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Thread: I am really screwed up after the third round

  1. #1
    Newbie New User
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    Aug 2011
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    I am really screwed up after the third round

    This is our third round with this disease (lymphoma).

    She is so weak from the chemo and radiation that i had to pick her up now
    She cant walk or talk or eat or do anything..
    The hospital made things worse..
    They gave her diarrhea and then when it all came out
    in the hospital every 15 minutes I had to to clean her (the nurses were too busy)..
    which i understand.. (diarrhea..)_

    So i picked her up by myself and did what needed to be done
    for 6 days straight with no sleep for most of the time

    What my wife doesn't know or understand is my back is so tore up already
    that i am going to a pain specialist myself and a chiropractor. But i have to do everything now.
    I have no help at all.
    I have to do the chores, I have to bathe her, then wash all the clothes, then she cant eat so i must watch her every minute.. (baby monitor i am getting)..
    She chokes due to nerve damage, Lymph node is on the nerve controlling the vocal chords..

    I am so tore up, i have to keep going, and i am doing my duty..
    No help due to my previous jobs income.. RATS..

    And on top of that she is in such pain and a bad mood (of course) gee i dont blame her, that she only has me to vent too - so i get it from both sides..

    Now i am unemployed too boot.
    ohh well at least i can pay for my bills for another month..

    Then we are done.. unless the Lord God does a miracle..

  2. #2
    Administrator Top User Didee's Avatar
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    Jun 2010
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    NSW Australia
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    Hello.
    I am so very sorry that your wife and you are facing such awful challenges.
    I have asked those with more power than me to move this to the lymphoma section.

    What country are you in?
    There may be some members who could make helpful suggestions.

    You have come to the right place to vent and find support.

    You MUST look after you too.
    Is there something you love that you can do for some relaxation and time out?
    Some music with headphones maybe when you feel it is ok to be "off duty" even for a short time. A hobby?

    I do hope someone will come along with some helpful suggestions for you.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Super Moderator Top User sheila's Avatar
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    Jul 2008
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    bethel park pa
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    jcilla- Im sorry your having such a tough time right now.-my question is if you werent on unemployment-who would be helping.?
    Thats the person that you need to ask so you can get a few hours of alone time.
    whos taking care of things when you go to your back appointments?
    Its very hard when the responsibility falls mainly on one person. Im fortunate to have my 2 brothers help out occasionally when moms in down mode.
    As far as bills? I think everyone is continuing to struggle with that your not alone. moms living on ss and shes starting to get hit up with $500.00 a month bills insurance wont cover. she has no clue what shes going to do either. and most of the family is in no position to help for long either. the worlds a mess
    we just have to take things one day at a time. Try not to overthink the future- just stresses one more.
    Maybe you will be able to get some assistence with food for the time being. you should look into that.
    In the meantime know your doing something wonderfull and your kindeness and concern are irreplaceable.
    were hear for you to vent some stress away. alot of us with several differnt types of cancer are on round 3,4,5,6, it truly is sad and stressfull. but the only way we can truly find anything positive about that- would be the fact that they are around to be doing this again.
    If we are tormented as caregivers imagine them being the ones that are battling.
    makes us ge it together and keep being supportive.Our lives wouldnt be any better if they gave up.
    hang out with us and we'll all cry vent moan and groan together.
    for some reason all the stress and worry together seems to make us feel stronger.
    its odd the way it works but at the end of the day..you go to that computer in private and know someone cares.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  4. #4
    Moderator Top User Gillette's Avatar
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    jcilla,
    My heart goes out to you both, I am so sorry this is continuing for your wife and yourself. I hear so much love in your words, I can imagine it is hard not to be testy- as you both watch what is happening- both to each, and because of each: and all from something completely beyond all your control. I am not sure of your area, but I would shake any tree that might help- even being ruled out due to income will change as time goes on- one month to the next. Churches, Family, The Salvation army? someone somewhere must be able to help you both somehow. I send my prayers and hugs, and wishes for peace. Come back, we are here, and do understand, and you can rest assured you are safe with us.
    Kathy: still hearing Ben's music, and feeling his love: but from the Heavens now

  5. #5
    Top User shakifan's Avatar
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    Feb 2011
    Location
    Phoenix, AZ
    Posts
    540
    I am so sorry to hear this. This disease takes a toll on the whole family. I know my husband and other caretakers have had it really difficult. And we are just on the first round of chemo. Hang in there-we are all here for you whenever you need to talk.
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11
    www.caringbridge.org/visit/jeannelawson1

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

 

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