2023....What a Year!

As previously noted, I wasn't feeling great at the end of 2022. Mostly I felt lethargic. I just felt ick and under the weather. I could not put my finger on what was wrong but I knew something was off. The pain in my arm was something I had not felt before. By Tuesday (1/02), I did not feel well enough to work so I knew after not improving for five days, I should reach out to my oncologist to see if he thought my port was having an issue and thus the new adventure began...

January 4, 2023: Mom and I got up early and drove to Mayo so I could be seen in the Acute Care Clinic. We had never been to this part of Mayo before. It turns out, this was set up a year ago for oncology patients who were having issues. When I got there, they hooked me up for fluids and took six vials of blood from the port as well as blood from each wrist. Yes, I said wrist. It is very challenging finding good veins to retrieve blood from me and lately the wrist seems to be the best place. They had to take blood from three locations to run blood cultures. Additionally, they gave me a nose swab and did a urinalysis. They ran an IV antibiotic. I had a reaction to the antibiotic but it went away quickly and felt we were headed in the right direction. As results started coming in, it was discovered I had an UTI, which is interesting because I had no symptoms but craved cranberry juice the week before. The nasal swab tested for 19 diseases, I had none: no COVID, no flu, no RSV, no pneumonia, etc. The last test to run was a CT scan to look for inflammation and disease. I had a CT scheduled for the following Thursday so we decided to move this up because the PA did not feel that it could wait. It was about 2 PM at this point. We were waiting on the insurance company to approve moving the scan. This didn't make a lot of sense to me because they had already approved the scan and we were just moving the date but we waited. And waited. And waited. By 5 PM, we decided to pick up my antibiotic from the Mayo Pharmacy (in a different building) and go home. We were hopeful it was just the UTI making me feel so lethargic. We went to the other building, got my prescription, and went back to the car. As we were starting the car, the PA called to say the insurance company finally approved my scan and they could get me in at 7 PM. We decided to stay and get the scan. We finished at about 8 PM and then had to decide - go home or stay the night. Ultimately, we decided to go home so we could sleep in the next morning and rest. We got home around 11:15 PM.

January 5, 2023: First thing in the morning, I got a call that said that I had a blood infection. It grew pretty quickly. Mom and I got back in the car and headed to Mayo. In retrospect, the signs were telling us clearly to stay but we were not paying attention. We arrived at the clinic so they could admit me. They ran an antibiotic and fluids while we waited for my room to get ready. Transport came and got me, which meant I got to ride in the tiny on-campus ambulance. They took me in through the ER, which was busting at the seams - 44 patients for 24 beds. We went up to the floor and they decided to change my room number. After about 15 minutes waiting in the hallway, they decided to put me in the original room they assigned me. Once I got checked in, they put in an IV in my arm because they said we could not use the port due to the infection. They started another round of antibiotics again. 

January 6, 2023: They scheduled a cardio ultrasound to see if the infection impacted my heart. An infectious disease doctor was called in to meet with me. After meeting with me and reviewing all of my tests, they were able to determine the type of bacteria that caused my blood infection. Apparently, it is a very common bacteria we all have on us but unfortunately, it got inside of my blood. The port was scheduled to be removed so it did not become a source of additional infection. I was very sad to lose the port. This means no more hydration therapy. It means my three month checkups will include the hunt for a good vein for blood draws and contrast for CT scans. We waited all day for the port removal. At about 5 PM, two people came to take me down for the procedure. They were funny and we talked how the best part of the hospital is the warm blankets. One of the guys told me they had good robes too. I had no idea. While I was gone, he brought me a robe to my room. The team of guys in the procedures were very funny. We talked about movies and TV. The doctor was very good. The worst part was the lidocaine shot. Once I was numb, the doctor proceeded with removing the port. He said the port was clean as was the pocket the port sat in. I figured the port was not infected because it did not hurt nor was showing signs of infection. I was happy to see it was not the source of the infection. It still had to come out because when there is a blood infection they remove foreign objects in the body to avoid places for the bacteria to hang out and make things worse.

January 7, 2023: The entire infectious team came to meet with us....they filled the room, it made me feel like I was patient zero. They think the bacteria entered through my port but were not sure how long it had actually been in there. We asked about the risk to mom and the doctors said none. However, once they left, my room was tagged isolation and anyone who came into my room had to gown up and dietary wasn't allowed to bring in my tray. I was put on ten days of IV antibiotics plus three days of a different antibiotic for the UTI. The plan was to leave the hospital with a midline so I could continue IV antibiotics at home, which made me happy because being in the hospital was not restful. I was on a bed alarm, which meant anytime I had to go to the bathroom, I had to call someone. They waited outside the door for me. They woke me up throughout the night for vitals. Finally, Saturday night my nurse asked the doctor if they could stop waking me up. 

January 8, 2023: Mom and I hung out all day. They scheduled my midline to be put in during the afternoon but they never came to get me. The nurse said she didn't know why they didn't come nor why they canceled the procedure. This was standing between me and going home so we were ready to have it put in. They did turn my bed alarm off for the day, which was a win.

January 9, 2023: The doctors changed so I started with a new doctor this morning. He told me that they would put the midline and then I could go home. We were due to go to Mayo this week for my three month checkup, a meeting with palliative care, and an echo that my pulmonologist order. I emailed my pulmonologist to see if the echo in the hospital could be used. He said yes but he wanted me to see cardiology because there was one finding he wanted a consultation on. Overall, my heart is in good shape so hopefully this is just nothing. My oncologist agreed to switch my appointment to telemed. I called palliative care to reschedule my appointment and she told me to have the doctor have the person come see me in the hospital. That turned out to be all sorts of bad advice because it opened up a whole can of worms of misunderstanding. I will just reschedule that appointment for a later day. We waited all day. At about 5 PM the VAT (Vascular Access Team) team came. I told them I had given up on them. They said the doctor put in I was going home on Tuesday so they did not prioritize my PICC line in. I told them I thought I was getting a midline. They had talked about both. A PICC line is more invasive. Both would be usable for the IV antibiotics. Ultimately, they talked to the doctor and went with the original plan of a midline. The women on the VAT team were great. My line was put in. Mom and I talked it over and decided it would be best for me to stay one more night so I could get my 10 PM and 6 AM meds. I told the nurse to let the doctor know I needed to be discharged by 9:30 AM so I could meet home health care to get my 2 PM antibiotics. The doctor came in to see me and he agreed that I could go home that early. He was concerned about my high heart rate. I explained that is just me and I would be seeing cardiology in March. They allowed me to have the bed alarm turned off for the night so that was a win!

January 10, 2023: The doctor did come to see me early in the morning. Mom and I were able to get on the road by 10 AM. We made it home by 1:30 PM. My meds and home health care showed up around 2:45 PM, which got me just in the one-hour window to get my 2 PM antibiotics. My nurse showed me how to do the meds. She explained that she will come on Tuesday to do blood work so we could determine if I can come off antibiotics. I will meet with the infectious disease control doctor on Wednesday via telemedicine. Hopefully, I will get the sign off to end antibiotics on January 20 and have the midline removed the following day.

The cats are so happy to have me home and I am happy too. I have spent this past week sleeping and working and then sleeping some more. It is amazing how tired I still am. The last doctor I saw told me studies show for every day in the hospital, it takes one week to recover. I am trying to be patient but I am tired of losing time to being sick. I have so many goals to accomplish and sleeping does not achieve them. That being said, I am giving in to self-care, realizing it is the only way to get better!

One a good note, the scans show my cancer is still stable! The nodule in my lung from the last scan seems to be resolved. There is a new very small lesion on my liver that we are watching but the doctors are not concerned with it right now. We will see what the next appointment shows. 

For tonight . . . I'm just sayin' XOXO