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.” 

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Update Oct. 7

Things are progressing, albeit slowly. The transplant surgeon used an interesting example this week. She said Ron’s bone marrow has fibrosis (scaring)–which, of course we know: myelofibrosis is his disease. She likened it to hard soil. If you plant seeds in hard soil, it takes longer for the soil to accept the seeds and for the seeds to grow. That is what’s happening with the transplant. She is cautiously optimistic that it will take–but it will take time. At this point, his white cells are beginning to increase, and that is a good sign. As for his kidneys, they are functioning normally and the number they look at to measure that is now close to normal. Basically, the kidney failure cost Ron two weeks and greater loss of function than he would have had without that trauma. Last week he began being able to sit in a chair for a couple of hours. He then progressed to walking with a walker (with minimal support from the physical therapist). He follows the activity with a nap and then is back to himself.  His concentration is getting better and he is engaging in one of his favorite pastimes—reading—for the first time in many weeks. His appetite is good and he spends a lot of time complaining about the food. He’s seen the nutritionist almost as much as he’s seen the doctors and the chef even visited. The problem is that they are juggling 3 diets–kosher, renal and low microbial.

I’m at the hospital every day, usually from 10:00 a.m. to 5:00 or 6:00 p.m. I’ve been driving in, which takes years from your life under the best circumstances. I am sleeping, though, and I know that’s good. The kids are fine. Gabe is feeling well, with no residual effects from the marrow donation at this point. He is at the hospital several times a week, usually after work for a few hours. Ron really enjoys the visits. Deena and I speak or text every day and she calls her Dad to catch up with him, too. We are all keeping a positive attitude (what else is there?) and looking for bright spots in each day. Certainly the level of caring care (the redundancy is on purpose) makes a huge difference, as do all of your prayers and good wishes.

Update Sept. 23

Well, so much for good intentions. Ron and I thought that between the two of us, we could do regular blog posts. Then reality happened. This entire transplant process is far more all-encompassing than the doctors, books, past patients or anyone else shared—and certainly more than either Ron or I imagined. But Ron is determined that all of you who care so much be in the loop, so here is a brief update.

After about two weeks in the hospital and post the bone marrow transplant, Ron developed an infection in his blood, in addition to enduring all the side effects of chemo. While the infection was being treated, he developed kidney failure, requiring a move to the Medical ICU for dialysis and closer monitoring. Those five days are a blur for both Ron and our family. If any of you have had a family member in the ICU, you know what I’m talking about. As soon as his kidneys showed signs of recovering and the infection was gone, the medical team had Ron moved back to the transplant floor. His kidneys are continuing to recover and there have been no further signs of infection, so all of that is good news. However, with the severity of these side effects, the doctors inform us that we are on a slower schedule regarding engraftment taking place—kind of like a rain delay in a baseball game. The game will continue, just not yet.

While it was difficult to keep our mood upbeat during the ICU stint, being back on the transplant floor has certainly helped. I know Ron has talked about the skill and compassion of those nurses, but I’ll add an “amen” to that. They are helping him, not only by their monitoring and making sure he takes all of his approximately 20 pills a day, but by their positive attitudes and caring demeanor. They help give all of us strength and determination.

We continue to keep visitors to a bare minimum, with Ron’s immune system as diminished as it is. I am there for about 10 hours every day and sometimes even feel useful. (You wouldn’t believe how hard it is to get a challah roll out of its wrapping.) Gabe visits most days for several hours, usually in the evening so I can get home and relax before the dawning of a new day. And Ron’s closest rabbinic friend Neil comes regularly for a brief visit, helping to boost Ron’s spirits. I keep Ron informed about all the emails, texts and calls I receive, asking about him and wishing him well and he is touched and grateful.

Shana Tova

With Rosh Hashanah upon us, I want to take a minute to wish all of you a healthy, happy New Year. While I’ll be skipping the apples and honey this year (no fresh fruit for me), I hope your year is a sweet one, that you are surrounded by the warmth of those you hold dear, and that you find meaning in these High Holidays. As I navigate this difficult path, please know how much your support, prayers and good wishes mean to me and my family. Thank you from the bottom of my heart. Shana tova!

September 4

Your guest blogger, Rhonda Roth

Ron asked that I do the blog honors today, primarily because he felt that the content of the email I sent to family could do double duty. A few tidbits have been added since not a day goes by without something new going on.

Today is “plus 4,” which has nothing to do with the number of guests you may bring to a party. In bone marrow transplant lingo, last Friday, the day of the bone marrow infusion, is called “day 0” and the counting goes up from there. Gabe donated almost 2 liters of bone marrow last Thursday afternoon, with several members of the transplant team in attendance. He was anesthetized for the procedure, which involved two needle punctures in his hip. He is still very sore and a bit uncomfortable (he says he feels like he moved and put a bunch of IKEA furniture together, all in one day–something with which he is very familiar). He should feel 100 percent in a few more days.

With the bone marrow harvest taking place in the afternoon, Ron’s infusion was moved to Friday morning. As the doctors and nurses said, it is a bit anticlimactic, since it involves another bag–this one of marrow–hanging from his IV pole. And yet it was quite moving and significant. Deena (who arrived Wednesday and who accompanied Gabe to Brooklyn on Thursday when the hospital released him) and I were there to witness “day 0,” and we all hope there are so many days (years) that we lose count. Ron was hooked up to every device imaginable and monitored almost constantly while the marrow was infused over a period of almost five hours. All of his vital signs remained strong and he held up well for this phase of his treatment. As is typical, we will not know for several weeks whether the new bone marrow will be accepted and flourish in Ron.

At this point, Ron’s immune system has been decimated by the chemo. And just when we thought the chemo was over, more was introduced yesterday and today, to comply with the protocol for a half-match bone marrow recipient. The chemo—and everything else, for that matter—is causing periods of fatigue. He is more likely to watch TV than to read (so not Ron) and has developed a passion for Shark Tank. However, he has already finished one of the eight books he bought prior to entering the hospital and has been reading the NYTimes, and doing the crossword puzzles, on his iPad. He loved seeing Deena for a few days; no one brings a smile to his face the way she does. She’s back in Fargo and we miss her already. Gabe celebrated his birthday September 3, although he is the one who has given the greatest gift. We couldn’t be more proud of him. I’m pretty exhausted, but I’m optimistic and that lifts me up.  Most importantly, Ron’s spirits remain high and he is so grateful for all the support he is receiving.

August 29

Many years ago there was a short-lived Broadway show called Subways are for Sleeping. Based on my experience of almost a week, I can assure you that hospitals are definitely not for sleeping. My vital signs are taken every four hours around the clock. My first chemotherapy drug was one that excretes through the skin. To remove it from the skin’s surface, I had to take a shower every six hours for three-and-a-half days! Given all that soap and water, as well as my shaved head in anticipation of my hair loss, I figure I have a new nickname: Mr. Clean!

Right after I was admitted last week, I had a catheter inserted in a surgical procedure. I was sedated for two hours, so I don’t remember anything about it. Now for most of the time I am attached to an IV pole. Although I was told it would be my best friend, I am not convinced. I am now in one of the recently renovated isolation rooms. It is roomy, bright, and I have a lovely view of Central Park. The nurses, doctors, social workers and other health professionals are great. A problem is that when they are in my room, they wear masks and gloves to minimize any germs. So when I go out into the hallway for some exercise (I’m the one wearing the mask and gloves in the hallway), I often do not recognize the mask-less medical team!

All the chemotherapy drugs have been given to me through the catheter. I have been having alternately good and bad days as the chemotherapy takes effect. I don’t think I need to go into the details of those effects. We keep hoping for more good days like today.

Tomorrow is engraftment, when Gabe’s bone marrow cells will be placed in my body. We continue to hope for the best and are optimistic. And keep those puns coming in!

August 22

I will be admitted to Mt. Sinai Thursday, Aug. 23^rd. Again I want to thank all of your who have sent me good wishes. If you want to be sent an e mail each time a new blog post is available, click on the button that says “Follow.” Then you can enter your e-mail address.  Again I remind you that we cannot accept gifts of food, plants or flowers since my immune system will be compromised. If you want to send me something, puns are always appreciated. As they say, no matter how hard you try to push the envelope, it is still stationery.

During Shabbat services a few weeks ago we recited a prayer to remind us that a new Hebrew month would begin later in the week. In it we ask for blessings. I said, “The new month of Elul will begin on Shabbat and Sunday.” Then I continued, but began to choke up, as my voice became quieter. I was barely able to recite these words from the Siddur, “May it hold blessings for all the people Israel.”  That is my hope. May this month of Elul, an auspicious month, just before Rosh Hashanah, be full of blessings.

I have received many comments about how I am able to remain optimistic going into a risky and debilitating procedure. I think of a line I read in a book by British neurosurgeon Henry Marsh, Do No Harm: Stories of Life, Death, and Brain Surgery. He points out that the margins of safety when he operates are very small. There are always great risks and even if he does everything perfectly, the outcome is not certain. He says that when he talks to patients before an operation he needs to navigate a continuum between two opposites, realism and optimism. As a patient I thought that he was wrong. The opposite of realism is fantasy and optimism is the reverse of pessimism. If you are realistic, does that mean you cannot also be optimistic? For me it is a more complex equation balancing four dimensions, realism versus fantasy, and optimism versus pessimism. For example on the day that I was diagnosed with myelofibrosis, May 19, 2015, I googled that disease. One article I read said that given my age, symptoms and blood counts, I could expect to survive two to three years. Reading those words was a sobering experience. I recall thinking that I wanted to be realistic and not assume that I was going to beat the disease. I had other moments of concern. I recall one of my doctors telling me three years ago that within six months I would need a bone marrow transplant. I recall reading about people with MF whose disease rapidly became an almost incurable form of leukemia. Yet, as the last three years went by, and since I was stable, I did become more optimistic. Did I lose that optimism when the disease progressed a few months ago? At the moment  I  was told  about the  decline  in my blood  counts,  I  did  feel my mood drop. Yet, I still feel so lucky to have reached this point. Yes, tomorrow I will walk into Mt. Sinai not knowing what the future holds for me. Rhonda likes to say that no one knows for sure what the future will bring and that anyone can be hit by a bus. (Did I tell you about the time Rhonda and I were on the way to the hospital and crossing East 98^th street? I was daydreaming and it was fortunate that Rhonda noticed the SUV that came close to hitting me and brought me back to reality.) So yes, I am optimistic, finding myself balancing those four concepts. I know that there is no sure future. I know that so many people are thinking of me and praying for me. I think of how I have been fortunate in the past and those positive signs I mentioned in my previous blog posts. I hope for a positive outcome and, God willing I will see all of you, in person, in the future.

 

 

 

August 15

I was so proud of myself last week. I actually wrote my blog entry on my iPad while sitting in bed. It was a rehearsal for how I will be posting while I take up temporary residence on the Upper East Side of Manhattan, a very exclusive neighborhood – Mt. Sinai Hospital is on Madison Ave. and East 100^th Street.

I went to sleep last Wednesday night after that long day at the hospital and something unusual happened. I often wake up several times during the night. Yes, I am an old guy and I do have to go to the bathroom, but sometimes I wake up for unknown reasons. When I awoke, about four times, I heard a song repeating in my ears. You know how sometimes you hear a song and you can’t get it out of your head?  However, this was a song I had not listened to for some years. It was It’s Not Where You Start, Its Where You Finish. I have a CD with that song by my favorite and if you want my opinion, the best Broadway diva of all time, Barbara Cook, (sorry you Patti Lupone and Bernadette Peters fans. Those singers are great, but to my mind not as good as Barbara Cook). She recorded an entire CD of songs written by Dorothy Fields, such as On The Sunny Side of the Street, and I Can’t Give You Anything But Love. The song I could not get out of my head was on that CD. It was written for the Broadway show Seesaw. Here are the lyrics that I was constantly hearing, “It’s not where you start, it’s where you finish, And you’re gonna finish on top.” If you want to hear Barbara Cook sing it go to https://www.youtube.com/watch?v=Xt9rXhISQvU Why after all these years, did that song return to my consciousness? All I can say is that (OK Dr. Freud) my unconscious is seriously thinking about the next few weeks and months. I will be having a difficult start with the chemotherapy and the bone marrow transplant but my head is telling me that I am “gonna finish on top.” Not a bad thought for me now. Who knows why those lyrics came back to me in such a haunting way. They are in my head and work as my mantra for now.

August 8

We had a long day at Mt. Sinai today. I would much prefer that the local pub was the place, where, as they said on the TV series, “everyone knows your name,” but many at Mt Sinai know me. It does make a difference that when I first walk in, if it is Shawntel at the first desk, I hear, “How are you doing today Mr. Roth?,” rather than having to identify myself by name and birth date. Today we even ran into a colleague, another Conservative Rabbi, who is being treated there.

All the pieces are now in place after many tests. Last week as my blood was about to be taken, the nurse put twenty test tubes next to my arm. Usually it is only three or four of them each week. He filled them quickly and I still had enough blood left in my body to get home! Someone said it is like being sure that all the details are checked off before a space flight In fact we have the dates listed on a calendar as a countdown. I will be admitted to Mt. Sinai on Aug. 23. That is Day minus 7. After six days of chemotherapy, Aug. 30 is Day zero, the day of the engraftment. Then, the days are counted up from plus 1 to what we hope will be a very, very long series of numbers. Our doctors are reassuring and we feel we are in the best of hands as we will soon begin our journey.

 

 

August 1

I had hoped to find out more about the date of my hospital admission when I went to Mt. Sinai this week. Unfortunately that has not been finalized. There are some unresolved scheduling issues. However I learned a little more about the process of my treatment. On the day I am admitted I will have a catheter or central line placed in my chest. After that I will have a week of chemotherapy to destroy my damaged bone marrow. I have seen a list of the chemo drugs that they will administer and I said to one of the nurses that the “old Ron Roth” — that is me three years ago — would have gone to the internet to learn everything I could about them. The “current Ron Roth” knows that there will be a reaction to them. I have been told what to expect by my doctors and nurses. Whatever it will be, it will be. My doctors will do their best to mitigate the side effects. Then on the eighth day at the hospital, day zero, in the transplant lingo, the day of engraftment, I will receive the bone marrow from Gabe. My hospital stay will last from four to eight weeks. If Moses could stay on Mt. Sinai forty days and forty nights, I can manage at least that long. Then I will recover at home. I am trying to be patient and calm. Patience has not always been one of my virtues. All of your words of support help me as I look to my treatment and recovery.

On a lighter note – did I mention that part of my therapy for the past few months has been a weekly stop at the Dunkin’ Donuts in Penn Station on my return trip from Mt. Sinai to New Jersey? I have become addicted to their frozen hot chocolate. What a treat after a traveling on a hot day! Do you know how many calories there are in the medium sized version of that beverage? They are required to post that number on their menu. It is 700! Does that deter me? No. When they ask me if I want whipped cream with it, all I can say is, absolutely! If they don’t ask me about the whipped cream I tell them to add it, please.

I have learned over the past three years that I won’t get all the answers and even the doctors don’t know exactly how my body will react to my treatment. I remain optimistic and for now I can indulge my sweet tooth.