Wednesday, September 30, 2009

Simple biopsy approach worked !

Francis underwent his second and more substantial biopsy today. Arriving at 3:00 I was there when the nurses taught student nurses how to prep a patient for biopsies. The younger and older nurses were good humored but Francis teased them right back. Finally around 6:00 pm I followed as they wheeled him down to the OR. I sat during that 2 hour period, even half reclined to take a nap, in the waiting room. Around 8:00 I saw Francis' name on the large computer screen indicating he had moved out of the OR, and that the time of the surgery itself was 18 minutes, 35 seconds.

Then Dr. Agren came out to talk with me. He reassured me, answering my first inquiry, that he was able to get enough sample tissue using the first lumbar fracture alone as entry point. Good news that he was able to avoid cutting up Francis more than a tiny 1/4 inch incision on his back! In fact the nurse who wheeled him out joked that the incision was so small he could wear men's bikinis.

When Dr. Agren said "There's definitely something there," I didn't ask what he meant. But when he added we could finally have a treatment plan now, I mentioned that Francis might choose to opt out of chemo and radiation. His facial expression told me he wasn't going to tell Francis what they, the doctors, would do. Without our saying so explicitly, I could see he readily agreed that it's Francis who will choose among the options. He's a good, caring doctor!

When Francis was wheeled back to his room I was happy to see he was conscious and smiling. He said he didn't know he had a smile, to which I answered it was a kind of Buddha-like smile. Before leaving the hospital at 9:30 I helped his nurse take care of Francis' needs.

Will he be able to come home now that the biopsy is done? Not sure. The pain patch's effectiveness is still being worked out, and his sodium level, left on its own, went down again to 123. So we'll see. Yet no matter what, Francis' good humor and patience sustain him. And me also, to see him so.

Posting Problem
More than one of you said you tried to post on the blogspot but couldn't. (You'd have to open an account with google for that.)
So after her brother's wedding this weekend, Susannah (who set up this blogspot) will set us up with where anyone CAN make comments with no strings attached.

In the meantime Susannah will be continue posting my updates on this blogspot. And you'll get instructions when it's time to make the switch.

I found a third egg today
Francis ate the first one, I'm letting the second one harden (takes a month or two) to give to Rowan. And I ate the third pullet sized egg tonight. Francis was correct, -- tasty and fresh, -- unbeatable!
Ever grateful,

Tuesday, September 29, 2009

Apprehension and Joy

Dear Family and Friends,

Though a different chicken laid a small, perfect firmly shaped egg on this lovely day, I feel some apprehension tonight. I pray the second biopsy Dr. Agren will perform tomorrow afternoon to get a bigger sample can be gotten with the simpler rather than the more intrusive approach.

My apprehension comes also from Dr. Agren's mentioning radiation, if the nature of the tissue warrants it. We've heard the term bandied about. In general it sounds less bad than "chemo" which Francis is inclined to refuse.

But a knowledgeable person told us tonight that radiation can be destructive to the spine, and to the aorta etc. etc.! He also said in future it will be avoided as "primitive." He suggested asking the surgeon -- "Are you quite sure radiation will result in less pressure on the nerves and so reduce my pain? He said he'd refuse if the surgeon can't express that kind of clarity.

His last word of advice was -- to take one step at a time. I need to hear that. But when the results of the biopsy come in -- maybe Friday -- Francis may have that decision to make. Tonight he looked to me for his decision refusing the kyphoplasty tomorrow. So I'd be interested in any relevant experience or reliable information some of you may have on the subject of radiation.

Using the blogspot instead of email will allow me to see responses at a glance instead of having to go through individual emails each of which has to be clicked open, -- even just to read them. Just go to Of course that doesn't mean I don't want emails! And if you have a hard time posting a comment, go ahead and send it by email.

But Susannah Sanfilippo who set up the blog and posted everything so far (but I'll take over soon) may give simple directions how to go about it. Probably: Click "Comment" and go on from there. You may have to register. Even I got it after some fumbling when I made three postings on a good friend's blogspot before she died. Go see it now if you're interested:

Witty email from witty friend

Dear Francis,
From latest reports, chickens (or, if you want to be technical, eggs, double-yolk ones) have come to roost at your room at Mercy Hospital. In common with your made-in-heaven partnership with Elaine, I never once felt hen-pecked in all the years with my dear Mimi. True, once in a while, I might chicken out and let her have her way.
To the point: I understood Elaine to say no visiting for now. Yet her last e-mail suggests otherwise. I'm not one to brood over such things, to suggest fowl play, or to say a plot was being hatched. Still, it sounds like you had a flock of visitors. And, if egged-on, Elaine should know I have a long memory. And, when you next see her, tell her that I don't consider this a yolk.
John Wirtz

First the Facts

Dear Family and Friends,
First the facts: Dr. Inhorn said Francis' biopsy report brought in a "non-diagnostic result." In other words, though there's no visible cancer, there's "no progress" in discovering the root of the problem. He added that there's "inflammation" where the needle was inserted,
When I asked him if he still thought it could be "small cell cancer," he said "that's a good educated guess" because this type of cancer can cause of a lot of inflammation, and can originate in unusual places though he admitted as Doctor Anne Lemire told me after mass on Sunday, it's considered a lung cancer. (Yet there's no sign of this on the CAT Scan.)
Dr. Inhorn said they'll need another, bigger, biopsy with more tissue. Also, -- that there's "inflammation" where the needle was inserted,
So he asked Dr. Agren to review the X-rays to see what he thinks about a different procedure to get a bigger piece of tissue. And Dr. Inhorn will speak with me on the phone tomorrow morning at 8:00. So I'm determined to get off to bed!
Francis' spirit continues to be at ease, sweet, and attentive to those around him (though he needs frequent naps) in spite of the fact that sitting up straight causes him pain even with the IV meds. That means for comfort's sake he must lower his hospital bed back into a sort of reclined position. Since it's hard to eat that way, I feed him supper, and floss his teeth before I leave. It's a touching tender exchange I'll never forget. Yet he walked on his own today with a PT nearby, to and from the nurse's station.
He hasn't lost his sense of humor either, enjoying articles in the Sunday New York Times which Lynn and Lee (our godchild Rowan's mom and dad) brought him yesterday during a delightful visit. Though we haven't officially adopted Lynn, she is true daughter to us. Though we haven't officially adopted Lee, he is true son-in-law to us. Our relationship with Lynn goes way back. She helped us pack up my mother's things when maman died in 2000. And since Rowan was 17 months old (She's 5 1/2 now) we've been babysitting her weekly and often sharing that regular supper with Lynn too. Lee joins us in the summer and holidays, since he's a professor at Rutgers University who has to commute home for weekends.
During this challenging time we give thanks for the close family we have in Lynn, Lee and Rowan, and in you McGillicuddys and Remys (George my cousin, his wife Heidi and their son Charlie,) our local relatives on my side, and Pat Demers my cousin in Acton whose mother Aunt Isabel is my mother's last sibling.
Examples multiply of the loving concern of neighbors and friends. I found a casserole in our fridge on Saturday; someone had slipped in while I was taking a nap. My cousin George arranged to pick up our car to bring it to the body shop today from which tomorrow a neighbor will drive me there to pick it up. Another couple will come Thursday (Joe can do top notch electrical work) to fix a light in the closet. Yet another neighbor brought my watch to Days to get a new battery, and picked up a 50 lb bag of organic chicken feed for pullets! (They've graduated to the egg laying ration now!) These are not the only examples.
One of them is Susannah Sanfilippo who just created a blog to facilitate communicating news of Francis' journey and mine. I realized forcibly today we're not alone on this journey. All of us are caught up together in the big event of life's flow. Your love has drawn you into our piece of it.
I know that some people would prefer getting updates on email, so I will continue doing that with my already existing email lists. But Susannah will post them (as she did the past ones.) The advantage of the blog is that it'll include photos and will allow you to pot messages too I believe. But it will also make it easier to share. As the circle of concern widens, I have less time and energy to respond to most individual emails. Since I am now beginning to take over Francis' tasks -- paying the bills, etc. etc. including making the first part of our no-bake cookie recipe, I must use my time more wisely than ever.
One last thing about my precious visit with Francis this evening from 5 - 8: I fried one of our pullet's first eggs -- Hey, -- and it had two yokes! -- and brought it to him in the hospital. He said it was the tastiest egg he'd ever eaten! I told him not to share a bite with me. It was all for him!
When it's ready, -- probably tomorrow, (and remember photos will be coming), you can check it out at Not right now, -- but soon.
(What a beautiful word meaning "grateful" in Spanish)Elaine

Monday, September 28, 2009

Big news on another front

Dear Friends,
A delightful event that cheered both Francis and me happened yesterday in the midst of a challenging day awaiting the biopsy results.

In mid-afternoon I heard a huge racket in the outside run of the chicken coop. Only 25 feet from the deck's opened screened door, I caught sight and sound of unusual display! I looked to see what the fuss was about. (Sounded as if a bobcat was threatening them.) But amazingly, -- I heard a big swoosh as they flew up to the top of the run (over 6') -- in unison!! Not only that but they kept up their LOUD ....what do you call it? It's not really clucking. Was it cackling? Singing?

Stacey Collins had told us in her excellent Backyard Hens 101 course that when they lay eggs they make a racket...yes a "racket" is what it was. So I checked the nest boxes newly lined the day before with fresh pine shavings, and guess what! There inside one of the two nest boxes was a beautiful perfectly formed egg! Not misshapen as I read it could be until they "get the hang of it," -- but perfect! Probably small to medium sized, sort of tan colored. It had to come from one of the red or black sex links hens, since two are Americaunas and will produce, we're told, colored eggs -- "Easter Egger hens." Our sweet chickies are still pullets of course, only 20 weeks old until they turn 21 weeks old on Thursday.

What happened to the egg? I called Lynn to tell Rowan who might want to come see it. But then I knew what should be done with that first egg! I fried it -- with its beautiful double yoke! -- and brought it to Francis at the hospital. He savored all of it -- the most delicious egg he ever ate!

Saturday, September 26, 2009

Update on Francis

We're glad that Francis did not get the kyphoplasty surgery on Friday because as Dr. Sheila pointed out, (and even the surgeon agreed with the oncologist on this) -- the priority is finding out the nature of what they referred to as -- the mass..or the tissues...or the cancer. When I inquired of Dr. Inhorn, the oncologist where Francis' pain comes from, he said -- "The tissues' pressure on the nerves."
Dr. Inhorn expects the biopsy results to be in by Monday. That's when we'll know more. For now, since the CAT Scan shows no obvious cancer (aside from the mass which surrounds the lumbar spine, )Dr. Inhorn thinks it's a "small cell cancer" because this "unique" cancer causes the person's sodium levels to drop. "I think that's the clue," he said. And that's why Francis is still in the hospital: His sodium was 120 Thursday night, (130 is normal.) and even though he was on an IV, it dropped one point to 119 by Friday morning. So they're now giving him a big dose of sodium which brought it up by yesterday and today -- to 127. The doctors add, -- "That's not a long term solution."
The enormity of what is happening is sinking in for me in spite of fervent hope that maybe the tissue is benign. Or even if it isn't, maybe they could get it all with surgery and then use the cement -- kyphoplasty -- to support the spine. But if surgery isn't enough, as I told Jo over the phone yesterday, Francis is inclined -- though not rigidly so, -- to opt OUT of chemotherapy. He admits we can't say ahead of time what we'll do when the time comes.
Francis remembers a friend whose doctor told him he could treat him, Tony asked: "Can you cure me doc?" " I can TREAT you," was the reply, "but I can't cure you." So Tony chose to say no to chemo. Francis remembers Tony's example with respect.
I'm happy to reassure you that Francis' spirit couldn't be better. His pain management could be better though, but we'll talk to the doctor about this. Some nurses don't feel authorized to act when they could.. And when I asked if he wanted visitors Francis said "No, My energy is depleted going from one test to another, and I need all the energy I can summons. Visiting takes energy, as beloved as the visitor is. It's tiring having to rise to the occasion." -- That's the message I'll send to our local friends when I update themafter the biopsy results.
But here's what I wanted to say about Francis' state of mind: He said to me smiling, shortly after I arrived, -- "I'm not having dire thoughts, you know! I'm having a good time. I just stay in the present moment." He added that yoga helps him. This practice of the present moment is part of yoga.
The same is true for me. The yoga posture "Savasana," ("Corpse Pose") in which one reclines and simply lets go, is my lifeline. I start out with muscles tight and tense from all I have to do. But this practice -- letting go like a sleeping child in its mother's/daddy's arms, -- imitating the non-movement of one who died, (like its name, "Savasana") is profoundly effective on all levels.
Thank you all, dear ones, for your loving support!
Francis and I feel surrounded with LOVE.
Much love and gratitude,

Thursday, September 24, 2009

Please pray for Francis

This may come as a shock for some of you who didn't know that Francis has been dealing with back pain for several months.
Dr. Mat Agren his orthopedic doctor had him admitted to Mercy Hospital a few hours ago (where I'm returning shortly.) He will be operated on tomorrow -- chirophoplastic surgery during which Dr. Agren will also take a biopsy of some sample suspicious tissue near an old lumbar fracture.
Francis is relieved he'll be able to get some pain relief since the side effects of the various meds tried on him (even ibuprofen) were not worth it.
We thank you ahead of time for your prayers for a successful surgery and also for the important follow-through dealing with, as Dr. Agren put it, "a cancer (they) don't know about."