April 17 Updates

The Cross Cancer Institute is full of good people, but every department seems to be designed by nature to cause a huge chain of telephone tag. Today I had to straighten out a bunch of things due to them adding and removing me from appointments without my say. Communication is apparently difficult for oncologists (cancer docs), and the people in other departments have outright said so. My lad rarely says anything unless you prod him several times, and it's often incomplete information. This personality type does not translate so well over the phone.

Essentially, I'll just want to ask a few questions that can be answered over the phone, and whose type has been addressed over the phone. During the call, I will be notified that they'd added me in for an in-person appointment out of nowhere and this is the first I am hearing of it. I cancel it with them, but due to a miscommunication revolving around this appointment I never set up in the first place, they leave it anyway. Then they call a day later to confirm this canceled appointment, which wasn't canceled due to a misunderstanding. Then a call a day later to confirm a TREATMENT appointment I never set up. When I call to ask what the fuck, they look and see it's been canceled but I wasn't notified. I dislike drama and misunderstandings, so I outright told the guy "please don't add me to anything unless I call beforehand to ask for it, and we mutually set something up together". The oncologist is also a hard audience, I can't tell if he even wants to deal with me or not.

Physically, I don't feel much different from the previous week, though the TMD (when some cartilage gets knocked out of place on your jaw) on my right side is starting to be annoying again. Mostly my neck continues to feel very stiff, like you need to crack it but can't. I've put myself on a 6-hour cycle of painkillers, alternating between 1 and 2 pills so I have almost no risk of accidental overdose. The smaller in-between doses let me keep track of any pain progression, and the bigger ones let me sleep and get through the day. The stress of the cancer on my body gave me some tachycardia (heart beats weird and fast) since December which isn't promising. I've worked hard to get it under control the last few weeks, and I managed it but it's disheartening to see the control I used to have over slowing my own heartbeat has become that much more difficult.

At the moment, I'm just waiting for a few last-minute things while I try to find comparative data between AVD and ChlVPP to decide which I want to go in for. It's harder than it sounds. The latter is a lot newer for one. It also has a lower cure rate, as it's normally only offered to frailer patients, but I asked what the alternatives were and it was on the very short list of crap I can choose to do instead. I'm less concerned about the cure rate than the longterm effects. When he said the 6-cycle regimen (12 doses) on A(B)VD was what would be required for my stage of cancer, I knew I didn't want that much; things always seem to break down for people health-wise after 4 cycles since Vinblastine and anthracyclines like Adriamycin are no joke. Neurological effects, for example, were much more pronounced between 4 and 6 cycles of ABVD; of those with noticeable cognitive fuckery, a certain chunk was affected in >2 cognitive areas. The 4-cyclers were at ~13% and the 6-cyclers were at ~34%.

About 2 weeks' worth of cramming for an oncology exam I'll probably never take later, as well as collecting hundreds of first-hand experiences of people who have gone/are going through the same regimen, I eventually spat out a treatment plan I would prefer: 2 cycles, a PET scan, and then if it comes out negative we can decide if continuation is medically necessary for a max of 4 cycles. No rads.  When I outlined it, the onc said that's what they were going to do anyway. Because communication is their strong point, he had never actually said so. So I accidentally made an up-to-date professional treatment plan down to the meds and accompanying therapies. I never really trust anything medical I say, but at the same time I do get why some of you fuckers keep coming to me for unofficial diagnoses. Can't tell if it's all repeated lucky accidents or not, no matter how much obsessive data collection goes into the shit I say.

Anyway, I'll be aiming to start around the end of the month or the beginning of May. Streams may slip, I may forget to log in or end up sleeping through it, or just outright forget passwords (fairly common). Depending on how I react, I may not even be able to get out of bed. Thankfully I'm used to moving and eating when I feel like absolute fucking shit, so at least I have practice. Doc said at the end of March that I have around 7 months to live, so I'll be down to around 6 instead. I've controlled its spread pretty damn well. I even got a small tumor on my right to go away, and shrunk a second one down to almost nothing. The big ones I can only make fluctuate very minimally size-wise, around 1mm up and down, since there's too many cells in them and they'll probably keep growing so I do need front-line treatment. Unfortunately. That's where I stand for now.