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Thread: Cancer--Would anyone like some cheese with this whine?

  1. #21
    Clearly I have many edits to my posts. My apologies. You've all been very helpful, easy to understand and compassionate. I put away the wine now, it's gelato time for me. I have to get my calcium any way I can ;-p
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  3. #22
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    Quote Originally Posted by Romanov View Post
    Yes @Gullible that is correct about the new treatment. There is a huge push in the U.K. right now for people with chronic illnesses to be allowed to try exeperimental drugs and treatments if they consent to it in full awareness of side effects. Right now it’s at the Home Secretary’s discretion, to his credit in two recent cases he allowed a Scottish Nurse to be given the experimental ZMAPP serum to cure her from the Ebola virus. Also a young boy in England who was severely epileptic was allowed to import THC oil which cured his fits. Hopefully there will be legislation for this soon. I’ve long believed, even as a doctor, that the individual should have autonomy to put whatever they want into their bodies, as long as there is a full awareness of the consequences and side effects. Is there a similar push for this type of thing in the US?

    Dobre
    Rom
    Yes here they have what I believe is called the right to try act. It gives those with serious conditions the right to try new and experimental treatments. That is all I know about it but I'm sure a search on duckduckgo will find more. Don't use google they are evil

    Here is the link to that paper on the ground breaking new treatment for cancer and possibly other diseases https://www.jpost.com/HEALTH-SCIENCE...und-one-578939

  4. #23
    @Romanov - I like you a lot. I dearly wish more physicians would approach patients as partners who can and should take an active role in decisionmaking and care and not children to be told what to do. I think most of us understand that Dr. Google is not an actual physician and, while Dr. Google offers lots of raw information, cannot bring to the table the clinical judgment that comes with years of training and practice. Still, there is SO much new information out there - I read somewhere (and should Google to confirm) that by the year 2021 broad medical knowledge will double about every 73 days. I don't know if that's true but I do know that medical (and other) knowledge is increasing at an astonishing pace and no physician, no matter how highly trained and up-to-date, can possibly keep up with EVERYTHING that is new in medicine generally and probably cannot even keep up with EVERYTHING that's new in his or her specialty. No one is a human computer! I learned how to do medical research when a close family member was diagnosed with an incredibly rare disease (fewer than 10 in a million, and that is not an exaggeration), and the truly outstanding doctor who provided her specialty care simply didn't know that much about this particular disease. And at the time I did not know what to ask. Eventually I learned to do my own research because I had to. And I learned to ask A LOT of questions, and insist on either answers or a willingness to look at research I turned up. I think that nowadays patients really do need to become quasi-experts in their own diseases - for sure they are experts in their own bodies. They have to be, if they're to be true partners in their own care, and they'd better be partners in their own care, because they're going to be the ones living with the outcomes.

    - - - Updated - - -
    @karuna - I would ask your care coordinator, if you have one, or else your hospital's social worker, if Medicare covers palliative care in your case. You may need to push for the information, but I do know that in many cases Medicare does indeed cover palliative care if it's considered medically necessary. With cancer care I suspect it's medically necessary. If your oncologist disagrees then see if your primary care will say that it's medically necessary (or get a different oncologist. Yours does not seem like the best of listeners).
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  5. @karuna, i'm sorry for your diagnosis. you are no doubt in shock. please consider, though, getting a second opinion and an oncologist with some better interpersonal skills. you need to see all of your treatment options so you can plan before making your decisions. a doctor needs to be supportive and on your side.

    while dr. google might not be ideal for a diagnosis, it is invaluable for you to become informed on your illness. the internet can provide you with a full understanding of what's happening with your tumor. in addition, there are cancer forums where you can read and interact with fellow sufferers. so much good info! case in point: i had a dexa scan yesterday and one of the questions on intake was how many fragility fractures i had. i had never heard of the term, so googled it when i got home and realized i had two. more importantly, no doctor had even mentioned that to me and i had to ask the pcp shouldn't i have a scan since my broken foot took 10 months to heal. imagine that. i was seeing an ortho, a spine doc, and a pcp and not a single one thought to suggest testing my bone mass.

    i am getting older too and have been diagnosed with things i'd never heard of before. when i was in grad school, that would have meant hours in libraries. now it takes a minute to find reliable sources. i really encourage you to educate yourself on your condition and options. then you can make informed decisions. right now you are grieving, but understanding the disease is very empowering and will give you some control.

    you are getting into a fight here and you need your weapons ready.
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  6. Hi @Ellyn thank u for your kind words. U r 100% right, medical knowledge and innovation is expanding exponentially by the day!! And that’s great, more cures, more treatments, more preventions. This does mean the the first point of call you GP (me back in the day) can be unaware of new data, or more perniciously blindsided by big pharma pushing their latest money maker! (I had a rule as far as drugs went, if I wouldn’t prescribe it to my family, then I wouldn’t prescribe it to anyone else, that really focuses the mind in the face of pressure from above). A lot of patients r unnerved when they hear physicians say bluntly “they dont know what’s wrong”. Understanding this is key, u must be honest, and say “listen, I’ve done everything in my sphere of knowledge and experience, and we haven’t worked it out yet, but we will” and then u pass that case up the chain of specialist, but u must chase it down ferociously, someone will know the answer in a modern robust healthcare system. And when the answer comes back, then hey!! Great we know wot to do, and I’ve learned too. A good GP should be honest if he is stumped, and stay on the journey of discovery with his patient. The patients fears should always outweigh the ego of the doctor!

    Dobre
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  7. #26
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    @karuna, I am so sorry this is happening to you. But I thank you for starting a truly wonderful & informative thread!

    @Romanov, I really appreciate your posts.

    And @Ellyn, your information about palliative care is invaluable. In recent months, I've been unpleasantly surprised to discover that many in the medical field apparently do not understand the difference between palliative care and hospice; at least, many medicos who are working with me don't! Maybe I'm just lucky?! A social worker actually scolded me when I said I was looking into it, telling me I was "not the kind of person to just give up!"

    First off, how the hell would she even know I'm not, lol? We've had a few phone conversations but have never met in person. Anyway, she obviously thought I was talking about hospice and, frankly, didn't seem wildly interested in learning there was a difference. My primary care doc is better educated but has cautioned me against pursuing palliative care while I'm still trying to get on the transplant list because some of TPTB who make recommendations to UNOS may not quite understand the distinction either.
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    Like a Bolt from the Blue!

  8. #27
    @Ellyn @H20shed65 @snowy @Romanov @Gullible @notcharlotte @blueroan17 @Bauston @Danie

    Thank you for sharing your knowledge about Palliative care vs Hospice care and I also feel the information in the thread to be wonderful and informative @blueroan17. I also appreciate your suggestions and support. It has been very helpful. Last week I was admitted to the hospital for an ongoing problem where my sodium level drops (hyponatremia) and I usually, without warning, lose consciousnesses. After I was treated, I spoke with the NP and she put in a request for a social worker to contact me. The general consensus is I should be able to have some level of Palliative care, how much is still unknown and how it will be paid for, but there is forward movement with that. I feel hopeful. I was written a script for a wheelchair and it was strongly suggested I stay in it until after the surgery for the pituitary tumor so I don't fall over like a goat on YouTube---plop-- and suffer a broken bone or head injury. Gads--I am not sure about that and I am not certain I will have the other tumor removed.

    Oh :=) my PC physician retired, but his MA is still working at the same clinic and I was able to contact her. She had some PC physicians she recommended and she will try to contact the PC I had for 25 years. He will have some compassionate and informative advise.

    I would not have thought about Palliative care without @Ellyn suggesting it. Thank you. @snowy I hope your daughter and you are okay. @blueroan17 I understand and I am so very sorry you need a transplant. So sad. @notcharlotte yes I do suppose I'm in shock and not thinking as clearly as I would like and it does feel like being in a battle with what the physicians can do and what my bbody is doing. @H20shed65, you share your wealth of information which is so generous. @Romanov you offer kind and compassionate suggestions. @Danie, thanks for being a friend in need. @Bawston thanks you and my best to you. I have family members that struggle with this. Maybe some people should be "grandfathered"? It's so complicated.

    I also want to say I do Google, but not for a self-diagnosis. I worked for the NIH in Public Health Emergency Preparedness and Disaster Response and had access to current information, research and trials, and it was working for the government (left after two years--phew) where I learned not to search for answers before a diagnosis. I took your suggestions to do so now that I have one, and I have learned more than I did regarding care and the physical and emotional process I'm experiencing.

    My husband broke down and sobbed worried this time I may die which led to having an open and meaningful discussion about how we feel. We've had these before, but now...he is scarred and thinking about the challenges I face and I think about those he faces. It's an odd strange place to be in.

    Thank you again. I'm grateful, hesitant, learning. I'm also amazed at the kind, caring people you meet if you open up. Yes, the members of the people on PR are amazing.
    Last edited by karuna; 2 Weeks Ago at 07:20 PM.

  9. #28
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    Hi @karuna

    In my absence I fear I did not have an opportunity to read any posts where you may have discussed your particular diagnosis. I’ll spend some time over the next few days reading in the hope I can get up to speed. Hyponatremia can be very serious, but is normally rather easily corrected by diet unless there exists an underlying pathology which prevents you from replacing sodium faster than you’re apparently losing it.

    I do not know what type of insurance, if any, you currently have. However, most often visits to a Palliative care specialist are covered by most Commercial Insurances as well as Medicare and Medicaid. Most people don’t realize that one can be 30 years old with a Chronic Disease like Staged Kidney Failure and qualify for Palliative services. The clinician may need to bill your Insurer in a special way to get services covered, but at the core Palliative medicine is simply the practice of easing and treating symptoms arising from any chronic, incurable disease process. People in Palliative care can live for many, many years.

    Hospice differs in that the patient MUST have a diagnosis from a clinician of having 6 months or less to live. Obviously, no clinician can predict anyone’s death with certainty, but people enter Hospice ( now, more than in the past ) earlier than they once did. If 6 months rolls around and my patient is busy visiting DisneyWorld with family, we normally need only contact Medicare ( the vast majority of our patients use Medicare ) and have their physician RE Certify them as eligible for services, and it all starts over without interruption.

    Be Well~
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  10. #29
    @H20shed65

    I have an autoimmune disease -Mixed Connective Tissue disease. Migraines, Lupus, RA, Sjogren's, respiratory complications, photo-sensitivity, fibromyalgia, newly diagnosed renal failure, I've had other health issues prior to that diagnosis. I have a benign tumor on my Pituitary and a Astrocytoma tumor which is malignant. I have had Von Willibrands, well forever which makes surgery a bit more complicated. I had many laparoscopies for endometriosis and it wasn't until I had a hysterectomy that I had my first experience with hyponatremia--wrote that off to the water overload. The endo was very advanced and was done with excision and laser. I had always had an infusion of DDAVP prior to a surgery and was ill after but never made the connection, but after the hysterectomy I was in a coma for 3 days and pretty out of it afterward. I had excellent surgeons, but no one knew DDAVP was what me sick after the laparoscopies for the endo. I lost one ureter from the disease. Everything was fine and I wished I had done it sooner, once I felt better.

    About one year ago I began my adventure with an endocrinologist. Prior to that I had been diagnosed with Systemic Lupus and it's affecting-destroying my kidney--renal disease. My serum sodium is about 125 and the lowest is 121/122= Hyponatremia. I get fatigued, have a headache, sometimes confused and then often without warning slowly deflate and end up on the floor. I need infusions because the serum sodium is low and I need an infusion which requires a hospital stay because I am very weak. I do not have excess water intake nor are any medications causing it. Just the interesting autoimmune system. My body also does not hold potassium or calcium which is another layer of this complex body of mine. I am seeing a nephrologist and my heart is closely watched.

    I am newly diagnosed with the brain tumors and the hyponatremia out of the blue from kidney issues is also recent. So, that's why I feel my body is being destroyed by itself.

    I am new to Medicare and also have supplemental insurance. I believe being covered for Palliative care will take some prior authorization and I'm not certain about how they respond to refusing surgery. It's by body, so I hope I have control. Stage 3 probably qualifies me for something? Gelato?

    Easy peasy... LOL. It's just frustrating.

  11. #30
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    Hi @karuna

    Wow, quite the plate full! I’d guess any diuretics you’re on for the Kidney disease are likely causing the hyponatremia. That should be easy to correct with medication changes. If you’re on Medicare, you should have little trouble getting coverage for Palliative care. I’d contact a Hospice and Palliative care practice ( they often practice together ), explain your situation and, assuming you do not have a Medicare Advantage program, I’d bet my last dollar the practice will find a way to cover you and bring you on service. Trust me, they EXCEL at that!

    At Minimum, be certain you are utilizing a Hospice/ Palliative Care Practice! Otherwise, physicians not in this field tend to view Hospice/ Palliative Care as “giving up” , or admitting failure. Something they’re not trained to deal with Post Graduation. Whereas physicians practicing in these fields understand not only how to treat this diagnosis, they excel at getting insurers to cover the costs as well.

    I cannot speculate on any surgeries simply because every practice is different. Some refuse any treatment they may view as curative ( don’t be fooled, they just do not want to pay ) where others view some procedures or surgeries as treating symptoms to improve quality of life. They understand it’s not curative, but Palliative. Not to gross you out, but I’ve treated patients on Hospice who wanted Tumor Reduction Surgery. They understood it was not curative, but if the surgery allowed them another 3 months of less pain, eating and living a more normal life, then they felt it was a risk worth taking. They’re usually right!

    Be Well and when possible, please keep us updated.

    ~ H20
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  12. #31
    @H20shed65

    Thank you for your insight and suggestions. I am grateful for them. I needed the hospital stay because the sodium level was very low and a slow infusion was needed and then another CT scan, and was on watch for cognitive symptoms to improve and they wanted me to walk. Adjusting (lowering) my water intake made no difference and yes, there has been a change in the diuretics and I will remain positive. I was admitted in the corpse pose and left able to walk and do the tree pose (yoga poses) ;-p

    And for all the suggestions and links to articles--@Gullible and @Ellyn. I enjoy reading and always learn something fascinating and helpful, and sometimes hope, if not for myself, for others.

    I have been doing a lot of sharing which may seem like I'm complaining. I never intended it to be so. I'm frustrated because I have little control. However, I am not bitter nor do I feel self-pity--okay a wee bit on days that are overwhelming ;p I hope you don't feel I am seeking sympathy. I truly am not. For as complex as my health is, I'm very aware many others have more difficult and challenging health issues.

    If anyone has anything to share, please do I will be open and thankful for you assistance, and I will share only information that others might find useful.

    My thanks and best to everyone. Namaste.
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  13. #32
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    I along with I'm sure everyone else am pleased to hear there was some improvement, you were carried in and later could do a yoga pose. Keep up the positive attitude and always look into alternative treatments for your symptoms. I don't mean give up the doctor but there are things for pain, bloating, constipation etc that have fewer side effects.

    I was able to get a ms patient to try several things and she overcame itching that was driving her mad, was able to get sleep and some relief from pain from a non addictive herb, also some help for mood and overall welbeing just from trying herbs and things. Most people won't try anything even if it helps many others but she was open to trying things, they were just stuff I've already discussed on the forum. It made me feel good to hear how much better she was feeling.
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  14. #33
    Thank you @Gullible for your kind words of encouragement and suggestion to try alternative options to relieve some symptoms. I 've personally experienced a major benefit from alternative treatments. I'm currently trying to write out my goals and expectations and what I need to do. It's daunting being my own advocate. I was a wonderful manager and love/care-giver for in-laws and parents, but this is more challenging, for now. @Ellyn @H20shed65 I appreciate your suggestions about Palliative care. That has not been a easy as I would like because I don't have my mind up on exactly the path I'm going to meander down. I was asked by my oncologists PA if I wanted to take every action to extend my life or do I want to be kept comfortable? I was also asked about my expectations for pain control and if I was seeking pain relief now. I told him I didn't have pain I couldn't cope with now and I have no idea what the future holds, but I want to keep options available and that's where I see Palliative care being helpful, among other needs I have now or may have going forward, separate from whatever form of treatment or none, I decide is best for me. I called the hospital social worker and it was suggested I hire a home health care agency. I'll call a couple for a meeting.

    I feel I'm standing still, yet I feel that's what I need to do...still my mind. I have to add, I really don't know and that is an uneasy place to be standing and I don't like it and don't know how to chance it.
    @Gullible I didn't need to do the yoga pose, I was being "tested" for balance and I knew it is great, so I showed off, I guess. I was also tested for cognition and although I refused to name the president ... I did explain it was too anxiety provoking for me ;p

    I will keep on truckin' hoping what that my head and heart can both feel good.
    Last edited by karuna; 1 Week Ago at 08:02 PM.

  15. #34
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    Quote Originally Posted by karuna View Post
    Thank you @Gullible for your kind words of encouragement and suggestion to try alternative options to relieve some symptoms. I 've personally experienced a major benefit from alternative treatments. I'm currently trying to write out my goals and expectations and what I need to do. It's daunting being my own advocate. I was a wonderful manager and love/care-giver for in-laws and parents, but this is more challenging, for now. @Ellyn @H20shed65 I appreciate your suggestions about Palliative care. That has not been a easy as I would like because I don't have my mind up on exactly the path I'm going to meander down. I was asked by my oncologists PA if I wanted to take every action to extend my life or do I want to be kept comfortable? I was also asked about my expectations for pain control and if I was seeking pain relief now. I told him I didn't have pain I couldn't cope with now and I have no idea what the future holds, but I want to keep options available and that's where I see Palliative care being helpful, among other needs I have now or may have going forward, separate from whatever form of treatment or none, I decide is best for me. I called the hospital social worker and it was suggested I hire a home health care agency. I'll call a couple for a meeting.

    I feel I'm standing still, yet I feel that's what I need to do...still my mind. I have to add, I really don't know and that is an uneasy place to be standing and I don't like it and don't know how to chance it.
    @Gullible I didn't need to do the yoga pose, I was being "tested" for balance and I knew it is great, so I showed off, I guess. I was also tested for cognition and although I refused to name the president ... I did explain it was too anxiety provoking for me ;p

    I will keep on truckin' hoping what that my head and heart can both feel good.
    @karuna, you are amazing! You are absolutely NOT "whining", not even a little bit, in any of your posts here, and you have nothing to apologize for! I admire your resilience in the face of what you are dealing with, you clearly are a strong, positive person who has been given a plate full of crap, yet you seem (to me, anyway) to be handling this all with both a great sense of humor and a realistic sense of your life. I, personally, am in admiration of you, based on your posts on this thread. I wish that I could send actual healing vibes to you through the internet, but since that's not really possible, just know that I am sending those thoughts into the ether on your behalf! You are awesome!!!
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  16. #35
    @karuna - while you consider the direction you will choose for treating/managing this challenging medical issue, remember that extending life and maintaining quality of life, including remaining as comfortable as possible, need not be mutually exclusive. If you opt for life-extending treatments that doesn't mean that you shouldn't also seek (and receive) the best management of symptoms and side effects that the medical team can offer.
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  17. #36
    Quote Originally Posted by calgal99 View Post
    @karuna, you are amazing! You are absolutely NOT "whining", not even a little bit, in any of your posts here, and you have nothing to apologize for! I admire your resilience in the face of what you are dealing with, you clearly are a strong, positive person who has been given a plate full of crap, yet you seem (to me, anyway) to be handling this all with both a great sense of humor and a realistic sense of your life. I, personally, am in admiration of you, based on your posts on this thread. I wish that I could send actual healing vibes to you through the internet, but since that's not really possible, just know that I am sending those thoughts into the ether on your behalf! You are awesome!!!
    @calgal99 (((Thank you))) I don't feel worthy of your kindness. You are a dear, understanding person and will accept your healing thoughts, anytime.

    Can I just say something you will probably understand. When I'm sitting in the hospital Oncology waiting area, I look around and see so many in clear pain, weakness and feeling ill I know my health issues are many, but when I look around...I feel out of place because I'm still able in many ways, even though I'm unable in so many more. Maybe it's the guilt and confusion that people with invisible illnesses have? Maybe I'm in some denial as well. One look in the mirror usually clears that right up :-/

    I also think of the many members here who suffer invisible pain. Sad. But a great thing to have each other.
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  18. #37
    Quote Originally Posted by Ellyn View Post
    @karuna - while you consider the direction you will choose for treating/managing this challenging medical issue, remember that extending life and maintaining quality of life, including remaining as comfortable as possible, need not be mutually exclusive. If you opt for life-extending treatments that doesn't mean that you shouldn't also seek (and receive) the best management of symptoms and side effects that the medical team can offer.
    @Ellyn Thank you for that is exactly what I want and need. I actually needed that reminder today because I'm feeling confused and conflicted as to when and from whom I will receive the assistance I'm asking for. I feel I'm either missing something in the questions I'm asking or in what I'm asking for. Success next week---the goal. And changing Oncologists is also a challenge. They are busy.

  19. #38
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    H20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond reputeH20shed65 has a reputation beyond repute
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    @karuna
    Your physician should be asking you what are your goals? Too few physicians bother to inquire about this seemingly fundamental question. Everyone has different goals, and if you can explain to your physician what yours are, especially one who specializes in palliative care, you’re likely to achieve the best outcome. While I agree in theory with @Ellyn that curative and palliative goals need not be mutually exclusive, please be mindful that there are tradeoffs to be made. Like life, there are no guarantees, but I am always surprised at some of the goals “I” think a patient may wish, only to discover when I enquire just how wrong I was.

    I have a patient on census now with a panoply of conditions, primarily COPD with congestive heart failure on oxygen who told me the only thing that mattered to her was to be at her granddaughters wedding in May. I spoke with her and our Medical Director and we decided on a combination of Steroids, Potent Diuretics, several COPD Nebulized medications and mixed salts of amphetamine as needed to combat fatigue.

    She’s feeling great and understands this is only a bandaid to keep her rolling along with an extra step in her walk until she can watch her granddaughter walk down the aisle and say I do. God willing, we’ll get her there.
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  20. @karuna, quality of life is vital. remember that a brain tumor can lead to behavioral changes that some surgery might prevent. a really good guy i knew with a brain tumor turned into an angry monster, frightening his wife and young kids. he was a totally different person and it was quite shocking and scared his kids.

    yes, oncologists are busy but they're busy for a reason: you. this is not a time to put up with below-par care. you need the best, and you need someone to lay out all the scenarios for you. your husband would prefer you to be around longer, hair or no hair.

    you have a lot of empathy for those around you. this fight is about you, however. you deserve the best. just don't give up and fight for your goals.

  21. Cancer--Would anyone like some cheese with this whine?
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