Day One

As many of you have experienced, life can be a series of struggles. Ellen struggled through chemotherapy. And when it turned out that the chemotherapy was not adequately effective we went on journeys to two of the country’s leading cancer centers, the Mayo Clinic in Phoenix, and the MD Anderson Cancer Center on Houston.

Then there was the challenge of getting the doctors to form consensus over what to do. And when that was accomplished, the final challenge was to get the new treatment program scheduled and authorized by insurance, complicated by the fact that we changed insurance December 31, so we are dealing with an all new insurance company.

All this was taking considerable time, and our concern grew about having been out of treatment for so long. And it has disturbed us both, but Ellen most of all. It was costing us sleep, which is unusual, as we have through this long process mostly been sleeping very well. (This is thanks in part to getting a lot of exercise and being physically tired at night).

Last night we had grown quite concerned and did not sleep well.

And this morning started in the same note, of fruitless calls.  And it looked like another lost day, as the authorization has to be given no later than 11:30 am if the medication is to be available the next day.

But at about 11:15, we got a call; the efforts of our hospital here had borne fruit, and we are off and running.

So Ellen is on a 28 day cycle of chemotherapy, and tomorrow, January 8 is Day 1. And Ellen will be infused with a drug called Taxatere. This will happen on Day 1, Day 8, and Day 15. On Days 8 and 22 she will also receive an immunotherapy agent called Avastin. So this is basically likely to be every Wednesday for some unforeseeable time into the future.

We are very happy that we are to this point. There have been so many last minute surprises and disappointments that we have learned to count on nothing except for the constant support of our friends and family, and some really dedicated health professionals. But we really think this is going to happen.

It has been nice in many ways to have some weeks away from chemotherapy. Ellen looks great. Her energy level has rebounded. She has been building her strength and conditioning for what lies ahead. We have enjoyed some time together and skiing every day. We do just love to have time together.

We do not know what lies ahead. We imagine that if chemotherapy once every three weeks is really hard, that chemotherapy every week may be harder. And we are concerned about neuropathy: Ellen has had a hard time maintaining feeling and balance in her feet, a condition caused by previous chemotherapy.

On the other hand, this is a different drug, and because it is weekly, the doses are lower. So how weak Ellen will be and how much her activities will be limited we just do not know.

We will see.

After 2-3 cycles of this, and a lot of laboratory work on tissue and other samples, and genetic testing, the plan is to return to the MD Anderson Cancer Center in Houston to see where all this stands and get some guidance.

We know that you will stick with us. And we know that we will need you.

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4 Replies to “Day One”

  1. Luke & Ellen – Wishing you the best we can on Day One.

    We just finished reading a longish essay of Wendell Berry’s, titled ‘The Uses of Adversity’; it amounts to a long meditation on two of Shakespeare’s play, ‘As You Like It’ and ‘King Lear.’ Both about fundamentally good people beset and driven into retreat by evil actors in the world. The good people in both plays retreat into nature – a forest in the comedy, a bleak moor in the tragedy – and there find the place where worldly evil is overmatched by natural good. I could not help but think of you, in reading that essay – and the psalmic line slips in too: ‘I lift my eyes to the hills, whence cometh my help.’ You undoubtedly do well for you, Ellen, as well as for all of us in the universal struggle of good to emerge over evil, when you ski out into the hills every chance you have….

    – George

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  2. Dear Ellen and Luke,
    What a lovely, upbeat note! It is very good to know that Ellen is now on a new course of infusion. Your message expresses such tremendous relief that it is infectious. I have made a note in my diary when Ellen will be off to your local hospital. As I have said before, we are with you all the way and are only sorry we can’t walk with you to the hospital. I have a next-door neighbour who was treated with immune therapy. He is now well. We were vey worried for him as he has young children.
    Thank you so much for keeping us so brilliantly posted. We are keeping our fingers crossed for you. Love to you both, Anna

    Like

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