A Night Out

Finally, a day/night when I felt well enough to venture into the exciting world of Provincetown (Ptown) night life. Patty, and our friends Maria and Robbyn, went out to hear Kate Clinton do her comedy routine - "Climate Change" -last night - the early show, at 7:00 - at a club in Ptown. For those of you who don't know this town, I can tell you that there's lots of activity here on summer nights, from the endless parade of people watching people, to the many shows, street theater and concerts. One year, we were walking down Commercial Street at about 8:00 at night, and a car full of tourists rolled down their windows and asked, "Is there something special going on in town tonight? The street is really busy." We laughed and said "It's like this every night in the summer."

Kate lived in Massachusetts - as a teacher, in fact - before she took her humor on the road, so I've been to see many, many shows over the years. So, being able to see her this week felt like a special treat, and being able to laugh long and loud an extra wonderful part of the package. Her humor is mostly political, and I won't try to remember any of her great lines, but she did have a section about "Things I hope never to do again before I die." Examples I remember . . . sitting on the tarmac at Newark waiting for permission for the airplane to move, enduring a 21-month presidential campaign. Like me, she turns 60 this year, so we definitely share "generational humor," and perhaps she is thinking about her mortality too because of this milestone birthday.(She's a comedienne, and I don't mean to project my situation onto hers, it's just something I thought of . . . )

Patty, in her irrepressible fashion, managed to speak briefly to Kate before the show, and tell her my story, so after the show, I got a couple of hugs and kisses and Patty took this photo of us together. I love the photo, and it was great to get out of the house and see the activity of Commercial Street. I'm pleased to report that the new wheelchair travels much more smoothly than the first we had. (Patty is still smarting from the responses to my comments about her speedwork with the first wheelchair.)

Those of you who haven't seen me in a while will notice that I'm decidedly jaundiced, and that I've lost a lot of weight. Both of those are part of my new reality. The bilirubin that creates jaundice is draining through the stents, I think, because the jaundice doesn't seem to be worsening, but clearly some of the bile is not draining. I'm struggling with my digestive system, too, both with nausea and constipation. Yuck! For the last few days, the pain has been pretty manageable.

I'm glad we are here, and I've enjoyed the change of scenery, and Patty and the kids have enjoyed the beach and town.I have not made it out of the house before last night, and that has been disappointing, but it is what it is. My life is winding down.

Pain, pain go away...

I have been suggesting that Lynne write a post to update all of our blog community of friends. She reports that she will blog soon! Besides being away in Ptown trying to relax and enjoy ourselves, Lynne has been dealing with trying to manage her increasing pain while not getting too "loopy" (her word) with all the pain medication. We are working on that.

It has been bittersweet being here. So many of the things we used to enjoy as a family, Lynne doesn't feel well enough to do, so she sends us all off to the beach, settles in for some quiet time - but the beach isn't quite the same with out her. Last night we went to one of our favorite restaurants in town, Napi's for Eli's birthday (11 yesterday). Lynne had planned to save her energy so she could go (she and Eli have a special connection) but as it was time to go, Lynne just couldn't. She needed to stay back and rest.

As I was there with the crew I was remembering all the meals Lynne and I shared at Napi's, with kids and without. It was sad to for all of us to not have her with us, but ever sadder to contemplate the possibility that we may never dine out at Napi's again....

So what to do... enjoy every moment. Enjoy the warm sun, enjoy what Lynne feels well enough to do, enjoy the memories we are making, feel all the feelings...

Thanks for checking in - keep the prayers and good thoughts coming.

Patty

Managing the Pain

Thank you, thank you, thank you, to each and every one of you who responded to Patty's pleas for birthday wishes, and for sending your love and support. It was a special treat to hear from some of you that I hadn't heard from ever before. Your stories enrich me and give me a better sense of who "we" are. I do like the idea of this "blog family," and the fact that you all are touched by my story. And mostly, I love the sense of connection and community. Our widespread belief that we are completely separate from each other is so wrong, and can cause us so much pain. Recognizing our connection and our ability to truly support each other contradicts that sense of aloneness and can provide healing to body, mind, and spirit.

So, I'm now "officially" 60 years old; a new decade! Weird. There have been many times during the last year when I wasn't sure I would live to see this milestone. Now that I have, it feels a little anticlimactic, but turning 60 surely beats the alternative!

Last weekend was tough. I just had no energy, and there was so much going on that it was difficult to participate. In fact, much to my disappointment, I stayed home from the Saturday night birthday party. I hated to do it, but I just couldn't muster the energy, even to imagine being with all of these folks I love and who love me. Sunday I made it to the family party, but only after arriving early and taking a two-hour nap into the beginning of the party.

This week finds me feeling better, with more energy to carry some of my weight around the household, and better able to enjoy friends and family, books and movies. Mary, the hospice nurse, felt that a lot of what happened late last week and over the weekend was due to the pain, and so we've been strategizing about how to get "on top" of it. We've increased the dosage on my pain medication, which seems to be working, much to my relief. I can't believe what a difference it makes! The pain I feel is not a grab-my-side-and-moan kind of pain, but rather an ache in my abdomen that doesn't let up, and leaves me wanting to close my eyes, nap, and withdraw from life. Not sure I've ever felt anything like it before. The fatigue is definitely a big part of it.

We have begun to pack and otherwise prepare for our vacation in Ptown. We leave Saturday for two weeks of sunshine and salty air. I will be taking my laptop, so I'm not planning a blog vacation, although having access to the internet is always an open question.

That's my update for now. I am definitely feeling better, happily so. Love and thanks to each of you.

Blog Readers Unite!

Shhhhh... today is Lynne's 60th birthday so I was thinking... wouldn't it be great if everyone who reads Lynne's blog today (or tomorrow) writes her a special birthday greeting, wish, blessing, hope, prayer, gratitude, or appreciation. Lynne is such a gift to us, on this the anniversary of her birth let's offer her our gifts. Let's go, what are you waiting for!!!


Her main squeeze,
Patty

Illness, Death and Community

Carrie's mother died last Tuesday night of gallbladder cancer. Carrie has a blog about her life, her mother's illness, and caring for her father until his death earlier this year, and there is a link off to the right of this page. In caregiving her parents, Carrie has been loving, devoted, and attentive. I've never met Carrie, who lives in Canada, and I probably won't meet her, but I have developed a deep connection with her over the last six months, since we discovered each other through the internet.

First, a tribute to Carrie's mom, and to Carrie. I honor Carrie's hard work over these past months, and mourn with her the loss of her mother. I haven't been in her shoes over all of this time, but I am moved by her example of love. Carrie, please know that your grief is shared.

How did Carrie and I get connected? I have a "Google search" daily for any new entries on the web for gallbladder cancer, and so when Carrie began to blog about her mother's diagnosis, I was connected to the blog, and wrote a comment. I did so because one of my goals in establishing my blog was to reach out to others who could use the links to resources and information that I gained. Carrie wrote back, and we began to read and post on each other's blogs regularly, and then I created the link here to her blog. During the winter, I wrote about the loneliness of having a rare cancer. I think that loneliness can extend to caregivers and others who love someone with this rare disease, gallbladder cancer. Connecting with Carrie has been a piece of this; connected with someone deeply and personally affected by the cancer, and sharing our experiences using this inherently impersonal and mechanical format, the internet, to create a warm and personal connection.

Carrie, I salute you. Thank you for sharing your journey with me and with others who read your blog, and your comments on my blog.

A brief note about me. Patty's post from earlier today explained a lot. Mostly, things bubble along pretty much the same. I have had more pain in the last 10 days or so, but the hospice nurse, Mary, is doing a great job of helping medicate my pain. When I'm comfortable and reasonably pain free, I feel better to do other things. I have a big weekend coming up, with two parties to celebrate my 60th birthday (which is technically Monday). Again, many thanks to all of you who support me and those of love me with your words, deeds, prayers and ongoing love.

A new wheelchair

Okay, so many of you got a good laugh at the thought of me pushing Lynne in her "transport chair" down the bumpy roads of Provincetown to the point of her saying "Patty (bump, bump, bump) could you slow down (bump, bump, bump) a bit ... I am starting to get (bump, bump, bump) nauseous." Well, to solve the "bumpyroad/fastpushing" problem we got a new wheelchair, one with a big slick back wheel for our next trip to Provincetown (this time with kids and a few friends.) We will be leaving next Saturday and hopefully will be able to stay two weeks. Mary, Lynne's hospice nurse, will be transferring her care to the local Ptown hospice so if Lynne needs anything while we are away she can get it.

Life these days has gotten pretty simple around here. Supporting Lynne as she attempts to find the right combination of drugs to keep her pain at bay and the right combination of food that she can keep down. We make outings to Rosie, Lynne's massage therapist for Reiki and reflexology. We are catching up on all the TV watching we missed out during our busy year. Lynne says that watching TV helps take her mind off her aches and pains.

Lucy and Nathaniel are out of school so that adds another challenge for the household, but so far ... so good.

In the midst of all this day to day stuff I am aware of my deep sadness at the thought of a future without Lynne, I am aware of the pain I feel for the kids who in time will lose a mom... I am keenly aware of the tenderness in the hearts of so many of you who have touched us with your kindness, support and care.

This is a holy, sacred time for all of us. Through the bumpy roads, tender hugs, pregnant pauses ... holy, it is holy. Thanks you for joining us on this journey.

Patty

Life Lessons

Over the last year, I have been contemplating various life lessons that I found myself revisiting since the diagnosis of gallbladder cancer, and I had such a vivid example of one this morning, I just had to write about it. I believe that each of us comes into this life with lessons to learn, whether small or large, practical or profound. I suspect we may bring these lessons into our very existence as we begin our lives, but it's also possible to imagine them as challenges to our maturity that we bring to our adult selves as we begin to live independent lives. I also believe that life presents us with many opportunities to learn the lessons, so that many of us in mid-life sigh and think "this again!" as we see what challenges a new situation brings.

One of my life lessons has been to learn that I am truly lovable, and to contradict a deeply held belief that I am unlovable. Now, before those of you who know me pull out a list of things you think are lovable about me, know that these lessons, these challenges, just are, come from some deep place within us, and sometimes fly in the face of a more objective reality. I know that I have many lovable qualities, but, deep inside, there is a place of me that has simply felt unlovable. What's the best way to learn this lesson? To let others love me, and in the last year, I have experienced such an outpouring of love and support that moves me to tears and so contradicts this belief that I have about myself. Now, I don't know that I needed to get terminal cancer in order for this belief to be so thoroughly contradicted, but I do know that I've never before had such a consistent and persistent series of contradictions. I have felt the love of family, friends, colleagues, acquaintances, and even strangers. An example of this occurred about a month ago when my massage therapist called to say that she'd been talking about me with another client, who wanted to pay for 4 reflexology treatments for me. This client believes in the reflexology so deeply that she felt it would help me, and want to me it possible for me to get some treatments. At other times in my life, I would have refused, but instead I gratefully accepted. And the reflexology treatments have been wonderful.

Another life lesson has been to learn to ask for help, and not to assume that I can or should do everything myself. I came into adulthood strongly self-reliant, so much so that it was difficult for me to ask for help, even when I really needed to. This year, and particularly this past spring when I was still working, I understood that folks wanted to be helpful, and that I simply couldn't do everything I had done before. So, I asked colleagues to pick up a bowl of soup for my lunch, or to run to the drugstore to pick up another set of "sea-bands" because I'd left the house without mine. And any sense of false pride that had prevented my asking for help simply slipped away. We need each other, and relying on each other and asking for help is an important piece of that. I'm reminded of the poem that Jamie posted in the "comments" section last time about how we need to see our connections with each other, and to be willing to lean on and love each other.

Another example of folks reaching out to me to fill a need is that of my quilt tops. Several decades ago, I had pieced together quite a few quilt tops, but never had time to finish quilting them and putting the layers together to make them usable bed covers. A few weeks ago, some of the women in the church asked me if they could take the quilts and tie the tops so that my family would be able to use them. I said yes, and they delivered four beautifully tied quilts this week. We envision that Patty, Lucy and Nathaniel will each have a quilt for their very own, to use or to put away.

A third, but by no means last, life lesson that I have struggled with relates to both of those. In my self-reliance and perception as unlovable, it's hard to lean on others and see myself as genuinely part of a community. And yet, on an intellectual level, I have felt that the breakdown of community in American culture has been a profound loss, and I have mourned that loss. On an emotional level, I have also felt in myself a deep longing to be a part of a community, to be held by a circle of loving individuals who care about me and my well-being, and who also care about each other and the larger world we live in. I have consciously created community with other mothers in our "baby group," formed when we were expecting our first children, and still going strong. I have sought community by looking for others who have seen themselves on a spiritual path, as I have envisioned myself on. I now belong to a church community which existed before my arrival and will continue for many, many years past my death, and I value the relationships, care, and active concern we share for each other.

So what happened this morning that made me think about all of this? I woke just before 8:00 to the sound of voices in the garden to the side of our house. Unknown to me, Kim, a friend and parent to one of Lucy's classmates, had organized a "weeding party" on this Saturday morning, and had recruited kids and parents to come weed my garden. I did need to have weeding done, and I have mentioned it to folks who have asked what they could do. I'm not capable of doing it myself right now. Kim saw a need and met it. With almost a dozen pairs of hands, they cleared out a lot of weeds, and now the garden is even more lovely. And in a single, simple act, they contradicted my beliefs about myself and life and reinforced a much most positive vision of our interconnectedness. Yes, I am lovable, and my garden deserves TLC from strong backs and willing hearts, and yes, it's okay to ask for help with the unglamorous job of weeding the flower gardens. And yes, communities both temporary and permanent can be created when folks come together with a task, a desire to serve, an urge to reach beyond ourselves.

Garden Spring Flowers

What gets me through my days? Lots of things, including the love and suppport of friends and family, my trust in the universe that everything will be okay as my life winds down, and the delight I feel in my garden.

My spring garden has lots of perennials and perennial bulbs, which means I have to do nothing except weed and perhaps water a little. And with little energy to do gardening this spring, I have appreciated the enthusiasm of my garden. I love watching new flowers open, and breathe in the fragrance of the flowers.

My poppy is a vibrant red that brightens up the whole garden.


The fish are active in the water garden, eating and laying eggs (I think). The greenery is water celery, whose roots survive even our hard New England winters, and which grow quickly once the weather warms.


This looks a little messy, as I favor the "cottage garden" look that lets things grow where they planted themselves when they seed themselves. I do plant the perennials and they don't move around the garden, but some will seed themselves from year to year. In the foreground are the peonies, with fat buds not quite open yet. Farther back is a bearded iris, and my red poppy.


This is my tree peony, with its enormous white blossom, It opened a little earlier than the others, and was stunningly beautiful. I planted the tree peony about six years ago, and it bloomed for the first time last year. I guess they are fairly exotic and can be hard to grow.



A white "traditional" (herbaceous) peony, incredibly fragrant.

My pink "traditional" peony, also very fragrant.

I also have bearded iris, and siberian iris blooming in the yard, profusely, and other flowers coming along. By the end of June, most of the show is over, except for any annuals that get planted, and any summer blooming bulbs I get into the ground (and I do have some ready for a friend to plant). My raspberries are full of flowers and newly developing fruit which we should be able to enjoy in a few weeks.

Life bubbles along in its new rhythm. I was pleased to hear the hospice nurse say on Monday that she thinks my energy and overall state have been pretty stable over the month she has been seeing me. I still wish I had more energy, but I'm grateful to make it through days when I can do some productive things and feel a part of my family. I send love and gratitude to each of you who reach out to me.

Mourning my Losses

Patty and I just returned from a few days in P-town, the little trip without the kids that Patty mentioned in her post last week. We had a tiny little one bedroom unit on the harbor in Provincetown, able to watch the tides come in and the boats rock gently on their moorings. On Friday we had an early morning thunderstorm, and a one again in the late afternoon, which we could watch from the couch in our living room. It was sweet and relaxing and felt like being out in the weather without being out in the weather.

While we were there, we hung out in our room, reading, napping and relaxing. Patty did more, walking on the street and running errands for us. An expresso bar is right near the unit we were in, so Patty had lots of coffee to drink, and in the mornings she bought us cinnamon donuts at our favorite little shop on Commercial Street.

Because I'm experiencing shortness of breath, I knew I wouldn't be able to walk up and down Commercial St., one of our favorite things to do while there. We had arranged for hospice to get us a wheelchair, and Patty wheeled me down the street on Friday, so I could check out the shops and we could order a little lunch at our favorite burrito place. I couldn't eat much, but it was fun to share our lunch on the back deck, overlooking the harbor. I still don't have much appetite, or hunger, so when I eat, it tends to be just a small amount.

Riding in the wheelchair was okay, but I'd like to order some better shock absorbers! The street was not smooth, and so my ride was bumpy. Also, at first, Patty was pushing me so fast I began to feel motion sickness! Once she slowed down and avoided the potholes, the ride was much more pleasant!

Another day, we drove around P-town, checking things out, including two rental units we've arranged to spend a week in with the kids later this summer. They each look really special, and like they will be special places for our family for the week, but they raised my anxiety about my energy in 4-5 weeks and how much I'll be able to do or not do.

When we got home from our excursions, it was time for a nap. I've been sleeping 2-4 hours during the day, in addition to the 8 to 10 hours I sleep most nights.

I finished a few novels, read the newspaper each day, checked out some magazines, and generally spent a lot of time on the couch reading, and then watching TV at night.

I mention all of these details to say this is my life these days. Lots of naps, lots of reading, a little moving around, but not too fast or too much. Bringing my current state of low energy to a place I have loved and delighted in enjoying makes me aware of how much I've lost. I'm not the person I was; I don't have enough energy to fully enjoy being in a delightfully different location. I feel the cancer taking its toll on my body and my energy and delight in life. I am mourning all that I have lost.