Friday, June 27, 2014

Emancipation

“…The exquisite realization of health;
O I say these are not the parts and poems of the Body only, but of the Soul…” Walt Whitman

“No tears, no time to cry
Just makin’ the most of life” As sung by Mariah Carey

"I sing because I'm happy
I sing because I'm free..." Civilla Martin and Charles Gabriel 

Lately, I have received good news about my health with little fanfare. No jumping and down. No shouting. No fist-pumping or high-fiving or end zone-dancing.  I think about it.  Instead, I take it in and breathe.   All that training in mindfulness is put into practice for several moments of serenity.  It has made these milestones sweeter somehow. 

In the last two weeks, I took on a new role.   While resuming my professional duties, I also became my own nurse. My morning routine once again shifted to include a wound care session.  Every day, I gathered my supplies: mirror, scissors, gauze pads, wound cleanser spray, and a Muppets bag M got at Subway containing skin protectant film, swabs, large Band-Aids, and Aquacel dressing.  I would remove the previous day’s bandage and shower (oh the joy of a real, warm shower without the incessant beeping alarm or the soggy plastic bags). Then I’d pack my own wound and tell my body to heal, heal so I can be cleared to travel and cleared to exercise. Once a week, I would take measurements as my home health nurses used to do and I began to see rapid progress.  Even before yesterday’s appointment, I knew I would hear good news.  Still, it was nice to hear my nurse say, “You’re free.” 

Of course, this journey is far from over. I will continue to dress my wound with topical ointment. My wound will close in a week or two. The scar from my surgery won’t heal for several months. I will have to be aware of any changes in my body, to see if the IGM is responding to my daily medication. In the immediate future, I will resume exercise to regain muscle and cardiovascular fitness.

I know I could have tied on my new running sneakers last night and gone out for my first run since February’s Superbowl Sunday 5k.  I know I could have worked out this morning.  But as with the removal of the Wound-Vac, the removal of the wound packing felt odd.  As before, I felt vulnerable and exhausted.  I slept better than I have in a few weeks.

 This morning, Rambo and I watched a movie about the end of the world and how one family faced it with serenity and with love.  Because along with wound care technology and the quality medical professionals I am fortunate to work with, I know I have made it through this experience  because of my will, the love of my family and friends, and the serenity that comes with accepting God’s grace. 


All is blessing.  

Thursday, June 12, 2014

A big bear hug


I did not samba in the parking lot when I left the hospital yesterday afternoon. In my mind, I pictured myself joining the roda. That celebration will come in time; perhaps after these first two weeks of being Vac-free.  But my good news wasn’t real until I saw my daughter. The look on her face was one of genuine joy, hope, and gratitude.  Our hug was one of homecoming. 

After 44 days, I’m no longer attached to Mr. Backpack. I will be slowly resuming my normal routine.  I will return to work Monday. I’m still restricted from exercise: half-marathon training and SambaFunk classes are on hold until the doctor sees more progress in my healing. My wound is not closed but is 1.5 centimeters close. The surrounding skin, sore and blistered from weeks of adhesive tape and air-tight sealants, will need to heal.  As for the cosmetic healing, that will be a longer process, six months or more and one I choose not to ponder for now. 


Strangely enough,  after the Wound-Vac was turned off, I felt exhausted and experienced a level of pain I hadn’t felt in weeks.  I didn’t let it intimidate me. It is my body's turn to take over the healing process. I will continue to take my recovery one day and one moment at a time.  Lots of bear hugs won’t hurt. 





Monday, June 9, 2014

My youngest dance teacher

When she steps out on the stage, she smiles widely and shows off her dimples. She looks out into the crowd with such joy and love that I often wonder if she can’t see her father or her grandparents through the stage lights or bright sunshine. She is dancing in the moment.

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These past four months haven’t been easy for M. She has struggled with behavior issues at school. She has pushed back at home. Focusing and listening have been challenges.  As much as we have wanted to shield her, M has had to deal with the new normal in our household.  Most nights, she prays for Mommy to feel better. Though she nicknamed the Wound-Vac, she looks forward to its departure so she can give me a real bear hug.  It is both inspiring and heart-rending to watch her deal with these changes. She is one tough little girl.  I learn from her daily.  


I am grateful she shares my love for dance. She can forget her worries when she dances.  She deserves those moments.  


Sunday, June 8, 2014

Why them and not you: a short poem

Why them and not you

Because they love me
Because they love my child
Because they see the real me
Because they value me
Because they pray for me

See, we have no connection
We as in you and I
We are bound by obligation and duty
We have been told it must be so
But I refuse to choose you

I choose them
With them, I am part of an us
We are part of a family
We embrace and cherish

We hold

Fifteen reasons to pray

What I miss:
Bear hugs with my daughter
Running
Dancing
Feeling completely clean
Getting up from sitting without having to carry the vac

What I won’t miss:
Bandaging
Blistered, irritated skin
Pain
Knowing my daughter is suffering from stress
Being disappointed by others  

What I appreciate:
Being infection-free for five weeks
A renewed sense of humility
The love of my immediate family
The unflagging and unconditional support of my close friends and dance community
The opportunity to value the blessing of health

Saturday, May 24, 2014

Anchors: They Weigh


“Bag lady you gone hurt your back
Dragging all them bags like that
I guess nobody ever told you
All you must hold on to
Is you, is you, is you “ Erykah Badu, Bag Lady

“Until then I am a red balloon, a balloon tied to an anchor.” Sandra Cisneros 


I have been wearing a wound-vac since Tuesday, April 29th or for 25 days.  In those 25 days, I have learned how much I miss daily exercise, wearing any clothes I want, and showers that don’t require waterproof tape or plastic wrap.  M has named the wound-vac Mr. Backpack. Mr. Backpack is attached to me 24/7, whether I am sleeping, enjoying my weekday Sex and City marathons on E!, or going out to our now-once-a-week family dinner(he gets his own chair.) I even made up a silly Mr. Backpack song to the tune of "Mr. Sandman." All was going well with the new member of the family until I visited my surgeon for the first time in two weeks.  Yesterday, my doctor decided to keep me on the Wound-Vac  for two to four more weeks.  I didn’t take the news well initially.  I cried, raged, and moped. I considered reading the Book of Job again. But today I have accepted the news.


A wound-vac or wound-vacuum is a machine that provides vacuum pressure on a wound within a sealed bandage. Think of it as a Space-Bag to prevent infection and promote healing. (For those of you who don’t know or remember the TV commercials, Space-Bags are gigantic Zip-locs for storing blankets, sweaters, and other bulky items  by vacuuming out the air and increasing your storage space.) 


As I did throughout my illness, I did Internet research to learn about wound-vac, particularly about others’ personal experiences.  My experience has been positive overall.  Home health nurses visit me three times a week to change the dressings. Thanks to a prescribed painkiller, which takes effect in a quick twenty minutes, I don’t feel a thing(of course, then I’m really mellow but unable to drive for about three to four hours.) One of the key aspects of a dressing change is the measurements taken. The wound’s length, width, and depth indicate the rate of healing.  So centimeters matter.  My wound is healing.  I am understandably impatient. 


I had built my life around keeping busy.  Being on the Wound-Vac has made me remember that life happens. While I can do my best to shape and structure my lifestyle, life itself will go on, often times with events and experiences beyond my control.  That is why the wound-vac has become my teacher in humility.  Take the news from the doctor. I wanted to return to work on schedule. I wanted to parade vac-free in Carnaval this weekend. I wanted to jump in the shower, be in there for ten to fifteen minutes (yes I realize we’re in a drought), and wash and condition my hair.  Maybe do a samba step in celebration.  Instead I’ll be devising some bling for my vac bag and waving from a parade float. I will continue live my life differently for a few more weeks with my three-pound friend on my shoulder.  


Mr. Backpack, bring me a dream. 

Wednesday, May 14, 2014

Yes, another acronym


The morning after Valentine’s Day, I had finished my morning cardio workout and was going to head into the shower when Rambo (the artist formerly known as Blues) gripped me in his viselike bear hug.  I finally managed to escape and mock-whined about the pain he had caused. But as I got ready for my shower, I did notice twinges of pain.  I did a self-exam and found what felt like a small, hard mass. With heart pounding, I returned to our bedroom where I asked my boyfriend to confirm my suspicions. Yes, there was a lump. Yes, it was painful.  I immediately called the advice nurse and I was booked an appointment with the breast clinic. My surgeon felt it was a benign cyst but I would still undergo a mammogram, ultrasound, and biopsy. 
Due to my hectic work schedule and my usual desire to power through it, these tests were delayed by about a week. By then, what was a tiny lump became increasingly painful and swollen. I began to experience a low-grade fever.  Life went on as usual, despite my overwhelming fear of breast cancer and my overall fatigue.  To complicate matters, the biopsy site became infected and after two rounds of antibiotics, I had to undergo an incision and drainage of the abscess.  I was back at work the following day despite the pain, with antibiotics and gauze dressings in tow.  By then, a second surgeon had been consulted and I first heard of IGM, idiopathic granulomatous mastitis. 

IGM is a rare disease.  It is similar to mastitis which affects nursing mothers. The I in IGM means “I don’t know.” Researchers have yet to pinpoint the causes. Some women with IGM, like me, nursed their children between two to six years prior to experiencing symptoms.  Some may not have had children at all. It’s an “I don’t know.”  What is known is that IGM is a chronic condition like gout or arthritis. It won’t respond to antibiotics because it’s not a bacterial infection. It is an inflammation of normal tissue which can flare up. I had done some online research but I hadn’t yet been given an official diagnosis. There were plans for a possible lumpectomy if the symptoms didn’t clear. 

I had stopped dancing with SambaFunk because of the pain of infection. However, as soon as I could after my first outpatient procedure, I was back in class, bandaged but determined to prepare for Carnaval. I resumed exercising daily.  Work had never let up so I continued to balance the various demands on my time. Every day, I changed my dressings three times a day.  Every day, the wound was not healing. Though my biopsy had shown no sign of cancer, I worried about my immune system. Was I pre-diabetic? Was something wrong with my white blood cells?   I checked in with my surgeon via email and by phone but I failed to demand to be seen again. Follow up appointments were rescheduled and canceled. I was too focused on my work obligations to put up much of a fight. 

The weekend before I was due to leave town for a school accreditation visit, I noticed pain in my ribcage after my morning workout.  Upon inspection, I realized the pain was radiating from my original wound.  I called the advice nurse.  She booked me an appointment with an emergency room doctor.  That doctor took one look at my wounds and said she needed to call my surgeon who happened to be in the OR on a Sunday afternoon.  When she asked that I be transferred to the ER as a high priority, I knew I wouldn’t be leaving town. My surgeon, dressed in OR scrubs, came to see me and said I would be undergoing emergency surgery the following morning. 


The good news is I don’t have cancer or diabetes or any other major illness. I came home on schedule Wednesday evening.  I was placed on medical leave for four weeks and I have been wearing a Wound-Vac machine 24/7 since the day after my surgery.  I am now being treated for IGM with anti-inflammatory meds. For the first time in months, I am not living with an infection.  I miss dancing and exercising but I know that soon my body will heal and I can resume these activities.  More importantly, I’m finally taking time for my health.