My jam! …and my reasons.

Today, church talked about all pain having purpose. Whether or not we see it or feel it or even understand it – the purpose is there. Whether the pain is physical or emotional pain, the purpose is there. There have been a lot of things happening recently that have given me pause and caused me to stop making excuses and instead make changes in my life. Any obstacle or excuse that I have found has been, quite literally, alleviated before I even had a chance to concern myself with it. I cannot help but see that God has a plan and a purpose, even if He isn’t showing it to me yet.

I’ve mentioned previously that scanziety is very real. Whether you feel great or crappy, there is always a fear when scans approach. Even as recently as December, my doctor was 80% sure my scans looked stable and then – POOF! – cancerous fluid is present, and I didn’t have any symptoms. I’ve been through quite a few scans over the last year & a half – some have been great and others, well, not so much. One thing that I’ve learned is that I cannot change the outcome of the scans. I can only change my perspective of them.

So as tomorrow’s scans quickly approach, I decided that it’s better if I share how I feel physically. I think this will help me to better prepare myself for any news that may or may not come. It is not helpful to worry unnecessarily or spend time fretting about what may or not be. I need facts, conversations with medical professionals and to remain calm. That being said, scans are always something that I try to turn a blind eye to because I don’t want to spend too much time or energy thinking about them beforehand.

I pulled up my tumor markers yesterday, from Wednesday’s blood work, and saw that they were elevated. You may recall that they dropped back on January 5th – which had me jumping for joy. Unfortunately, they are back up again…and higher than they were in December when I stopped Xeloda. My CEA is 16.3 and my Cancer AG 15-3 is 26.7. Yuck.

When I saw my oncologist back in the beginning of January, he had shared that even if my end of January scans showed progression (depending on how much), that he may not change my treatment yet because typically new treatments take 10 – 12 weeks to be in full effect. I don’t know whether or not the fact that my tumor markers were initially lower will factor into that. I imagine that my scans will play a significant role in that decision as well.

I will say that my lungs were full of cancerous fluid when I had my blood drawn – over 1700 ml of it…enough to warrant a procedure to implant a permanent catheter. I don’t know if this matters in terms of tumor markers or not. Perhaps Afinitor doesn’t have the opportunity to work fully on my cancer because it can’t keep up with the fluid build-up in my lungs. Who knows – I don’t even know if that makes sense medically. 😉

Some parts of my skin look significantly better, such as two of the areas above and below my radiation burn that have been quite painful since September. Both areas appear to be healing, which they haven’t done much of in the past 5 months. My skin lesions, on the other hand, aren’t looking as good. They don’t look a whole lot worse, mostly just redder and perhaps one is big enough for a trial now (it may be slightly too small still), but also there seem to be just a couple more than there were a few weeks ago. There weren’t any new ones popping up initially – which was fantastic. That may have changed.

The lymph node on the right of my neck that was previously swollen – and then disappeared – seems to be venturing back into my life. My jaw also suddenly hurts when I yawn, so I’m not sure whether or not that is from Xgeva or a cancerous node.

So that’s where I’m at. Oh, and I’m tired. My platelets have suddenly risen (another concern of mine that Afinitor may have stopped working) so I can’t blame them for my fatigue. It is on my list of questions for the Nurse Practitioner tomorrow though. It doesn’t seem to be getting better, despite my numbers changing.

I’ll admit that when I first saw my tumor markers yesterday, I was a bit distraught. It was the one thing that I was holding onto that would tell me all of these other things could be explained away. Seeing that they had jumped, and higher than December, hurt. A lot. Frankly, I was angry. I can’t catch a break with treatment! My cancer is just too dang smart – it keeps mutating to beat out any chance of it dying off! Why do I keep trying when cancer just continues to win?!

Yes, I was yelling – mostly at the Universe. At that moment, a new song came on the radio and Jacob yelled “This my jam!” and put both hands up the air to dance along while singing to the music. I took a deep breath and smiled.

This is why. Right here. Jacob, Joe…my family, my friends. This is why I continue to fight. This is why I don’t let progression or tumor markers deter me. This is why I will unearth every possibility for treatment that I possibly can in order to live out every single moment of life that I am able to. These boys, these are my reasons.

I may not know what God has in store and I may not know what the future will bring but what I do know is that I am meant to be here now, in this moment. I will not waste my time worrying or being angry about this cancer. I won’t waste my time concerning myself with things that I cannot control. Instead, I will stop, change course and redirect. Because that is the only way to move forward.

It ends with good news…

This weekend has been a little rough. I mentioned the other day that I’m incredibly exhausted. It hit me hard this week, which could be because this week back to work, and all aspects of life, was chock-full.

The right side of my back has been bothering me for a few days. It’s not horrible but it hurts. I am getting a chest xray next week though, so I’m not too concerned for now.

So then I woke up before the sun did on Saturday with insane heartburn. I had it horribly bad with chemo in 2015 and radiation last year but this time might take the cake. Just like before, it hurts in my esophagus as if I have burning actually in that area. It almost feels like a pill or 10 got stuck. So I started back up on my medications from before and Googled whether or not it is a side effect of Afinitor. It’s not, which is surprising. Something like 17000ish people were asking about their side effects and 7 of them reported heartburn. I’m gonna go with no… 😉

Anyway, so then Joe & my mom both mentioned the same issue – ridiculously painful heartburn. Joe even takes medicine for it and it’s not helping. So as much as it sucks, we are hoping that perhaps it is just something that we ate and will go away in another day. Otherwise, I I’ll be asking my oncologist before vacation.

So between exhaustion and heartburn, I’ve spent most of the weekend in bed. I feel as though I could sleep for days. I’m curious when they take my blood on Wednesday if they will require a transfusion or not. Perhaps there is something else that they could give me to help…who knows. We shall see this week!

Anyway, so then there’s my tumor markers. They were drawn this week and I debated on whether or not I wanted to see them. It’s a rather hard decision because I am cautiously optimistic of this Afinitor and afraid that seeing the numbers continue to go up will hurt. I debated on whether or not knowing is worth it if my numbers are still rising. A true struggle, right?

In the end, wanting to know won. I kept touching my neck and wondering if I’m not touching the right area and maybe it’s actually still swollen. Or maybe it’s the essential oils that are helping the cancer on my skin. Or maybe a hundred other things. And do I want to go on vacation wondering if this is the last one I’ll ever take?

I decided that I needed to know if this drug is working because I want to tell my son that our next cruise will be just as incredible…and know that I am telling him the truth.

I had my tumor markers taken when I had pleural effusion and my CEA was 11.4 and my Cancer Ag 15-3 was 23.3 on December 19th. It was up from November 30th, when my CEA was 8.7 and my CANCER AG 15-3 was 18.3.

My Cancer Ag 15-3 has always been within the normal range (under 31.3) but it has always gone up and down with treatment and progression. My CEA though has always been a solid indicator for me (anything under 3 is considered normal).

On January 5th, my CEA was 10.2 and my Cancer Ag 15-3 was 17.5. 
They went down. Yes, it’s just a little. Yes, my CEA is still high. But they are down now. And they were climbing in December. 

Down. They are down.

Oh, this makes my heart smile. I know things can change in an instant and with cancer they often do. But right now, my numbers are down. This treatment, though not standard for me, may actually be working. 

I may be number 2.

Happy Sunday to that, my friends. 😙