Pizza!!

I’ve reached a critical milestone. Pizza tastes good again!! Woot woot!! I am so thankful to be able to enjoy that cheesy goodness. Simple pleasures.

Today was also chemo day which went well. I really like boring.

Yesterday Dan and I met with an orthopedic oncologist to get a recommendation regarding my left hip which has been causing me significant pain. I can’t just be good, right? The rest of me has been feeling fairly normal if you can ignore the oxygen lines and my lack of hair. But, the hip is making it difficult to move. The doctor recommended giving my hip another couple of weeks to see if the pain improves with more chemo. If not, I’m looking at a significant surgery. No fun. So my plan is to limit my walking as much as possible to give my hip the best chance of improving. 

So, there’s my weekly update. Onward!

A Good Day

I’ve had a lot of scans over the last week…echocardiogram, bone scan and a CT. The good news and the bad news is that results are usually posted within a couple of hours of the scan to the patient portal. And, of course I read them but have no idea what I’m looking at. Plus, I don’t want to be that patient so I don’t call and freak out. I wait patiently until my next appointment. Ha! Patiently… that’s funny.

The PA came in all smiles today saying my scans look great. But, how could that be? My feet show deterioration. Except that’s not cancer, that’s arthritis. Oh. But my bladder and kidneys lite up. Yes, she said, because that is where the dye settles. Oh. But my bones increased in density. Yes, because that’s what happens when the chemo is working. And the tumor shrinkage didn’t seem that significant. She said she considers it very significant especially considering they scanned at 6 weeks when they’d normally wait until 12.

Even the oncologist smiled and that’s not normal for her. She smiled, said everything looks good and sent me off to chemo early.

So, I don’t have cancer in my feet, my bladder or my kidneys and my bones are improving. And my heart looks good. I guess it is a good thing that I’m a patient because I really stink at reading results.

Today was a good day.

Chemo Break

Dan and I headed to Roswell early this morning to meet with my oncology team. I had lots of questions that I’m afraid resulted in more appointments!! I’m now going for an echocardiogram after asking about my high heart rate.  I will be seeing a PT to understand how to use a walker properly as I’m stumbling all over myself. I’m concerned about progression so now I’m waiting on CT and bone scans. And, they’re testing my thyroid too. Be careful what you ask for!!

My team states that my most recent chest X-ray shows improvement over the last one and my tumor markers continue to go down which is fantastic, but when will I start to feel that improvement? Unfortunately I feel like I’m more dependent on oxygen that I was just a few weeks ago. Frustrating. I do have moments where I feel mostly normal and then I see myself in the mirror. Yikes!

And, the cherry on top is no chemo today as they want me to finish the antibiotics I started last week. Boo. But, this time I accepted it as last week I fought it and ended up back in the hospital. Lesson learned.

They now think the fever I ended up with each of the last two weeks is chemo related. As are my swollen feet. 

So now I’m on oxygen, bald (finally shaved it last night), using a walker and I should be wearing compression socks. I am really rocking my 40s!! I can’t wait to see what comes next. Hopefully only improvement from here.

Defeat

Unfortunately I ended up with another fever which landed me in the Roswell day hospital Wednesday afternoon. There was talk of admitting me, but today was prom so I fought back. They agreed to give me a dose of IV antibiotics as it seems I was under treated last week for pneumonia and a blood transfusion plus a promise that I would call if I had any new or worsening symptoms.

When I went to bed last night, I thought I’d be calling after taking prom pics tonight, but now I think I’ve turned a corner. If I wake up good tomorrow, I’m hoping that means I’m out of the woods.

So, why defeat? Well…I applied for a handicap parking pass today because there are times I could use it, but I’ve committed to myself that I will only use it when truly needed. Boo.

For now, I’ll focus on being present tonight.

A Storm is Brewing

Last week I was upset about a potential 2-week chemo break and it hit the fan yesterday. Here’s the deal…my left hip is where all this nonsense started. It was quite painful until radiation a couple of months ago. I stopped taking pain meds until 2 weeks ago when it started bothering me again. An X-ray last week didn’t show much so I went for an MRI on Saturday which showed disease, but no fracture. Unfortunately they still are very concerned about my risk of fracture so I was told no significant walking and when I do walk, I need to use a walker or crutches. Seriously. I asked for how long and was told until chemo has time to work. They also said I could have surgery to stabilize the hip, but that would mean a chemo break and chemo is the priority. But, no chemo for 2 weeks because of pneumonia when I’m back to feeling good? Um, no. So here I sit in the chemo chair after lab work which looks good. Boom!! I AM THE STORM. 

The other problem with using a walker or crutches is that I also have an oxygen tank when I leave the house which means now I can’t leave the house alone. That is really frustrating. I love my people, but I also value my alone time. A lot. Me without sufficient alone time isn’t good for anyone. So we need to keep treatment moving so that I can have my freedom back. I’m also considering asking for more smaller tanks so that I can put them in a backpack. I won’t be asking for permission.

Saga

I really need a break. Every time I turn around, something isn’t going as expected.  I want to get back to boring.

Yesterday I spiked a high fever and landed in the ER thanks to Aunt Debbie for getting me there so Dan could attend Tyler’s academy graduation and to Uncle Tom for feeding the boys. It was an unexpected night and they jumped to our rescue. After a bunch of tests, I was diagnosed with pneumonia (again!) and was released in the wee hours of the morning. I woke up fever free so hopefully the antibiotics are working. Unfortunately this is going to mean a 2 week treatment break. I am not pleased.

Prior to yesterday, things were good. Chemo went well on Tuesday, although really long due to confusion with my orders. I continue to be reminded that I have awesome family and friends who are family. We’re five months into this journey and the love keeps coming. It is wonderful hearing from everyone. 

Over the weekend we spent time with ‘old’ friends and they’ve given me a new mantra:

I think it fits. I am the storm!! I have to remember that on days like today where it is easy to get stuck in my own head.

My hair is very sparse and I should shave what remains, but I have a little left in front that I pull down under my caps to show so I’ve waited. It is hard knowing that I won’t have hair indefinitely.

Time to pull myself back up and trudge forward. This is a bump in the road, but the road continues on so I am grateful.