I will deliver the critical news first, like a headline.
Bone Marrow test shows no cancer; all white blood cells are from donor.
That is the truly good news I have to share. That means no mixed “chimerism”. In my bone marrow, there is no trace of my old cells. It is just Mariya’s cells doing their work, leukemia free.
I can’t say it’s been easy… but considering all the scary things they tell you of the things that could go wrong, I feel so damn lucky and grateful.
I know it’s a long time. I had the intention and even the need to write. For the first week, I was teased by feeling pretty good. I thought to myself, is this it? Have I somehow escaped the side effects? I am thinking this as I am running my hand through ¼ inch of soft downy new hair. The next morning I notice most of that hair has landed on the pillow. By the next, I am once again totally bald. I was told this would happen, a result of the last chemo and radiation. No. I am not going to escape the side effects.
There followed the flinty all-encompassing period of time listed in the literature as “fatigue”. After 7 months of this, I have found there are layers of fatigue, and I am talking about one of the very bottom layers. I wanted to sleep nearly 24 hours a day, and had to fight for the ambition to do anything else but that. Standing up would make my heart race and blood pressure drop or jump to the point of feeling like I might faint (and sometimes I did.) So even getting around the house meant walk a few steps –sit, walk again, sit and then go lie down. One thing I did do for some reason that I cannot articulate, other than I needed a huge graphic story of the human condition, was watch nearly 60 hours of documentary and mini-series about World War Two, (Ken Burns: The War; Herman Wouk’s The Winds of War and War and Remembrance.)
During all this time the docs were calm. They aren’t a real communicative lot. They could have said things like –“well, of course you feel terrible, you have a stiff case of anemia!” Or, “look at all these drugs you’re taking and their side effects. Fatigue is top of the list of every one.” What they did tell me was the blood tests looked good and I showed no signs of GVHD. The only thing they worried about is the return of the CMV which should subside with antibiotics and the strengthening of my new immune system.
A few days ago, I woke knowing that I had to grit my teeth and go against the inclination to rest all day. Participating in the life of the world was a tremendous struggle at first but it’s gotten easier. Though Fatigue is still very much present, it no longer rules my life with such an iron fist. Slowly I am building stamina once again.
Eating remains a challenge. On the plus side, I have an appetite and no weird taste effects or nausea. But on the side of anorexia, I weigh 110 lbs., and my stomach has shrunk to the size of a walnut. Plus eating takes energy. The girls have been diligent; alternating stern lectures with deliberately eating in front of me, making helpful yum yum noises, and whipping up calorie and protein rich foods that are easy to get down (a shake made by Elena delivers about 700+ calories, Mariya’s cashew-based soup innocently slides more than 500 calories down my gullet and Steve’s Grand Old Diner serves up the standards, like bacon and eggs with toast and lots of butter. Since no one else eats this way that I know of, it is a bit weird to focus on trying to gain weight. I don’t have time to mess around with anything that doesn’t pack a big caloric punch or I will lose more energy than its worth.
Time for the 2nd Headline:
Mariya returns home to Tahoe, after 3 months in Seattle. Elena is going to Cuzco, Peru in March.
This week felt like closure. The graft has been successful! I may have CMV and anemia and other temporary things, but I don’t have cancer. It’s time for Mariya to return to her home and back to her life, starting with a certificate in Personal Training and moving on to a nursing degree. And we are all delighted that Elena, who put her plans to go to South America on hold when I got diagnosed, is going to Cuzco, Peru to get classroom experience and a certificate teaching English and working at a hostel. Her goal, for years has been to get perfectly fluent in Spanish, written and spoken. So, she is going, alone on an adventure and the three of us couldn’t be happier or more proud.
I am left with the simple monumental task of getting well again. Re-learning the basic skill of learning to be social, after so much time in isolation or just with family. Being able to walk enough to fill my soul. I am eager to regain the carelessness of life, not being so fragile, or so metered with my energy. Go slow, my body will remind me. This next part of the healing process opens the package of long term side effects and looks inside. I know my body and mind have taken a beating. I know I have miles to go before I feel “normal”. Just trying to get grounded and stop thinking things like “why are the pumpkins out, isn’t it still spring?” will be a big step toward belong in the world again.
Ok. More coming and in a more timely fashion. I will just end with one little happy dance and the title to one of my favorite songs: Gracious a la Vida (thanks to life).
so, so, so happy for you! What a journey you’ve been on! Take it easy and enjoy your re-entry and all the love being sent you!
Thank you! We feel the love.
Shann- I am overwhelmed with emotion as I read this. I am so thankful you will be here, on this earth, with us, changed in ways we can only imagine, to continue your beautiful new life. Love from us both, Bun
Sent from my iPhone
What wonderful news Shann!! I am so happy for you and your family and all of your friends. We are all celebrating with you and very grateful. 👍😃❤💜💙💚
My heart is fluttering for you, Shann! So much love to you and Steve and the girls. wonderful news!
Fabulous news! So happy for you! Can’t wait to see you, Steve and Jack back in the neighborhood. Wishing you all the best that life has to offer.
Hooray!!! Shann this is SO good to hear! Much love to you all as you all take steps toward your next adventure(s). xoxo
What good news!
When you get your strength back, I hope you will think about writing a book…not on your sickness, but maybe on life or whatever you feel like writing…you write so beautifully and fluidly, and you seem to love it, too! Anyway…this was a wonderfully joyful chapter to read…and I am so very happy for you and your family!! Keep on…looking for the next horizon!
so happy to hear your good news, you write with such clarity and truth. Holding you in the healing energy you emanate, Shann, much love to you, Lynne
What a blessing… for so many people to have the gift of having you back.. David and I have followed every one of your and Steve’s blog entries. We have kept you in our hearts and on our Altar, calling all angels to continue to support you back to strength. So thrilled to hear such wonderful news for such a wonderful woman, family…. I am continually touched Shann by your and your families ability to so remarkably communicate the places that you have gone in this journey.
check out monolaurin for the CMV
Welcome back, Shann
Shann — so, so, so happy that your engraftment has taken a strong hold. Incredible. Miraculous. Wonderful. Once again I am compelled to let you know that I KNOW what you are now experiencing — the fatigue, the difficulty eating enough to put the weight back on, the need to move slowly, the desire to move faster…my dear husband, who was my primary caretaker, would do all he could to help me get the food down. I would drive him CRAZY with how little I was able to consume during those first few months post-transplant. I ate what I could, when I could, even if it was one thing through most of a day (like gallons of orange juice) or piles of toast. Reading your words brings me right back to that time in my life…I learned some of my most important lessons during that time, about patience, and TRULY listening to my body. Some of those lessons have stayed with me. In fact, just this morning I was talking with a friend about how I still, after 9+ years, abide by my body’s messages (almost) all the time. This will be a time of slow-ness for you, perhaps of some frustration. Take it easy friend. There is no rush. Your body is healing itself, slowly lifting itself up after a massive thrashing. Move slowly. That fatigue that feels so heavy is your body saying “give me some time.” LOVE TO YOU. One day you will find yourself past all this.
Shann, I am truly speechless I am so thrilled by your news. I love you all so much. What a TEAM! Keep up the good work! Eat, move get well and come to Mountainaire to regain more strength next summer. XOXO
Sent from my iPad
Woot woot! Shann, we have thought of you every day, sending love and good wishes. And that flow won’t stop now, as we continue to hold you and your family in our hearts as you make these next steps in recovery. Hugs to you all!
Absolutely wonderful news Shann. You are now a month and two days past your re-birthday and this news is just sooooo great. We think of you often. Had a nice trip around the San Juan Island Golf and Country Club with Steve this past Friday and he shared the great news. Nothing but good vibes from our home to yours.
Love you. Kerwin & Margaret
Once again I read your blog Shann here at the Borestone boathouse, heart in my throat, eyes filled with tears. Roller coaster emotions…and now a huge huge sighhhhh and more tears…of deep gratitude to the universe, for Mariya’
s cells, for the amazing work that allopathic medicine can help happen, for your amazing daughters and husband, multiple thanks for so many supportive friends, beings and entities that helped our Shann stay with us. I could go on forever saying thanks….so I will. You’ve helped me understand the importance of this. love, ‘Z
My heart sings with joy as I read this! Sharing your journey is such a gift, Shann. Thank you. I send abundant love and well-wishes to all. Ruth
I am in awe of you, Steve, Mariya, Elena and modern medicine. What an amazing, amazing journey. Not everyone has your stamina and fight. I would hope I could do what you have done but I am not sure I could. I am so happy you will be returning to our little community. Love
Dear Shann, we are so thrilled to hear the news and have been keeping close touch with your progress through your blog. We are so encouraged by the recent development! Your blog has been so fascinating with all the details of what you have experienced over the past 7 months. I didn’t realize I could leave a reply right here on your blog until today. I hope you know that our love and well wishes have been flowing your way all along. Your family has been so amazing! And we are so, so happy for you and for your continued recovery. Lots of love and Hugs from the Schwinges – Susan, Scott, Devon and Grant
Best of all possible news. Enjoy your walk on the healing path and relax into your new life. Hallelujah!
So happy to hear the good news, Shann! We prayed and prayed for your healing and it looks like our prayers were answered. May God bless you as you continue to heal and keep your family strong as they help you to reach your goals.
love and support from the eastern front
your words are beautiful, you are gracious and thankful to all who stand by your side. You keep taking those steps forward, you are living your life in the moment. you are alive.
Wonderful to hear! I’m so thankful. The effort you’ve made to keep us all informed (and so thoughtfully and beautifully!) through these many months is monumental and we so appreciate it. May each day bring steps forward until you can re-enter your island world with the trees and waters you care so much about — as much as we all care about you! love, Susan
What GREAT news – brings tears of joy!!! We’ve been praying and rooting for you – and will continue as you gain strength.
Susan and Henry in Fairbanks