Living in-between

So - it's October and Halloween is seriously on the horizon. It's also been 4.5 months since my last update and I'm sorry! But, as the title suggests - we've been busy living "in-between" - in-between treatments, in-between appointments, in-between the hours sometimes. It all depends on what's going on that particular day. But lately - it's been in-between appointments - which is good. It means that my latest treatment is working. Praise everything.

SO - since June, when I had to shave my head because the IV chemo Taxol was making it all fall out. It's been busy since then. Let me fill you in.

6 weeks after starting Taxol, Heceptin and Perjeta - we had a PET scan. The treatment wasn't working as hoped. My liver and bones were good ... but my right lung ... not so much. In fact, my right lung was in such bad shape that the scan couldn't even really tell what was going on in there because there was so much fluid in my lung that it was collapsed on the scan because I was laying down. Yeah. Almost complete collapsed right lung. There were a good handful of spots/lesions/tumors in the pleura (the lining around the lung) as well as in the lung tissue itself that it was irritating the lining and creating fluid build up ... kinda like how you get a blister from the irritation. Only there was about 2 liters of fluid in between the lining and the lung itself. Yeah .... a two liter ... in my chest.

Needless to say, I had to have another procedure to drain the fluid. I went in for a thorencentisis shortly after that scan. They injected some numbing meds into my mid-back, toward the base of my lung, inserted a catheter (like an IV), and turned on the pump. And after about 30-45 minutes of the sound of peeing ... they extracted 1.5 liters of fluid from my lung. They estimated about half a liter was still in there, but to push it that far - it gets a bit dicey ... so we opted to stop at 1.5 liters. It looked like pee ... or beer ... feel free to pick your preference. But I'm told that it was completely normal in color. Praise everything ... again. Because the alternative is red, or bloody ... and indicative of something else going on.

As you can guess, since the scans revealed everything but the lung responding, we had to pivot treatment. I stopped the IV chemo Taxol and switched to the oral chemo Xeloda, and continued Herceptin. (Remember my attempt at pushing for this oral chemo initially - BEFORE IV chemo?? Yeah. Don't get me started on this path because I feel like I lost my hair for nothing.) I take Xeloda (zeh-lo-duh) for 14 days "on" and then take a break for 7 days. This 21 day pattern is considered one cycle. Common side effects are something called "Hand and Foot Syndrome" and GI issues. I got both. After cycle 2 - we scanned again. And guess what - it's working.

As of my August scan, liver and bone are still clear. The report even said my liver looked "normal"!!!! Super good news. My right lung - almost everything resolved. Almost everything! Just one or two "residual" spots remained that were only "mildly" active. The hope is that those spots are on their way to ultimate, permanent cell death. Praise everything - again and again.

Since we've had to scan so close together, every 6 weeks for these last two treatments, my PET and brain MRI scans are out of sync. So that means I had to have my PET in August and my brain MRI in October. I had that earlier this month. And you know what? It was completely normal. Not even scar tissue showing up on the scan. I was able to cancel my appointment with my neuro oncologist because of such a good scan. Do you know how even amazing it is to be able to cancel an appointment and not the reverse?!!! So nice.

So here we are! Existing in-between these cycles of treatment and scans and appointments. I'm currently on cycle 5 of Xeloda right now and will be re-scanned again at the end of November.

So what have we been doing in this "in-between" time? We've been doing all the things regular people do - stressing over work, and going to pumpkin patches, and stressing over kid craziness, picking Halloween costumes, and just enjoying life. I've been taking western horseback riding lessons for the last few months - since June actually - and it's the best therapy I could ask for. It fills my spirit with such positivity and allows me to truly forget all my stresses because c'mon - you really have to be present when you're sitting in the saddle on a huge animal who is tuned into everything you're thinking and feeling. You're excited? He's excited ... which means he's trotting faster, loping faster ... trying to match your energy. It really makes me stay focused and control my energy and remain in a calm state. And to confirm it - my Apple watch actually shows that the hour I'm in the saddle - my heart rate actually drops by 10 points for that entire time.

ANYHOW. I could go on for a while about how much I'm enjoying these lessons and how much I'm really wanting to get my own horse ... but that's for another post haha.

As we roll into the holidays, I'm excited that my amazing cousins are coming out to celebrate Thanksgiving with us. My mom is (I think) planning on being here for Nicholas' 2nd birthday and Christmas. I'm taking more time to just enjoy being normal, for this time. I don't know how long we'll have it - and so I'm going to embrace every minute of it I can. My hair is growing back (slowly but surely) and I'm anxious for it to get a few more inches so I can try extensions. I'm nervous I may never have long hair again, so ... extensions are on the horizon. I think lol.

So in-between is where we live. And it's amazing. It may be denial, it may be truth. But either way ... it's life. And that's most important above all. I would normally apologize for being long in-between posts - but ... nah. I'm not. Cuz I was busy embracing living.