New Treatment Side Effect

Here I am years after cancer enduring yet another side effect.  I should have posted this a year ago, but I got busy and, to be completely honest, I forgot I had a blog.

While I am still a happy member of the lucky 9%, I am now a member of the long-term side effect catching up to me group.  I am now the lucky, still alive and living with Psoriatic Arthritis.  This is directly related to the immunotherapy from 2013-2014.  As long as I am still up and moving, I'm still calling it a win.  It is just a new sort of normal.  I've been battling for about a year now, I think.  looking back, the psoriasis began in 2021 or 2022.  At first, it was an awful skin condition that took a while to figure out.  I sort of felt like a snake/human hybrid.  The psoriasis on my face and scalp was terrible.  It wasn't easy to go anywhere because it felt like everyone was staring at my inflamed and flaking skin.  It did take a few years to spread over the rest of me, then the joints got involved after I had wrist surgery.  

I had surgery on my right wrist in August of 2024.  After years of being unable to do a proper pushup, it turns out my right ulna was 2cm too long and had been beating up my wrist bones for ages.  I still can't do a proper pushup, but now I know why.  I will not recover the mobility I had in that wrist, but it doesn't hurt like it did anymore.

So, today I have inflammation in some of my joints.  Oddly, the roughest joint is my left hand/wrist.  Currently it aches all of the time and it takes a good hour or two of warming it up in the morning to make it function properly.  Most of the affected joints are on my left side.  Left ankle, knee, hand, wrist and shoulder.  Sometimes the right hand/wrist gets involved and the right shoulder, but that is nowhere near as bad.  

I've been seeing a Rheumatologist.  I get bloodwork several times a year because the meds can mess with me.  I'm on my 3rd medication.  I take a Skyrizi injection every 90 days, daily anti-inflammatory and a weekly anti-inflammatory followed by a strong B supplement.  Anti-inflammatory drugs eat B vitamins, so I have to keep up with my B's, calcium, D and magnesium.  

I will eventually find an even keel.  Right now, work and studying are getting in the way.  I am trying to get walking on a consistent basis which should also help with the inflammation, I hope.  Also, the insurance company has my blood sugar is too well controlled so now I'm off of that medication until my bloodwork comes back out of whack.  It isn't as if it is controlled because I take my meds like a good little patient.  Insurance companies are the Devil!  Proffit mongering Sociopaths!

Right then, more to come.  I need to get home, cook dinner and play with my critters.  I need to remember to re-aim my bird feeder camera so I can see the birds better.  I should post some gratuitous squirrel but photos since they are bigger than my camera lens can focus on.  They look huge on that camera!

I will attempt to start a medical Journey Support Group at my Company.

I made the decision to start a Medical Journey Support Group at my office a few weeks ago.  I will be speaking with HR about it this afternoon.  I've downloaded a metric crap ton of information from the web.  The ACA is great and there is a book on starting your support groups for cancer.  We have over 2000 people at my company, and I thought it I could help just one person, that would be great.  

We already have an amazing PRIDE group, and I attended that meeting today.  I'm only an ally, but the goal is for everyone to be able to be comfortable at work.  My company is an excellent company to work for, and we all work hard to show compassion to our co-workers.  

My goal is to provide a resource for my co-workers going through a life changing medical event or supporting family or friends going through a medical, well anything.  I was clueless when I started my cancer journey.  I'll update this after my call.

My meeting with HR went great, but she asked that we open this up to other conditions as well.  We have a lot of people in the company who may have something other than cancer going on that they may have experience or questions.  I'm thinking Cancer, but others may have experience with Alzheimer's, Elder Care, Autism, MS, Diabetes, Disabilities, physical or learning, surviving losing someone to suicide, etc.  There is probably someone who has experience, who could be a resource to answer questions, listen to someone who just needs an ear, or can say, I know someone who has been through it, I can give an introduction.  Google only goes so far.  I do have some experience with Alzheimer's disease but hesitate as my experience may not be as helpful as I would like.  

I'm starting to get excited and terrified about putting a group together.  There will be a chat feature where a co-worker could post to the group, does anyone have experience with xyz?  The query goes to the teams' group, and anyone can be linked to someone with that experience.  We can publish a list of resources which will grow as the group matures.  We shall see how this may go.  My biggest worry though is that people respect everyone's privacy.  People who approach our group don't want everyone to know what is happening in their life.  Privacy must be respected.  

I think this is why I would like to limit the group to Cancer in the beginning.  If there are people interested in other issues, those can be added.  I think starting too big in the beginning would be extremely difficult to maintain.  

I am open to suggestions at this point.  Does anyone out there have any experience in starting something like this?

Wow, this was really old.  I just found it in my drafts.  Currently I am 13+ years cancer free.  I'll be 14 years Cancer free October 24th.

Old post:

It will be 4 years October 24th.  It feels really nice being that close to a milestone.  Only one more year until I get to be considered 'Cured' and can give blood again.  There is still that nagging in the back of my mind which occasionally worries about another re-occurrence of the disease. 

I even got Great News from my brother about Dad's cancer prognosis.  His Doctors have declared him done with cancer.  Dad is close to 80 and was lucky enough to have a very slow growing variety of pancreatic cancer.  His doctors believe it will be another 20 years or more before it becomes a problem again.  Dad really doesn't like doctors so I am quite sure that made him happy.  Now we just need to get him in to see a neurologist for an evaluation after last year's stroke. 

Mom has further declined.  Alzheimer's is a dastardly disease.  Lewy Body Dementia just makes it that much worse. 

Other than that I am back to my very bad habit of working too many hours again.  It is incredibly easy to fall back into that habit. 

Sorry all, I thought I posted this way back when.  I haven't logged into my blog in several years.  I'll just leave this here.