It Doesn’t Count

I’ve really been looking forward to saying I haven’t been hospitalized in over a year. The last time was April 2024 so I’m getting close… except that I spent a few hours there today getting fluids, but I wasn’t admitted so it doesn’t count, right?

Unfortunately my side effects are getting worse. I essentially lost all of last weekend and wasn’t recovering like I usually do so off to Roswell we went. I am feeling significantly better now and hope that continues through the night.

Now I’m worried about what my team is going to say. I really don’t want a dose reduction, but I can’t keep having those really rough days. There is one more medicine they mentioned to counteract the stomach issues so I’m holding out hope. The last one we tried with the injections didn’t touch the issue. But, I’m not waving the white flag just yet.

TMI

So the GI issues are getting worse and are now consistent. I’m down for 2 days, hardly able to get off the couch and then some recovery time as I build my energy back up. 

Everything that goes in goes out in a really bad way!! But I keep putting stuff in trying to stay hydrated with some sort of nutrients in my body. I’ve experimented in many ways and it doesn’t seem to matter even if all I have is water and a very bland diet, it will exit badly.

My 2 current prescriptions are not making a dent and I am still against a reduction in my chemo. Luckily it is only 2 really bad days every 3 weeks. But those 2 days are so bad! I’ve started to understand some refuse treatment. Don’t ask me what I want to do on those days.

I spoke to my doctor who gave me a choice of a new med that I would have to inject 3 times each of those 2 days or an opioid which I rejected as I’m working. Wish me luck. My 2 bad days should start Friday which is when the new med arrives. 

I’ve also discovered that it doesn’t matter when I eat ice cream or cheesecake during my cycle…it will always end badly so this week I’ll be trying lactaid as life without ice cream is very sad.

I am not giving up on this line of treatment!! But I am determined to find a way to manage it better. 

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!