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