I’m new here & so scared!!!

Stephb5
Stephb5 Member Posts: 6 Member
in Kidney Cancer #1

My name is Stephanie, I am a 44 year old wife & mother of 3 AMAZING boys…men, they are 25, 22 & 19. I have been married to my husband for 25 years, January 2, 2025 we will celebrate 26 years of marriage!!! My husband Bob, 46 years old was diagnosed in May of 2021 with stage VI renal cell carcinoma. They immediately removed his sick kidney. After healing from the surgery, he then started immunotherapy which didn’t work for him. Shortly after stopping immunotherapy, his cancer went external to his neck. He had that removed & once healed he started a round of chemotherapy. After I believe 8 weeks of treatment he took a break. During that break, his cancer went to his brain. He did a treatment of gamma knife & the one treatment got rid of it. Shortly after this, his cancer went external again & popped up on his nose. Unfortunately, they couldn’t remove it, so he began a 3rd round of chemotherapy treatment. Praise the Lord, it cleared it up, but unfortunately like most treatments he was very sick. He decided to stop treatment early. We talked & he said he didn’t want to continue treatment. I supported his decision, this was in October of 2022. With all of this his one “healthy” kidney is now at stage 3 Kidney disease with about only 60% function. Since his decision to stop treatment, we have been monitoring him with regular PET scans. The couple of tumors he did have, have been stable until a couple of scans ago. His oncologist mentioned radiation. Just before he started radiation treatment he severely herniated a disc in his back which needed surgery. Surgery went great & he could feel an immediate improvement. Two weeks after surgery, he became very ill. I rushed him to the ER. They had to do an emergency surgery to clean out his back, it was severely infected, culture came back positive for MRSA. He was sent home on IV antibiotics for 6 weeks. Two weeks into his antibiotic, he began to get very sick again. Luckily the morning after the night he started running a very high fever, he had an appointment with the surgeon. We got to his appointment & they immediately admitted him back into the hospital to find out he now has double lung pneumonia. The antibiotics were failing him. They changed his antibiotics & after a week in the hospital, he was sent home on another 6 weeks of IV antibiotics. This is how we spent our summer. The day after getting out of the hospital from being diagnosed with pneumonia, my husband waked into his first of 15 radiation treatments. After he finished his radiation, he had another PET scan, this was middle November, unfortunately, his cancer is active & spreading. He said that he is tired of being sick & in pain, due to how sick he has been all summer. I respect him, his decision & support him 100%. Unfortunately, I hear so many moans & groans during the night, it breaks my heart, because he hurts & there is nothing I can do. This is so hard to go through financially & emotionally. The unknown is so scary!!!😢

Comments

  • Stephb5
    Stephb5 Member Posts: 6 Member
    #2
    https://csn.cancer.org/discussion/328748/i-m-new-here-so-scared

    I should have proofread before I posted, my husband has stage IV renal cell carcinoma.

  • stub1969
    stub1969 Member Posts: 987 Member
    #3

    I'm sorry you and your family are going through this, Steph. The toll cancer has on the patient is evident, but many times we forget about the caregiver and the toll this cancer journey has on them. You and your husband have agreed on a path to follow, which isn't going to be an easy path—especially with the pain and discomfort he will have. Has he been up front with his medical team? If not, I'd encourage him to have a conversation about this so they can support him with pain relief.

    We're here to support you through this—just reach out.

    Take care of yourself.

    Stub

  • Stephb5
    Stephb5 Member Posts: 6 Member
    #4
    https://csn.cancer.org/discussion/comment/1719423#Comment_1719423

    Thank you so much Stub!!! Yes, he has been up front with his oncologist, she is very understanding & hasn’t pressured his decision. I am a little worried, when we saw her in November for the results from his PET scan, she did offer him another chemo treatment, he declined. She never pressured him, but did say we’ll talk about it again depending how his scan looks in February. He has already let me know that he will politely decline again. It just breaks my heart, because he isn’t his normal perky self. I’m noticing he isn’t eating as much & tells me how tired he is. This isn’t easy at all!!!

  • Arx001
    Arx001 Member Posts: 30 Member
    #5

    You are very right to be afraid, anyone in your shoes would be too. You are a caregiver but you are facing extreme stress and responsibility on your shoulders and someone needs to take care of you too. One thing I may recommend is to locate a highly qualified psychiatrist for your husband (and perhaps also to support you) and a qualified financial advisor for you. These two can make a huge difference for your family. If that’s not possible please talk to people you know and trust for emotional support and financial advice.

    I believe more intensive pain management should help as stub1969 suggested before.

    This wouldn’t be any consolation but my aim as a stage 3 colorectal patient is to stay alive until my youngest child reaches 20. Your children are already at this age and to me that’s a major life accomplishment. My humble suggestion is to ease things, to take care of yourself emotionally and financially, to establish a better pain management regime. Act like he is on palliative care until February. If he is doing better emotionally by then you can talk about a new chemo.

    I hope I wasn’t intruding as I definitely didn’t mean to.

    Best wishes.

  • Bossmg2000
    Bossmg2000 Member Posts: 4 Member
    #6

    I always say that cancer just takes. Physically, emotionally, even spiritually at times. And it's all for no reason. You sound like a great wife who is supportive and loving. Good bless you.

  • Stephb5
    Stephb5 Member Posts: 6 Member
    #7
    https://csn.cancer.org/discussion/comment/1719448#Comment_1719448

    Thank you so much for all of your advice Arx001. There are just so many things you just don’t think about. Unfortunately, I don’t have much support, but I’m definitely relying on my AMAZING Lord & Savior, without him, I don’t know where I would be.

    I was the same way when my husband was first diagnosed. Our youngest was in 10th grade. He did get into some trouble shortly after my husbands diagnosis, which caused him to get expelled from school. I was a little upset with the school, but honestly wasn’t in the right frame of mind at the time to fight it. Not to give my son an excuse, but the school system didn’t handle things, I feel like they should. He isn’t a bad kid at all, I feel he was acting out due to what our family was just handed. Praise God, I was able to talk with someone I knew at the district office & he helped me get my son in a homeschool program. I just felt if he missed a year of school, that would put him a year behind & I honestly didn’t know what time looked like. Praise God, he got in with absolutely no issues. With that, he was able to graduate early & my husband was able to see him walk the stage. Honestly, it was the best decision we made.

    My husband definitely isn’t giving up, but I know his cancer is definitely progressing. It just breaks my heart, a man that was strong & could do anything, struggles with some of the simplest things.

    And, no intrusion at all, that’s what we are here for & I feel that’s why this forum is here. Doctors are only going to say so much & honestly. No one knows what cancer actually does unless you deal with it personally, not all doctors have dealt with it personally only the science behind the disease. I don’t feel I can give good advice to someone with cancer, but I can maybe help a caregiver. Sometimes hearing from others with cancer helps me understand what my husband is going through. He always tells me how he is feeling, but maybe what someone else says could help me understand him better. I know I can’t be prepared for this, but I like to know as much as I can so I can help keep him as comfortable as possible.

    I’m so sorry to hear about your journey. I will definitely be praying for you & your family.

  • Stephb5
    Stephb5 Member Posts: 6 Member
    #8
    https://csn.cancer.org/discussion/comment/1719616#Comment_1719616

    Thank you so much Bossmg2000, that really means a lot. I agree with you. Two of my boys got “F#@K CANCER”, not big on the language, but sometimes you just gotta get your point across & that’s EXACTLY how I feel about it.

    I glanced at your Bio, I want to let you know I will be praying for you and your family. I’m not sure what stage you are in or what all you have been through, but know I will be praying. Our oldest son has a tattoo that says, “Born to Fight, Hard to Kill”!!! 💪🏼 This is the motto in our family & I will be getting it tattooed on me too!!! STAY STRONG!!!

  • MarkFiore
    MarkFiore Member Posts: 2 *
    #9

    have you tried vitamin c therapy? I am praying for you and your husband.

  • Stephb5
    Stephb5 Member Posts: 6 Member
    #10
    https://csn.cancer.org/discussion/comment/1719886#Comment_1719886

    Hey there Mark!!! He does take Vitamin C everyday, honestly has been for years. We have tried different types of mushrooms, soursop, very high doses of CBD. I’m assuming Vitamin C therapy would be more than just a 500mg pill a day?

    We just got results today from an MRI he had on his knee. He has been having server pain. They initially thought it was tendinitis, found out he has a 3cm tumor at the base of his tibia where to meets his fibula. We’re waiting to hear back from the doctor to see what the next steps are.

    I did take a peak at your profile. I see that you also have renal cell. I am praying hard for you and your family as well. I know we have been through a lot, I know I still have lots of questions as well, but if there is anything you may have a question about, I’m here.

  • MarkFiore
    MarkFiore Member Posts: 2 *
    #11

    There is a special treatment that uses an infusion technique. This puts more vitam c into the body than you can get by eating its. I know of two people that claim they were cured of stage 4 cancer.

    Also I have a prayer that I used to help me and it worked to miraculously rid me of a very severe back pain problem.

    Link to a place that provides this therapy. Let me know if the prayer or the therapy work for you.

    https://utopiacancercenter.com/patient-stories/

    Prayer to Mother Mary for Healing and Protection

    O Blessed Mother Mary,
    You who are the Mother of Mercy and Health of the Sick,
    I come before you today with a heart full of trust and hope.
    I place myself under your loving care and protection.

    Mother of Compassion,
    You know the struggles I face and the pain I endure.
    Intercede for me before your Son, Jesus Christ,
    The Divine Healer, that He may grant me healing and strength.

    Wrap me in your mantle of peace and love,
    Shield me from fear and despair,
    And guide me with your gentle hand through this difficult time.

    O Mother Most Pure,
    Help me to embrace each day with faith,
    To find courage in your example,
    And to draw closer to God’s infinite love.

    Please ask for my healing, both body and soul,
    And bless all who care for me with wisdom and compassion.
    Through your intercession, may I find peace,
    And if it be God’s will, a cure from this illness.

    Amen.

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