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.