Feeling Better!
I thought I was sick for a month but it was really only two weeks. I'm finally able to stop going in for fluids. Tomorrow will be the first time without an appointment!
I'm really doing much, much better.
I think I'll be nauseous for the next few years but it's not the chemo making me extra sick anymore. I have more energy and I'm even sleeping through the night most nights. It's been really great. :)
I'll meet with an oncologist on weds (mine is still on vacation!) and then I have the appointments for radiation thursday (for "films") but that's it for the week.
When I first walk into Dana Farber I head to the 11th floor because that's where all the Gastro-intestinal doctors are. I have to show my "blue card" to check in which they use to make a hospital bracelet. I'm handed a bunch of paperwork which I have to bring across the hall. Eventually I'm called to do "vitals". They weigh me, take my temperature, check my pulse, and take my blood pressure. Then I have to go back to the waiting room until a room opens up. They call me again and then I wait for my doctor (or nurse) to arrive. The great thing about this is that they will sit and talk to me for three hours if I need it. There is no feeling of being rushed like at a normal doctors office (where you know you only have 10 minutes of their time).
Each time I have chemo I have to go through the same thing, except once I'm called I have vitals checked and then I'm shown to my chair. I actually love it when they give me a hospital bed instead. The chairs are somewhat comfortable but the bed is so much better.
So November 7 my doctor will *finally* be back from vacation and I think I have the first appointment on his schedule. I'll have blood taken before I meet with him (they do this once a week to make sure my body is dealing with everything okay. If things were completely out of whack they'd either give me fluids, meds, or have to delay chemo). I'm getting my chemo pump after I see him. Chemotherapy drugs will be pumped into my body 24/7. I'd like to know how I'm supposed to shower with this thing, but I guess I'll figure it out. Each monday I meet with my doctor anyway, and that will be the day I get a new bag of chemicals. And later on monday I'll head to Brigham & Womens for my radiation.
Yipee!
Meeting the Gastroenterologist
Here's what the George Carlin page-per-day calendar says for today:
A meltdown sounds like fun. Like some kind of cheese sandwich.
I'm not having a meltdown, but I need to remember that for when I do.
Yesterday was a really great day. I was at Dana Farber most of the day but I did some Christmas shopping with my mom and ate lunch at
the Cheesecake Factory which is always a good time.
I learned more about my chemo treatment. I'll have chemo and radiation through Mid-December and will get another 5-day push in January... and another 5-day push in February. So by March-ish maybe I'll feel like a human being again. And I finally know the dates of things. They were keeping them from me like some sort of secret for whatever reason.
The best part of the day was meeting with the gastroenterologist.
Dr. Stoffel is wonderful, and made me realize I should have seen her a looooooonng time ago. But what did I know? She explained to me how my stomach is working now and why it is doing the things its doing.
Donna: "Why does it seem like they don't know how to handle her at the Farber?"
Dr. Stoffel: "No, they wouldn't know, this surgery is extremely uncommon."
Donna: "They couldn't figure out why she was so sick."
Dr. Stoffel: "It's completely understandable..."
When you think about it, imagine how few people have stomach cancer where surgery is possible. Very few. Most are terminal. And of those who can have surgery, most times the cancer is at the bottom of the stomach. More rare is on the side. Mine was the most rare by being at the top. In order to cut "within the margins" my esophagus had to go too. So it's almost like I had surgery for esophogeal cancer. Except even THOSE people get to keep their entire stomachs. It was nice to meet someone who was sympathetic and understanding. Yes, this does suck and it will suck going forward for some time. Once chemo is over I'll likely be able to find some kind of normalcy. And that's very promising.
And get this... She thinks I *NEED* a craftmatic adjustable bed. And we might be able to get INSURANCE to get it for me because she said she'll sign off. Prescription bed, I love it!!
I finally got hooked into a care coordinator (that took MONTHS!!) who's supposed to help me get into a stomach cancer support group if one exists (which I doubt), help find transportation, and really just help with whatever I think I need. I have been asking for a coordinator since I arrived at the hospital in early September!
Anyway, yesterday was such a great day I'm going to live vicariously through it for the next few days. Today hasn't been very good but I'm trying not to pay attention. :)
Another Good Day
Despite the fact we had a nor'easter today I had another "good day". No nausea, no diarrhea, no acid reflux, no cramping, and I only threw up twice. I feel normal today. NORMAL! Yesterday was crap, but that's water under the bridge.
Tomorrow is a crazy day.
I have one important appointment at Dana Farber at 8:45am (
oncologist) and an appointment at Brigham & Women's at 4:30pm (
gastroenterologist). Oh yeah.
I scheduled an infusion of fluids at 2:00 just to help fill the day. Who KNOWS what my mom and I are going to do from 9am-2pm. If I feel good enough maybe we'll head to the
Prudential Center. If I
look decent enough I may even stop off at work. :)
I learned today from my
radiation oncologist's resident (follow that?) that the November 3 appointment is a run-through which they're going to video-tape. I have lots of experience with cable access and was a broadcast journalism major in college so I'll have to try not to take over the production. "Okay, see this shadow? You need a scrim here. And did you white-balance?"
Apparently they will perform the procedure and do everything *except* radiate me. They'll get everything lined up and record settings, etc etc. It's mostly to make sure everything is checked, double-checked, triple-checked... My radiation actually starts on Monday, November 7.
I just read that
salt may contribute to heartburn. Doctors were surprised to learn salt was a problem and other foods (such as tea) really aren't bad after all. I could have told them about the tea--that
helps heartburn.
And I found this:
Aspiration (the reflux of liquid into the lungs, throat and voice box) is more likely to occur at night because that is when the processes (mechanisms) that protect against reflux are not active and the coughing reflex that protects the lungs also is not active.
So THAT is why I would wake up with reflux!!! That's exactly what was happening to me.
Joys of Dehydration
I wasn't feeling well last night about an hour into watching
Psycho. I was having a good time and wanted to watch the movie but was just restless and completely uncomfortable.
I sat on the floor. I walked around the dining room table for awhile. I contemplated going outside in the torrential downpour. I eventually settled behind the love seat on my knees peaking over the cushions.
And then I blacked out.
It was quick and I knew what was going on, and was able to fight it off, but I lost sight, hearing and strength momentarily. I promised I was okay, my mom quickly confirmed I didn't have a temperature and I insisted Dana Farber did not need to be called. Still, I was weak the rest of the night and woke up much the same way this morning.
My handwriting wasn't right this morning, unfamiliar to me. And I like to hand-make my cards when possible--it took me 3 hours to make two. I was slow and unsteady. Someone probably should have taken away my scissors.
It occurred to me about noon that I was dehydrated again.
I drink gatorade like I own the company. I have decaf tea. I have breakfast shakes. I have this problem where everything I eat goes right through me. Graphic, yes, but I'm being honest. I KNOW it's the chemo still doing it's lovely thing. But I don't eat enough as it is and then to have THIS issue on top of it is miserable. And I've found common meds push me to the other side of the spectrum, which is just as miserable.
I made some calls and was able to get an infusion on a Sunday afternoon. I use the word "infusion" like everyone knows what it means, but it's just a 5% dextrose and sodium chloride solution. Sugar and salt. Sweet and sour. Virgin Margarita. :)
My dad wouldn't sit in the chemo chair next to me even though we had a wing to ourselves. He looked really uncomfortable and per my mom their guest chairs ARE uncomfortable. Maybe it was too creepy? Anyway, they only had time to give me a liter but I definitely felt better. The fact I can type now definitely says it works. But then I started to feel sick on the drive home. Oh what NOW!??!
I don't get reflux much anymore (yay!) because the meds I'm on are working very well but I do actually throw up stomach acid sometimes. And that's all that happened when I got home so I forced myself to eat toast with peanut butter. How I loathe eating.
I'm pretty sure I'm going to need the every-other-day infusion next month when I'm going in for radiation. I don't see how I'll be doing *better* then, I might as well book the appointments now. I don't have a date yet for Chemo Part Deux but know that I go radioactive November 3.
I've asked my mom to sew up a cozy for my box of Sunshine Krispy Oyster Crackers because I'm afraid of injury from carrying the box from room to room to car... And I only have 1/4 of a box left! We MUST go to the store tomorrow.
Pity Party
My mother just went to bed as I was getting up. We're becoming weird people (well, more strange than usual). The dogs are exhausted ("Don't you people sleep?"). I kind of sleep whenever I want. I have very little energy which is upsetting because this is my "I feel good" time. I've got this on the calendar as chemo-free and time when I can do things and... my body is still reminding me it had poison pumped into it recently.
I had a little Jen pity-party this evening, and I'm glad only my mom had to attend.
I didn't fall apart or anything, but I had that realization that I have stuffed far, far back in my brain pop out again: I'm only 30 and should be out having fun like other 30 year olds. Having drinks with friends, laughing too loud, thinking about my career and where I'm headed in life. I'm on such a diverted path, and when I think about it it's very depressing. I just sit at the kitchen counter with my shoulders hunched down and my face resting on my wrist. And my mom just *knows* as moms do that something isn't right. And I have this position a lot now so it could be anything from tired to nausea to self-pity.
Basically, I woke up from my afternoon nap deciding my quality of life sucks. A shopping trip for me now means one store and I've got to take a nap right afterwards. I can't eat anything without it hurting. I've discovered I can't eat chocolate--at all. The steel shards in my stomach aren't worth it.
I can't even sleep normally. I'm up early now because I couldn't get my pillows right. I love getting clean sheets each week but it seriously disrupts the pillow barrier wall and ramp system that takes me days to construct. Too tall and I'm at a 45 degree angle, too low and I'll get reflux. I just gave up. I didn't go to bed tonight until 1:00am so I really just took a nap.
And I saw pink tic tacs in 7-11 this evening. That's right, breath mints to beat breast cancer. UGH. Why can't these companies
just donate the money? Why must they make it seem like they're actually going to track how many pink tic tac boxes were purchased?
Feeling okay?
Frankly, I don't even know how I feel anymore. I think my body is confused. I'm off the anti-nausea drugs and I cancelled my fluid-infusion for this morning. I'm scheduled for one on monday so I'll keep that appointment. I probably should go in because I feel dehydrated but I'm just so happy not to have to go into the hospital today. It's a pretty fall morning and I'm just enjoying the sun rays through the yellow leaves behind my parents house.
I think my acid reflux is finally under control. I'm still not sleeping up enough (and I should really take a picture of how "upright" I sleep in bed, you would laugh to imagine it isn't high enough. I think I might be gulping for air but then the old
CPAP machine would help with that if I dared to use it. EEEK! Just another thing to worry about. But I wake up at 2:30am feeling a little yucky, take some meds, listen to my "go to sleep" cd and then I'm fine until morning. No burning, no choking. It's really great. :) My stomach is upset but then it's been upset for 2 months so I'm starting to learn to ignore it. It's more annoying than my dog. WHAT? WHAT DO YOU WANT? WHAT IS YOUR PROBLEM! GO PLAY WITH YOUR SQUEEKY BRICK. My dog really does have a squeeky brick but I feel like I may have eaten a real brick. Very bizarre.
Anyway, I recently received some more charms for my bracelet (yay!) so I'll post pictures of them soon. Thanks again to all of you for your emails and cards and posts to this blog. I'm not so great at responding all the time and sometimes I'm just really late, but I love all the messages of hope and "keep at 'em". And Lisa, your response to "You shouldn't be sick" with "I shouldn't have cancer" was inspired. Love it, love it, and *used it*! :)
Pedicures
I went back to Dana Farber for fluids and an IV version of
Zofran today (great stuff, better than pill version because it's three times as strong, wheee!) but I'm hopeful I'll be able to cancel friday's appointment. I don't have much of a spine though so if my mother tells me to go, I'm going without a fight.
When I was in Dana Farber last week I saw two nuns, one in the chemo chair and one in the guest chair. I'm not sure why I thought maybe nuns don't get cancer, but it took me back a bit. These were not black-habit nuns either, they appeared more franciscan to me as they had natural fabrics in earth-like colors and their belts were hand-knotted ropes which swept the floor when they walked. They were in good spirits though the lady receiving chemo was either a bit forgetful or had a nice case of
chemobrain.
Anyway, it really gave me pause.
Speaking of drugs, I'm feeling sooooo much better. I even ventured out today to a non-hospital location! My mom and I got pedicures (mine was really, really needed and borderline embarrasing). Mom was telling the lady giving her a pedicure that no, she isn't working anymore because she's been taking care of her sick daughter. She described it very quickly, just left it at stomach cancer and said we were out today because it was a beautiful day and I was feeling okay. Maybe a half an hour later, a woman who had been there the whole time got up to leave, and she hoped that my mother didn't take it the wrong way, but felt my mom could use a little gift. And she paid for my mother's pedicure. I really think it took everything in my mom not to burst into tears. She was just barely holding it together. "How did you know?" "I could hear you telling Rose over there. You deserve it." Just a complete stranger doing an act of kindness for my mom. How very sweet! Thanks again whoever you are!
I try to do little things for my parents but it's tough being drugged up and unable to do the things I want to do. I've taken them out for breakfast and bought pizza and found a book my dad likes and a pretty ornament for my mom... I've gotten over my panic of "I'll never be able to repay X for Y." I look at it that I will definitely give along the line of my life, and when someone deserves to have a pedicure paid for, or a flat tire fixed, or whatever the case may be...that will be me picking up the check. :)
And yes, I was going to pay for my mom's pedicure. :)
(Note to Aunt Jo, I'm eating popcorn right now!)
Why are you sick? Oh yeah, chemo
"You shouldn't be this sick."
"Typically, patients aren't as sick as you are."
"We don't see patients this sick on the course you're on."
So what, I'm making it up?
Yes, everyone, I'm faking it! Isn't it funny? I'm not sick at all but to be convincing I even stopped eating and drinking. Wheee what a lark!
First, I've never written "what a lark" before, so I feel better for having gotten that out of the way. Second, I'm feeling much better now than I have for the past several days. Third, I'm eating again. Well, I'm starting to eat again.
My vision was blurry which explains the lack of posts. Sunday's came in on a wing and a prayer. I'd promised to do the "RCRL #2" and I was GOING to do it.
I felt okay on tuesday and wednesday, though wednesday night I was starting to feel crappy. By Friday I was sick and Saturday I was crying, so things went a bit downhill.
And when you feel that way, nauseous, vomiting, tired, scared, etc you just want to throw in the chemo towel. "DING, I'm out. It's been real folks, but this is beyond bearing."
What's worse? The old "you shouldn't be this sick." I AM this sick, so DEAL with it! I think I finally got the right drug mix yesterday. Hunger hit me after a cold sweat took all my energy away. It was like someone restarted the engine.
Anyway, I'm hesitant today, and I'm going to try very hard to eat and drink so I can cancel my otherwise scheduled 3+ hour fluids pump tomorrow. Fingers crossed.
Oh, here's my "drug list"...
Real Cancer, Real Lives #2
It's been a tough week for your host of Real Cancer, Real Lives #2. I didn't have any cancer symptoms in July- they found my stomach cancer by accident. Now I've had most of my stomach and part of my esophagus (the only part you really need, actually) removed and this week I began chemotherapy.
The first day was fine, which I describe in my post
So What's It Like? I haven't been able to eat much due to extreme nausea and because the medine I'm taking won't always stay down in my stomach. If it does stay it makes me very, very tired.
My chemo has been a five-day push with yesterday my last day for awhile. I wasn't doing very well on friday, however, and was actually crying yesterday. It's not pretty stuff, people. And while my chemo is fast, I've asked for meds to make the nausea go away and found I'm also very dehydrated since I can't eat or drink. That stuff takes time. Hours.
Anyway, I'm on the mend now which I hope to feel in a few days. I'm getting prepared for next month's chemo with 24-hour pump and daily radiation. Follow my posts right here at http://jennys-belly.blogspot.com.
Blogs By Cancer PatientsMinerva has written a specacular open letter to her cancer which patients, caregivers and friends alike should read. The post is called
To My Cancer and I encourage you to visit for some inspiration!
Lori has gotten her levels up high enough so she can re-start chemo but she'd really rather not. Please check out her post
No Rest for the Wicked to read about the frustration and complete exhaustion.
CancerBaby has learned a lot in her struggle with cancer, including how to order her doctors and nurses around to get what she needs. Her post
I'll Take Some Morphine and a Side of Ativan describes her week-long visit in the hospital for yet another painful obstruction due to ovarian cancer.
Blogs By CaregiversGregory created a loving tribute
for his wife Ann, which follows her very long struggle with ovarian cancer. She battled the disease on-again and off-again from 1972 through 2000. It is written very matter-of-factly with much to think about from both patient and caregiver perspective as well as the medical community.
Medical BlogsCary has located some excellent news which indicates that low fat diets decrease the risk of recurrence for breast cancer patients. His post
Beating Breast Cancer: Increasing the Odds incidates that walking a little bit more and a little faster may help your odds of beating the disease.
Dan at
nospeedbumps.com has given us all something to think about with his post
Texas Judge Orders Chemo for Girl with Cancer. Dan is surprised at the 13 year old girl's parents decision not to seek treatment for her primarily because his own daughter was treated for Hodgkins and is doing well.
Real Cancer, Real Lives Needs You!If you would like to submit a post for inclusion in
Real Cancer, Real Lives, please do so via the
Carnival Submit Form. When submitting your blog entry, be sure that Real Cancer, Real Lives is selected in the menu space provided. If you are interested in hosting the carnival, you can check available dates at the
Real Cancer, Real Lives main page...just drop an
email to Cary at
Cancer NewsWatch to let him know which date you'd like.
I hope you enjoyed this second edition of Real Cancer, Real Lives! Next week's edition will be held at
Procrasti-Nate.com on October 23rd, so don't forget to drop in!
Previous Editions of Real Cancer, Real LivesReal Cancer, Real Lives #1 can be found at
Cancer News WatchReal Cancer, Real Lives #2 can be found at
Jenny's Belly
Pears and Daisies
Nausea? Complete exhaustion? Adversion to even common smells? Negative appetite? Other unpleasant side effects? Check plus!! The one I didn't figure on is why I'm throwing up. They told me that I was unlikely to have
any side effects, and vomiting isn't even on the LIST. I'm now wearing sea-sickness-prevention bands on my wrists which my aunt El gave me. Hey, I'm willing to try almost anything.
I can't get over how the
compazine affects me. I feel pretty good when I wake up. I take the pill--to help prevent nausea--just before I leave for the hospital and I feel fine all through the procedure. On the drive home, however, I am OUT like a light. It's only an hour commute and each of the past three days I've fallen asleep.
Frankly, I'm amazed how fast EVERYTHING has hit me. I'm on the "easier" path for the study I signed up for and I can't imagine how violently ill I'd be if I'd been selected for the more difficult path. It's incapacitating. I sleep all day, and when I'm awake I feel crappy. I'm looking forward to having the bag/pump chemo next month because it must be much, much lighter than what I'm on now. A reprieve!
I have tripled my already brimming respect for people who work while undergoing chemotherapy. I know it wouldn't be a matter of work being a "good distraction" for me. It would be completely impossible. I was talking to my mom about how it could be possible for some people to work, and she reminded me that each patient reacts differently. "Comparing two chemo patients is like comparing pears and daisies." My mom can be very funny. :)
I'm trying to keep the IV site dry, which is impossible because the port-a-cath incision site has chosen this week to start draining. Nice! At least it doesn't hurt. I'm very thankful that with all of my side effects there isn't pain like I had after surgery.
Oh, here is what my IV looks like with the dressing on it...
Really, it doesn't hurt. It's just bulky and a nuisance. (Do you like my yellow jammies? :) )
So on the nana update, she's home now. We're all kind of confused as to why, but it was definitely her doctor's decision. She didn't have a stress test or an angioplasty or anything else. She went from ICU to the car. No middle ground. I'm glad she's happy though, she's just thrilled to be home!
As for me, three down, two to go! And I'm free of the IV on saturday. (Tina, you might have to prop my head up for our card-making class!)
Sleepy Girl
So tired... zzzzz. :)
I took a nice nap this afternoon but I'm still pretty tired. I wouldn't say I'm nauseous, more like a "blah" feeling.
It took 2 hours today for them to give me the chemo, which again takes only 10 minutes. My nurse is out and the replacement couldn't find my med order and excuse, excuse, excuse. I was only impatient because I wanted to get home and go to sleep! :)
They're keeping my grandmother another night at least, it seems they've identified some kind of blockage.
So What's It Like?
I met with my oncologist first thing this morning, which won't be the usual protocol. We talked again about the CT scan and how the guy goofed reading it, and how the endoscopy results came back looking good. He did a mini physical and gave me more prescriptions (ye-haw!). One is to help with any chemo-related nausea and one is for the possible (ugh) fungus in my stomach as seen by the endoscopy biopsies. If this med doesn't work (and I doubt it will) he's going to hook me up with a
gastroenterologist. And I have to go back to see my surgeon, Dr. Osteen, but right now he's bicycling in France. I laughed out loud when Dr. Bhargava told me that. I can picture MYSELF bicycling in France right NOW more than I can
Dr. Osteen. But I digress...
I met with the study nurse for a few moments, really just so we could iron out my future appointments. I was warned that it was a "ZOO" in the infusion lab.
I was sent down to check in for chemotherapy at about 11:00.
At noon they called me to have blood drawn. Since I have a port-a-cath, I knew they were going to jab me in the chest and not the arm. The area is still sore so I was trying not to be a wreck about it. My chemo nurse, Christin, noted that I still have fluid due to general muscle trauma, but I was glad since she was extra cautious. She sprayed my shoulder with
lidocaine to numb the area and put an IV in. In fact, it's still in. Rather uncomfortable if I do say so.
After taking blood I was sent back to wait for my timeslot. The floor was so full of people you'd think they were giving something GOOD away. The waiting room was overflowing and people were standing beyond the check-in area into the elevator banks. INSANE. They didn't come to get me until 2:00pm.
I followed an aide past rows and rows of people in cushy teal blue 'pleather' chairs which could recline into a bed. Nearly everyone had mauve blankets across their laps as if they had been there for days.
The floor is set up a lot like a hospital unit with privacy curtains which can be drawn across, and two bed-chairs to a side, but it's much more compact than a hospital room and not separated into traditional "rooms" but rather "pods" with walls but no doors.
I was seated in my designated chair and waited nervously for Christin to arrive. She spoke to me for a few minutes about how long the procedure would be, chatted with my mother, and disappeared with a "I'll go get your meds" just as my nutritionist Tara arrived. I was able to tell Tara I'd done slightly better with the new meds and was trying to stay away from the things she told me to avoid.
Christin returned with a blue smock over her white jacket as though she was preparing for surgery. This was unexpected and a bit frightening, but I could see she wasn't carrying much. She drew some more blood then connected me to a saline drip. The blood draw doesn't hurt but the saline DOES since it's literally adding salt to a wound.
Most people had chemotherapy meds in IV bags on a drip like my saline. But my chemo meds were in syringes. I only get a little bit since I'm going to get it for 5 days straight. It was actually very quick and we were out of the hospital by 3:00pm.
I mentioned I still have the IV in, which makes sense-- tomorrow they can just hook me back up again without having to jab me. All I can think of is the scene in Pulp Fiction when John Travolta has to jab Uma Thurman in the chest with a needle to re-start her heart. It wasn't that violent (obviously) but it's really my primary thought.
Anyway, I return for chemo every morning tomorrow through saturday and then I'm finished for 3 weeks. I'll just go in on monday mornings to meet with Nina (Dr. Bharvaga's nurse) who will make sure my fluids, blood counts, etc are okay and that I'm coping well with everything.
I think Jeanette mentioned in a comment on my prior post that it's almost like the chemo and radiation are set up to destroy your body and YOU have to be STRONGER than it is. I really feel that this is true. I'm sure the chemo is killing all kinds of stuff inside me already, and not all of it is bad. Or at best, almost none of it is bad. Lots of good cells are being knocked off as innocent bystanders, but nutrition, rest, and a positive outlook will help build me back up again! :)
Nana Update: I visited her today as part of my grand hospital tour. She is doing well- her heartbeat has been stabilized, as has her blood pressure. They are talking about giving her a stress test tomorrow and letting her go home if she passes. I just hope the stress test she takes is different from the ones I've done (running on a treadmill... my grandmother is 81!) :)
Chemo Starts Tomorrow
Twelve hours from now I'll be in the Dana Farber Cancer Institute for the first chemotherapy treatment of my life. Am I nervous? Surprisingly not as much as you'd think. I'm ready for it to start.
When all your energy is focused on one thing and you've put in weeks of testing and interviews and various bodily tortures you're ready. :)
I'm not completely sure what to expect, but I will meet with my oncologist, Dr. Bhargava before I get the chemo. I think he'll even bring me down to the treatment floor. I wish I'd been able to see the space before I'll be in it. I should have stopped at the floor at earlier visits, but I never thought of it before now. Oh well!
Anyway, here are some charms already attached to the bracelet:
--> from cousin Susan, a "prayer box" which she gave me when she first heard about the cancer. It didn't occur to me until recently that I should add it to the bracelet! I'd never heard of a prayer box before, but the idea is that you put your troubles inside and then they're in God's safekeeping. :)
--> from cousin Amy, a four leaf clover. Doesn't it look real? I wonder if it is... Amy said her husband carries one with him, and now I'll be able to do the same!
--> from cousin Kathy, a wine glass with red garnet as the wine. It should be an empty wine glass, because I had WAY too much fun in the tasting class we took a few years ago. If the wine was good I, um, didn't waste it. hehehe
I'm so glad I'll be able to wear the bracelet tomorrow. The jeweler did a nice job putting them all on. He changed the rings on many of them so they won't pull apart after wear.
Here are some to be added to the bracelet later:
--> from my grandmother, a madonna. My grandfather told me this evening that this is a charm my nana had as a child. How fantastic is that?! This picture doesn't do it justice...
--> from my grandfather, a sailboat. I think he would tell you that sailing was his life. I remember him on that boat all the time! I wonder if my younger cousins remember it too...
--> from me, a snoopy charm. Hehehe. And only because they don't make one for Lucy. :)
A quick FYI for my family: please know she is doing well, but my grandmother is in the hospital right now. She woke up with some pains in her neck (sometimes a warning sign before a heart attack) and she spent the day in the emergency room as doctors tried to stabilize her blood pressure and wildly fluctuating heartbeat. She was mad (why do I have to be here, what are all these stupid wires for, why can't I go home since I feel fine, etc) the entire time, so you know she feels okay. :)
She is in ICU which is good because that means they're watching her closely. I hope they decide to put a pacemaker in because I think it would make her feel so much better.
I'll update news on my nana and my chemo tomorrow. Thanks for all of your prayers!
Good Days Happen
I had a GOOD day today and thought I should mention that they occasionally do happen!
I woke up with very slight acid reflux, but it didn't wake ME up as usual. I had only a mild belly-ache from food but there were no dashes to the ladies room. I took a nap this afternoon and woke up feeling refreshed. I had a nice dinner which my mom cooked, and actually sat at the kitchen table with my parents. I ate chicken and spinach like an adult, instead of the ridiculous soup soup soup oatmeal eggs soup eggs eggs oatmeal routine I have been following. (This routine assumes crackers and gatorade.)
The port-a-cath site looks really good now. The antibiotic cleared up all the redness, swelling and blistering (ugh) and while it aches a bit I know they'll be able to use it on tuesday for chemo.
I went to a "midnight madness sale" at a craft store I love (sale ended at 9pm, go figure) and I even found my beloved
Steely Dan cd I've been trying to find for what seems like years. I'd buried it along with cds I don't listen to much anymore. I'm just glad to have it again. Yay!
Living with my parents again is somewhat bizarre but I love to go "condo shopping". I go to my condo and wander around looking for things I want to bring to the house. A candle, some best-of saturday night live dvds, some body spray, sparkly nail polish, a far side book... it really feels like shopping, but I'm picking from things I already own. :)
Anyway, I just thought it would be nice to put up something like
"I feel pretty good today... almost normal!" Haven't seen that for awhile, have you!! :)
Some Advice
I wouldn't know what to say if any of my friends or family dropped a bomb like "I have cancer" the way I did. I found a neat site which might help if you're
not sure what to say to me.
There are some people who have seemingly fallen off the face of the earth. I'm not sure why, except maybe because they don't know how to talk to me anymore. I hope by reading my blog you're able to see that I'm basically the same as always. I still have my crazy sense of humor though it almost never comes across in THIS forum.
I've said to a lot of people that there is no WRONG thing you can say to me, but actually there are some things. I don't want to speak for other cancer patients/survivors but these are really my only two pointers.
--> The old "you'll be fine" is too dismissive. It quite possibly is the equivalent of saying "you can have another" to a woman who has miscarried a baby.
--> Don't do the sad face with head tilt (aka "the pity look"). It will ruin anything even remotely compassionate you have to say.
You shouldn't have to tip-toe around cancer patients. We're actually stronger than we were before the cancer diagnosis. I might be able to take on the world once I get the reflux under control. :)
I established from day ONE that there would be no whispering about me behind my back. That was the deal with getting full-disclosure. So the thing to do is just ask questions if you have any, and don't worry about saying something wrong.
Love/Hate Food
Reflux woke me up this morning. ARRRGHGHGHGH!!!
It's been almost two months since they cut out my stomach and got rid of that flap in my esophagus that kept things I eat in my stomach. I *still* haven't figured out how to stop the acid reflux. Worse, when it wakes me up, it's because the acid has moved into my lungs. DISGUSTING! And no one can seem to stop it. I'm on two different meds for it and they're helping but about 75% accurate.
I can't tell you how depressing it is.
If you've been following my blog you've seen this "I have reflux" post a billion times. But it's torture, I can't stop myself from writing about it. I'm going to ask my oncologist if he can up the prescription from 6 to 4 hours, or maybe let me take more than 2 teaspoons at a time.
I had no cancer symptoms few months ago. Not even a wee bit of heartburn. And now I can't eat certain foods because they'll turn my 1/4 belly inside out and I should eat things I don't like, such as beans. YUCK. I mean, as soon as I'm told I shouldn't eat tomato things, that's all I want. Tomato soup? Salsa? Spaghetti? Yes, please! Oh wait, no. I guess not. Sigh.
To avoid reflux, I'm supposed to stay away from chocolate, citrus, onions, garlic, peppers... basically anything which gives anything else any flavor. :) hehehe. And heading into chemo I should eat more peanut butter, cheese, fish, oh-- here's my favorite: there's a carnation instant breakfast "HIGH CALORIE" version which can only be specially ordered by nutritionists which I'm supposed to have. And I'm supposed to choose "regular" over "reduced fat" things. How funny! It seems unnatural.
Cancer Discrimination
So Elizabeth Hurley is in town for Estee Lauder in support of breast cancer awareness. She helped raise some money and they lit the Prudential Center in pink lights.
My mother was appalled with the dress Ms. Hurley wore, but I explained that she's a model and has to look glamourous at all of her appearances. Mom thought the breasts-falling-out-of-the-dress look kind of mocked all the women who have had to undergo mastectomies.
She's definitely got a point.
Slinky in pink, Liz shines star power on cancer research
By Inside Track
Friday, October 7, 2005
Supermodel Elizabeth Hurley was in the pink all over Boston yesterday spreading the good news about breast cancer research on behalf of Estee Lauder.
Last night, lovely Liz wrapped up her all-day pink-a-thon at the haute ``Hot Pink'' dinner at the fab Four Seasons. More than $250,000 was raised at the benefit for Evelyn Lauder's Breast Cancer Research Foundation.
Liz arrived at the glam gala, resplendent in a pinkish-blue dress by British designer Jenny Packham, after she and the cosmetics queen flipped the switch to illuminate the Prudential Tower in a pink glow in honor of Breast Cancer Awareness Month. The hotel also had a pink hue last night.
The duo are on a pink-building crusade all over the world to spread their message. And Hurley said she won't rest until the Taj Mahal is lit up with pink lights!
``I think it's a feeling of solidarity with women who have breast cancer,'' said Liz, whose grandmum died of the disease in 1992. ``It's telling people not to whisper the word, `cancer.''
And tomorrow, Logan is getting a
pink plane.
Really. How cool is that? :)
But is it wrong for me to be a bit upset that breast cancer gets all the cover stories? I don't want there to be less attention, but I wish there was acknowledgement that there are other cancers out there. Prostate cancer has absolutely nothing like it, but then not too many men would be buying ribbon charm bracelets and scarves.
What's bothered me most, is that there are organizations which only support breast cancer research and patients. Such as a local one which helps patients get to their hospital appointments-- but only if you are being treated for breast cancer. Why the discrimination?
Ugh, don't listen to me, I've felt crappy today and I'm probably sounding like a selfish bitch. And forget what I said earlier about a day trip tomorrow--no way am I going anywhere!
Better Days Ahead
I had a bad day today, but accept that it can happen from time to time. It's 5:36 and I'm still wearing my jammies. I think I may have lost 5 pounds, just since noon.
And its times like this I can't imagine what it will be like to add chemo. I took a nap and reflux woke me up. I have to take that suspension crap a bit more than every 6 hours. It's about the 5th hour my reflux says "remember me?" But then I had some pretzels for lunch. I think the salt makes things worse.
I haven't been out of bed much today, but I hope to take a day trip with my mom tomorrow to the
Yankee Candle flagship store. To anyone who hasn't been there it's really not a day trip to look at candles. The building includes a home and gourmet store, a christmas store, 2 restaurants and a cafe... Anyway, it's something my mom and I have done every year for quite a long time. It's our kick-off for the upcoming holidays. I hope to feel well enough to go! :)
You've Been Rescheduled!
Rescheduled. Surprised? Not me! :)
So chemo is starting on TUESDAY now instead of Friday. I spoke to my oncologist, Dr. Bhargava this afternoon, and he said it was because when they informed radiation of the start date it caused a problem. I guess whatever schedule I have for chemo is the same for radiation and they don't work on Sundays.
My doctor said they even got special permission from the head of the study for me to go Tuesday through Saturday. Not sure why that needed special permission, but there you have it.
And I got the biopsy results (finally!!) which shows everything is okay. Yet on the other hand my esophagus is extremely inflamed (no kidding) and it looks like I have an ulcer a-brewin'. And I heard him mention the word "fungus" in relation to my stomach, but I'm going to pretend I didn't hear that. The suspension stuff is what they prescribe for ulcers anyway so hopefully I'm on my way to being healed. The ulcer would explain why I thought I was going to die when I had some chocolate today.
I have to take pictures of my three newest charms, from cousin Amy, cousin Kathy, and cousin Susan (not a new one, but I just realized I can add it to the bracelet!). I'll put them up here later on.
So again, chemo starts Tuesday NOT Friday. I've got the weekend free again. Yay! :)
You've Been Randomized!
I just got a call from Dana Farber and my chemotherapy starts on friday.
They still haven't told me about the biopsy results, but obviously things are okay since they're going forward. I put in a "Ummm, Hello??" call to my doctor.
So here we go with phase one of five.
I was randomized (no one has ever told me that before!) into the chemotherapy study's standard treatment. Meaning I won't be as sick as the other treatment option and my hair will only thin a bit. I will start treatment on friday and go for 5 consecutive days. Fri, Sat, Sun, Mon, and Tues. After that I will have to meet with my doctor once a week, but I don't think I'll be given any further drugs until phase two next month. I might be wrong about that, but that's how it seems so far.
I'm just glad to finally KNOW a bit more about what's going to happen to my body! It's been frustrating to know I'll be getting crap pumped into my chest soon but not know how much or when. What a relief to know!!
Mmm, Slurry
I don't have an update.
Nothing.
I didn't hear from Dana Farber or Brigham & Womens today so I have no news on the biopsy or the chemo start date.
But I have to report that the "suspension" stuff for acid reflux has worked really well so far. I woke up at 4am with reflux but it didn't hurt at ALL for the first time. If it only wakes me up, who cares! I'm thrilled. :) And I think it only woke me up because the medicine had worn off (6 hours had passed).
Miracles happen!
Drugs and Tea
So I picked up three new prescriptions for my medicine basket. Some more oxycodone, an antibiotic, and something the nurse called a slurry (which has negative connotations for me, but I hear is good stuff).
My arm is still bothering me so I got a refill on the oxycodone. The port-a-cath site is getting infected because I had an allergic reaction to the clear cellophane crap hospitals use sometimes so they don't waste a band-aid. And then the slurry, or "Carafate suspension", is to help with the acid reflux. It truly is a suspension though because I can see it separating in the bottle like a trifle. I hope it tastes like a trifle.
Stupid reflux woke me up coughing this morning. Then my coughing woke up my mother. After the reflux and coughing went away, she and I split a raisin scone my aunt Karen picked up at a bakery yesterday. Yummy. :)
I had a pretty easy day at Dana Farber today. I met with Dr. Bhargava's nurse, Nina. STILL no news from the biopsy done last week. See, in order to start the chemo study I've signed up for, the cancer has to be gone. This study is to see what drugs best lead to a cure after surgery cuts it all out. If I have cancer still I'll have to get different treatment. Either way, I'm going to be okay because I'll get what is best for me.
I also met with Tara, my nutritionist. She is the first nutritionist I've met who is actually down to earth. She didn't even try to give me the old "balanced diet" stuff I've heard a billion times. I learned from Nina that I'm on my way back to anemia, and was able to tell Tara so it's on her radar. I guess my hemoglobin counts should be between 12 and 16 and I'm at 11. Not really low, but something they have to watch, especially since I haven't even STARTED chemo yet. It explains part of why I'm so tired. But I'm also not using the cpap machine for my sleep apnea (doctors orders) so that will add to my sleepiness too. zzzz
ANYWAY, Tara said I can ignore the special diet for cancer patients and ignore the special diet for celiacs and ignore the special diet for people with little stomachs, etc etc. I can just focus on eating proteins (mom was right!) and avoiding foods likely to give me reflux. But then tea is on that list and I'm living on tea. She said hey, then stick with what's working. Isn't she great? She was glad I came to her early, before I'm feeling sick. Most people ask to see her when they're losing 10 pounds a week. Which sounds great, but if you're losing that much a week, you are S-I-C-K.
Speaking of which, I've seen lots of people with cancer in the past few months (obviously) but I saw the first one today who was younger than I am and looked like she probably won't make it. She was too thin, FORCING herself to cough to the point of gagging, and had deep, sunken eyes. She looked absolutely terrible. I was kind of frightened of her, which was an embarrassing reaction to have. But I think it was her cough that put me off, not the way she looked. I'm the queen of deep-lung "I wish I could stop because this is scaring people" coughs (I've had bronchitis a billion times) and know well that she was making herself cough. I just don't know why. Maybe it felt better?
I'm guessing chemo will start next Monday. Once I know which chemo mix I'll be getting I know I'll feel better. The uncertainty of it is making me really anxious. Just ask my mom. :)
I'm going to drop off my bracelet at the jeweler tomorrow so the charms can be attached. I know there are still some on their way and do plan to bring the bracelet back to the jeweler later.
Oh, my tea favorites (and therefore recommendations) are
Constant Comment (regular and decaf),
Courtship,
Orange Spice,
Lady Londonderry, and
Buckingham Palace Garden Party.
My Charms
I bought myself 3 charms (what, I can't?) for my bracelet.
First, a crown, because there was a time when I was convinced I would have made an excellent duchess. My odds are decreasing, but nothing is impossible.
Then a girl doing the "I'm a little teapot" song. She looks a bit more like she's doing the egyptian walk, doesn't she? The point of the "I'm a little teapot" charm is that after surgery, and even somewhat regularly now, I will walk around with my left hand holding onto my side just about the ribcage. This is because the chest tube site still hurts and pressure makes it feel better. In fact, I was shopping with my friend Tina today and she pointed out that I was doing it. I don't even NOTICE it anymore. ANYWAY, when my mom or aunt Jo would ask me if my side was hurting, I would say no, I'm just getting ready to perform "I'm a little teapot" and this is my handle. When I saw the charm, well... a purchase had to be made.
Last, three common good luck symbols. Horseshoe, 4-leaf clover, wishbone. I'll take all I can get! I thought it was really cool.
I feel okay today. I woke up with an acid reflux attack, drank my
hot tea and felt better (tea is a miracle-worker for heartburn and reflux, try it sometime!). I had a morning nap and now it's time for my afternoon nap. I'm like a child and get cranky if I go too long without my rest. Plus, its the only way to heal.
I'm going to put on the hideous sparkly monkey sleep mask that Lisa gave me (grrrr) and head for the pillows!! :)
I think I'll be nauseous for the next few years but it's not the chemo making me extra sick anymore. I have more energy and I'm even sleeping through the night most nights. It's been really great. :)
