Self-Advocate

Nobody else can advocate for you like you. And that’s been the name of the game this week.

Until now, my bloodwork always looked good on chemo day and there has never been a question that I’d get a full dose. Unfortunately when I was in hospital #1, my white blood cell count tanked and they started talking about a chemo reduction to 75% which made me angry. They had all sorts of folks talking to me about how a reduction is protocol and the package insert even says so (according to the pharmacist who called). Um, no. I’m not ok with reducing my chemo dose because of a run of the flu. A one time event. If my bloodwork on chemo day is an issue or if it happens again, then we’ll talk. But, not yet. 

So yesterday was chemo day and I pled my case to my oncologist. And won. I got my full dose and am feeling good. I’m going to will my bloodwork to look good for my dose next week too and leave this situation in the rear view mirror. Package insert…be proud of me for not telling the pharmacist that we don’t need her if all we’re going to do is read the package insert. Seriously. I came really close.

Today was my appointment with the ENT for my nosebleeds. Essentially I had a nosebleed from last Wednesday through Sunday afternoon. It is not pleasant and rather gross. Once again, it was time to advocate. I’m done with seaweed up my nose and want actual medicine. So, he’s got a compounding pharmacy making up an acid spray and if that doesn’t help, we’ll be doing a light cauterization on one side at a time. Finally hope for relief!

My strength is returning with my attitude. I see the pulmonologist on May 2nd. Watch out!

Home

I’m hoping my discharge from the hospital today sticks this time. I spent 4 nights and 5 days at Mercy hospital and the same at Roswell with 1 day at home in between. 10 days in the hospital is enough!! My body is sore from too much time in bed and the recliner. I’m happy to be home where I have a little more freedom. 

I won’t be climbing the stairs in the house which means I won’t be sleeping in my own bed, but I will be sleeping in a bed in my house. I’ll take it!

Unfortunately, I can’t say the issue with my oxygen tanking when I move has been fixed. It is still happening, but they really weren’t doing anything besides antibiotics and steroids in the hospital so I can do that at home. They’re not sure what is causing it and it’s probably a combination of things including recovery from the flu. Hopefully I’ll see improvement in time and will hope I don’t become a pest to Dan and Ryan as I ask for help.

I appreciate all those who reached out to check in. We’re hanging in there!

Oh, I should add that I had a nice view from my room at Roswell and can’t complain about the food…good stuff!

See the lake?

Boomerang

I want to know if there is a prize for getting admitted to two different hospitals within a week?? Unfortunately I was still struggling to breathe when I got home from Mercy Hospital on Thursday. It’s never a good sign when I don’t get off the couch.

So Dan called Roswell this morning. They wanted an ambulance to transport me to an ER. Um, no. I will be arriving at the hospital in a GMC Acadia. And I won’t be going to an ER this time. Can you believe we had to fight to get Roswell to take me? They eventually did and here I am. Hopefully not for long. They’ve already started steroids which I asked for over a week ago. 

I’m also getting a bunch of other stuff including calcium and blood. This is where I need to be.  

Hopefully Dan will make his way back this evening with some food as I finally have an appetite again.

I just want to be normal again. I want to be excited that Tyler is going to prom tonight and Ryan is at a track meet. I’d like to attend a track meet like a normal mom. Hopefully soon.

Hospital

Unfortunately, as things go with me, I’ve landed myself in the hospital. It seems I brought influenza A back with me from DC despite efforts not to like wearing a mask on the metro. I knew I wasn’t feeling well on Easter and things just went downhill from there until a week later when I was admitted.

Today is Thursday so day 5 and I hope to be discharged today.

Mom & dad have been here since Friday taking care of me and Ryan. Dan has been in Colorado Springs with Tyler at Junior Olympics. He’ll be home today.

I’m still not right, but I can’t stay here anymore. My whole body hurts from coughing and being in this bed. I’m looking forward to my own bed, my couch and choice of food. Hopefully today is the day!

Scans

Today was a very emotional day. I had a CT scan yesterday and the results came back stable which was what we expected. I had a bone scan today and freaked out when I saw the results as it looked like I’ve had a significant increase in activity. How could that happen with decreasing tumor markers, good bloodwork and generally feeling decent??  I was a complete mess. Being able to access results on the patient portal is good and bad. Luckily my doctor responded quickly and calmed me down. 

I have a cold right now which he knew about as I asked for a preventative antibiotic trying to avoid pneumonia and a hospitalization. He’s confident that the brightness the radiologist saw on the scan is the result of my immune system fighting the cold. He said he measured the lesions and they have not changed since the August scan, therefore, I’m stable. Phew!! Lesson learned. The freak out can wait until the oncologist agrees it is time to freak. Now is not that time.

So now I’m going to be kind to myself, take the antibiotics that I did get prescribed and nap. And eat the leftover Easter candy.