Saturday, August 17, 2013

"Walker" this way...


This is what it's like when you haven't called a really good friend for far too long. You start thinking "well, I can't do it now. I don't have an hour to catch up," so you keep putting off. But each day you procrastinate you know the call is getting longer and longer.  So sorry again for this long hiatus.

My friend Marcos was here two weeks ago and insisted I write something on the blog.  I hope your are happy now mi mejor amigo.

Ok, now to what you've come here to see/read.  For the majority of the summer I have been feeling well but in the last 6 weeks I have had quite a few falls, dizzy spells, weakness in the legs, severe headaches and lack of stamina.   I can't walk by myself anywhere and I only have 1-2 hours of steam in the morning before I need my nap.  The most frustrating part is the of lack of stamina and mobility.  I had to give up public transportation, driving and now it's walking.  I mean, if I didn't have my family and friends I'd be a candidate for meals on wheels.

Speaking of wheels and transportation, a bunch of my friends have suggested get a Jazzy type of vehicle.  Since I can't drive, I don't trust that I wouldn't crash a small vehicle and especially one without   airbags.  A major part of the problem is balance which causes my falls.  A cane has been suggested but it doesn't address the stamina issue, so I have solution.  I need a walker that has a seat in it for when I get tired.  I live in multi-generational neighborhood so they quite ubiquitous.  But I want to be bold, dare I say, avant-garde.  I'm gonna PIMP my walker.  Oh, yeah!  You heard me!! I'll spray paint it, add stickers, a bell and streamers like I had with my first banana bike.  It'll be dope, yo! I'll post pictures.


So back to medical stuff.  I was due for some scans anyway but now there was an additional intention to discover why I was having the aforementioned symptoms that only seemed to worsen.  I had an EEG (to look for seizure activity),  I hadn't passed out during any of my falls and results confirmed that.  I had a Head CT, a Brain MRI and a PET scan.  The head CT looked normal and the PET scan looked great.  There was no sign of disease from my neck down including my spine.  Woohoo!  However, there was edema and progression of the LM lesions in the dura of my brain.  So my new oncologist, Dr. Jhaveri, did I mention that I LOVE HER,  decided on a plan she wants to start next week.  She conferred with many of her neuro-colleagues some who specialize in neuro-breast cancer at a Tumor Board they have on Fridays.  Brain lesions are incredibly small so in the body they would be considered steady and the rate they have grown since January but obviously in the compact space of the brain the ratio is very different.  The consensus by the board was that it wasn't just edema but true progression.  None of them had a clear cut answer on the next steps though.  A case like mine rarely exists so there is no data. Again, I'm patient x, of course.

Dr. Jhaveri also reached out to different research facilities to see if I qualified for any of their current trials.  At this point I do not fit the criteria of any of current ones because of the interventions I have had already but she said she is going to continue looking.

So here's the current plan:
No drugs intrathecally until they do a "slow study."  Essentially a dye will be administered into my ommiya reservoir very, very slowly to see if there are any areas that might have caused the leakage back in April, or are causing any of these new symptoms.  If all is clear, she may start the intrathecal again but with a different agent call thytiopia.   This is at least a few weeks from now.

Wednesday I will receive, through my chest mediport, an all inclusive chemo call Gemcitabine.  It's good for the whole body but it also crosses the brain blood barrier to attack the LM lesions in the brain.

Due to the leg weakness, stamina and balance issues, Jhaveri has prescribed a rather decent dosage of steroids.  I have to be careful though.  The last time I took an even lower dose of steroids, I thought I was Wonder Woman and cleaned all day.  It felt amazing until the next.  I was toast.  It's a totally fake strength.


I am sure that a lot of this sounds bad but in spirit I feel fantastic.  Sadie will be turning 14, uh, I mean, 4 in September.  A funnier, sweeter, bolder, smarter, more stubborn, stronger, person, I have never met. Everyone believes she is what keeps me going and it's true but not for the reasons one might think.  I love her, I like her, I am fascinated by her and I can become insanely frustrated with her.  She constantly challenges me to be a better person.  She is one of my greatest teachers.


Well, that's it for now.  Please pray or mediate or whatever you do for the JOY I feel, not the pain.  The JOY heals.

xo, E

45 comments:

  1. Thank you thank you thank you!!! You are always in my prayers - for you joy! I broke both legs - shattered really - in a fall while hiking in Death Valley last year, so I've had a long series of casts and boots and wheelchairs, walkers, knee walkers, crutches....well, you get the picture. And I have had every color and color combination of casts, crocheted cute cast covers, made yarn-bombed walkers, have every other bright and colorful thing I could think of to my wheelchair, added stickers, paint, whatever. It is totally fun and amazing and brightens up not only my day, but everyone who sees it!
    Have fun with pimp-your-ride and be CREATIVE! And keep listening to that most wise 4 year old teacher!

    ReplyDelete
  2. Thank you for updating us. I will and do hold you in the light. Check out Cathy Speck (Davis, California) and her pimped out ride (walker). She will give you ideas. She is very creative. Both of you give me great inspiration.

    ReplyDelete
  3. Praying for you and your family, Elisa! Your attitude inspires me.

    ReplyDelete
  4. Thank you so much for the update. I love your sense of humor!

    ReplyDelete
  5. Thank you for the update, Elisa! I feel happy to hear that you feel fantastic in spirit. That truth shines through in your post. I hope that you, Nathan and Sadie squeeze every last drop of delight and joy from these glorious summer days...from *every* day! Hope and prayers for successful treatment, strength and comfort coming from,
    Liz Moore, Princeton, NJ :o)

    ReplyDelete
  6. Ok, so onward and upward eh? All sounds very clinical, at least they have their finger on the pulse so to speak and sound like they know of what they speak. A thousand prayers hoping your joy continues. Fight on dear girl.
    Fay

    ReplyDelete
  7. Yes JOY! I am so glad you feel that. I was just singing Joy to the World this morning and I got stuck on REPEAT RESOUNDING JOY. I think I will make a sign with that phrase on it. I love your pimped out walker...awesome. Good thoughts and prayers your way Elisa! ♥

    ReplyDelete
  8. OMG! You Elisa, are a warrior like I have never witnessed, and an uberintelligent one. Your Joy shines through and if anyone can beat this monster it will be YOU! I send positive energy to you, your family and medical team daily. Joannne (socal)

    ReplyDelete
  9. Adore adore adore you, strong, brave, and JOYful, Elisa!!! Sending all the love in the world plus the hugest hugs imaginable your way!!! LOVE YOU! xoxo - Lauren

    ReplyDelete
  10. Prayers, Love and Hope being sent your way! I love the message from Lori above. Repeat Resounding Joy. I wish you joy over and over.

    ReplyDelete
  11. You are admirable!! I know I told you this a few time over the 4th of July but I truly do admire you, your strength, determination, will and amazingly upbeat outlook. I hope Nathan have you that huge hug and kiss sent from all of us yesterday.:-) positive thoughts and daily prayers sent to all of you xoxo

    ReplyDelete
  12. Elisa! What a joy to read these many lines from you! I keep checking on you frequently and Im glad to hear you feel good. And yes, pimp up your walker and make everyone in your street envious! xD I did so with my first wheelchair, and got many positive comments, even from strangeers. :) Positive vibes to you across the atlantic!

    ReplyDelete
  13. Love hearing from you, Elisa! You are an angel and I wish you and your beautiful family the very best!

    ReplyDelete
  14. I am in awe of your strength. I was diagnosed with myelofibrosis 12 years ago, given 10 years max, but am now in complete remission 12 years later. Life is strange with many twists & turns, seize the day. Positive vibes from Dublin to you all.

    ReplyDelete
  15. Oh Yay!!!!! A post from Elisa! Thank you so much for taking the time to write! .... I pray for your continued health, you and your family's peace and love for one another and for the determination and brilliant thinking of your medical team.
    As much joy as sweet little Sadie is giving you... I also think of all the lessons that you are teaching her: humor, tenacity, grace, the ability to rise above the situations thrown at you and keep going. You've taught so many of us too. ---I'm so grateful for your absolutely apparent love of life! I find it impossible to ever feel sorry for myself when I know that Elisa is out there... Kicking butt!
    I hope you, your husband and Sadie enjoy these days of summer... Sadie's 4th .... And a beautiful fall. Bountiful prayers of JOY coming to you! As I dance around my house to Three Dog Night's Joy to the World I'll do so in honor of you! It's a good dancing song! I bet Sadie would love it!!!! Can't help smiling when that song is playing! ..... Karen in Austin... ps... Can't wait to see the pictures of the crazy walker "Elisa style"!

    ReplyDelete
  16. You are a JOY! God bless you and of course I will be praying for you and your family and for more JOY and a true physical healing. The Bible says "Laughter is good like a medicine." Proverbs, sorry, can't recall which one now.....BUT it is true. I read that some guy with advanced cancer was given 2 months to live so he went out and bought Laurel and Hardy movies and spent his days sitting in his recliner, watching the movies, and laughing his ass off! That was four years ago and he he is NED. So keep joking and laughing and we will do all the praying and keep that faith going. You will make it!

    Liz xo

    ReplyDelete
  17. Sorry, for anyone who does not know NED means "No evidence of disease." xo

    ReplyDelete
  18. All good vibes being sent out to you - joyful, strength, creative pimping - all of them :)

    Maybe you can add those larger wheels to the walker (you know, ones with spokes so you can clothespin a playing card in there). Those would be cool and would pump you up higher than all the other walkers!

    Sending lots of love and persistence to you (and your beautiful family).
    From Upstate NY (like waaaayyy Upstate)

    ReplyDelete
  19. You have given me a timely reminder that life is all about the JOY and the SPIRIT.
    You are an inspiration to so many people around the world! Love and Joy to you and your whole family. xoxoxox Geraldine, Spain.

    ReplyDelete
  20. Wow, truer words were never spoken as in those last two sentences. God bless you all (or the universe or whatever life-force you believe in :) )

    ReplyDelete
  21. Your messages always make me laugh!!!! Sadie may be your greatest teacher but I am thinking you are the greatest teacher to many who are following your journey..pimp your ride homegirl and please post a pic of your streamers & paint job! thanks for the update and as always, keeping images of you & Nathan at Sadie's wedding firmly implanted in my internal memory card...

    ReplyDelete
  22. Hi Elise just sending good thoughts and wishing Sadie a happy birthday.

    ReplyDelete
  23. Wishing you more love and joy.

    Carol ( UK)

    ReplyDelete
  24. Elisa, it is apure JOY to hear from you. I check often if not daily as I have done from the very first day. You continually amaze with your inner beauty and strength. You do whatever you need to do to be mobile. Life is for the living and you are proof that no matter what it is indeed meant to be lived. I know that Sadie must be a total riot right about now and if anything is gonna get you thru, it will be her. Continue to stay strong and I will continue to pray for you. Promise!

    :) Chrisie

    ReplyDelete
  25. Reading, praying, praising and "you go girl-ing"! Wonderful update and lots to be happy about! I have no doubt you will pimp that walker like no other.

    ReplyDelete
  26. Joy, joy, JOY!! So happy to hear from you. Keep loving that little girl and living LIFE!! Can't wait to see your pimped-out walker!! You and yours are always in my thoughts and prayers. Love from Oklahoma.

    ReplyDelete
  27. "Walker" This Way?????!!!!!! Hahahaha!!!!!!!!!!!
    Gobs o' love to all of you,

    Judith & Rory

    ReplyDelete
  28. Yes indeed, Joy heals! Agreed there.

    ReplyDelete
  29. Thanks so much for the update. I chose to imagine that you weren't blogging because you were too busy being healthy and active. I am sorry to hear that what I imagined isn't entirely true but I'm glad to know that you are still being your FIERCE self and are enjoying your darling daughter ... even when you're not enjoying her so much ... LOL.

    I'm not a religious person but I send all my hopes and wishes for health and happiness out into the ether for your family and I hope it helps somehow.

    ReplyDelete
  30. I love you Elisa! I'm happy you love your oncologist she sounds wonderful. It is true our children are always teaching us. I will pray for joy and gratitude for you and me. Walkers are awesome you can attach a cute basket on the front and put your stuff in it, books, juice, lip gloss so you can fit more trips into one trip.

    ReplyDelete
  31. Love you Elisa! Get a flat piece of cardboard, or plywood is even better as it has a roughness to the surface. Place that on the bottom of the basket so stuff doesn't tip on the wires. Re. the seat - I never met one that was actually wide enough. Ugh!
    Karen from Long Island

    ReplyDelete
  32. we keep on praying for you!!!

    ReplyDelete
  33. you are AMAZING!!
    i check your blog often and, like many, was worried when there were no entries over the last few months.
    thank you for your update.
    you and your family are in my thoughts and prayers.

    ReplyDelete
  34. All good thoughts going out to you, joy and all!

    ReplyDelete
  35. keep up the strength. You can do it. Prayers your way.

    ReplyDelete
  36. You are super strong Elisa and kicking cancer's ass. Enjoy your precious little girl - it is amazing how fast they grow!!

    ReplyDelete
  37. DIE PLEASE you like to beg like a beggar to treat your illness die like the theync.com a sick family of three with a sick and an sad child named sadie must be sad all fucking pathetic fucks of 3

    ReplyDelete
  38. Please remove above post from September 18. Prayers and happy thoughts your way from Brooklyn, NY.

    ReplyDelete
  39. Prayers from the ATL! Your positive attitude is an inspiration, fight on!

    ReplyDelete
  40. Just was thinking about you, Elisa. How's that walker coming along? Wishing you all the Joy you deserve!

    ReplyDelete
  41. Lots of Love, Prayers and Good Wishes..All the way from India!
    Stay good..Stay healthy.

    ReplyDelete
  42. Do not give up there is still some dreams left for the unforgivable destiny let god know that he cannnot harm you completely let god know that he did not tear up a happy family completely let god know that he did not win completely let god know that he is nothing great than a piece of trash

    ReplyDelete
  43. Just wanted to offer my love and support. ALL of it each and everyday.

    ReplyDelete
  44. Your blog name familybondingtime itself looks impressive..this makes everyone to look after your blog..

    bonds

    ReplyDelete
  45. Elisa, I was actually reading through a few of your posts and just had a quick question about your blog. I couldn't find any contact info and was hoping you could email me back when you get the chance, thanks~

    Emily

    ReplyDelete