Self Discovery

I woke up this morning feeling like crap.  Sore throat.  Sweaty.  Coughs.  Grumpy as all hell.  By the end of the work day I’d taken it out on co-workers.  I had chills alternating with sweats.  Wonderful.  Felt worse by the minute.  Sheesh.  My kids aren’t even here to make me sick.  I’d managed this bug all on my own.

And I wanted to cry.  For no reason.

At least I knew what caused that.  Effexor.  Or the lack of Effexor, actually.

Effexor is a (mild) anti-depressant.  That’s not why I take it, however.

As a breast cancer survivor in full menopause (thanks to the removal of my ovaries) I am the Hot Flash Queen!  Can’t take Hormone Replacement Therapy (HRT), though.  Can’t use any homeopathic remedies like Wild Yam Cream, either.  To quote my gyno, “If it’s hormone-like enough to fool your body, it’s hormone-like enough to fool your body.” Meaning, those pesky cancer cells aren’t particular about actual hormones vs. synthetic hormones vs. wild yams.  They will eat them all and grow big and strong!

That’s where Effexor comes in.  It has some happy side effects:  mood regulation (hallelujah!) and the elimination of hot flashes.  Many breast cancer patients take it for relief from the special Hell that is menopause.  And I’ve been out for a couple of days now.

I’ve come to expect to have my emotions barely under wraps if I forget my meds for any period of time.  And the recurrence of those night sweats that are the bane of the menopausal woman.  They started up again last night.  Gah!  For some reason, though, I had an ah-ha moment this afternoon.  Could the chills, sore throat and general craptastic feeling also be symptoms of not having Effexor on board?

According to my pharmacist and Dr. Google, absolutely!  Check out this list of withdrawl symptoms:

Withdrawal symptoms were reported to include brief bursts of dizziness associated with headache, anxiety, irritability, agitation, insomnia, paresthesias, nausea, vomiting, diarrhea, tremor, fatigue, sweating, and worsening of depression (similar to symptoms reported after withdrawal from selective serotonin reuptake inhibitors).

Huh.  Whodathunk I’ve been going through withdrawl?

On the plus side, I’ve got meds back on board so I should be feeling better tomorrow.  🙂

The Bombs Bursting in Air…

Five years ago this week we found out that Danny would never see.  He was 9 weeks old.  I can remember the heartbreak and trauma like it was yesterday.  Here is an excerpt from the email we sent to our friends and family that day.

We discovered Daniel’s eye was very clouded over on Memorial Day.  We suspected a cataract.  It took us two weeks to get into the Pediatric Ophthalmologist – not that getting in sooner would have made a difference anyway.  She (the Dr.) took one look at his eyes & made an appointment for the next day at Children’s Hospital Los Angeles.  Things happened very fast after that. 

Wednesday found us at CHLA seeing Dr. Song who specializes in cataracts & glaucoma.  After about 5 minutes and a quickie ultrasound on his eyes he said he had tumors behind both eyes & casually threw out the words Retinal Blastoma.  Know that I about checked out right then & there.  Glaucoma & cataracts are one thing… cancer is another entirely.    Dr. Song ran down the hall & grabbed Dr. Murphree who specializes in  optical tumors.  Dr. Murphree and another doc plus a resident all spent a bit of time doing an u/s on his eyes & decided that they needed to have a CT Scan & do an Evaluation Under Anesthesia (EUA) the next day.  He had bilateral detached retinas & maybe tumors but he wasn’t sure. 

So, fast forward to the EUA.  Thankfully, in the middle of the procedure the social worker came out to ask more questions to see if this was caused by his prematurity and let us know it WAS NOT cancer.  Insert a universe-sized sigh of relief here.  Unfortunately he did have glaucoma, she says.  Back to the OR.  

So, here is the official diagnosis/prognosis.  Daniel is blind.  Can you hear our hearts breaking?  He has Norrie Disease, narrow-angle glaucoma & bilateral detached retinas.  He will never be able to see.  Norries also carries with it about a 50% chance that he will lose his hearing at some point & be developmentally disabled.  That is yet to be seen.  There is really nothing they can do to restore his vision.  They can, however, relieve some of the pressure from the glaucoma.  So, on Friday, June 24th we will go back to CHLA so they can remove the lens & scar tissue from his rt eye.    They will do the left eye later on.    Obviously our lives have changed drastically overnight.  We’re still reeling from the news.  We appreciate your prayers for strength & good care while we go thru the surgeries.  We know God has a special plan in mind for our little man. 

In rereading this email I’m struck by two things: my immersion in the facts of his situation to forestall the pain heading my way (a coping technique I still lean on heavily) and our faith in God’s master plan. We have come a long, long way since that day.  We’ve discovered that the developmental delays are overstated but the hearing loss associated with Norrie affects closer to 100% of the boys.  The Lord giveth and the Lord taketh away. 

Life with Danny is always full of surprises!  I took the boys to watch our local SLO Blues play baseball on Saturday night.  It was fireworks night.  I had Danny sitting on my lap for the show.  It was awesome!  Easily as brilliant as any 4th of July fireworks display I’ve ever seen only better because it was so very close.  I could feel the booming reverberate in Danny’s chest as I held him!  After the show he talked about the fireworks non-stop as he usually does when something excites him.  One of his comments, however, stopped me cold.  “What was the big lights and the big booms?  Was it the fireworks?”

“Big lights?”  What?! 

“Danny,” I asked him, “could you see the lights?”

I never got a straight answer from him.  He was way to absorbed in his own questions to answer any of mine.  But he does have some light perception so it’s not a big stretch to think he actually saw the bright explosions of light in the fireworks show.  Can you imagine how beyond thrilled I am?  Can you imagine what a pure joy it is to think that there is something in the world that my sightless son can see and that particular something just happens to be so spectacular?  To think he may actually be able to understand on some level the “rocket’s red glare” line from the National Anthem (his favorite song).  Oh, be still my heart!!!

I’m just saying that life is good!  I am so lucky to have a wonderfully happy, healthy 5 year old with more gifts than disabilities.  I wouldn’t trade him for the world… but feel free to make an offer anyway.  Ha!  I’m always open to negotiation!