Wednesday, February 29, 2012
As I was on my walk around the block tonight, I realized that my last appointment with them was on 2/7. It will have been more than a month between appointments. This blows my mind. On the one hand, I feel like it's been an eternity since all of this doctor-visiting madness started up again... on the other, it feels like just yesterday that I was meeting/proposing to my new doc.
Time is such a fuzzy thing to me right now. I'm pretty sure that's a side effect of living a life in limbo.
Anyway, I'll go see the doctors next week. This will be good. I'll get some more information. Most likely not any plans for surgery, but I'll at least find out how much my little guy has grown and I can get some answers to a few questions that I've had. (Yeah, I've been working on a list of questions for almost a month now. Those poor men aren't going to know what hit them.)
All in all, today was a good day. Nothing too traumatic happened (I came close to burning my mouth on my lunch, but I survived, unscathed), and I (finally!) have official doctor appointments again. Wahoo!
Tuesday, February 28, 2012
Stuff I really, honestly meant to do in February but didn't:
* Clean the bathroom
* File my taxes
* Mop the kitchen (or at least Clorox wipe the apple juice that I spilled over the weekend)
* Take another load of clothes and shoes to DI/Goodwill
* Reorganize my storage shed
* Research my 401K
* Vacuum (this, as we all know, is a constant thing that doesn't get done)
It's a true story. I didn't vote. Why? Because I didn't feel like I knew enough to be an educated voter. I don't have TV anymore, so I haven't been able to watch any debates. I've been meaning to do some research and read up on key points between candidates, but I can't really do that while I'm at work, and I haven't had the energy to put into a good research project after work. I can't in good conscious vote for someone without knowing enough to really have an opinion. I hope that my fellow Republicans can forgive me for not voting.
Which, of course, reminds me of a scene in You've Got Mail:
KATHLEEN: I have something to tell you. I didn't vote.
KATHLEEN: In the last mayoral election, when Rudy Giuliani was running against Ruth Messinger, I went to get a manicure and forgot to vote.
FRANK: Since when do you get manicures?
KATHLEEN: Oh, I suppose you could never be with a woman who gets manicures.
FRANK: Forget it. It's okay. I forgive you.
If it helps any of my Right readers come to terms with this, I will tell you right here and now that I do paint my own nails. I say this, so we're all clear on the fact that I only have to be forgiven for not voting, and not for not voting AND for getting a manicure. (I figure this puts me half a step ahead of Kathleen Kelly.) - Of course, this means that I don't have a good excuse for forgetting to vote. I didn't forget. I just didn't vote. Why? Because time just got away from me. Before I knew it, election day was here and I'm not any smarter about candidates than I was a month ago.
And there it is, folks. I didn't vote. I felt like I had to take a pass on doing my civic duty, because I hadn't done the work, and didn't know enough to form a proper political opinion. ... I blame the cancer. (It takes the blame for a lot of things, I know, but I swear that this is really and truly a cancer-connected issue. Never in my life had I missed an election until I had to deal with this stupid disease and the emotional and mental fall-out that comes of having other things weighing on my mind and taking up my time.)
I guess what I'm saying is... Don't hate me, my Republican friends - hate the cancer. Hate. The. Cancer. (Also, any Democrats out there... you can hate the cancer, too. I mean, it's a free country and you don't have to side with me, but I figure that cancer needs all the bad ju-ju it can get, so I vote for us all hating it together.)
Saturday, February 25, 2012
Things I've learned (and/or remembered) this week:
Prayer is a real help - not just when other people pray for me, but also when I'm smart enough to follow the spirit and pray for my own self.
I sort of hate the way that MD Anderson schedules things. (Their scheduling department scheduled a battery of tests for Wednesday morning, starting at 8:15 that will last until noon-ish. Mind you, these are all fasting tests, so I would have to fast until noon. (I don't fast, people. The only way you're gonna get me to not eat for two meals is if I've recently had surgery and am on the ice-chip-only diet for lack of my system being able to process food.) Also, I had told them right up front that I'd need a Thursday morning appointment for the scans - not Wednesday - and a Friday afternoon appointment for the follow-up with my new doctor boyfriend and his surgical sidekick. None of my scheduling wishes came true. None of them! ... Don't you worry, I've put in a request to amend the appointments to the Thursday and Friday of the next week, with the hours that will work best for me. I'm just saying that I remembered that I don't love their scheduling desk, because they just made the appointment without calling me to discuss what days and times would work best for me. Grrrr.)
Downton Abbey is the best period drama ever. (Seriously, ever. I had a sick day from church on Sunday and whipped through season one in one day. I spent the rest of the week watching season two here and there, wherever I could justify fitting an episode in.) Maggie Smith, as always, steals the show. My favorite line from season two (and new slogan for how I'm gonna tell people to stop whining): "Don't be defeatist. It's very middle-class."
I have the best friends ever! This, of course, is not news, but I was able to spend time with Jo, Whitney, Emily, Liz and Annie on different days this week. All of that extracurricular time with my girlfriends reminded me that finding time and energy for the people who feed my soul is an absolute must-do.
I really do sleep better when I've taken my sad little body on a walk. (One day this week, I had too much going on in the evening to walk after work and I might have slept a total of five hours that night. Maybe. You can bet that I walked for an hour and a half the next day to make sure I wore myself out well enough to sleep through the night.)
Grasshopper cookies really aren't as good as Thin Mints. As I was choking them down last night, I was thinking "these are a poor girl's Thin Mint". (Don't worry, I'll still eat them, even if I don't love them. I'm sick like that.)
So, it turns out that I did have stuff going on this last week, after all, even if I wasn't writing every day. (Downton Abbey, I blame (and thank) you for having been my escape from reality this week. I'm pretty sure that I had to buy a new box of popcorn because I spent so much time in front of the TV this week and didn't cook an actual dinner even once.) It's been a rather numb week. I haven't really had any major come-aparts, which has been a nice change of pace. I seem to be on a one-week-on-one-week-off schedule for the crying fits. The upside of the days/weeks that I cry a lot is that it wears me out, so I sleep a little better. The downside of the crying is that my nose turns red and swells a little. (Just call me Rudolph.)
I'm just over six weeks into this diagnosis. I'm starting to think that I may need actual sleeping pills (it's on my list of things to talk to the doctor about), but now that most of the chemo v. surgery drama has shaken itself out, I'm getting used to this being my new (or at least, current) "normal" and am now working on finding a groove.
Yesterday was a pretty craptastic day. (Also, the "maybe you need to try harder" coming at me from all angles wasn't helping.) I mean, work-wise, yesterday was rough. This whole week has been hard at work. It's a combination of a lot of things: a four day work week (as much as I do love national holidays and the three day weekends they provide, for some reason, that work week after having a Monday off is almost always brutal!), the end of the month creeping up, me not getting enough sleep... There are a lot of contributors. All I'm saying is that work's been hard this week, and yesterday had been particularly brutal. This morning, as I was getting ready for work, I had the distinct impression that I needed to stop what I was doing and pray, and that I needed to specifically pray that no matter what happened at work, that I'd be able to handle it better than I would be able to on my own.
Holy moly, was that need to drop what I was doing and say that prayer what I needed to do! I mean, I not only needed to pray this morning, but there were specific things that I asked for in that prayer that kicked in later in the day. I could not have done this day without having prayed this morning. There's no way that I could have made it without having asked for strength and the will to push through whatever was going to come my way.
I heart prayer.
I heart prayer, always, but especially when I get exactly what it is that I asked for. (Do I get what I want to my "tumor, be gone!" request? Not so much. But, this morning, I asked for the ability to have some perspective and not get too caught up in the happenstance of the day, and I got exactly what I needed. Halle-freakin-lujah.)
This makes me grumpy.
I will tell you why. I do make an effort to do things that are hard. Every day, I do hard things.
*Please note that I know full well that I don't have the corner market on doing things that are hard, or having to live in a body that just doesn't feel great all the time. I'm pretty sure that everyone I know struggles at least once in a while with having the energy (or will) to do the stuff that needs to get done.
Today, I am just really truly and seriously annoyed with this lecture. And the thing is, I know the people who told me this aren't trying to lecture me. I'm pretty sure they're wanting to encourage me, and are probably telling me what they think they would need/want to hear if roles were reversed. It's reminiscent of the lecture of the 2011 (when Tumor #2 made its grand appearance): "Think positive." I hated that damn phrase. HATED IT. (People, I'm telling you here and now that positive thoughts do not slay tumors. Now, I'm never going to discount the power of positivity, and I'd like to think that anyone who knows me knows that I make an effort to stay positive and look for the upside of whatever life hands me, but the cold, hard truth is that positive thinking doesn't make stuff - esp stuff like a tumor - go away. A cheerful disposition and happy outlook make it easier to handle the hard stuff in life, but they don't necessarily make the hard stuff just go away.)
Anyway, I'm annoyed. Annoyed, and glad that I have an outlet here where I just say what I'm thinking/feeling.
Monday, February 20, 2012
Gosh, I love your friends! I can't even tell you how grateful I am for the network of people you are surrounded with. Good people who LOVE YOU and show it in so many ways. The support and the caring, the lunches and prayers, the blue ray player and the flower trimming. Seriously, bran muffins, M&M's aplenty, foot rubbing and celeb valentines! Who gets that? Cancer Girl, apparently. I'm so grateful for the people who can help smooth part of your road. You have to walk it, but you don't have to walk it alone.
I love you so much.
How much do you love that my family and I now affectionately refer to me as Cancer Girl? I think it's pretty great. (Gone are the days that my nickname was Miss Muffett, is what I'm saying.)
As much as I do love my new nickname, I love my family and my friends even more. It is true, I have had people send me: flowers, jewelry, bran muffins, M&M's, books, gift cards, nail polish, European chocolate, fancy cakes, warm socks, funny cards, and so much more. I've had people: pray for me, wash my dishes, do my laundry, clean my bathroom, buy my groceries and drive me all over the blasted city. I've received countless packages, letters, emails, phone calls and texts. I've had family and friends travel hundreds of miles to spend a weekend, or even a day, with me. There are women in my ward, friends who live just around the corner, who have asked their husbands to stay home with their small children, so they could come and spend an evening in my home without any distractions. I have lunch or dinner at least once a week with a friend who wants to check-in, to catch up, to make sure that I know that I am loved (and well fed).
I have a lot of people in my life who want to make sure that I know I am loved, cared about and prayed over. How you show your love is different, because you are different, but you have all given me love. And for that, I am grateful.
I am the luckiest girl ever. Truly, I am.
Saturday, February 18, 2012
I mean it, literally... Ho-leee snot!
Just yesterday, I was talking to Genevra about how I'd been numb for the past few days. She'd commented back that sometimes being numb is the biggest blessing, that our spirits are able to utilize that numb factor to protect us until we are at a place where we can start to process what is going on.
People, I am having a processing day. It's not 7:00 AM and I've gone through five Kleenexes. (That's five WHOLE Kleenexes. Not halves. Wholes.)
What's wrong, and/or what's making me cry? I don't know. Nothing. Everything. ... So much for actual "processing", I guess, since I can't put a finger on what started the water works. (Oh, well. The crying got my energy moving around again, and I have to think that's a plus.)
The good news is that it's not a work day - and I have two boxes of Kleenex in the hall closet if I go through an entire box this morning.
We talked about chemo vs. surgery. I wasn't sure that he'd agree with their "watch and wait, then cut it out at an undetermined point in the future" plan (since he's the one who'd wanted to go the chemo route), but when I explained it, he just nodded and said that he wouldn't have thought of that, but he supported it. He looked at me with his kind, happy eyes and told me that he was just glad that they were here now. He said, "It's too bad they weren't here a couple years ago, when this all started to happen in your life, but they are here now, and they will be able to help you. ... And you didn't even have to travel to get to them!" (In the past, he's referred patients to MD Anderson and they had to travel to TX for treatments/surgery. I'm very fortunate in that, by the time that I got to the point that I simply had to go outside the treatment box that I'd originally been placed in, they'd come to me.)
I have been so grateful for a doctor who cares about who I am as a person. I love that he's a bit of a kindred spirit, in that he thinks that timing is everything. He has helped me to see how blessed I have been. He has truly connected with who I am and what I am going through, and I will miss him. He makes me laugh, and as soon as something is hard for me and I start to cry, his eyes tear up, too.
I have absolutely loved my old man doctors (both my original surgeon and oncologist are old enough to be my dad). I told him that I will miss having him be my oncologist, but that having a single oncologist a little closer to my age will help take the sting out of it. He just laughed and said that maybe he should have warned this new doctor that I was coming. ... I told him that it was too late, I'd already (sort of) pounced and ... uh... asked him to marry me. He threw his head back and laughed at that, but he did agree to give me a good personal reference, if he was ever asked for one.
It was a great visit. Full of all the regular high and low points: sitting in the waiting room for almost an hour before I get back to an exam room (this is actually one of the most therapeutic things I do in my life - sit in waiting rooms in oncology offices and hospital wards - nothing makes me more grateful for the weirdie and uncommon strain of tumors/cancer that I have than seeing a half dozen or so patients who are clearly and obviously worse off than I am), having the man mash on my stomach (good news! - the tumor is still small enough that it can't be felt from the outside, even when my stomach and back are kneaded like bread dough), some good laughs and a few tears. I got more than my usual share of hugs from the man, and he told me that I'm always welcome to come in and say hello, even if I'm not technically his patient anymore.
My goodness, he's been good to me and so good for me. The man has let me be silly, and he's let me be emotional. He's been completely comfortable with me just... well, being me. He's explained so much about different kinds of cancers and the treatments for them. I've learned a lot from him, as a patient and as a person. I'm so grateful that the hospital just assigned me to him when I had my first surgery. I don't know that I could have ever found someone as delightful as he has been, had I been looking on my own. He helped me as much as he could for as long as he could, and when he found a sarcoma specialist to take me on, he was really great about getting me over there and letting me go.
I never cease to be amazed at the Lord's hand in my life, esp in regard to the care that I have received. Since the very beginning of all of this, I've been put in the hands of men and women that I felt like I could trust with my life. (Which is lucky, since I do have to trust them with it. Literally.) Do I want cancer? No. But if I have to have cancer (and, clearly, I do), I love that I live in a city where there are incredible resources and medical professionals who can help me through it.
What a fun day for me to check the mail and find that Cupid's Helper (also known as Michelle Beal) had sent me a little V-Day prize!
She sent me a fun (by which I mean: chocolate) filled padded envelope. There were (I counted them) 24 hand-written kiddie valentine cards complete with heart-shaped stickers and creative names in the "To" and "From" fields. Examples:
To: The Great Laurie - From: The Great Gonzo
To: Vous - From: Moi (it was a Miss Piggy card - I laughed - out loud)
(Yeah, they were mostly Muppet-themed Valentines, with some Charlie Brown thrown in for good measure.)
Cupid's Helper was sure to include personalized gifts and love letters from some of my favorite celebrity boyfriends.
To: Laurie Lou - From: Castle Poo (I WISH!)
Who doesn't love an inscribed photo/love letter from Bruce Wayne? (Also, "Bat-entine"? LOL!)
And what may well have been my favorite thing in the whole package:
I. Love. Dan.
There's a real shortage of sweet and hilarious widowers in the world people. Dan's brother Mitch? Oh, there are a bunch of Mitches out there... I've let a lot of them buy me dinner, so I should know. But Dan? He's a one in a million. I'd let him buy me a planet-sized blueberry muffin and tell me stories about his Bonanza lunchbox any day. Amen.
What an interesting (and honest, bless her heart!) question. I will tell you what I told her - I don't wonder if there is a plan. I know that there is one. There has to be, because so much of what happens in my life isn't something that I'd choose. There is so much that isn't rational or logical. There's so much that doesn't make sense and cannot be explained that I have to believe in a greater power, in "a plan". Faith is my only option.
I have to believe that there is a God who loves me, who knows who I am, and who has a plan for my life. I have no other option than to believe that cancer is happening to me for a reason. I cannot accept that this is happenstance, that it is random, that there isn't a grand plan that I am a part of.
I believe that this life is a blip in the timeline of the eternities. I believe that I fought for the right to come to Earth and to live in this body. (Yes, this body.) I believe that, before I came here, I was able to see at least some of experiences that I would have in mortality. I believe that my spirit self saw some of the hardest, darkest things I would need to do while I was here, and that I said I would do them, because I knew that I could. (Mind you, this would be my super confident spirit self, before I knew what it would be like to live in this body - but I have to believe that there is a part of me that knows me better than I know myself, a part of me that knew I could do really hard things, and that I willingly subscribed to those experiences for the privilege of having this body.)
I don't know exactly what the plan is, but I know that there is one. I know the Lord is mindful of me, that He loves me and that He has a plan for my life. I have to know these things, or nothing makes any sense.
We sang Be Still, My Soul in church yesterday and the second verse just reached right out and grabbed me. I've been mulling it over for the last two days:
Be still, my soul; Thy God doth undertake to guide the future as He has the past. Thy hope, thy confidence, let nothing shake; all now mysterious shall be bright at last. Be still, my soul: The waves and winds still know His voice who ruled them while He dwelt below.
I know that Jesus Christ lives. I know that He came and that He lived and that He died for me. I am grateful for the knowledge that the atonement covers not only our sins, but also our infirmities and our sorrows. I love that one of the names for the Savior is the Comforter. I revel in the comfort that comes of knowing that He knows how I feel, that He knows where I have been and, more importantly, He knows where I am going.
Again, I don't wonder if there is a plan. I can't afford to. I have to know. It is my only option.
How grateful I am for friends who ask me questions that I need to have an answer to. I am grateful for clarifying conversations, for the opportunity to reach down deep inside myself and find an answer (and strength) that were there all along.
There's a lot about cancer that is super, duper stinky - but one of the cool things about being sick is the clarity of thought that comes of having to boil down any questions I might have and realize that even if it's cliche, it is true that "with God, all things are possible". (Enjoyable? Uh... I wouldn't go straight to "enjoyable", actually. But most definitely possible.)
A month ago, today, I found out that it was back. Again.
... I'm beginning to get superstitious about this time of the month. (Just kidding. That would be RIDICULOUS!)
Even now, it's hard to explain.
I'd had my scan in late January, but I had jury duty on Feb 4th and my next regular day off work was Feb 11th and I sure wasn't about to waste a PTO day just to go to a doctor appointment, so I went over two weeks between my scan and getting the results. Again, I felt like the results would show something there, but I kept telling myself that I needed calm down, because, surely, if it was bad news, the doctor would call and ask me to come in sooner.
February 10, 2011
I took the day before my appointment off work as a sick day. I'd been feeling a little under the weather, and on the 10th, my stomach was unsettled and that's all the justification I ever need to call in sick. I texted my boyfriend, Clint, that morning to tell him I'd called in sick. It took him a while to respond, which was unusual. When he did, he told me that he wasn't feeling well either.
- And before you get any ideas about us having made each other sick, let me just break right in and tell you that I hadn't seen him in two weeks. We'd had a date set for the weekend before, but he'd canceled because he needed to help his dad with some things. That Saturday had been a hard day for me. Remember, I had in my head that my cancer was back. I'd wanted, desperately, to spend that last weekend with Clint, unaware (or, rather, officially not aware/not "informed") that I was sick again. He canceled late Friday night. I woke up on Saturday, crying. I spent most of the day wrestling whether or not to tell him that my feelings had been hurt. I was giving him the benefit of the doubt that he hadn't canceled for a reason that had anything to do with me. I knew that his dad had a project that he needed help with. I knew that Clint was strapped for cash and it would surely be cheaper for him to stay home with his folks than spend any amount of time with me. (I am not a cheap date, people.) I knew that he wasn't trying to hurt me when he made a choice to spend time with family instead of me. I knew that I was having an emotional reaction that was rooted in fear and not reality. There was no personal affront intended on his end. I knew him well enough to know that he would never hurt me on purpose. ... But I was having a reaction to his not being there. I missed him. Desperately. It was that day that I made the decision that I wanted him in my life - permanently. We'd been exclusive for over a month, and that was the day that I turned a corner from him just being my boyfriend to being someone I didn't want to live without. So, I texted him (because I knew he was with his dad and having an actual talk about how I was feeling would be awkward, if not impossible) and explained that I knew that he hadn't hurt me on purpose, that I knew he had no idea what kind of emotional maelstrom I was in, and that I wasn't mad... but that I needed him to know that I was missing him, that I'd realized that I was totally in this relationship, and that as such, I needed to communicate how I was feeling and what I wanted. That afternoon of not spending time together put us in a place where we spent the next few days having some pretty serious talks about the future. We had (or, rather, he had) talked about marriage in loose terms since Christmas. It takes me a while to warm up to the idea of, you know, changing my entire life, so I had been a little hesitant. The truth of the matter was that I thought I would marry him. I knew it would be a while down the road, which is why I had been keeping one foot on the brake ("why rush into something?" has always been my motto) but I definitely thought that's where it would go.
Clint knew about the cancer, of course. It took me almost a month to tell him. He was the first person I dated after my first surgery and radiation, and I was more than a little gun-shy about having that talk. Cancer is, after all, kind of a big deal. It's not like having broken a leg, or having had surgery to repair an ACL. It's not one of those things that just heal right up, or you have one time and then they go away for ever, like chicken pox. It is the mother of all pre-existing conditions. The type of tumors I get are completely and utterly beyond any kind of human control. There's nothing that I do that causes them to grow, and there's nothing I can do to make them not grow. At that time, I'd been told that I had a 65% chance of recurrence. That's better than 1 in 2 (or, uh... worse than 1 in 2, as the case may be). He found out mid-November that I'd been sick over the summer. When he asked what I'd had, I started to cry. I was so scared that when he found out that I'd had cancer, he'd be out of there. But he wasn't. He wasn't freaked out by it at all, and whenever I would bring it up in discussions of what we'd be looking at if it ever came back, he'd dismiss it. Not in a jerky way, but he'd tell me that he just wasn't worried about it. He truly felt that cancer wasn't a road we'd ever have to go down. I didn't understand (or share) his certainty that it wasn't something we'd ever have to deal with, but I did love how sure he was that I'd be fine.
And now that we've had that small moment of foreshadowing, I'll go back to the story of Thursday. -
I slept most of the day, trying to get rid of a stomach bug and an overall achiness. I talked to Julie, because it was her birthday. Mostly, I just laid low and wondered why Clint was MIA. That night, he popped back up on my texting radar and told me that he'd been down for most of the day, too. I asked if we could talk/talk instead of texting, and he told me no, that his dad was in his room and he didn't have any privacy. That was weird. Totally not like him. I felt unsettled. I'd been thinking about asking him to go to the doctor with me the next day, because if we were gonna be in this serious relationship, that seemed like a serious relationshippy thing to do, but it was his weekend to see his kids and I a) didn't want to interrupt his time with them and b) was a little weirded out by his not having made time or found the privacy to have an actual conversation. I was nervous about the doctor appointment the next day and had a really sort of "off" feeling about the way we'd ended our conversation that night and I ended up crying myself to sleep.
February 11, 2011
At the time, I was working Monday-Thursday, so Friday was my usual day off. I woke up in the morning, still feeling a little weird about Clint, but he was back to texting me his usual good morning text and I figured that was a good sign. I asked what time he was headed up to see his kids, still thinking that I might ask him to come to the doctor with me, but our schedules didn't automatically and easily line up and I figured that was probably a sign that it just wasn't meant to be.
As I was driving to Scottsdale, my cousin Shelly called to tell me she'd been watching a behind-the-scenes special on TV and had thought of me, of my mom, of our grandparents and had just been overwhelmed with a need to talk to family. We talked (and cried) while I drove up the 101 about how grateful we both are for grandparents who taught our parents, who in turn taught us, to love musicals. (Shelly and I are such saps.)
I met my friends Christine and Christian at The Gyro Place for lunch before my appointment. It had been months since the three of us had gotten together, and we chatted and laughed while we ate. The girls asked how things were going with Clint. I told them that I wasn't sure, that earlier in the week I'd felt like we were fast-tracking it to being serious/serious, but that in the last 24 hours I'd felt a major shift. I explained that I didn't know if it was just me being weird about having my appointment, or if there was really something off, but that I felt like we were on the brink of a huge change - one way or the other. (Relationships: they are the best of times, they are the worst of times.) Christian had brought Christine a birthday present, because her birthday was within the week. - She brought me one, too, since I hadn't seen her since October, and she knows that I am a present-loooooving fool.
She brought me a photo box, some sparkly stuff and this blanket:
It's as soft and delicious as it looks, and it's a general fixture in my living room these days.
After lunch, I headed down to the doctor's office. I had my customary 30 minute wait in the waiting room before they took my blood (always wanting to see the red v. white cell count, you know) and then put me in an exam room. While I waiting for the doctor, I texted Clint to check in. He was on the road, over halfway there, and super excited that he'd be with his boys within the hour. I was happy for him that he was going to be with his kids, but sort of bummed that he wasn't there with me. (Not that his not being with me was his fault. I didn't invite him, or ask him to come. That was totally on me and I knew it.) I wasn't angry, just a little sad that I was alone right then. After a few minutes of our texting back and forth, my doctor came in to the exam room, sat down on his stool to the left of me, rolled it forward so he was sitting right in front of me, reached out with his hand to touch mine, looked me in the eye and said "I'm so sorry."
I had been right. It was back.
He had me stand up, so he could touch my back and point out exactly where the tumor was. He explained that it looked like it was on my left kidney, which was just above the original excision point. He drew a diagram on the paper stretched across the exam table, so I could see how big it was in relation to the organs it was on/near. He explained that I'd need to have another surgery, a surgery that may be followed by a round of chemo (much like my first surgery was followed by a round of radiation), but that the determination to administer chemo would be made after my tumor came out. "Right now," he said, "we need to focus on having your lungs checked and getting this tumor out of you."
He asked how I was feeling. I told him that I was not feeling awesome, but that I hadn't been surprised, that I had felt like it was back. This was just confirmation. He asked if he could hug me (the answer is always yes) and then he asked if he could do anything to help me, as a person (I love that I am not just a patient to this man). I teared up and told him that I was almost out of Ativan. He smiled and said "Now, that's something I can help with."
I left his office with a prescription in hand, having made a promise to call my surgeon right away, and made an appointment to come back in two weeks with an update of what had been scheduled, surgery-wise.
I called my surgeon's office as I was walking to my car and was able to get an appointment within the week. I was on the phone with my mom as I pulled out of the parking lot, and we talked as I drove. We talked and we cried, and she promised that she and my dad would help me in any way that they could, and I knew that she meant it. When I pulled up in front of Jo's house, I told my mom that I needed to get off the phone. I needed to go in and talk to Jo, and more importantly, I needed to hold her baby.
- Sally had been born mid-radiation and had saved me from feeling like I was lost and alone. In a world where all I really had was sickness, suffering and pain, a world in which there had been no one to hold me, I was starving for the basic human need of physical touch - until Jo had her baby a month early, and all of a sudden there was this perfect little person that I could hold on to. Sally saved me, on lot of levels. During radiation, when the burns got so bad that it hurt to breath, holding a baby up against me somehow soothed the physical pain at the same time that it fed my soul. She was a helpless little creature who needed someone to take care of her every need, and it helped me to have someone to focus on besides myself. She was a good, sweet baby and her mother knew that it helped me to hold her, so she let me hold her for every minute of every hour that I could, for days and weeks and months on end. -
I needed to go in and talk to Jo. I also needed to talk to Clint. Just then, he texted me that he was with the kids and soooo happy, and asked me how the doctor's visit had gone. I texted him back that it had gone ... not well. I told him that it was back and that I was so sorry I was sick, because I know that it can be a game-changer and I hadn't wanted him to have to deal with this. He immediately responded that I should never apologize for being I'm sick, that it wasn't my fault. He told me that he was sorry he wasn't with me, and sorry that he couldn't talk right now because he had his kids with him. He told me that he was so, so sorry that it was back, and asked if we could talk later. I told him that would be fine, and I mustered up the energy to get myself out of my car and up to Jo's door before I had another high-speed come-apart and burst into flames in her driveway.
I got all the way to the door before my eyes started to tear up. By the time Jo opened the door, I had tears streaming down my face. She, I'm sure, could tell before I said the words, but I said them anyway, "it's back." She started to cry as she hugged me and asked if I wanted to come in and sit down. I made my way to the yellow rocker, and as I sat down, she handed me her sleeping baby. I held onto Sally for dear life while I went through the details of what I had learned at the doctor. I gestured to where, exactly, the tumor was in my back. I did a diagram of how big it was when the scan had been done two weeks earlier. I told her that I didn't know what to do. I was angry that it was back. I was scared out of my mind. I'd used all 12 weeks of my FLMA leave the year before and wouldn't qualify for a medical leave from work again until June. I didn't know if if I still l had a job. Any savings I'd ever had were gone after having to live off 60% of my income while I was out on disability from June-October the year before. I knew I'd have to have surgery again, and possibly chemo, and the truly stinkiest thing was that I'd had this surgery before and I knew how brutal it was. I was lost, and scared and ... I had this weird feeling that my boyfriend was about to break up with me.
We sat and we talked. Dean came out of the office because he heard us talking. Jo looked up at him and said "It's back." (How in the world two words can carry so much weight is beyond me.) And we cried.
Within a matter of half an hour of leaving the doctor's office, I went from feeling like I was facing this alone to knowing that I had the support of my parents, my best friend and her family, my siblings, my cousins and a few of my closest friends who were on a texting tree.
Kirk called at about 5:00. He'd heard the news and wanted to know how I was handling everything. He and Mary had been planning on going to dinner, but when they got the news, Mary suggested that he take me out that night instead. (How much do I love my sisters-in-law? So. Much!)
Kirk took me to Cracker Barrel for dinner. I ordered french toast and bacon (two of my favorite foods in the whole wide world) and we talked and we cried. I gave him the same breakdown I'd given Jo. He and I worked for the same company at the time, and he was confident that they'd do the right thing and grant me a leave, even though I didn't technically qualify for one until June. (Bless Kirk for always seeing the best in people. And bless the company - because they sure did step up. They gave me a medical leave that they didn't have to give me and I was able to have my surgery without losing my job or my benefits. I will love them forever for that!) I talked to Kirk about Clint. I told him that I was really confused by the recent distance, that I didn't know what was going on or what to do. Kirk's advice was just to let it sit, that his guess was that Clint was trying to wrap his head around something he hadn't thought would be an issue, but that he'd come around and all of that weirdness would resolve itself.
When I got home from dinner with my brother, all I could do was sit on my couch and cry. I had felt that it was coming back. I wasn't taken by surprise, per se. I had known in my gut that it was coming - but it was still incredibly hard to process.
I got a text from Clint that he, too, was having a rough time. He asked for some time and space to think some things through. He told me that he'd know in a couple days what he needed to do.
This was the day that I found out that my cancer was back, and the man I loved was asking for time away from me to process on his end.
What the HELL?!
I grabbed the soft and fuzzy blanket that Christian had given me at our lunch earlier that day, crawled into my bed and cried myself to sleep for the second night in a row - only, this time, I had a concrete and certain reason for the tears.
-That blanket was literally a security blanket for my 36 yr old toddler self. I slept with it that night and every night thereafter until late Summer. (I'm not kidding. When I went in for surgery in March, it went with me to the hospital. It traveled from my bed to the couch to the recliner and back to bed with me through endless nights of heartache and pain as I went about the business of recovering from back-to-back surgeries until July, when I went to Utah and finally cut the cord, because it wouldn't fit in my carry-on. True story.) -
February 12, 2011
I woke up, clutching my blanket. Eyes burning, I got out of bed and got dressed and went into work. I didn't generally work Saturdays at the time, but when I'd found out that my cancer was back, I suddenly started regretting having taken a PTO day on Thursday. I called my boss and asked if there was any way that I could work Saturday to comp out my hours for missing Thursday. That wasn't something that we would generally have an option on, but given the circumstances, she made an exception.
I worked a 10 hour day on the phones in a call center that day. It was brutal, but having to talk to members who were going through their own crisis or needing answers to their questions helped me keep my mind off myself.
That afternoon, I took a call from a member who lived in New York who'd called in to report an issue with one of her creditors, and she just randomly started talking about her own health struggles. She'd fought breast cancer for years, had finally been in remission and felt like she could go on with her life in 2010, but at her last doctor appointment had been told that it was back. She just talked and talked and talked. And I let her. She talked about fear, anger and disappointment. She talked about faith, and believing that things happened for a reason, and her need to trust in the Lord. She talked for almost two hours, and I let her. She cried, and I cried. She apologized for taking so much of my time, and told me that she didn't know what had come over her that she would tell a perfect stranger these things. She told me that she was so sorry, and hoped that she hadn't been a burden. I assured her that she hadn't been a burden, that it had been a pleasure to be there for her, that I was happy to be able to listen to her and give her an outlet. I explained that I, too, believe in a greater power and I told her that I didn't feel that it was a coincidence that, in a call center with hundreds of employees answering phones, her call had come to me. I told her that I didn't usually work on Saturdays, that it was an exception to policy that I was even there. I told her that I, too, was a cancer survivor and that I had been told the day before that it was back. She sobbed. We talked about the miraculous way that the Lord puts both obstacles and people in our paths, that if we pay attention to the people, they will help us overcome the obstacles.
That morning, I had been feeling sorry for myself that I had to go in to work, because I knew that it was going to be hard. (Saturdays in a call center are the equivalent, I am sure, to Saturdays spent tending the fire in the pit of Hell. The phones are merciless. They just ring and ring and ring and you're lucky if you can go 30 seconds between calls, no exaggeration.) I hadn't wanted to go in, but I knew I would need all my PTO days later. Besides, I am a firm believer in the karmic payoff that comes from working every day that I can. That one phone call (that lasted more than half of my afternoon shift) changed the day for me. It changed my perspective. It helped me realize that if we look for ways to help other people and are open to seeing the hand of the Lord in our lives, we absolutely will see it.
I left work at 5:00 to head over to my brother's. I had dinner plans with my friend Charla and then I was going over to Spencer and Brea's. As I was driving over to the west side of town, I got a call from my cousin Julie. We talked and laughed at I drove. When I filled her in on the latest with Clint, she said "Now you have to write a book! They'll surely make a movie out of it, and the voiceover at the beginning of the movie will be you, saying "Today, I found out that I have cancer. Again. And now my boyfriend wants to break up with me." - Who wouldn't want to watch a movie with that as the leading line?" We laughed, maniacally. Because when it's a laugh or cry situation, we Ball girls like to err on the side of laughter.
Dinner with Charla was lovely. We went to Mimi's Cafe and I got a buttermilk muffin and an unlimited supply of restaurant butter. (Seriously, heaven!) We chatted for an hour or so, then I headed over to the brother's, where Brea talked me into having a sleepover.
I'd heard from Clint once that day. He'd texted to check in that night when I was with Charla. I told him that it had been both a hard and good day, but I was with someone, so I couldn't talk. He told me that his day had been much the same and told me he'd check in with me the next day. As I was falling asleep, I thought about how much my usually boring life had morphed in the last week and wondered what kind of drama the next day would bring.
February 13, 2011
Spencer and Brea had morning church and I had afternoon church, so I got up the next morning and headed home. Much of my day was typical. I went to church, sat in the back, did my own thing. After Sacrament Meeting, I was making my way out of the chapel when one of the single sisters in the ward stopped me to tell me how good I was looking. I thanked her, but we were in close quarters and I couldn't get away quickly enough to let that be the end of the exchange. She pressed, "No, really, you're looking fantastic! You've lost a lot of weight this year. How did you do it?" - "Cancer", I said, "and I just found out on Friday that it's back... so it'll be interesting to see what I look like by the summer!" She was, as you can imagine, shell-shocked. Poor thing, just trying to pay me a compliment, and here I am, lambasting her with the C word. (Sometimes I worry that my need to laugh at the cancer freaks some people right out. Oh, well.)
After church, I had a text from Clint. He was doing better, still working on processing some things, but thought he had come to a general consensus for what he needed to do.
- As a bit of a back story, and to put some context into what he had going on in his life, the man was a divorced dad who had shared custody. He lived here in the Phoenix area, while his kids lived with their mom up in the White Mountain area, which is about a 3 hour drive. He'd been unemployed for a while and was working towards opening his own business, but had struggled in getting things off the ground. He'd been able to move in with his parents to save money, which helped with getting the seed money he needed for his business, and it also allowed him to have more money to help with his kids. He was in a bit of a bind, financially, which was one of the reasons we weren't busting forward full-speed ahead. I loved him, and I wanted to be with him, but I also needed the security of knowing where and how we would live. He was working on figuring some stuff out, work-wise, and I had understood that and was willing to put in the time while he got himself where he wanted to be. I understand that starting a business can be expensive and time-intensive, but I believe that if that business can give you the lifestyle that you want with the paycheck that you need, it's totally worth it. So, between his work situation and the fact that the kids he loved were a good 3 hours away from him, the man had some stressors he was needing to find solutions for. -
I texted him back, telling him that I was glad that he'd been able to find some peace and decide on a direction he should go in, and asked if we could talk/talk, instead of text. His answer was no, because he had the boys with him. He explained that he'd been wrestling with where he should be, geographically. He felt like he was missing too much of the boys' lives and had been trying to think of a way that he could do his business from the White Mountain area, rather than in the Phoenix area. The long and short of it was that he'd decided that he should move, that he needed to put his children as his priority, believeing that if he put his family first, things would work out professionaly and financially. He told me that he'd been struggling emotionally and had realized that he felt most loved when he was with his children, and he needed more of that. He told me that he genuinely cared for me and didn't want to hurt me, but that he wasn't in a position to give me what I needed and he needed to take care of his family.
Again, I asked if we couldn't please talk about this. (I mean, I got that he needed to be closer to his kids. I wouldn't try to keep him from them. And if he really wanted to break up with me, there was nothing I could do, but I felt that a voice to voice converstation is better than phone to phone. I wanted him to hear my voice. I needed to hear his.) He told me that he really couldn't talk, because he had no privacy. He said he was sorry, but he just couldn't give me what I wanted and felt like this was what he needed to do.
He broke up with me. Via text. Two days after I found out that I had cancer. The day before Valentine's Day.
Now, I don't say this to be bitter. I am not bitter. (In fact, the timing and the way it all came down is really kind of humorous, in a dark and twisty sort of way. ... You know, a year after the fact, and as long as I'm the one cracking jokes about it.)
Was I heartbroken? Yes, I sure was. (I was so glad that he sent that last text as I was on my way to Jo's for Sunday dinner. Insert about 4 hours of solid baby-holding here. Once again, Sally saved me.) Was I angry? Yes. Was I hurt and confused and scared out of my mind about having to do the cancer without the man who'd promised me that I'd never have to do anything by myself again? Yes. Was it incredibly confusing to go from one end of the emotional lovey-dovey spectrum to the other in the space of one week? Yes. But guess what, folks - I survived. In fact, I'm going to go as far as to say that I flourished.
Now, I didn't flourish over night. There were days and weeks, and maybe even a few months that there was a hole in my life and my heart ached for the loss of what I'd had and would could have been. But over time, I realized that, while the timing of that breakup sucked, the timing was also exactly what I'd needed it to be. Had we broken up two or three weeks before then, I wouldn't have had that clarifying weekend when I had to really make a decision about what I wanted and commit myself to working and fighting for it it. Had we broken up two or three weeks later (or, heaven forbid, months later), I would have had him to lean on for part of Cancer, Round Two, but not all of it. I shudder to think how hard it would have been to come back from a breakup at the same time that I was facing the special kind of hell that is recovering from surgery.
I've been thinking a lot this week about what was happening in my life at this time last year, and at this time last month. There are some very obvious similairities:
I found out that I have cancer. Again. I am single. Again. (Okay, still.) I am unsure of where I will be in six months, on a lot of levels. Again.
There are also some stark differences:
I know that I will be okay, because I already have been. Twice. I know that the relationships in my life are what will get me through this, because the people who know me the best and love me the most have already proven to me that they're here for me, whenever and however I may need them. I know that wherever I am in six months will be exactly where I'm supposed to be, because that's what keeps happening in my life (both literally and figuratively), over and over again.
There are similarities and there are differences. I could list them for you all day long (you know I could - I heart lists), but at the end of the day, what I've learned is that I get to choose how I react to things. I may not often (in fact, some times it seems like I never) get to choose what actually happens in my life. My life is impacted by decisions other people make; it is impacted by friends and family members whose lives intersect with mine, by church and work and all manner of other stressors in my life. My state of health certainly impacts my life. There is a lot of happenstance that I simply can't control. There is a lot in life that just "is", but what I've learned is that I do get to choose how I react to what happens around - and inside of - me.
A year and another tumor later, I am more aware of the power of choice. Agency is the most important thing in my life. I'm grateful for the ability that I have to excercise choice every day, and for the peace that comes from making the choice to be happy and to find joy, especially when circumstances might dictate another emotion would be more fitting.
Thursday, February 16, 2012
Jo had texted me a couple days ago, asking if I had anything going on this morning. Once I responded that I didn't have a lot going on, she asked if she could come over and hang out for a few hours. I told her that would be great, and she said she'd be here between 9:00 and 10:00.
This morning, I had a knock on my door at 8:30. "She's early", I thought. Imagine my surprise when I opened the door to see my cousin Amy and aunt Cindy. They drove from Cedar City to spend the day with me. That's right, they drove 8 hours - last night - to spend just over 8 hours with me today, before they drove back home tonight.
We sat and talked for hours before we took a Cracker Barrel nutrition break. (We all know how I feel about bacon. And Cracker Barrel has the best french toast. Sourdough bread and real maple syrup. Need I say more?) After breakfast/lunch (that's called "brunch", yes?) we came back to my house and Amy and I did a blind taste test of:
I'm pleased to report that it was a unanimous vote and Thin Mints won, hands down. (Which is nice to know, considering I spend easily twice as much on a package of Girl Scout cookies as I do the Keebler goods. They're worth every penny of the $4 a box, folks.)
Amy brought me a present:
This is a box of Certs from our grammy's desk. I laughed, and then I cried that she would bring me such a prize!
Syd and Amy went on a quick run to Costco this afternoon while I took a walk and then had a little lie-down for a while. (I tire easily. It's because I am old - and my body is a little bit broken.) They came back with this little goodie for me.
I cried, because that's what I do when I'm blown away by how nice people are to me. Amy's reason for the purchase was that she has a lot of movies she's going to need to loan me (I do love that we have family predilection for hours - if not days - of movie watching, esp when we're sick and can't go anywhere or do anything else), and a lot of the movies she's gonna send are blu-ray, so I needed a machine that I could watch them on.
The most amazing thing to me is that, just this week, I was talking to my mom about how I'd been thinking I needed to put the word out that I was needing a broken Wii or Xbox. Broken, because I don't want/need to play games. I just needed the functionality of streaming. (You know, for the Netflix.) ... Enter this blu-ray player that will meet that need. This was literally an answer to a prayer. As small a thing as it may seem, I'd been thinking about and wondering how I was going to make streaming internet to my TV a reality, and now I can. (As I type, Lie to Me is playing in the background. ... I heart Cal Lightman.) In a world where things don't always go the way that I want them to, I never cease to be amazed (and grateful) for the times that things do go my way. Is Rockford Files streaming really necessary to my happiness? No, but it sure helps my busy brain to have something that gets me out of my own head.
After Amy got my new electronic equipment hooked up and functional (thank goodness she was here, no way could I have put that together on my own!), we headed to the park and met Spencer and Kirk and their families for a little play time. At 6:30, the Utah girls headed out of town and I headed home for an early evening. (Don't judge. It was a full day. I had way more going on that I usually do on a Saturday.)
I'm so grateful to have been able to spend the entire day with my aunt and my cousin. We talked and we laughed. I learned new things about my family, and I remembered some of my favorite stories about them, too.
I'm so grateful for the relationships in my life. I'm so grateful for family who'd drive all night to spend the day with me, and then turn around and drive all night to go back home. I love them!
I am grateful that I didn't burst into tears even one time at work today. (Over dinner, yes, but not at work.)
I'm grateful that I work in an office full of people who care about me (and vice versa). I've been so fortunate to work with such an incredible mix of people, and I'm so grateful for the individual ways they each touch my life.
I'm grateful for the smell of petunias in winter. (Which is a little weird, considering how the smell of petunias in the summer marked my childhood, but such is the way of living in the Valley of the Sun.) Petunias make me happy.
I'm grateful for surprise boxes of Girl Scout cookies. Truly, there is nothing better in the way of a "I'm so sorry that you're having a hard time - I hope this will help you have a better day" gift than a box of Thin Mints. I can't tell you how much it made my day to walk into work and find this on my desk! (I have mixed feelings on my need to report my newfound knowledge that it takes me 12 minutes to eat one row of cookies. On the one hand, I'm sort of proud. On the other, I know this is not something that people in polite society discuss.)
I'm so grateful for my cousins. Last night, I chatted online with Lindsay, and then read an email from Shelly and an email from Robin, both of which made me cry (in a good way) and helped me remember why I love my family so much. This afternoon, I got to talk to Julie for almost an hour. I'm so grateful for my cousins, because they are friends that I've had my whole life. Today, Julie told me that it makes her happy that I know her as well as I do. ... I know exactly how she feels, because I feel the same way.
I'm grateful for good friends. Tonight was my semi-monthly (semi, as in, we try to do it monthly, but sometimes we get too busy and it goes every-other-monthly) dinner with Ashley. She is my favorite Peterson, and my favorite person to split the Red Robin cobb salad with, hands down. Tonight, we made tentative plans to do a Monday night movie next week, because Ashley wants me to meet the new man in her life. She told me that she told her boyfriend that she wants him to meet her "happy friend". (This is how she's described me to him. Next to being called funny, being called happy is the best thing in the world to me, esp by someone who knows me well enough to know what is going on with my health. She knows what is hard for me, but she still sees me as happy. This is such a huge compliment to me.)
I'm grateful for Arizona sunsets.
I'm grateful all the time for the corner of the world that I live in, but this time of year, it truly blows my mind. I love the spring color, and the combined smells of jasmine and petunias and ripe citrus in the air.
I'm so grateful that I live in this beautiful part of the country. I'm so grateful that I work with people who make me happy and bring me joy. I'm so grateful for people who are related to me who are also my friends. I'm so grateful for my awesome friends who aren't family, but feel like they are. I'm grateful for conversation that runs the gamut, for so very many people in my life whom I love and I know love me.
Truly, life is good. I am grateful.
I love days that are full of joy and good things. (Like, you know, Girl Scout cookies and Red Robin's fries.) I'm glad that today was one of the good days.
To give credit where credit's due - I'll give that today was a doozy because yesterday was a doozy. The information I got at the doctor's office yesterday threw me for a serious loop and I didn't get much sleep last night.
(Lack of sleep + lack of Ativan = a very dark and stormy day in the life of me.)
Here is the story.
I was having a fairly decent, pretty predictable morning at work when I went into the bathroom to go about my business and had promptly had a high-speed come-apart. I was washing my hands, when I looked up at myself in the mirror and a sob ripped out me. - It was a combination of seeing how tired I look and the sudden awareness that even when I go about the normal, mundane tasks in my life, I am not in charge. - I was staring myself in the eye when I doubled over in a crying fit. I had to grab the sink for support, and my first thought was "Where did that come from?!", followed closely by, "Holy COW, am I glad that this happened while I was alone in the bathroom!" I cried huge, ripping, gulping sobs for about two minutes and then told myself that I had to get a grip. I knew I just needed to make it back to my desk and pop an Ativan, and in half an hour or so I should dry up and be back to normal.
Only... I didn't have my purse at work today. Which meant, I didn't have the Ativan.
As soon as I got to my cube and remembered that I'd left my purse at home, the sobbing started again.
I mean, full blown, could not be contained, hiccuping sobs. At work.
Christian asked me through the cube wall if I was okay. (I love her. I was clearly NOT okay, but she knows me well enough to know that I'm an emotional creature and just because I'm crying doesn't mean that anything is actually wrong.) Only, today, there was something wrong. There were a lot of things wrong. So, I went around the wall to her desk and for the second time in a few weeks, knelt down inside her cube and poured my broken heart out about the things that scare me and overwhelm me. I told her that I didn't know what to do, because on top of the list of Stuff That Makes Me Cry, I couldn't stop crying on my own and I didn't have drugs with me to calm me down. She listened, and she told me that she'd fix what she could. And then she did.
Christian moved the entire contents of her desk to the front of the office, to the space that I'd been asked to occupy, because that was one of the things on my list of Stuff That Makes Me Cry this morning. She talked to our boss, who was out of the office in meetings, and explained that she was moving instead of me, and assured me that not only did she not mind, but that she wanted the window seat up there. Bless her sweet soul, forever and ever. Amen.
Of course, I still cried off and on for the majority of the day. Sometimes hysterically, and sometimes quietly. I got emails and stop-by-the-cube visits all day long from the women who wanted to check in and ask if there was anything they could do. (One of the girls is a fellow fan of Ativan and completely understood the existential meltdown I was having without the help of prescription drugs. I will love her forever for not only being a kindred spirit who's sometimes in need of anti-anxiety medication, but for being honest about that and obviously empathizing with how I was dealing with the lack of drugs today.)
Until today, there were a handful of people in the office who knew about the cancer. After today, it's no secret. (Also, any misconceptions about how I am able to hold it all together have been completely thrown out the window.) Now we all know that a) I have the cancer and b) I need medication to not cry. (By which I mean: sob. Uncontrollably.)
Never again will I leave the house without that little bottle of prescribed calming nectar. Never. Ever. Again.
Wednesday, February 15, 2012
That is to say, this morning, I had my first appointment at MD Anderson and met my new doctor.
(Okay, okay. I'm kidding. About the husband thing. Mostly. ... Not about the doctor thing. Even one little bit.)
Jo, of course, came with me. (Not that she thinks she's protecting me from the cancer anymore. She's had a rude awakening there, to say the least, but she is a firm believer in being there to support me in whatever the doctors have to say to me, so... she comes with.) Since it was the first time I'd been to the cancer center, I was asked to arrive an hour before my appointment. I was given a tour of the facility. I got to meet with my financial advisor and a slew of other support staff who've been assigned to be my best friends and helpers as I go through this process.
I'm not going to lie, I'm sort of in love with this place. They assign handlers to each patient, specialists to handle any emotional, financial and/or health questions I might have. It's awesome!
After checking in and having a confidential meeting with my financial counselor (like Jo couldn't have been there... please, she knows exactly how broke I am and what my situation is, but how nice are they to keep my financial stuff confidential?), we were escorted to the exam room, where there was a steady stream of women in and out of the room, giving me information and asking me questions, creating a file with The Story of My Life. As each new person would come in, they'd look from Jo to me, unsure which of us was the patient and which was the emotional support. It got to the point that I'd raise my right arm as soon as someone came in, so they could see the pretty bracelet they'd put on me when I was admitted and know right away who was who.
Here's how it would go:
Staff: Walking in, looking from side to side, not sure which one of us was the patient, "Laurie Evans?"
Me: Raising right arm and waving wristband about, "Here"
Staff: "And what's your date of birth?"
Me: stating date of birth
Staff: "Okay, it's so nice to meet you. My name is Blah Blah Blah... Let's get started."
Over and over again. (But not in an annoying or unpleasant way.)
Enter my new (and most definitely NOT wearing a wedding ring) oncologist. He came in and I waved my wristband about, so he'd know who to talk to, and we got down to brass tacks.
He advised that he'd reviewed my medical history and explained that, while liposarcoma is more likely than most sarcoma to respond well to chemo, he feels that having another surgery is the better way to go at this point. He said "I could give you chemo for months, maybe even for years, if that's what you want to do... but at this point, the only guaranteed cure is to cut the tumor out of you."
So not what I was expecting. At all. ... But the good news is, I've become accustomed to whiplash in regards to my medical life, so I recovered quickly.
We talked about why surgery instead of chemo. Again, chemo isn't a guaranteed cure for someone with my special blend of cancer. (Awesome.) Surgery is, in that it gets the tumor the heck out of me.
He's not worried about the cancer going directly to my lungs. (My current oncologist has had some concerns there, and it seems that was one of the major reasons he'd suggested chemo in the first place.) New doctor explained that he'll continue to watch my lungs, to make sure there isn't anything happening there that shouldn't be, but that he isn't particularly concerned about lung cancer as a secondary condition, because liposarcoma isn't as likely to hit the lungs as leiomyosarcoma is. (Sound familiar? Yes, yes it does. My first thought was "Cousin Greg will approve that my new doc is giving me the same info that he gave me.")
He asked why my first two surgeries had been performed by a general surgeon instead of an oncological surgeon. ... Easy answer - I hadn't ever heard of an oncological surgeon, prior to his bringing this up, and it never been suggested. I explained that my first tumor was found when I was almost at the point of exploding from growing a watermelon in my body, and that when I was scheduled for surgery, we didn't know if it was a teratoma or a liposarcoma. (The pathology reports told us what had been taken out of me 48 hours after the fact.) There simply hadn't been time between finding the first tumor and getting it out of me to escalate anything, or to get a second opinion. I explained that when the second tumor showed up, it was assumed that I'd have the same surgeon as I had the first time. For whatever reason, none of my doctors ever thought of escalating me up the oncological chain to get a specialist surgeon, and I sure never even thought about the possibility.
He explained that an oncological surgeon would be much more aggressive than a general surgeon, that I will most likely lose my left kidney this time, along with any other affected tissue and other non-essential tissue or organs that I can afford to lose without impacting my ability to function.
Holeeeee crap. Surgery. Again. And he wasn't kidding when he said it would be more aggressive.
Now, he didn't tell me that I have to have surgery. As I reported way back at the beginning of this story, he offered to give me chemo if that's what I wanted. (I would like to interject here and state officially and for the record that I don't want surgery or chemo. What I want to do is pass on both options, and just get rid of the cancer. ... Too bad I don't always get what I want.) When he first suggested surgery over chemo as a treatment option, I told him that I'd do whatever he told me to do. He smiled, sadly, as he told me that he can't tell me what to do. He explained that, as the patient, what treatment plan I choose is up to me. He did say, however, that if it were him, he would opt for one more surgery, this time with an oncological surgeon. I expressed concern that these surgeries are hard to recover from, and my fear is that I'll have another surgery and then it will just come back - again. He acknowledged that that is a possibility, but that with a more aggressive surgery, they just might be able to get to the source. And, he said, if it did come back after I'd had an oncological surgeon operate, I would have the peace of mind that comes of knowing that I had done all that I could do before I escalated treatment to chemo.
Okay. That made sense, because I happen to be a big believer in doing all that I can do. (Also, I'd really rather not lose my hair and/or be pukey sick and miserable for months or years on end.)
So, surgery. Only more aggressive than it has been in the past. (Imagine me, shuddering at the thought of how hard it will be to recover from something more aggressive. The last two surgeries were brutal, and this will be more of the same, but probably harder to go through and I will most likely take longer to heal. Wow.)
I was a little shell-shocked (I have to think that this reaction is normal for someone in my position). It took me a few minutes to process. The man just sat across the room from me, stoically waiting for me to decide what I wanted to do.
Surgery, I told him. I want (no, I need) the peace of mind that comes of knowing that I have done all I can do. He asked if I had time this morning to talk to the surgeon. (Wait? ... What? ... I could meet with both doctors on the same day, under the same co-pay?!) Heck yes, I had time to meet with the surgeon! He asked us to excuse him for just a moment while he went to check with the surgeon and see if he could come in and visit with me.
While he was gone, Jo and I talked for a few minutes about this new plan. By the time he came back into the office, we were past the horror of finding out I'd need to do surgery again and back to our usual joking and laughing. He came in, sat back down on his little doctor stool and explained that he'd talked to the surgeon and that he'd come in and talk to me in a few minutes. We chatted for a few minutes while the surgeon did whatever it was he was doing.
- I may or may not have (read: definitely did) sort of ask him to marry me. ... I'll tell you more about that part of the story in a future post (mostly because this one is already just waaaay too long). He did laugh out loud at my proposal, but he didn't say no. (I live in hope that I'll be able to wear him down.) -
After about five minutes of raucous laughter (most of which was brought about by my telling this man that I have a deal with the Lord that it's okay if I keep growing tumors as long as He'll deliver an oncologist who will cure my cancer and then marry me and pay all my medical bills), the oncologist excused himself and the surgeon waltzed in to take his place.
As the surgeon came in, I repeated my right arm wrist shake so he'd know I was the patient. He just laughed and said "Oh, I know which one of you is the patient. You're already pretty famous around here." (It turns out that he and the oncologist are BFF's and he knew the story about how I'd asked/told the man to marry me. ... I told him that if he wasn't wearing a wedding ring, I'd give him the same deal. He just laughed. Like I was kidding.)
The surgeon ran through most of the same information that the oncologist had already given me. It will be another open surgery, laparoscopy isn't an option here. It will be more aggressive. I'll almost definitely lose my left kidney, because it's close to the origination site, my first tumor had adhered to it, and it's a non-essential organ. He'll take as much of the retroperitoneal tissue as he can.
We talked about the timeline for surgery. Which is to say, we talked about how there isn't a timeline for surgery.
Right now, the plan is to watch and wait. With my tumor being as small as it currently is (it measured at approx 2 centimeters at my MRI in January), the risk of surgery outweighs the risk of waiting. So, I'm going to grow a tumor. (Great plan, right? I feel a little bit like a pod, knowing that I'm hosting a malignant growth, but whatever.) They'll do another MRI and chest CT in the next few weeks to get a baseline, and they'll do follow-up scans every 90 days to monitor the growth of the tumor. When it gets to be the right size, they'll take it. (PS - There is no "right size", as in x number of centimeters in length or whatnot. They'll be looking for a combination of factors: margin, other affected tissue, change in my overall health, etc. When they see what it is they're looking for, they'll schedule surgery. I was told that could be in three months, it could be in a year.) It's a little bit frustrating to know that I'll have surgery, but not know when I'll have surgery. The control freak and planner in me just wants to get this over with, or at least on the calendar, but I'm working on letting go of the need to plan and learning to trust that it will all work out. The truth of the matter is, I'm in a bit of a sticky situation with work - having started a new job in the fall, I need to be there for a year before I can qualify to take a medical leave of absence - so waiting may end up being the best case scenario for me as far as that goes.
At the end of the day, this appears to be yet another lesson in how I am not in charge. As much as I might want to be in charge and as much as I do my best to assert myself and make the best of the situation (remember how I asked my doctor if he would marry me?), I am not the boss here and I have to trust that Someone Else (as in G-o-d) is. I have to trust that there is a greater plan, that these new doctors know what they're doing (they did, after all, go to school just to learn how to work with "hard to treat, hard to cure" cases just like mine), and that this will, somehow, turn out okay.
So, to sum today up... I, once again, learned that The Plan can change on a dime. I, once again, was reminded that I am not in charge. My hair is, once again, calling the shots in my life and is refusing to say die. (I feel a little bit like "the girl who cried chemo" about how dramatic it has been to think I was headed down that road. But listen, as horrifying as it was to think I was gonna have to go there, I was preparing myself for a treatment I'd been told I'd need.) Even as I try to wrap my head around this change in treatment plans, I am grateful that I won't have to go the chemo route just yet and I am hopeful that this one last surgery will be just that - one last surgery.
I have to trust the Lord and I have to trust my doctors, because without trust all I would have is fear and uncertainty. Given the options, I will choose faith and trust, every time.
Sure, I've been given a little bit of information. (Just enough to be dangerous, probably.) I take comfort in the thought that I should get to keep my eyelashes, but I'm horrified that I'll lose my hair.
It's my best quality. Or, attribute, actually. (I don't know that one could call hair a "quality". It doesn't actually contribute much, in the way of a quality, now that I think about it.) But it is how people recognize me, and the fact that I will lose it - and relatively soon - is killing me.
Kathy U. has told me for about 10 years now that I have "book cover hair". You know, like a heroine in a book. In the full color picture on the dust cover, book girls almost always have long, flowing locks that are just a little bit curly. To a high school age Kathy U., that was me. It won't be me anymore. At least for a while.
Whitney Dibble once chased Liz Roberts and I around the neighborhood, trying to catch up to us so she could give us some homemade banana bread. (And let me tell you, when she finally caught us, I was glad that she did!) Lizzie and I had been doing our visiting teaching (read: it was the end of the month and we were out cruising the ward, handing out cookies to our friends in lieu of a lesson) and Whitney passed the car. When she pulled up beside Lizzie's car, she told us that she hadn't been able to see who was driving, but she could see the hair in the passenger seat, and she knew that whoever was driving that car was with me. ... I sure hope my wig will be as obtrusive and easy to spot as my own actual hair is.
About 18 months ago, my high school English teacher died. I, of course, went home for the weekend. After the service, I turned around to see Christy Burgess behind me in the chapel. I gasped in surprise and delight. We'd been in Miss Cunningham's class together, and I was so happy to see a friend whom I hadn't seen in over 15 years. Christy made me laugh when she told me that she had seen me from the back of the chapel when the congregation stood to allow for the family to exit the building. I was sitting in the second row from the front. She said that she couldn't miss me, between my height and my hair, neither of which had changed.
It will be years before I'll have book cover hair again. It breaks my heart a little to know that, in a matter of a few months, no one will recognize my hair and know that it's me driving or standing ahead of them. I don't know when I'll ever have someone run their fingers through my hair again. That's one of my favorite sensations, it's so comforting and is so intimate. I won't have that feeling for... well, I don't even know how long.
I hate the thought of losing my hair. I hate it. At the same time, I don't really have an option. I've been told that chemo will give me the best chance of beating this stupid disease, and I am intent on beating the hell out of it.
It causes me actual, visceral pain to think about not having my own hair on my head. It is how people recognize me. It is what I am constantly complimented on or teased about. My hair has a mind of its own and I've had a love/hate relationship with it for over 30 years. I am heartbroken that I will lose it. I am determined to make the best of this situation and I will not let this get me too down in the dumps. (Quick! I need to find another feature that I can be known for. My smile, maybe? My ski-jump of a nose? I don't know.)
The one and only upside I can think of is that I will finally be obviously sick. No longer will people in a restaurant watch me have to push/pull my tired and decrepit body out of a booth and wonder what is wrong with me. My neighbors won't stare and wonder why it takes me so long to walk to my car, or why I stagger sometimes under the weight of a double load of laundry. I will finally have an obvious reason for moving like an 87 year old instead of a 37 year old. ... Maybe if I focus on the obvious upside and an almost guaranteed outpouring of public sympathy and start practicing a winning smile, I'll be able to get through this alright. I'll see what I can do...
Like I said, I'll get through this. With a smile on my face, even. I'm determined. I have to. ... But tonight, on the eve of meeting a new doctor and getting a more final treatment plan, I am mourning the loss of my hair.
I can get by on five hours of sleep, but... I'm a little more prone to be emotional when I haven't had 7-8 hours. (Also, in case you missed the memo, I have the cancer. This also makes me a little more emotional than I am otherwise.)
I didn't get much sleep Friday night. I didn't get a nap in yesterday. I woke up early for a 7:30 meeting this morning before church. The lack of sleep combined with the presence of this darn tumor is wearing me out, and when I am worn out I am more apt than usual to break into tears or be super tense and have a hard time breathing. Thank heaven for Ativan.
I made my 7:30 meeting this morning and was fine until about 10:00, which is when the inability to breathe set in. I left church during Sunday School to come home and have a snack and take a pill. I took a walk around the block to get some fresh air and calm down, then went back across the street for Relief Society. It's my month to conduct, so I sort of had to be there.
When I got to RS, I was fine. I'd had enough time for the Ativan to kick in. I wasn't irrational or over-emotional. All things considered, I thought I was holding everything together pretty well. I got up in front of the women to conduct the meeting, and as I turned the time over for the music and opening prayer, I moved away from the podium and walked right into the corner of the table to the left of me. I mean, I nailed the corner of that table with my right leg. As in, I hit it hard enough that it moved a good 6 inches. (This is a heavy table, my friends. It's a good 6 feet long and it's real wood.) There was a collective gasp from the group of women in the room. I just laughed and told them I was fine. (Thinking, "Little do they know that I walk into walls and furniture on a daily basis.")
After the meeting, one of the sweet sisters caught me and asked if I was okay. I told her I was fine. She cocked her head, told me that she'd read my blog and knew what was going on and asked if I was on any medication. (The answer, obviously, was "yes", I had taken some anti-anxiety medication so I could, you know, breathe and perform my Sunday tasks, but since I am not on any medication for the actual cancer, I told her no.) I asked why she'd ask me if I was on medication. She gave me a concerned look and told me that when I'd walked into the table, it had made her wonder if I was having a reaction to medication. I just laughed out loud.
Uh... No. Me walking into the table had nothing to do with medication. It had everything to do with poor coordination and a serious lack of depth perception when it comes to the nearness of sharp or heavy objects. Literally once a week, I wake up with a bruise in a weird place and then have to retrace my footsteps from the day before so I can figure out if I hurt myself walking into a wall, a file cabinet, the side of the fridge, etc.
Good heavens, I only wish that it was having taken a pill that made me clumsy! But, alas, it was not. I was born the girl who is doomed to spill food on her shirt and then walk right into the wall. This is my life, tired or not, encumbered by the emotional side-effects of possibly life-threatening illness or not, I am the girl who will spend her whole life walking into sharp corners and doorknobs. Lucky for me, I am resilient. On a lot of levels.
Sunday, February 12, 2012
I put the dishes that have been on my counter for three weeks back in my pantry.
That's right. I put them away.
Did I actually get the pantry organized? Heck no! But it's better than it has been, and the stack of Pyrex that's been on my kitchen counter has been re-stacked on the floor of the pantry, and that's good enough for me.
Other things I did today:
I went on a walk.
I bought four balloons for a 4 year old's birthday.
I went through my closet and pulled out three stacks of clothes for Goodwill.
I took Ativan - twice. (It was a crying day. Not in a bad way, but I just couldn't stop.)
I read half of the book that Seth loaned me. (I'm not sure if it's the Ativan or the, you know... cancer, that makes it hard for me to remember what I read, but this is why I'm not reading as much these days as I usually do.)
It was a good day. I got five things done, and I was able to go to Jo's for Maggie's birthday dinner. (We ate rolls. That's it. Rolls. Because that's what Maggie wanted for her birthday dinner. Rolls and pink cupcakes.) Now, of course, I am exhausted. (It's all of 8:00 PM.) But today was a great day. Even my kitchen counters are happy.