I am amazed at how the curves at the speed of life can get tossed at one.
Friday: Five of my 16 electrodes were not giving me sound. No explanation other than it happens.
No worries, I have 12 left, I can live with eight as a bare minimum, I am told by other cochlear implant buddies.
The kind souls that lend me advice with comfort are correct that having the brain comprehend 8 electrodes will be fine.
Saturday: Still a little distraught at the possibility that more damage than anticipated was done in my medical implosion of 07, I struggled throughout the day to fight depression, and rid me of nasty thoughts that my cochlear implant may not work for me. It appears to be fading one electrode at a time. I think too much. It is my curse in life. I live with the "what if " syndrome constantly.
Sunday: I am barely up off the mat of depressing thoughts, and working good thoughts into my world, when Janet develops pain in one leg that knock her off her feet. Out of no where she is back in bed all day, unable to move in pain. Memories of her blood cancer come flooding back.
Monday: Day starts good for both, and we enjoy our morning tea and garden walkabout.
After about 10 steps, Janet can't go further. We know not from what. We go to medical walk in clinic thinking blood clots. Doctor wants X-Rays right away. We comply.
Tuesday: Janet feels a bit stronger and we walk a little. Life seems good. As we gather our positive thoughts after rising, Sunnybrook (my cochlear clinic) telephones, and announces I will go bilateral. I will get a second cochlear implant on my right side that will give me in effect stereo. Elated, and as giddy as a school boy, I post the news to the world, alert friends and family and do a happy dance. I am very fortunate.
News barely digested when Janet is collapsed in pain back in bed. The pain has now spread to her second leg. Confused and distressed we wait for 3 pm doctors appointment for him to have a look. Problem is the ultra sound results will not be ready x-rays will be ready.
Other problem as we see it, is GP knows very little about Luekemia, and even smaller knowledge of graft vs. host, the medical term for pain caused by the fighting that goes on when stem cell from Janet's brother (graft) have tussles with Janet's system (host). It is extremely complex and very few specialist know what GVH can look like.
I decide to email her oncologist. Dr. Minden. Minden also happens to be Canada's eminent Leukemia and Lymphoma specialist.
Believe it or not he always responds in minutes to all our emails over the years.
As per usual he responds in 4 minutes : "Come in Thursday morning".
It is downtown and a three hour return trip. But we need to figure this out. Still no results on X-Ray to have answers yet.
Today: Medical center calls with X-Ray report on Janet: Osteoarthritis in the knee.
I E-Mail her oncologist and advise. NO need to drive for an hour and a half to see him now we know what it is.
However, pain so bad today that leaving bed to just go to washroom is beyond belief and barely in the realm of tolerable.
Cancel any thoughts of leaving house as she is incapable of walking.
I turn to Google to find out what pain management is possible. I have to take into consideration what pain medication she cannot take, being a stem cell transplant patient.
E-Mail to her Oncologist and he advised Advil or Asprin is fine for her. Off to drug store for topical analgesic rubs, and lots of Advil to give her some relief.
I thank God that this amazing oncologist carries his blackberry on rounds.
She has been in bed now twenty hours, and yet still sleeps.
I share this with you as I thought about the roller coaster in my life the past few months.
Great news - Cochlear implant.
Bad news - Balance problems, terrible fall.
Great news - Getting stronger. Cochlear activated.
Bad news - Pain worsens in arms and shoulders.
Great news - Pain retreating;
Bad news - Cochlear electrodes failing me.
Bad news - New pain with Janet;
Great news - approved for second cochlear implant.
Bad news - Janet's new diagnosed osteoarthritis.
Why on Gods green earth does it have to even out?
It seems for every good there has to be a bad! I've had enough bad, I want a string of good. I need a run of good, good, good, good, good! Then toss me a bad. But make it a unusually long line at Fourbucks, or something like that "bad".
This is not going to be a poor David Post, it is just I get tired of good things followed by bad things. Is it a universal law?
I want to be so excited about going bilateral in less than two weeks. I will probably be activated in six weeks. I want to dance a jig, listen to my symphony of life with two sets of CI's firing like I'm in the band.
Instead I retreat into the fuzzy and gray world of medical web sites. All too familiar places where I have spent far too much of my life.
"Suck it up man, figure this one out as well" I scold myself.
We have been through a lot worse than this.
I just look up at the sky at night, find a certain point or cluster of stars and say under my breath,
"Thank you for a healthy, happy and wonderful fourteen year old boy"
Great News: Dan the man starts Rock Camp on Monday! Guitar boy and 39 other rockers under one roof.
Life is OK!
Warmest,
David
23 comments:
Oh David,
Sorry to hear about all your troubles - I read your posts on the Hearing Journey. It is great news about the other CI but I think you have been bumped up because of the problems with the electrodes in the one you have. It is great that Sunnybrook is doing this for you. Hang in there. I sincerely hope everything turns out good for you.
Hugs,
Iris (in Pickering ON)
David,
Won't even TRY to say suck it up cuz I think it would be more helpful to curl up in a ball and pray it all gets better. Of course, you WON'T do that and you WILL carry on. Cuz that's what makes you, you. Strong and capable even in face of crappy adversity.
Halie
Here's hoping your list fills up with greats, or at least OKs or tolerables instead of bads.
Rock Camp! Dan is so lucky! My older son wrote his senior project essay on how music changed his life.
One of my favorite things about reading your blog is that you have such a positve outlook on life. You always manage to find something good when bad things happen and I think that is what helps you deal with all that your family has been through. Life can be so unfair at times I think it's always good to stay positive, nothing good ever comes from wallowing in self-pity. I wish we all could be as strong as you and Janet.
I will be keeping you all in my thoughts and prayers, I really hope Janet gets some relief, Lord knows she deserves it.
Keeping you in my thoughts and prayers as we cycle through another episode of bad, bad, bad, sorta good, a little better, not so good, meh...
Take care David and Janet---so many of us out here are pulling for your recovery ;))
I am so sorry David. I have been offline waiting 10 days for att to set up my internet.
Remember have faith in all situations. I know it can be overwhelming, but I do believe prayer and faith will carry your family through.
In my heart and prayers,
Valerie
BALANCE... it's all about balance. Balancing the good with the bad... shit happens and we have to accept that if it doesn't kill you, it has to have taught you something... and knowledge is power and good for you. I too have spent hours on the net lately reading about blood clots/medications Vs. Hemorrhage after surgery problems!!! I have had both and it is all a BALANCING act to get it right .... I hope you can balance out your medical woes and rise above them, just as I am trying to do. HAVE A GREAT WEEKEND, OR AT LEAST TRY.
I have decided that someone out there is trying to keep me humble. Apparently I got a little too big for my britches or some such. So I have been getting doses of "there that will show you." And whenever I seem to think I am in the clear and I start getting smug...BOOM. I get hit with something else. I just keep thinking one of these days something REALLY good is going to happen to balance out all this crap!
I hope Janet gets to feeling better. It must be very scary to have something like that happen considering what she has recently gone through.
David, Janet and Dan:
You have all been through so much that it just makes me want to scream for you: "PPPOG."
The old saying of *when one door closes, another one opens* will sound so ridiculous for your family going through your revolving door life at this time.
My prayers and good wishes to all of you.
Bear((( )))
PPPOG
Keep your chin up.
Cory asked about the slash hat today... I had asked him way back when about finding one and he had given up and happened to think about it today when he got home so I showed him ... Kudos to you guys from Cory !
It seems to me that without the crappy moments in life we would not truely appreciate the fantastic ones... but like you I do believe I could use a bit less of the crappy ones...
hugs to ya! and extra thoughts and prayers for Janet and hopefully some pain management...
and COOL Dan keep that music up !!!
hugs Laura
Sympathies for the bad things, congratulations for the good.
Your ship is ploughing through stormy waters at present and I hope that good weather and calm waters lie ahead. It is no less than you deserve.
All good wishes to you and your family.
It's quite admirable, in my opinion, that you can cap this post with a heartfelt "Life is OK"! You've had quite a ride this week! Sometimes, I suppose, OK is the best we can hope for, and there's certainly nothing wrong with OK.
I hope your wife experiences some reliefe from the pain soon!
Some times life is more of a bitch than other times. This seems to be one of those times. Hope your wife feels better very soon.
You are certainly on the rollercoaster of life. I am so sorry that so many dreaded uphill climbs are in your path right now.
You amaze me in your ability to focus on the downhill thrills instead. Dan's rock camp sounds awesome - he is sure to have a wonderful time!
And it is a relief that Janet's pain stems from osteoarthritis, (although I am unsure of why she suffers so very much pain with it...I have it in my knees also, but not with that much pain...but then, I take 400mg of ibuprofin each morning, and sometimes more at night.)
There are times when a person just wants to shout, STOP THE WORLD, I WANNA GET OFF!!! but life doesn't work that way.
You, my friend, do an amazing job fighting off depression.
I don't have any other words of wisdom other than "hang in there, you are doing such a terrific job at being strong." Good thoughts heading your way.
There is always someone who has it a lot better and someone else who has it a lot worse.
But I think you are justified in feeling what you're feeling. I am really sorry to hear of your and Janet's recent troubles. But I think you are right on in celebrating the good things. And you have the right to feel bad about the bad ones.
My best as always.
Life *is* okay, but you've the right to feel a little beat up from the obstacle course that you and Janet have been on these past few years. I can relate to how you're feeling because I feel that way now and then too. I always tell myself to just allow the feelings their course as it is all certainly a process.
I've been absent from my favorite bloggers and didn't realize that you were going bilateral baby!
Word!
Oh, I forgot to mention that Ethan also had intermittant failure of 5 electrodes on the array. Cochlear had no idea what was going on or why. Within a few weeks it was back to normal and has been ever since. That was over a year ago. So there is hope!
David, I've heard that we must have the downs to enjoys the ups... but why does there have to be SO MANY downs? I am so happy for you about the bilateral implant, and my thoughts are with you and Janet as she deals with Osteoarthritis. Good luck for Dan!!
Hugs to you and your lovely family. Sometimes the negative distracts us from our focus on the positive. You aren't alone in that struggle.
it's Sunday nite...just stopping by because I was thinking of you. Hope you had a nice weekend and a new week full of wonderful surprises ;)
Trust me. This post speaks to me on levels beyond the flesh. Bone deep. ** hugs **
David,
I hope all is well with you. While I'm happy you're going bilateral, I'm so sorry to hear about Janet's challenges. I hope that you've a streak of excellent news headed your way!
In the meantime, I've got an award for you waiting on my site. Check the Saturday post!
Best Wishes!
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