jenny's belly

Wednesday, August 31, 2005

Haiku for Healing?

I'm supposed to try some dumb new-agey things I've never tried before-- like Reiki (what, Raffi?) that has something to do with balancing energy, etc etc. I'm starting out with arts and crafts (seriously, I only have 4 thank you cards done, I am a miserable human being) but thought I'd give Haiku a chance because everytime I think of Reiki I think of Haiku first.

Maybe there's a blockage? :)

Staples in a row
Keep my stomach in my chest
mmm, oxycodone

Cancer surgery
Now chest tube site is weeping
Need a new body

Summer off from work
Short Term Disability
Pretend to be sick

Not enough pillows
Bed is uncomfortable
Sleep in the closet


(I'm following the traditional 5-7-5 syllable rules as I never learned free form in Mr. Buckley's 6th grade class.)

Tuesday, August 30, 2005

One More Day

Owwww my staples hurt like hell today. They aren't infected but they're irritated. They're red and... I'm not going to go into graphic detail but believe me it's gross. But anyway the drugs haven't seemed to work well today.

I can't TELL you how much I'm looking forward to having the staples out tomorrow afternoon. Because of the "issues" I called to push my appointment up but I only got one day sooner. I should hear back on pathology too. I'm ready for the response-- I think.

Well, I just ate a cookie. Idiot. It seemed like a good idea. It wasn't. :( I'm amazed at how my eating has changed. A bowl of rice krispees was "too much food" today. I had 2 pieces of cheese for breakfast and a shot-size bowl of jello, but somehow the rice krispees 4 hours later put me over the edge. My pre-lunch has been so evil lately it has ended up BEING my lunch.

Speaking of evil that commerical for "Exorcism of Emily Rose" scares the crap out of me, can someone please petition for it to go away?

Food has begun to betray me. Like a little bowl of fried rice. How bad can that be? As I learned yesterday, very bad actually. And I'd rather just not eat anymore. I'm a big fan of gatorade now, which I wasn't before. Maybe the blood donor was a gatorade fan! I think I saw that on TV; where you take on characteristics of people who donated organs to you. It probably doesn't work with blood, though, right? CREEPY!! :)

But it's been only two weeks since surgery. I'm pushing myself awfully hard to be "normal" again. Some things work... some things don't. And maybe once these f%*&ing staples come out I can get a good night's sleep!!!

:)

Sunday, August 28, 2005

Prescription Basket

Here's a picture of my various drug bottles.

I call it "Medical Salad with Chickens".



Don't panic too much, I mean Maalox, Tylenol and Vitamins are in there too. :)

Overboard

I got cocky and I'm paying for it. I was thinking that I could sleep in a bed all night, or at least periodically. I was also thinking that I could eat normal food.

*Peaches good. Donut holes BAD.
*Water good. Flavored water BAD.
*Eating at restaurants... okay, but are you sure you know what you're doing?

I think the donut holes nearly killed me. I thought I was eating them slowly but I guess not. It was all enjoyable until: DEATH BY DONUT!! Only Homer Simpson and I can say such a thing. Two lousy donut holes and I'm done for. :)

And I've been a huge fan of the flavored drinking waters for years. For some reason, now it burns the back of my throat like I'm drinking cigarettes. Cancerific!

I've been to three restaurants since leaving the hospital monday evening. I had the kids menu once (lots left over) and the adult menu twice. The first time it was like I took the whole meal home. I didn't have lunch today and was hungry by dinnertime (GIANT MISTAKE!) and since the food wasn't hurting and drinking lemonade wasn't hurting, I had a lovely time. I ate a bit less than half and was pleased with myself. Yeah, NOW I know I should have eaten even less, but I was HUNGRY in a RESTAURANT with FOOD in front of me. Well, I've got reflux, aka 'the return of dinner' and just now could NOT get comfortable in bed. I was up there for 2 hours and I've just decided to quit and came downstairs with my pillow and blanket to try to sleep on the porch. The bed is comfortable, but it's the way I have to sleep which isn't. I already have back pain.

I went to my favorite cross stitch store today to see Ellen, who I had last spoken to the day after I learned I had cancer. I wanted to give her an update and breached the subjects I don't really like to think about: Chemotherapy and radiation. I learned that insurance will pay for wigs and now realize if I have to go forward I can choose the "Lucy Red" I've always threatened.

I know I'll learn more with wednesday's appointment. It's another roadmark in the cancer treatment: surgical staples removed, stitch which held chest tube in place removed, and next steps discussed. Especially pathology. Everything they took out of me they sent for analysis. And results are surely back by now, but I don't want to hear about them over the phone. I've gotten enough crappy news over the phone to last a lifetime.

And maybe Dr. Osteen will say he got it all--end of story. But I'm confident in him as a brilliant surgeon, not as God. If he missed one cell it likely will come back again. So I'm actually a bit hopeful that they'll put me through the awful process-- kill everything, please. But at this point, I don't know anymore than you do reading this...

I'm going to try to go to bed AGAIN.
Love,
Jen

Saturday, August 27, 2005

Mmm Reflux

At some point when I was still out-of-it the nutritionist visited. I have no recollection of this so it's a good thing my mother talked with her. As Lisa describes below, this woman said I not only needed special food (requiring a person to actually go shopping for me) but if I was to have bread it would need a special toaster. Crumbs from one bread type must never cross another? I pictured my new toaster being fire-engine red.

My primary care doctor visited me not long after this. She thought all the Celiac "anti-wheat" stuff was funny and called the nutritionist a "Wheat Nazi". After reading up some more she called my mom and admitted it is kind of serious and likely will require a new diet for me.

But in the meantime, when I was told to start eating off the normal menu (and yes, the Pavillion had a menu) I could order anything I wanted. But it couldn't have wheat/oat/bran/barley, etc in it. Or milk products (hard to digest). Or lettuce (same). But otherwise, seriously, anything you want. I had a miserable time finding anything and generally went back to my "clear liquids diet" which I frankly love. Doctors weren't happy but since everything else was like eating jagged metal, at least *I* was happy.

I tried to order chicken salad with rice crackers for dinner sunday night...
* Jen: I just want the chicken salad, but no roll.
* Nurse Maureen: She doesn't want the salad kind of chicken salad...
* Jen: Yeah, the sandwich kind of chicken salad
* Food Staff: So you want a chicken salad?
* Jen: No, not the salad, the chopped chicken with mayonaise. See? Chicken salad.
* Nurse Maureen: Don't order the salad with the tomato and the grilled chicken.
* Food Staff: That's not the one?
* Nurse Maureen: No, it's the sandwich kind of chicken salad.
* Jen: [laughing] Now I don't even want chicken salad!
* Nurse Maureen: [laughing] I don't remember what chicken salad *IS* anymore!

On monday, when they were going to release me to the wild, I noticed shrimp cocktail on the menu and decided to order it (no wheat, no dairy, no jagged edges- sounds good!). I couldn't eat it because all the chewing made it really unappealing, but my aunt Jo arrived in the hospital to see me eating this gourmet lunch: "Oh...my...God. What kind of hospital is this?!"

I've been reading on the acid reflux a lot-- I know I'm going to have to follow a celiac's diet eventually, but I'm just working on being able to EAT at this point. I think I have to adjust the height of the headboard so that my head is elevated above my feet. I slept in bed last night (BED!) but I was propped up sitting and I woke up at 12, 1, 2 and got up at 4:00 mostly with back pain, not reflux. It's just disturbing that it won't go away. I think I'll always have uncontrolled reflux now. The only thing we have to keep food in our stomach while it's being digested is GONE now for me.

I won't show you the staples again :) Besides, they come out on wednesday (YAY!)

I'm looking forward to seeing my friends and extended family soon! I've left the house a few times this week, and have even eaten at Pub 99 (kids menu) and Fridays (LOTS of take-home). I can't drive due to Oxycodone and even when I get out somewhere I pace myself so I don't get exhausted. Basically, meeting for lunch or a trip to the mall is kind of out of the question, but only at this point. I haven't been out of the hospital a full week yet, so I can't ask too much of myself.

Anyway, I look forward to seeing people soon! And please know I'm working on my thank you cards. It's a big job but I sincerely appreciate all of my cards and little gifts. So many wonderful people, I love you all!!! :)

Friday, August 26, 2005

Pain Rate: 7

I counted my staples this morning-- I have 55. It looks like there's one about every centimeter, so that gives you an idea of how large the incision is. Very pretty. :)

It's the chest tube site which drives me nuts. I have to change the gauze pad almost every hour. It looks angry (I promise, no pictures) and there are old-fashioned stitches there because they had to sew the tube in place.

Thinking back to last Tuesday, I remember not being able to see. They tried to get me out of bed to walk but it was impossible- if you can't see you can't exactly take a turn around the place. They also hadn't figured out pain management yet. I had my regular doctor visits starting at 5am and by 8:30am there were orders for different meds, but I didn't get them until later in the day. Someone asked me to rate my pain and I gave a 7. "SEVEN!?" She was shocked. I took this to mean that I was rating my pain too high, but really she meant I shouldn't be in that much pain at this point. Anyway, it's her fault I never rated over a 4 again, even though sometimes I maybe should have.

My brother and his fiancee stopped by but I couldn't see them and can't remember what we talked about. I couldn't read the clock but when my eyes were open I tried to read it. I knew I slept most of the time but didn't realize I was sleeping for a few minute intervals. I asked my mother "is it still tuesday" about 5 times after waking up. That dreadful day would not end!!

When thirsty, I was allowed to suck on a damp sponge on a lollipop stick. And I was thrilled. My waterpops were really the only thing that would comfort the back of my throat (which incidentally still hurts).

Wednesday morning they pulled out the chest tube (YAY!) and much of the pain went down. My surgeon visited and stoic as he is, said I looked good (he still hasn't seen the incision since the operation though- I think he takes his team's word for it). He said I would probably be able to have my NG tube out on sunday. I was SUNK. This is the tube coming providing light suction from my stomach and out of my nose. Everytime I moved the tube it hurt my nose, and everytime I swallowed it hurt my throat.

I believe it was weds night that my uncle Bob and aunt Jeanne visited. I think it was at this point I announced my greatest dream was lime jello and a shower. My previous dreams were a good job and a fun car. I'd downgraded a bit.

I could see much better by thursday. I was starting to cheat the waterpops by sucking on ice chips too. My grandparents visited- I think they were surprised by how crap-tastic I looked. My mom said I was still white as a sheet. But I still had the tube in my nose, one in my neck, and in my arm. And since I was still in bed a lot I had to wear the booties. Huge cast-like things they'd wrap from ankle to thigh which would inflate to keep the blood moving. My walks around the nurse's station were painfully slow.

The worst for me was that my face was always hot. Not just hot but often sweating. The nurse's station had a little fan which I adopted on wednesday after a significant hot flash (aka medical reaction) but there were times when my feet were freezing. It's like my body is in different time zones.

They surprised me by taking the NG tube out friday morning. It was sweet, sweet freedom. They'd finally straightened out my pain issue (though I never remembered to push the buttons for the medicine), the WORST tube was out, my focus was back-- I could actually watch TV at this point. Friday night they announced I was gettng blood. I felt (and still feel) guilty. But I shouldn't. I really needed it. The next day my mother said I actually had color in my face.

But I was finally allowed to eat friday, and I went right for the jello. Life's sweetest fruit. :)

I'll write more about the Wheat Nazi later...

Wednesday, August 24, 2005

How Was *your* Monday?

My dad roped up an old cot with crappy matress so I can actually sleep in a "bed" with sheets which was put in my brother's room so I have a door and a TV at hand!
The sleep sitting up thing is really terrible, but it's what I face until my mid-section is strong enough.

Because part of my esophagus was removed--the important part thankyouverymuch, I have acid reflux regularly. It's not the burning feeling from eating too much food, it's a choking. So I wake up choking. And if I'm lying down flat I can't get up fast enough to STOP choking. You see how fun it is. :)

Monday morning I was very calm. My parents were with with me in the hospital admitting room, which was *FULL* at 5:30. People were standing. I know every patient was there with a person or two but it was still unreal- so, all of us are having surgery and staying overnight, huh?

I was called to check in and they went over my stats as usual, confirmed doctor and operation, collected my healthcare proxy, living will, etc. I of course agreed to be an organ donor but I'm psycho and won't donate my eyes (we can discuss later if need be). They put my hospital number on ID bracelets and used these as luggage tags. They put my suitcase and my mom's overnight bag on a hotel luggage trolley and a few seconds later they called my name.

A nice man with broken english (man: that's the waiting room. Jen to parents: that's where you'll be today. Mom to man: where is the waiting room? Jen: I just said... Jen's dad interrupts to ask where the waiting room is) had my operation location and brought my family through the halls and deep into the basement levels and eventually checked me into gurney #18. I changed out of my civies and into a hospital gown and my parents were allowed to sit with me for awhile. They put on the blood pressure cuff (here we go) and then took it off... this part was tense. I was not being paid attention to, but couldn't leave.

After a bit, they brought over my med id bracelet followed by some kind of a numbing med (no iv yet). They had me lay back on the bed (because I had been sitting up, cross-legged: the universal "I'm fine, what's all the fuss" position) and say goodbye to my parents. My mom could have made me cry but I asked her to just say bye and she would see me later. My dad kissed me goodbye and they were escorted to the patient waiting lobby.

I was terrified of the epidural. I thought it would hurt, but they had me begin to lose dignity by showing off my back (and therefore backside) to the adorable anesthesiogist who began counting and tapping... eventually a needle with a burn... back to the tapping and the counting (and if he mis-counts, I'm outta here). I lie back down, no pain. Shocking.

People start introducing themselves to me with bright smiles and they put on one of those hair thingys on me. I'm still not sure of why because they're not put on like a shower cap, shouldn't they be? What is this decorational? The people are all young (early thirties), but I'm impressed and have full confidence. Everyone wears turquoise. Even me. We look good. :)

They unlock my bed and start rolling me to OR #28. As I'm waiting to be turned into the room a nurse makes the vroom-SCREEEECH sound and spins around to me. He's the turquoise bandit until he pulled the mouthscreen (what? I don't know, you know what I mean) away from his face with a big smile: Jack Sharpe. Friend of my dad, hockey coach of my brother, father of a guy I went to high school with--- very senior OR nurse at BWH. I did NOT expect a familiar face and was so happy to see him. "You'll be out in two hours." "Uh, Jack they're telling me five or six." They handed him my chart. "You won't know the difference." :)

He exits and insanity starts. Everyone is doing everything, and I'm still awake because I insisted on seeing Dr. Osteen. My doctor walks in close to 7:30 operating time, I said good morning to him and he said good morning to me and walked behind me where everyone else was. They put the old oxygen mask on (it's only oxygen my ass) and told me to deep breathe. When 3 or 4 people tell you to breathe deep in the operating room you know you're going under. So I breathe...

And I wake up with more tubes coming out of places than I imagined possible. Side of my neck, my left side, down my throat, each arm... And that side one, which pushed through to my chest, was horribly painful. It's the first thing I complained about when I heard people trying to wake me up. I just learned today from my Aunt El who was with my parents that this happened in recovery.

I'll save my stories for beyond monday for later, but share a little something with you. It's a tiny, tiny part of the whole, just my belly, shows nothing obscene, and lets you see my clean, pretty line of staples (drunken staples per my aunt jo). And what the F is that blue dot? I have a blue permanent dot ONLY there.

"Surgery goes HERE"



I was allowed to wear the yellow "livestrong" bracelet the whole time but I just took off my med id bracelet today. I think I've been waiting for them to haul me back in...

Tuesday, August 23, 2005

Beddie-bye!

My MOM is turning into Nurse Rachet though, so that's not good. I wasn't allowed to post yesterday or today until just now. I was awake at 12:30 last night an thought about posting, but knew I shouldn't write any more than I should get in the car and drive to Cuba. I've been having horrible drug dreams. Crazy with a capital K and two Es.

KRAZEE dreams.

Like, my parents finally released the feral cats living in the attic and they're starved but won't leave our immediate house so now I have to worry about THAT.

I was released from BGH yesterday at 4:00 and after the lovely, feather soft ride of Massachusetts-paved roads I arrived home nearly dead. I was whisked off to my parents bed to rest. They stuffed me with pillows and and it just as chushy as the ride. I think my parents sleep on a trapezoid. That bed is made of marble with a flat top and steep sides. I'm convinced I'll roll out, but also sure that would be okay just to be free of it.

After 30 minutes of that I went into the recliner in their room. MUCH MUCH better. I figured THIS is my new home. I so desprately just want to go lie down and be done with it but someone cut me in half and sewed me back together so there is nothing more comfortable than being on my back.

But after resting until about 9 I got up and went down with my parents and Aunt Jo into the great room to rest. The chair I thought would be comfortable was too soft with no neck rest. I moved over to the loveseat where I was parked until about 10:30 with frequent adjustments necessary.

I went up to my brother's room where I was going to sleep (and have been since "Cancer! 2005") got into that bed and apparently looked as uncomfortable as I felt. At this point, I think of the recliners on the porch. And if these don't work I'm going to go break into a hospital-supply store.

I got in the first recliner and knew THIS would be my nice new home. The 2 loveseat dual-recliners are very comfortable, but not exactly new. And while these are considered old, they replaced the recliner still in my parents bedroom. Oh, here's a picture of one with puppies on it.



I got up at 1:00 from a series of krazee dreams and switched over to the other recliner without the streetlights in my face. Back to sleep until my mom woke me at 2 because I was yelling out (feral cats). I was back to krazee dreams until 5 when it took me 15 minutes to go up the stairs, use the bathroom, and get back to bed... and I finally slep until about 8am.

But I took a shower this morning which was fantastic. And, it was the first one by myself in a week! I'm amazed at where dignity goes when you're at the mercy of others. I had a team of amazing, amazing women (and, in a krazee dream someone named Neil) taking care of me, but dignity goes away and you don't even care. I guess because you appreciate the help or the service so much.

Monday, August 22, 2005

One Month

It's been ONE month since my cancer diagnosis! (damn, that was a long month)

Medication time...medication, everyone...

Hey all...

Jay has kindly sent a picture of Jen's "Least Favorite Nurse." So THIS is what Jen meant when she said some people shouldn't be nurses...


Talk to you guys soon!
Lisa

Jen speaks!!!

Hey all -
Just got this from Jen (I'm sure she sent it Sunday night...it's now Monday morning and I'm officially a slacker), I'll let her speak for herself!!

It's Sunday evening and I'm in my Barbie glamour hospital room being rather
relective. I may be going home tomorrow, which considering how things felt is not a small miracle.

I've learned that nursing is a calling and extremley special people become them. Like all vocations related to callings some people are nurses and SHOULDN'T be.

Beds are like sandwiches- a sandwich someone else makes always tastes better,
and being tucked into bed is better than getting in so poorly you have to call for
a nurse. ("I gave up." "I know, I can hear you breathing.") I can't believe I have gotten into bed "wrong" a few times.

You can have gas so severly stuck in your body it eventually passes through your
head. And it makes a sound (others can't hear it though, cuz I've asked).

Adjustable beds with handrails ROCK. We must stop making fun of the commercials and place orders.

Just because you can eat almost anything per doctors orders, doesn't mean you should stop with the broth, watermelon ice and lime jello.

It's possible to be wide awake on moment and exhausted and overtired the very next.

I can't reach the light or tv remote and don't care.

I'll let Lisa know what's going on tomorrow and whether I'm going home or if I'll just hang out some more with Barbie. You know, check out the rest of the joint, try on some outfits.

Love and peace to all of you!

Many thanks,
Jen

Sunday, August 21, 2005

Homeward bound...almost!

Hey everyone!

'Just talked to Donna (Jen was sleeping), and the plan is still for Jen to go home on Monday - YAY!! Apparently the first attempt at a soft diet didn't go as well as planned, so they're sticking with the clear liquids for a bit longer. Jen has apparently fallen in love with Watermelon Italian Ice, though, so this is a very good option.

(Jen, is this the same as Watermelon slushies from Mr. Nick? I am ALL over that when I'm there to visit next week!!)

Jen will have to meet with someone from the Dietary Department before she goes home, although it will probably not be "Miriam, the Merry Nutritionist," or, as she has been (not-so-affectionately) nicknamed, "The Wheat Nazi."

NO TOAST FOR YOU!!!

Anyway, all, I'll keep you posted as I hear anything, and with any luck, the next time you hear from me, it will be to announce that Jen is home!!

Take care, Lisa

Saturday, August 20, 2005

Saturday news (sorry, no witty saying!)

Hi all -

(I try to cut down on my weekend coffee, which cuts way down on my entertainment value...Jen, we need you back!!)

Great news! I talked to Jen today, and ALL the tubes are gone!! She's been cut off. :-) She's had Jello AND broth...big time stuff!! The plan is still for her to go home on Monday, and fortunately her Aunt Joanne will be flying in from Wisconsin (Jo, please correct me if I'm wrong!) to help Jen get acclimated to being back home. She'll probably have to keep reminding Jen that she CANNOT go running around with Bodo and Krieger...not the first day, at least. :-)

This is great news!! 'Hope you guys are all having a wonderful weekend, and I'll talk to you soon!

Lisa

Friday, August 19, 2005

Picture of the Penthouse Diva :-)

Hi everyone - Here's a picture from Jay....

This was taken today of Jen and her "Drug Tree."

(Jen said this was OK for you to post on the blog)
Jay



Now, Jen asked me to specifically point out that her hands are on her stomach...her STOMACH, people! Not up further, she wanted me to note. :-)

Looking at the expression on Jen's and the nurse's face, I can only imagine the conversation...

"Wait, Kevin Spacey really isn't my doctor?"
"Nope, 'fraid not. And Belichick really isn't cute, either."

"C'mon, just ONE peanut butter cup sundae?"
"No, but I have a lovely sponge stick for you....I think this one is banana-flavored."

I'm sure there are much funnier possibilities that others can come up with....any takers?

Talk to you guys soon!
Lisa

News straight from Jen!!

Hi all!

Great news! They were able to take out the NG tube (which stands for "nasogastric" OR "not good"), which is what they were thinking they would need to leave in until Monday. Because that lovely tube is out now, I was actually able to talk to Jen on the phone just now! She sounded very tired, but the same Jen that we know and love. She was greatly looking forward to having Jello for the first time when we got off the phone. :-)

Jen said that she's been able to get about half of her various tubes removed, and that they're talking about her probably going home on Monday!! Until then, she's getting to walk around and enjoy her "room full of lovely flowers"...she really loves all of the arrangements that she's received!

She also mentioned that Jay has taken at least one picture of her that she has approved for Blog posting...I'll put that up as soon as Jay emails it to me...

Jen also sent me an email from her Blackberry last night ("Blackerry use once or twice in the hospital is approved, right Paul??"). She commented on her lovely medication cocktail and the Patriots game ("I must be on medication because Belicheck is cute. :)"), as well as the spa treatment she's received ("My throat hurts from the NG tube going from my nose to my stomach. I get all excited when they bring me chipped ice. My mom gets high tea with a cup of tea, a sandwich, and a dessert. I probably couldn't swallow anything except the tea anyway. Patient abuse!").

So, everyone, Our Jen is back. :-)

I'll post pictures when I get them, and post more info over the weekend as I'm able to!! Happy Friday, all...it's a much better Friday than last week at this time!

Lisa :-)

Thursday, August 18, 2005

One more post for Thursday

Hey, guys, it's already Thursday! Jen - Tuesday's finally long-over!

Here's a message from Jay...this is proof that Jen is becoming completely spoiled in her posh penthouse suite...

"This is what Jen thinks is awaiting her at home. Drugs are bad for you."



Hope you all have a great night!
Lisa

p.s. Jen, when you get to read this...all I can think of is that kid at the Museum of Science scoffing, "They're not people." In order to get this room, does someone need to pull your brain out through your face?

Life's simple pleasures...

Hi everyone!

Just got off the phone with Donna...when she called me, Jen was in the process of walking around the nurses' desk! Can you believe it? Just 48 hours ago (now I sound like my Mom!), the big goal was to sit up...now she's trucking around the unit!

Dr. Osteen was also in to see them, and told Jen that it looks like it will be around Monday that they can take the rest of the tubes out...Jen was pretty disappointed, because that means she won't be going home on Monday as she had hoped. She seems to be getting better everyday, though, and taking Dan's advice to be up and walking to get rid of those blasted cuffs!

Jen also received a wonderful gift today of a globe to replace the one that walked away from her desk a few months ago. There was no card included, but she immediately concluded that her fellow B&W's survivor was responsible. So, from Jen: Dan, thank you!!! On the table next to her bed, she has flowers, her "hot flash fan," and her globe. :-)

Of course, as Jen still has all sorts of tubes in, she isn't able to have anything except ice chips at this point. Donna told me that on her last jaunt around the nurses' desk, Jen commented that "some idiot didn't even finish their cake...don't they know that there are starving people at Brigham & Women's?!?"

I don't know about you guys, but that may become one of my new sayings. Jen, when you read this, I think you should stitch that on a pillow!

Okay, guys, I'm off to a meeting. Can you believe that they want me to work this week?!

Talk to you soon...
Lisa

Oops...

Hey all,
Okay, so the pictures from Jay are *above* the message about the "Merry Nutritionist." More proof that Jen needs to get back to blogging and save her blog from her technologically-challenged friend!
- Lisa

Movin' on up...

Hi all -

Jay, Master of the Digital Camera, has kindly sent more pictures so we can see where Jen's been hanging out. Jen still hasn't sanctioned any pictures of herself to be posted online, but I'm sure those will come in good time. :-)

So, here is a picture of Jen's Suite, complete with microwave, mini-bar (okay, a fridge), and hardwood floors. Not too shabby!



Speaking of not too shabby, here's the view from Jen's room...



Finally, here's a picture of the towers where Jen is staying. According to Jay, Jen is on the top floor of the one on the far left.



Thanks again, Jay, for keeping us updated!!! I'll post more in a bit, guys, with an update from Donna...
Lisa :-)

Personalized Pop-Tarts

Good morning, all!

Lots to update, since yesterday afternoon was crazy (complete with me forgetting my apartment key in my office, only to discover this when I was at my front door and had to drive ALL the way back to work...but enough about my absent-mindedness!)...

I talked with Donna, who had all kinds of good news...some of the fun tubes have been removed (YAY!), Jen was able to get up and walk to the hallway and back (YAY!), and Kevin Spacey finally arrived with margaritas in hand...



Unfortunately, at B&W's, they frown on cigar smoking on the units, so poor Kevin was promptly escorted out of the building. He did leave the margaritas, though, so it's all good.

Donna told me a VERY funny story about a consultation they had yesterday afternoon. You'll remember that Jen previously mentioned being diagnosed with Celiac Disease, or an allergy to wheat/gluten. She had also mentioned that she's never had any problems with wheat before, and Donna explained that her doctor found evidence of early-stage Celiac's that may eventually cause problems when Jen is older. She's not having problems now, though, and certainly not to the extent that some have, where they have terrible reactions if they even look at a piece of toast.

Anyway, yesterday, Donna and Jen (who was faking sleep) were visited by "Miriam, the Merry Nutritionist," who explained to Donna that she was EXTREMELY concerned that no one had ordered a special gluten-free diet for Jen, and that if Jen were to have any wheat products at all, the world as we know it would cease to exist.

Miriam, bless her heart, went on to say that she would IMMEDIATELY request a "Designated Shopper" for Jen - no, I'm not kidding - in order to buy all of these special wheat-free foods for Jen (rice bread, etc.), as they did not have them at the hospital (so, Jen is the first person in the history of Brigham's to potentially have a wheat allergy? Who's running this popsicle stand? Can Jen have popsicles? I digress...). In addition, Brigham's would apparently have to procure a COMPLETELY SEPARATE TOASTER, just for Our Jen, so that she would not be exposed to any wheat products from other patients' breakfasts.

Miriam then bustled out of the room, leaving Donna to marvel at how we got from "this could cause problems when Jen is older" to "Jen's head will explode if she even THINKS of wheat!" At that point, Jen, who had been faking sleep throughout, stated, "I've been eating wheat with no problem my entire life. And, I am NOT eating rice toast, for Pete's sake!!!"

Donna then called her sister-in-law, Joanne, who is a registered nurse. Joanne listened to the story and then started to laugh. Her take on it was that some well-meaning person had requested a nutrition consult, and Miriam had seen this reference to Celiac's in Jen's chart and assumed that Jen was having some severe allergic reaction to wheat that needed IMMEDIATE attention. Joanne was just suggesting that Donna speak with Jen's primary care physician about this, when who should walk into Jen's suite! Donna then told the story to Jen's physician (whose name I've forgotten), who also started to laugh. Long story a bit longer, Jen needs neither a "Designated Shopper" nor a Personal Toaster, and Miriam can hopefully sleep better tonight.

See, when Jen has surgery, she does it up right! A penthouse suite, Designated Shopper, Personal Toaster...nothing but the best for Jen!! Are we sure that "surgery" wasn't a euphemism for "spa vacation?"

Anyway, guys, check out the pictures from Jay under this post...not too bad! Jen continues to get better with each day, and will hopefully be back to blogging very soon. We miss you, Oh Funny One with the Personal Toaster (oh, she's never gonna live that one down!).

Talk to you guys soon!
Lisa

Wednesday, August 17, 2005

'Hope those nurses can duck!

Hey all!

'Just talked to Donna, and she confirmed what Jay had said. Jen is much more comfortable and alert now...although I didn't get to ask Donna about any cruise ship dreams. More good news is that "Our Jen" seems to be coming back. Here are some (paraphrased) quotes from yesterday/last night:

"Mom, is it Wednesday yet?"
"No, Jen, it's still Tuesday."
"Oh..."(falls back to sleep for 20 minutes)
"Mom, is it Wednesday yet?"
"No, Jen, it's still Tuesday."
(*sigh*)(falls back to sleep for 1/2 an hour)
"Mom, is it Wednesday yet?"
"No, Jen, it's still Tuesday."
"UGH! Will this day NEVER end?!?"

When asked by a nurse repeatedly (although not clearly, apparently) to roll over on her right side, Jen finally responded, "Listen, I'm half asleep, I don't know what you want me to do. Just tell me and I'll do it!!"

At one point, one of the nurses or nursing assistants commented to Donna that Jen "doesn't say much, does she?" To which Donna replied, "Oh, she will." Not long after, when they had her roll to one side, Jen let out with a mild exclamation of her displeasure (hey, this is a family site!) and Donna told the nurse, "There she is!"

In addition, you'll all be happy to know that Jen has announced that she's ready to go home now. :-)

So, the goal for today, according to Donna, is for Jen to get out of bed, walk to her chair, and sit THREE times today. I'm hoping that the nurses who "ask" her to do this (i.e., "Get up!! Get walking! You can do it!!") can bob and weave, 'cause Jen will likely tell them exactly what they can do with their chair. :-)

I think if they tell Jen that she can have tea with Dr. Spacey once she's been up and walking, she'll be tap-dancing across that penthouse in no time.

Talk to you guys soon!
Lisa

Photo from The Penthouse!

Hey all!

Jay was kind enough to forward a picture from Jen's room at B&W's. Here's his message:

Lisa:
Here is a photo to paste on Jen's blog. This is her doctor opening the door and
checking on her. : )
Jay



Okay, so how do I get in on this whole surgery thing? Really, I'm not feeling well at all...cough, cough...sniffle...I'm feeling kind of woozy...

I called & left a message on Donna's voice mail to see how Jen's doing this morning. Jay's message last night was definitely encouraging! Of course, this morning's message calls into question if it's really the meds that are making her sit up...

Talk to you guys soon!
Lisa

Tuesday, August 16, 2005

Tuesday night update from Jen's Dad!

Hi everyone!

Here is an update on our favorite penthouse diva, compliments of her Dad, Jay:

Lisa: Here is the latest update that you can cut and paste as of this evening.

This afternoon, the staff adjusted Jen's pain medication delivery to make her more comfortable. Her coloring is back, and she was able to sit up for the first time. The tubes are still in place, but expected to come out soon. She is sometimes dizzy from the pain killer. This means that she is on the verge of fantasy vs. reality. (Jen thinks she is on a cruise ship with really bad Margarita drink room service delivery. Please don't ruin this image for her and tell her she is in a hospital.)

In a few days, if she feels OK, I will bring in her new Macintosh Powerbook so she can see the comments on this blog and add her own. She had dial-up Internet access in her room. - Jay

THESE are the dreams that we need to tap into, folks! Hopefully, I'll be able to talk to Jen at some point on Wednesday or Thursday and hear all about her journey across the Himalayas with the members of Duran Duran and Johnny Hates Jazz.

Many thanks to Jay for keeping us updated! Don't worry, Jay, we won't ruin the dream for Jen. :-)

'Hope you're all having a great night! Talk to you soon...
Lisa

Tuesday morning (afternoon?) update

Hi everyone!

First of all, I just want to thank everyone who has visited this site and posted their expressions of support and encouragement for Jen! I know it will mean so much to Jen when she's back online to see how many people are in her corner. As someone who has been SO lucky have a wonderful friend like Jen for so many years (I won't say how many, but suffice it to say that Jen and I have witnessed the rise and fall of "Big Haired 80's Metal" together), it means so much to me as well to see how many people support Jen throughout this whole process.

(It was suggested to me that I remind/point out that in addition to my posts on the main page, people are also able to post and read other's comments about each main message by clicking on the "Comments" link at the bottom of each post. For all of the "Jen-News-Junkies," you can stay up-to-date by seeing how many new comments have been posted! Thanks very much for the reminder!)

I just spoke with Donna (please also see Jay's (Jen's Dad's) comment under "(Probably) Monday's Last Post"), and she said that Jen is still "pretty uncomfortable," but that the Head of Anesthesiology has been to see her and is working on getting her pain under control. Once that's happened, Jen should be able to move and cough and think about getting up to walk. Then the real fun starts!!!

Well, folks, as much as I would love to stay and blog about my best friend all day, they're actually expecting me to work today. :-) Keep those great comments coming, and I'll post more as I hear more news!! And, with any luck, the sequence of events for Jen will be:

1) Moving
2) Coughing
3) Walking
4) Blogging.

We miss you, Jen, and can't wait to hear from you!!

Talk to you guys soon!
Lisa

Monday, August 15, 2005

(Probably) Monday's Last Post

Hi everyone!

I just checked in with Donna, and Jen is out of recovery and in the Hilton...I mean, her private, tea-at-4:00 room at Brigham's. When I talked with Donna, Jen was meeting with the pain management physician, or, as Jen will likely call him, "Dr. Feelgood." She was awake and talking, although she was having some considerable pain (gee, imagine that!). Hopefully they can get her set up with the good stuff very soon!

Donna has given me full permission to give out Jen's location (so the CNN helicopters can get a better view): She's at Brigham & Women's Hospital, 16th Floor, Room 77C, in the Shapiro Pavillion (Jen, when you read this, give a "shout out" to the guy I had a crush on at UMass for me, would ya?). She'll likely be there through the weekend. Donna met with the Chief Resident who worked with Jen, who said that she is very optimistic about the amount of her stomach that they were able to leave intact. They did take the sphincter between the stomach and esophagus, so Jen won't be able to eat lying down any more (I think that rules out keg stands, too, Jen - there goes Christmas!), but all in all, it's very good news. The pathology report won't be back for another 7-9 days, but we'll take that one day at a time.

I'll keep everyone posted as I learn new info...thank you SO much for everyone's prayers and good wishes!

Take care! Lisa

Even better news!

Hi again, all!

Donna just called me with the latest...

Jen is out of surgery and in recovery. The surgeon called them (Donna hopes to meet with him in person a bit later on) to give them the update. Here is what Donna told me:

They only needed to take half of Jen's stomach, and only 5 centimeters of the esophagus.
The sphincter between the stomach and esophagus is still intact.
In the surgeon's words, "generally everything went well."

Donna said that they'll hopefully be able to see Jen soon, and that they'll probably talk to the surgeon again in about an hour.

All the prayers and good wishes are working!!! I'll post more as I hear, and hopefully I'll be able to talk to Jen before the end of the day and hear about those morphine dreams. :-)

~ Lisa

Update on Jen!

Hi everyone!

Since I know everyone is anxious to know how Jen is doing, I'll get right to the point....:-)

I spoke with Donna about 40 minutes ago, while I was on the bus to work (hey, it's not even 8:30 here yet!). She told me that a friend of the family, Jack Sharpe, is a surgical nurse at Brigham's working today and had a chance to see Jen before she went under anesthesia, after her parents saw her. According to Donna, Jen recognized Jack and they were able to talk a bit before she went to sleep. Jack said she was doing well and that there were no difficulties with anesthesia.

Here's the great news, from where I sit: Jack told Donna and Jay that the feeling in the OR is "very positive," and that they feel the cancer is "incidental," "found by chance," and that everyone feels that it was caught very early. It's believed that the lymph nodes are NOT involved, which is EXCELLENT news.

As Jen had written in an earlier post, they do plan to take out her entire stomach and part of her esophagus (an esophagogastrectomy). My understanding from talking with Jen and Donna is that this is a very aggressive way of treating this type of cancer, but offers a much better chance that there will not be a recurrence. This is my understanding, mind you, and Jen can give me a verbal flogging when she's back to posting if I'm wrong. ;-)

Donna estimated that they probably won't hear any more news until 1:30 or 2:00, when Jen will probably be out of surgery. I'll post more as I learn anything new!

As I said before, this sounds like VERY encouraging news from my perspective. Keep the good wishes and prayers coming!!!

~ Lisa

Sunday, August 14, 2005

One Day Left (with mexican lollipop tangent)

I'm convinced they make the day-before-surgery procedures so unbearable that you actually WISH for the surgery.

It's 6:30pm and I'm still trying to get enough energy up to do *something* today. I have 400 potential activities and none of them interest me except the nap one.

Oh, my mom went to the store to upgrade my "clear liquid" selections and came back with (among other things) some yummy lollipops. Despite drinking water all damn day I think I'm still dehydrated-- the fact they're made in Mexico is extremely amusing to me.

* Cha Cha Cherry: A good eat that easy to dance to. (What? Don't dance with a lollipop in your mouth! Why don't you just run with scissors then stick your fingers in a light socket, stupid.)

* Peaches & Cream: Like lazing in a porch swim on a Georgia summer afternoon. (Look, I've been to Georgia, and I intend to keep the vow that I will only PASS THROUGH Georgia in the future.)

* Strawberry Davine: Just-picked taste without the muddy shoes and bug bites. (Muddy shoes?? Where are they getting these strawberries? Also, what is davine?)

* Orange Ya Sweet: Aw, shucks. (One word: lazy.)

* Strawberries & cream: Milk this one for all it's worth. (What does that even mean? Milk the lollipop?)

I have to be at Brigham and Women's tomorrow morning at 5:30am, meaning we're leaving about 4:30am. My surgery is scheduled for 7:30am. I'm not sure if this means everyone is ready to go and I'm knocked out already, or if they finally bring me into the room at 7:30... I just know I'm first on the list, but other O.R. issues could push me back to a later time (emergencies, etc).

My surgeon anticipates about 5 or 6 hours of actual operating time. As I've described below, they're removing at least the top portion of my stomach and the lymph nodes which have surrounded the area looking for hand-outs.

I would have done a fun procedure where I could donate my own blood to be given back to me during surgery, but since I'm anemic they won't allow it. I will have to get blood transfusions, and though I've donated my blood many times in the past I can't help feeling that I'll be taking blood supplies away from people who really need it!! While it can't be directed at me, I encourage you to donate blood if you can.

Though I didn't mention it last night, I want to especially thank all those who have never met me: From ladies my aunt works with to neighbors of friends, and everyone in between, I'm so blessed to have you wonderful people on my side! I've received beautiful messages of hope and some incredibly thoughtful gifts, all from people who do not know me at all. I'm so completely blown away.

Maybe it takes a life-changing moment like facing cancer for me to put things into perspective? Thanks to you (that's right you, reading this right now!) for thinking about me, checking in to see how I'm doing, and sending me your kind words. I appreciate it very much and know I'm not going through this alone!

I leave this in Lisa's hands, but you'll hear from me again soon...

Hello Clear Liquids!

I had one of those amazing salads at Chili's for dinner tonight. It was so good. That's the last of the solid food for awhile! But tomorrow's menu is spectacular: chicken broth, water, apple juice, jello... and my Aunt Jo said sherbet is a "clear liquid" so that's on the list. Or maybe she said it's a soft food. Anyway, I'm going to have some.

There are four pills I have to take "at bedtime" tonight. Which is dumb. They should have been more specific. My bedtime is anytime. I woke up at 7:30 this morning, took at nap at 10:30am, woke up at 4pm, and now it's 12:45am. I'm not 100% certain what day this is.

Oh, here's my hospital:

I'll be there from monday until at least the following monday, August 22. Which, I'd like to point out, will be precisely ONE MONTH from diagnosis. I can't believe as of now it's only been 3 weeks. It has felt like 6 months. Sometimes I even feel like I've always had cancer.

I love the cards I've been getting. I'm so happy that three of the four best friends I've ever had have been in touch with me: Pam E, Tina L, and Lisa H (Becky C where the heck are you?). All of my friends have been wonderfully supportive, with cards and hugs, and my family has been amazing. Not only my parents, but my HUGE LOVING FAMILY! I feel so undeserving but appreciate it all very sincerely.

Tomorrow will be a very, very low-key day. I have to start taking meds tonight, as I mentioned, and have a lot more to take tomorrow, all in prep for the surgery.
I'll probably post again tomorrow night.

Incidentally, I turned off my CPAP machine last night because I thought it was near morning. I remember doing this! And thinking back, I'd say it was probably about 11:30pm. Sure, it was near morning in the grand scheme of things.... :) I have to not do that again.

Saturday, August 13, 2005

Testing... one, two, three... is this thing on?

Hi everyone!

Thanks again to Jen for asking me to keep everyone updated on her progress through this blog while she is otherwise detained (not posting due to general anesthesia - no dedication, that one!). I'm still working on getting Kevin Spacey to visit her at Brigham's, but I may hold off so that he comes to visit while *I'm* there to visit, if you know what I mean. :-)

I'll be in close phone contact with Jen's mom, Donna, particularly on Monday, and will update things as we find stuff out from the medical team. I'll also try to get on the phone with Jen as early as possible, mainly to be sure she's okay, but also to find out about those nifty morphine dreams...

Seriously, though, Jen...there are literally people all over the world who are praying for you, your family, and your doctors. You know that you're not doing this alone, and that we all love you and can't wait for you to be well on the way to recovery. Then, my friend, we are SO going on a cruise. If this doesn't call for a stateroom with a balcony, I don't know what does!

I'll post more on Monday, everyone!!

~ Lisa

Friday, August 12, 2005

Taking the Helm

My best friend Lisa has agreed to update this page while I'm having plastic surgery or whatever it is I'm really having done on monday (because it can't actually be cancer, right?).

She will be in regular contact with my parents and will be able to let all of you know what's going on. She just started a new job so I don't think this will be a play-by-play of the surgery, but I trust her to update when she thinks its necessary. She has a doctorate degree, you know. :) I call her Dr. Crazy, but that's me.

I'm actually feeling more calm now as the surgery day approaches. Maybe it's just out-right denial. Maybe it's one of those cool things where your brain shuts off. I have become a professional sleeper, which is very, very good. I practice my deep breathing when I can and I'm reading the silly though useful and often-recommended "Prepare for Surgery, Heal Faster" book (without the cd/tape... now I wish I had gotten it though! arrghghg!).

I can't say "I'M READY!" but I'm willing to say "Let's get this overwith."

Tony Snow, a TV journalist who has nearly beat colon cancer diagnosed in February, said the worst part was waiting for the surgery. After surgery you can be actively involved in your healing and recovery. Before surgery you feel worry and panic and sometimes even helpless.

It's good to know what I'm feeling is really normal.

Thursday, August 11, 2005

But Who Will Update?

I'm working on ways to update the blog monday via guest post(s) and haven't figured out yet if I can post while at the hospital. Or rather, I'm sure I *could* find a way to post after a day or two, but *should* I?

"Ow my stomach, more morphine... hey, did I tell you that President Roosevelt is my surgeon? It's true. Also, I just saw a car float by my 6th story window."

If you've got any questions for me, please feel free to leave them in the comments section. You don't have to register for blogger (really)... where it says "choose your identity" below "Leave your comment", just select "OTHER" and type in your name. Click publish and you're all done. :)

I really, really stink at responding to email right now. And I'm sorry but I really do read all of them. I know that's what famous people say, and I promise I won't hire a team to ghost write return letters, but it's hard to respond sometimes. You're all saying such wonderful and supportive things, I just don't know what to say!

I hope "Thank you" is enough for now. :)

Tuesday, August 09, 2005

Cancer Notebook



I thought I'd share a glimpse of my evil cancer binder. It should come with a holster or at least a belt attachment of some kind. Its full to bursting already and I have to bring it to all my appointments.

There will be a great bonfire when all of this is overwith. :)

11-hour nap

I can't believe I took a nap at 3:00pm yesterday and woke up after 1:00am.

I had pre-op *again* yesterday morning, but each of the three times I've gone this past month have been easier. It was a great hobby, but I really think that's the last time I'll have to go. (Incidentally, did you ever notice every channel has "real life surgery" after midnight? I've turned off three so far.)

The sleepy-time machine is lovely. I actually don't mind the mask THAT much. I think compared to the childhood evil of Vick's vapo-rub and accompanying scratchy washcloth, this one is not as bad. I have trouble sleeping with it for long periods of time, however. I can hear myself inhale and exhale which is annoying, and it takes literally five minutes to learn how to wear and breathe with the machine running... but it will be okay eventually.

I called my surgeon's office before my nap, assuming Dr. Osteen would want to see me this week. He has reviewed my endoscopic ultrasound results and "is planning to move forward just as he described last week". Sooooooo he doesn't need to see me, and there is no change, and I can say my operation now. I'm not sure if I can spell it though. Ready? Esophagogastrectomy. Holy crap that's ugly.

My surgeon is going to go into my abdomen and decide by look and feel just what he needs to take out. I know he doesn't want to take any part of my esophagus, but if it's pre-cancerous it's GONE.

I love all the positive feedback I've been getting, but I still have to prepare for a rough surgical procedure. I have to remember that by this time next week I'll not only be long out of the O.R., but I'll have taken a few turns down the hallway. I'm fully aware they're going to pressure me to walk only a few hours after completing surgery and I'm going to try not to punch any nurses who will make me get out of bed.

:)

Other things on TV at 2am...
* A live jewelry auction with NO bids and an increasingly insulting auctioneer "Come on people, it's not that hard."
* A 10-piece knife collection on home shopping network. These are the craziest knives I've ever seen. What are "finger holes"? Why is one of these knives called "The Undertaker Warrior"?
* A florist in a pretty blue dress collecting hippo poo. A baboon eating... OK, what in GOD'S NAME IS THIS SHOW?!!?!? I think the Animal Planet is actually showing some sort of "dung" program.
* Poker
* More Poker
* A woman having a 140 lb tumor removed from her back
* A skincare infomercial

Okay, I guess it's time to go back to bed!

Friday, August 05, 2005

Symptoms

I've described the symptoms to a few people, but tell me if you had any of these problems you would think "I have cancer":
* Heartburn
* Discomfort or pain in abdomen
* Nausea and/or vomiting
* Diarrhea or consipation
* Bloating after large meals
* Loss of appetite
* Weakness and fatigue

So you can understand why my surgeon called stomach cancer especially "nasty"-- at what point would you notice you have any of the above and decide you need to go to the doctor? And when describing these symptoms to your doctor, at what point would your doctor order emergency surgery and not bed rest or chicken soup? Because really, you might have cancer... Or an ulcer... Or a stomach bug. Dr. Osteen still can't believe I don't have symptoms.

Stomach cancer is rarely caught early. It's found when it has moved beyond the stomach to other organs, such as the heart, pancreas and liver. Patients are often told about their chances for remission, but not a cure. By the time symptoms are felt or the patient receives the attention he or she needs, it's sometimes too late to do much but discuss those wonderful words "quality of life."

Let me tell you how it felt when my first surgeon told me those words. It's life-changing. "Quality of Life" is not a happy phrase. And considering it was preceded by commentary on where my incisions might be (abdomen, chest *AND* neck), how many tubes would be sticking out after surgery, whether they'd need to take my entire stomach out, attaching my esophagus to my colon IN MY NECK, etc etc etc...

I have been through a ringer.

My friend Dan (Hi Dan!) thinks part of this is a change from "just relax and we'll take care of it" to a more patient-friendly warm fuzzies policy. But for awhile there I think I was part of the surgical team deciding my plan of action. "Gosh, can we leave as much of her stomach as possible? Mammals kind of need those."

I'm feeling much more in control of the situation now, but I have a consistent knot in my stomach from dawn to dusk. It's probably there when I'm sleeping, but it doesn't wake me up. I know it's anxiety (or as I like to call it- vomiting butterflies) but it's annoying that I can never stop thinking about the cancer, EVER.

And I'm so clearly in a risk group for stomach cancer:
* Most often found in people over 55
* Twice as often in males as females
* More common in black people than white people
* More common in Japan, Korea, Eastern Europe and Latin America... than in the US
* Foods which are preserved by pickled, smoked, salted or dried may play a role.
* Exposure to dust and fumes in the workplace

I proably should have quit my job in the Latvian coal mine years ago, but I'm sooo close to retirement, and you really can't beat the free pickled pigs-feet sandwiches.

[Credit: National Cancer Institute.]

Thursday, August 04, 2005

Me and My Apnea

I got my sleep apnea CPAP machine today. It comes in a fantastic carrying case which I'm sure will become the latest rage in haute couture. They said I have severe sleep apnea which I could accept but didn't know what it meant...

With each "episode" you stop breathing correctly, and in order to breathe again, you wake up (which you may or may not remember). I had an average of 51 in 60 minutes. Good grief, no wonder I'm so tired! And to add to it, the test monitored my oxygen levels, and it seems I take extremely shallow breaths when I sleep. My awake oxygen level is about 99-100% as it should be. My sleeping oxygen level was high 70% to mid 80%.

I think this machine is going to make a *huge* difference! And seriously, if you snore, or know someone who snores, consider having a sleep test done. It's painless and you have a private bedroom while they monitor you overnight. Snoring or complete exhaustion for no apparent reason shouldn't be ignored! Here are some other symptoms:

* Restless tossing and turning during sleep.
* Nighttime choking spells, sweating, and chest pain.
* Waking with an unrefreshed feeling after sleep.
* Having problems with memory and concentration.
* Feeling irritable and tired or experiencing personality changes.
* Morning headaches.
* Episodes of not breathing (apnea), which may occur as few as 5 times an hour (mild apnea) to more than 50 times an hour (severe apnea).

[Credit WebMd.]

Tuesday, August 02, 2005

Please Step Into My Office

A lifetime ago, July 22, I was so confident it wasn't cancer that I all but challenged my regular doctor to tell me what everyone was concerned about. I nearly fell out of the chair when she told me, and it was another day before I could say "cancer" out loud. The fact my doctor brought me to her office should have been a tip. NO ONE goes into a doctor's personal office complete with requisite library of books and degrees on the wall. Well, except on TV. And it's always bad news on TV. :)

I had my endoscopic ultrasound today. Or so they tell me. My anesthesiologist was great-- a very funny, personable guy, who fully knocked me out. No "you'll be awake but won't care" for me! The last thing I remember was that he put the sticky snaps on my chest meaning he was going to hook up a heart monitor. And then I was in recovery fighting through the anesthesia.

Dr. Thompson wanted to meet with me and my parents in his office (ALERT! ALERT!) but I went anyway. It was actually excellent news-- he does't think the cancer has moved to the lymph nodes, and doesn't think it's moved to any other organs or beyond the outer wall of the stomach. My mother heard a much more definitive "it didn't" but I was still working off the anesthesia so I'm not a reputable source here. :)

I did catch that he doesn't see the cancer in my esophagus-- and this had been a great concern to me. Knowing it's in the stomach is one thing, but there is a lot more to the esophagus than a way to get food down to our bellies. There's a valve which keeps stomach acid from ruining the lining of the esophagus, and... believe it or not, it maintains high pressure in the stomach where there is low pressure in our upper bodies (mainly the lungs). If part of my esophagus, including that valve, had to be removed it's not the end of the world, but it can't be replaced or re-created by doctors.

I have complete faith in Dr. Thompson, and only after the fact discovered he's both the Director of Endoscopy at Brigham & Women's and teaches at Harvard Medical School.

I can't believe the amazing, talented doctors I've had so far. I consider myself extremely lucky!

Monday, August 01, 2005

Surgeon Upgrade

I really like Dr. Vernon, but I've officially switched surgeons to Dr. Osteen.

Like Dr. Vernon, he is a gastric surgeon. Unlike Dr. Vernon, he is also an oncologist. Another difference is that she is basically just starting her career and not a whole lot older than I am. Dr. Osteen is winding his career down and is likely to retire soon. That's the doctor I want: the one who can't count his surgeries because there have been too many. Dr. Vernon is a wonderful, compassionate surgeon and Dr. Osteen is very stoic, but he is speaking of opening me up and "feeling" lymph nodes for cancer. It seems that Dr. Vernon was planning to do the surgery laproscopically (big word, I know, but strangely in my vocabulary now) where she could see but not touch.

Dr. Osteen made it clear very few patients have had cancer surgery via laproscope. That was enough information for me! Yeah, I'm not going to be a test case. Especially because they don't know yet how much of my stomach is coming out and whether they have to take part of my esophagus as well. Something looks funky with it, as in it's too narrow, but maybe it's just the way my body is. We're not made with cookie cutters, you know. :)

I learned some interesting things today:
* Cancer grows like a tree with "roots"
* It feeds on sugar (though likely something like "glucose" is the correct term)
* There is a test which checks for cancer using "radioactive sugar". Sweet (pun intended).
* Lymph nodes are filters

RE the radioactive sugar test: Dr. Osteen doesn't see this test, the "PET Scan", as necessary. He's not big on tests ("There aren't any true/false results"). They are only tools to help identify where the cancer is and how far reaching it is, but after the Endoscopic Ultrasound, which I have tomorrow morning, he's basically ready to go. I'm having this test with anesthesia because I refuse to go through what I went through on the 15th with the normal endoscopy and "numbing spray".

Because I've switched surgeons, my surgery date has changed to August 15. I learned I'll be in the hospital 7 days minimum, and they will try to release me any time after that, but may be in there 9 days.

After surgery I'll have a visiting nurse for some time. I assume this means there will be some horrible things that will need to be taken care of. Not just changing dressing on the wounds but I think there will be tubes left in for awhile to drain. And that's all I can say about that without feeling ill. YUCK.

The paperwork I was given says it will be 4 to 6 weeks after surgery before I'm feeling like myself again. I'm thinking it will be about this time I'll be able to eat normally again. I'm going to be living on "clear liquids" for a LONG time: Jello, apple juice, chicken broth... if you can't sorta see through it, I can't have it. Can you see through lobster rolls? :)

Insane Week

I meet with the senior surgeon today, have that fantastic endoscopy tomorrow and get my pretty, pretty CPAP (that's "Continuous Positive Airway Pressure") machine on thursday. I'm exhausted and the week hasn't even started yet.

I'm trying to do work again but it seems so petty. My boss has been amazing since I told him the news, and he's letting me do whatever I want to do. So far I've wanted to do nothing. But it's only been a week.

I'll have to rejoin society at some point....