Seatbelt fastened

“Fasten your seatbelts. It’s going to be a bumpy night.” Margo Channing in All about Eve

My latest IGM flare-up has been an emotional roller coaster. After my initial worry and the subsequent sense of acceptance, I began to experience anger. It began as a slow simmer while at work.  By the time I came home from this week’s biopsy, I was livid.  I was angry at the physical pain. I was angry at my body and its apparent ongoing weakness.  Mostly, I was angry at the behavior of certain individuals who conduct themselves with negativity, rudeness, and disrespect on a daily basis; I straight up questioned why they are well. I even said I could punch a specific person.
If Rambo hadn’t been present, I might have thrown a few things.  But those moments pass.
Then there was the waiting. It has been so hectic at work that I haven’t had the time to dwell on the possibilities. Once that call came through (of course it had to happen at work), there was the relief.  I am still cancer free.  But I still have an infection so the journey to healing continues. 
Faith is a must as I handle living with a chronic illness. One of my samba sisters had issued a Bible verse challenge nearly a week ago, a day after I discovered the lump. Every day I have shared a Bible verse on social media. These particular verses inspire hope in me while I reflect on my personal experiences. It has been a practice that has helped me focus on the positive.
One of the positives was meeting my new specialist. My previous specialist, known as the local expert of IGM, retired. Fortunately, I was able to get a Tuesday afternoon appointment after my Friday morning call. I rescheduled due to having the biopsy to Friday afternoon, always a good day to get good news. He is of the opinion that the infection I have is simply that and is not necessarily a flare-up. He did not recommend an additional round of antibiotics and is confident we can avoid invasive procedures this summer. He also said I could resume exercise so long as I stay aware of discomfort and pain.

My health may present occasional challenges but la vida continua(life goes on.) I had already planned to have my gall bladder removed in a few weeks so that will happen(see previous blog at June is full of M’s dance performances.  Carnaval with SambaFunk continues through various celebrations. As I was once told by King Theo, healing is mine! 

The other shoe drops

I suppose I forgot. With all the glitter and feathers and glorious, glorious purples all around us, I was lulled into forgetfulness. But that 20/20 hindsight soon kicks into high gear, especially when you’re waiting for an hour or more in a waiting room or examination room, and then I remember the clues. The twinges of pain Sunday morning and Monday morning. The low energy which I thought was a symptom of a ressaca do carnaval(post-Carnaval “hangover”, quite similar to the post-race blues I experience after half-marathons). The inability to sleep on either side without discomfort Thursday night worried me most. Friday morning it became all too familiar. 
I am so in tune with my body now that I know when something has shifted. So in saying I forgot, I have not forgotten that my health must come first. I remember to take my daily pills. I know to call the doctor as soon as I notice something. I know to take the earliest appointments. I remember the pain and its accompanying emotions; I can admit I purposefully let go of my memories of those. Now I accept them. I let the tears fall, if only in the safety of my car in the hospital parking lot. I ask the questions of God and my body, if only in my head.
Since my last relapse, I have learned how to better manage my illness. Through the work I did with M’s wonderful counselor, I know to keep any negative emotions or serious conversations about my health private, shared only with Rambo or other adults. In terms of my physical health, I know the next steps well and can mentally prepare myself for the physical discomforts that may result. I know to pray and pray some more. I know to ask for prayers. 
This morning, I registered for my 16thhalf-marathon to be done this November. Because I know to move forward.  

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. 

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.

The newest name in the family Litany

M and I have said nightly prayers since her infancy. This past year, we began reciting the Rosary daiily on commutes and long drives.  We also pray various versions of litanies, some short and some long, but also a daily or nightly practice.
In light of my recent illness, I have discovered Saint Agatha, a Sicilian martyr tortured to death by a vengeful man she rejected. Due to her most infamous punishments, she is now the patron saint of breast cancer and breast disease.

The two paintings depict the wounds that are often associated, sometimes implicitly, in art featuring St. Agatha. One of the most famous is “Saint Peter Healing Saint Agatha,” a 1614 painting by Giovanni LanFranco that shows a traditional St. Peter tending to Saint Agatha’s wound, a gash over her right breast. The modern painting depicts Agatha’s wound as tradition has often indicated, a complete mastectomy on the right.

While some may argue that these images are distasteful and grim(and I won’t deny that many of the stories of martyrs are violent and dark), our tradition holds that we can seek solace in knowing that other people of our faith endured trials and tribulations.  I personally sought out a patron saint with whom to connect during this experience with breast disease. It was one of my many ways I have faced this challenge with strength and faith. 

Saint Agatha, pray for us.