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!

Drive

Do I need to update about the tests from Wednesday?  Most of you saw on facebook, right?  Okay, then very quickly:  I had a CT of my abdomen that looked exactly like the scan I had in January.  Which is a good thing.  I had MRIs of my brain and my pelvis.  No news is good news on the pelvic scan.  Fox didn't have those results yet when I saw him, but said he didn't expect to find anything amiss.  The brain scan looked perfect, no brain cancer.  Just some more of those healed bone pieces on my skull.  Apparently I had cancer all over my bones?  I'm not asking, he's not telling.  My tumor marker was back up into the 80s, but that's only a slight increase that Dr. Fox said he won't take seriously unless there's another increase in 4 weeks.  One slight increase could have more to do with the lab than with my health.

It's a gorgeous day, but here I sit.  It took 3 advil to get any rest, which I finally got in the morning.  The chemo is numbing my tongue today, which probably just means I'm not drinking enough water, but I'm also a bit nauseous.  I want to go out for a walk.  I want to write.  I have mental drive to do go for the walk, but my body is not on board at the moment.  So I write. 

I need to eat better, but I don't want to do the research.  I don't want to switch to all the foods that are better.  I'm resistant to giving up sugar.  Food worries cause me stress, and I'm not supposed to have stress.  But of course, my entire existence is wracked with stress at the moment.  Which worries me.  I took a meditation CD from the chemo suites, and I even took off the plastic.  But I haven't listened to it.  I'm afraid I'm relying on everyone else to tell me what to do, and then I'm still not doing much of it.  It reminds me of someone, which worries me.  I'm feeling my eyes close as I write.  I don't want to drift off to sleep.  I want to take a shower and start my day at, at, at ... 3:43 pm.  I have no idea what's wrong.

Allison and I took our first college tour yesterday (talk about exhausting).  I figure she'll get into the school, no problem, but she mentioned that she's worried about her essay.  She insisted there has never been anything in her life that's interesting enough to be a topic.  I pointed out that her mother has metastatic breast cancer, and she said that has nothing to do with her.  I noted that it limits what I can do with her, and that sometimes because of me she has to find her own way.  And she looked at me and said, "You're here today, aren't you?"  I guess it's enough for her that I can still take her places.  I said if she's going to have to suffer with a mother with cancer, she might as well take advantage of it on her essays.  At which point she rounded on me and announced, "It's not all about you all the time!"

It's not?

Bumps

The bumps on my head are back, so I have headaches most of the time.  My emotions are all over the place.  Yesterday I cried all day, and today I was downright nasty.  Now I'm sick in bed, and I have to slice the brisket.  I don't think I can handle being around food right now.  I wonder if the brisket is getting ruined, sitting there waiting for me.

My legs hurt from my hips to my ankles.  I had a dream that I was driving with my legs crossed at the ankles and they got stuck that way.  The car was careening downhill and I could not get to the brake.  It woke me up. 

Kevin started chemo on Monday and he is so sick.  He already had to go to Penn for fluids yesterday.  Dayla found out her cancer has spread everywhere.  It's in her bones, her brain, her lungs, and her liver.  She's quite determined to fight.  If you want to see strength, that's where to look.

I don't know what my story is.  I told Dr. Fox my litany of symptoms yesterday (with Jill's help, because I had trouble remembering all of them), and naturally he's concerned, but he has no idea what they could mean.  What he said to me is that his job is to discover if I have anything wrong that is connected to my breast cancer, so he's running CT scans on my brain (though he doesn't think I have cancer in my brain) and abdomen, and a pelvic MRI.  I'll have all of this done Wednesday morning, and then I'll meet with him the same day to hear the results.  He's already warned me:  if it's more cancer, I have to go back on the Ixebippilone, that horrible infusion chemo I took last summer.  I gaped at him and asked why that, and he said because he already knows it works on me as a primary attack form, and he'll pull me off it again when I stop tolerating it.  I can't even tolerate the word Ixebippilone.

When you leave the exam room at the breast center there, you have to check out before you leave.  It's just a matter of making follow-up appointments and so forth.  They also make any other appointments you need, like for CT scans and such.  The woman who helped me yesterday was working hard to get all of my appointments spaced just right on the same day when suddenly the word Ixebippilone went swirling in my brain and the world crashed.  I started to cry, and couldn't stop.  The woman immediately stopped to help me, and had Jill come over.  A minute later a very kind nurse scooped me up in a big hug and led me into a chemo suite.  That's the kind of sensitivity it takes to be an oncology staffer.  I vented to her a little bit, and she thought the social worker could help me.  I ended up talking, with Jill, to the social worker and a different nurse for nearly an hour.  They're going to help me figure out my Penn bills, because I get a bunch of them and find them overwhelming.  They also made me an almost immediate appointment with the staff counselor, who I met before when I was originally diagnosed.  That appointment went well, so I'm going to continue to see him.  He thinks he can help me stop feeling overwhelmed all the time.  Oh, his name is Mark.  Or Marc?  I think it's Mark.

So that's me, mostly up to date.  I should get back to the brisket, because the sooner it's sliced and soaking in the juices, the sooner I can get to sleep.  Have happy religious holidays this weekend!