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.

Boston

We were in Boston today for my pulmonary consult. I’m happy to be home as we are not city people!! The traffic is nuts, but we tried to make the best of it.

I am still feeling decent so I left Dan in the hotel on Saturday and met a co-worker at a huge mall. I did take a few breaks, but I walked that whole mall. Yay!!

The next day Dan booked an hour walking tour of Fenway stadium. Guess how many stairs there are in a stadium built in 1912?? Yeah, that was a lot and I may have been bringing up the rear of the tour, but I got through the whole thing and still had energy left for Quincy market. AND…I left Dan in the hotel again so I could run to the outlet mall. Of course the 2 stores I wanted to check out were on opposite ends, but I did it. Yes, I’m proud of myself.

Today we were at Mass General really early for my CT scan. Luckily the doctor took us a couple of hours early or we would still be in the car. Nothing exciting happened with the visit. Essentially she says I can come off the steroids from her perspective, but she wants me to consult with an endocrinologist before I fully wean as the body can stop making cortisol when you are on steroids for a long time. That seems fair. She’s also switching me to a different form of cellcept which is what is replacing the steroid as we suspect some of my GI issues are from the cellcept since it hasn’t stopped even with my break in treatment. Hopefully my breathing will continue to improve and I’ll start weaning off that too. I’d like to keep chipping away at these side effects and have to take less medicine. Lately it seems like I keep having to take more to counteract another med. I feel like the old lady who swallowed the fly.

My oncologist was out of the office today and they only had authorization to restart my medicine at a lower dose so I’m waiting for tomorrow to see if I can start at the full dose. I’m not giving up that fight.