Perhaps We Can Help Each Other

I was diagnosed with B-Cell lymphoma stage 4, on June 1st, 2015. I had IV chemo, over 40 blood transfusions, dozens of Neupogen shots, blood clots, pneumonia, and had allergic reactions to blood (I needed to get irradiated blood). Plus, I had reactions to several antibiotics. I was hospitalized about nine times, totaling about 90 days.

I lost my independence, and everything I owned I gave away, donated or trashed because I believed I was going to die. I lived with my son for 9 months, but then after 14 months of treatment and suffering, I was in full remission, WOW! It only lasted 10 months. Now, I am terminal. My cancer returned with a vengeance. But, I am still here, and I am still fighting. My oncologist has me on daily Imbruvica 420mg, every day, He said he cannot fix this, but the Imbruvica will prolong my life.

Well, now three and a half years since my first diagnosed, I am still here, living on my own again (still) and still hopeful. It is very hard though, I am afraid to go out without wearing a mask (germs scar me) with my weakened immune system. Plus, I am in pain all the time. My spleen feels like it will explode at any time. My oncologist originally recommended I have it removed, but I got 2 more recommendations (opinions) and they both said “NO”. I did not have it removed. I also went through radiation therapy on my spleen and it did reduce in size a lot and is now only a bit enlarged.

I’m still here

My depression is now overwhelming. I do take opioids for my pain, but with all the bad press, I feel like a criminal when I refill a prescription. I am afraid to tell people for fear of what they will think. Plus, I cannot take antidepressants because of the opioids. I know that this cancer is going to kill me eventually, although I pray for many more years, even if it is with pain. I guess that what I am really looking for here is someone else with a similar condition and experiences. Perhaps we can help each other?

My pain doctor asked me what I was doing. He thought I would have died by now. My oncologist said, “it is Gods Will that I am still alive”. I depend on diet and exercise (even when it hurts), plus my faith in God, of course. It was a blood cancer employee, that responded to my comments on Facebook, that brought me here! I hope to find some mental healing here.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • hammosa
    1 month ago

    I am finally reading your story, Wow. 10 months remission? I am ashamed to say I declined chemo and BMT because I was afraid of going through hell for possibly not having a durable remission. You are definitely courageous!
    I am 5 years since diagnosis and just did radiation bc I had a tumor wrapped around the aorta of my heart and my trachea. I was definitely going to die and thankfully my tumors also responded to radiation.
    My idea and goal was to try to keep my immune system up as much as I could and just radiation whatever is screaming the loudest. The doctors are just kind of watching in shock bc they have not had a patient refuse chemo and dictate their care.
    It was important to be home as much as I could with my daughter. I don’t have control over having this disease but it doesn’t dictate how I am going to treat it either.
    As far as opioids go, I’ve gotten over the guilt of taking them. There is no reason why someone with terminal cancer should have to suffer. Hospice encourages me to medicate because I am more active when my pain is well controlled and this keeps my spirits up. My quality of life is much better.
    I am able to take my antidepressant while taking my opioids. I take Fentanyl patch and dilaudid for breakthrough pain. My Hospice nurse says I take a lot less that most of his patients. Let it be of an encouragement my friend that you have choices, and one is the right to be as comfortable as you can be given your situation. No one has a right to judge you. God bless you!

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    Hi @bluchs , So happy you found your way to this site. You have gone through so much, and I know so many can relate. The journeys are so different but very much the same. The one thing I can tell you “don’t give up! Use your faith to get you to the finish line of another go at remission. I know it can be daunting not knowing what tomorrow holds, but live in the moment and keep at it in fighting. Blessings!

  • hammosa
    1 month ago

    Hi there, you are not alone. I am stage 4 mantle cell lymphoma. Although I chose to not do chemo, I did palitive radiation to my chest in order to have more time. I was first diagnosed in oct 2013. I just did radiation this past September and it shrunk my tumors back considerably.
    I am like you, I am on opioids too. I have pain that is managed pretty well with a Fentanyl patch using dilaudid for breakthrough pain. I do not feel bad about it anymore bc I have a disease that warrants taking pain meds. One of the best things I did was get signed up with hospice! They have really helped me walk through this disease.
    My heart goes out to you and I hope that I can be a source of comfort to you and you to me. I woke up today feeling grateful for another day. Not all days are good but I do have some. I make the best of good days. Just sitting in the sun for 20 minutes a day does wonders for my soul. My heating pad has also been a source of comfort. Hang in there my friend, you are not alone💕

  • bluchs author
    1 month ago

    Hammosa
    Thank You for Your kind words.
    I actually teared up a bit when I read your response!
    I was on the fentanyl patch, when first diagnosed, but it actually gave me nightmares and made me itch, so I stopped using it.
    Now I use 4-4mg dilaudid per day, and I was also using 3-15mg morphine per day, but I am trying to reduce my morphine, so now for 30 days, I am doing only 2-15mg morphine per day, then I will do only 1-15mg morphine per day.
    I will not give up my dilaudid though, and I pray that I am able to function better, without the morphine?
    I just don’t know??
    Hospice actually has approached me twice, the last time, I almost signed up.
    But My son talked me into continuing the fight?
    So I have now been on a daily dose of Imburvica-420mg per day for the past 17&1/2 months?
    I am still here, Wow!
    I also changed my diet, drastically.
    I bought a book ” The Cancer Fighting Diet”
    You can see what it is here under the forum section.
    I agree, not all days are good, in fact, lately most are not, I now spend about 13 hours per day in bed!
    I Thank God every day I wake up and know, I have at least one more day.
    Your response here, Is In Fact a Comfort to Me, Thank You, God Bless You.
    I will be Praying for You.
    I know now, that I am not alone, I have found great comfort here at Bloodcancer.com.
    My son was here yesterday, He said that he and his wife want to build a pole barn with a father-in-law apartment in it, and they want to buy me a camper to live in, until it is done, they have 6 acres of land with a pond and woods, my apartment will face the pond.
    I am very excited, but I told him I have to think about it a bit?
    I don’t want them to spend a lot of money on me, then die on them??
    I want to say yes, But I love them so much, I don’t want to burden them??
    Like you, I Pray for many more years of life.
    But I am also a realist, and I don’t know what the future hold for me?
    My heart also , now goes out to You.
    I hope you are able to enjoy, many more good days to come, in fact many more years to come.
    Prove hospice wrong and live on.
    Help others, as You have now helped me.
    May God Bless You, Stay Strong and Fight On.

  • hammosa
    1 month ago

    Bfuchs, so glad to read your heartfelt post. Hospice does not just provide end of life care , they provide care for me even when I was getting radiation out patient. I have had MCL for 5 years and my life expectancy was 3-5. Because prognosis was so poor for my cancer, I opted to not treat until I became symtomatic. I was
    Offered chemo but refused as remission would be short lived. I have used Hospice for all my needs over the last year. All my Meds are free as well as weekly Nurse visits, counseling and Dr visits. I never have to leave my home for anything unless it’s a visit to my oncologist or radiation therapist. I am free to go places like the store or church, I am very functional. There are a lot of misconceptions about hospice but honestly they have a better job of managing my pain.
    I think it is wonderful that your children love you so much that they want to move you close to them. I think it is important to let them do things for us even when we don’t want to burden them. Being involved in your care is a gift to them. Thank you so much for reaching out to me. It wonderful to talk to someone who understands. God bless you and keep you💕

  • Pamela Kline moderator
    3 months ago

    @bluchs – You have been through so much. You are absolutely not alone in feeling depressed. Many in our community have also talked about the challenges of receiving pain medication, as well as the importance of faith and staying active. I’m so glad that you’ve found our community and that we can support each other on the good days, the bad days, and all the days in between.
    – Pam (Team Member)

  • Poll