What if today, instead of fearing what was going on, I allowed myself to absorb it's painfulness? What if I thought about not how unfair it is, but rather what I could offer in prayer? What if I stopped lying to myself about what it is I want to do, and instead just said it out loud in spite of it's awkwardness and "inappropriateness"? What if I faced everything that I am afraid of, knowing I'd come out on the other side? What if I stopped thinking about how angry I am, and diverted my thoughts to how amazing it is that I can make a choice about how I handle my emotions? What if I accepted all these feelings inside me with kindness and gentleness of myself? What if I stopped avoiding the things that I know will make me face what I feel? What if instead of thinking and planning and always writing about what I want to do, I actually did it? Like right now.
I think about the waiting. That, I think, is cancer's toughest treatment: the constant battle to accept that there is no certainty in the future. Even when you know you're going to live through it, you are a sitting duck. You can't make any plans, because no one can tell you what's ahead of you. They don't tell you because they don't know. So you don't want to make any decisions because of the tremendous chance that something will come up and you'll have to drop out of that school you applied to, the job you interviewed for, that trip you planned. And doing that- starting something you worked so hard for, having it within your reach, only to have to quit when you are so close to it- or once you've had a taste of it- that is heart wrenching.
Then you are hit with a barely tolerable second bit of reality, and that is that you have become completely dependent on other people. You can't move forward in your life until the doctor tells you what to do next. So you wait for the next scan results- 2 weeks. Those are a little unclear. Call and schedule a PET. Another 2 weeks. Then an additional week for the results. Let's confer with a surgeon and see what she thinks. The appointment is a month away. Should I be concerned about not getting in before then? No, your oncologist says, it's fine. So you wait a month. And then the surgeon wants to talk to another surgeon and also to a radiologist. 2 weeks again. Wait for surgery. Wait for radiation. Wait and see if the chemo worked. Wait, wait, wait.
Suddenly, you look around and a year of your life has gone by. When am I gonna have an answer? you think. But there is no answer. That's what none of us got the first time we went through treatment. There are no answers. If the doctor had one, he would give it to you. But he is making an educated guess and gathering all the info he can to do the best possible job at that. And let's face it, you just really want to know if you're going to live. And for how long. That is all it boils down to. And there is no one who can tell you that.
So you eat lunch. You watch some t.v. You try to fill your time with whatever you can until the next appointment. But are you living? I didn't. I don't think I lived a single day in between my diagnosis and my official declaration of being N.E.D. I survived. I relied on everyone else for what was going to happen to me, and as the treatment began to take a toll on my body, I began to rely on others to take care of that, too. I fought it for as long as I could, but then it felt inevitable. Can you wash my hair? Help me get upstairs? Pull me up out of bed? Change my clothes? Help me clean myself up? I threw up again, will you bring me a towel? Do you see my pain meds? How am I going to get to the hospital on Thursday? Do we have any soup? I can only imagine what the weight of caring for me must have felt like. It must have been smothering. And me- I was fading into a ghost, having lost everything that I considered a normal life. I hated myself for trying to fight it. I hated how stubborn I was. I hated my body. I hated myself for having succumbed. I hated myself for not being stronger. I hated myself for hating myself. My body was so torn up physically, there was no hope for me to maintain my emotional health. My mental outlook had completely deteriorated with my ability to take care of myself. So this holiday season, I look back at all of it with an honesty and empathy that has taken me literally years to muster. Did my life stop the day I was diagnosed? No, but it did not begin, either. I guess I say this because if you open your heart and love cancer (how bizarre does that sound?) for what it is, it will, in time I think, allow you to find the things that matter most. And that truly is a gift. But that is not an easy journey. Or it wasn't for me, at least. I am so much smarter now. I know that now, I would be a much more active patient- doing my own research and making my own decisions. But even if all that was taken away, even if one day I was rendered completely helpless, I would still be smarter. Because I'd know the truth, and the truth is this: it doesn't matter. It is what it is. Life is life, and you better just take it for what it is. Even when we're "healthy," we can try and fool ourselves into thinking our future is a sure thing, but it never is. It never was, and it never will be. Today is what we get. And that's it. You better make it all it can be and accept it for what it is, 'cause it's all you get.
A while back I wrote about how low I've been. I guess it's time to come clean and just be open about everything. In a way, I look back on this blog and it seems it didn't exist before October 11th of this year. It seems my whole life kinda started the day I really realized how depressed I was. It became about moving forward and getting healthier mentally. Which is good. But to be honest with you, it's sometimes exhausting, too. Maybe I don't have to tell you because you've faced the process before, but if you haven't, let me just break it down for you: it is so overwhelming to look forward into your life and see that the process you are going to have to go through is painful and arduous, but most of all that it could take years before it does not feel like a daily, forced chore.
That being said, irregardless of how bad coming to grips with everything and facing my demons sucked, being healthy and happy has become my number one priority, and so I have learned to love it like a 12-step recovery junkie loves their meetings. It is painful but somehow wonderful. I have begun my journey. I guess that I think part of that journey is telling everyone about it (to keep myself on track), and that include you. See, the deal is, when all of this went down with cancer and I became so dependent on everyone else for my physical care, I somehow got things mixed up and allowed my emotional well-being to be their responsibility, too. I made my happiness dependent on them. Because my happiness was completely in their hands, I had to become really controlling of everyone and everything. I wanted to be happy so I tried to make sure they made me happy. It sounds crazy and it's kinda hard to explain, but that, in a nut-shell, is what has been dragging me down: the exhausting, white- knuckled approach to life. You are probably thinking, as a good friend said to me, "Honey, cancer didn't teach you that trying to control life doesn't work?" Well, no, I guess not.
So that's me and where I am. Tomorrow starts a new year and it seems appropriate as I've already begun the transformation of a new and better me. I think the best part about all of this is the humility it has brought me. Nothing in my life has been as freeing as it has been to allow everyone to see how flawed I am. It is truly amazing to be as transparent as I can be and still be accepted and loved. I never want to be the other way again.
So, after that 8 minute rant, I was really leading to this: I learned it's okay. If I am or you are depressed, it's okay. If I can't or you can't seem to pull yourself out of a funk, it's okay. We don't have to hide it or be ashamed of it. A few weeks ago (the day after my birthday) I said I'd finally come close to forgiving myself for my dichotomy. Now I'm like, forgive? For what, being human? Where in the world did I get that stupid idea.
Anyway, that's the dirt. Now you know. Someone call National Enquirer! :)
So on this Dear God site, people write in their prayers. It's a crazy experience to read other people's intimate prayers, especially the ones from people who are so hurt and so angry. And there are a lot of those, as, in these days and times, you might expect. But then, I came upon this amazing prayer below, which totally lit up my day. And he's here in Dallas! One more reason to be happy, people. I am overwhelmed by the humility, patience and love he has for each moment and for himself. I can only aspire to such, but maybe one day...
Dear Universe,
It is with a heavy, exhausted heart that I say, “thanks”. Deep in my heart I know that I am feeling exactly what I need to, in order to move into my next moment. Sometimes I try to force myself into the next moment quicker than time (your heartbeat) wants me to. You want me to enjoy and learn from each beat. I try, each day, I try. I am also trying to not turn the hands of time backwards. I know, each moment is precious, and I thank you for that. That, and all of the people, experiences, good things and bad things that are part of each moment, I am thankful. From these people and things I learn - I try to take the good forward and leave the bad behind. Thank you Universe for all of these things, including my very tough day today. I love you and me.
In college, I wrote a short story one time about a road trip I took by myself. On the Road had always been a favorite, and when plans fell through with everyone else for a trip we'd planned, I decided to just go solo. I ended my travel story (of course) with a bit of cliched enlightenment:
"... after a few states and many miles, here's what you come to figure out: people are just people. Some live close to the freeways in dustier and smaller houses, and some live in big, lonely ones that can only be found while exasperatedly lost in the suburbs. But there's a vein that runs through all of us, whether we dare to admit it or not, and the blood that's pumping in it is our commonality. We're more alike than we are different. For a lot of us, that's scarier than the thought of being isolated. Because to admit that we're all just people is to dive into a place where others understand and have felt our own vulnerability, and where we can share little delights (like traveling to a new place) and make those damn emotional investments that our paranoia tells us are the next heartbreaks. We can't view all of life as simply as we see the houses from the freeway, but we can step back and take solace in the fact that no matter our differences, people are still just people."
It's true, isn't it? How often have you met someone famous and walked away thinking about how surprisingly normal they were? I have to remind myself of that all the time, because somehow just because a person is legendary or well-known doesn't mean they don't struggle with all the things the rest of us struggle with. No matter who you are, life is good, and life is hard.
If you life here locally, you probably saw on the news about Erika Clouet dieing in a car wreck on Labor Day. Erika was a teacher at my school. She was a newly-wed July bride, and she was 24 years old. I didn't know her well at all, and in the 2 years I knew her we probably talked a couple dozen times. But I will say that she was one of those people that you think about being a genuinely nice person. The wedding picture they keep posting in the news is one she never saw; her wedding pictures arrived the day after she and her husband were hit and killed by a drunk driver. This was the driver's fifth DUI. I don't really know if her death is any more or less tragic than the other young people I've known whose lives were taken by cancer, but it's really not the point. I just know this: Life is hard.
You've probably seen that Leroy Sievers died, too. It's a terrible loss. It's all so terrible I can hardly stand it sometimes. I try not to think it's unfair or it shouldn't be this way, but over the couple of years that I read his blog, I felt I had come to really know him, and his dieing left a surprisingly sharp pain. He made a conscious effort to be very open and honest about his feelings on his blog I guess it's no surprise that so many people have expressed feeling this way. Through his journalism he had covered 14 different wars, including Afghanistan and Iraq, but he said that his blog was the most important work that he'd ever done. He opened up a small piece of society by starting a converstaion about sickness and death, and he united thousands of survivors and caregivers under the guise of his daily posts. When someone asked him what he got out of his sometimes heart-wrenching blog, he wrote, "A daily reminder that none of us walks this road alone. What could be better than that?"
In the last 6 months, as he neared the end, it was more and more difficult to force myself to read his posts. When he sold his Jeep, that was when I knew he had come to terms with the end, and I stopped reading all together. I'm sure that some of this stemmed from my similar experience with my dad, who did a pretty good job of keeping hidden how ill he was until close to the end. The little clues would slip out, like red flags, telling me it was time to see things for myself. Regrettably, I didn't pick up on these fast enough. Fathers always seem so invincible, I guess. And like Leroy, to think of them as just as vulnerable as the rest of us will nearly break your heart.
The last few years, sometimes the loss has seemed like too much to bare. Losing Leroy, this person I never talked to, never looked in the face, never once met was not as sad to me as the other people I've had to say good-bye to, but I think served as a reminder that these things never stop happening. The end of life is an essential part of it, and though some of us are able to live in a world where reality is far enough out of eye-sight to ignore it, it still continues on. Life is tough.
Strangely enough, during this weird time, I've recently seen that I've taken a step onto a new emotional plain in my personal life. It has been a long time coming but I've progressed to a level of openness and vulnerability that I haven't found myself on in a very long while (think high school). That sounds much more dramatic than it is, really, because if it weren't for my seemingly unexplained feelings of fear then I probably wouldn't have even realized that I was in a new place that I didn't allow myself before. When these things happen it is always both shocking to find one's self here and simulateously frightening how long I denied being elsewhere. And that I denied that I could actually allow myself to love more than I did before. As many times as I've written here that there is little other choice than to live this way, it is definitely easier said than done.
Believe it or not, I think this is the "life is good" part; this is the silver lining. Like Doc Paskowitz said, "It's easier to die when you have lived than it is to die when you have not. So I say to all young people: go make beautiful memories. And when the time comes for you to go, you will not be alone." It's so difficult to get to the edge and take the leap, but it's also what life is about. So I'm trying to follow my own advise and to live in spite of the fear, in spite of the pain, and in spite of the sadness.
With the death of those around me, I want to soak up the grief and live with it, because fearing it and stuffing it down will only kill a tiny part of me. But I also want to know, at the end of my life, that I didn't allow that sadness and fear to stop me from feeling the love that I feel today. Yes, it's the scariest thing I've ever felt, because it means if I'm hurt, it will nearly devour me. But I guess you can't only make good memories. So in order to make any memories at all we have to embrace it all, even the darkness. And look for and feel the connectness between us all. That is what keeps us sane. That is what living is.
I was reading on "My Crazy Sexy Life" just yesterday and found an entry by a woman discussing her cancer journey. She said that she had noticed an emotional cycle that she follows, where she is good with her diagnosis/NED status for a while, then she's anxious, then mad again, then depressed, then feels good for a while again, etc. It's good to read other stories like this, because I know for even the most seasoned survivor, the thought of all there is to deal with continually, while trying to lead a "normal life" can be so daunting. The scans and the waiting for results, for me, are especially killer. But then I was listening to Elizabeth Lesser on the radio yesterday, and she made an interesting point. She said that we have to think about life as if it is a river, and we can fight it the whole way, trying to get upstream against the current, insisting that things go our way, living in a constant state of struggle. Or we can succumb to the river, let go, float, enjoy the ride, and accept where we are being taken. It is all a choice. It's so easy to say that- so easy to say let go, let go of all the plans you made and all the dreams you had about what your life would be. But when the time comes to fight, to do the awful treatment and have the surgery and spend so much time in recovery- when it comes time to make the choice to continue living no matter the cost- it isn't the picture we had created of our life that we are fighting for. What we are fighting for more days here, regardless of our plans, regardless of whether they are days spent floating somewhere we never planned on going or struggling against the current. And that's the thing that those cancer patients you talk to( -you know, the ones with that light behind their eyes-) seem to have gotten during their journey. That any day here is worth the fight. It's noble and beautiful to come out of the situation with that new view. That every breath is worth a prayer of a thousand thanks.
But how did they get there? To the point where they are really the person that is okay with letting the river take them wherever it is going? Well, according to Elizabeth Lesser, it's really not so hard to be that person, whether we have had a cancer experience or not. And this is what she said that really blew me away: she said that in order to love your life no matter what, that every single day, you have to sit still. And in sitting still, we will be faced with all kinds of things: our disappointments, and anger, or fear, sadness, guilt, or even physical pain. As all these emotions and feelings arise, she said, you take note of them objectively and without any judgment. That's it. That's the key to unconditional happiness.
Because, just like sneaky Mr. Miyagi using chores and car washes to teach Ralph Macchio the art of perseverance, sitting in the midst of our reality and our pain little by little teaches us that we can survive anything and still be happy in the midst of it. When we allow what is to be, then, like you are in the river, you will float along and move through it. Crazy. Why is it when we admit our pain that we move through it so much faster? Because reality pushes on with or without us, whether we live in denial or not? Because struggling against the current is exhausting? Because acceptance saves us thousands of minutes of grief? Because time itself is the thief?
I guess the real answer is who cares why? It just does. The river will take us exactly where we need to go. There are no accidents. Even if we fight it, we are still being pushed to the exact place we are supposed to be the whole time.
And if it's as easy as Mrs. Lesser is telling us, if I can love my life no matter how badly it can hurt, well, I'm sitting still every day. And I'm making it a point to float on my back from here on out.
1. I am in contact with the Too Faced people to get the winner's free sample. It's a Love Lisa Beauty Box and it's worth $32.5o. Quite a cute kit, I've been using one and I LOVE it! Very glamorous colors and it's the softest powder I've ever felt. So as soon as I know hear from Too Faced, I'll put all the names in a hat and have the Boob draw one out. Fair and square! If you want in you still have time. Just email me or post a comment about it and you're in the hat!
2. I may be taking a short leave of absence, like 2 or 3 weeks, from the blog. I must say that when I come here to write lately I have found that I am at a loss for words. I think I'm dealing with something, but can't really go into it here. Let's just say that something is there. And when I say dealing, I don't even mean I'm sad, I'm just really wrapped up in this other thing, so my head isn't here. I figure if my head isn't here, my body doesn't have to hang out and look at the screen. So there's that. 3. Did you hear about the guy with the stage IV melanoma that was cured, using his own cells? Pretty cool- check it.
Dat about do it. I appreciate all of you who have been emailing me and commenting to check on me. It means a lot.
I sit down to write, and the truth is- it's difficult to. I think to myself, why is this so difficult? You love to write. You write all the time. Except, my voice says, you really don't. You only REALLY write when you feel connected.
And the big ball drops in my stomach. And the guilt wells up in my chest.
Haven't we been over this already? We figured this out already. It's already ready already.
It's like all those movies we love: Jerry McGuire and Pretty Woman and Bridget Jones, but in all those movies it's a traditional 3 parts: the set up, the conflict, the nice and neat wrap up. Nice and neat with no strings left dangling, 2 hours and everything is resolved. And I don't have to say that life isn't really like that, because we all know that already.
I heard someone say today that the love we hold back in this life is the only pain that follows you when it's over and you pass to the other side. It's tough to think that- that in those moments when I think, "just say it," and I'm fighting the instinct to be vulnerable- that all those moments are the ones that will follow me after death.
Allow me to just state the obvious here: life is messy and just like my day today, never wrapped up nice and neat. And the truth is, as much as I hate to admit it, I face my fears every time I sit down to write this blog, because to write it is to revisit what I thought I was already over.
I'm not over it.
I revisit cancer fears, and fears of morality, and the hatred I have that my body is so vulnerable, and the pain that I feel whenever I think about how my leg will never be the same. I refuse to work out most days because it's so hard for me to mentally deal with the physical pain that I fear will be there for the rest of my life. The limits that I don't want to be there.
And then, like American Beauty, I tell myself to just breathe. And to stop fighting. And to just realize how awesome this one little tiny moment right now is.
And right now is a good moment.
I have so few free moments these days- but there are 11 school days left so there is hope that I'll get back to posting regularly.
But instead of getting all wrapped up in that, let me just throw out the old adage that every moment is the most important moment of our lives, so as I write you and bid you goodnight, I send out gratitude that there are those of you still hanging in there and reading this blog and that I can share that gratitude with you.
For now, goodnight. -MM
"One good thing to remember is that giving thanks- expressing gratitude- generates growth. And one way to ensure that your growth is easy, effortless, touched by grace, is to be grateful for the difficult circumstances and situations in your life. The harder it gets, the more grateful you should become. The more painful you believe it is, the more grateful you can become. And one way is to simply affirm in the midst of your difficulty and darkness I can hardly wait to see the good that will come forth from this experience, and for the strength to endure to the end, I am so grateful." - IyanlaVanzant
I really want this to be an uplifting, positive post. I really do. I've been reading another cancer survivor's blog and I have been so apsolutely amazed by the support she is receiving from the circle of friends that surround her. She writes about what a blessing they are to her, and I can feel the love beaming from the page. I feel loved just reading it, having experienced that kind of love from my friends. I bask in that feeling, because it is so amazing to have the opportunity to see what the people who love you will do for you. It makes me so grateful for the friends I have and have had and the people that have supported me through my malignant melanoma journey.
And I'm sure that I'm like most people. I'm sure everyone wishes that they could go back to the way some things were before they had cancer. I get caught up in the pity. Because, even though I've made it through so much and I've made amazing friends along the way, I still get lonely when I think about old friends. I miss being able to talk to people that knew me from way back, and wouldn't be shocked by anything I did. And I could see so much of myself in them, listening to where they were in their discovery of themselves. I learned a lot about myself and about life just by really hearing their words. I miss being there for someone else. I miss my young friends, who I could always turn to when I just needed to be free for a while from all the ugly things in my life. Free to think about nothing but fun for one whole evening. But I'm so happy I'm starting to see that ME that was here before melanoma. I really liked that girl. She's finally coming back.
I started looking back through old posts, and found several drafts that I never published. This one was of particular interest and kindof hit on this topic. I think I finally have the guts to put it up here. Plus, it's got a positive message, so it's win-win. One less thing.
Enjoy. :) -------------------------------------------------- In the beginning, I was surrounded by people who'd say, "We're gonna beat this thing!" and we'd rest assured knowing that I was tough and I'd never let cancer take me. And I think that's how it works: you actually believe in your heart of hearts for a while that your own strength and determination is all you need to survive cancer. And then you come to a point where you just pretend that it is. And then, as time went on, I think we all saw that it was not a fight to survive; rather, it was a war. Ongoing battles, one after the other, all deteriorating morale and forcing us to question our ability to go on.
When treatment began, slowly, those people who were so gung-ho to fight this with you were reduced to bystanders while you lay in the hospital bed waiting out treatment or the side effects. And then you begin to understand that no matter how much they want to fight this with you and be there for you, YOU will be the one who has to do it. You and only you. You will have the i.v. in your arm, you will feel the all the aches and pains, you will be reduced to something you never imagined, and you will be the one sitting in the lead room waiting for the next test. And when the realization of how things really are comes to you, it will be you who will sit in that MRI for next two hours with just your thoughts. And then they begin to realize it, too. And that's when the first big change takes place, and the ones who can't stand the helplessness that they feel begin to fade like the fog does at dawn: quickly, but in a way that no one notices at first, with it all suddenly becoming clear. I look back at those times now, when I first began to feel lonely, when I was so confused and hurt by what was happening, and I wish the Me now could've been there to explain. Because now, with some time out from under the cancer cloud, now I feel so sad for them, to be faced with such a scary thing, and to feel so much terror that they didn't know what to do except pretend that it wasn't there. I don't blame them for pretending it wasn't there. Then I think of the ones who didn't run, and how sticking it out beside me was rewarded by the anxiety of abnormal results of labs, regularly scheduled scans, more scares of recurrences, more tests and surgeries and terrible statistics. It's like melanoma was determined to punish them for sticking it out. And I know I didn't make it any easier, with my own depression and mood swings and inability to cope. And then finally, when there was only those last few left standing, they had to live through the threat of moving to a stage IV, and they had to hear those words that meant "if certain things come about here, there will be no more choices." That was the finally agony, watching their faces go through that, and feeling the final, flat pull of distance. Like saying good-bye. And now. Now, if I really wanted to, if I dedicated myself to it, I could actually pretend that none of this ever happened. I could actually go on with life and act like I never had to survive cancer, and that things like that could happen to other people, but could never happen to me. Some days I wish I could really do that, or at least, as a dear friend says, I wish I could "pretend to pretend." However, once again, out from under that dark cloud of recurrence and the depression that comes from an incessant "what if," now I see everything so clearly, and most days I don't even wish that I had never heard the words "you have cancer." And that's when you know that you've truly made it through. Do you know what it feels like to finally say that and mean it? Boulders, mountains, continents off my shoulders. I can't believe how much clarity I've achieved just over the last couple of months. It's amazing how much a little alone time has allowed me to heal and to really come to terms with big ol' melanoma. I won't say that things haven't been tough. But I will say that I am blessed to be alive today, blessed to have lived and blessed now to "have arrived." Blessed for the lessons. Blessed to have the knowledge that so many don't have. Blessed to be able to be there for so many people. Blessed to have seen every friend who was there and every one that wasn't. Blessed for my experiences.
I've made peace with my new life. And I've made peace with what my body has put my loved ones through. I never would have chosen it, but I'm glad it was chosen for me. What a blessing.
My mind is saying, "Just write," even though I don't quite know how to say what I want to say. I thought I'd start this post like most bloggers this time of year, writing about my resolutions and everything that happened in the last year that I learned. But what is really on my mind is faith. Faith not exactly in the religious sense, but more of in the confidence or trust sense. Like the way that I have faith that the sun will come up tomorrow. It's not something I question, and it has nothing to do with spirituality. I know it through and through without any doubt that the sun will be there when I wake up.
The question I suppose that you're asking yourself is why is faith on my mind today. Or, maybe that's just my question to myself. To be honest, I'm not sure. Even if I am thinking about it, I generally a.) am not religious or outwardly spiritual and b.) not open enough about it to post it on my blog. Yet lately, I can't get it out of my head. I've been thinking alot about what I know for sure and what I don't know. About the old me. About what I used to feel like I knew and what has changed. About how facing the possibility of death changed all that. About purpose and hope and about faith. I guess, also, I've been thinking about faith because of pain/health issues lately, and the way I feel like I am being tested by them. I know that sounds a little cheesy and confusing, but let me explain. If I was pre-cancer me, I would say that everything that has happened to me, everything good or bad that I have experienced up until this moment, had happened for a reason. Like fate. They were all experiences I needed to have in order to learn the lessons I learned to be the person that I am today. No regret or grief, just acceptance. And pre-cancer me would say that this very moment I am experiencing right now is the only moment I truly have. Even in this moment, anything could happen to me, but I can control how I react to whatever happens, and that is all I need to be concerned with for now. From this moment, I can go anywhere I need to go in life. And if my life were to end 2 minutes from now, well, then, at least I appreciated living in this moment up until my last breath.
I look back now and miss that peace that pre-cancer me had. I realize now that (perhaps stupidly) I feared so little then and I had so much faith in what I believed. I knew each moment was precious, and I tried to really soak it up and appreciate it for what it was. I remember a particularly good time in my life when I had a big window in my bedroom. I used to wake up in the morning and feel so lucky to be looking out of that window, to have the opportunity to appreciate the sun on the grass or the rain falling or whatever happened to be going on right then. I remember I used to say a silent little prayer of thanks for that opportunity before I even got out of bed and started my day. I felt happy just to be aware of what was going on outside that window.
That was pre-cancer me. I was a pretty content person back then, and I think a lot about my old thought patterns. See, the thing is, I've realized recently that there was nothing I had before cancer that I don't have now. All the possessions, all of the love, all of the friends, everything-- I have as much now (or, in actuality, more) than I did back then. I think about that and I know I need to get back to thinking that way. That was the only difference for me- the way I used to think about things. For that reason, I've been thinking about pain and illness in a new way, like, "what am I supposed to be taking from this? Is this supposed to be a lesson I'm learning?"
A funny thing happened a few weeks ago. I was telling a new friend about my cancer experience, and when I had finished telling her, she said to me that since I am still here today, I must be here for a purpose.
Now, to believe privately and personally that each of us is here for a reason is completely different from hearing it from someone you barely know. For one thing, it's frightening to hear it. It sets up an expectation that you have to achieve something grand, and yet you have no idea what that thing is. And, for another, to have the kind of courage to openly state such an intimate detail of one's personal beliefs without any reservation or fear, quite honestly took me aback. Even if I did know how I felt about it, I don't know if I would've had the nerve to have the conversation with her.
So later, alone, I thought about it. Do I believe that, too? Are we all here for some divine purpose? And pre-cancer me answered, "yes." To which present day me said, "Oh, well that's friggin' great. Sorry, it's not my day to care."
I'm not sure what any of that has to do with my current health issues. I've been keeping a chart lately of my pain level just to see what it's really like. The chart has the hours listed throughout the day for each month, and when I'm in pain, I go to the chart and type it the level from 1-10. I think I have put this off for quite some time because I was hoping sort of foolishly and naively that maybe it would all just kinda disappear and I wouldn't have to deal with it anymore. But the results are in, the votes have been tallied, and I'm sad to say that the reality is I am in a good deal of pain and/or malaise on a regular basis. Bobby probably could've told you this months (or maybe even a year) ago, but hard-headed me has insisted on keeping up the pretense that "I'm fine" and/or "Everything is fine." That being said, I feel like now that I can admit that I'm experiencing this pain, maybe I can move forward with it. Maybe now I can deal with the reality and gain what I'm supposed to gain from it, which is, hopefully, the ability to live fully in spite of it.
I saw an endocrinologist on New Year's Eve (before the partying began, luckily) and although I am hopeful that all of my issues have been because of one little gland, in all actuality I think that I need to prepare myself if that is not be the case. I could be wrong, but she was very candid in telling me that Interferon has a way of causing "a syndrome of chronic fatigue for periods of time that are indeterminable." So, in other words, this may be an endocrine issue and I guess it may not be. And, if it's not, it may get labeled as depression (every doctors' favorite "I have no idea" answer) or chronic fatigue. I'm already being treated for depression, and although I know that chronic fatigue is finally being accepted as a real condition by doctors, I also know that treating it is still an art form that takes a lot of trial and error.
I guess what I'm trying to say though, is that either way, I'd like to be okay with this. I'd like to be able to say that I am mentally and emotionally going to be able to live my life fully, no matter the condition, even if I am not able to physically live fully. I want to be that way. I am hoping that my new goal to view things as more of an opportunity than a burden will help me get there. Because in all honesty I'm not that cancer survivor that says they have learned so much from their experience and diagnosis. I still get mad in traffic, I still dread Mondays, I'm less "enlightened" now that I was before. But I really WANT to be that happy cancer survivor. I've had my time to grieve and I'm ready now to be the person I want to be, to live each moment fully again. And I think that if I can do that, then maybe I'll remember what it was like to know that I had a purpose here. I want to feel that way again, to feel optimistic about my life and everything that has happened. To be OBSESSED with living. And to not only fulfill my purpose, but to appreciate all the moments in the quest to find it. And to wake up in the morning and say a silent prayer of thanks every day.
I'm just hoping that if I want it this badly, then maybe I can make it so. That's what the old me would've said, at least. So, for now, that's all I'm going to let myself believe.
This. This being "sick" all the time. This swelling in my leg everytime I work out. This pain in my muscles for no reason. This having to plan weeks ahead if I want to do something fun, so I can take it easy and then be sure I can go. And then not even being able to go sometimes. This fatigue and weakness and joint pain, a year and a half after Interferon.
Seriously? This is what you're whining about.
I know, I know. I'm actually really lucky.
Yes, you ARE very lucky. People have died. And you whine about this?
I know. I'm sorry. But this is not how I live life. I'm a totally different person b/c of all this stuff that's still wrong with me. I have a right to be sad about still being affected by cancer every day.
I can't believe you're still whining about this. You're alive, for God's sake! You're lucky to be alive!
I know I'm lucky to be alive, but can't I just grieve this? I feel like I have a right to grieve this.
It's time to move on. Let go of the sadness and be that person you used to be, that could see the good side of life. Think of how blessed you still are.
Oh, good grief. What do you know? Get off my jock already.
Hmp. The nerve of some people.
(wow, what an appropriate comic!)
"We're here to face another day. Good day or bad, easy or hard, that's a victory in and of itself. I don't think I need to say any more."
This is going to be a short post, but I'm hoping by posting this that maybe I can motivate myself to write here again. I've been having a lot of trouble getting myself to post here, and I finally came to the conclusion that it's not so much busyness or laziness as much as it is me not wanting to talk about things that I'm just now figuring out that I'm not wanting to talk about. I'm good, just taking my time about getting around to those feelings. It's not that I don't love you-- I love each and every one of you that read this deeply and somewhat inappropriately. Nonetheless, I'm a little withdrawn. But I'll keep you posted on the emotional progress I intend to keep making.
Okay, yes, it's been a month since I posted. My bad and all that. But hey, it's summer. And although I'll try and make sure it's not another month till my next post, I think we should all just keep in mind that THIS is what I love about summer: living life is getting in the way of everything else!
I can't tell you what it's like to have this time to recoup- to get some real rest, to get my filthy room clean, to have the time to learn the very beginning steps of playing guitar, and to find out what other things I like to do when I've been threatened with my life not to run. But it's been fun having free time and de-stressing, and I can honestly say I'm enjoying everyday. It's going by fast, and I've been busy, but in the way that one likes to be busy. Just busy enough to stay sane. But wait, there's more- the good stuff just keeps on coming- I leave for San Diego on the 18th, and I'll be gone at LEAST 2 weeks. A full blown hiatus. I'm warning you now, I may not come back.
It's been pretty great since the surgery. I look at some of the pics from the hospital, and I realize that most of that stay I don't even remember. Who loves good drugs? But ugh- look how puffy and pale my face was! Talk about needing a makeover. Thanks, by the way, once again, to all of you who sent cards, flowers, prayers, and positive thoughts my way while I was there.
Once I was home, the first week went GREAT. I recovered way faster than I was thinking I would. Then, the next week, the lymphadema in my abdomen set in. It really hasn't been too bad since then, it was just that week getting used to all that fluid in a pretty condensed spot. It felt like a can of Coke under my skin, a pouch on my right side between my old scar and my new one, and the pressure and skin stretching to adjust was pretty uncomfortable. After that week, though, of having to take it easy and stay off my feet, I've had very little pain. Just some after I work out (in small doses) and minor discomfort at most the rest of the time. I am having to wear a compression hose around my abdomen, but I can't really complain. I mean, first of all, I don't have melanoma, and second, I look really fabulous in granny panties.
These summer days have obviously also given me reflection time, and I feel like I've started to recover from the emotional toll of the last 2 years. It's all kinda getting sorted through. It took a while for Bobby and I to really accept the good news without looking for an "except," but it seems now that, (at least I think) we really do understand that the pathology report is a reality. The illiac node was just "reactionary," inflamed from a staph infection I got almost 2 years ago. Negative for melanoma. And that means that, in a way, I've been given what essentially feels like a second shot at life. Not that the first one was ever really gone, but it just seemed to be living under a dark cloud. I can look back now and see that, and see that I put that cloud there and it was me that kept it there. I don't really know what to say about it except that, and to say that if I was in the same situation again, I would hope I could fend off the depression. In the midst of it, though, it's tough. And I'd never fault someone for feeling that way in the midst of so much uncertainty.
I've told this story probably 193 times since I've been out of the hospital, but I went in to the operating room knowing what my chances were of coming out of it with no melanoma. These last 2 years, I've gotten pretty used to the idea that bad news can be the reality. After hearing the prospects of surgery, I was really just hoping for the melanoma to be in the node, and not metastasized elsewhere; because the reality was, at least according to all the opinions I got, there was a fair chance of both. Having it elsewhere, well, that would've put me at stage IV, which is certainly no death sentence, but it is a progression of disease, and, just so you know, that's not what we're going for. Now, knowing it wasn't even melanoma to begin with, it's like looking at life through totally different eyes. Should I have had this kind of hope the whole time? Oh, yeah, definitely. But I didn't, and even when I tried, I couldn't. This NED, it's a gift. It's pretty incredible.
It took me forever to send out thank you cards (and post a blog, now that I think of it), and I couldn't figure out why I was dreading it so much, but when I finally sat down to do them I was filled with what I can only assume was anxiety. Why? I'm not sure, but I think it was just facing what could have been. I would like to say that I have learned through all this to face my own mortality with grace, but the truth is I'm not sure I wouldn't begrudge every moment of it if it came down to it. And yet, I don't see myself with the will to fight like Sarah did, either. She was incredible, the way she never gave up and kept looking for ways to fight the disease. Strange to see me as somewhere in between. It's out of my face now, giving me some breathing room, and yet I still feel like I need to see it there, in the distance. This is what so many cancer survivors call the gift of cancer- the awakening of our impermanence and therefore the overwhelming realization that moments are so precious, and we should do all we can to savor them fully. With all that in mind, I've made up my mind about a lot of things in my future, and I feel so much more confident and secure just being in my own skin. It's been a good month, people.
I'll spare you the sappy poem someone sent me, just know you should all be grateful. And, can I just say one more time, thankyouthankyouthankyou to every single soul that ever took the time to read this blog and think a positive thought for me. I am really so blessed.
Well, my 5 day stay at the hospital has come to an end, and the news that seems so unlikely and too good to be true turns out to be real afterall. Free and clear. No melanoma.
It feels- amazing. Amazingly like it used to before I knew what a cancer diagnosis was like. Like I went and had my first mole removed and the path report was negative, and now I can go on with my life without the worry of all the stuff that coulda been. Like life never got scary. Amazing. I still tear up when I talk about it.
Now, I know that I'm still a survivor, and I still must be vigilant, and I know all that comes with that. I'm sure that in a few weeks or months when it's time for scans again, that I'll be scared until the results come back, and that I'll still panic over new moles or strange pigments or funny aches and pains. But I feel, today, like I've won the lottery and I've no limit to what I can do with the gift I've been given of "no evidence of disease." Free and clear.
And, yet, of course, I am hurt, too, by the fact that we have all lost Sarah. I simply can't believe she's gone.
Since February of this year, I have lost four people to cancer. I can't say how it hurts to write that. Cancer is almost always a whirlwind of a mixture of the strangest feelings- joy at the good results, pain with the bad. Grieving the loss of all you had in your life (or at least you thought you had) before the diagnosis, and rejoicing in all you've learned and figured out about life since then- like the precious gift of a single moment. There's the joy of meeting the most amazing people on Earth, making friends across the country, drawing strength from their journeys- and- the flip side of that- is hearing that this stupid disease beat their spirit once and for all.
A few weeks ago, I wrote about Oscar, and I said that my first instinct when I thought about his death was a sense of relief that he was finally out of pain, out of the battle. At ease. And, after that feeling, it was simply a matter of getting past the missing him. I know that everyone that knew Sarah is probably feeling this same thing right now. But I can't tell you how much strength I drew from her advice. And I'm angry in the selfish way that she deserved so much more. I read her blog again and it's like I'm reading the story of a superhero, who put her private self out there so other people could learn. Amazing how she never gave up and she fought her way through the system to make sure she'd find a doctor who would treat her to fight melanoma till her last breath. And now that she's gone, it's stranger than ever.
So, again today, is the whirlwind. And I am just soaking it all up- the ache for Sarah and Derek and the joy of the gift that I know I have been given. It never makes sense, but I think to seek reasoning or consolation or an explanation is only inviting a conflict that I can't resolve.
Once again, no tidy wrap-up, but a quick petition to the higher power that is (or is not) ruling all this: thank you for my time knowing Sarah, thank you for lending Sarah to the world for a while, and thank you for the grace I've been offered, too.
Thank God for my job. I say that because lately it's been the only time I don't obsess about whether we'll do radiation or surgery. Not that it matters, really. Why am I so concerned about this? In a way it feels silly. I mean, it's not like I'm sitting around waiting to find out if I have cancer or not. The truth is, I know it's there. And I feel like we'll do whatever it takes right now to get rid of this, and then continue to be vigilant and fight it whenever (did I say whenever, I meant IF ever) it comes back. When I say it like that, it seems like no big deal. And yet it's eating up my thoughts, always there in the back of my mind, nagging me. Like a big, "What IF?" The crazy thing is I've never felt like the what-ifs in life were worth pondering. Why waste that energy? Now, it feels like it's all I do. What if..... That's different for me, as a person who has lived her life fairly fearlessly up until now. I've never been much for limiting any activity due to fear, including things that I probably should've been more afraid of. Maybe I've been in denial this whole time, acting like I'm immortal, acting like nothing can hurt me, diving into the moment despite the little fear that was there. It's worked, though! I've always felt very alive, and now, here I am, realizing just how human and fragile I can be. And it's overwhelming, of course. I try to just be myself and at the same time grasp these new feelings. Sometimes I'm a basketcase. I cry at the drop of a hat. I cry in the bathroom at work. I've had the same headache for 3, 4 weeks now- the type of headache I have to take Vicodin to get relief from. But, it's a process. I'm working through it. I'm a healer, I'm healing. I'm a freakin' machine. A healing machine. Bobby and I had an argument yesterday- ok, more like a disagreement- about vacationing this summer, and I swear I thought I was losing my mind. We had essentially decided that plans we've been making all year are not going to happen. I felt like we don't even know what we'll be doing in the next 5 years, how many times we'll be fighting cancer, when I'll have to be in the hospital, when we'll have another chance to just go and do. I threw a fit. Do you know how long it's been since I pulled a "I'm locking myself in my room" fit? High school at least, maybe even jr. high. Good God. I really did come near to a break down. And I finally just let myself cry and lose it and feel sorry for myself, and after about an hour of that, I felt better. Like way better. I don't know why I fight being so human like that, but it's ridiculous. If I would just accept my feelings for what they are, it'd be a whole lot easier to move on from there. Just a bit of advice for the rest of you Wonder women out there. Thank God for Gilda's Club. I come full out on Thursday and say I'm happy my cancer is back- o.k., not happy, but you know, relieved- and almost everyone in the room said they knew how I felt! Where else can you get that? I don't think I could even pay a room of people to be that convincing. Thank God for all of you. I really don't know what I would've done if I hadn't had so many of you writing me, calling me, posting comments. Emails full of advice. Emails that brought tears to my eyes. Emails from complete strangers that offered their home to me and old me their own stories that are so similar to mine. Beautiful stories of hope. I sincerely can not thank all of you enough. I can't list all 109 of you right now, but just know that you're loved.
More scans have been ordered. I'll let you know what they say. Thank you again for all that y'all do.
