I first went to the doctor a little over 5 years ago because I felt like I had the flu; runny nose, sore throat, the glands on my neck were swollen and even what I thought was a gland in my chest was swollen. Yes, high in my chest, barely breast area.
I went to my doctor expecting to get antibiotics and good cough syrup. What I got instead was freaked out. My doctor said “You have a lump in your breast. IF you had health insurance I would send you down right now for an ultrasound and a biopsy.” I didn’t have health insurance though so she sent me home with a prescription for antibiotics and cough syrup.
That could have been the end of it right there, I would have taken the meds, my sinus infection would have cleared up and eventually I might have died of untreated breast cancer. Because I didn’t have health insurance.
I’m lucky enough to be in a position where I have some great resources though. Friends who know all about services available for the poor. So, I first went to a health clinic for the working poor and students with no insurance. Sliding scale fee, I bring my income info and the visit is $15.
They think the lump is nothing but send me to the Matthew Walker Comprehensive Care Clinic. This is like a mini hospital for the poor, a fantastic place. I’m sent there for an ultrasound that is $40 but when I get there they want to do a mammogram too which is another $40. $40 I don’t have. I firmly state that I can only afford one and that I believe an ultrasound is a better test.
They bring in the doc and he’s pissed that I think I have any right to any input on what tests are going to be run on my body. I can’t get any where with him so I agree to both tests with deferred payments.
The mammogram shows nothing as I knew it would, remember this lump was high in my chest, so I get the ultrasound. The doctor, reading the tests, and still miffed it seemed, about my asserting myself, tells me “Well, looks like breast cancer but hey, you get free mammograms for life from now on" and sweeps out of the room. The tech is horrified and apologizes profusely. It was not this doctors job to tell me I had cancer.
Somehow automatically I am enrolled into the TN Breast and Cervical Cancer Program and I didn’t have to pay for either test. Later I learned that I have Betty Pinson, one of our rock star advocates here at DK to thank for that. Eventually, I was enrolled in TN Care, the state’s insurance program for the poor. At the time it was accepting only women with children, pregnant women and women with breast or cervical cancer.
During this time I was in such a state of shock. I could hear the ocean roaring constantly in my ears and everything I looked at was a bit blurred, like a Monet painting. And my voice was very small. A teeny, tiny, barely able to be heard voice.
That was the only voice I had until a treatment plan began to develop for me. Without my input. Now here again I have to say that I am very lucky, I grew up using a certain kind of doctor; D.O.’s. Much like M.D.’s but with more focus on preventative and holistic health care. I had also gone through cancer with a few beloved pets so I knew what kind of treatments I did and didn’t want.
I found my voice very quickly and used it. In a quiet reasoned manner, often backed up with studies and research, I advocated for the treatment I wanted, and there was nothing typical or standard about it, I was totally out of the box. I had doctors who were willing to listen and some who loved my input. One nudged an intern, smiling, after I refused to have radioactive dye injected into my body and told him “See, this is the new patient of today, they advocate for themselves”.
I loved finding my voice, it made me feel empowered; like I was taking action, not just sitting still being a victim of cancer. It helped me in getting the care I wanted and to cope with the fear inducing diagnosis of cancer.
Several months after being treated for cancer I began advocating for others on a small scale. Helping members of my support group learn to talk to their doctors about the care they wanted. Helping them negotiate bills with hospitals. It was a great feeling helping others, seemed to make my voice even stronger and helped me cope with living with cancer.
I helped a few people that way but felt I needed to do more. I realized that while TN did not accept expanded Medicaid we did have a lot of great clinics that other states didn’t, so there were a lot of people in the country who were getting cancer and not being able to do anything about it, or their choices for treatment were very limited, if they had a choice at all.
My TN Care insurance only lasted for 2 years and now that program is closed to anyone but women with children. I went without insurance for 3 years worrying about what would happen if...well, if anything; breast cancer returns, or I break my leg.
I just got health insurance this month, not Medicaid but still, thanks to Obama. That is a great relief. For me. There are still hundreds of thousand of people without insurance in the stupid states that did not accept Obama Care. Republican run states.
What do I care about those other states? Well, as Ms. Spent Youth told me when I asked her what to tell a friend in Utah about why she should care about politics in another state:
I'm not sure what to tell your friend, except that we are a UNITED States of America and that all states matter to one another. Also, when we take a look at our contact lists in our smartphones or our emails, we know they comprise people from all over -- not just our own states. Don't we want all our contacts, family members, friends, acquaintances, et al., to be living in a state where justice reigns? Where they have the RIGHT to vote without having to pay $36 for a voter ID? Where they have equal access to quality health care that's affordable? Where do we draw the border lines between equality and inequality, between good schools and just-okay schools? One nation, indivisible, with liberty and justice for all, Ms Spent Youth
How can I best advocate for anyone with cancer? By using my voice to elect Democrats in every state. In my never humble opinion the way you elect Democrats is to register voters, because it’s a known fact that the more people vote, the more Democrats are elected. Voting for me is a way to use my voice to scream — in a very good way.
So I joined onto 90for90, a voter advocacy movement started to honor Dr. Ferguson Reid, the first black legislator elected in VA since reconstruction. He could help plenty of people in a medical practice but as a legislator he could help enact laws that impact incredibly large amounts of people.
I read everything 90for90 has to say on their website. I pay attention to the politicians, organizations and business’s who support it, because I want to support people who think voter registration is a priority.
I especially want to support the candidates who support 90fo90 and for me, supporting them is not about giving them money because I don't have any, but I can write articles about candidates and help spread the word to those who can give money.
I also sent the 90for90 Facebook link to everyone on my email list and asked them to “like” it.
I joined my business (great free advertising while I support a good cause) and joined my Daily Kos groups onto it. They have a huge special section for Daily Kos groups and another for Daily Kos articles. I use my voice quite firmly to encourage everyone I know to do the same.
When I was diagnosed with cancer I was just lucky that I have the personality that I do, a little loud and abrasive at times. That’s what enabled me to speak up and use my voice. I worry about people who are kinder and nicer than I am; people who stay down in the hole I was stuck in, where my voice was so very, very small, the hole that is so hard to get out of long enough to advocate for themselves.
I want a health care system that advocates for them; first by being open and available to them. The only way to get that as far as I can tell is to elect Democrats; city by city, state by state until we have a country where health care is a right that doesn’t have to be advocated for. Supporting 90for90 seems to be the way to do that and it seems fitting that it was started to support a Doctor who has spent all of his life advocating for others.
Monday Night Cancer Club is a Daily Kos group for anyone who has cancer, has a loved one with cancer, or who has questions, issues, or information to share about cancer, including clinicians, researchers, or others who have a special interest and can help to educate our readers. We have many different members who fit all these categories, sometimes more than one at a time. Please share if you can, or just listen; there is plenty to learn just from reading our extensive catalogue of past diaries and postings. All are welcome to use this group as a resource. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to cover physical, spiritual, emotional and cognitive aspects. While most diaries focus on a specific topic or area relevant to cancer, each diary is also an Open Thread for sharing concerns, announcements, and information. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
If you’d like to write something for the first Monday of a month let us know and we’ll sign you up.
February — Kate August —
March — Tracy September — outragedinSF
April — outragedinSF October —
May — tapu dali November —
June — Tracy December —
July —