Thursday, July 9, 2009

Tripler Post Chemo Marathon

Lily and I have begun our post chemo marathon testing training. Let's see it's Thursday and we've spent 3 of 4 days at the pink palace. Aaaah, it's like old times. insert me rolling eyes. *Fortunately* this is my new sarcastic designation- think on it, reflect on it- it's very reminiscent of the good old finger quotations...which also were usually sarcastic. Ok, I digress. *Fortunately* Phil is night flying this week, so he has been available morningish- to early afternoonish - ish for help with Bella. We had Lily's endrocrinology appointment which led to a battery of other tests. Her "bud" development has continued, as has her furriness. Her hips are also widening. Our oncologist *reassures* us that any course that had started before chemo, will resume- so it is not unexpected for her to continue furryfying. And somehow here's me...not feeling reassured in the least.

So we(endocrinologist and I) conference with the oncologist, who is now back from somewhere far far away. Mid conference we begin a sidebar about mitotane since this is our first meeting in weeks. The endocrinologist is off trying to coordinate tests and such. Oncologist- so, um , by my calculations we should have been done with mitotane on the 29th. Maybe the hugging her and telling her I loved her was a bit over the top- and slightly caught her off guard- but I KNEW I wasn't crazy. I feel like it most of the time. When you go in 12 directions at once- you can't possibly be committed to one direction- but I was definitely in lust with the direction we just passed. Yea me. So we are officially officially done with the mitotane phase of this journey. Yea Lily!

We are scheduling her post treatment scans which will include MRI, CT and an Ultrasound of her belly. These will be repeated every 3 months for the next year. Today we had to do a blood test to determine something. That's all I know so you'll just have to go with it- that's what I do. Our endocrinologist is very good in a lot of ways, and she has a unique personality. It was during the last visit that it occurred to me that the storage closet with the ancient measuring devices in it that she trusted implicitly for consistent measurements- was in fact, her office. As Phil put it, she could pull 12 pencils from her hair and he wouldn't be surprised in the least - and I feel that is an accurate statement. Piles of books and papers and files everywhere. She doesn't trust the scheduling computer system and schedules everything herself- and I actually like this. She always has to be paged for our appointments- but it works. If you know me, I like to know what scan, test what ever we are doing, why, what it tells us, how often it needs to be done, etc. You have to be on top of things with this whole multidisciplinary treatment thing. But the words used to describe the test and it's purpose could not find residence in my brain- and really I should have asked today as we were doing the test- but quite frankly I was tired and hungry because Lily had to fast and I felt it would be rude to eat and there wasn't really time to eat without her seeing - so it didn't happen.

The test required accessing her port- drawing a fasting blood level- as well as 4 other vials for various other tests- followed by a shot in her leg(yeah THAT went well) and another blood draw(out of her port) 40 min later. I was just relieved it was 40 minutes to wait as opposed to the 3 HOURS I was previously told. This test apparently will tell us something about her hormone levels and yeah, well something I will eventually figure out. Right now her hormone levels are too low to indicate her being in puberty, so we have to rule out other causes(aka tumors) causing these changes. A lot of it is our new "routine" testing, some of it is being extra careful.


  1. My Dearest Jen,
    The hardest part of dealing with cancer is the the dealing with it. It is always in the background. It is always something that that may show up. It is always a shadow. Life on the other hand always goes on. We Connnolly's always choose life and the living and the good parts. Please give that part to the the little ones. That is the legacy of the Connolly Clan. Life and love. Love, Mom(Grandma)

  2. Lily - I hope all is going well now with the post-chemo checkups. My thoughts and prayers are with you and your family every day. I got the birthday card you sent to me. You all have such beautiful handwriting! Grandpa and Samantha took me to have lobster for lunch! And they got me a chocolate cake with just enough candles on it. Your Daddy knows I am 21! I loved the pictures of Phillip and Kiera, and I love looking at your pictures on the blog too! Love you all - Love, Grandma


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)