Arnie’s Rebounding World: A Daughter’s Perspective By Dori Goodman
This month, my column is actually written by my daughter Dori, who expressed interest in writing an article from her perspective. I am, of course, proud of her for doing this.
Dori was in fourth grade when I was diagnosed with multiple myeloma. She is now 17 years old and a junior in high school. She loves fashion, travel, and writing. My number one priority is to make sure I am around for her graduation a year from now.
For those who are wondering, though, I am doing pretty well right now. The “CYCLONE” regimen seems to be working and is quite tolerable, so I am finishing up another cycle. Then the plan, at this point, is to move on to a donor lymphocyte infusion in June.
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Being the daughter of a cancer patient is certainly a quirk to my average, 17 year-old life.
I can still vividly remember the day that my parents had told me about my Dad’s multiple myeloma diagnosis. I was sitting up stairs with my babysitter coloring when I heard my mom call for me from the downstairs. My parents sat me down on the couch between them, and told me that my dad was sick and would be going out of town for a while to visit some doctors.
Sure, I thought it was a bit strange, but as a fourth grader, cancer was not something I could even comprehend. To be honest, it was difficult to see beyond what my mom would be packing me for snack the next day. I had no idea that this small conversation in my life would have a big impact for the next seven years.
If I could go back and have a conversation with myself at the time I was just finding out about this “thing” called multiple myeloma, I would probably tell myself these few things:
Arnie and Dori Goodman
First of all, this really isn’t just going to be Dad fighting this battle, we are fighting it as a family. As cliché as that sounds, it really is true. His bad days will be our bad days, and his good test results will bring a smile to our faces. We will have to stick together as a family through Thanksgivings and New Years in a small hospital room. Even though the location of these celebrations won’t be ideal, the fact that we are together to celebrate special moments should be more than you could ask for.
Also, appreciating the things that you and Dad get to do together should become more important. Appreciate some of your favorite times spent together simply getting to sit in the back yard by the pool and read. You don’t have to say much, but getting to sit together and enjoy each other’s company is what should always be the best. Also enjoy watching documentaries and TEDtalks with him or going for a walk, be it down the street or down the hall of the hospital. These little moments will end up being the greatest.
Being a teenager will be difficult because it can be hard to separate your own life from the other crazy things that go on, such as unexpected set backs in treatment, visits to the hospital, and cancelled trips and plans. Balancing schoolwork, friends, and extracurricular activities is already difficult enough. Then tack on the worry of having a sick parent, and at times it may feel really difficult to keep your head above water. But I promise, trying to keep school separate from home will be very helpful. Although it would be easy to pull the “I couldn’t do my homework because my dad has been sick” card in every class, getting the work done (and getting that A in the class) will be that much more rewarding.
It is never easy having a sick family member, and it can sometimes be easy to feel brought down by the roller coaster ride of events that we experience. However, I think that in the end it is things like this that only make us stronger, better people. There is always good to find in the bad. My dad has inspired me to be a harder worker, a more appreciative person, and to take advantage of opportunities while they are available.
I hope you enjoyed hearing things from my point of view and that you, a family member or a friend, can read this and learn from my thoughts and experiences thus far!
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Dori, this is a great article and your Dad must be very proud of you! It sounds like your father is a very lucky man to have such a supportive family. When someone receives such a devasting diagnosis as MM, it affects not only the one with the disease but also all those who love them and share in their life. Thank you for sharing your thoughts and perspective. You sound like a person who will go far in this world. Good Luck in your future endeavors. I hope your Dad can be right there beside you to watch your success.
Arnie, great article, take heart in the fact you have a wonderful family..Lots of people like me who have to face myeloma alone aren't so blessed..Best Wishes, Ralph
Dear Dori,
This is such a beautiful article about your dad, you and your family life. The love came shining through.
My best regards,
Cris Sullivan
Aloha Dori,
Thank-you so much for your article! I am printing it out to share with my 12 & 13 year old sons who are in the same boat you are and who are just starting their journey with a sick Dad. You have helped lots of people by sharing your feelings and observations here
Keep your chin up and Carpe Diem - seize every day!
Aloha
Tom Shell
Great article. Glad to hear from a family member. I am the mother of a 34 year old daughter who was diagnosed with MM in January 2012. She has had 4 months Velcade/Dex treatment, a stem cell transplant & now maintenance therapy. The worry , concern & fear was overwhelming in the beginning. The fear has abated some but not completely. All though she is doing well right now every time she goes for bloodwork the worry jumps 10 fold. It is hard for me to jump back & remember that she is an adult & not the 3 year old who would get a kiss on the booboo that would make everything all better. I can't make this go away. It is encouraging to read articles from people who are doing ok 13 years later. Although I appreciated her before now every time together seems so much more.
What a lovely article- about family love and quality of life! And just being human and not wanting to focus on cancer all the time! I wish this sweet family many happy years together to just enjoy each other.
Great job, Dori. Our daughter was almost 9 and in the 3rd grade when her dad was diagnosed at just 43. She is a freshman now. Seeing her burst into tears when I told her he was going to lose his hair from the medicine broke my heart into a million pieces. Since then, like you, she has learned to navigate the MM roller coaster, knowing that things can change and plans go down the tubes in the blink of an eye. The most recent of these being Easter Sunday, when our family dinner had to be moved from our house to my sister's as I took Tim to the hospital with disseminated shingles. Life will always throw curveballs, it is our ability to react and adjust to these changes that will help us through them all in the future. You girls learned that the hard way, but, it is a life lesson that will serve you well. Arnie: you and my husband have the same goal, to watch your beautiful daughters graduate high school. My best to all of you!
Really appreciated Dori's article. Even though I am an adult with my own children, I have a parent who is going through it as well. And while my challenges are not school work (though my kids' school work and their response to it does create struggles!)we all have overpacked lives and need to step back and reflect on what's important. Thank you for bringing that reminder to us all!
Dear Arnie and Dori,
You have both discovered what’s important in life! Thanks for sharing.
My daughter was eleven when I was diagnosed with MM. At first I was so shocked I didn’t dare to go on the internet, afraid of what I would find. When I finally did I read that 3 year survival was 30% (old statistics!). When I told my family my daughter immediately walked up to me, gave me a hug and said very calmly and determined; Well Mum, then you’re going to be among those 30%. And that was that!
Good luck with DLI in June. I have now received three increasing doses and have results from the first two ones and my numbers are heading in the right direction.
Thank you Dori, for sharing your perspective on dealing with this difficult disease. You've conveyed your experiences very well...your father is no doubt very proud of you!
I can remember quite vividly when my wife and I sat down with our two children nearly 3 1/2 years ago (then 20 and 15 years of age )and told them I was in the early stages of a terminal illness. There were tears...oh yes....we all shared many tears. But the thing that I told them that I wanted them to take away from that moment was to know that seeing the two of them continue to succeed in life would be what would make me most happy as a parent and that my biggest NEED was to see them continue to pursue their academic and career goals in spite of my diagnosis. Yeah...take that MM!
So keep on succeeding Dori, I'm betting nothing could make your father happier!
Best,
Steve
Thanks Dori for sharing your perspective. My son (14) and daughter (10) can certainly relate to the ups and downs related with treatment. We try and look for the positives in our journey and focus on those. Sometimes those negative aspects appear overwhelming but as a family we have overcome them.
Arnie, I am glad your treatment is going well. Good luck for your DLI, hopefully you will have a fantastic graft vs myeloma response.
All the best,
Libby
I also write a column for the Beacon, Dori. Your father has been an incredible inspiration to me! He talks about your family often. You should be very proud of your father--he has helped a lot of people in so many different ways since his diagnosis. Good luck to you and your family!
My mum is currently in the process of being diagnosed and all signs point to myeloma. I'm 17, in my last year of school and I have my trial exams in 3 weeks. My younger sister is 13. Thank you Dori for writing this article, my family is just coming to terms with the possibility of myeloma at the moment. It's really encouraging for me to hear the point of view of someone similar to my own situation. The ups an downs just keep getting bigger.
You seem like a gorgeous person and I wish the best of luck and happiness to you and your family.
Taylor xx
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