Saturday, June 11, 2011

Shake, Rattle and Roll With It!


One of the most difficult things that I have found about dealing with all that is happening to our family (and I mean the cancer) is the frustration of having to watch Elisa go through it. The physical side effects of the drugs are difficult enough to deal with never mind the mental side effects that the diagnosis and exhaustion bring with them.

So the last thing that we were expecting (or needed) was another diagnosis of another disorder. And one would think that the odds would be on our side at this point.  But clearly someone thinks that we are really way too strong and that someone is looking to see how much we can really deal with. 'Cause guess what? Wait for it... Elisa has epilepsy!  "What the fuck?" you say! Well, I say it too. In fact, even the doctors say it. It is always fun to see doctors break their clinical composure.  Sorry that it is me writing again, but I think you may have guessed by now that Elisa is dealing with a lot and is not up to writing about it just yet. So you are stuck with me. So here is what has happened.

About two and a half weeks ago Elisa and I were enjoying a calm moment together sitting on the couch towards the end of the day.  I was in my last week of radiation treatment so had spent the majority of the day sleeping. We had been chatting about the Oprah episode we had just watched and Elisa got up to go to the bathroom. After about a minute, I heard the bathroom door slam and the trash can rattle. I called out to Elisa but there was no answer. I called again loudly and still nothing so I jumped up and rushed to the bathroom (very happy to live in a small apartment at that moment so that I didn't have more than 20 feet to travel). I found Elisa on the bathroom floor having a seizure. I still find it difficult not to start crying when I recall that moment. It is one of the most terrifying moments of my life. Luckily, I had read up on what to do just days before. Unfortunately, there is not a lot that one can do. So I cradled her head in my lap - making sure that she was turned on her side and held her. I called 911 and her mother.  Eileen was out buying some groceries for us and was near by. The seizure lasted for what seemed like an eternity, but in reality was about 3-4 minutes. When she started to come out of it she was very disoriented and was trying to stand up with great determination. So I carried her to the bed to lie down and tried to explain that she had had a seizure. This was very confusing to her.  She thought that I was confused and was talking about the seizure she had had in April. Elisa's mom arrived and then the paramedics were on the scene as well. So, again my wife was off to the hospital. They really should have a punch card for frequent visitors.  I think we would already be getting our free hospital stay by now if they did! And once again I was stuck not being able to be with her because my stupid cancer.

A few hours after being at the hospital, Elisa had a second seizure. This time she severely bit her tongue. The worst damage to a tongue her neurologist has ever seen. It still has the imprint of her teeth in it today. I am going to truncate the story of the hospital stay.  She was in the hospital for four days and I only got to visit her once briefly on my way home from my final radiation treatment so everything else is secondhand info. Elisa was under observation (via 24-EEG and 24-hour video monitoring) the whole time. The final out come is that she has Juvenile Primary Generalized Epilepsy. Juvenile refers to the age of onset.  Elisa had one seizure at 9 years old. The primary part means that she was born with it. Generalized refers to the fact the seizures do not originate from one spot in the brain; they fire from all over the brain. 

So why the flare up now?  Well, they believe that due to the chemotherapy combined with sleep deprivation, exhaustion, stress and perhaps some hormonal influences as well as the other medication she was on and off of that her threshold for seizures has been greatly reduced. So now she is in the process of having to slowly incorporate news drugs (as some of you may already know she was on anti-seizure meds due to the seizure she had in April - they have doubled the dosage but are gradually switching her to a new drug to alleviate the side effects that are rare but, of course, she is experiencing).  It also means new restrictions in her life until we are sure the new medications are working to control her epilepsy. Some of the restrictions include no baths for six months, no driving for six months, no swimming alone for six months, etc. It is a lot to add on to what she was already coping with. But may I just take a moment to say how amazing my wife is and how proud I am of her courage and in awe of her strength I am. She is as funny as ever! As feisty as ever! And as caring and giving as ever.  Of course, all this is not easy to deal with, and, of course, we curse about it and cry about it. But she handles it with such grace that most people would never know the burden she bears. She is a truly amazing woman.  Our sixth year wedding anniversary is this Sunday, but she has showed me a lifetime of courage and strength and laughter!

I would also like to mention and to thank a few more amazing people.  Elisa’s mom, Eileen, of course, for not leaving her side at the hospital for almost 2 days. Her incredible bosses Frank and Aaron who showed up at the emergency room within an hour and ran relays so that one of them could keep an eye on Elisa and grab Eileen who was trying to get cell service in front of the hospital and brought food to Eileen and Donna at midnight.  Her father, Al, and stepmother Lynda and "Aunts" Donna and Bonnie who also helped manage the emergency room nightmare.  Her wonderful friend Melanie for having her babysitter watch her three kids so she could sleep in a chair over night at the hospital with her. The amazing Betsy (the incredible photographer) who flew in to stay for four days - the first two being in the hospital sleeping on a skinny fold up mattress with all her luggage in tow since she took a cab straight from the airport. Maia, Lara and Rachelle for taking care of Sadie for those four days since I was too weak to do it. Our dear friend and neighbor Amanda for checking in on me everyday. Thank you also to Lorin who came to stay with me the first night, busted foot and all. Also, to all of the wonderful army of friends that called and sent messages and prayed and sent healing energy and good thoughts to help Elisa and myself get through those tough days. It seems the darker the day, the more light I see there is in our lives. Thank you all! We love you.

I have also added some new pictures of our darling Sadie to the slideshow. She is just such a remarkable little girl. She uses "please" and "thank you" and is even speaking short sentences in 3 languages! There are so many wonderful stories to share about her, but I have run out of steam.  The pictures will have to do for now. I will try to get some of the stories about her up here soon.

30 comments:

  1. Lots and lots of prayers from Colorado! Thank you for writing such beautiful updates in the midst of what you are going through. You guys have tremendous strength and inspire so many others who are struggling.
    CC

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  2. Thank God you have an army of friends and family to help you out!! God bless them!!!

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  3. I am praying for you Nathan and Elisa. I know God has healed you and made you whole. Receive that, believe that. You both will be here a long, long time for each other and Sadie. God bless you both and sending prayers and hugs to you all. I am so happy to know you have such caring family and friends. You both will come through this and a year from now we will all be laughing in the face of cancer and saying, see yah, bye,bye....don't ever come back!!!

    God is good and you both will be well! xo

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  4. God bless you and your family. Sending you a hug.

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  5. OMG! I am so sorry you guys are having to deal with so much shit. It really is unfair and I wish I could wave a magic wand and make it all go away for you, or at least transfer some of your problems over to me so you had less to sontent with.

    They say things come in threes, and based on that, lets agree you've had your share of crap, and now you'll come out the other end stronger people and with more friends than you had at the start.

    My thoughts are with you.

    Beverley Morley

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  6. My heart goes out to you. Thank you for sharing your story, it is so important. I am finishing my last chemo today and can't wait to see my 2.5 year old. Cancer sucks. Your family is strong!
    Http://mamacan.blogspot.com
    Sending lightness and healing. Alexis

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  7. Sending love from Los Angeles. I know good news is coming. It has to. Keep fighting and I am holding you all in the light.

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  8. Thank you for telling us, it can't be easy to keep going over things. I'm praying for you all every day, and now I'll pray for all your wonderful helpers, too, they really are angels.

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  9. Have a wonderful anniversary Elisa and Nathan! You are an inspiration. Much love and healing prayers!

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  10. You guys! I can't believe you have yet another issue to deal with. Praying that everything gets a lot better for both of you.

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  11. I have kept you guys in my prayers, and I will continue to do so. You both are an inspiration to us all and we all are thankful you are getting amazing help and support from friends and family! Happy Anniversary by the way! All my love.

    -Jill

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  12. I just read this and on the line where you said she has epilepsy, I literally said out loud "are you f-ing kidding me?" This is stupid, all your stupid diagnosis all the while you are just trying to get better--don't they know that?!? Anyways, I am hoping and praying for you guys, just get better and stop adding diagnosis to your lists (if only it were that easy?). ;)

    Happy Anniversary to you two, you both deserve a special day.

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  13. Happy Anniversary Nathan & Elisa. I'm so sorry to hear about the latest bad news (damn epilepsy), but you guys are incredible and dealing with it so well. You do have an amazing troop of friends & family. It's a reflection of what amazing people YOU guys are. And thank you for the new photos of Sadie, she grows more beautiful by the day. Stay strong.

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  14. sorry to hear of the latest diagnosis, but I have epilepsy and once you find the right med, its all ok. This stinks to have to deal with on top of all that you already have, but I pray it will resolve itself easily. I will keep you all in my thoughts and prayers.

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  15. Happy Anniversary to an amazing couple ~ may you share many more happy years together...

    I am so sorry to hear of your latest battle, not fair at all! Keeping you in our prayers -

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  16. I admire you guys as a couple, because thoughout everything you guys seem to keep strong by each other. The last thing you guys needed was another battle to struggle with. i will keep you guys in my prayers!!!

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  18. I read your blog on a regular basis. And I sit and cry every time. Thank you for living your story open and honestly, not that you really have much of choice I guess. I hope knowing that many people are praying for you brings you some peace and strength.

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  19. You are an amazing, strong, inspirational, loving, determined (and the list goes on and on) couple!! Thoughts and prayers for you both. Happy Anniversary!!

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  20. Congratulations on your sixth Anniversary. You are a wonderful example of a strong and loving marriage.

    The chemo, extreme stress, etc. etc. will challenge your immune system and you'll "get" whatever your body would ordinarily fight. So if, in the past, you were exposed to herpes, for example but your body successfully fought it, your body will no longer do that and you'll show up with herpes. Eat as healthily as you can, rest, rest, rest, and we are all praying for you both.

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  21. Congrats on your 6-year. But epilepsy? WTF indeed!
    Wish I were closer so we could help you (we started out married life in Bay Ridge! go figure...)
    Don't know why this is all happening, but am determined to pray you through all this.
    You have friends in Chicago!!

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  22. Happy anniversary!! I just cannot believe there's been something else thrown at you guys. You two, as always, will be in my prayers.

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  23. OMG, this can't be true ... I am speechless :-( I am keeping you in my thoughts!!!

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  24. You and your family are in my thoughts and I only hope that your strength and optimism get even stronger. You have friends in Madison!

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  25. Prayers & thoughts being sent from the Pittsburgh area. I can not believe that you both have to deal with another diagnose. You both get mad, scream because you both will feel a lot better. Just don't scare your little girl, who is so cute. God Bless! Hugs to you both. Melissa

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  26. Hello to the sweet Bond family,
    Your support of family and friends is a treasure. I feel more and more connected to your experience because of my own cancer experience, and life becomes about pure love, strength from God and the essence of why we are here, and where we are going. Basically all the crazy small shit in life doesn't even make a dent in my brain anymore. Love to your sweet family.
    Amy from California

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  27. My mom was diagnosed with the same exact cancer as you, Elisa. That was nine years ago. The doctors had given her 2 years to live. She is still going strong. She works full time and enjoys life 2 the fullest. Clear your mind, let the doctors do their thing and live! The love you give and receive will work miracles. I will be thinking about you!

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  28. Sending praying for you all from Texas. You have a remarkable family and a very special (and apparently brilliant!) little girl!

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  29. Your family and you have been through so much so soon. Nathan, please don't ever apologize for writing in the blog. You do a wonderful job and show so much feeling and sensitivity towards your adored wife and daughter. You are a wonderful guy who loves his family and it really shows. I pray that Elisa will respond well to the anti-seizure medicine, but I do know they can have some gnarly side-effects since I take them myself, but not for seizures, but neuropathy. Things have just got to get better for you and your loved ones. This has been unbearably hard on you all. Sending prayers your way. You truly do not deserve this, at all. Your pals, Vicki & Blazer (my poodle and best friend).

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  30. Another Pittsburgh Mama checking in with love. What the fuck, indeed. Hang in there guys. If there is anything you need, just put it on the blog. Sounds like you have an amazing support network. I pray everyday for you all.

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