February 14, 2014

This morning I received a call from Arlene. She told me her husband of over 50 years passed away Wednesday evening. Bob was a loving father, a proud grandfather, and a devoted husband. He will be greatly missed by his family, friends, and colleagues.

Arlene hopes to share some of her experiences and reflections soon, but for now she will be spending time with her family and, as she puts it, “processing.”

–Renee Payan Wong
Webmaster, Support4Change


Bob and Arlene

When My Days Are Good, Bad, or Sideways

February 4, 2014
If you haven’t been following the blog in the past several months, here are a few earlier posts that can give you background in understanding what I write today.



A few days ago I wrote an email to family and friends with the subject of “An Update by Arlene.” I’ve decided to use it for readers of the blog:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Dear Family and Friends,

Our daughter wrote to a number of people about some of the changes that have been happening in our lives and I want to share my perspective on them. Also, some of you did not receive her note because you weren’t on her list but are on mine.

As I believe you know from our Christmas letter or other sources, last fall we had to adjust our lives to Bob’s diagnosis of myelodysplastic syndrome with a life expectancy of perhaps six months to a year.

Then last week we discovered that his white blood cell count was very high, which could be caused by any of a number of things in addition to infections. To address the problem, the doctor suggested we should not do any more chemo — after each of two sets of chemo four weeks apart he ended up in the hospital — but he could try a new drug called Hydroxyurea.

It may offer a few weeks or a few months more if he also has blood transfusions once or twice a week. Since Bob wants to do everything he can to live as long as possible, he is giving this drug a shot. With the drug, there is even the hope that he may be around for longer than that, but it is highly unlikely. Without the drug, the time remaining is fairly short.

The consequence of this uncertainty means that our days are up and down and sideways as we try to judge how well he is doing. Does greater weakness one day mean the drug isn’t working? Does slightly greater strength the next day mean the drug is working? It is a guessing game with which everyone in this kind of situation is very familiar.

Fortunately, he doesn’t have any pain other than neuropathy in his feet and legs, a condition for which he has been stoic for years. His main problem seems to be general weakness and the need for oxygen much of the time.

Yesterday he asked me to drive him to his blood transfusion session and I thought it meant that he was through driving. Today, when we went to sign papers for selling our house, he insisted he drive and seemed a little more energetic, saying “Don’t take away one of my last pleasures in life.”

And speaking of driving, the one bright spot in all this is that on Saturday I started driving again — after more than seven months. My body’s negative reaction to Botox seems to have run its course and now my neck can actually move from side to side enough to see cars coming! It makes it much easier to run errands.

Like other families in this situation, we are finding both difficulties and strengths in going through this together. All our children have been or are coming to visit and recently both of my brothers have come out to see us. He enjoys visitors and phone calls to help him remember all the good times and pleasure he has had in his life.

Incidentally, you may have heard that Woody Allen once said he didn’t mind dying; he just didn’t want to be there when it happened. However, having gone through the dying process with my parents, I know that caring for the person who is dying can be a blessing in itself. So I know I wouldn’t want to skip over this experience even if I could.

Yesterday Bob and I were talking about the fact that one of the disadvantages of dying from a heart attack is that you don’t get to say goodbye. It has been good to have time to talk about our lives and what we have meant to each other, and to also straighten out some of the financial issues that are easier to deal with when both people are there to go through them together.

For example, signing the papers for the house today was a thrill for both of us. The house appeared on the multiple listing service a week ago and today we accepted the counter bid from the wife of the director of Bonanza. Like the other two who considered our counter bid, she sent a lovely letter saying why she wanted the house. One of the people even included a picture of their children. Guess it is true that it’s a seller’s market right now.

When I asked Bob a couple weeks ago what I was going to do after he was gone, he said that he didn’t know but that I was surrounded with good examples. And of course that is true, for this retirement community, like most, has a high percentage of widows, many of whom live full lives despite their various aches and pains.

However, I suspect that going from being married to being a widow is the part that’s going to be hard. As the saying goes, “When one door closes, another opens, but it can be hell in the hallway.”

Thank you all for your good wishes and for keeping us in your hearts and prayers.

Washday isn’t what it used to be

January 21, 2014
 Reflecting on how families respond differently to illness, and the inevitable changes to daily life.

It has been eight days since I’ve written about our journey with a terminal illness and now it’s time to again put my thoughts on paper (that is, into the computer).

Soft ocean waves

Families React Differently to Illness

Bob is talking on the phone with his brother for the first time since all this drama began in September. None of the other brothers have called or visited, though they have sent a couple notes that said they were thinking of us.

Not coming to visit seems strange to me, as my brothers and their wives are currently visiting from Ohio and Washington. As my younger brother said, he wants to visit before he has to come for a funeral.

However, ever since we got the diagnosis last September, when I have suggested that Bob call his brothers and talk, he replies — very kindly — that his family is different than my family. He doesn’t say my family walks this path the wrong way, but his comment is a good reminder not to expect everyone to react as I would react to situations like ours or as I think they should react.

In any case, tomorrow my daughter will come with her children and stay for a week. She wants them to see their grandfather before he gets too sick.

So we are planning a number of activities that will hopefully give them good memories of their grandfather.

Watching Our Lives Change From Day to Day

If every day, all day long, I were to think about what may happen and how soon it may happen, I would be worn out — and sad all day long. Instead, each day I experience whatever happens the best I can and notice whatever lessons I may be given to learn.

For example, today he’s not participating fully in our laundry “party” and I tell myself that he needs to rest more. I try not to say, “He is getting weaker and closer to dying.” Instead, I try to think of his inaction as needing the space to manage his life the best way he can.

By “party” I am referring to doing the washing. You see, for several years, beginning about the time I had my last back operation several years ago, Bob and I have been doing the washing together. He would bring the dirty clothes from our bathroom clothes baskets to the garage and dump them on a large table. It was one of those big wooden wheels that are used by construction companies to wind up cable and wire — marvelous for all kinds of garage jobs.

Anyway, I would sit on a chair and sort the clothes, throwing them into plastic baskets. Then I would choose which one got washed first and he would lift the basket and dump it in the washing machine. He would also make certain the rinse would be run again before putting it in the dryer and then fold the clothes.

True, he didn’t take the clothes out of the drier the way I would and they were a bit more wrinkled than I like, but at least they were done. In sharing this chore, we had a lot of fun and created several traditions that we enjoyed together.

Now I can see that our washing tradition is changing. While he did carry the laundry to the laundry room, he let me put the clothes in the dryer and even fold them myself. I did it the way I like, but it wasn’t the same without him.

Our traditions are changing to meet our changing circumstances. And it feels right to let them change without complaint. What good would complaining do?

Approaching the Natural End of a Marriage

January 9, 2014
 Navigating the uncharted waters of  cancer and marriage.

Last month, Renee, my webmaster, wrote a note explaining why I wasn’t able to post anything until my turned-upside-down-life settled down a bit. Things are still unsettled. However, I have decided to take a stab at writing again, because I hope that writing will help give me the perspective I need to move through this period of my life.

“This period” is a phase of life that happens at some time to all marriages in which the partners have committed to love “until death do us part.” Unless both die together, that is true whether the relationship has been long or short, fulfilling or miserable.

The parting is happening because my husband of 54 years (an anniversary celebrated on January 2) has incurable cancer.

Fortunately, as I wrote in an earlier post, we have moved into Villa Gardens in Pasadena, a retirement community whose support was tested the day after we moved in. Bob had developed pneumonia and sepsis (a blood infection) throughout his body. It was almost a month before he went from emergency room, to intensive care, to the direct observation floor, to a regular hospital room, to skilled nursing care in the facility connected to Villa Gardens, and finally back with me in our apartment.

Now he walks without walker or cane, and is even driving again, which helps both his spirit and our ability to accomplish tasks that need doing outside the apartment. However, it is only a matter of time before he will have another infection. Right now, Bob is getting blood transfusions every couple weeks, and we have no idea how long he will receive them before they no longer work to keep him alive.

It is a state of uncertainty that is particularly interesting because more than twenty-five years ago I co-founded the Wellness Community Pasadena, which is now called the Cancer Support Community. It was one of the first in a global network of local affiliates and satellite locations with the mission of providing services so that “no one needs to face cancer alone.”

While Bob is not interested in participating in a support group, I am using what I have learned in almost ten years as both board member and workshop leader with that program to get through this time with him.

What I have learned up until now doesn’t make this period of life easy, but it does make it easier. As I’ve written before — when sharing the metaphor of a friend who worked with cancer patients and was then diagnosed with her own breast cancer — studying diving and actually doing it are two very different things. You can read about the effect of wind and velocity and how to control your body when you enter the water. That is all theoretical. It is only after you have left the diving board that reality strikes you, cold and wet.

Since breast cancer is often curable, this metaphor of a pool can work, since one can exit the water from the pool’s sidess. When there is no chance of cure, it feels as though the diagnosis is more like a path we’ve been walking together that ends at a river. We are unable turn around.

The only way forward is to enter the river. Where the water goes, how many rapids we will need to get through, and how long it continues are unknowns.

Fortunately, there are friends and family standing along the banks of the river who periodically throw us life preservers that keep our heads above water as we navigate this uncharted territory.

Incidentally, you will notice that I didn’t title this “How to Face the End of a Marriage” because I don’t know how. I certainly don’t know enough to advise you on what you should do when you find yourself in a similar situation.

Furthermore, like many people, you may be uncomfortable reading about approaching death. However, if my writing can give me some perspective on the inevitable parting of a long relationship, perhaps these posts may also help you, or someone you know.

One final note: Between posts about what is happening in my life, about once a week I will have Renee tell you about earlier posts that you may not have read. Someday, hopefully before Bob dies, I will return to write posts as I have in the past.


December 11, 2013


This is Renee, Arlene’s webmaster, Gal Friday, and good friend.

For anyone who has read Arlene’s blog lately, it is apparent that this year has been a time of many big changes for Arlene. She has shared her struggles with a chronic nerve disorder (cervical dystonia) and now her husband Bob’s leukemia diagnosis here on the blog. (for more, please read: Life Happens When You Are Busy Making Other PlansA Pain in the Neck in More Ways Than One, and A Long Life Isn’t Always Possible) Recently, she and Bob have moved from their home of more than 40 years to a local retirement community.

Because of the tumult in her life, for the first time in about 14 years, Arlene and I have not been in almost daily communication about the Support4Change website, the blog, her books, or the other many irons she has always had in the fire. (Really, her varied interests and abilities are quite remarkable.) Last week, we were finally able to catch up, and she asked me to share a brief update with you.

She is settling in to her new home, doing the things we all do when we first move into a new place: discovering what she forgot to bring, buying new housewares, and finding the quirks of her new place. However, much of this has been a distant second to ensuring that her husband Bob recovers enough from a recent health crisis to be able to move from the nearby rehabilitation facility to their new apartment. Walker-proofing the home (no area rugs, bathroom safety equipment, etc.) has led to new considerations.

Once things are settled a little more with her new life, Arlene is hoping to blog about some of the challenges and experiences of moving to a retirement community and changing health issues. Please stay tuned…