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!

MRI Results & a Pumpkin Pot

I love that I can see my scan results within hours of the scan, but it is really necessary to wait for the doctor to interpret them. My report had some really big words last week that I was worried about, but all it really meant was stable and no additional treatment recommended for my brain and skull.  I’ll take it!! They’ll scan again in 3 months. 

Last week was also week 2 of my chemo cycle so this week should be my worst side effect week, even though it is my week off treatment. But so far, so good…maybe I’ll get a break and be able to have a normal week? I sure hope so.  Or, maybe it is because I visited mom & dad on Friday so my body is confused about where I am? 

In food news, mom & I checked out the Le Creuset outlet in Lake George. I think she was shocked that I bought a pumpkin pot, but it makes me smile and life is too short not to smile.

Isn’t it beautiful? I was going to make chocolate bread today in it. And then decided to make gumbo. But, in the end, I didn’t break in the pot. Yet. I think I will try that chocolate bread… in my pumpkin pot!

I did make the gumbo. But, the purple pot did the trick. I still love that pot too, even though she’s been around a while. Everyone should have a purple pot.

Someday, I’m going to make a huge meal using all the pretty pots. Or, maybe it will be a day of pretty pots with breakfast, lunch and dinner each made in a different pot. Simple pleasures. 

Food

There isn’t a whole lot going on so I’ve started trying new recipes and taking pictures of my food. Yep, that’s where we’re at. Pictures of food. I’ve discovered I can work and cook like a normal person so that’s how I’m spending my time.

This one was pretty, but somewhat plain.

So was this…I guess I need to add more spices! Or stick to creamy garlic chicken as we all like that. I can’t remember if this was Marry Me Chicken or Cajun Chicken. The Cajun chicken was good. I’ve tried a lot of one skillet chicken meals lately!

The bread was surprisingly good.

 

The Dutch baby is on our regular breakfast rotation, but I decided to try it in a different pan… it worked!

Waffles are a regular in our house too. Covering them in chocolate chips and whipped cream is not, but sleepovers have different rules.

 

Tonight was braised chicken thighs over rice. Poor Ryan lamented that he likes it when we just have Italian sausage. I guess I’ll throw him a bone next weekend and make sauce. Maybe he should have eaten the lasagna last night!

The good news is we’re eating well! Or at least Dan and I are.

Long day

I left the house before 8am today and didn’t get home until after 5:30pm. Long day!! But, a good day.

This line of treatment is 2 weeks on with 1 week off. Today was my 2nd round of chemo for this cycle and it went smoothly this morning. I’ll have my off week next week which I’m not looking forward to as that seems to be when the GI issues really hit me. That is no fun. I’m going to try a different medicine combination as I’m still looking for the magic solution.

After chemo, I had a few hours before I needed to leave for my pulmonology appointment so I decided to go to the office. It was nice to see people in person. I need to find a way to do that without getting stuck there all day as the portable oxygen concentrator isn’t the best. I start to feel light headed after a while, but I was on real oxygen at chemo and again with the pulmonologist so I knew I’d be ok for a few hours in between.

My appointment with the pulmonologist was also uneventful. He is pleased with the improvement he’s seeing on my scan, happy I’m down to 2 liters of oxygen and that I didn’t have a decline when I stepped the steroids down from 40mg to 20mg a couple weeks ago. He wants me to step down to 10mg in 2 weeks and then 5mg for four weeks to keep this wean really slow. Ugh. 5mg wasn’t part of the original plan. I guess that means I’ll keep eating, gaining weight and puffing my cheeks out.

I wanted more from that appointment, but he told me that I need to be patient. I’m still really struggling with inclines and stairs. He says the improvement I’m looking for will come. So, I decided to give him a bit of a hard time. I was nice about, but I asked if he thought I was fooling myself into thinking I can stick around for a long time after seeing my scan. He said it is realistic as I am stable. I then asked if it was realistic to climb bald mountain on Labor Day weekend which is 1 mile up. He said we’d make that the goal. 

He agreed I need to keep moving. I can’t risk a fall so that probably means malls for now. Let me know if anyone wants to shop!! It is a medical need :)

CT Scan

I went for a CT scan last Thursday evening, which was early as my tumor markers went up 8 points at my last appointment. My doctor says that isn’t significant and tumor markers are only a guideline, but he could see I was concerned so he moved my scan up.

The scan results were positive, although I wanted it to be more positive as patience is not a virtue I possess. I was hoping for a reduction in disease, but I need to be happy with stable. Stable is good.

There is improvement in my lungs which is very good. I’m also pleased to hear that there is more improvement needed because I am still very much dependent on oxygen and was feeling like I should better than I am. He showed me the scan so I could see the improvement and that there were still opacities ready for improvement. Once again…patience!! I am down to 2 liters so that is progress. He also reminded me that previously we weren’t sure if it was disease or pneumonitis causing the lung issues and now we know it’s pneumonitis so we can focus on that. 

He also confirmed that sclerotic, which was in my scan report, means hardening of the bones where there was disease. So, my bones have scar tissue which means healing, right?  A year ago I was in significant pain and taking pain medication 24/7. Today, I can’t remember the last time I took anything for pain. That’s improvement.

He also said that my bloodwork shows that my organs are functioning normally. So overall, I’m ok. Even though my tumor markers went up again by 7 points. The scan is more telling as is how I feel which is generally good.

4 Good Days

Well, I made it 4 days into 2024 until I landed in the ER on the 5th with another crazy nosebleed!!  I guess all the things I did to keep moisturized wasn’t enough so I’ll be calling an ENT on Monday. That cannot happen again. This time it was a 5.5 hour bleed that did eventually stop with huge clots that were incredibly uncomfortable. Guess when it stopped?? As we were waiting to get called back to a room in the ER. Then the rest of the time was spent trying to get me to blow out or cough out the clots. All that did was make me sore.

I did manage to convince them again that a rhino rocket wasn’t necessary. 

The clots came out this morning with a nice hot shower. So gross. But, the good news is that I didn’t start bleeding again and now I can breathe through my nose again which should make for a better night of sleep.

Let’s hope the ENT has some magic.