Month: August 2013
Bald is Beautiful!
Thanks and lotsa love to my cousin, Neil—Dad of Ayden and Arie, who are mentioned in my last post—who shaved his head in solidarity, “for the ones being strong with the fight!”
The Harrison Situation: Telling the Kids
Mouse over or tap the image to access the controller to stop the slideshow.
My family gathered this past weekend, as is our tradition each August, to celebrate my Grandma’s birthday. (She turned 92; happy birthday, “Bs!”) My cousin Charlie and his wife Amy were there from Ohio with their two boys, Harrison, age 7, and Grant, age 4. I see the boys a few times a year, so they’re pretty comfortable around me. This time, though, Harrison had a reaction that I didn’t know about until after the fact, and which shows how important it is to be honest with kids about cancer and other illnesses.
Thinking back, I noticed that Harrison was a little more timid around me than he has been during past visits. He and Grant arrived at our Grandma’s house full of energy, and I kind of realized that when Harrison came through the door and noticed me, shortly after saying his hellos to everyone in the house, he ran outside to explore and play with cousins Ayden, 7, and Arie, almost 3.
‘Can I catch it?’ This seemed so obvious once I heard it. When kids hear that someone’s sick and has to take medicine, we tell them, ‘Don’t get too close, you don’t want to get sick, too!'”
A little later, Charlie said to me, “I think Harrison was a little freaked out when he saw you without hair.” Now it started to click. “We’ll have to have a talk with him later, and let him know what’s going on.” I told him that I’m very open about discussing my diagnosis, and would be happy to talk to Harrison if he and Amy wanted. I can’t remember if Harrison and I said goodbye when they left for the evening to have dinner, but I do remember that I didn’t want to push it, and so I gave him some space.
When they came back the next day, Amy told me about the conversation that she and Charlie had with Harrison before bed the previous night, and it sounded wonderful. They told him that I had cancer, that some of the medicine I’m taking made me loose my hair, and then asked him if he had any questions. Two of them blew me away, but for different reasons. The first was, “Can I catch it?” This seemed so obvious once I heard it. When kids hear that someone’s sick and has to take medicine, we tell them, “Don’t get too close, you don’t want to get sick, too!” The next question was, “Can I give him a hug?” That one made my heart melt. It was so touching, because I think he was afraid that he might hurt me, and wanted to make sure that it was ok, first.
I was curious, so I asked Neil, who is Charlie’s younger brother, and Neil’s wife, Tianna, if they had spoken to their kids, Ayden and Arie, and if the kids had asked any questions about me. Neil replied, “Arie is too young to really understand what’s going on. Ayden does understand that you’re not feeling well, but knows that the doctors are taking care of you. He’s not freaked out. To him you’re the same old Joe.”
As adults, we sometimes forget how black and white the world is through a child’s eyes, so it’s important to give them the facts that we feel are appropriate, and the opportunity to let them ask questions that we answer honestly, keeping in mind that sometimes the best answer is, “I don’t know.” Kudos to Charlie, Amy, Neil and Tianna on their parenting skills, and thanks to Harrison, Grant, Ayden, and Arie for helping us all remember what it’s like to just be cousins, and have fun at Grandma’s. Spending time with my family has been great medicine, and I hope that for them, seeing me in good spirits, staying focused and positive, and being open about my diagnosis, is good medicine for them, too. After all, Ayden’s right. I’m the same old Joe I was before lymphoma, just with a few extra cells, and a lot less hair.
Shrinkage
Over A Thousand Dollars in Three Days
Since the event is over a month away, I’ve set the bar higher, and set a new personal fundraising goal of $2000. If you’d like to donate, please click to visit my personal fundraising page, and if you’d like to walk with me on September 25 in NYC, click to join Team Joe C.
Every amount, no matter how small, will help fund life-saving research and make a difference. Only have a dollar to give? No problem! Better yet, ask four friends each to match you, and now you’ve got five dollars. What, you say you can each afford to give two dollars? Awesome, now you’ve raised ten dollars that will help fund research for treatments that will wipe out cancer!
For everyone who has donated so far, again, thank you so much, and thanks in advance to everyone who will be giving. One last thing, please be sure to ask your employer if they’ll match your donation and make it count twice!
Light The Night Walk: How to Give and Join Team Joe C
Wow, only a day into my fundraising for the Light The Night Walk in Manhattan on September 25, I’ve hit 22% of my goal, and have a fellow team member! Thanks so much to everyone who has donated and signed up to walk with me. Your generosity will fund therapies and treatment advances for blood cancer patients, and will be helping to save lives. To give, visit my fundraising page, and to join us on the walk, visit the Team Joe C homepage. Be sure to check out the donors’ comments, which will be an inspiration to me every step of the way, and beyond.
Help Me Light the Night on September 25
My friend Sue told me about The Leukemia & Lymphoma Society‘s Light The Night Walk, which raises money for advancing blood cancer treatments and therapies. I’ve decided to participate on September 25, at Hudson River Park’s Pier 57 in New York, and would like to invite you to support me.
There are a few ways that you can help. Click to:
- Visit my personal fundraising page and make a donation.
- Join or Donate to Team Joe C, where you can sign up to walk with me and get a fundraising page of your own.
- View the Light The Night Walk Ways to Participate page, to register for a walk near you, and make a donation to a walker or team.
I’ve set a personal fund raising goal of $1000, and a team goal of $10,000. Every amount, no matter how small, will help us to meet these goals. If you can’t donate, you can help by sharing the link to the team page with anyone who might be interested, and of course, by continuing to keep me in your thoughts and prayers, as well as my team members.
Thanks in advance for your consideration and support, and I hope you can join me in NYC on September 25!
Click to watch Light The Night Walk 2013 Participant Video on YouTube.
Yes, Lymphoma Has a Ribbon
Just as a pink ribbon symbolizes breast cancer awareness, a lime green one is for lymphoma.
Hey, Hey, I Shaved My Head, Today
(Thanks to the Eurythmics, for the inspiration behind the headline for this post.) Yesterday, my hair started falling out in clumps. Today, I pulled a Britney Spears. So, without further ado, I’m debuting my new look. I like it!!! I was born with a full head of hair, so this is quite literally the first time my scalp has seen daylight. Speaking of which, I need to stock up on sunscreen—as well as lollipops so I can rock the Kojak look. Who loves ya, baby?!
Two Weeks After Starting Chemo
Still continuing to feel great! (Knocking wood, now.)
Had the first follow up with my Oncologist yesterday and all is fine. Since I did so well with the first round of chemo, they’ll up the dosage of the next one. Guessing I’ll be more fatigued afterwards, but otherwise don’t anticipate any side effects that I can’t tolerate, or don’t have a remedy for. Since I’ve been off the Prednisone for several days and the facial swelling hasn’t returned, the Dr. feels that the mass has obviously shrunk.
Hit my first hurdle on Sunday night when I had a lot of discomfort in my lower back and legs, due to a shot I get to boost white blood cell production. Tylenol and ice took care of it for the most part, so not the end of the world. They feel that I may not have the pain as severely next time, if I have any at all, and will give me a stronger pain reliever if I need it.
Hair started to fall out today, exactly 2 weeks after starting chemo. This is what I expected, and so had set up an appointment for a nice summer buzz cut, which is a look I actually like a lot! Not sure how much more will come out, but will go “Kojak” as my Grandma used to call it, and buzz it closer if it starts to get patchy.