Betsy's compassion and wisdom for patients and care givers.

Our friend Betsy Hall has been counseling Leukemia patients and their families for several decades.  Here she shares her heart and her wisdom. /D

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From: betsy 
Sent: Sunday, December 09, 2007 12:57 AM
To: [email protected]
Subject: Re: Support

Daniel,  Thank you for your blog entry (of today I think).  It is stunning and I am wonder if in writing it you have gotten any of the release/relief you sought? 

Good question!  Especially given how much we rely on our weblog as part of our path toward health.   This is an amazing practice; thinking about, writing and then observing what has been "up" for us - but which has not been articulated.  The process of "saying" the unsaid - and seemingly the unsay able - produces a distinct sense of relief.  If I had simply written this in a private diary, I do not think it would have the same impact as posting it where family and friends may read it.  I speculate that there is something about being public with one's process - ups and downs - that is salutary, even if no one writes in response.  Is this what underlies singing the blues?

 

 One thing you did not mention is what kind of support you personally are getting?   It's always been clear what a master of getting support for Bonnie (although as this disease has worn you both down) it seems clear that you have been about a zillion different caregivers to/for her.  How about you?

I am very fortunate to be working with Louis Vuksinick MD, a Jungian therapist, to deal my passions and my losses.  I am able to say anything and everything and look at my dreams.  In the process I have come to experience myself as a single visible twig on the deep rhizomes of humanity; I share experiences common to so many.  Fading is my sense of myself as a singularity, alone.  Death of a single human seems far less tragic when I get how we are connected and that our children and humanity, or at least the universe, will go on when we are long gone.

In my professional experience with cancer patients and families I find that few family members get support for themselves.   I have a support group for family/caregivers only---but it is always in jeopardy as it's always wanted but few take time out to attend or if they do, they feel like they still need to stay strong, keep most "negative" feelings to themselves, feel guilty about their anger or irritability or thoughts of "when it's over."  The toll is huge.  You say it so well although you explore the dark side much less than grace.  This is very normal. 

In the past few years Bonnie and I have buried 5 family members, 3 who died of chronic illnesses.  Then we lost everything we owned in a moving van that overturned and burned as we moved from Palo Alto to Cambridge.  We have also been at this medical-recovery-from-a-dire-diagnosis business for 5.5 years.  In truth, we are fortunate to have had years to work out many of our issues around death and loss.  Yet nothing seems to have fully prepared us for the feelings around knowing that we may lose each other, sooner than later.  For over a month I had a sinus infection that prevented me from TASTING anything.  I imagine this foreshadows what a life without Bonnie would be like.

I know of no other cancer that does what this cancer does for precisely the reasons of treatment you outline.  Most cancers either kill you quickly, or you go through horrific treatments and then you get better. Blood cancers are the only ones I know of where you can "beat the cancer" but at the expense of most all aspects of quality of life and where the results of treatment end up killing you.  It can be an endless slow downhill spiral.  And it just sucks, no two ways about it.
 

Your messages over the past years have been very helpful, especially since you deal with our exact counterparts every day.  What is so strange about this roller-coaster ride is that I feel strong and completely up to it when Bonnie is deeply sick.  This was especially true during the first 18 - 24 months of this last 30 month bout.  But whenever I can let down, I find that I sleep-in for 12 hours or more.  I simply do not want to answer the phone or answer my e-mail.  At these times I do the minimum: grocery shopping, laundry, cooking, filling the dishwasher, washing pots and pans, taking the garbage out and the mail in.  It can be two weeks before either of us opens the mail.  At one point we had a friend come in to help us wade through 8 weeks of unopened mail.  I take comfort in my sleep and my dreams - even when they are very strange or strained.   

Of late I have been taking joy when I have the energy to get new tires for the car or to rebuild Bonnie's laptop.  Bonnie poured tea into her keyboard last week.  Now her beloved Sony laptop has a 250 Gig hard drive, with 2 gigs of RAM, and silver thermal paste between the CPU and the heat sink.  It runs cooler and faster.  Fun. 

But I feel badly about myself when I do not call people back or respond in a timely fashion to their emails.  I can only hope that people get that it is not about them.  Some weeks I just do not want to be in conversation.  Mostly I do not want to talk about "how we are", again.  It would be so much better if people would read this web log to gather our health news.  I want to hear highlights from their lives and projects.  It is as if I want to join into their lives.  I am tired of our "news". 

 

I can not fathom how people caring for a person with Cystic Fibrosis or Alzheimer's or Parkinson's just keep caring when there is little possibility of recovery and no end in sight.  My counterparts provide care year after year after year.  On occasion, I feel guilty when I realize that there are hundreds of thousands such caregivers in the US.  Elsewhere in the world, there are folks without clean water or medicines facing much worse disease processes.   

I find myself wanting to ask you both if you feel the medical institution prepared you for this?  Nothing you have experienced is surprising to me---except maybe the strength of will and as you say grace with which Bonnie and you do all you do.   But the treatments, side effects,  growing toll on body and spirit---these I am all too familiar.   My experience is there is not enough counseling what REALLY to expect.   Although if there was---would you, would anyone do things differently?  Make different choices?

There was some attempt to "soften" the blow when Bonnie was first diagnosed with Myelodysplasia Syndrome.  We were told "it is not Leukemia" when in fact had already crossed over into full blown Leukemia by virtue of Bonnie having 22% blasts / cancerous cells in her first bone marrow biopsy.  On the other hand this was the first time we had met our hematology doctor at Stanford University Hospital.  Had I been in his shoes I am not sure if I would have opened our relationship by saying, "Hi I am your new doctor. You have Leukemia.  It is the most treatment-resistant variant.  Don't worry about it during Daniel's daughter's wedding in Carmel next week.  I will see you in three weeks, when I am back from vacation."  We understand that good medicine is only partially based on science and precise predictions.   

 

We researched many, many articles and the latest studies in the various medical journals.  All of our doctors have been surprised at how deep, on target and up to date our research is.  I do not think most patients or advocates are in condition to do such thorough research or to understand the Latinate verbiage and complex statistics that characterize medical journal articles.  But no matter how well-versed we were or how we could repeat the statistics - "As a MDS RAEB-t patient, Bonnie has about a 15% chance of survival " - we did not fathom the costs and stresses of surviving.   

From the beginning we have sensed or believed that we would beat the odds:  We would make it through 4 or 5 rounds of chemotherapy to a bone marrow transplant and survive even a mismatched BMT and get on with "disease-free" survival after a year of hard work.  And then life would be easy and breezy again. 

We did not consider that Bonnie would have such a hard time with the aftermath of chemotherapy.  Bonnie's health seemed to diminish with each successive round.  This is not a huge surprise as Bonnie started induction chemotherapy treatments at age 58 and she is a month from turning 64 today.  Younger is better when it comes to chemo and bone marrow transplants.

I certainly thought that after the bone marrow transplant + 200 days, we would cross the finish line.  I had no idea of what the BMT would cost Bonnie in health, much less the nature of everyday life with Graft vs. Host Disease and the drugs to treat GvHD.  The 3" thick Dana Farber Cancer Institute patient briefing book does not give a clear picture of life with GvHD and Prednisone.  But even if it were to do so,  and even if we fully got it, I speculate that we would have shrugged our "Type A" shoulders and forged on ahead. 
 

It has been Bonnie's role to choose, and mine to support her in her choices.  After all, it is HER life that is in the balance. 

I am not sure I would have made the same choice to fight for my own life, given the incredibly low odds for disease-free survival and the certainty of misery during the treatments.  When I say this Bonnie looks at me with curiosity and says "Why?  I have experienced almost no pain."   I do not think any of us really know what we will do until we are in that situation.   

I am dealing with some of these issues in one of my groups -- "living with advanced cancer."   Looking at palliative care and hospice and our cultures attitudes about "fighting and giving up."   I HATE that palliative care is often not used until the last 10 days or 2 weeks of life because patients or family AND especially our CULTURE sees it as giving up.   I HATE IT!   

I hate how when doctors give up they disappear, even the good ones.   They can be there every day through seemingly everything and then one day some veil drops and they are gone.   I hate how little many of them know about palliation.   I hate that most palliative care docs don't open private practices so they are more available to talk about dying, living into dying, ways death occurs with various organ failures, drugs for energy  (like ritolin), treating for depression (both patients and spouses), etc. etc.    Anyway,  we are talking about these things in my group.   So your writing was writing right into a space I am thinking/feeling a great deal about. 

Bonnie and I had participated in the palliative care for Bonnie's mother and my father.  Bonnie worked as a chaplain on a critical care cardiac ward in Bellingham, the summer before her relapse.  We see peace is possible at the end of a good life, and have helped people die well.  But it was only at YOUR suggestion that we got active and enrolled a top notch doctor to be our palliative care specialist BEFORE Bonnie had her third round of chemotherapy at Brigham and Womens Hospital two years ago.  We are fortunate to have the head of Dana Farber's Zakim Center for Integrative Therapies in the role of Bonnie's palliative care doctor. 

We have Bonnie's Chaplain from the Episcopal Divinity School officially enrolled as a member of Bonnie's care team at Brigham and Womens Hospital, with full access to Bonnie and her medical records.  Our chaplain is savvy about life, and living with cancer.  She is a cancer survivor.  Our entire medical and palliative care network are real, and realistic; no one is sleeping with Pollyanna.  We live in grounded hope.  The good news is, we are not dying now. 

Bonnie has met with her Chaplain and a group of her peers from the Episcopal Divinity School virtually every week over the past two years. I call it her "coven";  They often sit in a circle, light candles and have some sort of ceremonial center pieces and do incantations of Christian prayers.  They look altered and angelic when they are done.  Our Wicken friends would love the similarities. 

Bonnie is currently making good gains by visiting a Harvard University Health Services MD / Psychiatrist who treats Bonnie with acupuncture treatments every week.  We are both taking well targeted anti-anxiety medications, with good effect.

In sum, I have not heard of anyone who has a better setup for the difficulties of dealing with cancer and the aftermath of chemotherapy and a bone marrow transplant.  We are deeply grateful for all of the help and care we receive. 

Still we are surprised by our respective sense of fatigue and clear cut symptoms of Post Traumatic Stress Disease.  I guess there are some things, like the pains of childbirth and the fatigue of long-term chronic illnesses, that simply are not ameliorated by preparation.

 
I really appreciated your comments about the waiting room experience two years ago and now.   Do the two of you talk about ways this might end?    It seems like you've both lost the illusion of "life back to normal."   There appears to be a new normal that is underlying the place you write from? 

Nah, I am still in denial.  I sincerely believe we will get over this round of GvHD.  We will do our Qi Gong exercises and we will come back to feeling like our chronological ages.  Life will be normal when we move to the beach house in North Carolina in July.

And IF GvHD returns, we vow to be even more vigilant about getting Bonnie to the doctor at the very first sign.  We have already discussed with the doctor how quickly we will move for peremptory treatments if Bonnie gets diarrhea or vomits more than once in a week.

Now that you bring this up for us to look at, I have suggested that we make an appointment to see our palliative care doctor and our chaplain and talk about what we should do when the river of life carries us the other way, one day.  We have all of our papers in order.  But we have not looked at the "end game" for a couple of years.  I turn 60 in 2 months.  We need to consider that I may precede Bonnie over the edge of life. 

Which brings me back to the question of where you get support?    Bonnie is a great source of support, as is my music, my friends Hugh and Angelo, my sister and my mother.  I see that I need to re-activate my network of friends and help. 

 

Emotional?  Physical?   I find massage a great comfort.  It produces a sense of peace, but I have only gone once in the last 5 months.  hhhhmmmm   Are you working out?  No, except when Bonnie and I do Qi Gong.  We will restart our 30 minute practice again tomorrow. Do you see friends away from Bonnie?   I have in the past.  And Bonnie is now weak enough that I have to get someone to come and be with her if I am not in the apartment so she can get help to stand up if she falls. 

 

Do you look ahead to when more help is needed and who will provide it?    We had a bunch of friends close by and on campus who we could rely on but we need to renew our network of help as some have moved away etc.  

 

Do you have a friend who you can be completely honest about ALL your feelings? Yes, several.  And I need to make dates to see them.   I am sending prayers that you are, that you will.   

Thank you Betsy.  This message has been a great boon as it has created time and space to look where we are and what is missing and needs to be put back in place. 

 

As the road gets longer the pull is always for less and less and you need more and more.    
This is exactly what we are experiencing.  It is a perfect one sentence summary of the "care-takers blues" I posted earlier this week.

This is a time of great darkness in all spiritual traditions.  The solstice is close at hand.   We are in the middle of Hanukkah.  The journey to the manger is long.   The evergreen in the forest calls the women of healing in the night.  Prayers from all places.   Power to the light in the darkness.   May it glow for you.   love,  betsy 

Betsy, this is a great closing and new opening.  I had lost track of this season - both as the dark solstice and how we humans have created festivals of lights.
/ Daniel for BanD

Betsy Hall, Ph.D.

Comments

[Melanie Wright Bradford]

Hey guys. Missed a couple of weeks because Bill and I just returned for many days in Utah with precious family. His dtr, hubby (whom we love as our own, too) and the two cuties: Lauren 6 and Hayden 2 (complains about everything from AM to PM--terrible twos and teething--a deadly combo). It's a good thing he's so cute!

They live in Salt Lake City, having been moved by his company (Progressive Ins.) from Orlando last May. I hadn't been there since 1958 on a "Family Vacation." The first thing I noticed was not the Temple or Tabernacle, which you can't even see because of all of the tall buildings, now, but rather the great, wide, new streets and how "square" the street grid is, as complared to many other places I've flown into. The original planners of SLC laid the city out in perfect, NSEW squares, and had the forethought to incorporate miles and miles beyond the civilized part. NSEW has some big significance in the LDS religion. Now, SLC has not only the original temple, but a North Temple, South Temple, East Temple and West Temple. So, we saw a lot of temple buildings, in addition to a Ward (local congregation church bldg.) on every corner!

Just after landing, we went to eat luch (at 2:00PM), and I was surprised to see the restaurant was full! Kris (our dtr) said the locals go to the restaurants for afternoon snack because there are nearly NO pubs or clubs. Well, not only do they not imbibe, but they don't drink tea or coffee. So here's a restaurant full of patrons on a "coffee break" drinking, what else--water! We, of course had our usual Coke and Tea, it being still a little early for anything stronger, and evidently the server didn't drink tea or coffee either, because both offerings were over-processed, horrible muck! We just gave up,assumed the position, and revised our drink order to--H2O.

The terrain is wonderful, beautiful and all that the UTAH visitor's bureau advertises. Upon arrival, the temp was about 40f, and the weekend snow was melting off so fast that the grass was still green under it. I don't know much from snow, so I guess I wasn't expecting green grass underneath snow to happen anywhere else but here in Houston. Anyway, the first 2 days were filled with a lot of visiting, family stories, eating out and shopping. The 3rd day (Friday) we drove into the mountains south of SLC, where you can really begin to experience the rockies. We turned off at the Olympic village, but by then the weather had changed to snow flakes the size of a child's hand, and it was impossible to tour anything on foot without rain gear. As it was, I stepped out of the car to take a couple of pics of the ski jump ramp, which is so high it made me feel a little vertigo just to see how far down it is from the edge to where most skiiers land. Takes your breath away. I couldn't bear to watch even an olympian shoot off that thing and hang glide w/o benefit of wings until touch down. They must use magic!

But three snowflakes on my face left it dripping wet, not to mention how it wrecked my hair. So we drove home with me with the dog's towel around my head to keep from getting too cold.

As we ascended the mountains, the weather closed in and we couldn't see the beauty of the mountains because of the fog, which preceeded the blizzard that night!

The next morning, the only thing familiar was the inside of Kristi's house. The whole world outside had changed, and it was 20 degrees cooler. Really not too bad as that place goes, but plenty for me. I layered my clothes until I could finally not feel chilled. They live in Draper, which is a bedroom just south of SLC, but no one would know the difference if they were not from there. The real estate is unbelieveable, with her house being about 10 yrs. old, with 800 sq. feet per level x3. It looks like a townhouse just disconnected from the neighbor's, and it cost over $350,000. Thankfully they could afford it because of his position and her cleaver timing on selling their house in Orlando, just before the dip in real estate caused by the ARM debacle. She is the queen of clever!

The lifestyle there is very much "Stepford Wives." Nearly everyone there is white, upper-income with "stay-at-home" women and working men. There is almost no domestic help unless you import some family member or illegeal. There are nearly no "day care centers," for working mothers--I don't know what a single mother does there. She probably just moves to Texas, where we have plenty of entitlements and CDCs with daycares. I was struck by the fact that the wards are open 16-hours per day, every day of the week, but offer absolutely no day care facilities as such. One can only use the nursery facility if one is engaged in some volunteer project there, but Kristi says that doesn't mean the nursery is attended by a volunteer or paid employee either. Useless for moms. Even the LDS moms complain about having to obey the LDS no-birth control admonition and then be afforded no help, except for what one is willing to do for another. The women are not encouraged to become educated. What they are encouraged to do is marry at 18, settle down into 20+ years for childing rearing and emerge just in time for grandmothering.

Here, the men have it made. They controll the family lifestyle, predicated on how ambitious (or not) they are; they are not to be challenged regarding how they spend their "free" time, and they have no accountability to anyone except the others in their Ward, who check on them constantly to see if they're bringing up their kids as good Mormons. The Ward captain keeps in close contact with their tithing obligation, and if they fall a month or two behind, assumes the role of a bill collector until each family is "up-to-date."

Kristi's doctor is a woman who is married to a former Morman child, but they live there because they're both primary care MDs. Her doc told her about some of the under-cover lives these people live just to cope with the opression of the ruling religion.

Our last few hours there were a wonderful treat! We had an afternoon flight, so we had time to attend Lauren's "Chrismas Show" at her private school. (Challenger School--which is a small chain of private schools out in the Western states, but I must say, I don't know many 1st graders who can read, write and figure math as well as she and her schoolmates can!) But the Christmas show as just her class of 33, who had memorized about 10 little songs and one poem. It was such a flash-back to my own kid's programs, and even to when I was a kid. They wore big collars with bows just like we did back in Dinosaur days. I'm very impressed with this school, which doesn't follow the old, non-profit model. It is "for-profit," so it does as it pleases, and it does very well. Here was the only place I saw any non-homogenious gathering. Thankfully, here class was 1/3 asian, 1/3 african-american and latin and 1/3 white. Amazing mix, given the make-up of the rest of the town. OK, that's more like it, kid.

I'm home today just trying to regather myself before hitting the pavement tomorrow. I already know of one instructor who quit and another out with pneumonia, so I'll be back in classrooms tomorrow---probably day and night!

Daniel, you're a wonderful communicator. I would enjoy your commentary and your writing style even if I didn't know Bonnie. My hubby seems to be a lot like you, only he isn't good verbally. He's a deep river who always arrives at the point of any story long before anyone else, but even that too, he keeps inside.
One time when reading one of your postings last year during the first GvHD storm, Bill was wiping his wet eyes, just feeling the pain and frustration along with you. I chose not to ask him about what he was feeling, but I loved him all the more that he could be there with you in his heart.

I hope many people read your narratives. They are healing to all of us.

More love from Texas . . . Melanie

[Betsy Hall]

I am honored, moved---and as always, inspired! Thank you Daniel (and Bonnie). love, betsy

[Lexy Martin]

Dear Daniel and Bonnie....and Betsy Daniel, thank you for sharing your state and to Betsy for thoughtfully provoking your deeper thoughts. Daniel and Bonnie, you both touch me and Major so deeply with your highs and even lows. We recognize that you both so deeply share yourselves with your writing, and presence when we are blessed to be with you. It is a true form of love for each other and us. You are both such inspirations to us.
Daniel, like you, I believe Bonnie will recover again. I feel compelled to chide you on your lack of care of your body. For a man who is as smart as you, you must know that exercise and diet would actually make you feel better.
Major and I are both well and grateful for our love, family, and relative good health. Major suffers from serious back issues, but does what he must to keep the pain and degradation at bay by working out. The doctors have told him that an operation would kill his volleyball days and that the best for his back is to exercise at a high level to keep blood through the spinal column. Bless him....he does it. Me...after the shoulder surgery last year, I've vowed to stay healthy and work out with a personal trainer and perhaps have not been this healthy for many years. I hope I continue to have the good fortune to be able to do this for more years.
On the family front, both Jess and her husband and kids, and Ian and his step son will be with us for the holidays. It appears that Ian and his wife are at an end...although that saga is not done as Imelda is fighting it. But Ian has said, "enough...I am done." It's a sad story and I honor his choice and pray the two of them can make the break without hurting themselves or Vanji further. So, we are looking forward to a wild week with kids and grandkids this year. I can't wait to have them all here and am giddy with the joy of creating a wonderful holiday. Of course, it may be the best for me. Ian does not like the crassness of the holidays and refuses to participate. But everyone else gets a kick out of finding perfect gifts for each other and mostly enjoying the excitement of the kids. Of most importance to me is that we will be together. I'm hoping that Ian can finally relax and let us love him and return to his prior state of happiness. As one of our friends said about him, "he has covered his light for too many years" with his unhappy marriage.
So, this our news. Notice, I said nothing about work yet (good for me)....but that continues to nurture us as well and neither of us plan to retire anytime soon. Life really is good and we feel so blessed.
We pray for you both to continue in grace...each of you from your place of deepest comfort. We love you, Lexy and Major