The other day I spent a good deal of time perusing cancer t-shirts and hats. I have come to learn that almost every cancer has a color--pink is not the be all end all. You can wear gray for your uncle, light blue for your dad, and virtually every other color in the rainbow for someone. I had no idea. I also had no idea that the battle for a breast cancer cure is now an effort to save "second base." I didn't even get it, but of course Jay got it as soon as I told him... Speaking of which men can now proudly wear shirts that say "I'm a breast man," or "save the boobies." What is the world coming to? So of course we found lots of "Cancer Sucks" shirts. And many that said something to the tune of "I kicked cancer's a@@, do you want to be next?" and the similar "I already beat cancer, I am not afraid of you." Bo's favorites were "My bald head is cuter than your bad haircut" and "I have chemo brain, what's your excuse?" My favorite, hands down was "If I had known how much work it would be, I never would've gotten cancer."
It is a lot of work. Yesterday I spent ALL DAY shopping for a pair of slippers. You can get ladies and girls slippers in every size shape, color and fuzz level imaginable. And you can get a decent selection of respectable men's slippers, but no one makes slippers for boys. I ran into James and Jenny at the evil place (the one that begins with a W that I only shop at when I am desperate) and James suggested I try Bass Pro. Well that may be an even more evil place to someone like me--I am pretty sure there are no stores I like less, but I checked online and they have a pair--in camo--ugh, I am not a lover of all things camo. But I may end up there if things get desperate.
So speaking of things and getting back to the humor topic. What do you say when your oncologist calls and tells you there has been a "little hiccup" in your case? Seriously, I started to make jokes in my head. It's better than your surgeon calling to say he HAS the hiccups--"oh, you're in for a vasectomy, hiccup, I'll get right on that..." Yeah, uhhuh, is hiccup a medical term? Well that was the call we got today. It seems Bo does not have PPB after all. His tumor is lacking epithelial cells, one of the true landmarks of PPB. So, the team is confounded and they are not sure what he has. It is possible he has adult pulmonary blastoma, or some form of sarcoma. Whatever he has, if we thought PPB was rare, it at least has a "club." Now he is in a "no one has ever seen this before" club of one! In a way it's a relief. We have not spoken about the fact that PPB has a not so good prognosis, so perhaps we can hope for a "better" cancer? But it is also scary and amazing and just makes the whole experience that much more surreal.
So, I am tired and I need to keep this short. We will still go to the hospital tomorrow to have a port placed. They are still convinced that no matter what it turns out to be, he will need chemo, and the surgeon says that in an ideal world, he would have the port placed and wait a week or two to start chemo, so this is good for his little body and we will get to come home tomorrow, most likely. And in a week or so, we should get pathology reports back from all the third, fourth and fifth opinions the oncologists and pathologists are seeking. It's a crazy ride, that's for sure--in the amusement park of life, this attraction gets very low scores! In my next post I will tell you about Super Suppers because things have gotten interesting lately and the beautiful humanity of people just amazes me! Have a great week, we will let you know how things go at the hospital as soon as we can. Truly, Lisa
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3 comments:
Our thoughts have been with you over this holiday weekend, wishing Bo courage in facing his first chemo treatment. So he get's a bit of reprieve? Hope the pathologists get this all figured out...
Hey Lisa,
Good luck at the hospital today. We will be praying that Bo's club of one is a good development. :)
I just wanted to let you know that if you go to froogle.com and type in 'boy slippers' there are a few respectable and a few goofy options if you have to resort to buying online.
Take care!
Lisa~
Thank you for this truly amazing, inspiring, and informative account of your family's journey through cancer. Of course, I wish Bo weren't going through all this, and, therefore, you'd have no reason for this blog. But I'm grateful for it nonetheless. Kevin, Ryan, & I have Bo and you guys in our thoughts & prayers.
I typically wouldn't send a post, but just wanted to let you know that I actually worked on a few of the studies that you cited about familial functioning & PTSD. (I'm assuming A. Kazak was lead author on a few you've read?). In any case, if there is any way I can be a resource, feel free to call or email.
Lots of love,
Mary Beth (Weston) Ertel
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