Oh, wow, I have been a seriously neglectful blogger. I still have so much to say, though, so you know it’s coming.
But… THIS! The “big project” I kept alluding to… it’s here! And *I LOVE IT*! Hope you do, too…
April 5, 2013 by Momma Bear
Oh, wow, I have been a seriously neglectful blogger. I still have so much to say, though, so you know it’s coming.
But… THIS! The “big project” I kept alluding to… it’s here! And *I LOVE IT*! Hope you do, too…
February 4, 2013 by Momma Bear
February 4, 2013 by Momma Bear
Why did the mutant chromosome go to the tailor?
To get new genes made.
Mutant humor is big for me these days. I’ve been hugely slacking in the blog department. Not really a Hello Kitty diary thing – I have plenty to say. I think all the drama with the blog took away some of my joy for the process. I know rationally that not blogging only gives that energy power, but somehow I couldn’t get started again. Enough is enough. (And hmmm… think I have written that before.) I have tons of things to process, including why I let the drama take away my joy – so I’m back. I really admire another stage 4 lung cancer blogger… she’s much more reliable than me. She’s also insightful and really funny. You should check it out: aquariusvscancer.com
Okay. So here is the update. I left you, dear readers (do I still have any?) thinking that I was starting to lose the battle. And I was. Things were looking pretty bleak. I continued to be hopeful, though. I’m wondering now where that came from – denial? Stubbornness? A feeling that I knew something would be different? I’m going to be thinking about that one for awhile.
I got to do something that was on my sorta bucket list. I spoke at the Lung Cancer Vigil. I wrote my talk, of course. No winging it for this girl. The topic was “HOPE”. What I said, and what I believe, is that I had hope that if I could find a way to HANG ON – things were changing so fast that there would be an answer.
The craziest thing happened. That was a Tuesday. On Friday, I saw my oncologist. He walked in and said he had the most incredible news. I was in a clinical trial and the enrollment included extensive genetic testing. My cancer progression triggered the release of the results. In spite of previously testing negative twice, I was POSITIVE for the ALK mutation. It’s still – almost 3 months later – sinking in. Whether one believes it is a modern medical marvel, or a God-given gift… it’s certainly MY miracle. There is a targeted therapy for the ALK mutation. And it explains why I was not responding (and only progressing) on traditional chemotherapies.
I’m winning now. Not just winning – doing some *serious* cancer ass-kicking with Crizotinib (or Xalkori) as my partner. At my first scan (60 days on treatment), the chest CT showed the cancerous lung lesions which had been previously noted as “innumerable – too many to count” were GONE. There was only one lesion in my lungs at all, and they aren’t even sure it is cancer. The cancer in my bones? Significantly improved. My brain was totally stable and probably reflects dead cancer. No more brain MRI’s unless I have symptoms. A MIRACLE.
A whole new world is opening up for me! Stay tuned.
And, as always, FUCK YOU CANCER!
November 2, 2012 by Momma Bear
That’s me, still singing. One of my anthems. And isn’t it so weird? The album name is “LUNGS”. Still singing in spite of the bad news yesterday — although, somewhere, Jessica STEENberg is breathing a sigh of relief. And have to say, love the song, not so sure about the video. Although, PRETTY sure she does the Snoopy dance in there. Love that.
Here it is. I do have bone mets. 2 of them. Somehow that doesn’t seem so scary – TWO! They’re treatable. I’m not having symptoms, although going back through the blog, I *WAS* having back pain in the exact area it was found before.
The disease is progressing in my brain. And while I will always fight (and thank GOD my doctors will too), it’s time for some acceptance – which is different than defeat. I’m not winning. That said, my family is famous for always loving an underdog. Cancer is SUCH a bully. And here goes Alanis Morrisette again, because there’s some real irony to me as a former fitness instructor. The metastasis is “scatter shot” in my cerebellum – the part of my brain that controls balance, coordination, and timing of large motor skills. The good is that I won’t get dementia. The bad is now not only do I share my dad’s hairline, but his dancing ability, too. (And I love you more than words, Dad.)
My oncologist rocks. Seriously. I’ll write about him more soon, but time for a name in case it will help others – Ian Schnadig at Compass Oncology in Tualatin. The most important thing to me right now is that nobody gives up on me. I’m still strong, still fighting, still relatively without symptoms. Having read through my share of stories on message boards, here’s where a lot of doctors *would* give up. He pledged to me he wouldn’t, that they would go to extraordinary measures. Things change so fast all the time in this world, and a whole bunch of money just got poured into this cause. I believe if I can HANG IN THERE the answer will come. So, HAIR we go again. Big round 3. I’ve already had whole brain radiation, which is a one shot deal. It worked on what was there at the time. Monday I meet with my radiation oncologist, another one of my most favorite people. Nico DeVette at Compass Oncology in Rose Quarter. We’ll make a plan, but I know it’s under the category of “salvage”. As soon as I’m done with some sort of radiation, I’ll immediately start some systemic chemo. So, some dog days are still coming. I’m not scared, I’m just grateful that I still get a chance to fight – a chance to keep finding the joy and humor in each day, a chance to wake up next to and play each day with my boys (sheesh they are hard sometimes though), and a chance to love on my dear family and friends… and a chance to finish Damages season 4 (tee hee). I still feel like and know I AM A BLESSED GIRL.
And SO grateful for the chance to say – HEY CANCER??? FUCK YOU!!!
November 1, 2012 by Momma Bear
I had a birthday! Birthdays are a big deal when the stats say you only have a few left… not that I’m buying into THAT anytime soon. I actually kind of had a birthday MONTH, which is really fun. It’s so weird how I can be going along, just trying to keep one step ahead of everything (
lions, tigers, and bears schoolbus, soccer practice, and dinner, oh my!) and then like a lightning strike, I’ll have these crazy epiphany moments that I can’t explain. And it changes everything. I’m learning.
I swear there’s a jukebox in my head. Now it’s playing Sarah McLachlan’s Sweet Surrender. If I ever do get that Lifetime movie made, it’s going to have a hell of a soundtrack.
I’m learning that as a warrior, sometimes you have to pick your battles. Sometimes you have to know when to put down your shield.
Let’s just say that, thank you Tim McGraw, I gave some forgiveness I’d been denying. And it was like a 50 lb. weight instantly left my body. Aaaaaand… I think that’s all I’m going to say about that.
I also gave in to the cubs always wanting to sleep in my room – Cub 1 on the floor in a sleeping bag and Cub 2 in the bed with me. It wasn’t my favorite thing because I don’t sleep that well and I swear that 2 kid spends all night trying to get back into the womb. Then it occurred to me that it’s not too much longer they will want to be in my room, that at this point there IS something comforting to all of us. Then I started thinking about the symbiotic relationship mothers have with their children, and the one I’ve always had with my boys, and maybe there is a REASON they want to be there. When Cub 1 was a baby, I read somewhere about this… that if nursing mothers kissed their baby’s faces a lot, the mother would pick up what germs the baby had been exposed to and their body would produce the needed antibodies in their milk. Amazing, huh? And no, I never checked on snopes, I just kissed the heck out of those sweet cheeks. But I do know after my millionth round of mastitis and that many antibiotics, I just let my Cub Baby 2 heal me by “nursing it out”. And that when he was only on mother’s milk and developed a crazy rash that defied diagnosis, it turned out to be a reaction to MY developing thyroid issue. Cub 2 and I have always had some strange physical inter-dependence, so if I wake up clinging to one side of my king bed because he has rolled the entire bed width to be smushed up against me, well… who knows. Maybe he’s on to something. Maybe it’s healing. And Cub 1? That kid always knew what I was thinking. He used to freeeeak me out, because we’d be driving and I’d be thinking of something, and out of nowhere, he’d pipe up something related from the backseat. He still does it…*always* seems to know what I’m thinking. So he wants to be close to me at night? I surrender. The truth is that now I think it IS healing… if nothing else, to wake up in the night, and listen to their breathing, and know that the best thing I have ever done is RIGHT THERE next to me.
The real surrender for me comes not in giving up (HEAR ME NOW, FUCKING CANCER – I WILL NEVER GIVE UP) but in acceptance. People have been saying to me, “Oh, you’re so brave…” I don’t know if that is true, I have my dark DARK moments. But what’s my choice? Like I’ve said before, I’ve considered the options and facing whatever lies in front of me head-on seems to be the only real one. (Still pretty tempted by the ‘drinking myself to death’ one, but it wouldn’t leave much of a legacy…)
My most recent scans came back not-so-okay. The good news is that my lungs were totally the same – not better, not worse. Stable. The medium-bad news is that it looked like I had some bone mets. I had a bone scan yesterday (with the sweetest tech ever and she actually made the process almost fun) to confirm. I’m no radiologist, but I think I know since I watched the whole thing (and it would have been soooo cool if it was all theoretical and not really me) so I’m ready to hear it. That doesn’t stress me out so much. It means chemo and radiation and bone mets are treatable. The super-bad news is it seems like there are a bunch of new lesions in my brain. My amazing oncologists (they have a whole post of their own coming soon enough) just weren’t sure, though, despite the scan being read by a neuroradiologist. So they were gathering more information and we’ll be able to talk about it tomorrow with hopefully a clearer idea of what’s going on. It would just be baaaaad if it were true, though. Mostly because there is just not a whole lot they can do. I’ve already had whole-brain radiation, and you get one shot at that. Chemo, in general, doesn’t cross the blood brain barrier. And it means that the cancer is really progressing.
I have this fantasy going that I’m going to meet with my doctor tomorrow and he’s going to say…
“So I talked to the neuroradiologist finally, and he was like, “OOOOOOH, you are talking about Jessica STEIN-berg’s scans. I was talking all this time about Jessica STEEN-berg’s scan!” But (my oncologist would go on to say) don’t worry or feel bad, Jessica STEENberg is a 96-year-old great-grandmother of 4, who went tandem sky-diving on her last birthday. She’s had a very rich and full life, still gardens and does tae kwon do, but now that her great-grandchildren are starting college, she’s realizing perhaps it’s time to slow down.”
I feel bad throwing Jessica Steenberg under the bus, but MAN, would that be nice. When I told Cub 1 my scans weren’t looking so good, and I *wasn’t* going to be getting the chemo-break I thought, he started crying. “Why can’t we ever get a break from this?” he kept asking me. What do I tell him? This is certainly not the life I imagined my kids would be having. There’s so much heartbreak with cancer. It’s hard to walk the talk, but I have to show them… it’s not what happens, it’s what you DO with it. So I’m standing tall(ish – no smartass remarks)… determined to help them (and me) find the joy in each day. Even though I know I have some sucky ones coming.
My other theory is that my 2 oncologists have an under-the-table bet going to see just how fat they can make me. The news I’m really dreading is the steroid dose they’ll be talking about.
And, of course, sleep isn’t going to come easy tonight. And it goes without saying that the hard part is the cubs. But it is what it is, and I’ll face it and deal with it. I’ve done my share of crying in the shower these past few days, and I’ve gone down all those worst-case-scenario roads in my head. I HAVE to do that to be ready. But no matter what I learn tomorrow, this fat lady is still singing. You can count on that.
And hey cancer? FUCK YOU.
September 29, 2012 by Momma Bear
I really never wanted a locked blog. It was totally stifling me, too. I was spending more time investigating who was a REAL person registering than I was in writing. Yeah, ‘yaykaylaj’, I’m totally on to you. I removed the posts that caused all the drama into my personal archives. I’m just over it.
So, these are my last real comments on this topic. I may write about domestic violence in the future, or lament the fate of my children if they end up with my ex and his family, but in general, I’m going to focus on what I set up the blog to be about in the first place – and that’s this cancer journey. Of course, my HEALING is all linked together, but I’m tired of being the target of of so much denial, anger, minimization, and blame. Moving on. I realize now that by giving them so much room in my head they still have a hold on me.
I promise myself: I will make changes, not excuses. I choose to live as authentically as I can, not in constant denial. I will to listen to my inner voice, not the toxic ugly words of others – especially people I gave over 10 years of my life to.
So. Final Words. This is not YOURS, it’s MINE. If you don’t like it, DON’T READ IT. You were the ones that turned this into an “us vs. them” thing, starting with the night before my surgery that you came to MY house and screamed at me that I was a liar. This whole thing could have been behind us forever ago if you JUST TOOK SOME ACCOUNTABILITY and showed just the slightest of humanity and compassion for stage 4 cancer. You know what, though? Your inability to do either is about YOU, not ME – and ultimately says so much about YOU. And just for the record, I’ve never used ANY first names referring to any of you, and no last names are on the blog. This is about ME and MY HEALING.
One last thing. The blog is NOT my boys’. They have never read it nor will they ever. I feel great that I am able to support their relationship with their dad and help them manage their feelings about it. They are clearly half his in the sense that they struggle with anger and appropriate ways to deal with it. I am making sure they are helped. The legacy stops here, and so does me giving you power. OVER IT.
July 11, 2012 by Momma Bear
This has been a weird week, and I’m reminded a little too hard that I have cancer, stage 4 cancer. Damnit!
I think I was riding a high for awhile… find out it’s metastasized one day, start treatment the next, have a big party and start a super cool project (and yes, it’s still coming – don’t worry!), finish treatment, start chemo with no issues, go on a dream vacation (and yes, working on that big post), start a major house purge (feels sooo good, more on that soon), get new tattoos and then… oh yeah, reality.
I had my second round of chemo, and not sure why, but it hit me hard. Hard is relative after last go-around, but I just was/am so SO fatigued. Like sleeping 16 hours a day fatigued. Every time I try to taper off the steroids I get a headache (trying not to worry) so until my brain scan results I can’t really go off them. My chipmunk cheeks could NOT be bigger and GOOD LORD the things it does swelling my tummy. I’m pretty sure I could convincingly pose for pregnancy pics right now. I’m long past the vanity stage at this point but it’s sure not very fun.
And last time with 3 weeks in between, I didn’t think much about cancer. But now, in between these 3 weeks, I have a chest/pelvic CT, a brain MRI, and 2 big oncology appointments and then I go back for chemo. It’s a little hard to forget this isn’t the focus of my life (okay, it needs to BE my life) for the time being. I think that is what I’m stuck the most on maybe. The more I process the past 10 years, the more I am finally able to DO that now that I am feeling so much better than a year ago, the more I realize that it pretty much BITES ASS that I gave my healthy years to an abusive marriage. And yes, I am fully planning and betting on a long future ahead of me and cuddling my grandkids, but I do know that cancer and managing it will always be a part of it. I don’t want to wallow in it, but it makes me MAD. Just saying. And WOW WOW WOW, he is SUCH a piece of work it’s shocking.
I have started going to a support group. I like it. I always hear that old Sesame Street song in my head “One of these things is not like the other!” because it’s actually a breast cancer group, but the lung cancer group I tried was a horrible fit. Lots of ex-smoking grandmas who weren’t doing very well health-wise. This is a “young survivors” group and I like that they are dealing with kids and the issues that more impact me. I also like that people are at all different stages in terms of current battle, and being years out, and different stages, etc. It’s really hard, though, to be there sometimes when there is SO. MUCH. PAIN. I’m mad about some stuff (although have a plan to channel it), but I also know I have come so far in a year. And I am so grateful to our family and friends and community that got us there. It’s true, no one DOES fight alone. Thank you all for showing me that. I still feel like while OBVIOUSLY I wouldn’t have chosen this, so much good has and will continue to come out of it.
So, I’m going to keep working on the Disney Wonder post (finally have the slideshow done!) and then am working on another post that is keeping me up and will hopefully bring me some closure. Next week I will have all kinds of test results so I will update on that too. So much to say still…
And hey cancer? Seriously. FUCK YOU.
June 30, 2012 by Momma Bear
Learn a lesson here. When I was about 18, I got a tattoo. I was full of youthful ignorance, not even thinking about pregnancy, childbirth, and a phenomenon called gravity. I got it ON MY BOOB. On top of that, I got a lion head. I don’t know why, people. Apparently it meant something at the time but I couldn’t tell you what.
I started regretting it at about age, oh, 25. It still looked a lion’s head, though, so the occasional peekage out of my swimsuit wasn’t that big of a deal. And then at age 30, I got pregnant. OOF. All the body changes transformed Mr. Lion into kinda a Jesus. Which isn’t very Christian-like. And ESPECIALLY isn’t very Jewish. And then nursing? Can you imagine the view the cubs had? Yikes. I can only imagine the Pavlovian response they might have if they walk into a church…
And post-nursing? Wow, good Lord, did Mr. Jesus Lion start looking creepy. And now that childbirth is 7 years behind me and gravity has set in, he started looking PREEEETTY sleepy.
So, there you go. I had a creepy, sleepy Jesus lion tattoo. Here it is, but I will admit I’m kinda squishing things to make it look better.
I *HATED* it. But you know, with everything going on, I just never dealt with it. I looked into laser removal, but ultimately decided it would be really expensive and the results would be marginal given the colors involved. So I decided to do a cover-up. But what? It’s in just the right spot that something about the cubs (which is the only tattoo I could have imagined getting) seemed not quite right. So, then I started thinking about this most recent journey, and how this tattoo would be on my chest over my LUNGS (it’s right underneath my port)… and then I thought of the symbolism that got me through a lot of the past year and two months… and HERE IT IS!!!!
And this is right after the tattoo, so it’s still a little rough. BUT I LOVE IT!!!! And it is JUST RIGHT. And NO REGRETS – which pretty much sums up how I’m endeavoring to live now.
So, bring it – might even look into getting a golden lasso.
And… ummm…thinking about getting a tattoo? Because we got recommendations and went to THE BEST PLACE EVER. Seriously, just right. It’s Atomic Art and Tattoo and I now am a huge fan of Jason Bradbury. He’s fantastic and so is the place — the cutest house ever with the most incredible urban garden I’ve been in. It’s in Portland on Alberta. Check out their website at www.atomic.ws — or call (503) 284-6688. Love love love — highest recommendations! I went with soul-sister Erin who got a GORGEOUS tattoo so meaningfully designed for her… a heart for her husband and each son, and then a cancer heart for me. LOVE. What a great day.
And hey cancer??? I haven’t forgotten – FUCK YOU.
p.s. Did you know this about Wonder Woman? She was created during WWII and is a warrior princess of the Amazons (based on the Amazons of Greek mythology) and was created as a “distinctly feminist role model whose mission was to bring the Amazon ideals of love, peace, and sexual equality to a world torn by the hatred of men.” Kinda cool, huh?
June 9, 2012 by Momma Bear
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?
May 29, 2012 by Momma Bear
I woke up this morning and it was garbage day AGAIN. Just saying – I really can’t figure out how that keeps happening.
Treatment is affecting me… I know this because I am really tired and pretty spacey and spell-check is having to work overtime. All in all, though, it’s not so bad. I still really feel like if you HAVE to have fucking cancer, you would be pretty lucky to be surrounded by the people I am. Except for my ex, and only in my treatment haze am I allowing myself the luxury of admitting ‘out loud’ how appalling his behavior is. That is the ONE truly low self-pitying moment I have had over and over… and here goes Alanis Morrisette again… but if lung cancer is the #1 cancer in firefighters, how did *I* get it, not him??? Okay, enough. I suspect I will regret hitting ‘publish’ but keeping it real this morning.
Keeping it real. This clip makes me laugh SO much, I have watched it a million times and shown it to people over and over – no one finds it as funny as me, I’m sure. Sorry if it makes you watch an ad first… it’s worth it.
This morning I am scared. Doing a lot of second guessing of myself for not mentioning the headaches, or the other thing that started just around the same time, which is a weird lower backache. Not muscular, more spinal in the base. And I did it again… the first few days I pulled it, the next few I am deconditioned, the next few it’s cramps… when finally I have to admit that ummm…. YUP, I think I have some bone pain. I did mention it and now I am having a PET scan this morning. The scanxiety is getting to me. And now my brain is working overtime and every little feeling is being highly analyzed for potential cancer risk. I sooo don’t want to be that girl. Plus I totally screwed it up and am now worried I am fasting for nothing (not an easy task on steroids… I’m not going on a bull named Fu Man Chu, but you should see what I can do to those cupboards in 2.7 seconds). I am pretty spacy, and to be fair, this is my first pet scan with this timing involved… but in my focus of what I was supposed to do THIS MORNING for it, I forgot there was some stuff I was supposed to do last night. Which, for example, is eat a high protein low-carb dinner. That is no part of what I did, but dinner was one of the yummiest and most enjoyable meals ever… thank you Goldbugs. So now I’m wondering can they do the test? And how much more of this can I take? And WHY am I so freaking nervous??? I keep telling myself there is no Stage V. I mean, I already have Stage IV cancer… could it REALLY be worse? All I accept it means is just more treatment, and bring it bring it bring it. I envision a day, though, where this stage is behind me. I can accept that this will be a chronic disease for me, but I am determined and hopeful that we can find a way to manage it and keep living. A different life for sure, but a blessed one nonetheless. And here is my little tiny plea… I would like to do that without too much irreversible bodily damage. Just saying.
Time to make the donuts. Because life does go on. And hey cancer??? The biggest FUCK YOU to you today!