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

Kris Recuperating with Murray

On the couch with Murray

Recuperating from her surgery, Kris stays warm and reads on the couch with our goof ball dog, Murray, aka Muzzie. On Friday February 20 she had about half of her staples taken out, although she still has the drain on her abdomen. If she coughs or sneezes really hard she could still split open the sutures. We are going to see the oncologist for a full post-surgery briefing on Wednesday morning, February 25.

"Muzzie" relaxes on the couch

Desi & Murray holding Kris' spot on the bed for her

Desi and Murray sleeping on Kris' side of bed

Just about the cutest picture ever: when Kris was away in the hospital, Murray and Desi slept together on Kris' side of the bed, keeping it warm for her.

Home from the hospital

Belly Button Selfie

Kris came home this afternoon. She is in a lot of pain and discomfort, and still has a drainage tube attached to her abdomen. She mentioned that the last picture - the one of her in the hospital looking happy - made this look too easy. It is not easy.

Kris is sitting up

She didn't want her picture taken but I insisted in the name of public enlightenment and journalistic ethics. The henna on her head has faded but otherwise she is looking 100% better than yesterday. She is currently on a liquid diet. Her phone is still in her overnight bag so don't expect her to answer for a day or so. Not ready for visitors yet.

Kris is doing well after surgery

I just left Kris resting peacefully in her room. She was really out of it, on a morphine on-demand thingy, The surgery took over 4 hours.  I spoke to her surgeon oncologist dr blank afterwards who said that everything went very well - she thinks she removed all the cancer although they want her to do another round of chemo starting in about 3 weeks to make sure. They removed her ovaries, which did not have cancer, confirming the oncologist's original diagnosis of Primary Peritoneal Cancer. 

The worst news is she'll have a vertical scar on her abdomen and they had to remove her spleen - which the doctor says is not that big a deal. Kris will most likely be in hospital until Monday now. 

Surgery is Still On for Wednesday February 11, 2015

Kris with her new henna head!

The lymph node biopsy from last Thursday came back negative, so the cancer has not spread and the surgery is still on. HOWEVER, based upon her EKG and ER visit last Friday, Kris still has to see a cardiologist beforehand to make sure she is fit for the surgery. She has an appointment tomorrow, Tuesday. They are covering all bases. If she does have surgery Wednesday (and I will let you know) if you want to visit her in the hospital let me know so we can arrange it.

Four Doctors Appointments and One ER Visit

Kris and Murray the other night

On Monday February 2 we met the oncologist to review the latest scans in preparation for the surgery still scheduled for February 11. (The original review for Jan 27 had to be rescheduled due to the snow storm, which was why there was no new blog posts). The oncologist said she was pleased with the shrinkage in the lower abdomen, BUT she wanted to check her lymph nodes, which appeared slightly enlarged. This lead to a full body PET scan on Wednesday at 7AM, where Kris was literally radioactive for a day and had to stay 6 feet away from humans and pets (meaning keeping Murray and the cats away off her for 24 hours - not an easy task); on Thursday morning a lymph node biopsy at the hospital; and on Friday afternoon a pre-surgery screening examination at 3PM. During that exam the anesthesiologist became concerned about Kris' EKG and wanted her to go to the emergency room right then, in an ambulance no less (even though we had the car downstairs in subsidized valet parking and NYU Langone was 5 blocks away). She went right in and they ran a blood test looking for certain enzymes which would indicate some sort of heart trauma, they found nothing, and sent us home in about 3 hours, now 9 PM. We then went to Velselka for takeout again and came home to a film shoot still parked on our block (we moved some cones to park).

Overall, Kris still feels OK and never thought there was anything going on with her heart. It could have been anxiety, fatigue or a side effect of one of her drugs. New photos of Kris' latest henna tattoo will be posted shortly. She found a real artist from Flushing who made a house call.

First Post-Chemo Cat Scan done today

Louise Belcher, Finn or just a cat?

Kris went to NYU Langone Medical Center for her first CT Scan after nine weeks of chemo. We will be seeing the oncologist on Tuesday, Jan. 27 at 11:30 AM to learn the results, so keep your fingers crossed. We will keep you posted. 

Kris Finished First Round of Chemo on Tuesday Jan. 6

Resting with the AniPals:
Murray, Dino and Desi (front)

After nine sessions she gets a few weeks off before her next MRI, which will precede her surgery, currently scheduled for February 11. Unfortunately she has come down with a cold, with congestion and an ear ache. She doesn't have a fever so no one is alarmed yet. 

In the middle of all this, we are facing new challenges with our "new 2015" insurance company and their new "Pharmacy" (Express Scripts). Because of our forced switchover to a new healthcare plan ("we liked our old plan but we couldn't keep it") we had to start from scratch for nearly every aspect of her treatment, including the specialists, tests and the chemo treatments; with doctor's reports, pre-approvals, "bridges," and "overrides." And there are two Tier 3 drugs which she now requires daily, both of which we are about to run out of. We could not just refill them with Walgreens Specialty Pharmacy as in the past, or go pay outright for the drugs because they are very costly biologics. One of the drug companies offered Kris a free two month supply on an emergency basis, but as of yet nothing has been mailed to us. 

A lot is still up-in-the-air. It is one thing to be sick, and another to be sick from dealing with this absurd healthcare system, where some people pay nothing and others go bankrupt because of a serious illness. 

Hopefully everything will be worked out without interruption, despite the fact we are still waiting for our new, more expensive, 2015 Blue Cross Blue Shield health insurance cards. Happy New Year to all.