Saturday, October 31, 2009

Pain Management 101

Dear Family and Friends,

I've been struggling for some days with the great desire to see Francis pain free, yet nagged by warnings to be very very careful with narcotics, esp. toward nighttime since people can go into a coma. I can still appreciate what another friend wrote -- "the more a person gets, the more he needs, so trying to take fewer meds rather than more" is advised.

But Lynn's sister Mary Kay, a doctor in Ohio, broke my ambivalence. She told Lynn and me that nerve bone pain -- from bone cancer -- is some of the worse pain known to humans. For this kind of pain there's a "need to push it."

She explained over the phone there are two schools of thought on pain management. One, -- like the one I was influenced by, and the other, which she holds, -- that if too few meds are given and the patient "gets into a bad place," even MORE meds must then be administered to break the pain! In other words, there's "less swing if enough meds are given in the first place." The ideal is to keep control constant. That way, in the long run, the patient gets less medication. She also told me that coma is not a concern in a hospital setting. They'd be able "to catch it,",...even to administer a reversal.

I found her argument very convincing. But it's when I talked with Francis on the phone shortly after and heard him say his pain was "diminishing," -- and I could hear a big difference in his voice! -- his experience corroborated her theory for me. I saw how those meds in the last two days had worked to give Francis a reduction of pain, and a much better day today! This certainly doesn't mean he's totally pain free, but whereas he used to have to lie down to get relief, now he stands and walks around with his walker to get it, along with naps.

Speaking of naps, I'm closing the computer now. I got my first 8 hours of sleep in a month last night, and what a blessing that is! To be fresh for Round 2 coming up, I must learn how to let go the exaggerated part of my need for order, -- to give priority to my sleep! Even if I have to leave the dishes in the sink!

Good night dear friends,

Thursday, October 29, 2009

Hospitalized but Hopeful

Dear Family and Friends,
Francis went to Mercy Hospital this morning because of low sodium. (Some cancers cause low sodium.) He told Dr. Inhorn later that though sodium was the trigger, he would've asked to go anyway because his pain had become unmanageable. (As you may know, bone cancer is one of the most painful.) So the IV's are treating both sodium and pain.

But the hospitalization is also providing supervision to get Francis' "plumbing" system back into working order with "lactulose" a laxative that doesn't habituate. Dr. Inhorn thinks this is a key issue.

Dr. Inhorn is "cautiously optimistic" about Francis' prognosis. Though primary osteosarcoma is very rare in adults (It usually happens in children or young people,) he said, -- "Your cancer problem is a local problem."

When I asked him if Francis is likely to get kyphoplasty (inserting cement in the vertebrae) to stabilize the spine after radiation, he said no. He believes Francis' pain is due, not to collapse of the vertebrae (one of the "fractures" is old,) but to soft tissue pressing on the nerves.

I recently read that some people have temporary increased pain from cancer cells being destroyed and swelling of tissue. Dr. Inhorn confirmed this fact explaining that all this "debris" takes time to get flushed out. That's why it takes time to get relief, -- a month or two after radiation.

After giving Francis his nightly foot and leg massage (with sesame oil) to keep his skin healthy, I was happy to see that though he was pressing the buzzer to get more IV pain medication, he had me adjust his mini TV for the nightly news, something we've had neither the inclination nor the time and energy to do since he was first hospitalized.

Radiation treatment # 14 which Francis missed today will be back on track tomorrow via ambulance to Maine Medical Radiation Institute in the same neighborhood. Only seven treatments to go after that!

Though radiation causes nausea and fatigue, -- and likely damage to the intestines,-- it also relieves pain. So we're at a crossroads, so eager for Francis to be pain free, but forced to deal with more until the process is completed.

How long will Francis be in the hospital? Dr. Katz, Francis' primary care physician said we'd go from day to day. Once his sodium is built up again, his VNA nurse Kelly could check it at our home, but more often than once a week this time! (That's how low sodium was discovered late yesterday.) And surely, I could give him the lactulose!

I'm eager to get him back home but am honestly acknowledging, between visits to the hospital, it'll be good to catch up on my lost sleep. I want to be fresh for the next round, and the next one after that. With the doctors' okay, Francis will be using the alternative healing modalities even more to flush out the "debris."


PS Though, thanks to all of you, we're "hanging in there," Francis still needs a lot of rest, especially after radiation. So, without being rigid about it, and with a few exceptions, he's not generally soliciting visitors

Tuesday, October 27, 2009

I want him to fly

Dear Family and Friends,

These last six days have been very trying. A nurse friend who does end of life care called it a "pain crisis," compounded by the usual side effects. Often we've thought of people less privileged than we, people who don't have insurance or friends to help them, let alone those in war torn countries or depressed areas even in our country! How can they bear the suffering of bone cancer without the help and resources Francis and I have?!

(See what Stephanie has set up: To join the community of helpers, -- go to

Yet, when even with all these resources provided by flesh and blood angels coming to our rescue with all manner of support, the battle against cancer is wearing.

I had a good conversation with Dr. Inhorn today and Francis' VNA nurse and doctor friends about how to manage the pain crisis. All agree that Dr. Inhorn's prescribing decadron beginning tomorrow -- a steroid that will alleviate the hard edges of the medications' side effects -- should help Francis and bring back his smile.

We hope and trust the small signs of progress will fulfill their promise. Already, this morning, in spite of yesterday's desperately challenging day, Francis felt a new kind of ease in walking. Before I knew it, instead of waiting for me at the foot of the side entrance stairs, so we could go to his daily radiation treatment, he was walking down the incline toward the car with his arms out like an airplane..

I want him to fly.


Saturday, October 24, 2009

A Time of Great Intimacy

Dear Family and Friends,

Sometimes I wonder -- and especially in the last three days -- if I should air before the world the nitty gritty side of a cancer patient's ordeal. How to balance meds to get relief from pain and nausea? Usually one or the other works, and no matter what, side effects are always lurking.

So when a friend wrote this, I was encouraged to continue:
" Sharing this painful journey with friends by E-mail has been a gift to us all. I always go back to a line from Yeats, "A terrible beauty is born." All the very earthy body pains and needs, embraced by loving tenderness.
It is a time of great intimacy. A gift in the midst of anxiety. We all wonder if we will be able to endure as well as you are doing."
The most difficult side effects this week were nausea and constipation, both of which are caused by the meds. The nausea meant Francis hardly ate. And he has already lost 30 - 35 lbs (though he still looks handsome as ever.)

And the constipation !! Thank goodness the VNA Nurse agreed with me we shouldn't wait another day (after 4!) to give an enema (as a nurse at the clinic suggested, when the suppository the night before had not worked!!) So that VNA nurse came right over and showed me how to administer it so I'll know for the future. Even then it didn't work while she was here!

The reason it worked 3 1/2 hours later is due to what Dr. Inhorn explained to me: "reverse peristalsis." What won't go down goes UP! So even though the nurse thought there was "nothing there," thank goodness Francis' primary care physician said -- "Go ahead and do it anyway." And when it worked, we celebrated. We whooped with joy and opened the windows and lit the aromatic candle that our good friend and Francis' chiropractor had given us.

After Francis' third acupuncture appointment today, something amazing happened on our way home. In spite of having heard from Dr. Fern Tsao last week a list of things to avoid, -- like dairy, and by implication, -- wheat, when we passed by Mr. Bagels, Francis, who almost never goes out and buys a bagel, and whose appetite surfaces only on occasion, when he's not nauseous from the meds and radiation, said he wanted to eat a bagel!! So, even though we had passed the shop, -- so glad to hear him desire even this food, -- I assured him we could turn around. So I turned onto the next street to make our way back to the bagel shop. Right there in the car he ate more than half the cinnamon and raisin bagel with cheese in it!! And with gusto!! His clear urge to eat it must have come from some gut place that needed that bagel. And it stayed with him!

Tonight when he ate a small portion of carmelized onions with the cancer killing highly prized maitake mushroom that Tree Tenney culled in the woods for us, -- we celebrated again. He even ate rice and the kale which Penelope gave us from her garden.

So you see, dear friends, it's friends like you that carry us along with your love. That's why, dear Barbara, -- if, as you say, you "wonder if we will be able to endure as well as you are doing," we say, -- make many good friends. As all of you are such good friends!

PS I MADE time (at Francis' insistence) for a nap this afternoon.

Wednesday, October 21, 2009

Treatment Plan and Progress

Dear Family and Friends,

Francis and I met with his radiology oncologist today, Oct 21. Provided the cancer doesn't spread -- since that's a "problem with sarcomas" (So we need those prayer/vibes !!! ) -- Dr. Zilliotte said -- "there's a good chance to control it... (and,) it's a realistic goal to shrink the cancer for good and control his pain." So they'll "zap it hard" with "a good dose" of radiation for a total of 21 radiation treatments. Unless something unexpected happens 13 more would bring us to November 9 for his last treatment.

Witnessing closehand the challenges of dealing with the side effects of radiation and drugs, (Never mind chemo on top of that, and surgery too!) I admire cancer survivors as never before.

Blessedly there's the light with the dark. Francis, who has lost a lot of weight already, is beginning to get out of bed on his own now. He walked around the house by himself while I was outside directing two helpers about what still needed to be done to winterize the gardens. Then, for our M-F 10:30 appointment this morning, instead of using a wheelchair to go from parking lot to building, he walked holding my arm, having to bend his head a few times to control dizziness. Those two forays wiped him out for the rest of the day. But, when the VNA nurse took "his vitals" later in the afternoon, she noted they had all improved. All because of the walking. So we're encouraged!

From my end, I'm almost embarrassed to admit that even with all the help we're getting, I still cannot get all the work done in time to do my yoga practice (which my hip & knee absolutely need.) So I'm sleep deprived all the time. My plan then, is to ask Stephanie to invite helpers who can take turns (a Favor Brigadeer) to come either late afternoon or early evening to take care of Francis' needs while I do my yoga practice.

Francis and I are members of a small nation-wide community whose members meet via a conference call once a month. Since Francis and Mary Alice in California are both battling cancer, the facilitators sent this prayer to open our meeting this Sunday. I thought you might like it too.

Into Your Silence…..
God of this creation, of this day,
of this moment, we speak words into your silence –
but with profound reverence.
Our heads are spinning with astonishment at the universe
which we find ourselves in, living our lives within the phenomenon of evolution, an unfolding,
changing, unfinished reality.
To be part of it is an honor.
We give you thanks as we look into the abyss of your energies.

William Cleary (We Side with the Morning)

Monday, October 19, 2009

Agony and Ecstasy

Dear Family and Friends,

Agony and ecstasy. Admitedly, that expression may be too dramatic. But it conveys what we're going through right now.

Francis had his first acupuncture appointment with a Chinese acupuncturist, Fern Tsao of Yarmouth ME on Saturday morning the 17th. He found it "comforting," and for the rest of the day he was astounded to be feeling better than he had in weeks and even in months! In fact he didn't want to move in order to savor being pain free.

Then you can imagine my joy Sunday morning after the alarm went off to hear him calling out to me, on our bed nearby, -- (and I wrote it all down in my dream journal verbatim:)

"There's nothing like a natural sleep, -- 8 hours with no sleeping pill! I turned a corner! The radiation yesterday (his 5th) helped, but it needed a boost. The acupuncture treatment gave it that boost. And boom! The acupuncture treatment said to the cancer: 'Get out of there!' ....This one, -- WOW! This corner was extraordinary! There'll be more bumps on the way still to go. But this was a big, big boost! There'll be other obstacles but a big obstacle was overcome here!" That was clearly ecstasy for us.

But the following two days have been difficult, esp. today when the pain returned, and the nausea too. The nausea seemed almost worse than the pain, just as it did last week after which we tried to ease up on the hydromorphone and use compazine and ativan instead (also powerful meds) that are supposed to ease nausea. But as one VNA nurse told us: Even anti-nausea medication can cause nausea!!

It's a real kind of agony for me to see him unable to keep his food, and to be dizzy and wobbly walking from the car to the acupuncture clinic. Maybe the nausea is from the radiation (treatment # 6 today.) The doctor admitted at our first visit on Oct 9 that "the intestines are in the way" between the killer radiation beam(s) (my word) and the cancer cells whose destruction eases his pain.

So tonight Francis tried an Ume-Sho-Kuzu (Kudzu) drink recommended by Lisa Silverman who teaches macrobiotic cooking, -- a drink that Fern the acupuncturist recommended too. I'm glad he found it acceptable, -- so he can eat!!

Tomorrow will be another challenging day for Francis. Just having two back to back appointments in itself will be tiring for him as we discovered, -- simply from two appointments (as happened today) with rest time in between. After his 11:30 am radiation treatment at Maine Med in Portland we'll be driving to Scarborough for a 1:00 pm "mapping" appointment. But with the diagnosis finally in, they'll be able to fine tune the radiation treatments now, -- as Dr. Inhorn told me -- "to minimize" the damage. He confirmed that whatever damage is done to the organs will heal in time.

Through all of this we're rescued by small moments of humor, e.g. after flossing his teeth I said, -- "Okay, eye drops next." So he opened his mouth. Then last night after a friend emailed relating how lovingly our Pax Christi friends spoke about Francis during the retreat weekend we missed, he said a few minutes later: "I just had a black humor thought: People would die to hear such tender sentiments expressed about themselves!"

Thank you all for being in the "Prayer Brigade," as our dear friend Allen Moore in Arizona called it! I told him that this brigade is "numero uno!" We need it especially now!

Loving gratitude,
PS The sweet chickies continue to humor us too. Even with cooler weather Francis can hear them cackling when I approach, or when one of them lays an egg. Sometimes we get 1 or 2 or 3 a day. One day earlier we got 4. I hope Francis' nausea will disappear tonight with the kudzu-ume drink so he can enjoy another of those delicious eggs tomorrow!

Friday, October 16, 2009

Diagnosis finally came

Dear Family and Friends,

The diagnosis -- "a tough call," -- finally came today. The pathologists at both Mass. General and in Portland (both hospitals) believe it's an osteosarcoma, a primary cancer of the bone. It's "unusual looking...not typical." Because of the "uncertainty," the Boston pathologists would like to get more tissue, but we're glad Dr. Inhorn said "This is good enough for me." Another supportive doctor friend said "We want help, not perfection."

Francis had five radiation treatments in the last five days. Four more are planned Mon through Thurs next week plus another "mapping session" at the radiation center in Scarborough ME so that the application of radiation can be administered at different angles to minimize damage to surrounding organs and tissues. The good news is that this kind of cancer is "very radiation sensitive." So our hope is that they can get it all. And this is a hope and trust bolstered by your ... -- as Sue Ewing put it so sweetly, -- "praying and vibing!"

The "Cooking for Cancer Prevention" class I went to last night also gave me a lot of hope. Lisa Silverman's presentation made perfect sense to me. As she spoke, two cooks besides Lisa were preparing five macrobiotic dishes we participants sampled at the end, -- absolutely delicious. One of the two chefs opened the presentation with her own story of how macrobiotics brought her (unbelieving even as she tried it) back to life.

Thank you all dear friends for your cards and prayers and emails and for your assistance expressed in many forms! A new neighbor Chris whom I barely met once or twice as he passed by when I welcomed him and his wife into our neighborhood actually signed up on the Favors Brigade! How did he even know about Francis? Was it you who told him, Jeff? He came over last night while I was at the cooking class (and while Melora prepared Francis' small supper and massaged his feet and did the dishes....) Chris cut down the frostbitten pole bean vines and emptied more rain barrels. I have yet to talk with him face to face.

Your heartfelt expressions of concern move us deeply!


Wednesday, October 14, 2009

After Three Radiation Treatments

Dear Family and Friends,

Today after a nap following his third radiation treatment, Francis seems to have begun turning a corner! For the first time since his hospitalization on 9/24, he felt like eating. The awful nausea of the last few days has receded a bit. Even the pain seems to be decreasing a bit.

For me it's still unending activity even with so much deeply appreciated help on all sides. But, -- the "Daily Care Log" I created, which Stephanie formatted for me in Excel, has greatly eased the scrambling! Now at a glance I have an accurate record of everything done and everything to do every day -- check blood glucose, administer insulin, and meds including eye drops and PT etc. etc. The VNA nurse joked -- "The key questions we ask are: "How's your pain and your bowels?" It's a balancing act adjusting the meds to make it all work. But I'm learning how, and feeling proud I can support Francis in this way.

A remarkable thing has happened since Sunday. Knowledgeable friends who speak from experience have offered us valuable information about alternative therapies. Francis told me he remembers his parents in New Brunswick Canada trying whatever new therapy the doctors offered to ease his asthma. So he's open to these therapies!

One person has offered Francis medicinal mushrooms. Two others, cancer survivors, brought Francis nourishing soups that helped them heal. One who traveled to Boston for six years to the cancer clinic has found even deeper healing through macrobiotics. After a long talk with her yesterday I made three appointments for Francis today: Dr. Fern Tsao, a Chinese Acupuncturist in Yarmouth north of Portland regularly treats people undergoing radiation. And I registered today for a class on cooking to prevent cancer taught by Lisa Silverman, an authority on macrobiotic cooking. We're so fortunate to have both of these resource people in our area.

Then this evening Dr. Jim Melloh, a geriatric, rehab and hospice physician who has dealt from all angles with many of the issues before us came to our home and gave Francis a one hour and a half treatment. He told Francis it was a 1,000 year old tradition taken from Aztec medicine (which he has been studying for five years.) I met Jim through yoga, the dances of universal peace and permaculture. Jim elevated Francis' hospital bed to facilitate "gentle hands on 'energy work,' " lit a candle, and began chanting in another language as he laid his hands on his head, his feet etc. I was lying in our own bed resting, only 15' or so away and was mesmerized by my own fatigue and the healing chanting. When I awoke from a restful sleep I watched Jim's face deep in concentration. It was prayer, really! Jim so generously offered for us to "call any time with questions ... or call to ask what to do in the middle of the night." Amazing! I am humbled by so much goodness!

Francis and I sing daily together in Aramaic the hauntingly beautiful melodies for the Lord's Prayer, and some of the Beatitudes, Jesus' sayings, sometimes while I'm massaging and oiling his legs to keep his skin healthy with so much reclining, and sometimes en route to the radiation center. They soothe us. His favorite is -- "Blessed are the pure in heart, for they shall see God." The transliteration by Dr. Neil Douglas-Klotz, the Aramaic scholar with whom I've been studying for many years is stirring to me: I've pieced it together from the contextual notes in his Prayers of the Cosmos: "Blessed are those whose heart has a deep sense of passionate purpose and the audacity to feel abundant inside. They shall, in a flash of insight, see God everywhere."

The floor in our bedroom is still strewn with the now organized but still unfiled business papers Stephanie sorted on Sunday, the kitchen dishes need to be washed... But Pamela helped me put away the unhung clothes on Monday, and today Winnie and Matt winterized the garden, combined the compost piles and started emptying the rain barrels while Bill got Francis some tasty varieties of organic baby food that he and Paul bought, -- something easy for him to eat after his post radiation naps. Lee our "son-in-law" in quotes, -- dear Lee -- is in process of simplifying our bill paying (I hope tomorrow I can find time to call the credit union and the bank to give him more info.) Holly is coming in the morning to help with those simultaneous morning tasks so I can give Francis a sponge bath before going to radiation, and I've already given Stephanie another "favor" to post so we won't lose the garden produce sitting in the side entrance.

Oh yes, one last thing: The Physical Therapist came yesterday. He moved into Francis' room, his most comfortable chair, a swivel padded rocker, from the living room inviting him, when he feels pain free enough, to sit in it 5, 10 -- 15 minutes a day. Then he made suggestions for the shower - detachable shower head and stool with back support to sit on in the tub. It was enrouraging to envision his rising from his bed at other times than just for trips to the radiation center or standing to pee or use the commode. The suggestion was not lost on Francis. He tried out the two chairs today, only for a few minutes. But we can visualize the time coming, -- as another good friend, a doctor, told me: "The radiation will get him back on his feet."


Sunday, October 11, 2009

The Favors Brigade

Dear Family and Friends,

I can appreciate now, in a way I couldn't before, what it's like caring for a bedridden loved one who's seriously ill. Those who've gone through it know all its ramifications.

There's been such joy and relief in recent days to have one friend after another delivering a meal a day! They've been delicious! I've also made a list of many of you local friends (and a few cousins) who offered to help in other ways too! But even organizing this takes time.

Seeing me tearfully admitting today to feeling overwhelmed, Stephanie Abrams (the new owner of Portland Yoga Studio) and Denny, another "angel," brain-stormed how to make these "works of mercy" of yours work even more easily for me and Francis. This is what we came up with:

Stephanie will be our "Favor Brigade Coordinator." I will give her a list of favors that would help us, -- e.g. sitting with Francis to take care of his needs while I go to a "Cooking for Cancer Prevention" workshop on October 15 from 5 - 7 pm.

Then those of you who can and are willing to do this or that task, (having given Stephanie your names by emailing her directly ahead of time) -- will get an email from her confirming that this will be YOUR FAVOR to do for us!

So if you would like to join the "Favor Brigade," please email Stephanie to tell her so --

Now a few stories:

Yesterday Jan, did our laundry, Pamela sorted and cleaned out the fridge to make space efficient, and Pat harvested a few ready-to-eat-veggies in the garden as well as shoveled extra sand inside the chicken run since the first sand laid down weeks ago had settled to the point where the sweet chickies, in taking their dust baths, had wiggled their way down to the hardware cloth!

Later Pat emailed: "I so enjoyed your chickens. They have such distinct personalities. One “red head” was especially personable. She kept pecking at my leg from the side or behind as though to say, “Hey, pay attention…I’m hungry!” It was so funny to see them follow me around in the coop area. I was also amazed that they never tried to escape when I went in or out of the caged area."
I have been giving Francis massages for months trying to ease his pain. (We originally thought the problem was musculo-skeletal.) But I'm massaging him again regularly now that I've discovered the great importance of massage for someone bedridden for a long time, -- to prevent embolism and blood clots and skin breakdown. (Francis has spent the last 17 days in bed, and to some extent even before he was hospitalized on Sept 24.)

We're very fortunate that even in the months before he was hospitalized (on Sept 24) and in pain, he turned to yoga for relief (which he got, though relief was temporary.) As a result he kept himself strong.

So when the VNA nurse checked on him yesterday and was pleased, e.g. that his skin looks good... (She said he wasn't typical,) -- that made me happy. The narcotics are so drying I'm using sesame oil on him. The massage is also just for the pleasure of it, to distract him from his discomfort, always having to lie there, though he's been so patient.

Francis has been proud of his daily yoga practice. Even in the hospital, (the PT enjoyed telling me) -- when she brought him down the hall for his walk, he surprised her by holding the railing, straightening his arms and easing his buttocks down for a good stretch!

Last Friday the doctor and nurses at the Radiation Institute who wheeled Francis (on a bed) out to the car enjoyed my telling them Francis did his first handstand at age 62. Of course since his 70's he doesn't kick up the regular way anymore, (and I don't either) but uses the space between two walls to walk up backwards on the wall he's leaning on. (I use a doorway, but he's too tall for a doorway.)

Yes, I know it's late.

BUT I had a deep muscle massage of my own this evening to release my right upper arm since I couldn't on my own totally clear out the spasm I got last week. The massage done right here in our home -- (and gratis from expert rolfer Christina McChristian ...She wouldn't take no for an answer... did me a world of good!

AND, I really wanted to get out this note tonight! I can sleep till 9:00 since that's when I give Francis his long term insulin. He's turning into a later morning riser these days (as I usually am) though he's been sleeping for some time now.

Francis and I thank you from our hearts, dear family and friends. You're all so generous and loving it moves us to the core.

Friday, October 9, 2009

Time only for essentials

Dear Family & Friends,

The challenge is increased by having to keep diabetes under control. It's been quite a balancing act when so many factors are involved. The Diabetic Center's consulting nurse Kathy Bears has been very helpful. So has Francis' VNA Nurse, Kelly St. John and the on-call VNA Nurses I've had to turn to at odd times. After two ping-pong blood sugar days, Francis' blood sugars were ALL normal today though there was a lot stress getting to and facing that first 3:00 pm appointment, -- finding the place, getting the parking card, etc at Southern Maine Radiation Therapy Institute.

We had a long interview with his radiology oncologist Dr. Philip Villiotte, followed by "mapping" and planning the radiation sites for a 3:15 Monday appointment. We've been given a schedule of daily radiation treatments for the next two weeks. Kathy Tosney got us there and back around 6:30 pm and Francis has been sleeping ever since. I couldn't even wake him up to check his blood sugar; had to do it myself and give him the 12 hour insulin around 9:00 (1 hour late.) He's in a very deep sleep now, -- a healing sleep I know.

NO WORD yet from the Harvard University teaching staff!! (I'll share that info as soon as we know. ) After talking with Dr. Inhorn his medical oncologist on the phone Dr. Villiotte told me -- "They know it's cancer, but it's not a garden variety type of cancer,"

In spite of all, with Francis' pain in all positions except reclining, I'm encouraged by our out of state support doctor who said "What's important is that we're making progress! We're on our way. They'll be able to quickly figure his response." And he told me, -- to prevent embolism from all that reclining, "Keep his legs active (passively) as much as possible. I'm doing exactly that.

AND, as Jane, nurse/niece suggested, we'll try to get that PT order through which I asked for yesterday. Still no response! It takes effort to navigate the medical system. That's why I haven't even had time to look at email today. And I need to get to bed now!

I'll also try to get a "transport chair" through Nancy Perkins, the VNA nurse who's coming tomorrow (my former yoga student!) to make it easier for Francis not only to get to the car and to the Radiation Institute for his appointments, but to go the bathroom to take a bath.

Can you believe it, -- though he's been using first a make-shift commode, and a real one delivered this morning, -- I gave Francis a bath in our bathtub last night! He wanted it, and I knew we could do it as we had done on Sept 24 just before the appointment with Dr. Agren from which he was hospitalized. It was difficult for him getting there and back, leaning on my arm, but we did it. With the tub's support bar to help, he slid down partway into the warm water with his head resting on the back of the tub and made sounds of pleasure and relief.

Thank you all dear friends for your powerful prayers and loving support. As a Quaker friend told me tonight, we're being "kept in the light," and we feel the love surrounding us.

Wednesday, October 7, 2009

Prayers answered

Dear Family and Friends,

Yes, finally -- Francis has a radiation appointment in place for Fri at 3:00 at Maine Med!

And the Meal Brigade is all set up, thanks to Lynn & Susannah at the blogspot.

I can't wait to see Francis free from the pain that keeps him supine virtually all day long! We ordered a commode today.

It's been a most challenging day juggling umpteen details added to the diabetic dance with blood sugars under such stress as this, but we're sustained by your prayers and support.

Much loving gratitude,

Food Brigade Sign up

Hello, All:

This is Susannah and I'm filling in for Elaine at the moment:

If you are interested in making food (vegetarian) for Elaine and Francis, Lynn has created a online sign-up sheet for the Food Brigade:

Tuesday, October 6, 2009

Need your prayers TOMORROW!! Wed Oct 7!

Dear Family and Friends,

Even though I'm almost too tired to be writing this, I'm emailing anyway to ask for your prayers -- good vibes etc tomorrow mornng between 8 and 8:45 am. Focus them on Francis' doctor.

Dr. Inhorn, Francis' oncologist gave me a report today. He said they're "pretty sure Francis has cancer." But it's such a rare kind of cancer whose exact diagnosis still eludes them, that he sent it to Harvard University to get their consensus. Which of the 20 kinds of already rare sarcoma could it be?

If in two days they don't have a diagnosis, he'd be ready to do radiation, because he knows radiation would help no matter what kind of cancer it is. We accepted that, even though, except for 3 wobbly trips to the bathroom, Francis is now reduced to a fully supine position day and night. Even with all the meds, sitting up to eat is too painful to do.

But a long talk tonight with a very knowledgeable friend helped Francis and me grasp the whole situation with new eyes. So I plan to telephone Dr. Inhorn tomorrow to urge him to act NOW.

So after my bath and some relaxing yoga, I'll review my prepared notes preparing for that 8:00 am call.

I know your prayers will move our doctor to act. As our friend said, "Your doctor is right
there. He just needs a little nudge. That nudge is your energy focused on Dr. Inhorn tomorrow,
either at that time or when I can reach him.

Two more things: Because Francis is functionally impaired, my willing, loving services are needed from morning till night. So Lynn (Rowan's mom, -- remember?) is in the process of organizing a meal brigade for Francis and me. Details to follow soon.

Secondly, right now I've had no time to read any emails. I expect things will ease up once Lee
(Rowan's dad) helps us use technology to pay bills -- something Stephanie offered too, by the
way...Thanks dear Stephanie!) But IF YOU WANT ME TO READ SOMETHING IMPORTANT I
NEED TO KNOW, WRITE IN THE SUBJECT LINE: READ THIS. I will indeed read all emails
later when Francis gets relief from his debilitating pain. He's a sweetheart, still so patient! But we must get him pain relief as soon as possible. Being disabled as he is is very risky!

Much much gratitude,

Monday, October 5, 2009

Francis at home in hospital bed

Dear Family & Friends,

He's asleep now in our yoga living room, facing the SW bow windows and to his left the glass door through which in the morning he'll be able to see the chickens.

Biopsy results in on Monday, but needed more refined analysis!!! So at 8:30 I'll call Dr. Inhorn the oncologist. VNA nurse will be calling between 8:00 and 9:00 am.

No time for many details: full days. I'm his nurse now and the one paying the bills, getting the groceries, going to the credit union and all that.

First day 3 eggs were lain!! I gave one to the neighbor who helped move the futon to make room for the hospital bed, and the other to Susan C. who helped prepare the room for my sweetheart. Pamela (yoga teacher and friend) made my salad, vacuumed the rug, put together a bouquet of garden flowers etc... and I'm off to yoga and bed now. Alarm set for 6:00 am -- for Francis' pain pill. Will catch up on my sleep in the PM. Adrenaline is helpful when needed, isn't it? ;o)


Sunday, October 4, 2009

Oct 4 Sun Relieved

Dear Family and Friends,

It'll be serious enough within the next few days learning what the biopsy reveals. But I discovered tonight how ignorance and misinterpretation can sound a false alarm.

When Francis' nurse told us last night as we chatted a long time, that a living will was not enough to prevent a medical rescue if "something happened" to Francis, -- that we had to tell the doctor directly not to resuscitate him if that's what he wanted, my heart felt very heavy. Heavy because she repeated he was highly medicated to prevent pain, and with the side effects of that medicine, and at his age, anything could happen. I heard her say "Code 4."

So tonight when the doctor came to officially get his "advance directives," I asked her point blank: "Could you tell me honestly why Francis has been put in "Code 4 category?" She looked puzzled, - "Never heard of Code 4!" she said. Then she realized what I was alluding to, and explained that ALL patients are put BY DEFAULT into category -- "Full Code," meaning if the patient's heart stopped etc etc, they'd rush in and get it started again. The other category for all practical purposes, is "DNR," -- "Do not resuscitate."

Neither Francis, now at age 82, nor I, if I were in his shoes, would want to be resuscitated. No, not with some of us suspecting, -- but who knows... we'll know tomorrow -- maybe bone cancer? (which is very painful -- and pain is what he's dealing with.) No, in his situation, we would opt for DNR,-- as the doctor put it, -- " letting nature take its course." DNR is what he chose.

But I was relieved. It wasn't Francis specifically who was categorized as unusually vulnerable, it was regular hospital protocol! Our friend Susan Christian expressed it well in an email response when I shared my concern: "What I hope is that the code business is more a piece of hospital administrative procedure than an indication of anything imminently happening. You know how they do have to cover themselves."

Our niece/nurse Jane also made two relevant points:
1) That it's "confusing" to use the expression "Hospice palliative care." Hospice in itself is a definitive 6 month stay. But Hospice also offers outpatient "treatment modalities" of dispensing palliative treatment.
2) Secondly, when she visited Francis today Jane didn't find him very highly medicated as said to us last night. She explained that high doses of narcotics make healthy people "druggies," but when used to relieve great pain those meds are readily absorbed and don't make them "druggies."

All in all I feel hopeful tonight. Not only because of what that same nurse said, -- that even people with malignant cancer can live for years with palliative treatments which also reduce pain. But because Francis seemed more himself again tonight. Maybe he's getting more used to the very medication he couldn't tolerate before he was hospitalized. By now he's totally off IV's, just on oral meds and the pain patch. They're getting him ready to come home. I eagerly await that!

Francis has it in him to live much longer. His Aunt Irene died only two months short of 105.


Saturday, October 3, 2009

Oct 3 Sat Whale Sightings

No Results Yet & Whale Watching

Dear Family and Friends,

The "preliminary results" of the biopsy expected yesterday did not come in! Sigh! To prepare him for coming home the nurses are using oral meds and pain patches tripled in doses now so he can be more active. Yet all he could still manage was one walk yesterday and two today.

Even if, highly medicated as he is (as niece/nurse Jane noticed when she called him, --- Francis used "slurry words," -- he hasn't lost his sense of humor. He told me when he awoke during the night he felt as if he were out at sea whale watching. His roommate's snoring (He weighs 306 pounds) reminded him of whales, or sounded like walruses. It's a story he used to cheer up over the phone a long time friend from out of state who is distraught about Francis' predicament.

Picking up a Second Hopeful Clue

Whether Francis' treatment plan will call for radiation or not, as I hope we'll learn on Monday, I just learned a second thing about palliative radiation: not only that it can offer significant relief of pain, but, as Francis' nurse told us tonight, people who get "hospice palliative radiation" can live for many years.

I'm so eager for Francis to be freed of pain enough to live a normal life. Finding relief only in a reclined position, -- even with meds !! -- is no way to live.

I DIDN'T EGGSPECT IT (as John Wirtz would say), -- But the chickie pullets laid not one but two eggs in a coop corner today! So I brought them both to the hospital to share with Francis.


Thursday, October 1, 2009

What a blessing friends are!

Dear Family and Friends,

What a blessing friends are!

And how helpful communication technology can be!

I feel much more hopeful tonight. The input of a handful of our doctor/friends whose views I asked directly, (and a friend also asked her doctor/friend from out of state) about radiation has given Francis and me a new awareness of its potentially great benefits -- IF that's what's called for. So we are open to learning more, and it's coming soon.
Dr. Roger Inhorn told Francis today that he expects a preliminary report on Francis' second biopsy sometime tomorrow.

Francis' new pain patch has been doubled in strength so he's definitely more comfortable now though he's still more comfortable reclining. One walk to the nurse's station was enough for him today. But he looked so good tonight it's hard to believe something's going on.

I brought him some popcorn and a box of raisins tonight to help prevent a second round of constipation which the meds cause. I deliberately make extra to share at the nurse's station.

Egg # 4 & Francis and the Chickens

One of the chickens laid the fourth egg today! Ken's eyes lit up when I gave it to him and his wife Laurie Birmingham who live across the street. They're our key "chicken helpers" along with other neighbors who check on the pullets now and then to be sure all is well. Ken closes the pop door at night.

As recently as three or fewer weeks ago Francis loved to open the pop door in the morning! Even though to save him time I would pick some greens the night before, he enjoyed taking pruners out to pick extra big leaves of comfrey himself to feed to the chickies. Sometimes it coincided with my going to the bathroom. What fun to watch him bending over to stick his head into the pop door opening baby-talking the chickens on their perch to hop down and come out and play. And do they ever! They're especially frisky in the morning running and jumping and even flying inside the roomy run, and, if we didn't bring food, cackling and singing for it.

Francis gets a kick out of this, and even just watching them. One day when he was feeling down with pain he poured himself a glass of wine and sat in a picnic chair in front of the coop's run just to watch these very social, entertaining creatures.

Good night dear friends, and thank you for your prayers!


Blogspot posting problem solved

Dear All,

Anne Underwood suggested what Charlie Remy told me about from the beginning: to use I should have gone with that right away, but remembering the look of simplicity on the blogspot used by Mary Dunn, -- my friend who died last year, I opted for that.

Until the switch is made to caringbridges, just keep going to . You'll be directed from there.

And thanks to those of you who emailed me with other possible solutions.

Now for more rest before visiting Francis after I pick up the winterized car.

Much loving gratitude,