After the Diagnosis: The New Normal

Daily life flies into brick wall. You go along, you don’t feel well, you finally decide to get some tests and at the end of the tests you get the Diagnosis: Philadelphia chromosome positive, Acute Lymphoblastic Leukemia (ALL), B-cell.

Not knowing what to think, you take a day to prepare, not knowing for what or how long or anything.

The first few days here were so busy that I hardly had time to breathe. Things are slowing down now. The bone marrow biopsy confirmed the presence of leukemia. A spinal tap injected chemo directly into the spinal fluid. They tested every little function of my body, including an ultrasound of the heart. When I mentioned I might have a sore throat it prompted a throat swab and high isolation for two days so that Steve and Elena both had to wear masks and gloves and gowns to be in my room. It was a great relief when that came back negative.

I have a Hickman Line, basically a type of central venous catheter used for the long-term administration of substances such as antibiotics, blood transfusions, nutrition, or chemo. The Hickman is attached to me permanently and it spares me the bruising pinpricks of numerous blood draws.

I have a cocktail of things regularly pumped into me. And they draw out blood for testing on the same line. My IV pole is now my tether and my constant companion. I have named him Herman and I try not to mind his little beeps and sounds. I drag him around for a walk twice a day, 10 rounds around the hall equals a mile. Two miles a day is my goal for now. I don’t always make it. It is a love hate relationship, but through Herman, I receive not only all the chemo (well some is oral too) but also life saving fluids, anti-nausea, anti-fungal, antibiotics, etc etc.  So far, I have also received several  blood transfusions through Herman. Blood clotting agents, Vitamin K, whole red platelets. All those times you have given blood…I am the one getting the benefits now. Thanks for that, by the way.

The steroids they give me cause an insulin resistance that spikes the blood sugar. So for the first time in my life, I submit to blood sugar tests and then get an insulin shot before I eat. I am humbled by this, knowing home many people walk around with full blown diabetes everyday. We all have our battles.

I can’t say enough good things about WHERE I am. If I had to come down with this, it is the best place to be. A friend of mine emailed Brian Drucker, who is one of the highest authorities in the field of Leukemia. Here is what he said:  “The treatment for acute lymphoblastic leukemia can be pretty brutal, but the disease has a reasonably high cure rate. A bone marrow transplant might also be considered if she has a good match. Since she has the Philadelphia chromosome,  Gleevec or one of its relatives would be used. UW is a great place for her to be.”

Strange comforting words, in their own way. I just have try and survive the treat. I am on a Gleevec relative called Cyclophoshamide and the newest and best medicine, so the big deal now is to keep me tolerating the chemo while it is killing the leukemia. I hope onto the doctor’s comment that “the leukemia cells are literally dying by the hundreds of thousands right now.” Along with the rest of me.

We have a new definition of Home. Home to the doctors here is a place they can send me which is within 20 minutes of the Seattle Cancer Care Alliance (Fred Hutchinson Center). This treatment for Acute Lymphoblastic Leukemia is interspersed with hospital intensive chemo and blood transfusions for 5 days, followed by me being able to go “home”. Then for 2-3 weeks, we watched the blood counts and hope they come up. When they do, and I feel better, they will hit it again, back in the hospital.

So part of the new normal is a small cottage that has been made available to us. The island community, has helped us create a place we will call the Cottage; And that will be home for awhile. By summer, I may be ready –hopefully–for a stem cell transplant. That will require a good 2 weeks of hospitalization and then more time at the cottage. My goal is simple: If I can fight back all the things that are trying to kill me, and my body can recover, I may granted a leukemia-free life again.

Jack the dog has gone to live on the island with Josh and Julie, our house sitters. I want you all to know how deeply I feel the connections that I have been showered with. Thank you. My nights have been so difficult with nausea that the days also pass in a blur. Thus, I hope you might understand that I am not up to entertaining visitors at this point. The best for me really is email or snail contact right now, rather than phone calls. Steve and the daughters have been utterly amazing, so tender and connected. I am indeed a blessed woman. And I am most grateful for the love and support of my friends and community. So many of you have written some of the most wonderful things I have ever read. My own responses will be slow and will fight with fatigue and nausea. But keep them coming. They mean so much.

 

 

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Elena has to suit up to be in my room for 1st 2 days.

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Steve takes a map on bench, in full gear.

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One of our many chats. I could never do this without my family.

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Jack and Steve say hi from the canal.

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My favorite artwork here.

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Getting ready to go bald.

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Mariya, Steve, Elena .. .
superstars!

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11 comments on “After the Diagnosis: The New Normal

  1. I have to say that seeing these pic is so wonderful! Now I can visualize more. You’re on it, Shann. Keep up that incredible energy that you bring to all of life. Love to you all, Lenore

  2. Shann —

    Just a quick check-in from Maine (I’m Alexandra’s friend — the one she wrote to you about) to say I’m out here pulling for you and with you all the way in soul and spirit. Alexandra called me last week to tell me about what’s going on with you and to ask if I’d be available for support since I also had ALL as an adult (age 33) and a stem cell transplant (5/8/04 — I turn 9 this year!). I KNOW what you are going through sister! I KNOW!! It’s a rough road but I can see from your posts and pictures that you have got what it takes to kick this thing in the ass. I know you are tired, overwhelmed, and need to focus all you’ve got on getting through this so don’t mind about getting in touch with me (unless you really want to because I’m available any time). Just know that I am out here and that you and I are connected already. You can do this my friend!

    Huge love swirled up with all the most positive healing life-affirming energy I can muster —

    Erin Callaway, Survivor, Thriver, and your personal cheerleader!

    • Thank you amazing Erin!!! I cried the happy kind of tears reading your post on my mom’s blog. We love stories like yours right now – they fill us with hope, optimism, and resolve. You are a representation of everything we are focusing our energy on right now. Thank you for reaching out. Keep thriving!!!!!
      – Mariya (Shann’s daughter), mariya.porten@gmail.com

  3. I love you so much! You have over the years been such a golden light of inspiration and family love to me. You look absolutely beautiful here and you shine through all that pain and nausia. I am so thankful that you are getting great care and have your beautiful family around. We have been hanging tight with Link’s father Joe as he fights against lymphoma. He has been stimulating his blood cell production with an awesome bone broth which I can send you the recipe along for those times when you are at the cottage. I am so glad you are able to write so that we can all get a better picture of how you feel. You will be in our prayers daily and we will write soon, snail style!

    • Beautiful Kelan, I would love the recipe for the bone broth. Whenever you have time, you can email it to mariya.porten@gmail.com. Thank you, thank you. Peace and comfort to Link’s papa. And lots and lots of love to your cutie-pie clan. We love you guys. Thank you for the love and support. It means more than I know how to articulate. – Mariya

  4. Dearest, dearest Shann,
    I still see you standing in the bow of the canoe on the Chatanika, August 1984,, reading the river for all of us. I see you helping with the fire and the meal that night, including drying some shoes on a tripod, me nodding off as Michael and Jeremy braided my hair and my daughter Ann slept with her head in my lap. (We had just landed from North Carolina a few hours before the start of this trip) Change scenes and I see you in a dance leap at the Howling Dog, Or, I see your serene yet glowing with life face across the candlelit table of some restaurant in Fairbanks (but soon everyone there was dancing in a conga line with Mr. Steve Porten at the head of it, winding through the kitchen, finally back to our table. I believe that line included but of course Steve, you, Coppie, Dave, Jerry, Martha, Charlie Brown, Bruce, Joyce, Julian, Roger maybe Mark Fejes , , , ,)
    I remember you in so many scenes from Fairbanks, and always at the heart of the gathering. I miss you, sweet girl,and value so much my friendship with you, even though it’s been a long while since we saw each other Even so, I know of your work as an ocean ecologist and a novelist,and I’m so proud that you have been living your life so true to your heart, including having your beautiful daughters.
    I wish you did not have to go through this current difficulty. I am glad your devoted husband, daughters, and friends are your loving helpers.. .Please know that you are going to be in my heart and thoughts every day., and I’ll keep up with your blog.
    As for me, I’m still in NC, living in Greensboro with Jim. Very happy to be in the company of two great dogs, two-year-old siblings rescued from the same litter, German Shepherd/Golder Retriever mixes, the male named Ocean, the female Jasmine. My daughter Ann and husband Brian live on the coast (Morehead City) just a few miles from the Atlantic. There also reside my two grandchildren, Ashley (9) and Will (5). With them I remain the child I have always been, and answer to the names Grandmama Coppie and CopCop. Ashley keeps me busy drawing horses for her latest stories, and Will with anything involving melee. .

    I LOVE YOU, DEAR SHANN,
    Coppie

  5. Shann, I am so sorrowful about your condition. I am in a situation where I take prescription meds for chronic pain, but would be willing to give them all up and cleanse my body in order to donate bone marrow if I’m a match. I would do anything to help make you healthy again. Please let me know if there is anything I can do. Love, your cousin, Mary Jean

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