Wednesday, April 27, 2011

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

26 comments:

  1. Jaime!
    You are one amazing person. I have been admiring your bravery and your persistence and now I find I admire your ability to continually find a new life-altering perspective. What an amazing journey you have been through and your soul sounds new.
    I have been reading all though your blog all along not knowing what the next encouragement should be. Today I am thinking and praying and knowing that God has blessed you amazingly.
    You've got some life to live!!
    All His very best is coming to YOU forever.
    ~and your wonderful husband and your baby boy.
    Jacquie

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  2. Jamie-
    Glad to see you are getting some energy and strength back. You are amazing! You did it- you looked cancer in the eye and said- Go away, I won't be giving in, I have an amazing life to live and you won't take it from me. I'm so proud of you. I told you- your sheer determination and refusal to accept anything other than a cure are what got you through this. Oh, and about a gazillion prayers and positive thoughts being sent your way daily from people that absolutely love, adore, admire, and are amazed by you. Keep up the fight and the positive attitude. I know you're going to get great news when you have your scan. Until then , live, love, and laugh- enjoy your life and this extra Mommy time you've been given. You so deserve it.
    Love you sister,
    -Donna

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  3. Jamie,
    You truly are an amazing person. Your strength and determination are absolutely astounding. You WILL beat this without a doubt. You have such a wonderful life to look forward to with Jeff and Kai, and you have worked so hard to see that future and you deserve it! Get lots of rest and as Donna said, enjoy your extra time of being a stay-at-home mommy to that gorgeous little boy.
    Lots of love,
    Ryanne

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  4. Good morning Jamie!
    Hope this finds you resting well and feeling better with every passing second.
    I am picturing each and every staff member who has crossed paths with you at NCI (and even those who haven't) reading this particular post. If I were them I would print this out and read it every day.
    I think of how wonderful it is just to be able to make someone smile... imagine how your testament must touch all of those remarkable people at NCI. I'm sure in ways I can not even begin to describe.
    This part of human nature is so magical! You never know when a kind word, a smile, or the smallest of gestures may be the most important moment of another person's entire life.
    You, sweet Jamie, are in a position right now where that is flowing both ways... that is beyond magical :-)
    Continuing to pray for your peaceful healing.
    Lots of hugs and love,
    ~Judy

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  5. You make me feel so fortunate to know you. One with such courage and direction. As I've said so often before, you are wise beyond your years. I hope the tiredness goes away before that trip. You certainly deserve a family outing. Take best care of yourself and your family. God bless.

    NKH

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  6. Happened to have Fox and Friends on, which I don't normally watch, and Clayton was sending out his love to you today, wishing he could be at the fundraising event. He put the link to your blog on and I wanted to check it out. God bless you with your journey. It certainly sounds like you have already found the purpose and meaning of what has befallen you and are meeting the challenge head on. I will be keeping you in my prayers and though I don't know you, find your story very inspirational. May God keep you, your husband and baby in the palm of His hand.

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  7. I was just pointed to this blog through Fox News this morning and in reading it I can't help but being moved by your bravery and your wisdom. I was also truly inspired by your last sentence in the most recent post "May any pain you are forced to experience serve only to define your joy" Your story and your wisdom has inspired me to never give up or give in. I will never forget these words for as long as I am blessed with life. You are an inspiration to all. God bless you.

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  8. Jamie, I just learned about you and your fight through Fox & Friends this morning. I immediately pulled up your blog. I was diagnosed with Melanoma when I was 7 months pregnant with my second child. Fortunately, it was a very thin layer and was not even staged. My sister has since been diagnosed with Melanoma, but was also caught early and did not require treatment. Please continue to fight the goood fight; you are in the minds and hearts of many.
    Polly in Kansas

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  9. Jamie, I also was watching Fox this morning, when Clayton gave the link to your blog. I wanted to check it out,especially because I am a melanoma survivor. I am 61 yrs. old, and diagnosed with melanoma in 1992, the year after my 19 yr.old son was in an accident at college, and broke his neck. He is 40 yrs. old now. Still in a wheelchair. I had two small surgeries, and the second surgery at Duke got it all. I am so thankful, but hearing your story hurts. I will be praying for you and your family. I live at HHI SC. If you ever need a getaway please feel free to get in touch. My husband and I would love to accomodate you and your family. We have seven grandchildren that live here in the same town. Good luck to you, and you are on our prayer list. Just blog on your site if I can do something to help you in any way, and I will get back with you. God is with you.

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  10. You have stood and fought through all of this. I am more proud of you than I can say. You finished the hardest fight of your life. You are still standing and you are full of love.

    God bless and see you soon!

    Andy

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  11. Jaime,

    I was diagnosed with stage 4 melanoma last February. Like you, I am a new father with a 13 month old baby girl. I also endured IL-2 as well getting 12 doses the first time and six the second. Unfortunately, it did not work. But there is still hope. I just received my third chemo and feel much better. I will know more on Friday when I get my scan. After that, it's on to Chicago at Cancer treatment Centers of America.

    You will be in my prayers. A doctor once told me to set goals. One for today, one for the week, month, five years. It was the best advice I've received. I plan to beat this so I can walk my daughter down the aisle someday.

    Good Luck!

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  12. Hi Jamie,
    I am curious how you are doing today and what your current PET scan has shown about tumor shrinkage.
    My metastatic melanoma was discovered the end of Sept. 2010. I have finished 6 rounds of IL2 treatments at University Hospital since November. Like you, I was fortunate to be one of the lucky few who responds to IL2 and several tumors on bones went away.
    I have one remaining tumor on my lung now the size of a quarter from the previous size of a playing card. My next PET scan will be the first week of June to see what's next.
    Your struggle is filled with joy around your new son. Congratulations.
    Amy

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  13. It was so nice meeting you this weekend Jamie! You are amazingly strong. and I loved meeting Kai. What a handsome boy!!
    Nicole

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  14. Thank you , Jamie! I was diagnosed with Stage III non-hodgkins lymphoma in December and I've been looking for a support group to join. A friend told me about your amazing story. Reading your journal was just the comfort and inspiration I needed today. Although I am not a mother or a wife, I related to so many of your feelings and insights you shared. You are such a positive, oourageous woman! I will keep you and your family in my prayers.

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  15. Dear Jamie,
    Today I spent the morning reading about your journey. Of course I cried but I also found myself smiling at your joy, at your positivity and your "cheeky" comments. I recently had a mole removed and it was diagnosed as melanoma. I didn't even know what melanoma was...now I am trying to make sure others take measures to ensure they get skin screenings! Your blog has educated me and I posted it to my FB today. I will pray for your continued healing. Thank you for sharing your story.

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  16. Wow, Jamie! A shout-out on Fox News for you and the fight against melanoma forces me to remember that good can come from all places, even Fox News. You keep all of us grounded and encourage us to be wise, loving, and open--it's a great gift. Thanks a bunch!

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  17. The Safe from the Sun walk/5K run was certainly a success! The only thing we missed was our Jamie. See you there next year! XOXOXOXO!

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  18. Jamie,
    I first heard about your story from my Aunt who is a friends of your mom. I was diagnosed with melanoma in Oct. 09 when my 2nd son was only 3 months old. i was lucky enough to have found it early and WLE surgery was all the treatment i needed. Latley as my husband and i are thinking about having another baby my fear of the melanoma coming back or spreading has become much worse. After reading your blog this morning I have a feeling of strength and releif. Your words and courage are so inspirational and it was just what i needed to hear. God Bless you for fighting through this and having such a positive outlook. Thank you for sharing your story with us. Good luck and God Bless!
    Samantha Nye
    Myerstown, PA

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  19. Happy Mother's Day, Jamie! And many many many more!

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  20. Jamie, what a joy that you are home doing what you do best: being a mom to that beautiful baby Kai! Happy Mother's Day! Nancy D

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  21. Jamie,
    I've been thinking of you as always, and wanted to wish you a Happy Mother's Day. You are among the bravest of mothers! You certainly have a wonderful following, a community of well-wishers and love-senders. Count all the Rendles' and our friends and family among them. Here's hoping you can settle into just being a wife and a mom this month.
    God Bless,
    LBR

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  22. Jamie-I thought about you all day on April 30th. I'm sorry I could not get to PA with the other bulldogs but I was there in spirit.

    This recent post struck a deep chord within me about the journey we both traveled in high school...the journey he traveled. As I'm sitting here typing through tears I think of the butterfly effect. (also one of my favorite movies:)

    "Where a small change at one place in a nonlinear system can result in large differences to a later state."

    All you have come to and are rediscovering along this path is profound. The simplest of gestures, the conversation with no words can make an amazing difference in a persons life.

    Sending you big hugs and continued strength and healing! xxx

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  23. Your journey is one that all of us can learn from. So glad you guys had a nice anniversary! The pool will be such great fun for the three of you to enjoy together! Pictures, pictures, pictures! =) Love you, sister. Today I (and I'm sure WE) are [still] grateful for you. Love you, sister. XO

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  24. I'm thinking that right now the unending nature of your journey must be interesting to deal with. When your June 1 scan shows that the tumors are gone, what then? You will never go back to "normal life"--no such thing any more. It's rather like waiting for life to get back to normal after the baby. You have to discover a new normal. I believe that it would be a good thing for you to continue to share with us the twists and turns your journey takes. Cancer will always be a part of your life--hopefully a smaller and smaller part as time passes, but a part that has changed you forever. Tell us about what happens after you get your clean bill of health. What is the new normal? And know that you continue to be surrounded by love and light.

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  25. Well I missed the shout-out on Fox news and now several weeks later I hope you are back to feeling like your true self! Hope to see you soon!

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