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!!

TMI x2

So I discussed week 3 with my team yesterday and we’re going to try a couple things:

1. I’m starting mirilax during weeks 1 & 2 trying to avoid the constipation that happens after my infusions. Usually I see that as sweet relief after the horrors of week 3, but I understand that constipation can lead to diarrhea so we’ll give that a try. 

2. I can take a lot more of the preventative meds. I now have 2 and can take up to 8 of each. I haven’t taken more than 8 total in one day. We’ll see.

3. I did not discuss this with my doctor, but I believe I’m responsible for some of the stomach issues I ended up with during my unexpected week 4 (they pushed my chemo after moving it for vacation so I got extra time off). I went out to a work dinner and finally got a lobster roll. I also had blue cheese on my salad. It was probably too soon for that, but I really enjoyed it. Then I went out with a couple of girlfriends and had chicken parm. Once again, I enjoyed my meal and enjoyed my time with friends more. Oh, and I had ice cream…lots and lots of ice cream.  I love to eat. And see people. So eating with good people is awesome.

I’m also happy to report that my oncologist is on the same page as I am regarding my current line of treatment. There is another chemo available in another category, but he doesn’t want me to abandon this chemo until it stops working. I’m good with that even though it means I’ll stay on steroids and have no hope of my lungs improving. The longer I’m on a line of treatment the better. I know this chemo will eventually stop working so we’ll pick that hope back up at that time.

Wish me luck this weekend… we’re headed to Pittsburgh for another baseball tournament and I’ve got my eye on pizza and a milkshake. And all the yummy food at Too Golf. (Tyler will be home taking care of Lucy…he will be eating my prepped food from the freezer…not as much fun).

TMI

This post is going to share way too much so be warned. 

My current chemo cycle is three weeks with infusions on weeks 1 and 2 with a ‘break’ during week 3. The 3rd week of my chemo cycle is always the most difficult, but this last week was especially horrendous. I seriously couldn’t understand how someone would refuse treatment, but I sure do now!! 

Usually I have 2-3 days of GI issues which I can deal with using preventative medication. For some reason, this week lasted 4 days and I’m still not right on day 5. Cramping, pain, diarrhea…I couldn’t eat or drink anything without losing it. Even water was an issue. So sick. I know I lost at least 5 pounds. Hopefully I can start eating again soon to gain that back.

I reached out to my doctor multiple times which I don’t normally do. They adjusted when I take my preventative medication and then changed the medication yesterday. I’m not sure the change helped or if it was just the time for improvement, but I was able to somewhat function today with 2 significant naps. Hopefully I can handle the grocery store tomorrow as that wasn’t happening today.

Let’s not do that again.

Steroid Addiction

Unfortunately my wean off steroids failed. Sunday, July 16 was my first steroid-free day and I was so excited. I did well for a few days, but the following weekend we were away for a baseball tournament and I was struggling with walking to the field on flat ground. Hmmm, seems odd. Then I developed a low-grade fever which I attributed to pain I was having in my jaw which can be a side effect of the chemo I’m on. When I got home, I struggled even more as I needed to climbed stairs to go to bed so I called my doctor. They didn’t seem too concerned and had me come in for my regular pre-chemo appointment the next day where I was put back on steroids :( Unfortunately chemo was also delayed as they didn’t want to tank me any further than I already was, but I didn’t end up in the hospital.

On Thursday I went to the pulmonologist who scolded me for stopping steroids early. I didn’t realize I had. He had given me a step down schedule, which I followed. But, I guess he expected me to stay on the lowest dose until I saw him again. Oops. But, I’m glad I didn’t because this episode was resolved before my trip to Bethany Beach. If I stopped my steroids after seeing him, I could have had a problem at the beach.

Now my doctors are talking to see if there is a non-immunotherapy line of treatment they can try. The pulmonologist is convinced the inflammation in my lungs is still treatment related. If they can’t identify another treatment, I’ll stay on a low dose of steroids long-term. 

The good news is that there is an antibiotic you take with steroids and that has resolved my fever and ear pain. And I’m feeling better on the steroids so I’m in Bethany Beach enjoying myself while crashing Sara’s vacation. Toes in the sand along with a little boardwalk shopping is just what I need.