Collateral Damage


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Dr. Susan Love published an interview on Medscape last week on the “collateral damage” of breast cancer treatments as reported by 3200 actual patients and not their doctors. She noted that doctors and patients often view things differently. For doctors, a living patient is the major sign of successful treatment. They don’t want to hear about treatment side effects that they can’t treat and cure, she says.

The patients and survivors are also happy to be alive but their quality of life may be severely impaired by chemo brain, depression, anxiety, fatigue, neuropathy, and hot flashes. She calls this collateral damage rather than side effects as often these symptoms are permanent, not temporary. She doesn’t mention breasts disfigured through lumpectomy and radiation, having no. breasts at all through mastectomy, or having a bad or failed reconstruction job. Presumably, these are just the regular damage to be anticipated from breast cancer treatment.

She reports that many survivors either weren’t told about these long term collateral damage effects or they were told at a time when they were so overwhelmed with other cancer information, that they were not able to absorb the message. Or if they did absorb the message, they were more concerned about staying alive than really thinking through how this collateral damage would impact their post-treatment lives.

The passages of her interview that really disturbed me the most were that chemo brain and neuropathy were forever. They don’t get better. You just get used to them and find your new normal. In other words, you stay numb and dumb forever. She could have added depression, anxiety, PTSD, and impaired body image to this list as they are often long lasting, sometimes forever.

I admit to being one of those who were told the “side effects” of chemotherapy (at least the second time around) and it was a blur of nightmare words and images ending with the ultimate side effect of death. Everything else was forgotten the moment it left the oncologist’s mouth. Thank God I took notes.

But nothing in my notes said that chemo brain and neuropathy were forever. Or that I would eventually wind up with PTSD and free falling panic attacks. Chemo brain was supposed to end with chemo. Neuropathy was supposed to eventually go away.

And no one told me just how bad a reconstruction job could be. So bad, that even oncologists and their nurses urged me to find a new plastic surgeon and get it fixed. I eventually did but after about 7 years, the implant inside the flap became encapsulated with scar tissue and is now a hard ball that juts off to the left of my body. My newest plastic surgeon is afraid to operate again for fear the whole reconstruction will collapse. So I walk around with a badly reconstructed left side and a right side that should have had the permanent implant put in it 3 years ago, dragging my feet about signing up for more surgery that will result in 2 mismatched breasts or even worse, 2 matching deformed breasts.

I had a male colleague at work whose wife had breast cancer shortly after I had my reconstruction revised. I even referred them to the plastic surgeon who performed the same back flap surgery with silicone implant that I had. I remember sitting in his office 2 years
after her surgery and listening to him complain how he could no longer make love to his wife as the surgery had left her “a hideous grotesque monster”. He was generally a very kind man and I think for a moment he forgot that I too had the same surgery. My smile froze on my face and I quietly left the room, stung to the core. It quickly put me in my place that no matter how much better the fake breast looked than before the revision, in some men’s eyes,
I would always look like a hideous grotesque monster. Yes, body image issues are forever after breast cancer.

I should note that he left his wife shortly after this conversation and is now remarried to a normal 2 breasted woman. From the Facebook groups I belong to, it seems many marriages end after a breast cancer diagnosis. So do many friendships. More collateral damage to add to the list?

I had dealt with chemo brain before way back in 1994 when it was a slang term that patients used but wasn’t really acknowledged by doctors as a true medical condition. I had short term memory loss and word problems way back then but I seemed to be back to normal 18 months post-chemo.

Ten years later, I woke up one morning with 2 fingers in my left hand permanently numb although I didn’t know it was permanent at the time. The neurologist couldn’t find anything with his shock tests so I was sent for a brain MRI.

All hell broke loose then when it showed that my brain seemed shrunken (now a recognized piece of collateral damage from chemotherapy) and was covered in white spots consistent with multiple sclerosis but in the wrong parts of the brain. I still spent 3 years at the ms clinic waiting for more symptoms or for my MRI to change. Finally, I was told it wasn’t ms and then spent the next 2 years seeing every medical expert in town for a cause for my numb fingers and unusual brain MRIs.

Someone suggested it could be a late arising radiation symptom. No one ever suggested it was from chemotherapy. I still don’t have a definitive answer but I truly believe the numbness and the weird brain MRIs are collateral damage from my first 2 cancer treatments, involving both radiation and chemotherapy. Given that the condition has remained permanent for the last 10 years, I suspect my neuropathy is forever. And no, I’ve never gotten used to it or found my “new normal” in dealing with it. It makes me angry and frustrated that these symptoms showed up years after active cancer treatment. What other long-term “gifts” does cancer have in store for me down the road?

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I had chemotherapy again in 2011. Suddenly chemo brain was a real condition that oncologists talked about seriously. I don’t recall being told that it could be a permanent condition. For me, the chemo brain has in fact improved significantly but it still rears its ugly head in times of stress or fatigue (and sometimes for no discernable reason at all). It seems to have stabalized about a year ago and I always assumed it would keep getting better as time went by.

But now reading that chemo brain can be forever, I am left wondering if this is as good as it gets. Will I always be plagued with a brain and tongue that don’t connect or a brain that has much poorer short term
memory than it did before the second chemo? Some women have written in the comments to this blog that they suffer from radiation brain with the same symptoms as chemo brain. God help me if this is true, as I have been radiated twice along with my 2 bouts of chemotherapy. My brain must be the size of a peanut by now, covered with even more white spots and less grey matter.

It is clear that research money has to go into ways of dealing with the collateral damage breast cancer treatments leave behind as well as trying to prevent the damage from happening in the first place. We don’t need more awareness of breast cancer. Everyone is aware. We don’t need to use race money to fund more races. We need to find ways to help with these survivorship issues. And even more importantly, we need research money for a cure for metastic breast cancer, the only breast cancer that actually kills.

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Sharon Greene March 10, 2015

Posted from WordPress for Android

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80 thoughts on “Collateral Damage

  1. This is a really informational and interesting post and also getting a small glimpse of the outside in. Thank you for writing such an informational post.

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  2. Hi Sharon,
    I know this is far from any kind of understanding what you or others have or continue to go through but I have dealt with some health issues (heart disease and attacks) and have Always suffered with Depression. The reason for my reply is that I am a professional tattoo artist and in the past year I have started doing Realistic Nipple tattoos on Breast Cancer Survivors and and Always Amazed at the horrific stories these people have. It makes me feel bad for ever having felt sorry for myself and my issues. The Great thing about my work though is that Reaction I get to see when they look in the mirror after I finish. A lot of the tattoos I do are also Repairing Unsuccessful Tattoos done by Inexperienced people such as doctors assistants and cosmetic tattooers. I am in No Way saying that there are not some talented ones out there but they are Few and Far between. I also like the fact that many of these women refer to themselves as frankenstein or Alien-like before and after tell me how much Confidence and Self Image I have restored. It never gets old hearing you helped make someone feel even a little better! I also put 10% back in so basically every 11th Nipple Tattoo I do is Free to a woman in need without the means. Anyways if you would like to see my work you can do so at breastrenew.com Thank you and have a Great Day! 🙂
    Ron Antonick

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  3. This is very informative Sharon, and brought a lot of awareness to myself, which I am very thankful. Have heard the term “chemo brain”, but did not know what it was about.
    Sincerely hope that you will see improvements from the collateral damage inflicted on you from the treatments.
    Sincerely,
    ~Carl~

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  4. Wow Sharon!
    Collateral damage and scars seem to last forever and keep reminds us (and not always in a pleasant way), about our battles. I never imagine that the damage after chemotherapy was so bad.

    I’d like to add, some men are ass#$es!! I can’t compare to your pain in any way, but I know how much it hurts a comment like the one you co-worker made. From my own experience, it stays engraved in the mind and heart and it keeps releasing pain for a very long time… I’m so sorry some people can have those thoughts/feelings.

    (I’m so behind reading!! I hope you are well. Big hug!).

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    1. A big hug back to you too! Sometimes people don’t think before they speak or they forget who they are talking to and say something wildly inappropriate! This particular colleague was probably mortified after it dawned on him that I had the exact same surgery as his wife. I even referred them to my then plastic surgeon. An apology would have been nice.

      Liked by 1 person

  5. Sharon, I have a friend who is dealing with the after effects of surgery for acoustic neuroma, a growth that develops on the nerve connecting the inner ear and the brain. Your post reminded me of how she’s been feeling since the surgery: frustrated, sad, and afraid that she’ll never be herself again. I know you focus on breast cancer, but please know that your post inspired me to write a little note of encouragement to my friend as she tries to deal with her “new normal.”

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  6. Yes, the collateral damage is real and of course varies from person to person. And so often too many suffer in silence due to not wishing to appear ungrateful for being alive. I don’t think I’ve ever heard someone come out and say that chemo brain can be permanent as Dr. Love did. Do you have the link to her report? I’d like to read it. Terrific piece. Thank you.

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  7. Terrific, insightful post, Sharon. Doctors don’t always tell us about all the collateral damage. I suffer from chemobrain, PTSD, body image issues — and nobody mentioned these. Of course, perhaps no doctor thought I’d have these symptoms forever….

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    1. Dr.Love’s statement that chemobrain is forever really freaked me out. I suffer from the same symptoms you describe above. I’ve had body image issues since my first surgery 27 years ago and there is no indication these are going away soon. PTSD came later but also shows no sign of going away in the near future. I guess we just hang in there Beth and hope someday someone can undo the damage to our minds and bodies.

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  8. Sometimes I cannot believe my luck-I was warned of permanent issues with neuropathy–amazing considering I was treated in a rural, bass-ackwards area not exactly cutting edge or progressive in treatment. But I was totally unprepared for the mental and emotional and silly cultural fallout from cancer. Those issue continue to be collateral damage for me.
    Great post–thanks for writing it!

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    1. Yes, we sometimes miss some of the physical effects of treatment but the emotional and psychological effects are hard to avoid. These can become just as debilitating as physical symptoms. I feel forever damaged psychologically.

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  9. Sharon, thank you so much for this article and also for all the responses, knowing that the effects of treatment are so far reaching is something the medical staff don’t talk about.

    Please could I quote part of your second paragraph in my blog?

    Liked by 2 people

    1. Absolutely you can quote from my post! Sadly, the medical community seems out of touch with the problems we face after treatment is done. More money has to go towards survivorship issues post-treatment. Thanks for your comments!

      Liked by 2 people

  10. Sharon, I can’t express how much this post means to me. Despite having blogged a few weeks back that I was moving on, it’s apparent that in some respects, we never do. That’s because of the collateral damage. I have persistent headaches when I rarely ever had a headache pre-cancer. I recently had a CT-scan and what did they see? Lots of these little white spots, but because they were subcutaneous and not in the brain, they said it was a normal brain scan and I was fine. Whenever I mention that this, that or the other thing is a leftover from chemo, they say, no, it’s probably something else. They never want to admit that they damaged our health and quality of life permanently. I could go on and on, but suffice it to say, because of bloggers like you, I know I’m not alone. And P.S.: the neuropathy numbness is so annoying. xo

    Liked by 2 people

    1. I still worry about the significance of those little white spots. Having a brain that resembles Swiss Cheese combined with our other brain symptoms – the chemo brain, the headaches, the short term memory loss- just can’t be a good thing. I agree that no one wants to admit our long term problems are fallout from our cancer treatment. I agree with you about the neuropathy. Typing with 2 numb fingers is a complete drag.

      Liked by 2 people

  11. Thank you for this Sharon – we so need people to realize what is involved long term in our treatment for this hideous disease. It steals so much from us and unfortunately for our stage 4 sisters -sometimes their lives. We need a cure – we also need doctors to understand how long term these things are and we need better meds to cope with the long term effects. Keep writing and I know people will keep sharing!

    Liked by 2 people

    1. Yes I agree that this disease is a thief that steals so much from our lives, especially after treatment is over. More thought needs to be given to effective aftercare issues as most of us muddle our way post-treatment trying to figure out how to reach some sort of normal. Thanks for your insightful comments!

      Liked by 1 person

  12. Sharon, You are spot on!! I remember when I went through chemo and I would tell my Onco or the nurse about my side effects from chemo, their response would be, “this is from chemo, you know that. It’s normal.” But how do you fix it?!

    Often we talk about how much damage cancer does but we forget about how much damage treatments do. And yes, mental health post-treatments is such an essential part of survivorship. I personally have a much difficult time with survivorship than I do with treatments. Of course treatments aren’t easy, but for me I was in a “taking care of business” mode and now I need to deal with all aspects of life (sex, work, friendships, family, etc..) knowing I am a cancer patient.

    Sharon, you hang in there. Taking one day at a time is how we do it. I will add you to my prayers.

    Rebecca

    Liked by 1 person

    1. The aftermath of cancer treatments is something that truly needs more research and better follow-up care. The present system of cutting you loose for months at a time after treatment is over has us all suffering individually in silence as there is no map or plan on how to possibly find your “new normal”. Thanks for the good wishes and for adding me to your prayer list!

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  13. This is why I decided not to go though any more treatments after the first. So far lumps and bumps have been cut out but now I am at the point where they can not be so I learn to deal. Quality vises Quantity.

    Liked by 1 person

    1. That is a tough decision for many of us to make. As much harm as treatment has caused me, I feel obligated to do whatever I need to do until my children grow up. I may feel differently in a few years time. Thanks for lending your perspective to this discussion.

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  14. I was saddened to read this. My pal has been living with chemo brain and is ever hopeful that it’ll ease. So yes, I’m with you. Everyone is aware of breast cancer so let’s channel the funds into survivorship issues and metastic breast cancer.

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  15. I read this with a great appreciation for your writing because it led me through this battle that you and others have fought. I equated it to battle because I am familiar with collateral damage and the awful lifelong struggle of the wounded and psychologically damaged long after the battle is over. One of the hardest things one can do is live with a wrecked body and mind while remembering the heady days of youth and vitality. We feel diminished. The warrior must wear his or her wounds like a crown that cannot be lifted away. The unscarred avert their eyes, it doesn’t matter. What matters is you still hold yourself erect with dignity and grace in a world often bereft of it. Your writing removes the fear and teaches us that true humanity, of compassion, empathy, and love is not defined in our eyes by what we see but in the struggle to live and still be kind to others.

    Liked by 2 people

    1. Yes the damage and scars exist long after the battle is over. I will try to hold myself with dignity and grace although sometimes that is hard to do. Your message made me cry. Thank you for your profound and thoughtful words. They really mean a lot to me.

      Liked by 1 person

      1. You are a member of a small elite. You have my greatest respect and I know you will continue to go on and your message will continue to touch those of us that come here. I do have a small request. Smile. A lot.

        Liked by 2 people

    2. Oh my goodness!!! You speak my thoughts.

      There is just nothing normal aabout this is there?

      Not much of a life is it? Yay! Survival…

      Dianne Duffy (soon to be McGowan – more collteral damage with Mr.”divorce is not an option” right…)

      Liked by 1 person

      1. There is a lot of collateral damage left over for years and sometimes forever.Survivorship comes with its share of baggage.But life goes on, with or without you so I try to focus on my kids and dog to keep me going. Other things may work better for other people.

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  16. Sharon, really good post. Please add lymphedema to your list of collateral damage.

    I’m a medical professional as well as a breast cancer patient, and I am so frustrated by the lack of research into long-term side effects. We don’t even have a decent standard way to diagnose lymphedema, much less good information about how to prevent or treat it. Same thing with the other side effects you mention.

    I am also appalled by how many women have complications or poor results from reconstruction. I stayed bilaterally flat and am happy with my chest. I know my psychological journey was my own and I could not say flat would be best for everyone. I do wish it were presented as a valid option more often.

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  17. Hi Sharon
    The topic is not pretty but essential. I agree, let’s focus on the day to day battle of surviving Breast Cancer. I know your words educated many, words I hope are not needed in my life, We take what we are given and we decide how to live with the after effects. I love your tough as nails approach, so much we her on Women’s issues are sweet little pussy footing around messages. Let’s get real. I nominate you for President of Women’s Health.
    Hugs
    M

    Liked by 1 person

      1. Madame President
        You have the strength and passion to share what you learn. Go make it happen! I’ll vote for you no doubt. Start a charity, I’m in process of starting one to service childrens education and support for women and kids in shelters. I’m a minister so there is a long list of ideas once rolling.
        You can do anything Sharon, you are so kick ass and the support you can offer people is limitless. One focus came to mind while reading about the man who degraded his wife. Men know almost nothing about Breast Cancer and if a small percent of men change their thinking, the world took a small step. You are the person to drive the learning, support, individual and couples. Give it some thought. All you have to do in Texas is go to Sec of State site to get forms and read requirements.
        Push, Push…….
        Hugs
        M

        Liked by 1 person

      2. Sharon
        I’m always here for you. Whatever you need. I may not be able to help but I can listen. You are a very strong person with a loving heart taking joy from helping others. Keep the idea of starting a charity in mind. You can commit to as much time as possible. I hope to find a sponsor who will donate children books. My husband can build the small bookcases. The hardest part of starting a charity to me is writing the foundation, mission, what is your purpose. I’m an over achiever in my mind, my body just doesn’t allow. I want to expand the charity to help homeless, prostitutes, everyone, but that is a slow process. At 51 I have finally realized what is most important to me other than God. God put challenges in front of me that seemed impossible, he was teaching me strength. How to survive. When I lived a supuerficial life no matter how much money or jewelry or any other trinket never filled my heart. I was still not happy inside. In one short year blogging has put a mirror up and I’m never happier when helping someone. I don’t do well with letting people helping me, maybe some day.
        Sharon, you’ve had a tough bitch of a road to travel, you are a positive person, honest about your experiences and have a way with words people will listen to.
        I’m here if you need me.
        M

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      3. Are you doing well? You haven’t reblogged, I thought you might be in chemo.
        To start a charity I went to attorney generals office in Texas. It should be similar in your state. I did some snaking around and found the forms to register name, the IRS/tax free details I’m still looking at.
        Write me at msandorm@verizon.net to talk about health and what’s going on with blogging.
        I look forward to talking to you. We have a couple new members on team. It’s exciting.
        Talk to you soon.
        🙂
        M

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  18. Sharon, this is a completely awesome post. “Chemo brain” was my greatest fear and I talked about that fear in my Battling Breast Cancer blog series, too. I seem to have avoided it. I took alpha lipoid acid during chemo. I read that it would help with neuropathy, which I did have in my toes and fingers. It went away. I didn’t know chemo brain and neuropathy could be “forever.” I think the alpha lipoic acid supplement helped. My oncologist told me a couple of years afterward that she’d learned about it at a seminar. Glad I didn’t wait for her to hear about it. Instant menopause is another chemo “gift.” While all women go through menopause, the onset as a result of chemo is so abrupt. I wasn’t prepared for it, and maybe that knowledge could have made a difference. I knew about vaginal dryness, but not the ramifications of vaginal atrophy, which women don’t talk about. There are some things that could be helpful in restoring vaginal tissue, but they’re not available to women who are diagnosed estrogen receptor positive. So you end up terrified of getting into a relationship because you have been re-virginized and there’s nothing to be done about it (at least that the oncologist would condone). Dr. Susan Love discusses this in her Breast Book. Anyway, great post — but disturbing.

    Liked by 1 person

    1. Thanks for the vote of confidence! I think my best posts are the disturbing ones. I didn’t have instant menopause but I had chemopause and early menopause at 42. I haven’t heard of alpha lipoid acid before your post. I wonder if it is still helpful way after the damage is done? Thanks for some very enlightening information!

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  19. i to am a breast cancer survivor, just gone 2 years and my life has changed forever. I was one of the lucky ones who missed the chemo train but still i have chemo brain. never thought about it being related to radiation but always thought was from the anesthesic. whatever the cause can guarantee you it is very real. 😦 im in the process of getting reconstruction so your blog has given me food for thought, and yes i believe drs only focus on keeping u alive. if i had an informed choice and not just a plan invised by them then my treatment would have taken different path i believe. we are meant to b grateful but somedays this new me with her dementia brain, body image issues and lympodema arm finds that overwhelming to say the least.

    Liked by 1 person

    1. I hear you about the side effects and the “new normal”. Trust me you didn’t miss any good sights by not riding the chemo train. Just more of the same plus nausea, vomiting, and hair loss!

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  20. Wow, I had no idea that the ‘side effects’ are permanent and my heart goes out to you and all other cancer survivors who has to suffer through that.

    Liked by 1 person

  21. Sharon, It sickens me that your surgeon said that to your face… and frightening to read about your brain! My fingers, thumbs and all toes are numb full time, as well as my left forearm, the PN also causes nerve shock and other things. I’m quite used to both shoulders and back being numb from the mastectomies, but the fingers and toes are often disturbing and I trip a lot. I was told straight up that this could be permanent, which I appreciated knowing… mine is caused by treatments and also in part from spine surgery. Thank you for the shout out about Metastatic Breast Cancer… and thank you for your thoughtful, honest writing. xo

    Liked by 1 person

    1. It was a colleague who made the “hideous” remark but many medical staff commented on the bad reconstruction job and how I should get it fixed. The neuropathy makes it hard to type and I did a lot of writing on computers when I was working. I’m always happy to give a shout out for research into metastic cancer as it effects us all as we don’t always know in advance who will get it and who will be spared. Thanks for your comments here and on Facebook.

      Liked by 1 person

      1. That’s ok. I think he forgot for a moment who he was talking to as he was usually a sensitive guy (except about his wife’s breast cancer) and by extension, mine.

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  22. Sharon – too frighteningly true. I still haven’t figured out if we are not told some of the possible damage so that we don’t talk ourselves into some of it . . .or if it just doesn’t happen to everyone. I’ve had chemo twice – brain fog improved the first time and I think I agree that right now it comes and goes with fatigue. My greatest sources for information were the oncology nurses and a lot of on line information. I was lucky – the location and size of my breast tumor resulted in a lumpectomy with barely visible scars and one breast somewhat smaller than the other – not all that unusual under normal circumstances. However, dealing with lung cancer is opening up an entirely different set of issues. There are incredible variations of side effects – collateral damage if you will- and you are not really aware of the what has caused the problems until you start seeking answers. Chemo and radiation can cause numerous side effects and until you experience them you are not aware. I agree with your last thoughts as well. We are all TOO aware – we need a cure and help for the survivors.

    Liked by 1 person

    1. I’m sorry you are dealing with lung cancer now after breast cancer. I’m sure that opened another whole Pandora’s box of issues and side effects and damage. I just wish the money raised for cancer was being funneled into research of all kinds – better treatments, better survivorship resources, and of course, a cure. Take care and thanks for commenting.

      Liked by 1 person

  23. Sharon, Great and honest post. An ordeal to say the least.

    As a polio victim I too had a number of surgeries. But, I am the sort who needs to know all I am about to endure.

    I look to two sources in attaining that info. First my doctor-through whom I get the pre-op, post-op and all points in between. Then I go to God; since He already knows what I am about to undergo, as He dealt with it on the cross. That being the aftermath which may be making its effects know sometime down the road.

    In the doctor’s hands, I leave my confidence. But in God’s hands, is where I leave my trust.

    Pain and suffering borne well does not go unrewarded.
    -Alan

    Liked by 1 person

    1. Thank you Alan for your comments! I knew years ago that doctors don’t have all the answers but part of me still wishes I believed they did. God has the answers but is sometimes slow on passing this information onto me. Your last line gives me great hope.

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