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.