It's been a rough couple of weeks fighting off infections while I've been neutropenic. Things are a little jumbled in here, but a rough idea of what's been going on.
To re-cap, I finished my chemo on Friday, April 20 and despite the fact that we had expected to be there for another 2 weeks or so, they sent me home on Saturday, April 21. I was set up with appointments to come into the clinic MWF for the next 2 weeks to check my blood levels and get transfusions as necessary.
It was also expected that my counts would continue to drop throughout the week, especially my White Blood Cells, which would make me more prone to infection. Because of this, I was told to come to the ER if my fever rose above 100.4
By Wednesday, April 25 at my appointment my PICC line had developed a blister underneath and it continued to be swollen and itchy. They decided in the office that day to remove the PICC line which was about a 5 second process.
Then, on Thursday April 26 I started to feel a little feverish. My temp hovered back and forth between 99 and 100.3 but it never went above 100.4, and I had a clinic appointment the next day, so we didn't go in to the ER. When I got to my appointment I started to feel very cold in the lobby. By the time they took me back to the room to draw my labs and I was freezing. While getting hooked up for my platelet transfusion my fever got up to 100.5, so they decided that I would need to be admitted back to the hospital.
We ended up being admitted to the 10th floor this time. This is mostly bone marrow transplant patients and people with zero immune system. After I was admitted I had fever chills so bad that my body was convulsing. They brought me about 4 or 5 blankets. At the same time my head felt like a tea kettle that was about to whistle. I had so much pressure and heat, so I also had an ice pack on my head. By the time my fever broke my temperature had gotten up to 104 degrees.
They started me on 2 types of broad spectrum antibiotics and drew blood cultures. They drew 2 different samples, one from my port and one from my wrist to test for different bacteria. It ended up that my port sample tested positive for Ecoli and the wrist sample for Vancomycin Resistant Enterococci (VRE). Unfortunately, Vancomycin was one of the antibiotics they had me on and they had to change it to something called Daptomycin instead. The other antibiotic I was on was called Cefapine. They also found that the E-Coli was resistant to the antibiotic Cipro, which was the antibiotic I had been on "preventatively" at home. Because of all these resistances they were unable to narrow it down to a less broad spectrum antibiotic.
While I was there they did several other tests to see if they could determine the source of the infection. I had a CT of my abdomen (which was a dramatic affair in itself due to issues with my port) and an ultrasound of my heart. In the end they decided that the infection was just bacteria that was already in my stomach and somehow entered my blood stream. I also received an ultrasound on both of my arms and it was found that there was a blood clot in my right arm caused by the PICC line. Unfortunately I can't receive treatment for this because of my blood counts, especially my low platelets. I guess the fortunate thing is that it is a "superficial" blood clot, so it poses less risk of breaking free and going to my heart, lungs, or brain. Still scary though, and now I cant get my blood pressure taken or do any blood draws on that arm.
Despite these infections, once my fever was controlled they still felt it would be better for me to be home rather than in the hospital, so on Thursday, May 3 I was sent home in the evening with a plan to continue to receive IV antibiotics at home with a home care nurse. I was only home for a couple hours before I started to get chills and my temperature was at 101 degrees again, so to the ER we went.
We had to go to the ER at the DMC, because Karmanos does not have their own Emergency Room. The ER was not very busy but they still wanted me to take a seat in the waiting area. I told them that I had a neutropenic fever and no white blood cells, and asked instead to be placed in isolation. The doctor on duty called my doctor and they decided to admit me again, even though I didn't have a fever by the time we got to the ER. This time I was re-admitted into floor 8, coincidentally my same room from the first time.
In the emergency room the nurses were having trouble getting my port (which had been left accessed in order to receive the at-home antibiotics) to give blood. Once I was upstairs they were able to get one of the IVDT (chemo) nurses to come up and she just changed a cap on the catheter and it drew blood immediately.
Because of the fact that I got a fever at home but had no fever once I was back at the hospital, they decided I should finish all of my IV antibiotics in the hospital before I could go home.
Early Monday morning my port stopped flushing after the nurse drew my daily blood. Multiple nurses tried to get it to flush or draw blood again and it wouldn't. Eventually they sent me down to Interventional Radiology (IR) to see if they could take some images and see what was wrong. It turned out that the catheter was flipped and kinked (inside my chest). While viewing the port on an Xray the doctor tried to manipulate my port and flip the catheter the right way, but it was unsuccessful. They sent me back upstairs where I was to get a regular IV in order to finish my course of antibiotics.
Unfortunately they were unable to find any viable veins for an IV. So the doctors came in to talk to me and said that IR could use an ultrasound to put in something called a mid-line. This was explained to me as being something that was more like a regular IV but would look like a PICC line from the outside. I agreed to get the procedure done, but now I have regrets.
The process for placing the mid-line was exactly identical to the pICC line. Except that the midline has less functionality than the picc line and had to be removed before I could be discharged from the hospital tuesday night. They also had to make 2 attempts at placing the mid-line because my veins are so small and hard to get even while under ultrasound. Now, my left arm is swollen and itchy, just like the right arm was. I am terrified that i have another blood clot. I also now have no real way to draw blood or start an IV, as my right arm is unusable (blood clot), my port is not working, and both my picc line and my mid line were taken out. My left arm is still usable now (unless it's determined I have a blood clot) but most of my veins are already blown out.
Due to all of this, I have a very real fear that I won't be able to receive treatments that I vitally need throughout the rest of this process. Basically I'm afraid that my broken port and my crappy veins are going to kill me. If I get another infection and can't get antibiotics, or if I need more chemo and it has to be delayed until my port can be changed. Can my port even be changed with my counts so low? What are the risks? Could that procedure result in my death? Having cancer is scary. Having 2 types of cancer is scarier. But realizing that even if your treatments are effective some other part of the treatment plan can kill you, unrelated to the actual cancer, is terrifying. I'm now constantly thinking of my blood clot breaking lose and having a heart attack or stroke. Or of having an infection that takes over my entire body and I can't fight it off because I have all these resistances to antibiotics, or because they can't even administer the antibiotics because of my veins being so shriveled. It's a constant thought that I can't let go of. Just had to get all of that off of my chest.
Anyway, tomorrow we are headed to Ann Arbor bright and early to meet a doctor there and see if I want to transfer my care to their facilities. It will be kind of a pain because it is a further drive, but if I can receive better care it will be worth it.
Huge thanks to everyone for your texts/calls/messages of support during these past couple of weeks. For all the donations to the Go Fund Me or PayPal, or purchases from our Amazon Wish List.
Love everyone!
