Monday night

Okay, now maybe I'm getting paranoid. Today Dr. M's office called and again - AGAIN for the 5th time since the original appointment was scheduled in October 2010 - cancelled a scheduled appointment. I was supposed to see him at 8:00 am tomorrow. They offered 10:00 am but I had taken 1/2 day off of work and already scheduled doing something else at 10:00 am. They offered 3:00 pm but I didn't want to take the whole day off of work. Plus the last time I had an afternoon appointment scheduled with him, I was on the bus on my way to the appointment when they called to cancel the appointment so I missed an afternoon of work for no reason. When they rescheduled me the 4th time, I actually offered to BET the woman in his office that she would be calling me again, to reschedule a 5th time. I offered to buy her lunch if he didn't do so. But she didn't accept the bet.

With good reason. Apparently.

Frankly it FEELS as if they are doing this on purpose, to screw with me. I know that's not true. I certainly want a doctor that makes "emergency surgery" the priority over wellness visits, which is what I assume my visits are. But at some point, after 5 months and 5 cancellations, at some point I actually NEED to see the oncologist "in charge" of my care. They ended up rescheduling me for next Monday morning. At that appointment I am going to tell him how I am feeling. I am going to ask for another doctor in his practice to back him up if he ever cancels on me again. I am not going to go through this every 3 months for 5 years. It is too stressful. And, if he cancels the appointment on Monday, then I'm going to fire him and fine another oncologist. I respect his need to "be there" for patients when they are in emergency situations. But it looks like he doesn't have any time at all for other patients. Maybe he needs to stick to the emergencies and let someone else handle the care of patients afterwards.

I continue to be inspired by the events in the Middle East. One, two, many Egypts! And Wisconsin! As far as the U.S., I don't think we've seen anything yet, and I expect things will get worse, much worse, before people everywhere are ready to take to the streets. What the governor of Wisconsin wants to do is what the majority of people in this country apparently just voted for in the U.S. Congress. My grandmother, Mattye Nelson, used to say "Be careful what you ask for - you might just get it." Ain't that the truth!

Likewise, I guess it is being six decades old now, but I worry about what comes after the uprisings in Egypt etc. When you stir the fire, sparks fly and you can get burned. Is it a good thing, even a great thing, to see the people of Egypt and other countries rise up? It is a truly great thing. But the hard work of addressing society's problems isn't a celebration, it's hard work. I hope we human beings are up for it.

Peace.

Saturday morning

First time to the park in weeks or longer. Ella was excited and we basically had the place to ourselves. A few birds singing here and there, but no sign of the ducks, Canada geese, squirrels, rabbits, the muskrat, foxes or the La-De-Da poodle that named Sophia that sometimes lords it over lesser creatures (like me). There has been so much snow that the park benches scattered throughout the park are buried, with only the top parts of their backs sticking through the snow pack. So much snow, in fact that they have not plowed the road that goes around the western loop and no one has been brave or foolhardy enough to tramp the walking path. Untouched snow pack over there (now crusted over hard with coat of ice). The walk today made me ask myself what my walks were like there last winter with Jessie when I was going through radiation after the chemo. Clearly we didn't have anywhere near this much snow. I do recall cold days. It was good to go back and I'm looking forward to walks with Ella there in the spring.

Thanks to J for his query about my daughter's note seeking an ENT doctor for the patient in Haiti. It is possible one has been found; don't know for sure yet, I'm checking on it.

How about the Egyptian people!?! I like to think about the assorted (and sordid) variety of dime store dictators ruling in other Middle East countries with iron fists, tossing and turning in their beds these nights, thinking "Am I next?" I certainly hope so. Of course, now comes to Egypt a period of instability and - do we know who always steps forward to (try to) take advantage of instability? Is it the forces of Peace, Justice, Equality and Compassion? If only we could learn to do so. No, it is not. It is the next wanna-be-a-dictator types. I head one young woman interviewed (well, sound byte type interview) on TV right after the announcement that Mubarket would step down. She said that yes, she was very excited, but also scared about what would come next. Smart girl.

Hey humanity! Let's get our act together, shall we?

Peace. Justice. Peace. Justice. In Egypt. In Haiti. Everywhere.

Asking for help

Anyone reading this likely knows my daughter is in Haiti working for a small non-profit called S.O.I.L. I added a link to S.O.I.L.'s web site to the blog. My daughter sent me the following note this morning. In addition to posting it here, I will send it to my rabbi since I know there are several of the members of the synagogue are doctors at the local hospital where I had surgery and received my cancer treatment. Perhaps they know an ENT. At any rate, I post it here because I do believe that each of us must do what he or she can, however small.

Peace to each and every one.

* * * *

Friends,

The email below is from my awesome RN/BSN housemate Brooke here in Port-au-Prince... I met David and his family on Saturday, he is wonderful man and will die without this surgery (Brooke told me this on our moto ride home and I cried with dust clinging to my wet face).

If you know a doctor- ANY sort of medical doctor, please forward this email... It would be a tax write-off, of course. ...and a most beautiful thing.

For those of you I've not written since I arrived in Haiti, I am well and inspired and I miss you and appreciate your support now, as always.

Love,
C

p.s. I mistakenly sent this without Brooke or Dr. Dauplaise's contact information. Please do share this email as widely as you are able. Thank you.

Brooke Beck- brooke.bbeck@gmail.com
Dr. Dauplaise- iamlivingthedream@gmail.com


Hello all,

I am sorry for the constant requests, but I MUST ask.

I am looking for an ENT who would be willing to come to Haiti ASAP. The case is below.

David, 47 year old male teacher, pastor and father of one 3 year old daughter.
David presented to clinic 4 months ago with a grossly swollen head and eyes and with serosanguineous fluid coming from both ears. Pt with a fever of 102 and HR of 160.

Pt was hospitalized for one month. His scalp was drained and he received IV antibiotics ( unknown what medication was used) for the month. David continued to have scant drainage from his R ear over the next 3 months. He then returned to the clinic with a low grade fever and swelling of the R temporal area at the beginning of January. David was started on IM Ceftriaxone 2 grams for one month. He had his head drained and washed out with Gentamicin one time. David just finished his month of injections and is now taking Bactrim BID.

David's head is swelling again and he complains of an increase in drainage from his R ear.

I have a CT from this month, I can't get it to attach at this time but find a way to get it to anyone interested.

If any of you know of an ENT that would be willing to take this case, please let me know. Derrick Dauplaise MD who is part of this e-mail chain saw and assisted in treating the Pt. If you have more questions and would like to speak over the phone you can contact him.

Thank you very much for considering this case

--
Brooke Beck RN,BSN
Medical Coordinator
Partners In Development
Haiti Cell- 509-3-471-4223
509-3-427-2409
US Cell- 541-326-9639
www.pidonline.org

Sunday night

Everything is okay.

I just skyped with my son and grandson! Two lovely young men. My daughter appears to be thriving in Haiti, finding work to do that matters.

The new pooch, Ella, continues to shine at Dog Obedience School and was able to find canine friends to play with in the snow at the local school yard both yesterday morning (on a walk with me) and this afternoon (on a walk with David).

David and I went to a very lousy concert on Friday night. Well meaning, but overwhelmingly awful.

Work is stressful. We're supposed to get more snow on Tuesday and Wednesday. I'm supposed to go to NYC on Thursday to attend a one-day seminar.

People are rising up in Egypt, following Tunisia, and touching off things in Jordan, and Yemen, and Lebanon. An older Israeli woman interviewed on TV said "we're afraid, we're all afraid." A young Israeli woman said "why shouldn't the poor in Egypt have jobs and enough food and their rights."

A cyclone heads for Queensland, already flooded, in Australia.

The world turns. Things change. Uprisings. Fists. Men wave flags on tanks. Soldiers mix into the crowd, shout slogans. Women in veils march in the streets. Fierce.

Hope lays out there in the world like the ground holding the memory of grass lays frozen beneath the thick snow cover, so deep you think it could last forever. It can't. Spring will out.

Peace. Peace. peace.

Saturday morning

Finally - a few birds landed on the new squirrel-proof Roller-feeder. David figured out how to increase the height of the pole it hangs from; that probably helped. And 30 inches of snow over the past couple weeks probably created the hunger. I think the problem may be the type of seed I used, based on something I read on line today. I might try changing the seed. Also we've had the delight of watching a couple more squirrels try to beat the "squirrel-proof" functionality. Foiled! (Of course, squirrels are creatures deserving of compassion, too. But they need to get their compassion somewhere other than my bird feeder!)

I've been thinking about how we develop our attitudes, well, really our neuroses, and specifically, our fears about doctors and medical care. Of course, disease and injury are scary, so if we associate doctors with disease and injury ...

[WARNING to the particularly squeamish - some of the following could be a little gross!]

At any rate, I am recalling an incident that happened when I was in my early teens, perhaps 14, maybe 15, that shows my attitude/neurosis/fear of doctors was already established. I was in New York, visiting my father, out on Long Island. Several weeks, maybe even a couple of months earlier, I had stepped on a piece of glass - not while in NY but in the backyard of my mother's house in Florida before coming to NY for my visit. I remember doing it. I thought I had gotten the glass out of my foot - from one heel specifically - and forgot about it. Now here I am weeks or even a couple of months later up in NY. My heel on one foot began hurting and I remembered having stepped on the glass those weeks/months earlier in Florida. I didn't mention it to anyone. The discomfort gradually got worse and became really painful if I put any weight on that foot. But still, I didn't tell anyone about it; I remember not wanting to go to a doctor or hospital but not exactly why not.

Finally one evening the whole family - my dad, stepmother, little brother and sister, older brother, and whoever else was there (the house always had visitors/guests) - was going out somewhere and I managed to convince them that I didn't feel up to going, not mentioning my foot. I think I probably claimed to be getting a cold, or having bad period cramps, or something. And they all left.

I went to my dad's bathroom and found a straight-edge razor blade. I got alcohol from my step-mom's bathroom. I washed the bottom of my foot with soap and water. Then I soaked the bottom of my foot in alcohol. Meanwhile I soaked the razor blade in alcohol as well. I then proceeded to slice off the skin and callous that over the weeks/months since stepping on the glas had grown over the injury. Eventually I remember there was just a final thin layer of new pinkish skin. And I sliced through that, too, and out spewed icky green-yellow pus and a tiny piece of glass! I washed out the place with water and then, gritting my teeth, soaked the foot in alcohol. That hurt! Then I bandaged it up, put on a sock, cleaned up the sink in the bathroom where I had done the deed, put back the alcohol and threw the used razor into the garbage. I curled up with a book and waited for my family to return.

They came home. "Feeling better?" someone asked. "Oh, yes," I said. Of course, I was worried about the wound becoming infected but thought since it had obviously already BEEN infected, what the hell. I kept it clean, changing the bandage often till new skin grew over it in just a few days. And never had a problem with it again. And never told anyone about it.

What kind of trauma or other experience had I had as a kid that would lead me at age 14 to "operate" on my own foot rather than tell my parents that I was in pain so they could seek medical help? I don't know; I don't recall. I remember being very afraid of getting shots from my childhood pediatrician. That's the only specific childhood "bad" memory related to medical care I have. Perhaps I suppressed something worse?

Anyway, the point is, that when I think of myself over the last year or so, when I was experiencing the symptoms that eventually did drive me to go to my gynecologist and ultimately led to the cancer diagnosis, surgery, chemo , radiation and more chemo - and I beat myself up for taking so long to get up the courage to go to the doctor, then I recall my 14 year old self, performing a kind of "surgery" on my own infected foot rather than seek help, and I know that whatever unconscious fears I have about doctors are deep-seated and won't be overcome overnight. I feel sad for the 14 year old girl who cut open her own foot and watched pus pour out, and then bathed the open wound in alcohol. Poor girl.

What complex beings each of us is! Who can stand in judgment of any other person, when even judging ourselves may break our heart?

Peace, peace, peace. Compassion for our memories, may they strengthen us for the future.

Thursday morning

I saw Dr. R yesterday morning. Good visit. She said that I looked "glowingly healthy". Not sure about that; the glow might just have been from slogging through the latest dump of snow, sleet, icy rain and slush on the hike up from the street where the bus leaves me to the Cancer Center. It was cold out. At any rate, I'll take it! I asked her how long I needed to "worry" - really just a generic request for a longer term hand holding. She said for 5 years we need to be watched closely and even after that there is always a chance of recurrence. Of course, I already knew that. What was good about having her say it is that it reminds me not to take anything for granted. Of course, none of us should, ever. And if we have faced something like cancer or any serious disease or other health condition, we have it brought home to us. But I have been amazed, less than 1 year post treatment, how easily one slips back into daily routines, into frustrations with the minor hassles and glitches of daily living, with putting things off and getting back in the "I'll deal with that, I'll think about that, there will be time for that -- later." We - I - don't know how much "later" there is, so I had better be doing with my life exactly what I want to be doing with it right now.

Of course, practically speaking, that's difficult. As you reach your 60's, the world seems to be telling you to get ready to deal with retirement; will you have enough to live on for the next 15, 20, 30 years? You think, well, if there were really a chance I might only live 5 more years, I would do things differently. But you don't know; you can't know.

Anyway, a good visit with Dr. R. We set my CT scan - tax day, April 15 (well, used to be tax day; this year I hear we have until April 18 to pay taxes for some odd reason having to do with some sort of federal holiday falling on 4/15). I guess while I'll be nervous about that scan, once it is over, assuming it is clear, it will be a good milestone - one full year post-treatment, NED (no evidence of disease). One year down, four to go to make the 5 year marker year.

Lovely gangly Ella started Dog Obedience School. She was a good girl and a big hit. There were about 6 dogs. Ella outweighed the next largest by about 50%. We worked on "sit," "down" and "look" (look being getting the dog to look at you and pay attention). The instructors pulled Ella out a couple of times, along with another dog or 2, to use to show the class what they wanted. Ella knows "sit" and "down" pretty well, and they had us not feed the dogs breakfast that morning and bring really yummy special treats (we brought freeze dried chicken and beef liver treats... yum!) Although excited when we got there to see the other dogs, Ella soon focused intently on the treats. She was goofy. At one point when the teacher asked her to "Down"," she first lay down like an expert, and then flopped over on her side and then to her back, waving her legs and kind of grinning at the teacher. The whole class laughed. She is a goof ball. In another week or so we start "Heel" and "stay". Those will definitely be more challenging for Ella.

I spoke to my grandson on the phone the other night. He is so articulate. HE told me his school class - pre-school, he is 4 - is making "dinosaur prints". I miss him.

My daughter is finding her feet in Haiti. Big happenings this past week. She met Paul Farmer, founder of Partners in Health. She was there when Clinton made the speech about the year anniversary of the Haiti earthquake. And now Baby Doc Duvalier has showed up - not a good sign for Haiti, in my personal view. At any rate, she is well.

The new Congress is in session. Reminds me of dog fights.

More snow forecast for tomorrow and really cold temperatures for the weekend.

Peace. Peace. Peace.

Wednesday night, no Thursday morning

19 inches of snow here since midnight last night. An unusual day, hours of shoveling, cooperation among neighbors. Our new dog, Ella, bouncing through the snow like a horizontal kangaroo.

My daughter is in Haiti, working for S.O.I.L. as its new "Program Manager," based in Port au Prince. She's writing regularly. Today's note mentioned that she had the opportunity to meet Paul Farmer, founder of Partners in Health, an organization long active in Haiti helping to address health care issues in a (unfortunately) unique way (unfortunate because it would be wonderful if more organizations, governments, etc. modeled it) - by not isolating "health" from economic and social issues. At any rate, I'm going to "cut and paste" an email from Corinne with a list of good articles marking the one year anniversary of the earthquake in Haiti. It seems such a personal anniversary to me: I was in such a vulnerable position myself when it occurred, a serious cancer diagnosis, surgery, chemo, and about to start 5 weeks of radiation followed by more chemo. Unsure of my own future. Now here I am - I spent about 4 hours shoveling snow today. I am - thanks to having a job, health insurance, good medical care, great doctors, the support of family and dear friends - NED (no evidence of disease) and actually HEALTHY. One year later. That's me. And in Haiti? Less than 10% of the rubble of destroyed buildings is cleared. Hundreds of thousands living tents - that's a generous description (sticks with tarps stuck on them. Forget "good medical care, great doctors" - how about toilets and potable water!!! How can this situation be permitted to exist? How can the United States, its government, its great philanthropists, its people - including me - not do something, do MORE - to address this? I don't understand.f

At any rate, here's C's email with links to suggested articles.

I write to you from Port-au-Prince on the anniversary of last year's
devastating earthquake in Haiti with a request. I have found there is
an incredible lack of understanding of, and thus, quite often, a lack
of concern for, Haiti.

My request is simply to read one or more of the articles I've linked below.

http://www.iacenter.org/haiti/embargoes.htm

http://www.huffingtonpost.com/bill-quigley/why-the-us-owes-haiti-bil_b_426260.html

http://dyinginhaiti.blogspot.com/2010/11/if-you-dont-read-anything-else-about.html


and, this one I've sent to most of you already.

http://www.huffingtonpost.com/bill-quigley/million-plus-remain-homel_b_807251.html

With love and for justice,
C

Peace.