Hope Matters As I Celebrate My 10-Year ‘Diagnosiversary’

Hope Matters As I Celebrate My 10-Year ‘Diagnosiversary’

Last January, I celebrated my 10-year “diagnosiversary.” I received a diagnosis of follicular lymphoma, a slow-growing, but incurable blood cancer on Jan. 15, 2008.

My diagnosiversary is always a celebration. This year’s milestone is special to me because at the time of my diagnosis, I read that the median survival of this disease was eight to 10 years. As a 40-year-old father of three children (then ages 6, 8, and 10), I cried at the thought that I probably wouldn’t see them graduate from college. The more I thought about it, the worse I imagined things would be.

“Please, God, just give me 10 years,” I prayed one night. “They’ll be 16, 18, and 20 — maybe old enough not to need a father.”

What I have learned

I have learned a lot since then about follicular lymphoma, and about being a patient.

For example, I learned that although eight to 10 years was the median overall survival rate back then, it was also an old statistic. It was so old that it didn’t include the effects of the treatment rituximab that changed the game for all FL patients.

A lymphoma specialist told me, “Lots of what you read online about follicular lymphoma is already out of date.”

I also learned that most people who get FL are in their 60s. Statistics for people diagnosed in their 40s are very different.

And I learned that many FL patients not only have a high quality of life but also that they live for a long time.

I learned a lot by reading, talking to other patients, and asking my doctor lots of questions. And the more I learned, the more hopeful I became.

Living with hope

And that’s what I want to do with this column — share the things that have given me hope over the past 10 years.

It’s easy to feel hopeless as a cancer patient. We feel hopeless at lots of different times — after we are diagnosed, during and after treatment, when we are told that we need treatment again. Or when someone says the wrong thing to us. Or just when we’ve had a bad day.

I’ve certainly had those times myself.

But I’ve also come across lots of things that have given me hope — that feeling that everything is going to be OK, even when I don’t know it for sure.

When my 10-year diagnosiversary came around, I took a little time to reflect. I thought about how my life had changed over 10 years. About the things for which I was thankful. The things I still worried about. And most importantly, things that had given me hope. I decided to make a list of 10 of those hopeful things — one for every year of survival.

My list went past 10.

In this column, I will share those hopeful things with you. I want them to give you the opportunity to do a little reflection of your own. I want them to spark a change in the way you do things.

Mostly I want them to give you hope.

***

Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lymphoma.

16 comments

  1. Joh says:

    My husband was diagnosed with low grade Lymphoma 3 days ago. Still waiting for an appointment to get more detail about type, stage, treatment and prognosis etc, but your piece about hope has been a light in a dark day. We have three children including one with Down Syndrome. I am frightened about being alone and trying to cope but hopefully we too may have some years still together to see them grow up. Thank you.

  2. Hi Joh. I’m so sorry to hear about your husband. I remember those days right after the diagnosis, and how hard it is to wait for answers. If there’s one thing I’ve learned in 10 years, it’s that there is lots to be hopeful about, as we learn more about lymphoma and the best ways to treat it. I hope you’ll come to see that in the days ahead, and find some peace. Please let us know when you find out more. ~Bob

  3. Maki Yashiro says:

    Hi,Bob. I am a Japanese FL patient.
    I am really surprised about a coincidence; I also received a diagnosis of FL on Jan.7, 2008.
    But on my 10-year“diagnosiversary”,I started relapse treatments, now finished. The treatments have taken effect.

    Your column is very impressive to me. I believe your column must encourage other Japanese FL patients. May I introduce your column in my Blog in Japanese?
    http://la-chocolatiere0321.tea-nifty.com/blog/
    Thank you.
    Maki

    • Hello Maki. I’m sorry to hear that you needed treatment after 10 years, but I am happy to hear that the treatment was successful. Yes, do link my column, and Lymphoma News Today, to your blog. I’m sure your readers will find lots of useful information on the site.
      I hope you and I can both celebrate many more diagnosiversaries in the years to come. ~Bob

  4. Hi Bob,

    Thank you so much for taking the time to write on this website.
    I have marginal zone lymphoma, a rare slow growing one which
    has been hard to treat since only 3 per cent have it. I had read
    once that it can resemble follicular. I was diagnosed two years
    ago and was given the wait and see treatment. I have felt fine
    but am now going to start 4 treatments of rituximab. I have
    two unmarried daughters ages 26 and 32. I have had hope and
    and thankful every day for feeling good. I have had a few bad
    hours thinking I will never be at their weddings. They are two
    kind, young women and am thankful I have seen them develop.
    Thank you for giving me hope today as I read this column
    often.
    Donna

    • Hi Donna. I’m glad to give you some hope. Obviously, we have two different lymphomas, but similar stories. I also waited for 2 years, and then had rituximab. It’s been over 8 years since then. I wish you lots of success with the rituximab, and many more years with your girls.
      Stay hopeful. ~Bob

  5. Jolene S says:

    Hi Bob, I just marked my 4 year “diagnosiversary” this year and have had a good outcome so far. I can’t find the actual list of 10 things that you mention in the column. It looks like that part is cut off; the last thing I see is “In this column, I will share those hopeful things with you. I want them to give you the opportunity to do a little reflection of your own. I want them to spark a change in the way you do things.

    Mostly I want them to give you hope.”
    Is there a link to your page or another page?

    • Hi Jolene. Congratulations on the 4 year mark. I hope you have many more diagnosiversaries.
      When I said I wanted to share my list of things that have given me hope, I meant that I will keep writing about them, instead of listing them all at once. My plan is to write at least once a month, and talk about a new one each time. I hope you’ll come back and read some more.
      I do have a blog, Lympho Bob, that I have been keeping since I was diagnosed. You can read lots more there. http://lymphobob.blogspot.com/
      ~ Bob

  6. Hannah H says:

    Hi Bob – thanks for this. I’m 36 and was diagnosed two weeks ago with FL, and I’m trying to navigate this new reality – figuring out how to talk about it and who to tell, wondering whether I need to change my life plans (I had just started to take steps toward becoming a single mom), making sense of a “stage 3” diagnosis at my age, and just kinda… processing. Mostly I feel super optimistic, and in all other ways my health is excellent. I’ve been thinking a lot about what’s important to me (and what’s not), and it’s actually been a refreshing shift in perspective.

    But every once in a while, I just feel scared. And it’s helpful to read this and to see other people’s comments and realize I’m not alone in this. Hope totally matters.

    • Hi Hannah. I’m sorry to hear about your diagnosis. I remember those first few weeks, feeling that same roller coaster. Like you, I was young and healthy when I was diagnosed. I’m sure, in the next few weeks, you’ll get a better sense of where you are and what it all means. That might help you think about life plans. I do know that put off a lot of things after I was diagnosed. I kept thinking, “I shouldn’t bother with that, because I don’t know what’s going to happen.” One day I kind of mapped it all out, and I realized that if I kept that attitude up, I was going to talk myself out of even getting out of bed in the morning. That took a while to get to. For now, it’s OK to feel scared. Try to stay hopeful, and keep looking to other patients — there’s a lot we can share.
      Good luck with the next few weeks as you learn more about your next steps.
      Bob

  7. Jerry D. says:

    Thanks Bob.

    It has been about a year since my FNHL diagnosis. I went through 6 rounds of chemo and I am now in remission and getting Rituxan every couple months. Feeling good and hoping it stays that way.

    Thank again for your thoughts of hope and encouragement. My Oncologist/Hematologist says he thinks there will be a cure in my life time. I am 64 and hope he is right.

    • Hi Jerry. Congratulations on the one year. I hope the remission continues for a long, long time. I’m not a doctor, so I can’t say if there’s a cure coming soon. But I will say that the advances I have see in my 10 years as a patient have been amazing, and we’ll probably see even more in the next few years. So I hope he’s right, too.
      Stay hopeful.
      Bob

  8. Marc Rosello says:

    Thanks for sharing Bob. I was diagnosed with FNHL in January and I just finished my 6 Chemotherapy treatments this past May. I also finished 17 radiation treatments 10 days ago. I start my Immunotherapy treatment next week, and will be looking forward to my first “diagnosiversary” (love the term) next year. I appreciate the blog and all the information from survivors like yourself that provides comfort and hope for all of us in different stages of diagnosis and treatment. Best to you and all fighting!

    • Thanks, Mark. Sounds like you’re doing well, with treatments and with attitude. I like “diagnosiversary,” too. I’ve seen “cancerversary,” but diagnosiversary makes me smile.
      Good luck with the immunotherapy. Plan something spectacular for January. Take care.
      Bob

  9. William May says:

    Hi Bob

    I am a regular reader of and commentor on your blog. You know my wife’s ‘good news’ story so I thought it worthy of posting here.

    In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in a NIH CAR-T trial NCT02659943 and was infused on March 2, 2016. Her only side effect is low immunoglobulins that require an IVIG infusion every 4 months. As of September 12, 2018, she has been in complete remission for 30 months. Clinical trial studies show that CAR-T cells may result in long-lasting remissions for some people who have follicular lymphoma. There is more information on CAR-T for fNHL patients and people considering CAR-T at https://fnhlben.wordpress.com/

    William

    • Hi William. Nice to hear from you. Thanks for sharing your wife’s story. I think one of the most hopeful things we can do is share our stories and let others know that they’re not alone/
      I’m happy to hear another update about your wife, and I hope people who are interested in CAR-T will visit the site.

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