Wow, I haven’t posted here in a long time. What better day to come back than New Year’s Day?
It certainly was an exciting year, and plenty happened since my last entry of June 9. While in contract for the short sale, we found another house we liked a block away, and bought it while still in contract for the other. We closed on the house July 18, and less than 18 hours later on July 19 (which also happened to be Lexcie’s 34th birthday), we marched over to Ossining Town Hall and got eloped!
That day, a Metro-North train also derailed on our new home line (The Hudson Line), and we wound up driving into work. Since we eloped, we hadn’t taken time off of work, and both went in. On the way in, I called both my mom and boss and told them I got eloped. Mom was shocked, and of course, owning a bridal shop, asked me what I wore. The dress above was the only one in my wardrobe that doesn’t wrinkle, and since we didn’t have much at the house yet, that’s what I wore! It took us so long to get to Manhattan with traffic, by the time we drove in, parked, and got to our respective offices, my co-workers had set up a part with cake, champagne, and flowers. I was pleasantly surprised!
Apparently I’m quite talented at pouring champagne towers.
The house has been quite an adventure so far. It’s an 1884 Victorian and has a lot of little quirks, which we liked. It’s a never-ending project though! Right now, we’ve been without heat since the end of October, and it’s been quite the hassle trying to find someone who will covert us from oil to gas within a decent price range or is responsive. We’re hopefully getting somewhere, though. I’ll be chronicling all of my adventures soon on HouseByTheHudson.com.
A month later, I was finally told by my oncologist—after 8 years—that I could finally be called the “c” word. “Cured,” that is, which is huge.
There were plenty of other highlights, so 2013 will be hard to beat. I’m looking forward to what 2014 might bring!
I’m not making any resolutions this year, because I’ll probably break them all, but I leave you with my favorite proverb: Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours.
For the past 1,000 days, I participated in Day Zero’s 101 Day Project, a unique challenge that inspires you to set and achieve your personal goals in life. My friend Caitlin had started one, and I was intrigued. At that point, I had been in five years’ remission from cancer and was basically a lump when it came to goal setting. The diagnosis had resulted in my having a hard time looking in the future, as I got in the mindset of “Well, anything can change quickly.” I thought that starting the list would be better than a so-called bucket list in inspiring me to look forward again. (And I’d just beaten cancer… why would I want to think about kicking the bucket?)
The challenge runs 1,001 days—I started September 12, 2010 and ended today, June 9, 2013. To count, tasks must be specific with a defined result that represents some amount of work on my part. Here’s a summary of my first list and what happened. Bolded items are ones that were completed. Not bad for my first try, with 54 of 101 goals achieved. I start Part II tomorrow, and will aim for 75 next.
This week, I returned from Stupid Cancer’s sixth annual OMG 2103 Cancer Summit for Young Adults, a nearly four-day conference for young adult cancer patients, survivors, caregivers, professionals, and advocates. It’s the fourth year in a row I’ve attended this amazing conference, which began in New York City but has been held in Las Vegas for the past two years. Before you think this is some boring oncology event, think again. Here are 10 reasons why you should attend an OMG Summit:
1) People understand what you’re going through – You can drop words like neutropenia, stenosis, and metastasis without people asking you what they mean. No one cares if you have to zonk out in the middle of the day or can’t drink. You’re not the only one having a hard time losing weight, growing hair, or trying to find your way again after cancer. We’ve all gone through a lot and can relate with each other, share what we’ve learned, and make the whole crazy cancer and survivorship ride a little easier for each other.
2) You won’t be judged or pitied – No one cares that you have one testicle, no nipples, a bald head, a red scar snaking across your chest, or walk with a cane. We all have our battle scars. And it’s nice to finally say, “I have/had cancer” without someone giving you the pitiful “Awww, you’re too young… my cat has cancer too” spiel.
3) You’ll learn something new – With 25 breakout sessions and 50 speakers covering myriad topics for patients, survivors, and caregivers, you’ll arm yourself with plenty of knowledge, no matter if you’re newly diagnosed or 10 years out of treatment. From sex to survivorship, environment to insurance, and fundraising to fertility, there’s something for everyone. Many of the sessions are repeated so you don’t miss out on vital information. The speakers are not only top healthcare professionals, but advocates, caregivers, and survivors. Click here to see the panelists from OMG 2013.
4) You’ll be entertained – This isn’t your grandfather’s oncology conference. One of the biggest problems adolescent and young adult (AYA) cancer patients and survivors have is age-appropriate support. But the OMG Summit changes all of that, delivering what could have been ho-hum information with straightforwardness and humor. For instance, OMG 2013 closed out with a comedic routine by Dr. Zubin “ZDoggMD” Damania, who in his own words mashes “medicine, music, and madness to educate and entertain.” We also watched the First Descents documentary Out Living It, played Re-Mission 2 at HopeLab‘s exhibitor booth, and watched as Stupid Cancer presented filmmaker Andrew Jenks of MTV’s “World of Jenks” with its Social Impact Award. And there was plenty of time to dance.
5) You’ll hear the latest on the AYA advocacy and research front – Top doctors, oncologists, healthcare pros, and non-profits are on hand to talk about rapidly changing AYA advocacy and research. (I have to say, I felt pretty darn smart coming out of sessions after learning about genomics and neurospychology.) Most sessions end with a Q&A period, allowing them to answer your burning questions on topics that run the gamut: treatments, late effects, sexuality, complementary medicine, carcinogens in the environment, and more. Plenary sessions focused on genetic breakthroughs and personalized medicine, as well as progress in AYA research and AYA clinics.
6) You’ll meet people working hard to make sure the AYA voice is heard – You’ll never meet a group of more dedicated folks than the employees and volunteers of Stupid Cancer and all of the non-profit and advocacy groups that attend and exhibit at the conference. With young adults accounting for 72,000 new cancer diagnoses each year, it’s critical that the medical community understands our needs from treatment to survivorship and beyond.
7) You’ll be inspired – There are so many inspiring people contributing to the AYA cancer community, from starting non-profits to running marathons and embroidering hats to granting cancer patients and survivors dream days. If you have no clue how to get involved, you’ll find plenty of ideas at the OMG Summit.
8) You’ll laugh and cry – Where else can you be telling someone a cancer joke one minute and then crying over shared experiences the next? Once and a while you’ll even get thrown a curveball, like a surprise marriage proposal. Plenty of tissues are provided. (And alcohol for those who need it.)
9) You’ll learn to get busy living again – The OMG Summit is not for people who want to stay in bed all day and cry, “Woe is me.” It’s about not letting cancer rule your life and giving it the bird. Sometimes you need a little help, and everyone in attendance is there to give you ideas and support to make that step.
10) You’ll make friends for life – If there’s anything positive that comes out of cancer, it’s the amazing, supporting, fun friends you make—a rapport that lasts well beyond the walls of the OMG Summit.
If you missed OMG 2013 this year, you can still attend the OMG2013/East one-day conference in New York City on September 28. It’s a bit more intimate that the annual event, but has the same, great purpose and people. Hope to see you there!
On September 12, 2010, I started a 101 in 1,001 list—a list of 100 goals that I would like to complete in 1,001 days, or in this case, by June 9 of this year. I created it to get myself out of a slump that began after I finished treatment for Non-Hodgkins lymphoma. After a life-altering event like cancer, it sometimes gets hard to dream and envision the future, but instead of a bucket list (I hate that name anyway), this seemed like an easier, more tangible way of reintroducing goals back into my life.
I’ve done pretty good so far: 44 goals have been completed and 13 are under way. I was supposed to chip away at three this week, but things always seem to get thrown for a loop. That included ice-skating at Wollman Rink (goal 69; I refuse to call it Trump Rink) with my friend Deena, but squats at the gym this week killed my calves. Rain and snow bumped my plans to march in the New York City St. Patrick’s Day Parade tomorrow (goal 50), but Alex and I are thinking about making some creative hats and instead participating in the New York City Easter Parade. We may see a local stand-up/theatrical show called Welcome To Lawn Guyland this weekend to get a head start on goal 38 (attend three local performances).
Overall, I still have a ways to go (and that includes reading 15 books in 86 days), but it’s been a fun experiment so far and has encouraged me to go beyond my goals, including learning more recipes, getting a once-a-month massage membership, seeing more independent films, and becoming more healthy. I don’t think I’ll be able to get everything done (for one, goals 65 and 66 of visiting the Statue of Liberty and Ellis Island have been impacted by Hurricane Sandy’s aftermath), but it’s helped put me back on a path of having dreams again versus having fear of a future that can change in an instant.
Now that I’m rounding the corner, I’m going to put a renewed focus on reaching more of those goals. Wish me luck!
I recently found out that Emily Sun, a 36-year-old mother living in Australia, has relapsed for a second time from Non-Hodgkins lymphoma, and her only hope for survival is a life-saving stem cell transplant. The problem: She’s Chinese, and there are not as many people of Asian descent signed up to be donors.
I first met Emily in a Facebook support group in 2010, when she was first undergoing treatment for primary diffuse large b-cell lymphoma, the same lymphoma I was treated for five years earlier (read more on my page “Living With Lymphoma“). She was undergoing the same chemotherapy regimen that brought me into full remission, and soon she was in remission as well. As she recovered from those grueling months, she was integral in helping me put together PMBCL.com, a support website for those with the same cancer we had.
But Emily’s remission didn’t last long. In less than a year, she had relapsed, with the cancer invading her central nervous system. After another treatment and radiation to the head, she went into remission again—only to have the cancer come back again. It’s unusual, from what I’ve seen, for this cancer to come back twice—so now she has to undergo the stem cell transplant as a last-ditch effort to knock the cancer out of her body.
Learn more about Emily:
There are a few ways you can keep up with Emily’s efforts:
- Her website: Emily Needs Stem Cells. A few of her friends and I put this together to help spread her appeal and get more people involved in getting Asians to sign up for bone marrow registries. Emily also writes a blog on the site.
- Her Facebook group: This is where you can find the latest on Emily’s progress and fundraising/awareness efforts.
- Her YouTube channel: There’s a video about Emily and her second remission, as well as a book written for her by her five-year-old son, Luke.
Emily’s currently undergoing treatment with R-ICE chemotherapy to prepare her for an autologous stem cell transplant, where she will receive her own stem cells she banked as insurance. It will then be followed by a allogeneic stem cell transplant, in which she will receive stem cells from a healthy donor. And that donor needs to be of Asian descent in order to most likely match to Emily. The donor can be from anywhere in the world, but a match would more likely be found in someone of Chinese, Taiwanese, Japanese,Korean, Malaysian, Vietnamese, or Singaporean descent. In Australia, the donor should be under 45, either male or female, but the match can be made worldwide.
What is a stem cell donation?
There are many misconceptions about stem cell donations—particularly that stem cells are taken from fetuses. Donations are actually taken from healthy adults. It’s a procedure that restore stem cells that were destroyed by high doses of chemotherapy and/or radiation therapy. After being treated with high-dose anticancer drugs and/or radiation, the patient receives the harvested stem cells, which travel to the bone marrow and begin to produce new blood cells.1 Read more about the procedure here.
How you can become a donor:
If you are of Asian descent, you can register with your country’s local database. (You can do so even if you’re not Asian, as you can be matched to another patient in need of help). It’s an easy test: you swab your inner cheek or get blood drawn, and if you’re a match, you’ll undergo further tests to see if you’re able to donate stem cells to the patient. The cost: free. You can check out the following links in your country to see if you qualify:
- Australia – Australian Bone Marrow Donor Registry
- China – China Marrow Donor Program (English/Mandarin)
- New Zealand – New Zealand Bone Marrow Donor Registry
- Singapore – Bone Marrow Donor Programme
- Taiwan – Buddist Tzu Chi Stem Cells Center (English/Mandarin)
- USA – Asian American Donor Program
- USA – National Marrow Donor Program (and its Asian-specific registry)
- All other countries