Wednesday, September 28, 2011
I have another blog to write, but it'll be pretty intense (I think anyway) and I'm not ready to write it yet. But I'd be remiss if I posted it without having a brief post to honor and mourn the passing of my sister soldier Madalyn Castelucci. I mentioned her and her daughters previously. I went to school with Christine and Catherine. I had the pleasure of being good friends with Christine, who I met in freshmen year at Tottenville HS. I spent a lot of time at their house, it was such a joy to hang out there and John and I shared our first kiss at the New Year's Eve Party 1993.
When I first met her family Madalyn was going through a very difficult time and the last thing she needed was a house full of teenagers crowding her house and eating all her food. But we were always welcome and she always had smiles, hugs and kisses for us. No matter how hard she was working or what she was dealing with, she was the kindest most loving woman. It was not only like having a second mom but like having a second home. When I look at the photos we have from High school a TON of them are from Madalyn's house.
More recently we all reconnected thru Facebook and then at the Healing Masses at Our Lady Star of the Sea. I have such fun memories of Madalyn making faces at me during the funnier healing stories. Sharing our hatred of the mediport. And just the hugs and kisses in general. I think those were the I went to the Masses even when I was exhausted or nauseous from treatment or just didn't want to think I had cancer. Knowing she'd be there to make me smile and I would leave feeling invincible!
Madalyn lost her battle with Lung Cancer on Sept. 20, 2011, 8 months to the day after I was diagnosed. I don't say that to make this about me, it's just that Madalyn popped into my head the moment I was diagnosed. She kept me from losing my mind because I knew someone in the fight. I genuinely hoped we'd beat the odds and cross the finish line together. When John told me she was gone I looked at him like he was speaking a different language, what do you mean she's gone? She can't be gone!
She left this earth peacefully surrounded by her beautiful daughters. That brings me some comfort because two incredible women in my life have passed at home with their children by their side. But I'm still selfish and wish they were granted more time. But we're given what we're given and we can't appeal.
So here's to my sister soldier, I will take you with me to every treatment, I will wake up with you in my heart every morning, and I will continue to fight for both of us. I don't really know what else to do.
Wednesday, September 21, 2011
Ok so I basically slept the Summer away. I didn't mean to, it sorta just happened. So I had radiation until June 13ish, not really sure of the last day exactly but I know my last steroid was June 24. I was pretty tired throughout radiation but Dr. Chan felt it was likely from the commute and steroid sleep disruptions, he was right. Because radiation tired didn't start until July, and people there is nothing in the world like radiation tired. Nothing. I have talked to people who went to work thru it all and I am in awe. Radiation kicked my ass and kicked it good. I slept for about 2 months straight, I didn't want to eat (yeah I know right!), I never needed to go to the bathroom, had zero desire for anything but sleep. And the sleep felt SO good. I don't know if it was the rest or the hibernation effect, but I hated being woken up. It created for quite a few standoffs with my family. For lots of reasons.
For one I think they genuinely didn't want to me to miss the entire Summer (which I did anyway) but I also think it was that this was the first time I looked like a cancer patient. I was bald and in bed and never got up. I imagine for them it was scary, but for me it was peaceful. That is until my mother would grab me by the ankles and drag my ass out of bed (which incidentally is how she used to get me out of bed as a teenager.) And I slept, I didn't just lay there or hide, I mean deep wonderful sleep. It felt amazing, but looking back I'm slightly embarrassed.
Now I know this was a side effect and I shouldn't technically feel shame for it, but the more I think about it the more I realize it wasn't just the side effect of radiation. I think there was a touch of agoraphobia too. Again when I say shame, I don't mean it literally, I know it's ok to feel what I felt. But I wish I had just recognized it instead of resisting looking at what was going on. I was just so resentful because I wanted to retreat into myself for a while and I didn't like being made to feel bad about that. But I know that isn't what my family was trying to do, they were concerned that I wasn't eating enough and that I might be falling into a depression.
Truth is I think a lot of it too was just not wanting to have to tough something out again. I toughed out chemo, I toughed out hospital stays, blood clot scares, a brain bleed, but this exhaustion...I just wanted to wallow in it. Enjoy the idea of having no responsibilities, feeling like I finally was getting rest.
John kept in touch with my oncologist and he became concerned. So I was sent for a blood tests to, among other things, see if my thyroid was functioning ok. I secretly wanted it to come back saying it was not working well so I could say "See, told you I didn't feel well! I'm tired for a reason!" But everything came back normal (except for my albumen which was a little low, so apparently I'd make a pretty crappy hard boiled egg). Then Dr. Krug insisted I go back on the steroid, I was furious! I didn't want to go back on it, I gained 30 lbs on it and my face changed too much. But by this point (mid-August) I had slept the entire Summer away, missed a million opportunities to go away with my husband and daughter, and missed the big summer of Amusement Parks that we had planned. So I reluctantly agreed to go back on it.
After a couple of weeks I feel like a new person. It killed me that the steroid worked, cause I really wanted to beat the exhaustion myself, but it simply wasn't happening. So I have to thank Dr. Krug and John for salvaging what was left of the Summer and for helping me feel like myself. Now I have to ween off of it again, but we have a plan to do it over two months. Dr. Krug kindly gave me leeway to do it on my schedule, with his guidelines. I appreciated that. So this coming Monday I'll step down from 2MG to 1MG. And then I'll step down to 0.5 MG. I actually think it'll work. I feel better and better each day.
On the other hand I can def feel a difference in my brain. I have trouble piecing together what people are saying sometimes and it takes me a minute to catch on to what the conversation is about. And if you don't give me explicit instructions now, you do it at your own peril.
There's another part to this new energy I'm feeling, that I'll explore in the next blog. I put that blog together in my head a while ago, but I can't bring myself to write it down right now, it became way too real recently. So it's just not the time for it yet.
As for updates, I had a CT scan this month, the first since June. I didn't expect to hear anything except for an update on the pesky blood clot, esp. since we haven't seen a change in any tumors since March 9th. So when Dr. Krug said, "Hey your scans look great, you've got some tumors that are shrinking, the one in the liver and the larger one in your right lung (the one that started it all, I call her Queen Momma Oddy). " The clot shrunk a little bit too. I was so stoked, I had NO expectations and instead I got great news. So the Tarceva is not only keeping things in check but it's working a little Overtime too! Monday was a great day. And then there was Tues.
Nothing good every happens on a Tuesday.