May 15 Updates

God, where to start. TMI as usual.

Last week, the swelling in my legs was so bad I couldn't even walk. It was like carrying an Atlas stone everywhere just walking normally, having to pivot and "throw" each leg for every step. Eventually I just couldn't walk for a while. While  that was going on, I got so bloated and full of waste that my intestines felt like they were going to rupture with every move, so by the time the swelling went down enough to sort of move again, I just couldn't. My feet felt off and kept going to sleep, knees felt weird and hurt sometimes. Lost feeling in my thumbs, index fingers, and middle fingers at the end.

May 9:

When I woke up the day after the stream, I had erupted into such a violent case of acne that I'd thought I had gotten hives or caught in a chemical spill. I'd never had acne in my life and had no idea it was so painful. They were effectively open lesions all over my chest, shoulders, neck, forehead, and scalp. One got infected. Just washing my face and neck normally lead to blood getting smeared all over the towel. The sheer discomfort from my legs, injection arm, tenderness across my chest and arms in general, and the constipation kept waking me up. Now I had to deal with extremely painful skin. Regardless of what position I fell asleep in, I would always wake up on my back and leaning slightly toward the right, simply because every other way was too painful. My right side began to get sore, like the beginning of bed sores. The psyllium husk and Sennokot didn't help much at all. The DEX bloating was still in full effect, too. My neck nodes swelled up with fluid, possibly lymphedema. It hurt, anyway. Must have been happening in my chest too since I had a damp, cold cough this entire week. All of my extremities felt "dumb" like they wouldn't respond correctly, my left leg in particular. Chest hurt a lot. Elbows, shoulders, left wrist. Can't stand up without prepping for it for an hour or so beforehand. I want to move around so bad but everything in my body prevents it. Nerves in my fingertips felt "damaged".


May 10:

Chest and neck hurt really bad. Inside of my ears hurt, my jaw and face are swollen and tender. Most of this is from the steroid. Never again. IV arm hurts a lot. Breathing hurts. Nose hurts and feels "stiff", probably swollen too. Everything hurts. Arm hurts. Chest hurts. Everything hurts. After it hits an apex, my head stops working properly. It's like being a confused child, you can't really reason or think logically. That part of you is just not there anymore. I keep being compelled to cough by the thing in my chest, but coughing never actually does anything because there's nothing in my chest or throat to actually clear that way. It just makes everything hurt more. I tried popping more acetaminophen but they have less and less of an effect. Had to lay on my kitchen floor for a while until the pain killers kicked in a bit. Tachycardia is still very bad. Every beat is very hard and rocks my body. When it hits a peak beat speed it actually hurts. The doctor insists it's just the disease putting stress on my body, but I'm not so sure. Even if it is, that's not the best news anyway. I called the triage nurse to report my symptoms, it took a long time to get through. They recommended going to ER, but I just couldn't go anywhere that day. I could barely get out of the bed to use the bathroom. Ended up falling asleep for a while on the floor, dunno how long. Wake up extremely bloated still, and coughing. From the ankles down sometimes go to sleep. Jaw still hurts, chest hurts very badly, arm hurts very badly. There was some programming talk in a chat and I couldn't concentrate enough to follow. I really hope the last thing I see in life isn't the Russiaboo whining about women.


May 11:

Heart is a bit calmer today, chest uncomfortable. Nothing in digestive system has moved. Left leg still laggy and heavy compared to right. I keep almost falling down the stairs. Ankles don't seem to want to work properly. Chest is tight and it hurts. Left arm is in absolute agony. Pain killers don't help much, I know it's likely a combination of swelling, inflammation, and possibly nerve damage. The acne is still everywhere and painful. Chest hurts, very tender, especially around sternum. Heart and pain go into predictable feedback loops on 6-8 hour cycles. My heart rate will go up, my shoulder and arm will begin to hurt, my heart with race more, my tightness begins, neck and chest hurt, magnifies until it's akin to torture, after the crescendo my head goes for a while, then I get very tired and everything aches, like after something comes down from a swell. Headache sometimes. There's some kind of inflammatory reaction going on, and I can't rely on my usual dietary intake of things that control this because my digestive system just isn't moving. I've gotten stabbed and cut open before and simply laughed it off, to the horror of onlookers, and this doesn't compare. This is a very bad pain. Ended up on the floor at the kitchen sink, I may have fallen, I don't even know.

The triage nurse had mentioned that the doctor will probably lower my DEX dose. This bothers me greatly; I'd brought up my shoulder before treatment and my concerns were shrugged off, and now I'm effectively rendered non-functional by the pain. I'd mentioned that I likely wouldn't need to many antiemetics and questioned why I even needed the ondensetron on top of the other shit, and now I'm so constipated it's a genuine health risk. I brought up concerns about the DEX on top of everything else and the dosing, and now my body is ruined and my left leg is fucked. All of this could have been avoided, but no one fucking listens to me. I'm dropping the onden altogether if I can, and requesting the DEX be greatly reduced or altogether eliminated if possible. He had me take 3 on treatment day, then 2 per day for two days following treatment. Way too much. I knew it but followed the prescription anyway for a day. I halved my dose the second day, even though everything in me was saying not to even take THAT one. Whenever my body says one thing and someone says another, and I DON'T listen to my body, everything goes wrong. Fuck them all. I'm going to request my DEX be lowered to 2 on treatment day and maybe just ONE pill following that, none of this fucking 7-dose nonsense. AWFUL.

I ended up going to the closest ER when another pain loop started. I get through them by setting rules for child-me to follow when the pain is in full swing and my mind goes. It's hard to get complex sentences or concepts out, or answer questions in that state, so it makes things easier. Follow the rules, don't break them no matter what. My rules for my ER pain trip were: 1.) Inflammation first, pain management second. 2.) Get chest and left side checked. 3.) No IVs unless absolutely necessary. I wanted to go during an attack with the hopes that any tests or scans they did would be during peak heart rate and nerve pain so I could get a reading to work off of. Unfortunately, there was still a wait despite me exhibiting almost every symptom of a heart attack and it threw off the groove somewhat.

You get a bad feeling in this building, like something's off. The ER nursing staff at this hospital were not equipped for dealing with someone who could not answer questions or behave normally due to a combination of pain and medicine side effects, with bad bedside manner and this general feeling of disapproval from most of them for your daring not to act like a normal and respectable human. The nurse I dealt with was rude and seemed fed up and impatient, like he didn't want to deal with any of this. I answered what I could, where it hurt, how bad it was, what meds I was on. He left, doc eventually came. She was nice (that genuine sort, you can tell), and listened, then disappeared.

A blood work nurse appeared at some point and wanted to take a sample. Childbrain me knew there was something about needles I was supposed to avoid, and unfortunately Rule 3 kicked in when the nurse was unfortunate enough to say she needs to "use an IV" instead of just "give a poke", and all I could say was NO IVS. She kept asking me questions, like if I was officially refusing to be sampled. I couldn't explain or articulate the nuance of what the issue was or why there was something wrong with the situation, I could only really fixate on "IV = bad" but not explain why. The fed up male nurse said "we need to have a chat" and tried to use logic on childbrain me, who knew the ins and outs of blood sampling but could not communicate why this was wrong. Frankly, he didn't care, but I did manage to let the other somewhat-concerned nurse take a sample.

The kid brain started to wear off a bit after a while and the fatigue began to settle. Kept forgetting things like putting my shoes on when leaving the room or just fiddling with anything they put in my hands prematurely, like the urine sample cup while my mind tried to grasp for things to focus on and bring the world back to clarity with. I was still in a fair amount of pain at this point, just not as over-arching. The nurse wanted to put me on IV fluids despite being capable of drinking water and even bringing my own along and not being dehydrated, naturally I refused the IV. He seemed annoyed. The nurse wanted to inject me with a bunch of morphine, and Rule 1 groggily kicked in. I was supposed to listen to pain management options for consideration, but they were secondary and not my main reason. I said I'd consider it, and he responded in a curt manner that if he didn't use it this moment he would have to throw it out, as though trying to impress that it was a waste.

I asked if there were any other options, he said they may have oral ones for taking home but he would have to talk to the doctor and that it would take longer, all said in manner that reflected that I was making his day harder and I should just mindlessly go along with whatever anyone says. I said no, he said "fine" with an uncaring air and tossed the full syringe into a near-full garbage bag. He asked why I was even there, the first time any one had even bothered doing so, and that if the doctor says to do a thing I should probably do it. You know, despite it not even being my purpose; the last thing I needed was something else clouding my head, and making the pain go away for a while wouldn't solve the problem. Putting together the sentence for him was a chore, but I managed to get out that I wanted to get my heart checked due to pain and tachycardia. I got what was essentially a "k" and he left.

I was eventually wheeled off to the x-ray room, where they took 4 shots instead of the usual 2. The guy running the machine seemed tired but in good humor, a nice change. I was wheeled back to my room and lay on the bed in the dirty room (watered-down blood stains all over the walls) and lay there for while. I was starting to feel a bit better as the pain backed off, but was in too much pain and intestinal discomfort to sleep, nevermind my heart beat shaking me awake. Could only doze. Heart rate started to go down a bit, but my arm started hurting again so I knew the loop was just going to start again. Some time later, an hour, 3 hours, no idea, doctor came back. Despite going in for what was effectively my heart about to explode and some nerve pain, one of the first things she brought up was her concern over how constipated I was. It was that bad. She said to just go ahead and switch to a PEG since the smaller things aren't working and psyllium can sometimes do the opposite of what you want. She recommended a CT scan for clots (a good idea, but didn't seem correct to me in my case), and I wanted to go over the details of when and if it was necessary, but I was too tired to do much else except nod.

She asked if I did want some morphine, and I said that I COULD take some, but it would be like taking it for constipation pain: it would make it stop hurting but it wouldn't solve the problem. The issue was that it was the swelling and inflammation, starting a loop and pinching my nerves. She was quite attentive in listening to my reasoning, and she recommended an anti-inflammatory that was around what I was looking for. Non-steroidal, nothing too interactive, just something to help. Naproxen, if you're curious. I popped it and headed home at around 5am the next day. My heart rate climbed and my arm began ts agonizing burn again, but the loop didn't happen, like it was stymied somewhat. I was glad for that much, happy that some of the edge may be taken off by this and to stop that horrible fucking feedback loop, and went to bed.


May 12:

For the first time in weeks, I woke up on my LEFT side. And it didn't hurt as much,. My head seemed clearer, and my chest less painful through all the usual tenderness. The pain control wasn't prefect, but I hadn't expected it to be. I just wanted to break the processes that were causing all the issues, and with them a bit more under control I was much more functional. It helped with things I didn't expect though; my jaw pain effectively disappeared overnight, my legs were still "dumb" but slightly more functional, my face less sore, and my heart rate had even gone down a bit. I'm now wondering how much of it is due to inflammation and in what part. The loop still wanted to start, but that's as far as it got. Without constant pain radiating all across my upper body, I can now confirm where most of it is coming from. My shoulder, my IV injection site, and sometimes around the heart. There are also random little hot stabs in certain places in my chest and abdomen which I am beginning to think may just be neuropathy. It had likely contributed to my just not knowing where the fuck anything was coming from. Despite being tired from not sleeping and being in constant pain for a week, my plan seems to have worked and I'm grateful to pre-attack me for being smart about the approach to the problem.

I pick up a bottle of Naproxen at the pharmacy and the PEG. The latter has no flavor, it's like your tongue expects a salty taste but it doesn't show up, so there's just this ghost of salt that leaves immediately. Mostly I'm just really tired, like the return to rest and normalcy after running a marathon. It's an okay-tired, just pronounced. Body doesn't want to think or do much except take full advantage of the lull to recover.

Apparently the shitty nurse hospital had called twice and left a message. Once in the early morning when we had finally gotten back to sleep after the ER Odyssey and were unlikely to answer, and left a message before lunch. I tried three times to return the call, but kept getting forwarded to a recording that insisted I leave a message, then saying the messaging system isn't set up. Managed to sort of walk around outside, leg is FUCKED.


May 13:

Woke with heart pain that went away. It's hard to tell if it's not just a nerve from my shoulder getting pinched. My heart rate is still all over the place, neck has been painful on the right side since that acne got infected. Thankfully I healed that particular problem, but he pain remains. The skin by my wisdom tooth is swollen and I can't stop spitting blood in the bathroom for a few minutes despite it not being a back swell. Have to clean my mouth out a few times. While I wait and see where that goes, I look up info on the hospital(s) I've gone to and the one I went to for ER. Wish I'd read the reviews beforehand. All of my issues with the place were repeated back to me over and over in different words from a long list of people. The rude nurses, the bad bedside manner, the dirty rooms, the general lack of professionalism, the waiting times for people clearly needing some immediate attention and getting passed over for less serious cases. I think the only reason I was seen as soon as I was was because I'd been smart enough to bring my cancer triage letter, meaning they'd probably get in some deep shit if I DIDN'T have some priority given. The only positive reviews I see are either vague bot-like comments, or from women who delivered kids. Never going back there. I hope the doctor I saw ends up somewhere better.

I got ahold of the hospital to return their message, which hadn't had any info other than the number to call. The receptionist said she had called 4 times even though we only saw 2 on the phone and had been next to it during a few of the times she'd listed, and didn't seem to believe me when I said I'd tried to return the call multiple times the previous day but couldn't get through to anyone. She had that same weird strain that the male nurse had had, like she was fed up and didn't want to talk to people on the phone. I sympathize, but come on. I chalked the missing two calls up to a telecommunications error and got down to business. Apparently they'd wanted me in for a CT yesterday despite not going over the details or time frame for it happening beforehand, and the call had been essentially to confirm that I was going to come in. This seems to be a had habit in some places, but it's magnified in this particular hospital due to the lack of communication and the general air of no one wanting to deal with you. I questioned if it was necessary, and she said if I didn't want to come in that was fine, she guessed, and that I was uncomfortable with the idea and we could cancel. At no point did I say I was uncomfortable with a CT and that I was just questioning its necessity, but I said just cancel it. I'm uncomfortable with dealing with that hospital, so I suppose she wasn't completely off.

My temperature was up and I was having a bit of trouble focusing my eyes, which meant a slight fever. I cleaned my mouth again, showered, and packed my affected gum area with grape seed extract powder. Still tastes awful, but it works. Walking, very stiff. Knee hurts, calf seems to want to cramp but never quite gets there. The garbage they put in me may have caused permanent damage. I'm fucking livid.


May 14:

Saw onc for a clinic checkup. I listed all of my concerns with the onden, my nerves, and that I wanted to lower my DEX dose. He said I could completely eliminate the onden if I wanted. Why he didn't fucking say that the first time my concerns came up, BEFORE this became a problem, your guess is as good as mine. Remember the DEX dosing I said I wanted? Didn't have a chance to say my numbers, he said his own and they were exactly the same. I made a professional dose reduction again, it seems. He was very concerned about the neuropathy and said he would halve my Vinblastine dose, but I don't want to put any more on top of this damage without trying to fix some of it. I've only been active for a day and a half and my mobility has been very limited. I have no words for how fucking pissed I am that none of these concerns were addressed or seen to until AFTER they became the problems I knew they would be.

He kept trying to blame my bloating and fatigue and pain on my fast, and he seems to not like fasts in general. All of my issues started when I'd been eating well for a few days. Onden is a well-known paralyzer of digestive systems, me not eating for a couple days during the infusion wouldn't go jack shit. I know it's not the issue. When asking about a physiotherapist to just LOOK at my shoulder to see if it was lined up correctly, he basically brushed me off again and said there was nothing he could do and no one he could recommend me to, especially on-site. He likes to do that. His nurse, hilariously, said it would be no problem at all and he could hook me up easily with someone. I think they need to talk more and get their information properly pooled, because this is getting ridiculous. Walked for a while. Uploaded some movies and went to bed.


May 15:

Called the clinic back. I'm postponing my next treatment for a week, instead of the 19th it'll be the 26th. I'm going to try to fix some of the damage that was done to me. I'm not going to listen to anyone's shit anymore and I'll be adjusting my own doses and intakes of everything from now on according to what I know and experience if they run contrary to what the doctors say. This has happened far too many times and I'm tired of getting burned by people who think they know what they're talking about. I have no words in any of the languages I know in any combination for how fucking pissed I am.