Sunday, July 31, 2011

Observing the beauty and the miracle of life...

Humanity at work

Out of the blue I received a Facebook message from a 14 year old young man living on the other side of the world, recently diagnosed with Hodgkin's Disease and doing chemotherapy. He wrote me, not for advice, or to whine even. His message to me was "NEVER GIVE UP!" This is HUMANITY at work! I feel so blessed!

Note to self when facing C...

(Note to self) When Facing C: Keep your head held high, remember all the reasons you have to smile, and wear your Captain America T-shirt! :)

Friday, July 29, 2011

Cancer will not make me, but I'll make art out of cancer.

The Haitian and the African in me makes me able to overcome all odds. My spirit is resilient. Cancer will not make me, but I'll make art out of cancer (Self-portrait--OM)

1st Chemotherapy Treatment--The Experience

I awoke to a beautiful, sunny Thursday morning and sort of followed my normal morning routine: make coffee, watch the news, the weather forecast and quickly returned a few emails and Facebook messages. I put away some laundry I had done a couple days prior and straightened up a bit. I wrote in my journal about my upcoming chemo treatment, then shut everything off and meditated for a few minutes. I packed my bag with various medications including the chemo medicine Bleomycin and the all important anti-nausea medication Zofran. I also packed my laptop, some light snacks, and magazines.

I must say, I really didn't have any anxiety about starting treatment. In fact, I wanted to get it started because once I did, I would be that much closer to healing. "Baby" and I left together and talked a bit about the process on the way to the docs office. We have such a great relationship, and relate on so many levels and as best friends which makes all the difference in the world.

Once we arrived at the doctor's office, I was greeted by the nurse and front desk staff and shortly thereafter, called to the small lab to have my blood drawn. Monitoring my blood counts (especially my white blood count) while getting chemo is of the utmost importance. If my white count drops too low, it can leave me susceptible to infections which will only complicate things. The lab technician complimented me on my "new look", and I told her, I prefer it this way. I really have grown to like having a shaved head. It's funny because I remember the process of coming to a decision to shave my beloved locs off and how painstaking that was. Now that I had crossed that hurdle, that seemed like small beans in comparison to the next step--beginning chemotherapy.

After the bloodbwork, I was ushered into the doctor's office for an examination. All seemed well on the surface and he told me that though I was a little anemic, my white blood count was holding up ok. Next thing I knew, the nurse was bringing me into the infusion room and I sort of panicked a little. Suddenly, things were moving a little too quickly. Added to that there was another older woman woman already in the room getting infused with chemotherapy. I got dizzy for a moment, and the nurse gave me some water and assured me that everything would be ok. The Nurse introduced me to the woman being infused as Joanne (not her real name here) and began accessing my port and infusing me with IV Zofran, an anti-nausea medication. She stepped away and left Joanne and I to ourselves and IV machines pumping medications into our ports.

Joanne was a nice looking and friendly caucasian woman in her late 50's. She could tell this was all new me. She sat in her chair like a veteran to this disease but she seemed bathed in a protective light, and comfortable with the process. We exchanged diagnosis stories, symptoms, treatments, etc. Johanne shared with me that she had been diagnosed with Non-Hodgkin's Lymphoma in 2009. She was in remission for all of 2010 but in january of this year her lymphoma came back and she had to start chemotherapy all over again. I felt sad for her, but also a sense of pride for how she was taking everything in stride. She really seemed calm and was looking forward for her treatment to be over to go home and see her husband and grandkids.

About half hour later, the nurse came into the room and gave me more IV anti-nausea medication. This time it was Ativan. Halfway through this treatment I began to feel high and joked with the nurse that "this isn't such a bad feeling. Can I have more?" We all laughed and suddenly I had a feeling that everything would be ok. After the Ativan was done she hung a large bag of normal saline and began pushing the first chemo medication (Adriamycin) through the IV at a slow rate. Then the second, the Bleomycin that I had photographed and brought in with me. The medications are given in intervals so they can pinpoint which ones are making me have reactions.

At that point, the nurse announced that my dad was here. It's so good to have a father so present and so loving in my life. I felt blessed to have so much love and care around me. My dad had a suitcase with him (no joke) loaded with Haitian patties (pate), fresh fruits, water, juices and various other snacks. The nurse had me change rooms to a larger infusion room to accommodate my dad and baby. I bid farewell to Joanne. We wished each other luck and I wondered if I would see her again, or even if seeing her again would be a good thing given the circumstances.

In a larger infusion room, everything seemed to go well. Baby brought the Phantom of the Opera movie DVD (I love the broadway show and movie) that I watched on the laptop while my dad did crossword puzzles. The nurse came in at regular intervals to infuse me with more chemotherapy and saline solutions. Everything was going well. I was thinking to myself, "wow, I can really handle this." The last IV solution I got was Zofran, the anti-nausea medication. Halfway through this bag of medication I started to convulse and shake uncontrollably with severe chills. We called for the nurse who ran in and applied three heavy blankets on me. My teeth were chattering so bad I thought they would break. My leg muscles became so sore from tightening because of the chills and I was short of breath. In my mind, I knew what was going on, but I was caught off guard by this reaction which lasted for about fifteen to twenty minutes. Baby and my dad rubbed my legs in an effort to keep me warm by friction in addition to the three blankets that were put on me. The nurse gave me Tylenol and explained to my concerned loved ones that this was a common reaction, most likely from the Bleomycin, the chemo medication that I had photographed, and that it should subside in some time. That was all well and good to her, but it wasn't a good experience for me!

As the chills began to subside, my partner and I were able to create the scenario for what was going during the time the chills were going on: My body is the battlefield and the chemo drugs were armed soldiers going in and searching for and attacking the cancer cells. They were in a fierce fight in my body. The cancer cells were caught off guard by these troops entering the battlefield for the first time. The first stage of war was happening and my body shaking and convulsing was as a result of all the bombs exploding at the cancer cells. Made perfect sense to me!

Finally my treatment was over, the chills were gone. I was left with extreme fatigue, so much so I couldn't talk or move much. I did experience unpleasant GI side-effects, nausea and fever in the evening, but was able to have a light dinner and went to bed early. Today, after a good night sleep I feel MUCH better, though still tired, but I believe I can do this. I will continue to fight and do what I have to do to get though this. I am on the road to healing. My next chemo treatment is in two weeks. Thanks again for all of you joining me me on this journey and for your support and good wishes along the way. It definitely helps!

Tuesday, July 26, 2011

New Reality, New Phase --Tomorrow (Thursday) is my first chemotherapy treatment

Here I am one day away from entering a new phase of my new reality---the start of my chemotherapy regimen to rid myself of Hodgkin’s Disease. I must admit, I’m eager to start because once I do, I will be that much closer to healing and getting rid of cancer. Once I start, there will be no turning back, only looking ahead to getting to the other side of the this disease. However, I do some anxieties around facing potential horrid side effects from the chemo. Naturally, I will enter my treatment with a positive attitude, but I am only human. It wouldn’t be normal if I didn’t experience any anxiety.

I’ve already nipped one potential side effect in the bud---hair loss. Well, sort of. I did shave my locs off because I didn’t want to give the chemo a chance to rob me of them. But there is still the potential for facial hair loss; eyebrows, eyelashes, mustache, beard, everything. Again, I’m staying positive, but I also have to be realistic about the possibilities. Other side effects of chemotherapy may include nausea, fatigue, loss of appetite/taste buds, peripheral neuropathy and others I won’t get into. Just know that while my chemo treatment is effective in killing off the cancer cells, it also kills off healthy cells, hence all the side effects.

The treatment being administered to me intravenously (3-4 hour infusions) every two weeks for six months is a combination of four chemo drugs (ABVD) Adriamycin, Bleomycin, Vinblastine, and Dacarbazine. Almost since it was first established in 1975, the ABVD regimen has been considered the 'gold standard' for the treatment of virtually all stages of Hodgkins lymphoma. My prognosis is good and I just have to go through the treatment, side effects and all, like any other medication for any other ailment.

Disturbingly enough, one of the chemo drugs, Bleomycin is on national back-order! But I have such a great doc that he was able to call the director of a pharmacy and have it available to me. Since I brought the medication home, I’ve studied the little clear bottle (pictured below) and its contents--the harmless looking white powder, but revered its power in helping to kill such a powerful and dreadful disease.

I don’t know what the days, weeks and months ahead will bring but I will fight this with every fiber of my being with dignity and grace. What I know is true is that I have an overwhelmingly loving partner, friends (both real and virtual), family and even total strangers on various internet Lymphoma support groups. The support I’ve received has been like nothing I have ever experienced before. It feels good to know I have so many rooting for me and my full recovery. I feel truly blessed.

Tomorrow will be a new day, but I will hold my head up high and look towards the sky and all the beauty that surrounds me. I’ll get through it, and soon enough this will all be in my past but I will be armed with many life lessons given to me along the way as a result of this experience, thereby making me a better and more enlightened human being.

I WILL get to the other side of this dis-ease!

Monday, July 25, 2011

I Am...

I am NOT a victim, nor am I a cancer 'patient'. I'm living my life like it's GOLDEN--because IT IS!

Laugh as much as you breathe and love as long as you live.

Friday, July 22, 2011

Quotes about worrying

Quotes about worrying - to remind me to focus on today:

"Today is the tomorrow we worried about yesterday." ~Author Unknown

"Worry never robs tomorrow of its sorrow, it only saps today of its joy." ~Leo Buscaglia

"Do not anticipate trouble or worry about what may never happen. Keep in the sunlight." ~Benjamin Franklin

My first haircut in 10 years

This evening, I got my first haircut in 10 years. I was determined not to let cancer drugs rob me of my dreds, so with the help of a barber, I shaved my head and shed my locs. Of course the barber hesitated and questioned me about it; “you sure you wanna hair cut?”, “Bald??”, “How many years you’ve been growing them?”, “Why do you want cut your hair?” CHANGE. “It’s all about a major change in my life”, was my response, and so we began cutting.

I walked into the local barber shop with no problem. In fact, I was looking forward to getting my locs cut. I wanted to dive into this process and not think too long about about it. If I did, I think fear would probably have set in and I would’ve changed my mind at the last minute, delaying this process further. Though my chemo treatments don’t start for another week, I was eager to move closer ‘into’ the process and not remain on the periphery. The idea of waking up one day and seeing chunks of my hair on the pillow was not appealing to me. I think that would have sent me into a depression. I just didn’t want to wait, and needed to exercise some care around my emotional health during this process.

I’ve received nice notes and support from friends on Facebook about my cutting my locs. Everything from clips of India Arie’s song “I am not my hair” to words of wisdom like “hair is just an accessory”. All this is rational and true of course, but to a dred wearer of over 10 years, I really have become attached to them and what seems like a simple thing to many was actually a deep, soul-searching process for me. I only quickly arrived at a decision to cut them because again, I didn’t want it to fall out because of chemotherapy, and it ‘s also my way of showing solidarity with all those already stricken with cancer, especially women, who I know what a great challenge it is to lose their hair as a result of this hideous disease.

And so here I am, getting used to my new look. Bald. Last time I was bald was in 1988 when I enlisted in the US Air Force and entered boot camp. I hated it then, but now, I’m learning to like it and this surprises me. What helped of course was when I went to work and all the women nearly fell over themselves talking about how handsome I look, how much younger, and how they see more of my features. Ego boost is good, but I also have the possibility of losing my facial hair; eyebrows, mustache, eyelashes, chest hair, all hair. Wonder how handsome I’ll be then? Just a reality check-- but in the meantime, the compliments made me feel good and I really believe they were all sincere.

I’m still learning to embrace and even see the "new me" and living my new reality more and more everyday. It a process, but I've found an inner strength and peace, and it really helps to have a loving partner and family and so many great friends both real and virtual. I feel loved and I feel the angels around me.

Self-portraits with shaved head.

The New Me. Self-portrait showing my catheter implanted in my chest.

This entire journey thus far has been one of self-determination, resilience and empowerment. Despite all the challenges, I feel free.


OUT of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

~William Ernest Henley. 1849–1903

Tuesday, July 19, 2011

Getting acquainted with C--Bone marrow biopsy tomorrow

I was never one to eat a chicken bone to the marrow. I always got a kick (and still do) of people who eat chicken bones till there is absolutely nothing left.

I thought I'd start with some humor to balance out the anxieties I've been feeling, not so much about the bone marrow biopsy, but of the entire Cancer process as a whole. I've been more emotional these couple of days and I've allowed myself to ride the wave of of emotions through the ocean of uncertainty. I get no warning when a flood of tears of disbelief cloud my eyes and stream down my face. I'm not one who's ashamed of crying or even facing my emotions. Release is the healthy thing to do. In fact, I believe being in touch with my heart has allowed me to love authentically and open myself to love in many forms and serve others in times of need.

Ocean and Sephora, Earthquake Relief, Port-au-Prince, Haiti 2010

But still, I have yet another test tomorrow that brings me one step closer to the new the new reality of my life; the journey towards becoming a cancer SURVIVOR. I'm very familiar with the bone marrow biopsy procedure, and maybe that's the problem--i know too much. A numbing agent will be injected into my hip, and a large needle will go into my bone to pull out a sample of marrow, and blood will also be drawn. This biopsy will yield important results as to the staging of Hodkin's I have and whether or not it has spread to the marrow. I just hope the doc gets what he needs with the first aspiration.

This whole experience seems so surreal. I read back my words and I can't even believe I'm talking about all of this Cancer process in relation to myself. I feel like I'm in an alternate reality, like I've been transplanted in another (hyper) reality.

This afternoon I received a call from the pharmacy, announcing my name, and telling me "your chemo meds are all ready and we'll have them delivered to your doctor's office." I hung the phone up, and took a hard swallow and stared blankly out of my office window, noticing a reflection of myself in the glass. In that instant, i smiled and had a moment of strength. The sun streaming in my window washed my face with hope, strength and even pride for myself. It was an amazing feeling, and even though the feelings have washed through me throughout the day, I am not fearing the bone marrow biopsy. I recognize it as a procedure that brings me one step closer to my beating this! This entire process is difficult, but it's DO-ABLE. I just have to see it in my own reflection.

Monday, July 18, 2011

Become your dream

We never know what messages are created just for us at the time that we need them the most. I had seen Artist De la vega's chalk drawings all over NYC over the years, but this message, today, meant the world to me. I know I was supposed to see this.

One thing I have realized early on is that illness reveals those that matter to/in your life, and those who do not.

Saturday, July 16, 2011

I am not my dis-ease

I am not my dis-ease. I stand before it with fearlessness and remember my powers...I remember my name!...

Friday, July 15, 2011

Support from friends and strangers

Been getting an outpouring of support from friends and complete strangers after posting my Cancer revelation to Facebook. It feels good. There's one piece of advice given to me by a Hodgkin's survivor that I found particularly profound, which has me feeling strangely optimistic:

‎"...buckle up because it might get bumpy...but there is a lot the universe is about to show keep your eyes and your heart open, and it can be an amazing (though difficult) journey."

To be quite honest, despite how difficult this entire treatment experience may or may not be for me, I feel like I will come out a better human being as a result.

Thursday, July 14, 2011

My new reality...cancer

i don't even know where to begin. the "beginning" seems a distant nightmare away that i wonder when i will awake from. in a matter of weeks, i've been put on a speeding train on my way to my new reality; cancer. i received the diagnosis of hodgkin's lymphoma on july 8th after many doctor's visit's, examinations, breathing tests, numerous blood tests, a CAT scan and finally a biopsy of my lymph node in my groin which confirmed the results. my world was turned upside down, and now i have to learn how to live my best life in this new "normality".

every doctor i spoke with (i have access to some of the best), told me that having hodgkin's disease is "good news", because this is one type of cancer that is completely treatable and beatable. ok, so now I know i won't die from this, but i still have some anxieties about the long treatment road ahead. treatment will consist of receiving chemotherapy once every two weeks for six months. the first question i asked the doc is "will i lose my hair?", his reply was "yes, but it will grow back". i quickly was made to realize through the help of a wonderful, loving partner and friends that vanity has no place on the road to healing...there will most certainly be physical changes and i have to deal with them in order to get better, which is the priority.

there was and is so much to process and to prepare for the next six months or so. i had to inform my family, and my job whose full support i have. actually, the support from everyone i've notified thus far has been overwhelming; the outpouring of love, very palpable. i had another surgical procedure only last night to place a port in my chest where the doctor will be administering my chemo in 3-5 hour sessions. post-op pain produced a restless night's sleep, but that is the least of it. next week, i'm scheduled to have a piece of my bone marrow taken from my hip to determine what stage i'm at, and finally, my chemotherapy is scheduled to begin on July 28th.

Self-portrait--Port placed in my chest for chemotherapy administration.

i have so many thoughts, too many crashing together at once. in the meantime, i'm trying to remain and appear "normal", but that effort is becoming futile as i pull all my energies together to prepare for the uphill battle ahead. i'm tired, shocked, and saddened but in the midst of all this i remain encouraged. i've been educating myself about hodkin's, reading other survivor stories and looking into support groups, both on-line and off. my experience in the medical field and working closely with patient's in similar situations, has helped me to get a grip on things to realize that "this too shall pass". Six months later, i'm hoping this will all be over and the nightmare will be behind me.

i will hold on to my creativity as a source of strength to get me through the days ahead. my partner gave me a beautiful leatherbound journal to jot my thoughts, fears and experiences down in. i hope to have it in me to fully document my experiences as a means of healing. i will fight, and i will come out a champion. it's taken me a few days to decide how public to become with this. i'm doing so, because in the same way i've read other stories from survivor's for sources of encouragement and inspiration, i hope to do the same for someone. receiving a cancer diagnosis of any kind is definitely a head trip--the emotional fallout is vast. i also choose to be public about this because hodgkin's disease is nothing to be ashamed of, it is simply living another temporary reality. I also didn't want gossip or speculation to begin about me: (Why is Ocean losing weight? Why is he bald?, why does he look sickly?) People mean well, but I also know some who can't help themselves. i am in the driver's seat with this disease. I will be in control. if i hid and isolated myself, i would only grow depressed, weary and withdrawn, none of which are ingredients for achieving and winning the fight.

i have so much to do, so much to plan, while dealing with all the confusion this recent diagnosis has brought on. I do want to give thanks in advance for all the love and support i've already gotten from family members, friends and even total strangers. humanity has a way of showing the side that resides in the light during the darkest times. I am not a victim and i do believe higher power will favor me throughout this ordeal.

Self-portrait. After my successful treatment, I plan to be CANCER - FREE!