6.1.06

third strike and it's out...

A

s someone who's experienced the effects of cancer during her young adult years, I feel that one of my callings is to be an advocate for others who are in the same boat. Patients in their twenties and thirties have a whole other set of concerns as opposed to the "traditional" cancer patient in their fifties or sixties. To help get the word out, I've been submitting to the Op-Ed sections of different publications. This essay's been rejected by three publications, so now I'm sharing it here.

Twenty-four: Young, Fabulous, just out of college, and diagnosed with Leukemia

February 19, 2005: the day that would change everything started out like any other. My husband, after some difficulty landing a job post-college, had gotten a break with a seasonal position at the post office and was hard at work by four o’clock am. I slept in a little; the youth center where I worked was hosting our annual carnival for the local military community, and the preparation hours had been long. As families, coworkers, and I arrived to the fairgrounds, the scents of cotton candy and funnel cakes permeated the air as children happily shrieked while on the rides. The mood was relaxed and celebratory.

I started to walk across the grounds, and in the corner of my eye, I saw a car race through the parking lot and screech to a halt. When I noticed that the maniac in question was my husband, he was running down the midway at full tilt. When Eric reached me, the look on his face said it all: he collided with me and told me the news between sobs and gasps for air. A routine physical for his new job had revealed that his white blood cell count was approx. 175,000. The normal range is between 4,500 and 11,000. Eric’s leukemia had returned with a vengeance.

Cancer is a terrible disease for anyone it touches. For every inspirational survivorship story like Lance Armstrong, there are many more people who fight the fight but don’t make it in the end. There are few other diseases that devastate the afflicted so thoroughly. For those who do beat cancer, overcoming the physical disease is just the beginning as the patient then has co-pays for months and months of medical care, prejudice in finding new employment post-treatment, and the lingering secondary effects of harsh but necessary treatments.

The devastating effects of cancer are compounded greatly when young adults are affected. I had chased the only post-college job offer I received to work for the Air Force in Oahu, and Eric had followed me there immediately after his college graduation and our wedding. Five thousand miles away from our families, we were forced to end the honeymoon early and negotiate a confusing system of specialists, referrals, and prescription-drug benefits. While learning to clean Eric’s chemotherapy catheter and giving him growth-factor injections, we often had to deal with being treated differently by the hospital staff as the youngest adult patients on the floor.

Eric and I have good health insurance through my job, but were still hit with $300-$400 co-pays each month that were a struggle to pay with my entry-level salary. When we went to our local Social Security Office to apply for disability, Eric was immediately turned down for all benefits when it was determined that he hadn’t worked enough to accumulate the necessary forty S.S. work credits. (When we asked the representative how Eric was supposed to have worked enough to obtain the credits while having cancer twice since 1999, just graduating from college, and only being 23 years old at the time of application, the answer was, “I’m sorry that there is no policy to address your concerns…please write your Congressman.”)

When the news came that we would need to go back to the mainland for a bone marrow transplant, the stress of getting our few possessions, our cat, and ourselves to Maryland was added to the mix. The pressure of performing at my job, acting as a caregiver and advocate for my husband, making arrangements for the move, finding a new job in the vicinity of Johns Hopkins hospital, keeping our family members and friends posted on Eric’s condition, and caring for household duties took its toll on me. I struggled to do it all and felt that I was succeeding at nothing.

However, in meeting other 20- and 30-something cancer patients, I realized that Eric and I were luckier than most. We did not fall into the gap that many people our age experience. One of us had gotten a job with a full benefits package immediately after college. Young adults just out of college are the most likely to be uninsured or underinsured-too old for their parents’ plans and not established in careers with full benefits. Also, our health insurance was willing to pay for Eric’s bone marrow transplant, no questions asked. Many leukemia and sarcoma patients have their claims denied after cutting-edge treatment that may prove to be life-saving is deemed “experimental.” In a shockingly generous gesture, our hometown church organized a benefit dinner to help raise funds that could be used for paying our co-pays, prescriptions, and medical equipment expenses not covered by insurance.

While Eric and I are thankful for the breaks we’ve gotten during our journey with leukemia, the added difficulties of being a cancer survivor in early adulthood have made this a disheartening experience. We still haven’t figured out what Eric will tell potential employers about the significant amount of time after college when he wasn’t working.

My husband’s first leukemia treatment, in 1999, was at a pediatric hospital that did not explain options for preserving one’s fertility. A pre-marrow-transplant fertility test last July confirmed that, at the ages of 24 and 25, we will never have the opportunity to have children. All cancer patients, even those in their teens, should be made aware of their fertility preservation options.

The special concerns of young adults with life-threatening illnesses need to be addressed by our nation’s leaders. The high cost of treatment (even when one is insured) is problematic for all patients, but is a double whammy for recent graduates with loads of college debt, entry-level salaries, and little or no savings. Blocking Social Security disability to young adults is another financial hit that no cancer patient should have to face.

Each year, 150,000 people between the ages of 18-40 are diagnosed with cancer; it’s also the leading disease killer among 20-39 year-olds. It’s high time that the unique needs of the many young adult patients and survivors are no longer ignored.

posted by amanda @ 10:36 AM

7 Comments:

At 1/06/2006 07:41:00 PM, Blogger Jackie said...

Thank you for sharing! I encourage you to keep submiting this to as many journals or papers that you can, word needs to get out there!

 
At 1/07/2006 09:00:00 PM, Blogger Minerva said...

That is wonderful Amanda - keep submitting it - it needs to be shared, opened and noticed...

Minerva

 
At 1/08/2006 09:59:00 PM, Blogger Hope said...

I echo minerva - keep submitting it - I trained as a journalist Amanda and this is good writing....not to mention that your story needs to be heard.

 
At 1/09/2006 08:41:00 AM, Blogger amanda said...

Thank you, Jackie, Minerva, and Hope. 2 out of the 3 have told me that the subject matter is "too heavy"--which is infuriating. Part of the problem with the media painting such a rosy picture of cancer survivorship and treatment is the fact that they won't print anything that shows how things really are!

 
At 1/09/2006 04:47:00 PM, Blogger Miss Misery said...

Your story is so touching Amanda, you should write a book about it! Keep submitting =)

 
At 1/11/2006 01:39:00 PM, Blogger Caloden said...

Amanda,
A friend sent me a link to your blog. You and Eric have an amazing story. I write for weblogsinc and have created a post about you two. I hope you don't mind. Here is the link http://www.thecancerblog.com/.

Hoping good thoughts for you both.

 
At 1/24/2006 03:44:00 PM, Blogger Richard said...

Amanda,
What a story, and kudos to you and Eric for having the courage not only to face it but to go public with something that a lot of people feel they have to hide. Your posting really touched a nerve (I saw it at the Cancer Blog). I was diagnosed with thyroid cancer in my thirties, right out of the blue without even a history of anything remotely like it in my family. Unfortunately I didn't have insurance and was shocked that in a country like ours access to medical care for a devastating illness can actually depend on your ability to pay. But in the meantime cells don't wait to metastasize until you can beg borrow and steal enough to pay for care and medications. It's disgusting.

I "feel you pain" about being turned down for trying to get your story out. My own cancer memoir is represented by a crack agent and she hears the same stuff--"too depressing." Everybody is supposed to be a Lance Armstrong, pedalling their way to victory--but the reality is it's an uphill run up a slippery slope. (My hat's off to Lance for deserving his sporting and personal triumphs, but I have to wonder how much better we cancer patients would fare if we had corporate sponsors instead of insurance companies and hospitals telling us to go away.) Why is it that with the zillions of people touched by cancer, meaning the millions of cancer patients like your husband and their family members and friends like you, the Powers That Be think that there's no "audience" for this slice of reality?

You keep plugging, you will find your audience. Your writing is wonderful and your story is real and from the heart. And it's a story that needs to be heard. You and your husband are in my thoughts and prayers.

Oh, I'm a good few years out from my thirties now and I can tell you there is something to look forward to. Cancer is a real priority-setter, and the experience can give you super crystal-vision about who your friends are--and maybe more importantly--aren't. It's a fast track to finding new and helpful ways to look at life and humanity that most folks have to wait their whole lives for.

I would love to put a link to your blog on the site I've put up in advance of my book, http://www.diaryofaroguecell.com/ and also at my blog http://www.roguecell.blogspot.com/ and would deem it an honor if you would stop by the site and sign the guestbook, and also contribute your views at the blog.

We can make a difference if we all keep connecting, and refuse to shut up.

Prayers, encouragement and best regards,
Richard Day Gore

 

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