Wednesday, October 22, 2008
Your B's and Q's
So this is what he said. Cancer cells generally use glycolysis rather than respiration or oxidative phosphorylation for energy. This is an anaerobic, without oxygen, process. This is a result of the shortage of oxygen or hypoxia that exists in tumors and damaged mitochondria. Usually dangerously damaged cells kill themselves via apoptosis, a mechanism of self-destruction that involves mitochondria, but this mechanism fails in cancer cells. According to the Warburg hypothesis of cancer growth, though cancer is caused by mutations in the genome of the cells, it is allowed to progress because of the metabolic changes in mitochondria without which the cell would apoptose or self destruct. Hence and according to Warburg, cancer should be interpreted as a mitochondrial dysfunction. This is called the Warburg Effect. Now my question is how many doctors remember this as part of their basic biology studies?
In 1961, scientists saw that people with cancer had little CoQ10 in their blood. They found low CoQ10 blood levels in people with myeloma, lymphoma and cancers of the breast, lung, prostate, pancreas, colon, kidney, and head and neck. Coenzyme Q10 (CoQ10) is a natural energy producing nutrient involved in a wide range of body systems. CoQ10 is located in the mitochondria, tiny power plants found in every cell in the body, and effectively supports their energy producing pathways to help fuel the body's daily activity. A potent antioxidant, CoQ10 also defends cells against harmful free radicals. Thus CoQ10 plays an important role in generating cellular energy and works inside a cell's mitochondria to provide the supplies necessary for energy production. CoQ10 is an electron/proton carrier that helps the mitochondria to produce adenosine triphosphate (ATP), the body's energy source. This is vitally important because mitochondria must continually generate ATP to support every cell in the body. CoQ10 somehow helps this process by enabling the mitochondria to use oxygen and thus aerobic cellular respiration.
Our bodies can manufacture CoQ10 but we make less of this as we age. Secondly, the B vitamins, niacin (B3), folic acid, and pyridoxine (B6) are required for the body to manufacture this nutrient, and most people don't get enough of these B vitamins or they are depleted through prescription drug use, stress, alcohol, coffee etc... Allow me to add now how statin drugs, which every older person is now on, depletes B’s and thus CoQ10. But also contraceptives, anti-inflammatories and the list goes on and on. And the body needs some fat to help this work, and you guessed it….omega 3’s are the fats to do so.
Coenzyme Q was first discovered by Professor Fred L. Crane and colleagues at the University of Wisconsin-Madison Enzyme Institute in 1957. In 1958, chemical structure was reported by Professor Karl Folkers and coworkers at Merck, the pharmaceutical company. Can you say follow the money trail? Fast forward to the University of Alberta’s DCA study showing that the mitochondria in cancer cells have just been turned off and can be restarted with the use of something called DCA. And once the mitochondria are back in action, they seem to be able to kill the cancer cells. There is a small clinical trial of DCA going on through the University of Alberta in Canada right now. Go to their website for more information at http://www.depmed.ualberta.ca/dca/
So here’s what I think. We are in a pathetic nutritional state, controlled by the corporate machine or the medical institutions that claim to be there for us, the patient or the consumer. We eat processed food high in Omega 6’s and nothing really green except for that piece of iceburg lettuce on your McBurger. We have reduced the B vitamins in our bodies via stress and then reduce it further by what we do for stress, like not sleep well or enough, drink one too many Starbucks, have one too many Margaritavilles. Then we take meds that our doctors prescribe to us, thinking they are helping us but in fact are depleting our stores of what we barely take in of B vitamins. Statin drugs or high cholesterol drugs are all the rage like a new fashion trend. These deplete our B’s and our CoQ10’s. We don’t exercise daily to rev up our respiration. Lack of B’s equals lack of our bodies producing CoQ10. And lack CoQ10 equals the mitochondria not getting the oxygen they need to do their job.
I find it interesting to note that cancer is historically linked to smoking and smoking depletes oxygen to the cells and as well as yet again depletes B’s. Another note to add. Many people I have spoken to who have had cancer say they were stressed in some way before cancer and remember how stress or what we do for stress depletes the old B’s. Here’s one, being tired is a symptom of cancer and in fact the only symptom my grandmother had when diagnosed with advanced cancer at 91. Those little mitochondria are not working right for energy. Another one for you. Studies have shown that people who are prayerful and meditative either recover better from cancer or don’t get it because…lack of stress.
So let’s say, there is some genetic change in the cell from an outside environmental source or toxin. In my case, that would be too much estrogen I consumed from all the animal products I ate. I used to eat a lot of non organic red meat and dairy. For a while, my mitochondria are doing their job. They are killing off these bad cells. Barely keeping up. But then I got very stressed and I didn’t sleep well and I drank too much wine and then consumed coffee in the morning because I was tired. I am short on my B’s. Can’t produce the CoQ10. I stopped taking even the multi and forget ever adding more B’s or something called CoQ10. Did you miss that memo too? I didn’t exercise. So my mitochondria turned off because of this lack of CoQ10 and the subsequent oxygen it was looking for. The bad cell is not destroyed. The cell wants to live and can now do that without sentry CoQ10 in charge and finds a way to grow without the oxygen that the healthy cell uses. So people who already have cancer probably further deplete the B’s and CoQ10 with all the drugs they take for chemo. I’d like to mention that nutrition was barely mentioned in my cancer journey last year. I guess it was something I could have explored then if I had the sense to ask someone. The only nutritional thing mentioned was increase your protein with radiation. But no why. So I did and I also increased my zinc with a tablet for the short term as longer term will raise your cholesterol. Protein equals meat and meat equals zinc and zinc equals your tissues regenerating. No one told me that. Oh maybe it was in that large packet each cancer patient is supposed to read while navigating the insurance nightmare we all face. Trying to meet with doctors and make decisions. Try to maintain your sanity all the while trying to maintain your home or your job. Oh yeah, I had time to read that 300 page packet of info. Mostly it was chemical related and not nutrition.
What does all this mean in the daily grind of what to do? Review the Stinkin’ Armpit entry and first of all get rid of toxins in you and around you. Remember the world around you is a corporate machine and no one is going to help you except you in regards to this. They want you to buy and don’t care about your health. And remember the government is not really looking out for your best interest. We hope your doctors will but none of them seem to know anything about nutrition and seem to be on an auto pilot cruise control with a chemical agenda. Sweat! And now I’m thinking maybe hot flashes are a great way to get rid of toxins. So ladies, when you’re feeling like an atomic bomb just went off and you are soaked, think I am ridding my body of toxins. Yeah!
Second reduce your stress and take supplements and try to eat right. For some reason this makes more sense to me when now I know how this works at a cellular level versus the doc telling me again and again, to exercise and eat right. Take a B complex in addition to your multi. Take CoQ10 in addition to your B. You could make sure you eat sardines and kale everyday but somehow I doubt that you will change your diet that drastically but consider it. I have to add here that I read an article that asked a bunch of doctors what did they do to stay healthy. The commonality was they all took an extra B. Has your doc ever told you to do that? Rev up the heart once a day even if you just run up and down the stairs. I do not know if once you have cancer if this will turn those mitochondria back on. But I am thinking if there is a wayward cell roaming around my body, I’m sending out the guard with refreshed mitochondria filled with oxygen and CoQ10. I am thinking of a couple people right now whom beat cancer but then it came back. One woman I am thinking of is now going through an ugly divorce. Stress. I am thinking of Lance Armstrong who certainly took in lots of oxygen but per his book didn’t lead a healthy and stress less lifestyle before cancer. And now here is something to contemplate.
There is now talk of how high blood glucose levels -- even before they reach the level needed for a diagnosis of diabetes -- may signal an increased risk for cancer, according to a new study being published in the March issue of Diabetes Care. Again it is related to how our cells metabolize energy. I saw a commercial the other day about a new diabetes drug and all I could think of was how fat the people were in the commercial. Lose weight because will the drug like most drugs have side effects? Will the drug deplete necessary nutrients that you actually need to stay healthy?
The cure is in the prevention and don’t get to the point of cancer. Review what you are doing wrong and make it right. And if your mitochondria are still knocking out bad cells, great but feed your mitochondria with all they need to keep you healthy.
Wednesday, August 27, 2008
Coming Soon to a Blog Near You
You are what you eat
-A listing of the foods and supplements I now take and my magnificent obsession with nutrition
Your B and Q's
-The connection between B vitamins and Coenzyme Q10 and cancer
Check out this maverick idea for cancer treatment from the University of Alberta:
http://www.expressnews.ualberta.ca/article.cfm?id=8153
I sent this article to Australia and the Ludwig Institute for Cancer Research. The Ludwig Institute will play a big part of the Olivia Newton-John Cancer and Wellness Centre's clinical research programs. They were interested and I have been emailing them and they actually email me back. The National Institutes of Health here in the United States said, "Thanks and now we will create a new drug." Actually it was a form letter. No further communication. Can you say follow the money trail?
So here is a link to a youtube mini film called “Portrait of a Survivor”. It has been entered in a first-ever film festival devoted to raising awareness about breast cancer.The Breast Fest Film Festival will be in Toronto, Canada in November. And you can review the films on line then and vote for your favorite. Can you find me in the film? Hint, I have the biggest mouth and am pretty animated. I've never been exactly quiet. Here is the link:
http://www.youtube.com/watch?v=jf23m77NQsA
Tuesday, August 19, 2008
Your Stink'in Armpits
So how did this all start? It actually started the fall before breast cancer, fall 2006, when I got this wild hair to forsake the antiperspirant and give deodorant a try. So I tried them all and my armpits were stinky. If allowed to sweat, they reaked. Then something changed where as the left armpit didn't smell and the right one did. For your information, breast cancer was on the right side. Fast forward and after the cancer diagnosis and onward ho to radiation, I really smelled. In fact, both sides smelled and I had to apply deodorant several times a day. I always apologized for the stench in radiation but then I figured these ladies are probably looking at parts of unmentionable body parts so what's a little odor? So I continued and sometime in the late fall, I no longer smelled. I figured it was because it was cold and I wasn't really sweating. So now the real test has come this summer. I admit that I have not even worn deodorant on some days and I'm sweating. No smell. So what does all this mean? There are the nay sayers who would swear on a bible that antiperspirant doesn't cause cancer and I would agree. That applying the aluminum chlorhydrate to your armpits to prevent sweating doesn't cause Alzheimer's or contaminates the lymph nodes. What I believe is that we need to sweat and that sweating allows toxins out of our bodies and that these toxins accumulating is something to seriously consider. I find it very interesting that my effected armpit smelled whereas the other armpit didn't after some time, that I really smelled with the radiation and now I do not. So, go throw away your antiperspirant and give the old deodorant a try. I use Tom's of Maine and Burt's Bee Spray. Both work very well if you haven't gotten beyond the stinky point. Aahh. Man I'm sweaty.
Monday, May 19, 2008
Do you know about Parabens?
Parabens are a group of compounds widely used as anti-microbial preservatives in food, pharmaceuticals and cosmetics products, including underarm deodorants. Parabens are absorbed through intact skin and from the gastrointestinal tract and blood. Measurable concentrations of six different parabens have been identified in biopsy samples from breast tumors. The particular parabens were found in relative concentrations that closely parallel their use in the synthesis of cosmetic products. Parabens have also been found in almost all urine samples examined from a demographically diverse sample of U.S. adults.
Parabens have been shown to be weak estrogen mimickers, binding to the cellular estrogen receptor (ER). They also increase the expression of genes that are usually regulated by estradiol and cause human breast tumor cells (MCF-7 cells) to grow and proliferate in vitro.
See below for a table of cosmetic chemicals, including parabens, linked to increased breast cancer risk.
PS - this is from the site, www.breastcancerfund.org. And I told my doc this. I didn't get it from some organic weed site. This is legit.
The doctor and the nurse did not know about this. I mentioned to them the lotion they are prescribing to radiation patients, Aveeno. First I said remember when you told me not to put any alcohol on the radiated area. Have you looked at the ingredients for Aveeno? No, they said. Who made the decision to apply Aveeno? We don't know, they said. There are two forms of alcohol in Aveeno and also basically vasaline which is also on the breast cancer fund list as a carcinogenic. Do not put vasaline on your baby's ass. Confession time and I confessed to my s'sters there that I never applied Aveeno to my breast but only pure aloe vera gel and jojoba oil. And they wondered how my breast healed so quickly. Regarding that healing time, I added an extra zinc supplement for a short time ( too long can raise you cholesterol) and I truly believe the mineral content of the ocean helped. Okay, I'm digressing.
Parabens have been in everything. I found them in an older bottle of shampoo and rinse the other day. And it was like...oh no... get them out of here!!!! Invasion of the body snatchers. Don't fall asleep, parabens might get applied. They are in your make-up, your lipstick, your hair products, lotions, creams, deoderants. You name it. So I told them this and then they looked at my effected breast, that I had scratched because of dry skin, and offered me, you guessed it another cream or lotion. No thanks...
So then the day before my trip to the doctor, I recorded a 30 minute thingie for Live Strong Day, part of the Lance Armstrong Foundation. They offered me water in a bottle that had a strip of paper wrapped around it promoting the PVH Cancer Research and Treatment Center. I refused and I think they thought I was insane. When I told them that I didn't know where that bottle came from nor where it has sat, in this warehouse or on truck, heated up, they looked at me again like I'm nuts. I said haven't you heard about the issue of the chemicals in plastic leaching into the water if the bottle has been exposed to heat? No. Okay. Lance Armstrong was engaged to Sheryl Crow who had breast cancer who brought this issue up on Oprah. This has been in the media. I don't even watch Oprah but I know about this.
Don't the people who are treating us the cancer patient and survivor read anything? Do they all have tunnel vision? Can they think out of their little chemical box? As I have said in the past, you need to be your own advocate and if can't do it, find someone who can. So just to mess with them and for them to think I was really was crazy, I said I drink my water out of a glass dairy bottle I carry around or an old army canteen. The look that I got ....priceless. Actually I have a stainless steel water bottle and drink from a glass pitcher that I let sit out to evaporate the chorine, at home.
Now what does this all mean to you. Number one. You are your best advocate. Educate your self and trust your gut. The doctor is not necessarily smarter than you. Number two. Go now and look at all the products you put in your hair or on your skin and if there is any paraben, throw it away. No, no...not later....NOW!!!!!
Thursday, May 8, 2008
The Colon Cocktail
Tuesday, May 6, 2008
My original rambling emails in my cancer journey
Hello Friends and Family. Some of you may know and some of you don't know that I have been diagnosed with invasive ductal carcinoma, breast cancer on Friday, May 4th. I apologize if you are just finding this out. I have been asked by many to let them know ...now what? Please tell others if you wish as I do not have everyone's email. Word is getting out as someone shouted to me on the bike trail the other day, "I heard you have cancer". I met with the surgeon yesterday. It went well and I feel like we're making some progress instead of being stuck at the train station. He was very nice and does check the ego at the door. He patiently gave us much of his time.
Plan of attack is: Tomorrow, Wednesday, I have a bilateral MRI of my breasts to get a better picture of what is going on with the tumor, what is going on in the rest of that breast and potentially what is going on in the other one, ie., any pre-cancerous conditions not being picked up by the mammogram. This could affect my surgical decision. I am scheduled for a lumpectomy with sentinel node section and biopsy with potential auxillary node section and biopsy for next Tuesday, May 22nd. If I elect to do this then I will have to have radiation for five weeks, every day. I will be in the hospital for one day barring any complications. Post surgical treatments are not etched in stone yet without knowing the node involvement. The tumor is growing on estrogen and progesterone. So I hope I have been starving it by not going out for sushi! No yams for me. I hate yams. This usually means tamoxiphen for 5 years. That will put me into full blown menopause. I will borrow Barb Wree's fan. I could still have chemo and again won't know until the nodes are out. One test hasn't come back yet revealing the crazed fast growing tumor. I hope to hear about that today. If so then there is a specific treatment for that. The tumor is on a scale of 1 to 3, a 1 on one scale and a two on another so we'll call it a 1 and a half on Stephanie's scale.
Chris asked Dr. Dickinson what would he do for his wife and he responded lumpectomy with radiation. Dr. believes that the tumor is still small, is not attached to the muscle wall and has not grown into a star shape indicative of an army on the move. I want it out of me and when I mentioned breast reconstruction if I elect a mastectomy, the timing was out another 3-4 weeks to coordinate with a plastic surgeon. Again, I'm at the deli counter, number 53 please! I could still have a mastectomy without the plastic surgeon option and go back in later. It is harder to do reconstruction surgery without the initial part of keeping the skin stretched. I can't wait another 3-4 weeks! I have a slightly greater chance of it coming back with a lumpectomy but that is reduced by radiation and post surgical treatments . There is a chance that Dr. will not be able to get a clean margin with a lumpectomy and I would have to go back and then have a mastectomy.
I am a black and white kind of gal. Right and wrong and this is so gray. What a strange place to be in? What a strange decision to make? Oddly enough Dr. says it probably has been growing, starting out as one cell and then doubling in size every 2 to 3 months for about 5 years, contained in a duct, until it was big enough to see. Was that about the time I started drinking beer again?
What do I need from all of you? Hugs, prayers. Support for all the four guys in my life. Chris will just continue to work and will expect me to do the same but inside I know he is worried. Brian and Dan have just been hit with a big reality check as young men. This has got them finally doing the dishes! Devin keeps wondering where I am at all times. This not a death sentence but there is definitely fear and uncertainty. I go forth into battle surrounded by family, friends, a couple of saints and some nuns. God has his hand in this. Peace to all of you. Stephanie
Elvis has left the building and his alias is Mr. C! They FINALLY called my number at the deli line! Hello family and friends. Just wanted to let you all know where I'm at in my new adventure. I had my lumpectomy yesterday at 4:00 PM and was home by 7:00 PM. A lot of time waiting as I was at the hospital at 8:00 AM. I asked for a pastrami sandwich in my IV but had to be satisfied with watching Dan and mimicking him eating pretzels. So it went well and we are hopeful there is no lymph node involvement. Mr. C spent today at Pathology and we are waiting to hear if his distant cousins, Mr and Mrs. Sentinal Nodes are truly clear. I will need to have a
Hello dear friends and family. So where am I on my new adventure? Mr. C is currently residing in a glass jar at PVH Pathology. Went for the post surgical consult this past week. Dr. said while he was in there, he found something else he took out. Asked if I minded. Do I mind? Hell if you find anything remotely related to Mr. C or his long lost cousin from
So then I also had the PET scan this past week and I came out thinking I'm Superman! I have krypton in me! I am invincible! It's a weird feeling when the substance they are injecting into you has a lead container, a lead shield protecting the tech and a lead syringe and then they tell you, you can't hug anyone for an hour as you are glowing. Doesn't radioactive substances cause cancer? In the mean time if you see me fly by or need forest fire put out....I am now Devin's night light. That too came back good as the nodes in my chest, my liver, my lungs, brain and bones appeared to be clean. One added note. Thank God I have cancer because I found out that I have a calcification on a coronary artery that needs evaluating, per the PET scan. Find the good in all the bad. If I hadn't found out I could have dropped dead of a heart attack at 50 now I can live to 100! See you at my party, Alpine Slide,
Friday I went to the oncologist and she diagnosed me with officially stage one breast cancer but I am back at the station waiting for the next train. Because I had the ticket saying you have A plus B plus G with a stopover at J. I get the new test. Oh lucky me. This one is the Oncotype DX, are there any wayward cells going to sit and hide and then play peek a boo later test? If so, then it's chemo for me. So I have plan A, 30 radiation treatments beginning the end of the month and five years of tamoxifen. Or plan B, 4 rounds of chemo in 8 weeks, followed by 30 radiation treatments (6 weeks) and five years of tamoxifen. Oh what a fun summer I have planned! Good thing I didn't choose the mastectomy as Dr. said with the placement of the tumor so high on my chest wall she might have recommended radiation anyway (some women choose mastectomy to avoid radiation). It was close to muscle wall and rib. So I made a good decision there.
So what do I do now? I have to wait and see. June 19 is the date of knowing. Radiation will become a daily appointment either now or later and I will get to take naps. I like naps. If I have to have chemo then I am glad for once in my life I am curvaceous. By the time 8 weeks go by I might look like that supermodel I always wanted to be. I will likely be sick and then recover and then crap I'm sick again but two down and two to go. I'm three and one and then ah...it is finished. I will start out with a
Know this. I feel well. I don't think I look bad. Okay, I’m not pretty in the morning and then a magical transformation happens... But cancer is a weird disease whose treatment may make you look bad. Every night Devin says I don't look sick and he tells me how beautiful I am. I am hopeful I will not have to have chemo but preparing myself if I do. I will persevere. I will conquer this and I will go forth helping others. Chris and I had an interesting discussion today that if he was sick he would just go and hide in his bed. I can't do that. I get my strength from all of you. You encourage me to be positive and fight the good fight. Chris said, You are going to hold court right here in our bedroom aren't you and I said damn right! Thank you for all your support and prayers. Stephanie
Live simply. Love generously.
Care deeply. Speak kindly.
Leave the rest to God.
Hello friends and family. It's been awhile and I have been trying to compile good info to pass on. I'll start with I met with the radiation oncologist (consultation) on Friday, June 8 and found out that she was from 'Joysee" and we did this comedy routine for several minutes asking each other, "You're from Joysee, I'm from Joysee, which exit?" (Rich and Bonnie you'd understand, everyone else think three stooges; you'd have to be from Joysee to understand). Come to find out she is from Mount Holly, New "Joysee" where Chris's sister lives and where we used to live (next town over) when we were first married and Chris worked for his Dad. Ah yes... we reminisced about the pleasant odor of Sunnyside Farms and an ice cream on a hot summer day. I like her.
So then I got the low down on radiation and started reading the fine print. They didn't offer that to me before deciding on a lumpectomy. I must not have had the reading glasses on. I didn't sign up for the no shave arm pit routine. What do you mean six weeks? How much hair can you have in an armpit in six weeks? So I'm trying to figure out if I have armpits with a little hair or more like a monkey. I have one son like a monkey and the other with little hair. They also told me I couldn't go swimming. What no swimming? That's it, I'm going to water world this week (for real this time). Then there were the permanent changes to my body like I will have the breast of a stone statue, firmer that any silicone implant able to stop a locomotive. Guess what I'm doing for my 50th birthday! New ones!
I am actually waiting for one more test to come back and in the mean time got a few more covered. I am the testing queen. I have gone from two papers in my file at my GP to an entire book. The test I am waiting for is the genetic test to see if I inherited a faulty gene which could tell me then why I have breast cancer. Yikes, if I have it then I'm getting a full body makeover, ie., ovaries come out and both breasts off ( I will get the new ones here if this happens, small C cup and pass the pencil test). That would be a surgery in the fall. There will be nothing left but a mini me! I have had a CT scan of my heart (remember the calcification found in the Pet Scan), an echo cardiogram and a nuclear medicine scan thing-a-ma-gigger. The CT scan was another donut thing they slide you in and out but this one had the voice of the train at DIA asking me to hold my breath here and there. "Attention please we are now approaching the terminal". The other two tests show that I have a calcification but still have a working heart in good working order with some plaque on the inside in one spot. It will need to be looked periodically and if I begin to have symptoms, I will need further evaluation. Don't worry if I'm having chest pains I'll call 911 or I could be like my father who had a heart attack on the golf course, finished the tournament and then drove 30 miles home. Thanks Dr. Brad for seeing me this past week! For now, aspirin, lower the low cholesterol even more, diet and exercise. I am an anomaly as I have low numbers for all the cholesterol and triglycerides and no other plaque to speak of in my heart. I'm thinking I inherited something? Was I born with something? Dad?
I seem to spend all my time either at a doctor's office, getting a test, waiting for a result and speaking to the insurance company. Whew no wonder people with cancer get so tired. I do things when I get blood work like ask them, "Do you want me to hold that for you"? They always ask if I'm okay, like I'm going to pass out or something. Hey, I see dead people. They don't seem to understand how my days go at the office. So recently someone asked how I really was. I'm kind of tired of this whole thing and wish it would just go away. I get a little down in the mornings when after a good nights sleep with no bad dreams I still have this issue but then the day takes off and I'm busy and don't have too much time to ponder it. I've been feeling a bit anxious late at night, waking up. But I go back to sleep (the wonders of Valerian root) and get up and it's a whole new day!
Dan has started working for us to help out for when I can't be there. He's a quick study and an asset to helping us out with some technology issues. I keep trying to teach him something and he's already figured it out. He had a second job this week at his chiropractor's office helping out with a relief situation at that office. Dan was never meant to scoop ice cream for a summer job. What a waste. He needs to work in a office. In fact I think he's a better me than me. This is giving me some time to be with him before he leaves for college. By then will I be so sick of him I'll be happy he is leaving! Somehow I doubt it. He was always an extension of my body. He is a good son.
Got the test back from the Oncotype DX, you know the one that sounds like a sports car. And I fell into ....the gray zone. Oh let's call it the Neutral Zone as I am talking stardates here. It means I was seriously considering chemo last Friday but then low and behold I got my Calcium CT scan back right after which indicated I probably need to see a cardiologist. Timing was interesting. Is someone trying to tell me something? My doc said no chemo until the ticker got looked at. He said he couldn't believe I am dealing with this at the same time. I told him I'd try diabetes next. So I had me some "chemo edumacation" this week just in case. Chemo is tough on the body with short term and potential long term effects. This week of the heart thing has given me more time to evaluate the good, bad and the ugly about chemo. My dad had chemo for his cancer and it came back and he died. He never recovered from the chemo - his immune system was so compromised that I don't think he had a chance. So I'm looking outside of the box perhaps on this one. To my knowledge I could gain up to 4% better outcome for a ten year distant re-occurrance with chemo. Most folks say they wouldn't do it for so little but if it was 10%, maybe. I need to make this decision by Monday morning. If I don't do chemo and let me tell you I'm not jumping up and down saying pick me pick me, I will do a clinical trial of a shot that shuts down the ovaries, take tamoxifen for a while and then switch to aromatase inhibitor. The plan is to starve any other existing cancer cells that could possibly be floating around in my bloodstream of all estrogen and progesterone. I think it's brilliant and it's getting some accolades in Europe and
Chem-o. CCHHEEMMOO. Appointment comes and I want to go home. (Sing along here. You know the tune.)
Chemo, she say hey, she say hey, she say hey.
Appointment comes and I want to go home.
Come Medgyesy tally me da' mycin.
Appointment comes and I want to go home.
Come Medgyesy tally me da'mycin.
Appointment comes and I want to go home.
Top ten best reasons to have no hair
10 Save money on shampoo, electricity for the hairdryer
9 Ability to make it to work on time
8 No bad hair days
7 Pool caps fit better
6 Cooler in the summer
5 Hate your current 'doo - just start over
4 Blame someone else for the clogged drain
3 Easy Halloween costume - be Jean Luc Picard
2 Top of the head can be used for an emergency reflective device
1 No hair in the breakfast muffins
All for now. Pray I make the right decision and be guided in this one. I let you know next week of the big decision. Love, Stephanie
Jeez louise where have I been? And so in case you didn't know by now, I chose no chemo. After careful and prayerful consideration, I could not justify the short term and potential long term effects of such a harsh treatment to reduce the chance of a distant re-occurrance within 10 years by only 3 %. If they could give me 13%, I would have taken it. So per the result of this test I took, remember the one that sounding like a race car - Oncotype DX, I needed something besides just tamoxifen. And thus I went forth to try a clinical trial. Which was by the roll of the dice, tamoxifen alone, tamoxifen with ovarian supression, aromatase inhibitor with ovarian suppression. But alas I couldn't do it "my way", sing along 'ole blue eyes, as I was not willing to be guinea pig. But I will make notes for anyone who is interested in what I have done and the long term results. And so de plan is: I started radiation on July 11th. I had my first shot for ovarian suppression on July 20. I start tamoxifen on August 8th. I'm shutting down the ovaries, turning them off. And so I will have hot flashes or what I like to call my dewy heated moments. I don't like the words cancer nor oncologist either so I'm working on some new words for these too. Here's the funny part. If I had had chemo, I would have had hot flashes ( chemo kills the ovaries). I take tamoxifen and I have hot flashes. A shot to turn off the ovaries and I have hot flashes. Aromatase inhibitor, hot flashes. You get it...I'm going to have hot flashes. So far a few days into it, I have had some dewy moments. Hot flashes could help with global warming. No heat in the winter, just your own. Dr. M said per the clinical trials they are thinking (all results are not in yet) that stage one breast cancer ( no node involvement) using ovarian suppression plus tamoxifen "is as good as chemo" for reducing a distant re-occurrence. I think I am on the right track. My compromise with Dr. M was to try ovarian suppression first with the shot and if I tolerated menopause well, I could have the ovaries removed later. After two years I will go on an aromatase inhibitor and continue that for three more years.
So Monday through Friday, at 3:30PM, I go to radiation. I bear my breasts to a machine that looks like something out of Starwars. It is not a donut type machine. When I saw it for the first time I asked where Padme was. Radiation set up went something like this. Here, lie on this partly naked, while nurses are on the floor molding a foam insulation substance they got at Home Depot that hardens to take the form of my back. They said they needed a table. I promoted the nice folding ones at Sams. Told them my youngest uses his to sell lemonade on the corner. One nurse stands up and asks if my son holds a no uranium mining sign as he is doing this. It's a small world! The set up machine was another donut thing. It makes me want donuts. I like glazed ones the best. No filling. Then they tatooed me. I asked for little flowers but they gave me boring black dots that hurt when they did it. I will never go through the pain of a tatoo. Let's step on a bee over and over again. And so begins the no shave armpit routine. Maybe we can make it into a fundraiser - Mr. Boda, Mr. Lopez, Mr. Smailes? I am finished with the pool for the summer which will give me more opportunity, if I'm not too tired, to work with the horses. I can sit in their trough to cool off just not in the chlorinated pool. I so wanted to break the rules and go swimming this past weekend. I kept thinking about swimmers in the
I took Devin with me to get the ovarian suppression shot last week. I told the nurse Devin would come in with me for the shot. She responded, it's a really big shot. So I asked Devin if he wanted to see Mommy get a really big shot and he said yes. Remember this is a seven year old who has seen more than some adults have seen and refers to the crematory as the fiery furnace. So she brought in a shot of lidocaine and gave me that in my stomach all the while talking about how big the other shot is. When she brought in the big shot, Devin responded, (think Crocodile Dundee) "That's not a big shot, a big shot is this big and we gave it to my pony. We drew a triangle in marker on his neck". Nurse asks, "Did you give the pony lidocaine first"? "No we just stabbed him". Shots are with a large gauge needle much like the pony shot and the ovarian suppression drug is a cylinder that gets shot in with a spring that then dissolves over the course of a month.
All for now. I am moving along and gaining much information to pass on to the next person who might have to go through this. I'm feeling strong but I have developed an unreasonable wariness of plastic. There is discussion out there that plastic water bottles left in cars and heated up might be contributing to cancer. If you think about it, cancer is on the rise and how many plastic water bottles do we drink from. Well I've gone one step further. How can I be assured that the plastic bottles are not sitting in a truck or warehouse and heating up. So I now drink my water out of a glass dairy bottle. I will start a new fad. Who wants nalgene when you can have a dairy bottle ? Love and peace to all of you. Stephanie
Barbecue anyone? Pass the sauce. Pork rinds? Pig picking (North Caroline term)? Radiation has been the worse part of this whole thing. My skin is a mess. It itches, it's rashy, it's blistering, it's oozing, it's peeling dry, peeling wet. I stand in front of the mirror in the morning with my assortment of creams. Place this one here, this one there. Oh hell, mix them all together and slather it on! Just close my eyes and then it's not so bad. The only good thing about radiation was no hair growth in that armpit. Remember how worried I was about hairy pits. Shhh... one day, like girls smoking in the lavatory, all of us women in radiation admitted we had shaved our armpits before our skin got really bad. Don't tell the nurses.
We went to
We arrived in
Once in NC, it was hotter than hell and I always ask myself, how did I ever live here and wear pantyhose? Sweat made my wounds ickier and itchier. I did get to the beach on the day after we arrived and placed my chair in the sand near where the waves could wash over my legs. And the waves came and then got my shirt wet. And then I thought. I grew up on the beach. How can I stand to stay here? What will happen? My skin will fall off and it will hurt. Hell, it already is falling off and it hurts. So I stood up took a breath and ran into the surf, dove into the first wave and came up on the other side. I swam quickly to get beyond the break. Aaaaaa...this is nice. It's cool. It doesn't hurt. There is no sand as I'm out in water way over my head. I still worry about the sharks but it's not 4 PM. I spent an hour or so doing this. I took my shirt off and washed it out and put it back on inside out so the seams wouldn't bother me. Don't worry, no one's out where I am. Time to come back in. That was the hardest part, to catch a wave but not ride it in but just get behind to allow it to pull me in farther to the shore. Catch another. Oops, misjudged! Dive back under. Wait, wait get behind another and now run. My skin began to heal as I went into this mineral based treatment on several more days. No boogie boarding this time. Sand ground in would huuurrrrrttt!
Oh God, I had to come back for one more week of treatment. Dan got to
Where do I go from here? I have a team of doctors now that I will continue to see through out the year. I will continue to get my monthly shots for ovarian suppression and take tamoxifen for two years and then another drug for three more. I could sit and wonder if this will come back or go and live my life and say I'm cured. I choose the latter. There is the five year milestone that a cancer survivor works towards and I will mark off the months and the years. I got it early. There are things that I need to change in my life and cancer was a two by four over the head. What I don't get is how heated dewy moments happen. If I don't drink alcohol, hot drinks, hot or spicy food, sweep the garage on a 100 degree day then it's not so bad. But I keep wondering if an atomic bomb will drop one day.
I will miss the daily smiles of the ladies at radiation. It became such a part of my routine and they all became my friends. I saw them 32 times while receiving my 6000 rads. Radiation reminded me of play dates with moms or a coffee chat. It is mostly women there and mostly women patients. So we chatted about the kids, exchanged recipes. We laughed alot. I would joke about nipples falling off and would always come out of the long dark radiation hallway assuming the Home Alone stance of McCauley Caulkin saying, "Yes". There was always donuts, cookies, ice cream bars and chocolate zucchini cake. I gained weight in radiation and began to tell them I came for the cookies and that radiation was an added perk.
By the way, I did not have the cancer genes. I think I'm on the cutting edge of new treatments for women with breast cancer (ovarian suppression). Saw it on a couple of other research university sites saying early results from clinical trials show it is as "good as chemo". Now if we could work on other cancers in the same fashion. Do we have to always poison them and ourselves? How about preventing them in the first place? How about changing our lives? Stress is a killer and if I could put this on one thing I would say stress is the culprit. Did stress effect my immune system to be able to get rid of a stray cell? Hmmmm.
I am constantly analyzing things like what is in a bag of microwaved popcorn? What is fractionated palm oil? Cousin to hydrogenated? And after reading about lung disease from breathing in the aroma of the popcorn bag, I'm back to the old air popped corn with real butter. You can find these at garage sales. How about Jiffy Pop? All natural butter has got to be better than the messed up palm oil. Why do we have plastic everywhere? I just saw that there are aluminum water bottles. How about we bring back army canteens?
I am a bit tired with all the activity of the last month and so some of you have asked if I need a meal or two. You know this could linger into Thanksgiving.
So then you are wondering what if I don't continue to write you to in these emails. Now when I call you for a question or to talk, you ask when I'm sending out a new email. See you could start a new thing. Communication in long emails rambling on about whatever instead of this code people speak in. I think those are called blogs? So I say good bye for now. I will continue to be in touch. Just not these rambling words I type out. The journey has been long but somehow short. I go forth to help others. In some ways, this has been a journey of not just experiencing but of somehow looking at it from the outside. I have tried not to focus on what it was doing to me. It had a surreal quality all its own. I have said it was an inconvenience and it was in the sense I didn't have the summer I had planned. But there are no guarantees in life and no convenient times to plan to have something like this. However I always thought September would have been a better time to have this. This was my journey and in my crazed way of handling such stress, I made it funny and light. I figure it is where I failed at preventing cancer. Laughter had taken a sabbatical. I did sit down the other day and said to myself !@#$%^& I had cancer. Thank you for all your prayers and support. And as Randy Quaid said in the last moments of the film, Independence Day, "Hello boys, I'm back"! Peace to all of you. With much love. Stephanie
In honor of breast cancer awareness month, I thought I would come out and speak to you about breast cancer... go figure. Number one. Get a mammogram. Don't be late. No excuses. Remember to to self exam monthly. Best time is right after that monthly thing if you still have that monthly thing. Otherwise the day you change your contacts is probably a good day to self exam or the ninth of the month (buddy check 9) Guys, you can help here but remember it's SERIOUS and not foreplay. Ladies remember to exam all the way up to your collar bone. I bet you didn't know your breast went all the way up to practically your chin. I know it's hard to remember all your lumps and bumps like some kind of Rand McNally road map, but try and remember where they are. Feel for a pea but also a thickening under the skin. When I found my lump, I kept saying I was going to go on tour with it so women could feel what a tumor feels like. Fortunately it came out and there was no time for the tour. The best way to describe it was like a small hard lump of gum under the table. Not on the surface of the skin but you had to push on it to feel it. So go find a picnic table at the park and feel for gum. Look for weird changes in the skin texture, swellings. And if there is anything coming out of your nipple and you don't have a baby attached to it, please see a doctor immediately.
Digital mammography. It will be available in Fort Collins sometime next year but in the mean time Northern Colorado Medical Center in Greeley and McKee in Loveland have it and you can self refer, just need someone to send the results to. If this is for your annual mammogram, no problem. If you are like me and need more frequent ones you need special permission from insurance or pay for it yourself. Cost around $400. If you are in another state, seek it out. Digital mammagraphy is now recommended for pre and peri menopausal women and women with dense breasts. Remember, you are in control of your health and you are not at the mercy of a doctor and what might be available in their office.
If you have a result that needs further examination, ask your doctor to make that appointment for you ...the soonest one. If you call, you may get a scheduled appointment (get in line) versus a triaged one. Doctors and their staff can get quicker appointments. Get creative. There are other hospitals and other diagnostic places to do things like ultra sounds, biopsies, etc... For instance, here in
Inflammation. There is some connection between cancer and inflammation. So try not to be inflamed.... And there is some connection with inflammation and being out of balance with omega 3 and omega 6 oils. And consider all the processed foods you eat and the fact they all contain soybean oil which is an omega 6 fatty acid. Go ahead, go to the store and try to find something processed that doesn't contain soybean oil. Make it into a field trip! Cottonseed, palm and other polyunsaturated oils all are in the same category. Olive and canola are the monosaturated oils that are good for you. So STOP eating so much processed junk! Go buy a cookbook. Gather grandma's treasured recipes and make it homemade sometimes. At the same time, balance this with increasing your omega 3 fatty acids with pharmaceutical grade fish oil, walnuts, flaxseed, fatty fish like salmon. Trade tuna for canned pink salmon and make a nice sandwich or spicy under the broiler toasted with a bit of pepper jack cheese and old bay seasoning. We call it the Dan San. Eat a handful of walnuts each day and pop one or two of those huge fish oil pills. Use a water bottle to make it go down. I know, I know your throat is only the size of a number two pencil. Get a coffee grinder and grind some flaxseed and keep in fridge. Now make toast, spread a bit of honey and then sprinkle flaxseed on top. You can add some wheat germ as well. Yummy. That extra zucchini you're looking to find a home for, make the bread and add walnuts and flaxseed. Stop buying peanut butter with hydrogenated soybean oil that you feed to the kids. Read the label! Kraft mac and cheese and the orange powdered stuff can't be good for you! Have we lost the fine art of making homemade mac and cheese? Why have Asian woman historically have low rates of breast cancer? They eat lots of fish and soy but not processed foods with soybean oil. Mrs. Lim told me this. There is an increase in breast cancer of late with Asian woman as they adopt the western diet and life style. I think we should really pay attention to this. We will all be better off if we just change our diets. I ate lots of fish as a child. Now I eat more shrimp which doesn't have the omega 3 fatty acids. We'd rather have a steak and shrimp than the lowly fish. Make Friday fish day again. Instead of eat mo' chikin, eat mo' fish!
Hormones. They do not belong in the animal flesh we consume. And they are. We have enough hormones already. Ever wonder why boys and girls are maturing earlier? Extra hormones? Little girls are getting their period at 9 or 10? When I was growing up 13 was the magic number. And by increasing the number of years with estrogen you are increasing your risk of breast cancer. Estrogen and testosterone are fed to cattle, pork, chicken to "better the product". In a womans' body, testosterone is converted to estrogen by way of a protein called aromatase. Is this the same for the testosterone we consume? So here is something to ponder, if you are ingesting more than your fair share of estrogen in animal products and ingesting more that your fair share of testosterone that could be converted to estrogen do you have way too much estrogen in you? Is it a coincidence that there is such a rise in estrogen positive breast tumors? Now there is a study out that says alcohol increases your risk of cancer. Well the old liver filters out estrogen and if the old liver is feeling pretty old with alcohol and couple that with ,you guessed it, too much estrogen, you may have set up a great incubator for breast cancer.
Lose weight, eat a low fat diet and exercise. This is the hardest part! You know this helps with heart disease as well. If you eat a low fat diet, you are usually limiting the amount of animal product that could contain hormones and thus increase your chance of breast cancer. Do you see how this all goes back to the hormones. Let me hit you with a two by four. NO HORMONES!!!!
Pay attention to your doctor when he or she says at your annual appointment, do you self exam, do you know what you are looking for, do you know how to do it? We have all gotten lazy and like how we are so attentive to the flight attendant who stands up and shows us all how to buckle a seat belt (we're reading a book or flipping through the on flight movie pre-views) we say yeah, yeah, yeah, I do that, when you know full well you do not.
There, this email should get you all through until I send out the Christmas letter. One more thought. Get a no hormone, antibiotic free turkey this year. Last year I got one from Vitamin Cottage instead of the Butterball. First my brother and I marveled for 10 minutes over the color of the bird's liver and other organ meat. Then when we went to boil the gimblets, there was NO KILLER FOAM. I am never buying a butter ball again. I basted it myself with a mixture of olive oil and real butter and it was to die for. Actually the butterball might be the one to die for.