I’ve Been Here Before

While we’re sheltering in place and trying to maintain that magical 6-foot distance whenever we leave our homes, I’ve been experiencing a little Déjà vu. Four years ago, I spent more than three weeks in a hospital room at the University of Maryland Medical Center preparing for and receiving a stem cell transplant. That was followed by nine months of at-home confinement with the occasional outing, wearing a face mask and gloves. Sound familiar?

So staying home feels not-quite-so-uncomfortable for me. Here’s how I coped then and how I cope now.

Grieve and then be grateful. I’d barely stopped grieving the loss of body parts, my hair, and relationships when the cancer returned. Now my doctor was advising a stem cell transplant, which meant more. More radiation. More chemo. More hospital time. I could not begin to imagine what nearly a month of being sequestered on a hospital ward would look or feel like. Fear surrounded me. But one day, faith punched a tiny pinprick of light that showed up in the form of gratefulness: someone, somewhere in Europe had agreed to donate his stem cells. I had husband who advocated for me when I couldn’t speak for myself. I even appreciated another patient’s spouse who donated more puzzles than I could possibly assemble during my stay.

COVID-19 restrictions makes us keenly aware of what we’ve lost, if only temporarily. And we’re grieving because of it. But if you’re at the point of acceptance, it’s time to open up to the possibility that cultivating gratefulness can also make us aware of what we have. I’m still grateful for the people out there fighting for our health; having a husband, who has stepped in to help more around the house; and although my family mysteriously disappears whenever I mention the word “puzzle,” I am thankful that they will accept my invitation to play UNO or poker.

Set an intention. At the beginning of each class, my yoga instructor would ask everyone to set an intention for that morning’s practice. I planned for yoga to be a part of my hospital stay until a friend admonished me not to lay on that “nasty” hospital floor. So I dumped my mat and instead, carried the practice of setting an intention. For three days I maintained a focus of peaceful during morning and evening full-body radiation therapy.  Other times, I failed to show up in my vulnerability because I was more concerned with making other people comfortable.   

Setting an intention takes your thoughts and shapes them into the way you want to show up. And it’s important that you make that decision, especially in the face of COVID-19. Tonight, I will be attending a memorial service via Zoom. A sweet woman I once worked with recently lost her son. I knew and like him. It’s been heartbreaking to read the posts of a grieving mother. I’ve written her a letter trying to bridge the distance with words of compassion and connection. Tonight’s intention is very much the same: show up in love.  

Embrace the new normal. A life-threatening disease of any kind can fissure life into parts. For me, it’s BC (before cancer) and AC (after cancer). I’ve lost things that I will never fully regain, but not without a fight. No matter what we endure, life does not wait. Battling an invisible enemy intermittently for seven years didn’t stop the invention of the iPhone or slow the global population from surpassing 7 billion. Life never rewinds to the “old” normal; yesterday is the old normal. The “new” normal is constantly being ushered in. Go ahead and make peace with that!

Our collective new normal may not resemble the old way of life until we have a vaccine for this current pandemic. What will that look like? I’m not quite sure. But whatever it looks like, we humans have a huge capacity to create, learn and adapt. The reality of our time spent quarantined, self-isolated or under stay-at-home orders is how we chose to use those moments within our negotiable limits. None of us has as much control as we would like, but when we chose to live with gratefulness, intention and acceptance we will all be better prepared when we finally reintroduce our new selves to the world.

Like I said: it feels like I’ve been here before.

The Power of a Single Moment

There are times when I can’t help but return to the scene of the crime (my first cancer diagnosis nearly nine year). I can travel there a number of ways, but today I quietly crossed its path during a major household purge. Tucked away in a basement bedroom were the words of support I received from you so many years ago. I began (re)reading them and instantly knew they had laid dormant far too long. They were meant to be shared…again.

Maybe you will recognize the words from a card or letter you sent. Or they might be the words your soul has been craving, but you hadn’t realized it. My hope is that by sharing, we will discover TOGETHER the power of words to heal, uplift and encourage.

Here’s the first one:

Believe in the promise of each new day and the healing, hope and beauty a single moment can hold…

 

 

 

Last July I Disappeared

I think I am finally ready to publish this.

Re-entry is harder than I thought it would be. You’d think that nine months following my transplant, I’d be eager to “get out there.” But the truth is, it causes me a bit of anxiety each time I imagine being surrounded by people, especially people I know.

This may sound counterintuitive, but strangers don’t know “my secret” and don’t care. On the other hand, the people who know me have been willing me back to health, and I don’t want to disappoint. I smile, sometimes pretending. Even now, my need to please others is at the expense of resembling how I genuinely  feel.

I don’t fault them, everyone is so happy to see me doing better, looking normal. It makes them feel better.

I feel…

…CRACKED.

It’s like a tiny fissure appeared when I went away last July. Friends either took flight; became overly concerned with my health, or were more concerned with expressing their distress over a “weave-gone-bad.”

Maybe those cracks always existed, but I experience them like small tremors now.

Except for my most intimate of connections, I am detached like I’ve fallen off a ledge; my shattered parts spilling out from beneath me. I doubt myself…a lot. I distrust my decisions, my next move.  FOR SOME REASON, LIFE CHANGED WHEN I LEFT!! And I find it hard to integrate back into a world that seems to spin faster now.

So until I reappear as another version of my former self, I will learn to be patient. Realizing that while my recovery might look complete, it is yet beyond my grasp. It isn’t as distant as it was several months ago, but I am still isolated; feigning a smile; and fighting to maintain. My inner self struggles to find the women it fully recognizes.

This may take a while.

 

 

Apparently the Pixie is In; Here’s What’s Out!

I don’t spend much time on my hair. (No surprise there.) Yesterday I learned that the pixie cut had made a comeback…again. It seems that Kristin Stewart and Katy Perry recently got new dos, so now we have permission to rush to the salon and take it all off. One stylist even commented, “The pixie looks good on every face.” I doubt it.

Still, I was kinda stoked to discover that I was actually on-trend! And to think, I nearly bought into the belief that women of a certain age couldn’t be trendy. But for the moment, my hair is on-point…that is until it grows out OR until the next celebrity hair trend craze. Bear in mind, I came by my pixie the hard way: I lost my hair three times. Thanks chemo. 

I’ve survived breast cancer, Waldenstrom’s Macroglobulinemia , non-Hodgkin’s Lymphoma – twice, AND I’ve had a stem cell transplant.

The only hair style that is truly wash ‘n go is a bald head. Even a pixie cut requires hair products. So when a news story about the limited options of less-toxic personal care products marketed to black women appeared on my television, I took notice. More than 75% of products marketed to me scored high in potentially hazardous ingredients. This doesn’t mean that “our” products are the only ones with potentially dangerous chemicals. What it means is that products marketed specifically to black women offer fewer choices when it comes to selecting and purchasing less hazardous products.

Fewer less hazardous choices? Do you have any idea how much money we spend on our hair? I don’t know either, BUT I know it’s a lot. If you’re a black women, I’d be willing to bet that you have more hair-care products than most of our non-black sisters. In fact, I had no idea how many products I owned until I started counting: 20+. And I barely have hair!

Which made me question: Were my hair products making me sick?

While I am unable to answer that question definitively, I did take a look at an EWG’s (Environmental Working Group) analysis of more than 1,100 products marketed toward black women. I was especially interested in hair care products. Then down the rabbit hole I went, diving into the recesses of my under-the-sink bathroom cabinets for products I had not used since last July and beyond. They were still hanging out in tubes, jars, bottles and packets. I gathered them up and carried them downstairs to my laptop  where I opened EWG’s website. So without further delay (i.e., or boring you with my analysis), here is MY bottom line.

I am tossing about 50% of the products I researched, not because I don’t like the way they feel or that they don’t work. I am throwing them away because I don’t trust the potentially harmful effects these ingredients could have on my health. And not all of these products were marketed exclusively to African American consumers.

Cancer is complicated; a hair style is NOT. I don’t think that I “got cancer” because of my hair care regime. But I am wise enough to know that if I can avoid certain ingredients that may pose a cancer risk, I will. My pixie cut may not look as groomed, but that’s a risk I am willing to take.

*(EWG is a non-profit, non-partisan organization dedicated to protecting human health and the environment.) 

Best Christmas EVER!

It’s New Year’s Eve, and I can’t help but look back at the year and happily wave ~ “b-bye.” As you can imagine, there’s no love lost between me and 2016. January began with a biopsy that confirmed the Non-Hodgkin’s Lymphoma had returned and was followed by twice-weekly chemo over the next five months. July 26 I entered the Allo Transplant Unit and two weeks later I wheeled out so fast I completely forgot to don the required face mask.

September and October meant numerous trips to and from the hospital each week for blood work, transfusions, infusions, imaging and routine checks. Fortunately by November, the time between visits had lengthened. I got my flu shot and a pneumonia vaccine, which gave me a bit more confidence to venture out. So by the time December rolled around, I began negotiating with providers concerning what I could do/what I couldn’t do in the future. It was really hard to hear that it would be a full year post-transplant (August 2017) before I would have my doctor’s clearance to resume life, in other words, my new normal.

By any stretch of the imagination, 2016 was definitely not the year of Dee. But there was a light near the end of my tunnel. Christmas was fast approaching, and I wanted, I needed the family to make new memories to replace the old ones. But with our eldest flying to the West Coast on the 27th and public school closing the afternoon of the 23rd, we had little time for all the plans I’d made. I had to get creative. We crammed days of activities into one: seeing a movie; having lunch; and gathering around the kitchen island to make peppermint bark; bake Chex Mix ; and simmer “real hot cocoa. It tasted and smelled like Christmas.

But this was the Best Christmas EVER!

You know – that Christmas when you tear open a box to reveal the perfect present that you asked for, but didn’t know just how much you wanted it UNTIL you finally got it. Remember Ralphy in “A Christmas Story?” Magical, like THAT, but at an age when you don’t think you’ll ever experience another magical holiday. Your kids are teenagers; you’ve witnessed another season of commercial crap; and almost nobody says “Merry Christmas.” It may look like Christmas, but it doesn’t feel like it inside.

Until the unimaginable happened.

The kind of thing that takes a nano-second for your brain to catch up with what your eyes have just seen – and one of them has GOT to be lying! Because when I looked up, it didn’t immediately register that my mother and my sister were both standing in my family room, having flown in from Houston to surprise me on Christmas Eve.

Did I mention this was the Best Christmas EVER??!! No gift, no amount of money could have produced the joy I felt during the 48 hours of their visit. Apparently I’d been asking my sister for a Christmas visit for the past several months. I just hadn’t realized it.

Sometimes, we get exactly what we want for Christmas before knowing how much we want it. Sometimes the year doesn’t end as bleakly as it began.

Thank God!! and Happy New Year!

Day +78: Because You’ve Asked

White Blood Count – Normal Range
Platelet Count – Climbing
Bone Marrow – Normal
Stem Cell Engraftment – 100% Donor
PET Scan – No Evidence of Disease (NED)/no uptake

Allow me to translate. My post-transplant progress is going well. “Well” as in – in good health; free or recovered from illness. On Day 78 of 100 (aka the early recovery phase), I am still required to visit the transplant center regularly, but not with the frequency of 2, 3, or 4 times weekly. For the second time since being released from the hospital over two months ago, I will not have to see my doctor or nurse for an entire week. THANK GOD! And as my immune system matures and improves, the amount of time between visits should continue to lengthen. I look forward to the day when I only visit my doctor annually for a routine follow-up.

I’ve also been able to drop some of the drugs from my a.m. and p.m. lineup. Instead of an “all time high of 16 pills/day,” I’m down to 11. Fewer drugs mean, fewer side-effects. Watch any drug-marketing spot on TV, and you’ll hear the disclaimer of all the side effects the drug can cause. It makes you second guess whether you’re better off with the illness.

And then there’s also the weird science behind assigning which drugs can be taken and which drugs should be avoided. For example, I recall having a conversation with my nurse about the toxins in nail polish v. the toxicity of the many hospital drugs I was already receiving intravenously. Then I was told that if I got a headache, I could not take ibuprofen or Tylenol, but could take Oxicodone. But what shocked me most was my nurse explained that while my husband and I are not allowed to kiss, we are allowed to engage in adult activities, as long as we use condoms. WHAAAAAAT???

Yes, each day is an adventure! I might not have called it that BT (before transplant), but I realize it now. And that 100-day early recovery bubble that I’m in, is merely a guideline-  one that my doctor recommends I follow until after flu season. (…in MARCH!) When I questioned Dr. H. about her strictness, she was clear. “My patients who listen to me, don’t get sick.”

So for now, it looks like I will be continuing my hand washing-, crowd avoiding-, mask wearing-, shotgun-riding vigil. I’m wearing nail polish. I’m not taking Oxicodone which makes me sick. That’s all I’m saying, except this…

Enjoy your weekend. I’ll try to post more frequently now that I have more free time.

Today is a Day Forward

My sister Stephanie got it right when she mused, “When you’ve undergone a major surgery or something like you’ve just experienced, it’s good to remember that recovery is like taking two steps forward and one step back.”

Before hearing her words, I hadn’t stopped to consider that I’d feel okay one day, and kinda lousy, tired or both the next. The passage to recovery is a suffocating struggle against waters so deep, at times my feet don’t touch the bottom; at other times, I’m buoyed by the current. I can imagine where I’d like to surface, but the way up is unclear.

At times like this, it’s important that I talk to myself,
to remind myself of all the progress I’ve made in just over two weeks of being at home. So here goes:

1. I’m eating so much better now that I can choose what I eat and it isn’t being prepared in a prison galley.
2. It no longer hurts to swallow pills, which is a good thing. I usually have to swallow at least 12 pills/day.
3. I can walk around without shoes, a real joy for me since I love being barefoot. (There was no way I’d allow my skin to come in contact with a hospital room floor.)
4. I have better cable at home. Even HGTV gets old when you don’t want to Love It or List It, Flip It, or Fixit Up.
5. My world has expanded from a mere hospital room with a bathroom. I have an entire house to move about. Although out of safety precautions, I choose to stay out of the boys’ bedrooms.
6. No one wakes me in the middle of the night…unless it’s my bladder.
7. My hair has finally stopped falling out. It hasn’t started to grow back yet, but I don’t have to worry about going to sleep with a regular pillow and waking up to a pillow case disguised as Chewbacca.

But the very best part of being home is spending my days and nights with family. Because even the worse day at home is better than an afternoon on the BMT Unit.

 

 

 

Day +14: Returning Home

I am so happy to be home.

There is no better place for me to recover the next 100 days of my journey. I have my family in one place; can sleep in my own bed; and don’t have the constant interruptions of nurses and techs throughout the night. My taste buds are returning to normal, and although I am fatigued, I know that this too shall pass.

Like a fading memory, I recall being pushed in a wheelchair, through the double doors of the negative pressured BMT (bone marrow transplant) Unit and not looking back. It was the first time I’d been beyond those doors since Day -5 of my hospitalization.

So, for the next 100 days, I have the following marching orders: NO public transportation, restaurants, alcohol, sick people, and crowds.YES to covering my mouth with a mask; using hand washing/sanitizing; and to contacting the transplant help line if I develop one of any number of symptoms. (Kinda sounds like dealing with a toddler, more “NO, you can’t” than “YES, you cans”.)

It is a far cry from my early days in the hospital when I questioned my commitment to receiving the transplant. I am light years away from barely being able to raise my head from the pillow or eat solid food. I can get out of bed, everyday, with my own strength. And I go to bed knowing, that while I might not get uninterrupted sleep, at least I won’t be dragging around Cinnamon – my infusion pole.

I’m finally home, trying to shake the memory of the entire 22-day hospital stay. I assumed the past three weeks would be automatically erased at the sight of my family and being home. Instead, it’s a process, one that I expect will become easier with each passing day.

 

Day +12: Early Release?

Time in the hospital has felt more like being in prison. It started when I got jail-house tatts before being locked down and confined to my cell. I’ve donned the uniform (AKA the peek-a-butt hospital gown); and had my three squares a day. By default, I’ve joined the bald head gang, housed here on the BMT Unit cell block.

Workouts include walks around the yard (i.e., the ward) or trips to the relaxation room which offers a computer, reading materials, a treadmill, stationary bike, and a set of stairs. Sorry,  I don’t have the prison body to show for it.

Incarceration comes with forced visits from techs,  nurses, integrated medicine experts, a nutritionist, and doctors from different disciplines.

Nearly three weeks into this, I still haven’t quite figured out who the warden is. But I think it’s Dr. K. Yet, for some reason, he seems reluctant to claim the title. Maybe it’s because I’ve threatened to cut of my hospital arm bands and escape “SHAWSHANK” style, which turns out, may not be necessary after all.

It looks like I will be getting out ahead of the projected 25-35 schedule. I’m calling it an early release for good behavior. When I find out my release date, I’ll share it with you. You’ve been so loving to follow my progress.

In the meantime, I thought I’d share a few pictures from inside my cell.

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*The use of neither coffee nor whiskey is responsible for the securing of my early release.