We're off

Thurs. 3/29 8:30 pm. Carol and I are off to Bethesda for the weekend. Maayani turns 4 on April 3rd, but her party is Sunday. Both Riv and Greg are running races Sun. am so we'll help with the kids and party as will Bob and Ruth Ellen. Fun weekend. Monday we're back to MSK to see Doctor Berman for a routine checkup. Been trying to gain strength by walking. A walk up Prospect Street to the Avenue was a bit of a strain, but it helped get my heart pumping. Will try to play some trombone tomorrow as well with the Tbone 4. So I have the month of April to try and return to a normal strength level then back for consolidation Chemo number 3 in early May. Am scheduled for some bass gigs at the end of April, so Carol and I are looking at the middle of the month for our getaway, maybe Cape May. Peace. Enjoy your Pesach and Easter. JIMBO

Checkup and Life Style

Monday, March 26, 2 pm. This morning Larry H drove me into MSK for a checkup. My numbers are up, no transfusions needed. I'm still staying out of crowds etc. for a while, but am occasilonally getting to hear some music live and getting to the diner. Soon I'll be able to start playing bass etc. Am gathering muscle strength gradually with little walks in the neighborhood. Not allowed to lift weights or swim yet. But yoga positions are ok. Stretches if I'm careful. The body takes quite a hit with Chemo and it takes a while to recover, and can be dangerous if you push it too much. I got a real lecture about this kinda stuff last hospitalization. I had forgotten to report a winter fall on the ice when I hit my head at Beckys house. The Chemo nurses flipped and warned me of the dangers and the necessity of getting professional evaluation next time anything happens, here or anywhere. So... my somewhat casual attitude about different knocks etc. has to be tightened up during this Leukemia/Chemo process. My lifestyle at this time is rather a softer quieter style. Listening to music, reading books, etc. Practicing guitars. I'm a bit more of a homeboy now. I'm not allowed to drive for another week or so. But this is ok. Different for me, but opens other new possibilities. I spent some time with pastels in the hospital and feel I want to spend more time there, and with watercolors again. Maybe oils next summer in Woodstock. For now, enjoy the beautiful Spring, bird calls, etc. close to home. Peace. Enjoy the beauty of the Earth. JIMBO

Outta here

Fri., 3/23/07 4 pm. Dr. Berman just left. She feels my numbers are up enough to protect me and she's releasing me now. Carol is on her way in to pick me up. I'll come back to the clinic for a blood test on Monday in case I need platelet or blood coverage. Meantime, Shabbot Shalom everyone. JIMBO

Soon

Thurs. 3/22 at 6:50pm. My numbers are coming up. Yesterday had a blood transfusion and a platelets transfusion. After this mornings daily vials of blood my numbers are turning upward:the White Blood cell count was down to 0.6 for 2 days, now up 1.6 and climbing. Most important the neutrophils were at 0.0 for 3 days, now up to 0.6 and climbing. So, I hope to be released by Sunday barring any other setbacks. One fellow patient left an hour ago, he's been here 65 days. Brutal.
Today I got out the pastels to play. Strange. Last night Mark Rothko or one of his paintings was in my dream. This morning front page of the NYT Arts page is a Rothko painting Rockefeller is selling through Christies. So, I drew that painting, then played around with colors, shapes etc. Great fun. Also been practicing classical guitar. Yesterday a brazilian guitarist volunteer (Allessandro) came by and we played together. Fun. Tonight Carol is here. Its time for Jeopardy. Gotta go. More later.JIMBO

Steady

Tues. 3/20 11 am. After a clean shower. Feel good. WBCs increased today to 0.8 after being 0.6 for 2 days. Dr. Berman and Dr. Heaney were both here. Ellin wants my Neutrophils (which are at 0.0 still) up to 1,000 for several days before I can go home. So, I haven't heard where they are today, but hopefully I can get out of here by the end of the week.
New roomate Brad is in the arts; he's a dancer/vocalist/ actor on Broadway. Worked with Christine in 42nd street and moved over to Beauty and the Beast. He was diagnosed after me in December. We have similar stories of being put back into here after a small infection. But... he's scheduled to have a bone marrow biopsy in April, and that will tie him up here a few months, so he also, like me, wants to get out of here. Since I'm scheduled to return early May and July I also need to breakout soon as possible. Need to go home to Carol soon. This hospital stay is a necessary drag.
Brad and I are talking to each other about our experiences. This is one of my goals. I want to hear how other folks are dealing. I'd like to talk to a few more survivors about experiences with remission since that seems to be the direction Doc is aiming for. I'm very encouraged by my bodies reaction to everything. It seems to be cooperating and bouncing back fast. I'm aiming for another remission here of less than 2% blasts (that would be the 3rd time in a row if I can reach that again).
Bob K is coming over for lunch. Glenn M-A for dinner time. Carol will take a much needed break today. She works at Westfield Library now on Tuesdays.
Riv had a great time in Texas. I'm reading about Texas now. Larry McMurtry's new book "When the Light Goes". I've been reading the Duane series in Woodstock. Gotta go now. Thanks for all the cards,calls, support. JIMBO

Countdown; Spirits Up

Sun., March 18, 4:35 am. Yeah, I know it's early again, but I'm on this schedule whereby I get up right after my 4 am vitals checkup and grab my 1st cup of Joe (DeCaf); feels like the Army here at 4:30 am. It's quiet, but the nurses are working. So I get my cup and sit here with the MacBook cruisin' or writing. My roomates fortunately haven't complained. Really the setup is such that it works easily. Carol is used to me getting up sometimes at 3 am at home, where I get a cup or a snack and sit on my EZ chair and write in my diary (which I forgot to bring here this time) or read the papers etc. And yes I get the NYT here each day; old Morris comes by and greets me "Meester Chjim, nice Mr. Chjim, noospepper, Times, good Meester Chjim". $1.
So, the nose is clear, no more "Rudolph". But since the counts are real low, I think the White Blood Cell count yesterday was 0.2, and I did receive another transfusion of platelets yesterday, the Docs want me to stay here so they continue to give me intravenous anti biotics for safety. Remember last time I avoided coming back in the hospital, and was monitored every other day, and maintained with a daily pill of Levaquin. That evidently was unusual, and this business of having to come back in is a bit more common. Hah!! Drag for me and Carol. I feel fine, normal, energetic and alert, not hurtin' at all. Just a little groggy when they give me Benadryl which is before each infusion of anti-biotics. Really during the platelets infusion my heplock hurt, it had been in since Wed. and I guess things were breaking down a bit, so I called the nurse (Jennifer) who stopped the platelets, called in a phlebotomist who quickly and easily put in a new port, and we continued. Much less pain then. So I'm glad I complained. Carol and I passed the time yesterday reading Trivial Pirsuit questios to each other!! Hah! It's fun. We didn't have the board, just the questions. We've gotten to enjoy Jeopardy for the same reasons. It takes your brain to different places in a hurry, you gotta be quick. We feel we're not as quick as we once were, but that might improve if we keep at it. Carols been back to NYT crossword puzzles, Wii Shortz, just for fun and to keep the brain ticking. Of course Mildred does them hours each day (at 94 guys!!!). And she reads books, and knits, and has her daily routine errands in the house. Its wonderful for her and for us.
So, as for this hospital stay, I could complain; why not let me now go back home and use levaquin again?? But I have to trust the Doctors judgement (Dr. Nicole LaManna has been here leading the team the past 2 days, she you may remember was on rounds when I was 1st checked in on November 13, 2006 and was my covering Doc for about 3 weeks then). So I welcome a phone call or a visit when you get a chance. Nice to hear from Larry T and Tommy G and Gleen M-A the past 2 days. And of course Rivvy calls me each day. Greg gave her a present for her birthday so she's in Texas this weekend, warm and toasty with Shari and Adam and Mia and her siblings. Fun. She got out of town hours before the shutdowns Friday.
So I dig watching some of the NCAA games. Bernie must be fumin' over the Irish loss. Sorry Bern. I can watch games all day long with no guilt, I'm doin' my job!!! Really, it's amazing how much rest and sleep I can comfortably do. Very much unlike my usual routine, so it's interesting. I guess I'm catching up. I'll be well rested and ready to wail when I get outta here. Bob and I will have to shed our tunes again ala Houston and Ron! And Carol and I will have to travel again. Maybe the shore now if it warmsup a bit, but definitely Bethesda real soon. I miss my Grandchildren. But we get to talk on the phone sometimes, if they're not too busy. Hah! It's amazing to hear the social calendar of a 3 year old (almost 4, April 3rd is a comin up) and a 6 year old. These kids have more parties to go to than I ever had. And playdates, and dnace lessons. So cool. Love em.
Gotta go. Give me a shout. JIMBO 973/868-1679.

Back In the H

Fri., March 16, 4:30 am. There's a reason I haven't written in a few days. Carol drove me in Wed. to MSK for a blood test/checkup. Once Dr. Berman saw my red nose she slapped my ass right in the hospital bed, Room 1225A. IT SEEMS NOW IS THE TIME FOR MY NUMBERS TO SINK, PUTTING ME IN DANGER WITH NO WBCS. THE RED NOSE APPEARS TO BE AN INFECTION AT A LOCATION OF ALOT OF BACTERIA ETC AS IT ENTERS THE BODY. SOOO, NEED INTRAVENOUS anti biotics, specifically Vacomycin. Get about 2 bags a day. I feel fine. Haven't yet felt sluggish. Had a platelets transfusion (thank you again John Straus) on Wed once I was in the room. Then yesterday I found out once you've been brought in for any problem during this post Chemo period they keep you here until your numbers go back up. Sooo...I'll be here at least 10 days. Drag, but I realize theese guys know what they're doing and I don't need a huge infection fight. I'd rather feel well and take the necessary precautions. With the diabetes etc. a fight against an infection can be a mean, heart stopping challenge if you know what I mean. So, here I am, resting. Not a bad thing considering the way I have lived my life. Slowing down for a bit to read, practice guitar, paint, talk. It's all ok.
My eyes have been a bit of a challenge. Burning, trouble focusing etc. so we continue the eyedrops, and its getting better.
Carol had a meeting last night, and then today with a storm coming she will come in early and make an early decision about traveling home. Meantime, I can't feel here that the temperature was in the 60s then the 30s. Its the same each day here. I got up to the Library to checkout some tired old books. I have a chance to get to a concert now and then as well, unless, as what happened yesterday, I get drugged up (with Benadryl) before the concert time, then I sleep through. After Benadryl I can't negotiate the halls etc. I'll get a ticket for driving a drip pole while under the influence!! The food is still ok, but I've settled in to rather a repetitive cycle of foods. I'm hungup on Chicken Consomme, oatmeal w/ stewed prunes, and an occasional quesadilla. But, it's ok. I was at the Parkwood on Tuesday with Susan for a great breakfast. You can call me at 212/639-4360 or 973/868-1679. Meantime enjoy the gigs. JIMBO

Goin Home

Sat. 3/10. 11 am. D Day, Departure Day.
Yesterday John dropped off a DVD after giving platelets, the Down from the Mountain Concert. Dug it twice. So now, after playing guitar I'm in a folky mood. Outside the window is a crew on a roof working steel.

"I'm a steel workin' man in a steel workin' band under a Bay Crane wire all day long,
My back is a achin' and my knees are a shakin' under a Bay Crane pulley all day long,
The boss man's a cuss but I don't make a fuss cause my face is a burnin' in the wind,
The torch is a cuttin' and the food is lousy muttin' and my but is a pushin' for a sit,
I'm a steel workin' man in a steel workin' band under a Bay Crane wire all day long
We're on top of the river by the sliver of York, just a liftin' and shiftin' all day long.

etc.etc.etc. We'll see what happens with that, in any case it's fun to hear the wonderful sounds.
Gotta shower. Riv will here soon, CB too, and then as soon as I get the word I'm outta here. Later. JIMBO

Spending time

Thurs. 3/8;2:15 pm. You know, in 64 years of living on this earth I've not taken much time for pause. We live in such an active world. I'm not complaining, I like being active. But here I'm alone alot with time to think, listen to music, write my blog etc. As I'm writing I'm digging a fine cd, Charles Lloyd and Zakir Hussain, Sangam trio. Gas!! Love the Arabic drums and scales influence on the band. Also been listening to some fine albums from the 50's I couldn't afford to buy then, which are now reissues. An amazing album of Gil Evans stuff (w/o Miles) which I think I remember digging at Lee Harris's house in the late 50's. Love it. In yesterdays NYT Wynton announced they are spending time with this music next season. Cool. Also have early Ahmad Jamal stuff. He was so influential and different. So. here I'm playing catchup. Also have some classical and the new Diana Kral with the Clayton/Hamilton Big Band. OK, not great.
This morning I took time, I have time here, to do an art workshop based on the book "Drawing from the Right Side of the Brain". We started simply taking our signature, turning it upside down, and redrawing those shapes. Then the same with another persons signature, to get your eye and brain away from an understood image (the signature) but instead focus on the line..the shapes (s). Then we took a classic painting and did the same, in pastels. Great challenge , and fun, with good results. Especially for taking your mind elsewhere, beyond your scene here. One of the patients with me had a very sever Brain tumor, or face tumor thing, another guy looked a little bit less under the weather. We all enjoyed. Now at 4 pm there is a drum circle. Since I'm digging Zakir I'm getting inspired to do that.
Yeah, I dig having time to draw, listen, and play my guitar. Yesterday the music therapist came by and we sang and played country tunes together. Fun. I gotta get going on that country stuff. I'm enjoying trying to learn thos styles, guitar licks etc.
OK, see you all soon. Again thanks for the e mails, phone calls, prayers, thoughts, blood and platelets. Love,
JIMBO

Wed early

Wed. 3/7 at 5:30 am. Just had the eyedrops; every 6 hours, 5:30 and 11:30, am and pm, started 24 hours before the 1st bag of Chemo.
Have I talked about the wonderful international quality of our staff here?? Anthony, my night assistant nurse for the past 2 nights taking vitals etc. is a Rastamon with a 10 year growth of hair rolled on his head. He's quick and efficient and doesn't socialize much. Yesterdays phlebotomist was Safiyah, a Muslim woman with a lovely Burkah on her head. Many assistant nurses and some nurses are from various islands so we hear a potpourri of accents. They all love Carol when they see her. Carol thoughtfully gave Thanksgiving and Christmas gifts to thank the staff. One of assistants told us she likes Snickers, so she got a big Snickers bar and laughed heartily. The staff is caring and efficient mostly. Sometimes they get overwhelmed. They work 12 hour shifts for 3 or 4 days and then 2 or 3 days off. Mariah (the soldier) was here for my 1st 2 days, but is off today and tomorrow and will be back Friday. I haven't seem "Miss Irish as Paddies Pig" yet this week, Katrina, but maybe today. So, I celebrate this international staff. Somebody must handpick these folks, someone with high standards.

I haven't been able to get to talk to any other patients yet. My roomate is hard of hearing and quite sick. This is the 3rd very sick man in a row I've had for a roomate, and that's a difficult situation for sleeping at night. They need constant help. I feel for them and their condition.
Carol was here after work last night. Great to see her. I miss being home. Bob may come by for lunch today or tomorrow. John and Carolyn are giving platelets on Friday and may be by before or after. I'm reading a John Phee book, profiles of 4 interesting people. OK. Been playing some guitar to keep in shape somewhat. Later. I'm hungry. JIM

In the hospital

Tues. 3/5 at 4 pm. Well we're back on the 12th floor of MSK until Saturday. I completed 2 bags of Cytarabine (sp?), one last night at 6, another 6 this am. Now I'm off the Chemo until Wed night. But of course there is a cocktail of bags dripping saline, and anti nausea drugs, some antibiotics etc. Extra pills for laxative, Nexium for the possible flux problems, etc. Its funny how the schedule goes between administering insulin to administering eyedrops, pills,etc. it sometimes is hard to get to sleep at night. Oh yes, I forgot, 2 times over night and 3 or 4 times during the day the assistant nurse takes your vitals: temp from the mouth, blood pressure and pulse rate and oxygen. More interrupted sleep. I'm not complaining, these guys are taking care of business and I have all day to catchup. I got in 2 naps today until the phone rang and then Doctor Berman came to visit me. All is going well so far.
Just for kicks I investigated over internet the process for Bone Marrow Transplantation (BMT) and I can see why she hopes to avoid that very straining process for me. Dr. Berman is quite certain she can get me into remission by this process such that I don't need BMT. It's a bear.
So, the food here is still good, and I'm gaining weight ok. Not that I need to, but what the hell, I gotta try everything on the menu don't I??
So I hear it's cold out there today. Buncha wimps, it feels toasty warm here. Got some books, CDs, DVD's, my classical guitar and some music books, and a drawing pad and pencils with me, and of course this laptop, so I can keep very entertained here. Carol was with me all day yesterday and Debra came by last night for a calming visit. So all in all, we hope for this round to again be uneventful. But when I remembered to tell the team about a fall I had on the ice in Bethesda I got read the riot act. I never felt any problem, but evidently as a Leukemia patient I am in real scary territory with respect to falls, bleeding, infections etc. Until this process is over (hopefully by next fall) I cannot make decisions about any such events myself. I have to report it to the docs and go to a hospital to be evaluated. Maybe x rays, scans etc. Gotta go. JIM

The Berkshires

Sun., 3/4 at 7:00 pm. Well Carol and I have continued our new tradition of getting away alone for a few days before I go back in for more Chemo. This time to beautiful Lenox, Mass., which is quiet this time of year. There was still snow and ice around, but we took 2 hikes into Kennedy Park and into the Audobon property. We enjoyed restaurants, and a fine bookstore. The Garden Gables Inn had classical music playing in the beautiful living rooms with a glowing fireplace and delicious snacks; cider, cookies, apples and sherry. The breakfasts were wonderful, our hostess Cindy was lovely and lead a good Yoga class. The old house is sprawling with interesting corridors and our room was sunny, with a porch and a hot tub. Big King size bed. All lovely. Walking distance to restaurants and shops. We took a side trip to North Adams to see the new art project MASSMoCa, an old mill/factory made into enormous art space. Very interesting, although 2 floors were closed for setting up a new exhibit.

Then we also enjoyed the Norman Rockwell Museum. On the way up we stopped by the Woodstock house and on the way down we stopped in Woodstock to visit Taco Juan's for my favorite: a baby wet Burrito (with Beans). Yummmm.
So today we enjoyed Kim and Skip's engagement party on the beach in Long Branch at Rooneys. Then over to Highlands to visit Bruce and Laurie, then over to see Kim and Janes house project in Rumson, then back home.
Last night my cousins Barbara and Ed dropped by to visit and we ate at the Parkwood (hadn't been there in days). Great to see them as they head South for the spring.

Last night Benjamin and Maayan were in the Purim play at schul, as was their Daddy. I believe they were among the kids who held the signs of introduction for the different acts. I can't wait to see the video. Soooo cute. I assume they were dressed up as well. Maybe I'll get pix on the email soon. Love them soooooo much.

So tomorrow the hospital asks me to check in at 1 pm. I started the eye drops (to prevent the Chemo from burning up my eyeballs!!) and expect the 1st bag to be loaded and ready at about 5 pm, after some hydration, anti-nausea drugs, etc. etc.
So, again, thanks for your constant support, good wishes, blood and platelet donations, prayers and good vibrations. I'll send reports from the 12th floor at Memorial Sloane Kettering. I'm interested in trying to talk this time more with other patients about our experiences. I miss Michael so much. He was brilliant we all know, but so kind and upbeat through the times we talked about this disease and therapy. I listened to some more of his music today.
Peace and Love, JIMBO