Cytarabine then bacteremia, but home now

It’s been a busy two weeks since I’ve left Swedish, two Saturdays ago the 5^th, I checked into the UW hospital to get a Hickman central line catheter installed in my chest in preparation for chemotherapy. I had a Hickman installed back in the 2012. A Hickman means no swimming, and showering is annoying because it needs to be covered w/ plastic wrap.  But it also means I can get chemo through it and no more arm sticks for blood draws. I had two rounds of Cytarabine in the hospital. Dr. Shustov wanted to knock back the systemic leukemia, but not eliminate it, because the CAR-T cells will need something to attack, latch, and multiply. Dr. Shustov said he ordered a ¼ of the amount of cytarabine that he would give for standard ALL-treatment. It was nice because I didn’t feel too sick or nauseated after receiving the drug, but it was still strong enough to knock my counts back for two weeks. Following the Cytarabine, I went home for three days, and then back to the clinic for an Ommaya tap and chemo administration. On Friday, the 11^th, I woke and noticed a little bit of blood oozing out the side of my Hickman site. I am supposed to change the dressing if it gets soiled at any point.  But I had an appointment the next morning for platelets at the SCCA. I then had the dilemma of personal healthcare. Do I go in now when its inconvenient or do I wait it out and risk infection or whatever other bad stuff could happen (without knowing how risky or bad this stuff would actually be). To complicate the issue, Briana was out of town as a bridesmaid in her college roomates wedding, so I was on Alpen duty with Briana’s mom, Peggy.  I decided the responsible thing is to call—and my nurse did say to come in—so I said sayonara to my Friday afternoon and piled into the car with Alpen and Peggy. Once I the results came back from blood draw, we were surprised to see a low neutrophil count and a low platelet count. For the platelets, the team wanted to infuse that evening to be on safe side. Heading their judgement, I thought that’s fine, traffic will be bad anyways to get home right now. Following the dressing change, I headed up an infusion bay to receive a bag of platelets. Before getting blood products, you always take temperature and blood pressure as a baseline, and then again after you have received a lil bit of product to make sure the body isn’t posing a reaction to foreign blood products. However, in this case, my baseline temp was in feverish zone, so we went with an armpit temp that was more reasonable. My nurse blamed it on the oatmeal I just ate that probably heated my mouth up. But I had a bad feeling—I’d been feeling off that afternoon. Not wanting to cause too much of a stir, we marched onwards into the bag. Two-thirds of the way through the bag, I got up to use the restroom and couldn’t stop shaking from chills. We stopped the platelets, and took some more temps. One registered as 103F which was more than enough to count this as a full-blown neutropenic fever which meant full work-up and blood cultures. Now we were confused whether it was a response to the platelets or an infection. If it didn’t go down, the doctor advised to spend the night in the hospital so I could be monitored more closely. I felt guilty at point for needing to bail on my weekend responsibilities for Alpen. But that’s just the reality of our situation right now. Thankfully Peggy was here to pick-up the slack, take him home, and care for him the rest of the weekend. My dad came down from Edmonds to drive me over to the UW hospital, where I checked-in around 9pm, missing ordering dinner by thirty minutes, which meant chicken-noodle soup from the floor—which is OK, but it’s no evergreen salad w/ grilled chicken. I had a feverish night of poor sleep and nurses coming in to check vitals, seemingly continually. In the morning, I learned a culture came back positive for bacteria in my bloodstream: rod, gram negative. We started IV broad-spectrum antibiotics right away and then waited for the more specific sensitivities to come back. I continued to feel better as time went on, and posted my last fever on Saturday night. I got out Wednesday the 16^th, but went home with a 10-day supply of IV levofloxacin antibiotics and training on how to do home-infusions. I’m still infusing nightly for 1.5 hours, which is annoying. It turns out I really don’t like the pressure of dealing with sterile parts and cleaning my line—but I’m happy I can do it at home and not have to go into the clinic every day. I’m also happy that I’m not a nurse that has to deal with other people’s central lines.  

My platelets were still low when I was discharged, and were hanging-out below 10k my last couple days in the hospital, so I went to the SCCA the day after I was discharged to receive platelets, in addition to my scheduled Ommaya chemo. We also decided to try to improve the platelets by administering IVIG or intravenous immunoglobulin, essentially a bag of donor antibodies (pooled from over 1000 people) that works by overwhelming my system so that platelets don’t get killed off as quickly. It’s an effective way to treat autoimmune disorders and it has given me a substantial platelet boost for up to a week in the past. The downside is it takes two 5-hour infusions; and that is how I spent Friday and Saturday mornings. But my mom came back from Iceland on Friday night, so I was able to catch-up with her on Saturday morning about the trip. Jonathan rode his bike down to join us for infusion fun as well. The IVIG should carry me through the period of the stunned marrow following the Cytarabine, until production increases. It will also mean that platelet bags should give me more of a bump if I were to need any more bags.  

Alpen's first adventure to Puget Sound (at Golden Gardens),
he couldn't get enough of that salty breeze

Monday was Briana’s first day back at work (she is starting back at half-time). It marked a new phase of the summer. I stayed home with Alpen until I had to leave for an appointment at the SCCA, when my mom took over. My parents arrived together, my dad drove me to the SCCA, while my mom stayed at the house and watched Alpen. My parents have been essential caregivers throughout this illness, and continue to be so this time around. Going forward I have more Ommaya chemo on Thursday, and then meet the CAR-T cell team early next week.  Today was the first day in 12 days that I didn't have to go in to the SCCA or be in the hospital. So cheers to that!