May 27 – Health Update – More of Life During the Pandemic – Two Little Sermons

Let me start with the news from the health front. I had two televisits with doctors at Mt. Sinai. Dr. Keyzner wants to see me in person at Mt. Sinai the second week of June. I have not been there since February 5^th when I had my last blood test. My nephrologist, Dr. Chung, also wants me to have some lab tests in June. Both doctors commented on the fact that I look good. They both said that I need to be careful and not go outside other than to exercise. They agreed that until there is a vaccine or effective treatment I will have to restrict my activities as I am doing now. I am so thankful to be alive, but my full reentry into the world has now been delayed. I think of the day five years ago when Dr. Keyzner said that the recovery from a bone marrow transplant would take six months to a year and how long that sounded to me. Now it looks like my restrictions will continue until two years or more after the transplant. So be it.  I am very thankful just to be alive. I feel like saying to those who complain about the current restrictions, I understand that it is taking a great economic and psychic toll, but this is a lifesaving issue. Sometimes you have to be patient and sacrifice for the common good.

I have been keeping occupied. I continue to read, solve crossword puzzles and watch too much television (I was treated so poorly by Sprint that they gave me a free subscription to Hulu. I highly recommend Mrs. America). I keep myself attached to the rabbinic and synagogue world. I am captivated by the creative ways my colleagues deal with the pandemic. If I wanted to I could take a class, listen to a lecture or participate in a conference call every day. So many Jewish organizations are offering wonderful content. I am learning in a class with Rabbi Shai Held of the Hadar Institute about the Book of Psalms. This week I began a course for Rabbis and Jewish educators from the Pardes Institute called, Mahloket [Hebrew for conflict, or disagreement] Matters: How to Disagree Constructively. At this time when there are so many disputes and it seems that people are living in totally different realities, I look forward to learning how to try to bridge and understand those differences.

I also find that I cannot break an old habit. When I see or hear something that could be used in a sermon, I still cut it out or copy it to my computer. I recently found two fascinating pieces. Both deal with issues of religious life that parallel Jewish practices and sources. One is about mourning and the other about hope. In my pre-retirement life I would have woven them into a sermon. Since you won’t be hearing me speak from the bimah you can read the following or if you have heard too many of my sermons, you can skip the rest of this blog post. I won’t be insulted.

The first is from this week’s NY Times Sunday Magazine, “Insanity Can Keep You Sane If you can’t live normally, why not find little harebrained ways to warp reality?”  By Molly Young. I like this because it offers a reflection of how a community supports a person who is mourning in ways that are similar to our practice of shiva.

 

Here is the quote:

Some years ago a friend of mine lived with a community called the Bruderhof. The Bruderhof is a constellation of settlements numbering about 3,000 people, spread over four continents, with roots in Anabaptism — a 16th-century radical offshoot of Protestantism that believes in a separation of church and state and adult baptism, among other reforms. Members are pacifists who renounce private property, live simply, dress modestly and — to judge by the official Bruderhof website — have a distinctive sense of humor. Amish-adjacent’’ is probably the easiest way to describe them, but they’re allowed to have smartphones, drive cars and upload (utterly delightful!) YouTube videos.

At some point in my friend’s residence, a pregnant couple from the community went to an outside hospital to give birth. The baby was stillborn. Instead of the planned celebration, a course of mourning began. The day after the couple returned, a busload of men and women from a neighboring settlement showed up to take over daily operations. For 10 days this fleet of visitors cooked, cleaned and performed whatever tasks needed doing while the home community paused. ‘‘It felt like something from ‘Lord of the Rings,’ ’’ my friend told me. ‘‘All of a sudden this ancillary battalion shows up over the hill, and you feel like you might win the battle.’’ I can’t claim to understand the exact meaning of this protocol, but it makes sense on its face. A grieving period is marked by altering outer reality to mimic the state of the bereaved’s inner world: absolute inertia, total cessation of routine. The ratification might not be curative, but at least it would feel cosmically sensical.

The philosophical underpinning of this process is something the Bruderhof calls gelassenheit, and like a lot of ultimately untranslatable German words, the meaning has been extensively discussed, debated and written about on the internet. (The Anabaptist blogging community is surprisingly robust.) Yielding, waiting, submitting to God, abandoning the self, surrendering pride, subordinating the individual to the community — this is the English word cloud around gelassenheit. One blogger described it as ‘‘an antidote to the sheer pompous weariness of the world,’’ which sounds about right.

 

If I were to quote this I would start with the fact that it is so difficult to grieve during this pandemic. “Lord of the Rings?” What the author heard about is something out of Jewish practice. Our observance of shiva and the article show how different religions understand the need for community at a time of loss. Nothing can substitute for the life that is gone, but the presence of your community can help you navigate those mournful times.

 

The second one is from a podcast by Kate Bowler, the author of Everything Happens for a Reason…and other Lies I Loved. She was interviewing Wajahat Ali, a New York Times Contributing Op-Ed writer, public speaker, attorney and father of two. From his bio, “He believes in sharing stories that are told through a culturally specific lens to entertain, educate and bridge the global divides. His essays, interviews, and reporting have appeared in The New York Times, The Atlantic, The Washington Post, The Guardian, and New York Review of Books. In 2019, right before he found out about his daughter’s diagnosis, [with cancer] he gave a highly watched TED Talk.”

 

Here is the quote: Wajahat Ali: …there’s…a saying of the Prophet Mohammed, which is very similar to Christian and Jewish teachings, where He told his followers that even if you see the Day of Judgment coming around the corner, you have to plant the seed. So if you have the sapling in your hand and you’re like, “oh, I was going to plant the seed. Oh, look, it’s the four horsemen. They just came over the mountain, huh? What should I do?” And yeah, in the, in the, in the command, in the recommendation rather, from Him was to plant the seed, which means even if it seems that literally everything will fall apart. You still have to have hope and not just have hope, you have to act on that hope.

Here is the parallel Jewish source, Avot d’Rabbi Natan 31b, “Rabbi Yochanan ben Zakkai [1^st century C.E.] taught: “If you have a sapling in your hand, and someone says to you that the Messiah has come, stay and finish the planting, and then go to greet the Messiah.”

No knows when the pandemic will end and it can seem like things are falling apart. So many are grieving the death of a relative or friend, and there is great economic hardship. I have been fortunate not to face such loses. I try to be optimistic. Maybe we should go out and plant a tree or at least call the Jewish National Fund and have them plant trees in Israel in memory of those lost lives to remind us to hope.

April 20, 2020 – Managing During the Pandemic

First I want to express my condolences to those who have faced a loss during this pandemic. There are so many heartbreaking events. Two members of our congregation have died because of covid-19. I hope that there is healing for those who are ill. I pray for an end to this pandemic. I would like to say that I pray for a speedy end to it, but I know it will take some time before it is gone. I also pray for leadership that will unify our nation, ease our pain, speak the truth and help us to heal.

I am feeling fine. I had a televisit with my doctor at Mt. Sinai. She did not want me to go to the hospital in person and she told me not to have a blood test done here in New Jersey. She wants me and Rhonda to stay isolated. We are grateful to the friend who has been doing grocery shopping for us. When the weather is good we have been taking walks but with masks on for the last several weeks, as the doctor told us to do before it became common. Gabe and Marina have postponed their wedding until the fall. Last week Gabe set it up so we could play Boggle, a word game, with them on Zoom. No surprise, they soundly defeated us. Aaron and Deena are fine and continue to work in Minneapolis.

When I sometimes consider the current isolation, I can’t help but think, “Welcome to my world.” I was in quarantine for many months, first in the isolation room at Mt. Sinai and then for many months at home. What was different were the trips to the hospital three times a week. I did have face to face or sometimes mask to face interaction with doctors, nurses, and many other personnel at Mt. Sinai. I think of how that was comforting and how difficult it is now without it. I try to keep connected. I make more phone calls to family and friends. I hosted a Zoom Seder. I am glad that I am a year and a half past the transplant. I can’t imagine what it would be like to need to go to Mt. Sinai multiple times a week and be reliant on transfusions there, as I was for so many months.

I had been, two months ago, beginning to get out of the cocoon I had nested in, going to Shabbat morning services, teaching my Tuesday class, taking some classes at the local community college, and attending meetings of the Fair Lawn Human Relations Committee. Now it is all computer based and while I find it comforting and meaningful to attend a daily minyan service on Zoom, it is just not the same.

I am trying to keep busy. I read my e mail and attend a class on line, work on a new family photo album, read some books, and borrow e-books from the library. I expanded my knowledge of Broadway show tunes after reading an article about recommended ones in the New York Times last week. They listed many of my favorites and who knew there was a hilarious cast album called, When Pigs Fly?

Last week I decided to interrupt my Tuesday class’s study of the Book of Deuteronomy with a Passover lesson from the prophet Ezekiel that is recited during the holiday. He visualizes a valley full of dry animal bones that are resurrected and become living creatures again. It is a message of hope to the Jews who were exiled from their homeland in Israel to Babylonia. Even at that time of fear and anxiety he declares that faith in the future is possible. At one point Ezekiel says “v’avdah tikvateinu – our hope is gone.” The words of HaTikvah, the national anthem of Israel allude to that phrase and add one word to declare, “lo avdah tikvateinu – our hope is not gone.” Let’s look forward to a time for each of us, for our families and the entire world when our period of fear and anxiety will end and we will see a future with renewed optimism, confidence and hope.

March 10

This week I called Mt. Sinai. I was hoping for some clarity about what I should do about restricting my attendance at public events because of the Corona Virus. Just as I have been adding events to my schedule, the virus is spreading. As in many matters with my health I was seeking clear answers and the best advice I got was, listen to the CDC warnings, take precautions and then decide. So far I have decided to absent myself from a number of activities. I did not attend Purim services, but listened to the reading of the Megillah (the Book of Esther) in a live streaming broadcast from the Park Avenue Synagogue in New York. It was very well done. I exercised at Retro Fitness last Sunday, but I will not be returning there for the foreseeable future. If the weather continues to be warm, I will go back to Saddle River Park and walk there as I did yesterday. I will stay home on Shabbat morning after regularly attending services at the Fair Lawn Jewish Center/Cong. B’nai Israel for many months. I decided not to attend the classes I started at Bergen County Community College, in their special courses for retirees. However I just received a phone call that they are going to be cancelled for next week at least. I am praying for a speedy recovery for all who are ill and that this epidemic soon ends.

I recently finished a project that I began a few weeks ago. I printed out all of the blog posts that I wrote, and the e mails that Rhonda sent out over the last year and a half, placed each in a plastic sheet protector and then in a leather bound loose leaf. It is a reminder of what we have been through. I added a number of photos to that book. I began with the ones we put up on the wall in my hospital room at Mt. Sinai of my family and continued with pictures of me with my family and friends during my recovery. The one photo on the wall in my hospital room that got the most attention from those visiting and caring for me was of Rhonda and me taken about fifty years ago. We both looked like most young people did then. We were even asked, “Who are those people?” You can see it on this blog under photos. [I was not able to figure out how to post it there. The photo is on my Facebook page.]  I was so glad to have those pictures near me. Reading through those pages and looking at the photos brought back memories. I had forgotten many of the details of my hospital stays. I even felt that we should have taken more photos of me during my recovery, but that was not on my mind at the time.

I thought about all I forgot as well. It was not just the “lost week” when I was taken to the intensive care unit, and put on dialysis when my kidneys failed. All I recall of that week was lying in my bed in my isolation room with the doctors and nurses around me and the next recollection I have is once again lying in my bed in my hospital room, not knowing that seven days had passed. I don’t mind that I forgot that week. I wish I could forget the week when I was given chemotherapy. I have delivered many sermons about the importance of memory and how we must recall the past. Historical events can be erased from consciousness. We, as Jews, know the consequences of the world forgetting the Holocaust. Historical memory is crucial to understanding the past and how to act in the present.

However some forgetting may be good on a personal level, according to an article in the New York Times, Scientists Identity Neurons That Help the Brain Forget by Knvuk Sheikh. It was based on recent studies of the human brain and stated that, “The ability to forget…was just as vital as the ability to remember.” We get so much information each day that we cannot deal with it all. One scientist, Dr. Ronald Davis, said, “If the memory is really important to the organism, then this attention or emotional interest will come in and act like a judge, telling the brain, ‘Keep this one, protect it.’” The article points out that we are far from the day when “traumatic memories can be erased and sunny ones are easier to recall.” That is only possible, the reporter concludes, in movies like, “Eternal Sunshine of the Spotless Mind,” What I found fascinating is how I have forgotten some of the worst memories of my hospital stays. I recall the great kindness of the doctors, nurses, physical therapists and all of those who cared for me as well as the positive disposition of the woman who cleaned my room each morning and the young man who took my meal orders. That is all for the good. And, oh yes, as for that movie mentioned in the article, I went to the internet and read the plot summary. In an ironic twist, I could not remember whether or not I had seen it! But after looking at a synopsis. I realized I did watch it not long after I was discharged from the hospital. It was about a doctor who could erase your recollection of certain past events. I guess seeing it was not one of my sunniest memories.

February 17, 2020

Two weeks ago I had my every other month visit to Mt. Sinai. I was very pleased to learn that I am progressing as I should. I can be a bit more liberal with eating certain foods. Pastrami is now on the approved list! My taste buds are a slight bit different, but I look forward to eating a deli sandwich soon. My blood counts are about the same as last time and that is good. I have gained a few pounds but I am still lighter than I was before the transplant. Dr. Keyzner said it was a positive sign since the body will not gain weight until it is closer to becoming normal. I received three immunizations, but still have more to come. One of the best parts of the visit was feeling it was “old home week.” In the hallway we saw several of the nurse practitioners who have guided us through the past year and a half. One is pregnant and another had a baby some months ago. That is in addition to two other of our doctors’ nurses who had babies not long after I began going to Mt. Sinai. Signs of life are a welcome matter at the Cancer Treatment Center. We ran into my social worker as well as the friendly man who makes our appointments. They were all pleased to see my progress. We will be continuing our every other month schedule at Mt. Sinai.

There is even more good news, our son Gabe is now engaged to Dr. Marina Arutyunyan. Rhonda and I are thrilled. You may have met her at the Gala at the synagogue where when I was honored a year and a half ago. They are getting married in New York in April. After the wedding they will honeymoon in Italy and Israel.

I have drafted two letters to Congressman Gottheimer in my role as an Ambassador for Be the Match. One thanks him for his support of legislation that protects access to bone marrow transplants for all patients. When I was first diagnosed with myelofibrosis, Medicare did not have a clear policy whether or not it would fund bone marrow transplants. Fortunately that has changed. I also have a letter for the Congressman about pending legislation to continue funding research looking for treatments for blood cancers. I hope to deliver the letters in person during the Congressional break. I am still working on the publicity for the bone marrow registry event at the Fair Lawn Jewish Center/Congregation B’nai Israel, Sunday morning, March 1st from 8:30 AM to 10:30 AM. If you are under the age of 45, please come to have your cheek swabbed, be added to the list of potential bone marrow donors and possibly save a life.

All else is calm. I am continuing to exercise three or four times a week at the local Retro Fitness, spending an hour on the treadmill each time. I have watched three of the four seasons of the old HBO series The Wire now on Amazon Prime. I teach my Tuesday class at the synagogue and work on the New York Times crossword puzzle. They become increasingly difficult as the week goes by. The ones on Monday and Tuesday are easy, Wednesday is a bit challenging and for the rest of the week, I have a “Roth rule.”  If I am stuck, “Auto check” putting a red line through an incorrect letter when doing the puzzle on your iPad, is perfectly acceptable from Wednesday to Sunday. Why not?

January 23, 2020

It has been a long time since I have added to this blog. The good news is that there is no news on the health front. I will be seeing my transplant surgeon, Dr. Keyzner, in two weeks for the first of our visits on the new once every other month schedule. I have been fighting a cold but it is mostly gone. Again, good news – I can fight off a cold even if it takes some time.

What have I been doing? I have found two volunteer opportunities. I am working with Be The Match, the registry for bone marrow donors. I was on that list for three years and there were no perfect matches for me. I recall when Rhonda and I were in at the orientation session for those having a bone marrow transplant at Mt. Sinai. There was another couple sitting across the table. We were chatting and I mentioned that I did not have a perfect match. The woman across the table awaiting a bone marrow transplant said that Be the Match found 66 perfect matches for her. As you know, I had a haploid, half, match with my son, Gabe. While that was successful, my odds of survival would have been much better had there been a perfect ten out of ten match for me. I want to help others find the best match possible. So with Be The Match I am organizing an opportunity for people in our community to swab their cheek and be listed as a possible donor. That will be at the Fair Lawn Jewish Center/Congregation B’nai Israel on Sunday, March 1 from 8:30am to 10:30am on the same morning of the 5K Purim Fun Run.  I am hoping that not only will some of the runners register, but that that parents who are dropping off their children for Religious School, as well as others in the community, will be willing to swab their cheek and possibly save a life. The preference is for donors under the age of 45. Even if you are older, please convince your friends, family members and neighbors to help save a life. I have also volunteered to help Be The Match as an ambassador advocate to educate lawmakers about the importance of ensuring all patients have access to lifesaving cellular therapy and other issues critical to bone marrow transplant patients.

As an Ambassador I will be on monthly conference calls about current proposed legislation. However, this month it was scheduled for the same time as my other volunteer work. I was recently appointed to the Fair Lawn Borough Human Relations Commission. I have so few commitments on my calendar now but sure enough the first meeting of that Commission coincided with the conference call. I went to the Fair Lawn meeting and was able to listen to a recording of the call a few days later.

At the Commission meeting we discussed ways to increase inter-group understanding and create a more harmonious and unified Fair Lawn. We introduced ourselves and started brain storming ideas for programs. I will keep you informed as the committee’s work continues.

December 5

On Thanksgiving weekend I thought of so much I am thankful for – the support of my family, my community, and all those dedicated health care workers who cared for me and continue to keep me healthy. We were able to celebrate at Rhonda’s cousin’s home, just as we have since we moved to Fair Lawn, with the exception of last year. It was one more sign of my return to normal life.

There is little to report on the health care side. I had my monthly visit with Dr. Keyzner this week. My platelet and hemoglobin numbers are below the normal range, but not so low that I need any medication or transfusions. It is the “new normal” and I can live very well if those numbers remain steady. I was supposed to continue my vaccinations this week. I lost all of my immunities during the transplant process and a few months ago I began receiving new vaccines. However, I came down with a cold so the five injections will be postponed until next month. Then Dr. Keyzner announced that I am now ready to go on a new schedule – seeing her once every two months. It is both a relief to hear that but also a bit worrying. She reassured us that we can call at any time if there is a need. It is almost hard to believe that just a year ago we were at the clinic three times a week.

Before 1990 when I was diagnosed with essential thrombocythemia, an abnormally high platelet count and the precursor to myleofibrosis, I was a regular blood donor. I would always look to the side and close one eye when they would place the needle in my arm, I continued to do the same innumerable times when my blood was taken over the past few years. I can’t wait for the reassuring “click” that signals the removal of the needle from my arm. I don’t like to see anything bloody on television, or in the movies. I close my eyes even when someone is shown getting an injection. No, I have not gotten over that despite the number of times, around 200, I have had my blood taken, and through all the transfusions. That is just one of the many reasons I did not consider medicine as a career.

Rhonda celebrated a special birthday recently and Gabe came up with a plan to fly Deena in for the event.  When Rhonda saw Deena at our door, she was literally speechless. Later that Sunday we had a surprise party for Rhonda with her oldest friends, the most recent one she met over forty years ago. It was a wonderful event.

Several members of my congregation have joined the increasing number of those who take a vacation to Nashville. I have been asked for advice and was happy to give my take on the sights to see, although that the city has gone through some significant changes since we left in 2007. I also have shared my special “Nashville Jewish Trivia” with those who were interested. After all, who knows the name of the most famous Jewish Nashvillian? Dinah Shore, of course. If you want more of such trivia, such as finding out why the most commonly owned Jewish book in America is named after a Nashville landmark, send me an email, at rabbiron@aol.com and I will send you the rest of the questions and answers.

I am now starting to think more about my retirement. About five years ago I attended a two day conference organized by the Rabbinical Assembly for Rabbis approaching retirement. We heard from financial advisers, someone who works for Social Security, and several Rabbis to engage us to think about what it means to retire. Of course, the day after the seminar I ordered all three books that were recommended at the seminar. I read them at that time, but as I approached the transplant I put that out of my mind. I was not sure I would have a retirement. Now I am starting to consider what I want to do. I recall several of my friends saying to me, “You have interests so you will keep yourself busy.” I am working on it. I am looking at the photos on my computer and will put together a new book of family photos. When the weather is warm I can start going on the walking tours of New York in a book I recently purchased that focuses on the new buildings in the city.

I attended a support group at Mt. Sinai for patients who have had a bone marrow transplant. I felt very lucky and thankful not to have had the serious side effects that I heard about at the meeting. When Rhonda hears me say that she usually responds with, “Lucky is not having been diagnosed with blood cancer.” As usual, I agree with her wisdom.

November 7

My return to normal life continues. I began teaching my Tuesday morning class, Nosh and Knowledge, at the Fair Lawn Jewish Center/Congregation B’nai Israel. When I first arrived at the synagogue we began studying the Torah from the beginning of the Book of Genesis, slowly going verse by verse. Now, twelve years later we have finished four and a half of the five Books of the Torah. We are continuing our studies from the middle of the Book of Deuteronomy. Anyone reading this who would like to join us, consider yourself invited. Bagels and beverages are provided and we start at 11:30 am.

Normal has meant that I have been attending Shabbat services at FLJC/CBI regularly, going back to my local internist for my yearly physical, attending a Broadway show, Oklahoma!, and joining Retro Fitness to exercise indoors as the weather has become colder. I had my now monthly visit to my transplant surgeon, Dr. Keyzner, this week. All looks good with some minor matters that will need some follow up.

I was asked to deliver the d’var Torah at the FLJC/CBI recently on a Shabbat when Rabbi Shargel was out of town. I want to thank her for allowing me that opportunity. I spoke about the Torah portion Noah. Here is a brief summary of my sermon.

The Biblical text as well as the midrash notices Noah’s reluctance to leave the ark after the flood and even after he sees that the land is dry. Why didn’t he just disembark? One ancient scholar, Rabbi Yehuda ben Ilai said that had he been there he would have broken down the doors of the Ark to leave. I suppose he was thinking about being cooped up for so long, not to mention the smell. Why didn’t Noah just leave? One commentary says that Noah was afraid of the uncertainty that the future would bring. It was easier after riding out the flood in the ark to just stay put. It can be unnerving to move forward in life and make decisions. Maybe some of those choices would lead to negative consequences. The Bible tells us that Noah did not leave the ark until God specifically told him to go. We all face uncertainties in life but we can’t wait for God to speak to us and give us directions.

During the last year and a half, I faced many uncertainties. I had to decide whether or not to have the bone marrow transplant. I was faced with a very slow recovery not knowing how it would go, or if I would succumb to complications. How does one live facing an uncertain future? What sustained me? I thought of the 23^rd Psalm. There we read, “Even if I walk through the valley of the shadow of death, I will not fear evil, for You are with me.” The psalmist was able to move forward in a perilous place because he knew he was not alone, God was with him. I felt that my faith accompanied me and I was not alone because I had my family, the medical professionals, my friends, my congregation, and my community all with me. I thought of the mitzvoth, good deeds, I have done in my life. Those actions enriched me and gave me the fortitude to move on, knowing I had an effect on many others and created bonds to the long history of the Jewish people.

Life is full of uncertainties, from the ridiculous, should I buy this cantaloupe, even if I am unsure if it will ripen and be tasty, to the more significant ones, what job should I take, where should I live? I learned that lesson very clearly this past year and I now look to the future.

High Holiday Reflections 5780 – 2019

After leading services for over forty years on the bimah, this year I sat with the congregation during the Yamim Noraim (Days of Awe/High Holidays), at the Fair Lawn Jewish Center/Cong. B’nai Israel. It was a different perspective and spiritual experience. Here are some of my thoughts as I look back on the recent Holy Days.

This year I was honored with the third Aliyah on the second day of Rosh Hashanah. The Torah reading for that day contains the Akedat Yitzak, the binding of Isaac, when God commanded Abraham to sacrifice Isaac, his son. In the portion for my Aliyah, we read that when Abraham is to about to take his son’s life “A messenger of the Lord called to him from heaven [and says] do not raise your hand against the boy, or do anything to him.” A young boy is saved right before he may have died at the hands of his father by a divine messenger.

Just a little over a year ago my doctors administered chemotherapy as part of my bone marrow transplant, killing off all of my own bone marrow and leaving me literally close to death, with no immune system and no way to produce my own blood. Then I was saved with the infusion of the bone marrow from my son, Gabe. This year when I completed the blessings after the Aliyah was read, I turned to the gomel blessing, a special blessing, and let me quote from the Machzor Lev Shalem, “This b’rakhah is recited by one who has recovered from a serious illness or survived a life-threatening crisis.”  It thanks God who “bestows goodness on us despite our imperfections and who has treated me so favorably.” The congregation responds, “May the One who has shown such favor to you continue to bestow all that is good upon you.”  Reading those words made me quite emotional as I thought of all the goodness that I received during the past year, from my family, my medical team, and all the prayers said on my behalf.

When I returned to my seat, my son, Gabe—Gabriel—asked me which angel stopped the hand of Abraham. He mentioned that the Bible in an earlier passage tells of three angels who visit Abraham. While they have no names in the Torah they are called Michael, Raphael and Gabriel in Rabbinic commentaries. Was Gabriel the angel that saved a life in the reading we had just heard? I started to look that up after the holiday. I was home without all of the books I left in the synagogue but, with the help of my friend and colleague Rabbi Lee Paskind, I learned that some Jewish sources give that angel a name. It is Michael in one commentary and Metatron in another. No matter. For me, there is only one name for that lifesaving angel and it is Gabriel, my son and the donor for my bone marrow transplant.

This year I also thought of the first time I led High Holiday services when I was a student at the Jewish Theological Seminary. It was in my next to last year before I was ordained. I did not go to a small congregation or lead an overflow service, as did many of my classmates. I chose to lead services at Memorial Sloan Kettering Hospital. It was a sobering experience to be with so many patients battling cancer. I recall an abbreviated service in a room where the patients came in wheel chairs, praying with them and blowing the shofar for them. There were many who I visited in their rooms, and the family members I tried to comfort. Then a year ago I was in Mt. Sinai Hospital during my last year as a pulpit Rabbi, a patient in an isolation room for those with blood cancer. The beginning and end of my professional life were book ended by cancer wards. It is a reminder to me, as is the liturgy of these Holy Days that we live with vulnerability and unpredictability. The prayer Unetanah Tokef, proclaims in memorable words that we don’t know who will live and who will die each year. Yet there is some cause for hope because, as the prayer reminds us, the quality of our life, no matter what its length, is within our power to live with meaning. Specifically the prayer says that we should live with t’shuvah, tefillah, and  tzedakah,  with a turning toward our better selves, with a regular connection to the Divine, and with acts of kindness. Between those Holy days that I spent on two cancer wards, one as student Rabbi and one as patient, I hope that I have been equal to the task of living a life with those values

I want to end with one other Holiday experience. A year ago on Yom Kippur at Mt. Sinai Medical Center, I was in bed recovering from the transplant when the Delirium Team came into my room. I understand that there is a need to assess a patient’s mental state. Chemo brain is real, as well as all the other disorienting effects of a long hospital stay. However I hope that at some point they rename that group, for “Delirium” is just not the right word. During some of their visits earlier in my hospital stay I had not done well with their questions. I barely knew the date and for some reason when I was asked which hospital I was in, I twice responded, “NYU.” This time, however, I knew I was in Mt. Sinai and when they asked me the date, I replied, “the tenth of Tishri 5779.” Sometimes we really know where we are and what the date is, and for me it was also a step on my return to health, a path I continue to be on as I look forward to celebrating many Holy Days in the future with my family and community.

 

September 23

The news continues to be positive from my doctors. My blood counts are steady. We will not need to go to Mt. Sinai each week for a blood test. We will only have that done once a month when we see Dr. Keyzner, our transplant surgeon. As she said, we are no longer in the survival mode, we are in the keep healthy mode.

 

Last year when the High Holidays approached I envisioned what it would be like as an inpatient at Mt. Sinai. I brought my Machzor to the hospital and thought of how I would sit, pray and meditate during that holy time. I was of course totally mistaken. I had not thought of the hustle and bustle of the daily routine with doctors, nurses and other medical professionals coming in and out of my room all day long. Nor did I figure that I would not be able to concentrate very well. Now I look forward to spending the holidays at the Fair Lawn Jewish Center/Congregation B’nai Israel with my community. For the first time in over 40 years, I will be able to sit with Rhonda as a member of the congregation.

 

I am also looking forward to a Shabbat service in October. Last year I marked my seventieth birthday while still a patient at Mt. Sinai. Rhonda, somehow, was able to come up with a cake I was permitted eat. This year my birthday will be our Sisterhood’s annual Pink Shabbat. That is when Breast Cancer Awareness month is recognized and synagogue members who are survivors of breast or ovarian cancer participate in the service. For me it will be so gratifying to be in the presence of those other cancer survivors.

 

Last week I watched on my computer a daylong meeting held in Hyattsville, Maryland, hosted by the MPN Foundation, the main organization that sponsors research and educational work for those diagnosed with my type of blood cancer and two other related ones. The purpose was to give an opportunity for patients with those three illnesses to “…stand in front of decision-makers including FDA regulators, academic researchers, and biopharma representatives to convey the challenges that ET, PV, and MF [the three diseases collectively known as MPNs: myeloproliferative neoplasms] patients face every day.”  As of now, there are no drugs that cure them; just a few expensive drugs can alleviate symptoms for some patients.

 

I had several major takeaways. First I hope that the FDA would promote research to find drugs that will be able to stop the progression of MPNs and eventually reverse that progression. In my case, I had ET for 25 years before it became MF. PV can also progress to MF. I would like to imagine a future when a bone marrow transplant would be the iron lung of the MPN world. Let me explain. At one time doctors had to place patients, often those with polio, who could no longer breathe on their own into a large metal tube with a mechanism inside that would allow their lungs to function. It was a clunky and difficult way to treat a disease. It is now obsolete because of new and better treatments. If only bone marrow transplants could become so outmoded!  What struck me as well were the stories that the patients told of their experiences. So many of them with ET, PV or MF have that can be debilitating. Many could no longer work and faced days with fatigue and pain. Some could alleviate their symptoms with drugs that are currently available. Some were on clinical trials. I thanked God that I was lucky enough to be symptom-free for over 25 years. I was also fortunate that I was one of the five per cent of MF patients who are healthy enough to be eligible for a bone marrow transplant. As I used to say, aside from the cancer I am a pretty healthy guy! I recall the many times Dr. Hoffman recited a long list of symptoms, asking me if I had night sweats, itching, fatigue, bone pain and other ills. I simply said no to each of them. I thought of that as I listened in awe to the patients who had to suffer those symptoms. What strength and courage they showed living with such disruptions in their lives and with so much discomfort.

 

One of the tests I have had several times this past year is called the chimerism test. A chimera is a figure from Greek mythology made up of the parts of different animals. For bone marrow transplant patients, that test determines the degree that the recipient’s bone marrow and blood is still his or her own and how much is from the donor, making him or her into a chimera. That result is expressed as a percentage. The test results at the end of my hospital stay and the most recent one both indicate that my bone marrow and blood is 100% Gabe’s, making me a chimera. I thought of that when I recently read an article written by Laura Landro, a reporter for the Wall Street Journal.  She is a survivor of leukemia who was saved with a transplant of her brother’s bone marrow. She points out that she is a chimera, and that mythic creature not only was a mixture of different animals but was also a fire-breathing monster. Thinking about the possibility of her cancer reappearing she writes, “I kind of like that fire-breathing image as a symbol for being prepared to battle any cancer that returns or emerges. I don’t dwell on that possibility, but I know I can deal with it if it comes to pass. And I am fiercely grateful for the designation that all cancer patients want: long term survivor.” I, too, think of being a long term survivor, but for now I look forward to be written in this year’s Sefer Hahayim, the Book of Life.

Rhonda and I wish all of you a truly sweet and good New Year.

 

 

 

August 29

It has been another calm few weeks. Last week I went to Mt. Sinai to see the nephrologist. Since my kidneys failed for a week shortly after the transplant last year, I need to follow up. All was good and I don’t need to see her for about nine months. She was very pleased to see how good I look. I have noticed that many people, including doctors, don’t know what to expect when they see me. When someone says to me, “You look great” I simply reply “I get that a lot.”

I continue to exercise in Saddle River Park. I am up to between fifty and sixty minutes. covering close to four miles, three or four times a week.

I had another bone marrow biopsy on Wednesday. My new theory on that procedure is, if they offer a Percocet to alleviate the pain, take it! In fact it was not as painful as some of the previous ones.  Also scheduled this week is a special blood test to see how well my immune system is functioning. The result of that test will help the doctor decide how quickly I can resume a more normal life, such as being around others. Since I lost all the immunities I had from specific diseases, I am continuing to be immunized against various illnesses. This will take at least a year or more. The measles, mumps and Rubella vaccine has to wait for another year. Dr. Keyzner is so pleased with my recovery that she told me she does not need to see me for a month. I may feel more comfortable with more frequent visits, but this is good. I also got the OK to attend some of the High Holiday services at the FLJC/CBI.

This week I went to the Great Falls in Paterson with my friend, fellow retired Rabbi and photographer Jonathan Woll.  I took 251 shots. I want to stretch my photographic skills (the next two sentences uses photographic jargon so you can skip them if you want). I only used manual settings and took all the photos in raw. I am editing them in Photoshop Elements, and my next challenge is to figure out how to use layers.

This week marks one year since the transplant, or as they say at the hospital, day 365. I have been reminiscing about all that has transpired during the last twelve months.  Rhonda and I looked at many of the photos she has on her phone. There I am before I went to the barber to have my hair cut off, and there I am when I returned. There are photos of me in my isolation room at Mt. Sinai when I was bald, my first walk in the park, and the how I looked when I was swollen because of the water retention, not a pretty picture. We spoke about the week when my kidneys failed and I went on dialysis in the intensive care unit. It is the “black hole” of my first weeks in the hospital. I have no memory of that week at all. Rhonda tells me I slept for many hours, thought I was in the NYU Hospital and when her cousin came to visit and played a Barbara Cook song on her phone, I cried. I recall the physical discomfort of the chemotherapy and the psychological pain of not knowing if the transplant had taken. There was a time when my hands shook as I tried to eat dinner. Fortunately that was just a temporary symptom caused by one of my medications.  I also don’t recall exactly what my daily routine was like the first months I was at home, sleeping on a bed downstairs in the living room. The oatmeal for breakfast was good and I watched many episodes of Shark Tank. I do recall clearly the great care I received from all of those at the hospital, from the woman who cleaned the room every morning to the doctors who came in every day. The nursing staff was phenomenal with their care for me. I especially recall the kindness of one doctor who stopped by late in the afternoon for a second visit that day. She looked at the photos we had pasted to the wall to make the room look more homey. In addition to pictures of our children there was a shot of Rhonda and me taken some fifty years ago. Our hair was longer, we looked younger and we were dressed like most young people in the 1960s. You can use your imagination to picture what that looked like.  We smiled and laughed with the doctor when we looked at it and at the photos of Gabe and Deena. She had no medical reason to return to my room but she knew that her presence truly helped make us feel so much better.

Last Sunday I watched CBS Sunday Morning while eating pancakes after a walk in Saddle River Park. There was a segment about a three year old boy named Quinn whose treatment for cancer included a bone marrow transplant. The reporter explained that for several months he could not leave his home or be around other people. Hearing that I could feel tears beginning to form in my eyes. It was hard enough for me to be isolated. I could not imagine what it is was like for a three year old. Then the reporter spoke about how his family, his friends, his neighbors and strangers started showing up outside his window on the front lawn to entertain Quinn and make him smile. The police came by with lights flashing, neighbors performed what the reporter called “stupid human tricks,” a dog parade passed by and Irish step dancers tapped and twirled.  What a reminder of the caring and the good that is so widespread in the world. I thought of all the concern I felt from all the members of the medical team at Mt. Sinai, and from your prayers, emails and cards. We can succumb to despair when we see all the evil in the world and all the horrible diseases that strike so many people. Sometimes while watching the evening news I say to myself, isn’t there any good news that transpired today? Yet as we all know and as I have felt, the good outnumbers the bad in this world by a large margin. This last year has taught me that lesson many times over.