Thursday, October 3, 2019
Dictated to Google, please forgive the rambling – but an in-depth hand-written update – ain’t nobody got time for that!
Well, today didn’t go quite as planned, but then does any day really go as planned? I was scheduled for my typical chemo treatment today in Milwaukee and the folks there had a little trouble trying to insert an IV into my arm. I guess I should update you on last week about the IV that was put in my arm. It went in easy enough, but it was swelled up a little bit by Tuesday and felt like it was bruised so I asked them not to try and put it into my left arm this time.
Anyway, they called in the I.V. team (again) because the nurses at oncology have pretty much given up trying to put an IV in me, so the nice lady from the IT team also tried several times. She even called in three of her compadres to see what was going on to see if they had any advice. (The screen for the ultrasound machine was acting up a bit).
Apparently my veins have had enough of chemotherapy. So it was decided that I needed to have a PICC line installed (a direct and semi-permanent tap into a vein in my upper arm) and of course that brings in a bunch of other issues – one of which is transportation. I had ridden in on the DAV van today, so trying to schedule a PICC line installation at this late hour would be tough to get done by 5:30 or 6 PM, so I asked the nurse to see if they can schedule a room for me since I had to come back tomorrow to get a second chemo treatment – and they did just as a back up – but it turns out that the nurse Amy has some pull in the PICC department, so I was able to get a line installed right around lunchtime, so I did have time to get my treatment and take the DAV bus home – which worked out well for everybody, though the other DAV riders had to wait about 2 extra hours for me. 😐 (I’ve had to wait up to 4 hours after my appointment for other DAV riders in the past, it’s the price you pay for a free ride.)
Fortunately, my white blood cell count came up so that I’m no longer in the danger zone as it pertains to infections and stuff like that so I don’t have to wear my mask – but more importantly I believe that I can eat just about anything I want to now, which is a very very good thing. The ‘neutropenic diet’ is very restricted. Almost no fresh food at all. Also, my blood count came up so they were able to install the PICC line – they had hesitated before because they didn’t want to risk the infection.
Of course, now I’m going to have to have a central line anyway ‘PORT’ they called it so I wish I would have been able to wait and not install a PICC at all but just get the port. But then that’s the way things go – we have our plans and God has his plans and His are greater than mine so who am I to complain. I’m just glad that I don’t have to spend the night in Milwaukee even though at the little Hoptel (temporary Military rooms) they’ve got on campus do have a great selection of snacks and stuff. LOL…
Mixing work and treatment
One of the challenges of not being in remission is the treatment schedule. When in remission, I’d have one Dr. visit (monthly or quarterly depending on labs) and one monthly I.V. bone strengthener treatment. Now, I have at least two treatments three weeks out of four, and one Dr. visit monthly – but usually not on a treatment day. As you might imagine, this can play havoc on trying to get work done. Add to that the fatigue from the disease and my steroids fun sleep patterns, and we’ve got an interesting and chaotic schedule. It’s forced me to tighten my systems, add a few management tools to keep me on track so that I can get the same amount of client work done, while also reinforcing my own marketing. For now, it’s difficult but manageable. Let’s hope it stays at least that good. I need to pick up a little more business to compensate for some added expenses and the necessity to purchase Obamacare in order to qualify for clinical trials. <begin rant> Want to know why your taxes are so high? A doctor’s visit at the VA costs me about $50. The same visit at Froedert hospital (where I was referred for clinical trials info) billed me $3000. The VA will cover about $1800 of that. Ridiculous. I’m sending Obama the bill, as it’s definitely not affordable, lol.
So one of the great things about technology is I’m able to check-in at work without actually being at work so I’ve checked emails and notifications while hooked up to the I.V. The wifi in the treatment room is a bit spotty, much better in the waiting area – but my Mint cell service seems to perform well too.
Our car has wifi and Apple Carplay, so I can get/receive calls, SMS messages and set reminders on the road.
Normally I would go straight back to work right after I got home – which was about 3:30 this afternoon – but I feel like I need some chicken time. And chicken time is kinda like therapy for me, it’s like getting back to nature but you get to watch the chickens do their thing (I let them free-range in the back yard during chicken time) and it’s very relaxing. Some folks have other relaxing pastimes, but I have chicken time – I’m feeling my sister Selena would understand.
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I’m gonna close the post off for now and maybe will update something tomorrow after the chemo appointment.
Friday, October 4
Exciting appointment today, I arrived to an electrical blackout at the Oncology/Hematology clinic this morning! They were doing a campus-wide test of the electrical backup system this morning, so some areas were dark for a time. As an emergency communicator, this is comforting – knowing that such a large institution has – but more importantly tests their plan. 😉
Fortunately, during the brief wait my PICC/PORT RN, Nurse Anne Marie took me to the 6th floor to advise me of the care and feeding of my new PICC line, which she said probably will only be there a few weeks since they plan on installing a Port.
The Port is a longer-term apparatus and is installed subdermally so it’s more resistant to infection and won’t snag on things (or get attacked by the cat). This will make labs and treatment easier since an I.V. or blood draw pokes will be at the port instead of my arms. Good too, because if I were to get pulled over by a cop right now I’d have to explain how I’m not a heroin addict, lol.
Chemo went well, it wasn’t crowded like it usually is and I was in and out in about 2 hours!
I’m still reveling in my ability to eat normal food now, we were visited by the tomato fairy yesterday (our neighbor Carol has been dropping them off from time to time), and I couldn’t wait to have a tomato & cheese sammich.
