Punta Mita Sunset, Courtesy of Nancy Novak, S/V Shindig
Hi Everyone, and Happy Dang New Year to y’all!
I hope everyone enjoyed the holiday season, and it was full of fun, family and friends for you. It’s never been a favorite time of year for me, and this year was no different. There were some “issues” with my new doctor, and he has been fired. More on that later. The beneficial part to all of that is I have moved my care to City of Hope, and couldn’t be happier. They have not forgotten what it’s like to be ill, and they definitely get it.
I am taking part in a clinical trial, helping researchers get the dosing down for a new targeted chemo. I’d tell you the drug’s name, but it’s just a number at the moment, and I wouldn’t want to have to hurt you. The drug is in small pill form, and I take 3-6 per day, depending on the study parameters. There is a daunting list of side effects others have experienced, but I am so fortunate to say, I have had none to date. For the first month, I go to CoH once a week, and after that, it’s once a month for study purposes.
The standards CoH seems to follow are standards that seem to have fallen by the wayside as patients are no longer referred to as patients, but as customers or clients. I believe insurance companies are spearheading this as they strive to remove decision making from physicians and instead give it to their own “medical boards.” Having played with that aspect last month, I can attest to the frustration it brings. The staff at CoH actually answer their phones, and if they don’t know something, they go find the answer and get back to you in short order. I am always greeted with a smile, and as the campus is new to me, there is no shortage of helpful volunteers ready to escort me to my destination. My doctors and nurses are very responsive to my questions and comments. One nurse took the brunt of a mini meltdown last week, and greeted me with a huge smile and hug on my next visit. After the issues with my other doc, I felt I was free-falling through space; CoH caught me, and has lifted me up. As corny as it sounds, they’ve lifted me up with hope.
The doctor (I use that term loosely) I saw last month nearer to home is someone who should retire, I believe. I saw him once early in the month, and we scheduled up some scans and blood work. Before any of those could be completed, I began having episodes of sudden onset shortness of breath. When I would call him, his response would be to go to the ER, but he never wanted to follow up. The 23rd of the month was the day my scans were scheduled. That morning, I really couldn’t breathe. I called him again to see if he wanted to see me in the office. He answered that he didn’t have anything else to offer me, and thought it was time for me to just go into hospice. Over the phone! With no recent scan or blood work, he just gave up on me. Needless to say, I was crushed. Fortunately, my sister Missy found a palliative care group out of Hoag Memorial, and they were very responsive. Turns out my shortness of breath was related to a very rapid heart rate that would come on without warning. The palliative care group prescribed some effective medication to help with my breathing, and my cardiologist is monitoring my heart rate closely. The week after Christmas I followed up with this oncologist, and he said, “Whoops! Maybe you aren’t ready for hospice yet…” Sorry, you’re fired.
So, I’m starting new with new doctors, new drugs, and a new facility. This helps give me a renewed feeling of hope that I’m on the right track. Thank you, Erich, for getting me in to the City of Hope so quickly, and thank you, Missy, for Dr. Nguyen and the CARES program at Hoag. There are not enough thanks for me to send your way…
I hope everyone has a great 2015, and never forget who loves ya!