Cover up. Unacceptable…

Pink ink…

As Red Ink and I inch closer to reconnecting our families on The Inkwell, the fallout continues! Lol. Not the medical fallout (more on that later), but the breast cancer fallout! The time has come for me…to buy a bathing suit!

To refresh your memory…. I am the one that just wanted to get back into a bikini, sit on The Inkwell and sip a cocktail! I am the one whose husband doesn’t want to see anything but a bikini! Did I mention that while going through treatment, I just WANTED TO GET BACK INTO A BIKINI?

Well that time has come, and it ain’t pretty!

“Why?”, you ask? Oh, because I don’t have an ounce of muscle left on my body! Not a good look, even if I am a size 4! Umm, because I have a square of dark, burnt skin covering one side of my body, which no bathing suit could possibly, cover! Lil B calls it my “box breast”! And finally, because my boobs don’t MOVE! Lol I can’t rearrange them in a suit! The expanders are pretty solid. They won’t be all squishy and soft until I get the real deal at the end of the year! So again, I say…it ain’t pretty!

Now, no woman LIKES shopping for a bathing suit! I am no exception. I have cellulite like every other woman of a certain age. And as Red Ink likes to point out, I now have hips and butt thanks to the birth of Lil B. (Michele does NOT have these things! She was graced with boobs) But, I never really cared about all that stuff, b/c there are always going to be people who…umm…look…ummm…well let’s say that there will always be folks who wear bikinis, who shouldn’t. These people make it ok for me to wear one! But for the 1st time, I feel really self-conscious.

While visiting my parents, I made an effort to ease my mom’s stress (“women over a certain age shouldn’t wear bikini’s”) and bought a 1 piece I thought was kind of snazzy! Not a success. I wore it once. Lil B was horrified! She begged me not to wear it. She said it made me look old! She didn’t care about the box breast, but urged me to cover it so it wouldn’t burn more. I texted a pic to Big B. He didn’t respond for a few hours. When he did, it was a simple “You always look beautiful”. That’s code for “ I love you, but I am not feeling that”. So that suit went in the back of the closet.

A couple days ago, Lil B and I were going to hang at a hotel pool with a friend in town visiting. Time to get a bathing suit. A nightmare! Suit after suit looked crazy. I got over my flabby stomach pretty quickly. It’s still smaller than most, or so I tell myself! But ironically, it was seeing my “box breast” squeezed into a top that gave me pause. A “medium” didn’t cover enough, and a “large” was too big. Because my breasts don’t really move, it made adjustments almost impossible. At one point Lil B and I just burst into laughter. Did I mention that the burnt breast is still a tad swollen, so it sits a little higher? I can’t imagine what I would have done if my boobs were still DDs! Trust me, the picture is better than the reality! LOL

Lil B and I finally settled on a bikini that wasn’t too offensive. Off to the hotel we went. I still am not comfortable getting in the pool, given that I still have headaches. (Boo) As I started to peel off the outer layers…I started to feel self-conscious. This is a feeling I have not really experienced over the last 9 months. But I was determined to wear my bikini and not be altered by Life in the Cancer Lane. I even eventually got in the pool. No one even glanced at the lady with the box breast! All was well until Big B and our friend came over. “Give me a towel,” I yelled! Big B looked at me like “what’s the problem”. I was overcome with anxiety. This was a guy. A guy friend who knew what I was like with my old boobs. He hadn’t seen me without hair or new boobs! This was not how I wanted him to see me for the 1st time in 9 months! I felt naked. Exposed. So I stayed in the pool until he walked away!

Coward!

Ironically, I am glad this happened before I landed on The Inkwell. Big B says my scars are badges of honor. I am working hard to adopt that mentality. Lil B reminds me that it is what’s on the inside that makes people beautiful. Again, I will try to remember that when I feel insecure sitting on the beach.

And if I feel too crazy, I will just…cover up.

Medical update: Still having headaches 10 days after shots to the back of the head.

Doc: “Well, you say your headaches aren’t as bad. They have reduced 50%. To me that is a success!”

Me: “Well to you, as a scientist, 50% is a success. To ME, as a PATIENT, it is NOT!”

Unacceptable…

Beyond the headline

Pink ink…

What a difference a week makes! I think I may be making some progress, taking a step forward again towards healing! Only time will tell. But let’s back up a bit.

Whenever you get a bunch of Survivors together, you inevitably get certain questions. They include “When do you become a survivor?” (That’s another post!), “How has your life gotten better since you got cancer?” and the more generic “How has your life changed since you got cancer?” If you are ever a part of these types of conversations, you will hear responses all over the map. It is really an educational experience. One thing that always comes to light is that a lot of Survivors fear going to the doctor for years after they technically “finish” treatment. Others put off surgery or getting follow-up appointments, because they are just tired of being cut or prodded. (I can definitely relate to being tired of the constant prodding) But I guess I am still too close to my “journey” to dread the doctor. In fact, over the past few weeks I felt like I needed my doctors more than ever.

As I have mentioned before, I have been experiencing mind numbing headaches. The way I described it to my doctors and family is that when I was being treated for breast cancer my body hurt from the TREATMENT not the sickness. Now my body hurts because of…SICKNESS. When my doc said it might be more “disease”, I was like “Figure it out. I can’t stand the pain.” What is the spot in my brain? Why is this happening? Last week, I had my worst night yet.

The next day, I told my husband and Red Ink Michele that I thought that perhaps I was dying. I felt that my body was finally giving up. That is what I felt. It was one of the most difficult things for me to consider, and then share.

I am not being dramatic. I have felt this for a week. I sat up late at night and thought about how ironic it would be that after everything I went through it would not be the actual breast cancer that killed me. How ironic will it be that after everyone celebrated “the end”, that it would in fact be “the end”? No doctor was telling me that I wasn’t dying. The tests said it didn’t appear to be cancer. But I still had to see a neurologist. There were no answers. We only told a few people that it wasn’t cancer, b/c we knew that the other part of the story (that I was very sick) would get lost behind the headline of it probably not being cancer. We didn’t want more celebration. We wanted answers.

I can’t describe how a person sits in the space of realization that they are dying. Of course Big B and Red Ink were supportive and said we shouldn’t think that way. AC urged me to just sit still! I indulged them as they hypothesized about what was going on. But at the end of the day, I could feel my body shutting down. My pressure was steadily rising. The headaches were progressing. My vision was blurring, and the nausea was coming more frequently. I could go on and on about my symptoms. On the other hand, I had to keep going! I pulled out those damn Pink Big Girl Panties, and went to Lil B’s performance, I went to my chapter retreat, went to celebrate a friend’s birthday. I still tried to write. After each activity, it was getting harder and harder to recover. More people were commenting that I didn’t look myself. (There were others who could only see that my hair was growing back! Lol) But, I started to outline in my mind the letters I needed to write to my family and friends. I was starting to “prepare”.

Yesterday we went to the neurologist. She was as kind as all my Mayo doctors have been. She put me through a battery of tests, some of which were mental tests. (I didn’t pass all of those! I’m chalking that up to chemo brain! Lol) She confirmed that I still have a good deal of neuropathy from chemo! Who knew!? Has nothing to do with my headaches. Ahh. Just add it to the list…

Headline: It was confirmed! No cancer!
Headline: I am not dying…today!

Relief! I think B and I took a full breath for the 1st time in a month. I have some other stuff going on in my brain. But it doesn’t seem to have to do with the cancer. The Cancer treatment? Perhaps. But at least now we have an answer! The solution?

Needles in the brain!

Yes! You read correctly. Two needles inserted into the brain, then moved to 4 different angles as they injected medicine. Talk about getting probed! I hope the people in the next room weren’t too shocked by my screaming. So now we wait to see if these meds will work. Again, what a difference a week makes! I will keep you posted!

Maybe now we will be able to move…beyond the headline!

Running just for myself

red ink…

Last night I completed my very first 5K – the Bastille Day 5K in Chicago (thus the French flag!) – and I have to say that I’m proud of me! I started a “couch to 5K” program a couple of months ago. Now I know a 5K may not seem like much for those of you half and full marathoners out there, but it was a big deal for me. I started out literally unable to run a quarter mile without stopping, and ended up running the entire race! I’ve done a lot of things in this life so far, but honestly this ranks right up there next to passing the bar exam. You see, in a life filled with many things that are out of my sphere of control, including all that pink ink has endured and the challenges that my own family has been working our way through this year, not to mention just parenting teenagers, training for this race and just running period, has been a remarkable way for me to carve out some space for myself and to just breath. It also allowed me to empathize with, in a way that I hadn’t experienced since last giving birth without meds, the notion of pushing through pain. As I’ve encouraged Barb to “just keep swimming” and witnessed her tracking mile markers on her journey, I made a decision to “just keep running” even when I felt the burn. Glancing at the markers along the way let me know that I was making progress and encouraged me to keep going. Even as I focused on the end goal, I enjoyed a silent celebration as I passed each guideposts because they let me know that the ever elusive finish was out there somewhere even when I couldn’t see it. It is for you too, pink ink!

Now I’ll admit, I kind of wanted a cheering section at the finish, but my husband had to work, my daughter is away at camp, and my oldest son was too pooped. My youngest son, who shares my initials (go MBRs) and my drive and who I’ve cheered for at many a swim meet to the point of hoarseness, was there to greet me and give me water when I finished and I will always be grateful to him for it! Afterwards, we wound our way to Chipotle for him and Whole Foods for me, to finish our modest celebration. My experience helped me realize how important it is for our chicklets to witness us persevere through adversity even when you don’t have a cheering section. This same son just wrote a speech for a summer class about someone who taught him about unconditional love, and a bit to my surprise, he wrote about his brother, who has both Aspergers and epilepsy. One of the lessons that he learned is that while unconditional love isn’t always easy, there is a silver lining to every cloud. He talked about how having parents who were often distracted by a siblings’ greater needs, taught him to be more independent and to work hard without constant reinforcement. It taught him to work hard just for himself and to pat himself on the back when necessary. At the end of my race he told me he was proud of me, but really I’m grateful to him for teaching me an important lesson about learning to cheer for myself! So in answer to the question that several people have asked me (i.e. who I was running for?), my answer is “this time I was running just for myself!”

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.

The Strongest Link

red ink…

Pink ink and I made our respective journeys home last week after several days attending the 38th Assembly of the Links, Incorporated, an organization of African American women dedicated to friendship and community service, of which we are both members. (She’s on me because I haven’t posted yet! Lol!). The two of us share membership in this international organization, comprised of chapters across the country and a few in other countries, with her mom, my big sister, and some of our other dear, dear friends.

Given all of the challenges of this past year, the two of us debated our attendance up until the very last day, but Pink Ink needed to be there to participate in her “graduation” along with a distinguished cohort from a leadership class, and I wanted to be there to spend some time with her without the wonderful, but distracting, noise of our hubbies and chicklets, and frankly was looking forward to a moment to just breathe.

Hurricane Debby and pink ink’s hurricane headaches threatened to spoil the trip, we both strengthened our resolve just to get there if we possibly could.

(A word about how proud I am of Pink Ink for finishing this leadership program. Over the past year, she persevered despite her health and participated in seemingly endless projects, assignments and activities meant to cement her qualities as a leader. As she discussed in her closing speech, she was already a leader, serving on various boards and taking on responsible positions in every organization that she is involved in, but the experience of participating in the leadership institute while battling breast cancer showed her a different way to lead, not by doing everything herself, but by depending and drawing on the significant strengths of others to get the job, whatever it may be, done. )

Now it wasn’t an easy trip. Pink ink was honestly not feeling well most of the time we were there and I could see it in her eyes. She was in the bed resting after a long morning of meetings when I arrived, but it was good to hug her and see her face again. Honestly, since this began, I don’t take any time that I have with her for granted. I’ve heard too many “my friend had breast cancer…” stories where the end isn’t what I want to hear, (no doubt Pink ink has heard these too, but we don’t share these) so as much as we try to act normal, it’s in the back of our minds’ all the time. I immediately went into big sister mode, ensuring that she had taken her medicine and hitching a ride to the local grocery store so we’d have some food in the room to keep her energy up. Incidentally, I bought enough groceries for a week! Her loving hubby had asked me to “take care of his lady” and I was determined to do so on my watch! In the meantime, it was good to have my big sister there to watch out for me.

Pink ink soldiered on attending educational sessions determined to do all the things that she came to do. I could literally see her checking off figurative boxes. Finish Scott Hawkins, Dinner off site with Joy & I, etc. By the second day, her headache and body aches had really caught up with her and she was worried about whether it was going to progress to debilitating. She didn’t look ok to me. She told me that for the first time, she felt sick. She was so small, like I saw her in Phoenix after chemo, in that hotel bed and she was worried which of course worried me. Did I mention that, for all it’s futility, we are both worriers? I insisted that we get in touch with her doctor from Phoenix, who is also a Link sister and was attending the conference. She agreed to come right up to see her in the hotel, and proceeded to give the most loving, and honest assessment of her situation that I can imagine. She said she didn’t like the persistence of the headache and other symptoms, and added that she was “worried.”. I heard in her voice the same concern that my husband, also a doctor, expressed when I shared the news with him initially. She shared hard truths, with me sitting there, like there were more tests to endure when she returned home, and that they had to in her words “had to rule out disease,” meaning spread of the cancer. We didn’t gasp out loud at least, but I think pink ink and I both felt punched in the gut. I wanted to cry, but have somehow resolved not to break in front of her because I know she needs my strength right now. At one point her Sisterlink doctor and I (who share the same name) double teamed her to say that she might need to change her plans for her return trip if her symptoms worsened, and she protested. We looked at her, shaking our heads, and said “really?? You’re not going to try to take on both of us..”. She laughed and pushed back with a strengthened resolve not to let this setback change her plans for her trip – and I’m glad to say that she got to do it her way. But you know you need girls with real strong backbones just in case you lose your mind at any point!

She got some rest that night thanks to some great meds, as did I, surprisingly. There have been so many nights in Chicago when I tossed and turned thinking about her and the unthinkable, but tonight, perhaps because she was just a few steps away, that I could rest, albeit listening for her breath. My first question in the morning was “Barb, are you ok?”.

Lest you think I was the only one taking care of somebody during our trip, pink ink literally talked me off the ledge (as she has done many times this year) when I found out that my oldest son had a seizure the evening before, my husband was at work, and I couldn’t reach him on the phone after several tries that morning to make sure he had taken his medicine. She encouraged me to breathe and prayed out loud with me, and … he answered the phone on the next call.

In the end, I’m so grateful for our time together, even as it wasn’t perfect – it was what we had. Most importantly, we got to share so many moments and to appreciate all of the ways that we’re linked together – from the respective phone calls from our daughters telling us how much they missed us, to the shrieking revelation in the hallway after introductions that one of her girls (and now mine too! – love you Joy!) from Phoenix was the cousin of one of my very favorite Link sisters in Chicago, to the coincidence that I would be randomly placed at a lunch table with one of her adopted “aunties” from her NY chapter. Sharing special moments with my big sister and her wonderful chapter members (who all adopted me as their little sister), and a too brief but heartfelt breakfast with my dear friend and younger son’s godmother helped to show me that there are even more links in the chain of friendship surrounding us and keeping us strong. We both landed and went right back to our lives, full of the looming tests for Barb sandwiched between caring for her husband and daughter, and my life tending to this complex, wonderful brood of mine. Despite the challenges, we were undeniably made stronger by linking ourselves together with those who we love and share this life with. To the enduring links in our lives…

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”.