Latest from Roni

This is Roni writing.

Kevin has been wanting to write a new blog update — his goal had been to get one done last week after all the family visits were over — but he's been too tired to think through what he wants to say. I'm hoping he will feel a bit stronger and we'll be able to work on sharing his thoughts in a posting this week. 

Kevin’s pain is now fairly well controlled with narcotics, but he has very little appetite. He does eat small amounts of food throughout the day — mostly cold creamy things like pudding, ice cream and yogurt and protein drinks. The loss of appetite is due, at least in part, to his body being less able to process food. Hospice says to concentrate on his comfort and not push him to eat.

Kevin’s breathing is labored (he’s on oxygen 24/7), and the least little effort gets him winded. He has to be supported now when he walks down the hall, and he sits to brush his teeth. He’s sleeping a lot, but never for more than 4-6 hours at a time, as he wakes due to breakthrough pain or wheezing. On Wednesday, Kevin was having a bad morning after a very restless night with lots of difficulty breathing. We called Rabbi Bruce, and he was here in minutes to pray with and for Kevin. Since then sleeping at night and breathing have improved overall. Even though Kevin still wakes up, he is now falling right back asleep after taking meds. or nebulizing, instead of staying awake like he had been. His nurse was here this afternoon, and she will talk to the doctor about increasing the steroid dosage in hopes that that will further alleviate the wheezing and muscle pain and maybe help increase his appetite as well.

In daytime, Kevin dozes some, but is fairly alert and cognizant when awake. We continue to have visitors, and though he doesn’t always interact fully, Kevin tends to rally when there are people around, becoming most animated when showing pictures or telling stories about his life. In addition to frequent visits from neighbors/friends/Beth El members, we’ve enjoyed recent visits from Jeff, Kevin’s previous boss at Time Inc. (Jeff brought an iPad with him; Kevin perked up to play with that!) and Neil and Debbie, old friends from Philly. (I’ve known Neil since we were teenagers and Debbie since our early twenties.) We are blessed to have so many caring people in our lives.

Speaking of caring people, since the last posting, we’ve enjoyed more visits from family. Kevin’s sister and her husband returned to Oregon on Saturday 11/6. The next day, my family – Mom and Dad, brother Rohn and sister-in-law Wendy, my niece Alanna, her husband Justice and my nephew Zach — rented a mini van and drove up together, bringing a yummy dinner with them. After a really nice visit, all but my parents returned to Philly. Mom and Dad stayed through Wed. morning. It was good being with my family as I haven’t been able to get to Philly to see them as often as I would like.

The following Thursday evening Kevin’s nephew Scott, his wife Tausha and Kev’s niece Hannah came for a long weekend. We asked them to go and play in Manhattan during the day and come back to regale us with pictures and tales of adventure in the evening. We’ve had the joy of introducing Scott and Hannah to the great playground of Manhattan on previous visits, and now it was their turn to share their love of the city with Tausha, who was seeing it for the first time. On Sunday, the kids (they’ll always be kids to us) announced that Scott wanted to stay with Kevin while I went into the city with the girls. The weather was gorgeous, and we walked for hours in Central Park, went to Zabar’s and saw a museum exhibit while Kevin and Scott bonded by watching Henry V, one of Kevin’s favorite movies. Most meaningful was when Kevin gave both Scott and Hannah treasured items that in some way signify a special joy or memory he shares with them; there were tears, hugs and lots of love.

Even though I no longer have house guests to feed, friends and congregants are still providing small prepared meals to help keep the caregiver healthy. I’m so grateful because not being on a fixed schedule, I sometimes forget about meals until it’s meal time and I’m hungry. When that happens, there’s always something at the ready that I can just heat up. What a blessing!!!

Hospice has been great. I can call anytime with any question or concern, and they either put me right through to the person who can help, or someone calls back within the hour. A nurse comes twice a week to check on Kevin, order any meds that are needed, provide tips for ways to make Kevin more comfortable, and answer any questions we have. If needed, she is available to come more often, and there is always a nurse on call for any emergency.

After not being happy with the first aide hospice provided, we asked our congregation to pray that G-d would send us someone wonderful. That prayer was answered with the arrival of Rosalee, who is not only capable and attentive, but sweet and loving. She’s here for four hours every weekday afternoon, which enables me to get out to run errands, take Elke for long walks and romps in the park, or nap. She loves Kevin and refuses to let her agency reassign her. She told me today that she has never thought about or cared about another patient the way she does with Kevin.

G-d has continued to be near to us in some very tangible ways. Though this is a very sad time, we are so grateful for spiritual strength and peace in the midst of it all. We keep hearing that there are people praying for us every day, and we feel sustained by those prayers. Thank you. Thank you. Thank you!

I just want to say that I'm sorry for not being able to reply individually to all the emails and voice mails, but I read and listen to all of them, and share them with Kevin. Your kind words continue to mean so much to us.

Update from Roni

It's been awhile since we've updated, and there's lot's to report. I decided to go with the unabridged version, because there are so many people who should be acknowledged and thanked for the ways they have upheld Kevin and I in this difficult season, and I want to do that publicly. We would be overwhelmed -- in a bad way -- if not for the many people who are helping to ease our burdens. Instead, we are overwhelmed -- in the very best way -- with the love and support being showered on us. So, the first part of this blog is about all of the wonderful people in or lives, and the second part (keep scrolling down, there are a LOT of wonderful people) is an update on how Kevin's doing.

WE ARE RICH IN FRIENDS AND LOVED ONES

10/8 Kevin's brother Kent and his wife Terri arrived on the Red Eye from Oregon to spend a long weekend with us. Rabbi Cohen's family joined us on erev Shabbat for a meal and a wonderful evening hanging out with family and friends who have become family. Thanks Cohens for bringing challah, wine and dessert. Thank you Kent and Terri for making the trip, especially taking the red eye here and back to make it happen. We're still holding onto the wonderful memories we made together.

10/16 We hosted a movie night. 15 people (including 3 of the most adorable babies ever!), mostly from Beth El (our Two-Testment synagogue), came to watch the classic comedy Frisco Kid. It was a night of laughter and love and enjoying the company of people who have in shared in our joys and challenges -- and we in their's -- over the years we've been in NY and part of Beth El.

10/19 Our neighbors down the hall (our dogs are bffs) made a delicious dinner and brought it over. Thank you David and Nina! The six of us (that includes the dogs) had a wonderful evening just hanging out, laughing and getting to know each other better. We are blessed to have many caring, neighbors who keep saying "anything we can do..." and mean it.

1o/22 We hosted an open house in the afternoon. It was planned last minute, so not many could attend, but we were very touched that my co-worker David who has become a dear friend and his wonderful wife Cathy came. Thank you both for taking the time, despite Cathy's own health issues. And it was wonderful to see friends Larry and Mary with whom we bonded during Barbara Lee's (my friend and Larry's sister) battle with PMP. Thanks Mary for the gift of delicious and healthy chili (and the pot it came in!), which has made several easy meals for me and guests. Neighbors and Beth Elians Randy, Tammy, Brian and Rabbi Bruce, thank you so much for giving up time on your VERY busy weekend to spend with us, especially Rabbi Bruce who performed a Bat Mitzvah the day before and Brian who threw the party for his daughter, the Bat Mitzvah girl. A special thank you to our Beth El adopted "sister" Mee-Ae for schlepping all the way from Queens to come. Thank you so much Rebetzin Debi for taking me shopping, picking up yummy treats and helping me prepare beforehand -- couldn't have done it without you.

10/25 Kevin's Dad arrived from Oregon. I don't even know how to describe the special father/son male bonding that took place over the following days. Kev's mom joined us on Friday 10/29, and the time together got even sweeter. Mom brought a booklet she made containing stories and pictures of her favorite memories of Kevin -- what a treasure. On Monday they had to return to Oregon, and we said a tearful "goodbye" though it was more of a "see you later", as our shared faith gives us the confidence that we'll meet again in the next life and spend eternity together. There are no words to describe the deep, deep comfort that assurance gives.

11/2 We didn't have much time to be sad about Mom & Dad leaving before Kevin's sister Kathy and her husband Roger arrived last evening. Kathy's gift to Kevin is that he gets to boss his big sister around for a change (she admits it was the other way around when they were growing up). And she's already jumped right into the doting care-giver role. Roger's typically bouyant persona -- he literally hums happy tunes all the time, and has since I've known him -- just makes me smile.

Kathy and Roger will be with us through Sat morning, then my brother, his wife, my niece and her husband and my nephew come from Philly for the day on Sunday. My parents (also in Philly) will come with them and stay with us through Thursday morning. Thursday evening Kevin's nephew, his wife and Kev's niece come from Oregon and stay until Tues morning.

Whew. That's a lot of love to take in. Lot's of support makes having all that company a stress-free joy.

I've been able to take family medical leave -- at first a day or two a week, but full time as of 10/26 -- so that I can concentrate on caring for and being with Kevin and all these loved ones. My bosses and co-workers couldn't have been more supportive and have taken so much off of my plate in order to reduce my stress. I'm grateful to work for a company that cares for its employees and to have managers who are wonderfully caring people. Thanks everyone for the pitching in, the hugs, and the words of encouragement. It means a lot.

I don't know what we'd do without our Beth El family. Beth and Debi brainstormed with me how congregants anxious to help can do so, resulting in Beth coordinating meals to be delivered. The first complete meal donated by a Beth El member arrived Monday and last night I was able to just heat and serve, which meant that the four of us could be together, rather than spending time away from Kevin cooking and cleaning up. Debi also suggested reaching out to April to coordinate rides to and from the airport; April got everyone's flight schedules from me and made it happen. Rabbi Bruce, who is also our neighbor, has come over to pray, and help out by everything from bringing us a fan and portable air-conditioner to picking up a case of Ensure from Cosco, and has made himself available 24/7 for anything we might need from a rabbi or a neighbor. Debi's helped out in many other ways, including spending hours searching the web and scouring Whole Foods to find and purchase the most tempting, packed-with-nutrients-and-calories foods on the planet, resulting in Kevin being able to stop losing weight! Everyone else is praying up a storm, calling, visiting, offering things we hadn't even realized we wanted or needed... All this from a small, geographically disbursed shul that shows its faith by it's deeds. You guys Rock!!!

Special shout outs to: my neighbor Nan who picked me up in Manhattan and brought me home when I had to have a minor medical procedure a few weeks back and calls to see if I need anything; Michael B. who saw a need one day, and ran the errand to fill it the next; Danna, our sometimes dog-walker who offered to walk Elke anytime at no charge; everyone who has sent notes, cards or called -- you do so much to raise our spirits.

Okay, here comes the harder part to write...

HOW'S KEVIN?

The honest, short answer is that Kevin's health has been declining. Pain continues to be the enemy -- just when we think we have it under control with medication, the meds cease being effective, and have to be increased. Kev's now on some heavy-duty doses of some heavy duty stuff. His pain is caused by: referred pain from sites of tumor, so as tumors grow, pain increases; an increasingly sedentary life as he grows weaker; the vicious cycle of muscle tension caused by pain.

Disease progression and opiates for pain conspire together to weaken Kevin. When Kent and Terri were here in early October, he was able to walk with us over ten blocks to a restaurant for lunch and back home again. Now because of risk of falling, he's been instructed not to walk unaccompanied in the apartment. A wheelchair has been ordered for any trips outside. I'm hoping it arrives today, and we can go together to take Elke to the dog park, something he hasn't been able to do for awhile.

He has terrible dry mouth, and his appetite has been steadily decreasing, so his "meals" now consist mostly of protein bars, meal-repalcement drinks and ice cream. Fortunately, the thrush that had him eating almost nothing for a few days was caught early by the hospice nurse, and is clearing up, enabling him to take in more calories. His weight has stabilized for the past week at 166, down from 189 back in May. Kevin is 6'2", so 166 is skinny; he's also lost a lot of muscle tone.

His breathing has become shallow, and he now sleeps with oxygen tubing in his nose, and uses the oxygen sometimes during the day as well, when his breathing becomes labored. He also wheezes so loudly at night sometimes, that the sound of it keeps him awake. Hospice has ordered a nebulizer to help open up his airway, and we pray it gives him relief.

As difficult as it's been for Kevin to deal with the pain and the decreased independence, his strength of character continues to inspire me. I never do anything for him for which he doesn't say a heartfelt "thank you". At bedtime when we read scripture and pray together, he leaves the praying about his well-being to me; when his mind is not too foggy to pray, his prayers are for others or for how he can be used to bless others. Last night, this man who has so much to be sad or angry about, began his prayer thanking G-d for a long list of blessings. You who read this blog and send words of encouragement were on that list. Wow, he makes me proud to be his wife!

Still firmly intact are Kevin's sense of humor and brilliant wit, and our home is regularly filled with laughter. We both continue to strive to live in, and treasure, the moment and leave the future in G-d's hands.

We treasure you more than words can say.

Roni