dear doctor...

here is an email i sent to my doctor tonight. it's kind of long. it's been a rough couple of weeks, but as of today, not only am i cancer free, but i also am no longer continuing my current form of chemotherapy (a bad reaction today discharged me which will be saved for another post). but i've been having a big problem with my doctor and the lack of communication, and a few of you have wondered how i was going to address it. here's what i sent to him tonight...but on a positive note - I'M CANCER FREE AS OF NOVEMBER 17th. until february you pesky little cells...(that's when i get my next scan)...

Hi Dr.
After reading your "secret website" and going through my allergic reaction today, I think I've finally reached a point where I need to address some concerns.

I'm a researcher. I research EVERYTHING. But not just on the internet. I go by personal experiences. So when I found out about my cancer, we called [our doctor friend] asking for his best referral. His best referral was you. I spoke with my doctor. She said her best referral was you. I logged onto a patient review website and you had exceeded expectations of prior patients. I have never had a male doctor. But I needed the best. I was told you were straight to the point, no sugar coating, and that I wouldn't necessarily "get warm fuzzies from you," but I would be getting the best. I didn't need a friend, I needed a doctor. So, to you I went.

And I have to thank you for your sense of urgency in helping me on my road to get cured. You worked as fast as [our perinatologist] on my delivery of my twins. You started radiation right away, and chemo soon after. I felt your sense of urgency and although I kicked and screamed sometimes, I knew you knew what you were doing - and I trusted you because you were the best.

I know I don't need a friend, I need a doctor. I don't need the warm fuzzies, but I do need communication. When I called eight times before the holiday was coming and left messages regarding my scan results with both [my nurse] and the front office staff and didn't hear from you, I was upset. And when you called and said you didn't get messages, I had a hard time believing it. I think your staff is amazing. [My nurse] has put up with a lot with me as a patient. And I truly appreciate her. She calls back every time I have a question, she is patient with inserting my iv. She answers any questions I have, and with seeing all of the sick people she does, she still smiles every day. So, when I know I call leaving messages with her and the front staff, speaking with her directly atleast six times, and she tells me she is leaving messages for you to call and you say you never got a message - I have no reason to not believe her. Because I know [my nurse]. I've been dealing with her for 8 months now. I know how she works. My concern is you say you're available 24 7 and I didn't get a call back for ten days. This happened the month prior as well when I called everyday over a 4 day period because of my excruciating back pain, and you called back on day 5 in the 15 minutes that I was giving my children a bath and I could not answer the phone.

Regarding my scans, you said my scans were clear - but I was told there were some densities on my pelvis and that I may need a bone scan. But you told me that my scans were clear. I don't know what to believe. Am I in remission? Although you told me any visible cells are gone, what are the densities? And are these questions something I need to make an appointment for? Because if that's what I need to do, then I will do it. But making it through the holidays without any of these questions being answered - made it really rough.

But, my greatest concern came about today when I had my reaction to the cisplatinum. You were in the office. I heard [my nurse] tell you about my reaction. I heard you tell her to keep you posted. I heard you joking around with one of your patients. But you didn't come in to explain to me what happened, explain to me what would be next. [Another nurse] explained everything. On leaving, [my nurse] asked what I wanted to do next. I told her I was done. And she said you said that was fine. I didn't get any explanation on what would happen if I didn't finish. Or if I should start another type of chemo. The nurses were amazing. AMAZING. But it hurt me to know that my doctor was in the office knowing I was struggling and did not come for even a minute to check on me. I didn't want you to come out and give me a hug. I just wanted you to come out and be my doctor. When you and I spoke two days ago, you said I had an extremely aggressive form of cancer and that I needed these next three rounds of chemo. And after my reaction today, now you say I can stop. What has changed? Why do I no longer need it - or any other form? Trust me, I'm totally fine with no more treatment - but what does that do to my prognosis?

I want to be an easy patient. And I think I am (aside from the portacath). I have done everything you have asked me to do. All I'm asking for is the straight to the point, no sugar coating, doctor I was referred to who has the open line of communication. I know you are busy. I know you have a lot of patients that are depending on you to save their lives. But I am fighting for me and my family. And I am important. What can I do to help this communication be better? If I am requiring too much attention, please don't be afraid to tell me that I should find another office or doctor. I don't want to do that. The communication with my doctor is equal to the treatment I need to cure this cancer. And I still want the best. And I still believe that is you.

Thank you for taking care of me. Thank you for taking the time to read this. I really do appreciate your efforts in curing me on my family's behalf. It's only been 8 months, and I have years to go and I'm hoping we can get this communication in order so I can beat this thing, and do as you continue to say, not remember this years from now.

Sincerely, Jennifer Johnson>