Good News

My bloodwork came back good today so I can take my medicine again!! I shouldn’t be as excited as I am. I was also told my liver enzymes continue to come down. Woot woot!

And, I don’t have another medical appointment until March 21st. 3 whole weeks!! I am stunned. We haven’t gone 1 week without an appointment of some sort since this all started.

The bad news is that I can’t remember where I put the decor that should go on the entertainment center so it is about to be March with Christmas decorations still on display. Oh well?? At least I’ve stopped turning them on.

Ups and Downs

This was a tough week inside my own head after my follow up with my medical oncologist on Tuesday. So, I’m forcing myself to focus on the good stuff:

• Overall, I’m feeling good and functioning.
• Radiation on my hip finished yesterday and I’m not experiencing side effects.
• My tumor markers went down significantly and this is a very good sign although we won’t have confirmation that I’m responding to treatment until after the first couple of scans which means 6 months (ugh).
• I am in more pain than I was a couple of weeks ago and that could be the bones starting to heal. She used a word that starts with R that I can’t remember. I was worried it meant treatment wasn’t working. She explained that bones tend to light up on scans with this medicine because of good activity. 

Here’s the stuff I’m not happy about:

• My white blood cell counts are down so I’m taking a break from what I consider my main treatment, kisqali/ribociclib. I’ll go back Tuesday for more bloodwork and can hopefully start again.
• I’m on 600mg so if this happens again after my next round, she’s going to lower me to 400mg which I’m told is just as effective. But, how can it be? My doctor and my case nurse from my insurance group both assure me it is.

This week we also had a tough conversation about pain medicine as I’ve been resistant to taking it mainly because I’m not in that much pain. Why put more in my body than necessary? She thought I was concerned about addiction, but my other concern is my cognitive function. I want to stay sharp. After being assured I’d be ok, this week I’m taking ibuprofen in the morning, again in the afternoon and Tramadol at night. And I feel good. Almost too good? How will I know if there is pain I need to be worried about? See the things I find to worry about?

The support from family and friends has been wonderful. I appreciate the messages with thoughts & prayers, the cards, and more. I smile thinking about our support system and appreciate each and every one of you.

We had quite the ice storm in Buffalo this week. Dan’s been outside chipping away at the ice in the driveway and taking Lucy out to make sure I don’t fall. There isn’t a better guy out there. He’s also doing his best to address my worries and move us on to something else. God was looking out for me when he put Dan on my path.

Hair

I’ve hemmed and hawed about getting a wig this time around. I had 2 last time, but they were really uncomfortable so I didn’t wear them. But, seeing the huge bald spot on the top of my head was depressing. And it made me feel like everyone could tell there was something wrong with me. It made me feel sick even though I actually feel fairly normal. So, with a push from a friend, I educated myself of wig caps and ordered one. 

Unfortunately, it looked nothing like the picture when it came in. The boys laughed and Ryan said it looks old fashioned. Sigh. I couldn’t disagree.

It was so much hair and looked like a round basketball on my head. It definitely aged me.

This is how it was supposed to look. I wasn’t expecting it to look this good on me, but it was reviewed really well so I did hope it would be wearable.

The good news it that it is comfortable and not itchy so I thought it might be worth a little more effort.  I left the house today to find wig-friendly product hoping I’d be able to smoosh it down and make it less fluffy. The first place I went was closed. But, I found a salon that I had no idea existed just down the road with a stylist who specializes in cutting wigs and she said she’d help me today…on a Sunday!  

She took a really long time thinning the wig, showing me how to style it and answered all my wiggy questions. I think it looks much better. The pics of the wig this morning made it look better, but I don’t think this pic does it justice. It really is SO much better.

Maybe I’ll wear pants tomorrow with a button and consider putting make-up on. Maybe.

Tattoos

Next week my hip will be getting 5 rounds of radiation to reduce the risk of fracture and a side benefit is pain reduction although the hip hasn’t been bothering me much. My hip has the most ‘extensive’ disease and they are worried about it because it is a major joint. I’m beginning to hate the word ‘extensive.’ In preparation for radiation, I was at Roswell yesterday for mapping which means getting tattoos so that they can aim the radiation in the same place each time. I can now claim 7 tattoos, if I count those from my first round of radiation 12 years ago. Nobody needs to know they are only dots and that I found it very painful.

Another major milestone was completing my first cycle of kisqali/ribociclib on Monday. I take this medication (3 pills) for 21 days and then get a 7 day break. Check out the box:

It keeps me on track, but I am feeling a little lost this week without it. I am still taking the other pill, but I go to bed feeling like I’m forgetting something.

I have so many prescriptions in my cabinet. Luckily I haven’t needed a lot of it…anti-nausea, anti-diarrhea, 2 different pain meds, antacid…so much stuff!! And, they’ve offered me even more that I declined…anxiety, marijuana…so surreal. I’m taking as little as possible.

So far, I’m still not experiencing major side effects. My stomach is a little wonky, but I’m trying different things to see if I can make that better.

I am appreciative of those reaching out, offering support, sending cards, etc. I think the prayers and positive vibes are helping!! 

Holding Our Own

It’s been 1.5 weeks of full treatment and so far side effects are minimal. The biggest issue is exhaustion, but I’m confident that will improve. My nurse says I need to stay active in the short-term even if it is hard as that will help me in the long-term. Do you hear that mom?? I’m going to do all the things.

The best news is that my pain has improved. I don’t think I realized how much pain I was actually in. Maybe it is like boiling a frog…slowly increase the pain and she won’t notice?? I haven’t taken any prescription pain meds and yesterday I didn’t even take over the counter meds. Woot woot!

I have one spot on the upper right of my ribcage that hurts on my back and my hip still hurts, but nowhere near as much as it did. My lungs still bother me and I cough when I breath too deeply. I guess I can’t expect 100% improvement in a very short period of time. Maybe next week I can report improvement in those two areas.

My hair is awful. I should be grateful that I have hair in the front, back and sides, but the top is completely bald. If it wasn’t for that, you couldn’t look at me and know something is wrong. I am really looking forward to hair growth so I can stick my head in the sand. 

This is a plan for living a long time.