14 June 2023
I’m ecstatic today! I had the first solid stool in at least six days! Take your victories where you can get them.
As you know, I’ve been absent on the blog for a few days. I was scheduled to go into the oncology unit for some type of infusion and magnesium treatment on the 12th. I didn’t make it. I waited until 6 am and called Joel and told him there was a change in plans; I wanted to go to the emergency room at Holy Cross. We arrived a little after 7 am.
Dr. Vega pretty much saw me immediately since there was only one other person in the ER when I got there. He asked pertinent questions and two nurses: Victoria and Christina took very good care of me. I listed my symptoms for Dr. Vega which included diarrhea to the point of every five minutes the last few hours. They immediately ordered blood work, a chest x-ray, and an EKG. The EKG came back abnormal with a left axis deviation which means the electrical conduction is not normal. They promptly admitted me to the fifth floor for observation. My troponin level was high and that indicated I might have had a heart attack. Fortunately, a retest later indicated the level had dropped.
Before they took me up, two women associated with the oncology center popped in. They were making rounds and saw my name on the ER list. They were a little astounded that (1) I had no idea as to what the scheduled infusion for that day meant (2) that I had tried to call and cancel and had been cut off or hung up on (3) and that I was upset with the hematology oncologist. I wasn’t very pleasant to them and before you get upset, I did apologize to one and asked her to forward my apology to her colleague two days later.
From there, the results of the blood test indicated some obvious signs of chemotherapy (high white blood cell count, high monocyte count) but also indicated acute kidney injury (probably due to the dehydration from diarrhea) with low sodium and magnesium levels. They began to give me an IV with saline, magnesium, and also zorfran for nausea and Imodium for the diarrhea. I was a sick puppy.
My nurse was Edwin and he took very good care of me. I had a private room with bath. Within 30 minutes, two physicians had been to see me. One was actually an oncologist making rounds from the Biennes Oncology Center.
The rest of that day was spent either being poked, prodded, injected, or in the bathroom with nausea and diarrhea. I had my first ever injection of insulin. I had not brought my medications with me and they would not give me metformin for my diabetes (high levels of metformin can cause diarrhea). My sugar was really wacko. I think it one time jumped to 167. My blood pressure was very low. At one time it was 111 over 57. The systolic was as low as 99 at one time.
They did stool samples (poor nurse) and put a heart monitor on me. Later, one of the oncology representatives mentioned my stool was the talk of the floor for its nastiness.
Since it was Monday, I managed to call Kathy, the Nurse Navigator at the Biennes Oncology Center and explain what happened and that I was definitely not happy. I asked about all the extra infusion dates and eventually she told me I didn’t have to attend any of those if I felt they were not needed – the hematology/oncology department never mentioned this. I explained the difficulty I had contacting the Biennes Oncology Center over the weekend. When ever I called a number, it would tell you “press 1 if… press 2 if…. When I pressed any number, it either hung up on me or kept rattling off numbers and then hanging up. Their all-hour number seemed to not work either. They had just changed to a new phone system and were a little taken aback that I couldn’t reach them.
I also informed her I was not happy with my current hematologist/oncologist and wanted to change. We discussed options and we are still working to see if two of the four on staff will be willing to take my case. I told her under no circumstances did I wish to talk with my current one. I asked her to consult with Dr. Burgers to see if surgery first and chemo second was still an option.
Later Carrie, the Clinical Nurse Manager called and tried to mollify me. She was also stunned about the phone system. I also strongly indicated that I did not want to talk to the hematology oncologist. Can you see where this is heading?
I told both Kathy and Carrie I thought it interesting that after my first chemo on June 5th where they were constantly concerned about my reactions to the drugs that no one thought it necessary to call the patient during the week or weekend to see how they were fairing. Both thought this was something that wasn’t done. I didn’t mention that the oncology surgeon and the one who performed my biopsy, while at a conference, called me and spoke with me for over 30 minutes reporting the results of the biopsy and talking me through issues, all on her time.
Sure enough, while Edwin was putting up a new IV bag and magnesium bag, guess who walks into my room? He was trying to apologize but just could not get the words out. He explained that the infusion scheduled for today was simply to check for dehydration (I had eventually figured that out). I then pointed out that would have been nice to know before their app asked me to fill out a questionnaire and then directed me to scheduled visits where he had assigned me 52 visits and his nurse had added 66 more for a total of 118 – on top of the original 14 chemo infusions. None of this was ever mentioned to me.
His response was he didn’t do that, that was the fault of his staff. I have never met anyone yet in any position of responsibility that will automatically allow staff to do anything without their approval first. He was already in dangerous waters at the time and then he jumped into the deep end. He then asked me if I knew the definition of infusion.
I not so politely informed him I had two masters degrees and 42 hours toward a PhD in microbiology and I certainly did know the definition of infusion. It also has a context associated. Is it an herbal infusion, chemo infusion, and infusion of pride? He asked repeatedly if I would meet with him and I repeatedly told him no, I was not going to ever see him again. I finally had to ask him to leave. I later apologized to Edwin for my behavior and that he had to be exposed to that scene.
What was really strange was that representatives of oncology kept appearing on my floor. In reality, the physician in charge of my case at the hospital didn’t sign me out – it was the oncology representative. It’s like the oncology group hold sway over the entire hospital.
To make a long story longer, the diagnosis was the chemo led to diarrhea which lead to kidney damage, which led to my hospitalization. I’m on prescription Imodium, and prescription anti-nausea drugs, and can maintain my current diet sans fresh fruit and vegetables. I’m still in negotiation with the Biennes Center for a new hemology oncologist. Biennes is checking into their phone system and I have an appointment for the second chemo infusion on June 29th.
I ordered from Publix today (ugh!) but they at least had what I needed. It’s quite a search to find something I will eat. I bought cereal and oatmeal and some frozen protein. The delivery guy got out of his car reeking of weed and even the grocery bags smelled up my house. Maybe that’s what I need for the nausea.
When Joel dropped me home, I immediately took a shower – my first in three days. I noticed that my nose was rough to the touch and then noticed I can add another side effect to chemotherapy.
I decided what I needed was some soothing lotion. I grabbed my trusty Nivea bottle and added it then and once later in the night. Later that morning, I realized I had rubbed shower gel all over my face, not body lotion. I corrected my error later that morning.
I went to bed last night at 6:30 pm, got up at 2:30 am, had breakfast, and went back to bed at 3:30 and slept until 8:30. I suspect it’ll take me a couple of days to get my routine back.
A word about Holy Cross. I’ve mentioned before that Holy Cross and Hollywood Memorial on Johnson Street are the best hospitals in the area. Holy Cross’ emergency room is great. My private room was great and the nursing staff were outstanding. At Holy Cross, you are provided a menu of meals and you call down to get your meal. If you don’t call, they call you. They enter your name in the computer and it tells the your assigned diet: low carb, low fiber, vegetarian, etc. If you order something that goes over your assigned number of grams, you order something else that puts you back in line. They bring you the tray almost immediately. That’s service. It’s hospital food but I will say it is a cut above average.
I’ve taken people to ER’s before but only once before for me. Holy Cross’ ER is a level 2 trauma center but I think it could easily make level 1. I suspect they are not interested in becoming a level 1.
Check out was easy. From the time the oncology doctor released me to my being wheeled down was probably 15 minutes. Yuri, my nurse, brought me the paper work and I didn’t have to sign anything. The wheel chair was brought within minutes. Everyone at Holy Cross, including the lowest paid staff would say hello to you, ask how you are doing, and wish you well. That’s how hospitals should be run.
I’ll be honest and say that periodically I tear up around people these days. It’s not about the cancer diagnosis. That doesn’t bother me. What makes me tear up is how everyone has jumped in to help me in every way possible from bringing me food, shopping for me, carrying me to and from appointments, and checking on me daily or weekly. I truly have some great friends. Much of my life I have felt as though no one cared about me. I have been disabused of that notion now.
Speaking of friends, Jim and Holley just returned from their European vacation and when they knew I had been admitted to the hospital, they dropped by (I can imagine they were still jet lagged). They brought gifts.
Stay tuned!
