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.

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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.

 

December 20

 

I just returned home on Wednesday from an unexpected admission to Mt. Sinai. I was diagnosed with a virus a few weeks ago.  I had an x ray, a  CAT scan, and then an echo cardiogram. Last Friday my doctor noticed some fluid around my heart and admitted me to the hospital to watch me carefully. After several days and another echo cardiogram the cardiologists decided that the fluid was most likely from the virus, and it was not necessary to try to remove it and test it. I was discharged after five nights in the hospital. I will follow up with a cardiologist and have some more tests in the next few weeks but I don’t feel there is much cause for concern.

I was on the cardio and kosher diet so once again I had more than my share of tilapia for lunch at the hospital.  In fact, since I was not on the bone marrow transplant floor I did not even have a choice of meals. The tilapia just showed up every day.

I am still just waiting out the virus to leave my system. I have no control over it but I think that it is weakening a bit. Other than that I have been watching the first five episodes of the new season of The Marvelous Mrs. Maisel. Not only do I enjoy the plot and the characters, but it reminds my of my childhood in the 1950s in Brooklyn. I have started to read one of the books that the our Social Action Committee gave me, Anne Lamott’s Almost Everything, Notes on Hope. I want to thank the Committtee and the congregation for the gift of several books and yummy packages of snacks that are on my special diet.

Some good news/bad news. Hair is beginning to appear on my face, above and below my lips and on my chin and cheeks. That is good to know that the effects of the chemotherapy are diminishing but the bad news is that I have to start shaving again for the first time in four months. Also my taste buds are beginning to lose some of the metallic flavor that is also a result of the chemo. Finally Stella D’oro cookies are actually tasting more like Stella D’oro cookies! Now that is progress!

November 29

I had an appointment with my doctor yesterday. We have reached a milestone, day plus 90– that is 90 days since the infusion of the bone marrow last August. It is a time to assess my healing and to have another bone marrow biopsy. I knew it was going to happen; I just didn’t realize that the doctor would ask me if I wanted to have it done then. Why wait, I said to myself, and at least that painful procedure, my fourth one, is out of the way. We will get the results soon. The doctor said to us that three months after the infusion patients would like to see more progress in their healing, but we need to be patient because the healing will proceed slowly on its own pace. On the positive side, my daily number of pills has been reduced from 20 to 17. As of now I have not shown any signs of GVHD, Graft Versus Host Disease (the body fighting against the transplant). That can still appear but so far, as they say, so good. I have been coughing lately and a nasal swab revealed that I have a virus. The doctor called today to let me know those results and did not seem too concerned.

A few weeks ago, I had some minor bleeding. The doctors are very cautious and I spent two nights back at Mt. Sinai. The issue was quickly resolved but it was a little like old home week as I got to see some of the nurses and other medical staff I got to know from my stay there August-October. I would also add that if I never see another piece of broiled tilapia again I will be fine. That was the one reliably tasty kosher lunch and I have consumed it more times than I can recall.

I am feeling stronger and more agile. Two weeks ago, Rhonda was out of the house running an errand and I was working with the physical therapist. When she came back she was surprised because neither I nor the physical therapist were downstairs. Surprise! We were upstairs! I was able to climb the stairs using a cane on one side and holding onto the banister on the other. While it will take some time for me to climb the stairs on my own without someone behind me, this was a great accomplishment. I have walked upstairs two more times! I can now walk around the house without the walker. I was reluctant to get a cane, but I know it makes a great difference for climbing the stairs. I use the walker still at Mt. Sinai because the waiting rooms and hallways are very crowded and I feel more confident with it and people hold doors open for me. I don’t understand why those doors are so heavy.

I just finished reading a book that a friend gave to me, The President Is Missing.  I asked him hopefully if it was nonfiction. It is fiction, though, a thriller written by Bill Clinton and James Patterson and I do recommend it.

November 8

It has been two and a half weeks since I have been home. I was a bit nervous about leaving the hospital with so many medical professionals caring for me, but it is wonderful being back in Fair Lawn.

Psychologically – what a relief to be at home. Someone sent me an e mail saying that it must be a great to sleep in your own bed again. Actually I am sleeping on a bed that we had brought down to the living room because I can’t climb stairs yet. But it is great to sit at a table for all of my meals and eat with metal utensils. Not only that – the meals don’t come double wrapped in plastic from the Mt. Sinai kosher kitchen! I can enjoy real home cooking and Rhonda is a great cook. I am gaining back some of the twenty pounds I lost at the hospital. I read, follow the news (when I can do so calmly which is not all the time) listen to music, watch sports on television and I have become a great fan of the series Shark Tank. I enjoy listening to those practical and occasionally zany entrepreneurs and their innovations. Too bad the Kosher soup ladies did not get backing. 

We go to the clinic at Mt. Sinai at this point three times a week. We were not sure what those appointments would be like and we soon found out that they are quite lengthy. After taking a blood sample, it takes two hours to complete the blood chemistry and decide how to treat me. That usually means some type of infusion or transfusion. It may be an infusion of a saline solution. They want to be sure that my kidneys are functioning well given the fact that they failed for a few days in September. I may have a platelet or blood transfusion as well. It takes some time to go to the treatment room and set it all up. Our appointments at Mt. Sinai usually last five or six hours or more.

On Tuesday and Thursday, the physical therapist comes to our home. It is as they say, slow and steady. I still use the walker and so far can manage only two stair steps.

The healing continues slowly. We see our doctor once a week and the nurse practictioners on the other days we are at the clinic. 

While I was waiting the other day at Mt. Sinai, Michael Cohen, a very friendly man who all the patients know because he schedules our appointments, looked at me. Seeing that I was a wearing a knit hat, and knowing why, he said to me, “We have the same hair cut!” He chooses to shave his head which I understand is quite popular today. I took off my hat and said, “Yes we do!”

Update Oct. 28

I will resume my blog about my health next week. For now, let me simply say that I have been discharged from the hospital and have been at home since this past Monday. I go back to Mt. Sinai three times a week for treatment and I am starting physical therapy at home this week.

For now, I’d like to concentrate on something on all of our minds. Our hearts go out to the families of the victims of the horrific attack at the Tree of Life Synagogue on Shabbat. We pray that their memories will be for a blessing.

We live in a time when hatred and anti-Semitism are increasing. I do, however, want to make a comment about our nation based upon my long stay in room 221 of the hematology/oncology unit at Mt. Sinai. I could not have had better care from all the members of my medical team. It was not just their professional knowledge and skill, it was the deep concern for taking care of my needs. From the highly trained doctors to those who took my meal orders, each person exhibited compassion, concern and kindness. They were a diverse group and in my mind their diversity was a demonstration of what this country stands for – the opposite of what we witnessed last week in the killings in Pittsburgh, the mail bombs, the murders of two African Americans in Kentucky. Those who cared for me were from so many different backgrounds. One of my favorite nurses was a hijab wearing Muslim. Another was born in Japan and would often bow slightly as she said hello or goodbye—and always made a point of calling me Rabbi Roth. Others came from the West Indies, Guyana, and some were descendants of those brought to this country on slave ships. My doctors were a diverse group as well. My main doctor was born in Russia, and others were from India, South America, and a visiting doctor was from Egypt. It was not just a United Nations of care givers, it was a reminder of a basic value of our nation that I fear is being lost. There is a core value that defines our county: tolerance for people of all backgrounds and welcoming the newcomer. When the Czar decided in 1891 to throw the Jews out of Moscow, my great grandfather’s family came to America with nothing in their pockets and lived in a cramped tenement on the Lower East Side. They and their descendants became contributing members of society.

We can debate what our national policies should be. However in that discussion, as in much political discourse today, we hear hatred, falsehoods and rhetoric that encourages extremists and the rise of anti-Semitism in place of a commitment to the values of tolerance, democracy, free speech, civility–all the values that have made America the great nation that it is. I long for more inclusive words from our leaders and a recognition of the infinite worth of every human being, a value that the Torah brought to humanity. Then, perhaps, our nation can begin to heal.

Update Oct. 21

If Dr. Keyzner is happy, everybody is happy—and Dr. Keyzner says she’s happy. Ron’s primary transplant doctor says that there are positive signs of his improvement and that she thinks she can manage the next phase of his recovery on an outpatient basis from home. The “when” he can go home decision will be considered on a day-to-day basis, but we are hoping that Ron will be home very soon.

Please, please, please understand that Ron is still quite debilitated and has a long way to go in this process, both in terms of the viability of the transplant and his physical condition. (Fortunately, his mental acuity is back. This week he did the Monday, Tuesday and Wednesday NYTimes crossword and spent hours on the phone dealing with a Medicare issue.) Our other favorite doctor, Ron’s hematologist/oncologist Dr. Hoffman, says that a patient has to get through the first 100 days before doctors can get a sense of where all of this is going. Today is day 51.

When Ron comes home, we will have to go to the clinic at Mt. Sinai (where he went every week for over three years before undergoing the transplant) three days a week so that he may be closely monitored and treated. The logistics of that are second only to a moon landing. In addition, we will have a visiting nurse, a home health aide and a physical therapist visit our home (he’s just beginning to be able to do steps). The daily medication regimen is beyond complex—that’s probably a subject for an entire message. And Ron will have to rely solely on my cooking. I’ve memorized lists of dos and don’ts that reflect his low microbial diet. Basically, he cannot have anything fresh or anything that someone else may have touched. Everything has to be processed, pasteurized and packaged for it to possibly be on the list—no “farm to table” for Ron.

It’s very difficult to feel too excited when, on the one hand, the medical team is applauding the progress while on the other hand, they are giving you a book about graft-vs.-host disease and a list of emergency phone numbers. We are all anxious (not in a good way) about this next phase; however, it is what we hoped would happen. We will happily deal with that paradox as we continue to navigate this long and arduous process.

Update Oct. 14

Rhonda here again, filling in for Ron to keep you up to date.

This was a relatively calm week, with the focus on Ron regaining his physical strength. He’s working with the physical therapist, walking further with the walker and building leg strength. He received a good report from the occupational therapist after she ran him through the paces of getting dressed by himself and standing unassisted at the sink. He is still receiving periodic transfusions of red blood cells and platelets, typical at this point in a recovery. He tires easily and naps regularly. With kidney function back to his baseline, the dietitian was able to remove the constraints imposed by the “renal” diet, so he’s a little happier about his food options. And he got to celebrate his 70th birthday on Friday with the medical team singing “happy birthday” during morning rounds and with a chocolate cake with Gabe and me in the afternoon.

 

As for the bigger picture, Ron continues to be in a stable holding pattern. We hope that all of you understand that recovery from a bone marrow transplant for  myelofibrosis is notoriously slow. Our wonderful main transplant doctor, Alla Keyzner, had a spot-on observation that addresses all of this waiting. Chatting one day, she mentioned that the bone marrow transplant team at Mt. Sinai is now equally divided–4 men and 4 women–but traditionally there were a greater number of women on the team. “Why do you think that more women choose bone marrow transplant as a specialty?” Ron asked. 

 

She replied with one word: “Patience.”