April 5

Well, here we are again. But this time with the fabulous knowledge that the treatment is working. Knowing the horribleness is going to start again tomorrow morning is causing me much less anxiety since I know for sure that it’s working.  This time the IL-2 is my friend and I welcome her back with open arms (and liver and pancreas). We arrived at the Clinical Center around noon today and first had blood drawn. We then had a meeting in the clinic with Drs. Schaub and Yang (Dr. Yang is my new attending physician – not new to the surgical team, just new to me). They reiterated what Dr. Schaub told us on the phone yesterday, but even though we already knew the information, it was great to hear it again in person. After the meeting, we went to the in-patient unit (same unit as before), completed paperwork and saw my room. Unfortunately it’s not a private room this time, but the unit is completely full. I know there are people who are immune-compromised and need the privacy much more than I do.  But I’m still hoping something opens up for the worst of the treatment – and not just for my sake, but for my roommate’s sake as well. Either way, I will be fine. We then went to the procedures unit and had my PICC inserted by a hilarious nurse named Mash. The procedure takes about an hour and a half and during that time, Mash told me about his son’s involvement in clinical trials for ulcerative colitis. Ultimately, he had to have his colon removed and his rectum reconstructed (and is doing very well now, a year after the surgery). I am going to remember this when I want to complain about the IL-2 diarrhea, because really, a few days of that is nothing compared to having your colon removed.  After the PICC was inserted, we left for about an hour to eat dinner and then came back to unpack. Now I am in my room, settled for the night, and Jeff is on his way home. They will begin the pre-medications and hydration (through my PICC) around 10:00pm and the first dose of IL-2 will be at 7:00am tomorrow morning. Dr. Schaub said to expect to receive fewer doses overall. We shall see what happens tomorrow. All of my focus is going towards not ending up in the ICU confined to bed again. Mind over matter – no ICU it will be.

Even though it was a bit of a mad rush to get everything ready to be admitted today (when we were not expecting treatment to begin again until the end of this week or the beginning of next), I am so glad we are starting now. The sooner we start, the sooner we will be finished.  And this time we might really be finished; finished for good! What a fabulous thought.  IL-2 only helps 15 percent of the people who receive it. It only cures 5 percent. I am already one of the 15 percent.  I will be one of the 5 percent as well. And I will forever be so extremely thankful for this wonderful journey that has already given me so much love, so much friendship, so much understanding of myself and my life priorities. My priorities in life are my family and friends. Period. There have been moments when I have been terrified that I won’t see Kai grow up, that I will abandon him when he needs me the most. I have been devastated thinking about all the time with Jeff I might miss. I have been overwhelmed with guilt about the pain I might cause my parents. And I have wallowed in self-pity about the good times with friends that I might never have.  But never once have I worried that I may never have a house full of expensive things. Not one time did I grieve for the luxury cars I might not drive or the designer clothes I might never wear.  I haven’t spent any time worrying that my house wouldn’t be clean enough, that the chores wouldn’t all get done at the exact right time, or that I might not get a big enough bonus at work. None of that matters. It just doesn’t matter. The only things that matter are the love I share with my family and friends, the fabulous connections possible between others on similar journeys, and the overwhelming support that explodes from others when you share your journey (whatever that journey is) with them. So from this experience, I make these promises to my sweet baby Kai: I promise that I will never say to you “we’ll get to that tomorrow” unless I’m talking about cleaning your room or doing something similarly un-fun. I promise that I will always remember how important it is to seize the day and make the most of every minute, and that the most important aspect of each day is the amount of sheer joy you experience. I promise I will always have time for you no matter what else needs to be done; to listen to your stories, to help you, or just to play.  I promise you that you will always know just how much I love you and how important you are to me. And most importantly, I promise you that I will do my absolute best to ensure that you grow up experiencing life, appreciating life, and loving life.  I will pass on to you these fabulous gifts of love that others have given me.  And I will love you fully every day of my life.  Because of this journey, I think I will be a better mom than I may have been. And for that, I am thankful.

Like the previous times, I will try to post as often as possible over the next few days. Since the second round was so vastly different than the first, I have no idea what to expect this time. Fingers, toes, and eyes crossed for staying out of the ICU. Otherwise, bring it IL-2, I am ready for you my friend.

Today I am thankful for the comfort and familiarity of the Clinical Center; the treatment I will receive tomorrow, including the pain that will lead to my cure; the continued support of our amazing family and friends; and as always, my absolutely fabulous husband, Jeff (I promise to also love you fully every day of my life) and my precious baby Kai. I miss you with a tangible pain, my perfect little one. Please know that I will be back soon to feed you sweet potatoes.