July Update 2013: Long time no write, but lots going on

Dear friends and supporters,

It has been half a year since we’ve updated our blog. Where has 2013 gone!?! If you’ve been checking this blog, well, gosh, thanks for being a loyal friend and fan. Life as authors and film subjects seems more interesting than what has happened lately, but a friend of mine suggested I update the blog to give you an idea of what is going on.

This blog had evolved into a travel blog in the last few years, but we don’t have too much to share on that front. Going backwards, I spend two beautiful weekends in June visiting Tuolumne Meadows in Yosemite and Sonora Pass to meet up with my 73-year-old dad, who is hiking the 2600 mile Pacific Crest Trail. He has been gone since April 5, walking 20 or more miles a day. Currently he is nearly at the Oregon border, having started at the Mexican border. What the healthy can do! And, in April, Ana and I went to Portland, Oregon for a fundraiser for Katie’s Kause, a great non-profit that supports Oregonian families with CF who have financial challenges. In May, our film was released on LinkTV, and though we didn’t travel for it, the television premiere brought excitement and positivity to our spirits. Before that, Ana and I had gone to Houston, Texas, so that Ana could join a clinical trial for her small bowel cancer. Unfortunately, it didn’t end up working, and only made her bald, so she hasn’t returned to MDAnderson after her three trips there.

Ana could say more, but I’ll summarize for her. She has tried one more chemotherapy since MDAnderson, and that did not work either. She is currently taking a break from the toxins and resting. Her tumors have grown throughout her intestines, and cause a great deal of pain with blockages. Thankfully, the transplant team has been so supportive, and gave her TPN (IV nutrition), since she can hardly eat anymore. Cancer is a very difficult enemy, and there’s almost nothing you do can stave off it’s progression. Ana is the best patient to have cancer, as her intimate knowledge of cancer genetics has helped her research as much as possible about next options. The chronic severe pain, the lack of energy, nausea and dwindling options is certainly taking a toll on her. She naps often, she has reverted to the simple life we once had with advanced CF (trying to eat, sleeping, following a treatment protocol, bathing and trying to keep her intestines moving). She is embracing the best medicine: an ongoing stream of good friends and supporters coming by, who are loving and cheering her along in this path. As long as the visitors are spaced apart and scheduled for 1-2 hours, she’s good.

We are doing the best we can with the situation. I am thankfully only working about 12 hours a week. My mom and brother are other members of the team, as is Ana’s husband. The rest of my time I spend with Ana or on my own healthcare. (thankfully all my GI cancer screenings have been negative, if we can trust that). Sometimes Ana and I just sit on the couch, staring at each other, smiling, like two lovers. We don’t really look like twins anymore, with my weight climbing higher and Ana’s dropping further. Every day together is precious. I am aware that things look grim, that even the Stenzel twins who have survived lung transplants and hikes and book/film tours and swimming races have a limit. Ana maintains hope in her tumor mutation analysis testing and potential for personalized medicine. We all remain optimistic and realistic. Ana states over and over, “At least I can breathe.”

Often people comment that Ana having cancer is so unfair, after all she has been through, and I guess it is a cruel “reward” of surviving with CF and being 13 years post-transplant. We still do not curse this experience, because she is 41 and it’s the price to pay for being alive. What we are passionate about is making sure all of our CF peers get their colonoscopies and GI workups, since in fact the risk of GI cancers is elevated in CF patients (especially post-transplant). Ana’s suffering must have a purpose if it spares others from going through the same.

One of our purposes these days has been to write an Afterword for the Second Edition of “The Power Of Two”, which will be released in paperback in the Spring of 2014. It has been a very therapeutic process to write about our last 10 years, all the highs and lows, and a lifetime of fears becoming realized at this juncture. We’ll keep you posted about the book release!

Anyway, I’ll keep updating this blog as things progress. It may no longer be “inspiring” and beautiful and positive, but it is the truth. There is the reality of illness, fear, decline, and dying. Life has all of these things.

Thank you for being there for us,

Isa (and Ana)

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8 Comments to “July Update 2013: Long time no write, but lots going on”

  1. Jeannette says:

    I met Ana at a gathering last year. She was very sweet. I know she is loved by many and I am praying for a miracle that she might beat this latest affliction.

  2. Peg says:

    Healing hugs to Ana & always my prayers & warm thoughts to all. Thank you for the update & Hi to my classmate Hatsuko!

  3. allison says:

    Ana came to speak at our CF Family day– she was absolutely amazing. My heart breaks reading all of this..I am praying– Both of you offer inspiration beyond measure.. You are both a true blessing to this Earth! Please keep us updated on Ana’s illness.

  4. Ben Black says:

    Hi Isa,

    This is Judy Black’s son, in case you need a reminder :)

    I teared up at the line “At least I can breathe.” It reminds me so much of my mom and all her transplant friends–they all had the same mantra. It’s something so important and so difficult to explain to non-transplant people. And it’s so worth it, no matter what struggles come after.

    I don’t know what to say that will help you, but I’m thinking a lot about you.

  5. Chris says:

    Hey Isa and Ana,
    As a fellow lung transplant recipient(near 17 years post transplant) I have enjoyed following your adventures through your words published on this site. I am happy to read the two of you are spending just as much time together as ever. Ana, I hope when you have a good day or hour that you will be able to report to us from the frontline of cancer. I never forgot one searing post that you wrote about a hospitalization-you had basically stated one must tread cautiously while admitted as one could easily be accidently killed while in the hospital. If only I could count how many times I have felt the exact same sentiment!! My thoughts and prayers are with you.

  6. Eva says:

    Isa- I am posting here as I just read Jenny’s news on Facebook and wanted to tell you that I am inspired by your life’s journey and can’t even imagine what this loss is to you as a twin… That I remember you both from school and have never forgotten you that I am glad you have had long lasting and loving friendships and that you belief in a purpose for all things is strong I am sure the awareness your book and film will bring to the world will touch I numerous lives… I am praying for you and your family.. Love Eva

  7. Candace Roney says:

    Dear Isa,

    My heart breaks for you, that with all of the battles you and Ana fought together and the accomplishments you shared, you have lost her. You don’t know this but I lost my twin brother, one month short of our 41st birthday together, to AIDS. Losing a family member is hard for anyone. Losing a sibling, especially one near your age, a bit harder. Losing your twin is just something you never think of, because even from day one, you have gone through life on the same path. As I have always said, “Growing up as a twin teaches you to share, because you don’t even get your birthday to yourself!” You and Ana shared everything, but I know she would want you to continue with your incredible advocacy, in her name.

    Take care and know that many people are thinking about you.

  8. Shannon Kelly says:

    So beautifully said, Isa. I’m thinking of you and your family. I hope you continue to find peace and beauty in life. Ana lived very well, for all the challenges. She was a remarkable woman and will be remembered fondly even by those of us who never had the privilege of meeting her in person. (Shannon Kelly, heart transplant 2006, and daughter of heart transplant recipient)

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