Tonight's picture was taken in May of 2002. Mattie was just a month old and all three of us were in a dazed state back then, with no sleep and trying to adjust to Mattie's schedule and needs. Thankfully Mattie was born in the spring, because he responded to fresh air and being outside. It seemed to calm Mattie down and this remained true throughout his life.
Quote of the day: The living owe it to those who no longer can speak to tell their story for them. ~ Czesław Miłosz
Last Tuesday, I went to my urologist for a routine exam. During my routine exam, she stated that she thought one of my pelvic masses was larger. If you haven't been following my story, in a nutshell I was given the scare of a lifetime in February of 2012, when I went for a CT scan to assess my bladder. Instead of bladder issues, the CT results revealed that I had a large mass in my cervix, and better yet the radiologist at the time wrote that it was suggestive of a very aggressive form of cancer. Having just lost Mattie to cancer three years before that, this news sent Peter and me reeling. In 2012-2013, I was literally scanned every month, mainly because the mass is not in a location that can be biopsied to assess if it is cancerous. Each month, was like living hell not knowing whether the mass grew or not or what the next steps would be. Over time, I learned that I have several masses and they are not cancerous. Thankfully. Mind you I am giving you the simple version of this nightmare.
Visions of this nightmare resurfaced last Tuesday for me, when I had a physical exam and my urologist told me she felt a change and suggested I get a follow up scan. Naturally I immediately contacted my oncologist who moved to Baltimore, but who in my opinion is the ONLY VOICE OF REASON throughout my three year ordeal. She told me to take a deep breath and that sometimes there are stable changes. Meaning that even benign things can change shape and grow. But what I like very much about this doctor is I know she is there for me and responds with good counsel and reason. Which helps!
Fast forward to today's nightmare. I decided to have my transvaginal sonogram done at Georgetown Hospital. I chose Georgetown because all of my previous MRI's were done there. In hand with me today, I brought two discs with my previous sonogram results that I had taken at other facilities so that these scans could be compared with today's images. My goal was to house ALL my scans on this pelvic issue in one institution, and I chose Georgetown. However, I am now rethinking that notion. Before Mattie developed cancer, all my care was done at Virginia Hospital Center (VHC) and overall, that tends to be an institution I align with from a professional standpoint. VHC is very customer oriented, staff and healthcare professionals go out of their way to answer questions, to assist patients, and to make the whole facility experience as user friendly as possible. If one needs to be in a hospital, why not be in a place that wants to make it easier for you and respects you?
I went to today's appointment alone. Peter was out of town on a business trip. I was contemplating contacting Linda, Mattie's child life specialist, but I figured at some point I am going to have to manage these scans by myself at Georgetown. Mind you I can deal with them on my own at other hospitals (I don't like them) but at Georgetown it seems ten times worse. I had to get to the Hospital thirty minutes before the scan and fill out paperwork. That was problem number one. I had to wait in the waiting area, this is an area where we waited with Mattie on numerous occasions. Waiting there for a couple of minutes was fine, but as the minutes wore on, my anxiety level started rising and my memories of Mattie in this space rose. Meanwhile, as I was thinking about all of our past experiences swirling in my head, the staff sitting at the desk behind me were talking about all sorts of day to day stuff in their lives and casual conversation. I suppose that is normal, but in my life sitting and waiting for a scan, in an area which reminds me of osteosarcoma.... their normal conversation and laughter were almost irritating. If there were people around me truly wondering whether they were gravely ill, then from their perspective I would have viewed this chatter as absolutely insensitive.
Once the tech came out to get me and walk me back to the sonogram room, I immediately knew there was going to be an issue. The issue was the sonogram room was the same room that I was in when Mattie was given his last sonogram and found that his cancer spread to his stomach and lungs (ie, that his cancer was terminal). I told the tech this by the way and she did not ask me if I was okay remaining in this room or if I needed to go to another room.
The next issue was the tech wanted to just proceed with the exam rather than take a history. This maybe Georgetown's policy, but I have been spoiled by the last two facilities I went to, which both asked for some history and did some talking with me first before jumping into this very personally invasive test. I admit I came into this scan anxious, but the tech's personality and demeanor only fed the fire, rather than helped ease my stress. Once the scan began, she did not talk to me throughout the process, so I had no idea what she was doing (inside of me!) or how long she was going to be. Again, not something I was used to! If all of this wasn't bad enough, the final straw was once the scan was over, she suggested I not get dressed because she had to check with the radiologist to see if more images were necessary. She was also going to have the radiologist upload my scans that I brought in on discs to their hospital system. So I knew I had to wait, but the waiting seemed endless. At least ten minutes. As the minutes wore on, being anxious, I started assuming that something was found on my scan! By the time the tech came in, I literally wanted to bounce off the table in fear. But by that point she said I was set and she was ready to dismiss me and move onto her next patient.
Fine for her, for me, I was a mess. I had questions about when I would get results, and her answer was..... my Georgetown doctor would get results tomorrow. I told her I did not have a Georgetown doctor but I still needed my doctors to get the results before the weekend. Her only response back was.... 'your Georgetown doctor will get the results tomorrow!' As if she did not hear what I just said. I felt like she couldn't wait to deposit me in the medical records library waiting area, until my discs could be retrieved. While I waited there, I asked one of the library people the name of my tech. Since by the way the tech herself NEVER TOLD ME HER name! Once I found out the tech's name, I immediately picked up my phone! I learned that skill from my days with Mattie!
I called the VP of Patient Advocacy. Fortunately Nicole answered the phone and I explained to her what transpired. But while talking to Nicole, everyone else in the Medical Records department also overheard my conversation! They too were mobilizing forces, and the manager of the radiology department came to talk to me as well as the actual radiologist (** Make a NOTE: at any time you go for a scan at any hospital, you can ALWAYS ask to speak to the radiologist!!! That is your patient right!!!) who was reading my scans (my scans look stable, I believe upon initial reading, and will know more soon, but I am thankful to the radiologist at least!). I will spare you more details, other than Nicole was the right person to contact, because she has put me in touch with the head of the radiology department. So I can share my story and concerns with her. But my question is what happens to patients who aren't vocal, who do not know they can speak up and advocate for themselves? No one should have to experience what I did today with such an insensitive tech who clearly maybe competent in her job, but is missing the art of dialoguing and truly listening to her patients. There has to be more to medicine than just the numbers and facts. People are NOT just things and machines. If you don't listen to what we are saying and you aren't reading our emotional signs, you are missing 85% of what is in front of you and I assure you, you ARE doing harm!
I joke all the time about this, but I do think all patients need access to a child life specialist. I certainly could have used Linda today. I know if Linda were with me, things would have gone much better. But Linda can't be everywhere! So how do we affect change??? It seems to me that it is a no brainer.... that some patients come to the hospital with previous cancer experiences and ALL hospital staff and healthcare professionals need to be sensitive, trained, and skilled at knowing how to manage and work with patients like myself.
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