Monday, October 5, 2015

To summarize...

I haven't had time to blog recently and there isn't much new going on in terms of my health. I thought this would be a good time to summarize where I am and what I'm doing... Or not doing, as the case may be.
As far as I know I am cancer free. I would like to point out here that this fact is not a guarantee of health. Do you know of someone who wasn't feeling well, went to their doctor for help, and learned they had Stage 4 cancer for which there wasn't much hope of successful treatment? I suspect you all do.
The reason for this is; and if you take nothing else from this blog, please take this; your doctor is not the quardian of your health. Your doctor is not checking to see that you are healthy- even at your yearly check-ups. Your doctor only learned to treat symptoms in medical school. That is the business doctors are in- treating the symptoms of disease. When you take an ache or pain to your doctor, he/she runs tests to determine what pharmaceutical might best treat your symptom; rarely does she try to determine what might have caused the symptom or disease.
How many times has your doctor asked you what you eat every day? How often you exercise? How much alcohol you drink? Caffeine intake? Artificial sweeteners you consume? If you are regularly exposed to heavy metals from amalgam fillings?
Has your doctor ever told you that a diet high in fresh fruits and vegetables, low in animal products, alcohol, sugar, grains, processed and synthetic foods; coupled with weight- bearing and aerobic exercise, can keep you healthy and pain- free? Has your doctor told you this diet can prevent, or as in my case even reverse, osteoporosis? Has he told you this diet will normalize your weight and blood sugar, will keep your heart healthy, prevent cancer, arthritis, and diabetes, and enable you to lead a long and healthy life? I suspect not.
I probably wouldn't have made the changes I have made this year if I hadn't been diagnosed with cancer. For this reason, I now see my cancer diagnosis as a blessing. I honestly never believed I would ever again weigh less than 130 pounds. For the last 3 months my weight has been stable at 120-125 pounds. I struggled to maintain that weight in my 20's. My blood sugar swings have decreased, my strength and endurance has greatly increased, and my mental and emotional outlook on life has never been more positive.
I urge you to pay attention to your body. Aches and pains are your body's way of alerting you to problems and imbalances. The older your body is the more toxins it has accumulated. There are many safe ways to de-tox the organ systems of your body. It is astounding how long our bodies can survive working under huge toxic overload and system malfunction. If you have ever had a loved one in hospice care you may have witnessed just how long a body can cling to life without food or even water. Having witnessed that with both of my parents I can testify to that.
Be aware of the messages you give yourself. Listen to your internal dialogue. All physical disease has emotional components. Your thoughts become your dreams and your dreams become your reality. Expect health.
I believe I developed breast cancer because I neglected to care for my body, mind, and spirit. I ignored the mercury exposure I knew was detrimental to my health. I drank too much alcohol too often and consumed too much sugar. I did not love myself enough to deal with emotional issues affecting my happiness and contentment. I didn't exercise or meditate regularly, although I was aware of the benefits of both. I didn't appreciate the fragility of health and ignored many warning signs that mine was deteriorating.
I now know how to be healthy. My task is to continue to be healthy.
I hope this message helps you to take charge of your health and your life. Be well. Be happy.
Blessings to you all.

Tuesday, August 25, 2015

Detours

I saw the doctor at the Atlanta clinic 2 weeks ago today. I haven't posted because I have been busy, out of town a lot, and have been unsure about how I feel about the visit.
The doctor and I had a shaky start. I didn't come away from the appointment feeling like I had been heard. We have communicated by e-mail a few times since then, and I feel better about her, but still am not completely convinced she can provide what I need.
She ran quite a few lab tests which I haven't heard the results of. She also helped me figure out a way to have a genetic test for a methylation problem I suspect I may have. There is a website called 23&Me that will send you a kit for a DNA test to discover your heritage, and will also tell you if you are likely to be predisposed to some inherited conditions. They will only go so far with medical information, but another group will take their raw data and give you more specific medical information, including whether or not you have 1 gene with the methylation mutation (as I suspect I may have) or 2 genes with the mutation. I don't have the symptoms of the 2 gene (homozygous) problem. These include a very low tolerance to alcohol and anesthesia, painkillers, etc. I actually seem to have a high tolerance for those. Interestingly the symptoms of the lesser problem (heterozygous or one mutated gene) are the same as the symptoms of yeast overgrowth. These include but aren't limited to; chronic fatigue, fuzzy thinking, poor metabolism, chronic constipation or diarrhea, sensitivities to various foods like gluten, craving sugar or breads, etc. This isn't the complete list- I am writing this from memory. There is a website you can find by googling methylation problem folic acid. That is what one's body can't use properly if this defect is present- folic acid. I won't go into the biochemistry of folic acid and why it is so important but look it up if you are so inclined. Folic acid is a very important nutrient and our bodies must be able to methylate it to use it. Another interesting thing for me is this methylation problem is greatly exacerbated by yeast overgrowth! Also by exposure to heavy metals like Mercury! Mercury exposure also can encourage or facilitate the overgrowth of yeast! It is weird to keep coming across these looping symptoms. It makes me feel confident I am on the right track.
I am waiting to hear back from the DNA test but I believe it could take a few weeks. By the way, the cost for the DNA test is $99.00. The kit they send requires you to send in a sample of your saliva. Easy to follow directions.
The doctor in Atlanta did an energy scan based on Chinese medicine. It measured the chi or energy flow to each organ. Not surprisingly it showed a deficiency in the flow of energy to my liver, my large intestine, as well as my spleen and lungs. There were lots of other problems noted but I don't understand a lot of it yet. I took it to my acupuncturist and she is treating me.
One other big change came from my visit to Atlanta. The doctor gave me some information on adopting a ketogenic diet to starve the yeast as well as any lingering cancer cells. You probably won't remember, but in an earlier post I mentioned that my chiropractor had suggested the same thing to me back in the Spring after I was first diagnosed. After some careful study I have decided to give it a try now. I am convinced that resolving the yeast overgrowth is essential to my healing and, in spite of everything I have been doing, there is strong evidence that the yeast is still thriving.
Again, for the sake of brevity (I hear you laughing), I won't go deeply into the ketogenic diet, but will summarize for you. On this diet your body burns healthy fats and protein for energy rather than carbohydrates. Yeast and cancer cells are both obligate glucose users. This means they can only survive on sugars. Our normal cells can use fats and protein for energy but will only do so when carbohydrates (sugars) are not present. To determine if fats and proteins are being used for energy, one must check the urine for the presence of ketones. That is where the name comes from. After carefully exploring the diet, I realized it is in fact not much different than what I was doing. I simply needed to cut out most of the fruit I was eating and add some more protein ( for me eggs and a little organic meat and raw milk cheese) and some healthy fat in the form of avocados, flax seed oil, coconut oil and butter, olive oil, etc. I have to say I am also eating a bit more cooked food. Stir fries, roasted vegetables, and eggs never tasted so good!
One of the most interesting things about this diet is it tends to normalize one's weight. One will either gain or lose weight as needed.
I had another filling replaced last week. I only have one left to go! Then I need to decide about replacing a crown that has some Mercury under it, and a bridge that is composed of mostly nickel, which is on the list of materials I should avoid. Again, can you hear the sound of money- ch-Ching ch-Ching? (Not sure why my iPad wanted to capitalize the chings.)
I am horrified to see typos in earlier posts. Sorry! That is really not like me at all, perfectionist that I am. I suspect at least some of them are the fault of predictive text. I try to proof as I go because I once completely lost a long post trying to go back and change a mistake. I am unfortunately still on the learning curve for this format. Please bear with me.
Let me say here, before I close, that I would be happy for any of you to share this blog with anyone who might benefit from the information presented. I do not claim to be a physician. I do not recommend that anyone follow any certain protocols for treating disease. This is just what I titled this blog and nothing more; my journey through breast cancer my way.
Thank you and God bless you one and all.

Tuesday, August 11, 2015

Curiouser and Curiouser

This is like a game of Clue (for those of you old enough to remember Clue). Or like a game of Spider Solitaire, which I am semi-addicted to. I find one avenue to explore, and I read and discover many clues about it; then suddenly I am led on a detour which I later realize is actually the main road after all. Warning- if you are squeamish and/or don't like to talk about poop, you should just skip the next few paragraphs, and hopefully I will have something of a conclusion at the end that will be less TMI.
As I indicated in an earlier post, the key to the program I studied at the Living Foods Institute (LFI) is colon cleansing. Very few adults are walking around with a clean colon. I am sure some of you are saying to yourselves, "I go every day just like clockwork." You may indeed be eliminating each day. What they told us at LFI is you will know your colon is healthy when you have movements that are 10-12 inches long, well-formed, without a bad smell. The clincher is you should experience this 2-3 times a day after each meal! I don't know about anyone else (as this has never been a common topic of conversation for me- have you ever heard the saying, "You know you are old when talking about your bowel movements is part of your everyday conversation."?), but I personally have rarely experienced this even once in a day, much less multiple times. That said, here I am 4-5 months later finally figuring out what has been going on in my digestion/elimination systems, or not going on, as the case may be, for most of my life.
I grew up on the standard American diet of the 50's and 60's. I ate sugar for breakfast; sweetened cereal with chocolate milk, powdered sugar doughnuts, pop tarts, Hawaian punch, pancakes with syrup; nothing with any real fiber or nutritional value. For lunch I ate white flour biscuits made with Crisco or brown 'n serve rolls with cane syrup, lots of syrupy tea, and whatever meat my mother prepared that day. This would be fried or baked chicken, country fried steak, pot roast,  fried pork tenderloin, or fried salmon croquettes. We always had meat, biscuits or rolls with syrup or jelly,and all of the sweet tea we wanted. If I ate at least 3 peas (I am not making this up), I could have dessert. That would be store bought cookies or homemade pound cake or something else along those lines. Until I was in college I never remember seeing broccoli or cauliflower or romaine lettuce. We had peas of all kinds (which my mother picked, we shelled, and she blanched and froze), baked potatoes, corn, green bean  casserole made with canned French style green beans, or canned English peas. We may have had squash, since I didn't eat it I really don't remember. We had fresh tomatoes my Daddy grew, but I didn't eat those either. In fact the list of foods I would eat was very short. I ate meat and bread, fried potatoes, corn and the occasional pea. I also drank lots of sweet tea with lunch and dinner ( called dinner and supper back then), lots of jelly and biscuits, and the occasional obj on white bread with the ends cut off of the bread. I didn't like milk unless it was chocolate, nothing green except iceberg lettuce, no fruit except canned fruit cocktail in heavy syrup or canned pears in light syrup, no dressings of any kind- not salad, mayo, or ketchup. I did not eat cheese or tomatoes in any form. If we had spaghetti I ate plain white noodles. If we had hamburgers I ate them plain on a white bun. Some of you may find this hard to believe but I assure you it was true. I won't go into the details of my dysfunctional family in this post, but I will say I had very little power as a child. Eating was the one area I did have some control over and, although it was a constant source of conflict between my parents and myself, it was the one area where I could have some power. I used this to my advantage. My diet became the battle I could most often win. That said, I have to say I remember the smell of  cheese making me nauseous, and to this day, the texture and taste of cold cheese is repulsive to me. I also remember feeling like I would gag if I chewed those 3 peas, so I would just wash them down with my sweet tea.
So I am sure you see the picture emerging. I ate very little fiber and very little food with any life left in it. I ate mostly refined carbohydrates, bad fats, lots of meat and sugar. Is it any wonder I was chronically constipated as a child? I also had insomnia as far back as I can remember. Probably had something to do with 4 or 5 glasses of sweet tea I had with supper each day.
If this wasn't bad enough I also was prone to colds and bronchitis so I would have a shot of antibiotics on a regular basis. In my youth this was probably some form of penicillin since that was about all we had, but as I grew up and started having what would become chronic urinary tract infections (UTI's), this evolved with modern medicine into broad spectrum antibiotics. This treatment led to vaginal yeast infections and set me up for where I found myself this year.
I had a UTI last winter and after the prescribed antibiotic found myself with a painful case of thrush- a symptom of a more widespread Candida (yeast) colonization. The physician gave me Diflucan after  the antibiotic to fight the yeast. I becam sick after these treatments with what I thought was the flu, but now I believe I was actually sick from toxins released by the dying yeast.
Here comes the gross part if you want to skip this paragraph. As I have been giving myself enemas these last 6 months I have noticed my stool contains a lot of mucus; in fact sometimes that is all there is. This has not gone away and has led me to continue with the enemas even though I do now experience bowel movements when I stop. We were taught to implant wheat grass juice  at LFI after our enemas - this is just what it sounds like. You put the wheat grass in a large syring, attach some tubing with a nozzle, and put it into your colon. It was recommended we try to retain it for 10-20 minute, sometimes I never passed it. This was ideal because the wheat grass juice is rich in chlorophyll and fights yeast and other pathogens where they live and thrive. Often when I would pass it later it would come out in the mucous. It is bright green so you can always tell when it is expelled..  It was all very strange and fascinating to me. Yes, I am really fascinated by mt bodily functions. Probably has something to do with my life without television.
At a pot luck with some of my LFI friends recently I talked with one of them about something I had read in Anne Wigmore's book, The Hippocrates Diet. Her book formed the basis for the program at LFI. This suggestion was that one could implant Rejuvelac in the colon and directly inoculate beneficial bacteria. Rejuvelac is a fermented drink we were taught to make from sprouted soft wheat or cabbage. It is similar to Kombucha which you may be familiar with. I rarely make Rejuvelac because I don't find the taste palatable, but I began making it again to try this inoculation plan. The results have been staggering. I will spare you all of the truly gross details but it is essential to say that my colon was definitely colonized with Candida. I thought I had parasites but have come to realize this is just the pathogenic form of the yeast. Long ropes of mucus that I believe is the Candida that has made my colon severely compromised. The symptoms I didn't recognize but now know to be those of  Candida overgrowth are: stomach aches accompanied by gas, bloating, and/or indigestion or acid reflux, craving sweets and carbohydrates, poorly formed stools irregularly passed and often of sticky consistency, chronic UTI's, painful and frequent urination, fatigue, depression, reduced sex drive, fuzzy thinking, poor digestion of food in general, and the one I don't seem to have which is sensitivities to gluten and/ or other foods.
I also learned that exposure to heavy metals (in my case, Mercury) exacerbates yeast overgrowth biochemically. I won't go into the chemical processes but will be glad to share my sources with anyone interested.
Today I am consulting with a doctor at the Atlanta Center for Wholistic and Integrative Health. I am excited to talk with an MD who is actually concerned with what has caused my illness rather than just treating the symptoms of it. I am hoping to find some guidance and recommendations as I continue to detox and heal my body.
Thank you to all who have sent cards and prayers. Your support has been invaluable to me. Blessings to you all.

Monday, August 3, 2015

More Western Drama and Angst

Microscopic report of the lymph node came back with a few clusters of malignant cells in the subscapular sinus. Right- nothing is ever in English. After lots of talk with doctors and chasing my tail to get my hands on the report, their recommendations remain the same; chemo followed by radiation.
After hours of research I have decided not to follow their recommendations. I found evidence that there is no significance in those microscopic cells they found. All of the research papers I found said I am still considered node negative and giving chemo based on those results alone is not justified. Some went so far as to say the stains used to identify the cells should not even be done when the node shows no sign of tumor. Risks from the treatment outweigh the potential for benefit.
I had another amalgam filling replaced less than a week after the lymph node surgery- not one of my better ideas. It put me in a deep depression for a few days where I mostly slept. Then 3 days later I woke up feeling fairly normal. Weird. I definitely need some help detoxing from the mercury after it is all removed. I go back the end of August to have 2 more removed. I will be done unless I decide to have a bridge replaced that apparently has some mercury under it (ch-ching$$$). I will make that decision later.
I feel really good to have finally made the decision not to have radiation and chemo. I continue to find research in support of that given the particular characteristics of my tumor. I have decided to seek out a holistic doctor who will guide me through my continuing path of detoxification and supplementation. I look forward to going to the Integrative Practice I found in Atlanta through a close friend of mine. I will see a M.D. who is also trained in more wholistic medicine. I have a consultation next Tuesday. Wish me luck!
I will also be proactive in watching for any more cancer to develop. I now have the tools to have my body scanned regularly in a safe way.
Thanks again to all my wonderful friends who have texted, prayed, sent cards, etc.  I am truly blessed.

Wednesday, July 22, 2015

After surgery- again

I had the lymph node removed about 12 hours ago and have been asleep since right before that. They got an initial report of no cancer in the lymph node!!!!!!!!! Excellent news. They will now slice the node into many thin sections and look for any stray malignant cells. It may be early next week before I hear from that. I am so relieved!

Tuesday, July 21, 2015

Comments

Someone who read my blog told me they tried to comment and weren't successful at doing so. Being new to this I am slowly figuring out how things work. I think I have been successful in making it possible for anyone to comment now. Please feel free to do so if you would like to.

Middle of the night musings...

I got the lymph node biopsy scheduled for July 22nd (tomorrow). I saw the other doctors after my last post.
The radiation oncologist agreed with the oncologist that I should have chemo since my cancer was triple negative. I finally remembered where I had read that because my type of cancer was "apocrine" in nature, it was different than the regular triple negative type. It was an article I found months ago when I first began my research. It was on the website for Johns Hopkins- a very reputable source. It said apocrine cancers are always triple negative but are less likely to recur or metastasize. Because they are so rare (<2% of breast cancers) no studies to prove this have been done.
I dropped off a copy of the article at the office of the radiation oncologist and took it with me to see my gynecologist. The gynecologist has been my doctor for 20 years and is also my favorite obstetrician. We have been at many births together and have a good relationship. He will often come to the births of my doula clients even when he is not on call. He is the most supportive doctor of natural childbirth in Rome. This is probably because all of his children were born naturally. He was completely unaware of the information I shared with him about apocrine cancer and completely supportive of my decision to forego chemo if the lymph node biopsy is negative.
I feel fortunate to have the relationships I have with my personal doctors and to have their support as I face these many decisions.
My daughter and grandson are here with me and have been a nice distraction as I wait for this test. My sleep has been wonky since I have slept with my grandson the last 3 nights. He has not needed attention in the night but has been restless, and I naturally went back into "mother mode" where I sleep very lightly and wake up whenever he stirs. Yesterday I took a 2 1/2 hour nap with him which further messed me up- hence I am awake now at 3:45 in the morning. After my surgery I will probably sleep around the clock so maybe I can then get back to some normal schedule.
I have been obsessing over these decisions incessantly. I will be so happy when cancer treatment is not at the forefront of my mind. One day I feel confident that I need no further treatment, the next day I envision having chemo and radiation. I just can't wrap my mind around the latter plan. I have always thought chemo and radiation were not logical treatments. They both can cause cancer and both impair the body's immune system. It has never made sense to me to poison the body to treat disease. I am just not sure I can do that. I really feel that if my lymph node is negative there is very little chance the cancer left the breast before being removed. I also think I have many tools now to know if it comes back in either breast before it would even be detectable by mammogram.
I am so very fortunate to have a husband who is supportive of me and any decisions I make concerning my health. He has always respected my need to understand what is going on in my body and plan a course of action I feel good about. This would be so much harder without that support.

Friday, July 10, 2015

Saga continues

I met with an oncologist early this week. She outlined the chemotherapy regimen she recommends for me. It isn't enticing. If I had a different kind of cancer there would be newer "targeted" drugs they could give. Since I have this weird triple negative kind of cancer, all they can offer me is the older more toxic drugs they have given for decades. These are the ones that have the nasty side effects; hair loss, nausea, fatigue, etc... Since my appointment with her I have also found that the more toxic of the two also increases the likelihood I will develop a lethal type of leukemia within 10 years of taking the chemo. I could also have lasting side effects like foggy thinking (chemo brain),  neuropathy, pain, skin problems, etc...
I found an article in a reputable oncology journal that says over treatment with chemo for early stage breast cancers likely causes more harm than good. Treating with chemo as an adjuvant therapy is controversial to say the least.
The oncologist said I needed to have the lymph node biopsy- she would recommend more treatments if the node was positive. If it is negative she would only want to give 4 treatments 3 weeks apart.
I decided to consult my general practitioner, a D.O. that I like and respect a lot. She also encouraged me to have the lymph node biopsy, but for a very different reason. If the lymph node is negative we agreed there is very little chance the cancer had left the breast. If there is little chance of that, then I think it is a case of overkill to have chemo- I feel the risks outweigh the likelihood of benefit.
The oncologist told me her recommendation is based on numerous studies that have shown the prognosis for women with my type of cancer is more favorable when chemo is given after surgery and before radiation. I wonder how they can know which of those women who survived with the chemo would not have survived without it. What if their cancer was completely eradicated with the surgery and they never really needed the treatment at all? Cause and effect seems impossible to predict to me. There are too many other factors that could affect the outcomes like; family history, diet and lifestyle, emotional support, etc...
I am going to see a radiation oncologist this week as well as my gynecologist, another doctor I like, respect, and have a long history with. I plan to gather as much information as I can, ask opinions from my personal doctors who know me, and hope the best course for me will be revealed.
I am also trying to reach my surgeon to get the lymph node biopsy scheduled and done. I hate to have another surgery but I feel like my decisions will be easier to make when I know that piece of information.
Thank you to all of you who have sent prayers and messages of support. It is wonderful to have caring family and friends.

Later,
S

Monday, June 22, 2015

Still Not Over

The pathology report was not what we had hoped. It wasn't just DCIS, although there was some DCIS present- it was about 25% of the tumor. It is still triple negative which means they have no drug therapy to offer me. As a result of that the recommendation decided on by the "tumor board" is: take a lymph node just to be sure the cancer has not spread, do radiation therapy to make sure there isn't a stray cancer cell still in there, and do some form of chemotherapy. I certainly wasn't expecting that.
These are the standard recommendations for anyone with triple negative breast cancer and this is the recommendation they must give me to cover their a****.
They acknowledge that this is not a typical triple negative tumor. It is slow growing; in fact only a third of it seemed to be dividing, there were necrotic (dying) cells in it, all of the margins were clear, and there seemed to be no lymphatic or vascular involvement.
I agreed to meet with a radiologist and an oncologist to hear what they have to say, but I am going to wait until July when Billy can go with me. I seriously doubt I will have any of those treatments, but we will see after I meet with the experts.
God I am so ready for this to be over!

Friday, June 5, 2015

Post Surgery

The lumpectomy is over. I didn't realize how good it would feel to know the cancer is definitely gone. Apparently I was more stressed about it than I realized.
The surgical experience wasn't bad at all. Really. I talked with a good friend who is an anesthetist and got the skinny on what to request. I had the drug that killed Michael Jackson. It didn't require intubation, I didn't feel any nausea when I came out of it, and suffered no after effects from it that I can tell. I took a 3 hour nap in the afternoon but that could be from not sleeping much at all the night before. I have taken hydrocodone proactively so I haven't had a lot of pain. I showered today and saw the incision for the first time. It doesn't look too terribly bad- probably because I have had ice on it continuously since surgery. I bruised more after the biopsy and also had a large hematoma- probably because I didn't continuously ice after that procedure.
Now I am just waiting for the path report. The surgeon told Billy he is still hoping it is DCIS. I am hoping that as well. If it is then I am done with treatment. If it isn't there will be a decision to make about whether or not to have radiation therapy. I am leaning towards not, but I won't commit to any decision until I have the pathology report. They said that would be Monday, but it could happen today (Friday).
I am taking it easy- something I have no trouble doing. Aura was here until this morning and Billy and Hannah will be here until June 13th. I am happily being waited on. It feels like a vacation to have others prepare my food, wash the dishes, feed the animals, water the plants. It is nice to have willing caretakers. I am truly blessed.

Tuesday, May 26, 2015

More Health Challenges

Well, I haven't posted in a long time because I have been super busy- not just with my healing activities.
Billy, his mother, and I spent 5 days in NYC in early May on a "Broadway Binge". We saw 5 plays in 4 days! They all had merit but Carole King's Beautiful was our favorite. We knew all of the songs of course, the actress portraying Carole had an awesome voice, and I learned a lot about her rise to fame that I never knew.
Right before our trip I went to Atlanta and had a thermographic scan of my breast as well as as something called "Sure Touch". I already explained thermography in an earlier post so I won't repeat that. Sure Touch is an extremely sensitive tactile examination. A rectangular disk is passed over the breast tissue with some lotion to help it stay in contact with the skin. It detects levels of hardness. Obviously tumors are harder than normal breast tissue. It detected something at the tumor sight and also flagged some ares to watch on successive examinations. It can supposedly detect masses that are millimeters in size as opposed to mammogram which can only detect something that is centimeters in size... hence that is why they only found my tumor after it was a centimeter and a half, even though I had mammograms every 6-12 months for many years prior.
I hope to use that to monitor future changes in my breasts.
So I was supposed to have a lumpectomy tomorrow. I let Dr. B talk me into it the last time I saw him. He believes this will turn out to be ductal carcinoma in situ (explained earlier) or perhaps just atypical hyperplasia which I had on a biopsy a few years ago. That would be not malignant. He is so sure this is relatively harmless that he isn't taking a lymph node at the surgery. He volunteered that concession without me asking. For those of you who don't know, lymphadenectomy carries its own risk of complications.
So I had resigned myself to having the surgery and then I got sick over the weekend. Seems like a cold- haven't had one of those in a long time. My surgery has been postponed for a week and will now happen on June 3rd.
I started the process  of having my amalgam fillings removed last week. One down 3 more to go. Also looks like I may need to have a crown replaced for mercury and for decay.
To top off the month of May, I found out last week that the annoying pain in my knee for the last 2-3 months is due to a tear in the meniscus! Guess what that means. Yep, arthroscopic surgery on my knee one week after my breast surgery. I would ask, "What else could possibly happen now?", but I don't want to tempt those gods. I am trying to look at this like a big maintenance on a car- like having the timing belt and water pump changed every 100,000 miles on the many Hondas I have owned.
Will try to update more regularly. June looks like it is going to be a month of rest and recuperation.

Wednesday, April 15, 2015

Still waiting for enlightenment and/or healing.

I am feeling stronger and more positive every day. The surgeon's office called me a few days ago to ask if I had decided where I would be treated. I told them I had decided not to go to CTCA. They took that to mean that I would be having surgery here in Rome. I made an appointment to go back in the last of this month, ostensibly to schedule surgery. I hope to negotiate another scan of some kind before I do that. I'm not sure what kind of scan, but definitely not a mammogram.
I watched a very interesting 11 part series on natural cures for cancer last week. It presented many different therapies, all of which had worked for the people they interviewed. The doctors, chiropractors, naturopaths, etc. had nothing good to say about radiation and chemotherapy. They pointed out that these treatments do not cure anything. They have nothing to do with the cause of the cancer; like most allopathic treatments they are directed at the symptoms rather than the cause.
I am still tracking down what I believe to be the causes of my cancer. Tomorrow I have an appointment with a dentist in Atlanta who specializes in removing amalgam fillings. I have 4 left. Interesting that one of the 4 is in a tooth that corresponds to my left breast according to Chinese medicine. I have worried for decades about my exposure to Mercury from these old fillings. I never did anything about it (other than make sure my children only had composite fillings) because it is expensive, insurance usually won't pay, and some dentists believe there is more danger of exposure from the removal process. Now I feel like I can't ignore the risk any longer.I had my doctor order a heavy metals screen on me last week. The results aren't back yet, but I am committed to having them removed regardless of the result.
I have also ordered some B17 cream from Mexico, otherwise known as Laetrile. The number of people helped by this natural substance is impressive.
Also the first of my genetic tests came back. I was negative for all 5 of the genetic mutations that supposedly predispose me to Breast cancer.
I don't think I will ever know with certainty what specifically caused me to develop breast cancer. I am doing everything I can to support my immune system, to detoxify my body, and to heal emotional wounds from my past. None of this can hurt me. I can't say that about surgery, radiation, or chemotherapy.
There are many benefits of this self-imposed "treatment". I have lost 25+ pounds. I feel better mentally than I have in decades. I have lots of energy. I fall asleep easily and wake naturally after about 6 hours ready to get up and start my day.
My husband is the size he was when we met. He also has more energy and feels better than he has in decades.
So how long will I wait before having surgery? I am not sure. I hope to find somewhere to have a thermographic scan done. It is completely safe. It pinpoints areas of heat in the body. Cancer cells are dividing rapidly and give off heat from that process. I also may have another ultrasound if that doesn't work out. I will probably have to pay for whatever scan I have, and ultrasound is a fraction of the cost of an MRI.
I will see how I feel when I next visit the surgeon. If I can prove to him and myself that the tumor is not growing, even better if it seems to be shrinking, then I will wait a bit longer. My hope is that I won't have to have surgery at all.
I am optimistic.😊

Thursday, March 26, 2015

The Saga Continues

After that last post things got kind of scarey. The following day when I saw the surgeon she did another ultrasound and thought she saw another suspicious area near the tumor as well as something near the nipple. She then proceeded to say if she had to remove that as well I would be so disfigured I would probably prefer to have a mastectomy. She decided to set up a consultation for me the following day with a plastic surgeon to discuss mastectomy and reconstruction, a geneticist to take a history and probably order genetic testing, and the oncologist to talk to me about chemotherapy.
That all really knocked me for a loop. I had been expecting we would discuss lumpectomy and radiation, but never had I considered mastectomy and chemotherapy. I left that afternoon very worried and upset.
I had told Billy not to worry about going down with me but after all of that I knew I had to have some support. I called him crying and he said he would come down and be with me for the rest of the time.
The next day we saw all those people. The plastic surgeon told me all about how he could rebuild my breasts after I had one or more removed. He would have to surgically alter the right one to match the left even if I didn't need to have it removed.
The geneticist had my blood drawn to test for all of the cancer markers since there is just about every cancer possible on my mother's side of the family.
The oncologist told me with the type of cancer I have chemotherapy would be necessary even if my lymph nodes were clear.
All of my worst fears were suddenly materializing.
The only bright spot in that day came when I met with the naturopath who works with the oncologist. He was very positive about the program I had put myself on to try to help my body heal itself and even suggested a few other herbs and supplements he knew to be therapeutic for cancer.
The surgeon had ordered a biopsy of the other areas of concern she saw. It was to be done Friday morning. When I went to have the ultrasound biopsy it was determined that the area in question was too small and hard to find for an ultrasound biopsy, and I would need an MRI biopsy instead. Because of various reasons, all of them technical, the radiologist and I decided not to do that at that time. I was really feeling overwhelmed. My world had been rocked completely out of its orbit.
We came home and decided to wait a couple of weeks until the genetic tests were in and let our brains digest all we had been told.
I should say here that everything we were told was based on studies about other types of breast cancer because the kind I have is so uncommon there haven't been any studies done on it specifically. There is a lot of controversy about how aggressive treatment needs to be.
After coming home I decided to see the surgeon here one more time just to get closure. I had pretty much decided to have whatever treatment I would get at CTCA in Newnan.
When I saw the surgeon in Rome he disagreed with pretty much everything they had told me at CTCA. He believes the tumor may actually be DCIS and I may not even need a lymph node biopsy. He also believes the most treatment I would need after surgery would be radiation; certainly not chemotherapy. So I now have two very different plans suggested. It seems to me that one is a minimalist approach where we do the only thing we are sure needs to be done. After the tumor is out it can be examined, categorized, and the next step will then become evident. The other plan is we assume the worst and do it all. At the moment I am feeling strongly that I prefer the minimalist plan.
The surgeon has assured me if the tumor is not DCIS as he suspects, or if I feel like I need some more advice, he will send the tumor or it and me anywhere I want to go. Apparently Sloan Kettering is the number one hospital for breast cancer in the country.
I, of course, am still eating raw and living food, still doing enemas for cleansing, and still hoping, as we all discuss and debate what my treatment will be, my body is launching all out war on the cancer in my breast. It would be wonderful if the damn thing just disappeared while we try to decide how to fight it.
The next time I post I will probably have made a decision about how to proceed from here.
Thanks to all for your prayers and well wishes.

Tuesday, March 17, 2015

Eating raw and emotional healing

So... I have finished my 10 day program at the Living Foods Institute in Atlanta. I must say it was the most incredible experience I have ever had. For 10 days I did enemas morning and night, ate only live raw food prepared deliciously, and saw the most wonderful therapists ever. Can you tell I enjoyed it?
We made food every morning; dishes like raw hummus, guacamole, lasagne, spaghetti (zucchini noodles), lots of salads with sprouted beans and seeds, wheatgrass juice every morning, even cookies and crackers made in a dehydrator. I have never eaten so well. I lost over 10 pounds without ever being hungry. We had classes every afternoon on cleansing, chi gong, various mind body therapies, and lots of gratitude circles. I made some amazing friends and heard unbelievable stories of healing.
Today is my 59th birthday and I feel better than I have in more than a decade. I have had no sugar, no alcohol, no gluten, no refined foods, and very little cooked foods for the last month.
I am in Newnan, Ga. at Cancer Treatment Centers of America, where I had my first day of a 3 day evaluation to decide on a treatment plan for my cancer. This hospital is like a 5 star resort. I got there this morning at 8:00, waited about 10 minutes, then went to a room in the outpatient clinic where I stayed for 2 and a half hours while various people came to me to take my history, draw my blood, examine me, etc... Did you get that part about them coming to me?
I left at 10:30 to go and kill some time until lunch. Shortly after I left the nurse who drew my blood called me to tell me my blood sugar was low and to be sure I felt all right and was coming back to eat something soon.
I returned at 11:30 to get a very large salad of mixed greens, carrots, red onions and spring onions, all of which were organic. I also got a piece of grilled salmon and half a sweet potato. 2 bottles of water completed my Free lunch. Yes, I said free. Patients eat free and their caregivers get a 60% discount. I saw a movie and returned at 4 to eat basically the same thing again.
I am now back at my hotel room (paid for by the hospital). Tomorrow I will meet with a mind body therapist, have an EKG, have a patient advocate consult as well as a nurse consult and a surgical consult. On Thursday I will meet with a naturopath, a nutritionist, another nurse, and the oncologist. At that time my "team" will tell me what they recommend my plan of action should be.
I will then go home and talk things over with my husband and decide what I want to do.
I would strongly urge everyone who knows someone with cancer to tell them to contact this hospital group. They fly people in from all over. I saw their stretch limousine bringing someone from the airport today. I feel very fortunate to have good health insurance that allows me to be here to receive treatment. I will continue this blog as my journey continues. Thanks for all the positive thoughts, the prayers, and support. I am truly blessed.

Friday, March 13, 2015

I figured out what I have.

Well, the next chapter in my odyssey began with me visiting my General Practitoner who I like and respect very much. I had looked up all of the tests they had done on my tumor and figured out what information each one gave, which was mostly what kind of cancer I didn't have. I asked my doctor about "cancer of unknown origin" and she gave me a printout of current articles about it. Luckily for me, she also "picked up" on a word in my diagnosis that I had mostly ignored. The diagnosis read "Adenocarcinoma Carcinoma of the Breast with Apocrine Features". She looked up the word apocrine and helped me determine that it basically meant cells you would find in sweat glands.
This was key in me figuring out that I did not have a cancer of unknown origin, which gave prognoses of 6-12 months for the most part.
When I finally looked up Apocrine Adenocarcinoma of the Breast, I found that there were a number of characteristics to be glad about. According to peer-reviewed articles I read, this type of cancer only occurs in 1-4% of breast cancers, it is thought to be unlikely to metastasize, and also unlikely to recur. It appears to start as DCIS, ductal carcinoma in situ, meaning contained entirely in a milk duct, then is taken on by apocrine cells and slowly grows from there. Unfortunately there wasn't a lot of data because it is so rare.
When I saw a surgeon the following week, he confirmed this for me, ordered an MRI of both breasts, and then said if nothing further showed up on the MRI, he would do a lumpectomy and remove the sentinel lymph node (the one closest to that breast), then send me to an oncologist.
So I now knew I didn't have something horrible that would kill me very soon. So what next? Next for me was to consult everyone I knew and respected who I thought could advise me on what to do to get better.
One of these people, a healer I have known and trusted for many years, advised me to contact the Living Foods Institute in Atlanta. After perusing their website I called the director to find out about going to visit them on one of their free days to learn about what they offer. She helped me decide that I should come to their very next 10 day program before having surgery or any other treatment.
At this same time, after looking around at hospitals and what they offered, I became intrigued by Cancer Treatment Center of America in Newnan, Ga. Besides having doctors with most incredible bios, they also offered alternative therapies like acupuncture, massage, naturopathy, etc...
I made plans to go there to be evaluated as soon as my 10 day program in Atlanta was over.
I must say one more thing about my journey at this time. Although I know a lot about nutrition, exercise, and health in general, I had not been taking care of myself. I drank alcohol nearly every night, was eating way too much rich food, and was worrying about those things as well as the weight I had gained because of living my life that way.
My husband and I went on an overnight trip to Savannah the weekend after I got the diagnosis. That night in Savannah, February 15, I had the last alcohol I would consume until I am well. I also ate the last meat (seafood) or cooked food I would eat for a very long time.

Thursday, March 5, 2015

My diagnosis

My name is Sandra. I am 58 years old.
For many years I have had "abnormal" mammograms. The first time I experienced this was in 2009. The radiologist told me he saw clusters of calcium deposits in my left breast. He advised me to have a stereotactic biopsy which I did right after the mammogram. The report was atypical hyperplasia and I was advised by a surgeon to have further surgery to check for DCIS. For those of you who don't know, DCIS is ductal carcinoma in situ, which means the malignancy is completely contained in a milk duct of the breast. This is also known as Stage 0 breast cancer. It is well known that this type of cancer rarely metastasises. Many women choose to have it removed without any follow-up treatment like radiation or chemotherapy. I asked the surgeon what he would recommend if he found DCIS. He said radiation was what he would advise. I told him I wouldn't have radiation for DCIS because if I ever got "real" breast cancer I wouldn't be able to have radiation on that breast again. (Again, in case you don't know, you can only have radiation once on any area of your body.)
I refused to have the surgery but agreed to have a follow-up mammogram on that breast in 6 months. In the years since that first biopsy I have twice been advised to have biopsies for clusters of calcium deposits but have refused. For the last 2 years I have had screening mammograms once a year and diagnostic mammograms of my left breast in between.
On February of this year, 2015, I went in for my 6 month diagnostic mammogram of the left breast. The radiologist said he saw a shadow on the films that he felt needed further clarification. He ordered an ultrasound to be done immediately. 
The ultrasound showed 3 rather large cysts and an irregularly shaped mass. I was watching the ultrasound screen and knew this was something that should not be there.
The radiologist wanted to do the biopsy right away but I chose to wait two days. I had plans I did not want to cancel and I needed the 2 days to digest what was happening to me.
I had the biopsy 2 days later and received the results by phone the following day. The PA who called me said I had an Adenocarcinoma of the Breast. She said she had never seen that particular diagnosis so she couldn't really tell me much about my cancer.
I picked up my biopsy report three days later and had a scary conversation with the PA. She told me again she really didn't know much about it. She had no idea what the various stains that were done meant. When I asked if it could be a metastasis from cancer somewhere else she said yes it could be. She told me I should consider getting genetic testing for the "breast cancer genes". When I asked why  I should do that before following through with this particular problem she said, "If you do have a
genetic predisposition to breast cancer you might want to consider having a double mastectomy."
Wow! I wasn't expecting that.