Home > some setbacks

some setbacks

August 11th, 2018 at 02:48 am

We had some big setbacks this summer. My cancer medicine gave me a rare serious side effect called PRES syndrome. I went to the ER thinking I was having a stroke and had three seizures, then the doctors were convinced the cancer had spread to my brain. Good news; I survived. No cancer in brain, just the Syndrome. I was in the hospital for 8 days.

My first round medicince has stopped working. The tumors didn't grow gangbusters, but they grew enough. Now I go for immunotherapy infusions every 3 weeks. I've had one, and ended up in the hospital for 5 days with a Urinary Tract Infection. I felt like they would just not let me go, and they treatments they gave me there just kept me getting sicker.

The hospital is very good. They leave no stone unturned, but when you only went to the er because the nurse line wanted to be cautious and we feel otherwise fine, it's just too many stones.

For instance I had to have two blood transfusions because all the IV fluids they gave me were bringing down my blood numbers....Ugh.

Spending 13 days of july-aug. in the hospital really did change me. It freaked me out. I don't want to go back again. I don't want to spend the rests of my life going in and out of the hospital. It's not how I envisioned it. I thought I'd just be normal until hospice, then I would decline at home. That' how it went for my dad and grandpa and I hope I get the ease of the same.

21 Responses to “some setbacks”

  1. Laura Says:

    Nothing but prayers for your peace and comfort. X

  2. Creditcardfree Says:

    I wouldn't want all the hospital stays either! I'm sorry the medication did more damage. Praying for you!

  3. LuckyRobin Says:

    I'm sorry. I hope that you get the peace that you are seeking. (((HUGS)))

  4. Amber Says:

    Sending hugs and prayers for you.

  5. CB in the City Says:

    I am so sorry. I hope the hospital visits diminish. I hope you find peace!!!!

  6. mumof2 Says:

    Sorry that you and your family are going through this hell...I hope the hospital visits cease and that you and your family find some peace and serenity in whatever time you have left {{{hugs}}}

  7. Wink Says:

    Thank you for updating us. Sending peaceful thoughts.

  8. latestart Says:


  9. Jenn Says:

    The side effects and medical procedures sound terrible. I hope you're able to spend peaceful time at home with your family nourishing your body the best that you can.

    Prayers for you here as well.

  10. scfr Says:

    So very sorry to hear about the setbacks, Thrift-o-rama.
    Prayers for peace and strength are coming your way.

  11. MonkeyMama Says:

    I am so sorry to hear about your setbacks. Hang in there. (((HUGS)))

  12. Dido Says:

    It's good to hear from you but I am sorry to hear about the setbacks. Adding my prayers that you will be able to stay out of the hospital. ((Hugs))

  13. debtfreeme Says:

    I am sorry to hear about the medicine issues. Thoughts for your whole family.

  14. My English Castle Says:

    I echo Dido--it's good to hear from you. Thinking of you, your DH, and boys through this. Peace and prayers.

  15. Stephanie Says:

    You have crossed my mind if late. I continue to send warm thoughts and prayers up for you and yours. Thank you for the checking. You are an amazing woman, demonstrating such strength each day.

  16. starfishy Says:

    thanks for this update. i think of you often and send prayers for you and your family.

  17. snafu Says:

    Thrift o rama, I'm a cancer survivor and I'm horrified by your explaination. I suggest you start questioning the credentials of staff and asking them to verify product and treatment they are about to use [have them write the product name in your notebook, expiry & authorization] going forward. Something sounds very off to me. Sick people need to be pro-active and advocate for themselves!

    Were you told in advance the initial meds, common side effect was stroke and seizures? You are entitled to ask about the anticipated side effects of every drug/injection the medicos propose. I feel like I'm on some kind of silly carousel at every hospitalization. They are charging thousands of dollars to make me sicker! I often feel they haven't a clue, never listened to the drug producer 'detail man' when he explained the possibilities. The words I listened to 'we'll try this, it should have a better outcome.' That's my clue to ask questions. Start asking questions about IVs, tell them about negative outcomes in the past! Doctors don't have all the answers but they've sworn Not to do Harm.

  18. rob62521 Says:

    Thinking and praying for you.

  19. FrugalTexan75 Says:

    Many prayers.

  20. Rachael777 Says:

    Sending hugs and support. Your strength amazes me. Keep it up and live every moment yuo have with joy.

  21. Thrifty Ray Says:

    Thinking of you friend. XO

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