Crazy

My group therapy is winding down.  I was supposed to be finished, but during my last session I was called to a final meeting with the psychiatrist and unexpectedly couldn't handle it.  I cried my eyes out about my current situation.  I'd realized I'd been exceptionally angry, I guess without knowing what was behind it.  The headaches, the nausea, the fear, the steroid bloating, the lack of control over my existence.  I needed the cry, but the result was the decision that I needed to actually deal with the cancer for once instead of parenting.  Of course my health insurance would only pay for two more visits, and one of those was today.  I did not take advantage of whatever I was supposed to do, I dealt with other parenting issues.  The anger makes parenting difficult, and brain cancer makes parenting difficult, and I'm making some mistakes I don't like. 

I love my daughter.  From the second she was born there was a bond like no other.  I couldn't take my eyes or my fingers off of her.  Everything about her reflected perfection, and for two years I thought she was perfect.  She's not.  Far from it.  And yet I love her and I will until the day I die.  Who knows:  maybe if I didn't worship her we'd have a relationship.  That's part of my crazy, I guess.  I want to know she'll be okay when I'm gone.  No regrets.  And I can't assure it.  It makes me angry.

Waiting makes me crazy, bad traffic makes me crazy, slow people make me crazy.  But Wegman's makes me happy, especially when they have rotisserie chicken soup and my throat is sore.  I want to do lots of things, but without a big giant round face.  I miss looking like me.  And I miss reading.

Having cancer in my brain is so weird.  I feel irrational, but I think I'm scattered just because I'm trying to figure it all out.  I function like normal except for feeling tired and weak.  I'm very much enjoying my rest, but all the same I'm pushing myself to get extra things done.  Especially during this holiday season.  I get a light headache on occasion, and heartburn and nausea if I miss my steroid by even an hour.  The biggest problem is the worry of the something new and the unknown.  Really, I need to lighten up and I just don't know how.

Could you please tell me what I need to do?  I want to get everything perfect and I want to get strong.  How do I do that? 

Journal Day

I'm participating in a focus interview.  I think I mentioned it last week, how it was so encompassing and I ended up panicking about it more than a bit.  As part of the research I have to keep a journal, and I have to videotape certain things in my life that connect me to breast cancer.  Last week I videotaped my book club dinner, because I was having my glass of wine and everyone looked so beautiful and happy.  Today I videotaped myself with Jill in Center City after radiation.  So they could see Jill's beautiful hair, which is so similar to the beautiful hair I miss. 

Now it's time to journal.  My first trip to Hahnemann was on Thursday, where I got a course of action for whole head radiation.  I will have 15 treatments, five days a week, and then be finished and return to Dr. Fox.  On Friday I was fitted for a helmet.  I have to try to get a picture of this thing, it's interesting.  It's like a net that was molded to the front of my head using just warm water.  The techs put tape and measuring devices on it during the treatments.  It's not at all uncomfortable, honestly.  The treatments are quick and have a taste, like raw peas.  I pray that means they're working.  The Hahnemann techs are as sweet as I remember and greet me with hugs.  I think it's Dr. Komarnicky's influence.  She's that sweet.

Just before starting treatment on Monday I had what a 1960s sitcom character would refer to as an episode.  I was working on room parent stuff on Sunday night when the right side of the computer stopped working on my brain.  I believed it was still there, but there was no way I could make my head see it.  Worse, I stubbornly refused to give up my task until the "episode" passed, so I typed half blind, somewhat embarrassed at what mistakes I might have been unable to hide.  For the record, the snowman craft is fine and the soup thing sounds great, whatever it is.  After however much time elapsed the vision disturbance passed and I was left with a lightly piercing pain behind my left eye, not at all unsimilar to some sinus pains.  But somehow more manageable.  The final result was that I was unable to fall asleep that night.  I am still unsure whether I was afraid to fall asleep or chemically disturbed, or what.  I made up for the sleep last night, though.  I was so tired.  I'm tired now, which was/is expected.

I'm still suffering quite a lot of tears about my recent developments.  Despite what I endure I want to LIVE my life, and that means making changes when necessary.  Some of my changes are quite difficult if not impossible to make, and yet I feel so compelled to try I will not give up, I vow.  Things people put off doing for years because things get in the way, and eventually the things will just keep getting in the way and the changes still have to get done.  Maybe if I had time I'd still put off what I need to do, but I feel I lose that luxury a bit more everyday by now.

My birthday is now in less than a month.  I'm turning 46, more than halfway to 50.  My cousin Ted once pointed out that if we Sterbakovs can make it out of our 40s we're good.  So that's my goal!  Thanks, Ted.  Renee is coming to visit for my birthday.  She read my blog last week and bought a plane ticket so she can make me a party.  I'm having a party!  Fun!

Pow

This is turning out to be the most harrowing breast cancer week I've had since the beginning of the recurrence.  I seem to be focused on my issues and limitations at all times, acknowledging some for the first time.  It blows me away to suddenly discover the overpowering changes life has brought to me in the past 18 months.  Without too much attention to consequences, I've changed my entire viewpoint on certain aspects of my life, made subtle and strong determinations of what can be changed and affected, and how.  I'm trying to live within entirely new confines and often have not taken the time or energy to grasp their meanings. 

I've always been bitter about losing my teaching career before having it genuinely start.  I never joined the union, never had the tenure track, never had the same group of kids from September to June.  I never heard a teacher call, "Mrs. Friedman's class, head that way!"  I never had the luxury of buying an item, knowing it would be used for more than a couple months.  I never will.  I won't experience any of that, or the cameraderie, or the mundane of the day to day in the classroom, the assemblies, or more.  It wasn't just a job change for me, it was the recognition of what I'd thought was a calling.  Never getting to discover it is my bitter pill.  Anything else goes from there.  I'll die a wannabee teacher.

Today this is on my mind because I am trying to get social security disability, which marks the permanent end to my career plans.  I spent the afternoon explaining my condition and limitations to the kind attorney.  Hopefully I even made sense as I rationed out vomiting, trying to hide the images that strike my thoughts on such occasions.  It created an epiphany.  I cannot teach.  I cannot rely on my body to carry through the simplest functions reliably.  Several times in the past few months I've sat with my students praying they'd leave so I could high tail it to the bathroom.  On other occasions it was all I could do to pretend to stay awake.  When did I become struck by all of this information without realizing it? 

I realize now that I don't go far to make plans.  I want to go, but I temper my desire with my ability.  Sure I wanted to have Thanksgiving with my family, not spend the evening in the HUP ER with my mom.  I knew better than to count on turkey, right from the start.  I've simply adapted.  Turkey is not a given, not even presented as beautifully as Jill is able and willing.  I want to have a gathering, but I want it to be a well-timed gathering.  I can't plan a big party, certainly not on my own.  But I want one, because one of my greatest decisions in this age of vanishing future is that I don't want everyone showing up for my funeral and I miss them.  If you come by I deserve the hug, wouldn't you say?

Yesterday I met with a researcher for hours as we discussed my life now, how I plan, how I look at breast cancer and treatment options, and so forth.  It was me, talking onto a video.  I don't know how I sounded, but I know the panic attack that followed the hours I spent.  I was typing to my email loop when I felt overcome by the most suffocating feeling of self strangulation.  I am going to die.  Not in a lifetime, but during what should be my lifetime.  I am going to die.  The time I have left is nothing.  What do I do with nothing.  Thank goodness the panic passed.  So now I get to think. Is it nothing.  Does the time count?  My cousin Ben, he never heard of facebook.  I'm so glad I didn't miss facebook.  Will I miss the next big thing?  I watched Philadelphia last weekend.  Tom Hanks died, and then AIDS went away.  He'd still be alive now.  But he missed the big thing.  Steve Jobs felt that he was dying at the precipace of the end of cancer deaths.  He thought he'd either be the first to survive it or the last to die from it.  He sounded retrospective.  He'd made peace.  Look at me, making these changes to my life.  And yet I'm not making any peace.  The truth is, I don't want peace in the end.  Just more life.

How to think

I hope I remember.  I don't quite know what to make of cancer in my brain.  So many billions of connections, which ones are affected by cancer?  Which are affected by meds, and which ones could be attributed to teenagers in the home? 

This is new information, personally handed down today in Room 19, where Dr. Fox sat with a Kenyan med student named Laura, and Lorelei, and Jill and my mom.  It's the result of my MRI from Friday, which hadn't had me worried enough, apparently.  I had been so hungry walking around Penn's campus.  Now the Jimmy John sandwich I'd dragged all over town is waiting in my own refrigerator.  I got my blood tests in my port today, but no tap for chemo.  Chemo will wait. 

First, I pay a visit to Dr. Komarnicky at Hahnemann, my old breast rads onc.  I'll see her on Thursday.  Hopefully I won't require days of prep and I'll begin treatment immediately.  I like Dr. Komarnicky and her staff and I know I'll be in good hands.  It's even better knowing what nightmares are left behind, but that's a luxury I'll miss.  Dr. Fox figures I'll need 10 treatments, but says Dr. Komarnicky could decide on 15.  Rads will make me tired, and the hair loss in those areas will become permanent.  He didn't list any other side effects, though.  When I'm done I go right back to Abraxane, my regular chemo.  And that should be it.

But I don't like people's expressions.  I don't like my own thoughts.  I don't like the worry about my thoughts getting lost in translation, most of all.  What is a person without her own brain operating efficiently?  You get what you get, but with my genetics I'd been confident enough I'd always have what I needed.  Knowing the amount of loss that is possible in there is terrifying. 

I guess I should think about that book.

Wow

Last night I was at the supermarket and the full effect of what happened smacked me in the face.  Hard.  It was like having a flashback, only can it count as a recollection if I'm collecting the information for the first time?  So I couldn't wait to get to group therapy this morning to discuss it, and I ended up taking a whole hour to get it out all the way.  I always seem to have these problems to which nobody else can relate, but the other patients always do their best to empathize.  I'm lucky to have found some very caring people there.

Still, I need an MRI.  I talked to my primary care doctor today, and his only advice is to get that MRI.  Hopefully very soon.  I'm trying not to worry, and the steroids I'm taking are helpful, as usual.  I have an appetite at last.  I ate a full dinner and I feel fine.  If steroids help, can this problem be as bad as I fear?  Everyone is trying to convince me I don't need to worry this much.  Including Esther.  My mother!  If she's not concerned, I could probably relax.  If only.

Life is no less crazy after my health scare.  I still have the same people problems, and I'm giving up hope of ever having them solved.  I can't share these details, but at group therapy I'm trying to learn new skills for coping with them.  I can only change my own actions and reactions.  I can't let the envy of what I'm missing eat me alive.  All the positive experiences I won't get to have, all the love I'm forced to inhibit, it breaks me.  But I'm lucky to have so many wonderful people in my life.  I have to focus on that.  I have Jason and Jonah, after all!  Who could ever want more?  I could.  Sigh.

Update

Last night I couldn't see right again, I had all vision? problems with the dots and the skewed right side.  The mornings are better, but my sinuses feel like they're exploding in my brain.  The ER docs did do a CT scan on my sinuses, but didn't find anything horrible.  This morning I was feeling HORRIBLY sick, when Ken came in with sinus meds and caffeine pills, plus tea and toast.  My head just has a light, dull ache right now.  I'll take it.  I can focus and type, and even see what I'm typing.  Nice change!

I might've been confusing yesterday.  I went to the ER and had CT scans on my head, but they couldn't tell anything because I need MRIs.  I'm still waiting to get those scheduled.  The folks at Penn ER were nicer than any other ER folks I've encountered thus far, and I was grateful.  Heck, right now I'm thrilled just because my head isn't pounding out of my skull.

The CT scan indicated that I might have cancer in my skull again, speaking of skulls.  My guess is they found the healed skull lesions from former bone cancer.  But, just a guess.   I'm scared when I feel sick like this, and even worse, it makes me completely miserable when Jonah sees it.  So I'm also grateful to Donna for sending her son over to get Jonah for play now, and to Joe and Debbie for inviting him later.  On that note, I'm especially grateful Jonah has so many good friends with wonderful parents.  You're all helping me raise him, and even when I can't be a full-time mom you make me feel like one.  Thank you.

I'm not sure what else to do right now when the headache is under control.  My choice would be to talk to Renee, but I'd have to seriously limit that.  Renee and I are not good at limiting talking!  I can't read or play computer games.  I'd love to take a shower, but Ken said he'd clean the bathroom for me.  If I get in there I'll want to clean it.  Especially now that I can handle the cleaner (I had to stop using chlorine cleaners).  There's nothing on tv and Jason is the only kid home.  I don't think he'd want to hang out with me right now, he's still in his room. So, dare I say it, I'm actually a bit ... bored!  I'm never bored. 

What's the Effex?

I think I officially hate Effexor.  At least I hope.  It seems that every time something goes wrong that's the cause.  I also don't think my chemo is working anymore.  And thinking is not dependable because my brain isn't functioning properly and I have a headache.  I don't even know why I'm writing right now, except that I know I worried people this afternoon.

I'm having too many occasions throwing up on the sides of highways. Sorry, I should've issued a warning for that one.  But honestly, I'm a mess and the roadways leading to Philly seem to bear the brunt.  I asked for Facebook prayers because of my neurological issues, but not exactly pleased with the vomiting, either.  For posterity's sake I'm going to list my issues now:

On Wednesday I went to the lovely interfaith service at the synagogue, and it was wonderful like every year.  During the dessert that concluded the service, however, I began seeing odd, colorful spots in front of me, and they danced.  I left the service too late, and by the time I got to the car I needed Ken to help me with my balance.  I fudged a few words and got very upset because I could not get out the sounds I meant to say.  I decided to come home and look up possible ailments on the computer, but when I got here I couldn't operate the computer.  I couldn't find the right side of the keyboard, and apparently I spoke gibberish when I tried to explain that to Ken.  VERY scary.  I thought I was having a stroke, but I also had a horrible headache, and I fell asleep before Ken got me any help.

Yesterday morning I woke up and went to the Thanksgiving football game.  I couldn't walk up the bleachers, but otherwise I was not in terrible shape.  Again, I started having trouble in the afternoon, like with the vomiting on the way to Jill's for dinner.  Instead of enjoying turkey with the trimmings with my family, my mom and I went to Penn's ER for the evening.  We pulled up and they took us immediately.  I didn't wait anywhere, within moments I was whisked into a gown in a single room.  My port was tapped, and I was sent up for head CTs.  They checked my head and my sinuses, which have been bothering me quite a bit. 

My sinuses are fine.  My head, not so great.  I might have cancer on my skull again, which I've had before, but less likely is a chance there is cancer in my brain.  I need an MRI. How would I go from there?  This little bit of time I've spent not remembering the meaning of money one minute or my daughter's age the next has been downright terrorizing.  How can I not drive?  I already haven't been able to drive for two days, what if it continues?

When I got to talk to Dr. Fox this morning I asked, "Are you frowning?"  When he's frowning, I know I have to worry.  No, he said, he wasn't frowning.  He thinks I'm having yet another reaction to the Effexor, but we won't know for sure until I have an MRI.  In the meantime he's prescribed steroids.  I just took the first one.  Suddenly I think I've reached my writing capacity, plus Jonah needs to go to bed, so good night.  I hope you all had a lovely Thanksgiving.

Confusion?

I keep writing posts, whether in my head or on the computer, and then getting rid of them.  I have no subject for tonight, but I continue to have that feeling that I'm schlepping around with something stupid and exhausting.  For now I'll post an update and see if it provides any relief. 

I go to group therapy twice or three times a week.  My health insurance pays for a limited number of visits, so I'm trying to space them out to make this experience last longer.  This week I went on Monday and yesterday.  Working in a group is so extraordinary.  If I don't want to focus on myself, someone else needs that focus.  I think I'm realizing for the first time that I'm in a heap of doo doo.  I'd just been figuring these are my problems, like everyone has problems.  But my problems really suck, and there isn't easy advice.  It made me feel sorry for myself for a couple days.  I hope I'm past that now.  I thought it would be no big deal to talk in group, because, after all, I write everything in a blog.  However, it feels different when people are hearing the whole story at once and I talk mostly about the part that most affects me.  I'm getting advice on what I need, and I find the people to be comforting.  I also may like that we're all somehow damaged, and that slowly but surely, people are healing.  This place is terrific. 

Cancer is bugging me.  My chemo break is over already.  I had a treatment yesterday, and it seemed to take forever.  Not feeling wonderful today, and I'm teaching kindergarten.  I feel like my energy continues to decrease, and I don't know why.  People ask, "How are you?" and I really have no idea.  I answer with a noncommittal, "Okay."  Not satisfying to anyone.  People continue to be lovely, just taking their anger out on politics, it seems.  I'm definitely angry, and I can't identify that, either.  But watch out, because I can be pretty moody, and also downright mean.  I delete the posts, but the sentiments float in the stratosphere.  Maybe I even mean them, but I certainly don't mean them to be public ... or phrased so harshly ... or whatever.

I'm so tired.  And I still haven't discovered why I'm writing this blog entry.  Jonah wants me to tuck him in.  I guess I'll give this a rest for tonight.  And me.

A break?

Although I did not leave my previous blog post up on here, I still have it.  If you want to read it, drop me a line.  What I will say is that despite my worries about cancer and money and anything else in the world, it all pales in comparison to the constant trauma I feel about something else entirely.  I felt like it wouldn't be fair to record my blog while omitting something so pivotal, but it is enough that you know the something pivotal is there.

That said, I was so nervous when I headed to Penn yesterday I packed a bag.  I'd been vomiting buckets since Sunday afternoon and under the circumstances of the previous hospital stay I wasn't at all certain I'd be heading home at the end of chemo.  Depression is quite awful, in and of itself.  I kept crying that I was sick of crying and wanted to feel like me again.  I feel so small when my stomach is empty, it's like I'm disappearing altogether.  My weight was only at the bottom of the same 5 or 6 pounds as usual, but I felt half gone. 

What a relief it was to step off the elevator at the third floor with my dad, even though it didn't abate my tears in any way.  The nurses guided me around quickly and sat to talk with me until Loreli could join me.  She's been going through this with me since the beginning and it was a relief to not have to explain anything at all.  She just gently said she and Dr. Fox would be able to help me and I wouldn't be like this forever.  When Dr. Fox came in, he actually smirked a bit for a second.  If I didn't know him well that would've been upsetting, but instead it got me to smile for the first time in days.  It was almost like a smile of, "Good, you're still here, we'll fix this."  Then he spoke to me much more seriously, and soon determined the vomiting was the result of Effexor withdrawal.  You can't stop taking Effexor because you don't feel like eating, apparently.  The next day, my stomach feels completely calm. I'll go eat breakfast when I'm done writing this, and I'm even subbing a half day today.

As for the depression, Dr. Fox noted that having Stage IV cancer is a huge stressor, and then I got a bunch of other serious stressors dumped on top of that, and he doesn't know what it would take for anyone to break under those circumstances.  Also, he said that being on chemotherapy for 16 consecutive months may have made me more susceptible to break by affecting my brain or mind in a certain way.  So for now I'm on a closely monitored rest from chemo.  I don't have to get checked next week, but I'll go in for tests in two weeks to see if I need to start up again.  I feel a bit confident about this.  At this point I'm still really struggling with the giant elephant not on the blog, but having one stressor taken off, having Dr. Fox claim it as his and take it away from me, drains away some of the pressure. 

In addition to that, despite the cancer (no psych places want to deal with cancer patients), Dr. Fox got me into an excellent outpatient facility for depression, so I'll be going there a few afternoons a week, starting Thursday.  It looks like this blog will change shape a bit as I deal with cancer and depression simultaneously, and I'll keep you up to date on how it's going.

Changed my mind

My dad is here.  He said I share too much in my blog that is not about cancer, and I'm sure he's correct.  I feel bad not sharing exactly what is going on when I know you all just want to help, so this is what I will say:  This is not about cancer or about money or about unhappy surprises.  After a week in the hospital I've learned that all of our problems are important no matter what they are, so maybe it doesn't have to matter to you what is ultimately wrong in my life.  I know in my heart that I am in your heart, and I am ever grateful for that.  If you've already read my longer blog post today that's okay.  Just be respectful of what you now know, and I trust you.

Upstairs

It's time to break the fast that never was.  I'm not allowed to fast, and when my family appeared it turned out they hadn't, either.  Lori is breastfeeding, and Jill is training too hard for her Ironman triathlon, which is in three weeks.  Ken isn't observant this year, and my big kids are simply not observant.  Jonah is 9.  My mother is still not doing so hot.

I did attend the morning service today, during which I spent much time reflecting about my synagogue and my community.  I've always loved my town.  I've always said I wouldn't want to live anywhere else.  This morning I reconfirmed that I am in the perfect place.  A judgment free synagogue, an integrated community where anyone is welcome.  Is it just my perspective, or is it real?  It's always been my perspective, so I will not attribute it to the cancer.  I honestly think it's real.  So wonderful ...

But here I am, upstairs.  Everyone else is downstairs.  This never happens anymore.  I'm feeling nauseous and don't trust myself to look at food, let alone eat.  I hear the happy conversation in the dining room.  My brother-in-law's laugh, Jonah's opinions, Ken's take on the new tv season, an occasional gurgle from Jack.  I want to join them.  Maybe once I write this blog I'll feel well enough.  Maybe even sooner, and I'll finish the blog later.

I'm concerned.  Why am I suddenly not feeling well?  Why is my hair starting to grow?  After my Xeloda experience, my mind immediately takes me to one conclusion:  the chemo has stopped working.  Why is my hair starting to grow?  It makes no sense.  My third and final treatment of the current cycle was on Monday, so I don't even return to Penn for nearly two weeks.  Then I'll have my tumor marker test and wait yet another week for the result.  Do you feel the suspense as well? 

I don't take feeling well for granted.  I know it and my whole life can turn on a dime, on a mosquito bite.  It's terrifying if I think about it, so I try mightily not to think about it.  But the feeling creeps in, on a day when I'm thinking G-d is sitting up there somewhere deciding my fate for the next year and I've got so much I want to do.  I think about it when yet another celebrity has succumbed to this.  How did they die?  Cancer, what else.  I think about the natural conclusion to my story, and who will write it.  If I write a book, it will be the inevitable postscript.  Someone has to report it on my blog, it will be my final Facebook status update.  Some might feel relieved, the same way they feel relieved when they finish a book, regardless of how it ended. 

This is not my end, obviously.  It's just on my mind. And maybe I can eat, which would be a much better idea than sitting up here basking in my own morbidity.  So L'Shana Tova, let's eat. 

A Long and Winding Road

I give up.  I can’t seem to find time to write my blog, so I brought it with me.  Here I am, in the 3^rd floor waiting room of the Rena Rowan Breast Center at the Abramson Cancer Center at the Perelman Center for Advanced Medicine Building of the University of Pennsylvania Health Care System, with my laptop on my lap and my ubiquitous water bottle at my side, waiting to get that finger stick and see Loreli.  I’m alone, even though I’m getting tumor marker results today.  You’ll be the first to hear the new number.  My little girl friend is wearing an adorable glittery Elmo top today, and her mommy seems to be in good spirits, tired.  Her daddy is the nicest guy, who always asks about my mom and Allison after having met them once.

Bear with me, because in the past five days I’ve probably had 5 to 7 blog entries running through my brain, trying to escape, and I try to hold them.  It’s like … oh wait … okay, now I’m typing with a puffy band-aid on my middle finger after the little blood draw (they just check my white blood count to make sure I’m healthy enough for chemo).  Where was I?  Oh.  It’s like I’m trying to keep track of my little Elmo friend in a playground.

Now I’m waiting for Loreli.  What do you think, up or down?  Eek, scary waiting!  I’ll keep the computer lid open when she tells me and record the number immediately.  I don’t like being alone to get the tumor marker result, but it’s unavoidable today.  I’ll explain later.

Tumor markers!  From 47.5 last month to 42 today.  Great news, especially considering I was sure they’d go the other way with all the stress I’ve been experiencing!  And now Loreli knows she’s in my blog.  I didn’t even see Dr. Fox today, not sure if he’s here.

These are the musings I need to share:

·         Gratitude

·         Blessings

·         Drama

·         Household management

·         Faith

On Gratitude

Isn’t that a Thoreau title?  Well, this entry needs a powerful title, because it’s the most important of what I have to say.

This is my life:  I get cancer.  People bring food, give me hugs, make me feel better.  Barb calls a meeting and starts Team Michelle to make sure I get what I need.  Barb organizes a group of people to come clean my house.  My mom, Jill, and Ken take me to chemo. 

Ken loses his job.  Libby and Charlie (my dad and his wife) fly me and Jonah to Florida so I can calm down and get a grip.  Libby arranges a meeting with a recruiter.  She, Charlie, and Barb organize a fundraising campaign for me because I’m worried sick about health insurance.  In the first week people donate thousands of dollars and the number continues to grow. 

During the band parents’ preview day, Allison rushes out and crashes the car (she doesn’t have a scratch on her).  The parents step up, make sure my boys get home safely, and bring us all the leftover food. 

I have a choice.  I could dwell on the cancer, the financial worries, my daughter’s bad driving.  Or I can look at the sentences that follow.  People bring food, get me what I need.  Donate money for health care, make sure my boys are safe.

Look at what people do, look at what so many of you have done.  In so many ways, as I sit in this suite with Abraxane flowing into my veins, I know it’s not so much what’s in this prestigious building that is saving my life.  It’s what’s in your hearts.

And so even though life is completely unstable at this time, and something is going to happen next because something always happens next, I’m smiling.  I’m so thankful for what you have done and what you continue to do.  I’m not a special person.  I’m a mom, a wife, a person who hoped to be a teacher.  I’m suburban, and I stand there chatting in the market even though my kids want to go home.  I have a minivan with a marching band magnet and an elementary school magnet.  I’m clumsy and easily distracted.  I don’t like to cook and I’m a fussy eater.  And I’m deserving of all I’ve received because you deem it so.  What I’ve done well is to choose to be among the greatest community. 

I wanted to write individual thank you notes.  I gathered my favorite pen and a bunch of cards and envelopes, and settled in to work.  And then I realized how many people show up as anonymous on the donation list.  And then I saw that there are people I don’t know, so how would I send thank you notes to them?  Finally, people who’ve given other than financially also deserve to be thanked.  Most of my world should be thanked.  I appreciate it all!  Thank you, then, for meaning the world.

 

Blessings

Last week I counted my blessings and found that I had three just for the week.  Then I realized it was 4.  It was an extremely busy week with days spent running from school to doctors to baseball to back to school night, and more.  (Signing off from the chemo suite, will continue at home.)  I’m home and I took off the puffy band-aid and the hospital bracelet … In the midst of the rushing and driving and waiting, I experienced moments I hope to never forget.

The first blessing was a phone call from my friend’s husband.  He’s an attorney, specializing in social security disability, and he called in the middle of the day to give me advice.  Thanks to him I knew exactly how to fill out the forms I needed, and what to write.  He knows me through his wife and neighbors, and he went out of his way to offer his time and expertise.  It was so sweet of him.

The second was an email from someone who was an acquaintance, whom I haven’t seen in years.  He sent me probably the nicest email I’ve ever received and asked to be my friend.  It was so sweet, it made me tear up.  It reminded me of my friend/Ken’s cousin Rich, who often makes me feel the same way.  To just go out of the way like that and be so sincere.

The third happened at the Friday night Lenape football game.  I’d been at Jonah’s baseball game and hadn’t had time to change my clothes, or even remember that I might want to change.  So I was wearing my least favorite scarf.  I’d forgotten that all of last year’s 8^th graders now go to Lenape until the minute I walked into the stadium and started seeing friends.  They’d never seen me without hair before, but they still called greetings to me.  I covered study hall for 5 weeks in the spring, and three boys were especially memorable.  They were goofballs, and I had to write up one of them a few times, but they always made me laugh.  At the game on Friday two of the boys were together, and they ran down from the stands to give me a hug. 

I don’t want to write the last blessing, because I think the person who provided it would be bashful about my repeating it.  Suffice to say it was an unexpected compliment from an unexpected source, and it was so sweet.

The truth is that I have blessings all the time.  Maybe I didn’t notice them before as much as I should’ve, or maybe I’m just more powerfully blessed now.  At any rate, it makes life so much sweeter to be blessed.

 

Drama

Soap operas were so fun and unrealistic.  Who has so much drama?  Lately, it seems, I do.  I’m not a person who lives for drama.  Not at all.  I far prefer stability, and I’d love to be boring.  Don’t get me wrong, I’d still talk and talk, but it would be mundane.  “Oh, yes, well Allison only likes Skippy creamy peanut butter.”  “Rudy liked to wander the neighborhood, but Molly is content to stay home.”  Stuff like that. 

Drama gives me a hard little knot that sits in my chest and occasionally bursts into flame.  It makes my head feel like it’s spinning while my ears try to stop it.  It causes a knife to twist in my liver.  Every time I have a new drama I react the same way.  I flush, and then I shut down for a moment.  I need to sit and process it.  And then I have at least one soaking, Spongebob worthy cry.  Even if the drama is short-lived, like the worry with my mom when she almost died during her surgery, the effects linger.  For at least a week after that bad day, I walked around feeling a bit shell-shocked.  Even after my mom was home and nervously watching me clean her kitchen, I still had that feeling.  Now that I’m writing out my feelings I wonder if I’ll stop having the same reactions.

I don’t want the drama.  I want to have a job, and for Ken to have a job.  I want to drive the same commute every day, and do the same type of work.  I want Ken to like his job and come home in a good mood.  I want the kids to go to school, come home, do homework, participate in activities and go out with friends.  I want to annoy the kids by talking too long to friends I run into in the supermarket.  I want to gossip about people with drama.  Or watch a soap opera. 

 How do I get rid of the drama?  Maybe I need an exorcist.

 

Household Management

Household management?  Really?  What on earth did I want to say about that?  I change my mind.

Faith

How could I not write about faith on Rosh Hashanah, with the musical prayers from this morning’s service on an endless loop in my brain.  I think it’s natural for people in my position to ponder faith.  Many people rely on faith to help them get through the bad days, to help them believe better days are ahead.  Some people turn their backs on their faith, bitterly blaming a deity for robbing them of what they deserved.  I don’t think of faith like that.  I don’t rely on it or blame it, I just have it. 

For the second year in a row, I’ve accidentally brought home the High Holy Day prayer book. Last year I returned it immediately, but I think this time it will remain in my safe keeping until Yom Kippur.  This is the kind of faith I have (quoting the book):

 “Blessed is the grace that crowns the sky with stars, and keeps the planets on their ways; the law that turns our night to day, and fills the eye with light; the love that keeps us whole, and day by day sustains us.” 

 

I have faith that the stars will keep twinkling, that people will largely wake up in the morning and go to sleep at night, that love keeps us whole, that the conservatives are wasting their breath trying to sway the liberals and vice versa.  I have faith that people change and grow by generation, and that new digital devices will wow us in years to come, even without the magic of Steve Jobs. 

I was thinking more about faith and hadn’t gotten to my point, but honestly this is way too much reflecting for one day.  I promise I won’t ever let my blog get to this point again.  I’ll keep up better. 

 

Great Expectations

As a child I was unsure how my future would look, but I was determined that I would have a certain lifestyle, and that I would probably find that lifestyle in Los Angeles.  My aims all led away from materialism toward a more holistic, almost hippie society.  My home would be comfortable, and certainly not so big I would want someone else to clean it.  My friends would be earthy and smart, never noticing what I wore as long as I wore something.  I would drive a VW bug, preferably a convertible.  I would teach ESL to native Spanish speakers, sitting under a courtyard tree on nice spring days.  And I would have children who questioned me about the world and rolled their eyes at me as teens.  I didn't care whether or not there was a husband in the picture, because the key idea was that I was going to be independent.  Money didn't factor in at all, because I didn't think I would need much for my lifestyle.  In my vision, everyone was well adjusted and comfortable, and we always had enough of everything.

So as a young adult I promptly moved to Los Angeles, where reality quickly slapped me in the face.  Los Angeles was hardly the utopia I expected.  It was expensive, mostly dirty, more materialistic than most places on earth, and you couldn't even expect to see a blue sky.  To top it off, I hadn't become a teacher and wouldn't in LA, where teachers routinely moonlighted at supermarkets because they couldn't survive on their incomes.  It was important to have a super comfortable car, because that's where people in LA live their lives, conduct their business, drink their coffee.  A bug wouldn't cut it.  I did make good friends who were smart and earthy, who didn't care what I wore, but in the long run I got married and decided my husband and I should raise kids on the East Coast, where education seemed to be a bigger priority.

True to myself, I did not even consider financial security when I married Ken, and our salaries were about the same.  We didn't know we would need more until Allison was born and I was too enamored to return to a job that kept me away from home 12 hours a day.  So I worked at Macy's, threw newspapers, and started mystery shopping.  I learned that one way or another I could add to our family income and make sure we would stay above water.  I moved farther from the lifestyle I had wanted as I got entrenched in parenting and started appreciating nice things.  Ken's income more than doubled with a new job, and we were able to save enough to buy a bigger house, secure in the knowledge that we could afford it. 

We did great for quite awhile, until Ken took another new job with a slightly lower starting salary at a more secure company.  He was promised the world, so we waited for the world.  I was in grad school and assumed I'd soon have a full-time teaching job, so if we needed credit cards to pay for things sometimes it would be okay.  But in nearly five years Ken never got a raise as prices for everything rose.  I not only never got a full-time teaching job with benefits, I became unable to work full-time.  Life became a giant mess and we couldn't get caught up.  Last year I sighed and spent the last of our savings on some medical bill I can't even remember.  And then two weeks ago Ken unexpectedly lost his job. 

We're looking at all of our options as Ken searches furiously for work.  It seems certain we'll have to sell our house, even though the market isn't good here.  I'm finally applying for social security disability and other aid.  I hadn't wanted to do that when I felt I could still be self-sufficient, but I'll never be able to handle a full-time job unless I somehow make it to remission and don't need further treatments.  So  though it breaks my heart, I'm left to count on our biggest blessing in this life, a blessing that generally makes up for everything else: friends.  My father created a fundraising web site for me so that we will be able to pay for COBRA health insurance.  Without the COBRA I don't get treatment and would probably last about 6 painful months.  I find it embarrassing to suddenly not be self sufficient, but exceptionally grateful that in just over one day enough has been collected to pay for more than one month of COBRA.  Friends, friends of friends, family, friends of family, all contributing to save me, to save my family.  It's beyond overwhelming.  Thank G-d for your generosity and love.  Thank G-d for everyday I have in the world with you lovely people beside me.  I had gotten to the point at which I wanted to give up and let my family live off my life insurance, and now I want to fight for my life and my productivity.  You're keeping me here, and I'm going to somehow make it worth it. 

August was horrible, but in the end I'm lucky anyway.  Here is a link to the fundraising page:  https://fundrazr.com/campaigns/6MBPa?srid=2162027f2dae4a1b82c59ba6bb992829#.UETZm0iu5X4.facebook

What next.

A year ago I posted that I didn't want to complain.  So what can I say?  This August has been rather difficult.  Still opinion.  Shoot, I can't do it.

I got good news on the cancer front:  my tumor markers dipped to an all-time low of 47.5.  I think that will remain the low, because my stress level keeps increasing, and I know how bad it is for me.  I'm having nerve pain, stomach aches, nose bleeds, and back pain. 

Humans must be tested, and this month I am continually tested.  I feel like I'm failing.  I am failing.  Falling, failing.  There's a reason the two words sound and look so similar.  I have never suffered from depression, and now I'm filled with self pity and hopelessness.  I think how selfish that is of me, and that adds another dimension of horror.  When I think things can't get worse, they get worse.  I'm worried sick about Jonah, just because he's the only one so far who remains unscathed. 

For most people, the answer is to make lifestyle changes.  That is not an option for me at this point.  I'm limited in what I can do to have any positive effect on this situation, and truthfully I'm too paralyzed half the time to even consider making an effort.  What is easy for me is to make a decision to give up.  All I have to do is give up my treatment, stop paying the stupid copays, and sometime soon after I'll just wither away, stop taking up space and worrying others.  It's really the next logical step, considering it seems the world is trying its best to kick me out of it.

I do think of what I still have:  people.  Barb is checking on me constantly.  Charlie and Libby have talked me into visiting them in Florida next week.  Other friends and family members are contacting me more than usual.  My boys.  I have my boys.  I never understood before how people could willingly leave behind those they love, those who need them.  Now I understand.  It's not a matter of their need, because it's possible to become convinced that everyone on earth will be better off without the horrible negativity I bring into a room.

Well, I'm not going anywhere.  I'm not even scheduled to have another chemo treatment until September 10.  By then maybe some miracles will occur.  Who knows. 

Moms

The first time I ever heard the word metastisis was regarding my beloved Aunt Bernie, and she died within two years, in April 1981.  I visited her in the hospital at the end of her life (she was 45, like I am now).  That was frightening, but not as frightening as sitting behind her youngest son, my cousin Ted, at the funeral.  Ted is my age, and we were both 14 that day.  I stared at the back of his head the whole service, wondering what was he going to do without a mom.  I was a teenage girl, fiercely independent, but on that day I knew I needed my mom.  I knew even more he needed his.  Aunt Bernie was cool, and smart, and brave (not cancer brave -- raising 3 boys brave).  He wasn't just losing his mom, either, as far as I was concerned.  He was losing one of the best words in the English language from his vocabulary.  I mouthed the word "mom" repeatedly in the car between the service and the shiva.

Last week at summer school, the class conversation in English turned to me, for some reason.  Jason fielded questions on how it feels to have a sick mom, all the while looking nervously at Alex (name changed), whose mom died a few years ago.  Alex didn't get involved in that conversation.  I suppose he doesn't get involved in many, because he's failing summer school.

I've been thinking a lot about moms in the past few days.  One of my kids says I'm not much of a mom, that I ought to consider acting like one.  So I tried that, and now that child is grounded.  My other two children think I'm the greatest mom in the universe, which I'm positive I'm not.  I fall somewhere in the middle of my kids' opinions.  I wish my naysayer would be more open to being parented, but I also wish the other two would be less idealistic.

I hope my own mom forgets to check this blog today, because I don't want to hear her commentary on this.  But ... the other day I had a horrible nightmare in which she died.  I honestly don't know what the heck I'd do without her.  The woman can be batty, but there she is on my caller id.  I don't know which Esther I'll find when I answer the phone, but any of them is still my mom.  Do we all sometimes find our moms exasperating if we're lucky enough to still have them?  Can an adult child decide to cast aside a mom for good?  Can a person really reach the point that the mom is so toxic, the relationship is over?  I couldn't imagine it.

My mom is having surgery tomorrow.  I'm not talking about the subject, simply because I'm sick of hearing about it.  She went with me to Penn yesterday, and by the end of our stay Dr. Fox and Loreli knew about it, plus two nurses and another patient.  I am pretty sure she'll be fine once she recovers, and I look forward to that.  What will she talk about then?  Never mind, I already know.  Sigh.

I'm not past the point of planning for my own demise, even though I'm no longer anticipating it.  All of my thoughts turn to my kids, when I think of it.  It sucks that I'll have to go, but it'll suck much more for Allison, Jason, and Jonah.  Jonah says, "Hey Mom?" before every sentence he speaks to me.  Even if we're in the middle of a conversation, every sentence will start that way.  Yesterday I helped the guidance counselor set up Jason's 504 plan.  I put in provisions that deal directly with me.  For example, if he experiences an anxiety attack, the nurse needs to reach me before trying anything else to deal with it.  Allison and I are planning her college education together.  We're going on the tours, discussing the programs, making discoveries together.  We're together in this whole process, and next year when she leaves, she won't have planned it all alone.  I'm not saying Ken couldn't be the one to help any of the kids, but it would be difficult.  He's got his own job as a parent, and I'm worried he'll be lost enough without me that he'll aimlessly wander through parenting fields for awhile.

Anyway, having said all that, I got my CT scan results yesterday.  The cancer in my liver continues to shrink, but it's not gone.  Dr. Fox measures just a few of the many tumors, because most are fuzzy.  One of the tumors he measures has shrunk from 1.5 cm in April to 0.92 cm now.  Another shrunk less dramatically, from 1.6 cm to 1.25 cm.  He says it's good news, but to me, no cancer in my liver would be far better news.  Next Monday I'll get my tumor marker results.  While waiting for Dr. Fox I got into a conversation with another patient.  A patient who has been living with bone mets for 10 years, who was first diagnosed with breast cancer almost 20 years ago.  Very cool woman, with two grownup children.  I'm so glad she's still here!  I know her kids are, too.  She says her daughter mothers her too much ...

Magic 8 Ball

I'm killing time here on my blog while I wait to head to Penn for a CT scan.  It was an abdominal CT scan that originally discovered cancer's attack on my liver on June 12, 2011, but for whatever reason my subsequent scans have been a bit cloudy.  Dr. Fox sort of insisted on this one, even though he admitted he'll take the results with a grain of salt.  My last two scans were in January and April.  Both of those were identical, showing only a trace amount of cancer in my liver.  I can tell you I expect today's result to be about the same.  Cancer in my liver makes me nauseous, and I am not nauseous.  My bilirubin numbers have been normal for nearly a year.  So do I still have cancer in my liver?  Hand me a Magic 8 Ball, it would probably be as effective, and $200 copay less, to ask it rather than endure that horrible white stuff I have to drink for 45 minutes.  Dr. Fox insists on occasional CT scans, but said I can put off the next one until 2013 if this one is fine.  I'm cranky because I'm thirsty and about to have my port accessed for the second time since Monday, and I'm thirsty, and I don't feel like driving to Penn again, and I'm thirsty, and not thrilled to be exposed to more radiation, and I'm thirsty.  But I trust my oncologist with everything that is in me, and if he says CT scan, I'll (choke) have it.  Followed by a couple quarts of water.  And later, my reward:  the glass of wine I'm allowed to have at my book club meeting tonight!

To update, I did ask Fox on Monday what would happen if I go into remission.  There are three possible answers, and I think for the most part I would have the choice to make.  First, I could choose to stay on the chemo, knowing it works in keeping the cancer away.  Second, I could choose to take a break from treatment of any kind.  Third, I could choose to take a hormonal pill.  Because I clearly didn't react well to Tamoxifen, I would have to go on a postmenopausal pill.  Which means I would need to be postmenopausal.  Dr. Fox can put me through menopause with a few months' worth of shots, apparently!  Yes, this is the way to go.  So if I hit remission, I'll have bionic menopause.  Should be interesting!

I have nothing else to report.  Oh yes, yesterday I took Jason to Hair Cuttery and now his hair is black, with the exception of a very few strands of blue left in the front.  It looks 100% better.  And he had "midterms" in summer school, got As in both classes.  Go Jason!  He's planning out his blog entry.

Ugh

I deleted my post about health insurance.  I wasn't accurate in one part of it, and I complained more than I should've.  I'd gotten all riled up about an anti-Obamacare post on Facebook and responded here instead of there.  Yes, we're concerned about health insurance costs, and we're hardly alone in that.  But I got too personal, and it really wasn't accurate when I said Jason doesn't eat some days.  It was partly true, but it's mostly because I didn't have money for him to take this day or that, and he didn't want pb&j or whatever we had on hand to pack.  I'm not spending $60 a month on school lunches because that's expensive, but of course we can pack lunches much more cost effectively if he'll actually eat what we have!  So I'm sorry I got a bit out of hand on that one.  This blog is about the emotional effects of cancer, and from now on I'll stick with the subject.  I don't like that I wasn't accurate, it minimizes the rest of this blog, in my opinion, where I only write exactly the way it is.

I still have cancer?

I suppose I ought to update about my progress every so often, or are you all Facebook friends?

Abraxane is a wonderful chemo, other than that hair loss stuff.  I haven't felt sick from it at all, and I'm on my third 3-week cycle (I go once a week for 3 weeks, then get a week off).  My resistence to illness is either quite low, or the monthly exgeva shot I get for my bones upsets my stomach.  I was violently ill for 24 hours the day after the first treatment of cycle two, and I'm not feeling well today.  The only common bond is the shot, which, ow, it hurts anyway! 

As I did mention, I had to get off the Xeloda because it stopped working.  My tumor markers increased nearly 100 points over a few months (from 55 to 138), I got a new lump, inexplicable bumps on my head, blinding nerve pain in my legs, and some other issues I probably jotted down somewhere.  Dr. Fox was optimistic about the Abraxane working because I generally respond well to chemo, and most people respond well to this one.

I get my tumor markers checked at the first treatment of every cycle, and get the results at the second treatment.  That second week is when someone needs to be with me at Penn, so I don't accidentally ram my car into that stupid pole again (what a dumb place for a pole, anyway).  After the first cycle, my markers dropped from 138 to 96!  Great news!  This month, my markers are down to, drumroll, 65!  Woohoo!  Can I please go into remission?  Please, please, pretty please?

Not only that, but I still haven't taken any Advil at all.  That little lump is gone, as well as the painful bumps on my head.  Simply put, I don't feel like a cancer patient. I do miss the tastebuds on my tongue, but whatever (side effect to most chemos).  I told Dr. Fox I'm ready to have a vacation from cancer and he laughed.  I have to find out what that means.  What happens if my tumor markers drop to nothing and a CT scan shows no cancer at all in my liver?  What happens if the Abraxane kicks out every one of the bad cells?  Can I go off chemo?  Will I not need cancer treatment?  Will I miss hearing about several of Tamica's weekends (I love her, she's the phlebotomist)?  Will I not see the fashion patient with the long blond wig and the platform heels?  Can I skip those nasty $50 copays three times a month?  Man, what I wouldn't give to find out!  I came so close once before, should I even breathe this here? 

NED means no evidence of disease.  If I can ever announce that I have NED, you'll hear it.  You'll all hear it!  Whew.  Deep breath.  Slow down, Me.  This is what feeling good does to a cancer patient.

Side Effects

I rarely discuss my kids here, because my older two generally guard their privacy to a degree I'll never comprehend, having been born without any semblance of a privacy gene.  Sometimes I admire my kids for this, and other times I wish they'd open up.  Earlier this year Jason, who turned 15 in June, was forced to turn his guts inside out, and let me tell you, the result was quite an explosion.  He's actually asked me to write about his past year, and I've been putting it off for a month while I made certain he honestly wants me to do this.  He does.  He wants me to write it, and he doesn't want an opportunity to read it before I publish it.  So Jason, I hope I can accomplish whatever is it you want from this post.  I also hope you'll respond by giving me the great honor of guest posting on this blog.  Also, Jason, I'm going to leave out Daddy, Allison, and Jonah in this post as much as possible.

Jason is a fascinating person on many levels.  He's always been extremely verbal and mature.  As a small child he was exceptionally serious, and would yell at us if we laughed at something funny he said or did.  He was easily frustrated, and wouldn't try anything new until he was confident he already knew how to do it.  One day I was keeping track of how many words he could say, getting close to that 100-word mark, and the next day he was speaking in full sentences using four-syllable words (his favorite was "appropriate" or in his case "apopiate").  Where Allison needed repeated reminders and often didn't listen to me anyway, Jason only needed me to speak softly to him once.  He was so sensitive, anything more than that would result in Spongebob-style tears, which he'd present to us anyway about 8 times a day throughout his childhood.  His first word was, "Noway!"  I called him Eeyore.

On the other hand, at the age of 6 he got up on a stage for the first time to perform a monologue.  I held my breath, figuring he'd probably memorized it nicely and would do an adequate job, as most of the other children had done.  Instead, Jason became a different person, acting out the monologue with expression and body language and his innate humor that normally caused me to surpress laughter.  Wild applause, and he liked it!  He still has this alterego that enjoys being on a stage.  Maybe that's how he can allow me to write this.  Maybe that's how we ended up in this situation in the first place.  I have an artistic, dramatic Eeyore going through puberty with uncertainty about the existence of his mother's future.

Jason's tumultuous teen years actually began when he was 12 and had his great growth spurt.  He grew his hair long and wore it completely covering his eyes.  To soothe himself, he took to constantly smoothing the hair down over his eyes and face.  I barely saw the kid for 7 months, even though we spent time together everyday.  I forced him to cut his hair short before his aunt's wedding and his own bar mitzvah, and he cried silently on the way home from Silver Scissors, grew the hair back at the first opportunity.  He became enamored of studying the human psyche, and as you'd guess, didn't relate to middle school boys at all.  He had a formspring page where some kids would tell him they were in love with him, and some kids would call him a fag.  Somehow they discovered he liked a girl, and tried to figure out who it was.  They know now, because Laura has been his girlfriend for nearly 14 months.

A couple times, Jason told me he'd tried to kill himself.  I'd figured all along we'd experience something like that, and didn't take him seriously enough.  How, as a parent, did I not take this seriously?  This was before the cancer resurfaced, so what could've been more important?  My great failure as a mother, and if something had happened to him it would've been my fault.  I still know that if something happens to him it will be my fault.

Around the time my recurrence was announced, Jason started having panic attacks.  I didn't know what to do or where to turn, and I was sick and didn't do enough to figure it out.  This was the same time in my life that I was sure I was dying, failed to pay bills, forgot to register my car, etc.  I spent as much time with Jason as I could, but he ended up feeling responsible for taking care of me.  He came to me, in my room, and offered to get me ginger ale or diet soda.  He introduced me to his favorite tv shows, and sometimes I stayed awake long enough to watch them.  He came with me to my first grade classroom and helped me set it up.  We experienced that earthquake together there.  He has always been there for me, and I never made a single phone call to find out what to do about panic attacks that were becoming more frequent and forceful.  You say I'm brave, and a hero, and this is why I tell you I am not.  I never made ONE SINGLE PHONE CALL for my own son in pain because I was so wrapped up in myself.

So he started high school last September and found himself unequipped to succeed.  He wasn't feeling well, he didn't understand algebra, and his science teacher was a miserable woman who shouldn't be teaching.  Jason was depressed, and school was hard.  He decided it didn't matter.  He weakly attempted suicide again, and stopped doing his school work altogether.  His Bs and Cs from the first marking period slipped quietly and effortlessly to Fs.  He nearly passed out in health class when the teacher brought in cancerous organs.  Testicular cancer landed him in the nurse's office and he came home.  I did take him to the pediatrician that night and got him a couple scripts.  He promptly took too many pills and landed in the principal's office, quite drugged.  We got the dosage straight and then he took too many pills, hoping to relieve the pain for once and for all.  That didn't work and finally, on January 17, he had a breakdown.

It was an ordinary night.  We were watching tv in my room when Jonah came in to take a shower.  He, being Jonah, put on a naked dance show for us before retreating into the bathroom (he, like me, does not value privacy).  I laughed, and then I saw Jason was crying.  Then screaming, and trying to pull out his hair.  Ken and I could not calm him at all, and so I called Civia, who is the most soothing person I know.  She got him to say a couple words, but I couldn't understand.  Ken took him to the hospital crisis center and I waited up all night, just as they waited up all night.  Jason was admitted, and spent a week there.  Ken and I were allowed to visit from 6-7 pm each night, that was it.  Jason needed the hospital, and the snack closet, and the kids, and the staff, and this one troubled girl who had no visitors, ever.  The whole thing was a break from his normal life, and something about the therapy made him understand his anger.  When we went to visit we represented his normal life and his anger, and he yelled at us the entire week.  He'd never blamed us or yelled at us.  It was progress.  They got his meds straight, and after a week they sent him home with a plan. 

Following the plan, I took him to a 3-hour group therapy session at the hospital the night after his discharge.  He lasted 10 minutes there before calling me to come get him.  The other kids were bad, bad juvies there by court order, and Jason was terrified.  He would never speak in front of them.  I talked to the coordinator, who pointed out that any group anywhere might be the same.  So I switched Jason straight to individual therapy.  Thank goodness, his first therapist has been the only one we've needed.  She's perfect for Jason, soft-spoken, soothing, firm when necessary.  Jason is always eager to see her.  Sometimes I go in and we all talk together, and I appreciate their dynamic.

Jason's meds help.  He has not had a panic attack in a long time.  He does not feel suicidal.  And yet he does still experience the anger.  He flies off the handle without any warning, and he can be brutal.  I try not to take it personally, but the truth is, I'm trying and trying.  I'm trying to make up for it all.  I'm not perfect, but I'm trying.

On April 7, I was cooking for the Passover seder that night, and Ken was dictating the cleaning orders to the kids.  It's always stressful on those occasions.  I left the kitchen for a few minutes, and when I returned I found Allison with ice on her jaw, and no Jason.  He'd punched his sister and then run for it.  I was babysitting the stove, the matzo balls were simmering, so I asked Ken to get out and find Jason.  Ken said it was a bad idea, as angry as they both were.  I forced him to go.

Within moments, Ken returned alone, and recounted the story that was later corroborated completely by Jason:  Ken had found Jason, barefoot, on the road near our house.  Ken pulled over his car and told Jason to get in.  Jason ran, so Ken parked and caught up with him.  They yelled at each other for a couple minutes as Jason backed up, finally backing into a pole and hitting his head.  It hurt, and as furious as Jason already was, he spit in Ken's face.  Ken responded by hitting Jason.  A woman passing in her minivan saw the whole thing and pulled over, screaming that she was calling the police.  Jason took advantage of the second's worth of confusion and fled.  Ken knew it was over and returned home. 

I don't remember what happened with the matzo balls, but I threw on shoes and left to find Jason myself.  Instead, I found the cop and the woman talking.  I pulled over and said they were talking about my son and I'd like to be involved.  The cop asked me to wait in my car, which I thought was foolish when Jason was running off barefoot, but whatever.  The cop followed me home before he would talk to me, but at least he sent a few cars out searching for Jason. 

Nobody could find Jason.  They knocked on Laura's door, and a few friends' doors, and couldn't find him.  For 45 minutes I sat in my living room with Ken and this cop, then another cop and another, while my mom and sisters arrived with their side dishes for dinner.  Finally, a car pulled up with Jason in the back.  We all converged in the driveway.  The officer who'd brought Jason home from 3 miles away and across the highway said he needed to be transported to the hospital by ambulance immediately.  The officer who'd been with us since the beginning thought this was unnecessary and negotiations began.  In the end, we were able to have dinner together and then Jill and I took Jason to the hospital, where he was not admitted.  Guess if that was a fun dinner.

Why does Jason want all of this told?  I'm a little uncomfortable typing it.  Anyway, that was the last major incident, knock wood.  We've spent the past few months trying to do some damage control.  Jason did pass Photography and Latin at the end of the school year.  He's currently at summer school taking English and Science.  In the fall he'll take Algebra and Geometry concurrently, and I'm already trying to get a tutoring plan in place.  With the assistance of the guidance counselors, he'll also have a special study hall, with just a couple other students and a teacher facilitator who will help Jason continue to work and stay organized.

Jason is doing fine in summer school.  He already has a great relationship with the English teacher, who noted almost immediately that Jason doesn't belong there.  Jason was showing off, quoting Walt Whitman and knowledgeably discussing Finnegan's Wake on the first day.  He says he learns better in this alternative environment, but it seems to me he already knows the material.  We'll see what happens in the fall.  Hopefully he'll have enough supports in place that he'll be able to get through and eventually achieve educational independence again.

Jason's hair is bright blue.  He bleached and dyed it himself.  As always, he is a non-conformist.  When he was little I predicted he would be a goth teen, but he's not.  That would be too much like conforming to something, maybe.  He does wear black jeans all summer, though.  Wouldn't it have been a shame to lose this person from the planet.  This quirky, thoughtful, thought-provoking, funny boy.  Jason, I hope you know how much I love you.  I just.  I love you.

People ARE nicer

Just yesterday a friend told me she's been diagnosed with a recurrence.  She won't have to lose her hair, she said, and the chemo will be easy.  I hope so, because this is a very active woman!  Interestingly, she somewhat regrets that she won't go bald this go-around.  "Everyone was so nice to me when I was bald," she said.  I'd honestly been thinking the same thing the past few weeks.

The last time I was bald, I was pulled over by a state trooper for running a light at a major intersection.  The trooper approached my car and spoke to me very gently, asked for license and registration as he pointed out my misdeed.  I muttered that I was running late for an appointment (headed for radiation), and then realized that uncharacteristically, all of my documentation was left at home.  I had been in the process of renewing my registration when I'd left.  I had my license, that was all.  I also had a crack along the whole width of my windshield.  I told him honestly what had happened, and he wished me a nice day, asked me to please drive more carefully.

Another time, with some sort of scarf on my head, a stranger approached me in the Target parking lot and asked if he could pray for me.  He took my face in his hands and prayed to Jesus that I would become healthy.  It was comforting and promising, and a bit weird. 

Last week I was dressed up for an appointment, and had Jason take a few silly pictures of me before I put on my wig.  I got something like 33 comments on Facebook about how beautiful I am!  We're all beautiful, in my opinion, but I got told 33 times!  How cool is that!

Last night I went to a band parents' meeting, where I knew just about everyone.  Mostly everyone has seen me often in the past year, but I guess because I was wearing my pretty scarf, several people asked how I am feeling.

The answer:  I'm feeling great!  Perfectly well.  I look like a patient, but I don't think I look like I need pity.  I'm running all over in my favorite summer clothes, socializing, relaxing, traveling (went to Arizona to see Renee, and tonight I'm driving to North Carolina to get Allison).  Although I've been on chemo for 13 months tomorrow, it's only been obvious for the past few weeks.  It's kind of nice to know that when I need to take a seat, nobody will glare at me for not giving up the seat for a child or something.  I remember that afternoon at Macy's in May, when I felt so sick I nearly fainted, but was completely ignored by the sales associates right near me.  I bet that wouldn't happen now.  As an obvious cancer patient, they'd be by my side, bringing me the water I'd desperately needed.  As some strange healthy-looking woman with her head in her lap, I was looked upon with scorn. 

People are nicer when they know.  Baldness is my label.  It somehow makes me wish we could all have some sort of label when we're going through a rough time.  I wouldn't get so annoyed with that lady whose cart is blocking the entire aisle if I know she is thinking about her mother's very recent funeral.  I would be kinder if I knew the guy choosing vegetables to my left was just laid off from his job of 13 years and was delaying his return home.  Most of all, I wish children with autism could be readily identified, because I cannot stand to see the hatred directed toward those mommies who try extra hard every single day.  It's not realistic to expect all people to treat all others with kindness all the time.  We humans can be quite annoying.  But the label thing, it could help.  For now I'll appreciate my label.  And yet, I think I'd rather have hair and the scorn of Macy's employees.

Hanging On

I haven't written in awhile.  This is the busy time of year for me and my cohorts in parenting.  School concerts, playoff baseball games, year-end school activities, class trips, Phillies games, parties, swimming, and in my case chemo on Tuesday afternoons.  I've already had three treatments, and I get this week off.  I have a printout on Abraxane that I was given during my first treatment (treatments are mercifully short, just an hour or so), and thus far my side effects have been following the guide faithfully.  Fatigue, check (but not bad, just one day out); nausea, again, not bad; neuropathy, continuing where it left off following Xeloda.  Hair loss:  dramatic. 

I was fine, with every hair in place, until I showered Thursday morning and noticed the drain was pretty full by the end.  By yesterday morning I could pull out a clump without feeling it.  Last night I could practically feel the follicles parting from my scalp, and had trouble sleeping.  This morning was the worst of it, though.  I lost about 50% of my hair just during this morning's shower.  It was massive, frightening, unreal.  I have thick, dark hair.  As I conditioned, I worried I would emerge completely bald.  Why, oh why couldn't it have lasted just two more weeks?  School ends on June 15, and everything is going so well for me there.  I sub just about everyday at the middle school, and I enjoy it immensely.  I love the kids and the environment and the friends I've made. Some people know about the cancer, many don't.  I have support and anonymity simultaneously.  Until now, that is.  Two days after my last entry, I decided to get my hair cut short so the loss would be less dramatic (heh, that went well).  My wig is currently at least three inches longer than my hair.  If I wear my wig to school, it will be quite ridiculous to expect anyone to believe my hair grew 3 inches in a weekend.  If I wear a scarf on my head, I fear it will make me look like a sick person to the kids.  At this point I still have just enough hair to appear normal in public, but I certainly can't avoid the shower.  What will I face in the mirror on Monday morning?  No matter what I choose to do in this situation, I think people at the middle school will see me differently, and that's not good.  I just got unsolicited positive feedback from the principal on Friday.

On the big plus side, I haven't taken a single Advil in two weeks.  Just after starting the Abraxane, the nerve pain down my legs became especially intense, and Advil stopped working.  Dr. Fox prescribed a five-day Prednisone pack, which provided immediate relief.  I feared the pain would return immediately after finishing the pills, but it's been barely noticeable, just a twinge now and then.  Loreli insists it's a good sign that the chemo is doing its job, but I won't be too optimistic until I see the tumor markers drop.  I'll have blood tests during my next appointment, on June 11.  I do think the lump is shrinking, though.   

How ironic.  Just when I'm feeling better, I'll look sick.

Hair today, gone tomorrow

I wept quietly in Dr. Fox's office when he suggested I would have to switch to an infusion chemo.  The new chemo, Abraxane, won't make me feel sick, and it's an easy, short infusion ... but patients on it lose their hair.  I wept for my hair.  I went home, and I focused on my hair.  And then I made peace with losing my hair, but in actuality I felt it wouldn't happen.  My tumor markers rising had been a fluke, and this month's tests would show a drastic decrease, especially after denying myself sugar for weeks.  Still, I told myself and others, hair's hair, it's not that big a deal.

What I failed to realize until Loreli called during 9th period cycle math is that tumor markers going up IS a big deal.  I'm not going toward remission, I'm traveling the wrong direction.  I couldn't even make it off the phone before the tears attacked my cheeks, and the kids fell silent, whispering, "Is she crying?"  I realized I couldn't stay, and 20 minutes later here I am, still crying.  No, I really don't want to lose my hair, but what I don't want to lose more is my optimism.  All this time I've been going along, physically improving as I go, sure in some recess of my mind that I could beat the odds and live for 20 years or so.  That I could see a grandkid or two, watch my kids begin their careers.  And now here's my mortality back to bite me in the ass.  I have to start all over again, face it all over again.  I'm really not that strong, I'm just generally in denial. 

I don't even know where the cancer is right now.  Is it back in my liver?  How?  Why?  Is it just in that little lump I found near my arm pit?  Is it back in my bones?  Is all the pain in my legs because of the cancer?  Fox might set up a biopsy on Tuesday for the lump, but I don't know about the rest of it.  I have no idea what my body is doing.  How could I be so out of touch?

So I guess I'll make an appointment to have my wig washed and styled, even though this isn't like a Day 19 Taxotere/Cytoxen hair loss, it's much more gradual.  And I'll finally look like the patient I've been pretending not to be for the past 5 months.

Alive on MBC

To me, the word survivor indicates that some traumatic event occurred, and someone lived to tell about it.  The event is concluded, and someone survived.  A plane crash, a tornado, a plunging elevator, a sinking ship, a horrible relationship.  With a miracle, or inner strength, or just plain luck, people survive such catastrophes.  So, are we walking wounded with metastatic breast cancer, or perhaps any cancer, actually survivors?  Did we come out on the other side of something?  As a staunch realist, I continually need to bite my tongue when I'm called a survivor.  I'm a soldier, maybe.  Still in battle.  My chemo message board group calls itself the warrior princesses.  I'm a warrior.  I wouldn't make a great princess.  This weekend I heard words tossed around like conqueror and metavivor (wtf?).  I can't even conquer nausea when it strikes, so that term seems inapplicable, and metavivor is beyond contrived.  I am not a survivor.  Gloria Gaynor:  survivor.  Me:  struggler.  More upbeat, you say?  Okay, then, I'll accept warrior, as long as I don't have to apply extra makeup and lots of pink stuff.

This weekend was purple, like the theme color of the organization called Living Beyond Breast Cancer, which, fortuitously, is based over the bridge in Haverford.  LBBC holds a conference each year for people with metastatic breast cancer and their caregivers.  Ken had to take Jonah to baseball, so I took Jill.  Which turned out to make more sense, anyway, because it wasn't the most he-man environment.  I was excited but nervous about attending.  I've learned that anything associated with MBC will be either depressing or uplifting.  Depressing can knock me off my feet for a few days.  Uplifting strengthens me until I feel like I have some resolve, even some control.  Therefore, I breathed a huge sigh of relief immediately upon arrival at the conference yesterday morning.  Women in purple, yellow, or blue plastic leis milled around the lobby, grabbing coffee and scrambled eggs before heading to tables inside.  I was given a purple lei because I am a survi -- warrior.  Jill got a yellow one.

I'd never seen so many MBC victims at all, and here we were gathered, talking, laughing, sharing our diagnoses.  Where are your mets?  When were you diagnosed?  Nobody looked sick -- no wheelchairs, breathing tubes, etc. -- but we all seemed to be taking lots of pills.  Many bald women, of course, some with head coverings, some without (today, the bald women were much braver about showing off their shiny craniums -- crania?).  We were from all over America, come together to learn, share, and empower ourselves.

After gathering our plethora of swag and finishing our breakfasts, the first panel began.  The discussion regarded perspectives on breast cancer, but it was mainly about meds.  However, the great paradigm shift that was discussed at length pertained to the changing consideration of MBC as a chronic disease rather than a terminal disease.  Four oncologists said we are "almost there," to the point of considering MBC patients the same as specialists treat diabetes or heart disease patients:  as patients who can live a long, stable life with continuing care.  As you would expect, we were fortified by this information. 

After the panel discussion and lunch, I went off to the nutrition seminar.  The woman leading it holds a master's degree in nutrition and is the nutrition specialist at the local Cancer Centers of America.  She knew her stuff, and shared willingly.  I was the first to ask a question at the end of her presentation.  I asked about sugar feeding cancer, because I hear it so often.  In fact, I've been mostly sugar free for the last few weeks, leading to quite an adrenaline burst.  The nutritionist, however, said it has to do with insulin levels, and there has been no scientific evidence to prove that sugar in moderation will cause the cancer cells to expand.  Today a doctor suggested that we could "eat a piece of cake, not a whole cake" and be fine.

One problem that was widely expressed during the course of the weekend was fatigue.  Thank goodness.  We're all tired, and it is serious.   And right now, the only decent prescription is exercise.  I suppose the doctors are taking it seriously, then, but not big pharma.  Oh well.  Pain, on the other hand, has multiple fixes.  I'm in pain most of the time these days, thanks to Xeloda and Exgeva (the monthly shot I get to protect my bones), and I've just been taking Advil.  However, I've taken so much in the past few weeks, I now realize it's time for me to discuss pain management with Dr. Fox.  I had thought he would simply prescribe one of the general, sleep-inducing oxysomething pills, but apparently pain relief doesn't have to equate to further exhaustion or added dopiness (I, for one, am quite dopy enough). 

Today I attended a seminar on liver and lung mets.  I left with about 15 questions to ask Dr. Fox at my next appointment.  He might end up sorry he gave Jill his parking spot yesterday morning (long story)!  The information wasn't right for this blog, but if anyone reading this wants to ask me questions, message me or email me or call me or whatever.  The last discussion of the conference regarded complementary treatments, and that was pretty much what you'd expect:  accupuncture, exercise, meditation, pot, yoga.  Speaking of yoga, LBBC will be holding Yoga on the Steps on May 20 at the art museum.  Anyone want to come along with me?  You just have to raise and/or donate at least $60.  It sounds like it will be incredible.

Can you tell how impressed I am with LBBC?  I should also mention that I attended the conference for free by attaining a fee waiver from the LBBC web site, and that Komen provided travel grants for many attendees.  Finally, I'm thrilled to have met some new and lovely friends this weekend, and as ever, I'm filled with appreciation for my existing friends and family.  Love you!