So my sister called my oncologist, described my symptoms and asked what would be the best thing for us to do. He said to go to an ER to get evaluated especially because I have not had any nausea/vomiting during my chemo treatment so far.
She drove me to St. Mary's ER. I was in so much abdominal pain that I had to rest my forehead on the registration desk counter while I tried to punch in my Social Security number on their keypad. Fortunately, my symptoms ranked pretty high and I got into a ER room fairly quickly. And I was FREEZING! I kept asking for more blankets. I had 8 by the time I left the ER. I was wearing my leather gloves and kept my socks on and would have worn my hat but it wasn't easy to keep on while lying down. They took blood, gave me fluids and pain meds (phentanol - sp?) that were wonderful!!! They also gave me a CT scan. I knew something was up when the tech asked when I last had a CT scan.
I was wheeled back to my ER room. Mind you, my sister sat patiently with me throughout the seven hour ER visit. God Bless her! I waited for results.
Have to mention that the bathroom in St. Mary's ER is NOT a chemo patient-friendly bathroom. It was sooo freaking cold in there that I had to use paper towels to cover the toilet seat so I wouldn't get freezer burn on my butt cheeks. Trying to wash my hands with the automatic faucet that was set to -130 degrees was brutal torture. I did complain about it to the nurse and she said "yeah it's pretty awful." I don't think it's gonna change anytime soon.
When the ER doc came to see me finally with results, he said that I did not have a small bowel obstruction but that it appeared I was working on one. He also asked about the results of earlier scans so I told him about the liver lesion (focal nodular hyperplasia) and the lymphangiomas in my belly fat. He said he saw all that but there were two lymph nodes that concerned him. They were 'inflamed' and located between my small intestine and my left kidney (same side of my body where the tumor in my colon was). I was shell-shocked as you can expect. I gave him my oncologist's number so they could talk. This is a frustrating situation because these two healthcare systems are not linked computer-wise so they can't access my records that SLUH holds. But I refuse to go to SLUH ER because I won't get seen until they get through with all the urban decay that shows up there - gunshot victims, felons on crack, psych patients, car accidents with body parts missing... get the pic? - and I am already on thin ice emotionally. So I go to St. Mary's and I'm seen and I'm not having to deal with the dregs of humanity. (Call me a snob, so what.)
ER doc comes back and says my oncologist thinks those two lymph nodes sound new but he'll see me wednesday when i come for my regular chemo appointment and compare scans then. I was irritated at the apparent lack of concern my oncologist was showing for my situation. ER doc decided to admit me for overnight observation.
One night turned into two nights. I had fever, chills, more fluids, more pain relief. More tests - Xray, blood drawn for cultures, the ever so-humiliating-but-necessary stool 'sample', the list seemed endless.
Colon surgeon stopped by to see me. He said there didn't appear to be anything on my scan that needed his immediate attention but that I was a complicated case and I should see my oncologist as soon as I can. He also said I wasn't doing myself any favors being in their hospital when my treatment team is somewhere else. I lamented that I understood what he was saying but that there was no way I would be able to endure the other ER. He acknowledged my dilemma. The oncologist doc came by to see me and started treating me for an infection. She said I wouldn't really know what was going on with my lymph nodes until after I recovered from the infection and the symptoms vanished. She suggested that I get another CT at that point and compare the two.
I was released on Sunday. It was nice to get home. I still have ab pain but it's not as intense as before and "things" are finally "moving".
My experience at St. Mary's was extremely positive. All the personnel were fabulous and consistent in their compassion and concern for me. They even had a "comfort cart" that came by every two hours asking if you needed a snack or drink. I felt like a person and I felt they listened to me. (Much better than what I experienced during my surgical recovery at SLUH).
But all this has got me thinking about what is best for me. I do know that for my long-term health success I need to feel that my treatment team actually gives a shit about me as a person. I'm considering changing my oncologist and where I take my chemo. I don't want to feel like I'm on the chemo conveyor belt anymore. I want to be a person, not a number, a chemo unit or an account receivable.
I shared my frustrations with my current oncologist in an email today because I know that tomorrow I will already be anxious about the chemo and not really able to relate in a professional manner. Something about being a crazy, wigged out woman just doesn't do much for your credibility when addressing lack of care & compassion.
So... wish me luck and strength. I'm at the halfway mark tomorrow (halfway to crazy some might say)... I'm looking for the light at the end of the tunnel. I need it to get brighter!
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