Wednesday, February 9, 2011

February 9

I'm not sure there are words to accurately describe what just happened. The best I can say is that Mr. Dante, sir, your very vivid portrayal of hell's seven layers was incomplete.  There is an eighth layer of hell and it's name is IL-2. The steady, painful but manageable, descent of doses 1 through 9 ended in a complete skull-shattering breakage of self at dose 10. On the way down, I knew it was uncomfortable, I was throwing up, I had massive chills and shakes, had unholy amounts of diarrhea, and gained over 20 pound of water weight in 2 days (the best way to describe that was that it looked like I was wearing fat makeup for a movie - I was unrecognizable).  But still the same, I had the audacity to ask Jeff how anyone would be able to say they wanted to stop the dosing, knowing that the dosing might save your life.  And then I hit dose 10. It didn't matter if I had wanted to continue, the doctors wouldn't have let me.  They were on the fence about the tenth dose and afterwards there was no question about continuing. The next few days (Sunday through this morning) are only flashes.  I cannot piece together a timeline and in some cases I'm not sure what is real and what were hallucinations.  I'll start with the facts. After the tenth dose, it felt like I fell to the bottom of a dark, lonely pit and smashed into 1,000 tiny pieces. The worst was the headache. It felt like my skull was splitting open every time I opened my eyes. I was only able to open my eyes a few times a day, while I was fading back and forth from wake to sleep.  I also had a terrible soar throat, which made drinking next to impossible. When my eyes were open, I was hallucinating.  First I saw hundreds of little brown insects flying around my room and crawling all over the curtains.  I also saw hoofed, antlered animals walking back and forth on the other side of my curtain. I saw tree branches growing out of everyones' heads, I saw words and math equations scribbled all over the walls, I saw flashes of lightening going off continually.  When my eyes were closed, I didn't know where I was or who was in my room with me. I saw full episodes of TV shows that have never existed.  I thought we were at the ballet, in a dark auditorium filled with people.  I heard voices talking all the time and I have no idea which were real and which were not. Physically, I couldn't lift or move my head without excruciating pain. The slightest movement made me nauseous. I knowingly soiled myself at least six times (to the point where the diarrhea was being treated with opium). At one point, I was laying on the floor with my head in a bucket. There are itchy sores all over my body and my face looks (and feels) like someone ran a cheese grater over it. I couldn't stand any amount of light or noise. My poor sweet Jeff, sat by my side, in the dark, for 15 hours a day. My cousin, Jason, came to visit Monday and all I remember is that he hugged me when he came and when he left. I could hardly talk, I couldn't look at or read anything, and even hearing things made me feel sick. I thought I was broken. This morning, when I opened my eyes, the only reason I didn't let out a scream of utter pain and terror from the torture inside my head was because I was physically unable to make sound. The nurse who was taking my vitals looked at me and said, "okay that is enough, you have had enough." She then called the Fellow on call (Fellow as in research Fellow - between resident and attending physician - not as in "for she's a jolly good one") and got me some headache-curing ambrosia.  Since taking that (and blowing out 10 tissues full of blood), I have been feeling much better and am crawling my way back up to the top of this pit, with the terrifying knowledge that I am going to have to do this all over again in about a week.

The way that I felt was indescribably terrible, but it was not dangerous.  The doctors and nurses were monitoring me constantly to ensure that my blood levels, organ functions, and mental capacity were sound. They came every 4 hours to take my vital signs, and came almost as often to ask me math equations and to spell words backwards to check for mental capacity. During the days that were mainly flashes, I have distinct memories of Dr. Hong (another Fellow) coming in to ask me to count down by sevens from 100 and to spell "world" and "nurse" backwards). Dr. Hong even called Jeff at home after the 9th dose (which was around 11:30pm on Saturday night) to tell him that they would probably go ahead with the 10th dose Sunday morning, but that would be it. They took a very large amounts of blood (sometimes up to 15 vials at once) to use for my treatment and for research purposes.  I had continual IV drips of anti-nausea, anti-diarrhea, saline, and other fluids. The care was phenomenal, from the doctors, but especially from the nurses who I saw much more often. They knew exactly the right tone of voice, when not to turn on a light, how to take blood and change IV medications without waking me up, when to come in just to say hello and ask how I was feeling.  Even nurses who weren't assigned to me at the moment would come in to say hello - like Christine, the woman with the baby one week older than Kai. So far, the care I have received here has made me feel like I am nestled safely in a healing hug.

Just so I am not too biased, I will point out three things that seemed to go "wrong." First, we were told that all of the "feel better" IV drugs would stay for 24 hours after the last dose of IL-2. That didn't happen, they were removed almost immediately. Second, one of the weekend nights I ran out of toilet paper and after a 2-hour search, the nurse came back with a box of tissues. Now I appreciate the improvisation, and really there's not that much difference between the two, but if your diarrhea is bad enough to be treated by opium, a box of tissues is not going to do it.  It seems strange how difficult it is for the nurses to find everyday housekeeping items, such as toilet paper, after hours. Thirdly, during one of the hazy days an X-Ray was ordered for me accidentally, which may not seem like a big deal, but meant numerous people talking loudly in my room, with all of the lights on, all moving me this way and that to get me on the X-Ray board. After they had finished, someone yelled down the hall, "Whoops, wrong patient." That was the incident that led to me laying on the floor with my head in a bucket after soiling the bed. Things happen, I am not complaining, I am just trying to give an accurate description of my experience. And as horrible as this treatment was, I would not undo it, because it could be my cure.

My sweet, sweet Jeff has been a godsend. Not only has he been caring for me 15 hours a day, he has also been dealing with a broken heater and dishwasher at the house, coordinating everything with the baby, and even doing work from home. His constant love and support have been the lifesaver that has gently pulled me out of this seemingly bottomless pit to lay me lovingly on the hope-filled ground above. In all the years that we will have together, in all of the times I will be there for you, for this I can never repay you. You are my heart, you are my soul, my are my every breath.

Today is Wednesday.  I came here this past Thursday.  That means I have not seen my precious baby Kai in six days. We thought about bringing him today, but I was not yet well enough.  Maybe tomorrow. I know he is in good hands - Jeff's parents are lovingly caring for him night and day.  But I am so afraid that he has forgotten me. A week is a long time to such a little baby.  What if he doesn't know who I am when I get home, or worse, what if he doesn't care. It feels like we have been apart for months. The longing I feel for him is tangibly painful. I am nervous and excited to see him both at once. Excited, because he is my angel and I cannot wait to hold him. Nervous because I am so scared that I won't see any recognition in his eyes when he looks at me. I can only hope that the bond we have is strong enough to carry us through this week together and that, on some level, he holds me somewhere in his heart just like I do him.

So I'm on the ascent back up now. I will probably be able to go home Friday. I cannot wait to sleep in my own bed, shower in my own shower, and hug my baby with all my might.  I have to come back the 21st to do this all again.  I honestly do not know how I am going to find the strength to do this again, knowing what I know now. Of course I will do it - it could cure me - I will do anything to make sure my baby has a mother. But I will certainly enter the hospital with a heavier heart for round two. This week I will work on focusing on the curing aspects of this treatment. I will be thankful everyday that I have the opportunity to receive this care. I will take the nurses' healing hug with me so I can return in it ready to fight again. I will hold my baby, I will kiss my husband, I will visit with my family, I will talk to my friends, and I will eat cookies.  And then I will come back and kick some IL-2 ass all over again.

Today I am thankful for the comfortable tempurpedic hospital beds; the caring doctors and nurses at NCI; my mother- and father-in-law for taking care of Kai; our wonderful family and friends; my absolutely perfect husband to whom I am forever indebted; and my sweet precious baby Kai. Please know that I will be home soon.  Please know that every ounce of my being longs to be with you.  Please know that our time apart now means so much more time together later. And please know how lucky I feel to get to be your mother.


  1. Jamie, Baby Kai knows your scent and he knows your voice from the womb. You are of him and he is of you. Let peace rest upon you after that journey into such a dark corner. You emerged from it as you will again. We send now quadruple the energy of love to add to all the others to help you as you go forward. Be blessed with healing light.
    Nancy D

  2. Jamie,

    Don't worry about Kai -- he'll know you the moment he sees you. You're his world as much as he and Jeff are yours.

    We're praying for you constantly. Stay strong and God bless.


  3. I know you have read all the books about babies, and I know that you have listened to the in-house experts--the grandmas. Now listen to me. KAI IS NOT PHYSICALLY ABLE TO FORGET YOU!! (Ok, so I'm sorry if shouting makes your head ache.) Nancy is right--he knows your scent, he knows your touch, he knows your voice. The bond is completely unbreakable. So don't fret.
    May all the love and prayers coming your way sustain and uphold you.

  4. Jamie,

    May God bless you. You are so strong. I am awestruck. I'm praying for you and wishing you and Jeff nothing but the best.

  5. Oh Jamie, I'm so sorry to hear what you have been through. But, you MADE IT THROUGH. You are going to get through this. Kai needs you. Jeff needs you. Your family, friends, we all NEED you and LOVE you. You are an incredible, amazingly strong woman and cancer can't beat you.
    Listen to everyone, and listen to me, Mommy to Mommy- Kai is a part of you, he grew inside you, he will know you. He loves you and he will know you as soon as he sees you, as soon as you hold and snuggle him. Hold him tight, enjoy him. He will help you heal.
    I love you and I'm sending you lots of positive, healing thoughts and continue to keep you and your family in my prayers every night.
    I hope to see you soon, I'll keep sending cookies, send me any special requests.
    Get some rest.
    Love you,

  6. Jamie,

    WOW! To say that your attitude and strength are inspiring is likely the greatest understatement of all time. I've been refreshing your blog page obsessively in anticipation of hearing that you made it through 10 doses. I'm so glad you did it! I'm looking forward to & thinking good thoughts for more success stories. XO Whitney B.

  7. Jamie,
    I echo what Whitney says, your strength is more inspiring that words can describe. You are truly an amazing woman. I completely understand your fears about Kai forgetting you, but rest assure, there is NO WAY that will happen. He knows you and loves you more than anyone in this world (sorry Jeff). Remember how you said you and Jeff often hear the music from his swing even when it is not on, your voice is Kai's favorite music, he sees your face and hears your voice everyday, even when you are not there to speak to him.

    You are in my constant thoughts and prayers. Sending you lots of love - Ryanne

  8. Way to persevere, baby! Friday means baby time, family time and battery charge time for round two - you got this, sister. We're all behind you - every damn one of us - praying/thinking of/hoping for your comfort and wellness. You AND Jeff. I'm so sorry for all the pain you're in - I'd help you absorb it if I could, Jam. Round two's got nothin' on you - give 'em hell, Jamie. Love you. xo

    Oh and PS - your little boyfriend could never forget you. You'll see...xo

  9. Kai is holding you in his heart as you are holding him. He is so strongly connected to your scent, your smile, the way you hold him, your heartbeat, your voice, your every movement is part of him. He has known you for almost a year now from day one to almost 4 months. He is a part of you. It is the strongest bond there is: mother child. He will relax into you and his very being will know that his world is right again. So, for tonight, rest easy knowing you are being cushioned by so much love from so many people. Just let your body take in all the love light as it assists your body in its healing. Let go... relax... drift into healing... ahhhh.... sleep well, dear one. xoxoxo

  10. I will not say anything different than all the other posts before me. JUST KNOW that Kai knows you like no other person in this world - and always will. No matter the distance or time spent away from each other - just wait - you'll see. I'm proud of your determination to make it to 10 doses - and don't know how you did it. Don't even think about round 2 yet - enjoy every minute of your break and deal with the rest once you're there again - not a second before that. You'll do it - and you'll win! Love and prayers -
    Sharron D

  11. Three things:
    1. So good to hear from you! I now know how an addict feels. Like Whitney, I too have been obsessively refreshing your blog page just to know you are ok. I can't even admit how often!
    2. I think you mentioned fearing that when you look in Kai's eyes you won't see the recognition that was there before... I have a feeling that the only way you won't see that recognition in his eyes as soon as Kai is in your arms is because he may instantaneously feel "at home" when back in your arms and quietly close his eyes in bliss for one of those "I'm in my Mommy's arms, my favorite place in the world, so back off world and let Mommy and me alone!" naps.
    3. Finally, listen on your Mother :-)
    Even more love and hugs, Judy

  12. Jamie! So glad to hear that round one is over with. Friday is one more day away....go home, relax, enjoy your precious baby and fabulous husband and the rest of your family and friends! You kicked butt girlfriend, as we all knew you would! Kai has not noticed the time apart, believe me, as soon as you hold him it will be like you were never gone! Trust that! Sending prayers your way...

  13. "We must embrace pain and burn it as fuel for our journey." ~Kenji Miyazawa

    O Jamie you are amazingly brave for going through the first round of IL-2!! I know you will meet the second with great force as well. Rest now and relax. Sending love and light...

  14. Jamie... thanks for displaying what courage really is. Kai will always know you and long for you!

  15. Wish I had words of wisdom, but I have none. Here's hoping that 12+ hours since your post you are much further down the healing path and still on schedule to go home tomorrow. Stay strong!

  16. Jamie,

    You are amazing. I envy your courage and perseverance to achieve your goal. As others have already said, Kai will reconnect as if you'd never been apart--he'll recognize your love and affection for him. Keep pushing forward.

  17. Jamie, you amaze me. With each word of each post, I'm blown away by your courage & determination.

    Furthermore, I'm honored that you're sharing every step of this difficult journey with all of us through this blog. As the queen of starting things, and the peasant of follow-through, I admire every new update you post on here. I can only imagine how easy it would be for you to stop writing & sharing with us, but I'm so grateful that you haven't. I, (along with everyone else following you), look so forward to each new entry. It's sort of our way of taking this journey with you when we're geographically unable to do so. Please know that there is a heart in Nashville, TN praying for your cure every day.

    You are so brave, and your spirit is inspiring beyond measure. I will continue to pray, and I will continue to check back daily to see the answers to those prayers in action.

    ~Ashley Hertzog~

  18. I somehow stumbled onto your blog and immediately was transported back in time to when my husband and I found ourselves in a very similar "layer of hell"...what I want you to focus on is the time frame of when our experience was...1991.....and we are both here to relive those months as we read your posts....20 years later..
    That's the main reason I decided to post to let you know that there is hope and
    a life to live on the other side of the 8th layer of hell.
    I'd forgotten (perhaps blocked) some of the moments that my husband went through, but reading immediately transported me back to
    NIH, as if it were yesterday. We live in
    KY and found ourselves 14 hrs.from our 3
    young boys and family, but the nurses and doctors and other families in similar situations, became our extended family
    very quickly.
    My husband was given TIL and IL-2 in one
    of the early trials and although he had a recurrance in '98, it was surgically
    removed and he is considered one of the
    longest-term survivors...although, not
    the only one...He's been a warrior against melanoma for 31 years..over half his life..
    But, I say all that to encourage you..
    because in you, I see the same
    determination and courage that I've
    admired in my will not
    "give up gracefully", you will fight
    for the life that you've envisioned to be yours...with God's grace and your strong
    spirit you will survive...and you will
    join my husband in the ranks of warriors
    that are winning the fight....and living the life...of a melanoma survivor.

  19. Sherre! Thank you for sharing such a positive story.
    Jamie, I wish I could put into words how much reading your blog inspires me. It makes me grateful for something I often take for granted - health.
    “Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope”
    Keep the faith!

  20. Dear Lady, You are my newest hero. You talk about round 2 on the 21st. I'm not sure of your level of courage, but it has to be up there above 100. I feel so badly that you have to endure all the drugs they administer to you with the vicious side effects. But as you say " it could cure you". I feel it WILL cure you. God bless, rest when you can, fight like hell. You will be the champion.

  21. Girlfriend,
    20 years from now you will be posting comments for others just like Sherre shared here (thank you Sherre!) You continue to be be an inspiration to so many people. Love, love, love you dude! Keep fighting the good fight. You are amazing!

  22. Going home day! Yeah! Hope all is on schedule and you are healing more and more with each passing minute!

  23. I would like to echo many of the postings above and say that your strength is so tremendously inspiring. I cannot describe how much your messages have blessed me personally. You are amazing!
    I understand your fears about Kai, but KNOW that he is cared for and will bond with you as if it were his first day when ever you are together! He knows you and always will.
    You are in my (and my church members) prayers Jamie. I have a lot of trouble getting through some of your writing because it sounds so terrible. I CAN"T even imagine what you are feeling. Know that GOD is WITH you and Jeff and your parents-in-law. HE promises never leave you.

  24. Jamie,
    You are so brave. So many people who have never met you are praying for you as you go through this treatment. I am so awed by the way that you pour out your experience to those of us who are checking in on you. Kai is blessed to have a mom whos first thought is not what she is eduring to fight this cancer but of her sweet baby boy. Thinking about and praying for you every day.

  25. When I was coming out of my coma, I also saw TV shows that never existed and heard complete songs that I've never heard, and seemed to be existing in all these scenes and sounds as a bystander, but not really participating. You described it perfectly in a way I've always struggled to explain to others.

    You are an inspiration! Enjoy the time with your family. Treasure it.