Pulmonology

I went for a pulmonology function test today and all I was told is that I did better than last time so that’s good news.

Then I met with my new pulmonologist and I’m not happy. I guess it’s normal for a new doctor to want to try the same old tricks, but I’m sick of those tricks. I want to try something new. But, for now I’ll play the game. 

He wants me to stop using the albuterol inhaler every 4-6 hours even though that seems to be helping and go back to the steroid inhaler twice per day which never worked. He says there is long acting albuterol in the steroid inhaler so it should help. Hmmm…

And, he wants me to wean off steroids again. We tried that a couple of months ago and it was a complete fail. I’d really like to wait until we’re out of cold & flu season, but no. Here we go. I’m already being super careful about exposure so I’m not sure what else I can do to protect myself. Maybe no more grocery shopping in person? I cannot get sick again. It takes so long to recover.

I’m a bit cranky today and it isn’t all the pulmonologist. I think I just overdid it. Thank goodness tomorrow is Friday so I can be a slug this weekend. Again. I miss doing things and seeing people.

Scan Day

Things have been rough for a while. I get one little cold and it knocks me down for weeks. I was back on oxygen, delayed treatment, increased steroids… and still didn’t feel good. Just within the last couple of days, I feel like I’m improving from a sick perspective. Unfortunately that lined up with my side effect week which is truly horrendous. At least it only lasted a couple days this round. But during those days, I lose everything I eat and drink leaving me quite weak. My doctor wants to reduce my chemo to 75%, but I’m not going there. How can less medicine be as effective? And treatment is ‘just’ keeping me stable. I can handle 2 days of hell.

My hope is that next round will be better if I can keep myself healthy which means hibernating and wearing a mask when I do go out. It is not fun, but better than weeks of not being able to breathe. See you all in May!!

Today was my quarterly scan day. I won’t get the CT results until next week, but the bone scan came back stable so I have no reason to think the CT scan won’t be similar. What I hate is the 3 hours between the injection and the bone scan, but I was able to attend 2 conference calls for work and treated myself to the best omelette. I could taste it and ate it all which is the most I’ve eaten at once in a while. I truly enjoyed that omelette. That might need to become part of my regular routine.

In other good news, we were selected for a retreat through Little Pink Houses of Hope with other families going through this nonsense. We’ll be spending a week on Carolina Beach and I’m so excited. Maybe I am back to a place where I can walk the beach for a bit? Tyler just started a new job so he probably won’t be able to go, but there should be other teen boys that Ryan may be able to connect with. And I really hope there are other husbands for Dan to commiserate with.

All in all, I can’t complain. I’m still working, cooking and watching lots of bad TV. 

Two Years

It was two years ago today that I received the call confirming that cancer was everywhere. Two years of this nonsense.

I’m grateful to still be here. Overall I guess I’d say I’m in a better place…less pain.  Life is very different than it was in 2022. And I’ve come to accept that this is now our normal. I’m slower, can’t do all I used to do, I don’t look the same, I have doctor fatigue. And the future is uncertain. But we keep on plugging.

I’m blessed to have the best husband ever. Not sure how this would be possible without him by my side. He keeps me rational and focused on tomorrow, making sure I get to do all the things. We do what we can do when we can do it. And, if there is a day we can’t, we don’t. Somehow it all works out.

Two years. Hoping for many more.

One Year

I had chemo yesterday which was also my 1 year anniversary on the same line of treatment. I find that exciting after blowing through 3 lines of treatment before starting this one. Mom went with me so it was the first time I didn’t work from the chemo chair and I realized just how fast it goes when I’m actively doing something. Things seemed really slow yesterday!! Poor mom.

I also met with the PA instead of the doctor and I really like her. I told her I asked the doctor about cutting out or radiating my liver tumor and he said they typically don’t do that for metastatic disease, but he didn’t explain why. She said he is pursuing it for me and has engaged the radiation team, but that they normally wouldn’t do that unless I was in pain, which I am not. She then said it would be like pulling the weeds you can see in your garden. You know there is more you can’t see. Hmmm. Maybe I didn’t know that. But it does make sense although it is really sobering. At least know I understand the why.

My wean off steroids failed so I put myself back on, with the doctors blessing, before landing in the hospital. Now I need to let it build back up as I’m still struggling with breathing with any activity. No fun. At least I’m home. A year ago I wouldn’t have known what to do until it was too late.

There’s nothing much else going on except a bird in the oven and yummy sides. I think I’m hungry!

Long Time

I didn’t realize how long it had been since I updated the blog. I guess that means things have been boring which is good, right?

And things have been good except for a pesky cold that I think I’ve finally kicked with the help of a steroid boost. I’ve started a slow taper back to the daily 10mg dose for my lungs, which are still not behaving. Hopefully I’ll stop needing to eat all the time and my cheeks will start to shrink.

I had scans last week which showed I’m still stable. No reduction in size of the liver lesion, but no growth either. I asked the oncologist if we can radiate or cut the disease out of my liver as it seems to be the only area of concern with disease. He said they don’t normally do that for metastatic disease and there is the risk of bleeding with pain, but he’s going to present the possibility to the radiation department to see if I’m a candidate. I am a pushy patient!

My spine also lite up, but that could mean disease or the bone is healing/creating scar tissue. I choose to believe it is healing as the rest of my bones have healed and I’m not in pain. No other bones show activity. My oncologist thinks that healing is a reasonable assumption.

That leaves my lungs. I am off oxygen during the day which goes well most of the time. I still struggle with any sort of incline if I forget to go slow. I see the pulmonologist next week so we’ll see if he has any new ideas besides waiting for my current treatment to stop working on the disease so we can try something hoping to keep the disease under control AND not have the lung side effects. My oncologist seems to think I need to reset my expectations and see this as the new normal. I’m not ready to accept that just yet. I need to be able to walk and talk at the same time.

Other than that, I’m trying my best to keep life normal. I’m working full time and cooking a lot. I’m looking forward to turkey, stuffing and mashed potatoes!! Oh, and the firetruck parade! 

Grateful

My CT scan from last week still hasn’t been read by a radiologist yet, but I saw my oncologist today and he backed up what the pulmonologist said. He came into the room smiling.

He showed me the scan from June next to the scan from last week. He said there are 2 lesions they’re watching in my liver. He showed me one of them and measured it. In June, it was 1.7 and now it is 1.4. Not a huge reduction, but I’m pleased with that.

He said there could still be microscopic disease in my bones as bones take time to respond, but the scans also show scar tissue being created so it is tough to differentiate that from disease. But, I haven’t been in pain for a long time indicating good things are happening. Hopefully over time we’ll see the activity in my bones ease.

My oncologist told me today that he’s not convinced that there is disease in my lungs. He said it could all be pneumonitis. That would be good news, but it makes me fear cold & flu season even more. I think I need to be vigilant about masking and staying away from places with lots of people. One cold could see me back.

Oh, and he also confirmed there is no disease in my brain. All my weirdness is just who I am.

Then he suggested I might want to consider a dose reduction to ease the stomach issues. No way!! I’m not risking this progress. This last round was nowhere near as bad as the round before. Let’s hope that is because I stayed ahead of it with meds so I can repeat that. I’m afraid it was the extra week off chemo for vacation.

Or, it could have been my shopping trip into the village last Thursday. One of the shop keepers told me I needed to manifest cancer going away at 8:08 on August 8th. She recommended picturing myself walking toward the ocean with a box. When I get to the water, take the camera from everywhere in my body and put it in the box. Then set the box adrift, without until it is no longer visible. Ha ha!! This is why I need to start wearing a wig when I’m out to stay incognito.

Overall, it was a good day. I did wake up crabby so I wore my sparkly shoes and a nice outfit. It worked!! Fake it until you make it.

Woot woot!

I am so excited…I had a bone scan and a CT scan yesterday with an appointment with the pulmonologist this morning. The bone scan reads stable and the CT scan results aren’t published yet, but the pulmonologist said my lungs are significantly improved. There is now only inflammation in the bottom. Yay!

He tested my oxygen levels walking around while not on oxygen and I did well so he took me off oxygen during the day while I’m doing regular activities. I’ve been home for hours now and it is so weird. I keep trying to grab my lines and step over them, but they aren’t there!  My ears are so happy.

Unfortunately supplemental oxygen is like a drug and I’m feeling a little wonky. I may allow myself to wear it for an hour to help my body get used to this, but overall, this is fantastic.

He also reduced my steroids to 10mg which means I don’t have to take the antibiotic with it. And, he’s setting me up for a sleep test to see if I can ditch the oxygen overnight as well.

Now I need to make sure I don’t get sick which probably means I need to wear a mask since I won’t have my own air supply.  A cold could really set me back.

I go see my oncologist Tuesday morning and I’m hoping for more good news coming from that CT scan. 

Oh, and the best news…I’m under doctors orders to get out there hiking again.

Check this out… I went bald in public!!