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 http://www.lotsahelpinghands.com/c/619101/
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 http://www.megwolff.com/ 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.
Monday, November 30, 2009
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: http://www.wbz.com/pages/6247.php
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.
Elaine
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!
(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: http://www.wbz.com/pages/6247.php
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.
Elaine
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!
Elaine
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!
Elaine
Sunday, November 22, 2009
Alhamdullilah!
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!"
Elaine
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!
"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!"
Elaine
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.
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."
Elaine
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."
Elaine
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!"
Elaine
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!
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!"
Elaine
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!
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