I decided to create this blog to share my experiences, thoughts, and lessons through my cancer journey. As I have discovered veganism, good books, and inspiring arts along the way, this is a delicious, thought provoking, and creative healing journey.
Me, doing my famous self-photo in Time Square, New York, NY in 2012
It has been almost two weeks since my last Blog post. Two weeks is a long time... in fact it is the longest period of time I haven't blogged since I started this Blue Butterfly blog. (Bloggity-blog blog blog!) It has been a crazy first month of the year. First my laptop needed a repair and was in the shop for more than two weeks which meant I had to use my fiance's older, slower laptop and the computers at the public library. In addition to my "day job" of teaching, I am working on a few side projects that are quite exciting, inspiring, and challenging like editing my first Thyroid Cancer Canada newsletter (due out in Spring 2012), joining a choir, starting wedding plans, and launching a "side hustle" to earn some extra cash. I have been sick a few times (no doubt) and continue to monitor my health, you know blood tests, doctor visits,... the usual. Although I have been ill, I feel energized by opportunities to share my talents and express my creativity and increase my learning curve. Nevertheless, I tend to have a tendency to overcommit so I always got to be careful.
While, my MAC is in the shop getting something repaired, I have been counting the days until I get it back. (Thank goodness for my extended warranty.) In the meantime, I have been writing here and there on computers at the library and my fiance's "old" clunky laptop. Nothing is like working with my MAC though... sigh!
In the meantime, as Blue Butterfly approaches almost 40, 000 page views, I thought what a good time to let you know what is coming up on this blog:
- More Vex in the City: Vegan Restaurant Reviews!!! 3 of them for Urban Herbivore in Toronto, Blossom in Manhattan, and Strictly Roots in Harlem
- Meaty's latest adventure
- More Funky Sexy Manifestos (my Survivor Resolutions)
- Tabs to find out about a few of my business enterprises
- A tribute to my late Aunt who inspired me with her cancer journey and life
Alright by Jamiroquai (I'm a big Jamiroquai fan!!!)
As a follow-up to my last post Things Fall Apart, I got a phone call from the "vigilant" doctor at the walk-in clinic to tell me that my white blood cell and calcium levels returned to normal.
Phew! What an experience! I will continue to follow through with medical tests and follow-up but the critical part is over and now I feel relief. I think the worst thing about it was how quickly I went into panic mode once I saw the doctor. I did not anticipate that. The panic and fear felt debilitating and it hindered me from moving forward. Between my prayers, I found myself thinking about "worst case scenarios". I am glad that is over.
In response to that post, I had a few helpful comments through my facebook friends. My cousin wrote:
u do what u have to do to keep healthy Blue Butterfly. one day my english teacher did an experiment. he asked each person in my class whats their health issue. at first people were like saying benign things like headache or knee pain but aftee a few answers like this people started being real. all of a sudden people were reeling off the various health conditions they suffer from. many were quite serious. what did this tell us? when u think that u r the only one who is seeing doctors and getting tests...u r not. i found it enlightening to remember we all have issues and that its important to remember that those issues do not define us. u r Blue Butterfly and this is just one of the many things that tell the story of ur life.
I thanked her for this comment as it reminded me to put all of this including my cancer experience into perspective. I can and will move beyond this and other experiences. I am not only a "cancer survivor" or a person who gets sick every once in a while, I am a person, wholly human, and like all people, I have issues. I do no need to let "those issues" define me. Thank you Marsha for your words.
Another response came from a fellow cancer survivor Jen:
This sounds very much like post traumatic stress....I have a history of it and was reading up on it a bit more today, trying to familiarize myself with the irritability and my reactions to things - hypersensitivity. Having been through a life threatening illness, it's generally quite a usual reaction to anything that could possibly be. Even five years out now, I'm still paranoid and do my best to write about it, talk about it and am going to book an appointment for professional advice on how to move forward. I hope all goes well with you Nadia. This sounds so much like my search for the "hidden illness" for the first three years post-treatment. Once I came to the acceptance that this was just going to be life and that I needn't frighten myself so much about the little stuff, I found a lot of it went away, or I just didn't notice it as much.
Given my background(I completed my undergraduate degree in Honour's psychology), I was familiar with post-traumatic stress disorder (PTSD). I studied it and knew that it can often affect victims of war, veterans and retired soldiers, rape victims, or anyone who has experienced a traumatic event. Wikipedia defines post-traumatic stress disorder as:
a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma.[1][2][3] This event may involve the threat of death to oneself or to someone else, or to one's own or someone else's physical, sexual, or psychological integrity,[1] overwhelming the individual's ability to cope. As an effect of psychological trauma, PTSD is less frequent and more enduring than the more commonly seen acute stress response. Diagnostic symptoms for PTSD include re-experiencing the original trauma(s) through flashbacks or nightmares, avoidance of stimuli associated with the trauma, and increased arousal—such as difficulty falling or staying asleep, anger, and hypervigilance. Formal diagnostic criteria (both DSM-IV-TR and ICD-10) require that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning.[1]
I have learned recently from my readings that PTSD also affects cancer survivors. When I had this health scare, I found myself saying, "Not again." I also relived those weeks and months of not knowing and feeling anxious as tests were administered. Knowing about PTSD did not prevent me from feeling so anxious or my fears from seeming so real.
How did I cope with this situation?
Prayer, meditation, conversations with friends and family, sleeping, and writing. I tried my best to do other things like reading, cooking, and yoga which are all activities I found to be therapeutic. I also spent time with my fiance. By following the doctor's instructions and taking proactive steps to heal myself (eating more vegetables and fruits, napping, vitamins), I think this helped me to "hold it together". I will be alright.
I was asked recently through a family member why am I putting all my business on the internet?
That is an excellent question. After the Things Fall Apart post, I thought about taking it down since it was so personal. However I do feel that it is part of my healing journey and if there is anything that come of it to help another person out, then it is worth it. Plus, I am still grappling with the psychological impact of having had cancer. There is not a lot of information about survivorship especially after thyroid cancer. I hope to expand this body of knowledge.
"You Got Me" by the Roots featuring Erykah Badu and Eve from the Things Fall Apart album
I titled this post Things Fall Apart which is also the name of the Roots' 1999 album and a 1958 English language novel by Nigerian writer Chinhua Achebe. I listened to the album during my recent trip and I read the book years ago. Maybe the title is a little melodramatic for this post but it aptly describes how I felt this week. Feeling sick really affects me in far reaching ways.
This will probably be one of the hardest blog posts to write perhaps since I feel in a bit of a raw, negative space. One of the things that I find hardest about life post-cancer, AD (after diagnosis) is just living and not being alarmed any time you get sick. For example, when is a cold, just a cold? When is a stomach ache, just a stomach ache? Will anything ever feel normal or will I always need to be hyper-vigilant about ailment or sniffle? Do I need to "bubble wrap" my life and avoid every potential contaminant like the plague? When healthy proactive vigilance cross over into fearful paranoia?
Recently, I returned home from a brief, cheap star-studded action-packed trip to the Big Apple and Boston. This had been a trip that I planned for a while and I was a little nervous that it wouldn't happen especially considering my recent financial woes but journey I did. I got cheap tickets ($40 to NYC, $18 to Boston) for travel on Greyhound chartered services and some generous family members. I got to visit vegan restaurants, spend time with my "terrible two" one-year old nephew, see a star-studded version of Porgy and Bess on Broadway, and see one of my prospective MFA in Creative Writing programs. It was a busy, eventful few days with lots of time writing, editing, listening to music (the Roots, Erykah Badu), chatting with strangers, and sleeping while logging hundreds of miles in a few days.
Near the end of my trip, I had a very uncomfortable feeling in my stomach which resulted in a total loss of appetite followed by stomach pains. I didn't feel like eating anything and when I tried, I felt full right away and had this dull pain. I arrived home in Canada, having eaten very little but tried to eat some left over rice and peas, plantains, and steamed cabbage from a Jamaican restaurant in Boston. Still pain. Feeling a bit tired and frazzled, I went to work the next day, attributing how I was feeling to traveling for 18 hours on a bus within a 30 hour period.
As the days progressed, I continued to feel the lack of appetite and pain that accompanied eating anything including a smoothie, a slice of pizza, and so I stuck to soups and salads. I also continued to feel fatigue and continued to think it was from returning from my trip. Along with these symptoms, I had begun feeling tingling in my hands and feet.
When a colleague told me about how Telehealth (an information line in Ontario staffed around the clock by registered nurses who could provide medical advice), informed her to take a cousin to the hospital for gall bladder issues, I decided that I needed to give it a try. At 10:30pm, I spoke with a nurse who assessed my situation and told me to see my doctor within 24 hours and if I could not get an appointment, go to a walk-in clinic.
I went to the clinic. I was hoping that the doctor might say I caught a virus or had food poisoning or "it will pass", nothing that a little Pepto or Alka Seltzer can't fix. You know, the slightly apathetic, jaded doc who has "seen it all". Instead, I got a "fresh out of med school", pretty blonde physician who asked me several questions. She ordered a whole slew of tests. I walked out of the office a bit nervous, a bit depressed... among the questions she asked me about a family history of stomach or colon cancer. I know, I know... she needs to ask these kinds of questions. It's part of the protocol but I was terrified, for the first time. A feeling of gloom overtook me and I felt defeated. I have so many goals for this year laid out and I even made good headway on my 90-day goals. I am a woman with a plan. "I don't need this right now."
So, I did the blood test, booked the other appointments, began at-home sample taking,... everything to get to the bottom of this mystery illness. I forgot to mention that I had similar stomach pains a few weeks ago in December as well. I am to stay away from spicy food, caffeine, and increase my B12 since the tingling was probably attributed to it.
I tend to be a bit of a worry wort. I went from Dr. Google to Dr. Jesus, education and prayer. I searched all kinds of possibilities. I called my fiance and told him what happened. I had trouble sleeping.
So then the next day, the very next day, I get a call from the doctor which is lightning speed when you consider the slow pace of the Canadian healthcare system. This phone call can also mean something is wrong. I tried to relax although my fellow cancer buddies shared many a story of getting the call. I'm sure folks with other conditions can relate.
Oh, my B12. I knew it. I forgot to replace that finished bottle. D'uh! Every good vegan knows how essential is B12.
Not my B12? My B12 is actually normal?
Something else is off.
My calcium level dropped. This is strange to me since I have the "little parathyroid that could". After my three parathyroid glands were removed during my total thyroidectomy last year, my one remaining parathyroid was reimplanted causing it to be "stunned" resulting in extremely low levels of calcium in my blood. As a result, I had a longer hospital stay, had to take calcium intravenously, and was monitored with frequent blood tests. After four days, my calcium levels artificially got to a level that was normal enough for me to return home with a ton of calcium supplements and Rocaltrol. After taking these high regimented doses for two months, my little parathyroid began to work and regulate the calcium levels on its own.
However, on the phone, the doctor said the hand tingling I had been experiencing was caused by the low calcium level. She said I would now need to take a high dose of calcium once again.
There was another problem. My neutrophils are low. In fact, since last year they have been a little on the low side but have gradually dropped since then. Low neutrophils are not unusual in Black women. It's called African Neutropenia (sounds kind of exotic). Also, a drop in neutrophils can be attributed to chemotherapy and/or fighting off a virus. Although, I woke up with the sniffles and a slight sore throat, the doctor said that I needed to watch every symptom carefully. Almost anxiously, she said if certain things happen, I should go to emergency. In addition, I have to do a bunch more blood work and other tests to find out the reasons behind this mysterious condition.
No doubt, I am nervous that once again, I am going through tests, being poked and prodded, and shuttled from one doctor to the next. Perhaps naively, I thought that chapter of blood tests and prognoses was behind me, in my past. However on the other hand, I am relieved that I found such a knowledgeable and resourceful doc at a walk-in clinic who took my concerns seriously and did not just write them off as I have experienced with Endo #4. (By the way, I am leaving Endo #4 and will start seeing Endo #5 who was recommended to me by another Thy'Ca survivor. I have also met Endo #5 who is very informed. Can't wait!)
I guess my laptop was having sympathetic pains too since it has for the first time needed repairs and is in the shop for up to three weeks. It will need some parts replaced and with it gone, I feel like a piece of me was taken away. I never realized how much my laptop meant to me and how much I relied on it to connect with the outside world, express myself, and be entertained. In the meantime, I am relying on my fiance's older, clunkier, slower old-school laptop and old-fashioned pen and paper to record my thoughts. I have also been reading a lot of interesting stuff.
I feel a bit like the wind has been taken out of my sails. I looked forward to taking 2012 by storm. The new year shined brightly with the hopes of a fresh start and renewal but I've just hit a "snag", a big one. I did not expect my first few weeks of the new year to be shadowed with sickness, doctor visits, and lab tests. I really don't need to be sick right now. But, who does?
It is still a shock for me to know that thyroid cancer is still a rare cancer. This is particularly odd since I know of at least 5 people, not in any of my cancer support or resource organizations, who have had thyroid cancer. On the Global TV site, they indicate that while most cancer rates have decreased, thyroid cancer is rising at a rate of more than 10%.
I have attached the Global TV clip featuring Lindsay, one of the survivors I have met who shares my journey. Coincidentally, Lindsay worked with a friend of mine and her sister years ago. (I did not discover this until months after meeting Lindsay.) She is quite a resourceful and informed "exceptional patient" (a la Love, Medicine, and Miracles by Bernie Siegel) featured in my post, Wellspring Thyroid Patients' Forum June 14.
British-born of Jamaican parents, Macka B is a reggae artist, performer, activist, and fellow vegan. More specifically, he follows a strict Rastafarian Ital deit. I love his fun roots reggae tunes especially this one, Wha Me Eat. I think should be my new anthem.
I love new beginnings and I am excited by the start of another year. 2012 represents a fresh start. Although there were definitely many challenges in 2011, I am looking forward to moving beyond these into the new year.
Yesterday, on December 31st, I attended the funeral of a man who died from cancer. After four years of fighting metastatic colon cancer, he died early Christmas morning. He was the father of my sister's childhood best friend. As an adult, I reconnected with the family to some extent. I attended her wedding and she attended my sister's wedding. The younger sister of my sister's friend was the pianist at a church I was visiting for a few months. From what I know, he maintained good spirits throughout his illness. He also raised three successful women-- a doctor, a concert pianist, and an international development worker. I was immediately affected by the news of his death. Cancer has claimed the life of yet another person and it has impacted the life of so many others. My thoughts and prayers are with this family.
Cancer survivors are everywhere. I recognized a minister at the funeral and he introduced me to his wife. I had said, "Cancer is a beast. I was diagnosed last year."
"I'm a survivor too," she replied.
"We're everywhere," I agreed. We are even at this funeral.
"What kind? If you don't mind me asking..." she replied.
"Thyroid," I replied showing Meaty. For some reason, I have gotten into the habit of pointing to or revealing my scar when I talk about my diagnosis to someone new. It's never planned though and it's as if I was saying, 'I had cancer. Look! I have proof' or 'This is where the thyroid comes from.'
"Me too," she said. "You did the radiation and the isolation and...?"
"Yup," I said.
"How many years along are you?"
"It just happened this past year." She and a friend respond with gasped with expressions of sympathy.
She proceeded to tell me that it took her five years to recover from her thyroid cancer. "It affects you emotionally, spiritually, mentally, and physically." I totally understood what she meant. The thyroid is a tiny organ but it packs one hell of a punch. It is tied to so many functions that affect your well-being. Then she proceeded to tell me how she lost the fifty pounds she gained as a side effect of thyroid cancer.
This is her story and she felt compelled to share it with me in great detail. She finished by saying, "If you have any questions or need to talk, please call me." Her thyroid cancer journey was shaped by this experience. Unlike many thyroid cancer survivors, my weight gain has been minimal. Despite the fact that I have re-introduced exercise to my routine six months ago, my weight has not budged at all which is happens to many thy'ca survivors as well. But weight fluctuations or rigidity is only part of the cancer journey story.
The reality of the cancer journey is so multi-faceted. Cancer forces a person to face his or her own mortality as symbolized by the funeral, a physical transformation as in the thy'ca survivor's weight gain, and other challenges. Each person's cancer story is so individualized.
Stories are at the centre of our human existence. They are the reason why television shows and movies are so popular, books become bestsellers, ancient texts are so sacred, and our ancestors gathered in circles around a fire. In 2011, I have been so blessed to share my story to so many people. I have also heard many stories and I look forward to 2012, a year in which I hope to share even more stories through this blog, the Thyroid Cancer Canada quarterly newsletter as a new editor, articles, journal writing, and hopefully a book.
Kris Carr is someone I hope to interview for this blog. I feel that we are kindred spirits for a few reasons. After I started this blog in April, I was amazed to learn about her and see how much her cancer journey reminded me of my own. Second, she is also a Virgo, our birthdays are one week apart. Third, she wrote something that resonated with me in her most recent blog post :
I’m an artist at my core. I struggle, snuggle, protest, pound fists, open arms, break, yell, hide and fly. That’s how I expand. How do you wrangle that!? You don’t.
As I vowed this year not to create any New Year's resolutions (I am resolution-ed out, I already have my 100 Funky Sexy Manifesto Survivor Resolutions also known as FSM, for short), I have instead made a list of things I look forward to in 2012. Kris Carr says that a very "Virgo-esque" thing to do is to assign a resolution for each month. (Do my 10 goals in 90 days count?) This is the closest I come to New Year's resolutions. Here is to sharing them with you my readers.
2012 (Looking forward to it)
- Continue self-care as a top priority (sleep, exercise, eating well, meditation, yoga) (FSM)
- Write, write, write
- Visit prospective Master of Fine Arts (MFA) programs in Creative Writing and apply to the ones I like (FSM)
- Sell my car
- Embrace my new volunteer position as News Editor and Newsletter Committee Chair for Thyroid Cancer Canada (TCC)
- Sing in a Caribbean folk choir
- Spend more time with family
- Learn how to post videos and some podcasts on this blog
- Connect with more writers and opportunities to develop my writing (workshops, classes, retreats)
- Plan my wedding (FSM)
- Run in an event
- Do the Crazy Sexy 21-Day Cleanse (FSM)
- Complete one of my book ideas and send out queries to potential publishers (FSM)
- Be a better kindergarten teacher, writer, partner, sister, family member, and friend
- Move to a nicer, cheaper apartment (FSM)
- Worry less
- Introduce more raw foods on my vegan plate
- Run in an event (FSM)
- Forgive more (FSM)
- Do more speaking engagements (FSM)
- Be more assertive (FSM)
- Spend more time with nature
- Clean house (FSM)
- Budget better
- Read more books and see more movies (FSM)
- Incorporate the 7 principles of Kwanzaa (Nguzo Saba) into my everyday
I realize that putting all this out there, I am taking a bit of a risk. By sharing my vision with y'all, I am feeling a level of accountability for following through... although I must confess that I do have a tendency to overcommit. (I hope I didn't this time.) Also, some of the items on this list sound suspiciously like resolutions. Oh, what the heck? So what if there are some resolutions stuck in there. I have a great feeling about this year.
I wish you and your family a very happy, healthy, and blessed 2012. Happy New Year!!!
