Flying Solo

Today I visited with my wonderful therapist (psychiatrist, to be more precise) Dr. Baer for the last time. Dr. Baer is moving to another state, and I for one am sad to see her go. She has been instrumental in helping me to learn and grow and come to new levels of acceptance about my path, and I am extraordinarily grateful to her.

I am going to miss her.

I am trying to reach the acceptance stage of my grief over the changes in my life that have occured since my diagnosis. I am trying to move on, recognizing that I am forever changed, and accepting those changes.

Some of those changes are physical. I am coming to terms, very slowly, with the fact that my reconstruction is not going well, and may never go well. Perhaps if I did another ten surgeries I could get to the place I thought I'd get...but I don't have it in me. I am making the choice to stop having surgery after the next surgery, however flawed my results may be. I am not going to be whole, complete, and pieced back together physically. In order to become mentally whole, I am going to have to learn to accept these physical flaws.

I can no longer delude myself that "one day this will be better." I promised Tessa that one day Mommy would have new nipples, but I forgot to say "in the right place" or "nipples that actually protrude." I thought I'd have a matched pair of breasts - sisters, if not identical twins - but instead I have distant cousins who don't even appear to know one another. Of course, the next surgery (October) might improve those things, but I am no longer counting on that. Anything that goes right in that regard will be a bonus, not an expectation.

And the physical symptoms that go along with treatment....I am learning to accept them, too. I have hot flashes so bad that I soak the bedsheets and find myself shivering in my sweaty, wet pajamas, unable to sleep I'm so cold. I'm accepting that a normal part of my life needs to be changing my pajamas once or twice in the middle of the night, just to be able to sleep. I am accepting that I am permanently fatigued, requiring MUCH more sleep than I used to (10 hours a night no longer refreshes me). I am accepting that I can not lift my arm straight up in the air. I am accepting that whenever I lift something, I get a simultaneously dull-sharp (don't ask, I can't explain it) pain in my chest where the surgeries have occurred. I am accepting that my menopausal skin is dry, flakey, and prone to acne (you've gotta be kidding me! - wait, I'm supposed to be accepting here....). I am accepting that I am well on the way to osteoporosis.

Or am I? I'm not so sure. When I write about this list, I realize I have to stop before I remember the rest of the list (achy joints, thin eyebrows, new facial hair NOT in my eyebrows, a keloid (?) scar on my eye from the surgery to make nipples, difficulty opening jars or doing other simple tasks because of lost upper body strength/damage.....shall I keep going? there's more!) because I don't really accept it. Who could? But I'm trying. I am really, really trying. And I"m closer than I used to be.

(I can not yet learn to accept or embrace my forgetfulness. Mid-sentence, I lose track. I am told things, and I forget them. I have a harder time following complex ideas, or tracking lists of ideas, or even managing my calendar. This, I do not accept. "Chemobrain" implies chemo, and chemo ended 2.5 years ago for me. I am horribly disappointed in my lack of brainpower since chemo.)

People ask me, regularly, "How are you doing?" with that look of concern in their eyes. I try to answer truthfully, and I also try to be positive. I AM grateful to be alive - more grateful each day. I have overcome so much. I am grateful to be out of the worst parts of treatment. I am grateful to have whole weeks pass without doctor's appointments. I am grateful to have enough energy to be involved with things other than cancer.

I am grateful to be Tessa's mother, and to be Ryan's wife.

It's been almost three years. I am ready to move on to something new, and to take on different challenges, and to set aside the old challenges.

I am trying to be compassionate at myself, and to not judge myself too harshly that I have learned so little in three years. I am trying to be patient with myself that three long years have passed, but I still (mentally) reside in Cancerland. I am trying to be compassionate with myself so that I do not feel ashamed of my failure to escape Cancerland when so much is going well. I am trying to focus on the positive.

Tough stuff.

I am learning, though, and proud of that learning. My work on my personal environmental impact, my work in charity, my spiritual explorings, my involvement with community...all are part of finding my new normal.

Tonight Ryan's out having a bit of down time, and Tessa and I baked together after dinner: banana bread with chocolate chips (gotta use those bananas!), herb garlic bread (a nice change of pace from the whole wheat flax bread we're so used to), and strawberry jam popovers. Tessa helped to measure, stir, and blend, and got to sample the popovers for dessert. We had PEPS in the morning, and this afternoon Tessa went to preschool while I visited the doc. After preschool, we had some friends over for a playdate (and they brought their puppy, who looks just like Shep did when he was small).

Lots to be grateful for. I have moved ahead; despite my frustration with fatigue, I couldn't have managed this one day two and a half years ago.

I will miss Dr. Baer; she is bright, articulate, and compassionate, and she has helped me so much. I wish her well in her new adventures with family.

Wish me well without her - I've done so much growing in the past six months, I hope that I can keep momentum without her guidance.

Kristina

(PS Yes, I'll find another therapist. But those who follow me know that I've had TERRIBLE luck with therapists. They're expensive, and some have been harmful more than helpful. When I have to, I"ll find a new one. But right now it's too much effort.)

Therapy

A good therapist is worth her weight in gold. At last, I have a good one.

Today was a good session. She allows me my fears, and then helps me with them.

The fears are still there. They'll never go away. But I'm learning how to manage them.

Moving forward

I didn't take anti-anxiety drugs yesterday, and I didn't fall apart. There's progress.

Today Tessa is not healthy but not sick either. She's feeling MUCH better than in the past few days, and for this I'm grateful. She's going to stay home from preschool, but I'm hopeful that she'll get better by next preschool (Thursday).

I have my therapist appointment today. For those of you who have never undergone therapy, let me tell you, it's not what I'd deem fun. It's really, really hard work. I need to face my demons, calling them up one by one, in order to fight them and overcome them. I need to face my failings and figure out how to deal with them. I need to acknowledge those things that I have no desire to face (prefering to sweep them under the carpet, as it were). It's not fun. Sometimes I cry.

But I know it's worthwhile. I know that this hard work will lead me to a better place. My therapist is wonderful - I think her wise beyond her years. She doesn't give me advice, she just asks questions. But her questions are often brilliant, getting to the heart of the matter. She somehow knows how to acknowledge and validate my feelings without judging me, and still lead me on a path to something better. (I need to change, this much is clear: without change, I'd be stuck where I am, which is unacceptable.)

So, later today while Jenny (who also has a sick kid) watches Tessa, I will go work on these things. I'd rather be at the spa.

Monday

"Tell me why I don't like Mondays..."

Tessa is still sleeping. It is 11am. She is sick. I will call the doctor when she wakes up.

She says the back of her neck hurts, as well as the back of her knee. I'm imagining the worst possible scenerios. I feel frozen with fear when I think of her being "really" sick and can't even write what I think that might be.

It's probably nothing. Just one of those kid things. Right?

We're supposed to be at Zoe's birthday in a half hour. Zoe is at the doctor with her brother right now, who is also sick.

I got a lovely call from Carolyn this morning. I love you, Carolyn....

Tonight is my KOMO interview. I hope I'm up to this - put on my inspirational face....

depression

This is getting really old. My thoughts sink, my heart aches, it's all I can do to get out of bed.

I took the anti-anxiety drug today. I'm trying so hard, but to little avail.

(sigh)

D

Now what is going on with me? Grumpy, moody, feeling bad about the world in general.

I put on a smiling face but I'm faking it. I'm tired of faking it! I just want to be happy.

Tuesday

Today we're going to visit my mom. We'll bring along some lentil soup for her and dad's lunch, we'll get in a nice visit, and we'll go swimming at the pool (Tessa and I will, that is). Then Tessa and I will go to Molbak's, which is a SeedSaver outlet (heirloom veggie seeds) and pick out some things for our garden before heading home again. Tonight's dinner will be a simple fritatta (Spanish Potato Fritatta, topped with salsa, with a side salad) because it's simple and fast. I didn't buy enough market potatoes (only one pound of Peruvian Blue, which went into yesterday's soup) so the potatoes today are from PCC; next week I'll get them at the market.

My mood is rather ho-hum blah. Bah humbug. I'll snap out of it; I always do.

Last night I went to bed at 8:30! I don't know why I was so tired. I got up at 7:30, for a whopping 11 hours in bed. I wonder what the deal with that is?

Mourning

This morning I visited my therapist.

I refuse to have a stigma associated with that statement. I suffer from depression, and I've experienced some very difficult times in my life, and I have some things to work out as a result of it. I will NOT be ashamed of these facts, despite societal pressures to be sweet and nice and um, not depressed.

Anyway, I saw my therapist. She pointed out that I'm mourning all of the changes in my life, and that it's no wonder that I struggle sometimes.

She pointed out that despite my best efforts, I'm still encountering the side effects of cancer on a daily basis.

Yes, daily. How's that for depressing? In addition to all of my fears about it returning, I struggle with some pretty basic stuff. I burned my finger on a pan last week - a tiny mark - and now I can't fit a ring over my finger, because I'm having mild lymphaedema. I can't put my left elbow to my head; when I lift that arm in certain ways, it hurts me. I can't carry Tessa on my left side, because it's not strong enough. I can't sleep well. I have hot flashes at night. My bones ache. I have osteopenia. My cholesterol is climbing. I have to take handfuls of drugs to fight these issues, and they all come with side effects and concerns.

Sorry if I'm bringing you down, but I think since I'm honest here I'm going to be honest here.

It's not pretty, is it? It's not nearly as nice to think about as my desire to have a vegetable garden, to pursue issues of spirituality, to enjoy sunny days. I do those things too, and I want to do those things more often, but I've got this other side to deal with. It's not pretty, it's not okay, and it's part of my life.

And I mourn that. I want to be PollyAnna (unfortunately, this is true) and I try my hardest, only to have these other things bang me down again. I am reminded a million times a day of my disease and how it impacts me. I'm not done, and I haven't moved on.

And this doesn't even touch on the cosmetic issues, and how ugly I find my own body.

Me, the granola girl, with implants. Covered in scars. Uneven. Me, the woman who took pride and joy in breastfeeding my daughter for 15 months, reveling in the femininity and nurturing in such an action...I don't even have nipples. Not real ones, and not fake ones. Nothing but scars.

I know, it's not all about boobs, it's about what's on the inside, and I like my new curls, and I'm glad that I'm (mostly) keeping the weight off, and it could be worse because I could have lost a leg, yada yada yada.

But let's face it, folks, it could be a lot better. Most people don't have to deal with this kind of crap, and I do. And those who deal with it generally deal with it much later in life. Not so for me.

I don't focus on it all the time, and I don't write about it every day, but let's get real. This is my life, and it impacts me, too. And I'm mourning that, and struggling how to deal with it.

In 2007, Melinda, a beautiful woman from the YSC boards, died. This weekend I met a Melinda with the same general physical characteristics......and it was hard to focus when talking to her for all my thinking about the other Melinda.

And the wondering: will it be me? Will this be my fate? How will my family cope? Will Ryan be able to manage being a single father? Will Tessa lose her joy if she loses her mother? Will my legacy be one of pain and loss if I die young? Will the pain at my loss overshadow what has gone well in my life, parenting, and being a wife and daughter?

Please don't answer these questions; they're rhetorical. But I need to be allowed to say them. I need to be allowed to mourn without being told "it could be worse" or "at least you're lucky that..." or "oh come on you'll be fine, I just know it." Yes, it could be worse, and there are others worse off than I am, and in many ways I'm very lucky. But NOBODY knows if I'll be fine, adn there is no way to find out.

It could be better. I wish things were easier. I wish I didn't have to struggle daily with these physical effects, and I wish my thoughts were easier.

Having these thoughts sucks the joy out of a lot of things. With every milestone (birthdays, holidays, seasons) I can't help but wonder if the next time the milestone comes around, I'll be in chemo again, winning or losing. That's no way to live. I'm working on working it out, but let me tell you, it's not easy.

So I'm mourning, and I hope that by mourning I can let some of it go, let some of it heal. I'm hoping that by saying some of it out loud, acknowledging my pain, that I can find ways to ease my pain.

I'm waiting.

Embarrassed

My phone has been ringing off the hook for a week.

And I haven't answered it.

My mood has been bleak, irrational, grumpy, short-tempered, frightened...and embarassed by all of these things.

It's not "normal" to feel this way. It's not nice of me to hide away from people who care about me.

Please understand, I'm trying to work through it. I can't explain it, myself. I'm trying to figure out my own head.

Health updates

I'm still plodding along. I'm doing all of the "right" things to get my head in shape, and I'm paying close attention to my symptoms etc. I'll get through it.

Tessa has developed an illness. This morning she awoke with a fever (100.6, but I'm more concerned about symptoms for a week leading up to this). We have a doctor's appointment at 2:40 today at the children's clinic in West Seattle.

My mom is hanging in there, and discovering how tedious and difficult bedrest can be.

Ryan leaves for a business trip tomorrow, returning late Wednesday.

We will miss Nina's birthday party today. Happy birthday, Nina.

Another day

I am slogging through it. I will get through it, but the path doesn't seem very clear. Ugh!

I took the old (smaller) dosage of Lexapro last night. The therapist pointed to some studies that show higher doses cause racing thoughts, etc. in some patients, particularly younger patients (teenagers). I'm no teenager but there is a correlation to my increased dosage and my crazy thoughts.

I just want to get past this. I want to be my usual, happy self. NOW. I don't even know myself when I feel like this.

Meds gone wrong

For some people, anti-depressants have an opposite effect.

I spoke on the phone to my therapist, and she fears that this may be happening to me. I'm cutting my dosage in half to see if this helps. Counterintuitive, perhaps, but I'm game for almost anything.

Thursday

My mood is bleak. If I snap at you, I apologize in advance. I'm trying to get in to my therapist to figure out what's going on: is it meds gone wrong, or I have I finally gone crazy?

My mom is coming home from the hospital today. Love you, Mom.

Arghhh

I feel depression sweeping over me.

WHAT IS WITH THAT?

It's scary. It's strange. I can intellectualize it, but I can not seem to overcome it.

I doubled my Lexapro dosage last week, and I'm hoping it helps. But I don't like this one bit.

hmmm

I have the gift, or the burden, of being pretty introspective.

On the one hand, my brain is able to say, "I find it interesting that you are so unmotivated. This looks like creeping depression, and there are steps you need to take to improve things. First...." (and then a list ensues, like call therapist, adjust anti-depressant, do meditation, keep gratitude lists, etc. etc.).

And on the other hand, I just want to pout and moan and be a grouch, and frankly, I feel rather entitled to do so.

I'm looking into side effects of Neurontin and Actonel, because those are my new drugs, and I feel like my mood has altered for the worse in the last week, since I started them.

I'm okay. The world is not ending. It just takes a lot more effort to be on time, to read my email, to return phone calls, to fold laundry than it should. This too shall pass.

Edited to add:
I just checked, and one of the side effects of Neurontin is "changes in mood," for which it says I should contact my doctor immediately. I emailed the fabulous Dr. Rinn to see what she says. My gut instinct says that this is it, but my gut instinct is not always correct. Frankly, I'd rather go back to sleeplessness than to feel this lousy, so my fingers are crossed that this IS the problem.

taking a break

Here is the letter I sent to Komen today.

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I am sorry that I have fallen off the map in the past week or so, with so many deadlines. I love the work with Komen, and I know how important it is.

I am coming to the realization (slowly and uncomfortably) that I need to take a break from dealing with breast cancer issues. Despite my desire to be active, hands-on with Komen, I am finding that it is taking an emotional toll. I am still struggling with the effects of my treatment and the handful of pills that I continue to take, and I need to schedule another surgery, and my mind is bogged down with thoughts of cancer. Unfortunately, though my work at Komen is positive, I think that it's adding to my inability to move on to a post-cancer space right now.

So, with regret, and with many apologies (and no small amount of embarrassment), I need to bow out for a while. Perhaps before this year's race, and certainly next year, I will be back, but in a better head space. I am spending some time trying to figure out my boundaries with cancer issues, and finding a better balance in my life. Next year Tessa will be in kindergarten and I won't have to juggle the times so much, and that will help, too.

My apologies for the inconvenience that I know this causes you.
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I feel weird about it, and have all kinds of other emotions as well, but I think it's what I need to do.

I wish this were not the case.

Drug update

On Monday, I took my first Actonel (bisphosphonate - bone builder). I am required to take it once a week, and when I take it, I need to abstain from food and drink (except water to wash it down) for a minimum of a half hour, and I need to remain upright. This is generally not a problem, as I don't wake up hungry (I'd happily skip breakfast except I know I shouldn't) although waiting for coffee makes me rather sad! The drug often causes nausea and flu-like symptoms, especially after the first couple of doses, and that may be why I felt lousy last night. I felt achy and tired beyond belief, but woke up feeling more normal. I'm relieved that this is all I'm experiencing from this med, as the list of side effects is long and scary.

I also went for my annual exam with my G.P. yesterday. We reviewed my cholesterol levels (210) and she explained that the overall number is misleading because my LDL is within acceptable levels and my HDL is above the minimum, so I'm actually doing quite well in that regard. Unfortunately (because I find it unpleasant) even though my cervix has been removed I still need annual pap smears - whatever! - but apparently everything looked normal.

I also discussed all the meds I'm taking, including Lexapro. I've been at the lowest dose (10mg), and we agreed to up it to the next highest dose (20mg). I am certainly still not myself, and if I can get chemical help with that, I'll take it.

Depression is very interesting. It's hard to tell what is "life" (when life involves cancer treatment, bills, and the rest, it's understandable that not everything would be 100% rosy) and what is depression. It's hard to tell how I feel; it's hard to tell if things are in order. I do know that I would generally classify myself as an eternal optimist, as a very happy person, as someone who seeks and finds joy....and I know that it seems a lot harder these days. I find myself having negative thoughts and then the "sane" part of my brain says "whoa! back up, and stop being so negative!" but these thoughts surprise me. I'm used to expecting the best of the world, and when I find my mind moaning and complaining and (worst of all) resigned to the fact that things just suck and there's nothing I can do about it....well, then I know I need help. We'll see if Lexapro has some answers for me. I don't want to be Debbie Downer.

I do wonder if the reason I'm so tired is depression, or something else. I will say that the sleeping aids (Neurontin) seem to be helping, and so maybe I can catch up.

Follow up from last night's post

Here is the post I put on YSC today. I'm struggling with these questions. Anyone have answers for me?
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So there I am, going along my merry way, 2.5 years NED, and these stupid thoughts are still driving me.

This year, my daughter turned 5 (yesterday). I threw her three parties (two down, one to go). First, a family party with family and family friends (a pool party); then, a PEPS party (a group we belong to with 7 families; we met when our kids were newborns and are very close); then, a "girlfriends" party with five of her best friends (that one will have traditional birthday games, a pinata, etc.). It's a bit much - heck, as a kid I didn't count on ONE birthday party, and my kid thinks that three is perfectly normal.

So as I was cleaning up last night after party number two, I was feeling exhausted and wondering why the hell we went so overboard.

The answer struck me with complete clarity: if I won't get to see her 16th birthday party, at least I can throw her 16 parties. If I'm going to die, then I better give her every bit of love and adoration and "special" time possible before I go.

What the hell? I thought I was just having a good time with my child, and suddenly it occurs to me that I'm living my life as if I don't have much time left. When did that start? Am I still leading my life as a cancer victim, and not a survivor?

I really thought I was further along than this. It's so frustrating to find myself really stuck in these thoughts when I thought I was more at peace. Anyone else? How do I move on? What's your advice? Or is anyone struggling like this with me?

I'm two and a half years out. Why is this taking so long? (stamps foot)

Just a cold, but still...

Two years ago at this time I was fighting radiation burns. I was bald from chemo. I was 40 pounds overweight from steroids etc. with chemo. I think it would be fair to say that I was miserable, and that I am so, so glad that I am no longer in that horrible position.

Today, I still have a cold, and it may be turning into a sinus infection. It feels ridiculous to make a big deal out of a cold, when I have endured so much worse, but really, it's not fun to have a cold. It's a molehill, not a mountain, but it's my molehill, and it's a pain.

I still judge just about everything in my life by the cancer yardstick, and this is no exception. A cold is pretty manageable compared to cancer, and it's nothing I can't live with (after all, it doesn't threaten to kill me). I suspect that for the rest of my life, everything will be compared with cancer, for better or for worse, and this fact saddens me (I'm certainly not over it). I wish I could just moan about my cold and accept it for what it is, without the comparison. Why this is difficult for me, I am not certain.

Perhaps the cold is even more frustrating because I fought cancer. Do I have to fight a freakin' cold, too? No fair! I almost laugh that I'm protesting the fairness of a cold, because I don't recall asking "why me?" about cancer (and I even wrote a post about that early on, about "why me" isn't something I think about). I guess I'm a late bloomer in this regard, because my cold is really irritating me. I've had it for a week, it's not getting better, and I'm tired when I have things I ought to be doing. (The Komen work has a huge chunk done but SO much more to do.)

And I want to be a playful mom for Tessa's birthday week. And there are dozens of cupcakes to make....

One day at a time....one day at a time.... It's just a cold. I can deal with this. I've dealt with worse.

Wah.

(But I have been having good times, too, despite my current whininess. Heather watched Tessa today so I could work on Komen, and then we visited and had dinner together. Lovely times. And yesterday's pool party was fabulous. But my sinus headache keeps coming back. Wah.)

Apparently, I need more than little birds

I'm still grouchy.

I don't feel well. My throat is scratchy. I'm tired. My head hurts. WAHHHH.

These are not "real" problems in that it's not life threatening, but they're problems none-the-less. I've decided to scrap the good attitude and mope for a little while instead. Tessa is curled up watching Clifford, happy. I ordered take-out for dinner. It's going to take more than some cute birds in my yard to break me out of my funk.

Hopefully, a good night's sleep and a return to health in the morning will do the trick. Until then, I'm whining.