Checking in - and out - and in - and out

As my summer began, I was finally ditching the oxygen I'd been lugging around since April and was looking forward to finishing my steroids and having a nice, relaxing summer. And then my PET scan happened.  

I have a PET scan once a year, and CT scans every 9 weeks, to see how my insides look. The last CT I had showed some growth in my lung lesions but nothing else, and so things looked pretty stable...although my CEA number, which can be a marker of the amount of certain kinds (including colon cancer) of cancer cells floating around your bloodstream, had begun to rise. So the PET scan would help us dig a little deeper and find out whether that rising number was a result of my pneumonia/pneumonitis (which can happen), or because of a new recurrence (keeping in mind that we already knew I had lung lesions that were slowly growing). Well, the PET showed those lesions, as expected, and also showed a little smudge in my liver - although nothing had shown up on the CT scan there. 

Due to the pneumonitis, removing the lesions in my lungs via SBRT was not an option - and probably won't be anymore, honestly, since my lung capacity isn't fantastic these days - and the rising CEA plus the little lighting up (if you have cancerous lesions, they "light up" in bright colors on a PET) in my liver was enough for my oncologist, Wells Messersmith, to recommend that we start a new course of chemotherapy. So, we did: an infusion every three weeks of Avastin and oral daily pills called Xeloda. 

Of course, my body likes to be contrary, and I also have ITP, which basically is a condition of chronically low platelets.  Low platelets are no good for cancer patients, because you have to have a certain amount of platelets to keep yourself together, literally: they help with coagulation and clotting, and without enough platelets, you can bleed to death. And many chemotherapies hit your platelets pretty hard, and for me, even ones that don't normally affect your platelet counts all that much can make my platelet counts fall quickly. 

Of course, that's what happened. After one round of the Xeloda, my platelet levels were way low, so we had to delay the second round by almost two weeks. In the interim, I took N-plate, which boosts my platelet counts (and is another shot that has to be administered at the hospital)! Yaay. I started my second round of Xeloda today. 

And then there's the Avastin. A lot of people get a side effect called proteinuria, which is what it sounds like: protein in your pee. I had to join the crowd of course: my protein levels in my wee were sky high. I even had to do a 24 hour collection of my pee so they could see just how much protein, exactly, was there. (I also had to go back and get a second bottle for collecting, because I"m just an overacheiver like that.) I've had two doses of Avastin and now will have to wait until my levels come back down so that I can get another infusion. I'll have to do another 24 hour collection, so if I show up somewhere with a brown bottle in a cooler, don't be alarmed - and DON'T OPEN THE COOLER. 

So. My relaxing summer has now become a merry go round of doctor visits, pee collection, infusions, and chemo. I'm more than a little bummed about that. Managing my illness right now has become a full time job, basically, much to my dismay and that of my husband, who has been accompanying me to all of my doctor visits, and my kids, who just want to be kids and not be shuffled around and have to worry about their mom being sick. As for me, I had all of these fun activities planned for the kids and myself this summmer - but now between the doctor visits and the low energy from the chemo, we haven't really done much. Frankly, that sucks and it makes me mad. Fuck you, cancer.

At the same time,  the good news is that after just one round of my new regimen, my CEA number was cut in half! Aha! Super ninja chemo chop! The even better news is that I've been talking with my babies and cuddling them and watching them goof around in the sprinkler while I read for fun and making them cookies and having happy hour with my husband and spending long weekends in the mountains - that's all wonderful and amazing stuff, and I wake up each day with a long list of things for which I am grateful, which I think about as I lie in bed after waking and look at my "begin each day with a grateful heart" inspirational picture and the rectangle of "Denver blue" sky peeking in my bedroom window. And all of that gives me strength, and courage, and happiness, and energy. And I remember that I love my life and I'm happy and proud of the life my husband and I have made together and that I refuse to let it all just slip away from me. The mind games that cancer plays on you are horrible, and dispiriting, and lonely. And so I push back and think about all  that I love and I "remember why I started" to paraphrase a great sage and remember that we each make the choice every day whether or not to "live every day of our lives" - a saying that is so simple and complex and complete and that my Auntie told me several years ago...and I get my game face on and take my medicine and climb out of bed (wondering whether my favorite jeans or shorts will fit today - #thanksedema) and I embrace the day (and any passing family member that I can get my hands on). I suggest you do the same! Also, whatever happens: