What a weekend

We are still recovering.

What a weekend mostly great!  We had a bit of a hard time at the graduation.  Bennett and I both had a difficult time.  I struggled with how to support her and myself.  One of the parents came to me and said we were doing what we needed to do - which was crying and hanging on.  That was wonderful to hear and helped me just continue.

Aunt Ruth and Tanta Di were there steadfast and supportive.  Tanta got a video of the kid next to B hitting her which sent her off.  I cannot blame him since he ended up leaving to go to the er with low blood pressure.  This is just pre-school!

The trip to NYC was great.  Bennett loved seeing the babies and I felt like we did the right thing seeing her with them.  Dori was the co-pilot which was great she was wonderfully social after a glass of wine and was able to keep up with B after the party.  I think we jogged a mile or so after B in Manhattan.

B getting grad certificate

Next day was the big b-day bounce house in the park.  We did it!  Bennett was mostly great - having fun with her friends.  I loved all the people who came - they were wonderful!  Bennett had more presents than she could open in a day.

Aunties and Sisters made it happen- thank you!   

Monday Estelle came to hang out with us - she is such a great kid.  At one point in the day B and Estelle were walking through the house and B was telling the story of when Momo died.  Estelle just listened to B it was incredible to watch.

Dori and I went to the gym  and ran 3.5 miles.  Today I ran with Zeus 3 miles today.  We did not do much today -sadly said goodbye to dori and then cleaned.  Tanta Di shopped and we just relaxed.   

One Month

It has been one month.  I promised myself to post what Ruth's close friends said at her memorial.

Bob and Jim Kempster

I had the honor of offering reflections at the memorial service for our dear friend Ruth Van Erp yesterday. I first read the following reflections from Bob (who to our surprise had known Ruth longer than anyone else in the room other than her family) and then followed them with a poem I'd composed over the three days since we'd gotten the news of Ruth's death.

The day I first met Bob at NYU 23 years ago, he told me he was excited for me to meet his friend Ruth. He spoke of her like they had known each other forever, a year or two already. Turned out it had only been a week. But the first day they met they had spent seven hours together talking and had became instant friends.

Here are some of Bob's memories of Ruth:

She was always driven to make her art, even when no one else would be. She'd be the last one in the back of the studio, using the collar of her white T-shirt to rub the clay from her face. It didn't matter to her whether she would become a famous artist, she just needed to do her work, and continued to do so, for as long as she could.

My best early memories of Ruth were visiting the polish restaurants in the East Village for banana pancakes, where we would try to out-eat each other, while we discussed the bad artwork being made at the time: the wordy conceptualists that these two very intuitive, visual, sensual artists couldn't relate to. But then we'd ask for extra butter and syrup and all our problems would dissolve.

After the tearful day Ruth moved from Brooklyn to Massachusetts, our time together consisted mostly of phone calls, and she'd tell me of making jam, reading a book, working in the garden, playing with Bennett, making dinner for Pat, working on stained glass. I wouldn't realize until the end of the conversation that she'd done all of that in one day.

I watched her evolved from a youth with a lot of hidden secrets of pain, to an amazingly open person who was very giving and insightful.

I will always remember the many times Ruth and I walked arm-in-arm through the streets of New York City.

She was more like a sister than a friend.

She was my hero.

Not Ruth

Ruth was not a woman.

She was a mother goddess in Vulcan's work clothes,

a fashioner of flesh from clay,

the gardener and the garden all at once.

Ruth was not beautiful.

She was a majestic mountain range,

the vast blueness of a rolling ocean,

the entire sky at dawn.

Ruth was not a friend.

She was the seat of wisdom comfortably upholstered,

unconditional forgiveness smiling softly,

a warm embrace coming from six feet up.

Like with anyone larger than life,

it's sometimes easier

to say what was not

than to grasp what was

completely,

and attempted definitions

dissolve into poetry,

into silence,

bigger truth.

Our beautiful

woman,

friend Ruth,

mother,

wife,

sister,

artist,

garden,

ocean,

mountain,

sky,

wisdom...

love....

I want to say I'll find her in the landscape, the sea and the sky.

Buy a book at the Strand or eat a Polonia,

and recognize her in the book or the breakfast.

Or see her peering through her stain-glassed panes in our home,

or hear the lilt of her voice in a passage from her blog,

or catch a glimpse of her in her daughter's smile.

But I know the absence will be truer,

the silence

more honest

and vast enough to hold her being,

and to teach me how

to know her

when I need her most

when I feel her

most

not

here.

Julie Pokela

My good friend Ruth van Erp died last week, leaving behind her 4 year old daughter, Bennett, her wife Pat, and many grieving relatives and friends. This is the remembrance I read at her funeral.

Ruth van Erp was taken from this earth much too young. She had so many
gifts that the world could use. With her passing, how much more important it
is that we pay attention to what Ruth brought us.
For me, one of the biggest gifts from Ruth came the day I met her. My wife
Liz and I were at an event at Snow Farm and Ruth and Pat came up and
introduced themselves. It was in the spring of 2007, and Pat was very
pregnant. Ruth told us that they didn't have any relatives in the area and
they had heard that Liz and I loved kids. Ruth asked us if we would be
aunties to their baby. Without a second's hesitation, we said yes.
Then Ruth asked if we would like to take Bennett one day a week. At that
point we hesitated. Not because we had any concern about spending a day
each week with their baby--we knew we'd love that-- but because we didn't
know Ruth and Pat. Liz had taken welding classes from Pat at Snow Farm
and really liked her, but we knew that having their baby one day a week
meant committing to a relationship with Ruth and Pat, and we didn't know
them. But it was such a generous offer, we threw caution to the wind and
said yes.
Whenever I've thought about that day, I thought the gift was being able to be
Bennett's auntie. Everyone who knows me knows what a gift that is. But in
retrospect, another gift of that day was the example of Ruth's courage. The
courage it took for Liz and I to say yes was small compared to the courage it
took to ask us. Ruth didn't know what our parenting styles were--for all she
knew, we could have spent every Sunday filling Bennett with junk food and
teaching her to swear. But Ruth was committed to creating nearby family for
Bennett. And like families of birth, families of choice can be filled with all
kinds of characters. But aside from our individual idiosyncrasies, what a
child needs is a foundation of love, and Ruth created a world in which
Bennett gets unconditional love from lots of aunties.
Ruth's courage also showed with her biological family. Ruth had had longstanding
breakdowns with her biological family. Liz and I have taken
courses with Landmark Education, and when Ruth saw how we were
reconciling with our families, she wanted to explore that, too. Ruth took a
course and through it, chose to take responsibility for the breakdowns with
her family. It takes incredible courage to call members of your family and to
apologize for creating the distance between you. At the time Ruth made
those calls to her mother, sisters, and brother, no one knew how precious
those relationships would become in the very near future. How different
today would have been if Ruth hadn't made those calls. Janna, Joanne, and
Mary--you know how much Ruth needed you and your mother's words,
prayers, and love through her fight with cancer. Each of you provided
something precious to Ruth and helped her through her hardest days.
But Ruth's greatest courage was in her battle with cancer. I don't mean to
imply that Ruth wasn't afraid. You don't need courage to face situations you
have no fear of. Courage is what you display when you move on through
your fears. And Ruth spent the last year and a half doing that, and giving the
gift of sharing it with us through her blog. In reading Ruth's blog, I could see
how much of what I fear has to do with the future: after breaking my arm,
leg, and back in the past couple of years, am I going to keep breaking
bones? will I be able to keep my business afloat through this rough
economy? What will my dinner guests think of the food I'm preparing? When
I get caught up in worrying about the future, I think of Ruth's words: the
future is in God's hands, we need to live each precious day, present to what
that day brings. For Ruth, part of living each day was traveling: to England
and California, to New York City, on a final vacation to Saint Lucia. But
mainly, it was about being present to ordinary days--going to the
playground, to A to Z, getting ice cream, giving Bennett baths and reading
her books.
How difficult it is to live in the present--how much we take our short time on
this earth for granted. I hear myself and others saying: I can't wait to go
home tonight, I can't wait until this week is over, can't wait until I go on
vacation, I'm worried about next week, next year. In her blog, Ruth reminded
us that hours and days of our lives slip like sand through an hour glass, and
while we act like we have all the sand in the desert to waste and take for
granted, none of us knows how much time is allotted us--we need to take
stock of what we want to do with the short, precious time we have on this
earth, to feel happiness and grief, and sorrow and joy; to laugh and to cry;
and most of all, to love the precious people who are in our lives. To have the
courage to live in the present. To make each day count, as if it could be our
last. It could be.
I have been looking at Ruth's amazing art with new eyes--seeing it freshly,
appreciating it more, knowing no more will be created. And thinking about
her fascination with wings: how much of her art has wings, including the
wings she had tattooed on her back. As if at some level of her
unconsciousness, Ruth knew she would soon need those wings to carry her
from this earth.
And now that that has happened, look at the world Ruth's courage has
brought. A strong web of family of choice and family of birth, with Pat, the
love of Ruth's life at the center, pulled together to hold her precious Bennett,
to give her the base of love from which she can grow and explore the world,
and prepared to gently catch.

Sandy Diaz

All of us here knew Ruth from different parts of her life and each of you has your own special memories of how you knew and loved Ruth. I was probably Ruth’s closest ‘mom’ friend. I was sitting at Sargeant Street Park with my then-infant daughter when this big woman with a big smile and a little baby in a Snuggli approached me with a friendly hello. We discovered we had a mutual acquaintance and Ruth would soon join a weekly baby and toddler group that met over the course of two years.

Ruth and I were the same age—older moms in a universe of mostly younger ones—and perhaps because of that I think we shared a certain perspective, which is hard for me to define. Maybe it made us a little mellower, more accepting, less likely to be competitive. I know that it was easy just to be with Ruth.

 Over time, our little group disbanded, but Ruth and I continued our friendship, which was largely centered around being mothers. As Bennett and Avy grew, luckily for us, they became friends, too. BFF’s, as Ruth liked to say. Raising young children can be alternately exhilarating, inspiring, frustrating, and sometimes, downright tedious. Sharing this parenting journey with Ruth made it so much easier and even more important, fun. Ruth was generous on so many levels: She sometimes picked up dresses or little things for Avy when she was out shopping for Bennett, which she loved to do, and she seemed to revel in Avy’s emerging personality and development nearly as much as Bennett’s.

We spent many days together in what seemed like simple, mundane activities, but which now, in Ruth’s enormous absence, seem anything but. We met at the park and ate cookies or sandwiches while our daughters climbed on the play structure. We pretended to be monsters and chased them around the park. We went to Music Together classes and then out for pancakes, burritos, or noodles. We poked around consignment stores and went to Nick’s Nest for hot dogs and ice cream—with Ruth, ice cream was often involved— and took walks with the girls. We went snowshoeing a few times with Avy and Bennett strapped to our backs. We sat on the beach while our daughters splashed at the water’s edge and later waded with them when they learned how to swim, first at the beach and then at a local swimming pool. We picked berries and tomatoes together at the farm we belonged to, while Bennett and Avy raced barefoot between the rows of raspberry canes. We often sat in Ruth’s kitchen and chatted over tea— about our lives, local politics, schools, people we knew, our hopes for our children—while Bennett and Avy, dressed as Princesses, danced around and fought over Calico Critters or who had the biggest cookie or the prettiest cupcake. Ruth was always much better than I at gently defusing these little squabbles.

Anyone who has been in Ruth’s house knows that she had a rich life. She was an amazing artist and her house is filled to the brim with stained glass windows, pottery, prints, sculpture and other art that she created. She loved to cook, make homemade pickles and jams, read, garden, and knit. I am sure some of you, or your children, have hats or sweaters or socks knit by Ruth’s able hands. But I think her greatest creation and probably her biggest joy was the family, the home, and the life she created with Pat and Bennett, clearly the great loves of her life.

Ruth delighted in showing the world to Bennett and she strove to make sure she had good experiences in life, from travel to music classes to organic vegetables from a local farm to a great preschool and afternoons spent outdoors at the park, Canoe Club, or farm. Recently, she was excited about the possibility of sending Bennett to a circus arts program. In Ruth’s absence, I know that she would want all of us to continue to show Bennett that the world can be an amazing and beautiful place, despite the pain and suffering that it also contains. I know Ruth’s three sisters and her great friends, Aunties Ruth and Theo and Liz and Julie, and others, including myself, will take up where Ruth left off, helping Pat and Bennett to not just make their way in the world, but to live life the way Ruth did: fiercely and with love.

Ruth had such generosity of spirit. She helped me many times with struggles much, much  smaller than the colossal one she ultimately had to face. For that, I will be forever grateful. But mostly, I am just thankful that she was my friend. She showed me, again and again, that the best kind of life is a life shared with others. Thank you, Ruth, for all that you gave us. I love you, I miss you, and I will never forget you.

Me

Thank you for making Ruth's memorial worthy of Ruth.  All I can say is that I love Ruth more than anyone I have ever met.  She made me whole and broadened my world.

I will try to deal with and share some of my loss in a blog 1000 miles for the next year.  thanks Pat http://runaway1000miles.blogspot.com/

Ruth's service

Ruth's service will be held on February 25th at 12 noon in St. Paul's Episcopal Church, 485 Appleton St., Holyoke, MA. In lieu of flowers, memorial donations in Ruth's name may be made to The Cancer Connection, 41 Locust St., Northampton, MA 01060.

WTF?

So we've been in St. Lucia for two days.  For those two days, I have been in bed, in pain, confused, and sometimes hallucinating.  Bennett and Pat were total troopers on the way here [Pat interjects that Ruth was a total trooper on the way here, too.]  And the flights were easy.  The people were super helpful.  We got golf carts and wheel chairs.  It was like the seas of crowds parting when we need to get checked in or needed help of any kind.  It was a long, long day of travel.  We got up at 2 a.m. and arrived here at 6 p.m. (with an hour time difference).  The car ride from the airport was over 2 hours.  I haven't been outside yet, so I don't have much to tell you, but according to my sources, the beach, not too far away, is beautiful. We have our own little pool out our back door.  Bennett has been wearing her hello kitty swimming suit almost the entire time.  I did make it downstairs yesterday and am downstairs right now.  I had a shower today, which I desperately needed.  Here we are in the living room.

Have't Been Posting Much

That's true. I have been trying like cray to get the meds in order so I am spaced out or in pain. Today was pretty good, but I spent the day in bed getting over last night and yesterday. Cooky, the Hospice nurse came over today to told me that it might be a progression of the disease. Maybe the slow typing is too.

I feel pretty awful, but am still looking forward to our trip. I like to get text messages, comments and emails. Call, at this point are a little taxing.

I have missed my texts, but I am working really hard to make this balance work out.

Another day, Just Like Yesterday

Slept a lot, the pain was under control, but only when I was totally out of it. I have to say that all sleeping feels great, I am not joking.

I don'r really have that much else to yay. It was nice to see Aunt Ruth. twice, and it was lucy to talk to Jessica - for about four minutes before I feel asleep on her. kkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk

Like I just did again. I good night.

Hey Dude

I am having trouble getting the dosage just right, so I have been doing a lot being in pain one minute and dozing off the next. I spent most of my time in bed. It was sort of a sad but perfect day. I wasn't sad at all, I was just drugged and not really understanding what I should do. I think this will be the long haul of trying to get to comfort without knocking myself out.

Pat took B to the Winter Festival with Avy, Emma, Sandy, Brad. Pat said it was fun and I am super glad they all went. I slept. Which I am going to do right now. I got to Skype with my sister Janna and her daughter, Rachel, son-in-law Alexis and grandson, Eliott. That was pretty fun, I have say. I really like to skype. My Skype name is rvanerp46. Please feel free.

More tomorrow.

Here I am, Not to Worry

I haven't posted the last two night, and have learned for some, that is too long. I can't remember what happened Wednesday night, but last night it was just impossible to get B to go to sleep. We were all exhausted and it was a bad combination. Finally  she went to bed. Pat finally had some time to talk and, rocks or not, it''s hard. We have a lot going on, to say the least. I love her so much, and she works so hard, and is the most talented person I know. She has giving me the time of my life.

Bennett is doing great- ish. She asks me a lot of questions about me going to Heaven and what I can take with me. It's a relief every time she asks a question. I just hope she keeps asking.

Pat picked up the Chinese Herbs for me the day before yesterday. Then spent the entire evening boiling, mixing, reboiling, over huge pots. The first night, I acted like a baby, and made a big fuss about having to take them. Then I woke the next morning with no evidence of a hot flash. Same for last night. Now I don't make a peep.

So I am slowing down and feel it. I am trying not to let it demoralize me, but it's hard. That's all I can say.

Up and Way Down

I had such a crappy day. I don't even really know how to describe it. It started with night full of hot flashes, at least five shirt-soaking flashes. That made it very hard to wake up and take B to school. P& I did it together for a couple of reasons, I am not sure I should drive on an opiate, and we had an appointment with the herbal healer. That part of my day was great. It was nice to have to Pat there, to give her opinion and remind me of things. I have come to realization that I tend to automatically say that I am fine instead of saying the list of things that Pat remembers. I have to say her memory is much better these days.

I spent the rest of the day having hot flashes during my nap, then I ate a grapefruit with Bennett and just sat and held her hand for a while. It was lovely. Then I had to get to bed again. It feels like the only place I want to be. I am really crossing my fingers that Sharon can help me with the hot flashes. I think they are why I am so tired all the time.

I have reflexology tomorrow - and so does Pat. It's going to be good for both of us. I hope that tomorrow is better- actually what I want is for tonight to be flash-free.

Dail-A-Dude is Back

So today I had another meeting with Cooky, my hospice nurse. She is great and makes me feel like she is totally on my side and will take care of me no matter what. How nice is that? We were talking about pain meds and my meds journal and were brain storming what to do. She had a couple of good ideas, long acting this, a patch of that, etc. Then I said, let me look in my medicine cabinet and see if I have anything else - since we decided the Vicodin and Oxycodone were not cutting it. She told me and Pat that we had done a good job cobbling together pain management with just what we had in the cabinet and no coach. Anyway, I brought out good ole' Dilaudid. That's the drug that they gave me too much of when I was in Holyoke hospital and I had to call Bob to talk me down. Anyway, Cooky was happy to see that Dial-a-Dude and that is what I am on. I took the first pill and went to bed. Twenty minutes later I was ravenous, and had to get up to eat. Then I just wanted to hang out. I felt like my old self. It was wonderful. Cooky worked out a plan with Dr B and that is what I will be on for at least the next 36 hours. He wants to know it's working before committing.

So it was a pretty good day after all.

In case we didn't already know that Dr E is quite possibly the lease competent member of the medical profession, she called again today. She called to tell me the physical therapy associates she referred me to, don't actually do pain management, so she referred me to a sports medicine practice. That ought to help. And never mind that all this time she's been screwing around, I've been in pain. What the F*?

Tomorrow I am taking B to school, I have an appointment with an herbalist. I am not convinced about going, but Pat is coming and I think it will be interesting to see what she wants to know. At this moment, I would rather just continue to see Nancy, but I will go with an open mind. And I will let you know about it. Now that we seem to be on the right track in terms of controlling pain, I am sure I will have a more varied subject matter. I want it too.

Pretty Crappy

Today I think was my day to I realize just how bizarre and unlikely what is happening to my life truly is.  In the past three weeks everything has changed. I feel terrible physically and just realized that it's not temporary. This is it, this is what I chose when I didn't want any more treatment. It's pretty crappy and it makes me mad. Really furious. I have been swinging between exhausted and furious today. I spent most of the afternoon in bed because I knew I would not be able to be pleasant. I had a grumpy word for everything. I took myself out - I didn't want to grump all over Pat and Bennett.

So, needless to say I didn't get much done. I did get to talk to Ruth, Mary and my friend I have known the longest, Theresa. It was fun, even though I pooped out at the end. Bennett had fun with Aunties Julie and Liz and that is pretty much it.

I think I should log off - I am still pretty grumpy.

Ugh!

I have not had much luck today handling my pain. I messed up taking something a little off schedule and that was sort of that. Pat helped me sort it out late in the afternoon, and I have been feeling better. I can now say with confidence that I need pain meds all the time. What a bummer. It's like I went from needing nothing to be cautioned about taking too much Vicodin.

I am not going to post much, but did want to mention that I am beginning to believe that Bennett is one of the luckiest kids I have ever met (aside from the dying and all that). She has so many people who love her and think about her so much. Just this week she got she got three packages in the mail - a box with books from Jessica (that I have read to her no less than 10 times), a Hello Kitty bikini for the trip to St lucia from Aunt Joanne and Cousins Libby and Carly, and yesterday she got the photo album. It's really for B, even though yesterday I made it seem like it was for me.

Aunt Ruth came over for breakfast and a playdate. I saw her for about 3 minutes, Bennett got the rest of the time. Then Avy, Brad and Sandy. Everyone went to the park - I took a nap. Then it was playing. Bennett had a hard time sharing and that was the end of the playing. She was over tired and hungry. She has a very hard getting enough food in her when she is excited.

That's about it. I will post more tomorrow. I have to leave you now to dive into the big bowl of delicious chicken soup made by my personal chef, Pat. She is getting to be a very good cook. Lucky me!

Happy Inside

My sister Janna and my mother sent Bennett an absolutely wonderful photo album of pictures of me and my family (or origin) since birth. I just looked at it with Bennett and she knew who I was until about 12 - then it was the 80s. Eeeek. Did I really do that to my hair on purpose? What about all those earrings? And the make up? I hardly recognized myself. There is one picture of me and my sister Mary - and Bennett asked what Aunt Mary was doing. My answer - hitting me. She also looked at a picture of my sister Mary when she was about 10 and wore little round metal glasses and asked me why I was standing next to Harry Potter.  My heart is 5 times larger than it was before we got this photo album. I love my family so much. They are all so amazing and loving and I am so lucky.

Today I met with Hospice for the first time today. It was great. My assignment this week is to keep a pain journal so they can decide what the best meds will be for me. I am happy about that. I feel like they totally have my back, and that feels great.

I got to talk to poor Jessica and her poor screaming babies today. I hope they have a better night tonight. I can't wait until we see them all again.

Tomorrow it's Aunt Ruth in the morning, Avy in the afternoon. Fun all day. I already reserved a sleep in for the morning - it's going to be good.

Olivia + Polly Pocket = True Love 4ever

Olivia and Polly Pocket got married at our house today. Bennett was very excited and it was a big event - attended by many dolls and toys. Only about 15 minutes after they married, they had a little bunny critter baby. Olivia and PP were overheard saying they wanted daughters just like Bennett and Avy.

I don't have much time to post, but I will tell you all about calling Hospice today. They were wonderful and we will meet with them tomorrow.  It sounds like they will be sending a nurse to check in on me every week (once the insurance etc is worked out) and that they have an array of pain meds they can use to help me feel better. I am very relieved to get hooked in with these guys, I think it's going to make a big difference - I have been feeling a little abandoned lately - and confused.

I gave my stupid primary care one more chance. I gave her a chance to recommend a pain management specialist. So she referred me to a place that does physical therapy and other things to help people heal. What a dope. That's all I can say. Thank goodness Hospice can talk to Dr B to get things going - they (Hospice) said that it took one call to get all the info and records they need and were really impressed with how nice he was. Hmmmm.

I had an epiphany about pain meds today. I have been trying so hard to stick with what's on the bottle - one pill every four hours. I decided I am just going to take what I want, when I want. It's not going to be long until I am on a real pain regimen, and even if it does long term damage, I am not going to worry about that. I am much happier when the pain is under control.

That's about it. I had reflexology today, and Maryann gave me the deluxe treatment - she did my hands, feet and neck. It was divine. We should all be so lucky as to have something as wonderful as reflexology and/or acupuncture every week.

More tomorrow. Love to all.

Better Day, Yay!

This morning was little rough, but things got better as the day progressed and now I feel positively happy with not having that searing pain I had yesterday and this morning. I think it is related to my kidney stone - that mysterious pain that I get every once awhile that makes me really have to moan and groan out loud.

I had to call my stupid primary care physician today. I called to get a referral for a pain management specialist. I know Dr B is my doctor, but I need someone local who I can feel like is on my side and only about the pain (and not the cancer, etc). So she has her assistant call me and ask me if I was calling to see her, because she hasn't seen me in so long she really doesn't know the details of my case anymore. I told this assistant that I was sure that Dr E. was keeping up with the reports my oncologist has been sending regularly, and that if she needed to refresh herself, she could reread them.  And that I wanted an appointment with a specialist, not her. The assistant was so sure that I would want to see Dr E before seeing the specialist, and I would have if that was the price to get to the specialist, but I don't think I will have to see her. I am not sure I would be able to be gracious with her anyway.

I spent most of the morning lying on the couch, moping. I was in pain and that makes me really grumpy. I dozed, but didn't knit like a thought I might. Maybe I did knit, because looking at my project pile I see that Matilda's hat is done and Stella's is started. Knitting in an altered state, I guess.

I had a long and luxurious lunch with Ruth. We went to the bookstore afterwards, and just hung out. It was so much fun, I just didn't want the hanging out to stop. I think this is when the big pain started to subside. Anyway, then I went to pick up a very grumpy Bennett who had to have her hair washed at school because she and her friend Estelle decided to rub frosting in their hair. She thought it was hilarious and got grumpy when I did not think it was funny. Sometimes I've just to be the hard-ass.

Today was Pat's first day teaching the new semester at Hamp. Bennett and I had a very nice evening together and now I am going to do a little knitting and TV watching. I did try the Oxycodone last night. That stuff is very strong and makes me super loopy. I think I will only take it at night until I have other directions from my new pain person. Let's all pray that I get a good one, quick.

Beastly Pain

So the pain is here and I am trying everything I know to try to get it to go away. I have taken all the meds I can, done deep breathing, etc. And it's still here. It makes me realize that tomorrow I have to step it up to Oxycodone. I don't think I have a choice. The main tumor in my abdomen is getting so big that it feels like it's filling up my gut and pushing things around in ways that does not feel good.

Ahhhh, it's totally freaking me out. When I look down at my belly, I can see its profile from above. That is just not right. It might be freaking out a little bit because I found out that a friend of a friend who was diagnosed with ovarian cancer this summer, died. It it so weird to have people diagnosed and died within the time frame that I have been diagnosed and am still alive. I feel grateful and guilty at the same time.

Pat is washing the dishes - the dishwasher is on the fritz, Aunt Liz is over giving B a bath, Zeus is home after a 6 week vacation with our friend Marcia (they were on the Cape for most of it), and I am posting. My schedule is free tomorrow. I am going to spend it with Top Chef, knitting and snacks. That sounds like a slice of heaven to me.

I had this idea that maybe some of you had some questions you might like me to address. I can answer them in the blog (or privately, if you prefer). So email me, comment me or whatever to ask your question. Do no be shy and I will tell you the truth as I know it.

Post 445

Today one of the kids in Bennett's school vomited all over the teacher and into a bucket. We have had a lot of throwing up in the bucket scenarios during Bennett's play tonight. At least it wasn't diarrhea.

All is as well as can be expected. I kept ahead of the pain much better today and that was really good. I knitted half of Matilda's hat, took B to and from school, gave B a bath and even took her to Walgreens (which she thinks is a big treat). Soon I will put her to bed and curl up with Pat to watch the latest episode of Downton Abbey.

Tomorrow I have my eye appointment and accupuncture. Yay for both.

Dana Farber called today and offered me a spot in a phase one trial. They are trying the maximum dose of some drug that I've never heard of. I just felt so hopeless when I was talking to Dr Mc. I told her I didn't want to do it because I know it would make me sick and I also know what phase one trials very very very rarely, if ever, extend life span. Don't start sending your stories about the miracle that happened to your Uncle's third cousin. I said no, and she confirmed that if I said no I could not call tomorrow with my mind changed. It's not going to change anyway. I do not, repeat, do not want to be barfing and be in pain at the same time. I just want the rest of my life to be as it is supposed to (well, one could argue that it was supposed to last 40 or so more years, but we won't get into that...). So that's that. And I feel good about my desicion. A little scared, but really good.

That's about all I have to report. I am taking reservations for anyone who wants to come visit. It would be good to see you.

Post Slumber Party Blues

If Bennett had her way, we would all live in pods around her own living pod. Always available. Who would be in those pods? Lots of Aunties, Avy, some other kids from school, lots of Uncles and of course there would be a pool.

This is a long way for me to say that B had a most spectacular time at Aunt R&T's house for a slumber party. She was mellow when she came home, she was super sad to see them go, but eased back into life pretty easily. We played and hung out most of the night and it was just great to see her.

Pat and I slept about a million hours. We went to bed around 8 - I didn't get out of bed until 10, I think P got out around 9. We were slugs, but it was so nice just to wake up with no one yelling about princesses or Hello Kitty. Not that I mind, it was just a nice break, you know what I mean.

I had a nice day. I finished sorting Bennett's books - I have three piles. One for Goodwill, one for school and one for Spence (B's pal). The one for Spence in all of B's dinosaur books. She helped me do some sorting yesterday and decided they all needed to go to Spence. I thought that was pretty nice. 

I worked on a hat for Matilda, talked to Jessica, did a  little of this and that. That's pretty much it. Tomorrow is another day, thank God. And I will tell you about it. I need some strong prayers and thoughts coming my way to control the pain. It's getting worse - or I am getting used to the pain meds. It just sucks and is so distracting. I hate it. 

Pain and Slumber Parties

Yeah, it's been a painful day. I have been trying to keep ahead of it with the Vicodin, but it's hard. It doesn't quit cover the four hours that it's supposed to. Then I get grumpy and Pat just tells me to take it, and then I worry that I am doing some harm to my liver. You get the picture. It pretty much sucks, but it's what needs to be figured out and I will do that.

Bennett is at a slumber party with Aunt Ruth and Aunt Theo. She had a big day already - hanging with me in the morning (mostly watching Pat and Brad work on the new loft), sledding with Pat at Avy's house and then off to R&T's. I hope she is okay and having an easy time going to sleep and all that.

It snowed off and on most of the day. We didn't get that much snow, probably 3 inches. It looks nice and I am glad to have it. I love winter days, cozy and lovely to watch.

I took a nap while P&B were sledding. That's about it. I think the Vicodin keeps the bad thoughts away. I have been sleeping pretty well (except the hot flashes), and have not really be dwelling on death. I know it's going to happen, but it feels far away at this point. We just watched one of the Matrix movies, and their portrayal of death is so annoying. It's that last quiet breath and then eyes shut. I know from reading that it is not as pretty as all that. I suppose it could be that peaceful, and maybe I am just annoyed to be reminded of death. I don't know.

It's 7:15 pm and and I am waiting until 8 to go to sleep. I want to go right now, but somehow it seems untoward to go to bed at 7 on the one Saturday in a long time that my daughter is not here. I should be whooping it up, right?

And Another

Today was a good day. I woke up so tired that I asked Pat if I could sleep in. She let me. I was only interrupted a few times by Bennett who wanted to know which pair of pants, which pair of socks, which pair of undies, etc had more pink in it and would be worn by a princess or Hello Kitty. Luckily the questions were easy.

I finally got up, showered, went with Pat to get our car out of the shop. I don't want to talk about it. I will just say that I believe that Steve Lewis Subaru are a bunch of jackasses. Enough said. I went to Trader Joe's, went with Pat to Bennett's class to put together a 3D puzzle of the Statue of Liberty. It was a blast, though I was pretty pooped by then. We ate, I put B to bed and now I am posting.

We are supposed to get 3-6 inches of snow tonight. I hope we get it all. I need an act of nature that feels big and makes me stay home. Bennett is having a sleepover with Aunt Ruth and Aunt Theo tomorrow night. She is totally excited, and she admitted, a little bit scared. I think she will do great. She is such a great traveller that I think she will do fine.

We are going to go back to NY for Matilda and Stella's baptism. That's good, I want to see everyone again, and Pat has volunteered to come with me. Bennett would not stand for us to visit those babies without her, so she will come to. It should be fun and lovely. I can't wait to see those babies in their fancy dresses. Oh man, what do I have to wear? I hope the church doesn't mind jeans, I don't fit into anything else. And I am not going to buy myself new clothes. That just seems wasteful at this point.

That's about it. More tomorrow. Let it snow!