Color Me Jen
I went to the hospital today for CT scan #4. Before my appointment, my radiologist Dr. Mamon came to meet with me and discuss the results of CT scan #3. It turns out that the radiologist who reviewed CT scan #3 was not familiar with how a stomach looks when 3/4 of it is GONE. So he raised a lot of red flags. My doctors have all reviewed by themselves and with several other senior radiologists, including the senior-most radiologist at Brigham.
All agree that things look okay, and there's only a 5% (or so) chance that the cancer has returned. Because of this I still have to wait for the biopsies to come back (likely by Monday) in order to proceed with the chemo. So I'm delayed for Monday. I'll still be going into the Dana Farber for other morning appointments, but it won't be to start the chemical cocktail. I should instead learn at some point next week what the story is.
In the meantime, todays appointment was for radiology and their physicists. They have to figure out angles of beams of light and blah blah blah Number-crunchers are cool :). There were three ladies, each with a different color marker, having a field day with my chest.
They got rid of most of the black and blue pen but the red wouldn't come off. In truth, you know I've just been looking for an excuse to show my wrecked stomach. Hehehe. (This is seriously only half of my scar. Scary, huh?)
And I got my tattoos today. Five of them. It hurt like a biopsy, or the way it felt when the "stuck" staples were removed. Those people who say the tattoo pen feels like a needle prick are dirty, dirty liars.
Cranky Girl
I'm up early with acid reflux and looking for something to read... the kitchen counter has been cleared off except for a postcard and a letter, just some junk mail sent to my mother. I couldn't resist reading the postcard.
First, it's the crappiest thing I've ever seen. The creator had clearly just learned how to use bold type and "word art" in Microsoft word. It starts with "NEREIG has become...AREI-WIN". Oh yes, that's a *much* catchier acronym. Good work.
They're apparently trying to get real estate agents to sign up for their miserable one-day seminar. I know this only because there's a tiny cartoon of a house with a dollar sign price tag hanging off of it, and on either side of the picture is the text "Don't lose" and "Don't miss this!!!". I can't put my finger on it, but there's something amazingly professional about those three exclaimation points. What's more convincing? A paragraph full of bad grammar and elipses (...):
Don't be fooled by imitators...learn from the best, other courses in this area have been developed after the principles have taken this course...don't get the watered down version...get it straight from the source!
That's right. Principles. This and more crummy text is crushed into a box which starts to fall right off the card.
The little postcard is so cluttered it took me quite a long time to even notice the title: "Winning with Real Estate Foreclosures". They got all carried away trying to convince me not to go to those other courses (??) that they forgot to tell me the name of the dumb thing. I'm guessing my mother is not a AREI-WIN member, though there is a "special price for this seminar of $395.00 discounts for AREI-WIN members!" Discounts? And is it $395.00 off or what?
You think I'm cranky now, wait until chemo starts monday. :P
My Left Shoulder
I drove again, but this time it was just a lawn mower. It hurt so I didn't do the whole lawn. It's kind of nice to do something productive in a day otherwise filled with naps. That's right--plural. Naps.
I took the gauze off my port-a-cath site and it looks okay though my shoulder and arm are still
really sore.
The blood at the bottom (just under the skin) is because they drew blood to make sure they had put the thing in correctly. Hopefully it won't leave that kind of mark each time they use it. The white stuff is just a few steri-strips which will probably fall off next week. I'd personally prefer something a bit more sturdy like stitches but they didn't ask me. :)
I've got a dentist appointment tomorrow (great!) and then friday is the CT scan. I'm going to call Dana Farber to find out if they have any idea what my chemo medicine mix is going to be. If they had to delay putting me in the "decision-making computer" because of my inconclusive CT scan from last week I probably won't start chemo on monday.
ARGHHH the port-a-cath site is ITCHY!!!!
Up Next: CT Scan #4
Ready for this one? I have a fat lip. I'm pretty sure my anethesiologist tried to punch me awake. He arrived late and then tried to convince me I probably didn't need him. I've been through enough B.S. that I nearly gave HIM a fat lip. "Start putting me to sleep, senator!"
I had no problem with the endoscopy today, just it was looong. I was there at 9:30 and didn't leave until about 2:30. The worst part was actually getting there. As I'm back on Oxycodone and it feels like someone shot or stabbed me in the chest I didn't plan on driving to the hospital this morning. But I had to-- my poor mother took a sleeping pill last night and was still dealing with the side effects when it was time to leave.
So the first half of the trip had her shaking her head and slapping her face to stay awake, and then I drove with a pillow under the seatbelt (ow, my port-a-cath is RIGHT under where the seatbelt shoulder strap goes!) and very little care for danger. Hey, I might have been drugged up, but I was driving like everyone else in Boston rush-hour traffic!
There were lots of accidents this morning but I promise we were neither in any nor the cause of any. And my mother won't be taking the sleeping pill again when we have to get up and go to the hospital!
I have to wait a week for the pathology results to come back. The doctor said he did a few biopsies but if he had to
guess he would say it was nothing to be worried about. Wow, what can I do with THAT unhelpful information? I also went up to my surgeon's office to ask for an appointment since my side still hurts from the stomach surgery. Dr. Osteen is gone for 2 weeks so I'm hoping the doctor backing him up will find some time to see me.
I have nothing to do tomorrow and I'm absolutely thrilled. These past two days have been something else! I'm still scheduled to start chemotherapy on monday and this friday I have a CT scan (yes, another one!) in preparation for radiology.
Oh, back to the fat lip-- I think it's because of the endoscope. The doctor likely (accidentally) pinched me. Or he maybe did a biopsy of my lip for the hell of it. Or maybe he punched me in the face instead of the anesthesiologist! Anyway, a fat lip is the least of my worries. :)
Owwee
I can't figure out how I'm going to get to sleep. I was lying in my bed for an hour, and I'm really tired. But suddenly everything is itchy (and I can't reach anything without pain) and I'm twitching and generally can't stop moving. Itchy ear, foot, back, arm... ARRGHGHHG!!
It's like someone gave me a cup of coffee, wrapped me in wool and sent me to bed. :)
I decided to have the port thingy put in on the left side because the left side ALREADY hurt, I figured I might as well leave the right side to sleep on! I was lying there on my side with a fluffy pillow on my hip and my arm on the pillow. The situation might be fine if I could just STOP MOVING. The pain from moving is reminiscent of the good ole chest tube (since muscle and tendons were disturbed).
Anyway, it'll all be okay soon. Tomorrow night will be a little better and by the end of the week I'll probably be able to sleep without the arm-prop pillow. Baby steps! :)
Charming 2
Some more of my lovely silver charms!
--> From cousin Todd a firetruck, most appropriate as he is a fireman!
--> From the Hourihan family a lighthouse from cape cod, one of my favorite places to visit.
--> From Aunt Jeanne an adorable wishing well.
--> From cousin Jon and fiancee Lynse a german shepherd (my favorite breed, though I love all dogs)
--> From cousin Ali an ice skate-- she has skated for as long as I remember and is top-rated in women's hockey at Trinity college!
--> From Uncle Bob a wrench and... yes, that's a toilet. He had me in stitches last week telling stories of broken toilets (had to be there)!
--> From cousin Joe a commercial jet. He's already a pilot but plans own an airline one day--you heard that here first. :)
--> From Uncle Bob and Aunt Jeanne, the chinese symbol for "long life". Yes, please!
Thanks to everyone, I love them VERY much!! :)
Back from Surgery
"Are you right- or left-handed?" the check-in nurse lady asks me. And I get it now. My hospital ID band is now on my right wrist guaranteeing that I'll never be able to take the damn thing off. I have to CUT it off but I can't because I need my right hand to work the right-handed scissors... GREAT! I'll just leave it, that way I don't have to get a new one tomorrow. :)
I'm back from the surgery (obviously) and doing okay. I'm on hard drugs again (whee!) and completely exhausted but otherwise feel like perhaps I tried to lift a small house with just my left arm. Like a muscle pull or strain. I don't care to know how it feels without being medicated, though!
The anesthesiologist said he'd put me into a "who cares what's going on" state and I asked to be knocked out. He said he talked to me in the middle of surgery to see how I was doing, and I said "Well, I'd like to be more asleep." What a smart ass. :)
I have a gauze pad over the incision but it's quite small. Less than 2 inches long and on my shoulder exactly where my arm connects to my body. The cool thing is that they will use this port thing to give me drugs but also to take blood. No more sticking me in the arms! Um, except probably tomorrow when I have the endoscopy.
Can I just say how annoying model Naomi Campbell is? I just want to get that off my chest. Hateful woman.
I wasn't even nervous for this surgery, nor am I worried about tomorrow. And remember what I said about leaving my dignity at the door? They pulled my hospital gown down to my stomach scar while I was still awake. And I'm in a room full of men and women who I've never met.. And I didn't even care. Granted, I'd had lots of drugs by then *and* it was a hospital setting (it wasn't exactly Chili's or TGI Fridays) but STILL!
I'm supposed to make a quiche for myself for dinner and just don't have the energy. I want to go lie down but feel bad that my mother already does so much for me. Maybe I'll just start the thing so she can tell I put some effort into it. Here's hoping I don't put sugar or dog food in it! :)
Night Before Surgery (again!)
As soon as you tell me I can't eat anything after midnight, all I can think about is eating. I'm watching the clock like I'm taking a timed test: "Oh no, only an hour left!!" I'm actually not hungry (as usual) but afraid I'll have reflux in the morning as a result of an empty stomach... so I'm enjoying a bit of salad and my beloved oyster crackers.
So it's official... I've moved back to my parents house. Sure, I've slept here every night since the cancer diagnosis in late-July, but I didn't really LIVE here. Well, my box-spring and mattress arrived today. My dad, a neighbor and my brother's best friend moved them from my condo. And they set it in my old room instead of Jeff's room (Yay! The paint I picked out! The light fixtures I picked out! The view I picked out!). I miss having my actual BED though (it's a canopy and I love it). It's going to be weird to sleep in my own bed after soooooo long, though. I probably won't sleep well. :)
I can't eat after midnight because I'm having the port-a-cath put in tomorrow morning at 11am. I have to be at the hospital at 9:30 but if day surgery works like inpatient surgery I won't wait around much. A lot of the time is for me to change and get all comfy on my hospital bed. "Take off your street clothes and put this shower-cap thingy and gown on. When you're ready, place your dignity in this plastic bag and throw it away."
Anyway, I'll be home tomorrow night so it won't be too bad. I have to plan to sleep on my right side tonight because there is NO WAY I'll be doing that for awhile after tomorrow! (Unlike days of old, port-a-cath is put in the front shoulder area instead of inner arm.)
I'm not sure how I'll feel after the surgery... Lisa offered to post for me so you'll hear from one of us tomorrow. I'm guessing I won't want to type as my right arm will be out of commission for a few days. :)
Charming
Here are the pretty silver charms I've received so far for my charm bracelet...
-->A teapot from Aunt El which memorializes the many, many times we have gone (and will go!) to tea rooms on the Cape.
-->A sunflower from Aunt Re-Re and Uncle Web. The flower is a symbol of hope *and* was made on Martha's Vineyard by cancer survivors!
-->A lobster from Lisa. ("Pinchy, no more pain where you are now, boy! (sob) Pass the butter.")
-->A mother and father with baby in a heart from my mom and dad. :)
-->A moon and star from cousin Jen and her family. I'm not sure they even know how much I LOVE skywatching!!!!
-->A rainbow from the Clearys signifying better days ahead. Yeah!
I know others are on their way and already think this is the most amazing gift I've ever received! My nana was showing me her charm bracelets this afternoon and I positively LOVE them! She remembers what each charm means and I know I will be able to do the same for many, many years!
Much love,
Jen
Next Appts
Oh LORD what a shitty day (sorry Nana).
You already know how the oncologist called this morning (below post), but I went back to sleep... and was woken up by an acid reflux attack complete with choking and an inability to breathe as my LUNGS had filled with something. Everything was quiet by lunchtime, and I had a dropped-egg on toast and a yummy strawberry instant breakfast -and-lemonade sherbet shake my mom made for me. And from there I was ill until I simply fell asleep. I woke up at 5:30, saw myself in a mirror (ARRGHGH) and went outside to get some air and take more flower and tree pictures. And here I am now.
My mother talked to Dr. Osteen's admin Peggy, who even HE turns to for advice, and she was horrified they would try to give me an
endoscopy without anesthesia. (A recent surgical procedure was done removing stomach and esophagus and you're going to go in without knocking her out?!?) Thank you! Some people can handle it, but I know I can't, and having the surgery just puts another chip in my pile. No I WILL NOT do it while awake. If you can't get an anethesiologist just knock me on the head with a brick.
So Peggy pulled some strings (Dr. Osteen's name carries a LOT of weight) and my appointment is now Tuesday morning. I'm still having the port-a-cath put in on Monday, and after learning a bit more about what they'll do, it really isn't a good idea to do them both at the same time. I guess my chest, shoulder and arm is going to hurt (well, it *IS* surgery) and it's a bit cruel to do that and THEN make me undergo the endoscopy.
In the meantime I feel crappy. BLAH.
But on the up-side I just figured out what color my "cancer" ribbon is. It's Periwinkle blue (not the "Bile green" I assumed it would be). I've seen it for esophageal cancer (which is different) but now realize periwinkle covers a few different things. Ready?
--> Eating Disorders
--> Esophageal Cancer
--> Gastroesophageal Reflux Disease (GERD)
--> Irritable Bowel Syndrome (IBS)
--> Pulmonary Hypertension
--> Stomach Cancer
Ew, of all of those Stomach cancer is almost the least embarrassing. Like Austin Powers' enlargement pump-- "It's not mine!"
Who wants to be the first to give me a shout-out for somehow knowing my color is periwinkle? I mean, check out the color blue I picked for my blog!!
CT Scan Results
So it might be nothing, but then again, I haven't had that kind of luck this summer...
My oncologist (Dr. Bhargava) called me yesterday during my nap and when I called him back he had left the office. But he just called back. I could hear kids and TV in the background. Good grief, the equivalent of a visit to the doctor's personal office complete with desk and diplomas.
Dr. Bhargava said they received the results of yesterday's CT scan and there's a "thickening" of the wall of my stomach in the area where Dr. Osteen (my surgeon) connected my stomach back together. I listened in slight disbelief. ALREADY!?!?! How the heck can cancer grow that fast?! It's barely been a month!
It could be scar tissue, Dr. Osteen told Dr. Bhargava, and it's extremely unusual that it would come back so fast, but it's not impossible or out of the question. I'm back in the position of doctors having to apologize to me "We're extremely surprised too, sorry to have to give you this news."
I canceled my dentist appointment today as I'll now have to go into the Brigham TODAY for my 3rd Endoscopy. I told Dr. Bhargava I would have to have anesthesia, which I know he wasn't prepared for. I'm still hoping they can fit me in today. "Do you really need it?" "Oh yes, I absolutely can't have one done without it."
Anyway, while we wait to find out exactly what was seen on the CT (and I have a feeling they know it's a return of the cancer, they just want to be certain) please keep me in your thoughts today! :)
I should add that today is the 2-month anniversary of that lovely announcement: "You have stomach cancer." I think I'm getting used to being told...
Swimming on the Vineyard
I actually went swimming yesterday! As soon as I was released from the hospital I've been waiting... and that's only because once I was told I COULD NOT submerge the incision area I desperately needed to. :) It was so beautiful to be in sea, even if it was a bit cold and I didn't dare do much actual swimming. I figured I'd either cramp up or exhaust myself. I didn't cramp up, but I will tell you I slept like a rock last night. It's only the second time I have slept completely through the night since surgery. I don't always post in the middle of the night/before the crack of dawn, but I'm awake and wandering around the house!
I went to Brigham & Womens this morning for a CT scan which is needed for the chemo study I signed up for. I then went to Dana Farber to have an EKG, blood taken (Hey, I was just *given* blood a month ago!!) and meet with Colleen who is the research nurse in charge of the chemo study. She is different from my oncologist's nurse, Nina, who I will meet with October 3. ANYWAY-- I learned that the treatment schedule will differ depending on if I end up with "standard" treatment or "standard plus" treatment. (The "plus" means 2 additional drugs and many additional side effects.) If I have standard treatment I'll probably be in the hospital each day Oct 3-6 and off the rest of the month, but if I have "plus" they're going to hook me up to the continuous pump and set me free into the great wide unknown (no, actually I'd just go back once a week to meet with Dr. Bhargava, my oncologist).
Sooooo the short version of events is that tomorrow I have another dentist appointment (wheee!) and Monday I'm getting the Port-a-cath "installed". There are a lot more things planned but I seriously can't think beyond Monday.
I'm going to my
card-making class tonight which is great because last month I was still in the hospital and couldn't go. :) I really hate the night-time things because I'm most uncomfortable at night, but I'm always so glad when I get there. :)
I think I'm going to take pictures of the charms as I receive them, since that's the best way to share them with everyone! I will have to do that later this evening. I'm so overwhelmed. I was talking to my mother last night about how I love getting them but the whole "I have cancer" thing makes me awkward, like I'm soliciting. (You know I'm not, right? RIGHT?!?!?!) She said to consider instead that my friends and family are gathering together to "wrap their arms around me." It's an image with so much love, comfort and safety...
I haven't written it here in a while though it is always, always on my mind: Thanks from the bottom of my heart for everything you've done for me. For your prayers, your cards, your gifts, your emails, and many times for just BEING there for me. I'm surrounded by phenomenal and caring people, and consider myself extremely blessed.
Thank you!!!!
Another Top 10 List
More fun from
Planet Cancer!
Top 10 Signs You've Joined a Cheap HMO--> Annual breast exams are conducted at Hooters.
--> Directions to your doctor's office include, "Take a left when you enter the trailer park."
--> Tongue depressors taste faintly of Fudgesicles.
--> The colon specialist is only available on his days off from Roto-Rooter.
--> Only item listed under Preventive Care coverage is "An apple a day."
--> The used needle receptacles have recycling symbols on them.
--> Patient responsible for "200% of out-of-network charges" is not a typo.
--> Your Prozac comes in different colors with little "m's" on them.
--> The radiation techs are wearing old Stormtrooper costumes.
--> The only expense covered 100% is embalming.
Stupid is as stupid does
I am an
IDIOT.
I drive a car which is quite low to the ground. Not as low as say, a camaro, but low nonetheless. And I have to be careful getting into my car so I don't hurt myself. You see where this is going already, don't you?
This afternoon I kind of threw myself in the car the same way I always used to. And then sat there with the door open, yelling out "OOOOWWWWW! MY SIDE!!!" for all to hear.
I had to go back to taking Tylenol and wasn't able to go to my cake decorating class. Aunt El thinks I did it all because of my adversion to the clown cake. :) I frosted the cake already though, I was planning to suck it up and just DO the clown decorations. I guess my mom and I will decorate it later on.
I'm going to Martha's Vineyard tomorrow with my mom and Aunt El to spend the day with Aunt Re-Re and Uncle Web. Even if I have to take Tylenol every fifteen minutes I *am* going!! :)
Looking the Same...Feeling Okay
The Look Good...Feel Better class was actually very good. I think it might be better if I go again when I'm feeling crappy though. I can't believe how much free make-up they gave each of us. TONS of brand-new name-brand stuff. I think my favorite is eyelash tint. How come I didn't know about this before?! :)
My Aunt Jeanne and Uncle Bob visited last night, we had such a great time! They brought me some ice cream too, some of which I'm eating right now. That's right, at 6am. I feel like I have another excuse for stupid things now. hehehe. My aunt did the
Dana Farber/Jimmy Fund Cancer Walk in my name the other day, which I didn't even know about! How amazing is that!! I will definitely have to do it next year, and I intend to guilt others into joining me. :)
Okay-- AWKWARD!!! I received a fantastic
half moon and star charm yesterday and I don't know who it is from!
I should explain-- my cousin Gin is spear-heading an effort to put together a silver charm bracelet for me. Her suggestion is one I would love even if it wasn't for me!! When I look at each charm I'll remember who gave it to me, and it's a way for them to "be there" during chemo and radiation. But since I don't know who gave me the moon and star I'm kind of at a loss. Can the sender of the generous gift please email me or post below? :)
Anyway, my chemo start date is really creeping up on me. I guess it's 2 weeks away? Yikes. At least I know it won't HURT. None of it will hurt. Except the needles. Ow! :) (What a baby!)
Last night I was listening to the women discuss life with chemo/radiation and not one of them was back at work. They said the most active they could be was for 45 minutes. But then they all had me beat by about 25-30 years. I felt SOOOO out of place, as if I maybe should have gone to the "teen" version of the class. Not that they were unkind, it's all my mindset. I still feel like a fraud sometimes. "Why am I here with these people sick with cancer? I shouldn't be here, I mean, I don't have.... oh, right."
I'm so tired I'm staring cross-eyed at this computer monitor but I still can't sleep. I even took a prescription pill to help me relax (I found that the sleeping pill was just too strong).
Such a bizarre predicament.
I'm just extremely uncomfortable tonight. The pillows are smothering me and the bed is so soft it's swallowing me up. Unfortunately, I like a rather firm mattress and have very often (in the past, obviously) slept with NO pillows. So much for THAT! This "6 pillows" thing is just ridiculous. But without them I can practically feel the acid reflux getting ready-- like revving one of those cool new ford mustangs.
I'm going to an American Cancer Society thing tonight. It's called
Look Good...Feel Better. I'm very curious, not just about what it will be like, but who else will be there. Hmm... I guess I'll learn how to look like those silly women who pluck their eyebrows off and then pencil them back on. :) They have similar programs for teens and men, but this is geared toward women. Will they be like me, trying to figure out what to do before anything has fallen out? I'll bet if you saw me in the mall you'd have NO clue what I've been through and about to go through. I have to assume it's the same way for many, many people. I just never gave it a thought before.
My mom and I have our cake decorating class on Tuesday. We're supposed to make a
clown cake and I've told the instructor I think it's abuse. I refuse to buy the required "clown heads" to finish off the cake because I don't want to OWN them. Way to torture someone who doesn't like clowns!! I'd skip it but I think we're going to try again to make the
frosting roses. What a great thing that would be to know how to do! Once I figure it out I'm going to make them out of miscellaneous things I find around the house like plaster or potroast. Fun! :)
Jen's Mascot
My new mascot,
survivor girl! (How cute is she?)
The
artist is a cancer survivor. I love the sweetness of survivor girl, but I'm still all for the
cancer sucks motto.
Planet Cancer
I found a cool website this morning, called
Planet Cancer for people my age. We're not the children with cancer, nor are we in our mid-100s. It's a fun website, and I thought I'd share one of their top 10 lists. I didn't write this (but could have, hehehe)
Top 10 Responses To Nosy Questions About Scars--> Never go to Mother's Tattoo Parlor when you're high.
--> You think that's bad, you should see the exit wound.
--> I self-mutilate. Don't you?
--> Those damn flesh-eating bacteria are spreading, slowly but surely.
--> That's where the government put the chip to track my movements.
--> It's the only way to smuggle drugs these days.
--> What scar? What are you talking about? Oh my God! That's HUGE!
--> I had to sell organs to get off the street.
--> I should have listened when Mom said not to scratch that mosquito bite.
--> That's where my Siamese twin was attached.
Oh, and please remember, I'm the scar flasher and don't feel questions are nosy. :)
Some Dates for Next Steps
Yet another lovely food adventure where what goes down must come back up. Yuck. This better not become a regular thing. #1 lesson learned: for the love of all that is holy, I must stop trying to drink while I eat. It's hard because things are salty or sweet or dry, and research has shown that liquids help with this problem. But in my case something bad WILL happen.
It occurred to me tonight that gastric patients aren't allowed to eat for a month or two after surgery, they're on protein shakes and yogurt and stuff. I tried to eat a steak and cheese sub. Again, the sub wasn't the problem, it was the gatorade I carefully sipped after a few bites. And then the old "Oh, here we go again..."
So anyway I have some more information nailed down, like dates, etc for next steps. I mentioned Sept 22 already below, and that's still on the calendar. CT Scan #2 of 3, blood work, and meet with nurses. I'm scheduled for day surgery Sept 26 at Brigham & Womens to have a
port-a-cath implanted. Seriously, follow that link and read "Principles" (shiver). Who wants to trade places? Anyone?
I'll bet it just a way for the government to track my every move. Boy will THEY be disappointed. (BORING!) :)
One week after I get my top secret transmitter device I will begin chemotherapy. They've given me October 3 as a "go" date. And I STILL don't know if I'm in the "standard" or "standard plus" path.
On top of all of this, I had my teeth cleaned today in preparation for radiation/chemotherapy (which can cause LOTS of problems, as can the stomach acid) and I have to have some cavities filled. YIPEE!!
Everyone says "Hey, you've been through a lot worse" every time I'm in a painful situation. And I say nothing but think, "granted, but THIS is hurting me NOW." I actually can't handle pain any better than before, I'm not sure why so many think I've been conditioned somehow. Really, I haven't! I don't want the radiation tattoos or the implant or the needle-pricks. They'll make my eyes water and hurt me. But the alternative is..........?
I've gotta do what I've gotta do. :)
Tony Snow on Cancer
My dad passed along a
column by tv journalist Tony Snow, which I thought I'd share. It's very good, but if you don't care to read it, here are some things he listed as having learned through 7 months of cancer surgery and chemo...
--> Faith matters. Prayers heal. Love overcomes.
--> People want to do good for others; they just need excuses.
--> Fear is a waste of time. The worst that can happen is that we'll die -- which happens to everybody, anyway. Until the Grim Reaper comes knocking, we're alive.
--> We can count our hardships, but not our blessings.
--> Life does not revolve around us. It envelops us.
--> There is no condition that someone else has not already overcome.
Didn't We Get Past That?
I had a reflux attack again this morning. There's a burning from throat to stomach, a desire to violently cough and a general inability to breathe. I don't know how but hot tea makes it all go away. Is there *anything* tea can't do? I'm on my third cup today (don't worry, it's decaf).
Just for Desiree, here's a picture of my dog, Bodo. He's furious that my parents' dog Krieger is outside playing while he is stuck in the house:
I have to get a CT scan next week, all in prep for radiology. They're going to line up this CT scan with the one I had before the operation so they know what was there, and what area to radiate. They promise I won't have to swallow the usual 60 gallons of barium. I'll believe it when I see it!
Two thoughts
Just a thought...
If I can't deal with nausea NOW, what the heck am I going to do once Chemotherapy and Radiation start?!?
Oh, another thought: Today is one month since my surgery. I've got a quarter of a stomach (average holds 32oz, mine is less than 8oz), I'm missing a really important part of my esophagus, I have a scar across my chest which will be a nice reminder for the rest of my life, but maybe, just MAYBE-- the cancer is all gone.
Peace.
Food is yucky
I know I'm not eating enough. I KNOW IT. But it's really hard! I don't WANT to eat. I didn't eat today until 5pm when I realized "crap, I've gone all day without eating again" and I had $2.00 on me. So where do you go when you're away from home and you haven't eaten all day? That's right, McDs.
So on the way home I snacked on a small order of french fries (thinking- hey, it's potato, how bad can this be?). And I got home and half of it, er, came back out the way it went in. I actually thought I'd be ill in the car (NOT THE NEW CAR!) but I did make it home. So I learned a few things today:
--French fries on an empty stomach = BAD
--Fried food on an empty stomach = VERY BAD
--Throwing up with my new itty-bitty stomach surprisingly doesn't hurt
--In fact, I felt a hell of a lot better
Before that I had a great afternoon with friends Chris (taller, somehow?), Janet & Dan. I laughed incredibly hard, which was wonderful, and brought new meaning to the idea of "side-splitting". I really did have to walk away from the group a few times.
I went to see Ellen at my favorite
cross stitch shop afterwards. Like Dan, she's been a great source of inspiration and advice having been through "Joys of Cancer". She even had a
catalog she'd picked up for me with pictures of wigs and scarves and... I still don't know if my hair is going to fall out. But I have to be mentally prepared. Or, I guess I'm trying anyway.
I took a billion pictures this evening with the idea of putting together a book I can flip through in the evils of winter (aka February) when chemo is trying to break my spirit.
This one is a cheat because the lens was foggy. I like it because it makes me seem "wicked aahtistic". :)
I think this is so pretty. It's some sort of rose bush.
Here's some pumpkins, still hanging out in my dad's garden. Though the vines look nearly dead these are still growing!
A benefit of basically moving back home is that my mom made me a dropped egg on toast for dinner. I didn't take a picture of it, so you'll just have to take my word for it. She has become a huge egg pusher. (Simpsons reference: "So, the egg council got to you too, huh?") Even Lisa will agree because when she was here I think the poor girl had eggs for every meal. Omlette? Dropped Egg on Toast? Scrambled eggs? Quiche? Anyone?
Still, it's nice to be able to get out a little bit more, to see people and do things. To DRIVE! How we take the little things for granted...
Piece of Cake
The acid reflux issue is infinitely better. Thank God for
drugs that WORK!! It's not perfect but I'm so much better than I was. What a relief!! I'm (obviously) still awake and wandering around in the early morning, but I'm sure even this will stop with time.
My bigger issue is a very confused intestinal system. I actually feel best when I haven't eaten. Eating sucks and I just don't want to deal with the issues anymore. That's what's waking me up now. Well that, and rolling over: "OWWW!!". You don't wake up with pain. Pain wakes you up. Good morning!
Tomorrow (thursday) is officially one-month from surgery. I regularly have to be reminded that it's only been a month and that I had "major" surgery. I expect too much of myself. Hey, maybe Gatorade is making the whole intestine issue worse? But I *need* it, I feel dehydrated all the time.
My mom and I are taking a
cake decorating class, both for fun and to think about something ELSE for a couple of hours a week. I decorated my first cake without jimmies or canned frosting!
I had to write something on it as part of class, otherwise I'd have left it blank. It's not particularly spooky. ;) Only that I overdid it with the vines. Oh well!
Where do I file a complaint that there is nothing on TV at 4:00am except Dharma and Greg?
As always, thank you for your cards, notes and gifts. Please know I truly love hearing from everyone and I'm getting better at responding... In fact, thank you cards are on their way (finally!). In the meantime, here's your piece of cake! :)
I Can't Drive 35
I drove today for the first time in a month. It was a beautiful evening and I had my windows down, sunroof open, and a full tank of gas. Well, exciting as it COULD have been, I only drove across town to my condo. No big deal. :) Turning left hurts (fyi, your stomach is under your left lung), seatbelt hurts, bucket seat kinda hurts, driving fast makes bumps more pronounced... But independence and cranked-up tunes made it worth it!
I got home and turned the A/C to 68 (it was at 72 but really stuffy) and sat down on my bed for the first time in a long time. I even stretched out and put on the TV. HOLY UNCOMFORTABLENESS batman. For the first time I realized that my brother's ridiculously soft bed might be better than my bed for this stage in my healing. I bet I was on that bed 10 minutes tops.
I checked my answering machine, and some messages were from August 11 (oops). The thing was completely full and nothing was important (mostly reminders for doctor's appts and well-wishes (thank you!!)). I thought about shutting it off but left it on. I hope no one leaves any messages on it that require action. I'm as good with voicemail as I am responding to email. :)
I didn't eat today until 8pm. It's strange to me how sometimes the idea of eating just turns my stomach inside out, even as I KNOW I'm supposed to eat 6 times. There was nothing I wanted to eat. I ended up eating a frozen dinner I brought from the condo. And a chocolate chip cookie. The cookie was a bad idea. I feel blah again. I'm thinking about making tea. I *LIVE* on tea and crackers. Oyster crackers are my favorite. Mini saltines in fun shapes!
I went to
the cape Friday and paid for it all day Saturday. I even had to take an oxycodone, which I had been off for awhile. Today has been better, but I hurt more than I did earlier in the week. I'm back to holding my left side like something might fall out.
Two steps forward, one step back.
I've discovered an ability to selectively listen. I just remembered my radiologist saying the cure rate is 50% for stomach cancer. And I dismissed this information without it upsetting me. "Yes, well, those people were more sick than me." How the heck do I know that?!
Lisa, how are we coming on those "Touch me, I'm super-soft" T-shirts?
Flashing Ahead of Schedule
My dad's cousin Gin stopped by today. It was so nice to see her! I think she was surprised that I seem almost completely normal. I am, of course, on best behavior when I'm visiting with people ("everything is great!"), but I'm getting to the point where I feel nearly like myself. It's when I get it in my head to roll over in bed (BAD!) or lounge on the couch (BAD!) that I remember I'm not quite there. And I have up and down times still as expected.
All of my doctors have told me I'm ahead of schedule as far as recovery goes. It's been three weeks and I expect a LOT of myself. I have trouble unloading the dishwasher-- it just hurts a lot to bend over and lift the heavy plates but I keep at it. And like when I was in the hospital, I walk when I don't want to. It seems sometimes like I'm fighting an instinct to curl up in a ball and hide. Strange instinct... that's a way to guarantee I wouldn't get better!
Oh, and I feel the need to show people my scar so if you see me, watch out. I've become a flasher. :) My radiologist was doing the 5-minute check (eyes, lungs, etc etc) and when he saw my stomach said "Ah, it seems Dr. Osteen has been here." "Yes, but he wouldn't sign it." I look at this odd stripe across my body all the time and just think everyone else should get to see it too.
I neglected to mention that Dr. Mamon said I'll be tattooed for radiology. ARGHG! I know it won't be huge but like I need another permanent *REMINDER* on my body. He said they'd be small marks like freckles. Well yes, Irish lass that I am I'm quite covered in freckles, but none are BLUE. Here's hoping I get to pick the ink. :)
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Decent News, Finally!
I can NOT believe I am awake right now. Acid reflux didn't wake me up but what did? I'm exhausted but restless, a seemingly impossible combination.
I had a busy day, I actually went into work this afternoon! I didn't get any work done, obviously (it has been a month after all, I'm not exactly hooked into what's going on) but it was so nice just to sit in my chair. It gave me a great feeling of belonging and a renewed sense of "I'll be back" which I think is extremely important. I'm very glad I went and recommend anyone in my shoes do the same. Just visit work and sit in your cube/office for a few minutes. See if you don't feel the same.
My parents and I met my radiologist, which is why we were in Boston.
Dr. Mamon's online picture is so outdated it's actually amusing to me. He's an extremely intelligent guy and took a lot more time with us that I think was scheduled. Dork that I am I wanted to know what Radiation IS and DOES. He explained it all in great detail which is important to me... I need to be able to go in for treatment not thinking "what the heck are these stupid light beams doing" but rather "these beams are hurting the bad cells with the good, so after I get out of here I have to help the GOOD cells heal before my next treatment." You have to believe positive thinking plays an enormous part in this. Even if you don't think that way, you would if you were in my shoes. It's the only control I really have!
I learned my cancer is stage 2. WAS stage 2. I also learned that stage 2 stomach cancer is rarely recorded. It's usually found at stage 3 or 4. The doctor was quite optimistic about the chances of my cancer being GONE right now, and that treatment just improves the odds it won't come back. He talked more about the study (standard and standard plus) and convinced me that the side effects aren't significantly different. More important still, I decided that if cancer returned in say, three years, I'd be furious with myself that I didn't TRY to do all I could for myself. So I signed up for the study. I'll have to go through an evaluation and then the miserable computer in NC will decide which treatment plan I'll get. (Lisa B if you could spill some soda in that computer for me, it would be great :) )
Lots was clarified for me-- like I'll only have to go through ONE course of radiation, not THREE. (phew) The whole process will still likely take 4-6 months, but it seems so much more do-able to me now. It will go: Chemo, Chemo + Radiation, Rest, Chemo, Chemo. Each section is about a month long.
I'm dizzy and feeling yucky right now (maybe that's what woke me up?) so I'm signing off. More to come...
Jen
Attack!
I finally fell asleep about 5:45a and Lisa woke me up (as previously agreed) at 6:30a. All was well until I sat up in bed. I learned a valuable lesson. An empty stomach is very, very, very bad.
I had such painful reflux it left me choking and nearly unable to speak. Crackers will now always be within arms reach, including on my bedside table. I may have to set some kind of cracker alarm to wake me up and eat. hehehe
Hard core stomach acid is nasty. And how dreadful is stomach cancer-- how can that stuff live and thrive in such a wretched environment?
No, Actually Ramp Beds are Crappy
Well it's official-- I have insomnia.
I guess it can be expected, I sort of *do* have a lot going on to ruin a good night's sleep. I probably dozed a bit between 12:30a and 2a but I definitely didn't sleep. I put the light on and read for an hour then moved downstairs to sleep on the porch recliner... I ended up just watching a Simpsons episode on my computer (Stonecutters!) and staring at the ceiling. Well, it's too late for a sleeping pill, but at least I have some for tomorrow night.
My mom and Lisa took the lifts off the headboard of the bed for me so it's not slanted anymore. I really didn't like it, though I know it's what I'm supposed to have. The head elevated by 6" is to help with the reflux, but makes everything else uncomfortable. No deal. I thought that was why I had insomnia last night, but obviously its something more...
I saw a shooting star about an hour ago, when I let Bodo outside. It started exactly where I was looking anyway and streaked across the sky. I think of them as good luck even as I know the science behind them.
I think I'm going to just give up on sleep and head for the great room. I have my Looney Tunes DVDs here and I think I'll just sit back and enjoy. I have to get up in 2 hours anyway to take Lisa to the airport. Her visit was so short! :(
Ramp Beds are Cool
You know when you have acid reflux how it's usually because of a huge meal? Like say you ate too much bacon, then you're tasting bacon the rest of the day? I always taste medicine. It's absolutely disgusting. (:P) I just thought I'd share.
So my dad took down the roped-at-an-angle cot (yay!) since I'm doing pretty well sleeping in a bed, and he put the headboard on some risers my mom bought. I'm supposed to sleep at an angle, but the funny thing is that my brother's bed (again, *my* comfy canopy bed is in my condo, which should frankly be up for rent at this point) anyway, my brother's bed does not have a footboard. So I have a slow-slide down the bed with nothing to stop me. My aunt Jo said we should get the walkie-talkies out again: "Hello? Anyone? I've slipped out of bed and I'm stuck on the floor again..."
I went to Friendy's today with Dr. Crazy and ate a grilled cheese sandwich (no crusts) and a few fries. It's DEFINITELY the most normal food I've eaten. I always feel like I've just eaten a thanksgiving meal. Food is just that appetizing. Plus since it comes back regularly, you have to make good choices. hehehe. We each bought something called a Peanut Butter Lust Bar. I can't believe I haven't eaten mine yet. Anything called a "Lust Bar" HAS to be good.
Okay, I am stalling.
I met my oncologist,
Dr. Bhargava at Dana Farber on friday with my mom and dad. Lisa was the official note-taker, which is good because much of it was hard to listen to. I will be getting Chemo and Radiation as I discussed earlier, but there was something about being at DANA FARBER and having the things described which will happen to ME which have only happened to other people. That I'll be weak and tired, probably nauseous unless *other* drugs start to work, possible kidney failure, possible heart damage, I
may lose hair with one treatment option and
will lose all my hair with another,... and that's part of it. I have to choose my treatment.
There's standard, and what I call "standard plus" which is a study I can take part in.
Under standard I'll have 3 weeks of chemotherapy. I will go into DF once a week. Then for 6 weeks I'll have chemotherapy and radiation. This is every single miserable day. EVERY DAY FOR SIX WEEKS. (Anyone offering help will not be turned down-- I'm going to need a lot of rides into Boston to relieve my poor mom!) After six weeks of both, I'll get a month off to recover. And then we repeat the cycle
two more times.
So that puts us in April. They'll watch me like mad for 2 years, then back off a bit as I'd be considered "in remission" if nothing else happens. After five years I'm "cured" but I don't think I'll ever stop looking over my shoulder. Nor will I stop going to DF. It's just going to be part of my life, I guess. That part is kind of hard to take. I'm only 30. I look at people who are starting families or really breaking into their prime in their careers at this age. I feel like my life is on hold and 125% out of my hands. It's kind of depressing. I try not to think that way.
I will have to go back to Dana Farber in about 2 weeks to meet with my Radiologist. They're also going to schedule me for day surgery at Brigham and Women's. I have to have a "port" set under my skin, along with some tubing (ARRGHGHGHHGHHG I HATE THIS IDEA!!!!). It's basically the way they will get chemotherapy to my body during the six weeks of radiation. I have to have it flowing 24/7. I will have to sleep with this bag thing which attractively comes in a fanny-pack style. I'll have to live with it for 6 weeks... and when it comes off, I'll know I have to do it TWO MORE TIMES.
So I remind myself that the cancer is gone, and I need to go through this process to make sure it does NOT come back. The oncologist said that 2 out of the 13 lymph nodes removed were cancerous. So those are good odds. Not like 12 out of 13. Plus, they're gone now. I'm likely cancer-free, at least at this point. The cancer in my stomach was THIS TIME described as fast/aggressive (didn't I say it was slow earlier? I think I did) and estimated I've had it 1-3 years. AND- there was another tumor (non-cancerous) in my stomach which was removed with everything else.
Holy crap!!
It makes me a bit numb still, but I'm continuing my "live for today, and today I don't have to deal with it" philosophy. I have NEVER been this kind of person. I live in the past and look to the future with general anxiety. And *NOW* I can say that after I log off here I'll go up to bed, and when I wake up tomorrow I'll probably have a hard-boiled egg. And that's as far forward as I'll think.
Oh, I mentioned "standard plus"-- the study. That would mean that I do exactly as described above but I would take 2 additional drugs and the chemo would always be through the port. It's MUCH more aggressive, and of course, many more and uglier side-effects. The oncologist mentioned the study exists because the odds of being cured (not just remission) through standard means are about 75-80%. Those are admittedly GOOD odds, but not GREAT odds.
And if I decide to go with the study, it only means I've agreed to it-- a computer in North Carolina ultimately decides if I will get it. Nurses will check me out, and if I am a good candidate, they'll put my info in this be-all-end-all computer which will randomly decide if I get standard or standard plus. My mom was not thrilled that my "life is in the hands of a computer". Though the doctor disagreed, I see her point.
I think I'm about 3 weeks away from the start of everything. I'm still given time to recover from the stomach surgery, which is excellent news. I'm getting better every day and ready to try again (take 2) to switch from Oxycodone to Tylenol. I'm very mobile and I'm also good about my morning and/or afternoon naps so I think I'm doing the right things to heal. It still hurts a lot, though it's VERY painful to cough or (the worst) sneeze. As my aunt Jo said, I've got a single long line across my chest but there are all kinds of stitches, etc INSIDE my body. The oncologist said there's lots of nerve-ending damage with any surgery, and that's likely part of the pain issue. Hey, is there a better excuse not to do sit-ups or run a marathon? I suggest not! :)
So, that's where we are now. I'm going off to my bike ramp-like bed now. Please remember to keep me in your thoughts and share the news or this website with whomever you wish. Remember the rules-- straightforward and no whispering!
:) Jen
By Accident, but not "Early"
I wake up between 3am and 4am every morning. MAN that is annoying. I think it proves I'm sort of napping, even at night- I only sleep 3 hours at a time. And when I first sit up in bed... well, since losing the functional part of my esophagus I burp like a truck driver. It goes like this: "[burp] OW!... [burp] ow, dammit..." I'm just as surprised to hear it as everyone else. I've completely lost the ability to burp daintily and like a lady. GONE. And it
hurts which is a nice bonus. Dear lord I hope that is not permanent!!
So the staples are gone-- YAY! I was actually able to sleep on one SIDE earlier tonight! A miracle!! But I was too flat in bed--not enough pillows, and acid reflux woke me up instead of the usual general uncomfortableness (is that a word?). Still, it feels much better to have all that metal gone. My surgeon, the most stoic man you'd ever meet, said my chest looks like part of the
Atchison, Topeka & Santa Fe. Hehehe. :)
And I asked him about Celiac's disease. I figure- this man has made the gastric system his life's work, who would know better? I read that if I IGNORE symptoms of celiac's disease I could damage my intestines eventually leading to cancer. I asked this as he's plucking the staples out... "you have other things to worry about."
"Really? Because the nutritionists were very worked up about it while I was here."
"Oh, nutritionists on the loose again..." (Isn't that a Loverboy song?)
He said that until I have symptoms I'm okay. Finally, the voice of REASON! So bring on the cake! (Can you believe I wasn't allowed to have Ovaltine? That's anti-American!)
So pathology... Well, Dr. Osteen said he wouldn't consider it caught "early" anymore as I'd always thought. I knew lots of "stuff" was sent to pathology but wasn't really thinking that anything would come back. I KNOW that sounds dumb, but there you go. I figured it would be "yes, you had cancer"...
I had lymph nodes near my esophagus removed, and it turns out 2 were cancerous. Soooooooo that could mean it's in my blood and cancer has moved in somewhere else. It could also mean nothing except HOLY CRAP I can't believe it was found by accident. Can you BELIEVE this? There was cancer in my stomach, moving out to my lymph nodes, and it was all found by accident... it's the big reason I can stay upbeat and optimistic. UNREAL.
So the next course of action is what you would expect. I have an appointment Friday at Dana Farber. Yes, THIS Friday (they don't mess around, huh?). I'm not certain if Chemo will start right away, but I assume this is where I meet with an oncologist to discuss treatment options. I will also meet with radiation, though I'm not sure how they can pin point any cancer to zap. That may just be a formality. My surgeon described the next steps as designed to "continue beating" on me. Ugh.
But in the meantime, my aunt Joanne went home (I couldn't have done it without you Auntie Jo!) and my best friend Lisa (aka Dr. Crazy Old Lady) is here through labor day. Can you believe she's never had a Dairy Queen Blizzard?
Oh, thanks to Sarah for sending me some beautiful note cards which forced me to accept that I can't possibly hand-make my thank you cards as I've been trying to do. It's just impossible. The measuring and the cutting and the glue and the ribbon, oh yes, it's lovely, but I'll be done by new years at this pace!
I don't meant to single Sarah out, as I continue to receive wonderful and warm messages from my extended family and my friends who are like family to me. I am so thankful for the witty and the touching gifts, and I love all of you for thinking of me!!
Jen
They got rid of most of the black and blue pen but the red wouldn't come off. In truth, you know I've just been looking for an excuse to show my wrecked stomach. Hehehe. (This is seriously only half of my scar. Scary, huh?)
