Monday, September 5, 2011

THE CALM BEFORE THE STORM

Let me just explain right at the start that what I am about to say (whine, bitch, complain about) in no way changes my gratitude for all that I have nor does it change my positive outlook on my life. It’s just that, although my intellect and spirit can see all that I am blessed with, my emotions have just stuck their fingers in their ears, closed their eyes and gone “lalalalalalalalalala” in the corner. It isn’t listening to all the good news. So let’s review the good news first to see if that helps.

I am finally starting to feel less pain post surgery. It has taken 6 weeks but I am finally turning a corner physically. Elisa is having a much easier time dealing with the chemo each week now that they stopped giving her carboplatin. Her blood counts have been staying up, and she is even growing hair back! Sadie is as amazing as ever. She is talking in little but complete sentences. She is 36” tall and 30lbs of muscle. She can lift just about anything she wants. Her laugh is even louder and more delicious than ever. She is super cuddly with mommy and very gentle around daddy’s boo-boo. Sadie and I have breakfast together every morning again. We sit on the couch together and share a piece of toast over while watching Elmo or Barney. I have spent quality time with more of Elisa’s college friends that have come to help (they really are about the nicest group of women you could ever hope to meet). I have also been able to see many of my friends including my brother and sister-in-law as they stayed with us to help. My surgery went very well. I was on the operating table for a shorter than normal time expected - only 3 1/2 hours. Eighty percent of the tumor had responded to the chemo and radiation treatments so they only had remove the remaining twenty percent. Dr. Matin Weiser is really quite an incredible surgeon, and very nice too. I was out of the hospital in record time. We have continued to receive so many wonderfully kind and heart warming e-mails from all over. Quite honestly, I could go on for quite a while about how many gifts there are in my life, and I have. I do. Over and over.

My emotions just don’t give a shit. They are all over the place. They are favoring the darker more sorrowful side. It has made writing and talking to people about what is going on difficult. It is hard to not want to be or feel the need to be happy around those that you love and want so badly for you to feel better. It is difficult to no be able to do this to pull myself out of the funk. I keep feeling the weight of the year, the weight of the cancer, of my cancer, of Elisa’s cancer, of Sadie’s parents having cancer. In the beginning, it was almost easier to deal with. Things were bad, but they were busy. Everyday was a new test, a new doctor, new news, more information to think of and to process. It kept the mind and body occupied. You are sprinting at the beginning. Here’s the thing, Elisa warned me “it’s not a sprint, it’s a marathon.” Plus with Elisa’s type of cancer, there is no finish line. They will never refer to HER2 positive metastatic cancer as in reemission. She will have treatment for years. I have just hit that wall (all you runners out there know what I mean). It has been almost a year for me and I can count on one hand the number of days that I have actually felt physically well. It has worn me out. I am also admittedly not a fan of having shit continuously pour out of a hole in my abdomen into a poorly designed plastic bag. On Friday, August 25, I will be starting chemo again. I get to add a second object hanging off me, my 48 infusion bottle of chemo. I worry about what all this is doing to Sadie. She is so aware and tuned into her surroundings. She feels and senses everything. The first thing she says in the morning is “Daddy, shirt on!” She wants me to cover up my “boo-boo bag.” But it isn’t because she doesn’t want to see it. Heck she asks to see it all throughout the day and laughs when I show it to her. I think she senses my embarrassment about it. She also likes that she skinned her knee and has a boo-boo too. I think she wants to have what mommy and daddy have. Ever since she scraped her knee she likes to point out all of our injuries in turn, mommy’s then daddy’s then her own. It’s amazing and heart breaking. But perhaps this just means that she will grow up to be a caring, empathetic person who wants to help others. Maybe she will cure cancer because of all this. I just wish she could learn the lesson in a different way. It’s a hard lesson. The day to day grind of it....it’s relentless. It’s the bad sleep and crazy dreams from the pain medicine. It’s the 2 times during the night that you have to stumble out of bed to try and empty an over full bag of shit without getting it all over the place. It’s the limited diet that you can eat, again. It’s the not being able to help out around the house, or pick up your baby when she is crying at night. It is all the little things. It doesn’t let up. That is what is so hard about the cancer for me. It is as if a friend of a friend needed place to crash for the night but then moved in without asking, ate all food, never cleaned, used your toothbrush and then used the toothbrush you bought to replace the first toothbrush. However, it will get better. It is getting better. It really has to.

But let me end on some good news. It was six weeks that I wasn’t allowed to pick up my daughter do to the surgery. Sadly, she just stopped asking after the first week and that killed me, but I am cleared to pick her up now. It’s a very bright spot in my day, getting to hold her when she comes home from daycare.

This was the post I was going to post about three weeks ago. See the next post to understand why it all went to hell.

-Nathan
PS-I don't mean to create a cliffhanger but since blogs are read "backwards" I want everyone to get a chance to digest this chapter before moving on. We'll post again at the end of this week or next weekend.

29 comments:

  1. I don't pretend to have adequate words, but we're praying for you. More importantly...just kind of hoping life lets the hell up on you guys.

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  2. Nathan,
    I don't know anyone who would go through what you guys are going through without having moments where they get upset, frustrated or feel sorry for themselves. You're only human! Cut yourself a little slack ;-) You have handled all of this incredibly well. Hang in there, you have so many people praying for you.

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  3. I cannot even begin to imagine what you all are going through. Be gentle with yourself as you go through this healing process. This. too, shall pass.

    All prayers and blessings sent your way.

    Lisa in Maryland

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  4. I can't pretend to even begin to know what you're going through, but I think both you & Elisa have handled this with such grace, far better than others may have. You have come so far, I have no doubt that you can see the light at the end of the tunnel (at least I hope you can). Don't be too hard on yourself; instead be proud of yourself and all that you have dealt with.

    I wish you peace and strength going forward.

    --Rhonda

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  5. praying for you all...and hating that that's all i am equipped to do.

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  6. I have seen this in my best friend and my son's best friend who had cancer. Every day was a new normal. Nathan, you are processing this feelings daily and I am so glad you are willing to share them with us. I have been following your story from day one and have been waiting for this type of feeling to emerge and be written about. It is all normal and just a new normal. Is there hope that the bag will be gone and your body will be reconstructed so that a bag is no longer needed? Focus on all the good things and let the bad things float in and out. If it gets too bad try asking for a medical aid (anti-depressant). It had really helped my friend. It can be used temporarily. I am amazed that you are able to express your beautiful and not so beautiful emotions. I wish for you and Elisa a long, happy life and that you have seen the worse and now can move forward to your new normal.

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  7. I pray for you and your family every day. I can not imagine what you are going through, but do know that Sadie will not remember all of this. This will be something that she might have a vague memory of later in life. Just try and stay strong and realize that this to shall pass. Keep fighting and know that you and Elisa have so many people praying for you both. You both are such an inspiration to me!!

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  8. Thank you for the post and I'm simply sorry you have to go through this. I can understand your worry about how this may affect Sadie, but I think you hit the nail on the head. She's already showing an amazing empathy and I'm sure she will be caring and loving with all she does. I have a pair of cousins, siblings, who kind of illustrate this. The older is a man who was born with cerebral palsy, so bad that he's just confined to his bed with an array of medical equipment constantly surrounding him. His little sister was born when he was 7 years old, and all she knew of her brother and her home was that situation. She endured having to explain her brother's condition to her little friends, most of whom were scared of him because he made noises and looked so different. Today, she is a confident, caring, and very empathetic young woman. I know the situations are very different, but your view of Sadie as an empathetic child made me think of it. I think of your family often. Keep healing.

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  9. I agree with the others.....to be gentle with yourself....allow yourself to feel what you feel. I think it was Churchill who said something like "If you're going through hell, keep going." You'll get out of it and emerge fully into the sunshine. While you're going through all this, Sadie is there to constantly remind you of that sunshine. I pray for you three constantly. Keep the faith. --from Orange county, NY

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  10. I wish words were enough. I think of your family all the time and hope with everything in me that you both feel better soon. All my best to adorable Sadie and her incredible parents.

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  11. Just wanted the Bond's to know that our family continues to keep you in our thoughts and prayers.

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  12. Wow, I wrote a lot here and pushed the wrong button and viola, it all vanished.

    You have every right to feel as you do. You have been through more than most people go through in a lifetime.

    I am praying for you and yours and sending hugs out to the three of you! I believe God will heal you and Elisa! God is so good and loving. God bless you all!

    Keeping the faith and prayers out here in Virginia! ((((((((((HUGS))))))))))

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  13. I cant begin to understand how you guys are feeling but I continuously keep your family in my prayers. you have touched many lives & made me personally realize to not take things for granted & to love my little girl for you never know what may be around the corner.

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  14. Thank you for sharing the good and the ugly. Cancer is so hard to deal with. I have been in the game for 2.5 years. I too have a colostomy and that adjustment has been rough. My almost 3 year old has only known me as having some pain or sickness. I send healing thoughts to you both and I hope you know you're not alone. Http://mamacan.blogspot.com. Alexis

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  15. I cannot imagine what you are going through. Anyone who says they can is full of it. My family will continue to pray for all of you!

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  16. I am so glad to see a new post!

    My thoughts and prayers are with you and your wife and of course your sweet daughter! The kids are what makes the hard days worth it! I know!!

    (((hugs))) and prayers!

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  17. There are no words. I was however thinking that the slight silver lining for Sadie may be that she’s getting to spend so much more time with you than she would have otherwise been if you had been out making a living and providing for her or healthy. This is by no means saying this is a good thing but while you worry about lovely Sadie, perhaps all she’ll remember is you being present and loving her? I think that she’s just young enough that the breakfasts in the morning together are going to affect her more than watching the boo-boo. The Serenity Prayer works in this case too...please try to accept the things you cannot change ( like this temorary time of healing) but fight to change the things you can. You’ll get through this, we are all praying for your family.

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  18. Elisa and Nathan, Please know that I haven't the words to adequately express how profoundly you two have influenced my life. Your courage, kindness, beautiful natures, loving attitudes, and incredible strength, not to mention your perceptive, punchy, incisive writing amazes and inspires me. I know I'm a stranger but think of you two and your lovely Sadie all the time. As many others have written, I cannot begin to imagine what you are going through but I do know this: Sadie is truly blessed to have you both for parents. You are both extraordinary people dealing with unbelievable circumstances with unparalleled grace. Sending loving, healing thoughts your way...always. Jessica in Italy

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  19. One more thing, Elisa and Nathan, my husband Steve Ursell is, of course, also wishing you well. I am just very technically inept and don't know how to sign in as myself instead of with his name which is why the above post has his name but is signed by me: Jessica in Italy. (Sorry for any confusion this may have caused.)

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  20. Ask your Dr. about irrigation, see if that's an option for you. If so, it will reduce your dealing with the pouch to once a day - usually. I know exactly what you're personally are dealing with, and I have all the compassion I can possibly express for you. Been 12 years for me and it's never truly easy, tho it is, most of the time, routine. Turn to a support group, they can be terrific. Convatec is always ready to answer any questions, so I imagine are other pouch makers. The anger will ease, eventually. Just don't be too proud to reach out.

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  21. I am praying for all 3 of you…you, Elisa and Sadie. I appreciate your honesty more than you could ever imagine. I often think everyone else's lives are "so great" and mine is not. When I read your words, it helps me realize that no-one's life is perfect. this probably doesn't make a lot of sense, but I want you to know I appreciate your honesty and I admire the hell out of your bravery. thank you Nathan.

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  22. Thank you for your honest post. I miss you guys and think of you often, I relate to all the changes cancer has brought into your life, cancer changed my life too... I guess life sometimes changes to a different normal. Love to you all, thanks for sharing your human experience it helps others and me understand ourselves and our human challenges better.

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  23. I feel so sad that there is this need to try and feel upbeat for everyone who is trying to help you guys. How emotionally and physically draining that would be on top of the emotional and physical drain of actually dealing with the illness.

    I thank you for being so frank and sharing with us. I know it's hard. We are all strangers and I know that I have no idea how you are feeling or handling your day to day life, but I can feel empathy and send you positive thoughts and prayers.

    Just know you are in a lot of our thoughts and we don't expect you to be all sunshine and roses when you post here. I would like to think of your blog as an outlet. Someplace you can go to just let things out where they can have their own life and stop weighing you down.

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  24. I hate to hear that things get worse:( You definitely have every right to be pissed and vent as much as you want as well as let people to know you are thankful. Your family is going through a multitude of thoughts, feelings, emotions as well as physical ailments. You're a parent, of course you're wondering what all of this is doing to Sadie, but you are good parents, you are there as much as you can be and even though you want to be there for her emotionally and physically, that in itself is demanding, much less with everything else you're dealing with. I sure hope things start looking up for you.

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  25. Thank you for being honest. You make me understand that it is normal to have these feelings. Waking up and being grateful that life has been sustained, also wondering if this is how things will be and for how long. I admire your honesty and will continue to keep your precious family lifted up in prayer. Maliaka

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  26. I, too, wish I could understand what you are feeling and how this must be affecting you. Just please understand that you are on my mind every day and it seems like I will keep checking your blog daily and there is nothing and when I return there are several updates. I wish my timing was better. Sending prayers to you and your family. Love, Blazer & Mom, Vicki

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  27. Thinking of you and Elisa and Sadie alot Nathan. Much love, care and prayer coming your way.

    Namaste
    Mim
    New Zealand

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  28. My husband has an ileostomy and he is so frustrated by it, I'm sorry you are dealing with all of its frustrations as well....if you ever need any advice with it, or just want to gripe with someone else dealing with one, feel free to email us.....message me on my blog and I will give it to you.
    I can't even begin to imagine how you guys deal with each and every day...you are amazing inspiring people!

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  29. family first opposes the introduction of any emissions trading scheme or 'carbon tax' and believes it would be grossly irresponsible to proceed with such a policy that will involve major changes to the Australian economy without first having a proper, independent enquiry eg a Royal Commission, which was prepared to listen to the many distinguished scientists who disagree with the current 'climate change doctine'.

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