Living with Cancer This Week

card-photo.jpg

red neckI haven’t been able to pick my head up for long enough to do anything, let alone write an update for this blog. They said it was going to get worse before it gets better, and they were right.  I’m in the shit and am so sick.My last day of radiation was Thursday. I almost didn’t make it because I spiked another 103 temperature with chills.  For the past 2 weeks, I’ve been getting these random fevers but can break them with Tylenol… and then subsequently sweat for 8 hours straight.  I told my DF Dr’s about this and they said to quit taking the Tylenol because I may be masking an infection.  So… when it happened again on Thursday morning, we drove to the Beverly Hospital ER (because it would have been 2 hour traffic to Boston at 8am) and started the “what is going on with my body?!” process.  They couldn’t find anything.  After breaking the fever with Tylenol (through my tube), and taking blood from BOTH of my arms (and an extra attempt at an IV in my hand) they discharged me at 1pm and by 2:45pm I was on the radiation table for the last time.  I was sweaty, nauseous, and in rough shape.  But I made it.The normal machine I use was broken, so I was given radiation in a different room. I had planned on lovingly placing my mask in a specific trash can in my usual room, but as with everything, we have control over nothing.  So Jim (one of my radiation techs) and Susan (my radiation nurse) and I walked down the hallway to the other room, and Jim said, “I think I know the answer to this, but Jaime, do you want to keep your mask?” Without hesitation I said, “Fuck no.”  And with a smirk, he replied, “That’s exactly what I thought you were going to say.”  After the last zaps were done, they unsnapped the mask and I gave it the bird and walked out.  My friend, Jessolbert had a different idea and sent me the YouTube video from Office Space when Peter, Samir and Michael Bolton take the printer to a field and kick the shit out of it.  But to me, my mask had served its purpose and I let it go.  As a thank you, I gave my radiation techs; Mike, Alicia, Chuck and Jim splits of good Champagne, and Susan a small bottle of Patron (don't worry Chemo Beth, I've got one for you too) and Neil the guy who checks me in every day a split of Prosecco.  I told them to think of me when they drink them.  Those people helped to save my life.  I owe them an entire bar.Unfortunately, I’m not popping my own bubbly yet. These next 2 weeks are supposed to peak in terms of side effects (that puts Christmas at THE height of it) and as Dr. Margalit and Susan said, “Your family and friends will want to celebrate today (last radiation zap) and you can barely hold yourself up.  Don’t think of it as being over.  Go back to being a robot and put your head down, re find your strength and just get through it.  Nose down, straight and narrow.”My whole mouth, the back of my throat, my teeth, the roof of my mouth, my tongue and the part of my throat where radiation targeted my tumor are COVERED in mucus. And when I say “mucus,” I mean thick, almost TAFFY LIKE snot.  When I open my mouth and breathe out, I always form a bubble.  I wish I could explain it better.  The mucus doesn’t end.  Just like when you’re trying to get honey from the jar, it keeps going- so does this phlegm.  I can keep pulling it and pulling it. Remember the huge guy in The Green Mile when all of the flies come pouring out of his mouth for what seems to be way too long?  That’s me.  With snot.  Out my mouth. I cough and spit (and have to use my hand to break the spit from my mouth since it’s so thick) roughly 200 times a day.  I gag at least 150 times.  In fact, I gag so much because the mucus hits my gag reflex- that I throw up.  Imagine how nice it is to throw up formula and water and stomach acid by the place that is raw and has just received intense radiation.  Also, imagine how nice it is for your feeding tube to bear the pressure from your stomach as it heaves to get the bile up through your esophagus and into your mouth.  The struggle is real people.  Mike says that when I sleep (with 3 pillows behind me to stay upright), it sounds as though I’m gurgling through a big glass of water.  The Dr’s say that all of that mucus is the “sloughing off” of my tumor from my larynx.  I guess it has to go somewhere and those dead cancer cells need to get OUT of my body.  I constantly feel nauseous even when I take my anti-nausea meds.  My head is usually pounding.  I will be lying in bed able to read a book and then out of nowhere, the room will start to spin, beads of sweat form on my face and I will want to throw up.  To say that I am weak is an understatement.  My goal for the next 2 weeks (and going forward) is to build my nutritional intake.  And all “eating or drinking” is done through my tube now.  There’s no way I’m putting anything near my throat.  It is a SEARING pain.  Every time I have to swallow or yawn, I want to cry.  I do try to take at least 5 sips of really cold water every day so that I don’t lose my ability to swallow.  I have pain medicine but they all just make me so doped up and sleepy.  I’ve always been bad at drugs.  But I take them, and I sleep, and I’m able to escape.  Even without the drugs, I sleep for 10 hours at night (with coughing/gagging and spitting fits) and nap another 2-4 during the day.  My skin looks different now from the picture above (which was just taken on Tuesday when I didn’t feel like hell).  It’s broken open and peeling.  It reminds me of a poorly cooked steak.  Black and charred on the outside and red and raw in the middle.  It feels like a sunburn. I put greasy Aquaphor on it to keep it from drying out and worsening.  My Dr’s say that virtually the same thing is happening on the inside of my throat.  I spared you and didn’t add a follow up pic.  I think you get it.Our days are long and if I shower, I feel like I’ve accomplished something. Mike hangs out and takes care of Sam every second of every day.  I don’t even whisper anymore because it hurts and creates more phlegm than I want to deal with.  We communicate through pen and paper, text or charades.  But honestly, Mike is terrible at charades (reading my mind).  I am either in bed or on the couch with my head always on a pillow.  I can’t wait to feel better.  I feel drained and exhausted and so spent emotionally and physically.  Oh and a couple of other neat stocking stuffers…  Because of the amount of radiation I received and where it was directed, my thyroid will stop working on its own.  Maybe it already has.  They will be checking it soon and I will go on medication for the rest of my life (as long as I’m cancer free, I could care less, but definitely worth mentioning!).  And we met with a Dermatologist on Wednesday.  I had her check out a mole on my left temple that had started to grow at the beginning of my pregnancy with Sam.  Yup, it’s suspicious.  She said, “I wish I didn’t have to say this because you’ve been through so much in such a short period of time, but there are too many things about this that make me question it.” So in a week I’ll find out if it’s benign, pre-cancerous or cancer.There’s a phrase I use in most of my yoga classes… and actually in my everyday life. And that is this:  “Nothing lasts forever.”  It’s true.  I use it to remind people that the pain will break and there will be an ending.  My Guru just texted me to remind me that Winter Solstice is tomorrow.  And that there is always light after the darkness.  I just need that light to come sooner rather than later.