April 27

I am home.  I came home on Sunday. I am so tired this time. I’ve been meaning to post for days, but just couldn’t get the energy to do so. This time was different. I felt much “sicker” during the treatment. I slept almost the whole time. I spent each day in a constant state between sleep and wake, not quite sure what was real and what was a dream. I got six doses.  The doctors were happy because usually the second course (the third and fourth rounds added together) results in significantly fewer doses than the first course (the first and second rounds added together), but my first course was 14 total doses and my second course was 13 total doses.  Nothing too exciting happened this time; I didn’t end up in the ICU and I didn’t have any hallucinations. But I felt very ill and so tremendously tired that I could hardly move. Thankfully recovery is generally relatively quick.  The descent down to the eighth layer of hell is a slow and steady trek, but once you get to the bottom there is a hot air balloon waiting to carrying you softly and quickly back up towards the sun. I am still so very tired, I have a rash covering half of my face, and I am having some strange mental disturbances – the boundaries between sleep and awake are still unclear, I’m not sure what’s real and what I’m imagining, and I’m having a lot of trouble remembering things. The nightmares remain, but they prescribed pills to help this time. So it’s just a matter of waiting it out and slowly returning to normal. And now we are finished with the IL-2. No matter what happens next, I will not have to do IL-2 treatment again. We’ve completed an entire treatment. And with continued luck, the next scans will show that the tumors are continuing to shrink and the IL-2 will be my cure. I had a 15 percent chance of responding to the IL-2 and since I entered that 15 percent, I now have a 30 percent chance that it will cure me.  I have no doubt I am part of that 30 percent. To do one treatment and have it work is just pure fantastical luck, and I know there is not one patient on the unit who wouldn’t trade places with me in a minute. I knew the universe wouldn’t give me such happiness and such a perfect little baby and then take me away. It’s a balance; I am paying for my wonderful life, and the tradeoff doesn’t even come close. Not only have I been given the gift of new life, I have also been given the gift of this amazing journey. I have been given the gift of extraordinary friendship and love and support and connection. I have been given an overflowing abundance of understanding and awareness and gratitude. I have been given so much more than I deserve and I will spend the rest of my life trying to live up to and repay these gifts.  

Baby Kai grew up so much while I was gone. He is sleeping without a swaddle now, which is very exciting. And he’s eating all sorts of new foods. So far squash, sweet potatoes, bananas, and zucchini.  The only one he didn’t like on the first try was bananas, but he ate it anyway, because he’s a perfect eater of course. He’s still all smiles all the time, even though he’s teething, and is having a fabulous time with his grandparents who have been taking excellent care of him. Today was his 6-month doctor’s appointment. He weighs 16 pounds 8 ounces, is 27 inches long, and took his shots like a champ. Jeff and I celebrated our second anniversary on Monday. We had a fabulous dinner made by our friend/co-worker, Angela, and shared a wonderful bottle of champagne with Jeff’s parents. We couldn’t go out, but at the end of May we are taking a trip to the Eastern Shore (Maryland) to celebrate our anniversary and the end of the IL-2. We’re really looking forward to our little family trip with Kai. Most exciting is that they have multiple pools and it will be Kai’s first exposure to swimming. Right now just the thought of leaving the house makes me want to take a nap, but I know by then I’ll be feeling much better and we’ll have a great time

Of course I’m thrilled to be finished with this treatment.  Of course I am overjoyed to be home. But it is strange to think I will not see my wonderful nurses again.  I will continue to see my doctors every month when I get scans to check the progress of the treatment, so they will remain a frequent presence in my life. But the nurses who so lovingly cared for me 24 hours per day, I may never see again. While I am positive that they cared about me as a person, and not just a patient, caring for people who are undergoing horrible treatments and desperately clinging to life is their job. They do it every day. They see the illness and the fear and the sadness day in and day out, and I have to image that to be able to provide this care, they have to desensitize themselves somewhat from the horror they witness every day. But being a person undergoing horrible treatment and desperately clinging to life is not something that happens to a person every day. And going through that illness and that fear and that sadness is an emotionally all-encompassing catastrophic event. And it is manageable mainly because of these wonderful, caring, healing goddesses. These nurses, who have devoted their careers to bringing comfort to people who are suffering from late-stage cancer, do not just go through the motions of administering medications and taking the necessary labs. They sooth, they comfort, they care. They anticipate what side effects might occur, they remember which medications work best, they are aware of the ever-changing emotional states of each patient. If this were a movie, my remembrance of these fabulous nurses would be a musical montage, set to Arms of an Angel by Sarah Mclachlan. It would show these tremendous women standing in my door doing a happy dance for getting me a private room; rubbing my back while I leaned over a bucket throwing up; coming with medications before I even asked in the middle of the night; keeping me company, sitting by my bed telling me about their lives; always smiling, always believing, always hoping, always curing. They were just doing their jobs, but to me they meant the difference between despair and hope, between teetering on the edge of darkness and resting comfortably, between falling into a self-definition of cancer patient who needed to be cared for and realizing myself as a person who would continue to fight. I cannot over-emphasize their importance to my cure. They provided medicinal comfort, but the greatest comfort of all was their ever-present empathy. Theirs were the arms that held me tight while the chaos swirled all around me. They are my healing goddesses and I will hold their comfort in my heart always.

A boy I loved in high school fought his own battle with Leukemia. Unfortunately, the cancer was stronger than the treatments available and he died, in a hospital in Philadelphia, in a room just like the one I was in.  During the first two rounds of IL-2, when we believed but didn’t know for sure if the treatment was working, I spent a lot of time, mainly late at night, wondering if I too would die in a hospital room.  And with a regret still almost too painful to think about these 15 years later, I know that I was not there for him like I should have been. I did not understand what he was facing. I did not fully consider his pain and his fear. I mainly focused on how the situation affected me and my feelings. I can say I was young. I can say I didn’t really believe he could die. But I think the truth is that I didn’t try hard enough.  And so I add to my list of lessons this journey has miraculously provided, the lesson of understanding at least a small piece of what he endured. His fight was longer and harder than mine, and I do not pretend to know everything he thought or felt. But I was given a glimpse of better understanding and for that I am thankful.  And from now on, I will understand what it means to someone to suffer from a potentially incurable illness. I will know their fear, their worry, their guilt, their pain, their terror. I will see the struggle they face each day when trying to fit this all-encompassing overwhelming event into some kind of regular daily life. I will know how very much the love and support of others can lift your heart and your soul. I will have empathy and I will remember to share it whenever possible.  Everyone undergoes their own unique experiences that make them empathetic to others.  We all know what it is to experience fear, pain, loneliness, joy, pride, anticipation. But I know that I don’t always remember to share in others’ experiences – to reach out and let others know that I understand how they are feeling and to feel with them. And I don’t know if it’s because I am afraid of intruding on others’ lives, or I am worried they will think it is none of my business, or I just simply think they won’t care that I care. But the thing I am the most thankful for of all through this journey is other people connecting with me, other people reaching out to me and telling me they care, other people going out of their way to show me love and support, other people seeking me out to share their personal stories and understanding. It has been so powerful that it has turned an emotionally traumatic, physically harrowing experience into the greatest gift I have ever received. It is other people’s love and support that has guided me through this darkness, and the only way I can repay this debt is to remember to use my own heart to light the way for others in the future.

Today I am thankful for the fundraising efforts of my Wilson bulldogs for the Melanoma International Foundation walk this coming Saturday.  Because of the extremely generous donations of so many loved ones, they are close to realizing their fundraising goal of $5,000. Thank you so much to everyone who has donated and who is participating in the walk, with special thanks to Karin and Dana who have put such effort into organizing the event. I wish I could be there with you in body, but know I will be there fully in soul. I am also thankful for my amazing doctors and nurses at NCI; the continued support of our fabulous neighbors and MMG family; every single person who has reached out to share in this journey with me; our amazing family and friends; and as always, my extraordinary husband Jeff whose unending love and devotion have been a model that I will strive to live up to – I love you more than life itself, and my perfect baby Kai. May any pain you are forced to experience serve only to define your joy.

Arms of an Angel by Sarah Mclachlan

Spend all your time waiting for that second chance
For the break that will make it ok
There's always some reason to feel not good enough
And it's hard at the end of the day
I need some distraction, oh beautiful release
Memories seep from my veins
They may be empty and weightless, and maybe
I'll find some peace tonight

In the arms of an Angel, fly away from here
From this dark, cold hotel room, and the endlessness that you fear
You are pulled from the wreckage of your silent reverie
You're in the arms of an Angel; may you find some comfort here

So tired of the straight line, and everywhere you turn
There's vultures and thieves at your back
The storm keeps on twisting, you keep on building the lies
That you make up for all that you lack
It don't make no difference, escaping one last time
It's easier to believe
In this sweet madness, oh this glorious sadness
That brings me to my knees

In the arms of an Angel, far away from here
From this dark, cold hotel room, and the endlessness that you fear
You are pulled from the wreckage of your silent reverie
In the arms of an Angel; may you find some comfort here