Posts Tagged: Cancer


5
Jun 13

Normal

All my labs came back totally and completely normal. Normal = good. So, apparently I just need to do things like eat balanced meals at regular intervals, hydrate, exercise, and (duh duh DUH) sleep. Sleep! I miss sleep. I was being good about going to bed early and getting as much sleep as possible. Don’t ask how Lily sleeps; I actually think that she is a pretty good sleeper, all things considered. She definitely sleeps better than Anna did at this age (but, then again, so do about 99% of the babies that I have heard of). Yes, we are still up at night a bit but I am, in general, okay with this. I don’t need suggestions about getting her to sleep through the night. I do believe that she will get there when she is ready. She actually was sleeping through the night (miracle of all miracles) for a while and then she just stopped. And now what I suspect is that she is so super busy throughout the day that she is not taking in the amount of milk that she needs so she wakes at night to compensate. So, anyway, point being, I need to get myself in bed earlier at night (so hard! There is always so much to do! And I enjoy having my grown up, no children time–both with Adam when he is home and alone when he travels), I need to nap when possible. Sleep, sleep, sleep.

Part of me feels like a silly hypochondriac for ever worrying about my exhaustion. The other part of me, the part that is more gentle and forgiving, understands that once someone (me) has had cancer, it’s hard to not take any health complaint seriously. Because there was that time, you know, that time when it seemed like no big deal but actually it was. So kudos to me for being proactive but sorry for being a drama queen. See? I feel mixed about it. I do feel a little embarrassed.

I feel like the new baby fog is starting to lift so that is good. Now that Lily is eating solids in addition to nursing, there are more times when I am able to leave her with others without feeling like I have to rush immediately back home. I am gaining back a little bit of that all-important “me time.” I am a little sad about this, truth be told! Not too much longer before Daddy will do just as well as Mama. It’s all a part of the growing up. I’m excited for this, but it’s bittersweet. We are moving on to the next phase of our lives.

Normal. It’s all going to be okay. I have all confidence that I will reach that 5 year CURED mark, come January 2014. Cured! Cured, people! Can you believe it????


13
Dec 12

Growing up

There are some things about my life that have allowed me to remain blissfully child-like. My sheltered upbringing, the fact that I went from being under my parent’s roof to college and then straight to wedded bliss (while still remaining in school, never having to really and truly support myself). There have been some ways in which it is only now, in my mid-30’s, that life has become more “real” (whatever that means). I told Adam on our last trip to Disneyland (last month, for Anna’s birthday) that this was the first time that the place had lost its magic for me (I am, however, 100% aware that this was because I was caring for an infant–an INFANT, for crying out loud! This is no place for a baby!–and not running around like a kid myself and riding all the rides and laughing and eating candy).

The holidays are different now, too, but really only since that one year, the bad year, the year that I lost another baby and got cancer and my parents got divorced. That last part was kind of a biggie for me. Because even though my life circumstances were changing, even though I was losing my faith in myself and in God and in the rightness of the universe, things didn’t really fall apart for me until my parents separated. Because of all things, doesn’t every kid, or grownup, for that matter (or is this just me????) want to go back home? Back to the safety and comfort of the way things were, the way things are, the way things should (will?) always be? And when that safety net is gone…poof…everything starts to look a little different. I started to understand, to really and truly understand, that there are no guarantees. That health and money and friends and family and home and traditions all have the chance to be nothing more than temporary constructs, sometimes shakily built and easily ruined. Some, but not all. That was the year that I really and truly grew up.

I don’t mean this as a finger-pointing accusation (of my parents), though, not by any means. I love them both. Things happen. We all only do the best that we can do and then we try to grow. What matters is not what’s in the past, what matters is how we deal with what is before us now.

I’ve been talking a bit about my cancer with some new friends that I’ve met since Lily’s birth. I can feel it again, these feelings of the way my life became instantly segmented during that time. I think of it as Before Cancer, After Cancer. Everything changed. And yet…it didn’t. I changed. I became who I was always intended to become. I like the me that I am, I just wish that it didn’t have to have happened the way it did.

Sometimes I miss the life Before Cancer. In hindsight, it seems like a simpler time. I know that this time had its own complications and disappointments but I long for that feeling of being childlike. I miss giggling with my sister all night long the night before Christmas, wondering what presents would be under the tree. I miss listening to my favorite Christmas album (on cassette, of course) on my little purple radio. I miss these things because there is no recapturing of innocence. I can feel a temporary sense of this innocence through my daughter’s eyes–the look on her face when she sees the tree Christmas morning, the belief she has, without any doubt, that things will always be the way they are–she will always make pizzelle on Christmas eve and she will always get tucked into her flowered sheets in her pink room with her stuffed animal under her arm and she will always have her mommy and daddy to take care of her.

Do any of us ever lose that longing to return to that place?

I like being the parent, I do. I like being the one to wrap the presents and the one to organize the building of the gingerbread house and the holiday parties. But I still long for that feeling.

The goodness of this season, for me, for now, is not found in searching back in the past (though I do treasure my memories). It is in resting in what is now, with the concrete understanding that this, too, is fleeting: the good and the bad. We do what we can do to construct the moments we want and then we have to let it go. It’s beautiful and it’s tragic and it’s just the way life is, melancholic and lovely, all at once.


23
Jul 12

Great News

No, not really Baby related (still pregnant….39 weeks + 3 days and counting….) but great news nonetheless. Last week I had a visit with my oncologist (I wanted to touch base with him as I had missed my January–which is when my regularly scheduled once-a-year visit happens–appointment due to a scheduling snafu). I went into the office feeling strange. What a world of difference for me, now, as compared to the me back then. The “ill” me. I remember clinging to Adam’s arm, feeling a sense of dread as I entered the building. The anticipation of the needle poke and the drugs and the feeling as I left, already pukey and exhausted beyond belief. This time, I entered with a spring in my (pregnant) step. I have hair, I have my health.

I had more than one person (a receptionist, my oncologist’s assistant) tell me that I had “made their day,” just simply by being there, being healthy, being the me I am today. I am humbled by this.

So the visit goes like this:

My oncologist, Dr. Kass, comes into the room, smiles broadly, and takes a chair, pulling it up to me so that we are face to face. He is jovial. We chat briefly about my health, Adam, other things. He says, “I love being proved wrong!” When I look at him quizzically, he reminds me that at our last visit we had discussed fertility and his belief was that my fertility was most certainly compromised by the chemotherapy drugs that had been used during the course of my treatment. We discussed moving on, being content with what we have. The beauty and wonder of Anna, our one and only. And, yet, here I am, a year and a half later, with such evidence of new life! We laugh. I ask about the future, about visits and checks and scans. He nods, understanding my need to have a plan, a schedule, an understanding of what to expect.

Then he looks at me and gives me a speech that I hope I never forget. He tells me that, yes, it is his job to follow me closely, to be on top of my health and to be watchful and mindful, knowing that I am unique for having had cancer. But, he says, as far as he is concerned, he considers me a survivor. He considers me cured. He has utmost confidence that my number one priority, at this point, should be being a mother, a wife, a friend, a healthy young woman who has the rest of her life to live.

“We’re not going to do anything crazy during this time, while you are pregnant, while you have an infant, while you are breastfeeding,” he says. “Call me when things settle down a bit and we can chat. Let’s worry about scans later. Right now, just enjoy everything, enjoy being here.”

We stand, smile, hug, and part. I feel light, like there is light pouring from my heart center, from my chest, from the place where my cancer used to be. I feel radiant, and young, and healthy and released. It is a gift, life in all of its forms, and I feel lucky to be here, lucky to be alive, lucky to be me.


22
Jul 11

The Scare

Yesterday didn’t turn out at all the way that I had thought it would.

Sunday morning I noticed a little lump under my arm. [Wait, wait, wait, wait, wait. I should preface all of this with an “I’m Fine” because I am.] I ignored it. Monday it was still there. I ignored it. Tuesday……I started thinking about it. I thought about calling the doctor. I mentioned it to a friend. And then ignored it. Wednesday….was really busy and even though I was thinking about it a bit more, I didn’t have all that much time to really think about it. Thursday, I woke up in the morning and knew that I had to think about it. That not thinking about, not dealing with it, was really incredibly stupid for someone who has had Lumps Of A Serious Nature. I called the doctor. She ordered tests. I tried to not let this freak me out but actually I started maybe just a little bit going insane. I spent the morning considering how our lives would change if my cancer had returned. I started wondering if this was a recurrence of lymphoma or if it was breast cancer. I started planning out how I would tell people. I tried very hard not to cry as I considered my daughter as a motherless child because ohgod, I was surely going to die this time.

Thursday at 1:15 pm I had my first mammogram. Ouch. I got into all manner of awkward poses to try and capture the underarm lump. As a special bonus prize, I also had my first non-vaginal or abdominal ultrasound. It was weird. They use the same goo on your armpit that they do on your belly when you are pregnant and somehow that seemed weird. The tech took a supremely….horrifically…long time capturing images of my armpit. I tried to surreptitiously glance at the screen but–who am I kidding–all it looked like was black and white and grey fuzzy blobs. Even the pictures that showed right and left armpit images side by side looked exactly the same to me. The techs never tell you anything, I knew that. This one stepped out into the hallway and consulted with the doctor, who had to go and do a biopsy and therefore could not come and ease my mind in any way. I had to put on my clothes and await my fate. I drove myself to Five Points and aimlessly wandered around Ross, for some reason. I didn’t buy anything (thank goodness; buying things when one thinks one is dying is probably not a super fantastic idea).

My doctor’s office called me at 3:45 and asked me to come in at 4. They said it was good news, but I was suspicious that this was just a lure to get me in there and then deal the blow. Surprisingly, it was not a ruse. Everything really was (is) okay. I do have a weird lump in my left underarm. It is a lymph node (YES! So glad that I am not a complete idiot in thinking this!) and it is kind of hard, but it appears that (this is the sort of embarrassing part) I had just cut myself shaving (just the tiniest little cut) and it got a little infected and the lymph node was just doing its thing that they sometimes do when there is a localized infection.

And my doctor hugged me as she explained this, told me to get some antibacterial soap and to lay off the shaving for a few days (oof, too bad it is summer and my armpit hair is so easily on display in short sleeves and tanks).

She also said that I did the absolute correct thing in calling. She did not shame me. And for this I am grateful.

It is easy for me to feel like the patient who cries wolf. The hypochondriac. The one who notices any little wacky thing and calls the doctor and then it ends up being nothing more than irritation from shaving. Or acid reflux (remember that one? That one landed me in the ER!). The problem is, there was this one time when I got The Lump and it wasn’t just any little lump, it was a Very Big Very Serious Lump and ever since then, my sense of medical safety, my sense that my body is generally okay, has been shaken. I’m not sure that I can depend on my body. I’m really not at all sure that I am going to be okay, that my cancer is not going to return, that some other cancer will come, that some other disease will be the end of me. I don’t mean to sound overly dramatic, and goodness knows that I do have a very real sense of embarrassment over jumping from tiny pea-sized lump to I AM GOING TO DIE, but I also know that my innocence is gone. I know that bad stuff can and does happen and sometimes it happens to other people and sometimes it happens to me. There is no escaping this, there is no going back in time.

It was a weird day.

I didn’t tell many people what was going on–just pretty much kept it to myself, Adam, my mom, and maybe a couple of others. I didn’t get on Facebook and announce that I had a lump. I think I was reality-based enough to know that, statistically, the chances were pretty darn good that it was nothing. But I couldn’t assume it was nothing. It is like my mind just had to go there.

The only good thing about this is (a) I really am okay and I don’t have cancer again, and (b) there is something deliciously wonderful about thinking that you are going to die and then realizing that you are not. It is like the feeling you get after you’ve been on a week long backpacking trip and you take that first shower and wash all that dirt off of you. It is like coming home from foreign travel and indulging in your very favorite hometown restaurant. It is like that time when Adam went to Europe on business for two weeks and he came home and just hugging him and hearing his voice was the most wonderful thing in the world. It is all of these things and more because all of these things–the sweet and savory and wonderful things of life–are only parts of what it is to be alive, and having a health scare reminds me, once again, about the true beauty of life. It makes the colors brighter, the sounds crisper, the faces around me even more dearer. It turns my eye from the dog hair and dust on my worn wood floors to the pictures of happy memories, the squeaky voice of my dear little Anna, the strong warm arms of the man I love wrapped around me, the first bite of homemade cookies made by mom because she was thinking about me and worried about me and it was all she could do to pass the time while we waited to hear.

I don’t wish for the scares. God knows I don’t.

But I think I’ll take advantage of the after-effects of good news. I’m letting the beauty of my life smack me upside the head, shake me up, wake me up. Life is beautiful and I am here to live it.


11
Jul 11

Almost Famous

Depending who you ask, I guess. I am up on the New York Times website, in a cool interactive feature that they are calling “Picture Your Life After Cancer.”

In case you can’t get it to come up (the gallery doesn’t work on my iPhone), this is the picture and these are the words that accompany it:

Today, after cancer, I am vulnerable and I am soft and I am emotional. I am gritty and I am tough and I am brave and I am bold. I am afraid, and I am ready to kick some ass. Cancer has made me examine my deepest emotions and traveled me through my darkest times. Cancer has strengthened my relationships and cancer has finally made me ready to go out there and live my life. I am not glad I had it, but without it I wouldn’t be the me that I am today.

I submitted it one night, a couple of weeks ago, when I couldn’t sleep. It was 2 am, and I came across it (I love the Health section of the NYT online), and I just wrote something up and submitted it, just like that. I heard back from them a couple of days later: they also chose my picture (well, the amazing Adrea Scheidler’s picture, to whom all credit for awesomeness of the picture is due!) and words to be in a book that is being put out by the American Cancer Society, featuring approximately 200 of these pictures from the website. It is scheduled to come out in the Fall of 2012.

So….almost famous. Yep.

In all seriousness, I am happy for Adrea (who does amazing work and with whom I have great synergy) to get exposure for her photography. I am happy to get my words out there, because this is the message of my life: be honest and true and live like you mean it. I don’t hope that other people get cancer, but I hope that they feel this: that their lives are still important, meaningful, and beautiful. That they, too, can live through this.


21
Jun 11

Flow

This morning I am bleary-eyed and headachy. I want nothing more than to crawl back between my covers for some more sleep. But lack of sleep was so worth it last night, as I sat at my computer and typed out 5,000+ words. It was midnight, 1 am, 2 am, 3 am and the time passed like minutes instead of the hours it really was.

Flow.

Those are the times of being truly alive. I feel passion in what I write. I am pumping out a shitty first draft (thank you, Anne Lamott, for putting words to what I know I need to do or else I am paralyzed by the impossible quest for perfection in writing it all down). It is self-indulgent and I wrote it when weepy and alone in a silent house in the middle of the night, but it was also cathartic and powerful. I realized last night, that as much as I blogged about so much over these last few years, I was holding something back, and now I could truly let it be. It won’t be the thing to be read by anything more than a handful of people, but in simply acknowledging it, I felt a release.

So today when I feel like hiding out or doing some lazy parenting or feeling angry about being so tired, I’ll remember this: that sometimes staying up all night is the cure that is needed for the disease that you didn’t even know you had.

It can burn me from the inside out, slowly but surely, just like something eating me alive and making it difficult to breathe. It is me, coming out from me, from silence to voice, from a whisper to a yell, from a cry to a song. Vulnerable to strong. Embracing it all.


13
Jun 11

The Something I Want to Hold On To

Perspective.

I have been given this incredible gift. It is a gift, and it is a curse.

What I know now, I didn’t always know. I thought I knew it, but I only knew it on an intellectual level; I didn’t know it on a soul, life-changing level. I didn’t know it in the way that it affected my everyday life.

And what it is, is this: THIS is life.

No, really. That is it.

THIS is Life! And, moreover, THIS is MY life.

It doesn’t sound profound, or wise. It sounds like, duh, well obviously. This is my life….yawn. Whatev.

I mean that in the way that I don’t want to be chasing after something else. I want to dream, but I want to dream my dreams. I want to be selfish in the way that people who know that they only have limited time on this earth are selfish, because I have limited time on this earth (No, I’m still in remission, I mean that in the way that we ALL have limited time on this earth). I don’t want to dream other people’s dreams. I don’t want to act out other people’s ideas for my life. I don’t want to force things. I want to enjoy this. I want to do what counts. I don’t want to daydream, I don’t want to settle.

This is my life. I want to live it.


21
Mar 11

Stacks and stacks and stacks

I am trying to organize my medical records, pharmacy receipts, paid medical bills, and health insurance forms and paperwork from 2008 until the present. You should see how many pieces of paper this is. No, on second thought, you should not. It is completely overwhelming and would certainly ruin your day. Bleh.

I have grand plans to get everything organized and then scan it all so that it is digital. Brilliant, eh? But first I think it is best to get it all chronological. What a mess. Why did I let it get this messy? Oh, yeah, I was sort of sick or something.


15
Mar 11

Still

I still find myself doing it….prowling cancer message boards, typing in search terms into Google. Trying to find the answers to something. Trying to find my life, writ large. Trying to see my future. Trying to find someone who has lived my past, my present, my future.

I don’t think it is out there.

I didn’t used to be so obsessed with knowing what my life held. I held vague ideals. I wanted things. But it was all so abstract.

Now I have terms, I have diagnoses. I have statistics. I have knowledge of things like Diffuse Large B Cell NHL. But I still don’t have answers, not now, not when I crave them the most, crave them with an intensity unmatched by my former, cancer-free self.

I live in the two steps forward, one step back mode. I am afraid to put myself out there. I am unsure what my path is in life….now. Who am I? What am I doing here? And, most importantly, who WILL I be?

I become re-obsessed with numbers and figures. With terms like 5 year survival rate. I can’t let the numbers, the statistics, define me and yet I can’t leave them alone. They are always with me. They are a part of me. I can’t let them die like the rogue cells that were in me two years ago.

I’m moving forward, I’m looking back.


2
Mar 11

Getting my mind straightened out

I was just casually looking back over my iPhoto pictures which hardly ever ends up being a casual thing, at least not if I go back a couple of years. It’s like….ok….here I am now, everything great….go backwards a bit and BAM! Bald Jen. Sick Jen. Then pre-cancer Jen. Aaaaaw, the sweet, innocent, young thing. Sniff sniff.

I can’t look at those pictures without thinking about how much I’ve (cheesy) matured these last couple of years. I want to say “aged” but it’s more than that. It’s more than a few grey hairs and some laugh lines. It’s like….a deeper understanding of life. A desire for more meaningful relationships. A totally and completely changed perception of….everything. Everything!

I’m still reeling from it. Even now. Even yearspast it. I still do that thing where I wake up and then remember the bad news (Cancer! Me!) and do a little freak out. It’s over and yet it’s not because it is still there, in my head.

I look back at those pictures and I see a woman who was more rounded and expectant, in so many ways: pregnant. Mother of a very small child, a less-than-two-year old. Ready for the wonderful new surprises that life was going to throw my way. But then it was like a wave of the evil fairy’s (ack! too many Disney movies watched with Anna lately!) magic wand and no more baby, no more hair, usher in the sickness and the heartache.

I’m still trying to get it all straightened out in my mind.

I feel like I’ve come home from a war and I’m trying to get used to wearing civilian clothing instead of my fatigues. Like I’m trying very hard to fit in but not really feeling it. Like a rush of time has come past and everything else has swooshed past me and I remain behind, running to catch up. Like I’ve been asleep while everyone else has been living their normal lives and I’m trying to rub the sleep from my eyes and figure out how they are doing what they’re doing.

Everybody wants me to celebrate and I feel like I’m only barely beginning to round the corner into health. This is my year, right? From now until February 2012 (seeing as how my last chemo was the beginning of February 2011): this is my year to get back on track. To find myself and rescue the ME that I know is still in there, somewhere.