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

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  • starswordcstarswordc Member Posts: 10,963 Arc User
    ssbn655 wrote: »
    Sept. 12th Update:
    Well good and bad news this time.
    Her insurance got approved so that helps a lot! Bad news they decided to only cover from August 1 on. Which means we are "only" 30 thousand in the hole.
    Good news she started chemo finally on Tuesday. Bad news her red cell count is really bad and it's going to get lower so may have to have trans fusions along with IV Iron to bump it up so she can continue Chemo. She is scheduled for a MRI to see if the cancer is still contained fingers crossed.
    Good news they have given her a med that boosts appetite bad news it's 300 dollars a bottle but good news her insurance is covering it 100%.
    Good news my son is flying in next week to visit. Bad news it's only for three days, I haven't seen him in two years so three days is to short!

    Freya and Denise

    I hate health insurance companies so much. You folks from countries with universal healthcare have no idea how good you have it.
    "Great War! / And I cannot take more! / Great tour! / I keep on marching on / I play the great score / There will be no encore / Great War! / The War to End All Wars"
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  • mustrumridcully0mustrumridcully0 Member Posts: 12,963 Arc User
    starswordc wrote: »
    ssbn655 wrote: »
    Sept. 12th Update:
    Well good and bad news this time.
    Her insurance got approved so that helps a lot! Bad news they decided to only cover from August 1 on. Which means we are "only" 30 thousand in the hole.
    Good news she started chemo finally on Tuesday. Bad news her red cell count is really bad and it's going to get lower so may have to have trans fusions along with IV Iron to bump it up so she can continue Chemo. She is scheduled for a MRI to see if the cancer is still contained fingers crossed.
    Good news they have given her a med that boosts appetite bad news it's 300 dollars a bottle but good news her insurance is covering it 100%.
    Good news my son is flying in next week to visit. Bad news it's only for three days, I haven't seen him in two years so three days is to short!

    Freya and Denise

    I hate health insurance companies so much. You folks from countries with universal healthcare have no idea how good you have it.

    I guess it depends on your definition of "idea". I get glimpses when I hear stories like that. Thinking that when you get seriously ill and you don't just have to worry about whether you'll make it or how your life will be altered by the disease, you also have to worry about suddenly being practically bankrupt... It sounds really scary. (And it's not like universal health care means you're finances will be trouble-free from now on.)
    Star Trek Online Advancement: You start with lowbie gear, you end with Lobi gear.
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    starswordc wrote: »
    ssbn655 wrote: »
    Sept. 12th Update:
    Well good and bad news this time.
    Her insurance got approved so that helps a lot! Bad news they decided to only cover from August 1 on. Which means we are "only" 30 thousand in the hole.
    Good news she started chemo finally on Tuesday. Bad news her red cell count is really bad and it's going to get lower so may have to have trans fusions along with IV Iron to bump it up so she can continue Chemo. She is scheduled for a MRI to see if the cancer is still contained fingers crossed.
    Good news they have given her a med that boosts appetite bad news it's 300 dollars a bottle but good news her insurance is covering it 100%.
    Good news my son is flying in next week to visit. Bad news it's only for three days, I haven't seen him in two years so three days is to short!

    Freya and Denise

    I hate health insurance companies so much. You folks from countries with universal healthcare have no idea how good you have it.

    I guess it depends on your definition of "idea". I get glimpses when I hear stories like that. Thinking that when you get seriously ill and you don't just have to worry about whether you'll make it or how your life will be altered by the disease, you also have to worry about suddenly being practically bankrupt... It sounds really scary. (And it's not like universal health care means you're finances will be trouble-free from now on.)

    It is scary considering we are both retired. So this expense is a very big deal. It is not only costing us finance wise but my own well being in that I will never be able to get my much needed GRS as those funds have already been spent on her expenses thanks to the unnecessary delay by the paper pusher approving her treatment. So I will forever be somewhere between male and female body wise. I will lay odds if it had been one of the paper pushers own family there would have been no delay.
    Denise my wife is not doing all that well and precious time was wasted by the idiots, time she cannot afford to be wasted. Rhabdomyosarcoma is a very rare cancer in adults and in adults is considered to be a very aggersive type so time is of the essence in treating it.
    Somehow we will get through this how right now I have no idea. But we will.
    Freya
  • oldravenman3025oldravenman3025 Member Posts: 1,892 Arc User
    starswordc wrote: »
    ssbn655 wrote: »
    Sept. 12th Update:
    Well good and bad news this time.
    Her insurance got approved so that helps a lot! Bad news they decided to only cover from August 1 on. Which means we are "only" 30 thousand in the hole.
    Good news she started chemo finally on Tuesday. Bad news her red cell count is really bad and it's going to get lower so may have to have trans fusions along with IV Iron to bump it up so she can continue Chemo. She is scheduled for a MRI to see if the cancer is still contained fingers crossed.
    Good news they have given her a med that boosts appetite bad news it's 300 dollars a bottle but good news her insurance is covering it 100%.
    Good news my son is flying in next week to visit. Bad news it's only for three days, I haven't seen him in two years so three days is to short!

    Freya and Denise

    I hate health insurance companies so much. You folks from countries with universal healthcare have no idea how good you have it.


    Good? Wrong. It would be far worse than it is now. Anybody who has had to fight the SSA, VA, Medicare, and Medicaid (all government programs) can attest to. Canada's healthcare system isn't all sunshine and rainbows like the shills claim it is. And don't get me started on the U.K.'s NHS.

    The biggest problem on the private end is the high cost of R&D and the need to companies to recoup that investment to stay afloat. Privatized healthcare entities ARE BUSINESSES after all, not social services or charities. They're in it to make money (nothing wrong with that). It's the profit motive that drives companies to push R&D projects, working with research hospitals and universities, generating real breakthroughs. Plus, the biggest boosts to helping the less fortunate has come from the much-hated "big pharma", who offer programs to allow qualifying patients to get high cost medication at reduced costs, or even for free, while cutting out the troublesome middleman (the insurance companies). That is something the government bureaucrats are either loathe to do, don't bother to do, or make it a pain in the TRIBBLE$ to do for people (bad for those who rely on others for transportation, having to make multiple trips a month to their local social services office to sort out paperwork/deal with constantly changing policies, regulations, laws, etc.)

    Government health systems only work in nations with smaller populations, have homogeneous populations, and have a national culture of healthier living. Which is not the United States of America, by the way. And I, for one, have no desire to see my healthcare in the hands of worthless, power tripping bureaucrats, mired by red tape and slow cogs of bureaucracy, overloaded with paperwork (just look at the amount of paperwork doctor's offices and hospitals have to deal with now. That's mostly thanks to the government and it's regulations), and/or politicians making costly promises to their clueless constituents for the votes, that amount to nothing more than more gibsmedats, while the rich scumbags who push socialized medicine for virtue points can fly off to foreign countries, with less government intrusion in healthcare, to get treatments that my glorious hypothetical, universal system has me on a six month waiting list to get (and still may have to pay for it). Some of those same tests and treatments are critical, lifesaving measures.

    Our system isn't perfect by any means (I have my beefs with the system). But we have the best research hospitals in the world, best medical schools, best R&D setup, best medical tech base, and we lead the world in trauma medicine. And it's available if I need it, and can pay for it. And if you do your homework and get informed, you can get high cost meds and treatments on the cheap or for free. Government has no incentive to maintain that, grow from that, or to push the research for new breakthroughs. If anything, they are a hinderence to the process and inject too much political BS into it than is healthy for a healthcare system.

    Rant off.On to the topic......



    ssbn, best wishes to you and your significant other. Keep your heads up and think positive. You have a chance and CAN beat this if you don't let it drag you down. Mindset and outlook play just as much a part in fighting disease and recovery as medication, doctors, and hospitals. And make the most of every moment. As a heart attack survivor, I've learned to look at life through a clearer and brighter lens, even during tough times. Because when you are down, there is no way to go but up.

    Keep the faith and stay strong, amigo.

    oldravenman3025.


  • wingedhussar#7584 wingedhussar Member Posts: 436 Community Moderator
    Okay, guys? Real-world politics isn't allowed.
    latest?cb=20171202101458

    ...THEN THE WINGED HUSSARS ARRIVED!
    Volunteer community moderator for the Star Trek Online forums. Not a Cryptic Studios or Perfect World employee.
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    Okay, guys? Real-world politics isn't allowed.

    Thank you. I didn't start this to have it turn into political discourse. I started it as a means y
    to vent and unburden myself for a bit and get a little bit of encouragement in this dark time,
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    So politics please keep them off this I don't need to read about a pissing contest between the various parties over health care.
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    Ok rant over and on to an update: Thursday the 12th. Denise went in for blood work and collapsed she fell out of the wheelchair. She was given IV fluids and pain meds and the blood work. She has a bacterial infection as the tumor has crimped her urethra off so she wasn't voiding all the way. Put on antibiotics.
    Monday the 16th our daughter took her in for a treatment of IV Iron to boost her red cell count. I was in my therapy session at this time. Chemo kills blood cells by the way. While they were accessing her portacath she started shaking from severe pain again. They ran a CT scan and the tumor has increased greatly in size this is more then likely from the delay in her chemo. So we live way out in NW Kansas. Major hospitals are at least a 3 to six hour drive away. Her Gyn/Oncologist was called , this is a different Md then the one who was in part behind the delay in chemo. Between us with Us being myself and my wonderful step daughter (we are joint dpoa so there is always someone available to make a call we are in agreement on everything so no discourse there.) and wife we agreed with the idea to airlift her to Witchita for surgery and massive chemo and radiation. So late Monday night she was airlifted there.
    Tuesday the 17th My daughter and I drove to Witchita. A five and a half hour drive. On the road we contacted her gyn/oncologist. And as of 1130 AM she had not scheduled surgery as the CT scan taken monday looked really bad as in you don't want to know bad. SO another scan was done and this one was clearer. Yes the tumor has tripled in size since July. Remember that Chemo delay? So here comes the gut wrencher. Three choices... Do nothing and let nature take it's course with hospice until she dies, Go the normal safer route of chemo, radiation then surgery and hope chemo/radiation will do the job before surgery. Low odds of success at this point. Choice three high risk high rewards route and by high risk we mean high risk. This type of cancer rhabdomyosarcoma is extremely rare in older people. It is usually like 99.97% in kids and teens. So in adults there are not many cases, This tumor is very fragile and tends to break up if disturbed more so in adults, So here is what going to happen or at least we hope.
    Today Wed. the 18th at 3:30 pm Central she is having surgery to remove everything. The plan is to do a full hysterectomy and not touch the tumor itself to minimize the chance of it breaking up and spreading cells everywhere, The tumor appears to be contained in her cervix and uterus. So in effect in a bag. She will then get an extremely brutal chemo treatment and extreme radiation to kill any cells that may have migrated during the surgery.
    This is more or less a Hail Mary pass and to be honest her best chance of surviving. The economic costs are extreme 75 grand for the airlift alone last night, 30 grand to date with other bills and more. BUT I don't care all I want is her to be her self again. I can't imagine my world without her in it in some part, If not my spouse (she has issues with my transition) then as my friend. Even if that isn't possible then to just be healthy and able to enjoy life again.
    I am a simple woman in her desires I don't care about wealth or material TRIBBLE. I just care about the people who touch my soul and desire them to be happy and well. Nothing more as that makes me happy.
    Love Freya
  • rndfluctuation#1470 rndfluctuation Member Posts: 813 Arc User
    edited September 2019
    I wish you both the best of luck! I wish for you and really hope it will work without spreading and will be over without complications. I wish for Denise to be healthy and painless again and for you to be happy family with that behind you in a good way.
  • captainwellscaptainwells Member Posts: 718 Arc User
    My condolences on a rather crummy situation. I'm a fifteen year cancer survivor, so I wish you both the very best. My original diagnosis was a two-stage cancer in my upper neck and chest area, likely due to an exposure many years earlier while working at a nuclear plant.

    Exiting from the reactor building one day I had set off the radiation detectors. Got a scrubdown or two under the shower head from a handful of radiation techs and ultimately had to have duct tape plastered across my torso to grab the minuscule hot particle putting out 21,000 disintegrations per minute, the bare minimum at that time for an upchanneled Nuclear Regulatory Commission report.

    My crew was removing a contaminated water pipe system and in all likelihood what made its way through double containment suits was a radioactive paint chip invisible to the naked eye. The duct tape did the trick and I passed the next detector scans, but ionizing radiation can zap you down the road and thus my own cancer experience twenty years later. Alas!

    I do feel fortunate that my cancer was detected early, treated exceptionally well and now gone the way of the dodo. Again, best of luck to you both!
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    My condolences on a rather crummy situation. I'm a fifteen year cancer survivor, so I wish you both the very best. My original diagnosis was a two-stage cancer in my upper neck and chest area, likely due to an exposure many years earlier while working at a nuclear plant.

    Exiting from the reactor building one day I had set off the radiation detectors. Got a scrubdown or two under the shower head from a handful of radiation techs and ultimately had to have duct tape plastered across my torso to grab the minuscule hot particle putting out 21,000 disintegrations per minute, the bare minimum at that time for an upchanneled Nuclear Regulatory Commission report.

    My crew was removing a contaminated water pipe system and in all likelihood what made its way through double containment suits was a radioactive paint chip invisible to the naked eye. The duct tape did the trick and I passed the next detector scans, but ionizing radiation can zap you down the road and thus my own cancer experience twenty years later. Alas!

    I do feel fortunate that my cancer was detected early, treated exceptionally well and now gone the way of the dodo. Again, best of luck to you both!

    Oh man I was a radiation worker myself back in the day. I was in engineering division on a nuke boat plus we carried/may have carried 160 warheads on 16 Poseidon SLBM's. So many sub saliors of my era have cancers and other aliments far and above the norm. I am glad you are hanging tough and continue to be free of it.
  • sthe91sthe91 Member Posts: 5,403 Arc User
    I will be praying for your wife's healing from uterine cancer.
    Where there is a Will, there is a Way.
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    UPDATE: Sept 19
    Yesterday she had her surgery. She pulled through like a trooper. BUT they were not able to remove the entire tumor. They got 95% the other five would have required very extensive radical surgery that she may not have tolerated given her low hemoglobin count and other factors. So the Hail Mary kind of worked. Now the other side of the coin. Her cancer Rhabdomyosarcoma is extremely rare in adults and it is a fast growing and aggressive type sadly. So rare no real statistics exist for cure rate in any given area it develops in adults. This cancer shows up all over the body. So they blanket five year survival is less then 40% and that depends on where it is. So the plan is control it with chemo and radiation. This may cure her or buy her a chunk of life with decent quality. This is actually a better result then we feared to be honest. She was very much her old self again today for the first time in a long time. So every day we have is a gift and will be cherished for ever.
    We do not know at this time when we can bring her home. We are staying near the hospital until Monday as my daughter and I have obligations we cannot change on Tuesday. My wife knows this and is ok with that if she has to stay beyond Monday. If she has to stay longer I will drive back Tuesday afternoon and spend the night in her room with her in a chair.
    Thank you again for all the positive thoughts Freya
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    Sept. 20
    Today we had a conversation with her MD. When she had first told us of Denise's results we were very tired. So today we got clarification. My beloved wife has a limited amount of time left. The chemo can only slow the cancer at this time. As long as the chemo holds it in check she will live but at some point the cancer as all cancers do will mutate to resist the Chemo that's when her life will be measured in weeks not months not years. I want to grow ancient with her bounce our great grand children on each others laps together and have many many more great adventures. I want her to be there to hold my hand when I wake every morning with that silly smile she has until we are old grey and senile. I want more life with her. This isn't going to happen now. I wish I could have posted better news but I can't. We have so much undone and unexplored left but time is running out on us. She wants to be able to go back to the beach we were married on in Ca. one last time, we have no idea if we can make that happen. This isn't fair I am not ready to lose my friend, lover, and wife. Live Long and Prosper Freya
  • starkaosstarkaos Member Posts: 11,556 Arc User
    I have mixed feelings about chemo. Chemo is indiscriminate in what cells it targets so that the cancer cells are killed in addition to healthy cells. There is the idea that nanoparticles could be used to deliver chemo to the cancer cells so that healthy cells aren't targeted, but I have no idea how long that will take to become available for medical treatment. Sometimes it is better to just not take chemo since it is a situation where sometimes the cure is worse than the disease.

    If I was in your situation, it would depend on the age of my spouse. If she is young, then support her fight with cancer as hard as I can. If she is old, then make her final months or years as comfortable as possible. It is certainly an excruciating circumstance where it makes sense why people hope for an afterlife.
  • redeyedravenredeyedraven Member Posts: 1,297 Arc User
    Not sure if a forum for a game is a good place to share intimately private struggles.

    That being said, I can relate. My aunt struggled for seven years, trying to live on and going through every treatment offered to her, including a few back-then-experimental therapies. In the end she was merely stalling the inevitable, and the time she gained was largely spent in hospital or suffering from chemo-side-effects at home.


    I hope that OP and his wife can at least get to enjoy a little more precious time together. Best wishes.
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    Not sure if a forum for a game is a good place to share intimately private struggles.

    That being said, I can relate. My aunt struggled for seven years, trying to live on and going through every treatment offered to her, including a few back-then-experimental therapies. In the end she was merely stalling the inevitable, and the time she gained was largely spent in hospital or suffering from chemo-side-effects at home.


    I hope that OP and his wife can at least get to enjoy a little more precious time together. Best wishes.

    This is one of the few places I can let things out with that being here and my therapist's office. My life is far more complicated then most and I don't really have the luxury of screaming out how I feel elsewhere. While at first glance it may not seem the right place it is actually.
    We are in a small way part of the Star Trek family with friends that are more family then friends who have worked on Star Trek in several of it's incarnations both series and films. My wife and I have been fans of Star Trek since the very first airing way back in 1966 we may not like some of the incarnations at least Trek is kept alive and hopefully the message sent way back when of hope and work towards a better brighter future still resonate for decades to come.
    I am so sorry your Aunt suffered for so long. Cancer is an evil monster it doesn't do anything but kill without mercy in the most agonizing fashion to both the patient and their family. I wish that Washington would spend as much if not more time and money on fighting this monster as they do with squabbling over who is in the white house.
    My wife was an RN for 33 years so she understands all that is to come. With Denise it's more a matter of letting her do some more of what she loves before the curtain closes. At any point if she wishes to let things take their course then that is her wish we will not demand to try everything in the book. She wants to wrap up a few things undone and unsaid before she bows and leaves this stage called life unafraid and undaunted. I can only hope I have as much courage as her when my time comes. I hope I can be half the woman she is for the rest of my life. Freya
  • rattler2rattler2 Member Posts: 57,969 Community Moderator
    No matter what happens, no matter what arguments may have broken out in the past in these forums...
    You got friends here.

    I've lost family to Cancer as well. Had an Aunt who fought it for many years. And at times appeared to be successful at it too.
    Not sure if a forum for a game is a good place to share intimately private struggles.

    Not a forum game. ssbn started originally because it was during an event and feared they wouldn't be able to finish beause RL was more important, and it evolved into updates on their wife with shows of support from the community.
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    I can't take it anymore! Could everyone just chill out for two seconds before something CRAZY happens again?!
    The nut who actually ground out many packs. The resident forum voice of reason (I HAZ FORUM REP! YAY!)
  • jonsillsjonsills Member Posts: 10,354 Arc User
    Virtual hugs for Denise and yourself, Freya. You guys do what's right for you - we'll be here for you.
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  • baddmoonrizinbaddmoonrizin Member Posts: 10,238 Community Moderator
    Sometimes, especially in times and events like these in a person's life, being there to support a fellow human being is more important than forum rules. The STO community and forum is here for you and your wife, @ssbn655
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  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    Sometimes, especially in times and events like these in a person's life, being there to support a fellow human being is more important than forum rules. The STO community and forum is here for you and your wife, @ssbn655

    Thank you baddmoonrizin. That means more then you can possibly imagine. In regards to her now terminal cancer (no idea how much life the chemo will buy her but it's a finite amount what they could not get is inoperable and the type she has is extremely rare in adults so rare there is not a lot of data and what there is is a shotgun pattern one case in this part another here and so on really random. It is a fast growing, fast mutating,and very aggressive cancer) and my own now vastly slowed down transition either one or the other is stressful enough on ones soul and family but both together is a nightmare, The timing is horrible I started my Doctor supervised journey only a month and a half before she became ill. Getting lots of heat over that by those who got the dates confused. There is no going back we both can only go forward and hope that it is possible for some kind of future together. Yes that is a pipe dream to be honest was looking forward to being to little old ladies on the porch sipping tea and watching the days roll by together with great grand kids running around. Now I hope she is well enough for a last trip to the ocean. She wants to go to the beach we were married at one last time but it's a 3 day drive one way. Our son is working on some kind of flight for that but it all depends on how she does. Myself I would be happy to ring in 2020 with her but I'll be happy with any time at all as it will be with her.
    I will be honest this wakes you up in the most brutal fashion as to what is truly important in life, For me it's just spending time with my best friend who happens to be my wife. Seventeen years together seems like a long time but it really isn't don't know if we will see eighteen but one can hope. She is hoping for two more good years to see our grand daughter graduate from KState and grand son from high school.
    Sorry for rambling I'm just an old tired woman at this point hoping for a one in a trillion miracle.
  • jamieblanchardjamieblanchard Member Posts: 556 Arc User
    Many hugs and well wishes for you and your family. And a glass of tea, any flavour you fancy. I wish I had more to contribute in addition to that.
    Resident TOS, G.I. Joe, Transformers and hair metal fangirl.

    And knowing is half the battle!

    21 'til I die!
  • ssbn655ssbn655 Member Posts: 1,894 Arc User
    Oct 13 2019 Update on my wife's condition. My wife has had some difficulty healing form the surgery on Sept. 19th that removed 95% of her tumors so much so Chemo and radiation was impossible for her to tolerate. Part of her incision still has not healed. She has steadily weakened and is in constant pain. She is on some real heavy anti nausea and pain medications. After lengthy talks she decided the best course of action for everyone was to be placed in a nursing facility where she has staff 24/7 this allows Denise my wife, our daughter and myself to get some much needed rest and for my daughter to go back to work.
    On Thursday after a lot of long talks my wife signed onto hospice. There is zero chance of a cure and she knows she has a fairly short time to live. She will reside in this nursing facility until the end sadly she will never grace our home again. On hospice she will no longer have to suffer through endless tests and scans and attempts to cure a terminal illness she will have her pain manged and her needs met. This also avails our family to grief counseling before and for two years after she passes. We have decorated her room with tons of art work we have collected over the years so it is home like. My daughter and I spend as much time there as we can. I sleep on the couch in the room every night with her except for the last three days as I have been ill with the flu. My days are spent with two hours at home in the AM taking care of household affairs and my therapy sessions for my transition and two hours in the afternoon. The rest of the time I am with my wife making our last memories together. I do not know how long she has left but she is fading fairly quickly. I think she may see Halloween but not much after that. Thank goodness I am on an antidepressant without it I couldn't function at all right now. LLAP Freya
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