Temporary

HEALTH UPDATE: It seems like it’s been I while. I can’t remember where I’ve left off. Since my first immunotherapy treatment on March 13th, my fevers have continued, higher and almost always all day long, along with severe fatigue, lack of appetite and GI issues. On Tuesday this week my temperature reached 102.1 overnight. It was decided by my oncologist that I should be tested for the coronavirus to rule it out. I got an appointment for the test Wednesday midday and results would take 3-5 days. Wednesday afternoon my temperature was 102.7. Too high. It was time for another visit to the ER. All the tests were negative except for one! I have a “germ” in my colon. My poor colon. It’s been through the ringer. They sent me home yesterday with a new antibiotic and hopefully I will be better soon. Sitting up to type this was not possible a few days ago so there is progress already.

Ramblings….

COVID-19! I’ve been excited to share my experience with being tested for covid-19 and also being admitted through the ER during this incredibly difficult time for our country. The first process was the test. To put things in perspective, I do not live in a small town. I live in Madison, WI and my healthcare is through UW Health. I had several screenings on the phone to see if I even could get the test. I started with a number dedicated to COVID-19. They sent me on to my primary doctor who sent me on to a video meeting with a doctor. Everything was organized and streamlined but I’m not sure why you need to go through all these people and explain symptoms over and over. I had to download an app for the video meeting. It was a pain in the butt and many of the options didn’t work but the system was good overall. I barely waited at all for my video meeting and the doctor I spoke with was so nice and caring. That was incredibly welcomed and appreciated. Because I’m high risk and my symptoms, she confirmed I met criteria to have the test. I would receive a call to make an appointment. I received a call Wednesday morning to come on in.

I went to the Urgent Care Clinic on Mineral Point Road in Madison. They are well organized and appear to have set up a waiting and testing area just for the virus. I’m not positive about this new shiny area but I’ve never seen it before and we’ve been there many times. I remember I took Willow when she was around 2 1/2. I thought she swallowed a pumpkin stem. You know, one of those little pumpkin looking gourds? Nope, ear infection. The virus area waiting room was spotless. There was one other patient waiting to get tested. I was called back quickly and the good times rolled. They take a swab and stick it wayyyyy up your nose. No big deal. All done, on my way. I would have my results in 3-5 days. On my way out, the receptionist was wearing gloves and using disinfection wipes to wash my chair that I used in the waiting room!! Impressive!!

I’m sick. I go home and take my position on the couch. Mouth hanging open and just hoping it all goes away. I’m getting the chills. I take Tylenol. I take my temperature first and it is 102.7. Shit. Not good. I call my oncologist. She wrestles with the options. She doesn’t want me exposed in the ER. She knows I need x-rays and labs. She needs to make calls. She calls me back and there isn’t a way to avoid the ER. I’ve already got my bag packed. I know what is coming. I’ve been through this fever business twice before. We load up in the car and away we go. Tom and Willow drop me off and saying good bye is hard but I don’t mind being by myself. It’s boring for visitors. Now it is just plain dangerous with the risk of catching covid-19.

The ER is business as usual. No crowds. No panic. The only differences that I notice are large glass shields attached to the check in desk. It’s like a sneeze guard at a salad bar but bigger and tougher. The nurses all have masks and face guards on. The guards with the big clear plastic shields. I wore one of my little yellow masks. I was upgraded. My oncologist called ahead. The ER was ready for me and I was welcomed with open arms, as usual. Nurses and all Doctors I saw did not seem rushed. Because I had taken the Covid-19 test and results were not yet in, they wore masks, face shields and gowns. Gowns were thrown away after each visit to the room. New gowns for each patient visit. They spent time with me to make sure I was okay and didn’t have questions. They took half my blood transfusion from a few weeks back and used it for tests. I was admitted.

I was taken to a room in an unfamiliar location. “General Internal Medicine”. I think that is code for “sickies that are waiting for covid-19 results”. Just a hunch. Same mask, gown and shield for the nurses. No panic. Service and attention was flawless. Business as usual. I did not sleep well. It was a dark night. My thoughts wandered. Although I was concerned about being positive for coronavirus, I wasn’t shocked about it. Just needed to finish my planning for my funeral that nobody would be able to come to. You know, just in case. I’m weird. It’s so important to me that I’m prepared! I would think I could fight the virus if I got it but these days you never know. High risk is not the group you want to be in but it doesn’t mean the end! Yet, I still want to be prepared. I wonder how many people are scared or freaked out? I feel for you all! I’ve been there! Once again, my prior experience in life has also prepared me for this virus! The unknown. No answers. Wait and see what happens. It has prepared me. I am no stranger to these feelings. They are however, still sometimes impossible to comprehend or understand. They are like constant question marks floating in your head. My best advice is to cherish your surroundings and things that make you happy. The amazing silver lining is this: Take out a wedge of time for YOU. Just you. Only you. I was half awake around 5 Thursday morning when my delightful nurse Sue proudly ripped off her mask (no longer required) and exclaimed, “YOU ARE NEGATIVE FOR COVID-19!!!!”.

I was transferred to another room shortly after that. Much of the same minus the masks and face shields. Another noticeable change. To limit patient contact, Doctors, pharmacy and admissions called me instead of coming to my room! Smart, huh? I was very tired so I napped often. Not before I ordered food. My appetite was back! I had a piece of french toast and two sausage links. I also had some watermelon. The hospitalist was so nice! Young! Energetic and so positive! He said they would like to wait for the results for the outstanding tests and we would go from there. I took a shower and changed my clothes. It felt so good. I’m so tempted to send you a photo of wet bedhead after it dries but you all are going through enough. They popped in with a new medication, explaining that they found something. A Germ. In my colon. Causes the squirts and fevers. I have a new medication, 4 times a day for 10 days. I pray this is the answer to making me well enough to sit up, walk around, do stuff. Even if it’s just in my house! Everything else is good but still waiting for blood cultures. They take some time. It was my time to go home.

This news of going home was different. While I wanted to be home, it was so hard to go home. It’s a lot easier to hide in the hospital. Nobody can see me. My spirits are so much better. I’m good. I’m strong. I’m mostly positive. If the nation can go through this unknown feeling of what will happen, so many experiencing loss and worry, so can I. It is so much easier to be happy on the phone than to look at my face. My body. I look in the mirror and it is different now. I don’t look right. I’m so tired I can’t stand or walk for long. I’m on the couch. I need to stretch my arm behind me to grab a tissue. It can wait. I’m too tired. Oh the dreaded bathroom. Too tired but that cannot wait. The nurses put a fall restriction on my door from their own observations. It was nothing I requested. I wasn’t surprised. The nurse asked if I wanted a ride to the door. Nah, I can walk. No I can’t. Just take the help. Yes, I’m sorry, that would be very kind. You can just drop me off at the pharmacy. Oh no. I need to stand in line. Would you mind waiting for me? The nurse is full service and very kind. Of course I can wait for you to get your prescription. As she rolled me to the door to meet Tom and Willow I broke. Through my tears I mumbled out loud, What has happened to me? Six months ago I was a normal person! Or so I thought. In 6 more months I will be a new person again. I will fight fight fight and not quit. This is temporary. TEMPORARY.

Please be safe. I’m thinking of everyone, sending prayers and love.