A Shift In the Wind

So, it turns out that there was a reason my body started craving more sleep.

I never in a million years thought this would turn into a cancer blog, although I suppose nobody really sees that one coming.

Despite my 5-6 days per week workout habit, my belly started expanding last summer, even though I was losing jeans sizes at the same time. I also noticed some strange changes including a decreased energy level during my workouts and throughout the day, and sheet-soaking night sweats. I vaguely thought it was a combination of some kind of gastrointestinal problem and post-40 aging issues, so I ignored it for a while.

Two x-rays, one CT scan, 16 vials of blood and a bone marrow biopsy later, I learned that I have a mixed myeloproliferative disorder, or post-polycythemia vera myelofibrosis. That combination of large words I had never heard before means that I have a rare blood disease that is trashing my bone marrow. The growing belly turned out to be the result of, as articulated in my medical chart by my big shot doctor, an “amazingly large spleen.” Turns out that the spleen tries to take over the job of manufacturing blood cells when the marrow doesn’t want to anymore, and eats up all the extra cells made as a result of the disease, enlarging in the process. So while I’ve lost weight, I also look a little bit pregnant.

So, here’s the thing. There is no real treatment for this disease, aside from the possibility of bone marrow transplant. But, BMT is risky, so not generally recommended unless it is clear that things are not going well. I am currently being treated with a mild dose of hydroxyurea, a chemo drug that keeps my high blood levels in check enough to alleviate some of the symptoms. This drug has blessedly few side effects… I even get to keep my hair. There is a new drug, one made by Incyte, with the very catchy name INCB018424. This drug has caused significant buzz in the hematology/oncology world in that it seems to offer hope as the first potential treatment for this disease. Both of my doctors feel strongly that this is the right treatment for me, but it is still in clinical trials and not yet available.

I am very fortunate to live only three hours away from one of the finest cancer centers in the world; one that contains a pre-eminent expert on my particular disease. He is the lead researcher on the drug I need, and has offered hope that there may be an appropriate trial available for me this spring.

So, we wait.

I keep telling friends and family that this is the longest learning curve I have ever been on. The issue that challenges me the most is the question of how to explain it all to my kids. That is the main reason it has taken me this long to write about it. I truly believe that the best explanation always involves the truth, no matter how difficult, but this gets more complicated in a situation where even the experts don’t really know how this will go for me. I think that kids can tell when their parents are protecting them, and that their fears stemming from that silence will always be worse than the truth. I want them to understand what’s happening, but also don’t want to scare them needlessly. Sam keeps asking me to tell him that I’m “at a low risk for dying.” I believe that I am, based on my age, my history as a medical outlier (if there’s a category that involves 5% of all patients, I’m usually in it, a bizarre fact that is oddly common in my family.) However, I also need to stare realistically into the face of odds that I don’t like very much. I think that’s an important part of conquering this sucker.

For now, I’ll get my blood counts checked monthly with my local hematologist/oncologist, travel a few hours quarterly to see Dr. Big Shot, get out and listen to live music as frequently as possible, celebrate our kids’ successes and appreciate amazing support from friends and family that stuns me in its scope and seems to grow daily. I wish my kids would fight a little less and clean their rooms a little more, but in a way, it’s comforting that life goes on as usual.

The yellow bracelet on my left wrist inspires me to literally Livestrong, and I am determined to continue that throughout all of this. As Lance’s foundation manifesto says, “Unity is strength, knowledge is power and attitude is everything.”

And now, I’m off to fetch socks for Sam, conditioner for Abby and a library book for Hannah. Our regularly scheduled life continues.


11 responses to “A Shift In the Wind

  1. Kathy, in addition to my personal thoughts that I have shared with you outside of a public posting, I want to reiterate what others have also said; you are truly a gifted writer. I have relished many of your archived postings and look forward to many more to come. You are a writer who I read, yes, for content, often bringing a smile or a tear, but then I read the same posting again just to appreciate (and learn) from your use of language. I’m not an expert critic but from me you get an A+ in prose.

    Speechless. A heartfelt thank you for the encouragement. -KDF

  2. Kathy, I couldn’t agree more with your friend Don. You have a gift for writing and besides the fact that I really do love you, I also read and reread the things you post because it’s so well written. You do need to continue to share your comments. Were there any way I could make this journey easier for you, I’d be there. I have every confidence in your determination, optimism and care. You have so much support from your family and friends who celebrate how special you are. Livestrong !

    Amy, I have loved you like family since I was a geeky little 8th grader and your support means the world to me. Thank you, hugs, and hope to see you the next time I visit Mom and Dad. -KDF

  3. Life’s greatest challenges can be such beautiful life lessons for the person going through it and the people around them as well. I’ve always considered you one of my teachers in life and this is yet another example.
    Please know that if the need arises (which we all hope it does NOT), I will be first in line to have my bone marrow tested and would be honored to donate & participate in a BMT for you.
    Now, go cook up something fabulous and do some dirty laundry and continue to keep us posted! xoxo

    Love you, girlie! -KDF

  4. Hard to be so far away from you when I read this, because I simply want to hug you. So – from afar, consider yourself hugged and that will continue for a long time (so breathe from time to time). You have always had a since of calm in a storm – or at least you have appeared that way to me. You find your balance, you cherish the moments and live to the fullest and that, my friend, is a true inspiration and your confidence and optimism have always carried you forward and will continue to do so. The truth is a powerful thing and your honesty will help all of us; your kids, family, friends and peers………lots of love and positive vibes.

    Thanks, Kath. -KDF

  5. Pingback: Tenuous | Why Would I Sleep?

  6. Hello Kathy,
    I am 59 and was diagnosed with essential thrombocythemia over 20 years ago and now it has morphed into myelofibrosis – which it was always going to do. The doctors just didn’t know when. I am also a very far outlier.
    I am very healthy – more than most people my age. Do not take any medications, eat well, work to earn a living, enjoy my wine and care for my community. I also raised three boys during the last decades – you will hopefully do the same.
    At present I check my blood every two months, see my hematologist every six months, pay attention to my spleen which has enlarged to the mid line, but it isn’t painful or problematic (other than the swelling) and continue to live my life.
    I have not told my children yet because I am not sick enough. When that occurs I will let them know. As far as I am concerned, it doesn’t help, there is nothing they can do and I see no reason to upset their lives. My husband, my pastor, my dentist, my financial person and my lawyer know.
    I garden, read, cook, walk – all quieter things. I don’t exercise beyond the normal business of my life. Tiredness occurs with the effective anemia, so I nap if I can, if not, I just go slower.
    I hope things will go smoothly for you too.

  7. Hi Kathy,

    I found your blog today and have been reading it. I’m 29 years old and was diagnoised with Polycythemia 2 years ago and my doctors believe it is starting to progress to myelfibrosis. I just started treatment with Pegasys which isn’t going as we hoped yet! I’m glad I found your blog – it’s hard to go through this when there is no one out there that I know that’s going through the same thing! It’s nice to see someone else who understands and can relate! Good luck and I look forward to reading your blog!


  8. Great blogsite. I am newly diagnosed and have a lot to learn.

  9. Thank you for sharing your diagnosis, and your thoughts. I have just been diagnosed (3 weeks ago) with primary myelofibrosis and positive Jak2 mutation. I read your entry about your diagnosis and related to it so much. Puffy tummy, tired and then … the thoughts of, What? …whats next – after the diagnosis. As I work in the creative field, I have decided to make this a very creative learning voyage, inviting many to share. Please, if you would take a moment to see what I have put together. http://www.healingcreatively.com If you wish to post, or link to it, I would welcome it. If you wish to make suggestions please email me at my email registered on your site..
    Thank you and may sharing be a great part of your healing.

  10. My husband Harry has polycythemia vera and mylofibrous. Has extremely enlarged spleen recently had a 3rd bone marrow biospy which was negative. He has no marrow. He retired several years ago works partime and is very active in our church. We have 3 grandchildren all girls and our daughter and husband live close by and our son at the time is living home with us. Harry has had this disease for over 14 years these last 3 years have been very rough. He had 2 heart attacks within 4 days just cae home from stent being put in to it collasping and going to get it redone. He is forunate now to have a Dr. within our area and she is up to snuff on all things. He had blog for a while on face book but it was taken off and they are trying to get it back. Any information or disscussions please add us. You are a wonderful informative writer and I know he will be anxious to read more from you. We believe in prayer so if you don’t mind we will send soe up for you and your family.

    • Thank you so much… I have written quite a lot more on this topic in my CaringBridge blog that I started in September 2011 when I was hospitalized for a bone marrow transplant. I will email you the link to that. If anybody else would like it, please leave a comment to contact me and I will share the link.

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