Approaching Normal?

Who am I kidding…I’ve never been normal and I never will be. But, my tumor markers could be!! 

Tumor markers are just guidance and aren’t an indicator for many, but they always have told my truth. I wasn’t surprised when my February scans showed progression as my markers had been steadily increasing from high 60s into the 120s. Luckily they’ve been steadily decreasing on the medicine I started in March. Today it was 38!! ‘Normal’ is 30. Can you believe it?

And I have hair, I can breathe, dropped 20+ pounds, I’m off the high blood pressure meds and more positive improvements.

The exhaustion is still here, I’m still weak/unsteady and I have joint pain as a result of treatment, but I can live with that.

I am so thankful for good results and all the special people still cheering me on.

Pneumonia. Again.

I asked my doctor today how I could have pneumonia and not know it. It seems I’ve developed a tolerance for it. A co-worker called it a super power!! How sad is that.

I have had pneumonia so many times that I’ve lost count. 

I reached out to my team this morning because I’ve had a spot on my back that has been bothering me and I thought it was a pulled muscle. I’ve been doing more than I should lately… obviously, to those who know me. But this morning it hurt so bad that the pain in my upper back was coming through to the front. But a bad pulled muscle can really hurt, right? Nope, the scan shows pneumonia.  Seriously. No fever, no other signs. And I didn’t have shortness of breath.

The good news is they didn’t put me in the hospital, probably anticipating the fit I’d have because nothing good happens in the hospital over the weekend.

So annoying. But I am grateful I’ll be waking up in my own bed tomorrow.

Hair

I think I need a haircut. I haven’t had one in almost 4 years. My hair isn’t long, but getting fuzzy and sticking up in random places. Plus I need a cleanup around my ears and the back of my neck. Such problems. 

It is very strange to have hair that has never been cut. How many people get that experience as an adult? It is very soft. 

Tyler told me it is kind of gray and I corrected him…it is titanium!!  Then he told me I look almost normal. I guess that’s a compliment? 

Quarterly Scans

Friday was scan day and the results came back that day even though the scans were late in the day. Darn Roswell for being super speedy. Overall the reports read positive, but mentioned a slight uptick in my bones which I worried about all weekend although I know better. Don’t react until you talk to the doctor. Right?? 

So I got the interpretation of the results today and all is well. There is significant improvement in my lungs, no new tumors and those in my liver shrunk. So what’s up with the bones?? My doctor thinks it is healing. Sounds like it is hard to tell the difference between disease and scar tissue on a scan. Since everything else is going well, I’ll believe him. For now.

This new medication is still treating me well. The stomach issues continue, but I’m managing it. Tumor markers are down to 51.5 from 120, blood pressure is good even off the high blood pressure medicine, I’m breathing better and my hair is still growing. I’ll take it!

You know what is upsetting? I think I feel too good for disability.  That was always my comfort when I had a bad day… I could always go on disability.  But I think I’d get denied. Such problems!! So for now, there’s chocolate.

My biggest issue today was the nurse wearing a concert t-shirt and calling me sweetie. I am NOT a sweetie. But I was good and stayed quiet. He was filling in so hopefully I won’t need to deal with that again. Dress properly and treat your patients with respect!! Yep, I think this means I’m old.

I’m Home

That overnight stay at the hospital was unnecessary, but at least it was only 1 night. I did receive IV antibiotics so that’s good. And, no steroids!! Hopefully I’ll kick this pneumonia quickly and be back on my way.

Hospital Time

I was so pleased that I made it over a year without being admitted to the hospital, but that all came crashing down today. Overall, I’m still feeling decent, but have been feeling crackling in my throat when I lay down. It’s been waking me up and keeping me up at 3am. So I told my doctor and now I’ve been admitted for pneumonia. Again. But this time I’m not getting steroids so I’m hoped this is just for 1 night of IV antibiotics. 

I was supposed to drive to Sara’s tomorrow, but now that isn’t going to happen. Mom was going to be there too. I’m bummed. My consolation prize might be a big bowl of buttery popcorn at the theater when I get out of here. 

I really do feel fine. They should reserve this bed for someone who really needs it.

Got my candy back

Great news, I get to restart my truqap at the full dose. Woot woot.