Friday, February 4, 2011

February 3

I'm back at the Clinical Center, all hooked up and ready to go (literally). We got here this morning at 8:00.  First, we checked in at Admissions. From there I went to the special procedures unit on the third floor to have the PICC line (a long-term IV that goes in a vein in my left arm, up my arm, accross my neck, and down towards my heart) inserted. The nurse who inserted the PICC line was hilarious. He made jokes the entire hour he was with us. It sounds silly to say, but the PICC line was the thing I was most nervous about.  I'm not sure why, but I was afraid it was going to hurt.  It didn't.  I hardly felt anything - just kind of a weird pressure sensation as the line snaked through my vein.  After the line was inserted, we went to my unit (also on the third floor) to check in.  My room wasn't ready yet, so we went down to the lobby to wait (we could have waited in the family room on the unit, but there's more action in the lobby so we like to sit down there).  Since this seems to be a play-by-play of my day, I had a bagel and a latte in the lobby (I couldn't eat this morning in preperation for the PICC line insertion so I was starving by then). After my bed was ready, we unpacked and set up and then went down to radiology for an MRI of my brain and abdomen. These were two seperate tests (both of them with and without contrast), so the entire time I was in the MRI was about 1.5 hours. Thankfully, I am not claustraphobic. After the MRI, back up to my room to sign the informed consent document for the treatment.  Then they said that we could go out to dinner and come back if we wanted to, so we went home to see the baby.  Also, Jeff's parents arrived tonight, so it was great to see them (since I thought I wouldn't see them until I get home about a week from now).  So we played with the baby for a few hours and then came back so we could begin the pre-medications. I had Tylenol, benedryl, and Ambien as pills.  Through my IV, I had an antibiotic, Zantac, and hydrating fluid. I believe I'll be getting meds every 4 hours from now on.  They begin the IL-2 at 7:00am tomorrow morning.  It is a half hour infusion every 8 hours for as long as I can tolerate it (maximum of 4 days). Cathy, my research nurse, said that the average dose amount is 7 doses, which would be 56 hours (or about 3 days). I'm interested to see how many doses I get.  I'm interested to see what side effects I experience. The range of possibilities is huge, so I really have no good way of knowing before I start.  Dr. Schaub said that it will take a few hours after the first dose until I start to feel it, so that means I have about 12 hours from now until who knows what happens to me. What I've heard most commonly from others who have gone through IL-2, is a feeling like a very bad flu - nausea, vomitting, diarreah, headache, chills, shakes, and Dr. Schaub said a fever of 105 if they weren't controlling it with fever-reducing medications. Other fairly common side effects include extremely low blood pressure (which is a concern for me since my blood pressure is already low), and kidney problems. The one thing Dr. Schaub said happens to everyone is a weight gain of approximately 20 pounds in fluid all throughout the body (of course I get the one cancer treatment where you gain weight.....). I'm not worried about the symptoms.  They have medications to help make them tolerable and they will be monitoring me constantly.  I'm more interested to see what happens, to see how my body handles this craziness. I feel like I'm preparing for battle. The troops are ready.  Bring it!

One big difference between procedures at the Clinical Center and those at a private hospital is the level of detail in which they explain each and every thing they do. Because I am taking part in a clinical study, I have to formally consent in writing to every procedure.  So each time I have a procedure or get a test done, the person administiring the procedure explains the process in detail and advises me of any risks.  I then have to sign a consent form before the procedure can be performed. At a private hospital, at least in my experience, the just wheel you from place to place and do things to your person with hardly any explanation at all. Not that that's necessarily a bad thing - if you are having a procedure at a private hospital, you can assume in good faith that it's medically necessary and the benefits with outweigh the risks. But before participating in research, I never even thought about how little previous medical procedures were explained to me. This fits with what I was saying before about how I really feel like a person rather than a patient here, like an active participant in my health and in this research. The more I am spoken to as an active participant, an intelligent person, a decision maker; the greater the responsibility I feel to be informed and the more questions I ask, which keeps the circle of partnership swirling and reinforces my ownership of and control over this cancer. I am thankful for the partnership that is created, I am thankful for the chance to be an active participant in my cure.

It is interesting how you see familiar things differently when you experience them through new eyes. Jeff comes to the Clinical Center reguraly for meetings (MMG supports patient recruitment for clinical trials for a number of institutes of the National Institutes of Health) and he said today, while we were waiting in the lobby, that he never before noticed how many of the people in the building are patients. Because he was coming for business, he assumed that most of the people he saw were NIH staff or other contractors. Many of the patients are not obviously patients. You have to take a good look to notice their casual clothes, extended visitor badges (which are for patients and long-term visitors of patients), hospital ID bracelets, semi-permanement medical equipment (like my PICC line), etc. But now, since he's seeing the building through the eyes of the husband of a patient, rather than a contractor, he automatically focuses in on all of the patients and sees the building from their perspective. It's interesting how a little shift in perspective can make something familiar seem like a brand new place. Along the same lines, since having the baby and using the stroller, I've noticed how almost completely un-wheelchair-friendly Takoma Park (my town) is. I can't go into any of the little shops or the drug store with the stroller because the aisles are too narrow.  It's not a huge deal for me, because I can take him in the baby carrier instead, but it did make me realize what a dificult time someone in a wheelchair would have in our neighborhood. And I never would have noticed that if I hadn't had to experience it somewhat for myself. I think people tend to view the world through self-centric eyes (that's not a criticism, just an observation) and it really is amazing how your view of something can totally flip when you experience it in a slightly different way. In a greater view, I am experiencing this flip about terminal illness. I, of course, will be cured, but dealing with cancer has opened my eyes to just how deeply dealing with something like this penetrates your entire life, your entire being.  It becomes you and you become it. You don't have to be defined by your disease, but it's still all-encompassing. When death is a real possibility, there are so many things that no longer matter, and so many things that you realize are of the utmost importance. So many things that just a few weeks ago ran my life - schedules, routine, tidiness almost to the point of compulsion - no longer even factor in to my daily life.  Not that I have suddenly become a chaotic slob, but in a sense, dealing with one huge all-encompassing battle has almost entirely lifted the weight of daily, mundane stress and worry. My focus now is so much bigger and more intense than I could have imagined, and somehow that makes everything else a little easier because when it comes down to it, there's not really much else that matters. What matters is my baby, my husband, my family, my friends, and my life. Everything else is floating just outside my periferal vision, like it's waiting to see if I'll need it again or if it should just float away permanently. I am thankful for that, for the lifted weight of daily, unnecessary stresses - see you later aligator, I didn't need you anyway.

It's late (midnight) and I am rambling, so I will say goodnight. The benedryl and Ambien starting kicking in about 30 minutes ago and I am loopy. I apologize for misspellings and typos, I am working directly through the Internet and can't spell check (also did I mention I'm totally loopy). I don't know how I'm going to feel for the next few days, but I will continue to try to post as much as possible. If I don't post, don't worry, if there is something that needs to be told Jeff will post for me.  So, as Jeff said when he left my room tonight, tomorrow we begin the path to recovery. We aren't sure what direction that path will take, or how many miles it stretches, but we do now where it ends and that is a beautiful place indeed.

Today I am thankful for my pregnancy pillow, which is turning out to be a fabulous hospital comfort; the fact that I have no roommate tonight; the amazing nurses on the unit who care for me; nurse Christine and Dr. Schaub who talk to me like we are friends while curing me; my wonderful family and friends; and, as always, my sweet sweet Jeff and fabulous baby Kai. I will be home soon little bear. Thank you for giving me the motivation I need to win this fight.  I hope someday you will understand just how important you are.


  1. Yes, you are on the "path to recovery". I like that phrasing. It's perfect and it IS what you are doing. You are so loved. We are all participating in your battle. We're sending the weapons: love, light, and prayers. You will do this! I love you.

  2. You absolutely ARE heading for wholeness and light, Jamie. Your MMG family loves you and we are with you - you're in the best hands you can possibly be in. Plus, the folks at Hatfield are no slouches, either!

  3. hang in there Jamie, you're amazing. We're rooting for you and looking forward to our next playdate - just think of it this way, come playdate, you'll be well on the route to recovery and our little munchkins will be rolling over :-)

  4. Thanks for sharing the every detail of your day - it makes it so real and that's so awesome to know exactly what's going on with you. Good luck over the next few days! Fight on!!

  5. Jamie, the Louisiana branch of your family is sending positive vibes and love your way, and we know that you, Jeff and Kai are going to make it through this with flying colors. We admire your tenacity, marvel at your willingness to share your clinical trial experience with us, and know for sure that if attitude has anything to do with it you will surely be triumphant. Keep up the good fight! We are cheering you on!

  6. Pregnancy pillow! How smart are you to bring that back to use!!

  7. Lots of positive thoughts and prayers coming your way. You are on your way! We are all here to support and love you along the way. Go Jamie! Love you!

  8. Hi Jamie. I'm thinking of you, and hoping the nasty side effects aren't too bad yet.
    Sending well wishes and prayers your way.
    Brian and I hope to see you soon (if you can fit us into your very busy social schedule!) :)
    love you guys
    Sharron D

  9. If you gain 20 lbs, can I have that skirt I've always admired? Love, Uncle Q.

  10. Jamie - You're such a sweet and generous person...time to fight dirty though! No holds barred. See you soon. Very much love.

  11. Jamie, reading this made me smile. I admire you so much.

    Love you!

  12. Jamie - I'm so sorry for what you are going through. Melanoma is no respecter of persons or age. You show such a positive attitude, and that will help see you through the tough times ahead. I discovered that showing a positive attitude through the good/easy times helped others help me keep a positive attitude through the hard/bad ones!
    I simply must say THANK YOU so, so much for the full and honest level of sharing you exhibit in your blog. For those of us who may someday be where you are, this is a priceless guide to what we may someday expect.
    You are quite correct in saying that most health facilities tell you so little about what they are going to do to you, and what you should expect before/during/after the procedure. The fear of the unknown that accompanies this "not knowing" has to have a detrimental affect - on stress levels, blood pressure, pulse, respirations, etc. No a very healing environment, to be sure.
    Good luck in the days ahead. You are very much in my thoughts.
    Stage III Melanoma Survivor

  13. Hey Jamie and Jeff,
    When Uncle Q borrows that skirt he has always admired, please take a photo of him wearing it and share with the rest of us!! ;)