to participate. I have to participate because…I HAVE to! LOL. You see, breast cancer awareness has always been a part of my life, a part of me. But now? Now, it IS me. My breast cancer does not define me. But it is a defining part of me. So I have to be there. I started my treatment journey the day after last year’s race. What a triumph it will be to walk, having been in the Cancer Lane for a year!

Walking with Survivors after surviving…everything.

Walking with my husband, celebrating HIM. Thanking HIM! He has survived this journey. He got me through this journey. The Race day will also be our 17th wedding anniversary!

Walking with Lil B…again! This will be Race #10 for her! But it will be different this time. She now knows first hand what self-detection means. She knows first hand what “Survival” means. She can now “Share her story”.

Walking with friends from all over. Friends like Red Ink Michele, who promise to walk side by side, hand in hand with me, as we promise to continue this dialog, continue to survive.

Walking in memory of those we have lost. For years I have walked in honor of a friend. We lost her not long ago. I will still proudly wear her name on my shirt.

Walking, knowing that I have a responsibility, a desire to keep giving “cancerrealtalk”. A responsibility to get even more people talking about breast cancer. A responsibility to get my friends to do self-exams, to get mammos. A responsibility to DO SOMETHiNG.

So you see, I HAVE to walk.

I hope you will…walk with me.

New Day

Pink Ink…

“My best friend thinks I am going to grow my hair to my butt when this is all done. I don’t think so. I may keep it super short. Aside from teaching my daughter that hair doesn’t make the woman, I think it looks kind of fly. At the end of the day…it’s just hair!”

That’s how I closed my post on November 13th. Halloween will forever be remembered as the day we shaved off my hair. We look back at those pictures and laugh, happy that we were able to turn the process of losing hair into a fun family activity. Here we are many months later and my hair is growing back!

Recently, I met two women at a symposium, who shared that they chose to forgo chemo because they didn’t want to lose their hair. I was dumbfounded. I actually had to sit back and collect myself before I said anything. As a Moderator, it wasn’t my place to judge…at least outwardly. Trust me, I am well aware that every woman’s journey is her own. I also am very clear on the importance that hair plays in our society, especially among Black women. Nonetheless, I was shocked, mad, resentful, and then finally, sad. When I asked if the women were happy with their decision, they both said yes. Instead of saying what was on my mind (“Are you that crazy? Your hair isn’t even that fly! So you would rather be dead?”), I directed the conversation to the way cultural perceptions about breasts and hair can direct how treatment is determined. I followed up with how we, as patients, should pursue the most aggressive treatment available. What else could I do?

But our dialog got me thinking, as I rubbed the fuzz growing on my head. Folks need to hear that it really does come back! So today, instead of dwelling on the fact that I am waiting to find out what’s going on IN my head, I thought I would touch on what’s on TOP of my head.

Now, if you are uncomfortable discussing hair on body parts, STOP HERE! You have been warned! LOL

Now to refresh, chemo kills. Chemo attacks all dividing cells in the body. So in addition to cancer cells (which quickly divide) chemo attacks in particular, hair follicles, the stomach lining, & digestive track. This is why patients get nauseous and lose their hair. The extent of hair loss depends on what drugs are given. For example, the Red Devil caused my hair to fall out…EVERYWHERE, except my eyebrows and lashes. My 2nd round of chemo was a different mixture. So then, my eyebrows and lashes came out as well. Now, I was a hairy chick before all this started. I believe in waxing. So I was happy to lose the unwanted hair.

Again, STOP HERE if you don’t want to read about body hair!

No light fuzz above the lip, no underarm hair, no arm or leg hair was great! Having no eyebrows wasn’t great! It got better, once I learned to draw them on. No eyelashes was no fun. My eyes were dry all the time. Now, no hair…down there…was…umm…interesting. Full disclosure, I was not a “Brazilian” girl. (The pain!) But landscaping is a necessity! Even so, to have nothing down there was a lot. Eventually, I got used to it. The only challenge was when in a public toilet. You know, squatting. When you have NOTHING, there is nothing to direct…the pee! So a few times, let’s just say, it didn’t all make the toilet. Hey, this is CANCER REAL TALK!

But back to the point. It does grow back! And let me tell you, it grows back with a vengeance! As with hair loss, hair growth has become something “the 3Bs” laugh about. Yes, it’s true that the hair on the head “changes”. My hair is now straight. It will be interesting to see if it stays that way. There is also grey now! That’s ok. I don’t mind that, even though I didn’t have it before. It’s also, the 1st time I have seen my natural hair color in years! I love a highlight! So “natural” is interesting. I am also amazed by how many people touch my head. Kind of like when you are pregnant. Side note…please don’t touch my head! As people now ask how long am I going to grow my hair, I realize that folks associate my hair growing back with me being better. Ironically, I miss my baldhead. I look back at my bald pictures with nostalgia. No, I won’t shave it. But I am going to keep it short.

Ok, here’s the crazy part. The rest of my body hair is growing in with the quickness! My hair…down there? Like it never left!! TOO MUCH! Unfortunately, my skin is still too sensitive to really wax. So shaving is a necessity. Underarm hair? Check? Legs? Check? SIDEBURNS??? CHECK! You read correctly. I didn’t have crazy face hair! I felt sorry for those women! But umm, now? Yeah, still trying to work that out! Other Survivors have told me it will fall out. But right now, when I look in the mirror, all I see is hair! All down the side of my face! Plus I have a light mustache! Cute huh? NO! LOL. I’m a tweezing fool. I’ll let you know how that works out. Lil B is tickled. Laughing, she says “At least it’s growing back mom!” My eyebrows are back in. I risked getting them waxed about a month ago. No bushy brows for me! But a month later, they haven’t grown back. So you never know how it will play out. In retrospect, I think I like my drawn on brows better than the real ones! Camouflage makeup is my friend. Thank you MAC and Bobbi Brown!

Why do I share all this? To make the point that hair DOES indeed grow back! Lil B is back to playing with my hair. She wants me to get a Mohawk. (No!) Why do I write about this? Because I want people to fight as hard as they can, even if that means losing their hair. Choose Chemo! Choose life! I did!

Per Alicia Keys…”I’mma live life. Live it loud, like’s there’s only one life. Have to live it up! One Life. Have to live it up.”

Because I chose chemo, because I chose life, I can sing with Alicia…

“It’s a new day, NEW DAY”.

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.

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