2:30 am. NYC. A soft rain falls outside my windows. I can't sleep because this is on my mind...And I'm "foggy"...:)
I've been blessed to have so many wonderful souls reach out to me to offer prayers, love, support, good energy, spiritual vibes, a beat of a Djembe drum, or a call to the ancestors on my behalf. Whatever your method, style or spiritual belief, I THANK YOU ALL for considering sending me a part of yourselves, even if only through words, and actions from your part of the global consciousness.
I've been struck particularly by the many from around the world (Facebook is an amazing tool in this regard) who find amazement and inspiration through my own journey. What a blessing for us all..
I had been laying in the bed thinking about INSPIRATION and people who SUFFER IN SILENCE. My approach is one of many ways to cope, it's my way, and it's certainly not the right way or the wrong way. There is no script to dealing with adversity. What I do know and have witnessed over the years in my work as a photojournalist and humanitarian, is that many people actually do SUFFER IN SILENCE. This particularly plagues the black community as we are taught to keep "secrets" out of shame, fear, and embarrassment. If cousin Tookie age 13 got pregnant, she was sent away down south to further embrace her shame, until she had the baby or aborted. If Uncle Willie developed AIDS, the pink elephant would be everywhere, crushing people's chest in between helpings of ribs at the summer family reunion. Of course, shame is not a condition solely ascribed to people of color, but I'm just sayin... And if Sister Carlotta from the church had cancer and became symptomatic, she would be prayed for under a watchful eye of concern from the congregation. Stay with me....
Not everyone who develops an ailment has a bright story of championship and LIVING OUT LOUD to share, but still, many do. This is where I think about INSPIRATION. It's humbling to know that many are inspired by my journey, and all the love and support really does help carry me through! "You're an inspiration Ocean." This simple statement brings so much warmth to my heart....
So as I lay in bed between fevers and chills, i ask that anyone reading this REACH out to someone who you know may be SUFFERING IN SILENCE. There are no shortages of ailments going around. We are all afflicted by something; some worse than others. REACHING OUT in the course of my life, LOVING our brothers and sisters, neighbors and even strangers, widens the heart to receive and give and it makes a BIG DIFFERENCE in those people' live's as I can testify to. RIDE THE WAVE OF INSPIRATION to share a kind word, a loving thought, AND YOU RECEIVE IT TEN-FOLD when you need it the most. I can almost guarantee it!
With so much pain and indifference in the world, we ought to nurture that part of us that has the capacity to LOVE in big and small ways, and be TRUE to ourselves and others because WORDS CARRY IMMENSE POWER.
YOU ARE THE PERSON SOMEONE SUFFERING IN SILENCE IS WAITING FOR....
Love, LIGHT AND PEACE to YOU and to EVERYONE!
Ocean
Wednesday, September 21, 2011
Sunday, September 18, 2011
Thoughts about chemo
I HATE chemo!! I can't even believe they call this "medicine", but I refuse to call it "poison", though I understand those (who are going through it) that do. What it does to the body seems like punishment at times. I'm not being negative, and the chemo is expected to rid me of cancer, but I'm just keeping it real and need to get this feeling of anger out of my system. I've been documenting my journey since day one, so I have a duty to include the good, the bad and the ugly. It pains me to even write this. As I read the words, it doesn't even sound like who I am at heart. These words confirm my reality.
This has been a harsh weekend on my system; fatigue, fevers, chills, nausea, a stolen appetite (four slices of raisin bread with peanut butter for protein/energy, a banana and soup), and an overall feeling of malaise. THIS IS NOT ME! If it wasn't for having a great, loving partner and friends who I had an opportunity to spend some time with on Saturday, I'm pretty sure, I would have been in bed the entire weekend. I don't want this reality anymore, I WANT MY DREAMS! My life is slowly having to be reorganized to accommodate chemotherapy effects, and I'm beginning to resent it! Next week, I'm having to take some time off from work to "recover" from side effects. More time to be with my thoughts...
Now, I have not lost sight of my blessings in all this, but I am only human. I understand fully well the horrid side effects that chemo can produce and it really can be A LOT worse. So I do recognize the blessings. But here I am, having completed my fourth chemo session this past Thursday, and can't believe I have at least NINE more to go! No, this is not what I signed up for.
Each day is a new day, and yes, there will be good ones and bad ones. When the good one's come, I will bask in the light, and fully enjoy the good feeling that I've been granted. And even in the face of adversity, I understand that there will be many gifts along the way. I know this, not because anyone told me, but because I believe it!
I just hate chemo and that's my thought of the day!
This has been a harsh weekend on my system; fatigue, fevers, chills, nausea, a stolen appetite (four slices of raisin bread with peanut butter for protein/energy, a banana and soup), and an overall feeling of malaise. THIS IS NOT ME! If it wasn't for having a great, loving partner and friends who I had an opportunity to spend some time with on Saturday, I'm pretty sure, I would have been in bed the entire weekend. I don't want this reality anymore, I WANT MY DREAMS! My life is slowly having to be reorganized to accommodate chemotherapy effects, and I'm beginning to resent it! Next week, I'm having to take some time off from work to "recover" from side effects. More time to be with my thoughts...
Now, I have not lost sight of my blessings in all this, but I am only human. I understand fully well the horrid side effects that chemo can produce and it really can be A LOT worse. So I do recognize the blessings. But here I am, having completed my fourth chemo session this past Thursday, and can't believe I have at least NINE more to go! No, this is not what I signed up for.
Each day is a new day, and yes, there will be good ones and bad ones. When the good one's come, I will bask in the light, and fully enjoy the good feeling that I've been granted. And even in the face of adversity, I understand that there will be many gifts along the way. I know this, not because anyone told me, but because I believe it!
I just hate chemo and that's my thought of the day!
Friday, September 16, 2011
Thursday, September 15, 2011
Round 4 Chemotherapy --The Experience
"nausea, Fatigue, Fevers but here's what else...."
i did everything i could to possibly delay my chemotherapy today: woke up later than usual and let baby sleep in also. I made breakfast, slowly sipped a green tea beverage; played with the dog, and watered the plants. my scheduled time for chemo to start at 11am. Today, I didn't finally get hooked up to my infusion till around 1pm!
yeah, my fault for being nervous about receiving today's chemotherapy. I really don't enjoy it, nor do i enjoy having hodgkin's lymphoma, though i'm embracing my new reality more and more everyday, there is still work involved. One thing I've discovered about about having cancer is that it does make me feel vulnerability in ways I never had to confront. And I'm happy to declare that as a man, and most importantly as a black man. Being authentic even in the face of adversity will bring me more peace and light. Hiding will not, so that's the reason why I'm so public with my own story. I NEED TO HEAL.
Earlier in the week, Welsh Actor Andy Whitfield, best known for his title role on the STARZ television series Spartacus. died. When i read the story online, the news soared though me like a spear from the prop department of Spartacus. I couldn't make any sense of my feelings, nor could I even process them. I found myself in conversation with people throughout the day, while this news was still sitting in the foreground of my mind. For a little while, I felt vulnerable.
Even at chemo today, while I was getting pumped with "poison", as a person with cancer sitting with me across from me said. My mind drifted to Andy Whitfield's death. In the days leading up to chemo, my mind had been playing tricks on me with all kinds of visions that were too abstract to decipher. To the woman who called chemo poision, all I could manage was a polite smile. Everyone going through chemotherapy have the right to call chemo poison. Yes, mind can process this, but I choose to visualize light and love washing through my body which is what made me further consider my feelings around Andy Whitfield's death. I thought about my own mortality and grew angry at Cancer. While I don't have the same kind of cancer that Andy had, to die at 39 years of age, AFTER receiving treatment and AFTER being in remission, seems to be a dirty trick to those in the fight. The notion of putting up a good fight , for so long and be considered a "survivor" only for a short period is one that many people with cancer like myself are confused about.
(receiving chemo through my port)
While bag after bag of IV medication was being administered to me, I was able to "snap" out it, and come back to my own reality, my own journey. My life is not Andy's life, and there are many, many lives to touch while I am on this still here. All this wonderful realization came to me today, as I looked at my dad and my partner's faces. They accompany me to chemo, because they love me and care for my well being. I will spend more time reflecting on my blessings and staying on my divine path.
And if NONE of this makes sense, I blame chemo-brain!!!
Saturday, September 10, 2011
Tuesday, September 06, 2011
An ode to rain
still.
listening to the pitter-patter of the hard raindrops
against the wet glass of the large bay windows.
nuts
fall off the trees
a sure sign that autumn is coming.
where is she?
There.
where she waits for you.
listening to the pitter-patter of the hard raindrops
against the wet glass of the large bay windows.
nuts
fall off the trees
a sure sign that autumn is coming.
where is she?
There.
where she waits for you.
Monday, September 05, 2011
Sunday, September 04, 2011
Invisible Man
And I love light. Perhaps you'll think it strange that an invisible man should need light, desire light, love light. But maybe it is exactly because I am invisible. Light confirms my reality, gives birth to my form. --Ralph Ellison, Invisible Man.
Saturday, September 03, 2011
What is Hodgkin's Lymphoma?
Hodgkin's Lymphoma is a cancer of the lymphatic system, lymphocytes become damaged, they grow & multiply uncontrollably so that the lymph nodes become enlarged, forming painless lumps called tumours. As damaged lymphocytes replace normal ones, the immune system becomes less able to fight infection. It's what I have now, and what i will be rid of as a result of my chemotherapy treatments!
Friday, September 02, 2011
Thursday, September 01, 2011
What NOT to say to a person with cancer...
In the spirit if Lymphoma Awareness month....
What NOT to say to a person with cancer:
1. Never tell a person with cancer about a relative, or loved one who died of cancer.
2. Never offer (alternative) treatment options, when you know I'm already on treatment. It just confuses things, and my mind is already overflowing with managing my new life with C.
3. When you learn I have Hodgkin's, vs. Non-Hodkin's Lymphoma, don't say "oh, you got the 'good' cancer.' Having cancer is never good.
4. Never say "At least they caught it early." Actually, I was MIS-diagnosed over a year ago, when I was having the very symptoms I got diagnosed with. this means cancer has been in my body, a year and a half before i even got the accurate diagnosis.
5. "I know how you feel." No, you don't. Not unless you've had or currently have cancer.
Here's what you CAN say to a person with cancer:
1. Stories of hope. I have no problem hearing about your friends and family who have had lymphoma, beat it, and are doing great now. That’s helpful.
2. Real, honest, specific offers for help.
3. Sympathy, not pity.
4. Encouragement
5. I love you. This can never be said enough. :)
September is Lymphoma Awareness Month
September is Lymphoma awareness month. I never imagined that I would have to necessarily become “aware” of this time of year. Since my diagnosis of Hodgkin’s Lymphoma this past July, I have become aware of many important related events and dates; lymph node biopsy surgery, catheter placement surgery, bone marrow biopsy, chemotherapy appointments, doctor’s follow-up appointments, medication refills, weekly blood-work, etc, etc, etc.
Hodgkin’s Lymphoma is a type of lymphoma, which is a cancer originating from white blood cells called lymphocytes. Each year, there are on average 8,500 new cases of Hodgkin’s Lymphoma in the United States. Prognosis is generally good, with effective treatments like chemotherapy and/or radiation treatments. I have received three chemotherapy treatments so far. I have ten more to receive over the course of six months. While I wish I never cancer, or had to receive chemotherapy, I’m grateful that I have access to the treamtments. I won’t call it “poison” as many do. I realize it’s benefits and adverse effects, but it’s important for me to embrace everything, the good and the bad. As long as chemotherapy rids me of cancer cells, I can deal with the rest.
There are good days and not so good one’s on my journey through C. I find myself slowing down a bit, as fatigue is slowly creeping up as a result of me being anemic, due to Hodgkin’s, and also as an adverse effect of chemotherapy. I’m fortunate however that this, along with occasional nausea are the only side-effects I have to deal with at the moment. My hair has not fallen out yet, but I keep it shaved because I expect it to at any given day. By many accounts, including my doctor's, I am a survivor. Many people who receive chemotherapy, even after the first, experience horrible side-effects almost immediately. As I approach my fourth treatment in a couple of weeks, I am fully aware of my blessings. I only hope I continue on this path of success though chemotherapy and cancer.
Lymphoma awareness month-- hmph. I am hyper aware of my resilient spirit—a gift from God, my inner strength, will to live, my determination to remain creative and not let chemo or cancer rob me of the things I enjoy in life. I am aware of all those who are in pain and suffer with and through cancer. I am also aware of those like myself, who fight the good fight, looking forward to the day when we reach the other side of this disease and can fully claim our victory. Lymphoma awareness month makes me aware of all that I am, and all that I have yet to become. When this is all over, I will be a better human being in more ways than I can know now.
Subscribe to:
Posts (Atom)