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.