Kristen Benson's Eulogy delivered by T. Richard Corcoran

Download as a PDF at http://www.southoxford.com/Kristen_eulogy.pdf

Kristen Benson's Burial at Green-Wood Cemetery.

The burial service is scheduled for MONDAY SEPTEMBER 24, 2018 at 1PM at Green-Wood Cemetery, 500 25th Street, Brooklyn, NY. Please bring flowers to place on the casket. There will be an informal get-together at Kris & Abby's home following the burial. A memorial service at the Green-Wood historic chapel is being planned for the near future.

We lost Kris

It is with overwhelming sadness that I report the passing of my beloved wife and partner Kris in the early morning hours of September 14 at NYU LANGONE hospital. She will forever be in our hearts. Details of the burial services will be posted here 😞💔

Good news

Last Tuesday July 19 Kris had a blood test and on Thursday July 21 a PET scan. A PET scan is like a CAT scan only with a small amount of radioactive material (tracer). We saw her wonderful oncologist Dr. Blank on Tuesday July 26 when Kris and I went for her monthly infusion. Kris had a positive report. Her tumors are shrinking about 30% and one is gone. (Usually the doctors are happy if they don't grow) Her CPA 125 blood level was also lower. She may have to stay on the regimen of the PARP pills and monthly chemo indefinitely though. Discounting her side effects (heat rashes, headaches, low energy, nausea, arthritis inflammation) this is good news. 

Medical Marijuana - this week!

Kris became the first NYU Women's Oncology patient to get a prescription to medical marijuana. She was prescribed marijuana to combat nausea, vomiting, headaches, anxiety and depression; as an anti-inflammatory (for arthritis swelling and pain); and for its anti-cancer/anti-tumor properties. Medical Marijuana was approved by New York State in 2013 and the first dispensaries opened up in January 2016. (See http://www.compassionatecareny.org/medical-marijuana/ and https://www.health.ny.gov/regulations/medical_marijuana/faq.htm). There are only TWO dispensaries in NYC. One is on 14th Street in Manhattan and the other is in Elmhurst, Queens. Our visit to the slick 14th Street dispensary was a bit strange and somewhat disappointing.

First off, New York State does not allow edibles or buds. Under the law, smoking is not permitted. The only approved types are liquids (a greenish tincture with a dropper for sublingual administration) as an oil for vaporization via a special inhaler, and as capsules to take orally. They sell it in three strength formulations: 1 part THC & 1 part CBD: 1 part THC and 2 parts CBD; and 1 part THC and 20 parts CBD. CBD is the ingredient that has the most medicinal properties and cannot get one high.  (For more about CBDs see http://www.leafscience.com/2014/02/23/5-must-know-facts-cannabidiol-cbd/).

After making an appointment and consulting with a woman in a white lab coat, Kris started with the liquid (shown in photo). The cost was $53 for a 14 dose bottle of tincture. At only two doses a day, one could easily spend over $200 a month - none of which is not covered by medical insurance. Hopefully it will help Kris. 

One good thing is: A family member or friend (me) can sign up as a Caregiver, who with their own MM ID card can go to the dispensary and pick up prescriptions for Kris. But remember, it does not get one high.

Sunday Outing to the Ramones exhibit at Queens Museum 6/5/16

Life can't be all chemo. On Sunday we went on a fun impromptu trip with old friends to see the Ramones exhibit at the Queens Museum, which included a visit to the NYC Diorama from the 1964-65 World's Fair (which is in need of updating). From left to right are: Wendy Brawer, Ray Sage, Kris and Abby. Photo by Andru Eron. For anyone interested in the birth of Punk Rock and the early CBGBs & Max's Kansas City scene, the exhibit is a must see. Brought back a lot of memories for all. Afterwards we went to lunch at a bonafide Mexican Taqueria in Jackson Heights. (Yes, Abby eats some Tex Mex.)

Kris is on her second week of taking the PARP Inhibitor, with another 8-hour + day of blood tests. She is tolerating the regimen in good spirits despite being tired and nauseous - and feeling like a pin cushion.

Kris started the Trial Drug yesterday

In over an 8-hour time period, Kris took her first dose of the PARP inhibitor trial drug ABT-888 after a dose of chemo. She had to have numerous blood tests in 1-hour and 2-hour increments to test the levels of the drug in her system and was supervised to check for side effects. So far she has had only minor issues with ABT-888. The chemo drug Doxil (nicknamed "red devil" by patients because of its red color and side effects) is another story. She will take the experimental ABT-888 pill twice daily from now on.

Kris has a recurrence

After almost a year in remission, in late March Kris had a routine blood test which indicated an increase in her CA 125 levels. Her recurrence was confirmed with a PET scan. A few weeks ago she started chemo again, this time using Doxil (Doxorubicin). Fortunately, she was accepted in a trial sponsored by NYU Langone of a new cancer drug called a PARP inhibitor. PARP inhibitors appear to improve progression-free survival in women with recurrent platinum-sensitive ovarian cancer (as described by Wikipedia). She starts the PARP inhibitor next week in combination with Doxil. Unfortunately there can be numerous side effects to the new regimen including nausea, vomitting, rashes and heart and liver issues. Because of this she has to get blood tests twice a week to start. During chemo her hands and feet are kept cold with ice. Will keep you posted.

Kris and her Happy Face balloon

We went to see Alice Cooper and Motley Crüe at the Barclays Center last night with some good friends, neighbors and family members. (Alice Cooper was fantastic!)

On the arena floor the crowd was batting around large balloons (as they annoyingly tend to do at large concerts). The yellow ones had a Happy Face, which were probably left over from the previous night's YES concert. Kris really wanted one and said "I'm going down there to get a balloon." I replied with characteristic optimism: "you'll never get one." See the priceless photo.

To prevent drunk heavy metal concertgoers from popping it, or sending it sailing back to the arena floor, she opened the knot, took the air out, flattened it and took it home. Now she wants me to do internet research on the best way to store a used balloon.

Meet Billy the Kitten, 8 weeks old

A few weeks ago, Kris' sister's husband Steve found a new litter of five tiny kittens in an abandoned truck and took them home. Karin and Steve were fostering them until they could be adopted. Last Sunday we went to a family barbecue at their house. I should have known something was up when Kris packed an empty cat carrier in the car. I assumed she was planning to donate our extra carrier to BARKS, an animal rescue organization which Aunt Carol works with.

Soon after arriving Kris introduced me to a tiny, grey & white, 8-week-old kitten named Billy. If you know mid-1960s rock group trivia, and that our two black cats at home are named Dino and Desi, you already know the end of the story. We are currently slowly introducing the increasingly rambunctious Billy into the menagerie. We are all adjusting to the tiny, hyperactive family addition. Murray the dog, who has been somewhat standoffish is very patient when Billy plays with and nips his ears; while Dino and Desi are still undecided but curious, expressing their feelings with an occasional hiss or growl. In the end, Karin kept two of the kittens and Aunt Carol took the remaining two for future adoption. Karin now has 6 cats, a dog Madeline, and a parrot. On Friday, Billy had his first trip to our Brooklyn vet for treatment for an eye infection.

Kris is feeling better, vacuuming the backyard

Her hands are a little better since she added a low dose of Prednisone to her daily regimen. She has been spending a lot of time working on the backyard garden. Only Kris would clean the yard with a Shop-Vac. She is currently cancer free.

Great news and another challenge

Last week Kris had her last Chemo appointment followed by a CAT scan Monday and a meeting with the Oncology team on Tuesday May 12, 2015. The great news is her scan was completely clear with no traces of cancer. And her blood work has greatly improved as well but she is still somewhat anemic. We also met Tuesday with the Genetics Counselor who had recently performed a genetics test on Kris which came out negative on 23 cancer markers, including brca 1 and 2. But while this is all good news, Kris' type of cancer has a 75-80% chance of recurring and the projected survival rate is ten years. Let's all hope and pray she beats the odds.

The new/old issue which we are now dealing with is Kris' Psoriatic Arthritis, a degenerative joint disease and autoimmune disorder that she has been treated for since the early 1990s. When she received the cancer diagnosis she was being treated somewhat successfully with Remicaid, a biologic which is administered via an infusion every 8 weeks. 

Unfortunately, due to possible conflicts with her chemo, her Remicaid infusions were suspended and she instead went on a new "safer" oral drug called Otezla (which btw costs over $2G a month). However, as indicated by her painful inflamed hands (see photo) the Otezla is not working yet. The doctors say it may take 6 months to a year to work. 

After much discussion with her oncologist Dr. Blank and Kris' new Rheumatologist (whose specialty is Psoriatic Arthritis), the doctors have decided to supplement the Otezla with another drug, Methotrexate, and wait and see. If this treatment does not work she can always go back to the bi-monthly Remicaid infusions, however Remaicaid comes with a million warnings against possible links to cancer. which was why they stopped it last November. So, as you can see, while this is a time for celebrating and catching our breath, we are still not completely out of the woods.

Chemo: 2 more to go and then another CT Scan

So far everything is on track. Kris will go for a CT Scan to review the progress on May 11, a week after this round of chemo finishes  Unfortunately, going forward, she may have to have a CT scan 3-4 times a year.

Better news: Kris was approved for her Social Security Disability benefits, which start in May. Her monthly amount is equal to her full SS retirement benefits. She can still work but has a strict earnings limit. She got turned down for SSI - because we have assets over $3,000. but overall, the application process was surprisingly easy and pleasant. 

We also got a new Tommy Hilfiger denim duvet cover which looks like blue jeans. We hope it is Murray-proof -- his claws accidentally ripped two old bedspreads. Only $49 at Marshalls! See photos.

Happy Tax Day

Our cat Desi helping with the taxes

Kris had her 6th chemo session yesterday. So far so good.  She is now taking a new daily oral medication in pill form called Otezla for her Psoriatic Arthritis, another of her ongoing medical issues. Prior to her cancer diagnosis, she was being treated with Remicaid, an infusion-only biotech drug every 8 weeks. The Remicaid was 
put on hold. However, because of her painful psoriatic arthritis, mostly in her hands, she may have to go back to Remicaid when she's done with her chemo. 

Social Security Disability

On Easter Sunday with her sister's
new kitten, Sophia

We have been putting off signing Kris up for Social Security Disability for months. It is a big milestone with lots of emotional meaning and ramifications that neither of us wanted to deal with. Kris loved her job and had worked there for 19 years. The owners and co-workers are like family to us. Once she starts receiving benefits, even if Kris feels up to working, she will not be able to earn more than $700 a month. Life really is unpredictable; you can leave work on any evening and never return. Since we finished the online application (which took hours!) we have already gotten three helpful phone calls from Social Security, which was totally surprising. Apparently, if you have cancer your disability application is fast-tracked. 

Walt Disney World for her birthday/Halloween?

Happy 12-Year Anniversary

Paris Las Vegas hotel: The happy couple waiting for the limo to wedding

Today is Kris and Abby's wedding anniversary. We were married on April 1, 2003 in Las Vegas, Nevada at the height of the 2003 Invasion of Iraq. The wedding party stayed at the Paris Las Vegas hotel, which was near empty due to the anti-French backlash at the time (Remember freedom fries?) Too bad the hotel had no connection to France except for its theme and decor. We all had a great time.

Kris inside chapel doorway
on right.

The ceremony took place at The Little Church of the West – the same wedding chapel where Elvis Presley and Ann Margret got married at the end of the film "Viva Las Vegas." The Little Church is unique in other ways; built of California redwood, it is a detailed replica of a typical pioneer town church. And, as the oldest building on the Las Vegas Strip, it is listed on the United States National Register of Historic Places. 

Fourth chemo. Five to go.

Kris relaxes at an 18th floor window gazing at the Empire State Building with her med pole on Tuesday March 31, 2015. Didn't make it Velselka today for pierogies because parts of 2nd Avenue below 14th Street were still shut down because of the massive gas explosion that leveled four buildings and killed two last Thursday at 7th and Second Avenue. Very sad days for our old neighborhood.

With and without a hat. Chemo Day, infusion #2.

Another one of her hats by Amy Downs.

Kris relaxing during her second infusion session on March 17, 2015.  Her hair is growing back like "GI Jane," but will probably start falling out again later in this round of chemo treatment. She is enjoying her new white blankie with pom poms - a great gift from her old friends Beth and Colin, who came to visit last Sunday. One problem: Murray thinks the pom poms are part of a large dog toy for him. 

Despite the rigors of her treatment Kris is still upbeat. The shorter one-drug infusion sessions take at least 2 and a half hours. The double dose infusions (like last week) take at least 4 hours and a half hours. Kris cannot take public transportation while on chemo so we usually drive in. Thankfully, our NYU Langone Oncology center has subsidized valet parking for chemo patients at only $21 a visit. Other parking facilities can run as high as $45 a visit. It is still cheaper than traveling round trip by car service or Uber, which can run $40 each way at minimum. 

We are currently looking into the pros and cons of getting Kris on Social Security Disability. She has not worked in almost 6 months and is now eligible to apply. If anyone knows anything about SSDI let me know.

On another front, Abby pulled out his back a few months ago ago and has been suffering with severe sciatica pain. After numerous doctors, MRIs and a surgical consultation, he is getting another epidural next week. Guess who drives Abby to his doctor appointments? Fun times.

KRIS IS BACK for Chemo, Round 2

RETURNING FROM A PEE BREAK WITH
HER TRAVELING INFUSION POLE

The first visit of three 3-week sessions which includes the two major drugs, started on Tuesday March 10. These double-med sessions take about 5 hours from check-in to picking up the car, starting with a blood test (not for the car). Only one drug is used for the second and third visits. So far Kris has been tolerating the chemo meds very well. The worst is a bad headache today. She is a trooper. Let's hope her positive attitude continues!

CARBOPLATIN

PACLITAXEL

The Staples have been removed from Kris' incision

With the staples

On Wednesday February 25 Kris had the staples and the drainage tube removed. See before and after photos. She is doing as good as one could expect having this much surgery. Despite having difficulty moving around and getting up, she gets a little better every day. The scar is healing nicely. She will starting another 9-week round of chemo on Tuesday March 10, 2015.

Without the staples