Friday, January 28, 2011

January 28

I’m home! What a wonderful place to be.  I washed the hospital off of me and snuggled my baby for hours.  Now I have 5 whole days at home until I go back for the IL-2 treatment. I will treasure every minute of it. Once I start the IL-2 (Friday morning), I am going to feel terrible until after I recover from the second round (about a month).  So from now until Thursday, when I go back to the Clinical Center, is going to be the best I feel for some time. If I were a runner I would go out and run as far as I possibly could, knowing it might be the last time I would be able to do so for a while. But since I’m not a runner, I’ll probably eat ice cream and watch cable. I came home to a stack of cards and inspirational letters of support.  The force field of love protecting me grows stronger every day.
The procedure I had on my liver to obtain core samples of the tumor was a breeze. I was awake and it didn’t hurt a bit. It was a little sore afterwards, but nothing to complain about.  Dr. Schaub assured me that they got a good amount of the tumor and he is hopeful they’ll be able to grow the new cells. I am thankful now that we didn’t go through with the full liver surgery. I have no recovery from this.  I can hold and lift my baby.  I am in no pain. Perhaps the universe intervened at the last minute, sparing me the ordeal of major surgery because it knew the cells could be grown this way instead. For that I am thankful.
The nurses at the Clinical Center are phenomenal. They are so kind and caring. I had pictures of baby Kai taped around my bed and different nurses kept coming in to see them.  Also, nurses I hadn’t met came into my room just to say hello because they had seen the picture of me and Kai that I had left with Dr. Schaub at our first meeting at NCI. I had asked him to show it to the other doctors when they were meeting to make their decision regarding my acceptance into the TIL trial. Not only did the other doctors see it, but so did the care team on the whole unit. I’m not sure if I can explain the gratitude and warmth I feel each time someone tells me that they recognize me from my picture, or when someone I have never spoken to asks me about my baby. And it’s not just the people working my unit. It’s people all over the Clinical Center (for example, the anesthesiologist I met with before they decided not to do the liver surgery, and the research nurse who gave me the informed consent to sign).  I’m sure they show the same level of kindness and concern to all of the patients, but the fact that everyone seems to know me and baby gives me a sense of soaring hope. It makes me believe that I have a whole hospital working towards my cure. I know they care about me as a person. I am not just a patient, or a research subject.  To them I am a new mother who needs their help.  And I do need their help.  My life depends on it. 
Yesterday we received the excellent news that my original tumor tested positive for the BRAF mutation.  This is terrific news because it opens up the ability to obtain BRAF-specific treatment that is showing very promising results. The more options the better.  The more chances I get, the greater the chance for success. These treatments are also in clinical trials right now, but one may be approved within the next few months.  I feel very fortunate that I have so many options.  I am just getting started on this journey and the fact that there are so many potential paths to success to choose from give me the strength to take each new step.  I am so very thankful for that.
Being in a clinical trial is a win-win situation, in my opinion.  Not only do I get access to cutting-edge treatment, but I also get to help further medical knowledge to help inform new treatment options for other people with melanoma. When you are involved in a clinical trial, your treatment is free (not just at NCI, but everywhere). Because of this, many people think that clinical trial participants are all in financial need and without other options. They liken being in a trial to being a guinea pig on whom experimental treatments are tested. They think participants are taken advantage of and exploited. This could not be further from the truth. Jeff and I both have good jobs and we have excellent health insurance. It doesn’t matter what financial resources you have, if a treatment is not yet approved by the FDA, then you can’t get it unless you join a clinical trial. Trials are not conducted frivolously. It costs millions and millions of dollars to create new medications and treatments. Without clinical trial participants, no new medications could be developed. Research for complicated diseases like cancer is always evolving, always growing, always advancing. To gain access to the most current knowledge, you need to join a clinical trial. Clinical trials find cures. Clinical trials save lives. Clinical trials will save my life. If not this one, then the next one, and if not the next one, then the one after that. I will keep trying until I have won.
Even though I am anxious to start throwing punches and beating this cancer down, I am nervous about going through the IL-2 treatment. The side effects listed on the informed consent ranged from fatigue to one person having to have her arm amputated. Of course they are required to list everything that has ever happened, but still, there’s no way of knowing how my body will react. No matter what, I will not be feeling well and I will be missing my baby terribly.  But I will remember every second that the worse I feel the harder I am fighting. I will welcome pain and discomfort because I will know there is a war raging inside me and find comfort in the fact that it is the treatment making me feel sick, not the cancer. As much as I appreciate being there, it is scary for me on the unit.  The other patients I have seen are extremely ill. When I see them, I see what I could be like. It is easy for me to be positive and thankful now when I am healthy and strong. I worry that there may be a point where hope may not come so easily. But that is worthless speculation, because soon I will be cured. 
I couldn’t post yesterday because I didn’t have a password for internet access. I didn’t push for it because I knew I would be home today.  I feel badly asking for things not directly related to my cure while I’m at the Clinical Center.  Everyone is working so hard for me already, and working equally as hard to save the lives of all of the patients.  But when I am in for the week next week, I will make sure I have access.  Jeff bought a Web camera so I’ll be able to watch baby Kai all day and all night.  We’re also going to take all of the good advice and Skype as much as possible.  Seeing my sweet baby, my wonderful husband at my side, and the genuine care of the doctors and nurses will get me through next week’s treatment - no matter how difficult it turns out to be. Bring it, I am ready!
Today I am thankful for being home with my baby; all of the cards and letters that were waiting for me; the enormous care package from Jean; the neighbors shoveling for us again; the news of my BRAF status; my amazing Wilson friends who have created a team for the Melanoma walk at Villanova in April; my fabulous MMG family who are wearing melanoma bracelets while I am gone; the continuous daily calls and texts of love and support; and, as always, my best friend and husband Jeff and my prefect baby Kai. I am sorry I can’t be here every day like you are used to, little one, but I will make it up to you over the years to come. You are my reason, you are my fight.  I will not let you down.


  1. Home Sweet,Wonderful,Warm,Comfortable Home...
    So so glad you are there :)
    Sending you all love and light, Lynn

  2. Your entry has such terrific energy today .... All I can say is "You Go Girlfriend!". Sending love and light.
    Joy and John

  3. I'm writing again to let you know I am with you. I read your blog and marvel at your strength and positive energy!

    Another quote for you:
    "If you're feeling low, don't despair. The sun has a sinking spell every night, but it comes back up every morning."~Dolly Parton

  4. Jamie--So happy you're at home with Kai. Even if you were a runner, this ice is horrendous. Snuggle, ice cream and cable it up!

    See you Thursday, where internet pw is the first order of business! You're words are too inspiring to not share.--Christine