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Update on my wife for those who missed the comment in other thread.

ssbn655ssbn655 Member Posts: 1,889 Arc User
30 July 2019
We finally received the results from Mayo Clinic on of all days her birthday the 30th. It is not good.
I will not pull punches and sugar coat this.
Denise has a rare in postmenopausal women aggressive cancer called rhabdomyosarcoma. It is a soft tissue cancer in her uterus. She is facing chemo, radiation and surgery followed by more chemo and radiation. The long term outlook is not great 40 odd percent past five years. They cannot operate now as the surgery itself would spread the cancer through her body.
Thank you all for the kind words and thoughts. We will get through this and I know we will have many years together after this battle.
Much love to you all
Freya
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Comments

  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    Update on my wife's condition.
    I am not going to pull punches. It is not good. Mayo Clinic finally finished the DNA sequencing. She has an aggressive and rare in postmenopausal women soft tissue cancer called rhabdomyosarcoma. Denise is facing chemotherapy, radiation therapy and then surgery when the tumors shrink. If the operated now the surgery would spread the cancer through her body. The odds are not good for long term survival long term being more then five years. My world is falling apart and I am powerless to stop it.
    Freya
  • asgard47asgard47 Member Posts: 20 Arc User
    I don't know the story, but my best wishes are with both of you.
    .
  • wingedhussar#7584 wingedhussar Member Posts: 118 Community Moderator
    Sorry to hear that, man, that sucks. I'll be praying for the two of you.
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  • rndflactuationrndflactuation Member Posts: 727 Arc User
    I am so sorry, was thinking of you and your wife and hoped for a better outcome. I still hope the therapy will help shrinking the tumor so it will be successfully operateable and anyway wishing for better days for you both. Be strong.

    Again I'm sorry I can't find the right words, and the current situation of yours I can't even understand, but I hope things will go for the better and that no matter what happens you will both get strong and capable to handle life and even able to have some joy in the way and have as long time as possible together.
  • reyan01reyan01 Member Posts: 12,800 Arc User
    Can't imagine what you must be going through or how you must feel, but thoughts with you nonetheless - best wishes x
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  • theraven2378theraven2378 Member Posts: 5,647 Arc User
    Stay strong, both of you.
  • valoreahvaloreah Member Posts: 10,270 Arc User
    Many prayers for both of you. Stay strong.
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  • jamieblanchardjamieblanchard Member Posts: 402 Arc User
    I'm very sorry to hear that. =( For what it's worth, we're all here for you if you need a shoulder to lean on.

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  • lordgyorlordgyor Member Posts: 2,561 Arc User
    I wish your wife the best and I suggest keeping on idea of the latest developments in cancer research. There is promising developments like immunotherapy, Microrobots , and others.

    https://www.sciencedaily.com/news/health_medicine/cancer/

    There is reason to have hope.
  • echattyechatty Member Posts: 4,535 Arc User
    Oh, I am so sorry to hear that. Many hugs being sent your way.

    Many prayers going out for her survival and may she beat the odds.
    Now a LTS and loving it.

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  • coldnapalmcoldnapalm Member Posts: 7,629 Arc User
    Well...S***.

    The best advice I heard is something I was told when my friend's kid had leukemia. The doctors told him he may have 2 years, but his reply was it could be 2 years or 2 days or 20 years. Nobody really knows for sure. That makes his life no different than mine other than he has a better chance of knowing what will kill him in the end. Smart kid. But chemo and radiation is hard. Best wished and best of luck.
  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    We are taking it one day at a time. We spend a lot of time snuggled up together more then we have in a very long time. In a way it has actually brought us a lot closer. I will not lie I am terrified of losing her. If I had to describe how I feel I am screaming at the top of my voice trying to force back a Catagory 6 Hurricane while crying with just my voice. I feel powerless and I am not sleeping much I have my laptop set up so I can watch her sleep to burn her face into my mind just in case this ends up with her gone. Every word laugh cough snore is being burned into my mind so I will never ever forget anything about her if it comes to that. Thank goodness I was already in therapy for my transition. I have a great therapist there that has helped a lot with this situation.
    My wife has access as well to a therapist but hasn't taken advantage of it yet. I hope she does soon. I think ,no make that I know she is in denial still and thinks she is going to waltz through this TRIBBLE storm. That comes from her being a career RN all medical field people think they are bullet proof.
    Our family knows the odds have accepted that she may not be around for much longer even with treatment that's how aggressive this type of cancer is as far as we know it has not metasized so that is a plus mark on our side. The family is a great support team as well and our daughter is an RN and the granddaughter a nurses aide. My own son is taking a paid leave of absence from work from September to January and flying out here to stay for it. This will help with the driving back and forth to her therapies a 5 hour drive one way. So we have a team of drivers my daughter, son, myself and our grand kids. We live way out in the middle of no where.
    This game has always given me a break from things and it will continue to and with all the great people pulling for us we will beat this demon and get my wife back healthy and full of life.
    Thank you all
    Freya and Denise
  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    coldnapalm wrote: »
    Well...S***.

    The best advice I heard is something I was told when my friend's kid had leukemia. The doctors told him he may have 2 years, but his reply was it could be 2 years or 2 days or 20 years. Nobody really knows for sure. That makes his life no different than mine other than he has a better chance of knowing what will kill him in the end. Smart kid. But chemo and radiation is hard. Best wished and best of luck.

    Every day minute hour we have together is a treasure from now on. We don;t know where this path is going but we are on it to the end no matter where it goes. If nothing else this is a test for both of us. When we emerge from this forge we ll will be stronger and better then when we went in.
    Freya
  • mustrumridcully0mustrumridcully0 Member Posts: 12,554 Arc User
    I wish you and your wife the best. There is unfortunately no real good, helpful advice I could offer. Just try to make the best out your situation and maybe do a few nice things together you might have otherwise waited for when "things calm down" or whatever excuses we use to hold off on doing these nice things. (Extra snuggle and cuddling time qualifies.)
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  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    Update:
    After what seems like endless trips to the Cancer Center in Hays, Ks. the chemodrugs have been figured outat least in theory what they drugs are may change depending on some tests to see if she has a negative reaction to them. Today she gets her portacath implanted that is a device under the skin that makes it a hell of a lot easier for chemo treatments and allows a faster infusion so it's not as grueling at least that is how they have explained it to me.
  • jonsillsjonsills Member Posts: 8,660 Arc User
    I mean, it's still not fun, but it's easier on the body than all those separate IV punctures. My dad had one; unfortunately, pancreatic cancer often doesn't show symptoms until well after it's metastasized, so by the time he knew it was basically too late for chemo to help, but at least it made things easier on his body while they were still fighting it.

    For what it's worth, I'm praying for your wife's recovery. And you be well too! (No use getting her better, only to find you've destroyed your own health, ya know?)
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  • fmgtorres1979fmgtorres1979 Member Posts: 1,326 Arc User
    edited August 16
    May you, and your family, find the strength you need to withstand whatever is thrown your way.
    It's a cliché that positive thinking brings positive things, but it also real. Don't give up, don't focus on what you can lose, focus on what needs to be done to win. I know talking is cheap, but fight, fight even when you feel you can't fight any more.
    Post edited by fmgtorres1979 on
  • colonelmarikcolonelmarik Member Posts: 1,562 Arc User
    My mother endured and survived a similar cancer years ago. She's now approaching 80 and is in good health... so it can be beaten. Hold fast, and stay strong together.
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  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    Update: August 31 2019
    Good part Wife has had a portacath implanted this is a device that helps prevent damage to veins from chemo and also allows a faster rate of infusion of those meds.
    The bad part due to a stupid rule her chemo has been delayed by her medicaid insurance because we have 125 dollars OVER the allowable limit. This idiot is saying you have 125 dollars over the cutoff in your bank so you reapply but in the mean time just go off and die.
  • coldnapalmcoldnapalm Member Posts: 7,629 Arc User
    ssbn655 wrote: »
    Update: August 31 2019
    Good part Wife has had a portacath implanted this is a device that helps prevent damage to veins from chemo and also allows a faster rate of infusion of those meds.
    The bad part due to a stupid rule her chemo has been delayed by her medicaid insurance because we have 125 dollars OVER the allowable limit. This idiot is saying you have 125 dollars over the cutoff in your bank so you reapply but in the mean time just go off and die.

    Sounds about right for insurance...be it government or private...albeit for different reasons. When I was on medicare, I had them deny me an x ray when my hand was crushed by a machine because it was not a neccessary procedure. Yeah my hand is crushed and finding out what is or is not broken is not needed...k. Had to pay 4 grand to get the x-ray so the medicare doctor could fix my hand. On private insurance, I have an allergic reaction to a generic medication but not the name brand one...but I can't get the name brand one...just the generic...which I can't take. So you know, I can just die or pay 180 dollars a day for the medication I need.
  • SystemSystem Member, NoReporting Posts: 177,996 Arc User
    This discussion was created from comments split from: Please sell Summer event Reputation Vouchers like other events..
  • baddmoonrizinbaddmoonrizin Member Posts: 6,420 Community Moderator
    Split off comments from the other thread and merged them here to allow those thoughts to continue along here together. /Merged
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  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    Split off comments from the other thread and merged them here to allow those thoughts to continue along here together. /Merged

    Thank you baddmoonrizin.
    There are days I just want to scream at the top of my voice at everyone, others it's all I have to keep from breaking down and crying all day.
    Everyone here have been so supportive that when combined with my real life friends I don't feel alone in the wilderness so to speak.
    The real hard part is not loosing it when I am with Denise and she is having a bad day with the nausua and pain. She hardly eats anything says everything tastes bad sleeps most of the time. I can't fool myself into thinking this is normal. I really am starting to think she will not survive this and If she doesn't I have no idea what will become of me.
    Freya
  • coldnapalmcoldnapalm Member Posts: 7,629 Arc User
    ssbn655 wrote: »
    Split off comments from the other thread and merged them here to allow those thoughts to continue along here together. /Merged

    Thank you baddmoonrizin.
    There are days I just want to scream at the top of my voice at everyone, others it's all I have to keep from breaking down and crying all day.
    Everyone here have been so supportive that when combined with my real life friends I don't feel alone in the wilderness so to speak.
    The real hard part is not loosing it when I am with Denise and she is having a bad day with the nausua and pain. She hardly eats anything says everything tastes bad sleeps most of the time. I can't fool myself into thinking this is normal. I really am starting to think she will not survive this and If she doesn't I have no idea what will become of me.
    Freya

    So when she feels nauseous and have problems keeping food down, try this...

    1/2 cup yogurt. Greek if you can. Highest fat content she can manage (you want the calories).
    1/4 cup blue berries...fresh is better but frozen if you can't...let it come to room temp.
    1/4 cup grapes...room temp
    1 handful spinach...room temp
    spash of fruit juice...apple works best but really any you can keep at room temp
    1 scoop protein powder.

    Blend in a blender. It will looks like a smoothie...because it basically is one...but don't drink it. Eat it with a spoon like a soup. Fast infusion of food when you feel sick in the stomach will just make it worse. Slow and steady.

    So the reason to keep stuff at room temp is that cold foods can tighten the stomach muscles and cause cramps while you are on chemo. And makes you less likely to want to eat after. The mix also has a good amount of nutrients while blending things makes it easier to eat when everything tastes bad. And with the mix of sugars and fat, you can combat the tastes bad issue somewhat as well...but the protein powder can set that off something fierce at times...in which case, just leave it out. Better she eat something instead of throwing up a good balance of nutrients and getting nothing at all. It's one of the few things that my friend's son would eat when it got bad.
  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    coldnapalm wrote: »
    ssbn655 wrote: »
    Split off comments from the other thread and merged them here to allow those thoughts to continue along here together. /Merged

    Thank you baddmoonrizin.
    There are days I just want to scream at the top of my voice at everyone, others it's all I have to keep from breaking down and crying all day.
    Everyone here have been so supportive that when combined with my real life friends I don't feel alone in the wilderness so to speak.
    The real hard part is not loosing it when I am with Denise and she is having a bad day with the nausua and pain. She hardly eats anything says everything tastes bad sleeps most of the time. I can't fool myself into thinking this is normal. I really am starting to think she will not survive this and If she doesn't I have no idea what will become of me.
    Freya

    So when she feels nauseous and have problems keeping food down, try this...

    1/2 cup yogurt. Greek if you can. Highest fat content she can manage (you want the calories).
    1/4 cup blue berries...fresh is better but frozen if you can't...let it come to room temp.
    1/4 cup grapes...room temp
    1 handful spinach...room temp
    spash of fruit juice...apple works best but really any you can keep at room temp
    1 scoop protein powder.

    Blend in a blender. It will looks like a smoothie...because it basically is one...but don't drink it. Eat it with a spoon like a soup. Fast infusion of food when you feel sick in the stomach will just make it worse. Slow and steady.

    So the reason to keep stuff at room temp is that cold foods can tighten the stomach muscles and cause cramps while you are on chemo. And makes you less likely to want to eat after. The mix also has a good amount of nutrients while blending things makes it easier to eat when everything tastes bad. And with the mix of sugars and fat, you can combat the tastes bad issue somewhat as well...but the protein powder can set that off something fierce at times...in which case, just leave it out. Better she eat something instead of throwing up a good balance of nutrients and getting nothing at all. It's one of the few things that my friend's son would eat when it got bad.

    Thank you we will give that a try. Found something that worked today by accident. I had some left over veggie pizza and had put a splash of siracchha on it, She asked for a slice and she actually found it tasted great/ She ended up eating two big slices the most she has eaten in three days.
  • valoreahvaloreah Member Posts: 10,270 Arc User
    Ginger is excellent for nausea. Either as a supplement in pill form, raw or you can usually find dried ginger in the supermarket.
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  • shadowfang240shadowfang240 Member Posts: 33,270 Arc User
    ginger tea works too - just don't get ginger ale; most of the time it doesn't have any real ginger in it at all, and the amount of sugar in soda - especially AMERICAN soda - can make things worse​​
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  • coldnapalmcoldnapalm Member Posts: 7,629 Arc User
    ginger tea works too - just don't get ginger ale; most of the time it doesn't have any real ginger in it at all, and the amount of sugar in soda - especially AMERICAN soda - can make things worse​​

    True...but ginger beer can work wonders...especially the craft ones with low sugar.
  • starswordcstarswordc Member Posts: 10,809 Arc User
    I've got a ginger chicken recipe I can send you, too. It's a variation on beer-can chicken with a wet rub made with fresh ginger.
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  • ssbn655ssbn655 Member Posts: 1,889 Arc User
    starswordc wrote: »
    I've got a ginger chicken recipe I can send you, too. It's a variation on beer-can chicken with a wet rub made with fresh ginger.

    That would be great!
    Ginger beer by the way is off the table she hasn't touched a drop in well as long as I have known her.
    We have to watch her blood sugar levels and carb intake she is a type 2 diabetic. She got dealt a real bad hand.
    I really appreciate the good ideas they make this ordeal a little more bearable. Especially after dealing with idiots again today (Tuesday) on her health insurance deal. You and I know full well if it were their loved one they would get approved in a heartbeat.

    Freya
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