Comedian Kelli Dunham, who is the partner and caregiver to a fellow Hodgkin’s warrior, brought up these points at a recent show:
1. It doesn’t have to be oozing green pus before I seek medical care.
2. I don’t have to love my body to take care of it.
3. Never go to the ER alone.
4. Every small step I make for health is a big step.
5. I deserve health care.
6. I embrace even my accidental inner superhero.
I am the queen of letting doctors walk all over me. It’s no use lingering in the past, but I often wonder if I have had cancer for the past 2 or 3 years, maybe more. I went to various doctors about unexplained itching (finally diagnosed as “chronic hives”, although those normally last only 6 weeks while mine stuck around for long over a year) and lower back pain, particularly at night or after drinking alcohol. Both are symptoms of Hodgkin’s and a simple CT scan should have been ordered. But it wasn’t. With the back pain, I had lymphoma in the back of my head but I was 19 or 20, and since the doctor never brought it up, neither did I. No further attention was paid- I didn’t even have an MRI, was just told to keep taking ibuprofen and do a few back exercises.
We as people put a lot of faith in our doctors. It is important to trust your doctor but it is even more important to be a well informed patient yourself. My oncologists deal with me calling them up on the phone at least once or twice a week to ask if this sore throat is something to worry about or whether or not I can eat X and any number of questions- and they have no problem returning my calls or having a nurse return my call because my care is important. My current oncologist never talks down to me and explains everything that I ask about in a reassuring way.
I have noticed something about others my age- late teens through twenties- and healthcare. We are almost a lost generation in terms of getting healthcare. Realistically, youth is on our side for most serious illnesses. However, many of us are priced out of health insurance. Even with upping the age limit to 26 to stay on parent’s health insurance, many of our parents are struggling with health insurance themselves due to the economy and there are any number of other reasons why this is unrealistic for many young people. Good jobs are hard to come by for anyone, but especially recent grads and people with only a few years experience under their belts, and more and more of these so called good jobs are cutting benefits.
I’m the lucky one. This horrible disease hit me when I have excellent insurance and the most supportive workplace and group of colleagues that you could possibly find. I’d rather take the burden of this experience and use it to add credibility and emotional appeal to my new found crusade for awareness and advocacy for young adults’ healthcare than to see anyone I know try to do this without insurance or capable doctors. I don’t say that to be inspirational or selfless- it’s the one thing I can really see myself doing that will have a REAL impact on a significant amount of people. This is my accidental inner superhero.
I truly believe that healthcare is a right. You don’t have to agree, but you should agree that we are a better, stronger country when everyone is able to be in the best physical and emotional shape possible. It scares me when I see how many people this is simply not a possibility for- and not because they are buying big screen HDTVs, spending money on drugs, or being wasteful.
It also scares me how many doctors potentially missed my cancer. People my age just don’t think about cancer and too often our doctors follow suit. It’s something that happens to “old people” or little kids off of St. Jude’s commercials. It doesn’t happen when you’re in your twenties or thirties, or even in your fourties. Unfortunately, 70000 people between 15-40 are diagnosed with cancer each year in America. You don’t see us as often, but we’re still there and we haven’t seen as much of the success in cure rates rising as other age groups. My cancer is an exception- Hodgkin’s lymphoma has made HUGE strides in cure rates. But much of the research and support for cancer is simply not available to young adults as it is to older adults and children. In this journey, I have met people who were diagnosed with breast cancer in their mid 30s (or earlier), brain cancer in their late teens, or lymphoma at age 15. I found out a friend is an ovarian cancer survivor who was hit when she was 17. 17. It happens more often than anyone would like to think. You’re either the oldest in your pediatric oncology ward or the youngest in the adult cancer center and fall into this gap of care where no one quite seems to know how to handle your practical and emotional needs and concerns.
While dealing with this, I have decided to get involved with the I’m Too Young For This! Cancer Foundation. Wristbands are coming, coworkers. 😛 I have had to postpone a phone meeting with the VP of Operations out of the NYC office about relaunching the Boston branch of iy due to mutual colds, but hope to start getting that off the ground soon. I’m also meeting with a local nonprofit dealing with young cancer survivors next weekend to see what support they can lend. iy is appealing because it takes a similar stance as I do- it sucks, there’s no hiding it sucks, so better make the best of it. A bald pubcrawl comes to mind. 🙂
In 3 weeks is the 4th Annual OMG! Cancer Summit in NYC and I’m hoping to go once I figure out how much I can afford to spend on traveling down and hotels/potentially friends’ couches. I’m looking forward to networking, learning, and gaining more advocacy skills while going there. Plus, lots of fun. There’s a “Cancertastic Cruise to Nowhere” with an open bar on the Hudson. Excellent. I got the OK from my onc to go, just need to figure out the logistics of whether or not I can go.
In closing, I have my own set of points I’d like to share. These are particularly in regards to my younger readers, but applies to everyone:
1. Trust your body. If something doesn’t feel right, you are always correct to talk to your doctor about it.
2. Use Dr. Google sparingly. He has poor bedside manner and doesn’t like to give you all the answers.
3. Don’t wait to go to the doctor and don’t let anyone tell you that you are a hypochondriac. Better to get checked out than to not, even if it’s nothing.
4. Don’t let anyone tell you that you’re too young.
5. If something is going on, let people in. There’s no shame in broadcasting that you are struggling. It lets you know who your real friends are.
6. I repeat Kelli in saying that you deserve health care. Even if you have to fight for it. Even if people try to tell you the contrary. You deserve health care!