More About Hockins

A hilarious addendum to last night's post about the bill from Hopkins for the Breast Cancer Clinical Trial interview. I opened a letter received in the mail from them. They want me to contribute to the "Fund for Johns Hopkins Medicine"! Oh, the irony. I can't stop laughing...

A Raw Deal

I have given up the fight with Johns Hopkins. On Aug 16, I blogged about my experience with trying to enter a Breast Cancer Clinical Trial at Hopkins. I had received a bill for almost $400.00 and was upset that it could cost me money to participate in a trial. I mean, who ever heard of paying money to be in a drug regimen trial? I hadn't, but apparently I'm behind the curve. I called and called Hopkins. The Billing Dept, the Outpatient Medical office, and Dr Emens herself, twice. Dr Emens was just emphatic that the interview she gave me earlier in the month was billable to my insurance and that whatever portion of the bill not paid by my insurance was up to me to pay. She told me that this was standard practice, that all her interviews for the trial were billable. This was new to me but, as I said, I am out of the loop. Sometime in the last 15 years, doctors and medical institutions starting billing insurance companies for trial activities like interviews and blood tests. Surprisingly, the insurance companies pay for 'reasonable and customary' fees. And the rest is left up to the insured, just like 'real' medical care. Who knew? Still, I kept arguing with Hopkins and Dr Emens. I was not told until after the fact that I would be billed for the interview.I was billed just as if I had sought medical treatment at Hopkins, which I didn't, because I get perfectly adequate - better than adequate!, wonderful! - treatment from my docs at Sinai. Not to mention the fact that finances are tough now for us. I usually only work two days per week; quite a drop in pay! The "I can't afford this because I have cancer and have been unable to work much" excuse holds absolutely no water with anyone at Hopkins. Plus, when I told some of the story to my Oncologist, she knew the secret already - that patients now pay to be in clinical trials. So, instead of letting Hopkins send my bill to a collection agency and ruin my good credit, I pay. Not much at a time, though. I did manage to weasel them into only $10.00 per month with no interest!

A Plus!

Yay - no more binding, crushing, smashing, restrictive giant sports bras! And no extra layer to capture sweat! Just me and a t-shirt! (And pants, of course.) Ahhhh...

More surgical adventures

I had a small surgery done yesterday. The boobette is gone. The fluid and tissue that had collected in it was removed. The boobette was a seroma, or collection of fluid, under the skin following the mastectomy. My left side has healed up flat. Well, somewhat flat; there are always small puckers or bumps in the skin left behind with the scar. The seroma was on the right side. I think I did a few things after the mastectomy that might have contributed to the seroma. I didn't know that such a thing could happen, so as long as I felt capable of doing something, I did it. I think pulling weeds in the garden and doing an upper body workout at the gym didn't help. The surgical site was still healing inside and that strenuous activity may have caused more fluid to be encapsulated. The surgery I had yesterday was much, much less extensive than the mastectomies. But, this time I'm favoring my right side until the healing has really progressed. I'm even clicking the mouse with my left hand. I'm eating with my left hand also, but I've had years of practice at that. When I take a lunch break at work, I'll often do a crossword puzzle and write with my right hand while I eat with the left.

Boobette

I should write about happy things. More happy things happen than bad things. It's incredible that, even with cancer, life is still so good. I have almost no hair, but it's growing back. I have breast cancer, but the fight is going, mostly, very well. I've been through a lot, but I can still bike and do other things that I love. It's just that I have so much more to say about the crappy things that happen! I guess that's just the way people are sometimes. Get me mad and I'm off and running - at the mouth, that is. So, yeah, I'm mad right now. Mad that the 'seroma' that was a result of the right side mastectomy didn't 'just go away' as promised. It never even began going away. I have had a 'boobette' on my right side since the surgery. I will concede that the surgeon did a good job. That , being aware of my future plan to explore reconstructive surgery one day, a little extra skin was left behind. It was probably just happenstance that the seroma, the boobette, never resorbed. Now, though, the thing is infected! That's right, infected. The right side of my chest is the color of a deep blush and I'm on antibiotics for ten days. It's messed with my range-of-motion, feels puffy and stiff and made me really mad!

It's been a while since I posted...

Oh, yes, it has been a while. Maybe because the chemo thing is over and the surgery is over and now is the time to just work on healing.
I was talking to a co-worker last week about my cancer experiences. I don't see Dave very often on the PET/CT coach so we're not as close as Kristen and I are. Plus, it's just his personality to be a little more reserved. Dave is a really nice guy; very polite and considerate. My cancer is often the elephant in the room and I could tell that he had questions but was too nice to ask them. So, at one point I told him to ask away. Having this blog and sharing so many things on it has made me willing to answer any and all inquiries. Turns out that Dave was not especially interested in the nuts and bolts of cancer - side effects, treatment plans, etc. - but in how I coped, emotionally. Boy, when the guy opens up, he's got some real probing questions! I liked it. He wanted to know how I lived with having cancer. What I thought about the future. Whether I thought about dying or being really debilitated. These are questions I've certainly grappled with but to put it into words was sort of like honing my whole philosophy about cancer. It was a good exercise for me and I thank Dave. Here's my basic answer - keep moving forward! And, assume that things will turn out great! Keep doing everything that you can possibly do to fight and be as positive as possible. Think more about all the great things you'll be doing when all the treatment is over not about what you may have lost. Because, ultimately, cancer is not something that anyone wants but it sure has given me a new outlook and I'm thrilled to have an absolute mandate now to do more and be more!

Like Getting Blood from a Turnip

A few months back, my oncologist told me about a Hopkins trial that I was a candidate for. Dr Tuica said that my cancer cell type and treatment program fit the criteria for the trial, run by a doc friend of hers. I called up the Hopkins doc and we spoke at length about what would be involved. It sounded like a big time commitment, but since this is my Year of Breast Cancer, I decided to sign up for the trial. Not only did the treatment on trial have a strong possibility to actually do me some good, but I would be doing my small bit to help advance science! So, I made an appointment and went to Hopkins. The first wrong note sounded when the folks at the registration desk asked my for my insurance information. Why would they need that? I was there for a clinical trial, not treatment. I asked, but the clerks at the desk didn't know why; they were just doing their job of not letting anyone past the portal without insurance info on record. I had my vital signs checked and some blood drawn. The investigating physician conducted a long, detailed interview and sent me home with a thick sheaf of papers. My signature was need on the informed consent document, but it was much too huge to get digested at the interview. The next step was to go home and sign all the forms, then return for some additional set-up procedures (like testing to see if I would be allergic to any of the reagents used, etc.). The second wrong note sounded during the interview. I asked, unnecessarily I thought, if this would cost me or my insurance company. The doc said that they would only bill me or my insurance company if, during the trial, they did any therapeutic medicine. I tried to pin her down a bit, to see what that meant. Sounded like no- no charges would be billed because, after all, this was a trial that I agreed to participate in out of the goodness of my heart, not a required part of my treatment. The whole issue cleared up nicely when, a few weeks later, I received a bill for $380.00 with $1,330.00 'pending'! Whoa! I had no idea that participating in a medical trial can cost you money now! I remember the day when the participant got paid a small stipend. Apparently, those days are over and the docs need your money, as well as your body, to do a trial. I called the billing department and protested and am now waiting for my 'appeal'. I think that good ole JHH will have a great deal of trouble getting any money out of me. I didn't need that stinky old trial anyway!