Round 2 of treatments started on July 9 and the last chemotherapy was detached on July 13.
At that point in "a round", I go into a ~2-week state where my numbers drop, I get nauseous for ~5-7 days, then I get mouth sores for ~5-7 days, then my numbers come back and everything is normal for a few days. Then I go into the last leg of the Round for 2 weeks of another chemotherapy that is generally easier for my body to handle.
This time it was a little different...
Everything seemed mostly-normal outside of nausea being a little worse, but still manageable, until the mouth sores came in on July 18-19. They started last Thursday evening, and got bad on Friday morning.
The mouth sores were really bad. The only thing I ate on Friday was about 1.5c of Macaroni & Cheese and a couple spoonfuls of rice around 3:00PM. In order to eat that, I had to take two Vicodin pills about 45 minutes prior so I could bear the pain to chew/swallow.
Aside: "Yes", I have Magic Mouthwash, Nystatin, and the salt/soda rinse. I had been using the rinse religiously since this Round started and started taking the other medications on Thursday morning to prepare for what was obviously coming that day. At this point in the process they are absolutely irrelevant to the level of pain we are talking about. These mouth sores eat Magic Mouthwash for breakfast and wash it down with Nystatin.
These were the "Seal Team Six" of mouth sores.
So, earlier Friday a nurse had come to my house and done a blood draw. Later they called to ensure I knew I was neutropenic and that if a fever rose above 100.4 to just go directly into the ER.
Fun fact! Being "neutropenic" means your "absolute neutrophil count" is less than 1.0...a measurement of a specific part of your white blood cells/immune system. Normally you would have this in ~1.6-8.3 range.
Over the course of the weekend, my level would drop to 0.1 at one point.
After eating and taking a shower, I was feeling a little tired, so I wanted to take a nap. I had temp of 99.6, which had bounced up and down from that (and a little higher) for 1-2 days, so I didn't think anything of it. I took the nap and woke up around 8:00PM with a temp of 102.7. This is kind of a big deal. I hopped in a Lyft (taxi) and went to the University of Minnesota Cancer Research Hospital ER. I was admitted and they started taking blood samples, et cetera.
This is where stuff goes bananas...
So, it's about midnight when I get to my hospital bed from ER and the pain in my mouth is so bad I can't talk. I kind of mumble "yes/no" and then other things that sound like "mnmnnnmmmmnm" to the nurses checking me in. It's awful.
I'm in my room around midnight and honestly begging them to knock me out with something. "I don't care what happens...wake me up on Tuesday...the sores should be gone by then", I said over the course of 30 seconds, one word at a time. I took some Magic Mouthwash & Nystatin to appease the staff and then laid there basically trying to figure out what I could do with my spit other than swallow it for most of the night. They had given me some things to relieve the fever a bit, but, it was still pretty high. At this point, the fever means absolutely nothing to me. The pain in my mouth is the only thing I would care about for the next 48-56 hours.
The next day they started giving me something called "dilaudid"...it's a narcotic used to treat moderate to severe pain. I believe they started off with "up to 0.5mg every 3 hours"...but gave 0.3mg at first for a few rotations. It helped a bit, but not much. I still couldn't talk really. By the end of Saturday I was taking the full 0.5mg every three hours and still in indescribable pain.
That day (Saturday) I experienced the worst pain of my entire life. Prior to this my staph infection was hands down the winner in this category. This was worse pain, more relentless, and unending. I honestly pretty much counted the time between swallows all day. It made getting my thumb taken off in a winch feel like I "bumped my hand hard on the counter"...an irrelevant level of pain compared to what I was dealing with.
On Sunday I woke up and they told me a blood sample had grown a culture. I had a dangerous blood infection called "stenotrophomonas maltophilia". The bacteria could be treated with antibiotics, but a few more details (more time/testing) would be needed to really narrow the ideal one to use. For the time being they would use an antibiotic that generally worked on that strain of bacteria. The Infectious Disease team had been engaged and would talk to me the next morning. The rest of my blood draws would be taken out of good old "vein pokes" several times a day/night and all fluids/antibiotics would be administered the same way but with two more permanent IVs.
The pain of the mouth sores was obvious and they increased my dilaudid dosage allowance to "up to 1mg every 2 hours". I took the full dosage every two hours all day Sunday. By Sunday evening I could kind of talk in sentences. I still had pain, but I could communicate a bit more fluently. On Monday morning around 10:30 I took my last dosage of it, deciding I could handle the pain at that point. Later that afternoon I would start to go through withdrawals, getting headaches and just a general shitty feeling. Part of me felt like I would have taken less of it, had I known this would happen, but the other part of me knew I wouldn't have. I would have let them hit me with a bat 30 hours earlier.
Aside: Oh, I had two blood transfusions to help get my energy, hemoglobin, and other blood numbers (other than white blood cells) back up. I can't remember if these both happened on Sunday or one on Saturday/Sunday. Two bags of blood entered my body over the weekend, I know that.
Monday morning I met with the Infectious Disease representative and a few other doctors...they were all awesome. The exact strain of bacteria and associated antibiotic had been identified and was being treated. The antibiotics that we had been using were fortunately effective as well and cultures from Sunday had come up "clean". We had to remove the Hickman catheter/port in my chest (the tubes), as it had become contaminated and were dangerous to have in my body. This task was completed Monday evening.
On Tuesday things were under control. I hadn't had a fever since sometime on Sunday, two days of blood cultures had been clear of infection, but my mouth sores were a bit more painful than they had been on Monday. Turns out, a strain of herpes had taken hold while my counts were low and that had flared up while it still could. The team verified I had the antibody to combat it and then it was just a matter of waiting for my counts to get high enough for my immune system to do its job. Tuesday was just a bit of pain and waiting, basically.
Oh...I ate around 3:30PM that day for the first time since my arrival on Friday. I had not eaten since consuming around 300 calories (in total) on Friday at 3:00PM. I hadn't consumed any liquid outside of the water it took to swallow pills until Monday night...at which point I had 8oz of apple juice and went to bed. At one point I was down approximately 12 pounds. I finally cracked the code on how to lose weight while going through cancer treatment. I was not thrilled with my findings.
Wednesday I woke up and still had mouth sores, but they were obviously getting better and were bearable. I ate an omelette. Test results for everything were "good" and I checked out around noon to go home.
Now, I'm at home, letting my mouth heal up a bit, which should be taken care of in a day or two.
Some questions answered
"How did you get this infection? Lack of cleanliness? Exposure to sick person/people?"
The mouth sores come in because the chemotherapies I'm receiving reduce the mucus membrane in your mouth, throat, stomach...out to your colon. The entire system is compromised. The doctors are pretty sure that the bacteria was, like many others, in my stomach or GI tract somewhere and the membrane was compromised to the point that the bacteria leaked into my bloodstream and had some fun. Our bodies have these bacteria in them always, but are just normally equipped to use/handle in our system, and defend against them if exposed in an area they should not be (e.g. "your bloodstream").
"So, you have herpes, eh? lolol, omg, does Jenny know?!"
I do...and so do you. Basically everyone has the strain of herpes we're talking about here. Most mothers pass it and the antibodies onto their babies at a very young age. It sounds worse than it is. However, I'd be lying if I said I didn't freak out a little bit when they first told me I had herpes in my mouth. 😉
Without being dramatic, the staff basically saved my life this weekend.
From the Wikipedia page on that bacteria:
Stenotrophomonas infections have been associated with high morbidity and mortality in severely immunocompromised and debilitated individuals.
Every single person there was both caring and professional. Their actions were correct and swift. I could not speak more highly of the treatment I have received to date.
They are angels and I'll never know how to properly thank them.