Saturday morning

I'm back from my visit to Atlanta. Tiring, but good, and now I have a cold.

As soon as I arrived, I started suffering from allergies - at least that's what I thought. I bought over the counter meds which seemed to work about half the day (although advertised as 24 hour relief). Then when I got home, I developed what seems to be a full fledged cold, so I'm not sure if it was allergies, allergies plus cold, or just cold when I was in Atlanta. The 12-hour travel arrangement - Hartford-Ft. Lauderdale FL-Atlanta and reverse - didn't help, especially as the final flight from FL to CT was delayed 2 hours so I arrived at 12:00 a.m.

Anyway, I ended up taking yesterday off of work (well, mostly - I worked a little bit from home). I thought I needed the rest and the weather was chilly and dreary. We had about an inch of snow Thursday night into Friday morning.

My grandson is big and bossy (when playing HIS games) but smart and generally sweet with better manners than a lot of adults I know. It makes me very proud of his parents who I think are doing a very good job. It was good to see my daughter. She has returned to Haiti and as far as I know, accepted an offer that she commit to stay and work for SOIL for another entire year. She'll get to come back to the US about once every 3 months or so. She was busy with various SOIL-related tasks and errands, and we spent some time together as I drove her around in the rented car. I stayed with my brother at the new place he's renting. It's a lovely house and he seems happier, more relaxed than the last time I was there. We got to spend some time together, too. My daughter-in-law is very pregnant and we're all looking forward to the new baby to be born in early May.

Now Spring is struggling to push winter out of the way, to the back of climate's closet where it belongs, with mixed success. I hope we've turned the corner. I feel like a week of sunshine would help me kick this cold.

I have a CT scan on Friday, April 15 and see Dr. R the following Monday. That will be my 1 year milestone (1 year since treatment ended; hopefully 1 year NED - no evidence of disease). I guess I am nervous about it. From talking with D at work - who had leukemia 18 years ago! - the nervousness won't be going away any time soon, not when it's time for another scan or blood work, etc. On the other hand, what can I do about it? It is what it is. I feel good - other than having a crappy cold (although it's true that, in the corners of my mind, the places where mental dust and emotional detrius collects - there is the thought that this cold, which is my second in a month, or a continuation of the same one, shows that my immune system is somehow compromised. Oh well, got to just get over it.)

To tell spring to stiffen her backbone and make winter get lost, I'm going to post a photo from my trip of my lovely daughter and my handsome grandson, who love each other very much - as is obvious from the pic - as well as the fact that they are having a good time.



Peace, peace upon us all.

Sunday morning

I have learned that temperatures on Friday actually broke records. I believe it was 76 degrees in parts of CT. About 70 or 72 around here.

Yesterday cooler, but still beautiful. Ella and I went to the park. It is waking up. Skim of ice on the side of the pond that gets more shade. Ducks doing their mating thing, pairing off. One pair in a large puddle at the edge of the wood on the western loop. Time to keep an eye out for the muskrat. The heron. Even the foxes.

Last night I went to synagogue and heard Megillah Ester read at the start of Purim. I joined the "quiet" reading - there were 3 separate ones. The main one - large, noisy, lots of kids ages 5-12 dressed in costumes, with noise makers - all in the spirit of Purim. A second one with the scroll of Esther read by women for women. And the "quiet" one, for people with small children and babies and others like me who are not in the frame of mind for the regular chaos of Purim these days. Purim party followed but I didn't stay.

This morning Ella and I went back to the park. Many red-winged blackbirds apparent by their distinctive calls. And fat robins. A couple of Canada geese flew in while we were walking.

After millennia, spring goes for it again. Can we human beings learn from that?

Peace.

Friday afternoon

Short post.

Beautiful day. 60 degrees. Light breeze. Sun. Two birds in a tangle in the front yard. Can't tell if they are males vying for a mate or male and female doing a mating thing. Only small patches of dirty snow here and there.

I took the day off.

My daughter called from Miami. She left Haiti (for a week's visit in the US) on the same day that former Haitian President Aristide arrived. I go to Atlanta next Thursday for a long weekend.

I feel like the universe is humming.

Peace.

Friday night

Okay, I am a slug. I admit it. And a warning - this is a LONG post.

It has been weeks since I wrote. I have often thought about it. Intended to. Wanted to. Even started to. And then the slug portion of me rose up and took charge and I did not do it. I have sometimes gone days without checking my email. It's true that in the interregnum I had a bad cold that lasted almost 10 days, but ... really ... a cold?

I think part of what stills my rapidly typing fingers is no longer having a real day to day sense of people reading this. Except J. Who does so with regularity and comments, not here, but in separate email messages to me. (J - here's a message just for you: congratulations on receiving the requests to send out parts of the book to be read by those publishers. It will happen! I hope soon. And naturally I hope this is the one that makes you rich - if not famous!) It's not that I really write here for an "audience". In the beginning I wrote here to share updates about the cancer-battle with family and friends, that's true. But soon I found that writing here was for me, too, and even for me, more than for others. Gradually over time, I guess daily life has caught up and filled my physical, intellectual and emotional spaces. I feel myself yearning to write here, but being tired. Etc.

I still think there is value to this experience. For me, even if most of my family and friends are not following closely or have stopped all together. The thing is, the cancer experience is on-going. And this blog is a witness and will someday provide a record of the journey. In just about a month, I have my next CT scan - April 15th. That will be almost a year to the day after finishing chemo and having my first benchmarking CT scan. A year post-treatment. A year NED (no evidence of disease). That is a milestone.

I did see Dr. M on the follow-up Monday visit. But ironically I saw him before then, too. That Sunday afternoon I was in the local pet store buying dog food and treats and a guy in line behind me says, "Hello. I'm going to see you soon, aren't I?" I knew I knew him, but couldn't figure out from where (he was wearing jeans, a coat and hat). He said, "Dr. M." So I had the opportunity to tell him that I was upset about having been rescheduled 5 times. I asked him what the best day, the best time to schedule future appointments was to avoid having them cancelled. Tuesday mornings he said. Of course, at least one of the rescheduled appointments was on Tuesday morning. However, the appointment went fine. I do like going to see him. His attitude about my health fills me with confidence. He radiates belief that I am well, healthy and done with cancer. It's not that he says those exact words. But that is the feeling I get. (Whereas with Dr. R I get the feeling of being guarded fiercely by a mother hen who is concerned that something could happen to me and determined to protect me from it.) The combination of their approaches works for me. I don't think Dr. M is the real problem; I think his staff is incompetent. (Remember the woman who blurted out that Dr. M "recommended chemo and radiation" when I was asking whether he recommended seeing me in person or talking to me by phone?) There's been quite a turnover in the 18 months I've been going to see him. So if he has a problem, it may be in staff management.

Today's news was the 8.9 earthquake and tsunami in Japan. This "natural" disaster (quotation marks because manmade circumstances make nature's events worse) follows on the heels of continuing upheaval in the middle east, Libya becoming the latest focus of international attention. If the US weren't already bogged down in Iraq and Afghanistan, I could see Libya leading to intervention. Meanwhile the skunk in Wisconsin pulls underhanded strings and forces through the anti-union measures. And then stands up and sticks out his bony white chest and brags about it. Interesting article in recent New York Times about "inaccuracies" in NJ governor Christie's "claims" about public employees. For example, they don't pay any of their health care costs - when they have done so for years, etc. Like Frankenstein versions of the robin I saw today, these guys are the ugly harbingers of a Republican "spring" we may one day wake up to. If we Americans don't put down our IPhones and IPads and pay attention. If we don't DO something besides stuff our faces and follow Lady Gaga on Twitter.

I think that the reason that my two favorite genres of "light" fiction are legal thrillers and science fiction is that one offers a world in which evil abounds but justice can triumph and the other offers worlds beyond this one entirely, where humanity has survived its greatest challenge... itself... often to take that challenge to other worlds.

The weather report tonight forecast 7 days of over 40 degree (Fahrenheit) temperatures. Perhaps the ground will finally dry out. Perhaps the sun will shine. The birds are singing high in the bare branches of trees and hidden in thick brambles of leafless bushes. Even though I can't see them, I know they are there. I believe in them. They believe in Spring.

Peace.

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