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.)
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!!!
:)
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
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!!! :)
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...
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...
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.
One Month
It's been ONE month since my cancer diagnosis! (damn, that was a long month)
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.
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.
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. :)
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!
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.]
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.]
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!
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....
