08.26.06
How Shall We Then Treat?
I’m opening this new category as another spinoff from Patti’s suggestion on Steele’s MDS Herb Chronicle. I have reposted her post below as an introduction to this new topic. So, without further ado, I look forward to reading your comments. 
Marla,
I wanted to have a very frank discussion about medicine and I’m not sure where to put it so maybe you can take this and run with it and we can all chat about it. Not sure if you want to move it.
If you were faced with let’s say, a cancer, would you (or should we, I, etc.) consider conventional chemo or are we better off to do a Gerson type treatment, etc.? I’ve been giving this a lot of thought regarding my own beliefs in light of mom’s illness and frequently wonder what I would do if I was told I had cancer, specifically. I use that one since that’s the most likely scenario for a person requiring chemo. Would it depend on the “cure” rate a certain cancer has with chemo? Would I do integrative medicine? What would I do? I’m curious if others have thought about this in light of the illnesses that we are all dealing with today.
Patti
Administrator said,
August 27, 2006 at 6:23 pm
Patti, I don’t know if this is gonna answer any of your questions, but my personal approach would depend upon the particular condition. That is, there are a lot of different types of cancers. How they progress and affect the body would direct my course of treatment–i.e. how aggressive I would be. So having said that, I’ll try to share my “general” philosophy of how I would approach all illnesses. Perhaps you’ll understand why I chose to treat my aplastic anemia the way I did. I realise treatment decisions are personal choices, so I don’t expect anyone to follow my beliefs. I am only sharing them since you asked.
I “try” to live my life according to my conscience. Can’t say I always succeed, but I have done pretty well so far. The decisions I make for my health is very much intertwined with my belief in God and His principles. So if a person doesn’t believe in God or doesn’t truly believe that God understands how our bodies are made, then what I’m about to write will make no sense to them. It’ll all be gobbledee goop because I think the scripture points out that, “. . .the natural man does not receive the things of the Spirit of God, for they are foolishness to him; nor can he know them, because they are spiritually discerned.” (Paul to the Corinthians). I believe that God created the world and all that is in it by His wisdom and that He did it how He describes it in the Bible. “The LORD by wisdom founded the earth; By understanding He established the heavens; By His knowledge the depths were broken up, And clouds drop down the dew.” (Proverbs of Solomon). God is the “ultimate” scientist. He knows all the secrets of the universe for He created it. So who better to ask for guidance for health than God? I’ve been told that the Bible is not a science book, but I believe that the Bible does show us many scientific concepts if we search for them. Just from the passage above, we can see that God made things in an orderly fashion. Nature follows natural laws. Thus our bodies also follow natural laws.
So, you ask about chemotherapy. Well, what do we know about chemotherapy? They are deadly poisons. The laws of nature tell me that if we take poison/s into our bodies, then we will poison ourselves, not cure ourselves. (Consider relapses, metastases, and secondary malignancies. Cure rates? I don’t even trust their statistics based on the arguments from people like Ralph Moss, Russell Blaylock, Gary Null, etc). And I think it inappropriate to purposefully poison ourselves, then pray and beg God to heal us. By doing so, we ask and beg God to go against His own laws. Then we become angry or frustrated at Him if He does not heal us by going against His nature. Upon reading the statistics and experiences of others, my instincts are confirmed, and my resolve is strengthened to avoid chemotherapies of all kinds. So under no circumstances would I knowingly take chemotherapy for any illness. By chemotherapy, I am referring to drugs used to treat cancers like alkylating agents, antitumor antibodies, platinum analogs, or drugs that interfere with hormones like Tamoxifen. At this point, I’m not even comfortable with monoclonal antibodies or immune therapies like interleukins and interferons. Likewise, I didn’t take immunoglobulins for my aplastic because I didn’t like what it was supposed to do. Some definitions of chemotherapy are quite broad and basically refer to “chemical therapy.” In that case even antibiotics are considered chemos, but I’m not sure I would quite go that far. As a matter of fact during my battle with aplastic anemia, I did use quite a bit of antibiotics. I’m not entirely sure all of it was necessary, but I did do it. But since then, I have not taken any antibiotics even for a bout with urinary tract infections. I have since treated myself with natural antibiotics, and so far, it has worked well for me. My “goal” is to never take medically dispensed antibiotics again because I know over use of antibiotics (which is common today) causes it’s own set of health problems. But I don’t know what my future holds, and I should be careful about saying, “never.”
As far as radiation treatments, again, what do we know about this? Radiation damages cells even to the DNA level. The effects of radiation is known to be cummulative, so that there is a “limit” to how much radiation you can receive without “noticeable” harm. Makes you curious why that is, huh? I “think” it’s because if too much of your DNA is damaged, you can not reproduce enough healthy cells to continue to function. Madeline Marget, author of Life’s Blood, wrote of her sister’s experience with receiving an overdose of radiation from her bone marrow transplant. This is what she wrote, “Roberta [Marget's sister], had cummulative radiation to the neck which invisibly severed her spinal cord. Symptoms appeared less than a year after transplant. She couldn’t walk and was incontinent. She had radiation induced myelitis of the upper spine. That radiation induced myelitis was progressive and kept getting worse–to later leave her quadriplegic and dependent on a respirator.” If I were to take any radiation therapy, then I should expect to suffer the consequences. Make sure your radiologist “knows” what he’s doing. I should not expect to escape damage to my body. So if at all possible I would avoid this treatment option, however, I know that not all tumors can be excised for various reasons–i.e. location, massive entanglement with vessels and nerves, etc. So depending upon my pain and the ability for my organs to function, I would consider this only as a palliative measure. And even then, I think I would be very hesitant.
So this brings me to surgery. If I were growing a tumor so large that it was blocking off vessels and causing extreme pain, I “might” consider surgery to debulk the tumor, but not to take out any healthy surrounding tissue as is commonly done for “good measure.” Don’t touch or remove any lymph nodes even if they are affected. Only the tumor, and if that’s not possible, then I wouldn’t want them to touch it. The reason I would try to avoid surgery falls along the lines with the controversy of whether biopsies actually spread cancer cells. The argument goes that a tumor encapsulates the cancer cells, but when a needle pokes through the membrane, then it can allow the cancer cells to leak out and spread to other parts of the body. I would refrain from biopsies, and debulking a tumor would only be resorted to in very, very desperate times. I do realise how huge some tumors can get. Ouch. But check out Karl Loren regarding biopsies http://www.karlloren.com/biopsy/index.htm
Pain control? I would search out natural substances for pain management–i.e. herbs, acupuncture, etc.
I think of how many times I’ve read and heard of Christians “praying” to be sent to or shown “the” “right” doctor. Instead, I would consider what Jesus did to heal people. When the sick flocked to Jesus, did He say to them, “Go see a doctor and send them away?” No. He did not. He healed them Himself. He even told the physicians, “Physicians, heal thyself.” He knew they didn’t know how to even heal themselves. The Bible even goes as far to say that, “Cursed is the man who trusts in man and makes flesh his strength, whose heart departs from the Lord” (Jeremiah). I especially don’t trust those who say that food has no bearing on your health. That only shows their ignorance.
Therefore, what would I do? I should look to God for wisdom and healing, and not put all my trust in man. Now I do respect other people’s studies and observations because as Solomon (the wisest man) tells us in Proverbs, “without counsel, plans go awry, but in the multitude of counselors, they are established.” So I would try to seek out others regarding health issues, but if they do not conform to God’s principles, I would reject them–i.e. no poisons. Read, read, read, read everything you can get your hands on both conventional literature and alternative. Compare everything, consider everything. It can help strengthen your convictions and give you a plan of action.
So what else did Jesus do aside from touching people to heal them? He “fed” them both in word and with real “food.” I think healing is both physical and spiritual, thus feeding with the Word and with food is so very important. Examples in the Bible show Jesus telling people to bathe in waters, use mud/clays, the old testament people used herbs. Jesus would command someone to do such and such, and the mere obedience and belief of that person was worthy enough for Jesus to “marvel” at, as is noted in the accounts of the Centurian and the woman who touched the hem of his gown to stop her blood flow. I would try to follow the laws of nature. How does the body normally function? Find naturally healthy people and follow what they do to keep themselves healthy. I think Weston Price, Stefansson, McCarrison, King, Beaumont, etc. all did good jobs in helping us to understand health. (Interestingly, none of them had to do much in the way of animal experimentation, that is, no severing of limbs or injecting of toxins was required. Merely observation based on different diets was used). The body runs on food, air, water, sunlight, exercise, good attitudes, adequate rest, etc. Do all the things that help the body function efficiently, and it will help the body heal. Follow the laws of nature that God created.
How do supplements fit in? I try to avoid “bottled” supplements as much as possible, but I do feel that some supplementation has been helpful in people who were so severely malnourished (which some believe cancer patients are). Being that I’ve been sick enough to have aplastic anemia and other health conditions, I do feel that I have been malnourished and thus I have used supplements and still do occasionally. I would opt for the most natural forms of supplements –i.e. whole food sources rather than fractionated substances. Herbs are acceptable to me as they are whole foods. I would avoid all those MLM products and products that try to blend in all sorts of things together to make a “power” pill or drink. I don’t like gimicks and expensive gadgets. I don’t think they are necessary. However, if you do chose to supplement, know that there are some products that are better than others, so do your homework. I suppose if you have lots of money to spend on gadgets, it’s okay too, but I don’t think they are “musts.” Use a little ingenuity to make your own gadgets. Jesus never charged people money to heal them. He used things that were free and abundant in nature, so if you can’t afford the fancy supplements and gadgets, then I think God has given us a more natural way to do it on a budget. I consider juicing supplementation. I did lots of juicing myself, but probably over did it. However, it didn’t kill me, and I have recovered, so I feel okay about recommending some juicing.
I would avoid as much processed foods as possible as well as foods that have been adulterated with hormones, antibiotics, pesticides, etc. Those only tax the body, and I would also avoid any other kinds of medications like aspirins, anti-depressants, etc. as much as possible. And when I’m doing the best of my ability to help myself without defiling the body God gave me, then I pray to God to show me what else I need to do (or not do), and to give me the courage and the strength to do it.
Jesus healed those who sought him. I think that shows us that we need to make the effort to search things out. He said, “Seek and ye shall find, Knock and it shall be opened.” He didn’t say sit on your bum, and I’ll take care of you. In James He says, “If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways.” So you have to both “ask” AND “believe.” We can’t worship both God and man(doctors). As Psalms says, “I hate the double-minded, but I love Your law.” If after all this I still die, then I have lived according to my conscience, and I am satisfied.
This is glimpse of my general philosophy regarding treating my body, but the “details” of what foods and supplements I choose or have chosen is a whole other post/s. But bottom line is that foods and supplements would be my choice. I also realise that cancer is a big business, and that I may have trouble finding a doctor who would comply with my wishes. They may refuse me completely, and at that point, I would have to go completely natural, and just let the knives fly where they may. I hope I never have to make that choice. But I feel that this is the best way I can respect and protect the body that God has given me.
Marla
Jen Backus said,
August 27, 2006 at 9:53 pm
Marla,
That was very well written and strengthens what I have been shown in this last two and a half years. Thank you for taking the time to write it all out. I am so glad I found your site and another like-minded person.
Best wishes.
Administrator said,
August 29, 2006 at 10:46 am
Hi Jen:
Thanks for dropping by, taking the time to read my lengthy post, and leaving a comment. I must say that knowing about some of the things you and Samuel have been through these past 2 1/2 years is heart-wrenching. Yet, any journal entries on your website I have read from you have never shown loss in faith or anger towards God. Honestly, when I first read Samuel’s story, through all the physical horror you document, your obvious love and respect towards God really shined through, and for which I greatly respect you. I do know there are other parents like you who have had their child suffer and have lost, and also remained faithful to God. But you have shared so much more intimate details of Samuel’s pain and suffering than most people I have read of that it allowed me to feel closer to him as a real person. You then have continued on to try to naturally help Samuel, which gained even more respect from me. I don’t know if I could handle a fraction of what you have of witnessing all the pain and anguish your little boy endured and continues to endure each day. And yet your faith remains unshaken. I am in awe. I thank you for sharing your life and struggles because I see it as a beacon of faith and truth in the face of extremely difficult times. You and Samuel have been in my prayers. I’m confident God has not turned away from you!
Marla
Patti said,
August 29, 2006 at 9:28 pm
Marla,
Helpful post! With mom’s illness such in the forefront of our lives I have really been thinking about this a lot lately. What would I do? After reading your post I think I have a good understanding of what you mean. And it makes sense to me. Which means I must just be a weenie!! LOL
My struggle is with shunning doctors completely if I had some form of cancer. Like for me, I wonder, what if there’s a 90% cure rate with their chemo but an unknown with my natural ways? Does that make sense? I wonder about combining the natural with the medical to try and fix the underlying condition that caused the cancer and then the medical to fix the cancer itself. Does that work? I don’t know. I think I might ask Dr.Reuter next time I see her. She deals with this daily. That’s her job. If I had to venture a guess I think she’d say skip the chemo. I say that because when she found out mom refused the Vidaza she was thrilled that we were going all natural. So somewhere she must see and understand things I can’t/don’t. I also asked my complimentary medicine doctor one time about mom. He told me he would never take chemo. This guy is an MD but he specializes in using diet and supplements/herbs to heal the body instead of medicine. He uses his MD degree to get testing done mostly. Then uses the test results to figure out how to treat the patient. He’s such a rarity! There are few of him in this country.
I think I would fear the doctors. Isn’t that sad? After everything I’ve seen with mom, to fear these jerks that would tell me I’d die without their drugs? Maybe I would be bolder then I feel right now. I guess a lot would depend on my age and if my children were still at home and how much “risk” I felt like I could take with my health.
In my heart, I know the medicine would be bad and maybe even wrong for me, in my head, I freak out at the thought of leaving my kids behind.
And then I guess, comes the ultimate decision maker and that is my relationship with the Lord. “God hath not given us the spirit of fear, but of love, joy, peace and a sound mind.” James ???
Oh, interesting connection just hit me!! When I think of doctors and cancer I get fear!! When I think of cancer and natural I get hope!! Okay, I think God is fishing out the truth here for me. Funny, huh? Sometimes just writing things out can clarify so much.
I still think I would seek out someone more knowledgeable then I. Like Gerson, or something like that to help me work with the natural. I feel inadequate to do that myself. I’ve done it with mom but I don’t know how I did it. And I have a lot of help now with Dr.Reuter and Dr.Kou. But the first year, we really flew by the seat of our pants. I actually worked with a guy connected to the Weston Price Foundation (on their board or something) and he had mom on all kinds of MLM stuff he sells. It was nuts.
More to say, but I’ve got to call it a night. I still need to hit the “God” site but I’m too tired tonight. I have to do one a at a time.
Thanks for the very good discussion of what you think, Marla! What a help.
patti
Jen Backus said,
August 29, 2006 at 11:08 pm
Statistics mean nothing if you are the one of the percentile the treatment doesn’t work for. Unfortunately, there is no way of knowing that until you start playing the game of Russian Roulette with chemo/radiation. IME, doctors use these supposedly great statistics as scare tactics for many. “If you don’t treat, you will die.” If I only had a dollar for every time I have heard this in relation to my son. For those “cured” by chemo’radiation, there is often if not always a price to pay for their life. Best of luck if you are the statistic who has all the horrific side effects because I can tell you first hand, they have lots of poisons to put you into that prediciment and very few to pull you out. You end up forgotten in the system as they run off to treat the patients who do follow the norm. When we left our former hospital, my ND told me that that establishment was all about their statistics. When we started having unheard of side effects, I contacted places like MSKCC to see if we could transfer and they refused to touch us.
I do believe that alternative treatments are NOT for everyone. It is harder to take responsibility for your own cure than to leave it in the hands of some doctor of whom you can lay blame if the “cure” dues not cure you. Chemo is probably better than someone experimenting with alternatives but never really making the commitment and having it fail, then blaming alternatives. But it depends on who you ask. I think a lot depends on your mindset, your attitude and your beliefs. Alternative treatments require you to take full responsibility anf fight for your life rather than lay down on some table and allow poisons to kill you or “cure” you. I think a lot of Oncologists fear you might be successful and possibly steal some of their business when others start refusing to be led around by their fears so they try to slander any of your efforts if they find out about it. As adults, at least you hsve choices, whereas if you are the parent of a child with cancer, you don’t.
Well, you don’t that is until you become one of those far out statistics. Everything that happened to my son was done in the first round of chemo. ONE round. It took six months to undo most of that damage and get him back to a semi functioning child again. We are now over two years down the road from diagnosis and still trying to deal with the fallout. He should be dead, he should have brain damage, he should NOT be normal. We got a second chance and did everything we could to not screw it up. What happened to him was and is horrible, but in some ways a blessing because we were able to spare him a lot of chemotherapy he would have had to endure if things would have went smoothly. We were able to get out, and it was tricky, but we did it. We did CAM things during chemo and I think the most important and lifesaveing thing I did for him was to give him my breastmilk for a year on treatment. He never got sick beyond that initial month even though his ANC fell to 250 or so. Our Onc was astonished he never zeroed out but he did not. He does not get sick to date, now some two and a half years later.
I am in line with what Marla said. It is ridiculous to do something so directly against God’s law such as to knowingly take in poison and then ask God to spare you the side effects. It seems a foolish prayer indeed, yet I watch and know many who subscribe to it. Most parents are not doing this for their kids, they are doing it for themselves. If they stopped to put themselves into their child’s shoes and examined their quality of life, they might figure that out. There was a time when Samuel was critical, in the ICU and comatose. Everything was going wrong and no one had a clue what to do. That was very scary. I told God to either take him or fix him because I could not take any more of it. I once asked God why He does not spare all these children who are literally on their death beds, from chemo more than from cancer at that point. He told me even if He cured them, their parents would continue to poison them because most people do not believe in miracles. Oncologists certainly do not. The child would just suffer and suffer even when there is no more cancer because no one is ever sure about if and when to STOP. The child would never be truly free of that life. That is a cruel reality.
If you are going to go with alternative, then the bottom line is you have to do it 100%. That is where we are and I would never go back. This is one decision I wanted to make from the beginning, and certainly after that first month. I am so thankful God helped us “get out.” We got our miracle.
Best Wishes.
Jen
Patti said,
August 30, 2006 at 3:38 pm
Jen,
Wow! It sounds like you have really been on both sides of this issue. I don’t know anything about your son, Samuel, but it sounds like you guys made some good decisions. What you and Marla wrote has so solidified for me what is right and wrong with this issue. Man, the doctors just put that constant fear in a person/parent. My mom had breast cancer and did their radiation and tamoxifen and I kept telling her, “did they tell you that the radiation will likely cause MDS in your future?” Of course, not. She won’t believe me. Despite what she’s seen with my MIL.
My sister’s husband made the decision to do all of the medical stuff on his daughter (my sister’s step-daughter) when she got adrenal cancer at age 4. She died when she was 11. Her mom died at age 39 from brain cancer and Jessica and one of her brothers had the same cancer gene. Everytime they would “get rid” of one cancer another developed. I often wonder if they’d just taken care of her naturally if she’d still be alive today. She was such an incredibly sweet little girl. I can’t imagine being a parent and being faced with this decision. Especially because the doctor’s would fight it tooth and nail. It’s scary that parents can lose their kids by making the right decision for them also. That is really scary.
It really does all come down to fear. Fear that the doctor’s are “right.” Fear that I’d make the wrong decision. Fear that I’d lose the battle, etc. And God hath not given the spirit of fear.
Ah, I knew, Marla, that writing this all out would clarify for me what I was thinking and trying to understand.
Patti
Patti said,
August 30, 2006 at 9:38 pm
Oy, Marla, I posted a few hours ago and your spam blocker didn’t like me again. Personally, I’m thinking you like me blocked.
I’ll have to rewrite what I wrote later. Off to bed.
Patti
Andrea said,
September 1, 2006 at 6:59 pm
Twelve years ago, I had a very suspicious breast lump. It was over an inch in diameter and hard–not a good sign. This is also during the period that I had other health problems, notably terrible, debilitating asthma.
I went to Dr. Christiane Northrup. She had been my ob-gyn for my second born daughter, and I really liked her. She examined my breast and said yes, I could get it biopsied. I think she saw I looked really scared, because she then said, “Or, you can read this book [Creating Health] and put a castor oil compress on your breast 2x/day and meditate on nurturance. ” She actually wrote those things on a prescription pad!
I didn’t get a biopsy. I decided to assume it was cancer of the worst kind, so that I would be motivated to do my best to heal myself. I did not believe that poisoning my body in the interests of poisoning the cancer could possibly be the best thing for me.
I did read the book, and many other books on health and healing, and I did do the castor oil packs and meditated on nurturance. Based on my reading and praying, I began a health restoration program of a macrobiotic diet, daily walks, daily prayer and meditation, and yoga.
The lump stayed the same for about a year. Then it began to flatten out, and after a total of 18 months it was gone entirely. My asthma also disappeared slowly during this period.
So, no, I wouldn’t go with chemo and radiation and surgery if I had cancer. I would do the same thing again.
I know someone, however, who discovered he had lymphoma when it was already pretty advanced. He pursued natural methods for about 5 months, but the tumor continued to grow and began to eat away his bone. So he did some chemo, the tumor shrank, and he began to feel better. He’s now done with the chemo and pursuing natural means even more vigorously. So it seems like sometimes chemo, or radiation, or surgery, could buy you some time. For me, it would be only a stopgap, to keep me alive, to buy me time if I needed it.
But ultimately, the body has to do the healing, doesn’t it? God designed it to do that very thing. I think the title of that book that Dr. Northrup recommended was the most important thing for me. “Creating Health” is what we want, not fighting illness. If our bodies are vibrating with health, illness cannot get a foothold.
Andrea
PS–I would love to read Jen’s story. How to find her website?
Administrator said,
September 3, 2006 at 10:22 pm
Hey Patti: Glad to be of any help. I do know what you mean, tho, about having to think this stuff out. It’s easier said than done. Fortunately, for me, the hardest part was in the beginning. As time goes on, and you find people to network with, it does get easier. The fear you mention is very real. I remember going through a lot of that. It was horrible. And the same Bible verse you quoted is what I would tell myself, too. “God has not given us a spirit of fear, but of power and of love, and a sound mind.” (Timothy). When I felt fear, I would try to remind myself that that feeling wasn’t coming from God. I tried not to beat myself up over it, tho, because I do believe God does understand it. Remember the story of Gideon? Ha ha! He was afraid and destroyed the idol at night when it was less likely for him to be caught. But God didn’t get angry at him for that. Another verse that helped me was in Jeremiah, “If you have run with the footmen, and they have wearied you, Then how can you contend with horses? And if in the land of peace, In which you trusted, they wearied you,Then how will you do in the floodplain of the Jordan?” I really loved that one. It spoke to me about enduring. It can always get worse, and if I can’t handle it now, then I’m in sorry shape! But I did struggle a lot with my feelings. And I did feel angry about my choices (or lack of it!). People would say I was brave, but I felt what other choice do I have? I talked to Brian about this, like what is bravery anyway? I didn’t feel brave. He said that he thinks that being brave is when you’re in a tough spot and you do the right thing. That’s what bravery meant to him, and doesn’t really mean that you don’t feel fear.
I also don’t think there’s anything wrong with seeking out a healthcare practitioner if you feel you really need one. Just don’t forget your knowledge and intuition, tho. Otherwise, what difference would it be to go to a naturopath or a mainstream doc, if all you’re gonna do it hand over your health to whatever they decide? That’s my feeling, anyway.
Interesting about the MLM stuff. If you don’t mind me asking, which MLM products was she taking? And from Weston Price? Hmmm. Cod liver oil and X factor stuff? Have you been on their forum? Very active there, and lots of good info when I was on it about 3 years ago. I haven’t been there for a while, tho.
Regarding your relatives with the cancer “gene.” Were they actually tested and found to have a cancer gene?
Jen: Thanks so much for sharing your insights. I do agree with so much of what you wrote. I know of other people who have documented their experiences on their websites, but when things went south (like the person died or became permanently crippled), then some of them (some family members) “remove” their websites. I can understand why some people do that because they don’t want the horrible memory there and/or don’t want to discourage new people just embarking on treatment. However, I think removing their stories are a dis-service to others who are just coming into the fight and searching for information–good and/or bad. How can people make informed choices if all they see is the good stuff? Or watered down stuff? You know what I mean? If all the info was out there, then each person could chose for themselves what risks they’re willing to take. Unfortunately, people aren’t always shown all the risks, and surpisingly not everyone even wants to know them! It’s really a tough call. So I can see how you want to be sensitive to other people’s feelings, but at the same time want to show reality.
What you wrote about parents doing those things for themselves did strike me. I didn’t think about it in that light, but I think you’re right about that. But we are all human and I have to remember to be careful about judging other people. As it says in Romans, “whoever you are who judge, for in whatever you judge another you condemn yourself; for you who judge practice the same things.” It doesn’t say that we aren’t to judge, and I know that we do have to make some judgments as the Bible says to be careful with who you chose to hang with. How else do you chose who to hand with if you don’t make some judgment calls. But I try to be careful about judgment. (As I’m sure you are also! I know you are careful about not trampling on other people’s feelings even if you don’t agree with them).
Another point that I agree with you on is doing the alternative 100%. How many times I’ve heard people say they’ve tried “everything.” That’s unlikely. There’s really a lot out there to try, and we don’t have enough “time” to try everything. So when people say they’ve tried everything, then I know they aren’t putting in 100%. Some people say they have a good diet, but I’ve found that what a good diet is to one person is completely different from another person. Some people don’t even have the same definition of what a vegetarian is! Ha ha!
Time is another big factor here, too. One of the first people I followed was Lorraine Day, M.D. One thing she said was you have to work at it “until it works.” She said don’t give yourself a limit and say I’ll try this for 6 months, and if it doesn’t work, then I’m giving up. She said when you start putting limits like that, then you’re setting yourself up for failure already. That is one thing that stuck with me. I had to keep trying until something worked. For me that meant trying natural stuff until it worked. I admit that as time kept passing by, I did run into doubts, but I just kept plugging away anyway. Fortunately, for me, it did work.
Oh, and about people continuing to poison themselves! Yep, that was another thing I thought about. People don’t want to change their lives. They want to just take a pill and continue on doing what they’ve always done. You would think that getting “seriously” ill would give the person a hint that they need to make changes. The path they were traveling allowed them to get so seriously sick. Perhaps they should “change” their path. But instead, they want a quick fix and continue doing whatever they were doing that allowed them to get sick in the first place. Why should God peform a miracle healing in people like that? Sometimes I don’t think people think about what it is they are asking of God. When I was very transfusion dependent, I was getting poked left and right and boy was I getting needle phobia. I remember praying to God please let the nurse be good at inserting IVs. Then I would “trust” that all would go well. But lo and behold I would get the worst nurse and she would shish kabob me and miss my veins. I didn’t understand why it seemed God wasn’t listening to me. While reading the Bible I found the verse in James,”You ask and do not receive, because you ask amiss, that you may spend it on your pleasures.” I started to “think” about what it was I was asking, that perhaps my prayers were not right. I realized I had to do things for my veins and speak up for what I needed. I had to ask for the good nurses. I had to learn which veins were easy to access and exercise my arms so the veins would plump up, etc. I had to do what I could and not just expect good things to happen. Then things went well for me.
So much to talk about! I’m glad to hear the things you’ve learned. It does give me another perspective and more understand. Thanks!
Andrea! What a story about your lump! (And welcome back, too! I’m glad you had a nice trip. Where did you sail?) 18 months! You were persistent! Good for you! Patience really is a virtue! And it paid off for you.
I was wondering if that person you know with the lymphoma has a website? Would be nice to be able to follow along with how he’s progressing. Would be interested to know what he has been doing for himself. Tumor growths are scary. I’ve heard different things about them, tho, and have heard that it is common for them to get bigger before they get smaller. If you check out Lorraine Day, M.D.’s site at http://www.drday.com you can see the size her tumor got. Yikes! It started out really small, but then grew like crazy in a matter of a week or two. It was pretty big! She did have it excised because of the size and pain, but no radiation or chemo. Also when you read some literature on tumors, you’ll find that some people don’t believe that tumor size or shrinkage is a very good indicator of improvement or extension of life. I think they’re referring to tumor shrinkage via chemo and/or radiation. I read of people’s tumor’s shrinking via those methods, but the tumor coming right back in full force or they end up dying anyway from other complications or metastases.
I’ll try to find that book you mentioned! Thanks for the reference!
Take care!
Marla
Andrea said,
September 4, 2006 at 1:21 pm
Hi Marla–First, about the book “Creating Health”–to tell the truth, as I remember it’s not that great a book. But what it did do for me, was started me thinking about “creating health” as opposed to fighting disease. And reading a lot of books about health, and finding the places where they all agreed. So don’t wear yourself out looking for it, though it may have some decent insights.
Second, the “floodplains of Jordan” Bible verse–I printed that out from your website and read it aloud to Rob every morning during the darkest days last fall and winter. It was a great support to me too, with its commandment to be strong.
“Work until something works.” That’s definitely the ticket, right there. Do not, do not do not give up. Do not give in to chemo or radiation if it comes from a spirit of fear. This is true of so many other areas of life, as well. As a piano teacher, I know that you must never never give up on a kid learning something. You just keep trying new methods, you keep on keeping on — and the rewards when you and the kid succeed are tremendous.
Rob has said to me a number of times, “I have learned from this that all healing is spiritual.” He also has said, “I’m not getting well–I’m not getting the Old Rob well. I’m creating an entirely new Rob.” He sees his illness as a commandment from God to completely transform his life, his ways of thinking, his ways of doing things.
He was a chronic worrier, and thoroughly addicted to overwork. He is shedding these qualities like old skin. That’s where the real healing is for him. It’s not easy, but it is deeply good.
************
We sailed around Casco Bay–anchored at a beautiful beautiful public island about 2 hours away, rowed in every day, hiked, napped, read, prayed, and just loved it! . . . I’m going to try to make a website and i’ll post picures when I do.
**********
The guy with lymphoma, Steven Le Blanc, does have a website I think I heard, but I was unable to google it up . . . I’ll find out from his friends where it is and let you know–great idea to follow what he’s doing. And I agree–when there are “failures” in natural medicine, painful though they may be, I think they should stay available to us all. We can learn from them, better than from the successes I think.
Gotta go, Andrea
PS–I try to find the line between “judgement” (which I see as condemning and prideful) and “discernment” (gentler and with the understanding that it could just as easily be us being jerks or whatever). “Discernment” helps us decide who to hang with.
Patti said,
September 4, 2006 at 10:04 pm
Marla,
Real quick answer to your question about my niece and being genetic tested. Yes, they did actual genetic testing. Since her mom had died so young of cancer and Jessica showed up with it so young they decided that would be a “wise” thing to do. Her brother that tested positive for the same gene had a vasectomy at 21 because he said he never wanted to pass that on to his kids. I guess after watching his mom and his sister it was more then he could handle. I watched my sister care for her step-daughter (Jessica only knew her as mom because she was so young) for years and it was heart breaking. My sister is a rock and she had studied in the medical field so was very knowledgable. Her dad is SDA and my sister struggled with his requiring Jess to be a vegitarian because she felt like it was hurting her health. Everyone once in awhile when she was in the hospital in Portland (they lived 4hrs from here) my sister would start passing her meat to try and get her to gain weight. She was 11yrs old and weighed only 45 lbs when she died.
I gotta scoot. Still much business to do tonight before bed. Mom has appts. tomorrow.
patti
Patti said,
September 5, 2006 at 7:18 pm
Marla,
I answered this last night and it’s still not here.
It seems I can post on the Chronicles page with no trouble but anyplace else seems to not like me. 
Patti
Patti said,
September 5, 2006 at 8:26 pm
Okay, that’s not supposed to be a smiley face there. Fumble fingers.
Patti said,
September 6, 2006 at 1:58 am
Okay, now my post showed up. Did you put it there or did it just take two days to get there? I think your blog doesn’t like me because I’m so far behind answering everything right now. I keep waiting for the time to get to the God post and it’s not happening. I think I’m just going to have to purpose to get it done. Make the time for it. Because I think it’s so important.
I can’t sleep again. My cortisol is all out of whack again. Low during the day, high at night. My naturopath says it SAD kicking in because of less daylight. I told her I know my body too well and this is energy kicking in after 6:00pm because my cortisol is out of whack. I’m having another saliva test done so we shall see. I am discovering that you can’t even really put your trust fully in a naturopath. We are the only ones that truly know our bodies (besides God).
Patti
Administrator said,
September 6, 2006 at 6:21 pm
Hi Andrea:
That’s neat to know that you and Rob were able to find comfort in the same Bible passage. That one just sang to me for some reason as did others, but that was one of my favorites.
And what you said about getting the “old” Rob back, that reminds me of something I read regarding how long it takes for all the cells in our bodies to renew. I know different parts renew at different rates, but basically what I read was that it takes about a year for all the cells in the body to change over. Now, I don’t know how accurate that is, but that made me think that the cells that make up us today aren’t the same ones that we had years ago like when we were in high school. Everything is replaced, and even our bones are continually remodelling, breaking down and being built up again. One of the curious things for me is how it is that we still have the same appearance or very similar appearance as years ago. Do you know what I mean? Like how is it that the new cells that come back “know” how to hold the right form or look? Anyway, just some things that run through my mind sometimes! Ha ha!
I look forward to seeing your website! Definitely let me know when it’s done.
Oh, and if you ever find La Blanc’s website, please let me know, too. I would be interested in following along.
Patti, Patti, Patti. . . my spam filter hasn’t been misbehaving! Ha ha! This time I don’t think it’s on my end. But I will keep my peepers open in case.
Now that cancer gene interests me. What else do you know about this cancer gene? I’ve heard that a small percentage of cancers are genetic, but I don’t know much else about that. Like are there specific types of cancers that are linked to that gene? Or just any types of cancers? Where are these genes found? What kind of mutation do they see? Will have to add that to my list of things to look in to.
What is SDA?
Sorry to hear that your cortisol is out of whack. I’ve been sleeping much better lately, but don’t know how long it will last. We’ll see. I’m with you regarding the naturopaths. I’ve found the same thing that I don’t always agree with every recommendation they make. Course I don’t know many! I’ve only been to one, but I’ve heard of the recommendations for others. The one I had years ago put me on so many pills that I couldn’t stand it! Ack! I actually prefer reading the books they make, and I suppose if I had lots of money, I wouldn’t mind visiting them some, but I prefer not to.
What is your SAD kicking in? The only thing that comes to mind with SAD is Standard American Diet. Ha ha ha. But somehow I don’t think that’s what you mean. . .
Okay toodles!
Marla
Andrea said,
September 7, 2006 at 6:27 pm
Hi Marla, Still trying to track down Steve LeBlanc’s website. Everyone agrees he has one, but no one seems to be able to find the link. I’ll be breakfasting with one of his closer friends tomorrow, I’ll see what I can come up with.
What is it about that “floodplains of Jordan” line? It still gets to me, just thinking about it.
I had heard differently–that it actually takes SEVEN years to completely remake our bodies.
‘Night! Andrea
Jen Backus said,
September 9, 2006 at 12:21 pm
Andrea and Marla,
I wonder about the speculation of cells reforming our bodies. Especially in light of Samuel’s body. About a year off any major chemo treatment, he still is not normal as far as the bone marrow is concerned. IME, Oncs really have no clue what to expect from post treatment tests. Come Feb of 2007, he will have been off all chemo for a year so I guess that will be a good time to redo the marrow studies to see where we are at. Any other info on this subject would be appreciated. I guess I would not be surprised if it actually took 7 years to rebuild expecially after such devastating things as chemo/radiation.
Thanks for the great discussions and interesting info.
You can find us at http://www.momandmepouch.com/Samuel.html
Best Wishes
Jen
Administrator said,
September 9, 2006 at 6:39 pm
Yeah, I had my suspicions that it might take more than a year, too, and that’s why I said that I’m not sure if it’s true or not. I just remember reading that 1 year estimate early on in my research, but afterwards I learned that there are other cells that may last longer such as some cells in the brain. Also, I’ve read about lymphocyctes living for years, sometimes as long as 10 or more years, but again, it wasn’t clear whether they were the “same” lymphocyctes or next generation lymphocytes of which their immune *memory* was transfered over. And from my own health experience, I also have taken longer than just one year. However, I hadn’t read any other estimated time frame, but do think that it is likely that it is true that all our cells do turn over completely, eventually.
Another thing to consider is that in *healthy* people cells may be replaced faster, AND with new healthy cells. A person who isn’t so healthy may have slower regeneration AND possibly the new cells that are formed aren’t as robust or healthy as they should be. So in that case, I would think that may be a reason why it takes longer than a year, and possibly 7 or more years to fully heal. What I have heard about is Herring’s Law of Cure. Again, I don’t know how accurate he was, but his assertion was that for every year you were sick, it takes about a month to heal. I don’t know how that would fit in with aplastic anemia or leukemia since these diseases *seem* to just happen over night. Perhaps Herring was referring to chronic conditions like eczema or something like that where people have had them for years and years. He claims that healing goes in reverse order as it appeared. Again, I have no idea if he’s right about that, but his ideas are *part* of the reasoning behind healing reactions.
The regeneration thing has interested me, and so I’ve tried to look a bit into it in the past. What caught my interest was liver regeneration. People quote different regeneration rates like someone on one of the forums I was on stated that the liver regenerates every month! But I had a problem with that because I know there are lots of people with liver cirrhosis whose liver doesn’t renew. So I looked into live liver donors, where their livers regenerate pretty quickly (they usually take more than 1/2 of the donor’s liver), and the *receipient* of the liver regenerates even faster than the donor’s liver. The usual time frame is less than a year. And *some* liver *donors* never regenerate a full liver back, but close to it. I found that very interesting. In that case, it showed me that even if our cells *normally* regenerate, it has to be under the right conditions. For instance, there is a mechanism which operates in the liver which *signals* regeneration to occur, but things like ethanol *prevent* liver regeneration. So I was thinking that a similar process goes on with other cells in our bodies. Our bodies have to have the right tools to properly rebuild and replace old cells. Thus the nutritional status of our bodies and other things we do for our bodies probably determines whether we encourage the formation of new, healthy cells, or if we continue to form bad cells or mediocre cells, etc.
So that brings me to detox. If ethanol *prevents* the liver cells from regenerating, then I imagine other cells can work similarly. So if there is something *preventing* regeneration, then we need to find out how to get that out of the way.
Hope this makes some sense. Just some of my initial thoughts, tho.
I did read a book called The Body Electric. I found that pretty interesting regarding regeneration. I do believe the body is capable of a lot more regeneration than is commonly accepted. The Body Electric suggests that proper *stimulation* is required. That’s another thing to consider.
Okay, better get to dinner!
Marla
Patti said,
September 9, 2006 at 10:11 pm
Hi ladies,
Life’s been a little hectic so haven’t been able to write in much. Marla, the cancer gene thing is weird. I guess when Jessica’s mom died they did gene studies on her to see what caused her cancer. Her husband being a doctor and all I guess he was okay with that. All I know is that whatever gene mutation she had, Jess had and at least one of the boys. The other two boys do not know. One killed himself over the whole thing (over his mom and sister and the poss. that he might have the gene) and the other just turned 18 and hasn’t been tested. From my understanding, the gene could cause any kind of cancer. It was an equal opportunity mutation. Have no idea where they found the gene – human genome?
I just know that Jess started with adrenal cancer at 4, bone cancer at 6 and leukemia at 9. Each time they would get a cancer in “remission” for about a year and another would pop up somewhere else. After they found out she had the leukemia they fought it for awhile and she went into remission. She relapsed around the end of age 10 and they stopped treating her with platelets etc. when they weren’t lasting but 3 days or so. Also, they were told she wouldn’t live past her teens because the massive growth of puberty would cause cancers to grow all over her body. That was another reason they stopped treatment. They’d just decided she’d had enough.
SDA is Seventh Day Adventist. Sister’s hubby is strict vegetarian, sister is a closet meat eater! Hee, I like that – Standard American Diet! SAD is supposed to be Seasonal Affective Disorder. Okay, hello, I know my body and this is NOT the problem. It’s not even cold and rainy here yet. My cortisol is sooooo messed up that my body thinks day is nighttime and night is daytime. I can fall asleep around 4:00am and I’m up at 8:00am and have been going all day on that for a few weeks. I think today I finally decided that the last time my naturopath made a change to my chinese herbs I started having problems. I know she won’t agree with me so I’m just going to have to fight this out with her. I have tried not taking the herbs and it doesn’t seem to matter re: the sleep so that may only be a portion of the issue. I’m supposed to get another saliva test done and I know that will show my cortisol all over the board. I would give anything for a natural way to increase cortisol. I take an adrenal glandular to help my adrenals which you would think would fix this but my adrenals are so shot they are very close to Addisons Disease. I am that close to shutting down.
Jen, I look forward to reading about your journey with your son and understanding a little more what you’ve been through. After watching my sister, I can’t imagine…….
My husband and I had a long chat about what we’d do if either of us gets a major illness and I think he hands down has said that we will not use traditional medicine. Between what we’ve read here and what we’ve seen with mom, it would almost seer (sp?) our conscience to do any different.
Okay, better get off to bed and try and make up for too many lost hours this past week.
Patti
Andrea said,
September 10, 2006 at 11:34 am
Wow, a nephew of yours literally killed himself over the cancer gene! Does that say something about the ethics of disseminating this information? That’s so tragic.
Patti, that’s really too bad about your sleep problems. As if you don’t have enough to worry about. I wish I knew more about sleep and could be of help. I don’t even know what cortisol is.
I have to agree with you about not using allopathic medicine for chronic diseases. It just doesn’t work very well.
Andrea
Andrea said,
September 10, 2006 at 11:38 am
Also wanted to mention I went to your web site,Jen, and all I can say is, wow. I don’t know how you’ve done it and keep the faith but you have.
The interesting thing about the 7-year thing is this–at about 7 kids change from cute little kids to school-age kids, they get a new set of molars, start to read etc.
At about 14, they become teens–a whole new angle on life.
And at 21, we let them drink. Why 21? Is there an intuitive sense that yes, that’s when they’re completely remade, into adults.
I had no idea a liver would regenerate, Marla!! That’s very exciting to me. The body is so much more intelligent and able than I had thought.
Andrea
Jen Backus said,
September 10, 2006 at 11:05 pm
Andrea,
Thanks for the study on the seven year metamorphosis. That was pretty cool and something I never thought about, but makes good sense. That gives me a lot of hope for Samuel’s body to restore itself. Our Onc told me he thought that the one year mark would be the new “baseline.” So it is good to be of the opinion that we are still working toward the baseline. Even at 6 months or so off treatment, Samuel still had “abmormal cells” in his marrow. Thankfully we just decided to stop looking for them after two months in a row of seeing these cells.
Going with the seven year thing, at 28 I think I finally “felt” like an adult who could make my own decisions without advice from family. I wonder what 35 has to offer, not there yet. 42…menopause? Hmm.
Well, anyway, that was a very interesting perspective which I will definitely ponder more.
Patti,
I hope you never have to make a decision about cancer treatment for a child because in the US, you really have two choices, to treat with conventional drugs or to have CPS come and take your child and treat without your consent. I know of one family whose daughter had leukemia, went through a few months of treatment, then they walked away and did alternatives. She relapsed and they did the same thing. She relapsed again and they ended up with a bone marrow transplant. She is doing well, but does have many side effects….so I hope the seven year thing will work in her favor. But I am not sure of how they were able to get away from treatment without CPS geting involved in some way and that part of their journey is not shared on their current blog. A “support”:group for ALL kids I was on had a complete fit about what horrible parents they were to do this to her and that is how I found out about them.
It is possible to get out of conventional treatment and I do doccument every step we have gone through to get out. Not to mention having drugs dropped from protocols or skipping complete months of treatment to save my child from more forrific side effects or death. It is possible to do these things if you get an Onc with some compassion and a brain. I have found this type of Onc few and far between. I cannot tell you how many times we SAVED Samuel’s life by adamantly refusing to treat because we knew we had a problem brewing. Example, Samuel’s hydrocephalus creeped up on us. We knew something was wrong, but did not know what. Our Oncologist at that time was all set to come in and do a spinal tap with chemo and thankfully we stopped them telling them they needed to figure out why he could no longer move or talk. Once the hydrocephalus was diagnosed, that same Onc said he was so glad we were there because had he done it, it would have killed Samuel instantly and we would have never known why. On top of that, he came in and said he noticed that Samuel did not cry like he usually did…..but had we not been there at that very monent, this would have been done and he would be gone. So, even when you are forced into treatment, you have choices, you just need to be proactive and make them because if you just leave your child in their hands, they will do whatever their protocol says regardless of the how the child looks or acts. Bottom line, even if you are forced into treatment, you do have choices if you can find an Onc who will work with you and your choices. It is very difficult, but not impossible.
Best Wishes.
Jen
Administrator said,
September 11, 2006 at 9:18 am
Hi Andrea:
Yes, the liver is one of the organs that has been clearly observed to regenerate. (Others are skin and bone marrow). For that reason, they are able to have “live” liver donors where they take up to 60% of the donor’s liver, which eventually grows back. They also use cadavers for transplantation. One liver can be cut up to about 8 pieces. Here’s a little excerpt regarding reduced-size liver transplantation:
“Reduced-size liver transplantation puts part of a donor liver into a patient. A liver can actually be divided into eight pieces—each supplied by a different set of blood vessels. In the past, just two of these sections have been enough to save a patient suffering from liver failure, especially if it is a child. It is possible, therefore, to transplant one liver into at least two patients and to transplant part of a liver from a living donor—and for both the donor and recipients to survive. Liver tissue grows to accommodate its job provided that the organ is large enough initially. Patients have survived with only 15–20% of their original liver intact, assuming that that portion was healthy from the beginning.”
http://www.answers.com/topic/liver-transplantation-surgical-term
So, Patti, if you’re reading this, you can see a bit of what we were discussing about liver function. A person can have lots of liver damage, and still not know it “clinically.” I have found it amazing how God has given us so much. For instance, normal hgb for females start at 12, but we can go all the way down to 8, and still function pretty well. That’s 4 whole extra units of blood. Same with white cells, platelets, and really much of our bodies. I really think that many people aren’t as healthy as they “think” they are because we can still function fairly well even though our organs are not at 100%. It’s only when we cross that threshold where the body/organs can’t handle the burden that we start to actually see and feel the clinical results. Other examples are the kidneys. They have live kidney donors because you can give up one full kidney and still be able to function well. I’ve read that a person won’t really have to go the dialysis until they’ve already lost about 90% of their kidney function. The brain is similar. I read from Blaylock that it’s only when you have lost about 80% brain function that you start to “see” clinical symptoms of alzheimers or parkinson’s. Another example is one of my uncles. He had a heart test done (you know the treadmill type and all), then “two” weeks later he had a heart attack for which he underwent bypass surgery. My sister who is an RN said that it makes sense because they can’t always tell there is something wrong until it’s “already happening.” Yikes. And that is why I think we likely have lots of room for improvement.
Regarding the 7 year thing, that is interesting. The question I have though is different cultures assign different ages for level of maturity. For instance in India girls get married at 13-years-old. I think in Canada 14 year olds legally obtain the rights our 18-year-olds get. I think Jewish bar mitzvahs is when a 13-year-old boy comes of age for religious duties. Mexicans have their coming of age for girls at 15 while Americans have the sweet 16 for their girls. Filipinos do it at 18 for their girls. The numbers “seem” to be assigned culturally, and I don’t know how arbitrary that is. Biologically kids go through puberty is a range of ages, some girls starting menstruation at 10 while others don’t start until 16 or so. Then I look at the people in the Bible and see how old they were and what they were doing. . . now THAT has been an interesting topic to explore. Moses’ life seemed to be divided in 3 significant parts by 40 year sections. I’m thinking that the development of a person is greatly influenced by culture and personal environment. The metamorphosis or development of children to adults is an interesting one to explore, and also considering some people seem to age faster than others makes one wonder why that is.
Patti: There was a recent book published on cortisol. Gee, I’m gonna have to dig deep in my memory to remember what it said! Or maybe I can hunt down the name and check out a copy from the library again. Do you think you’re high or low? Those levels “definitely” affect your stress level and tolerance. Glad that you’re on top of it and know you have to work on it. If I can get a hold of that book again, I’ll let you know what his recommendations or for balancing cortisol. (Andrea, cortisol is a hormone that is released by the adrenal glands and can also involve the functioning of the pituitary gland). I’m sure all the stress you’re having with your MIL and family life is putting extra burden on you. I know you have the same adrenal book I have. I’m not sure which herbs you’re taking, but I have tried some from Herb Pharm and Gaia herbs which seemed to do well for me.
Thanks for sharing your thoughts regarding discussions with your husband and illnesses. It is good to know how other people are handling things. That way like-minded people can encourage each other and help share information.
Jen: I kinda lost why those other forum people thought they were terrible parents? What did they do? You said they gave their daughter a BMT. Those people didn’t want her to have one? That’s unusual.
I do think kids have the advantage of healing with time, however, I’m of the persuasion that we should help the healing along rather than just waiting with time. Time is a big factor, but as an example, people who have strokes can recover with physical therapy. It is fairly known that the sooner you start physical therapy after a stroke the greater your chances are of recovering. The longer you wait to do physical therapy after a stroke the more difficult it gets to overcome the damage and paralysis.
Well, I’d better get on with the day! Chat with you ladies later!
Marla
Jen Backus said,
September 11, 2006 at 10:05 am
Marla,
They thought this family was horrible because they did not understand why they would pull her from the oritginal treatment which had a 75% “cure” rate. Instead, they pulled her a few months into it and she relapsed, as would be expected. So relapse treatment is harder than the original protocol and she did that a few moths and stopped. Then she relapsed again and they were forced into a BMT. Basically they treated long enough to get her into a clinical remission and then stopped chemo and went to alt treatments. They bought her a few years this way before the BMT was needed. In the opinion of this group, they could have spared her a BMT and the horrible side effects from that if they had stayed on the original protocol in the first place. They were “bad parents” for not getting her cured right the first time…..at least in the opinion of this group.
HTH.
Andrea said,
September 11, 2006 at 12:27 pm
Hi Patti, I was interested to learn from Marla about cortisol and that it can be affected by stress. Um, you’ve certainly got a bit of stress in your life.
Have you pursued any relaxation tapes or methods? Our oncologists’ office offers relaxation tapes during chemo, or to take home.
When the stress got really really bad with Rob last fall, I turned to my trusty yoga book and, lo and behold, there were a series of postures for “stress.” Well i felt like I was going to go crazy so I figured that qualified. I did the postures (in the hospital room) and–wow!–it really really worked.
Here’s another remarkable thing–I know that you, too, listen for the voice of God, for guidance. I had been too wound up to hear it, and then after the postures, I could again. . . that still, small voice.
Another thing that popped into my mind concerning your sleep issues is melatonin. Seems to me that it can re-regulate the biological clock issues like you seem to have.
Well, gotta go!
Andrea
Patti said,
September 11, 2006 at 8:06 pm
Hi ladies,
I am learning so much for you all that I don’t even know where to start. Jen, I had a chance to read some of Samuel’s updates and his story. All I can say is, “wow.” You guys have sure been through the fire. But I can see so clearly why you made the decisions that you made and how they were definately in Samuel’s best interest. For all of the trouble we’ve had finding an onc. that would just leave my MIL alone about drugs and chemo, I cannot imagine the difficulty finding a child onc. that would be that accomodating. Does Samuel have an onc. that will listen to you and your husband? I didn’t get to read every update. Just his story and the most recent updates.
What happened to that young man back east who had Hodgkins is exactly what I picture happening to a parent who chooses alternative treatments for their child. I guess my intial thought is that as soon as a diagnosis is made I’d probably try and tell the person who made the diagnosis I wanted to get a second opinion and then not do it but start treating my way. I’m sure they’d catch up with me eventually but to start that’s probably what I’d do. I also know my husband isn’t afraid to move to another state to escape the nazi’s if needed. Sorry if that term offends anyone, but I really do see the invasion in our private lives as that way.
The liver stuff gives me a whole new perspective. Even makes me worry less! That is always a good thing.
Jen, you’re not at 35 yet? I’m 36 and man do I feel different! I had my first baby at 28 and my last at 31 and whoa, what a difference. Maybe because my health isn’t where I’d like it to be, but the energy level thing is huge. The 40 thing is interesting because my naturopath says that definately at 40 all people undergo some sort of change in their bodies. For my sister, she could no longer exercise 6 days a week. She had to go to 3 days a week just to recover. She also gained weight that she’d never had trouble with before. So, there is something to the 40 thing.
Marla, my adrenal issues actually started when I was kid but I didn’t understand and see that until I was an adult. I underwent a tremendous amount of stress during all of my growing up years and when I was in college I would literally sleep 12hrs a day. My sorority sisters could never understand that. Ever tried passing classes on 12hrs of sleep a day? It seemed like through my 20’s I had a handle on the low cortisol because I was exercising like crazy. I did well until I got the pancreatitis when I was pregnant with my last and that was all she wrote. My adrenals died at that point. They had undergone all the stress they could and couldn’t take anymore. Unfortunately, it took us 4 yrs and multiple doctors to finally figure out what was wrong with me. One wanted me to have a pituitary tumor, one wanted to put me on anti-depressants and two knew I had adrenal issues. I’m adrenally insufficient. Almost to the point of Addison’s disease. Which could still happen if I don’t get this fixed naturally. I do take some supplements for the adrenals but right now my main focus is an adrenal glandular called Isocort because they’re really too bad for herbs to work well right now. Between the glandular and some herbs I do feel better but not anywhere near where I should be. And definately, the stress right now is not making my hormones any better. I like how my naturopath put it. She said at this point she feels like she’s just propping me up until this is all over. Kind of like adding water in one side and just trying to keep it all from leaking out the other.
Andrea, I use reading for my relaxing. Lots before bed. I slept last night!!!! All night. Made me wonder if it was cycle hormones creating havic this last week or two. We are in the process of getting me off of bio-identical progesterone and I wonder if that’s some of the issue. Hoping I’ll sleep just as well tonight.
If I do, I’m going to assume it was cycle hormones creating the problem. I know my whole hormone system is messed up starting with the pituitary. That’s what my naturopath has been spending her time trying to work on. The whole hormonal system. I do have a partially empty sella but no one seems to think that’s an issue so, go figure.
Well, time to get the kids off to bed. Nice chatting with you ladies.
Patti
Patti said,
September 12, 2006 at 11:06 pm
Marla and Andrea,
I finally got posted under the healing and God topic. Sorry it took so long.
I had to study between life’s happenings. But it was worth it. Reminded me of just how much Christ did for me when I was so unworthy of him.
Okay, hope it clarified my thoughts (or it will have confused everyone further!).
Patti
Andrea said,
September 16, 2006 at 1:07 pm
Hi Jen–Regarding the 7-year thing, yes, I think that is real cause for hope. We can think of Samuel’s healing as a Long Term Project. God’s time tends to be slow compared to what we humans always want. But look what can happen, with time, prayer, faith, and of course, hard work! Oak trees, for example.
There’s a saying, “The moon moves slowly, but she crosses the sky.” I love that.
Rob often feels impatient with his healing. He’s always been able to turn out a lot of work in a day, it’s been a year, why are his counts not yet normal?
But a year in God’s time is nothing. And Rob is learning patience.
There is so much cause for hope in Samuel’s situation. The fact that you have taken responsibility for his healing is such a big step.
Blessings, Andrea