Complex and a Bit Confusing

It has been a complex and pressurized holiday season. We got home late on Christmas Eve from our trip to the MD Anderson Cancer Center in Houston, Texas. We would have gone there sooner but for the difficulty that the Cancer Center and Ellen’s health insurance had in coming to an understanding.

This follows our visit to the Mayo Clinic in Phoenix earlier in December.

The issue is that the chemotherapy regime that Ellen was on has not been sufficiently effective, and she needs a different treatment program. Her cancer is what is called a platinum resistant tumor.

The treatment of Ellen’s illness is a very rapidly developing area of medical science, and there are many alternative therapies that can be proposed. At the end of November, Dr. Davis, Ellen’s doctor in Denver, suggested that she go to one or more leading cancer centers that are familiar with all the most recent developments, to see what they recommend. This could be simply a change of medication. Or it could be participating in a clinical trial of a new medication.

This process has had its difficult and painful moments. The Mayo Clinic at one point accepted Ellen into a trial of a very promising new medication. Ellen’s doctor here in Gunnison thought highly of this idea. But sadly, the clinic  called Ellen back to say the clinical trial was not going forward. This was disappointing to say the least.

There is so much to the details of all that we have learned and been told that it would be a very long essay. I suppose that I can try to leave the details out and focus on the key issues.

The first point is that there are many benefits of getting advice from a number of very very good doctors, with broad experience. There is also a possible drawback. We now have four distinct courses of treatment proposed, and there is no consensus among the doctors as to which is best. The issues are complex, in a developing field of medicine, and it is difficult to feel comfortable about making a choice.

We have several times thought we were coming to a decision and a plan, but each time we started to feel more comfortable, the apparent decision has tended to disintegrate. Ellen has been off chemotherapy for a month now while all this is sorted out, and we feel some pressure to make a decision and get going.

A second point is that we have had something of an epidemic of unfortunate fumbling by a number of these institutions. Paperwork improperly filled out, people forgetting to do things, promises not kept, and delay in getting things done. Some of the laboratory work that should have been done was delayed by mistakes, and the results are still not available. We have learned the hard way that we have to check and double check every move that is made. This adds to the stress, especially because it has led to delay, which we really do not want.

But we simply do not have the energy to get diverted by the temptation to finger point and complain. Our focus is in getting Ellen well, and we have no time or attention to spend on anything that is not contributing to that result.

In the meantime, Ellen is focused on getting in the best possible physical condition for the challenge ahead, and is exercising vigorously every day. She has worn the dogs out.

IMG_5716

So we will have a meeting with Ellen’s Gunnison doctor on January 2. Dr. Blanchet has broad knowledge and a very steady judgment. With her help we will, we are confident, be able to decide what to do.

In the meantime, we have decided to respond to all this stress and difficulty  in what we think is the best possible way: January 1 is our wedding anniversary and we are going to throw a party. Please, if you are anywhere near Gunnison, join us.

Cover

This is the cover picture of the invitation,

The rest of it says:

Please join us to celebrate our fifteenth wedding anniversary.

Luke Danielson

Ellen Pedersen

 January 1, 2020

6:00 – 9:00 p.m.

Food provided

Gunnison Valley Mentors Building

101 N 8th St., Gunnison, CO 81230

RSVP to (970) 641 4605

No gifts please. Donations to Gunnison Valley Mentors would be greatly appreciated.

 

 

 

 

 

3 Replies to “Complex and a Bit Confusing”

  1. Well, the good news is that a party is coming up! And you two have a lot to celebrate! The bad news is all the issues and complexity surrounding the next phase of treatment. I wish you the best on Jan 1 as you mark 15 years of devotion and happy times together. I also wish you focus and clarity as you discuss the options going forward with your doc in Denver. I hope you will find a path forward that you feel confident with. And then can proceed quickly! The roller coaster ride has been rough, but you keep hanging on tight! We’ll have you in our thoughts Wednesday! Ben and Betty

    Sent from my iPhone

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    Like

  2. Dear Ellen and Luke,
    Happy New Year to you both as we approach 2020 in just over three hours’ time. And congratulations on your fifteenth wedding anniversary tomorrow.
    Whatever you decide as your next step forward for Ellen will be the right one. It is a relief to know that she is in the best of hands. You have said that she has an excellent team of specialists to rely on. Will think of you on January 2 as she sees her doctor.
    Sorry I can’t be in Gunnison tomorrow. I will tune into the annual New Year’s Concert from Vienna, Austria as I always do. Such a good way to start a new year on.
    Love to you both, Anna

    Like

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