thanks

amyjoe23
amyjoe23 Member Posts: 14 Member
in Kidney Cancer #1

About a year ago, I made my first post, and lots of you answered questions for me. My husband had been diagnosed with kidney cancer, with a 13 cm tumor around his left kidney, and several nodules on his lungs. We tried so hard to get a doctor in St. Louis at Barnes-Jewish Hospital. We heard they did miraculous things for cancer patients. Unfortunately, they initially booked us with the wrong doctor. We were new to the cancer game, so we didn't realize that kidney cancer didn't need a radiation oncologist for the actual kidney tumor. After waiting a month for that appointment, the booked us immediately the same day with a urologist. He was going to remove it, but the tumor was impacting Oscar's colon, and they were going to have to remove his spleen, and part of his liver as well. They literally booked us for surgery for 3 weeks later, but by the time we got up there, it had spread to his bones. Instead of an open nephrectomy he ended up with spinal surgery to remove a lesion on his L3 and L4 vertebrae. And his hip was in risk of fracture.

We went home with a walker, and an appointment with a medical oncologist, and a radiation oncologist for the spine. By the time he saw his medical oncologist, we were 4 months past his diagnosis, he had to wait until he quit radiation to start his drug therapy. They started him on Votrient in middle of August. 

His medical oncologist thought if we could find someone to remove the kidney tumor, we might have a better chance of him not dying so quickly. But as most of you know I'm sure, kidney cancer is cruel. WE saw a 2nd urologist, but he stated that Oscar would have to a gain wait (he had lost about 110 pounds by that time), and we would have to get rid of all the cancer in his bones. We still thought we could do it.

We saw a orthopedic surgeon. While waiting to have the embolization done, and then the surgery, we carried on.

He had lost so much weight. He couldn't eat anything. I could get him to drink a couple of Boost a day (he hated Ensure). He threw up everything. Eventually his radiation oncologist (on his followup appt) booked him to have a g tube placed in his stomach. That was done on a Friday. The following Tuesday, October 11, we went to the hospital to have his hip tumor embolized. His O2 levels were down in the 60's. They wouldn't do the surgery, we ended up in the ER where they did a CT scan on his lungs. He spent the night in the hospital, and the next morning, we learned that his lungs had not several nodules on his lungs, but hundreds. His lungs were also filled up with fluid. His doctor told us that if we went home, it would be on hospice. I talked him to staying for a bit to see if we could get rid of the fluid, and continue to fight the cancer, but after his morning pills, he went into a coma, and almost died. 

Our kids were 5, 7, 12, and 18 at that time. Telling them that day (we had avoided it until the end, I thought it would be easier on them, and continue to think so) that their father was going to die was the hardest thing that I have ever done. He did come out of his coma that day(miraculously the doctor said), and we went home on hospice the following day. He was so confused. That was a very hard weekend for all of us. He didn't like being on oxygen, and he was so confused about everything. He thought that I was trying to hurt him with hospice. I would do a nervous hysterical laugh (it was either that or cry) and he would get so mad at me. 

On Monday October 17, 2017, he deteriorated that morning rather quickly. I had asked for the hospice people to come in the afternoon, as he would rest better in the morning time. But I had to rush them in. They told me that Oscar was in the active dying phase, but that they couldn't know for when sure, but they thought it would be a while. Alas they were wrong. He passed away at 5:07 in the evening, holding my hand. 

Our cancer story was fast, and quick. I thought he stood a chance, and in hind sight, I wish we had did some things differently. I'm not supposed to play the what if game, so I won't. I researched renal cell carcinoma until I was blue in the face. The doctors told me that it was just too far advanced when he was diagnosed. 

I wanted to thank everyone for answering my questions in the beginning. 

Sorry this was so long, once I started I couldn't stop. I had a good cry at the end too. 

I wish everyone the very best on your fight with cancer.

Comments

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    #2
    Hi AmyJoe

    Thank you for telling your story.

    Steve.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #3
    So sorry

    I hate this disease. I hope that posts like this remind people that modern medicine still has it's limits. Thank you for taking time to inform us. I hope you and your family can overcome this and do well as your husband would have wanted.

  • APny
    APny Member Posts: 1,995 Member
    edited April 2017 #4
    I'm so sorry, Amyjoe. Thank

    I'm so sorry, Amyjoe. Thank you for sharing your story. Yes, it's sobering to realize that our doctors are not exactly the gods we think (or hope) that they are. My condolences to you and your family.

  • Wife of kidney cancer fighter
    Wife of kidney cancer fighter Member Posts: 41
    #5
    I am so sorry! thank you for

    I am so sorry! thank you for sharing your journey with us and I hope you can heal! Sending you lots of love and hugs!

  • Allochka
    Allochka Member Posts: 1,072 Member
    edited April 2017 #6
    Dear Amyjoe, I am so sorry...

    Dear Amyjoe, I am so sorry... Your story had moved me so much, because I am acwife of kidney cancer patient too. I hope you will overcome this terrible loss and be happy again. You have kids to live for.

    Alla

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #7
    Amyjoe, I am so sorry for

    Amyjoe, I am so sorry for what you have been through. Thank you for sharing. This is a terrible disease. Hoping your happy memories help you through your difficult times.

    Big hugs

    Jojo

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #8
    {{{{ HUGS AMYJOE  }}}}

    {{{{ HUGS AMYJOE  }}}}

    How brave of you to come here and share you most difficult moments. How lucky is Oscar to have chosen YOU as his life partner! My heart breaks for you all, but I extend myself to you privately if you ever need to process anything or just vent. I am here for YOU!

    RIP Oscar, you fought the most challenging battle of your life. Your legacy continues...

    Healing hugs, Jan

  • hardo718
    hardo718 Member Posts: 853 Member
    #9
    God bless you Amyjoe

    Thank you for sharing that heartbreaking story.  Life is precious and although Oscar was taken from his family too soon, I'm sure he's watching over all of you.  I truly hope that your memories of happy times together help in someway to carry you & those kids thru these dark days.

    I'll be praying for you all,

    Donna~

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #10
    Oh Amyjoe

    I am so sorry what you and our family have been through. Thank you for the courage you have shown in sharing this story. I hate cancer, but I hope and pray that all of the thing you have learned and will keep learning will be a blessing to others. Sharing your story has already blessed us. Thank you.

  • Abunai
    Abunai Member Posts: 173 Member
    #11
    AmyJoe

    Your story is very moving.

    It must have been very difficult to write, but I'm glad you did. I read it out loud to my wife, who is by my side, battling this loathsome disease.

    You and your family are in our prayers.

  • Sslee723
    Sslee723 Member Posts: 54
    #12
    Amyjoe

    Im so sorry for your loss.  Your story really touched me and hit home hard.  I am battling this vicious disease and everyday I'm afraid to look around a corner just waiting for who knows what.  But I have a spouse just like you that is always there .  You and your family are in my prayers .

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