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.

lymphoma awareness day

A while a go I found out about a Lymphoma Awareness Day.. bookmarked it.. then forgot all about it. As it happens it was yesterday. Typical me...day late, dollar short. But in light of awareness day, I thought it might be helpful to make you blog readers, friends and family aware of what Non Hodgkins Lymphoma is and what type I have.

To be honest, if it were me reading this.. and I was suggested to be aware of some type of cancer. I'd click away from the page so fast you'd feel a breeze. But.. if you want to read on.. here are a few links and my short hand way of explaining stuff.

I have Follicular Non Hodgkins Lymphoma (NHL) Stage 4 Grade 3b(ish - my Oncologist can't decide if it's actually 3a or 3b but leans toward 3b)

What is lymphoma?

Lymphoma is a cancer that affects a type of white blood cells called lymphocytes – immune cells that normally protect you from illness. About 85% of lymphomas are of b-cell origin, and 15% of t-cell origin.  (There are something like 30 different types of Lymphoma...I have Follicular)

Lymphomas result when damage to DNA occurs to a type of white blood cell (a lymphocyte) that results in the abnormal production of proteins that prevents the cells from dying when they should, or causes sustained rapid cell division. 

These malignant cells then may accumulate to form tumors that may enlarge the lymph nodes or spread to other areas of the lymphatic system, such as the spleen or bone marrow. 

Lymphoma cells can also migrate to, or first appear, outside the lymphatic system.  Lymphoma that presents outside the lymphatic system is called extranodal disease.  

(As of now, I do not present in any major organs - but it does present outside the lymphatic system ...which is why it's Stage 4)

What is Follicular non-Hodgkin's Lymphoma?
"Follicular" describes the cell type. B-cells arise from the bone marrow and mature or differentiate into many cell types that migrate to different areas of the body. Normal follicular b-cells reside in the germinal center of lymph nodes. The majority of follicular lymphoma have an indolent (slow growing) clinical course. (me...being the lucky little devil have a more aggressive type..which is why it's Grade 3b)

General Information

In the developed world, lymphoma may not be an extremely common cancer, but is definitely one of the most important. It is one of the commonest causes of cancer related mortality in developed countries. Non-Hodgkin's lymphoma (NHL) is one of the few cancers that are showing an upward trend in incidence all over the world. Treatment of lymphomas has undergone a sea of change in the last few decades. Biological treatments with monoclonal antibodies have had the greatest impact in lymphoma than on any other disease. More and more research in lymphoma is spurring newer and newer treatment options.

• In the next decade, Lymphoma might be what sees the most progress with new and innovative treatments. (donate to LLS)
  

• The incidence of NHL increases with age. About 2.4 cases per 100,000 persons occur in 20- to 24-year old individuals. By age 60 to 64, the rates increase more than 19 times to nearly 46.5 cases per 100,000 persons. From ages 80 to 84 the rate increases more than 49-fold to 118.1 cases per 100,000 persons.

• An estimated 20,790 persons will die of lymphoma in the United States in 2009 (19,500 from NHL; 1,290 from Hodgkin lymphoma).

• NHL is the ninth most common cause of cancer death in males and the sixth in females in the United States. 

The Leukemia & Lymphoma Society has been very helpful to me personally, and I believe in them and what they do as an organization.

If you want to help out with the Leukemia & Lymphoma Society in any way.. you can walk with me on October 8 in Riverhead or make a donation of any amount to LLS.

i feel good

that's all.
i just wanted to let everyone know. yesterday and today.
i feel really freakin' good.

I can no other answer make, but, thanks, and thanks. ~William Shakespeare

i've been obsessing over the correct way to show my gratitude for all the thoughtful gestures from everyone. I'm in the process of designing some thank you cards but of course that's taking a while...and do I send a thank you card for a card? Do I send a card to someone for stopping by to give me a hug? I want to because I appreciate the effort, so much.
I thought about posting a list of all the kindness, but that seemed weird..and long. I had the idea of sending out north fork post cards but they're ugly ...a mass email..no. So, in the meantime.

THANK YOU!
to everyone who.. thinks of me, reads my blog, comments, comes to chemo, stops by, sends me emails, letters, cards, notes, gifts, food, calls, comes over, texts..just to see how I'm doing or to ask if I want some dinner, donates to LLS, stops me in the street to hug me or just give that look of "i got your back sister". This all would suck much more if it weren't for your generosity, thoughtfulness and kindness.

I'm fine, doing fine and will be fine because of sweet people like you.
I'm a lucky girl and I feel loved,
-Jen

How beautiful a day can be
When kindness touches it!
~George Elliston

**I just have to add..that I wrote this post this morning before work ..got into the office and Angela very sweetly brought me my mail. In the bundle were; Two cards, 1 knit hat, a homemade jar of apple sauce, a box full of earings and a bill for a speeding ticket that I'll prolly get arrested for..but that's not the point. The point is.... I just can never truly express how lovely and sweet it is to know that people are rooting for me and know that this whole situation sucks. 

Thank you.. Thank you .. Thank you!!!!!!!!

xoxoxox

and on the 9th day...

It's been an uncomfortable week. The prednisone, the constipation the complete lack of momentum.. daily/hourly unpredictable. I've gone to work everyday, had friends over, family visiting, met with clients.. all in all normal but with this unpredictable fatigue and discomfort rearing it's ugly head at different times throughout the days.

Then to end the week, right on schedule ... the 10 day post chemo.. severe fatigue.
For me it actually hits at 9 days .. Saturday. I spent yesterday in bed. Barely moving, barely watching tv, just lying there with cramps and misery feeling like death warmed over. I did not facebook, text or open the laptop. Any glimmer of sunshine poking through the curtain I sealed up. At least until about 5pm when Alison came over and opened them all up. The smell and stuffiness of the room had to be brutal. As I mentioned, I had cramps so the farting was heinous and painful. The stench ..like ...like.. i don't even know what...but I thought maybe it was going to strip the wall paper. Ali tried to rub my back, but had to step away and literally go sit by a window for fresh air.

If it hadn't been painful, it would have been funny. We did laugh. But soon the waves hit. First a wave of pain, then the wave of stench. Neither..all that funny.
Soon after she left, the curtains were re-sealed and I was a sleep in my hot toxic cloud. I woke up intermittently from 8pm to 5am this morning ..but pretty much slept the night through for the first time in a week.

There had been 3 very small moments of progress on the poop front this week. Small being the operative word...finches, instead of eagles landing. I got another prescription for some magical pipe cleaning liquid. Had been taking it since Friday night but not until this morning did i achieve the ultimate goal. It was 8:15am and it came on without fanfare. Finally I pooped!

I wanted to yell at that poop for raising hell on me for the past few days. Something a kin to Jules Winnfield (Pulp Fiction) .. "I will strike down upon thee with great vengeance and furious anger those who attempt to poison and destroy.."
In the end all I did was look down upon it and say "Thank You". Then with all the vengeance and furious anger I could muster.. I flushed that bitch.

Immediately after, I called my family to alert them of the news. We were all thankful and happy the discomfort had ended. More than anything I was glad that I do not need spend the remainder of Labor Day weekend at Sloan. If the new poop meds didn't work within 24 hours that was the suggested procedure.

Now it's Sunday around 11a. It's freakin' Labor Day weekend. The sun is shining it's gorgeous out. I'm supposed to be on Fire Island with my family but I'm on the couch. All the curtains and windows are open ..crisp fresh air blowing in. I'm dressed and out of bed. I feel weak, almost flu-ish but I'm moving around doing laundry and organizing my front hall closet.. slowly. Then I sit and take deep breath's it's like I'm 80.

I'm super bummed I'm not enjoying the weekend out in the world.. but happy to be up, moving around and needing to be near the toilet.

Enjoy your beer and potato salad people. If you are driving by ..stop on over. I'm alive again.

antiques roadshow

It's 3:49am. Nobody tells time like that unless they are Jeff from Flipping Out or an Insomniac. I've been up since 1:12am. So, I watched Anderson Cooper and Antiques Roadshow. Roadshow obviously better in this situation. It's slow and simple and I'm not all that interested in most of the old crap so my mind doesn't wander much. But, now it's over the lights are off.. the mind is wandering. I'm wide awake. I need to google others and their R-Chop symptoms. I've got new one's. Sadly.. mine are not the one's people don't seem to like to talk about.

New Symptom 1 - Nervous Nelly
I've never been one to be nervous. Driving between two big trucks on a freeway I think..eh..I can fit. Or if someone say's let's go white water rafting down a class IV ..I go. Uhm...k. What kind of picnic do I pack for that?

Things like trucks driving down a rural road..usually don't get me nervous, scared or fearful. Now I'm jumpy. Today driving down street with my sister (she kidnapped me from work, and took me for a walk on the beach this afternoon) a truck was driving the opposite direction and it scared me. The damn thing was just driving down the road. Might have splashed a puddle and rounded a curve.. not even going fast. But I was petrified for a second. Very unusual..me no likey!

Point is .. here I lay. Seemingly calm. Seemingly "together". Going through the motions of processing this wacky situation ...and as Alison put it "this is heavy stuff and you have to manifest it somehow". I realize being a nervous nelly is now my some how.

New Symptom 2 - no poop.
It's inappropriate to some to talk about..but jeese... we all do it. Or at least hope to do it on a regular basis and I'm going through a quasi-medical emergency because I haven't done it.
It's been 3 days.. the doctors say I should call them after 1 day of not taking care of the deed. I should have called today, but I didn't. I had high hopes for a lengthy porcelain session. Alas, it has not come.

Upon dismissal of the first treatment they stress the need of poopage. You are sent home with the various pills to take at various intervals to speed along the process. I have taken the pills on time and diligently. Now, I'm lying in bed on a heating pad. Guzzling water and taking the various pills to aide in what is now I realize the inevitable poop-less hell.

This situation has me very uptight, very nervous and very uncomfortable. And yet... all I keep thinking about is my Poppy, Mr. Sol Siegel asking me "Pull my finger" or the saying "Never trust a fart". Cause either one... are the pinnacle of hope at this moment. I lie awake at 4:20am waiting for signs of movement.

What is the non-poop protocol? I can't even imagine what the nurse in the Oncologist's office will say tomorrow morning when I call. Take another type of drug? Come to Sloan?
Dare I admit and say it aloud...Enima? Ugh! I did not schedule this. I have things to do. Friends & Family stopping by. Work. TV to watch. Laundry to fold. A dog to pet.

My life hangs in the balance of a turd... and it has me nervous.