Tuesday, January 25, 2011

January 25

The Clinical Center at NIH is beautiful.  It’s an enormous, spotless, bright, and cheerful building right on the NIH campus. When you walk in, the lobby is a large open space with towering ceilings.  Today a piano concert was held during lunchtime. It doesn’t feel like a hospital. It feels like a place you might want to work.  When I am in the Clinical Center, I don’t feel like a patient, I feel like a person who is helping to further important research. I feel like we are working together for the same cause – to find a cure for cancer.  To cure me.  Say what you will about government bureaucracy and red tape, both times we have been there have been the most impressively efficient medical experiences I’ve ever had. The tests run like clockwork, each department functions as one unit, and the people who work there recognize that you are a person with a serious medical need (or else you wouldn’t be there).  So far, it’s a really great experience.  I’m thankful to be part of such exciting research and I’m so very thankful to have the opportunity to receive this treatment.
We were at the Clinical Center for most of the day today.  First I had to get a CT scan of the area between my neck and my waist to allow the surgeons to more accurately access the difficulty of removing the tumor. The CT scan can see tumors more clearly than a PET scan, and can also detect tumors smaller than can be detected by a PET scan. The fabulous news is that the CT scan didn’t pick up any additional tumors.  My abdomen and lungs are clear.  It only detected the tumors in my liver and pancreas that we already know exist. The not-as-good news is that they’ve determined that they cannot do the surgery laparoscopicly because of where the tumor is located.  It’s not a huge deal, just means a slightly more difficult recovery.  We also learned that I need to be admitted tomorrow for the surgery on Thursday, so the rest of the day was a bit of a rush getting things together and tying up last-minute stuff at home (since I’ll be in the hospital for around 6 days, depending on recovery).  After getting the CT scan, we met with Dr. Schaub and Dr. Phan again and they briefly went over the details of the surgery. We then met with Dr. Hughes, my surgeon, who explained the procedure and what to expect in greater detail.  I told Dr. Hughes that I didn’t want to take narcotic pain medication because my system is extremely sensitive to it (makes me nauseous and dizzy). She very honestly and bluntly told me that I was going to be in a great deal of pain afterwards and that we would find some way to manage it (maybe an epidural).  Now, it’s been my experience that most doctors gloss over if something is going to be painful or not.  In my experience, most doctors don’t really mention it at all.  So, I’m not sure if I should be worried that she warned me in advance or if I should take it as a sign of respect.  As a signal that we are a team and she is going to tell it to me like it is.  I’ll choose the latter.  If it’s painful, so be it, this is the easy step afterall. 
We also found out that I cannot lift the baby for 6 weeks after the surgery for fear of hernia.  Six weeks is almost half the amount of time he has existed.  How can I not lift my baby for 6 weeks?? I can hold him and I can carry him, but I can’t lift him (for example, out of his crib or off his play mat). Someone will have to follow me around all day lifting the baby and giving him to me, for 6 weeks.  This seems ridiculous.  He is going to wonder why mommy turned so worthless all of a sudden. It is going to be very difficult to comply.  I know I have to, because the last thing we need is a hernia surgery between the liver surgery and the in-patient portion of the treatment, but it’s going to be very difficult. The other difficult thing is this: I have been worried this whole time about the baby being allowed to visit me in the hospital, but I am ashamed to say that it has never once, until today, occurred to me that the hospital is not the best place for a newborn. I was so focused on the regulations in place to protect me from getting sick during treatment and I completely lost focus on what would be healthiest for the baby. Clearly a newborn should not be hanging out in a hospital.  There are airborne illnesses, antibiotic-resistant airborne illnesses.  The hospital is filled with sick people, very sick people. Not only am I ashamed as a mother for not considering this sooner, I am also completely and utterly devastated about what this means. This means that during my surgery, I will not see my baby for 6 days.  Six days. I have never been away from him for more than a few hours.  The longest was last Friday when we went to Penn for the day, but even then we were home by 3:00.  Being apart from my baby for 6 whole days, 5 whole nights, is heartbreaking. I don’t know how I’m going to do it.  And this is just this time. For the in-patient treatment, it might be 3 weeks that we’re apart.  Three weeks is such a huge amount of time in his early lifetime!  He is not the same baby today that he was 3 weeks ago. He learns and grows every single day.  How can I possibly miss 3 weeks of my baby’s life?  I don’t care what the side-effects of the treatment are, being away from my baby will be the worst by far.  Because he’s the sweetest, most wonderful husband in the world, Jeff immediately bought me an electronic photo frame and filled it with pictures of Kai. I’ll have it next to me every second I’m awake.  I’ll see his disproportionately huge beautiful blue eyes and I’ll stay strong knowing that each day I’m away from him now could mean extra years I get to spend with him later. I just hope he doesn’t think I’ve left him.  He’s so young, too young to understand.  All he will know is that mommy isn’t there.  And that is the most heartbreaking aspect of the journey so far.
When I was getting my CT scan, there was a waiting area where everyone sits and waits after changing into CT-friendly paper pants. In that area was a man in a wheelchair, wearing a hospital gown, hooked up to an IV, who was clearly very sick.  He was probably in his 40s. He had his eyes closed and his head tilted back. Standing behind him was a woman, most likely his wife, with her arms resting on his shoulders, her head bowed towards the ground, and silent tears streaming uncontrollably down her cheeks. She was devastated. This was a man who she clearly loved very deeply and whatever fight he was fight was breaking her.  About 10 feet away from them were two women talking.  They were talking relatively loudly and were laughing and discussing their weekends. They were completely oblivious to the fact that 10 feet away from them one person was dying in body and another was dying in soul. I was called in to get my IV placed, and when I came back the man and the woman were gone. The fact that these two women could be so blind to such obvious human pain right next to them makes me wonder how often I am near someone’s pain and don’t notice.  Most people’s pain and sorrow isn’t as obvious as it was between this man and this woman, but how many times have I picked up on something being not quite right with someone I knew and not asked them about it. We all suffer.  We are all in pain.  All we have is each other. I vow now that I will be more open to recognizing and empathizing with the people around me. I will be there to support others as others so tremendously support me.
I am not scared about the surgery.  I am only scared that they will not be able to grow the new cells. Today, Dr. Phan said that the size of the tumor (between 3 and 4 cm) will be beneficial to the potential success of the new cells. I believe that they will grow.  I believe that the surgery on Thursday will go smoothly, the pain will be tolerable, my baby will not forget me, and the new cells will grow.  My posting tomorrow will be from inside the hospital.  I’m not sure everything that the surgery entails, but I will try to continue to write every day.
Today I am thankful for the depth of support being shown to us by our work family, personally and around work-related logistics; the efficiency of the Clinical Center and the peace of mind that gives me; the doctors who will be involved in removing my tumor (especially the anesthesiologist); my wonderful family and friends; and of course my fabulous husband and perfect baby boy.  I will miss you little one.  I hope you know I am not doing this by choice.

14 comments:

  1. Hi Jamie, I found your site through Sharron Doherty. Sharon and I used to work together many years ago.

    I just wanted you to know that there is hope. I'm very friendly with a woman in CA whose husband was dx with Stage 4 melanoma 2 years ago. He's exceeded the odds. I'm telling you this so you know there is hope.

    A cancer diagnosis is so frightening and such a new world. Please continue to write -- it's so cathartic and allows new folks, like myself, to be there for you and offer support. You will meet a ton of new friends from this experience and will realize how wonderful humanity truly is. As strange as this sounds, a cancer diagnosis truly offers some gifts -- some of which you've already experienced.

    My husband was diagnosed with brain cancer 2 years ago -- stage 4 as well. I just wanted you to know that I understand what you and your husband are experiencing.

    I will pray hard for you and your family.

    Jennifer

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  2. Jaime,

    It will be so hard to be away from your beautiful boy. And it will be hard not to pick him up for those weeks, but think about the fact that you will be there for him in 20 years!

    The women who seemed oblivious to the man in the wheelchair may been overwhelmed by his and his wife's pain. It is probable that they were too wrapped up in their own lives to realize what was going on around them, but I have come to realize a lot of people who are so engrossed in their own lives simply cannot handle the pain they see in someone else. Which is sad for them because it is in seeing that pain and acknowledging it that we are truly in community.

    My heart broke as I read what you wrote about this man and his wife. I find myself praying for two families of strangers (you and your family and that man and his family) as if you were long lost friends.

    Allow yourself to feel all of your emotions. Don't bury them in fear that you will lose your positive attitude. You can still be positive while acknowledge your other emotions.

    Godspeed my new blog friend,
    Lillian

    PS a friend of mine says to knew blog friends, "nice to blog meet you." In this case I say, "nice to blog meet you, wish it was under better circumstances."

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  3. Jamie,

    We have been following your blog since yesterday and have posted it on Facebook for our friends to follow as well.

    Your words are awe-inspiring and a wake-up-call of sorts.
    You are so right!
    How often do we miss the opportunity to make someone elses day or pain a little easier or a little less? Are we all a little too oblivious to others pains and needs?

    As a mom I want you to know that your little one will never hold it against you. He will love you unconditionally even in your brief absence and your bond will grow even stronger!

    You and your family are in our prayers nightly and inspiring our friends throughout Ohio who are following you as well.

    God Bless,

    Dalene and Chris P

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  4. Jamie, know that Kai knows your love and will feel your love even in your absence. It's temporary..seemingly endless...but temporary. Just focus on how WONDERFUL it will be after your 6-day hospital stay to hold him and kiss him again. Babies don't blame. And knowing he's in good hands should help you rest easy and focus on you.
    PS. Jen, thanks for your comments. They're reassuring, and appreciated. We're praying for you and your husband too!
    Love you and still praying
    Sharron

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  5. Jamie, You are so aware! All of the things you are seeing are incredible. How often we walk through life missing so much - emotions in other people, their stories and places. What a beautiful post.
    I miss you. I love you. I send you energy and light. I will be there with you tomorrow in every way in spirit!!! Keep focus, use your strong buddah training that we developed at Pitt (hey, if you can live with me for 3 years, you have developed a strong core, young one). The force be with you.
    Kai, what a wonder, your mom is so strong from her determination and will.

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  6. Well, if you can't lift Kai, that means you'll just have to hold him all the time ;) Missing him and limiting your ability to care for him will be tough, but you are absolutely right, it is not by choice. You are doing what is best for you and him right now and that makes you an awesome mom. In today's world of digital photos and video, I'm sure each of his days will be documented for you. Not quite the same as being there, but you won't miss it completely.

    It sounds like you have a wonderful place for your treatment. Keep up that positive attitude!

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  7. Someone will have to follow you around and hand you the baby? Come on, Jamie, that's one reason that God made grandmothers!!

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  8. I cry evertime I read this. I love you PPP. While you are recovering, I will come and lift Kai in and out of the crib for you as often as I can. Be strong tomorrow, I know you will beat this. - Renee

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  9. I'm sitting in the middle of my library trying not to cry as I read this. Take comfort in knowing that if Kai is anything like his parents or his Grandma, he'll understand. Maybe not now, but someday. I'll say it again: through how you are approaching this massive trial, you are single-handedly living the epitome of courage and redefining what that word means to me. You've already made the hard choice: how do I react. Our moms would probably be better at elaborating on the power of positive thinking (mine in particular loves to talk about the topic ad nauseum), but you know that you have good reason for hope. Not only have you been getting good news regarding the locality of the cancer, but you're young and you're tough as nails. You know what you're fighting for and that makes you infinitely stronger. You've made the hard choice and you're succeeding beyond anyone's wildest expectations. Godspeed tomorrow and we'll all be waiting for the good news of success. Tell the docs to punch the excised tumors repeatedly in the face for being so stupid as to mess with the likes of Jamie Troil Goldfarb. And take advantage of the hospital's junk food. Hospital pudding and Jell-O rocks. Btw, Jeff is the man.

    sending all my love,

    Andy

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  10. Jamie ~ I have told many people about you & they are also praying for you! I will continue to pray for you as you fight this fight. You have many people around you that will be all to happy to pick up Kai & will hand him to you. He will not suffer because you can't pick him up & you will be apart for 3 weeks. Your mommy heart will ache but he will be fine. When he is old enough you will be able to tell him about how hard you fought to be with him. Take care of yourself & allow your loved ones & friends to take care of you. This will be healing for them as well. Praying for you daily. Much love & warm (((HUGS))) coming your way.
    Debra

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  11. #1 your baby won't forget you and he understands more than you know; talk to him and reassure him that you need to be away a few days and on a basic level he will get this

    #2 so glad you are getting the care you deserve!

    #3 someone close to me told me this at a low moment and it's still true: Guilt is a useless emotion. Continue to focus on the positive!

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  12. Dear sweet Jamie,
    Every ounce of Kai's being will *always* know that you are the most wonderful person in his entire world... no offense Jeff :) Mommies rule!

    A few days apart may be easier if you picture Kai playing a childhood game. I'd like to think that in Kai's mind, those few days apart from you will seem like an extraordinary game of hide and seek, and the adults carrying him around to look for you just really really suck at seeking!
    Remember when you were little, that wonderful feeling of anticipation and excitement for both the hider and the seeker right before discovering each other? It makes me smile to think of the priceless joy you and Kai will feel when you get home from the hospital and "find" each other.

    You'll be home before you know it.
    Big hugs and lots of love, Judy

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  13. Jamie, your blog is so beautiful and so very much from the bottom of your heart. If I had a million million billion trillion nieces, YOU would still be my favorite! I have one suggestion, what if you had your laptop with you hooked up to a camera and Jeff likewise with Skype or something similar; then you could see baby Kai. It would remote, but still he could see and hear you and you could talk to him. Well, you've probably thought of this anyway all my love, Uncle Q.

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  14. Ditto on the skype plan! Keep writing Jamie. It's a wonderful reflection of who you are.

    -L

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