Sunday, March 19, 2017

COMMUNICATING WITH A CHEMOBRAIN

As some of you may have read in my prior post, I'm undergoing a rather massive life change. This, however, is not about that. At least not directly. Actually, I believe it goes right back to the beginning. To the reason I launched this blog. To talk about the silliness of chemobrain.

Except, this is not going to be about silliness. It's going to be about the difficulties I experience when I'm communicating in real time and what happens when conversations become serious and important. To say that there has been lots of important communication in recent months barely scratches the surface. Plenty of people get very frustrated when they try to communicate with me because it has become too easy for me to meander into the weeds, and then, get stuck in those weeds. This becomes a bigger issue when the conversation demands I return to the original statement. Without being guided out of those proverbial weeds and reminded of that which has already flown out of my mind, this is a problem.

The quick primer. We have long term memories and short term memories. For me, long term memories seem to have taken less of a hit than my short term memories. Many of my long term memories seem to have become more vivid with time. Is this because my brain has more free space because I'm dropping other memories? No clue. I read the research. I know different parts of the brain have different functions so I can't state that the increased clarity in my very old memories is for any reason at all. No science, therefore, no speculation or suggestions. Just an observation.

Sometimes, I am able to recall in great deal an event that occurred in recent days or weeks. Sometimes, it's as if the event never even happened. Other times, it crystallizes and when that happens, fragments of the crystal may fall off the memory. Since the short term memories are frequently what builds on the day to day responsibilities, this can be a real problem. Perhaps this is best explained like this. I might have had a discussion with someone, promised I would have something done, wrote it down, buried the "to do" list with a bunch of other things and a snippet of that memory jolts back into my brain. What happens next is I turn all of my paperwork upside looking for the note to remember exactly what I was supposed to be doing.

Then, there is working memory. Working memory is what is happening in real time, right now. As I'm typing this post and trying to capture the thoughts in my head to put them down on paper. I journal ALOT. I don't want to lose important snippets of things. I write notes. Also, ALOT. I try to do this when I'm on a conference call or really, any type of call that is of importance, whether it involves the work I am doing or for a personal matter that must be brought to an acceptable resolution. If I am sitting in a meeting, and I wish to ask a question, I write notes and I frequently write out the question before ever lifting my hand to indicate that I'd like to ask something of the speaker.

I haven't read much of the most recent research, primarily because there isn't anything that I've seen that is going to change the circumstances for me in this moment. It's not that I don't care, because I care deeply. It's just that there are only so many hours in a day and when it's already taking eight hours to accomplish what should be done in under three hours, life can be a challenge. With that caveat, everything about chemobrain was pointing to working memory and those so called "work around solutions." Use your phone calendar for EVERYTHING. Keep To Do lists (not helpful, I currently have about six, four of which I can't locate). Keep your work area tidy (also not helpful if I'm forced to switch gears quickly, things pile on top of each other). Plenty of others, but since that's not the reason for this post, I'll leave that right there.

The absolute WORST thing that can happen when someone lives with this shitty condition is to badger them during a conversation. I know that people, even people who know the problem exists, can get very frustrated when trying to carry on a conversation. I know that, like mental illness, chemobrain is a disease of the brain in some form or another. In other words, even though others may have accepted this, or say they understand, there may be far too times, they truly don't understand. And honestly, I get it. There's no pill, there's no surgery, there's not even therapy interventions that have shown any promise. When you can't produce a medication, or show the surgical scar, or demand your therapy notes as proof, we may be dismissed as having "convenient" memory lapses, or even worse, of outright lying.

Instead of calmly saying, "Don't you recall saying this....." let me give anyone who is living with a person suffering with chemobrain a word of advice. Shouting, making accusations, demanding responses is not only unhelpful, on many levels it's cruel. We get the frustration you are feeling and trust me, our frustration is on the same plane as yours. I'm trying not to make this into a competition. In the spirit of understanding both persons are feeling the frustration, I don't want to say I'm in worse shape because I have a disability. I will say that I feel like I am at a terrible disadvantage when conversations are necessary for clarification and I'm not given the time to pause, truly understand that we are on the same page and then respond, AND HERE's the KEY... to the best of my ability and to the best of my recollection in that moment. Sometimes, it will be hours later and I will recall an important piece of information because of my journals or because I've had the time to sit quietly and reconstruct a series of events. By that time, it's too late to revisit the discussion.

I am not Mother Theresa or any other saint. I have made plenty of mistakes along the journey known as life. I do my best. I try. I give it my all, or I don't do it. If I'm not capable, I'll be the first to say thank you, but that's above my pay grade. I'm not all that, I don't proclaim to be all that. I'm just me. AnneMarie.

I'm also not a liar. I was raised with integrity and honor ingrained in every fiber of my being. I have embraced the philosophy of those who are guiding me through this present maze. Live authentically. Let the truth be the foundation upon which I stand. Be honest when loved ones ask me questions, no matter how much it may hurt to speak a truth about a wound from which blood is still flowing freely. But I do this. Every day, I do this.

And yet, I'm still badgered. I'm still presumed guilty until I can prove otherwise. I'm in quite a mess. And although I know the knee jerk response, especially from those who get it will be, "Ignore those people." There are some I can (and I do ignore) and there are some I can't. There are persons who mean far too much to me to write off.

When I must have those conversations, and I must share the truth, please, give me the chance to speak. Please allow me the moment to pause, and don't think it's because I'm angling for a way of responding to cast myself in the best possible light.

I'm simply trying to remain honest, to be true. Please. Be gentle with words, with tone and just be patient. No I am not the same. I'm living in a stressful situation and being badgered for answers to questions can drop me to my knees, bring me to tears, and create terrible distress.

If you happen to be close to someone who has the problems I live with, and you recognize yourself in any of these words, I implore you to try to understand the communication dynamic and to have a bit of empathy. No shouting. No demanding answers. No cutting the person off mid sentence. No patronizing. A simple, "Time out, that's not what we are talking about," will suffice. And, if the person feels there is other information that speaks directly to what is being discussed, give them a chance to say what's on their mind. When that takes them into those weeds, help guide them out.

I can't speak for all, but I can speak for many. Our actions are not deliberate. They are not to undermine. They are not to cause harm. They are not to frustrate.

Simply stated, in any given moment, it may be all we got.

And just because we do have days of complete clarity, know this. Those days are gifts because in this world, in my chemobrain world, they are far and few between.

Most days, I struggle for clarity. Presume I'm struggling. Don't back me into a corner because once there, whatever bandwidth I DID have for a productive conversation has since flown right out the window.

Not looking to upset anyone, but this is me, in 2017. My last round of chemotherapy, specifically CMF (the mild chemo), was exactly ten years ago. March 20, 2007. It definitely worsened over those first few years. Today, it's stable but there's been not one iota of improvement. Said another way, it seems this new way of life is permanent.


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37 comments:

  1. As someone also dealing with "chemo brain" while trying to start my first blog, I applaud you for saying all of this out loud! Even my Oncologist believes chemo brain is something that goes away the further from treatment you get. This is simply not the case. I experience all you have described here and issues with word recall, and concentration. I can no longer multitask the way I used to, and now, trying to stay on topic when I write is extremely difficult. I keep having to walk away and revisit my writing later, and by then the point I was trying to make is lost. Like you, I have notes everywhere, and then deal with the frustration of not finding the one I need when I need it. With many more people "surviving" Cancer these days, there has been insufficient research in this area and I hope the more vocal we get about it the more progress will be made. Thank you!

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    1. Thank you, Janis. Sometimes the simple act of validation can help in the most frustrating moments. It doesn't make it better, it just makes us pause and remember there are people who do understand. Thank you for allowing me to hit my pause button. Yes, to research and I know there are a growing number of researchers in this field. Hoping for better progress than, "Always put your keys in the same place."

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  2. Very well written and understood. I had head injury, additional to chemo-brain. My prayers are with you!!!!

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    1. Hi Mary,
      Ok.. so that's a definite double difficult issue. I know a bit about head injuries and TBI. I know there is lots of crossover in some of the symptoms. I can't imagine adding anything more to the mess in my brain. Be well, friend. ~AnneMarie

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  3. This describes me all too well: lost to-do lists, note taking (especially if I need to make a point or ask a question if someone speaking), my train of thought getting derailed by someone interrupting me. Thankfully my husband has learned when I say "never mind" it's because my thoughts are just completely gone and it's not out of spite or anger. Sometimes he can help me remember, most times he cannot. My analytic engineering brain is shot. I was once able to tell anyone exactly what was going on with several dozen projects at any given time. Now, I can remember (and not always well) the important project of the day but that's about it. And rememebering names of people I meet? Not anymore. It sucks. It really sucks. I also had CMF - 6 rounds on 2 different occasions. Not to make you feel worse, but my last round was in April 1994 - I was still relatively sharp but have declined since hitting my mid 40's. It's stabilized now but I'll never be like I once was. So you are not in this alone, kiddo. You got company. xoxo

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    1. Hey Ellen,
      I've resigned myself to the fact that this is as good as it's gonna get. I've not seen much further decline but taking 8 hours to do 3 hours worth of work is kind of, well.. ENOUGH!!! Sometimes I am able to analyze things but I can't get them to "gel" in my brain in a cohesive manner, then, I lose the whole thought and done. I'm grateful that your husband is helpful. That makes me smile. Mine wasn't. He just ran around telling everyone, "she was never the same after cancer." It made me nuts. DUH.... see previous post. That's one of a long list of reasons why I am here today. xoxo

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  4. As I mentioned to you it's been 28 years of dealing with what it appears to be a secret society of sufferers understands.....Well written, you speak for too many...............

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    1. Wayne -- "Secret social of sufferers" thankfully not so secret anymore, although still very much understood by those who haven't experienced this. Makes me want to scream when anyone tries to minimize things with that too often heard statement, "I didn't have cancer and I do that, too... so what's MY excuse." Thanks for jumping on over here. We will pick up our conversation as soon as I clear up a few other things!! ~AnneMarie

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  5. Oh AnneMarie you can see right into my soul! You described my experience so eloquently. I spend a lot of my working life making presentations, so chemo-brain is an added stressor for me. To know I am not alone is a great comfort. Thank you for writing this.

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    1. Thank you for such kind words and for sharing this on your weekly round up! Personally, I think the knowledge that there are others who DO understand and can relate on such a deep level is one of the most helpful things for all of us. We continue to work through the stressors (and in my advocacy, I can get freaked out if I have to speak, fearing I will go off topic and make a total fool of myself -- I I totally relate to that!!!). Love, AnneMarie

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  6. Thanks for sharing your experiences of chemobrain

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    1. Thank you for letting me know you read this and I hope, resonated! ~AnneMarie

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  7. This experience this Chemotherapy just rewrote all of our adult minds to gibberish.

    No matter how much doctors, nurses the medical staff assure you will be normal.

    My standard answer, “I am not normal now. Define normal? I dare you.”
    Let me explain to you medical people. My mind that I have honed since I was conceived is destroyed.

    They state, “You are alive.”

    “Yes I am alive, but for what purpose?”
    Silence for that question.

    Yelling at the medical people “Just great I have more in common with a three year old child who awakes for another day adventure since the recent past is in my Chemo-brain induced fog world.”
    More silence

    Think about this quote from Carl Sagan “Knowing a great deal is not the same as being smart; intelligence is not information alone but also judgement, the manner in which information is coordinated and used.”
    Still more silence
    Just Great! Let me explain “My anchor my family accept that I am crazy now. I grab the Chemo-brain dragon every day to bend it to my new mind.”
    By the above statement about ten years ago I awoke to a new ability ‘Drawing.”
    My greatest previous attempts before chemo-brain fog were at the hang man stick figure stage.
    I state “Ahh …Chemo-brain trickster bizarrely rewrote my new neural synapsis” to the medical people
    medical people staring at me then asking “Evidence?”

    My new path is http://www.scbwi.org Society of Children’s Book Writers and Illustrators.
    Click on Illustrators Gallery then due a search under my name Michael C Reidell
    “Not possible” from the medical people
    “B.S. I see the drawings. I dream in the drawings. I am in the drawings. Explain it to me since it is driving my life now!"

    Still more silence from the medical people

    My three year old gleefully whispers from my shoulder into my ear “All right time to draw.”
    Everyone with Chemo-brain there is hope.
    You just have to find the new three year old path for you.



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    1. Hi Mike,
      Thanks for this and my apologies for taking too long to post it. I had to moderate comments on posts over a week old. I began to see all sorts of spam on very old posts. And, yup, chemobrain --- I didn't get around to getting this comment released. So, I'm posting both of your comments..... it sorta speaks directly to what this post is all about. My best, AnneMarie

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  8. This experience this Chemotherapy just rewrote all of our adult minds to gibberish.
    No matter how much doctors, nurses the medical staff assure you will be normal.
    My standard answer, “I am not normal now. Define normal? I dare you.”
    Let me explain to you medical people. My mind that I have honed since I was conceived is destroyed.
    They state, “You are alive.”
    “Yes I am alive, but for what purpose?”
    Silence for that question.
    Stating to the medical people “Just great I have more in common with a three year old child who awakes for another day adventure. The recent past is in my Chemo-brain induced fog world.”
    More silence
    Think about this quote from Carl Sagan “Knowing a great deal is not the same as being smart; intelligence is not information alone but also judgement, the manner in which information is coordinated and used.”
    Still more silence

    Let me explain “My anchor my family accept that I am crazy now. So I grab the Chemo-brain dragon every day to bend it to my new mind.”
    By the above statement about ten years ago I awoke to a new ability ‘Drawing.”

    My greatest previous attempts before chemo-brain fog were at the hang man stick figure stage.
    I state “Ahh …Chemo-brain trickster bizarrely rewrote my new neural synapsis” to the medical people

    Staring at me then asking “Evidence?”
    My new path is http://www.scbwi.org Society of Children’s Book Writers and Illustrators.
    Click on Illustrators Gallery then due a search under my name Michael C Reidell

    “Not possible” stated on of the medical people
    “B.S. I see the drawings. I dream in the drawings. I am in the drawings. Explain it to me since it is driving my life now! ”

    Still more silence from the medical people

    My three year old gleefully whispers from my shoulder into my ear “All right time to draw.”
    Everyone with Chemo-brain there is hope.
    You just have to find the new three year old path for you.



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  9. Wow! I cannot tell you how thankful I am to have stumbled across your page! I finished chemo in 09 and I'm still struggling with chemo brain. I recently determined this was the issue because before I always found a reason to write certain instances off. I am now trying to get testing accommodations for the LSAT and my oncologist is shaky at best. I'm not really sure that he'll sign the necessary paperwork. After reading your post I can now add more to my personal statement! There were so many things that I couldn't put into words are articulate. After reading your post you hit it right on the head! I am so appreciative that you and others here are actually willing to discuss this! I'm not sure that my oncologist believes it's still an issue thus far out and my friends and family just kinda give me the side eye. I'm not sure if they believe me or not. This is my first time stumbling across your page but I'll be back! Thank you!

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  10. Wow! I cannot tell you how thankful I am to have stumbled across your page! I finished chemo in 09 and I'm still struggling with chemo brain. I recently determined this was the issue because before I always found a reason to write certain instances off. I am now trying to get testing accommodations for the LSAT and my oncologist is shaky at best. I'm not really sure that he'll sign the necessary paperwork. After reading your post I can now add more to my personal statement! There were so many things that I couldn't put into words are articulate. After reading your post you hit it right on the head! I am so appreciative that you and others here are actually willing to discuss this! I'm not sure that my oncologist believes it's still an issue thus far out and my friends and family just kinda give me the side eye. I'm not sure if they believe me or not. This is my first time stumbling across your page but I'll be back! Thank you!

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    1. I would suggest you take a look at Idelle Davidson's website and book. She may have some info for you to help getting proper accommodations for the LSAT. My best to you and if you wish, suggest your oncologist look up the research of Tim Ahles (MSKCC), Mark Noble (Rochester) and Patty Ganz (UCLA). There are plenty of others but I think those three are the pioneers. Look up the twin study Tim Ahles did using functional MRI and ask your oncologist to reconsider his position!!! Good luck and let me know what happens. I care. ~AnneMarie

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    2. I will look into all of your suggestions and I'll be sure to let you know the outcome. Greatly appreciated!

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    3. Hello AnneMarie, I have posted to this particular blog before. You give such great information here, especially this latest information about the research done on this. I wanted to let you know that I have continued to work on my own blog discussing the many side effects of cancer treatment from my own perspective and chemo brain even years after treatment. Here is a link to my blog, and at the bottom of my page I list some of my favorite blogs on the subject and yours is one of the first I posted about. Thank you for posting such great information!

      https://eyeinthecamera.blogspot.com/

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    4. Hi Janis,
      Thanks to a combination of chemobrain, moving, being out of town for half the month of April, making some major life changes and now, preparing to sell the home where I raised my family for the past 20+ years, your comment went unnoticed until now. I hope you are following the comment responses because I wanted to say thank you for sharing your experiences with me here, and on your blog, too.

      ~AnneMarie

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  11. I'm so happy I ran into your blog ! (found it in the article "The Best Breast Cancer Blogs of 2017) as you say in a comment that the simple act of validation makes us pause and remember there are people who understand. I finished my 6 treatments of TAC chemo back in May of 2004. That was 13 years ago and today reading your blog was the first time I read that others continue to live long term with chemobrain. So this wasn't a "pause and REMEMBER" for me it was a "Pause and HEAR FOR THE FIRST TIME" and tears stream my face as I read your blog and others comments. I've heard all those comments mentioned as well - ...But you're alive, You'll be back to normal in a year (what's wrong with me that I'm not back to normal goes through my head) or the "I do that to and I haven't had cancer, what's MY excuse?" The big impact on me has been my brain just going blank, running around and around in circles and can't find a single thought. When I'm stressed or under pressure it really kicks in. Or if I haven't had enough sleep (7.5 to 8 hrs) or not enough water and good food. The embarrassment of sitting there with an empty mind and no idea how to respond to the question or to finish my sentence. It's like it just freezes up. Reading your blog did not of course fix my chemo brain freeze but for the first time in 14 years I know that I am not alone. From the bottom of my heart...THANK YOU!!!

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  12. I'm so happy I ran into your blog ! (found it in the article "The Best Breast Cancer Blogs of 2017) as you say in a comment that the simple act of validation makes us pause and remember there are people who understand. I finished my 6 treatments of TAC chemo back in May of 2004. That was 13 years ago and today reading your blog was the first time I read that others continue to live long term with chemobrain. So this wasn't a "pause and REMEMBER" for me it was a "Pause and HEAR FOR THE FIRST TIME" and tears stream my face as I read your blog and others comments. I've heard all those comments mentioned as well - ...But you're alive, You'll be back to normal in a year (what's wrong with me that I'm not back to normal goes through my head) or the "I do that to and I haven't had cancer, what's MY excuse?" The big impact on me has been my brain just going blank, running around and around in circles and can't find a single thought. When I'm stressed or under pressure it really kicks in. Or if I haven't had enough sleep (7.5 to 8 hrs) or not enough water and good food. The embarrassment of sitting there with an empty mind and no idea how to respond to the question or to finish my sentence. It's like it just freezes up. Reading your blog did not of course fix my chemo brain freeze but for the first time in 14 years I know that I am not alone. From the bottom of my heart...THANK YOU!!!

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    1. Definitely **not** alone! I remember the very first time I heard some of the things that might happen. I was on a CancerConnect info call and the brilliant Tim Ahles and Patricia Ganz were talking about certain very specific things. I can recall the jaw drop and didn't know whether to laugh or cry (or put my fist through a wall for all of the skeptics who said some of those things to me.....) --- validation helps. It doesn't resolve the problem, but it surely does enable me to filter out the noise of those who continue to badger or feel the need to INVALIDATE my issues. Thank YOU for sharing your feelings with us here!!

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  13. Great article. very well written. Also congrats for being one of the best articles for breast cancer blogs.

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    1. Thank you, Anuj!! And thanks for the congrats. I'm humbled at the honor of being included on Healthline's list again.

      ~AnneMarie

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  14. Hello, AnneMarie. I posted a while back about getting testing accommodations for the LSAT. I was able to get my doctor to compete the forms, I think reluctantly, but the letter is sketchy! It really doesn't say much. I think it's half @ssed. Someone suggested that I have a neuropsychological battery exam. It's looks pricey and it doesn't look like insurance covers it. This is probably a long shot but would you suggest I go this route, or do you know of anything else I could submit? People I've talked to that have received accommodations make it seem like test results are crucial to getting accommodations. I don't currently have any test results to submit. I just have the docs required and a janky letter from my oncologist. Anything from you or anyone in the forum would be greatly appreciated!

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  15. http://yourbrainafterchemo.blogspot.com/p/you-may-qualify-for-work-accommodations.html

    You will likely have to cut and paste that into your browser. It's from Idelle Davidson's blog and goes above and beyond what you may need at this point in time.

    As for the evaluation, yes, they can be expensive. The most important thing is to make sure you have the tests done by someone who is familiar with the nuances of chemobrain issues. Often, the deficiencies won't show up unless the person doing the testing knows what tests to perform.

    I would submit what you have and I would print out some of the supporting research.

    http://www.medscape.com/viewarticle/857425?pa=C50e8Twt6ZQ5pTBZ3K0WfURpExLu567VG7SGhHbIvCaQFZdSzcos7AMVmB12Nm34cFrqow%2Bf2%2F37XuRaZT6JAA%3D%3D

    http://www.medscape.com/viewarticle/822443

    Try those links for starters. Email me if you want to (ahem) "brain"storm this a bit more anncicc@gmail.com

    -AnneMarie

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  16. very nice information which you shared. You also a good writer about Breast Cancer

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  17. This is an amazing blog on matters to do with cancer keep it up.

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  18. amazing blog about chemobrain

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  19. I'm taking ANASTROZOLE (my cancer was discovered in Sept 2016, both breast removed, 1 lymph knob and bypassed cemo (optional) then 28 rounds of radiation. Taking Anaztrozole and having so may side effects. Also concerned as recently (a couple of weeks ago ) found blood in my urine but no infection, going back to doctor next week for the blood in urine. I am trusting my doctors, a learning experience and scary. Any feedback about the Anastrozole and those taking it is appreciated.

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  20. Yvonne L. WilliamsJuly 20, 2017 at 3:33 AM

    Thank you! I totally related to everything you communicated. I have been searching all over for some answers, validation, acceptance, etc. My Family members get frustrated with me in conversations. I just shared the article with them (@3:30 AM), to see if that will help resolve some of our frustrations with communicating. Again. Thank you for sharing.

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  21. Everything is very open wih a really clear clarification of the challenges.
    It was definitely informative. Your website is useful. Thanks for sharing!

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