The stormed placebo effect……

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So we are done with chemo, for now.  He’s had one fever that took us to the hospital because it hit that magic number of 100.4 and with his port still in, he needed to have labs drawn, antibiotics given and with his adrenal insufficiency he needed a stress dose of steroids.  We were in and out of the clinic in 4 hours.  It was oddly a Tuesday too.  The day after chemo normally would be when Adler would get a fever which would send us to the hospital either to the ER or the clinic.   I wondered to myself if it was like a placebo effect.  Take 10 people give them all what they think is the same pill and will they all have the same effects??  Was Adler’s body doing that?  Was it so used to chemo days over the last 15 months that it spiked a fever just cause?  I know that’s not the case but it sure made me wonder.

Then the other thing that has so sadly graced my thoughts is this…..I am suffering from the same thing.  I felt oddly comforted by having to take him to the hospital.  Why is that?  For over 2 years I have fallen into the role of Adler’s caregiver.  Yes, his mother, but his caregiver.  I care for him.  I take care of him.  I line up all his meds daily, weekly by morning noon and night and make sure when refills are and write down patch night on the calendar along with every nurse, every doctor and every phone number needed just in case along with my therapist all memorized and necessary for the best giving of care. I feed him, whatever he wants whenever he wants it because a chemokid can love something one day and hate it the next.  Stock up on his favorites and wait a week, he won’t like it anymore.  I shower with him as he cannot bend over to wash himself and have never minded even with a raging migraine and the last thing I want to do is bend over to wash him but I do and thank God for his dissolvable Zofran that he didn’t like the taste of because I took one so I don’t puke on him.  It’s all in the caregiving part.  Hours of worry.  Weeks of sleepless nights plunging morphine down him to ease the PAIN.  Days spent just sitting with him while he watches countless YouTube gamer videos on the heating pad waiting for him to hurt.  That’s been my life.  Packing the chemo bag with all the necessary items for the hours we’d be there.  Chargers, devices, games, crayons and coloring book, sticker books, stuffed animals, action figures and snacks per his and Aaron’s requests.  And once I unpacked it, we needed it for his fever and trip to the clinic.

I rushed around feeling content to do so.  I didn’t see it or feel it until today while chatting with a beloved friend and fellow cancer mom and I asked her if she felt the same way.  Because now the it’s “over” for now and we hope for a very long long time, I just don’t know what the hell to do with myself?? Adler is in school and Aaron is working, even got promoted so he has new stuff going on.  Adler is doing well in school and he loves it so much!  I am happy for all of that.  Thankful too because his PAIN is better.  Thank God, it’s better.  We have gone down on his fentynal patch and his morphine intake is way down too!  And I am not dwelling on the past or living there at all.  In fact it’s much like jet lag.  Like my mind is still on chemo time not on Indiana time.  The fellow cancer mom agreed.

I thought it was like I was stuck, but I’m not.  I am moving on, carrying on still but it’s almost like that of an addiction, which I have learned a lot about as I have been sober for 6 months now.  I still need my hospital fix.  I feel comfortable there.  Amongst the nurses and docs, the beeps of the IV pole, the hum of the lights the tic tock of the clock that I have to take the batteries out of, the smell of hand sanitizer and hospital linens.  It became my normal.  My function.  My every week.  I didn’t look forward to it.  In fact I hated chemo, I still do.  But I needed it too.  It may make no sense to a normal  person but to me it does and it did.  Our second home.  Our family was taken in and treated with love and given purpose in room 605 or 615 or whatever one it was.  I needed my ice water with the tiny ice and styrofoam cup and bendy straw.  My chair to be right by the bed and my phone at my side to take his picture and share it with the world.  His iPad going and our music playing a new playlist and the nurses diggin’ our room.  They said I smelled good.  They liked my lavender and patchouli scent.  All things calm for me.  Its such an odd thing to admit that I needed and still feel like I do.  I mean what the fuck???  How weird is this?

Find something to do with your time, is what I have told myself and been told by others and my therapist too.  But what do I do??  I have no idea.  I really don’t.  I know this much, I am exhausted.  Fully, mentally and physically, I am exhausted.  I have not stopped to take much of a break for 2 years.  Girls nights, maybe some shopping, a few hours here and there to watch a movie or take a bath but is that recharging??  I don’t know.  It’s nice but my brain is still on chemo time.  Last night was a Monday, what used to be chemo days.  I actually wanted to stay up late as my mind told me to because that’s what I used to do.  I would stay up to give Adler his anti nausea meds every 4 hours.  It makes no goddamn sense, but then again it does.  It is routine.  It was my functioning way.  It’s like I have become dependent on it.  Like a drug. And now that I am not on it anymore, I feel the effects even still.  Like a placebo.  It’s an odd thing to admit.  Even more so than saying I didn’t have control when I drank.  I am trying not to laugh it’s so odd to me.

New normal….I don’t know what that is.  Or go back to normal…..how?? He was 3 then, a toddler and I was just figuring out this mom stuff.  Boy, did we all have to grow up real quick. And as I have mentioned, for me it was sitting in that waiting room during his first visit to Lurie when they took him in for an emergency MRI of his full brain and spine.  I grew up in 2.5 hours with the cold air blowing down on me from the AC and the lights buzzing overhead and the chairs pulled into a table for us to eat some sandwiches Aaron grabbed, washed down with a ginger ale from the nurse and a cartoon on the TV.  I hate that waiting room.  And we go there every 3 months but yet, I love it too because that day was an awakening to our lives.  Adler was saved from hydrocephalus and we learned of the tumors and the storm began.

I am lost and found at sea right now.  Floating with my head back, sun on my skin, wind in my hair, salt on my lips from the ocean air and tears from my eyes.  I can see the land and I remember the feel of the sand on my feet just like I did 2 years ago.  But now it’s a different beach.  Who the hell knows which one? I don’t.  And maybe it’s not for me to know yet.  I will know it when it happens.  But until then, I am stuck in a fog of jet lagged chemo time with my heart repaired from the brokenness of cancer and illness addicted to the cozy confines of the hospital room and the reassurance of the every week appointment to tell me Adler is OK.  Huh, and I thought quitting smoking was hard 13 years ago………

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