Ann Kulp’s memorial service will be held on Saturday, September 6 at 2 pm at Providence Presbyterian Church, 9019 Little River Turnpike, Fairfax, Virginia 22031. A reception at the church will follow the service.
In peace,
Karen and David

It’s been a number of days since I wrote and, as usual, a lot has been going on.  Early Wednesday morning Mom called me in excruciating pain and said something needed to change.  I called hospice and told them they had until noon to find a way to manage her pain.  (My Mother Bear came out.)  I drove out to Greenspring and met with the hospice nurse who had the idea that Mom’s pain could be best managed at the inpatient unit because there is always a nurse on duty and a doctor assigned to each patient.   I was fully prepared (and a little scared) to hear Mom’s denial of that plan and SO pleased to hear her agree to go.   She was at the Arlington hospice by noon and the nurse was working to address her pain immediately.  Her assigned doctor followed in soon after.  (Note to self and others: There is a time and place for Mother Bear’s appearance.)  Coincidently, the hospice is less than five minutes from my house so that has been an added convenience!  David arrived to help out and oversee Mom’s care on Wednesday evening.  Mom did not want to be left alone so I took Thursday morning and David took Thursday afternoon, Thursday night, and all day on Friday while my family all took Kate down to UVA.  I returned on Friday evening and took that night shift.  David and I have both been here at the hospice night and day since then.
I would love to say that it was smooth ride from then on but it has been a rocky road.  She has experienced bouts of break-thru pain in her spine and hips, coughing difficulties, anxiety, restlessness, and continued weakening of her physical body.  The staff has been incredibly helpful and responsive and she does not seem to be in any pain now.  The room she is in sounds a lot like a collection of coffee percolators with all the chest rattling going on. She no longer responds to anybody and “sleeps” all of the time.  We wonder, somewhat existentially and/or scientifically, at the reasons for her prolonged suffering, knowing that there is no answer.  We are aware of all of the conventional wisdom regarding dying and we also know that we aren’t the ones in control.
Thanks for your thoughts and prayers,
Karen and David

Those are the words that I find myself saying and writing to people who ask about my mom’s condition.  Hospice has had a real challenge in managing her pain and that has added complications to these few weeks.  Was it that her body was collapsing faster than expected or that she was downplaying her pain or something else?  Her body is finishing its usefulness as her digestive and circulatory system begin to join her respiratory system in their failure to fully function.  She is sleeping and resting more, she is no longer eating, and has weakened considerably in just the past few days.    She isn’t up to much in the way of conversation.  If you really want to stop by for a few minutes, please call first (703)644-3004 and someone will let you know if it is a bad time.  This morning she was answering the phone herself but I don’t know how long that will last.  She has truly enjoyed the cards that were sent – thank you for those!
I think it is fair to say that she is in her final days. It’s important to remember that we are spiritual beings in human bodies.  She has led an amazing life with her focus on spirituality always in the forefront of her choices and priorities.  She is going to let go of her body and her hummingbird spirit is going to take flight.
Your thoughts and prayers are still appreciated as she prepares for her transition and for her family, as we prepare to watch her spirit flutter and fly.
Thanks.
Karen

Well, it is truly wonderful to see how many friends care so much about my mom!  While she appreciated all of the attention of visits this week, it seems that we underestimated how fatiguing it would be.  So, we are going to try something a bit different for the time being.   She would love to receive cards!  If you are available to help out with occasional errands or favors, please include a phone number or email address in a card.  She will get back to you whenever it is necessary.  Her address is 7444 Spring Village Drive, #101, Springfield, VA 22150.  If you want to visit, please limit it to about fifteen minutes.
She now has a home health aide every night and that is becoming more routine and comfortable.  We are still exploring options for daytime aide needs.   With her sudden decline in health, it has been difficult for both of us to keep up with what is most appropriate to meet her needs.  To complicate it even more, sometimes she still has her bursts of energy!
With gratitude,
Karen

On Monday last week Capital Caring hospice came and introduced themselves.   We have a social worker, Faith, who is very thoughtful and communicates about resources and options, and two nurses, Ellen and Denise, who are so kind and attentive.  One of them will stop by a couple of times a week to check in.  This week we start with a CNA who helps with lunch on Mondays, Wednesdays, and Fridays.  On Tuesday, Mom started on oxygen full time.  Throughout the week Mom was just so fatigued and sleeps.  She had small groups of friends visit on both Monday evening and Thursday afternoon.  Mom usually feels much better after dinner into the evenings.  On Saturday morning she woke up confused and a bit disoriented – not something we would like to see repeated and, as we all know, highly unusual for her.   I spent the night with her and during that time her lung infection came back with a vengeance.  Saturday night was truly awful for her as she was coughing and gasping and very uncomfortable.  On Sunday morning some antibiotic and steroids were prescribed and some cough medicine which seems to help.   A bright light in the form of my cousin and her god-daughter, Debbie, came to visit on Sunday afternoon.  She has stayed over two nights and been a wonderful replacement for me.   I have also enjoyed her company immensely.  Yesterday, we met with a couple of home health organizations and settled on Right at Home to provide night-time coverage from 9 pm – 9 am.  We will start with them tonight. For the time being, there seem to be a supply of friends and family waiting for an opportunity to come provide companionship during the daytime hours.  If you are interested and available to visit sometime between 9 am and 9 pm, please let me know.  I will try to get this organized.   The best way to contact me is at kjgrumbles@gmail.com.   Alternatively, you can reach me by phone at 703-303-4925 (cell), 703-248-9684 (home), or at mom’s (703-644-3004).
With great appreciation for your thoughts, prayers, and support.  It is tangible in so many ways!
Karen
 

After my son and daughter have taken turns with blogging for me I decided to put in a word or two from my own mouth…. what’s going on and how it feels.
The basic news of “progress” has subsided and I am now simply enduring whatever comes next, mainly periodic pain in spine and cervical tissue plus continuing shortness of breath…. and now oxygen.  My resting oxygen is 97 but when I walk to the elevator and dinner it drops to 69!  Whoa!  I trail 25 feet of tubing around the apartment which can be a bit of a hazard!  I have a portable attachment but haven’t tried it out on the rollator yet since I don’t feel up to ‘hiking’ to the dining room.  Appetite and stamina not back up to par by any means. I do enjoy the company of friends, chats, and reading when I can stay awake!  The lazyboy is a huge temptation as you might guess – when wiped out most of the time.
Lots of visitors who have spent nights here and offered immeasurable help with household and preparing small meals. If food is offered I tend to find it easier to eat … Need to work on appetite.  David was here for a spell last week, then my childhood friend for a few days.  The friend from Holland who introduced me to the bowls was here today, thanks to two friends who very kindly brought her over from MD.  Several relatives are wanting to visit but I am not always up for company.  Very sporadic health.  Up one day; down the next.  Be sure to call first.
Hospice folk have been here about 3 or 4 times to help me get set up.  Wonderful. I appreciate the many ways they can intercede and give suggestions.  I have a number I can call day or night that can bring a nurse.  No “security” or “911” to hospital!  That would take me off of Medicare for the day!  Such complications!
My spirits are generally pretty good and my kids have been fantastic as you all can verify!  David’s girls are presently here with their maternal grandparents and cousins for a good week, and then will be with Karen and me for a spell.  They phoned last night and filled me in on their day.  David will be here Aug. 11-13 and fly home with them.
What might I enclose as a pondering?  I’ve missed offering those bits and pieces of odds and ends, so will offer the following.  This begins with a personal reflection from childhood and is followed by a selection from Madeleine l’Engle that reminded me of my own when a child.
Me:
I was certainly no more than three or four and still in a crib.  I had awakened and was pondering my fingers and the texture.  Somehow I was led to wonder what other peoples’ fingers and thumbs might be like… and from there:  What would it be like to feel as another person felt?  What was the “other” person’s experience of ‘being’ like??   Like me?  or different?  I pinched my fingers and was consumed with texture, puffiness, with ‘otherness.’   I can still conjure up that image, even today.
Madeleine:
Then I ran across Madeleine l’Engle’s piece from A Circle of Quiet (the first of her series of three books), and it is also included in her book Glimpses of Grace with the subtitle “It is I.”  Somehow it manages to connect with my experience.  Perhaps you have one too….
Says ‘l Engle,”I first became aware of myself as self, as Pascal’s reed (“Man is only a reed, the feeblest reed in nature; but he is a thinking reed”), when I was seven or eight years old.  We lived in an apartment on East 82nd Street in New York.  My bedroom window looked out on the court, and I could see into the apartments across the way.  One evening when I was looking out I saw a woman undressing by her open window. She took off her dress, stretched, stood there in her slip, not moving, not doing anything, just standing there, being.
“And that was my moment of awareness (of ontology?): that woman across the court who did not know me, and whom I did not know, was a person. She had thoughts of her own.  She WAS.  Our lives would never touch.  I would never know her name. And yet it was she who revealed to me my first glimpse of personhood.
“When I woke up in the morning the wonder of that revelation was still with me. There was a woman across the court, and she had dreams and inner conversations which were just as real as mine and which did not include me. But she was there, she was real, and so, therefore, was everybody else in the world.  And so, therefore, was I.
“I got out of bed and stood in front of the mirror and for the first time looked at myself consciously.  I, too, was real, standing there thin and gawky in a white nightgown. I did more than exist.  I was.
“That afternoon when I went to the park I looked at everybody I passed on the street, full of the wonder of their realness.”
Perhaps you can reflect on the meaning of ‘being’ or ‘isness,’ or ‘self’ and what it means.  I find it powerful, especially when we realize how we are part of the whole of creation.  Who am I?  Who are you? Who is the whole remainder of earth’s being?
My profound thanks to Karen and David for filling in for me – in a far superior way with medical info than I ever could.  I’m sure you’ll hear from them again e’er long!  Prognosis is poor but outlook remains one of living life to the fullest.  A challenge for each of us!
Ann

So, Mom and I met the radiation oncologist (Dr. Bijar) this morning.  He was kind and helpful in reframing some of the considerations for her treatment.  It is amazing how beneficial it can be in having different insights from different specializations. Mom is just too fatigued to take on any treatment right now.  An observation that the doctors make repeatedly is that she looks good for the burden of cancer that is evident in the scans.  People frequently comment that she looks so good! Regardless, she is just worn out.   We were reminded that it can take six to eight weeks to recuperate from whole brain radiation for those over sixty.  It has been three weeks since hers ended.  Another point to keep in mind is that the nature of cancer is that it weakens you and causes you to lose your appetite.
Last night Mom decided to challenge herself at 11 pm with a walk around Greenspring, including stairs. (Who does these kind of things?!?!)  Not only did breathlessness ensue, but chest pains that did not diminish for quite a while.  So, this morning when I went to get her, those were some the symptoms she was experiencing.   (To be fair, her walking and fighting the fatigue with movement is an EXCELLENT way to combat the cancer and side effects of radiation.)
After discussion with Dr. Bijar it was decided that she would wait a week or two until she felt up to doing the radiation.   Her back pain is pretty constant but stays on the mild side most of the time with low doses of meds.  She is going to try to be more cognizant of her pain in order to manage it better.   He recommends that she go with the ten day treatment (considered short course) targeting her lumbar/sacral region.  She is unlikely to have significant bowel toxicity in the small intestine with this treatment.  Because it will be below her stomach, there shouldn’t be any additional effects to her digestive system.  He will not target her hips, although there is pain there, because he wants to avoid bone marrow as much as possible (he doesn’t want her blood to become toxic because that takes 6-8 weeks to clear up!).  He also noted that she had diffuse involvement in many areas of her spine; in other words, lots of cancer but NO fractures or protrusions affecting the nerves.   They only want to target the areas where there is pain, however.
After lunch at Greenspring, I had to leave to take Kate to a dentist appointment but Mom’s plan was to call Dr. Heyer (oncologist) about her decision to wait on the radiation and her concern about chest pain.   She ended up driving over there on her own because she wanted peace of mind.   They tested her breathing and discovered that it drops significantly when she is walking.   No surprise there as she needed to stop four times in the circle to the cafe and back for lunch but insisted on joining me anyway.   So, she now has been prescribed a tranquilizer for anxiety in hopes that might alleviate some of the breathlessness.  She will also start taking a different antibiotic tomorrow for the redness that remains on her skin where her port was, before she had it removed last week.   She learned this afternoon that her right lung is still clear! Yay!
Hoping she gets some gentle, cleansing breaths and that she can rest and, perhaps, recuperate.   Thanks for all the kind words to both of us!   I am also taking some gentle, cleansing breaths.
Karen
 

Mom has been completely fatigued and without energy since the whole brain radiation. Whether that is from the radiation or the cancer is hard to tell.  Both the pulmonologist and the oncologist seem to think it is the cancer.  We saw her pulmonologist (Dr. Williams) on Monday. Her lung infection, which the doctor referred to as post-obstructive pneumonia yesterday, seems to be responding to the antibiotic since her breathing capacity has improved a little bit in the last week.  From last Monday’s CT Scan at Arlington Hospital Dr. Williams was also able to tell us that the tumor in her lung is larger which is obstructing her airway somewhat.  There also appears to be some indication of microscopic growth between her air sacs and blood supply termed ‘lymphangitic’ which can also cause feelings of breathlessness.  So, she is back on Decadron (steroid) for the next ten days to help her feel a little better.  We will see Dr. Williams again in a couple of weeks.
At this morning’s appointment,  Dr. Heyer took a look at last Thursday’s MRI of her thoracic and lumbar spine and recommends radiation on her lower back.  We will meet with the radiation oncologist on Thursday morning to map out a plan.  We both have questions and concerns both in her getting the radiation and in NOT getting the radiation.  Mom will have to weigh the costs and benefits to her cancer progression and her quality of life yet again.
Additionally, the brain radiation seems to have affected her hearing so she needs her hearing aids more than before.  Wouldn’t you know it but one of her hearing aids is not working properly.  She has an appointment with the audiologist tomorrow afternoon.  If somebody is available to take her there, please let her know.  I have a scheduling conflict.
So… this is a frustrating and discouraging time with too much coming at her with little respite or improvement.  Just go ahead and give her a hug.
Karen
 
 

Dear friends – As I last wrote you the news from the radiation oncologist was most encouraging although he warned me of extreme fatigue.  It happened and six days later I was wiped out – the day before the reunion with my “Danny Grads.”  And on the seventh day – ha! … I required rest and Karen had to drive me to the reunion over near Baltimore. There was great excitement as the nine of us convened for the first time in two years and represented states from California to Maryland. What a gathering as we weren’t sure all would make it.  We had 2 print-outs each morning for reflection that set our thoughts for the day.  We spent time exploring our attitudes and coping strategies in dealing with declining physical/mental abilities.  We shared ideas/resources/models for Memorial Services — to help our families or friends. (I shared my collection of choices.) One session was devoted to retirement communities. One of our number is a published poet and she read a number of poems to our delight. Especially meaningful was one called “Reunion” which she wrote ten years ago at our gathering in Maine. Another DG collects an assortment of humor and kept us in stitches at off-moments. We had ‘Catch-Up Sessions’ so we could share what is most important in our lives right now, what has brought joy, hope, what are we looking forward to, and addressing fears. One person is exceptionally gifted in leadership so guided us from one session to another plus breaks. Many contributions. In the evening I brought a short devotion, the final evening being a Healing Service on the order of Iona Abbey’s in Scotland. Another person had been there on pilgrimage too, and helped plan it.  It was very touching. We ALL need healing. Coincidentally, Shalem was on pilgrimage on the Isle of Iona last week; they prayed for us at the actual service in the Abbey and we prayed for the pilgrims. A wonderful reciprocal prayer. This was all held at the Conference and Retreat Center of Bon Secours in Marriottsville, MD in beautiful surroundings with walks, a pool, a labyrinth and a pond and oriental bridge with attractive gardens. (View from my window)
Very reluctantly we parted on Friday, hoping to regather again in another two years…
I spent the next night with my childhood friend Nancy in Ellicott City (I was 2; she was 3) and we had many laughs and stories to share as we visited in her magnificent courtyard till 11 pm, listening to the music of the night….which I discovered I could actually hear! In fact I heard the frogs while at the reunion and hadn’t been able to figure out why I didn’t hear them when I settled in for sleep – without my hearing aids!  
Who’s who from left: Jane from Chicago area; Jackie from Riderwood, Silver Spring, MD; Joann from Pasadena, CA (poet in our midst); yours truly; my friend Nancy; Jan from Cincinnati; Kay from Kansas; Debbie from Roanoke; Sprookie (means ‘freckles’ in S. African- not sure if I remember the country!); and Allison from Nashville.  
Saturday Karen came to bring me home and then unpacked all my belongings – clothes and reunion packets. Such a help as I was terribly wiped out. Not sure how much was radiation and how much other factors, but as the days wore on it became apparent that there was something else. Yesterday Karen took me to the pulmonologist appointment as I was too weak, and he was concerned that I may have a pulmonary embolism so had me get a dose of Lovenox right there and then sent me for a CT scan of my chest “STAT!”   Word from the radiologist and pulmonary doctor revealed that I did not, but might have pneumonia. He put me on Augmentin for ten days.
Today’s appointment was with the oncologist. Karen goes along and takes notes and filled in quite a bit with info on her mother… that I was having walking problems, breathing problems, and had had swollen feet on Saturday, etc. He checked me out and my cough in the middle of it produced evidence that confirmed the  diagnosis of infection, agreement on the Augmentin, and a subsequent check of my port for chemo….had it been flushed lately? No.  Let me see it.  Well, the line to it is quite red and  inflamed. He was alarmed and scheduled for it to be removed….. tomorrow!  That is not the cause of any infection, he said, but not something to be tolerated. Karen was going to spend the night since it is a very early arrival, but – bless his heart – a neighbor learned of it and volunteered because he always gets up early (and Karen is a half hour hour away). She will meet me at the hospital around eleven or so.  As if that isn’t enough, I am also scheduled for an MRI of the Lumbar Spine (w/and w/o contrast) and Thoracic Spine (w/and w/o contrast) on Thursday at 6:45 pm. I learned that the procedure this time will take 90 min.!!  45 min. each!! Please think of me. My claustrophobia may have been mostly ‘licked’ but this is about double the time I’m accustomed to! Think I’ll take a sleeping pill, not valium!  And I can!
Next on the docket –  you mean there’s more?!  I see both doctors again next week, the same as this week, Monday and Tuesday. But – you know, I couldn’t feel more confident. They are fantastic and give whatever time is needed and are so caring. And they relate to Karen so well too. I have to be sure i’m not treated as her grandmother!!
From here on, please mark your calendar with all the energy you can muster to send my way.  Don’t know when I’ve not been able to complete something I began but this is “it.” Maddening, but I confess that I stubbornly insisted I could do it all, and kept on keeping on. I’m very weak and could barely walk to the cafe at noon so asked someone to please bring my dinner. Have spinal pain off and on and interrupted sleep. Head is itching and driving me crazy with hair down to dozens of hairs. Forgot and went out on patio to greet a couple with my beanie on and suddenly recalled – Yish!! My wig!!  The man looked as though he had seen a ghost! As for my fatigue, I’m paying the price, I suppose, but – I’d do it again. Friends and special events are worth it in the end. 🙂
Here is one of the morning reflections.  I imagine you might have it.
-Sunday Sunrise Prayer-
Father, Mother, God,
Thank you for your presence
during the hard and mean days.
For then we have you to lean upon.
Thank you for your presence
during the bright and sunny days,
for then we can share that which we have
with those who have less.
And thank you for your presence
during the Holy Days, for then we are able
to celebrate you and our families
and our friends.
For those who have no voice,
we ask you to speak.
For those who feel unworthy,
we ask you to pour your love out
in waterfalls of tenderness.
For those who live in pain,
we ask you to bathe them
in the river of your healing.
For those who are lonely, we ask
you to keep them company.
For those who are depressed,
we ask you to shower upon them
the light of hope.
Dear Creator, You, the borderless
sea of substance, we ask you to give to all the
world that which we need most—Peace.
—Maya Angelou

Although I still have one more radiation treatment to my noodle –
I saw the radiation oncologist today and was told:
–  The whole brain radiation has most likely stopped cancer growth and killed what’s there
–  I’m not likely to have any more problems with my brain (cancer problems, that is!)
–  Yes, it’s always possible, but likely? no.
–  As for my morning spinal pain in a.m. for which I take Tylenol just once a day?  Don’t be bothered unless it changes course … and I can monitor that in the next ten days. If it worsens then I will most likely get two more weeks of radiation on the lower spine. What is interesting is that I had such pain prior to chemo, and the chemo seemed to stem the pain. Will discuss it with Dr. Heyer on July 1, having more information.   
Just wanted to share the good news about my brain!  :-))
And here is the picture I asked for before bidding Dr. Tonnesen a happy retirement…
 

Karen and I saw the oncologist last Thursday and learned that my left lung sounds the same as it has in the past. No change. No swelling in left leg so was to get another doppler ultrasound the next day.
We inquired as to possible “next steps.” I’ve had three different kinds of chemotherapy, and will finish ten days of whole brain radiation on Wednesday. My calendar is full till June 28… Danny Grad Reunion next week. Meeting with Dr. Heyer set for the following Tuesday, July 1.
Options for future:
–  Nothing for a while
–  Follow up with another MRI
–  Treat back with radiation for low back pain, if worse.
–  Another chemo. Maybe Tarciva (I didn’t qualify for it but there is some evidence that others still benefit from it), or a drug called Gemzar.
–  When traveling, be sure to take along my Vicodin, should I have pain.
So what have I been experiencing since I began radiation? The predicted fatigue has indeed occurred. I have gotten progressively weaker and slower. I’ve had a couple headaches and difficulty with quads when beginning to walk. I’ve needed to ‘give in’ and take to the lazyboy more than before. I have lost the appetite that I had before, probably because I’m off chemo which means I’m off Decadron which, as a steroid, pumps up appetite. But I’m forcing myself to eat and take daily walks, as advised.
Piles of odds and ends, mostly paper, have accumulated beyond my tolerance since I have forced myself to work on the Music section of the Compendium (S.W.). I see the end in sight and have been typing the blurbs on the computer in order to make it easier for compilation when the end is finally here. 🙂
Tomorrow I see Dr. Tonnesen, the radiation oncologist, who will discuss the level and frequency of my spinal pain and add his recommendation. My guess is that if the pain continues or gets worse I’ll be back on radiation in the beginning of July. Waking up with lower spinal pain is no fun, but it has usually gone away.  Only it’s not been going away this past week so I’ve been taking Tylenol. I have plenty of stronger narcotics to fall back on, a virtual apothecary! Six of them, but I’ll not name them lest I become the object of a dope inquisition here at Greenspring! I dutifully fill the various prescriptions but – fortunately – haven’t had the kind of pain requiring them. Yes, I am MOST grateful and hope it stays that way!
Dr. Heyer called last Friday to report that my blood clot had improved considerably but was not totally gone. Continue with full-dose aspirin which I’ve always taken, and he’ll see me in a few weeks.
My hair has not come out in bunches as predicted, but more has been accumulating in comb so that it is nearly all gone. This week and next are supposed to be the falling out period. I just hope that my wig will stay on – I may need some velcro!
I shed my wig for a safari type hat when walking outside, due to the heat buildup inside wig. Lucky to find it among old hats; REI and lightweight cotton/poly. I’m sharing this pic of my appearance “on Safari around Greenspring!”
G’night for now.

Not much to report about whole brain radiation except that, like chemotherapy, the administration of it is a breeze. In fact, that is the easy part of both. I am under the beam just 30 seconds on each side of head – above ear and eye  (+)  “X marks the spot!” The mask is not as tight and restricting as the one last summer (stereotactic radiation on the one small spot). This is for all ten spots that are scattered all through my noggin. As you can see, this mask is bolted down tight as was the other one. The machine rotates from side to side over my head for each treatment and with the short “hummm” or “buzz” I am suddenly aware of a blueish-purple color if my eyes are closed. Beautiful. On the other hand, if I open my eyes, I see the graph on the ceiling with a few trees for decoration plus a target for centering. (The nurse later tells me yes, that ‘some’ people see colors.) This time the environment is not still; lots of moving around, back and forth to controls in adjacent area, some FM station playing amidst the motion, and … then it’s over. In less than five minutes I’ve shed my wig, earrings, and glasses and am putting them back on again.
I saw the radiation oncologist yesterday and he assured me that no healthy brain cells would be damaged, that I have the same ones I was born with….. haha! That we all do! Of course I was treated with raw radium for hours at a time for my birthmarks, vascular nevi, when an infant. He said that was appropriate treatment back then since radium was so expensive. Everyone warned my parents not to do that as it would affect my brain…..it did! And I have been more and more aware of that these days as chemo brain takes firm hold from time to time, leaving me embarrassed with no words at all.
I have been walking with my friend Gladys every day, except today. Worked steadily on last parts of Spirit Windows on Saturday and some yesterday, but today was a bomb. Totally wiped out. Awakened with a bit of a headache and then had lower spinal pain that didn’t go away as on previous few days; took two Tylenol which worked. Fatigue kept me in bed too long today and also helped me realize that I made the right decision yesterday – to cancel a Tibetan Bowl Workshop this morning for the Life with Cancer group, because i didn’t have the stamina to pull it off. That tells you something. Then my radiation appointment this afternoon got delayed almost an hour due to an emergency. Fortunately there was the jigsaw puzzle in the waiting room that I’d been working on (along with other patients) and could occupy my time in a fun way – for about thirty minutes, and then I thought I’d been forgotten. I normally go in and out all within 12-15 minutes and they don’t even park my car, just let it sit. (This is at the hospital.)
Thursday I see Dr. Heyer the oncologist. Will review where we are and possibly what he might have in his bag of tricks for me next.
This evening I’ll hope to get a good night’s sleep and maybe get a better start in the morning.  Maxine has ‘my number.’

This is an invitation to take advantage of the online retreat that was offered in early April … and is now being offered again this coming weekend by Shalem.  (June 6, 7, and 8.)  It is a fun collection of ways to perceive interruptions and opportunities for savoring words (poetry, scripture, story), art samples, and special music.  You can do it on Friday or Saturday or Sunday, or a combination of days.  Whatever works. Here is the info:

Holy Interruptions — Online Retreat Day

Would you benefit from taking a day to rejuvenate, recharge, and refocus?

This is a very accessible, practical, low carbon footprint way to deepen one’s contemplative way of being in the world — Retreat participant

Join Adjunct faculty member Ann Kulp as she guides you through a retreat day from wherever you are.  Using material Ann has utilized on retreat days for years, repurposed and adapted for an online setting, you will enjoy guided meditations, reflection questions, poetry, art and music.
June 6-8, 2014 (one day retreat can be taken any of these three days)

For more information and to register, please click here. 
Still discerning?  Get a feel for the spacious intent of the course with our Retreat Day video here.

http://shalem.org and scroll down to Holy Interruptions is the above link doesn’t open.

 
Most of the photos were scrambled from the way I had them laid out, so you will need to “hunt and pick” to match words with pics.  And above is the missing floor design in Northampton.  As you could see it was under the pic of Lily and Naomi. The hummingbird appears to be in mesh, like my mask!   🙂

Legends say
that hummingbirds float free of time,
carrying our hopes for love, joy and celebration.

The hummingbird’s delicate grace reminds us
that life is rich, beauty is everywhere,
Every personal connection has meaning and
Laughter is life’s sweetest creation.

– from “The LIbrary Letter,” June 2014, thanks to Jayne Shontell

Perhaps a few words from my hummingbird will speak to each of us as we welcome life, beauty, laughter and connectedness with every living being. It sustains me and brings continuous gratitude.

VACATION WITH DAVID’S FAMILY in Ashfield, MA –  May 24-June 1
Karen took me to the airport and David drove down to Hartford to get me.
The Setting: Post and beam house, sugar house, barn, pond, and woods (above).

    
Time to see barn renovations – 2 horse stalls and goat stall (vacant now) and to give me the opportunity to brush Winnie.

Surprised to find a hummingbird on floor of lunch shop in Northampton!

The Ashfield Memorial Day program on Monday featured the town band, and the local high school band (Tamara’s son Torsten played and marched), and

the Brownies (Naomi in center) read two poems and
marched along  with the veterans.

Here are Lily (11) and Naomi (9) in fun poses.  Naomi enjoys posing with my wig and Tamara’s glasses.

Wonderful week although I could have used more sun and warmth.  David had a fire in the wood stove three nights!  I attended several of the kids’ baseball/softball games, attended a poetry reading by Marilyn Nelson (Conn. Poet Laureate) which was memorable, and the whole family went to the Town Hall Saturday night for the play “You Can’t Take it With You” – a sheer delight.  (Be sure to click on photos for larger size.)

The homecoming was indicative of chemo brain. I didn’t write down the change of gate (nor did the airline personnel) and the wheelchair attendant took me to the wrong gate. My inattentiveness caused me to miss the plane by about 5 minutes. So another 2+ hour wait for the next plane. I had chosen to get up at 6 in order to get that plane (not really my choice!) and then missed it! Normally I would have sought more information when it got that close to boarding time. Not “with it,” and so it goes. As Paul used to say, “You need a keeper!”  More and more so, it seems!!  Thankfully Karen and I were in touch and she was not inconvenienced by the delay.

THE INEVITABLE MEDICAL

Both David and Karen expressed concern about my having whole brain radiation (WBR) prior to my Danny Grad Reunion since the information gleaned by internet was pretty grim.  As a result Karen and I met with Dr. Tonnesen yesterday morning prior to my regular appointment and reviewed the issues pursuant to quality of life.  He told us that WBR will not affect my cognitive ability but will cause physical and mental fatigue.  It will make it harder to want to do things; i.e. accomplishments will require motivation. Since we don’t know how quickly these tumors will progress, he recommended not waiting three weeks to begin.  However, he was perfectly fine with whatever we decided.  I was of the opinion that getting on with it made sense since we are only buying time anyway.  I’ve already got chemo brain so I understand some of the difficulties I will experience.  I’m counting on my dear friends to be tolerant and patient with me in whatever condition I find myself… which I’m sure they will.

Yesterday I had another mask made…. remember that mesh mask from last summer’s stereoscopic radiation?  Well this one is only one piece, but still plastered on your face while hot and mashed into all the grooves.  I had a crossword puzzle image on my cheeks when done!  They have arranged it for me to begin treatment on Thursday, June 5, and the 10 days will be completed on the 18th, the day before Kate’s graduation at Constitution Hall. Then the D.G. reunion begins the following Tuesday, June 24-27.

In the meantime I’d like to go to the Summit house since it’s been so long since there, but I have some finishing touches to put on S.W. and need to get that done while mind isn’t falling asleep too much of the time.  I’ve begun a regimen of walking with my friend Gladys each morning (or as much as I can) in order to keep my energy level pumped a bit.  Don’t want to become too lethargic and I figure that should help.  I’ve been out of shape quite a bit since last pickleball. Difficult to do stairs, quads and knees hurt when walking, and  feet are a pain, literally.  Other than that, I’m doing well, just not as “up” as I was a few months ago.  My treatments are late afternoons around 4:30 or 5:00 most days and a few at 3:00 toward the end. Not fun during rush hour but the daytime will be free and that is nice. I can drive myself which is good to know. It’s only 30 seconds on each side of noggin, so no whammy.  🙂

I’ll keep you posted with brief reports….

Dr. Tonnesen (the radiation oncologist) gave a great analogy this morning. Cancer cells are like dandelion seeds in the wind.  Some seeds land on fertile soil and begin to grow immediately, some land in less accessible areas and take time and effort to grow and some land on asphalt to die.   If you have one dandelion growing in your yard, you can target it to eliminate it.  Once you have many dandelions, you are most likely to spray the whole yard to get rid of them.   That is what the whole brain radiation is supposed to do to the cancer cells.  (Personally, I generally choose to dig out my yard full of dandelions because I don’t feel comfortable spraying but the analogy doesn’t hold for this choice.  Can you imagine identifying and treating each individual cancer cell? That would be brutal.  For some reason, this helps me to see the wisdom in doing whole brain radiation.)
The plan is that Mom will get ten treatments (consecutive days except for weekends) where they radiate each side of her head for thirty seconds in the area above her eyes and ears.  So, a total of 60 seconds every day. This procedure excludes the hippocampus to avoid affecting memory.   She will be able to drive unless a side effect appears or she is too fatigued.  Some possible side effects are permanent hair loss, temporary reddening of the scalp, fatigue, and chemo-brain which can be temporary or permanent.  Understandably, Mom is most concerned about permanently “losing her marbles” as she puts it.  She will go in on June Second to prepare for the procedure and then they should start treatments sometime that week.
We spent the day together getting her prepared and organized and now she is busy packing for her visit to David’s tomorrow morning.  I am sure that she will enjoy the time with David & family and the beautiful, pastoral space up there.  I think that having some distance from all of the busyness and demands will be a welcome change.   Up there, it just seems easier to take deep cleansing breaths.
Peace and joy, Karen
 
 
 

To paraphrase, Dr. Heyer (the oncologist) tries to send the message that Mom is not the results of the tests that she took on Tuesday.  Mom looks good and sounds good.  She rebounded from the post-chemo side effects quickly this time around and has had a very busy, active week.  She turned in her Spirit Windows, second-and-spruced-up edition yesterday!  Her only health concern this morning worth noting were swollen ankles and feet in the last couple of days.  But, the reports that we met to discuss didn’t reflect all of this positive activity and wellness that Mom is living.  Nope.  Instead, the MRI shows that she has multiple tiny tumors in her brain that are splattered like paint throughout different areas of her brain.   The tumor that she had zapped last July is now twice the size at 10 mm.  The PET scan shows no conclusive growth or change in her lungs or bones and absolutely no sign of metastases in her liver or adrenal glands which is the good news.   She has finished up all the chemotherapy that can be offered to her and that doesn’t address the brain anyway.  The next step will be whole brain radiation.  We will meet with the radiation oncologist tomorrow morning to learn more and schedule the procedures but just the term gives me the heebie-jeebies.   You all know how fearless and brave Ann is.   She accepts the whole brain radiation as the reasonable next necessary step.
Our next stop is to get an ultrasound a couple of buildings away in order to rule out a blood clot in her legs.  The results are positive for a small blood clot in her left calf which explains the pain and swelling.   We returned to Dr. Heyer’s office to find out what his recommendation is for treatment.   He eliminates the choice to do nothing, the choice for a full dose of blood thinner because we don’t want the tumors in her brain to bleed, and the choice to insert a vascular filter into the vena cava because the tumor is small and BELOW the knee which means it is much less likely to travel to her lungs.  The final determination is that she will go on low dose blood thinner, Lovenox, which she has to self-administer as a daily injection.  Being the fearless and brave Ann, she sticks the needle into the side of her leg before we leave the office to reassure the nurse and herself that she can do it.
So, the news from today wasn’t the best but Mom continues to do well and be well.  It really is important to use the test results as a tool but they do not define or describe her.  She is so much more!
One of us will report back with any additional news from the radiation oncologist.  She will be busy preparing for her visit to David’s on Saturday.  We just keep moving forward…
Karen
 

I mistakenly put the wrong dates in for the repeat online retreat course “Holy Interruptions.”  It will be Friday, June 6 – Sunday June 8.  Another example of chemo brain … or perhaps age!

The past few weeks have produced cause for questions and naturally some accompanying anxiety. Easter Saturday followed my last blog and was an expected ‘low day’ since it was chemo week (4/15) but more surprising was my discovering that the next day I felt unwell enough to need to leave the Easter service half-way through. That was a first; I’ve never had to leave anything. I rested and went to Karen’s for brunch which was a treat and helped to raise my spirits. I rallied enough to once again make the trip to Blue Ridge Summit the next weekend. Two days later (4/29) I felt well enough to attempt pickleball after many weeks of absence! Thoroughly enjoyed it and was the recipient of much understanding. Wasn’t as winded as I expected either. A super discovery!! Then came Wednesday, the next day, when I awoke too dizzy to walk around the bed without wobbling. Had a few semi-falls in the bathroom as I veered from door to sink and back to bedroom. The whole day was spent in a state of vertigo, lightheadedness, and weakness….staggering around and …. worrying. The 4mm. lesion on my cerebellum is the part of the brain responsible for balance !  Was this a sign that I had moved from stability to activity? That was the day I was to go to Shalem and review the online retreat with colleagues; obviously I cancelled. That night I went to sleep hoping I wouldn’t waken with more of same! Fortunately I didn’t. And on Thursday it was a gorgeous day and the Shalem folk came to me. I had energy and could think a bit clearer! By Saturday (5/3) I  was ready for more pickleball so gave it another try – successfully and again with less breathlessness. 🙂 My major difficulties have been with increasing mental confusion (forgetfulness and thoughtlessness and word loss), visual difficulties that halt reading or computer work, and the annoying constant nose dripping. Wondering if all that was going on would preclude me (by my choice or the doctor’s) from having chemo on 5/6, I shared my personal information with the office; was told to come in early for consultation but to come prepared for chemo. So that meant taking all the prep meds and getting wired up at night.
Consultation results: Since my staggering day episode was in the middle of the chemo cycle (“nadir”) it is possible that I was dehydrated and that could have brought forth such an outcome. That is when there is a low blood count and I might be predisposed toward  lightheadedness. Also, if the cause were the lesion it would most likely be occurring more frequently. No side effects from the chemical taxotere show anything like I had. Vision maybe, and chemo brain definitely. I had my 17th infusion on Tuesday (5/6) and have appointments on the next “would be chemo day” (5/20) for a PET-CT scan in a.m. and an MRI of the brain in the p.m.  Then on 5/22 I will meet with Dr. Heyer to review the results and see where we go from there. Hopefully there will be nothing dire observed and stability will remain.
Immediately after that I have a bit of time off – don’t know what’s next because I’ve had the maximum number of treatments for 3 drugs. Dr. Heyer says he still has some things up his sleeve though. 🙂  Primarily we will “watch closely.”
Two days later (Saturday 5/24) I will be flying to MA to visit David’s family, returning Sunday, 6/1 and pick up with my Xgeva injection which has been postponed. I am more than eager to visit them since it’s been 6 months. It will be a bit cooler than I’d like but I’ll be avoiding the increasing heat and humidity here.  And David tantalized me by saying, if you come up sooner …”There’s this quintessentially small-town America 2-block parade,” and you could be here over Memorial Day. Ashfield is a charming town, praised by Barbara Kingsolver in her book Animal, Vegetable, Miracle.  
And so I moved my projected dates up a week or two.  That will be nice in that it will space the time between visits when Lily and Naomi will be coming to Virginia the end of July/beginning of August for two weeks. We’ll have some time at the Summit house and with Karen’s family (prior to Kate’s departure for UVA as a freshman!). The girls will be sharing time with Laura’s family too. I am very excited about  their opportunity then to attend a week’s free camp in Maine for children who have lost a parent. It is a program called “Circle of Tapawingo” and you can Google their video showing the kind of sharing and fellowship that comes with common backgrounds, being able to be honest and open up to feelings. They will also be able to return each year. Quite a camp! This is something that they will both profit from, I feel sure. It’s been almost six years since Laura died.
I apologize to all of you whose calls I’ve missed by being off on some jaunt/errand/appointment or maybe out-like-a-light in the lazy boy!  Or dazed from next-to-no-sleep the first three days of chemo when the anti-nausea drug causes me to be wired till three or four in the morning!  Also, I have truly been in over my head with things to do that normally seem ordinary, but my speed is slower than slow. I continue to be disturbed by the amount of time it takes for me to comprehend something or to remember it. I have missed activities that I wanted to attend or paid good money for – due to memory. Two things were fortunately a week ahead of what I’d jotted down! but one was a day late which grieved me: the Chef’s Dinner this past week…. I just wasn’t in sync with any of my gadgets or paper and forgot. I have now dug out my magnetic calendar and put it on the fridge door, compiling all that comes from the four sources that are never quite synched!  Now I can see my schedule in front of me! Yes, I forget to look; I’ve relied too much on a good memory.
On the positive side – for which I am MOST grateful, I have had more energy to tackle things around here (organizing and rearranging) as well as the Spirit Windows editing which I’ve promised to be completed by Memorial Day!  I find myself unable to function efficiently when things are turned upside down among my surroundings, so this has been a joy to experience. Shalem will be pleased as they are hoping to bring it out in the fall.
The online retreat day through Shalem was received quite well and the review convinced them to offer it again – heads up!  on Friday, June 4 through Sunday, June 6.  So if you missed it last month, here is another chance! You can take as much or little time with it as you like and organize it for any part of those three days.  (There are 4 parts.)  Access is through www.shalem.org  – go to Store for “Holy Interruptions.”
Hummingbirds!  I have waited and waited for them but my ‘nectar’ turned cloudy and was refused.  Put out fresh this week and on Monday afternoon 2 birds finally found it!  But – it has turned cloudy again and I’ve seen no more. 🙁   Why? sugar and water 1 to 4, same as always. BUT – my little sister from college days was here from CO and is an expert on – bee balm!  She sent me three plants which are thriving out on the patio and should bloom in bright red e’er long, I hope, and bring back those little hummers!  I have no green thumb but am trying not to forget the water – for them and for me!
As you might imagine the past year has found me drawn to many books that deal with spirituality, life, death, love, suffering, blessing, and so on.  First I will share with you a blessing from John O’Donohue, a favorite who died way too soon but who left a legacy of words for us all.
Blessed be the longing that brought you here
And quickens your soul with wonder.
May you have the courage to listen to the voice of desire
That disturbs you when you have settled for something safe.
May you have the wisdom to enter generously into your own unease
To discover the new direction your longing wants you to take.
May the forms of your belonging – in love, creativity, and friendship –
Be equal to the grandeur and the call of your soul.
May the one you long for long for  you.
May your dreams gradually reveal the destination of your desire.
May secret Providence guide your thought and nurture your feeling.
May your mind inhabit your life with the sureness with which
your body inhabits the world.
May your heart never be haunted by ghost-structures of old damage.
May you come to accept your longing as divine urgency.
May you know the urgency with which God longs for you.

– John O’Donohue

Following is an entry from today’s daily meditations by Richard Rohr that moved me greatly. It may not suit your personal beliefs but he has been an incredible inspiration to me and to many of my friends for his fresh way of explaining old phrases and words that can be found troubling or unclear.  His willingness to be vulnerable and honest and totally accepting of all is such a gift to me.
No Exceptions
I shall try to post another entry soon after any news from the scan and MRI. For now, please be with me in the mental confusion and fatigue of the coming 10-12 days when hopefully there will be no repeat of last month’s ‘episodic day.’   Love to all….