Monday, November 30, 2009

Downs and Ups

Dear Family and Friends,

Friends with close-up experience of cancer already know what I'm beginning to learn, -- that pendulum swings are to be expected.
One wrote: "I know that it will be up and down, (both of my parents had cancer and went through radiation and chemo)..."
Another pointed to -- "the most illusive of all, those pesky bowels!"
And a third enlightened me further, explaining: "Doesn't matter how well you eat. Don't worry about it being habit forming.... You really have to take these things on a regular basis because those meds are drying and also slow GI motility. You may even want to keep a couple of those saline fleets enemas on hand as well."
In other words, massaging the colon not to lose natural peristalsis is no match for the side effects of powerful narcotics.

So that's what we've been dealing with in the last two days, -- the whole GI tract from top to bottom. The chart I created to help us discern what might have caused the seeming downturn in ability to keep food, and to evacuate it in good time, may be of help to another caregiver, so I'm attaching it. It's helping us notice patterns, e.g. Francis has no trouble digesting rice (Alhamdulillah!) but maybe even tasty beans cooked for 2 hours may be too much for him right now. But he ate turkey & trimmings on Thanksgiving Day, -- right? Go figure!

Well in the middle of all this, we received two gifts, -- the help of Sally and of Meg.

Our good friend Sally who's collected delectable macrobiotic recipes for the last six years spent Friday afternoon cooking with me. Though Francis spent most of that day sleeping off his Thanksgiving escapade, he made a comment Sally got a kick out of, -- that we were "cackling" in the kitchen! Sally showed me how to cut and prepare blanched vegetables cooked separately in the same pot, but dunked in the order of mild to strong taste. Each is then removed with a Chinese skimmer. (Sally will get us one locally.)

The veggies are so tasty served with a dressing I immediately fell in love with: tahini, lemon juice, shoyu and umeboshi vinegar. She got the recipe at one of Warren Kramer's workshops. He's a well known macrobiotic counselor from the Kushi Institute in Boston. Before she left Sally promised to copy some of her favorite recipes from the bulging spiral notebook she brought along, -- her "bible," she called it.

It's interesting to note that Sally departs from this, her preferred way of eating, when, for example, summer tomatoes are in season. She doesn't avoid them then just because they're nightshades. And for Thanksgiving she made a roast pork with cheese! Hardly a macrobiotic dish!

After Sally left Francis also enjoyed the miso soup and tender veggies cut Japanese style, though he didn't like the dressing quite as much as I did.

The other gift is the arrival in our life of Meg Wolff. When I sent an email request -- "Helping me cook at home for Francis" through
Meg responded !!! I'm exclaiming here because you see, Meg teaches macrobiotic cooking!

In fact, Meg is one of the two possible Maine macrobiotic counselors Francis and I had to pick from some weeks ago. One of the main reasons we chose Connie Arnold instead is that we heard Meg travels a lot, giving talks, and also because someone we know highly recommended Connie. If you check out Meg's website you'll see what a vibrant talented person she is. Most startling is the cover of Meg's book Becoming Whole showing her with right leg amputated, without prosthesis, arms uplifted.

Meg explained that she's now recuperating from her third surgery, and said it would help her too to help us with cooking. She invited us to go to her home in Cape Elizabeth so she can teach me about macrobiotic cooking. Francis could lie on the couch she said, and look at the ocean. That was to have been today. But we were both wiped out by yesterday, today, so we're in the process of rescheduling that date.

In the meantime we've discovered what a generous person Meg is! She has already delivered to our home some delicious barley mushroom soup (our supper tonight) and a Japanese gelatin dessert called kanten. Made from seaweed it's not only full of nutrients but delicious. Francis likes it too!

The friend I quoted at the beginning of this email who said "I know that it will be up and down..." ended with -- "but you certainly seem to have had some good solid ups." Certainly these two openings into our macrobiotic adventure are "solid ups!" Since we are what we eat, with a healing diet to boost him, I've got high hopes that Francis will join the ranks of those who are cancer free. And I will add, though they're not easy, -- pendulum swings and all.

Thursday, November 26, 2009

5th Reason also a surprise

Dear Family and Friends,

(Just returned from my bath:) How could I have forgotten TODAY?!!

Yes, going to cousin George Remy's home in Gorham to share the Thanksgiving meal he and Heidi and Charlie prepared this year (We alternate years) was special indeed!

Charlie was home from Grad School at Simmons. He's getting his MA this month in Library Science so it was interesting catching up with George and Heidi and talking about Charlie's job prospects and the excellent one hour radio interview on the subject of asperger in which he recently participated:

It also gave Francis another chance to get a change of scenery, you know, -- not just being cooped up ;o) with me all the time! ;o)

What's surprising is that Francis called George a few days ago to tell him that in no way could he make it for Thanksgiving. So we had planned a quiet day with a friend volunteering to bring a casserole and tofurkey. But after yesterday's escapade at the Thai restaurant, Francis called George again to say he could!! What joy!

The surprising part was doubled, however, because yesterday afternoon after Francis' call saying we could come, I was beginning to get a sore throat. But I applied the full remedies I know of to nip a sore throat in the bud: -- lots and lots of sleep and water and Virastop, Echinaecia, gargling listerine, and sucking on a half clove of garlic cut on two sides... Along with these, the key for me is mainly to stop when fatigue hits. And if sleep is difficult, -- SAVASANA, a most deep restorative practice. It releases tension from within. By nighttime, but clearly by morning, I knew I had nipped it in the bud, and sure enough, there's no trace of a sore throat today. The letting go did its magic.

So I'm off to sleep right now. And when Francis awakens (He's been sleeping for over an hour,) we'll start his night ablutions before we both give thanks for this very special Thanksgiving Day with the Remys.


PS The hens continue to be joy and fun, even the work in caring for them. Three of them were sitting on the perch in the outside run this morning. Three of the six lined up close, one of each color, -- red, white and black, Sadie, Nelli and Midnight, it was a striking sight. And their eggs are the very best!

Surprising reasons for thanks giving

Dear Family and Friends,

My First surprise -- that while I was in the chicken coop Tues morning, Francis, who couldn't get up out of a chair for almost three days because of a med that worked (which we then dropped,) -- used his walker to get to the side porch and bent over to pick it up! Shortly afterwards he knelt on our own bed (on a frame 3" from the floor) to facilitate my positioning a suppository, but then raised himself up again with the walker's help, virtually from the floor! All with some alacrity!

Second surprise -- that someone for whom within two days 2 suppositories and an enema yielded mostly only mucous, -- and especially for someone who had lost his supper the TWO PREVIOUS evenings, I was surprised that this someone requested on our return trip from Freeport that we stop at the Thai Restaurant near our home! He craved fresh spring rolls. So we stopped and he ate two pieces and shared some of my meal of Ginger Tofu with Brown Rice. All with no problem! I mean, though he ate slowly, he didn't have to wait as long as usual between bites. And he didn't lose this supper.

This episode reminded me of our stopping to satisfy Francis' craving for a bagel some weeks past while returning from seeing Dr. Tsao, (Fern,) his acupuncturist. This time we were returning from his first treatment (since the bone cancer diagnosis,) of Cranial Osteopathy (as distinguished from Cranio sacral therapy which some massage therapists offer.) Francis has been seeing Dr. Kevin Zorsky his DO regularly for the last 20 years. Powerful treatments these -- Acupuncture and Cranial Osteopathy!

Third surprise -- that this Thanksgiving Day, when I was prepared to use two techniques Ron Lemire taught me earlier this week (He arrived right after the enema attempt) to stimulate evacuation NATURALLY, Francis announced preemptively this morning that "it" had happened at 5:00 am!

A Digression on inducing peristalsis:
One technique is acupressure applied in a pulsating way at a specific point at the base of the index finger. The second is giving gentle external massage to the colon itself, beginning with the ascending colon, moving across the transverse colon, and down along the descending colon that ends in the rectum and anus. Before trying it out on Francis I knew just the book to review: Body Stories A Guide to Experiential Anatomy by Andrea Olsen and Caryn McHose.

I can't resist sharing this gem I found before putting the book down: "This book is dedicated to Alison who reminded me that the function of a book about anatomy is not to demystify the body -- it is to help embody the mystery." I really really like that quote! It hints at what I've discovered is a profound spirituality.

My fourth and last surprising reason for thanks giving, and the deepest one, is rather personal. As those of you who know me well have surely observed, -- in areas that interest or compel me I'm a person who likes to go into detail. I like to do important things thoroughly and well. That trait has its advantages. But it also has disadvantages: I can get too meticulous for my own good. Lucky for me Francis has learned to live with me, all these 37 years, appreciating the advantages I bring to our relationship.

But on Tuesday, on top of mounting fatigue from lack of regular sleep, there were extra snafus to deal with, like Francis' PCA ringing a loud alarm every two minutes. So while he pressed the stop button each time, I was calling for a VNA nurse to come to our home. The message flashing on the screen read "High Pressure." It was easy to see why: there was blood in the tubing of his subcutaneous infusion pump. The whole episode took over two hours to clear up because the nurse got lost en route here, and then needed help herself to insert new tubing before she changed the needle. Apparently the nurse who had changed the needle earlier in the day had hit a small vein or capillary....It was all, well, -- very tiring.

In any case, later on -- or was it the next day? -- as I lay on our own bed, with Francis in his hospital bed only 13' away, I was talking nonstop, he told me later. I was sharing ideas I had gleaned how to help him. That's when I heard him say two words I never heard him use with me in all these 37 years: "Shut up! Give us both a break!"

Of course I was surprised, very surprised, even initially stunned. But I knew immediately there was no anger in it. And he was right! So I shut up, and increasingly realized this was exactly what I needed to hear: I very much needed to stop and just let go. So without another word I let go gratefully, and it did me a world of good! I remembered my mantra. I remembered to practice "savasana," the yoga posture "corpse pose," -- which is a total surrender. This little beneficial wake-up slap is a reminder I won't forget. We laughed about it today. Francis is good for me. And I know I'm good for him too. What reason to give thanks!


Sunday, November 22, 2009


Dear Family and Friends,

"Alhamdullilah!" is Arabic for -- "Praise the Lord!" It's also one of the Dances of Universal Peace chant/dances which Francis has loved from the beginning. In fact we often use it as a grace for meals.

If you saw the film, "the English Patient" you may remember the scene when an Arab who's trapped in his car buried in a sandstorm, cries out as he's dug out -- "Alhamdullah!"

It's fitting for us to use this cry of praise for two reasons.
First, if you remember, I mentioned a special event scheduled at Portland Yoga Studio yesterday: Halima and Abraham Sussman of Cambridge MA who were originally scheduled to lead an annual participatory Dances of Universal Peace retreat in Portland, led instead -- a benefit to help defray our expenses, -- "Community & Healing, an afternoon of renewal, generosity and healing."

Much as he would have liked to go, Francis was nowhere able, physically. Even for me, participating for about an hour was challenging enough. But the joy of it supported me. And it supported Francis when our Sufi leader friends came to visit him afterwards. So, -- "Alhamdullilah for that grace-filled community & healing gathering of 40 people!"

After a very rough week of Francis' seeming non-stop spitting of backed up gastric juices, I found it hard to see him bent over his "spitoon" looking gaunt, and rarely smiling. But the scopolamine patch Dr. Inhorn prescribed which dries up those juices really works! In contrast to the 5 oz of gastric juices I kept track of yesterday, there was only 1/2 of an oz tonight! And what a difference in his manner and appearance! He looked like himself today!

Of course the "dizziness" side effect scared us. This morning, while I was in the kitchen, I heard a thump and yelled "What happened?!" In an attempt to stand up (something he's been able to do easily,) he fell from his chair onto the rug but luckily the hassock used to elevate his legs cushioned the fall.

Then when Scott the PT from VNA came, Francis was unable to get out of his chair to walk. Same thing happened later in the day. Then, when I asked him only to stand while hanging onto his walker while I sprayed fluid on his TENS unit electrodes, he was so dizzy he had to quickly sit down to prevent a fall!

So I called the doctor-on-call but we immediately decided on our own to remove the patch. Good thing, because no response came from the doctor on call! But it was obviously a good move since after another nap, Francis awoke feeling even better -- AND, able to stand up!

That's when together we spontaneously started chanting -- "Alhamdullilah!"


PS The doctor called this morning and apologized for forgetting to call back! AND he offered to send a prescription to the pharmacy that's more short term to replace the more long term scopolamine IF the gastric juice "bolix"ing up happens again. He's such a good doctor!

Thursday, November 19, 2009

Report from visit with oncologist

Dear Family and Friends,

Our visit with Dr. Inhorn today was very productive. He believes Francis' need in the last four days or so to spit gelatinous mucous almost constantly when he's up, is due to a backup of gastric juices and being all plugged up.

We learned that even though very little food is taken in, the body produce a lot of gastric juices. So Francis does indeed need help to overcome constipation, no matter how little he eats. And once that's taken care of, he's likely to eat more!

So we need to "push fluids," -- and, because he was restricted on fluids in the past (to keep the sodium up,) Dr. Inhorn prescribed a medication to keep the sodium up, -- so those fluids can flow. And there was another prescription too, -- etc. etc.

The benefits of radiation are expected to materialize in good time. There's no talk of chemotherapy. Not only are the risks too high "for an octogenarian, even one in good shape," Dr. Inhorn said with a smile, -- chemo for osteosarcoma is not likely to work anyway.

So the plan is to free Francis from unpleasant symptoms. "We're comfortable with that," Francis adds. I am too. Our prayer is for him to be pain free without lots of meds, and to regain normal body functions.

Then our hope for a long life for him (Remember his aunt Irene who died 2 months short of 105) -- depends on healing from lifestyle choices, and love and light, and prayer and joy in community. And taking action in this world as his strength allows.

Elaine, -- so happy to see Francis at my side looking much better tonight!

PS I know it's late, but he had a nap this evening.

Wednesday, November 18, 2009

Challenges not over

Dear Family and Friends,

It's been hard going lately. I've been worrying a lot about Francis' very small intake of food. AND because of that I've been very uncertain about giving him help to evacuate. Even nurse friends thought I shouldn't since there's not much bulk there.

So after 5 days like this, because he looked so sick last night, I called the VNA. I thought he looked dehydrated, and with verbal suggestions what to do, he got over that hump. Then today a VNA came and took blood for several tests one of which is sodium. Is it low again? (Some cancers cause low sodium.)

There's also been this mysterious "spitting" which has increased. Not from lungs either. Is it because of damage to his intestines which "were in the way" of the radiation? Is it part of the process where his innards are healing just as the burn on his back is healing? How come he seemed able to eat more easily while in the hospital? Was it because he was much more drugged there?

In any case Dr. Inhorn will have test results when we see him in his office tomorrow. We'll be able to probe these mysteries with him.

We're both relieved right now since his own body expelled all this build- up after 6+ days! Both ends. Bile too. Twice. But the spitting hasn't stopped.

In spite of all this, even last night, Francis expressed an interest in showing up briefly at the Community and Healing gathering at Portland Yoga Studio on Saturday from 1 - 5. We're hoping, with the help of an almost lifelong friend, Joe Brannigan, he'll be able to climb the stairs to the Studio. It was his idea to use a portable fold up stool to sit on for a rest at each of the two landings. But, he adds: "All this depends on how I feel on Saturday."

With his insides beginning to clear up, test results and remedies tomorrow, and some PT, -- we're hoping he can!

On the pain front, the TENS Unit is helping! Scott, his PT said Francis shouldn't hesitate to increase the degree of stimulation because higher produces better results. As the TENS triggers the brain to produce endorphins -- his own body's natural pain relievers, -- it apparently produces no known side effects either.

All in all it's helpful to look ahead, as our out-of-state doctor/friend advised. And he added: "Getting through radiation is a major feat. You've gotta hand it to him -- to be going through this for so long!"

Thank you all for your prayer & good vibes. And, as several of our Quaker Friends put it, -- keeping Francis and me in the light! Yes, thank you Cush, -- "Lots and lots of light."


Sunday, November 15, 2009

Dancing with Irregularity

Dear Family and Friends,

Because I let Francis sleep until he naturally awakens, we're dancing with irregularity. After a 10 minute post-breakfast walk outside in the sun this morning, he slept for 2 1/2 hours. He slept that long again this afternoon after losing his lunch. But I did awaken him this evening when it got almost too late for supper. Food matters too.

The irregularity affects me too since, e.g. a mid-evening nap just a while ago, when Francis napped too, means I'm wider awake when I should be winding down. But no matter! His healing sleep is the important thing.

Now here's one advantage of taking rehab at HOME: he can sleep all he wants whenever he wants! As our good friend Lucy wrote last week: "Everything everyone has said about rehab is true, on both sides! Which makes decisions so difficult to make. I'm remembering Jill Bolte Taylor's comment in her book My Stroke of Insight, that she may have never recovered if she had been in rehab because of the fixed/rigid schedule, and that when she needed to sleep, she really needed to sleep."

Francis is STILL dealing with the side effects of his two narcotics (the pain patch and the PCA - subcutaneous infusion.) So, eager to utilize the non-drug approach to pain control which Dr. Blazier ordered, when Francis' TENS Unit arrived in the mail yesterday, I called VNA to see if their PT could come set it up for him. (TENS is an acronym for "Transcutaneous electrical nerve stimulation...defined by the American Physical Therapy Association as application of electrical current through the skin for pain control.")

He likes it. The electrodes sit in four movable pads velcroed to a wide waistband circling his lower waist, and holding them snugly against his skin. He likes their warmth and the tingling which distracts the brain from pain. If this works well enough, and as the benefits of radiation "kick in" more and more, we hope he'll need to press the "DOSE" button less and less. By the way, you should have seen the ease with which he rose from his chair so Amy, the PT, could put the TENS on his back!

If what three knowledgeable people told us is true, -- that about a week and a half after radiation ends, patients begin to feel much better, Francis may be able to join me in dropping by briefly at Portland Yoga Studio next Saturday for the 1 - 5 pm "Community and Healing" afternoon benefit. He wants to! With all the deep deep sleep he needs right now, it's hard to believe he'll rally that quickly. But, he reveled in going out for acupuncture yesterday! "Fern" said his color was better and his pulse was good!! Thin or not, looking like a star dressed with his Greek hat and London fog raincoat, his PCA slung in a case over his shoulder, he exclaimed, -- "It's good to do normal things!"


PS Thank you all again and again dear friends for your continued loving support of all kinds! It's difficult for me to be forced to express gratitude in this general way, or just with an email, when I would like to send individual cards of gratitude!

Thursday, November 12, 2009

Birth Pangs and Adventure

Dear Family and Friends,

Francis and I were up the last two nights dealing with his recent healthy return of bowel normalcy (Yeah!) and last night with his nausea (Yes, again!) and efforts to keep his blood sugar up without solids.

But when I saw that the lights were on two houses down where Chris and Chris Downy's first baby was born last Saturday, it seemed to me both households were dealing with new birth. Just as they were losing sleep introducing Ruby into this life, so were we with Francis' regenerating body functions.

His energy was so strong the morning after his return from the hospital, it seemed to us as he sat in the kitchen for breakfast for the first time since we knew cancer had struck, that the last two months had been a dream. Perhaps that's why after three good normal meals for Tues' supper, Wed's breakfast and lunch, he might have been caught off guard. He might have acted too normal forgetting he needed to eat small amounts with lots of pauses during meals.

I deduced after he lost his supper that his intestinal flora are likely in need of repair. So we pulled out the bottle of dairy-less probiotics Jan brought. But the nausea episode set him back today when he took solids again only for supper.

But, just in time, Francis' consult with a macrobiotic counselor which had to be postponed because of his hospitalization, finally took place today. Connie Arnold who lives and teaches macrobiotic cooking classes in southern Maine, cured herself of non-hodgkins lymphona without radiation or chemo, six years ago. Armed with a detailed questionnaire Francis had filled ahead of time, and an examination of his body, -- a very interesting development here! -- (Connie studied at the Kushi Institute in Boston,) she made specific recommendations for his healing diet.

I was pleased to hear Francis say after supper that he's ready "to take what we can do." The detail of it seems overwhelming. Connie expected that. So her last bit of advice was freeing: "KISS." I thought she meant I should kiss Francis often -- (which I do anyway! ;o) But no, -- "Keep it simple sweetheart." Yes, we'll do just that.

When Dr. Inhorn called during our visit I told him what was going on. His reply? -- that Francis should find his food ENJOYABLE. Interestingly, Dr. Fern Tsao, the Chinese acupuncturist he'll see again on Saturday, said much the same thing, because Francis needs to be built up. Connie said the same thing too. Enjoyment of his food is advice with which we totally agree.

In any case, after carefully studying the material Connie left us, which includes more than recipes, and after getting "Fern's" (as she likes to be called) okay that Francis is ready to start, we'll gradually embark on a healing adventure for him. In some ways it's not very different from what we already eat. In years past when we went for yoga workshops in Cambridge, we enjoyed many meals at Masao's special (and popular) macrobiotic restaurant.

Nothing will actually change in our lotsahelpinghands approach
only a little re-wording and more flexibility. Stephanie will change the calendar titles to reflect changing circumstandes. For example, without weekday radiation appointments to go to, morning or "AM Volunteers" may arrive for a few hours anytime between 8:00 and 10:00 am. And late afternoon or "PM Volunteers" may arrive anytime after 4:00 pm. In both cases we'll gratefully receive help for whatever needs to be done, -- picking up items en route to our home, doing dishes, laundry, chores, maybe helping prepare special meals for Francis, or freeing me to rest or do yoga or -- "Whatever!" ;o)

Some of the healing remedies prescribed by the macrobiotic way will take up more of my time, not less. But the meals you bring (but mainly for me now,) will continue to free me to help Francis.

If any of you are interested in helping me do this, just let me know. I know some of you have experience I don't yet have on this front, though I'm eager to learn, and we have Connie's guidance to go by. I see it all as Francis does, as an adventure in healing. It's not a life-long rigid regimen. In fact Connie pointed out that for healthy people some food she recommends that he avoid -- in order to alkalize his body -- would be just fine for him later. But for now we're ready for this.


Tuesday, November 10, 2009

So much joy and gratitude

Dear Family and Friends,

I can't do justice to the depth of joy and happiness Francis and I feel coming home buoyed up by the loving support of such good friends! All of it is so deeply appreciated: the new egg crate mattress Anne left for Francis, Susannah's and Nicki's assisting him up the incline where he slowly climbed the five stairs to our side door, Nicki's cooking supper for us and both of them helping us further understand how to work his new "Sub-Cu Infusion" PCA machine to which he's tethered. He needs assistance carrying it around since to him right now "It's like weight lifting!" But I'm eager and ready for sheer joy it's working for him!

Thank you for sharing your own joy in ours! Some of you are quite eloquent! I wish I had time to quote your insightful, even exhuberant comments! -- but I must finish putting things away so we're organized for tomorrow. The VNA nurse is coming, and what a relief not to have to hurry out to a radiation treatment! We expect follow-up appointments with both Francis' radiology oncologist and his medical oncologist Dr. Inhorn. Then there's an acupuncture appointment coming up, and several other alternative therapies in the wings.

I firmly believe the love and prayers and good vibes and healing energy we're both receiving will melt whatever is left of Francis' cancer which Dr. Villiotte admitted the radiation cannot completely "get."

As one friend put it so well: "For now, you both have worked with the many miracles that medicine has to offer and can “come home” to deep healing which love and beauty can provide."


Monday, November 9, 2009

"Going home IS rehab!"

Dear Family and Friends,

Very briefly, because I'm going right to bed in order to be at the hospital early again in the morning.

Our meeting with Dr. Blazier, the head Anesthesiologist we've been waiting for, couldn't have gone better. He looked surprised when he saw Francis and told him he was "pleased how well you look!" He had expected him to be "slugging along."

We talked technical stuff about the PCA and the fentanyl patch, AND, briefly about the "TENS unit" Francis will also be getting for pain control.

His best line came just as he left when I told him that some people thought Francis might want to go to a rehab facility. I was alluding specifically to Francis own primary care doctor who said this morning that since Francis MIGHT want to go for a week of rehab since he is now at the end of radiation (1 more tomorrow) -- and here Dr. Katz traced in the air the bottom of a hill which Francis is about to climb out of and up to the other hill, where, he said, he'd feel much much better in a week to a week and a half.

But Dr. Blazier said: "Going home IS rehab! Go home and do some things!" he added. That did it for Francis! He had felt a bit fearful earlier in the morning, -- afraid of burdening me, -- but we had cleared up those fears with my assuring him I wouldn't be alone. There'll be VNA services, and "lotsahelpinghands!"

So now he's clear he wants to come home "and do some things!" Barring some unusual development, -- it'll happen tomorrow or Wednesday.


Sunday, November 8, 2009

Francis' senior nurse weighs in

Dear Family and Friends,

First of all, -- Francis has been making great progress since midweek when his erratic blood pressure and great weakness alarmed me! He literally stayed up all day today, dozing periodically in his chair when he wasn't reading the Boston Globe. He'd alternate with one, then two legs resting on a chair, a perfect position to strengthen his front thigh muscles when he activated them, or to lengthen his rear leg muscles when he relaxed.

Not only that -- but twice today, with the help of a walker, and free from his PCA, he walked on his own (with a nurse nearby) the whole length of the hall past the doors that lead into the doctors' offices area and back. That's the first thing he told me when I returned from Lynn's birthday celebration lunch with Lee and Rowan. And he wanted to do it again with me tagging along, -- right then and there when I arrived! Blood pressure was normal again today too!

It's interesting that in spite of this progress, after I read Francis a few more of your emails on rehab facilities, we were actually leaning toward his going for rehab, -- because your positive experiences of rehab were so convincing: "regularity and discipline" of daily PT sessions... "probably more consistent than he would have at home..."

But Susan, the experienced nurse who set up Francis on the PCA (patient controlled analgesia) last Wednesday, gave us an earfull tonight, and I took down every word: "Honestly, I really don't think you need rehab! You have no skilled nursing needs other than pain services. And those could be taken care of with VNA services once the Anesthesiologists figure out the dosage of pain meds you need, (judging from Francis' recent "patient controlled" input.)

She added: "You just need a little strengthening." She explained that if Francis had a fractured hip and needed assistance, or needed to be taught to walk again, it would be different. "But you can get up!" (Yes, indeed, since Francis has been doing the PT Linda and I showed him, he can! Even from his low chair too!) Susan also said the rehab he'd get at the rehab would not be superior to what I can provide at home in addition to VNA's PT sessions 3 x a week.

Even on the subject of his blood pressure she said "If at home your blood pressure should go low again, (You can use an automatic cuff at home) you can just sit at there at the side of your bed before getting up. That's all we do here to help you." All in all she concluded, "You'd do better at home -- for the food and the rest." (I had forgotten about the rest! There's better rest at home too!)

Obviously we're both won over by Susan's informed opinion. Her assessment comes from in the moment, close-up observation of Francis' progress.

So the one piece missing now is the Anesthesiologist's plan of action. I'm leaving the house at 7:30 am tomorrow morning to be in Francis' room at 8:00. Susan coached me to be assertive with the Anesthesiologist. She told me to have him paged and to tell him, that:
1) Francis should be discharged after his last radiation treatment on Tuesday morning, but that
2) after 5 days of Francis' using the IV- PCA "we still don't know the plan for his subcutaneous PCA" so he can be discharged!!!
3) We expected it would be figured out earlier! So,
4) Could it be figured out asap so that he can be discharged in time? Or
5) if not Tuesday, -- when?

Time for yoga practice now, and to bed for early rising!


Saturday, November 7, 2009

Encouraged on both fronts

Dear Family and Friends:

Since I've had no experience with rehab facilities at nursing homes (Each of my parents died at Mercy Hospital after a one week stay,) I needed to be straightened out on that front. And thanks to four of you, I now see more than the negative aspects of rehab/nursing homes on which I was fixated -- institutional food (Much of it is processed, and therefore stripped of its nutrients.) and the danger of infection.

But as Mike said, there's another side:
"I cannot say enough good things about the rehab tours. The staff in every location pushed the patient to their limit and beyond if they felt that good progress could be made and the patient discharged to home. There were regular assessments with family regarding the progress and discharge plans for the patient.

I know you want Francis home. I know you WANT to care for him at home. This is an act of pure love. I suspect Francis wants to be home too. A rehab wing is NOT giving up on Francis coming home but giving Francis the concentrated care in one location, probably more consistent than he would get at home with visiting PT."

So when I went to the hospital today I asked to speak to the discharge planner. Since the person on duty yesterday said nothing about a location I gave her the names of two places Mike recommended.
It's a matter of getting a place ahead of time IN CASE. People cancel at the last minute all the time, I learned.

Francis looked so pale and thin as he slept in early afternoon after barely eating lunch because of a bit of nausea, -- I thought to myself walking to the car for... believe it or not -- a really refreshing 1 hour nap, that for sure he'd need to go for rehab.

But he awoke refreshed around 4:30 and had not only good color again but a very good appetite! To top it off, after his after supper snack on popcorn I learned from his nurse that his blood pressure was much better today -- almost normal! AND, he was eager to do some PT. I wrote out a plan for him -- simple things to do while sitting, standing and even reclining. A very important one is strengthening the buttock muscles.

I learned something from Linda the PT person yesterday that I never heard quite this way before, -- that the front thigh (quad) muscles are important, yes, but strong buttock muscles are even more key in standing erect when rising from a chair. Reflecting on this I deduced that good buttock strength could also prevent bowel mishaps while urinating.

Francis was very quick to learn how to contract his buttocks -- very weakly at first, but each repetition showed an improvement. One thing teaching yoga showed me is that strength can be built up pretty quickly, unlike releasing long held contracted muscles; that takes long practice. There's another exercise that Dr. Jim Melloh suggested that strengthens the same: bending forward at the hip while holding on to stable structures and lifting one leg up from behind, leading with the heel. That's very much like a yoga posture Francis has done many times, -- Warrior III (Virabhadrasana III for the yoga practitioners.)

So I'm encouraged by Francis' eagerness to get strong and the fact that his past yoga practice is still there in his body. Yesterday he readily did another pose Linda showed him while sitting, because there's memory of it in him.

At the end of our phone conversation on Friday, when Jane and I were going back on forth about options she put it in a nutshell: "The important thing is to have an open mind." Thanks to you who opened my eyes, my mind will now be more open when Francis and I have to make the decision, with the doctors' input, early next week. Even though I'd prefer his coming home (and the diet is a big part of it,) I'm at ease now about either option.

My deep gratitude to all of you for help of all kind. And this one -- enlightening a friend -- is not the least of it!


Friday, November 6, 2009

Maybe home, maybe rehab facility

Dear Family and Friends,

By now it seems clear that Francis will be discharged from the hospital next Tuesday after his last radiation appointment. But it's not clear yet where he'll go -- home (our big preference) or the rehab wing of a nursing home.

My last cherry note yesterday was written in the afternoon, before I saw Francis. After observing his great difficulty standing up from his chair, even with help, I came home worried about his weakness. So this morning I wrote a note to a handful of close friends some of whom are doctors.

One of them, Dr. Jim Melloh, the family practice doctor from Lewiston (who taught geriatrics) and who has visited Francis several times, wrote: "Your thought that blood pressure drops are related to deconditioning are probably on target. For every day in bed, we go 3 days backward in terms of time it takes to recover that strength. Plus with his nutritional intake Francis has lost much muscle mass which will take time and conscious effort to recover. Unfortunately, in the hospital he goes backwards daily. It is one of the greatest shortcomings of our hospital system. We need to be actively rehabing him......"

So that's why I went to the hospital right after lunch today, -- to give Dr. Katz a copy of Dr. Melloh's detailed note, and to get Francis started on strengthening exercises. Linda his hospital PT came just in time to share some excellent techniques I might not have thought about.

The other big item on the agenda was making plans for Francis' hospital discharge. It took a lot of back and forth phone calls to iron out details, e.g. the hospital's PCA (patient control analgesic) machine is in IV form, but Francis' "fanny pack" would be subcutaneous. AND, in Maine, that switch cannot be made before he leaves the hospital, but only when or after he leaves!

I felt discouraged when I left the hospital, specifically because his erratic blood pressure problem hasn't been resolved. The awful burn -- (I'm glad he can't see it -- ) a big circle on his back where the radiation exits.... is so disheartening! It's almost worse looking than the front where it enters.)

His nurse also said she thought he should go to rehab because of his high pain med doses. But later when there was "a little accident" she whispered to me that THAT was really why she had recommended a nursing home. "Some people don't want to do this work," she said as she handed me some rubber gloves. I immediately told this to Francis and added, out loud, that I WANT to take care of Francis!

In any case, when I left the hospital I felt our sweet dear man was fighting for his life. At one point during all the back and forth Francis looked at me and said, -- "We don't know what will happen." He's right. But I also reminded him that my mother in her early 80's, also debilitated by a stay in the hospital, came home and regained her strength! So I told Francis he could do that too! But I was very sad, wondering if he'll ever come home again.

I shed tears talking with Eileen who had come earlier to bring dinner, and with Lori who will take care of the chickens in the next two days. Nance will check them after school on Monday since Lori works -- because I plan to spend much of the next three days IN the hospital with Francis doing some PT, trimming his beard and nails, giving him a foot massage, doing some more PT, and going to Portland Yoga Studio for a nap or two during the day. (It's an 8 minute walk from the hospital.) Francis and I are both determined to build up his strength so that by Tuesday he'll be stronger and ready for anything, -- hopefully, home!

So I was sad. But the reason I'm smiling now is that Francis called me about an hour ago to tell me he had had a NORMAL very good looking you know what!! So that little "accident" was not a sign something weird was going wrong when both ends were working at the same time!! It was a sign that the popcorn and the rice pecan bread was doing its fibrous thing! When enemas begin to seem a way of life, signs of normality returning are, as I said in another update, cause celebre!

Pray for home!


Thursday, November 5, 2009

With PCA -- Aiming for Home

Dear Family and Friends,

Since 4 pm yesterday Francis has been given a job -- to press a button every time he's in pain. The PCA (patient control analgesic) machine he's connected to then delivers a small amount of dilaudid, a derivative of morphine. It's the same med he hasn't been able to tolerate by mouth because of upset stomach and nausea, likely caused by radiation.

He can't get too much dilaudid because there's a "lockout" mechanism enforcing a 10 minute wait after each press of the button. After this 24 hour monitoring he'll be set up with -- not a live IV like the PCA he's linked to now, -- but a subcutaneous pump which works like the insulin pump, delivering meds through the fatty tissue. That means, soon, I fully expect, -- he'll come home!

I'm relieved the meds depends on him and not on the nurses whose approaches differ. One night earlier this week his night nurse told Francis she was going to give him the higher total dose allowed at bedtime because it would give him a better night's sleep. I felt uneasy about it remembering one doctor friend's and other nurses' too saying patients might not need as much at bedtime. (In fact, it could be dangerous.) But it happened so fast I didn't have a chance to object.

The next morning when Francis rose to get ready for radiation, his blood pressure plummeted (a side effect of dilaudid.) They told me there was a scuffle trying to get his BP back up. Lynn walked in in the middle of it and called to tell me he looked awful. As a result they cut out one of his old, regular pills. Francis joked later the nurses said he had a bluish nose. But it's no joke to me: Now he's been told he can't go for walks unassisted.

After I put 2 + 2 together I asked his doctor about it this morning. He told me he wouldn't have given him that much, but that they "can't micromanage" the nurses; they're given "a certain flexibility." I can understand that need, e.g. A patient given a lower dose might need more later. But this seemed a pre-emptive dose to me.

I'm going to the hospital earlier today to be there when the 24 hour monitoring is up. It's gratifying to see Francis' appetite returning, -- "the best yet today," he told me this morning! And when he's home we'll get working on that daily 1 and 1/2 hours of "rehab" he would have gotten at a nursing home. It was never a question of Francis' really needing a nursing home. I learned that skilled nursing homes have separate wings for short term rehab. Scott LeClair, Francis' PT from VNA, assured me he can come 2 - 3 times a week and show me what should be done the other days.

With only three radiation treatments left, that's the next phase, -- rehab, detox and build-up. As a real "morning person" now, (I get sleepy by 10 pm,) I'm ready! I know I'll need your help. During this interim period of recharging, visiting Francis in the hospital, advocating and cooking to bring him a variety of treats, including daily eggs and popcorn, and greens at times, it's been a god-send to pull out those meal brigade portions I froze!

Thank you all, gracious, generous friends,


Tuesday, November 3, 2009

I'm voting for the home option!

Dear Family and Friends,

Here's the short version:
Francis MAY stay at Mercy Hospital until his radiation treatments are completed - last one Tues Nov 10 -- OR he may come home with the option of getting his meds via a fanny pack -- a subcutaneous approach which is easier to maintain than a "live IV" with a "morphine pump" approach.

I'm voting for the home option because:

1) he'll get much better quality food at home (Did you ever buy organic wild caught salmon?) and 2) staying in the hospital holds a risk of infection.

Lastly, because of the good support system in place now, even though a subcutaneous ...(Is it called "pump?)... raises Francis' return home to "another level of home care," I believe we can do it.

And I'm fresh for this second round too, as I promised! As one friend said, -- there's nothing like motivation to do the impossible. I've become a morning person again, with the energy of 8 hours of sleep behind me to face the day. (After all, I used to have to arrive at Thornton Academy in Saco -- a 30 min drive -- by 7:30 am in the 70's and early 80's! So I'm doing it again.) I can't bear the idea of Francis worrying about me! So I've caught up with my sleep now and am into a new rhythm where thankfully my sitting practice is back on track.

Here are more details:

Even though his own doctor believed Francis should stay in the hospital until he's ready to leave, yesterday there were signs that insurance company rules were nudging him out. The social worker called about "the option" of sending Francis to a nursing home for rehab.

So I consulted with Jane McGillicuddy (at VNA) who connected me with VNA's palliative care manager. She was very encouraging. It's she who gave me the code word: PCA, -- "patient controlled analgesic," -- the fanny pack. So from then on I made several calls pushing for the home option instead of the nursing home option.

They tried oral medication for Francis last night but it failed. He told me this morning he was very "unimpressed" with the oral meds which made him vomit twice. And this morning his pain was "really really bad." The manager explained -- "If the gut is already irritated from radiation ("intestines are in the way,") it's not surprising oral meds are harder to take.

I don't want to control what is meant to be, but I'm asking for prayers that Francis' doctors will also come down on the side of the home option!!

Thank you EVERYONE for your cards and support of all kinds! Your loving kindness touches our hearts and moves us to want to respond individually, but I know you understand!