July 24

 

It has been some time since I wrote a blog post. One reason I delayed is that my blood counts are stable and I have not needed any medication to boost them for several months. Last week for the first time in four years our doctor said we did not need to go to the clinic at Mt. Sinai, given my improving health. Also last week our close friends from Nashville, Rick and Susan Levy, who retired to Tucson, came to visit. The weather was hot and given the restrictions I still follow we did not do much sightseeing. We visited the Great Falls in Paterson and I was able to take some photos with my camera. (I added one to “My Photography” on this blog.) We also went to the Fair Lawn Jewish Center/Cong. B’nai Israel. They were very impressed with the renovated main sanctuary. Aside from that we basically ate and schmoozed. One morning they joined me on my walk in Saddle River Park. They were surprised to learn that I walk three or four times a week that I walk at a brisk pace and cover about two and a half miles in forty-five minutes.

This week we saw Dr. Keyzner at Mt. Sinai and my blood counts are still stable. However, she looked closely at the skin discoloration on my cheeks. She diagnosed it as GVHD – graft versus host disease. That complication of a bone marrow transplant appears in about 70% of the recipients. It can attack any organ in the body and vary from easily treatable to very serious. I had hoped to be spared this. We have scheduled an appointment with a dermatologist at Mt. Sinai for next week. At this point I am not very worried and I am hoping that there will be a fairly simple treatment. Of courses I looked up every possibility on the internet. Contrary to some of my other internet searches about my disease, I concluded that I need not be too anxious.

Someone asked me recently if faith played a role in my recovery. I answered by mentioning that someone said to me a year ago that I would be cured because I was a “man of faith.” I answered that I simply did not believe that. I have seen people of faith die before their time and others with no faith live to a ripe old age. I don’t believe faith gives anyone immunity from disease nor does it automatically cure someone who is ill. However, faith does have a role in my life, giving me confidence that there is good and meaning in the world, even though it may not seem that way at many times. Faith gives me a positive outlook and yes, I believe it may have a constructive effect on healing. I recall during my initial hospital stay thinking that I did not know if I was going to survive. I knew that my odds of being healed were only about 50%. I said to myself that I have lived a meaningful life of 69 years, more years than is granted to many. Certainly I wanted to live longer, but If I did not I knew that I had so many blessings during those years, a loving wife and children and a career that enabled me to preach, teach and counsel many others, having an effect on their lives. I thought of the long history of the Jewish people and my place in it. That brought me comfort. There are many books about faith in the life of cancer patients and I make a point of reading as many as I can. Each of us has to face a health crisis with our own resources. Typically one faces an illness with the same patterns that one uses in other difficult times. Yes, for me faith was and is part of that pattern and it helps to sustain me.

We are now able to have visitors more frequently. If you would like to stop by, please call first. The same rules still apply – don’t bring flowers or food, and don’t come if you or a member of your family is sick or is just recovering from an illness.

June 12

During these last few weeks we have had uneventful appointments at the Mt. Sinai clinic. My blood counts are stable. I began the immunizations, like polio, against the diseases that I lost because of the transplant. As I was being given the injection with the polio vaccine, the nurse asked me if I remembered taking the oral version when I was a child. Actually I recall taking that vaccine before it was given orally. It was a bit more painful. I also remember my uncle Bert who had a significant limp because he had polio when he was a child.

Here is a conundrum I faced recently. One of the e mails lists I am on contained an article called, “Examining the Link Between High-Risk Mutations and Transplant Outcomes in Myelofibrosis,” by Dr. Raajit Rampal. (Coincidentally, Dr. Rampal of Memorial Sloan Kettering, was the physician I consulted about three years ago for a second opinion.) The article mentions in three separate places that the prognosis for patients with certain mutations in their genes “…correlated with worse outcomes in patients with MF after transplant.” My first reaction was curiosity and concern. Here is my conundrum: Did I want to know if I was less likely to have a positive outcome based on my genes?  I did have a record of the exact mutations in my genes from tests done four years ago.  I recalled that I had some of the mutations commonly found in MF patients and there were some I did not have. That information was stored in my filing cabinet. Should I look it up and find out if I had the gene that meant I might be less likely to survive for five years? Or since I could not do anything about this, should I simply ignore it?

It did not take me long to choose to look it up, even though I could do nothing about it. I had the gene mutation that correlated with worse outcomes. It is not clear how much of a factor for negative outcomes this mutation is and the research in the article was done with two small groups of patients.  I mentioned the article to Dr. Keyzner when we saw her at our clinic appointment. She added that this information might be useful someday in choosing a treatment if there were multiple options. Then you might choose the one that has a greater possibility of success. Today there are no options to cure MF other than a transplant; therefore, this information is not helpful. I will put it in my “file and forget” folder. Whatever my odds are in the future, I know I made the right choice to have the transplant and I am glad I looked up the fact that I had that mutation. For me, wondering if I had it or not would have been worse. Do you think I made the right decision to find out if I had the mutation? What would you have done?

I finally got a haircut last week. Considering that I was bald for about five months, that is an accomplishment. I just received a Fitbit Fitness Tracker. Now I can check my heart rate and the distance I traverse when I exercise. Finally, I asked Dr. Keyzner if I could attend the Fair Lawn Jewish Center/Cong. B’nai Israel Gala celebrating Michael Baer. She said that I could as long as there was no handshaking, no kissing, and no hugging. Also I could not eat the food. If all continues to go well, I hope to see many of you there. I have lost some weight, but you will be able to recognize me – just look for the (surgical) masked man.

May 29

At this point in my recovery, boring is good. Our last few appointments at the clinic have been brief with no surprises. My hemoglobin numbers are up a bit but my platelets are down a little. We will see our doctor next week. The nurse practitioner we saw yesterday told us not to worry about those variations—that’s just the way recovery goes. She contacted our doctor who said I did not need any injections to boost those numbers. An unexciting appointment is what we like. We asked about a slight redness I noticed below my eyes. A rash is often the first sign of a serious side effect, graft versus host disease. Again the nurse looked at it and said that it was not a sign of that illness.

Last week we met with the cardiologist to review the two heart assessments I had a few weeks ago, the echo cardiogram and the stress test. The full results are all good. There were no changes nor is there any concern about my heart. However, I am still on a low sodium diet and I was prescribed a low dose drug, a statin, to help my heart stay healthy. Aside from adding one more pill each day (only a dozen a day at this point), there is an interaction with this drug. I can’t eat grapefruit or drink grapefruit juice. Hearing this someone said to me, “Well it’s not like you drink grapefruit juice every day.” Actually I was drinking my favorite Israeli brand of that juice every morning. Oh well.

I finally went to the dentist two weeks ago. For several months, I was not able to take the best care of my teeth, with flossing and using a water pik prohibited because of my low platelet counts and fear of bleeding and the introduction of bacteria. I have always been proactive with seeing the dentist and caring for my teeth. Dr. Keyzner gave me the go-ahead to get a check-up and cleaning, although I still have to stay away from the water pik. The good news is that I do not need any dental work. That was a great relief. I even drove to the dentist by myself.  I admit, it was less than a mile down the street, but it’s progress.

Rhonda and I exercise regularly, taking walks in Saddle River Park and I continue to feel stronger on those walks. The weather has been cooperative, although a strong breeze almost blew off my Tilley hat a few days ago. I hope we will have more of the same good weather. That is the type of boring that excites me.

May 10

It has been some time since I added to this blog. We had a wonderful seder with a small group of family and friends. We are looking forward now with confidence to many more times of joy and celebration.

The last weeks have been uneventful and that is good. We continue our weekly visits to the clinic at Mt. Sinai. My blood counts are stable, sometimes a little higher, and sometimes a little lower. They are still far below normal, but they are above where they were for several years. Last Tuesday we left the house at 7:30 am. We did not arrive at the clinic until about 9:00am, since there was so much traffic. However we were finished and left Mt. Sinai by 10:30am. My blood counts were stable, and I did not need any medication. We were not scheduled to see our doctor since this week she takes her turn going on rounds in the hospital to check on all the bone marrow transplant patients. We were home a bit past 11:30 and went to Saddle River Park for a walk. This was quite a difference from the three months after I was discharged from my initial hospital stay. During that time we went to the clinic three times a week, arriving in the morning. I had a transfusion during each visit so we were there until rush hour and sometimes after rush hour.

Two weeks ago we were sitting in a waiting area at the Mt. Sinai clinic next to a couple from Rockland County. The husband had a stem cell transplant three months ago. We talked about my progress at the eight month point after the transplant. I think we were helpful to them. I told them about my slow recovery, my three readmissions to the hospital, New Year’s Day in the emergency room and all the complications that I have had. Despite the setbacks, I was living proof that there is progress toward healing, even when it is very slow. It felt good knowing that I could help another patient by speaking of my experience.

Last week I had two tests.  Since the operation to remove fluid from around my heart in March, our cardiologist wanted to follow up with an echo cardiogram and a nuclear stress test. Normally you run on a treadmill for a stress test. I don’t have the stamina for that so there is an alternative. A drug is administrated that makes your heart rate increase as if you were on a treadmill. It was not as bad as I had been warned about. All I felt was my heart beating rapidly. I will get a full report from the cardiologist next week. I understand that if they did find any serious issues they would have contacted me already.

I still have to avoid crowds, large or small, because my immune system remains very weak. This week Rhonda and I went to the synagogue to bring home some of my books. There I met Abe Adler, our new Executive Director and as soon as I walked into the office and he saw me, I am sure he knew the answer to the question “Who is that masked man?” (a question made famous on the television series The Lone Ranger).  I need to wear a surgical mask when I am around others and we keep a supply of them in the car and near our front door. I still have fatigue. Twice in the last week I was watching Law and Order.  All of a sudden someone is on trial, and I have no idea how that character from the first part of the show became the defendant. I had fallen asleep briefly and missed the great reversal that is a common factor in Law and Order. The least likely character turns out to be the true perpetrator of the crime. Those short afternoon naps are usually necessary and are a typical part of my recovery. I know that it will take about a year to recuperate and I just need to be patient. Shabbat Shalom.

April 15

The good news is that I am continuing to feel stronger. Rhonda and I have been taking walks in our neighborhood and in Saddle River Park. I had my last visit from the physical therapist and now I have several pages of exercises to do. I always carry the cane when I go up and down the stairs, but try not to use it. I don’t need to have Rhonda follow me on the steps when I go up nor walk in front of me when I go down. It’s progress. I drove a car for the first time since last August, even though it was just to the next town. I still have a few more tests and specialists to see. There will a chest x ray this week and an echo cardiogram as well as a stress test in a few weeks. Our weekly visits to the clinic at Mt. Sinai continue as my blood counts are monitored and I usually have injections of two medication. The blood counts continue to look good, usually going up, and sometimes with a small dip, even though they are still far from normal.

I finally finished watching the first season of Shtisel on Netflix. It is an Israeli television series about an ultra-Orthodox community in Jerusalem. I recommend it. The family issues in that community are very real.  I also enjoyed the first episode of Fosse/Verdon, a series on FX about the Broadway and film director and choreographer Bob Fosse and the actress Gwen Verdon, one of his several wives. I ordered the book that the series is based on, the biography Fosse.  I will get to it as soon as I finish Becoming, Michelle Obama’s autobiography.

Rhonda has been working hard to prepare the house for Passover. We asked Dr. Keyzner about having a seder. She said that it would be fine with a small group of people who were not sick, so we will have a total of ten for the first night. She said I could drink one glass of wine and three of grape juice. I have avoided alcoholic beverages since last August. We also agreed that it is best that I stay far from Rockland County, not that I have any reason to be there. I lost all my immunities to diseases with the transplant. I have to wait one year to be revaccinated for most of the diseases but since the measles vaccine uses a live virus I need to wait two years and there are many cases of measles in Rockland County. I simply cannot understand why people do not have their children vaccinated.

In the category of getting back to normal, I listened to a webinar led by a JTS professor, Dr. Benjamin Sommer on “Did the Exodus Really Happen?”  That is a great topic for discussion at the Seder. I also listened to two webinars about the Israeli election, one from AIPAC and one from the American Jewish Committee.

Finally, as I prepare for the seder, I started looking at my copy of the Haggadah. I have many notes written in its margins. I recall last year as we were about to finish, next  to the text, “Next Year in Jerusalem,” I wrote “What are your wishes for next year?” It was an emotional moment as I read those words out loud, since it was clear that I was going to have a bone marrow transplant in the next few months. This year I am already thinking about a moment early in the seder when we recite the blessing, shecheyanu, thanking God for “giving us life, sustaining us, and for enabling us to celebrate this festival.”  My handwritten note reads, “Go around the table and ask, ‘How different are you this year?’ ” This year I am so different. I am so appreciative of all of those who kept me alive – thanks to God, to Rhonda for all she has done for me, to Gabe whose bone marrow literally kept me alive, to Deena whose marriage brings me joy, to my friends and all of those who prayed and supported me, and to all the health care providers who cared for me. I am different because now as I look forward with confidence to many more years of joy and fulfillment. I wish to all of you,  chag kasher v’sameach, a truly joyful Passover.

March 31

 

Last week we made two trips to Mt. Sinai and had appointments with four doctors. While we are down to one clinic visit a week to see our main doctor, Dr. Keyzner, we are following up with several specialists. We made one of those visits on Thursday, which also was opening day of the baseball season, a good time for optimism.

There is good news. First, I am feeling better and my cough is almost totally gone. Dr. Keyzner was pleased with the blood test results and remarked on how much better I look.  The pulmonologist had me get a chest x-ray and he said the results showed that the amount of fluid by my lungs has lessened. We will have x-rays again in a few weeks to check that progress. He was not worried that all the fluid was not totally gone. He literally said about trying to remove every drop of the fluid, “The perfect is the enemy of the good.” The nephrologist was pleased that my kidneys are working well and said I should see her in four months. On Thursday when we saw several of the doctors, I was able to walk the few blocks between their offices.

In other positive news, on the advice of Dr. Keyzner the surgeon removed the Hickman catheter from my chest where it has been since August. I have not needed a transfusion for many weeks, so those three long tubes from my chest to my waist are gone. I can now take a shower without having to put them under a plastic patch. We still have some possible hurdles, though. I am at the point in my recovery when graft vs. host disease can appear, but so far so good.

Here is more good news Deena and Aaron got married on March 8^th in Fargo. Given my condition it was difficult for them to make plans, so they went to the Cass county court house, got married and then had a short honeymoon in Duluth, MN on the shores of Lake Superior. We are thrilled for them.

I am hoping that the worst is in the past and that in some months from now I will reach my “new normal.” With the weather getting warmer I changed from my knit hat to my Mets cap when I went to see the doctors this week. Seeing my Mets cap one doctor gave me an update on the opening day game (Cano hit a homer in the first inning) and another quoted the new Mets manager, whose name I had forgotten. I thought of the title of one of my favorite book about baseball, Why Time Begins on Opening Day, by Thomas Boswell. I hope that this year’s opening day of the baseball season will be the harbinger of a new and better time for us, and it wouldn’t hurt if the Mets finally had a great season, would it?

March 10

Rhonda here with the continuing adventures of bone marrow transplant Ron…

Ron spent 10 days as in inpatient at Mt. Sinai (Feb. 26-Mar. 8) to undergo a procedure to eliminate fluid from around his heart, monitor fluid around his lungs and otherwise eliminate fluid throughout his body. Fluid retention due to medication and the viruses he endured earlier this winter has been an ongoing issue. As you know, he had a hospital admission in December to monitor his heart and the fluid in the pericardium. At that point, the doctors considered but declined to do the procedure he now required as symptoms, particularly shortness of breath, worsened. A tube was inserted (removed three days later), fluid drained, and a small window created in the pericardium to inhibit future fluid retention in that area. Simultaneously, Ron’s lungs were under scrutiny, as that area, too, was full of fluid. There were x-rays, CAT-scans, ultrasounds…ultimately, the pulmonologist decided against intervening and Ron was put on diuretics. Since he suffered kidney failure for a time shortly after the transplant, a nephrologist joined the team.

There are so many more details, but I think the above suffices in painting the current picture. We are told that these side effects, while not “typical,” are something the doctors see all the time. Small comfort! But as the cardiologist (not to be confused with the cardio-thoracic surgeon) said, “This is not two steps back; this is just a bump in the road.”

Ron has follow-up appointments with the cardio-thoracic surgeon, the cardiologist and the nephrologist. The pulmonologist said he didn’t have to be added to the list; if needed, Dr. Keyzner, the primary transplant doctor, will find him. Obviously, we’ll be crossing the George Washington Bridge more than usual in the next month or so. Ron will see Dr. Keyzner once a week during one of his twice-a-week clinic days as monitoring of the transplant continues. This bump in the road has not impacted that progress, and for that we are very grateful.

February 18

When the outside temperature was in the high 50s two weeks ago, I was able to do something I had not done since last August. I left the house with Rhonda and we drove to a place other than Mt. Sinai. We went to Saddle River Park and took a walk together. We actually did that two days in a row and also walked down our block on one of the other days when it was warm. I need to increase my stamina and that was a start. I still take a nap every day as my energy ebbs in the afternoon.

As I mentioned in my last blog post we are now going to the clinic at Mt. Sinai two times a week instead of three times. It does make a big difference. The three times a week schedule feels like it takes over your life with little time to relax in between visits. Now we feel that we do have time to ourselves and our lives are not so constantly tied to those trips to Mt. Sinai.

My platelet counts and hemoglobin levels have been rising, but they are still very low by normal standards. I have not needed any transfusions of platelets for over a month and no transfusions of blood for over three weeks. We still have a long way to go to reach my “new normal,” but this is very positive. It will still take many months. I have some side effects of the many medications I take every day. During the next few months some of my medications will be reduced. We will find out how my body reacts to lower doses of immunosuppressant drugs that have prevented it from rejecting the bone marrow from my son Gabe. As these drugs are removed, there is the possibility of a host of negative reactions, but I’m not worrying about that yet.

On the positive, side my eyebrows have returned and I have even had to trim them.  There is more fuzzy hair on my head. That should only continue.

January 31

I recall when Dr. Keyzner told us that after I was discharged from the hospital we would have to come back to the clinic at Mt. Sinai three times a week. I didn’t ask her what those appointments would be like. We have learned that they are quite lengthy. Typically they include waiting, drawing blood, waiting for the result of the blood test, meeting with the nurse practitioner twice a week and the doctor once a week. The majority of the visits also included a transfusion of platelets and/or blood. We learned that they would last at least six hours.  Two weeks ago, Dr. Keyzner looked at my blood counts and the fact that I have not needed a transfusion every visit, so we are now down to two visits a week to the clinic at Mt. Sinai. My blood counts are still quite low by normal standards but they are stabilizing. Soon we hope they will increase.

Last Sunday I noticed a red rash on my back. A rash can be the first sign of GVHD (Graft Versus Host Disease), a potentially very serious condition as the body rejects the foreign cells received during the transplant. So naturally I looked on the internet to see what a GVHD rash would look like. As I did this I thought of the article in the NY Times last week that warned of the dangers of looking up medical advice on the internet. I thought of the day I was diagnosed with myelofibrosis three and a half years ago. One of the internet articles I found that day said that with my disease, my age,  my blood counts and my symptoms, I could expect to live for two or three years. That was a sobering moment, but of course totally inaccurate. What I saw on my back did not look exactly like what Google showed for GVHD rashes. Rhonda was much calmer than I was at that point. However that did not stop me from looking up other symptoms of GVHD and of course I thought the occasional pain in my knees and legs as well as the recurrence of a metallic taste in my mouth were also proof that I had GVHD. Rhonda wasn’t so sure and when we looked at the rash on Monday, she pointed out that it was not as deep a color as those we Googled and it had started to fade. On Tuesday when we showed it to Dr. Keyzner she simply said that it was not GVHD. It was a bruise and that the other symptoms were most likely caused by the medications I was taking. I was quite relieved. So as one of the other medical professionals said to me as he passed us in the waiting room, “Remember, it’s a marathon not a sprint.” I don’t know what mile of the marathon I have passed but I try to keep that advice in mind.

January 13

All of the episodes of the original Law and Order are now available on Tuesday evenings on an obscure channel that is part of my cable package. Were there ever as good a team of detectives as Briscoe and Green? I record and watch a few each week even though I am sure I have seen them all before. It is comforting and familiar to see the plot unfold.  I just have to remember that the obvious suspect is not usually the real perpetrator of the crime, that there will be a “motion to dismiss” the charges and I need to be awake toward the end of the show when a novel legal concept will be used to convict the accused. Last week the plot line included Briscoe and Green’s boss, Lt. Anita Van Buren’s diagnosis of breast cancer. She goes for her first chemo therapy treatment. We see her sitting in a chair with her son opposite her. The camera pans to show the chair next to her. A young girl, about ten years old, with no hair turns to the police officer and calmly says, “I was also nervous my first time.” A simple line that almost brought tears to my eyes. I thought of all the people I have known who have gone through chemotherapy. I thought of all the patients I see three times a week at the Mt. Sinai Cancer Treatment Center. I thought of the chemotherapy I had at the beginning of my treatment. I hope all of us facing cancer can be as calm and confident as the girl on Law and Order.

Now the update. Why should I settle for one virus when I can have two? The metapneumovirus has left my system but it I still retain a nasty cough. I was tested again and I am positive for the RSV virus, a virus one of my doctors said was, “Not my favorite virus.” I missed the opportunity to ask him, “Which virus is your favorite?” RSV is a serious virus and I was put on an antiviral medicine for a week and instead of having an infusion of immunoglobulin once last month as usually happens, I had it three times in one week. The doctors want to be cautious and prevent the virus infections from turning into pneumonia. I am still coughing and that can last for many more weeks. I had my third echocardiogram and that showed no difference from the previous two, so I am not too concerned, although I will see the cardiologist at Mt. Sinai soon.

I have a tendency to get nosebleeds. They are not directly related to my current illness. For twenty five years when I had a high platelet count because I had essential thrombocythemia, the precursor to myelofibrosis, I still had an occasional nosebleed. On New Year’s Day I had a nosebleed that I was not able to control. We called our doctors’ emergency number at Mt Sinai (they always said to us if something does not feel right do not hesitate to call). We were told to go to an emergency room. We decided to go to Mt. Sinai instead of a local hospital. At Mt. Sinai they checked my blood and suggested that I have a platelet transfusion, even though the bleeding had stopped by then. This was decided about three hours after I arrived, because it was a very busy place. Rhonda kept in touch with our main doctor by text message and while it seemed like a good idea to have the transfusion, we were told that the rules of the hospital did not allow for it in the emergency room and that I would have to be transferred to the observation room, and it would take six to eight hours to get the platelets and transfuse them. We decided, with the advice of the emergency room doctor, to go home, since we had our regular appointment the next day. I had the platelet transfusion then.

Last week we even had a short day at the clinic. On Friday I had my regular weekly injections, talked to the nurse practitioner and went home. We hope such relatively short appointments will increase. In general, I’m feeling OK as the healing continues at its slow pace.