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Holistic tx only--what Ive done

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  • elainetherese
    elainetherese Member Posts: 1,628
    edited June 2020
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    Yes, it certainly does feel good to just cut loose sometimes! Wishing you many pain-free days ahead.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited June 2020
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    Good to hear from you but wish the scans had been different. You have a very sensible attitude and one that will make the time to come easier. Just do what you to do to keep your pain in check.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2020
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    Reporting back in and wow do I have a crazy story. I kind of feel like an idiot but in a good way. The truth is, that after the first couple of months past my dx, seven years ago, I stopped reading up on conventional tx plans and focused exclusively on alternative methods of healing because I simply couldn’t face the idea of chemo, surgery, or radiation. Yes, I’m a coward and I can finally admit that.

    After I got settled in here at my place, my friend talked me into getting the scans and that naturally led to me seeing an oncologist, though I figured it was too late and I was going down fast...weird debilitating backaches and full days in bed sometimes, though I’d been hiking five or more miles a day just months before. I figured it was just a matter of months for me if not weeks but the oncologist laughed at me and said, “nobody dies from bone cancer! You’ve got years if you listen to me.” He said that my alternative plan must’ve worked out well because it’s highly unusual for anyone to make it to seven years without conventional tx, and he just wanted to put me on letrozole and we’d see how it goes. I said yes and got on the pills and never missed a dose and the tumors began to quickly shrink and my energy came back in a week and next thing you know I’m out working in the garden and became a fanatic and I’m taking a master gardener class and helping a neighbor with hers too because I can’t get enough! From death into life...the garden is a true metaphor.

    Ive been on the letrozole for about 2-1/2 months and saw the oncologist the other day and he was absolutely thrilled and said there must be something good going on with my immune system and maybe it’s the alternative and I’m thinking it’s the metformin and statin I added to the mix, along with some other supplements I take. I’m just really glad he is open to this, though I figure he’s got my number and figures if he doesn’t encourage me in this that he’ll lose a customer. And the craziest part? I have more energy now than I had twenty years ago, though that may be due to the fact that I struggled for so long to keep my iron levels up.

    However, please pray for me in this if you are so inclined....I’m really struggling with the sugar addiction and it’s a full on eating disorder due to the fact that I can’t stop once I’ve started and I was doing so well with that for years but gradually I just kept sneaking little treats and it got to be more and more. My tumors are still shrinking but that may stop if I don’t get a handle on this.

  • cowgirl13
    cowgirl13 Member Posts: 777
    edited September 2020
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    pipers, it's so nice to hear from you and good to know that your health is returning. Take care.

  • jelson
    jelson Member Posts: 622
    edited September 2020
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    pipers_dream-

    been following your posts for years. so very glad that you are thriving after feeling so poorly just months ago. you have fought and won other battles, you will kick sugar to the curb.


  • brigid_to
    brigid_to Member Posts: 22
    edited September 2020
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    That's a great report back pipers! I'm glad to hear you are feeling better and out in the garden doing what you love. Don't be too hard on yourself with the sugar-it will happen.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2020
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    Thank you Cowgirl, Jelson, and Ingrid for your kind words. Yes, I can beat this addiction but I do know one thing and that’s that I don’t judge other people for having addictions either, whether they may be alcohol or gambling or even heroin. Life is hard and we all deal with it the best we can.

    I forgot to tell you all the best part. Almost exactly one month after I got the good news and was feeling much better, the love of my life reached out to see if I’m still single and I am. He is still married, only separated, and lives five hours away so we are not dating, but we’ve sure had some great phone conversations and we are both hopeful that we will end up together one day. How’s that for a turnaround? I’ve been single for almost 12 years and not always happily so I’m very excited as he’s the one I’ve always loved the best. Maybe the sun moon and stars are finally beginning to align. Fingers crossed.

  • elainetherese
    elainetherese Member Posts: 1,628
    edited September 2020
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    pipers_dream,

    What awesome news about your improving health and your gardening! Yes, addictions are challenging, no matter what the substance. We all have weaknesses for some things/behaviors that aren't good for us, so yes, no need to judge anyone. Hope you continue to have great conversations with the love of your life, and who knows? maybe something more!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited September 2020
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    I was so happy to read your update on both the medical and personal fronts. I have a solitary bone met and have been on one of the AI’s or another as my only tx for 9 years and remain NEAD. I have never done IV chemo though I did have rads to the bone met. It’s amazing what one tiny pill can do. Stay well and happy

  • everythingwillbefine
    everythingwillbefine Member Posts: 35
    edited September 2020
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    piper! I read through this thread and so impressed about your frankness and braveness. I am so happy to hear your improved health and the love story too. You are such an amazing lady! I admire your courage of trying the alternative route. I think at this time combining the conventional treatment and the alternative would give you the best outcome! I hope that you will continue down this path and continue improving and I like to hear from you 30 years from now reporting you are over 90 and still doing great! :

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited September 2020
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    Piper,

    I should mention that I have bone mets only. Not bone cancer, but bc that has metastasized to the bones. I have lead a virtually normal life for 9 years without progression. I have used only conventional txbut lead a healthy, though not rigid or compulsive, lifestyle. While I can understand that this could change in a heartbeat, there is reason for optimism. I can honestly say that 9 years ago there were very few on this forum who had survived so long. Now? Not as many as I would wish but definitely more of us.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2020
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    oh I so appreciate the support of you lovely ladies....it means a lot. And yes everythingwillbefine, I actually do believe that a combination of alternative and conventional is probably the best way for most of us, and the least we should do is fix our diet if it needs fixing and work out methods to deal with stress and past trauma. And yes exbrnxgirl, I don’t think it’s a good idea to be compulse either because that is so difficult to maintain.

    I think I mentioned it on here before, but one of the things I did that really helped was to write a very long letter to my father and it was filled with rage and then I burned it and all that rage that was bottled up is just gone and I can remember the things I loved best about him. Honestly he wasn’t that bad of a man but he emotionally abandoned me when I was a young teen and it took me a long time to realize how harmful that was. I felt light as a feather after that letter was burned, and incidentally, it was Qi gong class that stirred all that up so I could get it out

    It’s also occurred to me that I can write a similar letter to nonhuman issues I’m struggling with, like the sugar addiction, but I haven’t done that yet. I’ll get back with you all if I do.

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited October 2020
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    Thank you for taking time to update I’m so happy you are feeling so much better !

  • pipers_dream
    pipers_dream Member Posts: 187
    edited August 2021
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    Warning: this will be extremely depressing. If you’re not feeling so well yourself, maybe you should skip it.

    Checking back in and the news is much less optimistic. I moved at the beginning of the year to southern IL and I love it here...the natural beauty is incredible and I found a house that I adore that’s compatible with my spirit. I was doing so well.

    Then because I had started to eat the sweets again and the addiction gained momentum....picture a lung cancer patient starting to smoke again...yeah it was bad and I could not gain control of the thing. I began to feel bad again and called my oncologist and he sent me for a pet scan only to find that my bone Mets were worse than before. He prescribed Ibrance and I am on the second month and I feel terrible. My pain days gained in frequency and intensity so I called him back and he said stay the course. Oh yeah, and due to insurance issues I had to switch docs in the middle of this crisis and that doc told me to stay the course too, but the packet insert said to call the doc if symptoms are not improving or are getting worse. Well they are much worse and neither doc will call me back.

    Also, my emotional health is in the dust right now. I’m back to distancing and masking up and went to a lunch place today with my mask on and my friends and I were the only ones masked up. One woman stared at me with pure venom and I assumed it was because of my mask. No telling but it was southern Missouri where few choose to vaccinate and no one wears a mask. Ouch.

    Then the insurance woes. The fact that I owe my oncologist $18,000 for four office visits and one pet scan. The fact that I’m either in pain or have profound fatigue most days and I don’t even have my house together yet. I try to get at least something done every day so I can feel good about myself as I’m trying really hard to not wallow in self pity but after a day spent on the phone yesterday dealing with insurance/billing/finding a new doctor etc, I’m wallering in the pigsty.

    And I came to this conclusion. I’ve reached the point where my quality of life is gone. I’m wondering what the point is of buying extra months for my life when all I can do is stare at the walls and feel so all alone. This is not the way I wanted to go out. I think I’m going to stop the ibrance.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited August 2021
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    My dear piper’s,

    I have never said this to anyone on bco before… I am holding your hand or hugging you or whatever you might need right now. This is certainly a time when you need to listen to your inner voice. I know you will find the best direction for yourself. That being said, have you looked into palliative care for pain relief? Or do you think it’s the Ibrance causing the pain (not familiar with Ibrance) ? Either way, you should not have to be in pain. Take good care my friend 💗

  • pipers_dream
    pipers_dream Member Posts: 187
    edited August 2021
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    oh sweetie exbronxgirl...I hoped you’d chime in and your message immediately raised my spirits. I’d like a hug and my hand held too.Happy

    The pain I’m feeling is just like the pain I had when my bone Mets were growing but it’s gained in intensity. Like I’d say it never went over a two or three before the ibarance but now it’s hitting a six, so still not unbearable but I’m pretty sure that’s not supposed to happen. The info packet with the ibrance said that you should call the doc if symptoms get worse or fail to improve. I mean, you expect to feel fatigue and nausea and General lousiness but I don’t think I’m supposed to feel this. I’m experimenting with cannabis and Advil to control pain and that’s kept it to a full roar. I finish this cycle on Wed and thenI am exploring the idea of asking the doc to make me comfortable. I’m wondering if I should even stay the course till Wednesday. And then I wonder, if I were to really hit it with my alternative routine, maybe I’d buy more time and quality time at that. I did go back off the sweets when I started feeling bad because I realized immediately that if I didn’t I’d not get better and why fight the medicine? Indeed.

  • Esther01
    Esther01 Member Posts: 229
    edited August 2021
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    Pipers,

    I'm sending you another [Hug] as well. I love how honest you are about how you're feeling about all of this, and I hate terribly that you're in pain. I've learned from xbrnxgirl's posts to know that she has a heart of gold and a lot of wisdom. I'm glad you have such loving support here. Please add me to your support list as I will be cheering you on, too.

    Love and blessings,

    Esther

    PS My body felt so much better after I went off the sweets. My current fave dessert is Neuro-Mag (magnesium powder) mixed with Juice Plus powders, probiotic powder, multivitamin powder and vitamin C powder. I feel like a Mad Scientist mixing all of these powders every day. At least I enjoy the taste and do feel better now than before I started.

    Thinking of you and hoping you get some relief from the pain.

  • cowgirl13
    cowgirl13 Member Posts: 777
    edited August 2021
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    pipers, I'm always glad to 'see' you when you post. I'm so sorry to hear about your pain. You are in my prayers. I love your honesty.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited August 2021
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    Aww cowgirl, thanks for your thoughts. Honestly the pain is not nearly as bad as worrying that the meds are making it worse and the fact that I’ve been spending so much time on the phone with insurance companies and the financial dept at the medical group I’m working with. Yesterday I was trying to get into my new Blue Cross acct online and it would not take my password even though I knew it was correct so I called and he told me to make a new user name/pw so I did and that didn’t work either. I blew up and tore thru the house cussing like a sailor because the stress of this is going to kill me before the cancer does. The good news is that I now have a usable Obamacare plan that covers my new doc and the university group that goes with him. The last plan was so bare bones that I couldn’t even find an MO and the closest emergency hospital I could be covered at is 1.5 hours away in another state! The problem is that you can’t figure out who’s covered in a plan until you’re actually signed up so I used a navigator but this one led me wrong the first time. I came so perilously close to missing the deadline for changing plans that I’m still losing sleep over that one.

    Another thing that has relieved my mind is that I posted my question about pain on a thread on this forum dedicated to Ibrance questions and was reassured that this does happen sometimes and women still had tumor regression so I’m going to relax about that until at least after my next pet scan which must wait until after 9/1 because of insurance issues.

    Some thoughts I’ve been having about the comparison between alternative and conventional care is that I have never been as stressed out as I have been dealing with the conventional medical practice and that goes for every part of it. The first time I walked into Siteman in StL eight years ago was extremely upsetting to me because everyone looked so sick.

    As you know I’ve been struggling with the financial end because I’m not old enough for Medicare and too wealthy for Medicaid. My folks left me a nice little bundle of money when they died but it wouldn’t go far if I had to pay for cancer out of pocket for any length of time. Also, with a pre-existing condition I can’t imagine that I’ll ever be able to get another job with benefits so this will have to last. I live simply but that’s not really enough and i find myself thinking it would be easier to die than worry about going homeless because what would be the point of getting healthy if I’m out of money with no means for getting more? I can’t imagine having enough energy to go work at an Amazon warehouse nomadland style.The sticker price for Ibrance is $13,700 and so far the nurses have put together enough coupons to get it for me for free but I have no idea how long that will last and that thought is stressful as well. A recent statistic...45,000 people a year in this country die due to not having enough money to pay for healthcare. Now that is just fucked up, pardon my sailor talk.

    Alternative care OTOH was so much less stressful in almost every way. Yes I had to pay out of pocket and some of that was pretty expensive, but never so expensive that I was left scratching my head and wondering how in the hell they came up with that charge. I saw some of the same people week after week when I was getting regular vitamin C infusions and people were getting healthier and more energetic over time. I particularly remember one man who looked so old and decrepit that he could barely hold a conversation and he improved so much that I realized with a shock that he was actually quite handsome and much younger than I first thought. Honestly the only reason I switched over to conventional is because I was in crisis mode and mainly that was due to my inattention to my holistic plan because I’d been doing so well for so long that I got complacent.

    My plan is to get back to managing my diet and supplements while taking letrozole and Ibrance and knocking back the tumors as much as possible before the coupons run out and then I won’t have the huge tumor load on my body and the alt can take over. I may live less long but I’m after quality of life here. Sorry so long but I’ve had a lot on my mind lately and you may as well see the ugly side as well as the good.

  • cowgirl13
    cowgirl13 Member Posts: 777
    edited August 2021
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    pipers, so good you can come here and unload. Getting out all that stuff that's backed up in your mind has to have health benefits. Totally related to the frustration re getting your Blue Cross online account set up. I have a difficult time with these issues also. I go nuts. One thing I do is to not attempt any of the online hassel during the regular day. I need to do it in the morning, right after my coffee. Wishing you peace and serenity today.

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    pipers, if bone pain continues to be an issue, are you open to trying radiation? Rads can really reduce bone met pain (& sometimes the rads can actually kill the tumor in the bone, thus reducing your tumor burden helping the meds like Ibrance just keep the rest of the cirulating cells in control). So just throwing that out there as another option because when it works, a few rads can change things very quickly.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited August 2021
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    hi piper,

    This may not be much of a comfort, but it is our whole crazy patchwork system of various plans and insurance coverage that can make accessing conventional care so frustrating. I have it somewhat easier in that I belong to an all inclusive HMO. All facilities from hospitals to pharmacies are part of the HMO. All employees from surgeons to custodians are employees of the HMO. All records are digital and available to all practitioners so no delays in sharing records, imaging, test results etc. No approvals needed for scans or anything your doctor deems medically necessary. The have an excellent Medicare package and I will go on Medicare on 9/1, which essentially means there is no change for me as I transition to Medicare. Yet even with all that, I was almost tearing my hair out over all the paperwork! Wishing you the best and an extra helping of fortitude.

  • new2bc
    new2bc Member Posts: 252
    edited August 2021
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    Hi Piper,

    I logged on today after being away for a few years taking care of my mom who had Alzheimer's. I read most of your comments a few years ago when I had time before taking the task of taking care of my mom and admired your courage and passion for life you desire to live. My mom passed away 6 months ago, and today for some reason, someone in my head told me to log in and search for you. I am sorry you are going through hard times. One of the hardest things about being sick is dealing with insurance companies. When you call, they give different answers. The doctors also judge you and have their different opinions. I recently had to accompany my son to several doctors after the pandemic and went through the difficulties getting the appointment and the process you have to go to get decent help. All appointments were a few months away and you are in the mercy of someone cancelling an appointment to see the doctor. I hope you are on the right path as far as doctors and appointments. The medication decision is very hard too because sometimes the side effects are worse than the benefits. May be radiation is not that bad. I went though it and it was doable. Have you talked to your doctor about it?

  • pipers_dream
    pipers_dream Member Posts: 187
    edited August 2021
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    Cowgirl, I have to do it in the morning too since that’s my most clearheaded point.

    Moth and new2bc, the doctor hasn’t mentioned rads and I have “too many tumors to count” on my spine. I’m actually really surprised there isn’t more pain. Maybe you mean just the biggest? Gotta tell you all, I’m a pretty big coward about the idea. (And people call me brave...haha!) it’s good to know this info though.

    Exbrnxgirl, I think the crazy patchwork thing is what makes it so expensive too. I heard Canada caps admin costs at 1% and the US at 20%. Smh

    New2bc, I’m sorry to hear about your mom and that had to be really hard to lose her a little bit at a time. I was going to care for my mother with dementia but she passed away before i moved there. Anyway, I hope you had some help.

    To all, I’m feeling much more optimistic now as I got that out of my system lol and three new friends came over today and I feel so happy that I moved over here to southern Illinois because I was not fitting in in Missouri anymore. Things are looking up and you ladies make me feel supported. And no matter what happens it will all come out right in the end for all of us.

  • new2bc
    new2bc Member Posts: 252
    edited August 2021
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    Hi Piper,

    I am glad that you are moving on in the right path and are more optimistic about everything. I had a negative experience 2 days ago when I accompanied my 25 year old son to acupuncture. He left his previous job mid year and joined another bigger company in the technology field. After few months there, he started feeling anxious and depressed and questioning himself if he did the right thing leaving his previous job. Even though he was doing great in the new company and passing all the requirements and doing wonderful as far as duties. But it requires more learning which gets changed rapidly because of technology. I kept on reassuring him and supporting him and wondered if his thyroid may be the culprit. Getting an appointment right away with any doctor is very hard. Finally I was able to find appointments with internist, and endocrinologist. Both of them suggest for him to see a psychiatrist without waiting for the test results to come back. The internist was reluctant to test his Vitamin D because it he said it costs $200. I told him we have insurance and pushed to test it. Since my son is already anxious especially with the doctor and can not be aggressive to ask for tests, I had to step in and request for some tests. The doctor is reluctant to test for vitamin D, glucose because he thinks his symptoms have nothing to do with being anxious and depressed. He was offering medicine such as Prozac. He even said "Do not come and see me again if you don't start on Prozac". His blood work came back and he was low on Vitamin D. I also saw a benefit if he goes to acupuncture. After the 3rd visit there, the doctor says " I am the reason my son feels anxious and he wants me to also take acupuncture because he feels I am anxious too". All I am trying to say is that these doctors make up their mind about you in 5 min and put a label on you. After that doctor visit, I was thinking these doctor visits and insurance problems make you more anxious than before., and you are trying to stop anxiety by seeing them. My son came home angrier than before after the visit because of the doctor's behavior. I have to accompany my son to the doctor because he is anxious and I do not want him to drive there by himself and be intimidated by the doctors and not know the right questions to ask. Anyway, we were both in a better place mentally and physically before going to the acupuncture and this defeats the purpose of trying to relax and beat anxiety. My son also saw a psychiatrist and wanted to put him on 3 different medicines and never even asked him if he had tested for his thyroid, glucose or any blood work before. He does not want to take any antidepressant that would require him to be on it for a long time. I have increased his dosage on vitamin D and giving some B vitamins, b12, folate, b6, magnesium and has started on 5HTP, probiotic, lavender essential oil. Anyone here has any experience with anxiety and what they take that has worked for them?

  • tb90
    tb90 Member Posts: 281
    edited August 2021
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    Piper, I am so glad I just stumbled here. We were dx’d at the same time and I loved following your alternative treatments. You are always so encouraging to others and avoid defensiveness against much opposition at times. When you were travelling and thought you might come into Canada I thought how lovely it would have been to meet you. Like exbrnxgrl, I have never said that before! You clearly have had a very positive and impactful impression on others. Allow us to be there for you now. And I am so glad to hear that you are feeling better. Just wish I could contribute more than words. I often thought about you. Thanks for coming back here.

  • trishyla
    trishyla Member Posts: 698
    edited August 2021
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    I echo what TB90 and exbrnxgirl posted. I have followed your journey for quite some time and have always admired your honesty and your willingness to own your decisions, good or bad. Thank you for coming back to update us on how you're doing.

    Trish

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2021
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    new2bc, your experience with your son and his doctor sounds really stressful and infuriating. Some can be such horrible listeners and you’d think they’d listen to what the parents have to say but they so often don’t. I hope things are improving.

    TB90, what a sweet thing to say...I would’ve arranged to meet you if I went up that way but I never did. I thought about going up there because Winnipeg looks so beautiful from the pix I’ve seen but then it got cold and i headed south instead lol

    Trishyla, I’m glad that this has had an effect. I wanted to put this out there because so few people make this choice and you all should know what it’s really like

    Warning, what is to follow is pretty dang depressing.

    I came to a realization today. I really cannot handle conventional medical care and our healthcare system. Every part of it makes my spirit rebel and my blood boil. Whether I’m dealing with the insurance company or my new doctor it just feels awful. I had a doc appt today and was really struggling with whether I want to continue with Ibrance and he happened to mention that he wanted to test for hep C and he just did that last month so I asked why again and he said because I tested positive for antibodies and it could flare up into a full blown case of hepC due to Ibrance and then I’d have to take THAT drug too so I left very upset. I have no idea where and when I got exposed to it but I’m thinking from a pedi I got in Ecuador and then I got sick a few days later. But I’m thinking what is the point then? Gain a toehold on cancer then end up with hep C. I’m not giving up but I think I’m giving up on conventional care, mostly. I went back on the keto diet again and already feel better. I also renewed some supplements that I’d stopped taking.

    But all this brought me to the realization that I actually am just ready to go. I don’t mean that I want to die, but it feels inevitable at this point. It’s not depressing to think about dying, it’s depressing to think about conventional care and in the US particularly. I really think this is just my personal journey and the reason my soul is sickened by it is because it’s not right for me. I’m single and lonely and completely isolated and spending way too much time in bed these days. I love my house and have many projects that I could be working on and I love to garden but have absolutely no energy. And don’t even get me started on covid because I see no end in sight, not in this part of the country anyway. It’s not all bad...I used to fantasize about having all the time in the world to read. Well here I am. Lol. And I love sitting out on my front porch completely surrounded by nature. I’m grateful for my life and the people in it but I’m just done. But I will slow it down to the best of my ability with alternative

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,869
    edited September 2021
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    hello piper,

    You are an extremely self aware person and I imagine that you've put a great deal of thought into what you want to do going forward.

    It is very frustrating, actually maddening, to hear about the wide variety of experiences that those of us in the US have with our crazy patchwork “system" of medical care. Without a doubt, what we experience personally has an enormous effect on our mental as well as physical health. I count myself fortunate to have avoided much of the hassle of the US patchwork system by being part of an all inclusive HMO ( including a big emphasis on wellness) but that's not an option for everyone .

    Take good care my friend.

  • cowgirl13
    cowgirl13 Member Posts: 777
    edited September 2021
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    piper, love the thought of you 'sitting on your porch surrounded by nature'. We are all with you.