feeling bad in a good hotel..with my mommy.

Mom and I headed out of Schenectady around 3p. I made myself as comfortable as possible in the car and tried to relax. The uncomfortable feeling in my skin and fatigue was really starting to overwhelm me. By the time we made it to the first service area on the thruway mom suggested we go to a friends hotel near by. I went to the bathroom, and mom got on the phone and set us up with some accommodations.

My thought...yay sleep for a few hours, I'll feel better in the morning. Little did I know this 'hotel' was a place she'd been to with my dad and it was one of her favorites and she was excited to share it with me..and I'd be there for a while.

We drove through Lenox and up this long beautiful private road to a castle built in the 1890's. Ann, the owner greeted us and I was immediately guided up a grand staircase,  to a room where if I had the energy I would have pretended to be a character from a Jane Austen novel. (In my mind I was already contemplating a trist with Mr. Darcy on the lawn.) The halls of Blantyre are lined with books, dolls, antiques. Each room is unique with painted moldings, toile wall paper, floral everything, working fireplace and the pouffiest beds I've ever seen.

I dropped my stuff plopped on the bed... and thought about Jane Austen and writing in the 1800's and how the ink must have been on everyone because quill pens are so messy.

My second thought was do they have wireless? I had work to do and wanted to lie in bed for the next few hours and do it. I just couldn't wait to send an email thanking everyone at the conference for everything..and was excited to send out a feedback survey.

No wireless.. just a tiny antique desk in the corner with a slow connection. My body was incapable of sitting up at the computer. I laid down again and thought about how much I loved the costumes in Pride & Prejudice, Becoming Jane, Emma..I could handle wearing an empire waist dress but corsets would be the death of me. Bonnets would be handy considering the current baldness. I zoned out for a bit..

We were invited to dinner.. it was the last thing on the planet I had in mind. But, the glimmer in mom's eye made it clear I was to once again rally myself and put on some decent clothes for the next meal.

We walked the hallway and down the grand stairs to the Music Room where Champagne and Canape's (duck confit, halibut, potato croquettes) were served. The pianist played while we sat on a comfy couch in front of a fire place.  Mom and I chatted and perused the dinner menu. We ordered our meal..and enjoyed the calm civilized experience of pre dinner conversation. After a bit we were escorted to our table in one of the dining rooms. We passed couples dining in private rooms... each room/table more lovely than the next. Each with it's own table setting with china and matching flower arrangement.

We had our dinner in the main dining room. There was one other couple. Which means there was only one other table in the room, but the room was big enough for 5 or 6 tables. They set only the number of tables they need. It's a lovely touch I had never experienced before.

Mom drank her wine, I still nursed my one glass of champagne. For our first course we shared two dishes; poached salmon and lobster.  I don't remember what exactly was going on there ... each were wonderfully delicious no matter what the reductions, sauces, dressings were that delicately draped over the fish. For our main course we had the Chateaubriand for two. Cooked to perfection and served with a potato rosti and sides of spinach, mushrooms, carrots each in separate dishes...served by the staff. Then dessert.
It was such a perfectly cooked, perfectly served, perfectly elegant meal I couldn't be more thankful for the experience. By 9:30p I was beyond tired and had to go to bed.

Which brings us to where I then stayed for the next 24 hours. I was a mess by the time I got to the room. I had chills, was hot, overly tired and uncomfortable in my skin. I fell a sleep as usual with no problem but awoke at 2am with horrible stomach pains and feeling like my body was attacking itself again. I couldn't sleep.. I was uncomfortable and I didn't know what to do with myself. The bathroom was fantastic.. so I took a hot bath and wigged out for a while trying to relax and remind myself that I still own my insides. Sounds insane..but it's like the chemicals have taken ownership of my insides and I'm just this outer shell housing a mass of mush rotting inside. Mmmm sounds good. Go Chemo!
In the morning I felt like I usually do...not completely together but if I move slowly I'll get into gear.

I ordered room service, got online and thought it was the beginning of a great day. The sun was shining, we'll walk the grounds, drive home, enjoy the ferry and I'll make it to the office by late afternoon.

I didn't leave the bed for the rest of the day. The curtains were closed.  My next goal was to rally by 1:00p and we'll be on our way..but I couldn't lift my head. The fatigue was unshakable. My heart wouldn't stop racing and I was still feeling uncomfortable and attacked from within. Mom requested a later check out. I was thankful for a few extra hours and I stayed in the room and didn't move a muscle. At 3pm I was increasingly more miserable and still couldn't move.

By 4pm I was overcome with acid in my stomach and my mouth was white. I was out of prilosec. One of the fabulous contribution Prednisone makes to your body is that it eats away your stomach lining.  I was out of the miracle little pills and after eating at the conference and then this great dinner I think my stomach was pissed. It was as if someone mixed sour milk, battery acid and lemon then poured it down my throat. Mom nervously called the Oncology nurse and got a new prescription ...she ran to the drug store and got me some meds. The nurse thinks I have another lovely side effect called Thrush. It's all just disgusting and uncomfortable. I took my pills and another bath and was able to sleep for a while.

The last thing mom wanted to do was ask if we could stay another night.. knowing Ann would be too gracious, but I was immobile. Ann the owner of Blantyre not only offered us another night, but sent me up a bowl of chicken soup. At 8p I managed a half hour or so sitting in a chair eating soup and bread and then went back to bed.

Friday morning I felt a bit better.. if I were home I would have stayed in bed but I got myself up and dressed and we made it to the noon ferry. I shut my eyes, covered myself with a blanket and tried to rest in the car. The sun was shining and mom was commenting on the beautiful Berkshire foliage changing as we drove. I missed most of it. By the time I got home all I wanted was my bed again. This nasty taste in my mouth, sour stomach, fatigue and the fact that my hands hurt, my feet hurt, my knees hurt...is all starting to annoy me quite a bit.

I'm perpetually uncomfortable in my skin. It's now Saturday morning and I've been in bed since I got home yesterday at 2:30p. I slept the first full night in weeks...from about 9p to 5:30a.  I feel better but I think I could lie here for the next two days and not think twice about it. My brain is functioning today though.. I've written the blog and look forward to getting some work done. I hope my "9th day" fatigue just came early and I'm heading for a normal week ahead.

My friend Deborah is making her way out here today..and as much as I want to go to the Harvest Festival I think her and I are going to sit in my bed and catch up on some reality tv. I heard big poppa is back in the picture...ryan and jeff are breaking up.

"Nobody minds having what is too good for them."
- Jane Austen, Mansfield Park

i went.

We had reservations on the 10:20am Orient Ferry, then a 2 hour drive up to Schenectady. I spoke to Judy (my boss) at 8am and said I didn't think I could make it. She said I'll call you in a half hour. She knows it would have killed me to miss everything and not be there to obsess over the details of the Arts Summit.
At 8:15a I got out of bed. By 9:00a Judy and Angela were at my door and helped me gather my stuff into the car. I thought I'd change my mind... I could barely lift my head.

Needless to say.. I didnt change my mind and now I can say first hand NYS ARTS Summit 2009 was a success! I'm very glad I went, it was great to see everyone. The event went well.. and I held my head up like a trooper. Inside I wanted to crumble like a house of cards but with the help of make-up and determination no one had a clue how miserable I truly felt.

Mid day Tues. I felt like my body was attacking itself again. I left the conference and curled up in my hotel room for a few hours. I was thankful for my mommy who drove up to Schenectady just in case of an emergency. It was very comforting to know she was there.

There were a few phone calls while I was in the room, catering, the band, sound equipment. Enough this n' that to make me realize there was no way I could miss the dinner and show. So I rallied myself. Once I was up I was ok, and felt pretty good for a while...but left the dinner early and immediately went to bed.

Wednesday was uncomfortable but I was up and functioning. Thankfully, I don't think anyone knew just how much I wanted to be in bed. I left the conference a bit early to drive home with mom... all I wanted was to be a sleep. The fatigue was creeping over me like a big wet blanket.

I'm so glad I went to the conference. Lesson learned no matter what...get up and go. 

should i stay or should i go...

my insides feel funny. it's silly, but it's the only way to describe it. I just feel weird. like my body is attacking it'self from the inside out. I slept for a while tonight 8:30p - 3a, not bad. Now i'm up obsessing about whether or not to go on this work trip. I still need to pack for the 3 days in Schenectady.....be ready by 9a. for the ferry ride and 3 hour drive.

I've worked for months organizing/coordinating this conference for NYS ARTS . Over 230 attendees, 45 speakers, entertainment, catered meals, dinners, board meetings etc... A big 2 day event and I'm proud of the job I've done to make it all happen. Especially over the past few months while feeling like one hand tied behind my back and half a brain.

This last hit of chemo has been the worst, still feeling nauseous and ill. Haven't hit the just uncomfortable woozy feeling. My body needs to be turned inside out and hosed down, then put back together again.

what to do... what to do.

Yesterday sucked.

I was achey, miserable, in pain, fatigued and nauseous. Couldn't sleep but couldn't get out of bed. My mom fetched me homemade chicken soup from my Aunt Marilyn. The absolute best chicken soup in the world. Alison stayed by my side all day.

Carin and Nicky made a surprise visit..with an adorable basket of goodies. I had told people not to come over, but I have to remember that it's always nice to see people. It was great to have the visitors for a few minutes.

The day was rough and miserable, the worst yet. Ali spent the night sitting next me and the toilet or with a bucket by the bed.

This morning I feel a million times better..back to feeling like a fatigued 80yr old. Aches and pains but my brain is functioning better and I'm more alert. Even got up to eat breakfast.

Sharon and Sage are on the jitney coming to visit for the day. The sun is shining and I look forward to the prednisone lull wearing off and feeling somewhat more human as the day progresses. Joel is on a flight from LA and should be here tonight. I look forward to having enough energy to go to the Maritime Festival in Greenport tomorrow.
We'll see.

deep breath and hold it.

Chemo day began as usual with me waking up late... thankfully Alison called me at 5:45am to see if I was up. I wasn't. I answered the phone "What..did I miss the bus??" she calmly said "no ..get up". I did. And I was on time for the 6:30am Jitney from Mattituck, with time to spare to get us bagels. Ali was already on the bus.. she got on at Southold.

We rode the rolling ice box for 2 hours and arrived at Sloan on time. By 10ish I saw the Oncologist who after hearing my weeks symptoms of intense night sweats, and and pain in my ribs. Thought it might be best for me to get an ultrasound of my Gallbladder and Kidney's. Little did I know that bagel would be the disruption of the entire day's schedule. The next Ultrasound appointment I could get wasn't until 3:30 and it was on 53rd Street. So Chemo was canceled.

My friend Keith had come by to give support, he has known my family and I for forever and was not phased by having to endure listening to Alison, my mother and I discussing the logistics of the day.. everything was now topsy turvey.

Do I go home tonight, to come back to Chemo tomorrow at 8:20am? Who's coming with me to Chemo tomorrow? Saturday is a holiday, who will be with me? Do we take a cab to get the ultrasound, who goes in the cab?

Mom and I decided to stay the night at Ali's in Brooklyn. And we all got in the same cab.. Mom and I went to get the Ultrasound on 53rd Street... Ali went to work for a bit. Keith got the hell away from all of us and went back to work.

In the end I got the ultrasound sooner, after a half hour with goop on my belly and the nurse asking me  "deep breath and hold it" it turned out to be nothing. The doctor thankfully didn't see any new tumors and I was good to go. So, I called the Oncologists office and begged to get back on the Chemo schedule for today. Mom and I hopped back in a cab to Sloan on 67th Street.. and by 2p I was back on the chemo schedule. After some lunch in the cafeteria I was in a chemo room by 4:30pm.

All went well... I had no adverse reactions and the drip was finished in record time 3 1/2 hrs.
We were in Mattituck by 10pm and I was a sleep by 10:01.