I was suddenly aware today…. that I hadn’t posted anything for over a week….that life is obviously moving along well….that there is really no news medically….that I am feeling as close to “normal” as I could hope for. Some shortness of breath when going up hills – toward the top. But I’m able to remain active, despite the heel difficulties. No thoughts of chemo or cancer either. (That will change next week, of course!) But for now: run up the flag!
I am enjoying the most idyllic spot you can imagine… at David’s in Ashfield, one of the picturesque hill towns in the Berkshires. As usual, I find myself totally immersed in the beauty of the farm and the whole area. This is the view from the Sugar House adirondack porch chair where I sit and read or knit or work on “Spirit Windows.”  Making progress too!
It is David’s and Tamara’s ‘post and beam’ home with a few additions as of a year ago.
Solar panels have been added to the sunroom roof. David’s vineyard is to the left and back of the house along with his apple trees. Blueberries and raspberry patches and cut flowers are in a lower field. Fresh veggies and herbs are near the house. There is a deck off the dining room and all four kids were shucking mountains of corn there a few days ago. (No, he doesn’t grow corn too!) Tamara has two boys (14, 12) and David two girls (10, 8).  Fresh corn and tomatoes are my favorite foods so I’m in heaven!
Once used to make maple sugar, the sugar house now has a large bedroom/sitting room and bath for a guest house. Wonderfully comfy!  Nothing like having private quarters!
To the right of the barn is a pond where the goose and ducks have access. There are also 2 gorgeous horses, 2 cute goats (kids, really), 3 guineas, hens and chicks… plus 3 dogs, birds, fish and hamster. A private zoo! The farm is on a hilly dirt road about 1/4 mile from where the girls get the school bus. I’ve walked out to pick them up several days. Earlier in the week I took them shopping for shoes, school supplies and hair trims. ‘Grandma time.’  We lunched at Panera one day and stopped for smoothies another.  One day I went with Tamara and the girls to the Ashfield Lake where one can relax with the view or swim. I watched the girls jump, dive and swim, and watched Tamara swim halfway across the lake and back! Views from this whole area feed the soul. Immersion in this atmosphere tends to divert one’s attention toward what is real… and to help me enjoy each moment.
Now to close by sharing some floral beauty from the nearby town of Shelburne Falls, just off the Mohawk Trail, ten minutes from here. They have a renowned bridge over the Deerfield River which used to be for trolleys but is now “The Bridge of Flowers” and a prime visitor site. It parallels the iron bridge (Bridge St.!). The girls and I took a walk over it the other day. Enjoy the pics.
  
                 
I hope that everyone has a restful Labor Day weekend.  Joy!

Four months ago a friend sent me this video and I was engrossed with ‘other things’ and just now pulled it up.  The e-mail was titled “WHAT GOES ON IN THE GARDEN WHEN YOU AREN’T LOOKING.”  The actual video is entitled “The Beauty of Pollination.”  You may have already seen it.  In case not, here is a treat.  The first 44 seconds show some stunning hummingbirds, then you are treated to bees, bats and monarch butterflies.  Nature is indeed a marvel.  This will slow you down and stir your heart.
Absolutely incredible photography!

Yes, I love them. I’ve put out nectar every year, same recipe. Same hopefulness. However, I have never had more than a couple takers, now and then. But…. guess what?!!  I put out my feeder two days ago – and – dozens have been swooping, swirling, competing, hovering and zooming around!  They have emptied the feeder in two days! A pair will try to light, then chase one another, in and out of the patio space, while a third helps himself. They are territorial and so fast! I can’t count how many have been darting about. Dozens! I am glued to the sight!
The last time I had such entertainment and hummingbird delight was when we visited David in Santa Cruz in 1996. Graduate condo overlooking Monterey Bay where the upstairs porch was next to fir trees with the birds darting in and out to the feeder, almost into one’s hand. (Maybe they did; it’s been a while!) Some of my friends have garden flowers to attract hummingbirds, a more natural way to observe them if possible. One, in Boulder, CO, has a mama bear living in a cave nearby and obviously doesn’t put out nectar!
These wee ones are so unbelievable in their speed, size and ability to take in so much liquid at once. They can fly at speeds exceeding 34 mph. They are also the only group of birds with the ability to fly backwards because they can rotate their wings in a circle. Their wings beat from 60-80 times a second and make the humming sound that gives them their name. Their long tongues allow them to lick their food at a rate of up to 13 licks per second. During migration, some make a non-stop 500 mile flight over the Gulf of Mexico. Oh, yes, and it has the largest brain of all birds (4.2% of its total body weight).
For those curious about the beliefs surrounding hummingbirds, there are talismans from the Aztecs depicting the bird, symbolizing vigor, energy, and skill at arms. The Aztec god is often depicted as a hummingbird. One of the Nazca Lines (geoglyphs) in Peru depicts one.

 (I have silver earrings of it from my pilgrimage there in ’08.) It is a symbol of life and joy, and of beauty and harmony.  Because of its swiftness it can respond quickly; because of its resiliency it is able to travel great distances tirelessly.

Here is the prize piece of information: They can detect flowers that have healing qualities, knowing how to search for various fragrances, colors and types in the wild. In Native American cultures they see the hummingbird as a symbolic doctor or healer because of this ability to use and find flowers to heal themselves.
Hummingbirds, keep coming!!!
P.S. I can report that I am doing fine after the first maintenance chemo, with minimal side effects. I am more disturbed that my feet (heels) are not healed!
Go hummingbirds!!
 
 

With joy I can tell you that the extra three weeks between chemo treatments has made a huge difference in my energy level and my breathing.  A total of six weeks was between the last of my initial treatment series (4 treatments; every 3 weeks) and the beginning of the “Maintenance doses” (every 3 weeks for I don’t know how long).  I will not know the results from the radiation or the chemo until after my second treatment, which will be around the second week in September.  Not knowing, though, can sometimes be a blessing when dealing with vicious vermin-like cancer cells!  I just assume that how I feel is the best indicator (as the docs all say) and that all continues to be well.  The only complaints have been swollen eyelids (which they think may be allergic reaction to something) and the return of plantar fasciitis (heel pain; had it decades ago) which limits my ability to play pickle ball – just when I have the energy!  Drat! I have several kinds of treatment I can do – if I take the time to do them!!
Time at Blue Ridge Summit with glorious mountain air and delightful peace and quiet nurtured my inner being.  I dug around the files in the workshop to locate my SPIRIT WINDOWS legal documents and watched two movies on TV, both oldies. Washed some curtains, swept porches and walkways and rejoiced that I could go up and down steps without heavy panting when reaching the top! (Also hoping those red blood cells have climbed the ladder.)
I am happy to share the news that SPIRIT WINDOWS is going to be republished!  I have had some most productive conversations and meetings with individuals and groups at Shalem and they are ‘in gear’ to make it happen. They are such a resourceful bunch of contemplatives! It is heartwarming to know that so many doors (windows?!) are opening to see this dream materialize. All is ‘on track’ for now as we move ahead. One question for you: Has anyone had experience in self-publishing a book that is in non-traditional format?  i.e. a spiral binding with horizontal layout. (Most places do only standard format and binding.) I re-printed it three times using Staples but perhaps there are some small self-publishing firms that might be competitive for such a project. The book will remain essentially the same except for corrections, and some additions/deletions as one might expect after 15 years!
As though the above didn’t bring smiles to my face, Shalem is also inviting me to participate with them in their online courses, using some of my dozens of presentations I’ve used in the past twenty years. I’ll have more details later, but this will preserve some valuable resources in a way that can be widely shared.  🙂
Your part? Please lend your support through positive thinking, imaging, prayer, whatever way suits…. that I might continue to feel progressively better … yielding lots of good red blood cells, good energy, less and less breathlessness, and … oh, yes, please throw in ‘healed heels’ for playing pickleball!  
 

Since Karen did such a great job reporting on my “stereotactic radiosurgery” last week, I have taken a vacation from the blog! The experience was more painful than claustrophobic, and maybe that was good! That night I slept for eleven hours! No side effects. Just hoping that the zapping got all the bad brain cells and no good ones!
I am “on holiday” from chemo right now, missing what would normally have been chemo today.  Instead – as Karen said – I will be ‘off’ until August 13, during which time I hope to be able to get some energy back and improve my red blood cell count and hemoglobin.  The chemo hit them hard.  Fortunately I will not be taking the harsher drug, carboplatin, just Alimta… with fewer side effects.  🙂
At present I am at the Summit house in PA where the weather has been divine. Sitting on the porch in the breeze, visiting with my cousin, having lunch with another cousin’s widow and then stopping at a neat farm/nursery in Waynesboro where I was overwhelmed by the huge supply of fruit, pastries, deli, veggies and packaged desserts – I just ate  my superb peach tart!  That is another ‘plus’ I’m enjoying: a really good appetite.  i’ll be up here for a total of two weeks with a stop back at Greenspring for a couple days in between.  It feels wonderful to be away and ‘on my own’ after the past three months of treatment.
Several weeks ago I had an ‘aha’ moment when several people inquired about my book, Spirit Windows, which was published in 1998.  Five thousand copies were printed and it was not reprinted due to budget, so copies are scarce and apparently in demand. I decided to accept the help that was offered and to embark on the process of seeing it put out in a second edition. This has been welcomed by Shalem, the actual inspiration for a good part of the book. It is timeless in that spiritual practices and source material are unchanged.

However, I am going to need some assistance with technical matters such as copyright law (I hold the copyright) and how to revise the copyright page.  And more.  I have already reprinted the book in black and white three times in ten years, but this would incorporate a few corrections. The book was originally put on a disk using “Quark” – if any of you are acquainted with that format or know someone who is, please let me know! I used the PDF format but the cover is not nearly as nice. I’d like to match the original version.
So that you know I am not just ambitious but also feeling more energy, I am also embarking on putting into print the 13 years of monthly contemplative prayer sessions that I led at my church as well as the 13 years of Advent services using readings, vocal and instrumental music, and silence.  I will need assistance in seeking permissions (from publishers) since most of the readings used in the Advent services, for example, would need to be printed, not just giving the source.  I’ve promised to do this for several years…..  and now it is, God willing, going to happen.  All three.  Happiness is….
My files from Spirit Windows are at the Summit and so these days are being used to sort and find important documents and guides along the way.  I will be preparing a list of needs on another blog (a bit later on) in case any of you feel led to volunteer your assistance in expediting these projects. In the meantime I am hoping to establish some basic guidelines and support mechanisms that will enable all this to happen.  I am most grateful to Dr. Pat Fosarelli, Assoc. Dean at the Ecumenical Institute in Baltimore, who approached me two years ago about Spirit Windows.  She was using it as a class text and very kindly told me that it was “the best of what’s out there” in the field and would help in any way possible to get it back into print. While I can’t say that my life has calmed down 🙂 perhaps I have become more focused because doing a second edition of S.W. suddenly became a “call.”  Not many weeks ago Lisa Richey, also a Shalem graduate, inquired and offered assistance for the same purpose. And – as if that weren’t enough – Rosalind Ekermeyer, the woman who helped me do the original proofing in the mid-nineties found me (she had moved to NYC), wanting to get back in touch again! That seemed to be further verification of my gift of energy for this project. And for those who believe that things happen in Threes… well, there you have it!
Please continue your incredible support. It is awesome!  Amen!
 
 

Mom would write today’s entry but she’s exhausted from the day. The visit to the oncologist was reassuring in that all is as expected.
We waited an hour to hear the news that the doctor is HOPEFUL that the cancer is progressing as “oligometastatic disease” which basically means it doesn’t seem to be spreading uncontrollably throughout her body but seems to be staying where it is. The bone cancer appears to be a very slow progression. He talked about how one of the key indicators of health with cancer is how the patient is feeling and functioning. “This is a gift” (quoted from Dr. Heyer) in that she isn’t in pain, she has personality traits of an optimistic fighter, and possesses a wonderful perspective of “there’s no advantage in not living life to fullest” (quoted directly from Ann Kulp).
The plan going forward is that Mom will go on a maintenance dose of Alimta to be delivered every three weeks for as long as it is effective and well-tolerated. She will be receiving periodic scans to assess effectiveness. She will start the Alimta on August 13, giving her a little break. This might be helpful for her because her red blood cell count took a real hit from the chemo and is taking a while to rebound. Her energy has been a bit low as a result.
After relaxing for two hours in a pleasant little courtyard, enjoying the breeze and relatively low humidity for a change, Mom took her valium and we headed to Fairfax Hospital for her targeted radiation. We waited another hour while they calibrated the large machine to target a tiny, little area of her brain. There are some things you don’t want rushed! As we waited for the Russian physicist to calibrate the machine made in China, the radiation oncologist reassured Mom that she wouldn’t emerge from the treatment speaking Spanish but that Russian or Chinese were possibilities. Ha! I am going to digress for a moment to mention that the radiation oncologist is the kindest, most compassionate doctor ever. He told my Mom that if she experienced any disturbing side effects tonight that his name was in the phone book and that she could call him at home. After the procedure, he wrote his phone number on the discharge paper after escorting her back to the waiting room. (He’s married.)
She reported back to me later that the music helped immensely since the mask was pressing onto the bridge of her nose in a painful way. She had eleven cycles of beams over about forty minutes. For each beam they had to move the bed or the rotating piece above her and clamp the box around her head to ensure that the spot was targeted precisely. Very jarring experience. But now, fortunately, it’s over. Yay!
Karen

Ever since I was told last week that I could have a CD of my choice played during the radiation I have reflected on what that might be. I who have a massive collection of music, mostly classical or choral, was confronted with a decision of heart, suitability, and length. Timing estimates for the procedure seemed to range from 30-60 minutes. My first thought was Rachmaninoff’s VESPERS which I had heard at the Washington cathedral this winter from the rear balcony; it was sublime.  It’s been a favorite for years, but not appropriate for Tuesday.

Almost immediately my mind then turned to Ralph Vaughan Williams’ THE LARK ASCENDING.  It is fifteen minutes in length and is an exquisite rendering of the skylark in flight, soaring, flitting and singing. A solo violin is the lark, taking one on a magnificent journey skyward. It becomes a tone poem, one in which you can allow yourself to accompany the lark and see and feel all that the music might suggest. The composition was inspired by the 122 line poem of the same name written by George Meredith. The excerpt below is included at the beginning of the score:

He rises and begins to round
He drops the silver chain of sound,
Of many links without a break,
In chirrup, whistle, slur and shake.

For singing till his heaven fills,
‘Tis love of earth that he instills,
And every winging up and and up,
Our valley is his golden cup
And he the wine which overflows
To lift us with him as he goes.
Till lost on his aerial rings
In light, and then the fancy sings
(You can listen to the music on YouTube and read the whole poem through googling the author’s name and title.)
I have some additional pieces that will follow and complete an hour’s worth, if needed.  Selections such as Massenet’s “Meditation from Thais,” Schumann’s “Traumerei,” Elgar’s “Enigma-Nimrod,” and Mascagni’s “Intermezzo, Cavalleria Rusticana.”  A mix of cello (Yo-Yo Ma), sax, orchestra and violin. So pull up the above piece or pull out some of your favorites and follow along with me as you visualize inspiring places and dreams.
P.S. I also plan to take a valium prior to all this. I want to be sure that my mind and body are both cooperating.   🙂

Today I had a CT brain scan with the mask.  I had been advised that the mask would shrink overnight and be tight….. though not quite as much as I experienced! As they tried to clamp the top to the bottom my upper teeth/jaw began to feel as though someone had retrieved my braces from adolescence! I called out to stop! They managed to remove it, heat it in one place, cool it and try again. Definitely not comfortable but was told it was a “great fit!” Not exactly consolation when your eyelids are pressed shut and you are drooling from the ‘bitewing’ that your teeth are pressed against!
Then came ‘the box.’ This is the gizmo that goes over the mask and is taped down, (see photo) and upon which all the radiation physicists will have applied their codes and precise markings on Tuesday. It is used to make sure that those 4 mm. of cancer will get perfectly zapped. (It will  be removed for the zapping.) At this point I am advised that I will need to be perfectly still Tuesday for about an hour!  WHOA!  I had been told 30 minutes! With all the adjustments and placements of the mask and the box, I need to allow more time. I am beginning to think sweat…. then valium…then advised to definitely take one when leaving home and another, if needed, when I arrive. I asked if I might see the machine and was lucky to get a view and photo.
It is exactly as was the video clip from yesterday, so here is the process for you to view… exactly as it will occur. All that beautiful scenery on the walls will not be visible to me, and hopefully not to my radiation team!
This is a whole new challenge. Being held down so rigidly is more taxing than I had imagined yesterday. If my mind is engaged at all it must be to focus on those 4 little millimeters being perfectly zapped. But between now and then I do not plan on thinking about it at all…. just working on another project which you will hear about soon.  😉
I know you will be with me next Tuesday at 5:30 pm.  Unlimited gratitude to each of you!

As many of you know, that is the title of workshops I have done with my Tibetan singing bowls. We appreciate both the sound and the silence, also noticing the space between the sounds. All is vibration, present at creation. That is what came to mind today while in the MRI for a good 45 minutes. Instead of the booms and ta-toms bothering me they seemed to form into nonsense syllables that became similar to a chant. Then a long series that had a short format and I found myself counting them, like I do breaths! Over 100, I do know that! Then the beauty and peacefulness of a little silence.  And back into a new rhythm. I was not analyzing anything or attempting to distract myself; I just seemed to go with each next cycle, whatever it presented. What an enormous variety of combinations of sounds and rhythms! No, I didn’t hear any bowls, nor did I even think about them. I suppose I was in the moment, occasionally hearing the voice from silence that told me how many more minutes in the next cycle. Then it was over.
Here is what happened outside the tube. I was not taken for over an hour due to the breakdown of one of the scanners. By then my valium was of little value and a second one would not have time to take effect. The room this time was exceedingly cold and the air across my face could not be turned off. The blankets were not warm as last time either. The contrast ran cold through my vein during the last part. There was no mirror as last time either and yet I felt held and somehow ‘open’ to the two lights on either side of my hips, thinking that they might be windows into the room. Spirit Windows? I do not try to minimize the discomfort of being cold with blowing air, but it was all just something to be endured and to ‘be with’ as there were no realistic alternatives!
From there move to my next appointment. Due to the excessive delay Karen and I had to move quickly to the hospital for the mask-making as we were already late. That meant no valium would be helpful since the procedure only takes 30 minutes! They moved quickly and were incredibly kind and understanding. First the molding of the back of my head with plastic and mesh against what’s left of my thin hair. The procedure was very much “in your face” (haha!) with a multi-strip face outline, a nose piece, a mouthpiece, and the overall “mesh-mash” (my term!) covering my eyes as well, that was actually more than warm … hot. It cools down and then I get to lie there for 15 minutes while it hardens. All of a sudden – with a minute or two left, I let out a big sneeze! Fortunately the mask was dry. They took some pictures and showed me the two pieces – which I get to keep when all this is over!!  I can’t say that I was “comfortable” with all that paraphernalia holding me in and down, but I experienced no panic or anxiety.  It will be a challenge next Tuesday when the radiation session will have another box around my head as well (!) and take 40 minutes! But I am definitely heartened by my experience today and thank all of you who sent and felt support.
My Summit house neighbor sent another video clip that more closely approximates what I had done today. However, the machine that is pictured is not the kind that will be used for my radiation next week.  Tomorrow, Wednesday,  I must wear the mask for a CT brain scan (short time but it will have shrunk a bit and be tighter!) so they can get the radiation physicists to plot and plan the angles and scopes with the MRI taken today. Such technology!
“All shall be well” says Julian….
it turns out that I didn’t need the valium after all.
“And all was indeed well!”

I forgot to attach this link as I’m sure no one would want to miss it !!  Medieval torture chamber complete with clamps/bolts!  No place for claustrophobia here!

http://www.youtube.com/watch?v=TRj2OnDL0uc&feature=fvwp

My last chemo of the series was on Tuesday and I took advantage of my 72 hours of no side effects to visit with my cousin and his wife as well as a dear friend from many years. Then came Friday and a few days of feeling weak, weary and woozy. I chose to spend it in bed this time, an excellent decision!  Karen came today, encouraging me to go to Sunday brunch.  We did.  Beginning to feel better though still very tired.

Now the challenge of cages, helmets and masks.  Please keep me on your calendar this week and next. I’ve been prescribed some valium to help me through it all!
Monday, July 15: Consult with neurosurgeon on radiation team 2:00
Tuesday: MRI of brain 11:30; make a mask of my face 1:30
Wednesday: CT scan of brain with mask (bolted down) 10:30
Monday, July 22: Annual ophthalmologist appt.  Eyes still watering.
Tuesday: Appt. with oncologist (where we go from here) 1:15
Targeted radiation appt. 5:30, always end of day. 30 minutes with mask bolted down!
Thursday: Appointment with pulmonologist

*********

POCKETFUL OF MIRACLES: Prayers, Meditations, and Affirmations to Nurture Your Spirit Every Day of the Year  by Joan Borysenko, PhD. has been a prime resource for me since it was published in 1994.  Each day offers a “Seed Thought” as well as a “Prayer/Practice.”  All very brief. Today I send you one from last month’s readings to reflect on.
SEED THOUGHT
Each of us is truly a bridge between heaven and earth.  Just as the physical light of the sun is transformed by plants into all the organic matter on the earth, we are the transformers of the Divine Light that accomplish God’s creation on the earth plane.  Summer is a time for drawing down the Light.
PRAYER/PRACTICE
One of the ways that we draw down the Light is by opening our hearts compassionately to others.  Continue your prayers for whatever specific objective you have chosen.  As you meet and think of people today, remember that every thought is a prayer.  Mentally wish people well.  Imagine them as happy.

This afternoon Karen and I met with the radiation oncologist who very carefully explained the procedure that has been suggested.  It would zap the 4mm nodule in a very limited and precise manner.
Choices:
1-  Wait a couple months to see if it has changed via MRI.  (I had elected to have a CT scan in April – declining the MRI! – so no way to compare now.)
2-  It is possible that in a couple of months there would be more such nodules.  Like a dandelion field many more little flowers could crop up!  If many, it would be impractical but if only a few, then wise.  However, no way to know!
3-  Go ahead and do the procedure on this very small mass now and hope that no more arise.  (I asked what he would advise his wife if in my situation (!) and he said the last one… take chance of no more.)
The four stages of the procedure:
1)  Another MRI to focus more clearly on that 4mm monster.  Yes, another brain MRI.
2)  An appointment to make a mold of my head, which must be kept totally still.
For your information and imagination (and lots of courage) here is what it is like:  At least as close a pic as I can find on the web. It is a mesh that is molded on my face – very tight.  I can’t wait for the experience  🙁

3)  An appointment to get a CT scan with the mask on.
4)  The actual “targeted radiation” (sometimes called stereotactic radiation, cyberknife, gamma knife, etc.) where I must lie with the mask on for 30 min. of treatment. They line up the CT scan and the MRI image so that the 4mm area is perfectly zonked. There is only one treatment. No side effects.
Regardless of what I choose I must return for an MRI of the brain every two months to check on the presence and size of any possible cancers.  Oh, joy.  Have you counted the number of cages/masks I’ll get to experience?!   But I have chosen to go ahead with the procedure and do what is possible for now. I am also aware of a new spiritual discipline that has dropped in my lap (or on my head!) – learning to tolerate things that are ‘in my face.’  My original fear came from having an ether mask put on me for three surgeries as a child and then the fourth time, at age eleven, having a nurse force it on my face without telling me, leaving me screaming for my mother and with nightmares.  So please be with me as I attempt to deal with all these masks and cages, even perhaps without some minor sedation.  | was able to partially overcome it last week so am hopeful that I can focus my attention on the spaciousness of the unseen that resides in my memory and positive impressions.
All the above will take place in about two weeks (after my 4th chemo next week, its 3 day reprieve, its 4 day whammy, and the recovery).  It will all be done in about a week and a half.  Chemo at that point will probably be down to a maintenance dose of the Alimta which has minimal side effects.  I’m hoping to feel well enough to visit David’s family in Ashfield, MA in August.  Something relaxing to look forward to!
P.S. Yes, I DID go to the Annual Organ Concert at the Cathedral!  Two pickleball friends offered to take me and another friend came too!  It was a real celebration of the 4th with organ (even duets), piano, symphonic orchestra, and the Navy Sea Chanters. Scott Joplin, George Gershwin, Aaron Copland, John Philip Sousa, Rachmaninoff, etc. all meshed into a super program….and the cathedral was packed! We arrived in time to wander through the Bishop’s Garden and still get prime seats! I’ve wanted to go for years – and this year was IT!! Hope you all had a happy 4th too.

At least that is the phrase I use when describing the results of today’s review of scans and MRIs with the oncologist.  First of all, he was seemingly dumbfounded to find me in such good shape! … with energy and with no pain.  I am most aware of the part that each of you have played to keep me supported, prayed for, and loved.  Regardless of any results, how I feel is among the top bits of information that the oncologist counts on!  Please keep it up!
The good news:
–     Lung mass is a bit smaller.  From 2.9 x 2.9 cm. to 1.3 x .9 cm.  It is inseparable from the pleura.
–     No fluid seen since the pleurodesis  surgery.
–     No new findings in either lobe of the liver, or lungs, or upper abdomen, or lymph nodes.
–     Don’t see any pressure on spinal cord or nerve roots, or any fractures.
The not-so-good news:
–     There is increased density (cancer?) in the thoracic spine which they didn’t see before. (Bone reacts to its environment in two ways — either by removing some of itself or by creating more of itself.) This could also be from Xgeva injections for bone protection as well as from chemo which both cause improvement.  But MRI report says, “Interval development of extensive metastatic disease throughout the thoracic spine…. The largest sclerotic metastases are noted within the T11 and T12 vertebral bodies.”
–     Total spine report: “Multifocal enhancing lesions of the visualized lower thoracic spine, lumbar spine and pelvis…. consistent with osseous metastatic disease.  The largest lesion in the lumbar spine is a 1.8 cm lesion involving the L4 vertebral body.”  (I basically have involvement all the way down from T11 to S1 !!!)
–     Brain report:  “There is a 4 mm rounded nodular focus of enhancement involving the inferior right cerebellum with mild surrounding vasogenic edema, suspicious for a focus of metastatic disease.  No mass effect seen.”   In other words, 4mm something with some swelling around it!
Treatment from here
–     I will keep my appointment for Chemo #4 next week. It will be the last as they don’t do more than that. Then I will probably be kept on a “maintenance dose” of the Alimta – which has minor side effects by comparison.
–     I will get an appointment with the radiology oncologist, actually the same doctor who saw Paul years ago and is ‘top-drawer’ (Glenn Tonneson), for an opinion.  It is hoped that a good possibility would be radiation via the stereotactic procedure, high intensity, targeting the small spot once or twice to try to catch any cancer before it causes any neurological symptoms.  (Balance is that area of the brain.) With my history surgery would not be a reasonable consideration.  If the radiation is an option then I would get fitted for a mask and prepare for immobility once again!!  It will definitely be several weeks away.  Oh, yes, another possibility for that 4mm spot is stroke. I do have stroke history on both sides of my family.  I’m a real medical wonder…
–      My blood work came back successfully again but they are checking my iron to see if by any chance it is playing a part in my shortness of breath. The chemo causes a dip in red blood count as it causes anemia, but iron is a different issue. The onc doesn’t think so but is checking it out. If no positive results then it is most likely due to the cancer and my getting used to it.  I manage very well, considering, just can’t move about with the same determination as before!  Pickleball is still in the picture, though, and I rarely go into the office without one of the staff asking if I’m the pickleball person!!  I took Lily and Naomi last week if you recall.
I’m feeling good and celebrating that fact. Got an extra week of feeling great this chemo cycle!
I had a lovely visit with David, Tamara, Lily and Naomi these past couple days.  Family news here… must balance all that medical jargon!

Lily wants to take violin like Daniel did, and David has relented.  She has learned to pick out a few pieces on Tamara’s violin and Daniel was wonderfully patient helping her.  He treated us to some of his former 8 year repertoire but sadly, for me, sacrificed his violin for an electric guitar last year!
A special event was going out for dinner last night … a first for me in months!  We went to a local restaurant with excellent crab cakes…. although I began to wonder if I should have ordered the lobster tail that another table was enjoying!  Guess what?  Tonight one of our dining rooms had Lobster Rolls on the menu!  YUM!   Memories of Maine at Debbie’s in 2004!

Missing in the picture are Tamara’s two boys:  Torsen (14), Mac (12).)
Lily is 10, Naomi 8.  Karen’s Kate is 17, a
senior, and Daniel is 14, a freshman.
Ben & Karen Grumbles, David and Tamara.
I’m looking forward to the 4th and would like to go to the Cathedral for their Annual Independence Day Organ Recital at 11 a.m.  Anyone interested in joining me?
Here’s the spectacular program.         Happy 4th and love to all!

My week has morphed from misery to tolerable to a few leg cramps to fairly normal to energetic!
Yesterday I had a lovely visit with Debbie during which time we ‘covered the waterfront’ of possible topics and enjoyed each other’s company immensely. She really liked Greenspring community, its facilities and greenery.
This morning I picked up Lily and Naomi from their other grandparents so we could spend some time together. It was our lucky day at pickle ball!  Only five people had shown up so Lily got to play and even Naomi got to try it out.  🙂  I hit a few balls and actually played one game and, with Hank’s help, we won! Felt so good to be hitting that wiffleball/pickleball again!  Happiness is….
This afternoon a wonderful friend from the late 80s came by with her signature peace cranes! Anne gifted me with a bouquet of them a number of years ago and today added a refreshment bunch. Not only that, she brought a lovely large bowl of peace cranes for any friends who happened to visit me!  Now there is incentive!! All different patterns and colors. For those of you who don’t know the story of the peace cranes… go to the library and take out the children’s book “Sadako and the Thousand Paper Cranes” by Eleanor Coerr.  Here is the synopsis.  This brief video helps to bring awareness to Sadako’s story.  If you would like to make an origami crane, here are the directions. The story is one that I have used many times in different settings and its message remains one poignant tale of the consequences of war and our universal longing for peace.
My day was marred by my attempt to seek more information on my cancer.  I had not been given an order for a CT scan for my spine, only my lung. In the past several days I found that my right leg was ‘giving way’ just below the knee on the outside. A cramp? A Charley-Horse? Why not have a scan of the affected bone metastasis at the same time? It backfired. 🙁  The oncologist wants me to have an MRI of the lumbar spine AND the brain on Monday prior to seeing him on Tuesday!! Not only do I detest, despise, and resist MRIs but I’ve already in my past gone through too many!  including three of the brain for ocular migraines! My experience is that they put your head in a ‘casket’ (that’s my description) and strap it in except for a narrow rim of vision… and then shove your whole body all the way into the tube. Yes, you’ve got it; I’m claustrophobic. AAGGHH!! Not only that but I had to cancel my cousin Tom’s visit for lunch and I haven’t seen him in many moons!  Not to worry. I manage to get through these, thanks to valium and a driver. Just felt as though I shot myself in the foot! Of course the nurse assured me that I did the wise thing because any weakening in the lower limbs could show the presence of further metastasis to the brain, thus an alteration in the course of treatment. “One must always explore new symptoms.” My super active day turned into one with increased anxiety. I had been cleared of brain mets in early April; now I’m to get checked more thoroughly. And I have five waiting days till I will get the results from my lung, brain and spine! I think I’ll open the Rum Punch that David brought me from Barbados!!!
I’m adding a new creature to my hummingbird tonight.  He portends wisdom and helpfulness and in parts of the world is a good luck omen.  This little owlet guy sent by Shalem Circle friend Leslie is just too cute not to share with you at this time.  She said his mom had just been feeding him.  Life is all around us. Let’s celebrate it!

 

Just a quick note to those of you who get an e-mail notification of a new posting, to advise you to click on the title.  I have just realized that I’ve made changes and updates, and rearranged pictures to fit better, etc. and the e-mail version just sends out the original….. frequently flawed.  (Yes, I want it to be perfect, “right,” attractive – David!!)
Apologies from a novice blogger  🙂

This afternoon the darkness of four rather uncomfortable, nauseous, weak and woozy days began to subside. David had arrived last Thursday when I was in tip-top shape, hardly believing that he would be needed.  We ate at the buffet with a dear church member from Japan who has been gifting me with homemade madeleines and ginger and origami. 🙂
Next morning, Friday, I had a bath and discovered that I had barely enough energy to get out of the tub! Whoa! Bang, slam, whammy. I keep forgetting that I get zapped so suddenly. Feel like I’m hit by a Mack truck. Hard to get around without collapsing.
Saturday I felt a bit better so we went to Blue Ridge Summit where I had arranged for us to visit with a family member whom I hadn’t seen since David was a toddler! A delightful visit with Mary Ann, though I was definitely not the hostess, completely forgetting that I had invited her for “tea and biscuits” and SHE came with coffee cake and tea which never got opened!! Yes. 
It was another gorgeous day on the mountain and my lilies and roses were climbing and blooming even more, thanks to my caring next door neighbor.

Here is the corner garden where the lilies and soon the Black-eyed Susans will bloom.
We returned Sunday after visiting a bit with my cousin Rocky, and missing the rain that apparently soaked this area. I picked at food that evening, knowing that I must eat in order not to lose weight and in order to gain back some strength after the big wallop!
David left early Monday morning, wondering if he might be leaving a day too soon. I decided that my being so incapacitated meant perhaps an opportunity to get my car in the shop for long overdue work.  Miraculously they came for the car, took care of all the work, and returned it today! Even ran it through the carwash.  Of course for what I paid, I’m sure they were delighted to oblige!  Feeling pretty lousy, I spent most of the day in the lazyboy; not even a hint that I would go to the dining room for dinner.  Another church member came to the rescue with some homemade soup that was about all that I was able to tolerate with a few crackers … and a bit of Ensure. Then last night … you recall my night owl habits … I began to pick up some energy and well-being. (Calories help too!)  I could walk without reaching for a chair!
Today Karen came by to assist with some housekeeping that I couldn’t accomplish alone. She brought me a little “gift” which was quite a surprise: a totem of a hummingbird!  It is precious and three-dimensional. Esther, one of my Danforth Graduate friends from Michigan, also forwarded some pics of an albino hummingbird… a rarity.
I contacted my friend Gladys, whom I knew from my work at her church in the 80s, and she accompanied me to dinner.  The fare was appealing and I actually had a decent sized meal … all four courses! I think I’m back on track for recovery from chemo #3!
Tomorrow Debbie, another of my Danforth friends, will be coming by to visit! She lives in Roanoke and is on the way to her Maine home with family. She too is part of the group that was together right after college…58 years ago!  She and Jane (came from Chicago to cathedral) and Allison (who went on the Shalem Iona Pilgrimage with her husband) joined me on a pilgrimage to Machu Picchu in 2008. Our whole group totals ten and we hope to gather in Maine for our next “reunion.” Such fantastic friendships and spiritual bonds.
Next on the agenda will be my CT Scan Friday to see if the chemo has been beneficial.  I won’t have any information until July 2 when I meet with the oncologist to review the scan. I know that you are all totally ‘with me’ in this next step, trying to be prepared for ‘whatever’ and yet believing that healing progress is our positive focus and prayer.

Indeed a full day!  Karen and I met with the surgeon who did the pleuradesis last month that relieved me of the fluid that had accumulated.  Because of hospital error in not giving me his x-ray order, I went for a chest x-ray… next door to my chemo treatment fortunately.  Then my treatment that includes a saline flush, two vials of blood (to check my numbers) before proceeding with the chemo, a combo of Dexadron and Aloxi to prevent nausea for 72 hours, and then the big guns Alimta and Carboplatin – which gave me ruddy cheeks as usual this evening! (This info is for those of you requesting details.)
The results. My vitals are all good, oxygen even at 98%.  Blood work was fine also as it has been each time.  In the morning, in answer to my question, the surgeon said there were two possible reasons for shortness of breath: 1) fluid has come back from the cancer and may need to be drained, 2) the cancer is blocking air passages. He feels that I am doing extremely well, look well, and appear to tolerate the chemo extremely well to be at #3 with no problems. He could not explain the excruciating lung pain I had except to say that I did not do anything to cause it or to do damage; if anything, it would cause the talc to adhere tighter.
My dear friend Susan took me to the chemo and we spent most of the time knitting … or I should say rewinding her ball of yarn that the dog had romped through (!) and then helping with some knitting renewal time while I worked on my afghan squares of a good 35 years! Karen had packed me a lunch so I was in pure comfort with all the above chemicals dripping into my mediport… totally unaware of any of it. For those of you who haven’t been exposed to chemo (as I hadn’t) here is the photo Susan took of my leisurely three hours in a recliner, never even needing to recline today!  Lunch and knitting and chit-chat.  Please don’t cease your prayers because I look so good!!
Just before I left for dinner I spoke with the surgeon who had just read today’s x-ray. These are his words:  “I couldn’t be more pleased!” “Beautiful!”  “No fluid – zero!”  “It is definitely better than when you were discharged in the hospital.”       Very encouraging words, wouldn’t you say??  He then added that the shortness of breath might also come from scar tissue or from the talc contacting nerves in that area… which should gradually go away.  And he adds that the only ‘fix’ is really through the chemo. He closed by saying “You are blessed.”  I thanked him and agreed ……
So this evening after having eaten a good Tuesday spaghetti dinner and Italian wedding cake, I am grateful – for my appetite, for some extra peace of mind, and a wee bit less discomfort – which I intend to focus on through my reading, prayers, and reminders of all the surrounding love.

Apologies for neglecting the blog for so long.  It was not due to poor health – although the usual ups and downs – but due to a backlog of legal and financial duties that needed attention.  I’m not sure if it’s the chemo, the cancer or an aging memory that has also caused me to ‘forget’ a few promises as well.
Since I last made a medical entry I had a swallowing difficulty that ‘came and went’ with both liquid and solids but caused me concern around the windpipe/esophagus.  Fortunately, it has gradually become less frequent and the doc is not worried. Last Wednesday I had a pulmonology appointment with the usual spirometry test. A shock to put it mildly. As I was blowing into the device I got the most excruciating pain in my back (lung), and on the third try it happened again. Very painful.  Never had this happen before in all the years I’ve done it. The doctor was not concerned, merely said we don’t need to do it again, but reported that my numbers were better than two weeks ago (up from 44 – 55) and he is not worried. Give it time. I wish I had pursued the issue because since that time I have found myself more and more short of breath when I walk and talk, and also trying to go to sleep.  I huff and puff (!! yes, like the old bad wolf!), panting and wanting longer breaths. I see the surgeon on Tuesday morning and can see if anything pulled loose or if he finds any connection to the surgery.  He had mentioned having a 25% improvement after surgery and 5-10% each day thereafter. That hasn’t happened. If anything, I am gasping more than before.  🙁  I don’t like it.  Following that appointment Tuesday I go for my 3rd chemo infusion. I am doing really well in tolerating the chemo and eating. I sleep lots and wish for more energy but do get some evening spurts (never in the morning!) and have done better this past week which is to be expected. People say that I’m looking and doing well, and that is nice, but I’d trade that for good deep breaths any day!
Yesterday Karen took me to Blue Ridge Summit, PA to the house there since we had an appointment to update the deed and to bring back some needed items.  It was simply glorious weather and we enjoyed it all immensely.  Today was a match…. heavenly.  Both days the man who keeps up the property for me was there trimming the hedge and weeding, etc. A huge amount of work. My next door neighbor had also contributed to some weeding and trimming, showing me my climbing roses my English friends planted for me last summer – and – for the first time ever! – my peonies IN BLOOM!  I always seem to get up there when they are past full bloom.  So here are some samples of the beauty I saw:

 
 
In addition there is a kousa dogwood tree that needs some pruning! and this most exquisite Asian lily that was moved from being in the midst of five sedum to its own space. Karen agrees that the photo doesn’t do it justice; it is that glorious!  You see them in floral arrangements but so many blooms in the garden!!  With many more yet to come.  Since I have the black thumb of death with plants I feel sure that Paul is still out there working his magic!


The setting for the lilies is shown here in early spring.
Hedge is in front of house, garden on left corner.
Here is the front view of “The Summit House” (as the kids call it), built in 1909.  Behind it is the garage and workshop. My aunt and uncle owned it between 1933 and 1997 when we bought it.  Treasured memories for me since my grandparents and three aunts and uncles lived within one square block!  It is a quaint little area on the mountain with a history of huge hotels and notables who came for the summer to escape the heat and humidity of Baltimore and Washington. The old Western Maryland Railroad built “Pen-Mar Park” where there were amusements, a pavilion overlooking the Cumberland Valley, a miniature railroad, a carousel, and formal dining and dancing …. until air-conditioning suddenly brought the demise of the hotels and tourist industry.  Pen-Mar Park has been restored and features a Big Band every Sunday afternoon in the summertime. My cousin Rocky brings his band every summer which is a joy since they are super!  And on June 29 there will again be “July 4th Fireworks” nearby at Ft. Ritchie (now closed as a base). It is spectacular with lake and mountain backdrop.
Now you can see that I am more interested in Blue Ridge Summit than I am in my health!  All that is good, of course, and helps to detract me from obvious discouragement. Hope you’ve enjoyed the little Kulp travelogue!
I would be neglectful not to mention the wonderful caring people who have called, sent cards and notes, and inquired faithfully. My church group of folk who live here at Greenspring meet for dinner periodically and were most welcoming and supportive at our dinner last week. I was included at another dinner which completely slipped my mind, held by a dear friend from Pickleball.  I’d like to blame it on chemo brain, but simply hadn’t coordinated my calendar.  My cousin Tom and his wife from southern Maryland visited this afternoon … and we had occasion to get caught up a bit. Other visits are planned. I am continuing to try to have enough energy to work on the many piles of paper, computer updates and mail, and thank-yous. Very far behind. Please forgive me if you are one of those!  My prayers continue for several dear friends who have gone through deep crises of grief as well as joy … and I send my gratitude to each of you for your continued support as my body is assaulted in assorted ways. Wish me well for chemo #3!  My special thanks to Karen who has been by my side countless days and inquiring regularly. And… I eagerly anticipate David’s visit with me for several days beginning next Thursday! (The ‘whammy’ days from chemo). Love and joy to all….
 
 
 
 
 
 

If you happen to find hummingbirds fascinating … don’t miss this program that will be showing on PBS this week and next.
WETA: Nature: Hummingbirds: Magic in the Air –
Sunday, June 9, 4:30 pm
Monday, June 10, 10 pm
Tuesday, June 11, 2:30 pm
Monday, June 17, 1:30 pm
Tuesday, June 18, 1:00 pm
Thursday, June 20, 5:00 pm
MPT: Nature: Hummingbirds: Magic in the Air –
Wednesday, June 12, 8pm
Thursday, June 13 at 12:01am, 4am
MPT2: Thursday, June 13, 8pm
If you want to watch it online…. here is the link:
Introduction:
http://www.pbs.org/wnet/nature/episodes/hummingbirds-magic-in-the-air/introduction/5424/
Full version (53 min.)
http://www.pbs.org/wnet/nature/episodes/hummingbirds-magic-in-the-air/video-full-episode/5475/
Hummingbirds represent one of nature’s most interesting paradoxes — they are the tiniest of birds, yet they qualify as some of the toughest and most energetic creatures on the planet. New scientific research and beautiful high-definition, high-speed footage shed light on their remarkable abilities. Sponsors: Citizens of Baltimore County; Constellation Energy; members of the Society for Excellence in Television.  Stunning.