Testing, Testing, Is This Thing Working?

I’m trying to do this whole thing using speech to text, because that’s something I have to get used to if I’m going to use technology more. It’s awkward because my writing voice is better than my speaking voice. I can take time with my writing to find the right words, cross something out and add something better back in, and let the words flow naturally. I’ve had to practice most of my life to speak decently enough to be relatively understood. I’ve picked up skills on how to give speeches or long talks in recent years; however, I still have begun those speeches and talks in some form of text whether writing or typed out. See I would go back and change that to read in some form of writing. But you can’t do that when you’re speaking and that’s why I haven’t made any updates on my cancer block ( another typo that should read b l o g and (

I’m just starting a

I tried to start a new p a r a graph and it started a new one. This is going to be tricky. 

In May I was granted full Social Security disability status. It’s frustrating because I am just disabled enough to not be able to work and just functional enough to feel like I’m not disabled. How’s of October, as of October I’ve been working on getting my capabilities and limitations updated to determine if I continue using my long-term disability insurance from my work or remove it and have my Social Security disability insurance increased to reflect no additional income. The medical system is so overwhelmed lately that I couldn’t see my primary physician to begin testing until middle of January 2025, roughly 2 months out. I was lucky. Somebody else canceled, and I got the appointment a month sooner than my initial date. 

That appointment was today. The 11th of December. 

I’ve gotten so used to what I can do with daily adjustments that going through the majority of my body’s limitations within an hour was so deflating. I can tell people what limitations are, but having someone witness them in real time is a reminder, a very immediate reminder that my body is still broken. Granted, it’s still healing, and it’s going to take a long time to heal. I’d rather have a broken but healing body sin ( sin was a verbal typo, but in Spanish is very appropriate) without cancer complicating things. 

That’s part of the good news. I have NED status. I have a local charity looking into changing my radiation tattoos into something more meaningful to celebrate once the holidays are over. I’ll cover other ways I’m celebrated or celebrating later, but for now I’m not doing okay with how this morning went. 

I forgot the word for camel. One part of the cognitive test was images of three animals on their profiles and all I had to do was say what animal each was. I’m not kid who watched all of the animal shows and can’t get enough of good animal shows. ( The reality shows lately do not count. They don’t have enough animal in them. Clo ) I was so obsessed that I was the kid who wanted to be a vet, volunteered at a local vet to experience the environment and witness what the animals go through and join in in caring for them and seeing the worst of it but also the best of it, and later in life even tried going back to school to start seeing if I could understand enough medical terms and specifics needed to be a vet. At that point I was nowhere near the idea that I was going to be the vet at the zoo, but I would have been happy to be an assistant at a local place who also covered the front desk. Because of other issues that it’s going dinner pan out either. Trying that again, because of other issues that schooling didn’t pan out either. 

But I knew the word camel back then. I recognized the word for lion and rhino, so two out of three, yay? 

I was asked what date it was. I knew I was a Wednesday and it was December and it was 2024, but I wasn’t sure if it was between the 12th and the 17th, because I knew Christmas was coming up. I have enough plant regularly that I can most of the time keep track of the days of the week such as Sunday morning Monday evening, Thursday evening, for any morning… Friday morning. My calendar has had reminders set up from years ago indicating which weekends the boys are over, but I always have to check the date. I was usually relatively close, maybe one day off, but…. I guess I have a superpower from chemo that lets me travel a week into the future and nobody else knows. Including me. 

The sad part is I can’t remember most of the cognitive tests even though it was less than 24 hours ago. There was one where I was instructed to say as many words that I could think of that started with the letter f. I could not include names or numbers. Of course I clarified if swear words were allowed, because I am sure the letter was chosen at random. I could think of plenty of longer words including frustrated but also fantastic, futuristic, fortuitous. I also said four but quickly specified not the number. The speech to text is convinced I said four. The test only took a minute, I think, and I’m sure I repeated at least a couple. I couldn’t tell you what words were repeated and that bothers me. Even speaking without writing something down ahead of time I wouldn’t have repeated significant words like that. There are filler words I’ve used frequently when talking to someone, and maybe when I was really excited about something and felt only one word could describe what I was talking about then I would repeat that word. But, not when I could choose any word I wanted and take as much time as I wanted. 

The memory issues are one thing. I had memory issues from the first round and it took some time but eventually they for the most part recovered and didn’t affect daily life. I’m coming up on a year and still dealing with the same extent of chemo brain. Someone can double check me but I don’t think it was this bad last time. I’m pretty sure I was back to work this time. But physically I was doing better on the recovery end, for the most part. Yes it was more damaging in significant ways and in such short periods of time, but I healed up much quicker back then. This time, I made it through all 12 rounds of chemo and 10 rounds of radiation. In other words I successfully completed treatment. So that’s one thing I’m celebrating, another part of the good news. 

Physically, I feel like every time I make some progress whether that’s strength or stamina or sensation sensitivity touch whatever you want to call the last one dealing with neuropathy, within days it’s like it never happened. I spent so much time in the summer in the pool, because it’s me where else would I be in the summer, and did make a lot of progress stamina wise strengths and even energy. Then winter hit. Lots of other things hit after the pool closed and before winter hit, but that’s another issue. 

In March I got new shoes to go to a concert in, and I realized before getting the shoes that all of my other ones were not stable izing. I would go for a walk a mile away and look like I was drunk. I would have to concentrate in order to keep my feet walking relatively straight. After trying on four pairs of shoes, the only ones I felt stable in were a pair of running shoes. They have wider base more cushion, and help keep motivation… No momentum when you are lifting your foot back up to take another step. They worked great for the concert and have been wonderful the rest of the year. But they’re the only shoes that do help me. I’m trying to find a pair of nicer shoes or boots that don’t look like something that just get used to the gym. So far no luck. 

Anyway, all that to say that the other part of the initial testing this morning included physical… Tests. Can’t think of another word that I want to use. My doctor checks what I could do with shoes and then had me remove them. I used to dance easily ( poorly to some people’s opinion ) and do yoga even when my strength wasn’t that great and handle standing on one foot for a long minute. I would walk in a straight line toe to toe, sorry toe to heal, for fun and especially on curbs and especially especially to compete with my kids. I couldn’t do that without help today. Even after taking my socks off, when I thought he’d asked me to because that would help my feet better grips floor, My I didn’t have the balance or strength or it’s a new word sense of position in space, to stand on one leg for a second. I can still touch my fingers to my nose with no problem, so that’s a win. My doctor did confirm when a person’s nerves are still healing such as from neuropathy damage, it can affect the body’s sense of position and muscle reaction? Adjustment? 

I still dance a little bit, mostly when doing dishes. I have the counter to grab if for some strange reason I lose my balance. I’ll do some stretches while standing in my room, but I have my bed to fall on. I used to dance a lot in the summer. But that was in the pool. I’ve always felt I can do anything in the water. 

I danced a lot in the concert in March, but I had to sit out half of the bands. I planned on regulating how much energy I spent on each one, but there was one group I couldn’t help it and lost control because their music is just that good. So I missed out on at least a few I looked forward to, and probably won’t go to any all day festivals until I get all of my strength back. 

The last concert I went to I was planning on keeping a spot on the side where I could easily sit and not worry about getting stepped on on accident if I needed to take a break. Oscar managed to get me access to the ADA section. By this time, I’d been granted federal disability status. This is one of those moments I don’t feel disabled enough and had to remind myself that’s what these seats are for, so people with limitations like mine can still enjoy the show. That’s where I met the wonderful people who run ink against cancer. I don’t know how to capitalize the first letter of a word yet and speech to text. I’m so glad Oscar got me those spots because that was the last some 41 tour, and even though I wasn’t in the middle of the pit like I imagined I’d be when we first got the tickets, I still had the energy at the end of the night to sing and dance in my chair and headbang along with Oscar and be a part of such a good crowd. “Fat lip” should never be heard sitting on the side. 

There’s more I’m still struggling with, but I’ve been working on this for an hour and I need to go to sleep. So I’m not going to edit this before posting it. Otherwise it’s going to be harder to get used to and someone out there might think I’m dead or in a coma or I don’t know what. So for that person and for my sake this is a new capability. I am going to practice it like a new capability. And that is another piece of good news.