Unveiling

Yesterday we had the unveiling of Kevin's headstone at Calverton National Cemetery, where Kevin chose to be buried. It's a Jewish tradition for very intimate friends and family to visit the grave for the first time within the first year of mourning — typically close to the end of that period — to hear scripture read, to pray together and to share words of remembrance about the loved one.

Kevin's family was not able to make the trip nor were my parents, but they were there in spirit, and members of our spiritual family were there.

I told how Kevin thought about an epithet, and then chose not to have one. Kevin wrote beautifully, especially in this blog, but he needed lots of processing time to access his thoughts and feelings and put them into words. And sometimes, after lots of processing words failed him still. In the eleven months and eleven days since Kevin died, I have come to appreciate how some things take lots of time to process, and how still, some feelings are too deep for expression and some experiences and relationships too complex for summation. It's why I haven't kept up this blog the way I thought I would.

But we who were there did try to put some of how we felt about and thought of Kevin into words. We remembered Kevin's relationships with us. We spoke of the his consistency of his character, the heroic way he fought his battle with cancer, and the peace and grace he showed in his last days. We remembered how he made us laugh. I recalled how he loved war movies and was moved by the way a true soldier faces death — with a combination of acceptance and defiance. He became what he admired, and then he surpassed it. The three of us with him in that room when he took his last breath had the same feeling of not so much watching someone die, but watching someone leave joyously — though coupled with the pain of leaving us behind — for the ultimate adventure. We felt G-d's presence in that room, and yesterday, we remembered that, too.

For me, yesterday was a significant part of the very difficult process of saying, "goodbye" — wrestling with the letting go and holding on that is part of mourning... By going to the place where is body lies in the ground, I tried to get my brain and my heart to comprehend what is still at times unfathomable — he is no longer here. In this lifetime, I will never again converse with him, touch him, see him — only in my memories. And I'll never again make new memories with him. My heart continues to break over that. But also in that peaceful, orderly setting, we comforted ourselves with the knowledge that Kevin is now at peace. For him, all now makes sense, all questions are answered, chaos, turmoil, pain and anguish are forgotten.

After the graveside ceremony, we gathered at my home and shared more memories. Feeling the need to remember how alive Kevin's spirit now is, I read a written exchange between me and Adrian, Kevin's best mate from Australia, that occurred on 12/19/2010, nine days after Kevin's passing. I'd like to share now with all of you.

To me, from Adrian: Something I wanted to share with you was that on the day of Kevin's passing, I was at work when a butterfly flew around my [ground moving] machine and up and down the door as if trying to tell me something. I guess at the time I was thinking about Kevin a lot and for some reason when I sighted the butterfly, I became a bit emotional thinking about the Indians and the birds that they see when someone passes.

Next day we learn of Kevin's passing and I share my story to Marg about the butterfly and lo and behold another arrives at our door doing exactly the same thing. This brought us both to tears and the next day at church we shared the story and yet another arrives at the door of the church doing the same thing!

Now thinking I'm going a bit mad the other day after breakfast, I went outside to put my boots on and another came and landed on my hand and just stared at me.

Did Kevin have an affiliation with the butterfly clan of the world or am I really going mad?...

My reply: Thank you for sharing this, Adrian.

Though Kevin had no more connection to butterflies than he did to other beautiful things in nature, I do think there is REAL significance to your "visitations."

As Kevin's body began to succumb more and more to the ravages of the disease, he began to become more and more curious about how his resurrected body would look, feel and operate. We talked about it extensively during a day when he rallied physically, just a week before he died. If you listen to the song he chose for the funeral, you'll know he was really looking forward to shedding his old body.

I think that the message [of the butterflies] is one of comfort for us. Not only is his new body free from pain and suffering, it is as changed as a butterfly's is from a caterpillar's. He is experiencing a new existence that is unfathomably light and free compared to his earthly body.

When I called my mom on Friday morning to tell her that Kevin had gone home, she told me that she had had a dream that morning in which Kevin was telling me he had invented a new greeting card with a video embedded in it. He said that what was unique about it was the content of the video — him kicking his heels up and dancing like crazy — something no one had ever seen before. (That's for sure!) My mom woke from her dream and looked at the clock; it was 5:03 a.m. Kevin breathed his last breath at 5:00 a.m.

Yep, butterflies are free, and so is Kevin. The two pictures I now have of him — dancing freely and flying with a lightness of being — do ease the pain of loss. I hope they do the same for you....

No, Kevin is no longer here with me. His body rests at Calverton, but he is not there either. He went off on the ultimate adventure where he is no longer encumbered in any way. He is freer than he ever imagined he could be. Reminding me of her dream, my mother sent me this poem the other day:

When we are healthy, we walk

When we are decrepit, we shuffle

But when we are beyond ourselves with vitality,

We dance!

— Eugene Peterson

A Eulogy After All

It’s been six months and 9 days since Kevin’s passing. During that time I’ve thought often about reaching out through this blog. There are so many things to say, and I kept getting hung up on which things to say first and how to say them.

When I thought about writing a eulogy for Kevin’s funeral, I found myself unable to. I found it impossible to sum up a person who was to me in many ways enigmatic and full of surprises, even after so many years together. And I still don’t know how to really convey his “Keviness.” One only had to know him just a little while to see the best of his character: his courage; his faith; his absolute honesty; his good humor – to the very end of his life he delighted in laughing and making others laugh; his sense of duty in being a responsible citizen of his congregation -- taking seriously the preservation of sound religious doctrine, and his country -- arguing for a the conservative government he believed to be best; his boyish playfulness; his love for me and commitment to our marriage and my well-being; his love for his friends and family. But he was more than all of that. Even now after six months of processing, trying to describe Kevin seems to diminish him somehow. And talking about him in the past tense is more difficult than I can convey. He was Kevin, and I loved him, and I miss him terribly.

But there are stories about his journey that should be told and that those of you who have followed his blog deserve to hear, and so I’m going to try my best to finally tell them in a way that will do the man and the experiences justice.  

I wish that somehow all of you could have viewed him in his final weeks. Throughout the years we were together, Kevin struggled with emotional aloofness, admitting freely to me that he related to the Paul Simon lyrics, “I am a rock, I am an island.” Retreating alone to “his cave” was his go-to defense mechanism when things got emotionally difficult or confusing. It was something he worked hard to overcome during our marriage and especially the last few years of his life. Sharing his journey on this blog became one place – a very important one -- where he learned vulnerability. In sharing his inner struggle with cancer, he discovered that what came back to him were levels of love, support and friendship, and the joy of helping others, that he hadn’t known when keeping his cards so close to the vest. In the last few weeks of his life, as he grew weaker, he became more and more vulnerable and open. The best way I know how to describe it is that his remaining emotional guardedness melted completely away, and we saw Kevin become “freer and freer” and softer and softer as he drew nearer to the end of his life.

He hated that he could no longer do things for himself such as walking alone to the bathroom or washing himself, yet he graciously allowed those of us who cared for him to express our love by doing for him. He said “thank you” for every little thing, and his eyes just shone with love and gratitude. What happens to the body in the end stages of cancer is frankly degrading. Kevin chose to face it with an acceptance and humility that somehow took away its power to be humiliating. I still marvel at that.

On the Friday morning one week before he died, Kevin rallied. He brought the chair out of reclining position, sat up straight, and gained back the breath he needed to speak. He asked me to bring his jewelry box from the bedroom. The wedding ring we’d bought a few years ago when the original one could no longer be re-sized as he gained weight was now too loose to stay on, and he wanted to put on the smaller one. And he wanted to wear the diamond stud earring I’d given him as a wedding present. Then he began to take me one-by-one through the things in his box that meant something to him: his sergeant’s stripes and military bars; the kippa he bought on his first trip to Israel, which his father now has; the pictures of me and his mother that were in his wallet… He talked about what things he wanted to leave to certain people. We reminisced about our life together: the wonderful travel adventures; the marriage lessons we wish we would have learned sooner; how grateful we both were that we’d found each other; how sad we both were that he had to go. I promised him again that I would be okay, that I’d learn to take care of myself in the areas where he’d taken care of me and that I’d ask for help when I needed it. (Mac experts should anticipate an occasional call.) We sat side-by-side holding hands, looking into each other’s eyes and smiling as we spoke. After a couple of hours he tired and the shortness of breath returned, taking his voice away. He sat back in the chair and reclined while I read to him from the book of Psalms, and he smiled to hear the familiar words that had instructed and comforted him throughout his lifelong walk with God.

I read Ps. 19, which had always been his favorite. When I read verse 9, “The fear of the LORD is clean, enduring forever; The judgments of the LORD are true and righteous altogether.” I couldn’t help but wonder how those words sounded to him now that he was on his deathbed, despite praying fervently to be healed, as he had been 7 years before. How did God’s judgments seem to him now? I looked at him and asked simply, “Is this still your favorite Psalm?” He smiled and beamed as he nodded “yes.” And I could tell that somehow the words had taken on an even deeper meaning for him. In his eulogy, Rabbi Bruce spoke of Kevin’s love for the military and his soldier’s sense of duty to follow a commander into harm’s way, no questions asked, as long as the cause just and the commander trustworthy. And that combination of devoted duty and trust was what I witnessed when Kevin, knowing his death was approaching, affirmed his whole-hearted agreement with the words “The fear of the LORD is clean, enduring forever; The judgments of the LORD are true and righteous altogether”. The joy and certainty of his affirmation astounded me. It was a holy moment, and it told me everything I needed to know about where Kevin was headed for eternity and the peace, and yes, even eager anticipation, he had in preparing to meet such a King face-to-face.

Many who were in our home in those last weeks and days – including seasoned hospice workers -- remarked that they never saw anyone face death with such peace and courage. Kevin was not a “preacher,” but he who shared so intimately throughout his journey would want others to know that death can be faced that way. Psalm 19 ends,

“Who can understand his errors?

         Cleanse me from secret faults.

 Keep back Your servant also from presumptuous sins;

         Let them not have dominion over me.

         Then I shall be blameless,

         And I shall be innocent of great transgression.

 Let the words of my mouth and the meditation of my heart

         Be acceptable in Your sight,

         O LORD, my strength and my Redeemer.”

Kevin wasn’t perfect. He was human. He did, and neglected the doing of, things he regretted. The words of his mouth and the mediation of his heart were not always acceptable in God’s sight. He wrestled with God and worked through some anger with him for sure. But I know that those above verses expressed the never-ending underlying prayer of Kevin’s heart. And in the end, it was evident to everyone around that God was Kevin’s strength, and Kevin knew he was redeemed.

I think that what made the manor in which Kevin faced death so extraordinary was the fact that Kevin arrived at the place of ultimate testing having done his homework. Kevin could never comprehend why people never took the time in life to ask the hard questions about God and faith and life in order to get to a bedrock foundation that goes beyond “feeling” or “sensing” or just “taking it on faith” or, “well I just think…” He knew that wasn’t good enough. Our bookcase contains a wide selection of books on comparative religion, and includes not just bibles, and books on traditional and Messianic Judaism, but a copy of the Koran and the Book of Mormon – Kevin read them all. He considered “all paths lead to God” a copout, and studied to know what was true, and what wasn’t. His favorite book was one he purchased in his early 20s entitled In Understanding Be Men. It’s a book that takes the reader through the central teachings of Two-Testament faith, challenging the reader to ask the hard questions about them. One does not emerge from that type of study with a casual faith. Kevin knew with a certainty what he believed about God and His Messiah, and why.

When it came to faith, and most things for that matter, Kevin was always more comfortable with facts and precepts than subjective feelings and experiences, but even though Kevin was all about objective truth and testing spiritual experiences, his “homework” went beyond intellectual searching. He invited God to lead and guide him, always praying for God to change his heart, reveal his will and give him the strength to obey it. As things became more emotionally and spiritually challenging for us, our prayer became simpler, “God, meet us where we are.” And God did. (Those stories in another post.) My point is that it was clear to me that Kevin faced eternity with such peace, not only because of what he believed about God, but because of his relationship with God -- he knew, loved and trusted him.

I can think of no better way to honor Kevin’s memory and legacy than to suggest you read Psalm 19 and ask God, even if you’re not sure if there is one, to reveal to you how a life can be lived in agreement with those words in a way that produces joy, even in the valley of the shadow of death. Asking the hard questions, and searching out the answers that might upset one’s comfortable worldview is not a challenge for the faint of heart, but I think Kevin would double-dog dare you. I think he would want you to face the final test having done your homework.

Well, this started out as just telling a story, but I guess it turned out to be a eulogy of sorts after all. There are more beautiful stories yet to tell, but this post is long enough, and I need to dry my tears, get back to the present, and take care of myself as I promised Kevin I would. But I won’t let six months go by before I post again.

Thank you to those who took the time to read this, and who continue to hold Kevin in your hearts.

Roni

Kevin is at peace

At  5:00 a.m. ET on December 10, 2010, Kevin Kersey, my husband, partner, hero and best friend for nearly 19 years, was released from his 7-year battle with cancer. He is now at rest and cancer-free. His passing was peaceful and with minimal pain with me at his side, attended by the most loving of friends. Extraordinary peace was evident to all who witnessed his final days and hours. Kevin's final words were to tell me "I love you," and his last action was to lift his arms towards Heaven.

Funeral services were held Monday, Dec. 13, 2010. The eulogies from Kevin's funeral service, as well as the song that Kevin chose to be sung were recorded and loaded onto Beth El's Website. The recording can be downloaded from here: http://bethelnyc.org/category/sermons

Kevin requested that in lieu of flowers, donations be made to any of the following charitable organziations to which he was dedicated:

Congregation Beth El of Manhattanwww.bethelnyc.org

The Patients' Fund for Creighton University/Brian W. Loggie, M.D. PMP Cancer ResearchGo to http://www.creighton.edu/development/makegiftonline/index.php  Choose "Outright Gift"   On the next page fill in the starred fields. Under Gift Designation check "Other Designation" & fill in "PMP Patient's Fund - Dr. Brian Loggie". Under Special Gift Instructions fill in "In memory of Kevin Kersey". On next page under affiliation choose "Friend/Donor" and complete information.

Jewish National Fundwww.jnf.org



May Kevin's memory and legacy continue as a blessing in the earth. I will do my best to continue to use this blog as he did -- to inspire courage, faith, grace and hope in the face of adversity. I had the very best example...


Love,


Roni

December 2 Update

Last night was the first night of Chanukkah. This was the first year of our marriage that Kevin and I didn't sing the candle-lighting blessings together. Kevin's shortness of breath has reached the point where talking is very difficult, and singing is impossible. I sure missed his off-key voice.

Even though his breathing is shallow and he sometimes has difficulty getting his breath, the good news is that the loud wheezing that drove him crazy has disappeared, thanks to drugs and prayer. Other than that, this is a wasting disease, and there is no way to put a positive spin on what is happening to Kevin's body. It is helpful to remember though, that the spirit can rise above physical limitations, and Kevin's spirit continues to do so.

The steroids helped his appetite to pick up for a day or two, but now he is taking in little more than protein drinks and continues to lose weight and grow weaker. The ten or so "normal" steps to the bathroom from his chair in the living room had become arduous, as it took more and more small shuffling steps to get there. So a couple of days ago he asked to be wheeled to the bathroom in his wheelchair from now on, as the short walk just had him gasping for breath. He needs my help lifting him in and out of the chairs, as he is no longer strong enough to push himself up unassisted. That gives me a change to give him a hug once I get him to his feet.

Kevin is sleeping more. Some days he just nods off several times for 30 mins to an hour at a time, other days, it's more like his sleep is interrupted by a couple of hours of wakefulness at a time. When he does sleep, it's often very deep and when he wakes, he feels like he's been asleep a long time. Earlier this morning, he woke after sleeping for about an hour, looked at the time and exclaimed, "Only 9:00!" then tongue in cheek, "Have you been giving me time-slowing drops?" I sort of have -- hospice has me giving him morphine sulfate drops to help his breathing when it gets really bad.

He is still lucid most of the time when he's awake, but doesn't have the energy to do more than watch TV or movies with simple plots. A couple of days ago, we shared some good laughs watching Big together, and yesterday Rabbi Bruce came for a few hours to watch Band of Brothers (Kevin's favorite mini-series ever) episodes with him.  A couple of weeks ago friends helped me separate our sectional so that I could put the love seat part right next to Kevin's reclining chair. That way I can be comfortable and sit and hold his hand or snuggle up to his shoulder while we watch TV. He's in that chair 24/7 now, preferring it to the hospital bed for sleeping. (Best investment we ever made -- HumanTouch ergonomic recliner!) Elke, the angel-dog, can climb into his lap from the adjacent love seat, and does so regularly when she hears labored breathing. She just snuggles in his lap and comforts him.

A few days ago, I asked Kevin what he'd want to say the most if he could write in his blog. He said he'd want you all to know that he's not afraid. The panic attacks he was having awhile back were not due to a fear of dying, but rather due to a fear of hospitals (exacerbated by drug-induced anxiety). When he started feeling weaker, he was afraid he would end up in a hospital with IVs stuck in him and never leave. We are so grateful, that instead, we can do home hospice. He's told me often that he doesn't fear death. When we talked a few days ago about the peace he has, he said he's been thinking of the scripture that assures of eternal life for those who accept Messiah's atonement:

"So when this corruptible has put on incorruption, and this mortal has put on immortality, 

then shall be brought to pass the saying that is written: 

‘Death is swallowed up in victory. 

Death, where is your sting? 

O Hades, where is your victory?’” I Cor 15:54-55 

I asked him if the next life was feeling more real to him. He answered that he has a sense that he's going home, but he still wonders what it will be like -- if we will have bodies that walk around or if it'll be more of an astral projection kind of thing. I think what he really wants to know is if there will be Harley riding in heaven. (I just read this to him, and he smiled and nodded vigorously at that last sentence.) I'd like to think so. Or maybe, the freedom and joy he's always felt when riding is just a foretaste of the freedom and joy that is the normal state of being in heaven. Either way, Kevin's always been up for an adventure, and I think he's up for this one, too. saying that even if he doesn't know what heaven will be like like, he knows it will be good. (He just nodded again, and he affirmed that this paragraph captures what he would want to say.) He's also greatly comforted by the certainty that his physical suffering will be over, and that he will one day see his loved ones again.

We continue to count our blessings, especially all the incredible support we receive. Rabbi Bruce and Debi were at our door in minutes on Sunday afternoon, and gave up hours of what they'd had planned for the day to be with us, after I called them, scared and sad -- it was the first time I'd experienced Kevin sleeping so deeply that he couldn't be roused. Kevin's family is very THERE for us and with us, even though they are in Oregon. thank God for modern technology that allows us to stay close. My family is also very supportive and wanting to help. Beth El continues to be like a family to us in so many ways, and our neighbors continue to be shining example of neighborliness. 

We also -- as always -- appreciate all the emails, blog and facebook comments, and especially the prayers. I especially want to thank those of you who have written to say what Kevin has meant to you over the time you've known him. It's gratifying for him, and me, to know that he has been able to touch lives.

Happy Feast of Dedication (Hanukkah). Whether you are Jewish or not, it's a good time to reflect on the people and things you value in life and how dedicated you are to them. God continues to affirm to me throughout this difficult time why he is worthy of my dedication. More about that in the next blog.

Best,

Roni

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

Another Anniversary

We just passed another anniversary.

October 8th, 2003 - Seven years ago from the 8th, I went into the ER with severe abdominal pains. We ended up staying in the ER for about 16 hours, and that includes being moved to another hospital where my doctor at that time had admitting rights.

October 9th, 2003 - Seven years ago from that date, I had an emergency surgery for the severe abdominal pains. It was a three hour surgery and I woke up with an NG Tube, a temporary ileostomy and about a 10 inch scar running down my stomach, and what eventually became a fistula.

It would be a few more days before we were told I had cancer.

I still believe I shocked a few people when I walked out of that hospital, and even came back a few weeks laters. I'm sure there were some who believed that I would probably never leave that hospital alive.

Not only did I walk out of that hospital, I'm still alive, 7 years later with a lot of life lived during those years. I believe our goals should always be to prove the doctors wrong. :-)

Roni's Musings and Reporting

Kevin's last posting (let me just say, what a man!) reminded me of a poem I discovered early on in our Journey:

What Cancer Cannot Do

Cancer is so limited . . .
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the Spirit.
It cannot lessen the power of the resurrection.

~ Anonymous

I posted that same poem to this blog in November 2003. At the time, it was an inspiring ideal. Now I understand that cancer tries to do many of these things, and will, if you give over to it.

Though Kevin's been a bit rawer and more transparent than I, we tend to post here when we've come out on the other side of challenges. But I'd hate to give the impression that we haven't struggled with the "demon" that is cancer and the "personal demons" that rise to the surface when one faces difficulties. But through it all, I've seen Kevin -- and felt myself -- upheld by the foundation of our faith and the loving hands of G-d. Sometimes it has felt as though we were in free fall, but never as though we'd fallen into an abyss. Through grasping (sometimes after grappling with) the truths that G-d has lovingly revealed through scripture, we've always come back to that foundation with fairly soft landings. I am so grateful for the truths that have guided us, and the Hand that has held us. I'm so grateful for support from so many people G-d has used to help us in so many ways. A long-time family friend put it beautifully when he said, " With [Kevin and Roni] we can be only thankful for all of the helping hands--social and medical. With them we rest in Him Who only has unfailing, heavenly hands.”

So, that's the musings part of my posting. Now on to the reporting part.

I realized from some comments we've received that many people equate hospice with very final "deathbed" stage of deterioration. Let me assure you that Kevin is not an invalid. Hospice can be involved early on, as soon as one chooses to discontinue treatment, and that's what we've chosen, in order to enhance Kevin's quality of life. For example, a good hospice will advise on the appropriate amount of activity and exercise to keep the patient strong and limber without taxing their reserve. They may teach therapeutic massage to deal with aches and pains from a more sedentary life. etc. The point is that Kevin is still mobile, still has his wits about him -- though he needs a bit more help with remembering words and editing when he writes than before. He's lost some weight and he sleeps more -- about 40% of a 24 hr. period -- and rests a lot while awake. But he also has moments when he's feeling pretty well and continues to help out with light household chores, runs short errands, takes Elke out, and cracks me up with his quirky wit on a regular basis.

"You Beat This!"

Now before you all get excited from the title of this post and think that the cancer is gone -- it isn't -- let me tell you why my oncologist told me that the cancer didn't beat me, but that in fact, I beat it.

Those who have been following my blog for awhile will know that part of my original diagnosis is what is referred to as "Signet Ring Cells." It is important to know this because some of the doctors that we have met did not believe us when we told them I had Signet Ring Cells (SRC). One doctor said I probably misunderstood, because if the Oct 2003 diagnosis of SRC was correct, I would not be alive today. A couple of doctors even insisted on doing their own pathology reports to prove me wrong. You see, SRC is the more aggressive of the colorectal cancers; and people diagnosed with it usually don't make a year. As for me, tomorrow will be the 7th year anniversary of when I went to the hospital complaining of severe abdominal pains. Needless to say, for the past 7 years more than one doctor has been stumped as to why I am still alive. It is also needless to say that we believe the reason is answered prayers, aligned with the Will of G-d, and for whatever reason, He has decided to keep me around. Just by staying alive for seven years, I, beat the standard prognosis.

In those 7 years I have had 5 surgeries related to cancer, been septic, had numerous rounds of chemo and 5 weeks of radiation, weeks of recovering from the surgeries, learning to deal with an ileostomy for 9 months, the side effects of the chemo and radiation, countless blood tests, and I can't even remember all of the CT/PET or just CT Scans. So while, yes, I have survived the cancer, it has not been an easy road, and I have the scars to prove it. Both emotionally and physically. Every scar I have is another reminder that I beat whatever this cancer could throw at me.

Let me take this opportunity to say that because of the success of those treatments, I have also had the opportunity to enjoy life. Roni and I have traveled twice to Israel with good friends for the Bar Mitzvah of each of our Rabbi's sons. We've been able to take vacations in Arizona (one of our favorite states), The Bahamas, Jamaica, the Florida Keys, Vermont, a week with Roni's and my parents in Virginia, a week long cruise in Alaska with my family, a week in the Wisconsin Dells with my family and just recently, two amazing weeks in Australia where I was able to reconnect with old friends and show Roni where I grew up during my high school years. And I celebrated my 50th birthday in New York with close friends. So, in continuing to enjoy life, I beat cancer.

I've also been able to help others who have been diagnosed with this disease through our on-line support group and through this blog, and please G-d, may they continue to help others even when I am no longer able to contribute to them. Which brings us to the reason for this post.

Yesterday, Roni and I met with my oncologist. The same person who just 2 weeks ago told us what our options were. She asked if I had made up my mind about what I would like to do. I had made my decision. After much thought and prayer, discussions with Roni, counsel from trusted sources, I had made the decision to forgo any further treatment and start with home hospice care. The doctor understood the decision, and explained how home hospice would work and how things would now progress.

Last night I spoke to my family to let them know of my decision. My sister asked if they gave me an expiration date  :-). With a chuckle, I said no. None of us really know how long I have. We believe that with people's prayers and G-d's intervention, I have already lived longer then any of the doctors have thought I likely would. I know people will continue to pray and we believe that G-d will take care of things in His timing. So we are going to leave those details in His hands.

As we were getting ready to leave the appointment yesterday, the doctor looked at me and said (I didn't have a tape recorder on me, so I'm paraphrasing here), "Don't think that this cancer beat you. You have lived longer than anyone would have thought. With all of the treatment you had, you had probably 80% of that time as good quality of life. And with all the people you have helped with your support group and blog, don't think for one minute the cancer has beaten you. In fact, You Beat This." I know that I didn't beat it alone. I had a "band of brothers" to fight beside me (I wrote about my team here), and we believe most of all, G-d fought for me.

Choosing hospice doesn't mean I'm laying down and giving up. I'm expanding my team to include the expertise of hospice care in order to achieve the best possible quality of life I can. We continue to pray for a miracle, and I plan to live each day enjoying life as much as possible. I want to spend time with family and friends. And I will continue to give my support where it is needed, my advice when it is asked for, and my wisdom for what it is worth. :-) That's why I won't be removing the phrase, "So far I'm winning" from the heading of this blog page. G-d is in control, not cancer, and that means that even if G-d does not perform that miracle, cancer still doesn't win!

Dwelling in a Sukkah. Physically and Spiritually.

I began writing this post at the beginning of the Jewish Festival of Sukkot. (You may also hear it pronounced Succus, which is the Azkenazi Hebrew way of saying it.) "Sukkot" means Booths or Tents. You will also hear it translated as Tabernacles. So the holiday is commonly known as The Feast of Booths or the Feast of Tabernacles. You can find it mentioned in the Bible in Leviticus 23:34.

Sukkot is the plural form of the word sukkah. Holiday observance requires that we build a temporary structure, a sukkah, and dwell in it for 7 days. This does not mean that we are to "live" in our sukkah, spending every waking hour in it. But we are to spend what time we can, sitting in the sukkah, eating in the sukkah, etc. The main point is we are to reflect on what it was like for our ancestors as they traveled through the wilderness, waiting for G-d to bring them into the land he promised them.

After G-d brought us out of Egypt as slaves, He led us to the land that He promised for us. When we got there, twelve men were sent into the land to scope it out. Two came back saying it was a great land and that since G-d had promised it to us, we should go in and take it. The other 10 however did not see it the same way. They saw how good the produce was, but that it was also filled with men who were "giants" in their eyes, and they saw no hope of ever taking the land. And so for their lack of faith, those ten men, and the people that sided with them were not allowed to enter their promised homeland. After that, G-d required all of Children of Israel to wander in the wilderness for 40 years until the generation that did not believe that G-d had the ability to bring them into their land had passed away.

So for 40 years we never had a permanent place that we would be able to call home. We lived in temporary structures. The sukkot (booths, tabernacles, tents), were a reminder that we were not home yet, we were still on our journey to what would be our home. And since our people had been in Egypt for about 400 years, no one knew what "Home" looked like or what it consisted of. Only a couple of men had a glimpse of what our home would be like. All we had to keep us going were what these two men remembered, and what we were told by G-d, that is, it was a land of milk and honey. So while we were travelers, living in tents, our final destination was some place that all but two of us had never seen and we had no idea what was in store for us when we got there.

But, we were given a promise. That promise was that when we got to this land that no one had ever seen, we would be able to stop living like nomads. We would be able to build permanent houses, plant fruits and vegetables, raise livestock, start businesses, etc. We would finally, be Home!

Sukkot is a holiday to remind Jews of our historical wandering. But it also serves as a symbolic reminder to all human beings that while on earth, we are on a constant journey. Even if we find a place to physically call home, spiritually we know that we are only traveling through, on our way to a permanent spiritual home.

Our bodies, are our "sukkot". Our tabernacles, or tents. A place for our spirits to temporarily dwell while we are here on earth in our mortal coil.

The sukkah that we build during this time of the year needs to be recognized as a temporary structure, which means it has no solid foundation. Its frame is made of wood, rods of metal or tubing and it's walls are normally made of some type of cloth or tarp. It would never meet any type of modern building code. And it seems like it is a yearly occurrence that a strong wind, or storm tries to bring your sukkah crashing to the ground. (Sure enough, while I was writing this, a giant thunderstorm moved through the Bronx. What timing!) It's not unusual to have to go out after such a storm and make some necessary repairs to make sure the sukkah will stand for the rest of the holiday.

While on earth, our body (our sukkah) is also subjected to storms, heavy winds, and tempests with the result of testing our structure and seeing if we are strong enough to withstand whatever is thrown at us. Occasionally it is necessary to go in and make some repairs after a "storm". Personally, I have had some parts of the structure broken, and have had my share of repairs. I have had to have some parts completely removed because they had been subjected to "fungus" (cancer). And as more parts are removed, without the capability of replacing them, the sukkah begins to wear down. And sometimes, as the physical structure becomes less stable, the spirit, or the "thing" that dwells in the sukkah, starts to become stronger. We begin to remember that our sukkah is only our "temporary" dwelling to be used while we are on our journey to our final home. It is not meant to be a permanent dwelling, and eventually it will be taken down and we will move into our real home.

How long will our "sukkah" hold out? How long will our journey here on earth last? None of us really know the answer to that. Like the Children of Israel wandering through the wilderness, all we know is that when we are told by G-d to stay, we stay. When we are told by G-d to move, we move.

What will our final home be like? Will it be in a land full of milk and honey? Again like the Children of Israel wandering through the wilderness, we are not given a detailed description. We are just told that when we get there, we will know we are there. We are told by G-d that if we keep His covenant with us, He will lead us there, so our job is to follow Him. Like the Children of Israel, our journey is not easy, and there are trials along the way, but there are also times of joy, and G-d's promise of having a land or home, that will be OUR home. A place where we no longer have to worry about storms, winds, diseases, hunger, fear, etc.

When we get "home", we will then be able to rest, for some of us, cancer-free, and finally "dwell in the house of the Lord forever."