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Navigating the Middle

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health

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.) 

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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.

chewiepillowBut 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.

Day +9: Just Beyond Ordinary

I began this blog three days ago, when I felt well enough to write. Unfortunately chemo-brain is real. And the lack of sleep, nausea and pain don’t fuel the creative process.

I could tell you all about my burning feet and palms, diarrhea, and trouble swallowing food. I could tell you it’s not pretty; in fact, it’s ugly. Or I could chose to focus on being thankful. Extended family, church family, friends, and neighbors have all stepped up to take care of me and my family. Jeff, my girlfriend Kelly, my sister Stephanie and my mom have all taken turns playing nurse and spending nights in the hospital. I call it a slumber party, which when I get my way, is mostly slumber.

I’ve even sparked a social life. My neighbors, T. – whom I fondly refer to as my twin (having received our transplants on the same day); and D. – who received her new cells Wednesday are both from the Maryland-Virginia area, have children, and had related donors. It’s good having them around. I would not want to do this alone.

Yet deep down, I’m somewhat envious of them. I cannot help wonder if having a related donor makes a difference. Unfortunately it was not a real option for me. I can only stress that the path to recovery following a stem cell transplant is no sprint. No cancer journey ever is. My marathon is more like a blinding race through an ever-changing topography that can create a ripple of panic through the spine of my medical team. Anything just beyond ordinary seems to solicit a need for more tests. The test du jour is a CT scan of my abdomen, which I have politely declined…at least for the time being.

Today, I will determine what’s ordinary and what isn’t.

Days +1, +2: Forever Changed

It’s been a few days since I’ve had the strength (or desire) to write. My hopes to blog throughout this process were outrageously, overly inflated. Words like “goal” and “will-power” simply possessed no power.

Here’s the recap:

Wednesday, August 3 was Day 0. The stem cells arrived, carried in a cooler by medical personnel.

IMG_0613

After checking paperwork and confirming the puffy, pallid-looking patient laying in front of them matched the proper name, date of birth, and medical record number…

 

…the donor cells were hung. Gravity stood between me and my new stem cells. Jeff and I prayed. The nurse stayed. The bag emptied in about 20 minutes.

IMG_0619

There was no reaction; no gagging or fits. It was, as it had been described to me, rather anti-climactic. I felt well enough to get out of bed and take a couple of laps around the ward that evening.

That was Wednesday, Day 0.

Since then, things haven’t gone nearly so well. BUT, today is Day +2, and I am able to write. Prayerfully, this is the turnaround I’ve been anticipating. Doctors have assured me that my symptoms are a result of the preconditioning regiment, of which they do not seem to be surprised.

I, on the other hand, have experienced many surprises. Given my history of cancer, chemo and radiation, I’d thought I’d seen it all. But this IS different. And more than anything, I am convinced that no matter what happens next or what has already taken place, my life has forever changed.

 

 

Days -6 & -5 : While Working on My Tan…

I didn’t write last night. Apparently, high doses of radiation can make a person sick. Coupled with the fact that the A/C in my room chose the most inopportune time to stop cooling and less than desirable hospital dinner, last night did not go as desired.

I had intended to write that Wednesday (Day -6) and Thursday (Day -5) would be fairly identical days, with radiation therapy beginning around 7:30 am., when an escort shows up with a wheel chair and blankets. Whenever I leave my room, I have to wear a mask for my protection. So I imagine I must look like a little old peasant lady being rolled about.

When I enter the radiation room, I give my name and birth date, although it is definitely the type of place where everybody knows my name. Next, I’m helped out the wheel chair and onto a hard, plastic table,covered with sheet and a very thin mat. Since my therapy includes a 20 minute “burn” on both sides, I like to start on my stomach where my face is squeezed into an uncomfortable plastic mold with cut outs. (Seriously, if anyone reading this could invent something better, you’d be rich!) Therapists  help position me by placing blocks to protect my kidneys and lungs and aligning my prison tattoos (i.e., the kind you make with a straight pin and ink. Don’t ask me how I know this.) I have to lay still while the table slowly moves across the beam of light. Afterwards, I flip over, and the process is repeated on the second side. I do this twice daily.

Laying there makes me think of a tanning booth.

Full disclosure: Everything that I know about tanning salons, I learned from the teenage-horror movie, Final Destination 3. There is a scene where two besties, Ashley and Ashlyn have a terrible mishap while lying in tanning beds. Once the beds’ temperature exceeds 350 degrees, the light bulbs pop, skin bubbles, and…you get the picture. Guess I need to change my thinking.

Second disclosure:Everything I learned about prison tattoos, I also learned from movies. Although I can’t prove it.

Tomorrow…chemo begins (my own personal horror movie).

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