There is so much I want to say, and so much I am burning to update since my last post. I was somehow caught up in that I needed to do it IN ORDER which I meant I “couldn’t” write about what I wanted to until I somehow wrote about the other stuff. Fuck it! I got a lot, peeps. And I’ve got time. (Big cheesy grin here). So even though I can’t wait to “talk about PETS (as in scans)” (I’m a virtual 80’s soundtrack in my head, thank you Salt-n-Pepa), and the COOLEST EVER PROJECT and treatment, and the crazy side of steroids, and the apparently sociologic experiment I’m conducting going wigless this time, and all the things I want to share about cancer… I can’t wait. I had to stop myself — I was doing it again! I was trying to impose order and rules where there sometimes is none. (Ding ding! Lesson!) I tell you, the times they are a-changing. (There’s a little 60’s reference just to keep it real, and now I need to listen to Bob Dylan.)
I don’t know how to explain what is going on, and I don’t care (and that is what we call growth, people). All I can say is…it is something magic . Something transformative, transcendental, something I don’t have the words for but feels bigger than me and is lifting me and the cubs to a buoyed up place of such awe and joy and wonder, and fills me with such gratitude for my amazing care team, family and friends and community, and lifts me to KNOW that I am getting better. (And I don’t care that I just wrote a run-on sentence.) We are so very, very blessed and the blessings just keep coming and coming. How is it that I have “stage IV cancer” (yeah, whatever) and I am so blissed out? Someone suggested to me it is a gift from God. Others might argue better living through chemistry. Are you are wondering if this is a medicinal herb talking? (It’s not.) Maybe I can show that giraffe a new stage or two. Whatever. I accept. I am not questioning. Comparing this journey to last time around makes no sense. Last time I knew I was still sick. This time, I know in my heart and to my core that I am beating this. I don’t know why the fucking cancer needed to metastasize for me to get here, but I don’t even care anymore. This is not false bravado or trying to rally. All I can say is I feel the power inside me to be transformed by this experience and I know I am going to scream like a banshee when the cubs graduate. I am doing it for them, I am doing it for me, I am doing it because there is some crazy call within me that this is what it is SUPPOSED to be happening. All I can say is my INNER WARRIOR IS AWAKE.
And I’m laughing right now because I wrote that sentence and then had to go break up a cat fight outside. This warrior is all kinds of bad ass. I should mention it’s 4:30 a.m Steroids are very much NOT my friend.
I am learning so much. The more I am open to that and accepting, the more it amplifies. And the blessings just keep pouring in. Last time around, my goal was head down, all business, kick cancer’s ass, be as not sick as possible and get back to “normal life” as quick as I could. Whatever that means. Turns out that is not the way this game works. Not for me anyway. This might be MY biggest lesson, and one I am hearing with every fiber of my being. I also am understanding in new ways how highly personal this journey is, and how not everyone is on this path. I don’t have all the answers. I’m thinking of a few people specifically while I write this, but maybe it will mean something to you too. I didn’t start this blog when I wasn’t in this space. Couldn’t have. It took time and energy and a whole lot of shit to get here. A WHOLE LOT. I hope maybe to go through all that at some point if it could help people fighting where I was earlier, but just know… if you are not here right now, I get it.
Two big things happened yesterday. The first is my vision came back clear and sharp as day. I had noticed post-treatment what I thought were “chemo eyes”… I just didn’t see as clear post-treatment, and then had noticed increasing decline, and REALLY noticed it at the start of brain radiation. I am seeing as crystal clear now as before this all happened. Makes me wonder – was it somehow brain mets and not ‘chemo eyes’ making it funny? I think the previous MRI I had to rule out mets was very early on in the first go-around. Is it possible those little fuckers were there all along? That’s how it works and why it goes there. Chemo doesn’t penetrate the blood-brain barrier… so even if you are treating systemically and getting it, those little shits can get up there. All I know is I lay on the table each day in my awesome Hannibal Lector mask (fits kinda different now without hair!) and I can feel it working. They say people experience it a little differently, stimulating the nerves and all. I smell a unique smell, close to bleach, and see blue lightening bolts. Powerful stuff. I swear I feel it working.
The other big thing is I said UNCLE. Seriously. This may be the first time I have done that with this whole thing, and all I know is that one simple act was as transformative to this as anything else has been. I had had a very bad steroid night, and I had been up since 1:00 a.m. There was a very full day planned. Last time around, balls to the wall, head down, all grit and determination, I would have done it. And I soooo would have paid for it. This time? I cancelled all but the necessities and accepted that to stay strong this momma bear needed to rest. And I did, and it was RIGHT and GOOD. There was still a horrible scene with Cub 1… (stay tuned) but the difference was that I loved him anyway and parented him through it in a way that was authentic and genuine and part of his growth. 10 is really tough, especially with some of the stuff he carries around. We are all healing from the inside out, and seeing that transformation in them too is awe-inspiring. WE ARE ALL GETTING BETTER.
Oh, and you know what I did with my steroid energy? I cleaned out my closet. Yeah, whatever, doesn’t that sound all nice and homey? NO. I CLEANED OUT MY CLOSET. I am talking CLEANED OUT. Turns out I had 10 years of psychic SHIT that I know was holding me back, as evidenced by how I feel now. There were things in there that made me FEEL BAD. Why? Why would I do that? Why was I not ready before? Who cares. I am now and it’s fucking AWESOME. The sweater I wore on the first date with the ex-husband was still hanging in there. Buh-bye. Didn’t even care enough to burn it, but did throw it away so that I didn’t accidentally pass on any bad ju-ju to someone at Goodwill. When my grandpa died, I took some of his clothes that I would sleep in for comfort. Now they are just gross ratty t-shirts that make me look homeless. They are not him. I feel him with me when I need him. He’s just right and now those clothes are weird. I could go on and on, but trust me, that closet purge was damn near spiritual.
Okay, let’s talk blessings now. Not in order of importance and not a comprehensive list. Just some highlights. Including one amaaaaaazing video for you to watch. And of course there is the amazing project that my army and I are working on, but I’m not ready for the blog reveal on that yet.
One. Family. Friends. Community. Care Team. Blessings blessings blessings BLESSINGS. Seriously. If you have to be going through this, they make it ALL OKAY.
Two. THIS IS BIG. THE HOUSE IS ALL OURS!!!! There really might not be words for the level of deep soul contentment this brought me. I can see now why I didn’t get better living in the old place before. It’s funny, I was very glad to be done with it and finally move. Ex didn’t have such an easy time letting go when it came down to the sale, although he hadn’t lived there since the night of his arrest. I was not aware of how toxic and ultimately soul-crushing that place was for me until we were done. In our final words about it, I told him I was glad to be out and that hopefully he would be too. He said, “I don’t expect you to understand. That was always MY HOUSE.” And you know what? It was. We were married 10 years and it was “his” third house. (Note to women out there: if you are not on the house, RED FLAG.) This is MY first house, and the light, joy, and laughter here is amazing. WE LOVE OUR HOME. I can feel it healing all of us. Life is so very, very good here. And of course, there are all kinds of things I want to do and projects, etc. but it is out of a feeling of love and appreciation and honor and NOT because I have to. The cubs looove it here too. We have spent more time outside in our yard and just being together than we did in months on our 5 acres. Moving into town was so good for us, and so fun to walk places and ride bikes and scooters and be near people. Loving it here so much — and THRIVING!
Three. We are feeding and nourishing our bodies, which I swear is helping our souls. Seriously. We have stopped eating anything processed or with other than natural sugars, and no more chemicals and mostly organic. (Okay, the cubs are still kids, and still get to be… so it’s not absolute for them, but it’s a gazillion times better.) TURNS OUT, peeps, it doesn’t take any longer to eat, cook, or shop this way with some planning ahead, and the purification that I can feel and see in all of us is astounding. Double blessing? Some very sweet girls have learned to bake this way and have been dropping off treats for us, so there is always something extra special here. (And I know this is a big deal… the ingredients are both difficult and spendy, so it’s such an appreciated gesture… and I can’t wait until this summer when I can spend time baking and experimenting more.) It’s funny, last time on the steroids I craved (and happily consumed) things I would never have eaten before… LOVED corndogs, and pepperoni pizza, and really, tons of junk. Weird that “chemo” put on 25 pounds. It’s not the weight, though, again… it’s the somehow ENERGY of the whole thing. I literally feel like we are getting healthy from the inside out. My tastes have already completely changed and I want totally different things right now, and I love that I can see a difference in the cubs. And we hang out in the kitchen – and they help and experiment and love it. The dumb part is that it is stuff I knew/know… just didn’t make a priority. It seemed so much easier to heat up chicken nuggets in the middle of everything. It’s not easier, it didn’t help us or make our life better. What we are doing now does. That is a blessing. I love that people around me are sharing in it too.
Four. Captain America. Seriously. Swoon. THIS IS AMAZING!!! So, the story is… we love him. He is our favorite superhero, and superheroes are BIG TIME around here, so that says a lot. (Although I have had a serious Wonder Woman thing through all this, there will be a post about THAT at some point because there is a story there too.) Absolutely loved his first movie and couldn’t wait to see him in Avengers. Cub 2 is especially into him, but really it’s a family thing. And you know what? I may be 40 and my cubs’ mom and probably damaged goods, but COME ON, I know hot when I see it. (And now I feel a little bit bad saying that because I have so much respect for what he did for us that I don’t want to be like that.) So, here’s how it happened. I’ve mentioned the Goldbugs (our name for them) and what an amazing and full-circle and absolutely uplifting thing to have them in our lives. I grew up babysitting this family of 5 boys, but the impact they have had on me is astounding. Goldbugs are great family personified, and I hope and pray I can raise my cubs with as much love and grace as they have. (The cubs haven’t figured out that they are not technically family, and I’m not telling). We love them and love spending time with them. At any rate, after seeing the Avengers, we of course had to text about it a little, seeing as how the cubs wanted them to know they had seen it. And of course, because I have to be like that, I joked about the whole Captain/Thor thing, sort of turning it into a Team Captain thing, because yep, I can still roll like a 16 year old Twilight fan. And Goldbugs ran with it, because that just seems to be how they roll. And surprised us with this!!! The cubs absolutely can’t stop watching it, and talk about it all the time. We are still smiling over it! This was SO big for them! (And dangit dangit dangit, 20 frustrating minutes later I can’t figure out how to embed it, so you’ll have to click the link until I can get my brother to fix it for me…)
And, oh there is more. So much more. I am loving that I can share it all here, and now that I have accepted it will be all out of order, I think I will be back a lot. Take that, Hello Kitty diary.
And here is the other deal, since I know you might be out there wondering how I can be doing and feeling all this. I am accepting it and allowing it, I am totally open to it. I will also always be a “traditional” or “Western” medicine proponent. I am so grateful for researchers and scientists and clinical trials and cancer drugs etc etc etc . I am doing brain radiation until June 12th (can’t believe I am almost done!) and then I start a systemic chemo on the 13th. It’s supposed to be low-toxicity and very well-tolerated, with the infusion only taking about an hour every 3 weeks. Sheesh – that’s nothing. It’s an approved drug… hope to continue to explore trials but likely not a candidate for awhile with brain mets. Here’s the deal… I’m not going anywhere. This is a 2nd line chemo. There are something like 5 lines. And there is some evidence that this could potentially work as a maintenance drug. So that is my treatment for now, but I am open to change as I need to. I do believe it has to be more than just my treatment, though. And I am doing everything possible to finally heal us from the inside out.
My genetic testing so far came back with NOTHING. There is nothing to explain why I have lung cancer. No smoking, no family history, no genetic mutations (so far), no exposures, nothing. I have a theory that my oncologists won’t necessarily agree with. I think I am sick because of the way I lived. I am sorry to say that I think my marriage, and all the ways I “coped” with it, made me sick. I have no doubt that if I had woken up in the hospital on June 2, 2011 and they told me (as they did) that it was NOT in fact a localized tumor, that it was stage III cancer and that my nodes were all affected… if I had been married to him still, I would be dead now. I believe that wholeheartedly. And that we had an evil divorce (always that way to be fair) and court and stress and no money and stuck in that house and ohmygawwwwd it actually hurts to think back on all that… while I was fighting cancer? Shit. No wonder it went to my brain. Just saying. It’s so different now. The night he beat me, he kept saying over and over, “You’re going to die alone.” Those might be the last haunting words for me, and still the one dark place I can so very occasionally go. I have this vision now when I hear that in my head, though, and I have to say his voice is getting much smaller and less powerful. I am free. I am a warrior! FREE BIRD!!!!
Is this dancing in the meadow? Maybe. The sun is sure shining brighter. Life isn’t perfect. It’s REAL. And there are still lots of challenges, but I am finding that I can deal with them in whole new ways. I have had some very difficult times with the cubs. I have had lots of times of really not feeling well. I have had some steroidal moments that make David Banner look like he can stay calm. (I also had a crazy moment in Target NOT on a hot day in the middle of a steroid sweat… I had about 6 fans piled in my cart and sweat literally rolling off my body as I flew around the store like a madwoman. To be a fly on the wall after I left)! I take Zofran like candy or I throw up a little in my mouth. I have had to deal with my ex, and really help the cubs deal with him. Who he continues to reveal himself to be does not surprise me anymore. I feel pity for him at his point. I support the cubs’ relationship with him because it is important to them and they need that. This is all separate from them, although I can see that they are seeing it. I am working hard to break the cycle of domestic violence. They still have a lot to learn, and as wonderful as they are, it’s bizarro to see how that side can play out (and sometime I will have to ponder on that, because he hasn’t lived with us for awhile now…) I wish someone had done that for him as a child, but I feel good for really the first time how we are getting through it. We are all literally healing.
Everybody wants to know prognosis. 5 years 5% is the common prognostic statistic. There you have it for those of you wondering. So, yes, I will get my “affairs in order”, because that is the responsible parent thing to do. Just so you know, though, I’m not buying what they are selling. I feel confident that we can find a way to manage this as a chronic condition and that I can show that having cancer does NOT mean cancer has me. My PET showed my chest is stable and there is no other metastasis beyond my brain, and I am telling you – I feel it to my core. I know this. This is what needed to happen to get here, but I am here now. More soon.
And you know it’s coming. Hey cancer?