civilwarlady's Journey with Endometrial (Uterine) Cancer

Patient: Endometrial (Uterine) Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 8 years ago, Female, Age: 54

  1. 1
    about 5 years ago
    civilwarlady's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I continued to work while I was getting chemotherapy in 2009. I was very tired and weak. The diarrhea and nausea became overwhelming at times and impacted my life to where I had to call off work on occasion. I still have chemo brain from the treatment and it has been 3 years. It is getting better but it is frustrating.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  2. 2
    about 5 years ago
    civilwarlady's Avatar

    Radiation

    I had 25 external radiation treatments and 5 internal radiation treatments in 2009. The treatments were quick and painless. The side effects impacted me horribly. I became incontinent of bowel and bladder and had to begin wearing depends all the time. The side effects never went away. I developed radiation induced colitis. In December 2011 I had to get a colostomy because I developed a rectovaginal fistula.

    Painless Experience: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    about 5 years ago
    civilwarlady's Avatar

    Chemo brain

    Side Effects

    Where do we go with side effects? I was very anemic when getting radiation and chemo. I developed chronic diarrhea that worsened instead of improved after I completed treatment. Next came radiation induced colitis that worsened to the point I developed a rectovaginal fistula and needed a colostomy in december 2011. In 2009, they were unable to remove the tumor because it is sitting on a major blood vessel and a nerve so I could have bled to death or been paralyzed. I split my abdominal wound wide open and spent 6 months on a wound vac. I became so sick in 2009 they put me on IV TPN at home. I lost 80 pounds and was completely bed bound. While this was going on I developed lymphedema in my legs. After the colostomy things have improved and I am relearning to walk. I still have to wear adult diapers because I have incontinence of bladder too. I still have chemo brain which is very frustrating. My problem solving skills went out the window. Some days I still can't clearly think. I can no longer practice as a nurse. I also have major self image issues from all the changes in my life.

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  4. 4
    about 5 years ago
    civilwarlady's Avatar

    Job

    Loss

    I have had many losses. The first was my ability to practice as a nurse. When they could not remove the tumor I had to deal with fear that the cancer would return. When I split the wound open and ended up on a wound vac, unable to eat, get out of bed and had diarrhea up to 30 times a day, I faced the possibility I could die. I took an antibiotic that caused my liver to temporarily shut down and I turned yellow. The lymphedema from the tumor location and the malnutrition caused my legs to look like crusty watermelons and I lost my ability and stamina to walk, landing me in a wheelchair. I spent every holiday in the hospital it seemed in 2009 and part of 2010. I had to give up wearing the corset and hoops appropriate to my civil war re-enacting hobby. I slowly loast every sense of self I ever had. If it weren't for my husband caring for me I would have chucked it all. I battled back as my nutrition improved but the radiation induced colitis finally had its way and I developed a rectovaginal fistula requiring me to get a colostomy. to me that was the final blow. I need to find who I am again.

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  5. 5
    about 5 years ago
    civilwarlady's Avatar

    Wrote a book and figured out how to get back to re-enacting

    Celebration

    Miracle of miracles, the tumor has not grown or moved since i ended active treatment in 2009. I was able to get back to re-enacting on a limited basis wearing reproduction period wrappers (no corset or hoops) and used my 20 years of research in civil war history to write and self publish an historical fiction novel in 2011. Once I got the colostomy in december 2012, my spunk has started to come back. I now have interest and desire to learn again. I am relearning to walk with a walker and rely on the chair less and less. I have even been able to travel to Virginia Beach for a brief time away. If my next scan remains unchanged they tell me I will be in remission. That will be cause for celebration. I do need to work on re-defining and loving the new me.

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  6. 6
    about 5 years ago
    civilwarlady's Avatar

    Renal Scan with lasix washout

    Procedure or Surgery

    Had a renal scan with lasix washout on tuesday april 24. This is the second time for me to have this test, the first time was in October of 2010 when my kidneys swelled for the first time. We thought they had returned to normal size but the left one decided to swell again. Consulting with my wonderful urologist, we decided that a renal scan to look at function would be best before deciding if I need a stent in my ureter. They tell me the swelling is caused from all the radiation and the attempted hysterectomy. I can live with that, as long as the tumor (he is supposed to be dead, just sitting there) behaves. If I need the stent, then it will need changed every 3-4 months so we are hoping that I don't need it done. Sometimes it gets frustrating when the complications develope complications. I am just glad that I tolerated the scan and I didnt spend too much of my life in the bathroom!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  7. 7
    about 5 years ago
    civilwarlady's Avatar

    Anniversary

    Celebration

    April 28, 2012 my husband Michael and I celebrated our 5th wedding anniversary at the same spot where we were married, a civil war re-enactment. It was a great way to celebrate our life and love together. God has blessed me with this wonderful caring man.

    1 Comment
  8. 8
    about 5 years ago
    civilwarlady's Avatar

    Decision Point

    Got a call today on my Renal Scan. My left kidney is only functioning at 20% and my right kidney is 80%. I have to have a uretal stent placed. Its an optional procedure but I want to live my life and be as healthy as possible so it was a no brainer. Just another bump in the road.

    1 Comment
  9. 9
    almost 5 years ago
    civilwarlady's Avatar

    Removal and replacement of Uretal Stent

    Procedure or Surgery

    Had my uretal stent replaced on August 14 with minimal impact to life other than the usual post-op dehydration and some bleeding. Have to be very careful not to do too much lifting or moving until the bleeding eases. The stenting is helping the hydronephrosis. The left kidney has gone down in size. I am very blessed to have doctors who allow me to actively engage and participate in my care.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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