ABOUT ME

 

 

In March of 2000, my 37 year old husband Alan was diagnosed with renal cell carcinoma.  We had his kidney removed and other than 3-4 follow up appointments and scans a year, that was it.  It was relatively simple.  We had such a beautiful life with three phenomenal, healthy, thriving children.  Life was perfect!

 

Then we came to the summer of 2009 and everything changed.  I can not remember how long Alan had this large lump on his right arm, but I think it was there ever since I had known him (15 years).  Many doctors, including his oncologist, looked at his arm and said, “Do nothing.  It’s a simple lipoma and unless it is changing, just leave it. It will require major surgery to remove and it’s not worth going through that for something that is nothing.”  How wrong all these medical professionals were.

 

In the summer of 2009, Alan decided for no apparent reason that it was time to get this lipoma removed.  And that is when our world changed. Hello pleomorphic rhabdomysarcoma, good bye happiness.  Nothing was as it appeared to be.  And it got worse and worse from there.  It was pure luck and an incredible support system that helped my husband and I better navigate this terrifying cancer journey.

 

As if fighting cancer wasn’t hard enough, we had to find treatment alternatives- both medical and non-medical; travel assistance to get from Houston to DC after Alan had brain surgery; trying to find what we felt was good, sound nutrition information; how to appeal insurance decisions; negotiating payments to doctors; etc.  This took tremendous time and energy that was desperately needed to fight the cancer and raise a family.

 

Fast forward to today….  Alan passed away on July 12, 2010.  So now, I am a 43-year old widow (ugh…I hate that word) raising our 3 amazing kids. Alan & I spent many hours talking about the wonderful things we were going to do after he overcame his cancer. It never occurred to me that the cancer would be the victor.

 

I’ve learned a lot along the way about cancer, about people, about life. I’ve learned about things I never even knew existed. When I ask myself what can I do with the lemons that have been thrown my way, I know what Alan would say. He’d say, “Make Lemonade.”

 

There are a ton of amazing resources available to help people fight cancer.  I hope to make it easier for others on this journey by making it easier to find what’s out there.  That’s what CancerHAWK is all about.  CancerHAWK is my lemonade.

 

By the way, today is the 16th year anniversary of mine and Alan’s first date.  We always celebrated this day.  It was the day that changed me for the rest of my life… for the better of course!!!  So it seems only apropos that today is the day I officially launch CancerHAWK.  I love you Alan, always and forever!

 

Got questions?  Please email me at Robyn@cancerhawk.com.  xoxo

p.s.  Only a year and a half after starting this site, Bethesda Magazine wrote an article about me & Cancerhawk… Winged Victory – Bethesda Magazine – November-December 2012 – Bethesda, MD- check it out! I’m so honored!

41 comments

  1. Hello,

    Very sorry to hear of your husband’s cancer battle. Such a terrible disease.

    I work with the Mesothelioma Cancer Center and was hoping you might link to our website. If you look over our site we have a wealth of HON-code certified information and work hard to provide a beautiful site for our visitors. We also work closely with Carl Jewett and the Veteran’s Assistance Network.

    The Link I aim to get is titled ‘Mesothelioma Doctors’ to our doctors page at asbestos.com/treatment/doctors/

    I wish you all the best. Let me know if you have any questions. Any help spreading awareness of Mesothelioma and Asbestos is greatly appreciated!

    Best Regards,
    Nicholas Hare
    Asbestos.com

  2. Tory Zellick says:

    I am very sorry about your husband. A very sad, tragic story. You are a strong woman!

    I was 18 when my mom was diagnosed with breast cancer, and 24 when she passed. I have started a project in her honor, and was curious if you would be willing to review it. I would love to email in private if you are interested. My email is attached. Please contact me if you would like :)

    Tory

  3. Chris says:

    Aloha Robyn,

    Great website. I am so sorry for your loss. There is so much sadness in the world so it is especially poignant to see a happy couple as you two were (and can be in eternity).

    Thank you for being such a brave example and accomplishing so much good with what you are doing in the cancer arena. My father was a cancer research scientist. I still remember visiting his labs and looking at the rats and equipment. Mom passed with breast cancer long ago. Ironic perhaps.

    All the best to you and those 3 great kids you have,
    Chris / Rascal

    • Robyn says:

      Aloha Chris! Thanks so much for your encouraging words- I really appreciate it. I’m sorry for your loss as well…. seems as if everyone is touched by cancer these days. I’m hoping this is the year that researchers like your dad find a way to rid our world of this horrible disease. Take care and be well! xo Robyn

  4. David says:

    Hi Robyn, your story and website are very moving, and I am sure incredibly helpful to anyone going through this. Your family photo is lovely.

    You mention a ‘lipoma’ that was ignored for some time. I have one on my arm that I have never had fully checked out – I think you have motivated me to have it looked at more closely on my next checkup.

    Anyways, thank you for your candid writing. I hope you had a wonderful holiday with your beautiful kids!

    • Robyn says:

      Thanks David! I’m sure that your lipoma is nothing to worry about… but yes, I have a new mentality, if you weren’t born with it, get it removed…

  5. Dear Robyn,

    Every time that I read this post, your words leap out with such heartfelt emotion as if you’re telling Alan’s story for the first time. The impact is huge as obviously so was Alan’s essence and spirit. Not much time has passed for you yet your out there paying it forward to people like me. And for that, I say a simple but profound thank you. I wish nothing but the lovingly best to you and your beautiful children.

    Fondly,
    Dee Anne

  6. Chantel Fox (Catellyarose) says:

    Just read your story… u help me to be stronger! My mom has had this leiomyasarcoma for 7 years… 10 surgeries to include a craniotomy and Ghamma Knife Radiation. Went for a CT last month… they saw nothing, went for a PET CT and saw at least 7 new tumors. WOW… the oncologist didn’t give us a plan…. just said continue pain management. The Pain Management doctor is helping me with the referal hopefully it’s not too late. She is losing weight trying to take Morphine, Oxy and Neurotin, vomiting a lot. I’m scared, but not around her. My dad looks scared too. Mom is 58, I’m 40 and the oldest of 6 including 18 year old twin siblings who are scheduled to graduate high school on May 28th. Mom has always said she wanted to live to see her twins graduate and I am doin everything possible to make sure they enjoy their Sr. year, prom and etc. This is really hard and I really admire you for sharing your story…. it helps me give me hope that our family will make it even in the worst case scenario.

    • Robyn says:

      Dearest Chantel, my heart goes out to you and your family. Just take things one day at a time. You are doing everything possibly can. Remember as long as there is life, there’s hope. If there’s any info you need, or anything I can do to help, just let me know. Sending you love, strength and white light. Love, Robyn

  7. becky dunn says:

    I don’t really know how anyone can help my family but we are fighting stage four colon and liver cancer. it’s a hard and long journey.guess I need info where to get help. we have no insurance and live on a very small ss# check and doing our best to raise a 11 year old grandson.Is there any group that will or can help us. thank you so much for your time

    • Robyn says:

      Terry,
      I’ve got a few suggestions for you…

      1. check out http://www.beatlivertumors.org – Suzanne Lindley is the founder, and she has been living with stage IV metastatic colon cancer for 14 years (btw, her original doctor gave her 6 months to live). Please call them… their # is one their website. I know Suzanne will be able to help…. in terms of connecting u with doctors, financial assistance, peers, etc. She is beyond amazing!

      2. FREE discount prescription program http://03452c8.netsolhost.com/cancerhawk/2012/03/26/free-drug-discount-card/

      3. check out the Cancer Financial Assistance Coalition (CFAC) – it’s a group of national organizations that help educate patients & providers about existing resources through a searchable database of financial resources. This is a great place to start.
      4, Another resource to help navigate the financial side of chemo is Chemo101. Check out their financial & insurance section, where patients & caregivers can find information on sources of financial assistance, insurance-related questions, & other resources. They also maintain a list of Patient Assistance Programs (PAPs), which are programs run by pharmaceutical companies that provide FREE medications to people who can not afford to buy their meds.

      5. contact Emily from the Cancer Card Xchange (click here to learn more… http://03452c8.netsolhost.com/cancerhawk/2012/03/01/gift-cards-for-cancer-patients/) Tell her Robyn sent you…. she sends out $100 gift cards to cancer patients all over the country.

      I hope this helps! Stay strong… sending you love, hugs & light…
      xo
      Robyn

  8. Becky Dunn says:

    Just thought I would say hello ,I have had you in my heart for several days now. I think the Lord was telling me to go to your page again. you lift all of us up through your strong loving words. And I haven’t been in the best mood in the last several weeks. you know some times the old devil just gets to talking and a laughing and I myself some how gets twisted in with the old devil.thank you again for all you do not just for me but for everyone.

  9. Amy Jollay says:

    I just met you today, on an airplane, and I felt like I have known you forever. I got on your blog, and my heart immediately went out to you and your beautiful children. I appreciate what you are doing, and even though I don’t know your husband, I know he is smiling on you. I just wanted to see if there is anything I can do to help you and your cause. As I said, both of my parents, and a lot of friends have been affected by this terrible disease, and I want to help. Please let me know if there is anything I can do to help what you are doing, (financially, physically, etc.). I am already going to promote your blog in Chattanooga, and everywhere I go on a weekly basis. Keep doing what you are doing!! Thanks!

    • Robyn says:

      Hi Amy! Thank you so much for checking out CancerHawk. I really appreciate your offers to help- telling people about this resource would be tremendous. Knowledge is power…Thank you for helping me spread the word. Be well and take good care of yourself. I hope our paths cross again. xoxoxox

  10. Joyce Aleshire says:

    Hi Robyn, I am a facilitator for a Cancer Caregiver Support Group in Ohio. We have monthly mtgs. @ 2 different locations one at one of our local hospitals and at a church. We do have a page on FaceBook if you care to visit our site and see what we’re all about. My husband was also diagnosed @ age 37 with malignant melanoma, some 30 + yrs. a survivor! He is now the chair for Niles Relay for life in Ohio. We had 3 small children when he was diagnosed 2,4, and 6. Our kids heard the word cancer at a early age. He’s been involved with the American Cancer Society for over 14 yrs. our caregiver group started in 2010. Just had to drop you a note, I posted your website on our page, anything that is helpful to patients/caregivers. Thank you!

    • Robyn says:

      Hi Joyce,
      I’m honored that you think so highly of my site… truly honored. I just went on FB to check out Cancer Caregiver Support… fantastic! Love what you are doing to help cancer patients and survivors thrive. And I LOVE LOVE LOVE success stories. 30+ year survivor is music to my ears. Keep in touch and thanks for helping spread the word. Best, Robyn

  11. Cameron Von St. James says:

    Hi,

    I have a quick question about your blog. Could you email me when you get a chance?

    Cameron

  12. patti wilson says:

    thank you robyn there must be help and hope

  13. […] couldn’t have said it better ourselves. Thank you Robyn Gross Stoller for sharing ExpressWell with your […]

  14. Bronia says:

    Alexandra Yperifanos directed me here through a Facebook post. You are adorable Robyn…what a lovely tribute to your husband XO

  15. Eva Grayzel says:

    Robyn, What a loss for your whole family. I’m sure Alan is watching from above and very proud of all you have achieved in his memory.

    I’m curious to know: where on Alan’s arm the lump was. Did it grow over the years? Did it hurt when he pushed on it a little too much? How big was it? I’ve had a little one for years now. It hasn’t grown. And when I push it, it starts to feel tender, but I really barely ever notice it. I’ve seen a doc who thought it was just fatty tissue or a calcification. But, maybe i should have it removed.

    • Robyn says:

      Hi Eva, Alan’s lump was inside the brachialis muscle of his right arm. The doctors now believe that started off as a low grade something and over the years morphed into a high grade, aggressive cancer. Growth was not obvious and it was there for many years. It was the size of a baseball but it was buried deep in his arm so it was much larger than it appeared to be. Personally, my attitude has always been to remove anything that you weren’t born with…. but that’s me. Our doctors urged us not to do anything over the years as it was “a bigger deal to remove than keep.” I love what your doing to raise awareness of oral cancer…. your site sixstepscreening.org is INCREDIBLE! Best, Robyn

  16. Eva Grayzel says:

    My husband is a radiologist. I asked him which scan/xray could determine if it’s a cancer or not. He said that an MRI or CATscan can tell you if it’s something (size), but NO TEST can tell you if it’s a Lipoma or Liposarcoma. I will pursue having mine removed, which is in my forearm on the inside lateral side.

  17. Janey Peters says:

    I was on the cancer hawk site . I seen where a free blanket for breast cancer women is available . When you take chemo you are cold all the time at least I am . If there is a blanket available if you could let me know by email I would appreciate it . Thank You

    • Robyn says:

      Hi Janey, Please contact Patty from Layers of Love and she will mail you a blanket. Tell her Cancerhawk sent you and she’ll mail you one that my daughter made. Her email is patty@layersoflove.net . Sending you much love and light! xoxoxo Robyn

  18. Jacqueline says:

    Robyn,
    Your website is so wonderful.
    My husband was diagnosed with renal cell on March 15 2013
    Treated with torisel chemo 4x. Biopsy shows an additinal tumor adjacent to kidney into the lymph nodes.
    We found a really great oncologist (2nd one) he has stopped all chemo,
    we are on agressive path to get him healthy, before doing anymore treatments.My questions are how to make the public aware of this kidney cancer..he had no symptoms.And where can I get anymore info on this?
    My very best to you and your beautiful family.
    Jacqueline
    xo

  19. Beverly says:

    just read your huffington post on facebook….i can so relate to your experiences as my husband died of brain cancer fifteen years ago…you are doing such a wonderful service for cancer patients and their families…just knowing where to go for information and treatment is so helpful…best of luck to you and your family

  20. Shari Mendes says:

    Dear Robyn:
    A friend sent me your website. You are doing great work, please keep it up. You embody my motto, ‘when life gives you lemons, make lemonade.’ In July 2010, I was diagnosed with breast cancer. After one very rough year, I felt fine and back in the saddle! But I was shocked by how expensive it was to be seriously ill and I couldn’t bear the thought of patients dealing with the stress of illness AND poverty, so I started the Lemonade Fund (based on the above motto) otherwise known as the Israel Breast Cancer Emergency Relief Fund. I did some research and though there are good support organizations here in Israel, nothing exactly like this, an emergency financial fund for patients in active treatment, existed. I know that the internet has made the world a small place and the world of those of us who’ve been touched by cancer is even smaller. If you know of any patients living in Israel who might be in need, they can contact us at http://www.Lemonadefund.org. Feel free to add us to your links. All the best, Shari

    • Robyn says:

      Thanks so much Shari. I’d love to learn more about the Lemonade Fund and help spread the word about the amazing work you are doing to help people living in Israel who have been touched breast cancer. xo

  21. Amy Chaunt says:

    Dear Robyn Stoller,

    My name is Amy Chaunt and I am the Communications Coordinator for Second Firsts, Inc., a company that focuses on helping people rebuild their lives after loss. Our founder, Cristina Rasmussen, is the author of the upcoming book Second Firsts: Live, Laugh and Love Again (Hay House, Nov. 4 2013).
    As part of Christina’s new book launch we are doing a special interview series with phenomenal and inspirational men and women who have reentered life and inspired others to do the same. Christina admires your work and would love to include your story in her “30 Days of Hope”, featuring 30 inspirational men and women, all with a powerful story of overcoming loss. She wants to make this as easy as possible for you – all you have to do is record yourself on your iPhone, Skype or any other type of webcam, answer a few brief questions that we have prepared, upload the video and send it to us.
    Please feel free to contact me at your earliest convenience if this is something you would like to be a part of. The videos will be shared with 100,000 amazing people in the month of October creating a big inspiration cloud and helping people see that there is life after loss. Thank you and we hope to hear from you soon!

    Best,
    Amy Chaunt

    —————-
    Amy Chaunt
    Communications Coordinator Second Firsts, Inc.
    amy@secondfirsts.com
    401-787-2923

  22. Tuwanna says:

    Hello,

    I came across your website while doing research for myself. I was just diagnosed on April 2 with Vaginal Cancer. I’m in the process of trying to get things going and finding roadblocks. But, i’m strong and it sounds like you are as well because you have to be.

    Best of luck to you and your life after your loss and when you look at your beautiful children just know that your husband is always with you in your heart and your lovely babies you have.

  23. Liz Nye says:

    Robyn, I sit here with tears in my eyes as I read your love story. Yes, I said love story as that is what jumps out at me as I read it. You are an amazing, strong woman and I thank you for all you do. I too have fought cancer, lost a father to cancer and have 2 sisters with cancer. I am now an Oncology Nurse Navigator and looking for ways to assist my patients. Thank you for sharing all you have learned. You are an inspiration. Liz

  24. Macy says:

    I am so sorry for your loss. You are such an inspiration and your advice is golden. Thank you for sharing your story. I apologize in advance for posting this here I am just hitting every tag line with cancer in it to post this for a friend in another state. I don’t know what else to do. The Griffith Family
    I hope this message lands in the appropriate hands. I don’t know who exactly I should turn to with this so I am reaching out to everyone I can.. I am trying to find help for a family who so desperately needs and deserves it. This family has been thru so much and continue to fight so hard just to stay above water and keep food on their table and heat in their home. The . Mom is fighting for life in battle against cancer, Dad is partially disabled after a fall that took away one elbow and left his legs and feet in life long pain and stiffness. To top it all off their only teenage daughter has had two surgeries and requires frequent visits to the doctor for brittle bone disease. Daughter is a delightful driven intelligents student and they only have eachother They spend all of their money and time at doctor appointments and pharmacies. Mom has also suffered a heart attack and is almost unable to talk anymore because of the cancer mass in her throat. She is going to undergo surgery in a last ditch effort to buy her more time with her family. Mom has spent the last year confined to a bed because of a SI injury that has left her unable to walk.
    Her daughter is being bullied at school on a physical level because of her families circumstances and being teased about her Moms appearance from chemo therapy. . . They are up to their ears in medical bills and seriously have too much to deal with . People always say why didn’t they ask for help when they hear news about acts of desperation. They are asking for help please join my mission to find them the help they need. If you know of any other places I could look to share their story or that could be of help please let me know it would be so appreciated. They are trying to raise a couple of thousand dollars to get them out of medical debt to pay some bills and back rent and to take a few more family outtings to the zoo or a theatre because Mom is terrified her last days on earth will be stuck in her bed and that her daughters last memories of her Mother will be grim and suffocating. Mom really is desperate to do a little something to lighten the situation for her only daughter she is heart broken to see how her daughter worries and tries so hard to take care of her Mom. Her daughter Meg has too much to carry on her shoulders she needs and deserves some time to be a happy kid. She deserves to have a few last good memories to carry her after her Mom is gone. I am sure you get many requests for help and I realize you can’t respond to them all. I beg of you if you can not take a lead in this please try to think of and share with us someone who can. Thank you.

    http://www.gofundme.com/Electric-wheelchair-MOM

    • Robyn says:

      Thanks so much for reaching out on behalf of your friends. Does the hospital system where your friend is being treated have a social worker or navigator on staff? I also suggest that you connect with CancerCare.org or LiveStrong.org as both organizations have qualified social workers that may be able to assist. You can also use the right hand side of my site and click on the various types of assistance to learn about different organizations and the services they provide. You should then connect with each organization directly to see if they may be of assistance. Sending the Griffith’s much love & light.

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