Spreading Hope as a Mesothelioma Caregiver

Janet Graeff & Daughter

by Janet Graeff

As of March 14, 2016, my daughter is 10 years NED, no evidence of disease. She is a peritoneal mesothelioma survivor. I was her primary caregiver during her recovery from surgery and chemotherapy. The chemo, for her, was extremely difficult. We nearly lost her to a weird reaction to the second infusion. But, the dosage was tweaked and she endured all 6 infusions. Caregiving was intense.

As we went through her follow-up with the team of doctors her surgeon had recently left, we realized the care wasn’t working. Neither of us could develop a relationship with the doctor. It was obvious he was uncomfortable with her history. He admitted to never knowing anyone who had survived mesothelioma or experienced the surgery she’d had.

While she was in treatment, we stayed away from online research. It was depressing, scary, and we couldn’t separate truth from fiction. Curiosity drove me to do some searching once her treatment was over, and that’s how I found the Mesothelioma Applied Research Foundation. I read through their website and contacted them.

I became a member of what were then sort of chat rooms. At first I just read. Then I began to comment on posts and ask questions. When I knew that it was the right place to be, I got my daughter’s ok to contact Mary Hesdorffer. After explaining our situation, she connected my daughter with a specialist that fit her needs, and he took over her follow-up care.

During all this she regained enough physical strength to return to her own home. I did some therapy to help myself transition from caregiver back to just Mom. I also was getting to know patients and caregivers more through the Meso Foundation’s online support groups. In spite of the joy for her survival and the therapy to regain focus on my own life, I was angry. Angry that this horrible, preventable thing happened to her. Angry that the carelessness of asbestos use had nearly cost me my youngest child. Add frustration to that anger when I began to learn just how many patients, and how many doctors, had no idea there was even treatment available for mesothelioma!

I had developed an online friendship with a patient and advocate named June. She was a nurse who had pleural mesothelioma. We began to share private e-mails. June told me I needed to channel my anger into hope for others. She said I needed to share my daughter’s survival with other patients so they’d have that hope to hold on to. Mary also encouraged me to get more involved. I began to really join in the online discussions. I discovered it was the right fit for me. I channeled my anger into trying to share hope for all those patients and caregivers. Ten years later I’m still trying to share and support.

The Meso Foundation’s online presence has gone through huge changes. The community seems huge now and it is international. Through the Foundation I know and feel real friendship with people around the world.

I attended two of the Meso Foundation’s International Symposia on Malignant Mesothelioma in Washington D.C. with my daughter. Attending this event is an amazing experience! I was able to meet and listen to mesothelioma experts, and the best part was seeing and meeting the friends I had made in the meso community online.

The medical advances in mesothelioma treatment and research towards finding a cure astound me! I’ve done, and still do, some advocacy. I’m most comfortable with patient and mainly caregiver communication and support.

The mesothelioma community is now an extended other family for me. I need them. While we rejoice in my daughter’s survival, an ugly truth remains. There is no cure. That ugly, deadly thing known as mesothelioma could return. It could still steal my baby. I try to temper the hope I offer with that reality. If it ever returns, I will need the Meso Foundation and my meso family more than they have ever needed me.

2 Comments on "Spreading Hope as a Mesothelioma Caregiver"

  1. Thanks for sharing your thoughts and story. My 25 year old daughter has just had her one year NED results for her peritoneal mesothelioma. She had surgery and HIPEC last April. It’s encouraging to see a mother/daughter team ten years out. I have hope that Olivia will have a long life. Her pathology is super rare – well differentiated papillary mesothelioma. It seems that it’s not caused by asbestos, but is organic to the person. It’s not an aggressive form of meso, thank God. It’s so sad to me to see these beautiful young women who suffer through the horrific treatment and fear of this cancer. My heart goes out to you.

  2. Carmen Honig.july 36th, 2017.

    I do understand your situation.

    My husband,Erhard had Ephitiliod Malignum Mesothilioma for many years and we knew nothing about it. For some reason it did not manifest it’s symptoms and unfortunately we lost him in 2013.

    I know it might sound strange to you, but in a way,you are lucky that you court your daughter’s condition in time.

    I was a care giver to him for years, and I had the blessing to handle it correctly ,with the amazing support of a brilliant doctor in Sandton, Johannesburg,South Africa ,who studied here in USA ,London and Pretoria South Africa,who graduated Cum Laude. Although he graduated as a physician he concentrated in assisting Mesothilioma’s patients.i wS blessed to count with his assistance costing always with him about the care,I should give him at home,specially the most important aspect for his condition which are their right type of anti inflamatories ingredients for his meals,fruits,vegetables,etc. along with special juice that with all my love and desperation I created for him and managed to let him go without the phisycal pain he supposed to have passed through…I decided as well ,since he was formally diagnosed ,not to let him fall into depression and he did not.with all these activities, we managed to give h right and a half more months to live with almost no pain,dignity and with the best medicine : positivism and making him laugh ad much as we could..

    I am just trying to tell you that the emotional aspect of this condition is primordial. You must keep on giving the love you do give, mixed with the the correct psycology in dealing with the patient. In doing so and seeing the amazing results, you as well will enter into a new kind of life style ,a new way to see life that will feel you with so much happiness and will full filled your heart with longing to help others as well, it is called, Compassion..

    Ignore doctors that do not care enough, keep on searching for the right one, the one that is inquisitive enough to find the way ,not just to help and handle patients with mesothilioma, but with the necessary passion to make their lives worth living,weather they are early detected or terminal patients.

    Wonderful that you are conections with people in your situation. I am trying here in Miami, Florida. I want to help, I know how care givers pass through as well and the loves ones of a mesothilioma patient.

    Sincerely,
    Carmen Honig..

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