The Start of Week 6


hairlineMy hair… I figured it out.  It’s not falling out from the chemotherapy; it’s falling out from the radiation.  And the shitty part is that it’s not going to grow back.  Radiation is different from chemo.  Radiation kills things dead like cancerous tumors and anything else in its path.  The cancer on my larynx is directly targeted by the way I lay on the radiation table in my mask.  My head is tilted a little upright so that my chin is almost at the highest height.  The radiation comes from all angles and fires its zaps.  Unfortunately, those zaps also hit my beloved healthy hair follicles that are located directly behind my throat.  So now, in the back, my hairline is much higher than it once was… by 4 inches.  On the vain positive side of things, it’s not in the front and you can’t see it unless my hair is up.  Also, it’s better than the back of my head lying permanently on a coffin pillow.  Wink, wink. I now have a love/hate relationship with my feeding tube.  I love it because I finally have some nutrients in my body.  I hate it because it’s a tube sticking out of my stomach.  It leaks like Sam’s clogged tear duct in his eye and it’s just generally uncomfortable.  But it’s helping.  And for that, I’m grateful. This Wednesday after chemo, I developed another rash on my face.  The redness crept all the way up to my eyelids and left the lower part of my face blotchy.  It wasn’t as dramatic as the first reaction a few weeks ago, but it was worrisome enough for my doctor’s to believe that both cases were drug allergy related.  And this time around, they had given me the “deluxe package” of steroids and only HALF the amount of chemo… and still, a rash 24 hours later.  So now it seems as though we may stop chemotherapy altogether.  Radiation has always been my number one treatment to kill the cancer.  Chemo was sort of the aggressive older sister coming in to stomp out any embers left from the blaze.  I’ve had 4 rounds of it and both my Medical Oncologist and my Radiation Oncologist believe that it’s not worth the risk of any potentially life threatening drug reactions.  Usually itching and shortness of breath come next… I should also mention that they are both confident that the radiation will do its job.  That it will be strong enough to take out the beast.  We are still going to go week by week but after Thursday’s meeting, I doubt I’ll see another chemo infusion.  It’s a little bitter/sweet.  I want to keep drowning my body in anti-cancer everything, but at the same time, I’m happy to have less drugs and less risk of fever, rash, shortness of breath, the whole thing.  Oh and the ringing in my ears should go away too.  Thank God. I have 9 more radiation zaps left.  That’s 2 more weeks of treatment.  Again, it’s bitter/sweet.  Nine is a single digit number.  A whole lot lower from the 35 that I had started out with… But it also means that it’s going to get worse.  My neck is now pretty red and I’ve been using radiation cream on my skin because it’s starting to burn.  I don’t have mouth sores yet but these little blisters keep popping up on the insides of my cheeks.   Sometimes they go away, and sometimes they stick around for a few days.  And you may think, “Start celebrating! Only 2 more weeks of hell”! But that’s not true.  Sad face emoji.  The radiation continues to work for another month after treatment stops and sometimes the side effects worsen even after the zaps have stopped.  And I just found out that even though I should start to feel better by February, my taste buds won’t come back until March.  Trying to see the positive.  Trying not to drown in short sightings.  So, on the plus side of things, I have a really tan face from the radiation.  On the negative, radiation can cause skin cancer.  I have a dermatologist appointment set up at Dana Farber for mid-December.  Go figure. It’s so strange that my former life has completely stopped.  Imagine your life as you know it just ceasing to exist.  I no longer grocery shop, go to yoga, go to the gym, go for runs or long walks in the woods.  I don’t cook, set the table or light candles, eat, drink or go out.  I don’t design my yoga class for the week or put together playlists, I don’t teach yoga, and I don’t go to my restaurant and work on my feet with the people I love.  Instead, I wake up, take care of Sam (after Mike has gotten up with him all night long), sit in traffic for 1.5/2 hours into the city, spend 2-8 hours at the hospital depending on what we having going on, then spend another 1.5 hour in traffic coming home, feed myself through my tube, watch the Foodnetwork and go to bed.  That’s what I do EVERY DAY.  I don’t take calls because my voice is weak and I rarely if ever let even my close friends knock on my door to come visit.  I’m in this crazy animalistic protection/survival mode.  I’m hunkered down to push through to the other side of January.  Again, thank God for sweet baby Sam.  If he weren’t a part of our lives, I would have a hard time finding joy in the monotony of my day.  He brings out my smile with his smiles (he’s smiling!!).  He needs us.  He needs me to take care of him and be his mom and give him love.  And that love oozes from me whenever I see his cute little face. I’ve been trying to come at life with more laughter.  It doesn’t seem like it as I re read this post... it’s a little Debbie Downer.  But hear me out: I think I have a pretty good head on my shoulders and a heart wide open as far as this whole cancer thing goes.  It’s the other stuff that has come up in the wake of a life threatening sickness that I’m talking about.  Again, my super smart Spiritual friend Petey says to try to laugh at the hard stuff.  And I bet chiropractor Jerry would agree.  It’s the simple act of not taking myself so seriously.  My Guru and close friend Jen agrees too.  She teaches her kids to “feel it, then put away the sad and take out the happy.”  And so that’s what I’m trying to do with all of my past shit.  It’s easy for me to minimize the drama in other people’s lives so why is it so hard to do it within my own?  What’s happened has happened, I’ve felt the feelings, I’ve replayed the episodes in my head, I’ve worked through it extensively and now it’s time to laugh it off and let it go.  And you know what?  It’s starting to work.  I don’t need the heaviness.  I don’t need it on my shoulders and I don’t need it in my throat.  I need to shake it off.  So.  Laughter.  And love.  That’s how I will continue to fight and heal.  Surprisingly, I already feel lighter. An old friend of mine sent this to me in a letter early on during my diagnosis.  I didn’t think much of it until now (funny how life works like that)…  “‘Remember Laughing?’ Laughter enhances the blood flow to the body’s extremities and improves cardiovascular function.  Laughter releases endorphins and other natural mood elevating and pain killing chemicals, improves the transfer of oxygen and nutrients to internal organs.  Laughter boosts the immune system and helps the body fight off disease, cancer cells as well as viral, bacterial and other infections.  Being happy is the best cure of all disease.” Patch Adams