What is it with 100.4° No matter what cancer doctor you talk to, that’s the magic number. Your temperature hits 100.4° you better get your butt (as well as the rest you) to the hospital. Chemotherapy trashes your immune system and an elevated temperature, even at that level, signals an infection – probably one you’re not going to be able to combat on your own. But 100.4° … I suppose there’s a reason.
Friday, 5:00 pm – 99.6°: I knew a had cold since my Dad has been coughing around for the last few days. I was hoping I wouldn’t get it, but no such luck. Compared to the chemo drugs I was given two years ago, these are supposedly more intense, so I’m suppose to be even more careful. “Stay away from sick,” my doctor said. Easier said than done considering I’m also a caregiver and I can’t control the comings and going of my parents., especially my father. No matter how I gripe there needs to be a change in behavior – it’s naive of me to think it’ll happen. These are my cards and I better just play them the best I can.
Friday, 6:00 pm – 100.0°: Not good. Considering it take an hour plus to get to Billings Clinic, I better start preparing. Drank two glasses of water first, not that I was thirsty, but I felt I should. Make sure the phone and hotspot (remote charger) are charged and my bag with my meds is ready. Nothing else really matter. If I have to spend the next day or two in the hospital then, what I have on, sweat pants and my Vikings jersey ( the draft is coming up) will have to suffice. My dad said he’d drive me, but regardless of my condition I’d rather tough out the drive than worry about him night driving at 89 years old. Just more stuff that figures into the equation … not insignificant stuff though. Made the call to Billings Clinic and now waiting for a call back from whoever is on call in the cancer department.
Friday, 6:30 pm: Got a call back from the doctor. He was a good guy. He didn’t seem worried since it had only been two days my treatment, the white blood cell accelerator shot they gave me (Neulasta) probably hadn’t kicked in yet. “Give it another day or two to boost your immune system.” I took my temperature while on the phone and it was 99.4°. The value of proper hydration cannot be overstated, especially when they fill your veins full of the equivalent of battery acid. Hell, the nurses wear protective outer gear when they set up the infusion. The afternoon nap – with no water, apparently did me in. Lesson well learned.
Friday, 8:30 pm – 99.6°: I’m in bed. This obsession with the thermometer is getting old … necessary, but still old. I’m trying to read, and can’t really comprehend much. My brain isn’t working, plus I’m distracted. All I can think of is the possibility of driving an hour plus to the hospital in the dark with my eyes not being able to focus. The chemo has done a number on my senses. I don’t hear, taste, smell or see like I did. The army of chemo brain simpletons have taken over my very being. But this is the first time brain fog has set in since I started treatment about a month ago. I’ve actually been cerebrally active and very creative. Before this last session earlier this week I thought, “these new drugs aren’t going to be a problem. I’m tough! I’ll just do a Ninja Jedi mind trick on my body.” After all, I’ve always been a big proponent of “mind over matter.” Apparently the simpletons didn’t get the memo. This sucks. This can’t be the new norm for the next five months. More water. I have to fight this. Maybe it’s dehydration.
Saturday 1:00 am – 99.5°: More water. To the bathroom … again. It used to be I wanted to be one with my body – in sync and in control. I don’t want that anymore. It feels like I’m at war with it. The lymphoma gives me headaches, not bad, but there nonetheless. But I still could function with a couple Advil. However the chemo seeks out every corner and function of my body and attacks. Just when I think I’ve countered it, it outflanks me somewhere else … or even in the same place but using different tactics. Normally this time is when I wake with creative abandon, synthesizing new ideas. Now the synthesis is doubt – scary doubt that is undermining my emotional fundamentals. And for some reason laying on left side make this worse. Roll over. More water first though.
Saturday 3:00 am – 99.2°: Coming out a dream feels like an exorcism. It’s not the dream itself so much, as it is just waking up. It’s physically draining. And then the war with the body starts again. The stomach this time. I have to stay away from the anti-nausea pills though. They wreak havoc on my digestive process. Grab a Boost and do the Jedi trick. “Mind over matter” I keep telling myself. Hope I can get back to sleep. My mind is building on the previous negative flow. Why can’t that go the way of the chemo brain and have the simpletons take away the negativity. I couldn’t be so lucky.
Saturday 5:00 am – 98.9°: Walking up the stairs to the bathroom shouldn’t be a major undertaking. But it is. More water. Temperature is better though – a little. Looks like the doctor was right and the white cell stimulator has decided to show up – kind of like the French in the Mel Gibson’s movie, Patriot. Better late than never. I have to get up though. 5:00 AM is the start of my creative time. It’s dark and quiet and when I’m productive I feel I’m a step ahead as the rest of the world when it sleeps in. Today productivity is out of the question and the way I feel – for the foreseeable future. I want to lash out at someone – not so much for the cancer, but for the cold. The chemo has changed the physiological composition of my brain. My Frontal Cortex has been burned, literally. At least it feels like that. My bullshit resistance has been worn thin, if not completely. My patience level has dropped precipitously. Front and center in my wrath is the media and politicians. Just having CNN this morning is driving me insane. “How can they not connect the dots. It’s right there in front of them.” And I was already well on the way to being like this before the chemo treatments even started.
Saturday 7:00 am – 98.7°: I don’t want to be up anymore. I ate, which is a good thing. And anything that is going to help me can be found in bed as well as sitting in a chair in the living room. More water though. The local grocery store opens at 9:00 AM – so getting it together to drive six miles is a worthy goal. I can go back to bed until then. Today is about food. And tonight is spaghetti. I may be at war with my body … but the war is only a figure of speech. Food is my friend, and food is what is going to get me back. Exercise – that’ll come later. Right now my limit is a six-mile drive … not a three-mile walk.
It’s three days since the interlude I described above. It wasn’t the first time and I’m pretty sure it won’t be the last time I have a dance with the number 100.4°. I feel better since the Neulasta (the metaphorical French) seems to have done its job. My body is still in ten levels of craziness … and probably will be for the next few months. And my physical energy level is shot right now. But I can think. My brain works again! I’ve battled the cerebral simpletons, and for now I’ve won. Hell, I wrote this post. That’s worth something. I make no guarantees on the typos though. I’m claiming I deserve a grammatical “get out jail free” card this time.
In my first post on the cancer subject two years ago, I wrote I almost looked forward to the changes in attitude and perspective that would the experience would bring me. Well, I’m done looking forward to any of it. I’m not a better person. I’m not thankful for anything I wasn’t already thankful for. I haven’t gained any new insight. However I got a lot of love from my Twitter world – which I have nothing but love for back. And a few people around here (in my physical world in Montana) gave me positive vibes. But second time around the novelty kind of wears off though – for most everyone. It is what it is. “You didn’t die the first time, so you probably won’t this time either.”
However there’s one thing, actually a pretty damn big thing, that came from this. In the month between the my first and second sets of chemo treatments – I fleshed out a project that I’ve had on the back burner for five years. This project, the Community Healthcare Concierge (CHcC) is a position, or actually a process, that expands on the idea of a healthcare navigator by connecting it to the community as a well-being resource maximizer. Think of the CHcC as a point person for a larger community well-being initiative. Using the technical backbone I developed for the Community 3.0 small business marketing and loyalty platform, the initiative integrates Engagements or prompts emailed and texted to a person to convince them to do something that’s good for them. These Engagements can be activities specific to their body, their mind or even their role in the community. It’s the implementation of the concept I raised in the post, “Well-being, Hope … and the Role of Community.“
If I didn’t have a relapse then I probably wouldn’t have had the impetus to put it all together, especially the database programming. So I suppose that’s a good thing. Regardless, this was the easy part. It was probably still in the synaptic morass of my brain somewhere, Sooner or later it would have shown itself. The hard part is the implementation. And doing it while fighting cancer opens up a whole another can of worms …including my compromised immune system and a probable encore dance with the 100.4°.
This stretch of bumpy road is far from over. My prognosis is supposedly good but who really knows. All I do know is I’m on the journey. The journey is mine and I have to own it … which I have every intention of doing – today and in the future. Fortunately I have a good set of shocks … and a good thermometer.
Note: I invite everyone to explore the “Road to Your Perfect World … potholes and all,“ the site I put together for the Community Healthcare Concierge project. Your input and suggestions are welcome and I’m open for collaboration of most any kind. The days of being proprietary are many Mile Markers behind me.