Sunday, June 1, 2014
Wednesday, January 1, 2014
For the first time in a really long time, I am feeling filled with hope, happiness, and excitement.
With the help of my Christmas gift from Ryan (a Fitbit Flex) I am already getting back into the habit of being more active. After really falling off the wagon with that whole thing this past year, I am thrilled to be back on track. And I officially believe, now, what they say about exercise being the best anti-depressant there is. Between getting back to being more active and the benefits of my Christmas gift from my folks (a Day-Light) I already feel all that sadness and hopelessness melting away.
Another thing that helps IMMENSELY is the fact that Ryan and one of our best friends in the world, Dan, are opening a garage together. They found a great space and are moving in starting tomorrow! So, if you are in the Cleveland area and need your car/motorcycle/RV/probably-even-boat fixed by someone who's not going to bullshit you, Ohio City Motorsport is going to be the place to go! (Like the Facebook page now for updates on when/where/etc. ASAP!) Ryan has needed something like this to work out for him for a long time and FINALLY it is all falling into place. We are so happy!!!
I feel like I am already kicking major ass in 2014, and it's only been here for 19-1/2 hours.
Ready for the next 8740-1/2 like you wouldn't believe!!!
Thanks for sticking with me through this rough chapter. I hope to be back with a lot more regularity this coming year.
Love you all.
Thursday, December 26, 2013
It did have its ups (my parents moving back to Ohio, my new job/health insurance), but on the whole it's been pretty difficult for us.
Starting with the brief breast-cancer scare that followed my first mammogram early this year. A scare that ended up being nothing, but brought with it the realization that fear of cancer RECURRENCE was not all I was going to spend the rest of my life dealing with, but fear of secondary and/or unrelated other cancers as well...
But I didn't just spend this year worrying about my own health problems - my father (tattoo dad) has had indescribably crazy health issues this year as well, a lot of which were terrifying and majorly stress-inducing for me. It seemed like the poor man could not catch a break this year: complications from a gastric bypass a decade ago lead to a complete gastrectomy (that means he has NO STOMACH anymore, y'all), which lead to various strains of antibiotic resistant infection, along with a broken and destroyed hip, and let's not forget a massive head injury which has lead to complete loss of taste and smell... I think it's safe to say he spent more of this year sick or hospitalized than not. And while it's not about me, it affected me horribly and I had a very difficult time coping with my worry about him.
Hell - I've had a very difficult time coping with my worries in general this year.
Most of the stuff with my dad began while Ryan was out on tour. I struggled to deal with the stress of everything going on with my dad on top of the stress of being in a new job and dealing with pretty difficult new hours all on my own. Stress is a major trigger for cancer recurrence fear for me, based on the stress I was feeling during the time leading up to my diagnosis. While I know it's not the cause... in my mind: me + stress = cancer. And that's fucking scary. And stressful. Commence vicious circle.
Because of this, Ryan being gone was harder than it had ever been before. And even though I was not dealing with it like the blathering, sobbing mess I was the first year he was on the road, I was doing far far worse, mentally and emotionally. We both were. His tour situation was no longer what it had been in the beginning. Too much had changed on both ends and it turned out that for both of us, it just didn't work anymore. I could not function without him around in a way I never expected of my previously independent self.
And so he retired. From touring. Waved goodbye to the Rancid family and came home to me. And to marginal self-employment and a whole new outlook on uncertainty - something that had never really been a concern before. Ryan is nothing short of brilliant and has an incredible entrepreneurial drive. Fueled by a desire to leave that uncertainty behind forever and "take care of us" he went after what seemed like it could be an amazing business venture, only to lose his investor after being vaguely assured that the guy "could totally do that". The loss crushed us both in a way I never fully let on to anybody. I just wanted something to work out for him. Just once. Something awesome. Something he really wanted. But no. This was not the way our luck would go this year.
Instead, literally within days of this falling apart, I was back to dealing with more health scares. Severe pain in my pelvic region had me worried and suddenly we were back to multiple doctor visits, CAT scans, and finally the diagnosis of Radiation Cystitis. Much like the breast-cancer scare, this brought with it a whole new set of post-cancer fears and anxieties. I not only have the fear of recurrence and the fear of secondary cancers to live with, but now, also, the fear of a whole WORLD of unknown possible late side effects from my treatment. I mean, at this point, who knows what's next. It really is terrifying and heart-breaking. Talk about feeling defective, old, hopeless and afraid - all at the age of 38. It's not fair. As my Oncology Nurse, Erin, said to me recently - I shouldn't have to deal with this kind of stuff at my age. The average age of Cervical Cancer diagnosis is between 50 and 55. Not 36.
All the while, I have been trying to remain positive. To believe that all will be fine and that no matter what happens, no matter what other trials we encounter, Ryan and I will make it through and be OK. Together. It's not always easy. One of my best friends, with no real explanation, chucked me during all of this. I have my suspicions that she felt I was not there for her enough during the difficult time she was having after a breakup, and I cannot make any excuses other than I just couldn't deal with anyone else's anything while I was struggling to hold on it a shred of sanity trying to deal with my own everything. I feel guilty that I may have hurt her, but more so hurt that I was not given any explanation or chance to offer my own. I guess the whole thing about how true friends are the ones that will still stand by you even after a long time apart should be my indicator on how true of friends this person and I were not. And even still, I think about her every fucking day and it bothers me. I hate feeling like I may have somehow hurt someone because I have been unable to cope with my own life and troubles. I want to be stronger than that.
I am trying. I'm trying to be that stronger person for Ryan instead, since I know he appreciates it (and ME) always. He started putting together another business venture recently. He has a kick-ass partner, all the skill in the world, the commitment, the intelligence, the drive... and no space for it. Well - he did find a perfect space, but there have been issues with the landlord/previous tenant that have prevented him from moving in. This, in turn, has resulted in lined up jobs lost - not to mention loss of hope and motivation. He and his partner are still trying to sort everything out, though, but without a pile of money on their side, it's not easy.
I am doing everything in my power to stay positive for him. I know in my heart this is the right thing. That it is going to work out and that Ryan will FINALLY be where he wants to be, professionally (and that that place is HOME and not on the road). Maybe it just isn't going to happen until the new year. Maybe the new year is when things will finally turn around. Maybe 2013 just needs to get a few more days of "suck" in. Whatever the case, and no matter how bad this year has been overall, the best thing I have taken away from it is this: Ryan and I can make it through anything together. We've proved it. In the four years and 24 days since we got married, we have MORE than weathered the "worse", "in sickness", and "for poorer" parts of those vows. Ready for a little better, health, and richer stuff now. Come on, 2014...
I want Positively Phoebe back.
Wednesday, October 23, 2013
After my cancer treatment ended, I felt AWAKE. I felt newly alive and filled with gratitude and wonder and love and calm. I felt like a better person. I felt inspired and believed people when they said they felt inspired by me.
Now I feel like I have lost every bit of whatever I gained from that experience.
Now I feel defective and unfixable. I am wracked with guilt, constantly unable to talk myself out of thoughts that I have ruined Ryan’s life and destroyed the confident, invincible man he was before my illness. I feel hopeless that this cystitis will never be fixed or that the longer it takes, the more broken I will become in the process and the harder it will be to bounce back if I am EVER able to.
And I feel alone. It’s easy to support someone going through cancer. It’s something everyone is familiar with and understands. But once you’re “cured,” that is all some people can see. They expect you to be all jubilant and healthy and my reality is – that’s over. The fucking cancer continues to ruin my life. Possibly even moreso now. I am in pain almost daily since the surgery. Some days it is crippling. I walk around the shop at work with my shoulders hunched practically to my ears because every fucking step is agonizing. Everyone here looks at me with pity. They are awesome and try to joke and make me smile, but it’s getting harder and harder for me to do. One day, as I was feeling especially sensitive, one of the dudes who likes to tease me every half hour when I walk by to pee did his standard “Gotta pee?” and I snapped at him that he’s making fun of a painful side effect of my cancer treatment. He got sorta serious and said he knew, but he figured if he made me laugh about it I wouldn’t be so sad.
And that’s just it. I am sad. This condition has made me so sad. I feel like I can’t do anything. I’m afraid to make plans. Afraid to be out of the house or away from a bathroom for too long. The pain is crippling but the sadness is destroying me. I’ve lost my life.
Someone recently said something about a line in a movie they had seen… I can’t remember who it was or what the movie was, but I remember the line:
“Don’t die before you’re dead.”
I feel like that is what I’m doing most days the past few weeks. Like I am a zombie. I can’t even really remember the person I became after my treatment. Who was that woman who was so awake and so alive and so filled with positivity and gratitude? Every night before I go to sleep, I write in my 5 year journal things that I am grateful for today. Yesterday, I wrote “Today I am grateful that I have a home and a job.” Really? That’s all? I feel sick that that is all I could come up with and feel like I was being honest about yesterday. Embarrassed. Who have I become that I didn’t feel grateful for anything else. For my life. My husband. My family. I laid there in bed, looking at that journal, and for the first time in the year and a half since I started writing in it, I honestly felt grateful for nothing. But I wrote my job and home just so the page didn't stay blank. Pathetic.
I have an appointment shortly with Dr. Avellone, and I feel hopeless even about that. I cannot figure out how to be Positively Phoebe again. She is lost. Ryan read a bunch about various treatments for this Radiation Cystitis that have moderately good success rates, but some of them sound like painful procedures and I am so tired of being poked at down there. I will do anything, obviously, to fix this or make it suck even a little bit less... But I can't say I have a lot of hope. We shall see...
The appointment went well, I suppose. Dr. Avellone said that my case is right about in the middle, severity-wise. He also said that my particular cystitis is concentrated at the bladder neck, which is a much more sensitive tissue, hence my more intense pain. He also believes that, since the pain seems to have gotten considerably worse since the biopsy that perhaps the pain I am feeling is related more to the biopsies he took taking a while to heal. This is common, I guess. He said it could take months for that to heal, and perhaps once it does, the pain may settle considerably.
At that moment, I felt myself soften again. And something resembling hope came trickling back into my heart and mind.
He wrote me two prescriptions. The first is a daily med that should cut back the whole having to pee 15+ times a day thing. Ringing in at a fucking dreadful $66 a month. He said there is a cheaper version that is a three times a day one that will cause my mouth to essentially turn into the Sahara, but I my just have to go for that, or at least try it. I cannot deal with that expense. Especially considering the other one, which is supposed to settle the whole pain thing is $73 a month!!! Ughhhh. I cannot win on these medications! And my insurance deals with meds in a totally fucked way. Sucks. The awesome thing, though, is that second 'script is called... wait for it...
Urispas. No. Come on. Sound it out. You're. A. Spaz. I have been given a drug that is calling me a spaz. Ryan and I both cracked up when Dr. Avellone told us that one. He said it was good that we had a sense of humor about it and Ryan responded that him prescribing me a drug called You're A Spaz was the best thing that had happened all week. Sad that that could not have been more true.
Also sad to be 38 and have a monthly prescription bill of close to $200, and an organic, hippie supplement bill of another $100. All because of cancer, the fears it brought, the realities it brought into focus, and the side effects it left behind.
Fuck it for me. For Ryan. For my knitting dad who beat it three times and my mum who went though it by his side and by mine. For the four grandparents I lost to it.
Fuck it for Pepper. Fuck it for Christina's mom. Fuck it for Andrea. Fuck it for Kristen's dogs. Fuck it for Dixie. Fuck it for Spencer and Lacey and Todd. Fuck it for a dear friend's dad. Two dear friends' dads, actually. Fuck it for everyone from my retreat the other weekend. Fuck it for another close friend who had a huuuuge scare last week.
I need to get Positively Phoebe back. I really hope I can. But I guess the fact that I am hoping at all is progress from the stuff I wrote before my appointment. So I must not be dead yet.