After the Tylenol, fluids, and starting me on antibiotics, I felt much improved and they moved me up to my room on the 10th floor at a reasonable hour, and when they checked my vitals again my temperature was back down to normal and I felt better than I had all day. My sister and my dad retrieved my belongings from the car, helped me settle in, and then I had a calm, quiet night. Sigh of relief!
Unfortunately, I woke up for early morning vitals feeling hot and uncomfortable – yup the fever was back and up to 103. Ugh. More tylenol and antibiotics and I felt a bit better, but then another bout of rigors set in and oh man was this one bad. Teeth literally chattering and body shaking, I tensed up hard core into a tight fetal position and could not unlock my arms even to take my blood pressure properly, nor could I loosen my hip flexors to straighten my legs. Breathing was labored and my chest hurt. My heart rate was extremely high. They gave me hot pads and Ativan and the rigors eventually subsided, but the episode lasted a good half hour and really took it out of me. I napped, which I never do. That afternoon, I felt fabulous. Go figure. Chemo would obviously be delayed until the cultures came back negative and I was confirmed in the clear. Sunday looked good. At that point I thought I was out of the woods and on the mend… sadly not my reality.
Apparently fevers often return in the evening, and so this one did. Based on the initial results, they informed me that I had E. Coli in my blood, which had likely leaked out from my weakened intenstinal walls – a common side effect from chemo as it kills the cells of the lining of the GI tract, which grow rapidly like hair follicles do, so can cause digestive issues. I was aware of this potential side effect, but so far no digestive issues. And wait. Back up…. E. Coli!? In my blood?? What. So foul. So disgusting. I had no vomiting or ‘loose stools’ but all signs so far pointed to this explanation…? Um, ok. Gross.
For two days I sat here in the hospital, feeling like I had failed in keeping up my nutrition and managing the side effects. I recounted all the ways I had slacked recently – an ice cream (not vegan) when I was down the shore, a glass of red wine to celebrate my scan results, vegan ice cream, chocolate… more sugar than I had previously allowed myself to consume… fewer vegetable juices. I had forgotten my priobiotics a few days, and had altogether neglected the GI protect supplement my nutritionist recommended… specifically to counter this.
And then I recalled all the stress I had experienced in getting my Lupron shot. SO much stress last week… that most certainly didn’t help my immune system in the face of infection, and I kicked myself for allowing the stress to take over as much as it had. Frustration had lead to tears several times within the week leading up to the fever. I cannot allow that to happen again. Getting the Lupron – which helps suppress my cycles and is potentially protective against infertility, and which I had technically needed the week before since it had been well over 5 weeks since the first one-month dose – was literally a nightmare, and I was supposed to get the shot from my reproductive doctor before being admitted on Friday. But then I was stuck in the hospital, so that was a whole thing, but the good news on Friday was that I got the injected (thanks to a special delivery by my reproductive nurse!) and am covered for the remainder of treatment. Phew!
So this bacterial infection in my blood caused another fever Friday night, about 101, but it broke as I slept and both my 2am and 5:30am vitals checks came back with normal temperatures. I woke up at one point with my clothes completely soaked through with sweat, and I had to call the nurse to unhook me from my fluids to pull the shirt off completely. I switched pillows and pulled the sheets over and slept deeply for the rest of the night.
All day Saturday I felt wiped, but no fever. My temperature may have been fine but my blood pressure was reading low, so even without the fever they hooked me up to bag after bag of fluids and I felt incredibly bloated. I also felt tingling in the tips of my fingers – neuropathy. Chemo can cause this, and it often resolves once treatment is completed, but in some cases it never really does… Terrifying. Otherwise things seemed to be ok. Maybe now I was in the clear…
But no. My blood work that morning came back with very low hemoglobin levels: anything under 7.5 they order a blood transfusion. Mine were 7.4. So they ordered one for me. Wonderful. Before going through with the transfusion, I asked them to redraw my blood. Sure enough, it came back 8.0 – in the clear for the day. Narrow escape. In the meantime, blood work from my PICC continued to read positive in the cultures, so I was still playing the waiting game. Early that evening, after spending virtually all day in bed with a minor tension headache, my discomfort increased a tad and sure enough I had a low grade fever – about 100 – not high enough to give me Tylenol however. Strict hospital protocols. By midnight vitals, the fever was again gone…. thank goodness for that but ugh fever quit playing games!
Sunday – Father’s Day – was off to a much better start. I woke up feeling refreshed, my temperature remained normal, they took me off fluids so I was free from the IV, I took a very long hot shower, and my hemoglobin levels were stable (though still on the low side). So the fever was still gone. Things were looking good. We were just waiting on a clear culture. Early morning lab results return and the verdict is in: NOPE. Cultures from my PICC were still positive. No Chemo. But also, after all that (more specifics I will not include here for the sake of privacy and decorum), NO E. Coli! Turns out it was infection from my PICC that whole time – some environmental bacteria that got lodged in the line and would continue to give positive readings and potential infections. They had to pull it. And it was out in a matter of seconds. Bad news – I needed a new PICC. Good news – mystery solved! And it wasn’t the filthy explanation they’d originally provided. My diet was not to blame. The BEST news – they would let me escape into the fresh air and sunshine for a few hours!!! Best Father’s Day gift! If things had to be delayed, at least I didn’t have to spend yet another holiday trapped in the hospital. Silver linings.
I didn’t have much in the way of nice clothes or jewelry (unfortunately I got word of my freedom after my dad had left), but I did my makeup and put myself together like a normal human as best I could. We walked to the Meatball Shop, and though I ate mostly veg – huge sides of spinach and broccoli, all of the grape tomatoes in my sister’s risotto, and a veggie ball – I did order a beef meatball. Yup. After over 8 years of being a vegetarian, I’m back on the meat, as per my nutritionist’s recommendation. In moderation, of course.
Sammy, my parents’ highly anxious, diabetic and nearly-blind poodle, accompanied my father into the city, so we picked him up from my sister’s apartment and went for a walk then sat outside in the fresh New York City air… .by the river it’s actually not too bad! I soaked up all the sun I could, thinking I would get started on chemo the following day. The anxious little pup didn’t last too long so we said goodbye and Leanna and I got Fro-Yo. Because I deserved it.
Monday. PICC is out. But cultures take a while, so we had to wait on that morning’s cultures to confirm I was in the clear. So guess what? Still no PICC, still no chemo. The waiting game continued, but they took pity on me and allowed me to escape again, as long as I was back at 2pm for my 30 minute antibiotic infusion, I was otherwise free to frolic around the neighborhood. I was free from my ball and chain. No, I couldn’t go far, but I can’t tell you how liberating it was to simply walk around outside, by myself, wander into stores to browse of my own volition, try on sunglasses (I’d forgotten mine) and hats, and eat wherever I chose. After my antibiotics I went back out to get organic berries, a green juice, and simply sit outside. Extended hospital stays provide a harsh reminder of the simple pleasures of freedom and volition – freedom of what to eat, when to eat, or even which route to take on your way to the local store. And the simple freedom of fresh air.
Tuesday is the day – finally. They put in the order for me to get my new PICC first thing, and Keith promptly came in to set up my bed for the mini procedure. Between the ultrasound and minor discomfort of pricks and local anesthesia, we talked math and Boston College sports. Aside from a sudden sensation of warmth (blood gushing out as they inserted the line… good thing I wasn’t watching), the procedure was short and painless, and finally, soon thereafter, they hooked me up to my immunotherapy, and as soon as that was done, the chemo was finally underway. Saturday release on track. Oh but there was another minor hiccup that morning – without the PICC they had to stick me twice – once in each arm – and take a lot of blood. And then the labs came back ‘wacky’ according to my doctors. So after the PICC was inserted, they had to draw them all over again. The morning discomfort was for nothing. And after all the blood taken that day, I was wiped once again.
My hemoglobin stayed quite low, but my blood pressure has stabilized and even improved. Because guess what – it matters which cuff they use! If they use a cuff that is too large, your blood pressure reading will be lower. My blood pressure does tend to be lower, however some aides and nurses were using the adult size cuff, which starts at a circumference of 27.5cm. My upper arm is 25cm, confirmed when they did the PICC prep, so I need the small adult cuff, and it makes all the difference. Healthy BPs depend on it!
So what else. I have officially experience loss of appetite/ minor nausea… last night I could hardly keep down the cup of applesauce I had for dinner. But keep it down I did. And today, Fri-yay, I had pizza for lunch, and in spite of my odd lack of appetite, it tasted delicious. The pizza was half-decent and I had two slices. There goes my gluten-free, dairy-free attempt once again…. but at a certain point you just gotta eat something, whatever tastes good. Yesterday it was veggie sushi and miso soup for lunch that kept my stomach satisfied and settled.
Oh and one more thing: I needed that blood transfusion after all. My hemoglobin levels were 7.5 this morning – exactly borderline – and they didn’t want to send me home at risk of further drops. This terrified me slightly, but they promised the blood was good. I asked them to cover the bag with purple tissue paper. And I tried not to look at the line. It’s done. I feel good. One nurse was surprised I’d made it to the end of round 3 before needing a transfusion… I guess, in spite of all the hiccups and set-backs this week, I’m still doing pretty well! And for the record, I’ve not experienced any tingling in my fingers/ neuropathy for several days… so who knows. Fingers crossed.
Let’s see what tonight brings… but one thing is for sure: tomorrow morning brings freedom!!!! Just in time for a beautiful weekend. So excited and so grateful.
Hoping those are the last hiccups! Enjoy your freedom and the sunshine! Stay well and strong for next week!
You’re halfway there!
We admire your courage, Amanda, and wish you continued progress. All the best!
First of all you are a phenomenal writer, 2nd I keep you in my daily prayers. You are an incredible example of strength, wisdom and hope.
Keep writing. I will keep praying
3 Comments on When Things Go Wrong Part 2: Infection in my PICC