Tuesday, March 26, 2013

Light as a Feather

When at its peak, my pain can be blinding and completely arresting. Toradol, a high-dose Aleve-type drug, has been the only thing that holds it back, some, and even then my pain remains at a 5 on the scale. When each dose wears off, it comes roaring back in at an 11 or 12, waking me up at night.

The pain is still stemming from this one very pinpointed spot on my left shoulder blade sending daggers out in every direction from its center point.  Its prevalence has forced us to have to shift treatment gears. The pain is too great for me to risk going onto a clinical trial of another novel therapy that may not do anything. If it truly is the cancer causing this pain, it's only going to get worse if we can't stop the growth. 

Despite how difficult it will likely be on my body, we need to tap back into traditional chemotherapy in hopes that it will be just as difficult on the lymphoma and be able to shrink things down again. Right now, it’s more important for me to be on the Prednisone to help soften some of the pain by reducing some of the inflammation rather than tapering off of it to try to get on a trial with very little data behind it. I guess this is the emergency plan, which leaves me real unsettled.

I’ll still have a lymph node biopsied on Thursday. If that shows something other than HL, then obviously everything will change. I am holding out hope that it did morph into something else, as long as it’s something that is highly treatable/curable because that would open up a whole new medicine cabinet. I’m deathly afraid that it could reveal itself as a deadly, incurable cancer, one of those ones that was threatened to me on all of those Informed Consent packets I’ve signed that detail how chemotherapy drugs can leave you at risk for future cancers.

If it is still HL, as most everyone suspects, then I’m likely going to go onto two oral chemotherapy drugs – two that I was on last April as well. I did not handle them well then. I’m not sure what’s going to happen this time around. I’m polling around to my other doctors as well, but I know that my options are very few.

There have been some rough nights, and as I said, the pain can be so blinding that I feel desperation to do anything to make it stop. Last night, from the quiet of our bed I put it out there to the universe that I needed some kind of sign to let me know that it was worth going through this. Through tears, in a whisper, I asked for some kind of tangible sign that if I pushed through and endured this difficult time, let the harsh chemo do what it had to do, that it would be worth it. I wanted to know that if I continued to move forward that it would all be so worth it in the end.

This morning I woke up with The Beatles song “Blackbird” playing over and over in my head. It’s one of my absolute favorite songs. I think the melody is so innocent and beautiful and I love the idea of taking broken wings and learning to fly, as I feel that’s so much a metaphor for much of what I’ve been through: constantly adapting and relearning. It makes me believe that my moment to be free will still arrive.

Earlier this week my mother had brought over a beautiful porcelain box of her mother’s (my grandmother’s) jewelry. This afternoon I cut the tape that secured its top and dug through some beautiful chains and rings and fun earrings. My Gramma loved jewelry, dressing up, makeup, perfume, all the girly things in life. At the bottom was a gold pin in the shape of a feather. I held it in my hand and burst into tears immediately knowing that that was the sign I had asked for.

Feathers have been a very important symbol to me since my allo transplant, because though damaged, I felt that the experience gave me a new set of feathered wings with which to learn to fly again. I am still learning. Sometimes the wings are very heavy, but when they are light, all is beautiful. I love how delicate feathers are and how they symbolize flight ­– the ultimate freedom, lifting high above the pain and the fear.

See more of Kara's work at versejewelry.com
I wear a charm necklace that has three engraved circles on it, which a jeweler in New York City crafted for me at an outdoor market. I watched her tap each letter into the soft silver. One reads “peace;” one reads “strength;” and the third reads “life.” For a year I wore only two on the chain – peace and strength, the two words that I would always go to to get me through the tough times, drawing on my inner strength and striving to find peace in my body, my head, my life. I wore them on a thick silver chain, a long one that allowed the charms to fall at my heart, all through the allo transplant process. It wasn’t until I got through the first anniversary of my transplant that I removed the third circle from the box and added “life” to my necklace. It was then that it felt right. I had had a matching necklace with just a single small circle that reads “life” made, which I gave to my sister on the day her stem cells were infused into my body as a reminder to us both that she gave me a second chance at life.

I talk about my necklace because when I asked my very talented, very dear childhood friend who is a jewelry designer to add the “life” charm, I also asked her to add the sterling silver feather pendant that she often works with as I’m so drawn to feathers. She also added a faceted crystal quartz briolette and sent me all the information on the many things it symbolizes, including: “A power place from where the magic of the human mind can launch its dream creations into the universal machine so they can become a reality.” We both liked that one.

If one day I’m ever cleared to be able to, I’d love to get a tattoo of a feather on my inner left arm as a reminder of what I’ve risen above and that I still have wings to fly.

So, yes, seeing that gold feather pin was a reminder of all of that and more. My mom said that when she saw the feather in my Gramma's jewelry box, she was surprised to see it there and knew it should go to me as she divvied up the jewelry she left between my sister and me. I have no doubt that that was the sign that I was asking for. This time it was my Gram who answered. My Gram who we lost two years ago, also to cancer, while I was in the thick of my transplant recovery. Still too immuno-compromised and weak for travel, confined to New York City, I was unable to attend her funeral. I miss her all the time and this little sign that she sent helps me to know that she’s still looking out for me.

I’ve only once before asked for a sign. It was when I had to fly back to Houston for a PET Scan to see if the clinical trial I had been participating in had worked and if it would finally be time for transplant. I remember falling to my knees crying and saying that I needed something to give me the strength to get myself to Texas and be able to absorb whatever news I would get there. The morning of my flight I awoke to a tall bloom of a white peace lily poking out of a houseplant in our living room – a houseplant that hadn’t flowered in years. In fact, the plant was mailed to me by a friend to cheer me up when my paternal grandfather, my Peppe, had died in 2008. Well, there it was clear as day. That time it was my Peppe answering my call for a sign – in the form of a sudden six-inch stem and full white lily bloom jetting out over the plant that was otherwise only green leaves.

I had no question then and no question now. Those that we love never fully leave us. It’s true that they live within us and are there to guide us. I’d rather I could have them back so that I could hug them and listen to them in person, but it brings me some peace to know that their presence is still alive.

Tell me I’m a little woo-woo, a little out there. Tell me the ‘roids have gone to my head. Tell me the lack of sleep has me fixing delusions. Maybe it’s all partially true, but I’ve always been a dreamer, a creative, a lover of signs and symbols, kismet and simpatico. Seeing that feather brought back some semblance of hope just when my own fighting flame was starting to burn out. 


  1. What wonderful signs, proof that those we love and who have loved us never leave. When I left the hospital after my emergency surgery and surprise cancer diagnosis, there was a rainbow--in the Northeastern US, in the winter. I cannot say that I know what it means, but I too believe it was a sign. I still take comfort in it. You will be in my thoughts as you take on this newest treatment.

  2. Karin, I'll hold you in my thoughts/prayers on Thursday. (watching the "blackbird" video made me tearful, but in a good, hopeful way)--


  3. So beautifully written, and once again a post that brings tears to my eyes and goosebumps to my skin while reading it. Sending healing thoughts and strength to you!

  4. Like so many others, I discovered your blog somewhat randomly a year ago and have been reading ever since. I am always sending you my best "cancer-free" vibes from California!! Thank you for sharing your story, and for letting the world know just how strong, vibrant, honest, and courageous you are.

  5. Karin, that was such a beautiful and heartfelt post. It is so amazing that your grandparents have both sent you the message you have asked for to give you the strength to carry on. What a blessing in your life. Our family has also been through so much with my sister's battle with non-Hodgkins lymphoma - to the very edge and back several times. I know from her journey that it is very possible for you to get your illness under control and your health back. Don't stop believing it. Stay as strong and positive as you can. I will be praying for you.

  6. The moment the call came in that my grandfather had passed "Broken Wings" by Mr. Mister was on the radio. When I was hired for a real job it was playing again. When my Uncle died- there it was....my Aunt's passing, the Ultrasound of my daughters beating heart, a dear friend succumbed to cancer, any exceptionally great news or terrifying bad news it was there.....'Take these broken wings and learn to fly again, learn to live so free'. I thought I was losing my mind. Then my Grandmother passed- a ton of bricks flew at me faster than I could gasp for breath and the radio started playing the familiar tune. I buckled, I cried, and then I broke out with laughter as I knew they were there- together- watching over me and although they had passed they were definitley by my side. The day came I had to put my 16 year 4 legged best friend down. I tried like hell to find any excuse in the book- world- universe to not make it happen. Driving to the vet I turned on the radio and out of nowhere it comes on....loud and clear. I knew they were there all together giving me the final push to end my Bailey's misery and give her the freedom to run and play again in doggie heaven. Do I think your crazy? Hell no! I am happy you are able to perceive the signs they are sending you that so many people beg for when a loved one has passed yet overlook!! Stop looking for a sign and it will hit you when you least expect it.Only then will you get it. Much love to you! xoxo

    1. Wow! What a story. That song certainly has a special meaning for you, huh? Thank you for sharing what it's gotten you though.

  7. Thank you for this post, Karin. You radiate so much light and strength in these difficult moments. Listen to the signs from the universe. They are there to remind us that we are loved and supported, always. Sending love and light your way. HealeyOr (www.deepthoughtsbyhealey.wordpress.com)

  8. Dear Karin,
    So much to take in every day for you that seeing or hearing a visual sign is so meaningful. I believe in signs and have stories of signs in my life too. We have to believe that there is a higher power that we get strength from in different ways. Believe in yourself---you know your body and I'm sure you can recognize a sign when you see one. I pray you will do well on Thursday and if the news is not what you want to hear I know you will find a way to deal with it and continue to inspire us.

  9. Thank you for taking the time to comment and share your own insights with me. I so much appreciate it and it inspires me to keep writing.

  10. No, you're neither woo-woo nor "out there" but you are a kick-ass fighter who continues to inspire those of us reading about your incredible endurance. May your feathered signs continue to lift you and cheer you.

  11. Karin, I'm a believer in signs, I have asked for and revieved signs at times in my life. You know in your heart immediately that they are real,not everyone recognizes them... you are open to them. I'll be thinking of you Thursday.

  12. Karin, Your courage and strength are so amazing to me. You're fighting such a battle and although these are such difficult days, you continue on. You are an amazing, beautiful light in the Universe. I want you to know I pray for you and your family everyday. You are strong beyond measure. God bless you, always.
    Seth's Mom

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