Girl gets cancer. Girl is dissatisfied with diagnosis and the fact there is no known cause to cancer. Girl seeks answers. Girl reads books. Girl has awakening. Girl changes diet (becomes vegan). Girl focuses on healing journey. Girl does more yoga, meditates more, and looks to food as medecine. Girl reaches out and meets other cancer warriors. Girl turns to alternative medicine treatments. This is my story.
But then I was surfing the net and learned about Crazy Sexy Diet. I go to visit a website called Crazy, Sexy, Cancer and I learn about Kris Carr. Her journey sounds a lot like my journey. ALOT like my journey.
I stop feeling quite so original.
On the LID Tip
This is my fifth day on the Low Iodine Diet. And my second blog with a TLC reference. (T-Boz Left-Eye and Chili.) I'm sleepy and tired and became a vegan for Lent before doing my Low Iodine Diet. So technically, I'm low iodine vegan diet. I thought my selections would be quite limited but I'm surviving and feeling quite full. I've been juicing like crazy. Smoothies each morning. Homemade bread and stew. Today I made a lovely multi-lentil dhal with quinoa. (Quinoa is both a carb and a protein. This is key since I can't eat tofu or soy anything, both sources of protein and calcium.) I feel okay but mostly tired all the time. I tried to nap earlier but couldn't. So I tried to read first which usually puts me to sleep, except I was reading "Fast Food Nation: The Dark Side of the All-American Meal" by Eric Schlosser so of course I could not sleep. I read through the chapters on why the fries taste so good, slaughterhouses, cheap and illegal immigrant labour, severe workplace injuries and deaths, poor working conditions, and began to read about pathogens in the meat. Enough to make me say Grrrrrr. And I guess enough to keep me awake and not napping.
I think that this cancer experience is changing me. Today and yesterday I became more mindful, thinking about the here and now. Something I don't typically do. Usually I'm lamenting the past or obsessing over and planning the future. In fact, I had to delete my first blog entry which I wrote in 2008. It was so personal and painful to read. I was really stressing out about multiple issues and it seemed so raw, so angst-ridden.
So I think my first lesson, my most important one is to take things slowly and one at a time (both new concepts to me.) Slow and one step at a time. Meditation helps me to breathe and to focus and to take things one... breath... at... a... time.
But then I remember TLC's album "Crazy, Sexy, Cool" released in 1994. And I realize that Kris Carr is not quite so original after all.
His Name is Meaty
It was my third day in the hospital and my fiance came to visit. Except it was not only me he came to visit.
"I wanted to introduce you to someone," I said. I was standing with my IV in my left hand as to solution bags dripped through long tubes. I wore powder fleece blue pyjamas with snowmen all over them and purple slippers. My dredlocks were in short plaits a la Celie from the Color Purple. I stood with my neck slightly extended in front of me and a little hunched. I shuffled my feet from side to side in a sort of penguin walk. "His name is Meaty."
My fiance probably thought I flew over the cuckoo's nest. Going delusional. Too many painkillers? Sorry. I didn't use any painkillers after surgery. Maybe it was the cabin fever but I decided to name my surgical incision. Meaty. Why? Well, that's self-explanatory.
During my healing, Meaty has been going through his own transition.
From this
To this
To this
And now this
Thank God for Vitamin E and Scar Gel (and naturopathic creams like Calendula) and most importantly time.
"Why do you take pictures of your neck?" asked Camille, my friend Amy's five-year old daughter.
"Because I like to," I told her. That was part of the reason.
I like to measure and observe the transition my body is going through. By photographing Meaty's healing, I am reminded of the healing taking place inside. Meaty will take a full two years to heal. During this time, a lot of changes will take place both inside and out.
Hibernation
Today has been mostly a hibernation day. I woke up early, early to get to the hospital lab to do what seems like my fiftieth blood test. I'm quite a blood test pro these days. I know my right arm is the best arm and I know not to look (occasionally I'll look if there is no pain.) When I was in the hospital, I was having like four blood tests a day. I would wonder how much blood loss was permitted in a 24-hour-period and how long it might take my borderline anemic body to recover.
Anyway, today for some particular reason, the blood test was painful. My arm burned and I did not know why. It stung when the needle went in and when it came out. Maybe the lack of thyroid hormone causes burning sensations too. Well, there goes another five vials of blood.
When I came home, I went straight to bed and slept another four hours or so.
I found myself feeling tired and sluggish all day, except when I am writing. I find writing this blog to be very energizing. As soon as I stop, I want to go back to sleep.
Hibernation.
I'm in touch with my own inner baby bear.
So when I woke up this last time, I ate. I don't feel exactly hungry but I am making myself eat which is good.
I also walked over to the Anne Johnson Station which is the highlight of every Friday for me. This when I get my GOOD FOOD BOX. A box full of organic fruits and veggies from both local farms when possible and some from abroad for only $ 24.
The lady who runs my GOOD FOOD stop is Geraldine, a bright and cheery older nurse who is always so excited to tell me about the contents of the box and the featured vegetable of the week. This week's vegetable is celery. (YICK!) I do not like celery unless it is blended into a juice or cooked into a soup. (It's very good for you though.) I have some celery left over from last time and now I have a new bag. I wonder what I will do cook it this time?
The GOOD FOOD BOX presented by FOODSHARE
All my very own (well I don't get to keep the box)
Wonder what I'll get this time?
All this fresh organic produce for $ 24, baby!!!
Art Therapy
During my recovery and treatment during this illness, I have been getting some artistic inspiration. Although I have always had a talent for drawing, I don't always feel motivated to do so. However, whenever the artistic inspiration comes, I must leap on it and grab it like a bucking bronco. Here are some pieces that I have been inspired to create.
My Healing Vision Board
Inspiration
Embracing my Inner Rosie Rivoter
Let's Go Hypo
Polkaroo (if you grew up on Canadian television in the late 1970s and 1980s, you'll understand)
Thyrogen,
Thyrogen,
Where for art, thou Thyrogen?
It's hard to not wish I had Thyrogen on a day like today. I slept eleven hours and according to my fiance, I look like I could sleep some more. What is Thyrogen you may ask? Well c'mon. It's only the most coveted over-priced rare med on the market right now. Coveted by thyroid cancer patients worldwide. Over-priced. For a cool $ 1600-2000. And rare. One manufacturer, Genzyme, makes it. No generics, people. And guess what folks? It is fresh out of stock! So far all of you who need to do your Radiation in the American Thyroid Association (ATA) recommended 1-3 months after surgery (like me, I'm at the end of month 3), you'll have to do without. So suffer!!!!!
All drama aside. The Thyrogen ordeal is thankfully over for me. And today, I realized that I have only four more days of "going hypo" before doing the Radiation and then I go into isolation for a while.
Do I sound like a drug fiend, yet? Well, no I'm not. I totally believe in natural healing methods and I am taking my naturopathic prescriptions carefully and consistently. However, nothing can replace the hormones that your body naturally produces. And when you got no thyroid, you got no T3 or T4.
When did my Thyrogen ordeal begin? Well, it all started in February when I was told that because my cancer had spread to 1/3 of my extracted lymph nodes, it was highly recommended that I do the Radiatioactive Iodine ablation or RAI. Also called I-131.
Not I-Threes.
The I-Threes (Bob Marley and the Wailers' back-up vocalists)
Back in November 2010 when I was originally diagnosed, I thought I would only be dealing with surgery. I focused on the surgery. Feared the surgery. Researched the surgery. And kept quiet since I told very, very few people about it. (And look at me now. Me have me own blog.)
So in February, after my surgery, I started to get this feeling. Intuition. Vibes, if you will that yes I would need RAI. So I immediately called my health insurance company to find out if they would cover the cost of Thyrogen. Thyrogen, the miracle drug, would allow me to do the Radiation treatment without "going hypo", that is, not have to go off my thyroid hormone (Cytomel, T3). Why would I want to NOT go hypo? Well, read the symptoms of hypothyroidism (which is when your body does not produce enough thyroid hormone or in my case, NO THYROID HORMONE):
Early
Poor muscle tone (muscle hypotonia)
Fatigue
Any form of menstrual irregularity and fertility problems
Hyperprolactinemia and galactorrhea
Elevated serum cholesterol
Cold intolerance, increased sensitivity to cold
Constipation
Rapid thoughts
Color sensitivity
Depression
Muscle cramps and joint pain
Thin, brittle fingernails
Coarse hair
Paleness
Decreased sweating
Dry, itchy skin
Weight gain and water retention
Bradycardia (low heart rate – fewer than sixty beats per minute)
Late
Goiter
Slow speech and a hoarse, breaking voice – deepening of the voice can also be noticed, caused by Reinke's Edema.
Dry puffy skin, especially on the face
Thinning of the outer third of the eyebrows (sign of Hertoghe)
Abnormal menstrual cycles
Low basal body temperature
Thyroid-Related Depression
Uncommon
Impaired memory
Impaired cognitive function (brain fog) and inattentiveness
A slow heart rate with ECG changes including low voltage signals. Diminished cardiac output and decreased contractility
Reactive (or post-prandial) hypoglycemia
Sluggish reflexes
Hair loss
Anemia caused by impaired haemoglobin synthesis (decreased EPO levels), impaired intestinal iron and folate absorption or B12 deficiency from pernicious anemia
Difficulty swallowing
Shortness of breath with a shallow and slow respiratory pattern
Increased need for sleep
Irritability and mood instability
Yellowing of the skin due to impaired conversion of beta-carotene to vitamin A (carotoderma)
Impaired renal function with decreased glomerular filtration rate
Acute psychosis (myxedema madness) (a rare presentation of hypothyroidism)
Decreased libido in men due to impairment of testicular testosterone synthesis
Decreased sense of taste and smell (anosmia)
Puffy face, hands and feet (late, less common symptoms)
Gynecomastia
Deafness
Can you guess why I didn't want to go hypo? Yeah. I'll pass. And for someone like me, who has no thyroid whatsoever, some of these symptoms could be even more intense. Especially if you have a history of depression... blue butterfly, anyone? (But my parents didn't name me Nadia (which means HOPE) for nothing.)
Anyway, the woman at the insurance company was like, "That drug is expensive."
"You can't tell me over the phone if it is covered?"
"No, you'll have to do a pre-authorization." So I had to submit my original prescription for Thyrogen to the insurance company and wait 3 weeks for an answer. 3 weeks! Then I called them every few days to only find out from person, yes, I could have done this over the phone but it was too late since I sent in the paperwork and they probably begun the processing.
Prior to this, Thyrogen had issued a notice that said the supply was short but should be resolved in May 2011. Although I read this letter, through the posts on the Thyroid Cancer Canada (TCC), patients were still able to fill the prescription in Canada especially in large cities like Toronto. In fact, I went to Shopper's Drug Mart and the pharmacist there said that he would order it for me. It would take a week. But since I didn't have the original prescription and I thought I had time and it was no way to throw $ 1, 600 into paying it upfront without being certain I would get coverage, I decided to wait for my insurance company to get back to me. After all, May was not too far away.
Then, I finally received the reply in the mail (and after many calls to the insurance company and one in which I just about lost it), they would not cover the $ 1600 medication. They said I did not meet the criteria but they didn't tell me what the criteria was (still to this day even after I wrote back a letter to appeal the decision. Plus I had already sent all of the information they requested with my pre-authorization form.) This was extremely disappointing and upsetting. In the meantime, I had applied to the Trillium/Ontario Drug Benefit which covers medications that are not typically covered my health insurance. Thyrogen qualified and hence I might qualify. (Last week, I received a letter to say that I do qualify for up to $ 1100).
But then on the TCC website, they posted a new letter from Genzyme saying that Thyrogen would not be able until June. Then July. I freaked out. I couldn't wait since I needed to get it by late April the latest. I was so upset and had a tearful conversation with my mother-in-law-to-be. All the posts from other Canadian patients in my online group indicated they had no luck either. She suggested going in person to different pharmacies to see for myself. I went to Shoppers Drug Mart and PharmaPlus and called the pharmacies at my hospital as well as Sunnybrook and Princess Margaret (our city's cancer hospital). No luck. Then I called a pharmacy at a cancer centre in Buffalo, NY. They sent me to call another pharmacy. I spoke with a woman there and she said they were out. Try the end of April. So I called my uncle who is a pharmacist in the Bronx. (I heard that a patient might be able to get Thyrogen in Florida.) No luck. He said he called over the city to different pharmacies/warehouses and they either did not have it or did not hear of it. I called Genzyme USA and they said they were fresh out.
I was tired out and extremely frustrated. My anxiety-level from waiting at home for answers which took weeks to come was at an all-time high and I did not feel that there was nothing else I could do. Besides, I was also fighting two other battles: Getting a second opinion for my radiation dosage from another specialist (what an ordeal!) and appealing to get sick benefits. (I will talk about those some other time.)
I felt alone. And this is one of the reasons I began to go to Wellspring (a cancer support centre) in March. I could find people who were going through what I was.
So I did my cancer lesson #3: Let Go (and Let God). As a result, I feel more at peace with the situation especially since I did not have to fight anymore. I could save that fighting spirit for the cancer cells within!
As for going hypo, it too will come to an end.
MGMT - Electric Feel
I woke up this morning and went to the bathroom. Started feeling this vibration through my legs like waves radiating from the ground up in stripes. I thought is the ground trembling from deep below? Am I feeling the vibrations of the furnace boiler or the pipes underground through my legs? It was the strangest thing, I never felt before. Then I stood up and the electric feel stopped.
Bills, Bills, Bills
Bills, Bills, Bills by Destiny's Child
During my meditation today (I was doing a Body Scan with my Jon Kabat-Zinn CD), I had a realization. When I was trying to focus on breathing into my left toe, a thought recurred. (This is not what one wants to think about during meditation but meditation is a practice and I'm practicing mindfulness.) As I breathed into my left toe, then my left foot,... I realized that CANCER IS EXPENSIVE. (In a meditation, one is encouraged to "park" your thoughts or watch them "drift" by but for some reason I had a hard time shaking this one.)
When I checked my mail today, I received a letter to extend my Long-Term Disability benefit for $ 410. I did not even know how long I will be away from work yet but I was being asked to pay this sum all up front with a deadline in May. Last week, I received a phone bill of $ 500. (I had not paid the last phone bill and with all of the day time calls, wait times, long distance, etc., my phone bills are high.) Then there is the extension of my dental and health benefits with a monthly charge of about $250. My naturopathic treatments, although cheaper since I go to the Naturopathic college, are not covered by private or provincial drug insurance. Then there are miscellaneous items that I need to purchase like my MedicAlert bracelet ($120), SeaBands ($ 22), and Gravol ($12), it all adds up. The government sick benefits I receive represent 40% of my income (until a certain time). And it's taxed!!! Plus, I received two parking tickets last week while attending medical appointments (my time ran out). This is all on top of my other expenses (household, credit card debts, student loans, etc.)
If the Thyrogen was available (see post "Thyrogen? Was Here? And I Missed Him Again"), I would have had to pay $ 1600 ($2000 if purchased in the US without provincial or insurance coverage) to cover it without all the uncertainty I was going through.
Cancer is PRICEY. I don't think about this fact all the time (but apparently do when I meditate). Maybe it's my faith that God has it all in control OR maybe it's denial (what problem?). Or perhaps, it's a bit of both. But cancer can be a huge financial burden. (So much so that some people try to profit from it without even being sick. There are loads of stories like these all over the internet. Check this out: http://www.cbc.ca/news/canada/toronto/story/2010/11/06/cancer-scam-116.html)
I also know that some people are in worse situations than myself. If I had children or a spouse who was unemployed or if I was working on a contract without any benefits or laid off, who knows where I'd be or what uncertainties I would be dealing with on top of the illness and recovery.
My cancer lesson that I got this morning (#10) is to express my feelings and express gratitude. I must admit that I am thankful and I feel blessed. Despite the difficulties, I have faith things will work out although this can be hard and I do have a good cry every now and then (like today). These financial costs are huge especially when considering that I have a wedding coming up. And I'm not sure what I'll earn in July and August (since I'm off from work right now, my summer pay is screwed up and reduced to Lord knows what yet.)
Love, Medicine, and Miracles
I named this post after the title of a book by Dr. Bernie Siegel because I feel that throughout my illness and recovery, I have seen evidence of these. Siegel feels that these are all necessary to recover from cancer. I have seen this manifest in different ways. I am amazed that I have even witnessed a miracle. It is easy to forget that miracles can take place in this modern age and time, my friend Nadine reminded me weeks ago. Well, it's true.
Love
Love for me can take many forms. In this context, I have seen it in three ways. First, I have seen it in the prayers of those around me. Prayers from my family, friends, and church community as well as prayers from co-workers and even strangers. When someone prays for you, it's like they are saying I care about you enough to take a moment to think about you and ask God to have favour on your circumstance. It says, I love you. That's huge! I appreciate every prayer that has been said. I draw strength from these as well as from my own prayers. Next there is demonstrative love. I have seen generosity in a number of ways. I was so touched when my sister with her young family (husband and baby in tow) flew to Toronto to be with me for moral support. When she told me she would come, I told her that it wasn't necessary. (Too much to ask, I thought.) But this visit meant a lot to me and took the form of daily visits. Although, I just had surgery and had a longer than expected hospital stay, I got to hold and cherish my nephew and in those moments I did not remember that I had a stiff neck or dizziness or fatigue. My phone was ringing a lot in the weeks to follow as I heard from cousins, friends, relatives, coworkers, and my mother (twice and sometimes three times daily). My mother-in-law to be is also dealing with illness so we were able to call each other during the day to provide mutual support. Each week I had a few visits from friends which lifted my spirits with our jokes and laughter. Then there is my fiance who saw me daily and although I had bloody scar and surgical tape on my neck and dry, pale skin, said I looked so cute in my blue pyjamas. He put up with my mood swings from exhausted and dizzy to hyperthyroid to "hypo hell". My mother who came over two times (not the end I am sure) to clean our apartment with her efficiency, zeal, and ferosity. My dad who fixed things and drove me to some of my appointments. My older brother who listened and provided a shoulder to cry on two days before my surgery when I was so afraid. And my baby sister who helped me to celebrate Valentine's day with chocolates and novelty gifts. Flowers, cards, and stuffed toys. Njeri with her phone calls and a gift of a juicer. Encouraging e-mails. A phone call in with my kindergarten students filled with "I love you" and "When are you coming back?" In these and so many ways, I have seen love demonstrated. Then there is the community. Church people who I did not know well but offered to help. One offered a therapeutic touch session. Another provided conversation and an ear to hear the ups and downs of my illness. My pastor who regularly checks in. Community is rich and necessary. This is why I felt at some point that I needed to reach out to other cancer patients and survivors. I started to go to Wellspring for support. After I began to speak with other cancer patients and survivors, I felt this weight begin to lift off my shoulders. I did not have to keep this a secret and the word cancer stopped scaring me. In fact, I felt stronger each day. From my first visualization/meditation class to the very intense yoga, I realized the fierceness and strength of being a cancer patient/survivor. I go to Wellspring a few times each week to participate in workshops as well to learn about cancer prevention. I am participating in their creative workshops too. The cancer survivors and patients I have met are ready to share their stories and I am always inspired by them. I feel blessed.
Medicine
Without saying much, medicine has been a huge part of my journey. Medicine has taken the forms of the customary treatment for thyroid cancer: diagnosis, surgery, thyroid hormone replacement, and radioactive iodine ablation. But I have learned and practiced other forms of healing. Naturopathy has helped in preparing for the surgery and follow-up. The homeopathics and different products help to encourage my body's own healing response. Yoga and meditation helped me to still my mind, decrease my anxiety, and increase my positivity. Reiki and therapeutic touch were both new to me and provide balance and clarity. My own self-directed healing comes from food, books, and creativity. Food which is a source of medicine with its vitamins and minerals, antioxidants, and other healing properties. (You can see my Vegan Photo Album and Living La Vega(n) Loca posts). The books and magazines which I am reading have provided excellent sources of information regarding healing, veganism, and recipes/nutrition. (Please see my Book Reviews.) I've started going to counselling again to help me process all of the issues that are coming out of my journey. Lastly, creativity has helped me in my healing journey through art, journalling, blogging, and music. Although I have not done too much musicmaking (except learning a couple guitar chords and playing Motown and Erykah Badu songs on the piano) recently, I find healing in listening to uplifting songs. Right now, it's all about the roots reggae so my online radio is locked to SKY.FM.
Miracles
I find that miracles have been part of this journey too. Maybe you wouldn't call them all miracles but I do. When the unexpected happens or you're at the right place at the right time and things fall into place, it is easy to take these for granted and disregard it. The first miracle I had was meeting Woody Harrelson (please see my post Living La Vega(n) Loca). I am not a huge fan of Harrelson but I've become one. Since my surgery, I read Alicia Silverstone's book which inspired my veganism and Alicia was inspired by his lifestyle and activism to become Vegan. Also I had watched three of his films-- Zombieland, Defendor, and Go Further. So imagine my shock, when I saw him and met him. Another miracle came with my health. Most thyroid cancer patients stay for 2 days in hospital. I stayed for 4 days because I had hypocalcemia. Hypocalcemia is caused by a lack of calcium in the blood. Calcium is an electrolyte which promotes normal functions in the body (especially the heart). You can survive weeks and weeks without a thyroid (although you would be in "hypo hell") but cannot survive without calcium. My calcium levels were extremely low. The cause of my hypocalcemia was the removal of my 3 out of 4 of my parathyroid glands. Parathyroid glands help to regulate calcium levels in the blood and I had one of these glands. Only thing my gland was not working because it had to be moved during the operation and reimplanted. So with calcium pills and intravenously, it took four days for my calcium levels to get to a normal level so that I could leave the hospital. For the next several weeks after, I had to take very high doses of calcium carbonate (3 times daily) and Rocaltrol (an expensive medication) until my parathyroids could work. I'm happy to say that two months later, my parathyroid gland did work and I do not have to take these anymore. Also, after struggling to find a new endocrinologist (see my post The Best Cancer or A Tale of 4 Endos) without any effort on my part, I was transferred to Endo #4 (this was another miracle) who said it was safe enough for me to fly next week. This meant that I would be able to attend a healing retreat for young adults with cancer. So when I e-mailed Young Adult Cancer Canada (YACC), they still had a space available. Since it was so last minute, the prices of the flights had gone up and my AirMiles would not cover it. The miracle came when a person said they wanted to help me that same day. She wished to remain anonymous and is paying for half of my ticket. I've never had a stranger want to help me in such a big way. I asked her if I could mention this donour on my blog and what this donour wanted for this donation. The answer: to know how the retreat was for me and to "play it forward". Amazing!!!!
I will continue to add to this post from time to time as I see evidence of love, medicine, and miracles in my healing journey.
Beautiful People
Barbara Tucker 'Beautiful People'
This morning as I was inviting my facebook friends (all 680 of them) to this blog, I was struck by something. Every person on that list is beautiful. I noticed the profile photos-- people smiling, holding up their children, cherished photos, places they visited... It was all beautiful. I also wondered how certain ones were doing and realized that thanks to facebook, I am connected with so many people but I am disappointed that it is difficult to check in with almost 700 people on a regular basis. But then I realized God knows about each one, about each life, about their drama and joys, and He has the capacity to check in on each one. So then I began to say their names as I clicked on each photo. I also was thankful that I know such a community of people and realized even more that I do not need to deal with my illness alone. So many have already taken the time to share with me their own thyroid stories, best wishes, and prayers-- even one from Croatia. People are beautiful!!! Through my journey, I am learning that more and more and I have had to catch myself more than once, rethinking the intentions or actions of another. When I am wondering why so-and-so did not call, I am realizing that maybe so-and-so has got a lot going on, is going through his or her own s*#t, or just plain doesn't know. Or maybe I can check in on so-and-so. It's that simple and then I move on.
Public Enemy Fight The Power
I had this song running through my head as I was at the civic offices trying to get my driver's license "unsuspended". Thankfully, my mother-in-law-to-be gave me a ride there. I stood in a long line up for the information booth where the woman there directs you to where you need to go. She asked me to show her all of my papers, which I did. This was meanwhile there was some dude a few spots behind me complaining about how long it was taking and how I should go into the room and take a number like everyone else. He was talking to his friend and saying something like "this is not no counseling session". I got angry and told him that she has asked me to show her my papers. Then he had the nerve to say well she shouldn't and something about me keeping my mouth shut. That nearly pissed me off. Usually I do not say anything to a jack*&# like that but I couldn't stay quiet. I finished my paper work with the woman and she gave me a number. I called to the guy and said, "His comments were so unnecessary."
What amazed me is the fact that this guy could just mouth off in the line about a situation that was not my fault. I was co-operating by giving the paperwork. Second, everyone else stood in the long line quietly while he thought he was "too good" for this situation and no one challenged him about it. (Well, maybe being in a municipal courthouse had something to do with it.) I was happy with how I handled it though. Normally, I would try to ignore the fool (but fume about the situation inside), but those days are over.
Eventually a woman came over to me and said, "What an ass(*#$, eh!" I agreed. "He was probably upset about something else that had nothing to do with you," she said. That was the truth. I felt better because I tried to stand up for myself. Albeit, my voice sounded very wavering to me and hoarse.
So after all of that and speaking with different folks in the civic offices/courthouse, filling out forms, and advocating on my behalf, I finally saw some justice. I would not have to pay the $ 150 driver's license reinstatement fee. My $ 120 driving ticket fee that I had mailed in a few weeks ago would be sufficient. And my traffic court date was re-scheduled until December due to missing my first court appearance due to my cancer treatment. My license would be reinstated within a few days.
Got to love this country.
I went home and took a nap.
I've got my Whole Body Scan scheduled for tomorrow.
One More Time
Daft Punk - One More Time
Yes. I have to do my whole body scan ONE MORE TIME. :-( Ack! It's appalling. Maybe it wasn't supposed to happen yesterday (Friday) in the first place. I got to my appointment at 9:50am. (I mixed up my appointment. It was supposed to be at 8:30am. The radiation technologist just told me to get there as soon as I could.) So I show up, they do the scan, my hair is still done in this punky style. No problem.
Then I get home and I get this call. The staff on the phone tells me that the pictures did not come out right and that I needed to come in again to them again NEXT WEEK. I was shocked to hear this. On most of the websites I have checked, they do the whole body scan exactly 2-7 days after your Radioactive Iodine. When I went yesterday, it was already 15 days after my radiation (I-131). 15 days! And then they were telling me to come in next week!
I told the lady on the phone this.
So then she tells me to come in on Monday.
"Why did the pictures not come up?" I asked.
Mother's Day
Happy Mother's Day to all the wonderful moms out there. I thought of the moment I received my diagnosis last November of papillary thyroid carcinoma. Part of me had this feeling, a strange one that my ancestors, the women in my family, were saying, "Hey! What's up?" This strange blood memory moment may be attributed to the fact that thyroid issues run on my maternal side-- from my mother to my late grandmother and to my late great-grandmother. (I do not know any further back who may have had thyroid problems. The further back you go in my family, the more you get into turn-of-the-century and 1800s rural Jamaica in which I do not know what thyroid illness detection was like.) As far as I know, I am the first one to have thyroid cancer in the family.
Nevertheless, I felt like this comforting link that the women in my family had thyroid issues (whether they be hypothyroidism, goiter, thyroidectomies) and still survived. I felt almost to surrender that it was my turn now.
There is no known specific causes of thyroid cancer but there are genetic correlations as well as links with radiation exposure.
When I was about 20 years old, I went to my doctor and asked him how I could prevent myself from getting hypothyroidism. He told me that there was no way I could prevent it.
So I guess it just happened.
In my books about healing, the thyroid is discussed as responsible for emotions and also for dreams/goals/passions. Maybe my genes, my ancestors are giving me a nudge to pay attention.
Side Effects
This is a very, very detailed post. It will probably be of most interest to thyroid cancer patients or medical students or the very oddly curious.
WHAT THEY SAY: Radioactive iodine (I-131) therapy is a treatment for papillary or follicular thyroid cancer. It kills thyroid cancer cells and normal thyroid cells that remain in the body after surgery. Most radiation from I-131 is gone in about one week. Within three weeks, only traces of I-131 remain in the body. During treatment, you can help protect your bladder and other healthy tissues by drinking a lot of fluids. Drinking fluids helps I-131 pass out of the body faster. You may have a dry mouth or lose your sense of taste or smell for a short time after I-131 therapy. Chewing sugar-free gum or sucking on sugar-free hard candy may help.
WHAT I SAY: I did not show any radiation in my body after my trip through the airport scanner. However after my Whole Body Scan on May 6 (15 days after the radiation), the technician said that the image did not come out properly due to my hair thickness and trace iodine.
WHAT THEY SAY: A high dose of I-131 also kills normal thyroid cells, which make thyroid hormone. After radioactive iodine therapy, you need to take thyroid hormone pills to replace the natural hormone.
Thyroid hormone pills seldom cause side effects. Your doctor gives you blood tests to make sure you're getting the right dose of thyroid hormone. Too much thyroid hormone may cause you to lose weight and feel hot and sweaty. It may also cause a fast heart rate, chest pain, cramps, and diarrhea. Too little thyroid hormone may cause you to gain weight, feel cold and tired, and have dry skin and hair. If you have side effects, your doctor can adjust your dose of thyroid hormone.
WHAT I SAY: Thyroid hormone pills can cause side effects in the short-term. Immediately after my surgery, I received a dose of Cytomel that made me hyperthyroid. I lost 5 pounds, felt hot constantly, sweaty, had a fast heart rate, and would go to bed late and wake up early. (I also felt dizzy and fatigue immediately the first few weeks after the surgery.) This dose was reduced so then I began to feel normal. Two weeks before my radiation, I needed to go off the thyroid hormone pills completely (also known as "going hypo" or "hypo hell"). Going hypo made me feel very tired, overwhelmed, lethargic, and I gained weight. I also was not allowed to drive or operate a vehicle during this time. After my radiation was administered, I ended "going hypo" by going back on Cytomel and this time Eltroxin (two different thyroid hormones known as T3 and T4). I was to stay on these two for two weeks. I felt okay although still fatigued, heart beating quicker, and shorter sleeping periods at night but need to nap during the day. Definitely hair and skin are drier than usual. Hair is thinning too.
TODAY WHAT I SAY: Following doctor's orders, I stopped taking Cytomel and will continue on Eltroxin for the rest of my life. (Dramatic drum roll here.) I felt okay throughout the day (today) but I felt tired so went to lay down. Then I began feeling depressed and did not know why. Things began to irritate me more than usual and even a dinner at one of my favourite restaurants, I found myself wanting to cry. I left the table, went to the bathroom, and realized that maybe this depressed feeling was being caused by my switch off of the Cytomel. My depressed feeling did not stop there as I searched for a place to cry. I walked with my fiance and tried to keep the tears back, holding them in. I did not want to embarass him in front of his friends because I did not feel like socializing and I wanted to GO HOME to cry. Eventually, it became too much and we had to leave the social engagement. I was crying HARD and SOBBING and I could not stop. We took a walk. I was TREMBLING and crying. It was like the floodgates opened. We talked and like many guys, he wanted to fix it and wanted to know what he could do but I told him that I just needed to let it out and he could stay with me. Eventually, I stopped crying as I blew my nose in a receipt from my purse (thanks to my fiance's impromptu suggestion) and we returned to the social engagement.
WHAT THEY SAY: Acute Side Effects of Radioactive Iodine (RAI) in thyroid remnant ablation. Loss of appetite. Change in taste. Nausea. Sialadenitis (inflammation of salivary gland). Neck swelling. Haematological depression. Headache.
WHAT I SAY: My side effects after RAI were mostly loss of appetite which was present for the first two weeks and comes and goes still to this day (2 1/2 weeks after). I have definitely had a change in taste after my RAI although it is slowly coming back. (Today, my mouth started to taste like metal.) No nausea. No puffiness although my face looks puffy. My mouth feels dry at times but inside my nose it is like the Kalahari desert. Extremely dry. I had my first headache yesterday (Saturday). It came and went and then returned with a VENGEANCE. I napped to try to get rid of it and then eventually just needed to go to bed early.
Here We Go Again
Portrait - Here We Go Again!
The song has totally got me into the 1990s groove. This was one of my "high school years" tunes.
On another note, I was in the hospital again getting scanned. Went a lot smoother this time. I had washed my hair and scalp three times over the weekend (including this morning). My dredlocks still damp, I jumped onto the subway to the hospital. (My driver's license is still technically suspended but will be reactivated within a few days. I don't have to pay the reactivation fee.)
When I came in at 8am, I was directed to the waiting room for nuclear medicine. There was an elderly blue-eyed woman there and I listened to her speak. Her accent was unmistakable.
"Are you Jamaican?" I had to ask.
"Yes," she said.
I knew it. "I keep meeting Jamaicans in this hospital. And that's a good thing," I said.
It's true. When I had my surgery, my first roommate was an elderly Jamaican. Then when she was moved from my room (she was making a lot of noise since she was in pain, poor thing), another elderly Jamaican woman shared my room. Plus, my surgeon was Jamaican. And my medical doctor is half. Interesting, eh? I didn't plan it this way. Maybe my ancestors are connecting with me.
I used to think the hospital with the most Jamaicans was my "family hospital" in the U.S. in which many of my relatives did their internships and practicums and some still work today. (Most of my relatives work in the health industry in such professions as osteopathic medicine, psychiatry, maxillofacial surgery, pharmacy, physician's assistant, cytotechnology, nursing, biomedical engineering, nursing aide, etc. HEALING PROFESSIONS ARE IN THE BLOOD.)
Cool Scan Machine Photos
Anyway, here are some cool photos of the futuristic machine which took the pictures for my whole body scan. This machine works slowly and is literally about 1 centimetre above my face and neck and other body parts. Also, I could not move and had to be strapped in. So I closed my eyes and meditated. It was the only way I could avoid thinking about the "itches" that I felt on my ankle, leg, ear, etc. It doesn't hurt. You just hear whirs and buzzes and electronic beeps. This time it only took about 25 minutes. (Friday it took 30 minutes.) Hopefully the technologist got a better scan this time.
Results, finally!!!
My very cool radiologist both phoned me and e-mailed me yesterday.
This is what she said in the phone message (aside from a few minor edits):
Your scan was reported quite a few days ago, the day you came in to have the extra pictures. Everything looked fine... There was a little focus of activity in the neck where the thyroid gland was. That we see basically all the time after anyone had surgery. It's very difficult for the surgeon to get every last bit of thyroid tissue out. There is almost always something left in the neck. That is really why we give you that therapy dose. It could be normal thyroid tissue or thyroid tumour. The fact that we give you 100 miC should treat that, kill that. And there is nothing nowhere else. Probably what endo #4 will do again will check you with a tiny bit of iodine in the year.
Then Endo #4 called me today. This is what he said (again with minor edits):
So there reveals that there is some uptake (activity) in the neck and this is normal. The presence of any remaining thyroid cancer will be revealed by follow-up blood test results. We usually wait a year to give the iodine treatment again depending on the blood test, depending on what the blood test results reveal. You probably wouldn’t receive iodine soon again since you are not in a high-risk group.
Wonderful news! I'm celebrating!!!!
But both of them said they have heard nothing about this mysterious symptom I have been having-- NOSE SORES!!! Yes. The grossest nose ailment known to man. It's funny since I have looked it up on the internet and others have claimed to get this after radiation (albeit, very rare). The thyroid cancer online support group I wrote to had very few who claimed to have nose dryness, but no actual nose sores. (These bloody scabs growing in my nose which are uncomfortable and tight.) Apparently, these too should go away with time. One person said a year.
Aaaaahhhh!
Now what?
I find myself at an interesting juncture. As I thought about the results and processed what the Endo # 4 and cool radiologist shared, I realized that based on what they said, all they know is that the thyroid cancer has not spread. (Yay!) But what they don't know is if the detected "activity" in the neck is cancer or not. So follow-up blood tests will determine this. And these tests will happen over the next coming months. I may or may not have to do the iodine again, albeit at a lower dose.
So now I ask myself, now what?
Live life normally, I suppose. However, the news is a little unsettling, isn't it?
The Shift
For my regular readers, you have probably noticed that I have not blogged as much over the last two weeks. Lately, I've been a lot more tired and as I've learned from other thyroid cancer patients, this is part of the recovery. I still feel like it is difficult to accept. I feel like I should be feeling more energy and I should be feeling less tired but in fact it has been just the opposite. It's especially odd for me since the weather is getting really nice and sunny and my mind is telling me, "Go outside, get active..." And my body tells me the opposite. At the Thyroid Cancer Patient's Forum, some thyroid survivors said they felt this urge, this feeling of "have to" or "want to" do lots of stuff but not feeling able to carry it out. I feel that way about now. I'm used to mentally behaving in my "yan energy" in the sense of get up and go running around but my body physically is not able to carrying out those things right now. My body is saying rest and be calm. Yet I feel sad like I'm missing out.
On Monday, I went to see a Traditional Chinese medical doctor who was recommended to me by a friend of a friend. (Thanks Alison.) I almost cancelled the appointment because I was sooooo tired and it was only noon! (I woke up at 9:30am that morning.) Instead, I decided not to cancel and instead went to see her. Alison was correct, this doctor was awesome. She took the time to explain to me the philosophy of Chinese medicine-- the theory of the 3 meridians in the body, the acupuncture points, and chi. According to this doctor, since I had my thyroid removed, my yang chi energy is very low. (According to my new friend Josh who is I met at the YACC retreat, yang is the "male, sun energy, the get up and go energy as compared to yin which is the more peaceful shady calm energy." That sounds right since I definitely don't have much of the "get up and go energy".)
Meaty is looking really meaty
I have decided to write an update on Meaty since he has not received any publicity recently. Many of you may know Meaty as my thyroidectomy scar. On April 15th, I posted His Name is Meaty which showed photographs of his healing and transition each week from January to April however I know that he continues to heal. In fact, I was told that it will take up to two years for Meaty to heal completely. Since my last update, Meaty continues to make the transition. My biggest fear was that Meaty would begin to keloid. If you are black, brown, or olive complected, you probably already know what a keloid is, have one, or have someone in your family with one. If you are white, you may already know because your friends of colour may have complained about them or you might be one of the rare persons to have one.
According to wikipedia:
Keloids are firm, rubbery lesions or shiny, fibrous nodules, and can vary from pink to flesh-coloured or red to dark brown in colour. A keloid scar is benign, non-contagious, and sometimes accompanied by severe itchiness and pain, and changes in texture. In severe cases, it can affect movement of skin.
Now doesn't that sound spectacular.
I have been quite concerned before my surgery that my scar would form a keloid. My sister in New York gave me a list of treatments that her great dermatologist gave her to give to me. I also have tried to use naturopathic remedies and creams for the scar as well as Vitamin E. Then I began to use a product called ScarGel that contains silicone over the last two months. Silicone is supposed to reduce a scar. Also with my surgeons recommendation, I began to massage the scar by stroking my finger along my skin repeatedly. After the Thyroid Cancer Patient's Forum, I heard a number of patients say that they were pleased with Bio Oil for the reduction of their scars. (A number of thyroidectomy patients on other sites also recommend Bio Oil.) So I have been using Bio Oil this week. I know one person so far who has used the steroid injection and it helped reduce her scar.
So you know when they say if you focus on something too much you only magnify it, I wonder if that is what happened to Meaty?
I saw my surgeon today and he agrees that Meaty is keloiding so he has suggested a series of monthly injections of a steroid which are to shrink it. He said I would need a numbing cream before the injection so it would not be so painful. There is also a small risk of hyperpigmentation (lightening the skin in the area of the scar).
I have noticed a few different ways that others' thyroidectomy scars have healed. I notice on many white people that the scar tends to be a pale thin line. On many Black people, like my mother, the scar is slightly thicker and the same colour tone as the surrounding skin. I have also seen scars heal differently depending on whether someone has had a second operation and/or neck dissection.
I don't mind if my scar is visible, I just don't wish it to be soooo noticeable. I also don't hide my scar especially when I know I am going to be around other cancer patients or survivors. (And I don't want to always have to cover up my scar.) At times I will wear a scarf or sunscreen on it if it is very sunny or if I wish to dress up or if I am meeting new people.
Occasionally, if I am on the street or talking to a stranger, I will see their eyes drift slightly down and I think they are looking at the scar. I wonder what they are thinking. 'Hmmm... I wonder if she was in a knife fight?' 'I wonder if she was stabbed in her throat?' 'Poor thing. So pretty, if it weren't for that scar.' Maybe this is all in my head. I am actually proud of my scar but I would much rather if they asked about it out loud instead of the look.
I added a clip of supermodel/actress Sofia Vergara talking about her thyroid cancer I could not find the interview in which she mentioned that there is a lot of things you can do for the scar these days. I notice that in none of her photos is her scar showing so whatever she used must be working. (Then of course there are the camera tricks and photoshop.)
Nevertheless, if anyone has ever had the steroid injections for their scar, please let me know how it went for you. You can e-mail me at: bluebutterflyblog33@gmail.com.
Mortality and Vitality
Mortality is a subject that I have not thought much about during this cancer journey. When I first was diagnosed with thyroid cancer, I did not think about death. Perhaps, I put it out of my mind. I tried to focus on other stuff. I remember at Christmas feeling the need to buy the nicest presents for my family members and I totally blew my budget. I felt this compulsion to give them the nicest gifts because, "I didn't know what would happen after my surgery..." At that time, I couldn't see beyond the surgery. I had never had a surgery before and so the idea of surgery terrified me. Now that I have had surgery and radiation and hopefully, nearing the end of cancer treatment, I have been thinking about mortality. It's come up a few times. Mortality is something that we humans face each day. However, some of us don't think about the fact that we will die one day. I know that mortality didn't become a thought again for me until the last few weeks. Despite all the things that I have gone through with my cancer treatment, I am still alive. I still live. I defy the odds that although there was this malignant thing growing in my body, I choose life and I live. In some ways, cancer is a gift for me especially at such a young age. Cancer forced me to soberly look at my life so I began to assess whether I was pleased with it. I was happy to know that I am satisfied with my professional accomplishments. Now that I am looking forward on the other side of my diagnosis (and surgery and radiation), there is so much that I want to do, feel, and be even though it will all come to an end one day, as it will for all of us and we don't know when that will be. For a young person to get cancer, it is like you are being given a serious reality check that you are not immortal. I didn't have to wait until my retirement, looking at my grandchildren or senior years to learn this, but instead during my early thirties. And although thyroid cancer has a 95-99% chance of recovery, you become aware that it, life, can all end one day. Thankfully, I have been given an early "wake up call" that I have only one life to live and I need to make the most of it. So in the face of mortality, I have life. I have vitality on my side and life is temporary. I am reminded of this during my Cancer Exercise group. Today is my second day and I am appreciating it. The first session helped me to feel more confidence in my ability to do physical activity again and that it can be this easy and manageable to get into shape again. I don't have to be so hard on myself. Although I ran a half-marathon (21 km) two years ago, I still can do that again one day but for now I am taking it slow. And today, I felt that I could begin to trust my body again that it will do what it is supposed to do, that my limbs and my heart are doing what they are meant to do. My body still works. As I look around at the other cancer patients and survivors completing their exercise programs, I feel like they are expressing victories over death, laughing in the face of cancer. Despite their mortality, they are living vitally and I am inspired. So I have attached this photograph of my feet standing on a trampoline. My favourite thing to do in the whole exercise space is to jump on this trampoline and feel the vitality in my legs launch me into the air and then back down to the surface. I am vital! I am alive!
Money Talks I
Adventures of Stevie V - Dirty Cash (Money Talks) - Official Video
Remember this little ditty from the 1990? For some reason it made me think of Beverley Hills 90210. I also think of the desperation of drug addicts who prostitute themselves for a fix. (Yes, seedy.)
On another note, I recently read a study that suggests that cancer is a risk factor for bankruptcy. Of all cancers, thyroid cancer has the second highest rate of financial bankruptcy than other cancers at 4.8% (behind lung cancer at 7.7%, in front of leukemia/lymphoma at 3.6%). I pondered the reason a little bit today with two survivors. Now I think I know why.
1) Thyroid cancer is now the number 1 cancer among young women. We, young women, earn less than older adults especially since we are relatively new in our careers. So we are often working at a lower salary grade. Second, many young women are in the time of their life starting young families so they are not working the same number of hours because they often have reduced income due to maternity leave and childcare. Third, due to gender bias and inequality, women are still earning less than their male counterparts. Lastly, we are young. We don't think we are at risk for cancer because we are young so we live our lives, we work hard to get ahead and party harder, we do not save for emergencies (unless you have a little stashed away), and sadly are already in debt (thanks to student loans and credit cards). (I know that some of these may not apply to you but you are the exception. :-)
2) Thyroid Cancer is still called the "good cancer". Thyroid cancer is generally still one of the most treatable and curable forms of cancer, that is if you have the more common forms of papillary, follicular, and/or differentiated. So most endocrinologists, in my experience, indicate that one is ready to go back to work 3 weeks after surgery and 4 days-2 weeks after radiation. This is does not nearly reflect my own experience or that of other thyroid patients. Physically, the mobility of the neck returns after three weeks and the radioactivity does wear off but if you are adjusting to thyroid medications or especially if you have to "go hypo", without Thyrogen like I did, to prepare for your radiation, it can take several months to a year to feel completely normal. In addition, some people require a second surgery which then results in more necessary recovery time. Since the thyroid gland controls metabolism and protein production, the absence of a fully functioning thyroid gland can make one feel totally off balance, lethargic, and not well for work. A total lack of functioning thyroid hormone mimics depression symptoms. Regardless of these factors, thyroid cancer patients look so normal. Aside from the scars on our necks, we are fairly healthy looking (albeit extremely tired.)
I am often told that I look good for what I have been through and it looks like nothing happened. Thanks for the compliments. But I think this is one of the reasons why thyroid cancer gets the shaft, why more thyroid cancer patients are bankrupt, and why it's still so understated.
There are no major fundraisers or campaigns for thyroid cancer like there are for other cancers, e.g. THE RUN FOR THE CURE (breast cancer), UNDERWEAR AFFAIR (cancers below the waist), and TEAM IN TRAINING (lymphoma and leukemia.) Also, Canada's thyroid cancer organization, Thyroid Cancer Canada is fairly new, becoming a non-profit in 2002 and charitable organization in 2003. It is run by volunteers and a board of director and funded by donations. (Despite this, TCC does amazing work but imagine what could be done with paid staff.) Perhaps, it is because thyroid cancer patients look so normal that the "healthy looking sick people" do not get funding. Don't get me wrong. I am not negating the financial toll of cancer on the whole also know that folks who have other types of cancer. But there does seem to be a gap when it comes to thyroid cancer. This is also why I strongly believe that there needs to be more advocacy for thyroid cancer especially regarding the causes.)
3) Financial support is difficult to access with thyroid cancer. Thyroid conditions are quite prevalent today. Hypothyroidism, hyperthyroidism, Grave's disease, Hashimoto thyroiditis, and various types of thyroid cancers are the most common thyroid conditions. When the endocrinologists said to me that it takes only 2 weeks to return to work, it negates all of the symptoms that I am experiencing, especially those that prevent me from working. When the endocrinologists and surgeons say it is only two weeks, it is even more difficult to access other types of funding. Thankfully, I received government sick benefits for fifteen weeks which equalled about 40% of my salary and did not pay for March Break but before I could access that I had to use up all of my sick days. If I was to return to work after this and needed a day off to go to an appointment or I was not well, I would have to take days off without pay. Another thyroid cancer survivor told me that our condition does not qualify for the Government Disability like other cancers do. Thankfully, after over 3 months of prayers, forms, phone calls, blood tests, doctors' visits, and waiting for an unspecified amount of time, I did qualify for a disability claim through my employers' insurance plan. At moments, it felt like it would not get through. I was so happy. But then I found out what the amount of my coverage would be: less than 25% of my salary which is about $ 950/month. That's right. I will be living on 1/4 of my salary for the summer. $ 600 of this is rent, so essentially for $ 350 I will need to eat, transport, and entertain myself. I feel a bit disappointed which I fully acknowledge on the other hand, it is better than nothing. I have hopefully ended the main portions of my treatment so I will return to full-time salary in September. However this is still a shock. If my thyroid treatment were more complex or required more time off, the impact would be a lot more.
4) Thyroid cancer numbers are increasing. The incidents of thyroid cancer are on the rise. I know of two other teachers in my school board who are younger than 35 that are also experiencing thyroid cancer. I met one woman who knows 3 women going through thyroid cancer now. Another woman I spoke says her friend knows 5. I'm not ready to say "epidemic" but the prevelance is high. Imagine the financial strain if we all were asking for money.
Since some of you might be facing the financial pains that come with cancer, I have listed two resources from the Thyroid Cancer Canada website.
For those living in Ontario, Canada, there is a financial assistance booklet from the Princess Margaret Hospital/University Health Network.
Also read Kairol Rosenthal's blog. She is a thyroid cancer survivor and author of Everything Changes: The Guide to Young Adult Cancer in Your 20s and 30s. She has a really cool post about cancer and medical debt. Although she is an American and her references are a bit different, the stats are similar and we still feel the same pain.
How have I been coping financially so far?
First off, let me first say that I am blessed. I have mentioned it in my post Nature Walking 1, I have been provided for and I am trusting that I will always have enough. My faith in God has been really helpful in this regard. So prayer, and prayers from friends, family, church folk, and strangers, has been helpful in this regard. So even when I thought I would be left in a lurch with less than 25% of my salary (and a wedding coming up next year), I am trusting that I will be okay. Jean at Wellspring said the time of to recover is a gift and instead of gold and diamonds, I'd have time this summer. Instead of going out for dinners, I'll go out for tea. In one way, having less money forces me to do less. (I'm a bit of a workaholic and busy bee.) I will have to slow down. Second, I will never underestimate having an emergency fund. No matter how small the amount you could put aside into savings each week, do it! Thankfully, I had a small emergency amount which I have used. Even on my 40% of my salary, I have been stashing a few dollars aside each week. This comes in handy. Third, my tax return could not have come at a better time. Plus, having credit cards helped (especially those with a balance). I also cook a lot of food so my fiance and I eat at home a lot more which saves money. My fiance and I do not have cable so that is one bill that we don't have to pay. I often take public transit to avoid expensive parking fees. I cut corners here and there. My mother is paying my car insurance. Bless her. My fiance is also a musician and works retail so although our combined incomes are not large at the moment, we have been able to make do with what we have.
Coming up in the next post... Why do I have thyroid cancer?
Money Talks II
The Ojays - For The Love of Money LIVE, 1974!! I remember hearing my dad play this O'Jays' classic as I grew up.
After posting Money Talks I, I received an excellent and detailed commentary from Everything Changes: The Guide to Young Adult Cancer in Your 20s and 30s author Kariol Rosenthal. (You can check out her blog and learn more about her book here.)
Kairol Rosenthal, author of Everything Changes: The Guide to Young Adult Cancer in Your 20s and 30s
This was very exciting for me because I love comments and plus it also comes from not just an established author, but an established Thr'yvor, cancer survivor author. I decided to do Money Talks II and post her commentary about the "Cancer diagnosis as a risk for bankruptcy" article. Kairol's commentary is worth a read and she also gives an American perspective on the topic. I have posted her comments below.
Kairol Rosenthal's Comments to my post Money Talks I
Great post. I’ve been mulling this over and have come up with a few hypotheses too. I wonder what you think:
1. Thyroid Cancer has a higher survival rate.
Thyroid cancer has overall survival rates much higher than most other cancers. (According to the National Cancer Institute, 10-year overall relative survival rates for patients in the United States are 93% for papillary cancer, 85% for follicular cancer, 75% for medullary cancer, and 14% for undifferentiated/anaplastic cancer.) Because we have much longer to live than patients with many other kinds of cancers, we have more time for bills to rack up and more time to go into debt and need to file for bankruptcy. For example, I have had the good fortune of racking up more medical bills for my thyroid cancer than my friend Erica, whose particular form of brain cancer had a 2% survival rate. She died less than two years after diagnosis, and ya can’t file for bankruptcy when you are dead.
2. Faster recovery times.
Most thyroid cancer patients are able to go back to work fairly soon after treatments such as surgery and radioactive iodine. (My recovery too way, way longer, but I know I’m not the norm.) Because many of us continue to work through out our disease course, I bet that lots of US citizens with thyroid cancer, who are still working and earning an income, don’t qualify for government assistance like Medicaid, or other financial relief based on income. So I wonder if it could be because we are more so often physically able to work as compared to other cancer patients that we don’t as often qualify for government assistance, have to pick up more of the costs ourselves, and therefore file for bankruptcy more often.
3. The Asian factor.
This study was limited to only the western half of one state in the United States. I think the study should be called ‘Cancer As Risk factor for Personal Bankruptcy in Western Washington State’. There might be so many factors that pertain to western Washington, and not to other geographic locations, that account for the thyroid cancer being the second highest rate of bankruptcy. For example, at 16%, the Asian population in the Seattle-Tacoma area is much, much larger than elsewhere in the United States. Being Asian is one of the top-five risk factors listed for getting thyroid cancer. Is a higher percentage of the thyroid cancer population in western Washington Asian? And if so, are there cultural factors that could impact why Asians would also have higher bankruptcy rates, such as higher rate of uninsured, or overall lower incomes? I don’t know the answers to these questions, but do wonder if issues like this contribute to the outcomes of the study showing thyroid cancer as the second highest cancer group to file for bankruptcy. I hope this study has garnered enough interest for it to be repeated in a way that accounts for geography and population factors.
4. Predisposition to bankruptcy prior to diagnosis.
It was interesting to see that although thyroid cancer was the second most often filed for bankruptcy, lung cancer was still DOUBLE that of thyroid cancer. The two highest risk factors for lung cancer are smoking and exposure to second hand smoke and to other caustic materials and elements like asbestos and nickel. Smoking rates are almost double among people living below the poverty level and exposure to caustic materials is also much higher among the poor. So it seems possible that poorer people have a higher chance of getting lung cancer. This is a factor that the study does not consider. And it makes me wonder if there could be similar factors that could predispose the population in western Washington to higher rates of both thyroid cancer and poverty.
Thanks again for giving me much to think about.
Kairol
July 2, 2011 2:25 PM