Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
Tuesday, November 4, 2008
Making Some Changes
Weight- Stable and lookin’ good, Daily Meds-24, Pain meds-Imitrex (still working, woo-hoo),30 mg oxycodone Temp- 100.2, 100.3 & 100 (let's not freak out, my doctor knows)liquid, 1 cp. Coffee, 2 cups of tea, 3 glasses H2O Food- 4 pieces whole wheat toast with butter, 3 packages kit-kats, 2 honey buns, broccoli & cheese, spaghetti and meat sauce Exercise- 35 minutes stretching & dancing(I’ve got moves), ¾ mile walk
Hi. I'm a PC, but I'm getting a beat down for forcing my user into buying software that is not compatible with anything. She has her old hard drive, with her precious files and pictures, which she is now using as modern sculpture. I’m flying out the window now, and my owner is on her way to buy a Mac.
I am ready to make some changes. I’m willing to make some life altering decisions and stick with them.
I’ve never been much for “Miracle Cures.” I’ve been given and have been suggested all sorts of “treatments” for my cancer. Some of these methods are expensive and completely unproven.
I have taken Native American Herbal teas that were supposed to shrink my tumors.
I’ve been recommended twenty different supplements to increase the likelihood my chemotherapy would work and inhibit tumor growth.
I’ve drank anti-oxidant rich smoothies with blueberries and tahiatian noni juice for weeks.
I’ve been given five different sales pitches from 5 different people telling me they have the special dietary juices to cure me.
People have recommended both hyperbaric chambers and oxygen deprivation to kill the free radicals.
I’ve seen three different specialists at three different hospitals.
I saw a naturopath that prescribed all sorts of homeopathic remedies. This method, in the absence of other treatment, did manage to shrink my tumor to below .5 cm. This is where I’ll go back to if my options start to fail again. I paid $650 out of my pocket for this.
I have a lymphatic specialist in Germany who is willing to custom create my care. I learned to read German just to understand their scientific research studies and methods. I can read french and spanish too.
I had a mycologist (mushroom specialist) recommend I eat peyote and “throw up” my cancer.
I’ve been told if I just focused, and truly believed my cancer would go away, it would. I was told I could use my “mind over matter” and heal myself. This is insulting. Never say this to a cancer patient. I don’t want to be sick and be told I’m weak.
I was told there is a psychological profile to predict who will get cancer. Maybe there is, but with 1 in 3 woman getting cancer and 1 in 2 men, I find it hard to believe we all have the same personality, Unless this man has discovered the traits that binds us all as humanity.
I was told God was punishing me and that I needed to repent for my sins before being forgiven and healed.
Ironically, this advice came from a man who was diagnosed with throat cancer a month later and died.
I’m very sorry he likely died believing his thought process. God will cure me on his own time. I don’t get to make the master plan.
I’ve been told if I just did something different in my life I wouldn’t have these issues and would be able to live “normally.”
What exactly should I have done differently?
People have looked down their noses at me and suggested I should have eaten a locally grown, vegan diet.
I get a lot of pleasure telling them that I grew up a farm girl. Yes, me, shut those jaws. I bailed hay with the family and played in cow fields.
Who would have guessed I knew the names of the pigs and cows I ate. I saw them slaughtered and I helped pack up the hormone free meat. I was over eighteen when I first bought meat from the grocery store.
I also ate eggs from the farm, and we canned our own vegetables. Don’t snub me and lecture me on my meat and potatoes diet. I was a “localvore” before the term existed.
I was also a vegetarian as part of my “hippie phase” in junior high, but mostly, I said I was a vegetarian because my memere and pepere were “native” and had to use all pieces of the animals they killed. I didn’t want to chance what would be in the food, like head cheese and blood sausage.
I didn’t use bottles with BPA or drink soda until adulthood.
I could not have joined the family business. Maybe, if I didn't play with tractors and trucks, or if I didnt pave black top, which I new could give me black lung, I may have been okay.
But then I wouldn't be the woman I am today.
I’ve never been accused of contracting cancer through a sedentary lifestyle. I actually heard a lot of rumors I was anorexic in high school. This idea didn’t fit with all the carbs I was eating before my games and all the proteins for my muscles. I was an athlete, and lucky me, I was blessed with that body genetically.
Don’t ask teenagers if they’re anorexic. It’s as uncouth as suggesting that an overweight adult eats too much or doesn’t exercise, which most people don’t do without evidence and a strong, long bond with the person.
There was another girl in high school that I heard this about more frequently and I always defended.
She became a home town celebrity and placed 26th in the Boston Marathon in an attempt to place for the Olympics.
You know who you are, thanks for the comments. I think about you too and I hope you’re enjoying your new house and your homey job. I always thought you were great.
People need to remember that what is popular isn’t always right and what is right isn’t always popular. I’ve also seen a very catchy bumper sticker that tells people “Average Women Do Not Make History.”
Moving on. . . .
We’ve all seen the articles, the books, and the public announcements with paid advertising announcing to the world that the United States holds the cure for cancer and the doctors are hiding it from the patients to make a profit.
Completely untrue, health practitioners take an oath to do no harm. If they had the cure, we would know it. These people have dedicated their lives to their education and research to improve the lives of patients. As a general rule of being a human being, they are not going to turn against everything they’ve worked for.
They do not get paid that well. They are generally responsible, empathetic human beings. They’d get paid more and have less responsibilities if they were financiers or bankers. Then the government would have their backs.
Engineers make the same amount of money after 4 years of schooling and their jobs don’t require the hours, stress, and anger from patients and families.
They would have gotten paid more opening night clubs and sleeping with regulars or being recruiters and throwing prostitutes at the next 17 year old basketball star, but they’re not.
The insurance companies and businessmen did not take an oath to do no harm. Their goal is to post big profits for stock holders. They interfere with treatment and would hide a cure. Now, you know who to aim your anger at.
Some changes are backed by scientific data and should be considered as a possible co-therapy along with standard medical treatment. Nothing should be used alone to cure yourself. All suggestions should be used in conjunction with traditional medicine and reviewed with your specialist.
I met a beautiful 36 year old, newlywed who had been diagnosed with breast cancer 6 months earlier. She had decided to treat it with nutrition. Nutrition alone didn’t work. She started asking for traditional treatment when it was too late. She was given patient controlled analgesics that couldn’t even cure her pain and given a month to live.
Moral of the story, do the tried and true treatments and add co-treatments.
I’ll restart my homeopathic remedies eventually, when I am not concerned about interactions.
I’ve thrown out all my old products and will only use organic from now on. I don’t think this caused my cancer, since I’ve never been a make-up girl.
I did not part with my Versace Red Jeans perfume. That would have been too much for me.
I’m returning to my all organic cleaning products.
Maybe, I’ll move away from the powerlines or push to have them buried, since they’ve been linked to childhood leukemias. We’ll see.
Maybe I'll start storming around Clarenoble down the street, and "encourage" NH's epidemiologist to explore the cancer cluster that follows the jet streams away from the plant.
I’ll be talking to a local acquaintance of mine, a local chiropractor who I’ve coached sports with over the years
These ideas are just for information. It’s natural to want to hold onto life by your nails when you may be losing it. Please, do not allow yourself to be taken advantage of. Talk to your Doctor or Nurse Practitioner, generally anyone on your cancer team. They’ll help you sort out facts from fraud.