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.

Treatment, nosebleeds and popcorn balls!

Today was week 2 of my 3 week cycle of 2 weeks on and 1 week off. Infusion day is down to a science. The nurses know I work while in the chair so we have a sort of sign language so we stay on the same page to get me out as soon as possible. The biggest thing I need to do is give them my name and date of birth when they’re hanging the chemo bag. I like it. 

Unfortunately this chemo causes GI unrest that starts just before my 2nd infusion and gets worse on my off week. It is bad. Good thing I’m slow when I walk so those I care about are usually ahead of me. Yikes! Sorry for sharing too much. I really can’t complain if that is the worst of it.

Almost 2 weeks ago I went to see an ENT about my nose. I’ve been to the ER twice for nosebleeds that I couldn’t get under control and really don’t want that to happen again so I got off my rear end and made an appointment. Another doctor is the last thing I want, but it wasn’t getting better in its own. The doctor wants to take a gentle approach so he put me on a nasal emollient which is an oil I use 2-3 times each day. I’d say the bleeding is improved, but still there. And now I smell like an incense store which gives me a headache. I go to see him again this week and am hoping we can try an antibiotic or topical hormonal solution to move away from the oil. Oh, he also recommended taping a toothpick to my nasal cannula to keep the prongs away from my septum which is where the blood vessels run. That’s attractive especially when the oil drip on the toothpick and then I get a nosebleed. Needless to say, I have to change that contraption often.

Tonight I decided I wanted popcorn balls so I put all my tools to use from Tupperware measuring cups, big bowl and popcorn popper (not recommended), to my orange Le Creuset pot and finally my pampered chef spatulas. Thankfully I mentioned my plan to mom who gave me some tips…in addition to putting a couple tablespoons of water into the caramel, also add a half stick of butter. And it is easier to shape the popcorn with wet hands. Thanks mom!! I’m looking forward to my treat. I hope Dan and Ryan will eat some as I will eat them all if left to my own devices.

Tattoo

I’m still laughing about this so I need to write it down.

Tyler called a couple of weeks ago and floated the idea of a tattoo by me. He probably thought I was going to object, but I told him it was something I wanted to do in college as well. I never got the nerve up to actually do it so he suggested that we get matching breast cancer ribbon tattoos. 

After the call, I texted him the metastatic breast cancer ribbon for consideration.

The response I got back was that it was the worst color combination ever and it “looks like it would taste sour.” Bah ha ha!! He’s ruined the ribbon for me as I can’t unsee that. It totally does look like sour candy.

Then he texted me this pic:

He is so right. And now I think the idea of mother-son tattoos has moved on which is probably best…I have 7 medical tattoos that really hurt!