Finally got it (I think)

I’ve been trying for two days now to post this video of Julia during the Super Bowl half time show.

Enjoy!!!

Love,

Rebecca

Good news

With all that has gone on the last six months or so, you may have forgotten that my close up and personal relationship with cancer began almost six years ago with the diagnosis of primary CNS lymphoma in my brain. Yesterday was my long-ago scheduled follow-up MRI and visit with Dr. Lisa DeAngelis, the neuro-oncologist who oversaw my treatment back in 2012. I am glad to say that the news was good, although Dr. DeAngelis is now wondering how it is that the lightning that had already struck twice has now struck a third time. We agreed to wait a year and a half for the next follow-up visit. The neuro-oncology group has me scheduled for August 2019 but I have requested pushing it off until after Labor Day so that we can keep August available for our grandchildren.

Meanwhile, I am scheduled for further testing on the bladder lesion next week, as well as routine follow-up with my pulmonologist. Right now, I am glad that all that is on my calendar for tomorrow is routine oxygen delivery, and, if possible, I will go to a class or two at Hebrew Institute of Riverdale.

Every time we visit Dr. DeAngelis the routine is the same. First, the MRI, then we wait to see the doctor. Before Dr. DeAngelis arrives, one of the neuro-oncology residents does a routine follow-up evaluation, including those annoying memory tests. Yesterday she asked me to remember three words: apple, tiger, and love. Barry later shared with me that he used those techniques from Joshua Foer’s book, “Moonwalking with Einstein” to remember the words. I still have a hard time with this exercise, and had to ask Barry for help in order to write this!

What did stick with me in this visit was my impression of the neuro-oncology resident herself. She is, and there is no gentle way to put this, morbidly obese, unusual to see in a young physician. Her excessive weight was only compounded by her overall unkempt look, including ill-fitting clothing. This was in stark contrast to Dr. DeAngelis, who always looks like she just stepped out of the pages of a fashion magazine for highly intelligent professional women. I know this is grossly unfair, and the fact that this young woman is a resident at MSKCC tells me that she is an extremely bright and capable physician. But it is sad to think that her career may well be less successful than her intelligence should allow.

Sometimes one thing leads to another, and as I was writing this I went back to look for a picture of Dr. DeAngelis when I came across this article on the MSKCC web page:

Halina’s Story about Primary Central Nervous System (CNS) Lymphoma

Around New Year's Eve, Halina Frydman’s husband noticed changes in his wife's personality. Soon after, she was diagnosed with primary central nervous system lymphoma, which arises in lymphocytes, a type of white blood cell. She came to Memorial Sloan Kettering to receive treatment through a clinical trial.

 

Can a husband dance too much with his wife on New Year’s Eve?

Roman Frydman’s motives for dancing the night away with his wife, Halina — while loving — were not entirely to ensure that she would have a good time at a New Year’s party welcoming 2005. Instead, he was concerned about recent, disturbing personality changes he had observed in her — including unchar­acteristic anger toward a friend attending that night’s celebration.

“My husband danced with me a lot that evening because he didn’t want me to interact with too many people,” says Dr. Frydman. “He recognized there was something wrong.”

Several days later, in her office at New York University’s Stern School of Business, where she is a professor of statistics, Dr. Frydman realized she was unable to focus on her work. Returning to her apartment, she tried to read a book. Her husband, also a professor at NYU, asked what she was reading.

“I couldn’t tell him,” Dr. Frydman recalls. “That’s when he got very upset and called a friend, a psychiatrist, who said, ‘Take Halina to the emergency room now.’”

At NYU Medical Center, an MRI scan of Dr. Frydman’s brain showed a tumor. Immediately admitted to the hospital, she began a course of steroids. The tumor shrank dramatically.

She explains: “At first, the doc­tors suspected it was a metastasis from the breast cancer I had in 1999. But because it shrank so much and so fast, they thought, ‘This is not a solid tumor.’”

A brain biopsy followed and finally a diagnosis: primary central nervous system (CNS) lymphoma. Dr. Frydman had been treated for breast cancer at Memorial Sloan Kettering by medical oncologist Clifford A. Hudis (now Chief of the Breast Cancer Medicine Service) and wished to be treated at the Center again.

Dr. Hudis referred the Frydmans to neuro-oncologist Lisa M. DeAngelis, Chair of the Department of Neurology and now Co-Executive Director of the Brain Tumor Center.

“CNS lymphoma is a rare cancer that can involve the brain, spinal cord, eyes, or the coverings of the brain and optic nerve, called the meninges,” says Dr. DeAngelis. “The designation of the disease as a lymphoma reflects the fact that the cells from which this cancer arises are lymphocytes, a type of white blood cell.”

 What we have learned is that underlying brain tissue is not necessarily destroyed by tumors; therefore effective treatment really can restore people to functionality. 

Lisa M. DeAngelis Neuro-oncologist

Dr. DeAngelis enrolled Dr. Frydman in a clinical trial consisting of methotrexate — a chemotherapy drug that was given in very high doses — along with the chemotherapy drugs vincristine and procarbazine, and a monoclonal antibody called rituximab.

“CNS lymphoma of the type that Dr. Frydman had used to be treated with whole-brain radiation, which can damage normal brain structures and affect cognitive function,” explains Dr. DeAngelis. “At Memorial Sloan Kettering, we’ve pioneered the use of chemotherapy for these tumors. Although radiation continues to play a role, we are exploring significantly reducing the doses. In patients who have received chemo­therapy and low-dose radiation we don’t see cognitive damage and the majority of them are doing extraordinarily well.”

The protocol for the trial still called for whole-brain radiation, albeit at a reduced dose. However, following chemotherapy, a scan of her brain showed no signs of cancer and Dr. Frydman decided against it.

“I was worried that I wouldn’t have been able to go back to my work,” says Dr. Frydman. “I asked Dr. DeAngelis, ‘In your opinion, if I don’t do the radiation, will I put myself at a higher risk of a recurrence?’ She said no. She was very open-minded about it.”

“Dr. Frydman had gone into complete remission and had made a full clinical recovery,” says Dr. DeAngelis, “so I felt I could support her decision.”

Dr. DeAngelis concludes, “What we have learned — and lymphoma is one of the best examples of this — is that underlying brain tissue is not necessarily destroyed by tumors; therefore effective treatment really can restore people to functionality.”

Halina Frydman has certainly been restored. She has returned to a full life of teaching, researching, writing, and publishing. And today, she and her husband dance just for the fun of it.

Another statistician with primary CNS lymphoma. I am glad she has had such a positive outcome and even returned to her work. Maybe Barry and I should go out dancing!

Love,

Rebecca

Happy times

We had a great day on Sunday. First we watched the Maimonides Junior High School M-Cats beat JCDS (another local Jewish school) 48 to 37, with Joshua scoring 11 of those 48 points and having more than 10 rebounds.

We then took Eliana and Ella to Ben and Jerry’s followed by a trip to Barnes and Noble, where we bought a bunch of books and some toys for the two little ones.

Then we all headed over to Dina and Aaron’s house for the Super Bowl. To be honest, I have never much cared for football. I never thought I would say or write this, but the Super Bowl turned out to be a great thing! Yes, I know that “our” team lost, but being able to spend the time with our family was, as they say, just what the doctor ordered on what would have otherwise been an incredibly depressing and stressful day of waiting for test results.

Joshua modeled all of his team t-shirts and baseball caps and jerseys.

Julia really got into the half time show!

I am so grateful to have this terrific family to help me keep my focus on the good things in life.

Love,

Rebecca

Two steps forward, one step back

Thursday 01 February 2018, 7:20 pm

These last couple of days have been a bit of a roller coaster ride. On Tuesday morning, Barry and I had back to back routine dental appointments. Shortly before we were leaving the house, the phone rang and it was Dr. Gopa Iyer, whose bio on the MSKCC website says:

I am a medical oncologist who specializes in research in and treatment of patients with genitourinary malignancies, including bladder, prostate, kidney, and testis cancers. I also have a special interest in understanding the genetic basis for bladder cancer and am a member of Memorial Sloan Kettering’s Bladder Cancer Oncogenome Project, a multidisciplinary effort to discover the key genetic abnormailities that drive this disease. The discovery and understanding of these genetic abnormalities hold the promise of novel treatments for patients with bladder cancer.

Dr. Iyer was responsible for administering the low-dose gemcitabine therapy I received twice a week as a radiosensitizer during the radiation treatments for my bladder cancer. He and Barry had many fascinating conversations during those infusions. So, when I first heard his voice, I thought he might be calling to talk to Barry about one of their shared research interests.

Unfortunately, this was not the case. He was calling to discuss some findings from the scans I had at MSKCC two weeks ago. I am not sure just when the report had been posted on the patient web portal, but I had not received any notification and had never looked at it, so this was the first we were aware. Here is the pertinent section:

ABDOMINOPELVIC NODES:    New left para-aortic, left common iliac and left external iliac adenopathy. For example:
*  Left para-aortic node measuring 2.2 x 1.4 cm, new
*  Left para-aortic node measuring 1.2 x 1.0 cm, new
*  Left external iliac node measuring 1.6 x 1.3 cm, previously 1.2 x 0.9 cm, increased

Dr. Iyer was understandably reluctant to hypothesize the meaning of these findings, but he wanted to schedule a PET (positron emission tomography) scan as soon as possible. I had this done yesterday (Wednesday), but the results will not be available until Friday afternoon at the earliest, which means I may not have a chance to find out about them until next Monday.

It is now Thursday and we drove to Sharon today. We have not yet told our daughters about this, and are debating whether we should wait until we know more.

Meanwhile, I am trying to just put it out of my mind and have a good weekend with the family.

Friday 02 February 2018, 3:15 pm

Early this morning, legendary Punxsutawney Phil scurried out of his little marmot hole and saw his shadow, which legend says means we are in for six more weeks of winter.

If you’re wondering, this is a  132-year-old tradition that is held every year at the location known as Gobbler's Knob and conducted by top hat-donning members of the Inner Circle of the Punxsutawney Groundhog Club, according to the official Pennsylvania tourism website. The idea is, the groundhog wakes up from hibernation on the 2nd, and if it sees its shadow, there will be six more weeks of winter. If it doesn't, warmer weather is just around the corner.

I cannot say I am happy to hear this, but I am glad we drove up to Sharon in lovely, somewhat warmer weather yesterday rather than in the icy snow this morning.

I am hoping that possibly I will hear from Dr. Iyer before Shabbat, but since that is only an hour and a half away I am not optimistic. Simmie, Ronen, and Eliana are joining us here for dinner while Maya is at a class Shabbat dinner. Tomorrow the whole family will be gathering for lunch at Dina’s.

I still have not decided whether to share the current situation with them. I just got off the phone with our sister-in-law Jody who we recently learned will be undergoing orthopedic surgery on her knee next month. I wanted to reach out to her about this but did not mention what is going on with me right now. When we finally do, I realize that she may find it puzzling that she spoke with me today and I did not say anything. I hope she can understand why I could not share this with her before sharing it with our daughters.

Tuesday 06 February 8:45 am

We returned to New York around noon on Monday and immediately left messages for Dr. Iyer. He finally called around 5:30 pm.

The results of the PET scan were consistent with those of the CT from two weeks ago. The good news (if there is any good news in this) is that, although two weeks is long enough for a very aggressive growth to have increased in size, the lesion does not appear any larger than it did when first noted.

The next step is to attempt to do a biopsy. I say “attempt” because Dr. Iyer was unsure about whether this lesion can be accessed without a more extensive procedure. So, we will first consult with the interventional radiologist to determine whether performing a biopsy would be safe, which should happen within the next few days. Depending on the conclusion, either the biopsy will be scheduled or I will just proceed directly to treatment, which will likely be with one of the newer targeted agents. Because some of these agents may impact pulmonary function,  this will need to be preceded by consultation with my pulmonologist, Dr. Padilla, who as luck would have it I am seeing for a routine follow-up visit next Monday.

I will keep you posted. Meanwhile, I will send post pictures of our weekend activities with the children.

Love,

Rebecca

Where are you from?

Here is something I just saw on Facebook. I may have grown up in the Midwest but I guess I really have become a New Englander. 

Where are you from?

Two very different documentaries

We have seen two movies over the past week. The first we watched on Netflix, a movie called “One of Us.” This documentary focuses on three individuals who were born and raised into the Chassidic Jewish community but chose as young adults to leave the community. One of the reasons that these communities have been so successful is that they provide a strong support system for their members. They celebrate together through joyous times and take care of each other through hard times. What is expected in return is strict observance of Jewish law as their leaders have interpreted it. For individuals who seek even a small amount of independence or divergence from the community norms, the life can be smothering. But leaving is no easy feat, because people who are raised and educated in such environments have little knowledge of even the simplest aspects of life outside their communities.

The first of the three young people, and in many ways the most painful of the stories, is Etty, a woman in her early 30s who seeks a divorce from an abusive husband, father of her children. The second is a teenager named Ari, who simply wants to learn more about the outside world but is forced to leave in order to do so. And the third, Luzer, walked away from a wife and children in order to pursue an acting career in the secular world. There are no sugar-coated happy endings here.

We went downtown to the IFC Center yesterday to see “The Final Year,” a documentary about President Barack Obama’s last year in office. The film essentially followed the lives of four members of the administration during that year: The President, Secretary of State John Kerry, Ambassador to the United Nations Samantha Power, and Deputy National Security Advisor Ben Rhodes. I have to be honest and admit that I was not paying nearly as much attention to such matters then as I am now. Although I was certainly familiar with John Kerry, I cannot state with certainty that I could have named Ms. Power or Mr. Rhodes had I been asked a few years ago. I know that some of my readers were not enormous fans of the previous president and his policies both foreign and domestic, but at this point I think it is fair to assume that most of us miss those somewhat quieter and more civilized times.

A couple of weeks ago I wrote about the impending closure of one of our favorite movie theaters, The Lincoln Plaza Cinema at Broadway between 62^nd and 63^rd Streets. Somehow, I guess I’ve been asleep at the wheel here because what I had not noticed was that The Landmark Sunshine Theater, formerly downtown, has closed and reopened as The Landmark at 57 West (West 57^th Street between 11^th and 12^th Avenues). We need to check that out – it looks really nice, with plush seating a bit more like the “Luxe Level” we enjoy at the theaters in Massachusetts. Stay tuned for an update.

Meanwhile, have a good week.

Love,

Rebecca

Addendum to previous post

Barry just reminded me of a related story. We have “caller ID” on our phone and when we do not recognize the caller we tend not to answer. Lately we have had numerous messages in support of political candidates in various cities. One day last week I mindlessly picked up the phone to find myself chatting with Ed Meier, a candidate for Congress from Dallas, Texas. Since we had lived in Dallas from 1980-1986 I was somewhat amused so let him make his pitch. He mentioned a number of familiar names from the Obama administration, including former Treasury Secretary Jack Lew, a fellow we know who lives a few blocks from us. So, I agreed to consider a donation and asked him to send me an e-mail message. It was only after I got off the phone that I realized that he likely had the wrong Barry Rosenstein, and I replied to his e-mail with a modest donation and a suggestion that he might want to make sure he found the correct one who would be in a better position to help out with his campaign.

I really do have to get smarter about this stuff!