Posts Tagged: fear

Cancer / every day life — 1 Comment
9
Jul 10

Farewell, this week. Don’t let the door hit you on the way out.

Every single day of this week has felt like Friday. Not in a good, TGIF way, but more in a is-this-week-still-dragging-on?-kind of way. Like, every single day I’ve thought, “it can’t possibly still be NOT-Friday!”. This week has kicked me in the ass. Repeatedly. And it sucks.

I know, I know. I received good news–great news!–today. News that my scan was “normal.” Oh, good. Yes. I am relieved. Another reprieve, it seems. Another 6 months before I worry myself sick again. But it still doesn’t erase it all.

It doesn’t erase the deaths. This week, already mindful of Kenny’s death in such an immediate way, especially as I wrote a memorial piece about him, I was completely devastated by the news about Anna’s dearly beloved teacher, whose baby–not even 6 months old–died. This beautiful, charming, totally healthy and perfect baby, whose dimpled smile shone from her elfish face, whose body I held many times upon picking up or dropping off Anna (because I just cannot stand to NOT hold a baby, goodness knows). Gone. Just gone. SIDS. I cannot see a single shred of good in this death. Not even a “oh, she touched so many lives” or “her spirit will shine forth” and definitely not a “well, we will see her in heaven some day.” This was a life too brief and though it was not my child, I found myself waking countless times these past couple of nights, waking with a silent scream in my throat, racing to look at my breathing child. It’s the most horrendous nightmare for any parent and, for a woman that I know and love, her nightmare happened. I just can’t fathom it.

Saturday we will attend a memorial for this sweet baby girl.

Sunday we will celebrate my sister’s birthday (sorry, dear sister, that the celebration of YOU is sandwiched between such sadness).

Monday I have chemo in the morning, followed by funeral and memorial for Kenny.

It all feels like so much, the emotional burden too great to bear. I find myself grown quiet and thoughtful these days.

Adam has been swamped with work this week and, though I understand and appreciate that that is what he has had to do, I’ve missed him. I don’t feel like I have had adequate time to process everything that is going on.

I find myself hoping that Anna will not see only death around her, but the beauty also. Beauty, where are you? Oh, life, please linger near us for a bit. We need you here.

Cancer / Family / every day life — 2 Comments
7
Jul 10

Today I have a case of the crazies

Ever have one of those days where it drags on so long and so painfully that you think that something has happened in the space/time continuum? Like, maybe somehow TWO bad days have been compressed into one day?

It might have something to do with the lack of sleep last night. No matter how sternly I scold myself for doing this, no matter how absolutely dreadfully not calming and not sleep-inducing this is, I still persist in googling cancer related facts and articles and all manner of frightening things late at night sometimes when I cannot sleep. Usually just prior to a scan. Because I am crazy, that is why.

I think that something deep inside of me is thinking that maybe if I keep searching I will come across that elusive website out there, the one devoted to explaining and predicting my entire life, including cancer status, disease progression, lifetimes of loved ones, etc. You know, the basics. For my edification. Wouldn’t that be nifty? I keep looking but I haven’t come across it yet.

I was trying to do a million things today: write, make phone calls, email, and all manner of assorted and sundry various things that kept me in my pajamas until (embarrassing!) 11 am. All the while, my tiny warlord conspired to keep my away from all my Very Important Activities by continually climbing on my lap, shouting during important phone calls and whining and requiring all manner of care. Yes, it’s my job to take care of her but I swear to you that Anna was being especially needy today. I felt….exasperated. Yes, that is exactly it. Exasperated in the way that you feel when there is the tiny bubble of laughter that forms in the back of your throat when you think about how ridiculous that it is that you are trying to call your doctor regarding your Very Important Scan while your daughter is screaming “MAMA COME WIPE ME NOW! RIGHT NOW!” and you realize that it is all faintly ridiculous, the idea that stay-at-home Moms have all this free time. Exasperated also in the sort of way that keeps your fondness for the irritating habits of your beloved child at the forefront: I could still think to myself, despite the inconvenience, that, GEEZ, is she ever cute! as she creates enormous messes requiring massive cleanup effort on my part. Really, I am not being sarcastic. I think that Anna is so adorable that I sometimes have to make myself get all stern because otherwise I melt at the perfection of her squeaky little voice.

Swimming lesson went well today. She is slowly getting used to the idea of being on her back in the water (previously a big fear for her). Despite the fact that she repeatedly told me, throughout the day, starting from breakfast time, that she did NOT want to go to swim lesson and she would NOT go, not EVER EVER EVER, she did just great when I handed her over to her teacher. Boy, was I ever glad that she did not make good on her threat to hit her teacher (no, seriously, she really told me that at lunch, that if I made her go to swim lesson she would hit Rachel. “I hope you won’t really do that,” I replied, looking her straight in the eye).

Everything feels so crazy right now. I kind of want to fastforward a little bit to the part where things are a bit more slowed down and mellow. Can I hope for that? I can also spin all sorts of fantastical maladventures regarding my in-the-air cancer status. I have refused to allow Adam to make plans regarding either (a) travel or (b) kitchen remodel, until after I get the results of these scans because I can’t go there until I get it in my head that we aren’t headed into another storm that we have to brace ourselves against.

Tomorrow: scan. Friday: blood draw and (hopefully) preliminary scan results. Then it is a whirlwind of family and activities because of Kenny’s upcoming memorial service and (gulp) oh, yeah, another few visits to the Cancer Center.

Cancer / every day life — 3 Comments
5
Jul 10

Thirty Four

Tomorrow I turn thirty four. A respectable age, I’d like to think. One that puts me well beyond childhood, transplanted firmly into the place where I can reasonably be expected to have at least some of my shit together.

I think I’m doing all right? Am I doing all right?

Well. I’m not thrilled to have my upcoming scan. I would be lying if I were to tell you that it’s no big thing. I almost gave myself a panic attack today, just thinking about it. I mean…..Kenny and I were diagnosed with the same kind of cancer around the same time. We achieved remission. His came back and then he died. Do you see how this might give me pause? How of course it’s the optimistic thing to think, “oh, mine will stay away! Of course it will!” because the sequence of events these last couple of weeks has put the other side of things to close to my face, so close that I can’t close my eyes without flashes, like something from a horror film, of this or that or the other thing. The not-optimistic thing. The thing that spells out my fear. The thing that says that they’re not just scanning me for fun, that I can’t just go out there in the world and pretend like none of this happened because it did happen and it is happening and it could continue to happen in a very real, very bad way.

See? Just a little bit panicked.

But. My life is currently much too awesome to get stuck in that entirely so I’m fighting it. I really am enjoying these currently enjoyable moments because they are that good. Because I like my family, I like my friends, I like good food, I like my little house. And so long as I can keep the existential worry at bay–or, at the very least, don’t let it consume me entirely–everything is pretty much okay.

That’s just pretty much honestly exactly where I am.

I am Jennifer Anne Johnson Gray and I am (almost) 34 years old. I am a wife and a mother and a daughter and a sister and an aunt and a friend. I had cancer and I am still here. I am here!

I’m mourning the death of my uncle. I’m living in fear of my cancer coming back. But, most of all, I’m living my life–I’m eating and drinking and running and hugging and singing and crying and taking a big old huge fistful of life and drawing it to me like a security blanket, holding it up to my chest and stroking it, over and over, to ground myself, to help me remember that I am here now. That’s all I’ve got: I’m here now.

Cancer / Family — 2 Comments
30
Jun 10

Journeying

There are the days that I think of in my life, the days where I look around and take a mental imprint and think this is the day. This is the day I get married. This is the day my baby is born. This is the day I learn I have cancer. This is the day.

I still haven’t had adequate time or emotional space to do the thinking and feeling required to sort this all out but….my uncle is nearing the end of his life. This is the day. I think as I listen to Mom’s voice on the phone, eyes blurring. We knew it might come to this when we found out the cancer came back.

I type and erase, retype and erase, over and over because I cannot abide the sound of my voice here. No matter what I write it seems to all come back to me, me, me. It makes me uncomfortable that I am here, in someone’s last hours and days here on earth, thinking of myself so much.

I do think about him. I stared for many long minutes today at the picture of him on the wall in his bedroom, the picture of him when he was young and had all his hair and the strength to lift things and garden and run around with his dog. The days when he would sit and listen to the ball games and argue with us about who was the better team (loyal Sox fan that he was, and loyal Dodgers fans that we are). The days of “Jenny!” (the days when he could reliably remember me, my name, how I fit into his life; not always the case these days).

But I also think of myself. Of the disease that is killing him. The same disease that I had. The disease he had that came back. I fear all the more for my upcoming scans. I don’t want to be in a hospital bed in my bedroom. I don’t want that to be me. Fear. Fear. Fear.

I think about my parents. I think about my other aunts and uncles and about how this is the first of this generation and what does that mean? Things happen. Shit happens. People are born, people live, people die. Circle of life but I don’t want that reality right now. Hell, I don’t want that for the people I love, not ever.

My first reaction is to run far, far away. But I know, in the end, that that is not what I really want. That that could be a regret that I would carry with me a long, long time. So today I went. I went and I stayed and I held his hand and I told him I love him and I helped Mom recite names to him in a way that soothed his weary eyes down, down, down.

His fluid-filled coughs make my heart seize.

I know I don’t want this to be long and hard. I don’t want it to hurt. But I don’t want it to happen either.

This isn’t a fair comparison but I think of Jack the Cat, the way I held his body as he left this world. The way he grew so still. I don’t want to think about Kenny growing so still.

I do not have the comfort that so many of my family members have. My year of cancer was also the year I lost my religion, my faith, my belief in the comfort of God and heaven. It’s a relief for me, most of the time, but right now I wish, just a little bit, for a glimmer of my old faith, the ability to believe that he is bound for a better place, a place of wholeness and rest. All that rolls into my own head is the words that I use to talk about death with Anna.

Mama, what is dead?

Well, baby, you know how you and me and Daddy and Lucky and all of your friends can all move and breathe and eat and drink?

Yes.

When something is dead it doesn’t do any of those things. It doesn’t move, or breathe. It doesn’t eat or drink. Its body is here but it isn’t really with us in the same way anymore. It’s just the body left.

Oh.

***
All I can think of is that stillness, a stillness more still than the most still stillness you could ever imagine. Silent. Unchanging. A gaping whole of nothing, filled only by the sounds of those who are left–the tears, the mourning.

Cancer / Family / every day life — 3 Comments
28
Jun 10

Especially Ordinary

Had such a productive day today. The me of 2 years ago (when Anna was 6 months old) cannot even fathom having such a day as I had today. I got up early (by my own choice; I know, I’m crazy) and baked bagels and canned apricots and ate breakfast and took a shower and drove snacks to Anna’s school (the parents rotate turns bringing snacks for all the kids) and then went to the grocery store. All this by 10 am. I know, I rock.

And then we had a great lazy beach morning/early afternoon. I only had to break up one preschooler physical altercation and clean up one pee pee accident (sometimes she gets distracted playing and doesn’t want to stop for the potty and who can blame her for that!??!?). I got to hold babies and talk with my girlfriends and it was really, really awesome.

I came home and baked a cake and made gelato while Anna helped by breaking up the chocolate into chunks and then washing the dishes….washing them really, really well for an hour. Okay, so it wasn’t so much washing as it was playing and splashing and pretending in the water but that was ok because she was content and so was I.

It’s just….a good day.

Sometimes, I tear up at the thought of this, the everydayness of this kind of day. The beauteousness of doing things that make me happy. The smallness of fingers playing with playdough, the smile and laughter, the ordinariness that is so ordinary and yet so special. These are the moments I treasure and these are the moments that make my heart clench a bit because…what if? What if there are less of these moments than I thought? The fear is there, right behind the sweetness.

I don’t live in the fear but I am acknowledging it just the same. None of us know how many days we have here. Not a single one of us. So. It’s all we can do: to be, to breathe, to savor, to smile, to laugh, to hug, to kiss, to love. To live.

Cancer — 2 Comments
3
Jun 10

never far from my thoughts

I haven’t talked about it in a while, but the big ol’ C word (whisper “cancer”) is never gone from my mind. Obsessing at the moment about the necessity of scheduling my next scan (at the end of this month) and another four weeks of Rituxan maintenance chemo for the month of July. Reading about how the research is mixed on doing it this way (maintenance Rituxan for aggressive forms of diffuse large B cell lymphoma), not showing a whole lot of difference between adding this in and not…..it is all a gamble in the hopes of keeping the bad stuff at bay. Better to do it and feel like something is being done, than to sit back and hope and hope and hope. But it’s all about hope, isn’t it?

It’s one a.m. and I’m in my bad place again. Isn’t it always worse in the middle of the night? When there is no sunshine to chase away the shadows?

Cancer — No Comments
23
Apr 10

Really sick

We don’t have a television but I do enjoy watching some TV shows on Hulu (“with limited commercial interruption” as the announcer always says). The commercial that I’ve gotten for the last few times I’ve watched shows (it changes show to show based, I think?, on the type of show it is and what the anticipated audience is–or maybe it is particular to the viewer’s viewing patterns? I’m not sure. If so, hmmm….what does this say about me and the shows I watch?) is one to spread awareness of HPV and its connection with cervical cancer and other associated really bad things. There is a line in one of the ads (it is all about “what if” this and “what if” that) that says, “What if I got really sick?” (accompanying picture, bald woman sitting in what I think of as a “chemo chair”–sort of an imitation leather recliner–hooked up to an IV) and, to be honest, this portion of the ad freaks me the fuck out. It makes me feel sick, just watching it.

I know that they are going for the scare tactic with young women, trying to get them to be aware of the “what ifs” and all that but I have to say that from my standpoint, it can’t really work. It can’t because that is just an image to a young woman. That is just an idea of a cancer patient, of someone to pity. Of something that is, of course, bad…Bad bad, even….but not something that anyone who hasn’t been there can really connect with. You know it’s bad. You just don’t know how bad.

I have been trying to disconnect myself from that cancer patient image. I impatiently throw away all the letters from the Cancer Center (well, not bills, but informational flyers), most especially the invitations (sent every damn week, it seems) to attend the Young Adult Cancer Support Group. I just can’t go there because I don’t want to be there. I don’t want to think about that time. I don’t want to think about it, I don’t want to imagine it, I don’t want to wallow in it, I don’t want to obsess over it, I don’t even want to remember it.

But, secretly? I do. It is always with me. It is with me like the whorls on my fingertips, the breath in my lungs, the scars on my neck and my stomach. It is etched in my heart and my soul. It is the reason that I’ve lost my religion. It is within me as a fire and an anger and a deep, deep, immovable sadness. A reckoning. A counting of days since and from and to. A recollection of all manners of deep, dark times and startling beauty.

Being really sick? I don’t recommend it.

Cancer / Uncategorized — No Comments
28
Jan 10

Good News

We met with my oncologist today, who reiterated the message from his assistant yesterday. It is good news. There continues to be some reuptake in the mediastinum but it is consistent with a regenerating thymus, not cancer. Nothing to do now but finish out my last dose of this round of Rituxan (Monday) and then wait out the next 6 months until my next scan and round of drugs.

I still have all these big, messy feeling inside my chest. I told Adam that it felt a little bit like relief but it is all tangled up with this feeling of a need to release. It feels like weeping that got stuck in my chest, a feeling akin to that feeling you get when you need to sneeze and then almost do but it goes away? Like almost relief but not quite there?

So I was trying to identify that feeling, figure out what was going on with me. I do feel relief, of course I do, that this is good news, that there is no evidence of cancer. But it is so hard to pull back from the edge. It’s like every time I have a scan I am right there, teetering at the edge of the precipice, looking down into that deep dark chasm, that nightmare of treatments, with Death hanging out on my shoulder, whispering in my ear, his cold fingers intertwined in my hair, gripping me with hooked claws. Getting a clean scan allows me to take a step back, but I can still see the canyon from here. I haven’t gotten in my car and driven away from it. Death still haunts my dreams, revisits me in moments of weakness and anxiety.

But.

Good news. Good news. Good news.

We broke out the champagne last night (why not? life’s too short to delay celebrations such as this) and toasted to Good Health, to Love, to Life. This is the sweet comfort I have to hold on to for the moment: that I’m here now, living this life. That is all, honestly, that any of us can ask for at any given moment, isn’t it?

Uncategorized — No Comments
22
Sep 09

Hello, and Welcome to My Pancreatic Surgery. I’ll be your tour guide.

I’ve started going to therapy again. I’m not ashamed to admit that. Last year was kind of big, in the way that really hard things have a tendency to cut into all the available head and heart and life space, invading into all the good, regular, relaxing, happy stuff. Remember: Miscarriage, Parents’ Divorce, Cancer. My personal trifecta of Top Three Things That Make a Year Shitty.

The awesome thing about my therapist is that she’s known me a long, long time. I started seeing her when I was in college. Our relationship hasn’t been a continuous one, just worked through some stuff in my early adulthood, then a big gap, then a bit post-Anna (having a baby shakes things up, you know?), and now again, just this last month. It helps to not have to explain the backstory. We can tie things in to, say, stuff from childhood or whatever. Awesome.

Anyway, point being, today I realized that I’ve been *so* hello classic avoidance re: my pancreatic surgery. I don’t think I’ve even blogged much about it because, classic avoidance style, not thinking or talking about something = it doesn’t happen….right? Right? Oh…..wait.

So I have this whole emotional block over the fact that DUM DUM DUM (threatening music) Here We Go Again. With the health stuff. With hospitals and forced separations from my child. With physical pain and discomfort and asking people for help. With routines thrown to the wind. With fear for the what ifs.

Me no like.

And every time I think about it I get a little twitch under my eye and I can’t think straight and I have to do some deep breathing to get myself under control. I have to have Adam talk me down, remind me of all the reasons why, yes, of course, I really do have to do this. It’s not really an option to not do it. It’s not really an option to wait. The recommendation is to do it within the year. There never really is a good time for major surgery, is there?

We did the whole wait and watch thing over the past year and the cyst has gotten bigger. It’s beyond the point at which they can just—blip!–take the little sucker off the surface of the pancreas. It’s too big for that, it’s integral to the middle of the organ (organ, right? Is that the right term, medical people?). The surgeons told me that the longer we wait, the more difficult the surgery will be, and the more chance of it being more invasive. The sooner we do it, the better chance I have of preserving some portion of the pancreas. I’m told I’m about a 60/40 for having a central pancreatectomy, where a portion of the pancreas is removed, preserving the duodenum and pancreatic functioning–though some replumbing will have to happen with this as well, they can’t just cut out a central chunk and presto changeo no problemo–,as opposed to a Whipple procedure, where…..well, you know what? Just google it. Basically, a whole bunch of stuff is taken out, including a portion of the stomach, some of the duodenum, much of the pancreas, the bile duct, and the gallbladder. The longer I wait to have the surgery, the more those odds start to change, as this growth inside of me gets bigger and invades more stuff. The longer I wait, the greater the potential for pain and effects of the tumor itself, impeding normal digestive functioning. So far, I don’t think I’ve had much.

And OH GOD, besides all the worries over the surgery itself and the recovery and all of that, wouldn’t you know that I’m still worried about the possibility of malignancy? I just can’t let that one go. According to reports, my cyst is classic serous cystadenoma, with Swiss cheese appearance, multi-lobular. So, hopefully it’s that. There’s always the chance it isn’t. There’s always the chance (tiny though it is) that this tumor, the type which is almost always benign, isn’t benign in my case (I’ve read something like less than 2% of the time it is malignant, but I understand statistics well enough to realize that someone makes up that 2% and I’m not special enough to assume that I’m not that 2%). I’ve realized that my time with cancer has made me trust a little less in having statistics on my side. I’m not exactly the classic NHL patient, nor am I the classic patient with a serous cystadenoma–both of which are much more typical in a person in their 60’s. Ha! Me and my old person’s diseases. I’m like 33 going on 63. Good times. Yes. So I’m worried that this is a malignancy of the pancreas in which case, I’m screwed. I’m as good as dead. Really, those are the odds, and we all know it.

I know, I know, look on the bright side, don’t assume the worst, and all that. I’ve been doing that and it’s not helping. I have this need to do that and to also confront all of these fears up front, lay them out, take a good look at them. Look them in the eye. Size them up. I have to know what things I’m up against. That’s just me, that’s my personality. I like to know.

I also realized today that as crazy and sudden and disastrous as my cancer diagnosis a year ago was (it was something like 10 days from initial suspicion to hospitalization and first round of chemo), I also didn’t have to sit around and wonder “what if” because I didn’t have the luxury of time. Oh, sure, I did the middle of the night googling and crying and freaking out thing when that lump showed up on my neck. I sure as hell did it after I saw the ENT who said, “Oh, Hmm, that doesn’t look good to me,” but that phase was over soon and then we were on to treatment and we were rushing on and doing things and knowing things and moving forward. And here…well, I’ve known about this lump on my pancreas for a year now. A year! And it’s still this niggling little worry, like a stone in my shoe, except it’s been so long now and I’m tired of carrying the worry around. It’s making me exhausted.

And now I guess I’m hoping that by throwing this out there into the world I will not just elicit your pity (please, really, not the thing I’m going for). I’m hoping that putting it out there will take some of it off of me, in the way that it helps to have others to help carry the load. I’ll let some of you hold that one for me, just a little bit. Won’t you? I’d like to have a chance to walk, unburdened, light on my feet (that wonderful feeling after removing a heavy load from one’s back, of weightlessness, of flying). Because I feel like I need to strengthen up a bit for what’s to come. Even if it is just a benign tumor, a stupid growth, it’s still coming out and it’s still going to be major upheaval in our lives. It’s still going to be this little blip. It’s still going to be hard for us, for Anna (Oh, I could write pages and pages of my worries for how this will affect Anna, but I’ll spare you for now). I still want, more than anything, to get this over with. To be done with it. To move on, forward, healthy, free.

November 6: we drive to Stanford for Pre-Op appointments

November 7 & 8: lovely weekend in the Bay Area, hopefully eat lots of delicious, delicious food to prepare for my time with TPN and post-surgical digestive difficulties

November 9: Surgery, followed by approx. one week hospital stay

6 week recovery with no heavy lifting and dietary restraints

3-4 months (approx) until resumption of normal life functioning