jenny's belly

Really? Moderate Intensity Exercise?

2010-06-02T17:17:00.002-04:00

An open response to the following article:
http://www.foxnews.com/story/0,2933,593874,00.html

Dear Ms. Schmitz,

I know you are not a cancer survivor, and yet I still appreciate your concern. "[Moderate intensity Exercise] during and after treatment is safe and beneficial for these patients, even those undergoing complex procedures such as stem cell transplants." Unfortunately, your message is a bit misguided. Above all, doctors should tell cancer patients to listen to their bodies.

During treatment, there is a prevailing internal voice ("do the best you can") which begins when you wake up and ends only when you fall asleep. This applies to everything from eating, a flight of stairs, and brushing your teeth. Do the best you can. Try to walk. Eat and drink. Read. Smile. Remain positive. If you can do all these easily, take the next steps. Try to do your job. Take care of your family. Complete your regular routine.

Cancer patients want to maintain their "old" lives, unchanged. It's impossible, of course, but it's the goal. Anyone with the energy to exercise will get up and move. There is no cancer patient sitting on a couch, eating cookies, reading a book, and loving the relaxation. DOES NOT EXIST.

"Cancer patients and survivors should strive to get the same 150 minutes per week of moderate-intensity aerobic exercise that is recommended for the general public..."

To add the pressure of an organized exercise routine during treatment is, in a word, insane. After treatment, absolutely. The brain starts firing again as the poison exits. You can feel your body want to move again. There are physical therapists specializing in this area, in fact. The movement--still under the "do the best you can" mantra--can only do you good. And when you feel you can't do anymore, you rest your body until it can move again. Essentially, baby steps toward restoring your normal self.

At least the panel has it almost right: "[Doctors should take] into account [the patient's] general fitness level, specific diagnosis and factors about their disease that might influence exercise safety." Sadly, dear panel, it doesn't come down to exercise safety. Few will pull a muscle. They're going to collapse from exhaustion due to pushing themselves too hard.

I went to treatments, appointments, and consultations. I took my medications, listened to my militant nutritionists and followed every bit of advice I was given to the best of my ability. I did all I could to avoid hospitalization and keep my blood levels high enough to continue treatments. Moderate exercise was not on the radar. Even my hair hurt.

I appreciate your advice to doctors, Ms. Schmitz, but please recognize patients should be told they can exercise moderately if they feel they are able. Basically, do the best you can.

Sincerely,
Jenny's Belly

(PS You're missing a "d" in your last name)

Maybe I've figured it out?

2009-12-02T11:19:00.003-05:00

I spend a lot of time trying to figure out why I'm here. I know a lot of people do, but I honestly feel like I was given a second chance to experience life. I basically put myself in the category of those who have died on the operating table only to return to their earthly bodies. It's hard for many to understand, but I feel like I'm on borrowed time. And since you don't get something for nothing, there must be a reason I'm still here... but the more I've looked into it, the more I think maybe the purpose of life isn't to DO something, but rather to BE someone.

So I don't have to invent anything fantastic, but rather make a lasting impression. I struggle with perfectionism in some areas of my life, so "trying to be the best" is not something I'm going for, but rather, to be kind to people. I'd like to be there for people. Be a good listener.

The fact that my dog passed away this summer from stomach cancer bothers me to no end, especially since it took me a few months to come to terms with it. Stomach cancer is rare in dogs and rare in people, so what the hell are the odds we would both have it? And I'd like to throw myself into research and talk to all of my doctors about it and frankly MOVE as soon as possible because clearly there's something in the water... But it's something I can't quite handle, so instead I offer it up.

I see my oncologist on December 15 for my 4 month check-up. No CT scan for a few more months. I always look forward to those scans....

Cancerbook

2009-02-16T22:45:00.004-05:00

I was bored on my computer and started catching up with all my cancer friends on "Planet Cancer". The part I pay attention to now (besides the articles, etc) is basically Facebook for cancer people (friends/family/patients/survivors). Sounds torturous but its actually comforting. You can always find someone in worse shape than you, and you can also find people who feel guilt because they aren't ask sick as someone else. I have to admit, my favorite people are those who are on there because they THINK they have cancer. Haven't seen their doctor yet, they're just self-diagnosing. Like one woman who went on and on about how she thought she had cancer and was looking forward to dying. It was unintentionally a complete insult to everyone on there struggling for their lives, but I think everyone treated her kindly.

Planet Cancer is for young adults, basically 20-39 (under 20 is generally pediatric cancer, over 40 is no longer 'young adult'). They didn't have the stuff they do now when I was going through treatment. They changed the format to facebook-ish about a year ago. There's still only one other stomach cancer person on there. She's the only one I'm aware of out there in this universe. I know its rare for a YA to get stomach cancer, but COME ON. Its not unheard of.

Which reminds me that I have to sign up for the Dana Farber one-to-one program, where you make yourself available to newly diagnosed people. I have to do an all-day training first and I've never been able to squeeze it in. But anyway, I really should. It would have been nice if someone had been there for me.

My next CT scan is in about a month. My last lab work in December came back very good. My red & white blood cells are 'babies' for the most part, which is cute to think about. They're very 'young' so I'm told (I guess they can tell b/c they're small) but at least there's promise they'll grow up. :) Neutrofils? I can't remember what they're called precisely. I don't have many adult blood cells, but my doctors say as long as I have the young ones I don't have to worry about the very low adult levels.

I've finally accepted that nothing is forever. I don't always remember, but I do believe in it. I don't mean that I'll LIVE forever. I mean, if I feel terrible, the feeling will pass. If I buy some blueberries and save them, they will eventually spoil. Know what I mean? Nothing is permanent.

Tony Snow

2008-07-14T09:31:00.003-04:00

Its been a very, very difficult weekend for me. Lots of emotional setbacks. I wasn't able to do anything at the condo because I basically imploded.
Tony Snow got cancer about the same time I did, and his upbeat personality really helped showed me the way to handle it. And he helped me make the decision to share everything about what I was going through. When his cancer came back, I was hit hard. I was at work when I found out, and I had to leave for awhile. I went to church. Which was the first time I'd been to church during my whole cancer...uh, whatever you call it. I wrote a poem, which is not me at all. I was a wreck for a few days, until I realized I was handling it worse than Tony himself. Then I cooled off, remembered to keep living as usual as best I could, and eventually stopped worrying.
His death somehow took some hope away. That's the best way I can describe it. Having hope is the one thing that keeps a cancer survivor going, and I know Tony would be mad at me for feeling this way if he even knew I was alive. A lot of people latch on to Lance Armstrong. I'm sure there's a stand-out breast cancer survivor I haven't noticed. Just its my opinion cancer survivors have mentors. Someone who reminds them they can fight and when there's no recurrance, to just live their lives in every moment. When you've faced mortality as a definite thing, not as something hazy in the future, your life changes.
I actually thought at one point "Well, I never got married but I guess I had a good run." I remember thinking of all the things I'd wanted to do "someday" but wouldn't get the chance to do it. Unless you've been told you have cancer, I think maybe you just can't understand, but that's okay. I'd rather you weren't told those words.
And there's just no way to get back to the way things were. I try hard to do things I want to do and avoid things I don't want to do. But I have a scan coming up in a few weeks and I'm awfully tired so its scary. Maybe its nothing. But "maybe it ISN'T nothing" is always there, just below the surface.
I can't watch any coverage of Tony's death. I wasn't able to be alone yesterday, but I'm alone now and doing okay. Still emotional, but not as anxious. Not all cancer survivors are rocks. You can't will yourself through it. Its the luck of the draw, and you do your best. Sometimes are harder than others.
I'll be okay. :)

warm blanket

2008-06-26T12:29:00.002-04:00

Oh, there's nothing like a warm blanket when you're sitting in the infusion chair. Its even a little warm in the room, but they ask me if I need anything and I usually ask for a blanket. It makes you feel like a 2 year old its so exciting and comforting at the same time. Sigh. I couldn't even read I was so relaxed. :)

SO--I got the 2nd of eight lovely iron infusions. I was stunned last week when they told me the one I'd had didn't do crap and I'd need 7 more. I never got that much last time, maybe 2 years ago. Holy anemia! Well, I did go to bed at 8:30 last night (I was reading) so I guess maybe I am really tired.

My endocrinologist thinks they'll put me on a regular cycle of iron to keep me from dipping too low. Oh, my vitamin D is up where it should be--the super pill works! Love vitamin D, its been repeatedly proven to be a cancer-fighter. Start taking it! You! Reading this!

Doing well other than being tired 24/7. I actually am happy to be doing to Dana Farber weekly now. I do love that place. There's nowhere else like it, where I KNOW I'll be 100% taken care of, no matter what the issue is. I think some people get the same feeling from religion or their gramma's house.

And then you top of that feeling with a warm blanket... and its a miracle they get me to leave at all. :)

Iron (wo)man

2008-05-14T09:17:00.003-04:00

I'm so excited--I've finally gotten my iron levels to tragic levels so they're giving me an iron infusion tomorrow at Dana Farber. The iron pills just aren't cutting it and there's basically none in my body (safe levels are 37-170 and I'm less than 17.) As for iron storage, I have "3". Apparently that breaks my previous all-time low, which was 5 when I still had cancer.

Turns out my crap stomach isn't processing much of ANYTHING. I have to get monthly B-12 shots, I'm on 50,000mg of Vitamin D (an insane amount if you ask me) and now I need the infusion of iron. Oh, and my calcium is low, but I haven't completed all the tests to find out how low and therefore what to do about it. Baby steps. Exactly how to people who have had by-passes live? I guess they have the same issues, its just not publicized. Just sometimes I feel like its only me.

Most importantly, I'm feeling okay, just tired and cold. Both are expected when you're anemic (which I am). I never take my coat off at work. My fingers are like ice right now....

I'm in good spirits though, and not due for a CT scan until late summer, so if they can just get my blood to be in the normal ranges I should be doing okay. :)

The Summer Day by Mary Oliver

2008-04-18T09:47:00.002-04:00

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down into the grass,
how to kneel down in the grass, how to be idle and blessed,
how to stroll through the fields, which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do with your one wild and precious life?

[I really like this poem and thought to share it.]

so many doctors

2008-04-03T14:08:00.003-04:00

I have a handful of doctor's appointments next week, one of them I'm psyched about. I see my lovely oncologist, and there's no CT scan so the worst he'll have to tell me is that my blood is crap. Which I already know it is. The best thing he can tell me is that I'm going to need an iron infusion (please please please) but I doubt I'll be that lucky. Maybe I'll stop taking the iron pill "when I remember" (instead of twice a day--never) so that my odds of the infusion will increase. My mom is afraid to get a cortisone shot in her knee. I can't relate anymore, though I tried. A shot? Who cares about a shot! Who even cares about an infusion! Just don't poison me again, please. :)

The appt I'm excited about is with a physiatrist. Looks like I spelled that wrong, but if I'm getting this right, she's part physical therapist, part physician. That's how she was "sold" to me anyway. She will help me figure out how to exercise without destroying my back (much better, by the way) and with the extreme limitations of my stomach (can't lie flat, can't touch toes, can't be a little tea pot with a handle and a spout, etc etc). I'm excited to meet someone EDUCATED who understands (I read about her, she's a breast cancer survivor) from many different perspectives. Plus, I love almost everyone at Dana Farber so don't feel I can really be steered wrong.

I've also got my lousy annual exam with my PCP. Will be just glad to get it overwith. I always feel like its a waste of time. I meet with an endocrinologist later in the month, to make sure my bones aren't going to turn to chalk (as featured in previous post as worst nightmare). I haven't seen her in 2 years so its a good time to catch up.

I feel like setting up appointments with every other doctor just so I can meet with them all in April. Off the top of my head there are 2 more docs plus my dentist (who I will see after my cleaning in 2 weeks). Sigh....

Feeling well, though tired. Once I pass my lousy financial exam I can go to the neuropsych dept to be tested. I swear I have add. While studying for my exam I have caught myself studying my PENCIL, picking at the lamp shade, looking at my sweatshirt, etc I'm so easily distracted now, its a joke. Process speed sucks, retention is down, recall is crap, but on the up side, my hair has grown back curly, which is kind of cool because it was curly when I was a little girl. A lovely benefit to hair regrowth I didn't think I'd get to be a part of. Yay!

I heart nutritionists

2008-02-20T12:50:00.003-05:00

I am so exited about this… I met with a nutritionist at dana farber today and she has actually dealt with other people who have had my surgery AND she understands exactly what my stomach problems are. BECAUSE--everyone else has these same week-long periods when they “can’t eat”!!

It’s a miracle to know its not just me. You have no idea... its like being told you're not the only human being on earth!!!

Even better is that she has a potential solution—she thinks that the surgery/chemo/stress caused the good bacteria in my stomach to get wrecked by the bad bacteria, and each time I eat its like the fermentation process is happening in my stomach… so if I take this pill (like super-yogurt) it will balance out the bacteria back to how it SHOULD be and she thinks make things much, much better. I am THRILLED!!!! She said there's no way I could possibly eat enough yogurt to balance it out so this pill gives me a leg up. The reason I will actually try this is because its not a "rest of my life" pill, and I can do anything for a few weeks.

Yay!! I'm looking forward to eating again :)

THE SCAR!!!

2008-02-19T18:51:00.004-05:00

I just figured out how to take pictures using this computer... and I look so tired I think this is my most flattering picture. :) My lips have no color!

But really I thought maybe you'd like to see my scar. You don't do you. Sort of? Okay, here you go...and I find it hilarious that the whole thing doesn't fit in the screen (its farther up and farther down). Please ignore the ugly, unflattering belly. Hey, tattoos are too light to show up! This is your last shot as voyeur as I'm never going to wear a bikini and unlikely to become a flasher. Feel no pity, I LOVE my scar...

Mmm vitamins

2008-02-15T16:40:00.004-05:00

So I've got a cool new life-long thing to look forward to, thanks to my crap stomach: monthly vitamin B-12 shots. Poor belly can't figure out how to process food correctly. :) As you can imagine, shots are NOTHING to me, but its annoying that I have to get them from my PCP who is in the office for 5 minutes every other year. Or so it seems. Wish I could get them at Dana Farber. It would make my life SOOO much easier. Sigh. And why do they have to be from my PCP and not a nurse? Can't figure out why this is such a controlled substance. Even Roger Clemens was getting them from a doctor and not his trainer, who seemingly gave him everything else under the sun... oh well. I'm psyched because it should be giving me more energy. Yay! Got my first shot yesterday, so far so good. Not exactly brimming with energy but its been an exhausting week. Frankly, glad its a shot though, because I'm very anti-pill. Should be taking 1000 different things, NOT TAKING ANY OF THEM. Okay, one of them. I'm in misery without protonix (gets rid of acid in stomach) though I take it every other day and should be taking it twice a day. But beriously, I think if I was supposed to be taking a cancer-prevention pill (no, this doesn't exist), I wouldn't do it. HATE HATE HATE pills. You'd be that way too if you were in my shoes. Trust me. I have a pill basket AND a pill-filled shoebox, and if it doesn't make me outright sick, it likely makes me feel crappy. Hey, just like food! I wonder if I would take the Jetson's-style food pill. Probably not. ;)

Oh, back feeling MUCH better. Chiropractor works!

Something Else

2008-01-22T08:53:00.001-05:00

So I've been trying to think of if I should even mention this, because this is my cancer blog. I certainly don't want to become one of those people who list out their ailments. And I'm getting to learn that everyone has their "things." Especially as we get older. (Older!? I'm barely 33!)

But I decided since I'd talked to you already about my back that maybe I'll just make a quick mention... found out friday from the chiropractor that I have oseoarthritis and degenerative disc disease (are these the same thing? don't know, my primary care doctor has told me NOTHING and the reports the chiro was reading came from HER. I have a call in to her already). So I immediately imagine a block of chalk that crumbles when you touch it. In my Nancy Kerrigan moment, I asked the chiropracter "Why do I keep getting old peoples' diseases?" Not my proudest moment, but its sadly how I feel sometimes.

Anyway, its not cancer. And people don't die from oseoarthritis or degenerative disc disease. Wait do they? Well, if they do its when they're very old. Don't contradict me, even if you're right. The good news is that the chiropractic appointments seem to be working for the pain (after only 2, with 10 more to go) and maybe its good that this has been found early so they can do preventative things, like have them put me on Sally Field's Boniva or whatever. I think that's oseoperosis though. How is that different from oseoarthritis? ARGHGHGH. (I had to promise my social worker on Saturday that I wouldn't self-treat by using the internet because I always do more harm than good by getting myself whipped into a paniced frenzy.)

I just made an appt with Dana Farber for next monday so I can ask them order a bone scan. My PCP would probably order it but I'm still mad at her for not telling me about this stuff in the first place. I'd rather not be like "you suck" and then "hey, can you do this for me?"

So should I start a new blog, "Jenny's Spine"? :)

Ah, memories

2008-01-18T15:38:00.001-05:00

I have been having the best time reading over "Cancer! 2005" from August. Chemo erased a lot of stuff and I'm reading this the same way YOU would read it... "seriously, that's what happened?" about my esophagogasterectomy.

And of course, the famous picture of my stapled stomach. You know, honestly, I would never, ever ever EVER have that scar removed. I never put "scar removal" cream on it (yeah, like that garbage works anyway) and kind of look at it as a battle scar. I like it!

Anyway, I'm off to another chiropractor appointment today. My doc is the same one the NE Patriots go to. How cool is that? Maybe I'll run into Tom Brady. I'll pass along your regards...

All Clear Horn

2007-12-05T10:10:00.001-05:00

I just talked with my radiation oncologist and I feel pretty comfortable with his assessment: everything looks okay. Phew! He looked at the 3 MRIs and the CT scan done yesterday and then went and talked with the radiology group so I really can't ask for anything more thorough. I really do think whatever the heck they were seeing on my back is just a fluke even though it did show up twice. I can dwell on it or I can just let it go... and I've decided to let it go. :)
I also think if he saw OTHER evidence of cancer on my CT he would have mentioned it, so likely everything on that front is okay too. I see my chemo oncologist next tuesday. Its kind of nice getting a preview, that's a very nerve-wracking appointment as you can imagine. Guess I'll live to see another day or two! :) Thanks so much for checking in on me, and bearing with me through the panic...

Residents are Evil

2007-12-02T17:55:00.000-05:00

So here's the latest as of 2 days ago.... talked with my primary doctor. Oh, backtrack.... in order to get in to SEE a doctor when I first hurt my back 3 weeks ago, I had to actually switch PCPs. The guy who could see me is a resident reporting to my PCP (Dr. Schneider is also the medical director of the hospital branch). So I've been dealing with a resident through all this. Sure, he's probably a smart guy, but I'll bet I'm the first young cancer patient he's dealt with. So anyway, he doesn't give me a whole lot of confidence. SO, fastforward... I spoke with him on friday, and the results of my 3rd MRI are basically... ready?... whatever it is they saw on the first 2 MRIs is not as clear on this 3rd MRI. My lovely resident thinks we're all done, case closed, problem solved, next patient please. I don't know about you, but whenever you go 2 out of 3 on anything, doesn't the 2 win instead of the 1?? So a THING something something something is showing up on my spine and they're just going to let it go. Yeah, not so much. Seriously, after the 2nd MRI my resident told me "one of the radiologists thinks it could be your body reacting to a cancer, but probably not." !!!!! Oh, that's reassuring! Don't you EVER EVER EVER say that to a cancer survior, stupid!
So I'm going to call Dr. Mamon tomorrow, my radiation oncologist, because I both trust him and love his deep soothing voice. I'm not even sure if I'll hear what he's saying to me, but at least I'll be relaxed. :) He's the head of radiation oncology at Brigham & Women's so I do trust him completely. He told me this past spring when I saw him that it was "time for me to start putting it all behind me." Such a nice concept. A lovely, completely impossible, concept.
Anyway, the good news is that my back pain itself has been better. I just moved some heavy boxes today (carpets being cleaned in my condo on tuesday) so its hurting me right now, but for the most part its an "ignorable" pain. The fact I could even move those boxes is good thing. I think I'm going to suck it up and go to the chiropracter. And yes I'm aware I can't spell that word. :)
My next CT scan is on tuesday (12/4), and I'll see my chemo oncologist the following tuesday. I'm definitely going to talk to him about this thing on my spine. If I get enough people I trust to tell me everythings fine, then I'll let it go.
There's just this line between relaxing and trusting your doctors and being DILIGENT about your health care...just not really sure when I've crossed it, you know?
It snowed for the first time this winter! So pretty... Life is so fragile.

Been awhile

2007-11-26T19:11:00.000-05:00

Hey there-
Thanks for checking in on me. Its been a year since my last post, and as you know, no news is good news. Actually I'm doing okay. Chemobrain is gone, but then so are a lot of memories. I've learned to be patient about it though, because there just isn't much I can do about it.
I approach bald women now, which I would have been afraid to do before. Not all of them, of course, because some wear a 'stay away from me' sign, but I'mespecially talkative with the ones I see at work. I don't even know how I start the conversation, I just do... the last time a woman was nearly crying within a few minutes of talking to me because she's exhausted and everyone is treating her like she's invisible. I told her its because no one knows what to say or do. People panic.
Anyway, I had some back pain recently which lead to a series of MRIs. There's something on my back (unrelated to the pain) that my doctors can't figure out. I'm waiting for results on the 3rd MRI but sort of think everything is okay. I mean, I think if it was cancer it would be obvious. This... well, this they can't figure. But otherwise I'm doing well. Gainfully employed. And except for the ever-present "livestrong" bracelet, I'll bet people never suspect a thing...

Port-a-cath

2006-12-07T19:10:00.000-05:00

I'm having my port-a-cath taken out next friday. If you don't know what this is (and believe me, you have no reason to know) its this lovely device implanted under the muscle at the top of my chest, near my left shoulder. It was put there, not because I needed chemotherapy, but because this time last year I had chemotherapy 24/7. For 5 or 6 lovely weeks I had a pump that I slept/bathed/talked/ate/lived with. The port-a-cath enables nurses to put a needle into an area the size of a quarter (and I have 2 "ports") and be almost guaranteed they will be able to draw blood. The port-a-cath has tubes leading directly into one of my veins. I've gotten over the grossness of that concept. Honestly, I think I'll miss the little guy. It always made me feel just a little more of the "in crowd" at Dana Farber. "What, you have chemo in your arm? Childs-play." You see someone with a needle in their chest, that's hard-core. And if they used the cold spray and I inhaled as the needle went it, it really didn't hurt all that much.
I think my doctor sensed my hesitation with having it removed. "We can put it back in quite easily." Yes, well, that will mean I have cancer again, so that's not such a great way to put it.
I'm doing well but FREEZING. I don't remember being this cold this early in the season. I'm not going to make it through January. I have a usually warm, thick quilt on my bed PLUS a down comforter. And this is in my old room at my parents house, where my room gets the heat first, and used to be so warm in the winter I couldn't even use flannel sheets. I freeze at work. I've put my coat on at my desk several times. The sweaters I'm wearing don't seem to be thick enough.
I found out my vitamin D levels are crazy-low so I'm taking supplements. Did I mention that already? You know, I used to have a rock-solid memory. Really, it was one of the few things I truly loved about "being me". I can't remember crap. My mother mentioned we bought new christmas lights last year. I was with her when she bought them. NO memory whatsoever. I'm sort of getting used to this new shoddy mind. I'm learning to take it easy, but its hard. I used to be able to tell you what a person was wearing last time we had lunch, not just what we talked about. All gone. Now I can't remember either thing. I wish they'd include me in some of their studies for chemobrain.

Crazy people

2006-11-24T15:22:00.000-05:00

Besides the insanity, here's something else I have in common with Napoleon:

"In 1961, a flurry of conspiracy theories were launched when high levels of arsenic were found in hair samples taken posthumously from Napoleon. But a manuscript
discovered in 2005 supports the official medical report from 1821 that he died from stomach cancer."

Another All Clear

2006-11-18T23:24:00.000-05:00

I got another all-clear (phew) and though I return to the doctor in 3 months, I won't get another CT scan for 6 months. I don't really see the point of seeing the doctor in 3 months without another CT scan, though. I really don't. Seems like a waste of time.
Oh, I'd forgotten when I had the scan that I signed up for a study. I always sign up for anything they ask me to, just as a matter of course. I figure if I can help someone else, I'm happy to do it. So they scan you once, then inject you with some kind of dye, and then they scan you again. Well, they were studying whether they should change the type of dye to the same kind used at Brigham & Womens. That was were I'd had my first CT scan, so I knew either way I wasn't going to have a reaction (I always feel sucky, but neither one was terribly bad). ANYWAY, so when I signed up I agreed to a phone call to talk to the doctor about any side effects.
Fast forward from monday to friday, where I've forgotten all about this, and I get a call at work. I can tell by the number its someone at Dana Farber, and so before I've even picked up the phone I'm leery. THEN the person identifies themselves as a doctor from the radiology department at Dana Farber. I think I stopped breathing. If I'd been a cat, I'd have lost a few of my 9 lives. Even knowing this isn't how you find out your cancer has come back, it still scared me to the point that I TOLD the doctor he'd scared the shit out of me. "Do you know how I am now?" "Yes, I do doctor, I'm sorry..." GOOD times.
Fabian, my rogue lymph node, is still in place. Thankfully he hasn't moved or enlarged at all. I was surprised to learn that its near my liver though, because last time I was told it was near my surgery site. I kind of think my new oncologist got it wrong. He's very close to me in age, but acts a good 30 years older.
My blood is really in good shape now. I've squeaked into normal range on the important markers, and though I'm still "extremely low" in some things, they're not as critical. Oddly, my white blood cells are still low, which doesn't make much sense. The size of my blood cells are teeny tiny.
Anyway... I'm doing pretty well and AMAZED at how far I've come. Thank you for checking in on me. :)

CT Scan Time

2006-11-01T19:27:00.000-05:00

I've got another CT scan coming up on monday. Not too nervous about it. I've been going every week for the past few months to get a shot and often an infusion of iron. I'm really noticing a difference. I had a busy day at work, for example, and I'm not asleep right now. I can definitely do more than before. I love that I'm starting to think of things to do with my free time, and cleaning my condo doesn't seem insurmountable. well, I take that back, it still seems insurmountable, but I no longer feel I should move as a result. Yes, I'm still living with my parents. I was sick over the weekend and dissolved into tears on the bathroom floor. My mom came into the room and gave me a hug, then brought me into my room, changed the sheets, lifted the mattress up (it always slips down because I have an inflatable pillow under the head of the mattress) and then she made me some tea and gave me some oyster crackers (sweet old friend). I think I'd just have sat on the floor crying all night had I been alone at my condo. Some of it is definitely feeling sorry for myself. I do know that I do it, and its because I felt sorry for myself all the time last year. But some of it is also just feeling shitty sometimes.
My nurse told me last week that I'm not the only one out there with terrible blood. "It hasn't even been a year since you've been off treatment," she told me. "Your blood will be bad for awhile longer." Basically, think of how incredible it is that the body can repair itself after being poisoned. I need a little bit more help than maybe the typical patient, but I think a big part of that is because there aren't a whole lot of survivors out there with stomach cancer. 50% don't make it. How do you like THOSE odds? I never felt I had a 50/50 chance, but those are the stats.
I'm getting a new medical oncologist. Fortunately, not a new radiation oncologist. I only see my radiation oncologist twice a year but I have a patient crush on him. :) Much of it might be his voice, but whatever the case, I get to see him next month. But as for my medical oncologist, I see him in 2 weeks to go over my CT scan results. It will be interesting to see how a new person steps into my medical circle. I have a billion nurses and several doctors, and they all manage different things, but it leads up to my medical oncologist. The one thats leaving at the end of this week, Dr. Bhargava, should never have let me return to work as soon as I did. True, it didn't do any damage, but I should have given myself more time. I think it might have been good for me mentally, but physically it wasn't good.
ANYWAY, I'm doing better now. I'm not as nervous about my CT scan (like, maybe things will be okay).

Doing okay

2006-10-12T20:48:00.000-04:00

Ugh, I fell off the earth again. Sorry. See, I spend all day on a computer at work, the idea of going on the computer again at night is just not appealing. I had a bad day but over all I'd say I'm doing quite well. I've been getting weekly procrit shots to stimulate my bone marrow into red blood cell production and I've been getting weekly IV transfusions of iron. Today was the third one. I'm almost in the range of normal! Its taken over a year but I'm almost there. :) I think my basic problem now is us dealing with my miserable stomach. As I said, we didn't have a good day today, but I'm find I have to sit it out and can't leave work just because I feel awful for a few hours.
I know I'm doing better because I'm starting to find interest in things, like my beloved cooking classes. I can't take them yet, but I'm thinking about it, and planning that maybe in a few more months I'll be able to go back. And maybe I can take some adult education classes. I can't do anything after work yet, including work (I leave right at 5) but eventually I'll be able to do things. I'm starting to see the light at the end of the tunnel!
I have another CT scan coming up in a couple of weeks. I might not be as convinced that THIS TIME its going to come back positive. I'm beginning to relax a little. Which isnt to say that I don't believe I'll get cancer again. I still believe it. But maybe it won't be THIS month. Maybe I don't have it NOW.
You know what? It doesn't feel like my life is as much ON HOLD as it has been. I feel more like part of the working community, even as I still feel 100% at home at Dana Farber. And I know I don't do well at work on the days I go to Dana Farber because everything is so inconsequential to me. But I should be okay tomorrow. After all, it'll be friday.

Complaint Alert

2006-09-04T20:37:00.000-04:00

I had a mopey day today. My mom helped me strip and make my bed before my nap and I started crying. Its usually a key that I'm dehydrated but I think I'm doing okay (I got fluids on thursday). Its just difficult to always have something wrong with me. I suppose I'll never be "normal" again, and when I think of that, its kind of depressing.

I was reading a great book by Ruth Reichl as she described what it was like to be a NYTimes food critic. How I'd love that job. But I couldn't, because I could never eat all the food required to evaluate. I intend to go back to Johnson & Wales next year to resume my culinary classes (I'll have to get a whole new chef's uniform, the old one won't fit anymore!) and I'd love to go now but I couldn't do it. I want to sign up with my friends for a wine tasting class after work but I don't know if I can pull it off. I feel like I'm barely at work because I'm always leaving early feeling shitty, or leaving to go to Dana Farber. My stomach hurts the entire time. And when it starts to feel good, its time to eat again. And today, I just started to cry about it. It's very "poor me" and ridiculous because so many people are sooo much worse off. Its hard to be sick and tired all the time. ALL THE TIME. FOR A YEAR, PEOPLE. I'm having trouble getting things done. You noticed above that I can't make my bed on my own. Well, that's why I'm still with my parents.

Can you go home and do grocery shopping and vaccuum and do your laundry and... "No." That's why I'm not back in my condo yet. I can't do any of those things. If I wasn't anemic I might feel better. If I just had chemo fatigue to deal with, I'd probably be able to fight more, but I just really honestly can't.

And I walked into Target tonight rubbing my stomach without even realizing it until my mom pointed it out. I know pregnant ladies absent-mindedly rub their bellies, but it looks pretty ridiculous on me.

I guess I'm having a hard time adjusting to the new normal. Working full time is really hard for me, and I feel like a lousy employee, as I'm always leaving or late for one health reason or another. Eating hurts, I'm physically exhausted... and then I have to deal with life. Bills, problems, etc just like everyone else. My job has become very customer service where the lawyers complain about the clients and the clients complain about the lawyers and I have to listen to everyone bitch and I DON'T CARE. Its all so insignificant. You know, you're bitching to me about a font? Who the F do you think you are? There are people in Dana Farber a few blocks from here DYING and you're pissed about a font? And you want me to do something about it? I DON'T CARE. My bosses say I'm too nice to the clients who bitch, but I won't admit to them its just to keep me from killing the clients outright...

blood shots

2006-08-25T18:49:00.000-04:00

Holy crap. I haven't signed on in so long I almost forgot my id and password...

So, I learned this earlier in the week: "The actual cause of stomach cancer is unknown. However, people with blood type A and a history of pernicious anemia are at a greater risk of developing this cancer."

Guess who's type A with anemia! Okay, I looked up pernicious and didn't retain what I learned, but still. interesting.

Here's what I want cancer patients to understand more than anything else: (1) don't listen to your doctors when they tell you you can go back to work. Because they really don't know. My oncologist and nurse both thought I was going to stay out of work until the fall. Even though my oncologist cleared me to go back to work, he was surprised I'm full time. D'oh! (2) don't let your doctors ignore you just because you're done with treatment. (3) just because you're done with treatment doesn't mean you're all set.

I'm still anemic, and now I'm getting weekly red blood boosters for the next 6 weeks. I was on a liquid iron supplement which made me sick and therefore dehydrated so I had to get fluids yesterday. Joy. It's taken a bit of fighting to get them to fix my blood. I'm anemic which makes you tired anyway, and then I have chemo/radiation fatigue which makes it hard to do anything. GOD I'm tired.

And the 15th was my 1 year surgery date. A year ago I was in some serious pain. I was home, but not sleeping.

Aside from the blood/fatigue thing I'm doing well though. The chemobrain seems to be really cleared up now. I can count on my memory again, though I don't push it. And I'm taking it easy at work. Lots of aimless internet breaks to keep my stress level really low.

Thanks for checking in on me! :)

Needham!

2006-08-07T18:48:00.000-04:00

I had a CT scan last week and the results came back today-- everything okay. Nothing changed, not even Fabian (the annoying enlarged lymph node). I am amemic, though. And worse, dehydrated.
I've been making really bad decisions lately, and been EXHAUSTED which should have been obvious things, but they weren't. I've had awful cramping and reflux and NEVER using the bathroom... I went to my gastroenterologist on friday and she said "think of your body like the big dig: one thing shuts down and the whole thing follows." LOVELY.
Anyway, so she said it was dehydtration- I went to my oncologist today and asked for fluids- I got 2 bags, which takes about an hour each, though they spread it out today, and I have no desire to use the restroom. I was even drinking while I was there. Yup. Dehydrated.
Oh, you want to hear about my bad decisions, don't you. FINE. So today, I got on the shuttle bus to the wrong hospital. And last week, I got on the wrong train. Easy mistake, maybe. But it goes like this.
You're waiting for the Stoughton train.
The conductor says "Needham!" and your brain says, "That's your train!"
I was on the train about 5 minute and would have ended up in Needham had the conductor not said "This is not the Stoughton train."
Slowly my brain says, "Wait, that's the train we want to be on. This must not be our train..."
Stupid brain!
My oncologist, who cleared me to go back to work full time--in writing--was genuinely surprised that I'm back to work full time. "So, you worked 3 months part time, right?" "Ah, no, it was a month." I told him I'm really, really tired, and he said "Well, yes, you're working full time." ARRGHGHGH.
I saw my chemotherapy nurse, who has been out on maternity leave though, and it was great to talk to her. She said the effects of chemo hit your body six months to a year after the last treatment. A-HA! So that definitely explains some of my mistakes. I'm better and better all the time, but still expect myself to be 100% (I know, I've been saying this for months!)
Anyway, I think I'm conducting myself well at work. I seem to save my big mistakes for non-work things, which I suppose is a good thing. But if you get a random call from New Jersey from me asking for a ride, you'll know something went haywire again. :)

1 year

2006-07-25T03:38:00.000-04:00

We quietly passed my one-year since diagnosis, which was July 22nd. I didn't celebrate, but definitely marked the occasion. It both feels like it just happened, and also like its always been this way. I had a doctor say to me yesterday, "This was probably your toughest year, huh?" Well, yes, unless you count that year I had a really hard trigonometry test.

There's a 16 year old in the news right now who decided he doesn't want to go through chemotherapy anymore, but the courts are forcing him. I think it must be because the judge in his case sees enough reason for him to go through treatments. Like, maybe doctors have good reason that he'd survive. I can understand some people who have been through years and years of treatments who decide they just don't want to continue anymore. But this kid was diagnosed last year, and said he doesn't want to continue because he would throw up and didn't feel well. Um... So instead he's eating organically. That's just great. The kid is going to Mexico for his treatments. Because if I had my cancer return, I'd also go to a 3rd world country and reject years of scientific discovery. Look, there's constant nausea. Sometimes you don't think you can continue. You throw up, you have diahrreah, you're weak, you can't think straight. But you do it, just like every other patient, because its your best bet for survival.

I have a CT scan next week, then see my oncologist the following week. I also have an appointment with my gastroenterologist because I've been getting lots of pain when I eat. I'm guessing something isn't quite right and hopefully there's some kind of drug that can fix it. It really sucks to want to curl into the fetal position at work. "How are you?" "Great! owwwwww..."

So this week is my 2nd week going full-time. Its not been easy. I am really tired mid-afternoon. I don't take a lunch break away from my desk because I'm afraid I won't have the energy to continue the day. But it makes for a REALLY long day. About 2:30-3:00 I've really had it. I was able to go off my sleeping meds I have been on for a LONG time, but obviously I should probably go back on them again (it's 3:30am). I just tossed and turned and finally got up. Hopefully now that I have 2-1/2 hrs left before I have to get up again I can get some kind of sleep...

first full day

2006-07-17T22:27:00.000-04:00

I had my first full day today. I didn't take a lunch hour and left at 3:45, so it was not really a full day. I bailed because I was a little tired and I honestly have NO IDEA how I'm going to work 9-5 later in the week.
In fact, I'm tired now so this is going to be super-short. I just wanted to say thanks to all of you for your amazing support which continues to this day. I imagined once I was back to work it would all fall away, but you--my friends and family--continue to support me (and they're being really amazing at work, letting me call the shots on my schedule).
So, another full day tomorrow... probably another 3:45 departure. Maybe I should feel guilty (and I do a little) but not as much as I should.
And FYI I'm still living with the parents, but I just had my kitchen renovated last week so my kitchen stuff is in my living room and besides, the condo hasn't been cleaned in a year. These things take time...

Do You Garden?

2006-07-14T21:22:00.000-04:00

We're coming up on my 1 year cancer diagnosis anniversary. Maybe I shouldn't celebrate, but its a day I'll never forget. I even remember I was wearing a black top and tan pants. It was sunny but not really hot. My appointment was at 2:00.

I was listening to the radio in the car with my mom this afternoon and they were doing a fund drive for children's hospital. I would never have listened to the stories except I didn't want to be rude and change the channel. I felt myself getting more and more upset as I listened to these poor kids talk about their struggles. "Yeah, this is what I went through" not feeling sorry for themselves, just being matter-of-fact about it. And though they were dealing with tumors and leukemia, things I haven't been through, I just felt so connected to them. My God, I know how they feel. Mom changed the channel just as I was about to burst into tears.

But on an up-note I started reading a fantastic book. It's a memoir in comics, right up my lane. It's called "Cancer made me a shallower person" which is such a smart-ass title I really needed to get this book. It is so perfect for me to read right now. The author is describing her trial with breast cancer, which I can't completely relate to, but I did just have a couple of laugh-out-loud moments with the book:

1. "Now I needed to figure out the etiquette of cancer announcements in the workplace (Miriam Engelberg cordially invites you to join her in reacting to her new CANCER diagnosis. Please, no gifts). Two months earlier a coworker had been diagnosed with cervical cancer. She was a consultant, so she opted to meet with staff members in small groups (Project Timeline: Surgery, Path Report, Radiation; Next I'd like to go around and hear each of your reactions). I wasn't the small group type so I decided to just sendout an email (To: All staff. From: Miriam. Subject: I have Breast Cancer. Also, the new intro to excel manual is finished)."
-->Some of you might remember my group email. It was the only thing I could think of! The first people I told even got the interrupted email where my blackberry sent it out before I was finished writing. That was a good one! I hadn't gotten to the part of mentioning I had cancer.

2. "I've always wanted to be one of those non-self-revealing type people... (Oh, wow! There's that woman who never talks. She's so mysterious and alluring!)"
--> Many of you may find it hard to believe I almost never talk at my current job. Really. I never get in trouble anymore for laughing too loud.
"...So I tried to restrain my tell-all tendencies (Uh-oh, here comes that woman who works at the corner store. Ok-you can do this. Just smile and say "hi"). I was not successful. (Hi, how are you? --I HAVE BREAST CANCER!) I figured I should just give up any pretense of restraint and announce it publicly. (Hello, you're on "Car Talk.")"
-->Oh, that one got me laughing! At the time, I really wanted to find a way so that everyone knew immediately that I had cancer without me having to tell them. In the same way that you can identify I'm a female with brown hair. You'd just know. I was willing to wear a shirt saying "I have cancer" if necessary. I just love the idea of calling car talk. Its a really good thing I didn't think of that back then because I just might have done it.

Anyway, I think I'm going to enjoy this book because she's very honest, sarcastic, and not at all touchy-feely. Those "smile and bear it" books and stories are just too much. They're unreadable for cancer patients and just make everyone else feel like lesser people. Right now I'm in a part of the book where she's convinced it was cheese that gave her cancer, and someone in her support group thinks it was oil painting.

I was in a class tuesday where one woman mentioned to a friend that someone she knew had breast cancer, and the second woman actually asked "Well, did she garden?" I was so dumb-struck I never did learn if gardening was a good thing or a bad thing.

Don't be stupid, you shouldn't be gardening! There are bugs out there, bugs and dirt that give you cancer!

What, you don't garden? It's the only way to AVOID cancer, stupid!

I'm thinking, well, I have gardened in the past, but I didn't really like it...

Bad Idea

2006-07-07T18:53:00.000-04:00

I had my port-a-cath flushed yesterday, which you have to do monthly if you're not getting treatment or blood tests. I've had this thing accessed a billion times. Its a double port implanted just below the skin of my left shoulder. You can easily get blood or give meds through this port and get it right into a vein without having to jab my arm. So basically its a good thing, except I don't need it anymore (yay!). I have to wait until after my next CT scan (last week of July) and then if all goes well I can schedule an appointment to have it taken out.
But as I was saying, I had it flushed yesterday, where they put a needle into each of the two ports, push saline and something else (heparin?) through it to clean out the tubing, and then I'm good to go.
I got this genius idea that I wouldn't have the nurse use the numbing spray. I've always, always used the numbing spray. The thing is, they switched to a new company and the numbing spray literally freezes the skin. And it kind of hurts. So I thought, its going to hurt either way, I might as well not use the spray. HOLY SHIT. That was a really, really bad idea. Ever watch someone stab you in the chest and feel like someone's stabbing you in the chest? I'm obviously a big baby, but we are talking all the layers of skin, I don't know why I didn't think it would hurt when she put a needle in me. I watched in horror when the first one went in. Oh, mistake! I've made a mistake! And then the second needle. OW!!!!!
And then it hurt when I was walking so I put my hand over it until I realized I must look like a complete freak (look, she's pledging allegiance to the flag). Its fine now, a day later, but I can promise you one thing, I'll never make that mistake again!

Physically stronger

2006-07-02T22:29:00.000-04:00

I went to my brother's Ranger graduation over the weekend, and it was probably the busiest I've been in a year. On Thursday I worked half the day, got myself to the airport, sat next to a guy who wouldn't stop talking so I couldn't sleep, had a connecting flight (which I missed), had a complete freak sitting next to me so I wouldn't dare sleep, and got into Atlanta at 9:30. And then I had to rent a car and drive 100 miles to the hotel west of no-one-goes-there-Georgia. But I did it!
I feel like I really accomplished something too. I need to prove to myself sometimes that I'm okay. I can do these things which I used to take for granted but now seem almost impossible.
While I'm mentally still off, I really think physically I can handle things. My body amazed me during cancer treatment with its ability to put up with more than my brain thought we could deal with... and its surprising me again by having actually paid attention to my physical therapy and gym visits by getting stronger! Now if only my brain would wake up...

D'oh

2006-06-26T11:41:00.000-04:00

I couldn't remember the word "tablecloth" yesterday. (sigh)

Nap Time

2006-06-23T07:05:00.000-04:00

I spend most of my time at work appologizing. Seriously, I continuously forget things. And I found my ability to write professional copy is GONE. I could not write a little introduction to a glossary. Its really frustrating.

I met with my radiology oncologist yesterday for my first 6-month exam. I was able to talk to him about being tired--STILL--and he said it wasn't uncommon. "You've been through a lot." I guess when I hear it from doctors I believe it a bit more than when non-doctors tell me. I figure these doctors see a whole range of patients and if they put ME into the "been through a lot" catergory then it must be true. Sometimes I wonder if I'm just being a wimp.

You know, do I *really* need a nap every day? Well, yes, I really do. When I skip them I can't function well the next day. But then, maybe I've always needed an afternoon nap. I remember taking them when I was in college as a freshman and sophomore, before I was working full-time. But this feels more than "gosh, I'd like a nap". More like, "holy crap, if I don't sleep soon I'm going to collapse". And my doctor said that's okay, so I guess it is.

I'd really like to be able to pinpoint a date when I'll be 100% and all my doctors tell me its impossible. They all give me the same advice--just look back a month and be able to say "I'm better now". And I've been able to say that so... I guess that's all I get.

When is my brain function coming back? Its hard to feel like an idiot at work. I want to wear a sign "I wasn't always stupid". Doctors promise me it isn't permanent. I think other cancer patients hide it better. I remember some things and can perform adequately at work, but by no means am I performing up to my baseline standards.

And you know what? Everyone else has more patience with me....THAN me.

Working Girl

2006-06-19T19:11:00.000-04:00

I think I did well in my first week back to work. I was completely exhausted friday and had to leave early but part of that is because I didn't take a nap the day before *and* I drove into work. I wanted to have my car with me because I had a doctor's appt at Dana Farber and it just made complete sense at the time. But at 11:00am I was staring into space and couldn't focus on my work, little as there was for me to do. And I still had this long day of lunch with Carrie, then Bus transit over to the Farber, then wait for the doctor, doctor's appt, and home by about 4:00. And by 11:00 I could NOT see how it was going to work.
It didn't. I was home by 1pm and nearly fell asleep eating lunch. I took a nap and woke up at 5:30.
I had a good day today, though. I didn't take a nap this afternoon though I rested (VERY important). I goofed up some dates during some practice emails with my co-worker Cori Leigh, who did my job while I was gone... things I know are chemobrain-related and so I let them go. "Normal Jen" would never make such mistakes. My face would have flushed flame red, and I'd have been humilated and embarassed. "How could I be so careless? How could I have..." Yeah, not so much. Now I can say "Oh yeah, I didn't do that right" and move on. I got very used to being rather stupid this past winter so I have to be able to shake things off quickly.
Anyway, my 9-1pm schedule is working out really well. It will suck when it comes to payday, but in the meantime its good for my health. I'm really very tired when I get home between 2:30 and 3:00 and I think I'm going to try to stick with this schedule for a few more weeks. Maybe mid-July. I'd like to be able to go a full week without needing naps each afternoon. I mean, is that so much to ask? :)

Back to Work

2006-06-10T11:36:00.000-04:00

My first (half)day back to work went well. I hid most of the day in my new cube, a very good place to hide as the legal group is nicely segregated from the rest of the floor. I don't really know why I wanted to hide, but its just the feeling I got when I was there. Like overexposure. I'd have gone under the desk if it was socially acceptable.
I met with my new boss who seemed very willing to let me set my own schedule and gradually fit myself back into work. I spent most of the morning unpacking my boxes and throwing things away. My own cryptic notes primarily. Things I'd saved to CYA. Or I guess that's CMA.
I was getting tired at noon (staring into space) but told them I'd stay until 1pm, which I did. I took a lovely nap when I got home. I'm going to try the 9-1 schedule everyday for a little while because I don't even know what I can do yet. But everyone has said I should NOT return full-time, including my doctor. So I'm listening!
It was very strange to be back because so much has changed. Not just that my role is different now, in a different cube with a different boss in a different department, but the whole company has evolved and a billion more people have been hired. And there's no way to catch up on a year except to "let it happen" because there's nothing to read or research to get myself there faster.
Anyway, my first project is to update a marketing manual, which I wrote last year. How do you update something when you don't know what's changed? I guess that's my challenge!

Work tomorrow

2006-06-08T22:16:00.000-04:00

I met with my oncologist yesterday. We had a misunderstanding- I thought I was getting my "return to work" letter from him, and he didn't know he was giving it to me yet. So its in the mail. I'm to return to work tomorrow without a return to work release from my doctor! I have a meeting with my (new) boss but I don't expect they'll let me do much as H.R. would have a fit.

Anyway, the news from my oncologist was otherwise good. He was able to see the results of my endoscopy and colonoscopy and everything came out great. No problems, just some irritations in my stomach (inflammation) which doesn't surprise me at all. I still wake up at night feeling like I'm choking, when really its trapped gas. There are weird things going on down there.

My gastroenterologist called me today and repeated what my oncologist said, and added--get this-- I do NOT have Celiac's disease! It turns out the kind of test they did last year gives false positives and with the cancer diagnosis they weren't in any rush to do additional testing. It would have been nice if for no other reason than I could have eaten normal food while in the hospital. I had to eat rice crackers, which are soft as concrete, and the last thing you should serve someone recovering from stomach and esophageal surgery. Why don't you just punch me in the gut while you're at it?

Anyway, I'm on the computer now (at 10:20pm) to find out the train schedule for getting into the city tomorrow. It has been a long, long time since I have been on the train! I plan to go in for 9:00 but don't expect I'll be in there much past noon. I was going to try to stay a whole day but I went back to sleep today at 11:00am and woke up at 3pm. And I'm sleeping really well at night too, its not like I'm up at 3:00am wandering around. But it's only 5 months since radiation stopped, and 3 months since chemotherapy stopped, so fatigue and chemobrain are not crazy-out-of-the-question symptoms right now.

I have my next CT scan scheduled for late July, and should be able to have my port-a-cath taken out sometime afterwards. Probably late September.

So the real news is that the cancer is gone, which I'm starting to maybe believe. I still worry about the rogue lymph node (Fabian) but not as much. I just find it extremely hard to believe things are well and truly behind me. You know what I mean?

Just Breathe

2006-06-02T20:18:00.000-04:00

So I woke up at the end of my endoscopy, choking of course. And they tell me "Just breathe." Oh, like its so easy. There's a tube leading into my small intestine, why SHOULDN'T I be having a difficult time. But they obviously increased my drugs and put me back under.

Unfortunately, I woke up again during the colonoscopy. And I was wide awake. I told them as much and they weren't concerned. HELLO, AWAKE OVER HERE! And I can see everything on the tv monitor the doctor is watching. Hey, what about that thing, was that a hole in my intestine? Hey, did that look weird to you? Wait, go back, what was that?

It's really not a horrible thing, for all those people my age and even older who have never had one. I mean, its not FUN but its not as bad as you might think. Endoscopy is far worse, and I think I've had 4 or 5 by now.

Anyway, the doctor said things look okay, both in my intestines and my stomach. She said that young adults with onset stomach cancer often end up with colon cancer, so I'll have to repeat the procedure every 3-5 years. The worst part was actually getting the IV in. The nurse talked big, like she was capable of using my port-a-cath. I told her I didn't mind if she just used my arm, and whatever was easier. It took this woman three tries to find a vein, and my veins are VERY easy to find. She wouldn't go in my arm where they usually go, but wanted to go in my wrist, top of my hand, etc etc. Each time she had to use anesthesia which burned like hell. It made novacane seem great in comparison.

So anyway, I have to wait until the 16th for my official results, but things seem like they're going to be okay. Its nice to leave the endoscopy area with good news! What a difference a year makes....

Magnesium Citrate

2006-05-31T14:52:00.000-04:00

I'm drinking delicious (yeah right) Magnesium Citrate in order to prepare for tomorrow's endoscopy/colonoscopy. This stuff is somehow more lemony than a lemon. And its a little effervesent, which I could do without.
I had the pre-op appointment this morning, which was no big deal. I probably had five of them last year, so I knew exactly what they were going to ask me (full medical history). I have the procedure tomorrow at 1pm, and it should be no big deal since I'll be KNOCKED OUT. I won't have results for two more weeks, but I suppose if they REALLY find something, they'll call.
I'm preparing myself mentally to go back to work a week from friday. I still have a bit of chemobrain and one doctor explained to me that it may last about a year (!!!). I improve by leaps and bounds each month, but I can tell I'm just not 100% yet.
I'm tired as can be after the appointment and mowing the lawn, then I had to go buy this citrate stuff. Maybe its not such a great idea to drink it right before a nap, but that's the plan! I'm on all clear liquids today too. I should have been yesterday but I goofed at every meal. I had chicken noodle soup for lunch today, which I probably shouldn't have had-- plain broth would have been more appropriate. But I'm ready with jello for dinner and I'm trying to drink a lot so hopefully everything will be fine.
I went swimming this weekend while in Wisconsin for a wedding-- it really hurt my stomach. That or my bathingsuit hurt (it's new). One of the two made me feel pretty ill. I hope this doesn't mean I can't swim, you know. I didn't really SWIM either, I just kind of bobbed around in the water. But the water pressure seemed to get to me.
Oh, I always make fun of Wis. TV news, and I saw this on sunday night: "The Emergency Agencies have announced an AMBER alert for monday morning from 7:20 to 7:33 for the following counties..." Just exactly how do you predict an Amber alert for the following morning? Sounds like someone is fixin' to do a kidnapping....

Jennews

2006-05-23T21:58:00.000-04:00

I had my final personal training appointment yesterday. It seems I'm doing pretty well, since he increased the weight on everything (oh god, 12 pound free weights!!). Anyway, I can tell I'm getting stronger just by doing everyday things. Unloading the dishwasher isn't the incredible feat of strength it used to be, and I can open most jars without parental assistance.

I still can't get over needing naps. I really tried not to take one today but fell asleep anyway. Same thing yesterday. At least I don't think I LOOK tired like I did a few months ago. I mean, if I don't take my nap I look tired, but there was a time when I was tired 24/7 and always looked like hell.

I really don't have any huge updates because my days are pretty much the same: wake up, have bowl of cereal, go to the gym, return from gym, have lunch, take nap, have dinner, watch tv, go to bed.

I've got an endoscopy (tube down throat) and a colonoscopy (obvious) next week. It should be lovely. :) They're going to take a billion biopsies to see if things are healing well and to make sure there's nothing a'brewin'. The following week I see my doctor and should be cleared to return to work June 9.

Sleepy Again

2006-05-16T23:31:00.000-04:00

I was completely exhausted last week. I did almost nothing and managed to go to the gym only once. I was discouraged until my friend Ellen at the cross stitch store told me that the chemo is still in my body and will occasionally do weird things to me. I didn't realize it could still affect me, but apparently so. I was in a class with her tuesday evening and was holding the cloth a few inches from my face, "I'm going blind, why can't I see this?" Again, she told me it was the chemo. I hate to use it as an excuse, but it makes things make sense. Without the chemo factor, there's no reason for me to have a three-day period when I can't seem to stay awake for more than a few hours at a time.
I mean, one day I woke up at 9 and was back in bed by 10. Really.

I took a nap today too. I can't break myself of them for very long. A day or two and I start crashing at 2:00. I was doing errands this morning and started just counting down the minutes to when I'd be home and could lie down. Once back to work I have to make sure I don't crash THERE because it takes over an hour to get home via walking, train and car.

My beloved Aunt Betty died of lung cancer last week. Its been so hard on her family. She was a wonderful lady and nothing but kind and considerate of me, sending me little gifts even as she herself was getting sick. While my parents were visiting her in the hospital, she kept telling them how great *I* am and how unfair it is that I should have cancer at my young age. I was terrified that she would go through chemotherapy and though I'm incredibly sad she is gone, I'm relieved she was spared the poison. Its just overwhelming.

checking in

2006-05-08T17:00:00.000-04:00

I saw Dan at the gym over the weekend. Finally, someone who can validate that I'm really going to the gym and I'm moving incredibly woosie weights around. I'm up to 10 lb on the hand-weights though. Whoo! Dan and I were both in the free weight room at one point pushing ourselves to a song that has been inspiring athletes for generations: Neil Young's "Sugar Mountain." Ugh. I think they had their radio tuned to the LAMEST station possible. Just dreadful.

I had a focus group at Dana Farber this morning. I was really surprised to find there were only three of us there (more of a focus interview, really) but that I was the only one who found most info about cancer via the internet. One woman wouldn't look up or read anything, she left it to her youngest daughter. I guess I just always wanted to know that X symptom was "normal" and in order to find out in between doctors visits, the old internet was available.

After I got back from the group I took a three-hour nap. I think this was only the second time I have ever driven into Dana Farber by myself. I remember going once in the fall for fluids. And with a few exceptions, every other time my poor mom was with me. And 99% of the time she drove too. Its such a crappy, stressful drive.

I've been trying to psych myself up for work, but I just can't help imagining what people will say to me. I know most won't know WHAT to say, so they'll avoid me until they have to deal with me. Maybe its not fair to say "most". I try to imagine what I would do in their shoes, and I would be one of the people who would ignore the white elephant in the room for as long as possible for fear of doing or saying the wrong thing.

Anyway, I have to go make some phone calls so I'd better log off. Thanks so much for checking in on me! :)

Nothing Much

2006-05-02T15:01:00.000-04:00

I'm getting better all the time... This morning I had my second of 3 appointments with a personal trainer and I feel that I did quite well. I'm definitely able to push myself, which is a good thing. Oh, and I did something I've always wanted to do but never been able to do... I ate lunch by myself in a restaurant. I know it seems stupid, but its always made me really nervous and though I wanted to be like the other brave people who do it, I just couldn't. Well, I did. Yay! Another barrier down.

I have a focus group meeting at Dana Farber on monday, which should be interesting. I don't even know what its for, except that its clearly cancer-related. I should re-read the letter they sent me so I at least know what I'll be going in for. I think it has to do with how we get information on cancer. A little boring for a 2-hour meeting, but I'm willing to help them out however I can.

I'm starting to get a little nervous about returning to work. I plan to start up next month, but I guess being away for so long... well, I can't help but be a bit frazzled when I think about it. I have no idea what kind of expectations people have for me, or even what I have for myself. I guess I have a few more weeks to get used to the idea, and keep going to the gym so I can at least handle my commute in. Wouldn't it be great to arrive exhausted? "Good morning!... Well, I'm heading home." :)

Gimme a break, doc

2006-04-24T22:39:00.000-04:00

I got the results from last week's CT scan, and Fabian (my enlarged lymph node) is the same as before, but this time my doctor mentioned that my ovaries are "decreasing." What the F?!? First he said "increasing" and mentioned "lesion" but then he said both were decreasing, which was better than increasing. I throw my hands up. My doctor is determined to scare the hell out of me. At least he didn't mention the cysts on my liver this time. I know they're still there, but he didn't point out a size differential or anything. Grrrrrr. Wait, why did he said "lesion" in relation to my ovaries? Honestly--I don't want to know.

I got home from my appointment to find he had called while I was on my way home, and he wanted me to page him. I checked the clock--6:20. I left his office at 5pm and he called me at 6pm. I had a mild heart attack and couldn't say anything, I just looked at my mother. All I could think of was that he misread my CT scan. Then my Aunt Jo or my mother mentioned that not all of my bloodwork was back when I'd seen him, so likely he was calling about my blood. Okay, but that's STILL bad because he's never called me about my blood. Or about anything before.

And when he called me back 10 minutes later (an eternity!) he said my bloodwork had come back with an abnormally low blood sugar count, and unless I was feeling dizzy and lightheaded and just didn't mention it to him, he was planning on letting the lab know they miscalculated something. Relief. Relief. Breathe again...

I talked to him about my overwhelming anxiety and the fact that I'm starting to get insomnia again after a few weeks of normal sleep patterns. He acknowledged that my life is anxiety-filled and with good reason, "you've been through an awful lot" which is the understatement of the year. But its like I've got more anxiety now that I'm feeling better. When I was sick, I didn't have the energy. He gave me a script for ambien. I can join the legions of people eating and driving in their sleep!

I hired an athletic trainer today to get some personal training for a few hours next week. I was caught doing something half-right with a free weight and decided it would be for the best. His parting words to me were "I'll tire you out (which anyone can do, frankly) but I won't kill you." I said, "hey, if chemotherapy didn't kill me, I don't think YOU can." But between you and me, working out for an hour will probably do me in. I already take a nap after working out 1/2 hour or walking for 45 min. And as I told my mother and my doctor, if I could SLEEP AT NIGHT maybe I wouldn't need to take my NAPS!

Well, time to take my night-time pills and hit the hay. My tea is getting cold...

Some updates

2006-04-21T17:35:00.000-04:00

My roommate from the cancer survivors weekend died yesterday. She was so sick, even at the retreat, that once she had to go back to chemo it was just too much for her. I was amazed she was at the weekened because along with everything else, she couldn't walk very well and she couldn't eat. There were times when I would wake up in the middle of the night and look over at her in the other bed and just kind of check to see that she was breathing. I only knew her for a few days, but I could almost sense that she wouldn't make it much longer. I've thought about her a lot today since I found out, and I just know she's in a better place. Her earth-bound suffering was just cruel.

I was emailing one of the guys from the weekend before we knew about Megan, and he told me he was recently hit by a car while he was riding his bicycle. We had an interesting "I am invincible" discussion. Having cancer forces you to look death in the face. And having walked away feels like cheating death. I feel like if God was going to take me anytime soon he had the perfect opportunity and decided its not my time yet. Rafi and I both agreed we think we can go play in traffic now and be perfectly fine. I could announce on plane trips: "It's okay everyone, we're going to be fine because I recently beat cancer."

I put together a little cancer scrapbook yesterday, with quotes from this blog, quotes from famous authors and some cancer humor along with pictures of flowers that I've taken over the past year. I hadn't intended to put anything together, but it was really impressed upon us at the survivors weekend that you need to have something like it. We even had 2 different "book making" arts & crafts clinics. Okay, okay, I'll make the damn book. :) I'm very proud of it and it's not too emotional or long-winded. Just right.

I was discharged (or as I keep saying, "dismissed") from physical therapy last week so I've been walking and going to the gym. You should see me with the free weights. Its all I can do to keep going at some of these exercises. My aunt Jo asked how heavy the weights were. I smiled, "three whole pounds!" I'm not strong enough to do the machines yet. But I can do the ones for legs and hopefully if I keep at it I'll be in good shape to return to work in a month. I still take naps every day, so I'm not sure how much use I'll be, but getting back to routine has to be a good thing.

Genetic Testing

2006-04-15T11:01:00.000-04:00

I had genetic testing yesterday at Dana Farber. I didn't really have high hopes for it, so I'm not really dissapointed that they can't figure out why I got stomach cancer. There are no obvious links between anyone else in my extended family. For example, just because my grandfather had prostate cancer doesn't mean it was inevitable that I would get stomach cancer. There are certain genetic links-- like if you get thyroid cancer you might end up with breast cancer later. They weren't able to make any connections for me, and told me they might never be able to.
I joined their database by signing away my life and giving a few blood samples. They use it for research, obviously, and try to make connections between certain genes and certain types of cancer. And should any links be established in the future, they would contact me. Again, I find this highly unlikely, but you never know.
Stomach cancer is very rare in the United States, and is in fact declining (doctors don't know why) but the type of cancer I had is actually increasing. And doctors don't know why this is either.
I'm going to have another endoscopy in June, but my gastroenterologist said she would take tons of biopsies. I begged to be knocked out and she agreed. Oh, and I'm lucky enough to be scheduled for a colonoscopy at the same time. Wa-hoo! What do I care, I won't be awake anyway. Plus, as she said, if they find anything that will lead them down another path. Hm, no kidding.

Some Writings I Relate To

2006-04-11T01:01:00.000-04:00

Author Unknown, Treatment is Over
My cancer treatment is over for now
Shouldn't I feel exuberant?
Well, I don't
I feel a confusing mixture of feelings:
Fatigued from the ordeal
Anxious about returning to work
Sad that the recovery period has ended
Grateful that I am healthy
Scared that I don't have the energy to perform
Grieving the loss of my uterus and fertility
Outwards, I may appear happy and positive
But inside I am crying
Just getting through took all my strength and courage
And I am left depleted
I now need a vacation to recover from recovering.

Juanita Jones, Illness in the Institute
It was very painful, and it was sad. It was sad to lose a piece of your body—a piece of my body. ….I would just think about it, oh, it was there, now its not. Like, where did it go? I called up my surgeon and said, “What did you do with it?” She said, “well, we froze it.” And I said, “Oh, well, if you were going to throw it away, I’d want it. I was thinking I would have a little burial for it in the backyard. But I just wanted to make sure that they didn’t throw it away.

Arthur Frank, At the Will of the Body
One day my body broke down, forcing me to ask, in fear and frustration, what’s happening to me? Becoming ill is asking that question. The problem is that as soon as the body forces the question upon the mind, the medical profession answers by naming a disease. The answer is useful for practicing medicine, but medicine has its limits.
Medicine has done well with my body, and I am grateful. But doing with the body is only part of what needs to be done for the person. What happens when my body breaks down happens not just to that body but also to my life, which is lived in that body. When the body breaks down, so does the life. Even when medicine can fix the body, that doesn’t always put the life back together again.

Robert F Murphy, The Body Silent
People in good health take their lot, and their bodies, for granted; they can see, hear, eat, make love, and breathe because they have working organs that can do all those things. These organs, and the body itself, are among the foundations upon which we build our sense of who and what we are, and they are the instruments through which we grapple with and create reality. …Illness negates [a] lack of awareness of the body in guiding our thoughts and actions. The body no longer can be taken for granted, implicit and axiomatic, for it has become a problem. It no longer is the subject of unconscious assumption, but the object of conscious thought.

Jennifer Schmidt, The State of Things
The smooth, pale plane of my stomach is now divided by the Atchison and Topeka. My surgical incision scar looks like a railroad track constructed by drunken workmen.
The surgeon called it a “dogs leg cut”, likening it to the crooked hind quarters of a mutt. It stretches from my left side to my right side, dividing me in half like a magicians assistant.
Down the center of my chest are four tiny tattoos—souvenirs from radiation. I’ve been essentially separated into quadrants like graph paper. I’ve been quartered like a chicken.
I asked my surgeon to sign his work but he politely refused. My oncologist called it a “calling card” from Dr. Osteen. Its okay he didn't sign it though. I’m not likely to forget.

Survivor

2006-04-01T21:59:00.000-05:00

I'm actually at the Park Plaza hotel now, nearing the end of the "Survivors Weekend". We're at tower level with free internet access, etc so I thought I'd take a moment to let you know that though I was nervous about coming I had a lot of fun. Its really amazing that we all feel the same way-- ignored. For most of us, this weekend was the first time we'd met someone our age (30-40 year olds). I ate dinner across from a Dana Farber doctor (guest speaker tomorrow) who said that we're about 8% of the population with cancer. 15% is juvenille, 70% is over 65. We're the lost generation.
This is supposed to be the kick off weekend for a greater presence at Dana Farber. We shouldn't be ignored as much, and though we're not getting our own waiting room any time soon, at least they're trying to put together support groups and working groups, etc etc.
We shared our cancer stories today and it was quite emotional. Yesterday was all about without/before cancer, and today was all about CANCER. We joked tonight about cancer "flare-ups" and getting things we want by playing the cancer card. Chemobrain and being unable to read. And get this... Most women were TOLD their periods would stop. I seemed to be the only one in the room who didn't get the memo as it was a shock to me. Too graphic for some of you? Sorry. :) We did a lot of sharing.
Anyway the group is back so I'm off to join. The cruise sets off tomorrow and I hope you all have a wonderful week. I will check back in next monday.
Cheers!

Survivors Weekend

2006-03-31T15:14:00.000-05:00

I have my young adult cancer survivors weekend starting this evening. I'm a little nervous about it, being with complete strangers, but I'm going to do it anyway. Its nice to know pre-cancer Jen would never, never have gone. Post-cancer Jen does't want to go, but can and will. :)

Sunday morning mom and I leave for our cruise. Its been such a trial to get it arranged I'm not even very excited about it. My expectations are quite low so basically anything will impress me at this point.

I had physical therapy again this morning and once I told the trainer I was still sore from two days ago, he went easy on me. My regular PT Judy was making me do reps in the space of 2-3 minutes. My stand-in Chad had me do 10-15 reps. THAT I can do. Except a hip thing where I couldn't get to 10 without pausing to catch my breath. Again with the fifteen pounds, too! I must say the machine I'm on is nothing like one found in a gym. But if it was in a gym it would be covered in cobwebs. One workout on this thing is plenty to convince you not to do it again.

I took a four hour nap today and I'm still tired. Have I mentioned I have to share a hotel room with a stranger for two days? Yeah, like I'm going to sleep. The good news, or maybe bad news, is that they've roomed me with another bad sleeper. SHE doesn't sleep until 5am. I wake up at 3:00 and go back to sleep at about 7:00. It will be like playing tag: "Okay, I'm awake for my shift, you can hit the hay."

PT and Cruise Part II

2006-03-29T17:41:00.000-05:00

I had my second PT appointment today. I'm stronger than last week (the PT repeated the same strength exercises) but my right leg is definitely lousy. The PT points to my operation and the location of my scar. Basically since it's across my whole chest... (confusion)...somehow its impacting my leg-strength. I was working my butt off on one particular machine. I was shaking from exertion (looks like I spelled it wrong) and I came to find out later I was moving 15 pounds. FIFTEEN!!! And with my THIGH, which contains arguably the strongest collection of muscles in the human body. Sure I was fine at the beginning, but after about 30 reps I was ready to quit. As if one can quit physical therapy.

And to further prove I'm weak I could barely carry my EMPTY suitcase from my condo to car and then from car to parents house. Good thing it has wheels. Why the suitcase? Well, mom and I are somehow booked on another cruise after knashing of teeth and cries of "our travel agent should be locked up in a mental hospital". Even if I've learned nothing, I now see its better to do as I've done in the past-- make travel arrangements online.

Anyway, we're now on the Norweigan Cruise Line, on a ship called the "Jewel" which is not quite a year old. We're going to Roatan: Honduras, George Town: Grand Cayman, Ocho Rios: Jamaica, and Great Stirrup Cay: Bahamas. Mom and I just NEED to get away. More importantly, we need things to go our way for a few minutes. My luck HAS to change at some point. I'm getting sick of counting my blessings and starting every sentence with "Well, at least..."

The Lymph Node

2006-03-27T16:50:00.000-05:00

I met with Dr. Bhargava today, mostly to talk about my unusually enlarged lymph node. I'm thinking to make it easier, since I have countless lymph nodes but only one who's calling attention to himself, that I'd go ahead an name it.

So Fabian is most likely benign. We're guessing here since there has been no change in 6 months and after extremely intense chemotherapy, but it probably isn't preparing to spread. There are naturally no guarantees, but I was honest with my doctor and told him I fully expect Fabian to give me a recurrance of cancer in the next two years. He (my doctor, not my lymph node) shook his head in understanding and spent a lot of time explaining that Dr. Osteen, my surgeon, didn't take Fabian out because it was higher up than the surgical area, and its a good thing that it didn't change in 6 months, etc etc etc.

I'd like YOU to know I still believe I'm going to get cancer again in the next couple of years, but I think after a few more CT scans I'll start to feel better about it. Things are still too recent. As Dr. Bhargava said, the most important thing is time-- time for my body to settle down, and time to see exactly what will happen.

I felt different walking down the halls of Dana Farber today. Its only been 2 weeks, but I didn't feel QUITE so much like I fit in. Its a good thing. I don't feel as I did a few weeks ago-- like I'd been laid off from Dana Farber. Today it felt more like a familiar place, and not my home away from home.

PT and Cruise

2006-03-27T10:10:00.000-05:00

Physical therapy is so simple, yet so difficult. I'm supposed to do everything very slowly so I don't cause injury, but even lifting my leg to the side and then the other leg to the other side... well, its just plan hard. I can't believe how weak I am. In therapy friday, the woman said "Hold out your arm straight and don't let me push it down." My arm went down to my side like I wasn't even trying. Good grief! She said I'm not too far gone though. I'll go 3 times a week for about a month, she said, and should be in good shape by the end. Then I can graduate to a gym.

I got the update on the cruise this morning--and of course our cruise next week has been cancelled. My luck has been spectacular! We basically expected it after seeing pictures of the ship. We're taking a "what will be will be" attitude towards the whole thing. We're even joking that we'll use our new snorkeling equipment--purchased just for this cruise--will be put to good use in my dad's backyard fish pond. Oooo, koi! We're greatly dissapointed, but there's not much that can be done. Worse things could (and have!) happen :)

PT tomorrow

2006-03-23T11:55:00.000-05:00

I'm excited about my cancer retreat next weekend, but I learned I have to share a room with a complete stranger. Not cool. I'm trying not to let it bother me, but it does. I'm not sleeping well at night, plus I'd already planned instead of bringing my inflatable mattress proper-upper I'd create something out of suitcases and random stuff around the room. Now I'm going to look like a freak building some kind of fort. And I'm waking up at 3:00 every morning and watching TV. I can't do that in a room with a stranger. I'm going to have to lie there and look at the ceiling, or haunt the halls of the hotel. GREAT! You know I'm feeling better when I start complaining. :)

I have my first physical therapy session tomorrow and my body knows it somehow. My side is hurting me, which hasn't bothered me in months. As if to say "I'm not doing anything remotely resembling a sit up, so don't even ask." I'm looking forward to it, though. I think it will help make me feel better in the long run.

The cruise ship my mom and I are going on in 2 weeks had a fire this morning and someone died. Sad story, but my first thought is I wonder if that impacts our cruise at all. I mean, obviously some kind of investigation will have to take place, then room reconstruction. What are the odds it would be the same boat?

I thought I'd end by quoting my favorite sign. There are Kiducation goodwill boxes around town for clothing donations, etc. The motto is "We turn used clothing into new kids through education." I find a hundred things wrong with that sentence, but I just love it. They make clothes into children. Or fabricate children out of clothes. And not with black magic, but with learning and understanding. I love this country. :)

Accepting

2006-03-20T09:17:00.000-05:00

I'm noticing that not as much hair is falling out anymore. I'd say I lost 50%. I still get hair in and on everything, but it just seems like the hairball at the bottom of the shower is shrinking :).

I've "come off the roof" as far as the lymph node is concerned. I can't remember now if my doctor said it was there in my last CT scan or not. I'll have to ask at my next appointment. Mom thinks it was there in October, but the scan showed it hasn't changed since then.

What I've come to terms with is that this fight against cancer didn't take the "fight" out of me. I'm exhausted as a drug side-effect, not because I pushed myself too hard. So if my next CT scan shows the pesky enlarged lymph node still there, I'll be okay with it. If the cancer returns in a year or whatever, I can just restart the push.

I'm learning to say "the cancer is gone" which is strange, because I found saying "I have cancer" was much, much easier.

I start physical therapy on friday, and set up a gene therapy session for next month. Basically a genetic counselor and my gastroenterologist will meet and go over my family history of cancer and they can see whether I have certain mutations or predispositions. I'm most concerned for my brother. His odds of getting prostate cancer are sky high, and I can only imagine how he feels knowing his sister had cancer already.

But I'm feeling better and able to leave the house a bit more. There are some days when I'm able to skip my nap. I found that food isn't as against me as before. I'm drinking orange juice now (gasp!) and I can eat past 7:30 without being sick.

And today is the first day of spring!!

CT Scan: All Clear

2006-03-16T14:10:00.000-05:00

I had a CT scan yesterday and was suprised to get the results a week early. My mom and I reacted very differently to the news. The doctor said there was no cancer on the scan and my mom hugged him. All I heard is that I have two unidentified things on my liver and I have an enlarged lymph node near my esophagus.

I know I should be happy. Over the moon. I'm just not.

I don't feel like I got an "all clear" even though I did. As mom said, if my doctor isn't immediately concerned, then I shouldn't be. But then if I'm not concerned about my body, who will be? The good news is that I have another scan in 3 months, and likely 6 months after that. So they can keep looking at these THINGS. I did not expect to hear about anything at all, which is maybe why I'm reacting the way I am.

I'll have to schedule day surgery in April to get my port-a-cath removed (!!) and I'll have to get another endoscopy. I guess that's part of it... it's not "over" for me yet. Everyone else can maybe breathe a sigh of relief but I'm not feeling it yet. I suppose these things take time.

I'll have to go back every two weeks for awhile to keep getting shots for my blood. I got the shot for red yesterday. My whites are dropping but I haven't had to get a shot for awhile.

I'm not dealing with the change from patient to non-patient very well. Not surprisingly they have a billion programs for women recovering from breast cancer ("How to rejoin life") but nothing for anyone else. I'm not afraid to move on, I just don't know HOW. I'm in limbo. Not a patient anymore, but not prepared to scale tall buildings yet, either.

Well, I'm going to call to set up my physical therapy now. I guess that's one thing I have control over! :)

CT Scan Weds

2006-03-14T21:49:00.000-05:00

Wow did Saturday wipe me out. I'm just starting to recover and its been three days. I think I fell asleep standing up yesterday. :)

But I still don't sleep well at night. I start worrying about 8:30pm over the fact I'll have to go to bed in a few hours. Anxiety is killing me, and the best sleep I get is at naptime. This is just what I did after my surgery in August, but not quite as bad. I'm awake at 4am but don't need to get up and wander like I did back then.

I tried lying flat in bed this morning just to remember what it feels like and I accidentally fell asleep. I woke up with reflux. STUPID!! I know better. I know I have to sleep at an incline but its just not that comfortable sometimes.

I've got my CT scan tomorrow which I'm not really looking forward to. I'm not nervous or frightened, I just don't want to do it. I'm sick of doing things I don't want to do. But I guess that's life. Dealing with things you don't want to deal with.

Busy Day

2006-03-11T19:24:00.000-05:00

My cooking club met today. It was at my parents house so I didn't have to drive. What an exhausting day! I didn't dare sit down while everyone was here for fear I wouldn't get up again. I just pushed myself to keep going and I actually feel pretty good. I won't move tomorrow, but it shows me that I CAN be active.

It was so nice to see some of my friends!! I haven't seen anyone in months. Mom jokes that we spend too much time together. Basically she's been in confinement with me for three seasons. We're just starting to come out of it. She went off shopping by herself today for the first time in.... I can't even remember how long. She was always afraid to leave me by myself when I wasn't doing very well, and truthfully I didn't like being alone AT ALL for any length of time. I was very clingy.

I don't drive much still. It feels like I'm playing a video game when I'm behind the wheel. It kind of shows you where I am cognitively. But I AM getting better. Things are starting to come back, just as my doctor said they would.

I don't think I mentioned, but mom and I are going on a celebratory HOLY-SHIT-ITS-OVER cruise the first week in April. The CT scan being the "end" just doesn't do it for me. I can't go on an adventure or sight-seeing vacation, but one where you can do nothing but stare at the waves... that's my speed. :) And I'm going on a young cancer survivors retreat weekend at the end of this month. Supposedly we get to go to a spa and stay at the Park Plaza. It's about damn time my cancer starting getting me the freebees. :)

Oh, I just added a link (on the right) to my cousin Alexandra's fundraiser for the American Cancer Society. Thank you, Ali!

Now that I've sat down, I've crashed. Time to go lounge on the couch...

Settle Down

2006-03-09T19:02:00.000-05:00

Mom has gone into clean sweep mode and is starting to toss old chemotherapy papers and has segregatated medications I'm not taking anymore into a bag in the closet. I CAN'T BEAR IT! I won't let her throw the meds out because I might need them (no I won't) and what if I need those papers (I won't) at some point in the future?

I had my doctors appointment yesterday where I was able to ask-- "What are the odds that you'll see anything on the CT scan?" I really needed to hear the answer that he'll be very surprised. We can't rule it out, but c'mon. The surgeon cut it all out so all I've been through was to make sure stray cells were killed and to hopefully clean out my lymphatic system. I had two lymph nodes with cancer meaning it was starting to move but really hadn't yet.

And I was talking with mom over dinner tonight- in my heart of hearts, I honestly can't believe I'll never get cancer again. I don't think its an unusual feeling for cancer patients to have, but I'm only 31. Most people don't get cancer until they're 50, 60 or so. And if I'm clean for 10 years, they'll stop checking me! GASP! Maybe I can insist they keep checking me. Maybe the paranoia will wear off.

My doctor also told me to cut myself some slack. Its only been 2 weeks since I stopped chemo and the drugs are still in me. He said in 2-3 weeks I can start trying to "push myself" but not yet. Another anxiety I've been carrying around... I should be DOING more but I CAN'T. And now I know, I shouldn't be doing more. Settle down, freak. I really need to hear these things from the doctor. Its so hard to really know what to do. :)

Random Thoughts

2006-03-07T20:03:00.000-05:00

I don't have a whole lot to write about, just some little things. I was incredibly touched to learn my cousin Alexandra is participating in a "Relay for Life" with her college hockey team and proceeds go to the American Cancer Society. And she's playing in my name. How sweet is that!! I wish I had a link to her site, maybe my Aunt Jeanne will post it?

On a somewhat related note, my very good friend Lisa B is participating in the March of Dimes in memory of her daughter Lauren. I hope you'll visit her website at www.walkamerica.org/LisaBradbury to learn more about premature birth and how you can help support the March of Dimes.

I have a doctors appointment tomorrow, and my CT scan is next week. I'm not nervous about the scan, I'm nervous about the RESULTS. I'm trying not to think of it much. I know if the results aren't good, I can keep going on this journey. In the meantime its nice to be able to eat when I'm supposed to (every 2 hrs) without it being a struggle and a chore. I'm not sleeping well at night, but assume its just temporary. I'm sooo tired still. zzzzz

I'm very upset today about Dana Reeve's death (Christopher Reeve's widow). She was diagnosed with lung cancer about the same time I was diagnosed with stomach cancer. Hers was found by a fluke like mine, and also like me, her cancer had been there about a year. I'm just so shocked by her death since I'd felt a bit of kinship with her. I'm convinced that the cancer didn't kill her, but the chemotherapy did. You truly have to be strong enough to fight the poison.

I learned how to do the sudoku puzzles that seem to be a big deal now. I actually prefer them to the search-a-word I'd been doing. If I may be blunt, I now SUCK at search-a-word. All you have to do is find and circle the word, and I can't do it anymore. My mother took my book and pen away last night because I was bitching so loudly about how crap I was at it. A six-year-old could kick my butt. Stupid brain!

Another Shot

2006-03-01T18:54:00.000-05:00

I got another shot today, this one for red blood cells. The shot last week for white blood cells appears to have worked, which is good.

The shot really stung this week because the nurse (not my usual nurse) gave it to me too fast. It reminded me of a lady in the waiting room last week. She was probably about 55. She overheard that I was getting a shot and asked me nervously if it hurt because she was getting one too. I wanted to say 'Well ma'am, it *IS* a shot' but I wasn't so sarcastic. Who asks if a shot hurts? Of course it does!

I'm feeling better now, mostly just very tired. My joints ache, but that's because of the shots. They get the bone marrow working overtime.

My oncology nurse Nina told me I didn't need an occupational therapist because they work mostly with coordination issues, and my chemobrain will eventually just clear itself up. She said I'm being too hard on myself expecting that just because treatment has ended I'm supposed to be all 'normal'. In fact, Nina told me not to expect to feel good until June. At least I have a target now. June, as opposed to say, friday. :)

I don't have the energy to do the physical therapy yet, but I hope in another two weeks or so I can start that. It will probably be a case of "physical therapy then 6 -hour nap". After all, I only went to the doctors today, and I just got up from a 4-hour nap. :)

Broken-brained

2006-02-28T20:50:00.000-05:00

I've got another doctor's appointment tomorrow. Its been a week but I feel like I haven't been in a month.

I still have to find a physical therapist. I don't know how I'm going to do it. I guess I start calling around? Dana Farber suggested I call my insurance company, but I imagine them being unhelpful.

It was suggested to me today that I look into getting an occupational therapist. Basically, this is the person you'd turn to if you had a head injury. I know I'm not dealing with actual brain damage, but I'm not operating correctly either. I had to count out 7 plus 5 on my hand the other day because it's not "THERE" in my brain catalog anymore. I'm kind of anxious about it too. I'm thinking maybe I should go to the store and buy books of brain teasers. Or those workbooks for six-year olds learning math.

For the record, I know NOW that 7 plus 5 is 12. Phew.

The costly shot

2006-02-25T10:36:00.000-05:00

I had a doctor's appointment wednesday, and we started to talk about the end of things. Getting the CT scan, having the day surgery to take the port-a-cath out of my chest... things I never thought we'd discuss (as in, this time seemed so far away).

And since my blood went to crap last month they pre-emptively gave me a shot for my white blood cells. This shot was more of a one-time booster than the every day shot I had to get last time. But as the nurse was giving me the shot, she told me about a patient who was going on a cruise and needed to get the shot on-board. Insurance refused to pay for it since the cruise ship wasn't a hospital setting, and the man had to pay for the shot out-of-pocket.

Just guess how much it cost. Go ahead, guess.Three thousand, three hundred dollars.

Can you believe it?! One stupid shot. I can't even imagine how much my insurance company has spent on me this past year. I know my one-week hospital stay back in August was $26k. I can't imagine the other bills I've racked up. Thank GOD for insurance!

The Last Day

2006-02-19T23:10:00.000-05:00

I had my last, last, very last day of chemotherapy today!

The nurse gave me a cake and a bottle of sparkling grape juice to celebrate. My mom suggested going to my favorite tea room on the cape, and I had just enough energy to do it. It was so nice to be among normal people, just out for a nice lunch.

I'm feeling okay now, waiting for the chemo's effects to start kicking in this week (it seems to be cumulative). My blood was so bad they actually lowered the amount of chemo I've received this past week compared to earlier times. So hopefully I won't be as sick.

I have my CT Scan scheduled for March 15. I'll be going in each week for my regular doctor's appointments, but that scan is a big one... it will cross-my-fingers show that the cancer is GONE. Now I'm under the impression the cancer was removed during surgery in August. I think if cancer shows up on the scan I'll fall into the fetal position on the floor. But I'll cross that bridge when I get to it. For now...

HAPPY LAST CHEMO DAY! YIPEE!!!! :)

What it's like

2006-02-14T18:28:00.000-05:00

My brother's best friend (also named Jeff) and his fiancee sent me a beautiful vase with flowers. You know how I love to share the pictures with everyone!

So tomorrow starts my final cycle of chemotherapy. I've felt crappy today so I'll probably get some fluids along with everything else. Its been awhile since I described what its like to get chemo, so here we go...

First I head to the infusion floor's check-in desk. I hand over my blue card which has my name, birthday, Dana Farber number and Brigham & Women's number on it. The desk makes a hospital wrist band using my card (always making me confirm my birth date), and if my nurse is ready for me I'm handed a yellow piece of paper and told I "can go back now." Otherwise I sit and wait for them to call me. They only call first names, supposedly for privacy. I'm used to there being 800 other Jennifers whereever I go, but not-so-oddly I've only once had an issue with there being two of us waiting. I'm almost always the youngest person in the waiting area.

So off to my nurse I go, winding through nurses stations to the back area where I hand over the yellow sheet of paper to a medical assistant. This is usually Jerry. Jerry weighs me, takes my blood pressure, temperature and pulse, checks my wrist band and asks if I'm in any pain. He then points me to a lovely blue recliner where I wait for my nurse.

Sometimes you have to wait a loooong time for your nurse. Sometimes she's ready. If I'm having blood drawn first, like I will tomorrow, she's usually ready with the needle and tubing. She feels around on my chest for the exact location of the port (located just under the skin near my shoulder) sprays it with cold spray to numb the skin, and pushes the needle in. It usually doesn't hurt at all.

After the blood draw I go upstairs to my doctors offices. I check in showing my wrist band and this time I'm given some green paperwork. I walk across the hall with my paperwork and put it in a waiting basket. Eventually I'll be called for vital signs (if I haven't already had them taken) and I'll be shown to a room to wait for my doctor. Sometimes this takes 15 minutes, sometimes its 2 hours. Doctors and nurses don't keep appointments like they do at a general care office. They'll sit and talk to you all day long if you need it. It throws off the schedule, but when its your turn, you don't feel like you have their attention for only five seconds.

The doctor will chat with me, he'll look over my bloodwork and do a mini exam. I have to be honest now, and say what has hurt over the past week or how bad I've felt or how often I've been to the bathroom. Dignity: out the window.

After the doctor's appointment it's back to the influsion floor where I check back in showing my wrist band and hope my nurse is ready for me. No yellow paper this time. Once I'm in the chair my nurse usually comes over to chat with me, and I tell her the same things I told the doctor (mom fills in the blanks). She pages the doctor if I need extra meds or fluids or whatever. After awhile she comes back with bags of clear fluids, some with drugs, some with just water and sodium. Tomorrow, I'll get Zofran (fantastic for nausea) by drip, saline by drip, and eventually, the chemo itself. The nurse checks my wrist band and makes sure my Dana Farber number matches the bags and sirynges sent up from the pharmacy.

And then I just sit there and wait for it all to pump into me and be overwith. Sometimes I get a heated blanket and drift off to sleep. Sometimes I watch TV. Sometimes I'm amazing and can do cross-stitch or read. Usually I stare out the window. When I look around at other people, I see they're all doing it too.

Sometimes the appointment is for 1/2 hour or so, but its usually an hour or two. Some people have to be there all day. Most people look like me-- you wouldn't know they were sick except that they're in the chair. We look tired most of the time, my cancer friends and I, but not really sick. We do well blending in to society. :)

WBC up

2006-02-10T14:27:00.000-05:00

My white blood cell count went from 300 to over 7000 this week. I can leave the house without wearing a mask! I had blood work done today which showed that the shots really did their job.

I'm feeling okay, mostly just really tired. I'm getting ready for my last chemotherapy cycle (crossed fingers) starting on wednesday, which like the previous ones will last for 5 days.

Then they'll start the shots again so my blood counts don't get as low as they did this time. Have I mentioned lately how much I hate getting a shot?

Lousy Blood

2006-02-06T19:26:00.000-05:00

I found out at today's doctor appointment that I have about six white blood cells. They gave me a shot to increase my red blood cells and now I have to get a daily shot to increase my white blood cells. Even better, I now have to wear a mask in public places. I can't describe it, but I feel like I stick out when I'm surrounded by other cancer patients. I know they're all thinking: "I bet she's sick, I don't want to catch what she has!"

I don't know the unit of measurement, but my WBC is supposed to be between 4.2 and 10 and I'm at 0.3. Yeah! The nurse even joked with me that I had *no* WBCs. It would explain the wicked cold I had over the weekend. My eyes wouldn't stop running and my nose was a faucet. I must have gone through 2 boxes of tissues. But I'm feeling better, somehow. I'm not sure how my body fought it off, but it did! :)

So I have to go into Dana Farber daily the rest of this week, just to get the shot (because I'm a wimp and I can't give it to myself). They'll test my blood again on friday. But other than those appointments, I'm in lockdown at the house again.

Eat up!

2006-02-02T17:34:00.000-05:00

I had a doctor's appointment yesterday and found my blood levels, white and red, fell again. AARRGHGH. I'm in danger of delaying my next chemo (in 2 wks). And though I felt okay I was over-ruled and had to get more fluids. It only takes 2 hours but when you can't read it sometimes feels like an eternity.

And my nutritionist tracked me down. She's extremely nice and very intelligent but she really leaned on me this week. I have a list of things I have to eat, and she told me my way "wasn't cutting it anymore" and the new way is "non-negotiable." She even wrote it in big capital letters at the bottom of my menu thing. So I actually have to eat MORE OFTEN than I do now. I eat twice, sometimes three times a day, and it has to be five or six times a day now.

She said the reason everything tastes bad is not just mouth sores, but because my protein levels are so low. I have to actually "eat beyond the barrier".

I used to love food. I've taken classes (I'm on hiatus now, obviously) in culinary arts at a university known for churning out chefs (Emeril, anyone?). I used to love the color of food and the potential of food to be something great. Now I have someone, a professional at that, telling me I don't know how to feed myself. And even better, I'm not eating enough.

My nutritionist was telling me all this as I was having fluids pumped into me, which shows I also don't know how to drink enough. I'm failing at two of the most basic human instincts.

And I'm only supposed to eat proteins. She said not to bother with fruits & vegetables. Are you having a smoothie? Put some peanut butter in it. Is that yogurt? Put some peanut butter in it. What is that, steak? Put some peanut butter on it. Are you eating tuna? ALL RIGHT I GET IT!

Duh...

2006-01-30T10:48:00.000-05:00

I can't believe I was more sick the week *after* chemo than while I was getting it. Stupid and bizarre.

Speaking of stupid, here's an entertaining story for you which nicely shows how I'm acting lately...

My mom drove me to the grocery store so I could buy more chicken noodle soup. As I'm walking down the cracker isle I notice that the decaf tea I drink at night before I go to sleep is on sale. I know it's normally $3 and change, and see that the sale is 4 for $10. I have absolutely no idea how much that makes each box. I stand there for a few seconds. Nope. Can't do the math. So I just buy one and move along.

HOW DO PEOPLE WORK WITH CHEMOBRAIN!?

I've been doing a lot of staring into space too. I had to get fluids friday and my eyes hurt too much to close so I just stared at my blanket. I don't mean to, but I make my mom kind of nervous during those times.

I'm losing brain cells, people! I can't afford it, I need all the ones I have! :)

Eating Habits

2006-01-26T10:36:00.000-05:00

So in addition to feeling kind of blah lately, I have a new lovely side effect from the chemo: mouth sores. It feels like strep throat. And for some reason, nothing tastes right. Its strange that it took several days for these things to kick in. I starting noticing it on tuesday, which is 2 days after my last chemo.

I tried to eat lunch three times yesterday, which was kind of amusing. I made vegetable soup and found I didn't like it anymore (though I always used to- c'mon, you can't beat the alphabet-shaped noodles). So then I made mac and cheese. Yuck. Mom caught me staring at it. I put that away then tried to finish a yogurt smoothie from the day before. No deal. I think all-in-all I ate a little bit from each and got a decent lunch but I've never done that before.

Then at dinner I didn't like the salad dressing I put on my salad so I got MORE salad and tried a different dressing. Both tasted terrible. And I made mashed potatoes. How bad could those be? Pretty bad, actually. But I forced myself to eat half my piece of chicken, which really was the important part of the meal anyway.

And damn if it isn't time to eat again. (sigh.)

Another Phase Behind Me

2006-01-24T10:59:00.000-05:00

I finished my Cycle 4 chemotherapy on sunday (yay!) and had a follow-up appointment with my nurse yesterday. I'm anemic again, although not too bad. Both white and red blood counts are down, but it's not like they don't know WHY. They gave me a shot of the competitor drug to Procrit. Maybe you've seen their terrible commercials: "I'm ready for my chemotherapy" they say cheerfully. I hate those people.

My uncle Jack sent me the coolest bouquet of flowers yesterday. Isn't it great?

Anyway, I'm doing well. My next chemo starts February 15, and I just have to visit my doctor weekly until then. I think they'll continue to give me the shot, which I just have to deal with. I'm glad there's a reason for me being so tired!

I hope all is well with you, and as always, thank you for your prayers and kind words. They mean the world to me!!

Drugs Rock

2006-01-21T19:44:00.000-05:00

I may be full of poison and highly drugged, but I'm feeling pretty good. I had pizza for dinner. Do you believe that?!

I can't believe how normal I feel. I think this is how I'm *supposed* to feel with my type of chemotherapy, which explains why everyone was so shocked when I was really sick.

If you want to know what I think, I'd venture to guess that my body is USED to the 5-FU since I was on it every day for five weeks just a short time ago. And the amount they're giving me, although all at once, is not that different from the amount I'd receive each week.

So I'm still taking a million hard drugs to combat nausea and it seems to be working. I feel just mildly blah and more tired than anything.

It's a miracle! And to celebrate, I'm going to take a shower and not get all worked up at the hair falling out. "Its okay, its okay, its okay..."

Doing well

2006-01-19T18:36:00.000-05:00

I have two days of chemotherapy behind me and I'm doing well. They really loaded me up with anti-nausea medicine, all of which makes me really tired. I've been up from my 4-hour nap for a few minutes but I'm ready to go back down. I was surprised to find out from my oncologist yesterday that my white blood cell count is down. It nearly delayed treatment for a week. But other numbers looked okay and so we went forward. I was pleased, delays are a nuisance.

I'm still eating and (pat self on back) I'm doing a really good job drinking enough each day. I've found that sometimes its worth it to skip a meal if it means I can get a lot to drink. And so I have apple and grape juice, gatorade and decaf tea. So far so good. Its nice to see that I am able to get enough liquids into my body to keep it going. I was doing a terrible job at it for awhile there...

Here's hoping this highly-drugged state will continue to work.

Poisoning Tomorrow

2006-01-17T19:01:00.000-05:00

Well, tomorrow begins "Cycle 4" for me. A daily dose of chemotherapy through sunday morning. I'm not afraid or even anxious about it. Of course I don't want it to happen, but I'm very resigned to it.

Some of that is because I know I won't be sick tomorrow. It doesn't hit me right away. Rather, it takes a bit of time for the drugs to really hit my system. I might even feel okay Thursday too. Friday, no, but Thursday maybe.

I wish I could describe it in terms of the flu, but its so much worse. I've had chemo and I've had the flu. At this point, I would welcome the flu. It's really harsh punishment and there's nothing natural about it except the body does everything it can think of to get rid of the poison. And I mean everything.

Its the daily infusion of fluids that keeps me out of the hospital. And I've mentioned this before, but the amount of chemotherapy I receive is laughingly small compared to others at any given cancer treatment center. Mine arrives in a needle, not a bag. Or bags. Some people have to sit there for 3, 4 even 6 hours to receive all of their chemo. I'm 10 minutes. It takes longer for me to get my anti-nausea medicine.

So I'll be getting my poison about 1:30 tomorrow, and I'm ready. Ready to be done with it all!

Getting Ready

2006-01-13T18:03:00.000-05:00

I slept all day yesterday, just as predicted. I had a nice day today with my mom, though. We got pedicures and went to see Casanova, which was a very good movie if you like that sort of thing (which I do).

I'm trying to get myself psyched up for chemo to start on wednesday. The chemo hits my body and does terrible damage. Some people can take it and not get sick at all. Especially the type and amount that I receive. Unfortunately, it really gets me.

But the next two weeks will be equally tough on my mother, my caretaker. She has to drive me in and out of the hospital each day for five days, and sit by my chair while they give me fluids and poison and meds and whatever else they find lying about the place. She's house-bound if I'm house-bound. And believe me, I'll be house-bound. Its really a very thankless role. I don't know how she keeps going, but then again, there are days when I don't know how I keep going either. But caretaker is tough. You have to maintain the positive attitude and energy. You can't get sick or be down. You can't get tired. And the caretaker still has laundry and vacuuming and has to make dinner...

So my thanks not just to my mom (whom I'll never be able to properly thank) but to ALL the caretakers past and present. Thanks for being there and being strong for us. We couldn't do it without you.

Good Day in the City

2006-01-11T19:21:00.000-05:00

So The Hartford finally approved my claim. It turns out they agree that my cancer was not a pre-existing condition. Duh. Yeah, I've had it a long time but waited to have it treated so I could pull an insurance scam. GENIOUS!

I immediately put the check in my account. Here's hoping it doesn't bounce.

I had a busy day today. I met with Dr. Stoffel, my wonderful gastroenterologist. She told me to completely stop drinking soda. Even flat soda. D'oh. But I earlier lived on ginger ale for its fine nausea-assisting properties. What am I supposed to do now?

I'm having a bad day with food today in that I feel full but have really eaten nothing. My mom and I had lunch at the Cheesecake Factory. If you've never gone, please do yourself the favor. Their menu is the biggest one I've ever seen. I went to my office after lunch and it was great to see familiar smiling faces. I was definitely on an adrenaline rush. HI! GREAT TO SEE YOU! I really do feel pretty good now though, so it was a good time for a visit. And being there, well, I felt quite normal. Like I haven't been gone for 6 months and I should sit down at my desk and get to work. A good feeling. I need that reminder every so often: THERE IS AN END TO CANCER TREATMENT. LIFE WILL RESUME.

So it was a busy day, as I said. I'm sure I'll crash tomorrow, but I'm very glad I was active today. Crash tomorrow, who am I kidding. I'm crashing now. :)

Vegetation

2006-01-09T19:38:00.000-05:00

I'm tired but feeling much better. I had a lovely nap today. I just don't know how I could get through without one. Actually I *can* go a day or two without a nap but then my exhaustion starts to show on my face. You know I have actually been so pale not even my lips have had color. Frankly, it's creepy. And its happened a lot.

I still don't do much around the house. I'm quite a vegetable. A vegetable in pjs. But I just can't do anything of use, or even to entertain myself. I almost did some card-making today and got as far as pulling out some papers that looked nice together... and then I put them away and took a nap.

And this evening I got out my cross-stitch as if I was going to work on it. Not so much.

I have a doctor's appointment on wednesday and I'm going to go into the office for the first time in a looong time. It will be really nice. I've seen the office building from my chemo chair several times. And I know when the time comes I'm going to be all excited to start back at work but about 2:00pm I'll be looking for a place to nap. Paul, can I sleep under my desk?

On the Road Again

2006-01-05T18:31:00.000-05:00

I drove today for the first time in weeks. It's strangely liberating. I think it's because I was able to reclaim a bit of independance. It's nice to make my own meals and take care of myself. Frankly it's nice to feel good enough to WANT to do those things for myself.

My hair doesn't hurt as much and my skin isn't as sensitive. The doctors are pleased that I've kept my weight stable for two weeks, and I find I'm actually eating like a normal person again. I had pizza for dinner last night, for example. I've stopped living on jello, as I did during chemo/radiation.

I hope to see some of my friends during this break before chemo starts again Jan 18. Since I'm feeling better and able to drive the only problem is being really tired. If I plan well, even that isn't an issue. So, we'll see... :)

Goodbye 05

2006-01-02T11:50:00.000-05:00

I'm very glad to see 2005 go. All I remember about it is getting a new job and then finding out I had cancer. It wasn't a banner year.

I'm feeling okay today if a little lost. Dr. Crazy was visiting but went home yesterday, as did my brother. His financee left this morning. So the house is quiet and I have nothing I *have* to do like I did before Christmas (make cookies, wrap presents, etc etc). I have to write my thank you cards still but I hope to get those done and out of the way today.

Naptime is still important but I discovered I really can go all day without one. I took several naps on NYE and was able to stay up to midnight to kick the old year out.

I'm definitely eating better and more often, which is a very good thing. I probably can eat three times a day now, or pretty close to it. I can actually eat a bagel in one sitting. I'm completely amazed my stomach can hold that much food, but it can! But, if I eat a bagel I'm full for the rest of the day.

I have the energy to make my own meals again--finally. I don't do anything fancy, but can cook soup or make a grilled cheese sandwich... But I don't have energy to do anything requiring a lot of energy. I should clean up my parents' office because I've slowly turned it into a bomb site but I just *can't*. And I can do cross stitch for a little while but I still can't read a book (what's up with that?).

Anyway, I hope you had a wonderful end of 2005 and I wish you a happy new year!

Doing Okay

2005-12-28T22:11:00.000-05:00

I made it through Christmas :) The cinnamon roll was a bad idea, and then later I had some watermelon, another bad idea. Around 7:30pm I felt okay though, and was able to join the family. I'm amazed that I've had a new stomach for 6 months and STILL have no idea what I can eat and what I can't. It's a complete crapshoot for every meal.

I got some fluids today which was good. It kind of keeps me going for a few days. But I'm starting to come out of my chemotherapy/radiation haze. I'm noticing food tastes better and not like something out of a tin can. In fact the idea of eating at all is not so horrible as it was only a few days ago. Improvement! I didn't have a nap today and I haven't completely crashed. Amazing! I ate french fries and actually kept them down. Miracle!

I'm still pretty inactive though I get out of the house a bit. I can't concentrate (did I spell that right?) enough to read or sew or really do *anything* constructive. But baby steps- a little bit at a time...

My next chemo is scheduled for January 18, and I'll get chemotherapy every day for 5 days. This is the same thing they gave me in October which made me REALLY sick. But maybe my body is more used to the abuse, and maybe now I'll have enough drugs to make it liveable. I've let them know at Dana Farber I'm pretty anxious about the whole thing, so hopefully they'll throw the pharmacy at me. :)

I hope you had a Merry Christmas or a Happy Hanukkah! Thank you so much for your cards. I still love to read them. :)

Merry Christmas!

2005-12-24T19:13:00.000-05:00

My dad took me into Dana Farber for fluids this afternoon, hopefully to keep me going.

I just cooked some crabcakes for my parents. I probably shouldn't have eaten one since they're fried, but they're *lightly* fried so hopefully it won't kill my stomach. I made some raspberry squares earlier today too. It feels good to do "normal" things. You know, I can't remember the last time I drove a car?

I'd like to go to midnight mass tonight but I'm not so sure I'll be able to stay up that late. I only took a one-hour nap today. I might just watch on tv. :)

Non-Metallic Food

2005-12-23T11:37:00.000-05:00

I'm so excited-- I ate a **BAGEL** this morning! And what's better, it TASTED like a bagel! Things are starting to lose their metallic taste already. I thought it would be longer than a week but I'm noticing the change already. I'm drinking egg nog right now recognizing it's a terrible idea, but it almost tastes normal. I had some last week and put it back in the container-- it was undrinkable.

Somehow I've gotten a cold on top of everything. I have no idea where I picked it up, but likely it was at the hospital. I took airborne twice when it first started but this cold is apparently too strong. Oh well. I can deal with a cold.

Please add Lowe's to Jen's Hate list. In a chemotherapy illness-induced move I overpaid them in October and they won't give me the excess back. Mom is fighting that one for me too. She's talking to them as if she's me. It's just easier that way.

Hating "The Hartford"

2005-12-22T18:20:00.000-05:00

I seem to be having a good day. I haven't thrown up (Yay!) so that automatically makes it good.

I received another beautiful bouquet today from my Aunt Betty and Uncle Dan. A girl can never have too many flowers. :) I will have to take a picture, it's very christmas-y!

I'm actually online to pay my bills. Would you believe The Hartford is still trying to decide if my case should be approved for long term disability? Yeah, I haven't been paid since Halloween. It's like being unemployed with the bonus of being unable to look for work because I'm too busy being sick. They've requested medical files from Dana Farber and Brigham and Womens Hospital to find out if my cancer was a pre-existing condition. You know, like a chronic back-ache?

The BEST part is that who they addressed their requests to... "Dana Farber" and "Brigham and Womens". Like any human being is going to open that letter and send it to the right department so someone else can find my file so someone else can start pulling the appropriate parts of my medical record so someone else can get it back all in a timely manner... let me ask this: Why does The Hartford ask me for every doctor I've ever seen if it isn't going to use that information in its letters?

I hate The Hartford.

My mom is on the case though. She made all kinds of calls and faxed the letters to actual accountable human beings who work with my doctors. It's a creative idea but it just might work. I'm not sure what I'd do without my mom! I can't fight these battles, I just don't have it in me.

Lovely Flowers

2005-12-20T12:13:00.000-05:00

I had a bad day yesterday, but I'm always willing to let "today" be a better day. So far so good.

AND, to make things even better, I received a beautiful bouquet from my Wallace cousins. I just have to share even though the picture doesn't quite to it justice... And my Aunt Re-Re sent me a beautiful royal purple hat that she made herself! I wore it all last night.

I found out from the nurse yesterday that radiation and chemo is CUMULATIVE so it's okay that I feel more tired now than I did last week. More sick and tired. It's expected.

Oh and Dan, I met your nurse Lori yesterday. She is so nice! I told her what a huge help you've been to me during this whole crappy episode and it was just a lovely "Dan is great" party. :)

I hope you all have your shopping done! I can't believe it's almost Christmas. My nurse Nina said I might be feeling better by Christmas. I shouldn't hold her to it, but I am. I expect to be able to enjoy a mimosa and cinnamon roll like I do every christmas morning. I'm counting on it!

Getting Used to "it"

2005-12-18T19:11:00.000-05:00

My body did a terrible thing to itself. It got used to radiation and chemotherapy. And now it's missing them. I am serious-- I threw up GINGER ALE yesterday. I didn't even think that was possible.

I was doing well my last week of rad/chemo. I felt upbeat and relatively well. My radiation oncologist was very pleased and told me some people genuinely do get used to the abuse. He allowed me to go into the hospital yesterday (saturday) for my last radiation appointment and so they also took the chemo pump off me. I can't say that I *miss* it but I haven't completely gotten used to having it gone yet. Since it was attached to me it was hard not to think of it constantly.

I feel so weak. Drugged though I'm not. I slept 13 hours overnight, had a 3 hour nap... and I'm really tired.

I'm not sure how I'm going to wrap christmas presents. There are a handful going out in the mail to Wisconsin tomorrow and I haven't a prayer. My mom already said she'd wrap them for me. If christmas was tomorrow everyone would have "CVS" and "Target" white plastic shopping bags for wrapping. :)

I just shut my eyes for a few minutes. zzzzz. Great news, I have to go to Dana Farber tomorrow. It's just to see my oncologist though. And I'm getting more fluids. Because at 3:00pm my mother asked me when was the last time I went to the bathroom. And I said "yesterday". So I'm a little dehydrated maybe.

Anyway, I've got a nice week ahead of me. Quiet. No more appointments after tomorrow. Plenty of time to watch all those fun christmas movies and just rest up. If the nausea goes away it would be a huge bonus. I'm sick to death of throwing up!

Thinking Ahead

2005-12-13T17:53:00.000-05:00

I'm starting to think about things I'll do in the future, which is a nice change. I've been thinking about tea a lot, the etiquette of afternoon tea, that sort of thing. I've always thought I should have been born at the turn of the century. White gloves and titles. Horse carriages and high-collared gowns. I've been meaning to ask my parents why I was never given a grand ball in my honor. And just exactly when am I to be married off to a Duke? So I know I'm feeling in good spirits when this kind of thing is occupying my mind.

I want to get back to the research I was doing on victorian era etiquette, but I really haven't the energy. Just the will. And you wouldn't BELIEVE what a weakling I've become. I can't believe it myself. I used to think of myself as the sort of person who could rescue a child who became trapped under a car. I'd just lift the car over my head, and... I have to pass bottles off to my mom to open them. I'm not quite at the frail stage yet, but I'm guessing by the time my chemo is over I'll be able to just barely lift a mug to my lips.

And getting back to the pumpkin cream cheese roll I mentioned at thanksgiving, below is the recipe... I tried a tiny bit but really can't say if it was good or not. The frosting was yummy. Everything tastes metallic to me, like I'm sucking on metal lifesavers. Now is not a good time for a cooking club meeting. :)

Prep: 45 min - Cook: 15 min - Cool: 60 min

CAKE:

1/4 cup powdered sugar (to sprinkle on towel)

3/4 cup all-purpose flour

1/2 teaspoon baking powder

1/2 teaspoon baking soda

1/2 teaspoon ground cinnamon

1/2 teaspoon ground cloves

1/4 teaspoon salt

3 large eggs

1 cup granulated sugar

2/3 cup 100% Pure Pumpkin

1 cup walnuts (optional), chopped

FILLING:

1 pkg. (8 oz.) cream cheese, softened

1 cup powdered sugar, sifted

6 tablespoons butter, softened

1 teaspoon vanilla extract

1/4 cup powdered sugar (optional)

FOR CAKE:
PREHEAT oven to 375°F. Grease 15 x 10-inch jelly-roll pan; line with wax paper. Grease and flour paper. Sprinkle a thin, cotton kitchen towel with powdered sugar.

COMBINE flour, baking powder, baking soda, cinnamon, cloves and salt in small bowl. Beat eggs and sugar in large mixer bowl until thick. Beat in pumpkin. Stir in flour mixture. Spread evenly into prepared pan. Sprinkle with nuts.

BAKE for 13 to 15 minutes or until top of cake springs back when touched. Immediately loosen and turn cake onto prepared towel. Carefully peel off paper. Roll up cake and towel together. Cool on wire rack.

FOR FILLING:
BEAT cream cheese, powdered sugar, butter and vanilla extract in small mixer bowl until smooth. Carefully unroll cake; remove towel. Spread cream cheese mixture over cake. Reroll cake. Wrap in plastic wrap and refrigerate at least one hour. Sprinkle with powdered sugar before serving.

Makes 10 servings

Note: Be sure to put enough powdered sugar on the towel when rolling up the cake so it will not stick.

A Good Laugh

2005-12-12T21:39:00.000-05:00

This made me laugh and I had to share. Be warned of bad language and biting sarcasm. For example, #1 Why is Santa such a complete bastard?

Sixteen Serious Questions Raised by Rudolph The Red-Nosed Reindeer

PRICELESS!

(And I added a list of things that make me happy over there on the left side. Just a few things off the top of my head...)

Reconnecting

2005-12-12T20:42:00.000-05:00

I sent most of my christmas cards out already and had to take the awkward moment to say "GUESS WHAT!" to a few people. I really wanted everyone to know at the same time, back in July, but I couldn't figure out how to contact some people and...what, should I have written letters back then? I don't know. And where the hell is Costa? There, I've said it.

I hope I didn't make it too big of a surprise. "Hi, How are you? Yeah, I have stomach cancer..." I basically said I was diagnosed in July, and I'm doing well though treatment sucks. I think it summarizes it nicely. But it's really no better than the blast email I sent out back in July. Talk about a shocker.

I haven't had a pity day in over a week, which is amazing. The social worker at Dana Farber tried to get me to have one today but I wasn't buying. She gives me the pity look, which I HATE, and immediately I'm strong. Don't confuse the look of pity with real compassion or empathy. You don't need to make the "oooh" sound either. It doesn't help.

No, for now I say things are kind of crappy but I have to just deal with it. I'm in the homestretch with my chemo/radiation double-whammy. My nurse Nina stood in front of me today with a big smile, saying I had done well. It was like I had saved the company money or passed an exam with flying colors. I've just tolerated the torture well, I've somehow been able to keep my blood level, I haven't gotten sick (outside colds) and I try my damnest to eat something 3 times a day.

I found that taking my pills with tea works really well. Another happy use for tea! GOD I take a lot of pills for a 31 year old. And if I take them with water they usually come back up again. Eww.

Anyway, I only have five treatments of radiation left and they put the last pump on me today. I'll be disconnected next monday (though I'm trying to pull some strings to get everything overwith on saturday).

I'm excited to be reconnecting with long lost friends. Hey, if it takes this crap disease to do it, then so be it. We're often looking for excuses and I'm happy to provide one. :)

To everyone: I'm extremely tired right now and avoid the telephone like it might give me cancer (really) so email or snail mail is the best way to get me... and there might be a delay. I'll try to be better about posting, a little more than once a week. :)

I wish I could give you a big hug!! Thanks for caring enough to check in on me :)

Hurting Hair

2005-12-07T22:15:00.000-05:00

So now my hair is thinning. Don't get me wrong, no one on this earth can tell. Not even me. But the evidence is at the bottom of the tub. And in the sink. And my pillow. I have insanely thick hair though so if it can just continue to fall at its current rate it will just be like the thinning I pay for at the hairdressers. Thanks radiation!

And my hair actually hurts. My mother suggested it was my scalp that hurts, but I maintain it's actually my hair hurting.

I'm having a good evening after feeling kinda crappy earlier. Dinner tasted good but didn't sit well. It's amazing how I still learn what I can eat and what I can't. French toast-- on the maybe list. I won't put it into the "no" list just yet because I might be okay with it later. Jello is still my favorite meal. I prefer grape. I'd like some now but it's too late. If I stop eating about 7:30, I don't throw up in the middle of the night! Amazing. :)

I've been terrible about updating this blog but I'm SOOOOOOOOO tired all the time. I've got some strange sugar-induced bit of energy that I'm using for online christmas shopping (how did cancer patients shop before?). But I'm fading fast...

My stomach hurts to the touch now, which is pretty crappy. It's an inside-out and outside-in kind of thing. I have to keep the tubing from the chemotherapy pump away from my belly because the tube can press up against my stomach and that REALLY hurts.

I'm looking forward to my last day on Dec 19. They'll take the pump off and radiate me for the last time. And they'll stop writing on my body with blue and red markers, and I won't have to put those stupid hospital johnnies on, and I won't have to be taped to the table (a few of you know what I'm talking about), and I can actually stop going to the hospital every damn day!

Eight days left, but who's counting?

Radioactive

2005-12-05T16:14:00.000-05:00

I can't believe how tired I am. I can't believe I'm not bothered by the chemo pump anymore. It's just *always there*.

I'm doing okay, though really inactive. I'm not on the computer much so I'm sorry if you've sent me something and I haven't responded. I'd describe myself as feeling like I have the flu. You can relate... :) Zzzzzzzz

Please Pray

2005-11-30T17:41:00.000-05:00

If you would, please pray for my two close friends, the parents of tiny Lauren Diane. She returned to heaven today after being born a few days ago.
My heart breaks for them...

I am here!

2005-11-30T10:38:00.000-05:00

I'm here I'm just exhausted. Radiation has caught up with me. I'm sleeping more than 12 hours a day and THEN taking a nap on top of it. It was so wonderful to have the pump off for 4 days that I'm 3 days into having it back on and not hating it as much. Don't get me wrong, I hate the pump, I'm just not at the "disconnect it myself" level yet.
And I bought an inflatable bed ramp so my head is elevated but my feet are NOT so I don't slide out of bed. It's a very cool thing, and I can actually breathe better.
I'm having bizzare dreams again though. Fully-realized-I-could-be-a-billionaire kind of dreams that make me wish I could write it all out. I've scared myself repeatedly for the past two nights. Its been one long story that continues even when I wake up and fall back to sleep. Got to be drug-induced.
Oh, would you imagine, it's time to go to the hospital again. I'm off. Happy last day of November!

Happy Turkey Day

2005-11-24T11:25:00.000-05:00

I'm feeling better today. The house smells like cranberry and pumpkin bread. Yummy!

I think its the new medicine. That and the pump being gone. The pyschological concept of a drug-free day is definitely helping. It's not perfect, but I'm wandering around and more active. I made dinner last night. Sure it was a refrigerated pizza I just topped with mushrooms and tossed in the oven, but *still*. I couldn't raise enough energy to make my own jello last week.

I'm watching the Macy's Thanksgiving Day parade and about ready to make a pumpkin-cream cheese roll for dessert. I'll share the recipe if it comes out good. :)

I'm glad I'll feel okay when family comes to visit! Aunt El is here already, but my grandparents, Aunt Karen and cousin Jon will arrive later. The sun is coming out right now, and it snowed this morning. It kind of makes me think of how the chemo has been... sun is coming out. :)

Hangin' in there

2005-11-23T14:47:00.000-05:00

I've been kind of quiet lately, but doing okay. I actually was granted a reprieve by the warden and I have my chemo pump off through monday. Dr. Bhargava said since I'm not getting radiation for 4 days (Thanksgiving holiday) that I could take it off "if I wanted to." Hmmm, should I?

Good thing he didn't change his mind, that would have crushed me completely!

He also put me on another nausea drug--something new on the market. It's working well so far. I still throw up in the morning and feel ill but I don't feel AS ill, and believe me, that's huge. And I'm able to force-feed myself which just wasn't possible before. I don't want to eat, but I WILL eat. Another big difference. Before I didn't want to eat and just couldn't either.

So I have a four day break. It's so nice to have the needle out, to have the chemo bag off my shoulder. I feel like I'm getting another vacation. It's strange, I'm not "working" at beating cancer, I'm just allowing things to "happen" to me. But it's exhausting and somehow seems like a lot of work.

And don't worry about me not enjoying Thanksgiving. Its my least favorite holiday. I prefer Labor Day or Flag Day over this one. The food is all brown, outside everything is brown, people even dress in brown (look around your table tomorrow and tell me I'm wrong). I'm not a turkey fan and don't like pumpkin pie... I think I'll be having clam chowder tomorrow. I wish they'd let me have that every year! :)

Happy thanksgiving to you and yours! The real reason for the holiday is to be thankful for what we have, for friends and family, for the ability to overindulge, and for a restful pause. No gift exchange required, just wear your eatin' britches.

Inhumane Treatment

2005-11-20T17:20:00.000-05:00

I had a pretty mopey day yesterday though I really only cried at night. I'm back to feeling sick and not wanting to eat anything. And carrying this chemo thing around is depressing as hell. Not a second goes by that I'm not reminded of what I'm going through. It's inhumane. I hate it all so much.

I had radiation this morning (yes, Sunday) because I have to have 4 days in a row (at least) and they're closed on thanksgiving. And they're closed on friday too. Which is a bit of good news. I'll get to go four days without radiation. Radiation doesn't bother me, it's the drive in that I hate. It's so tedious. And when I feel like crap I don't want to socialize. Like when my mom takes me in, I nap the whole time. But I feel like I should socialize with the people kind enough to bring me to the hospital. I need to get over that.

I got some fluids today because usually when I'm crying it's because I'm also dehydrated. I've eaten four saltine crackers today. I'm trying to eat some lemon jello right now. My mother would like for me to eat some steak to help my blood levels. I just don't think I can do it. I've only thrown up twice today, and both were in the middle of the night but I always FEEL like I'm going to throw up which is actually worse.

And don't get me started on smells. I didn't notice it last time, but a common side effect is for everything to smell bad. I'm simplifying, obviously, but I've noticed toxic smells in the christmas ornament section of Target, a Best Buy flyer was too chemically strong for me to even look through it, and I can smell food from miles away.

Chemotherapy is torture. I think I'd rather be in jail. I don't know that for certain, but it seems like jail would be managable.

"Jen, will you take your current chemo and radiation schedule or go for what's behind door number two?"
"Oh, door number two. Definitely, Bob."
"Are you sure? It could be worse than what you have now."
"I doubt that Bob!"

Ugh

2005-11-18T19:32:00.000-05:00

I'm a week into the deal, I've got 4 weeks to go, and I'm starting to get sick. I've been getting a morning sickness type of thing where (before today) I'd just throw up after I woke up from a nap or whatever. Now I toss whatever I eat. Bleech.

Chemo sucks.

I actually read my chemo bag and I've been getting 14 ml of chemo per day. That is not much at all, but it's starting to add up. I STILL don't feel as sick as I did with the five day push, but I'm starting to feel crappy.

And damn, do I wish the days were going by faster.

How to Take a Shower...

2005-11-16T22:09:00.000-05:00

...while this thing is attached to your chest by a few feet of tubing:

Plan ahead. Do you really need to shampoo and condition your hair? Have all bottles in front of you.
Have someone else put a plastic bag on your chest and duct-tape it securely on from around your neck to your armpit.
Pretend this is how you usually bathe.
Hang the chemo pump outside the shower and give yourself plenty of tubing so you don't trip or somehow hang yourself.
Get in shower and above all, try not to get wet.
See if you can beat your prior record for fastest shower ever.
Get out of shower, towel off, and rip duct tape from your neck- slowly. Or you'll be sorry. Ignore angry red marks and sticky tape stuff.
Rejoice in not being electrocuted!

Phase II

2005-11-15T21:40:00.000-05:00

So I'm off and running on phase two of my five phases. The next phase (three) is my favorite, because it's a month-long break. :)

My blood levels were fantastic on monday and they hooked me up to my chemo pump. It goes everywhere I do. It doesn't hurt, I can't feel the needle in my chest though I know it's there. I press on it occasionally to make sure it hasn't come loose and all seems fine. The pump makes a whirly sound every so often. I'm sure I'll get bored at some point over the next few weeks and I'll time out exactly how frequent the whirly sound repeats. The bag of chemo says 98 ml but I'm not sure if that's per day or total. I didn't pay enough attention yesterday to what the numbers said. All I know is it's running.

Radiation was no problem. I lie flat, which for me is not easy (mmm reflux) and a giant sphere hovers magically over me, beeeeeeeps, then it rotates to my left like the setting sun. Beeeeeeeeeep again. Another rotation underneath the table I'm on, and a final beeeeeep. Once I'm in the room it's all of five minutes. Waiting for my turn takes a bit longer.

It's day two today and I'm taking some of my anti-nausea meds to be on the safe side. They make me really tired. So I'm leaving for my appointments about 10:30am, and when I get home, I take a 4 hour nap, have dinner, and then go to bed early. It's no wonder I didn't get to post yesterday, I was only awake for three minutes. :) But then yesterday was the long day. I was in the hospital a little before 8am. As long as I don't need fluids I'll be much better off.

I only have mild nausea, which is good. It's often hard to tell why. Is it the drugs? Something I ate? Am I thinking about it, therefore feeling it?

I'm just glad to have the show on the road. Speaking of road, thanks a billion times over to everyone who has volunteered to drive me into the hospitals. I think I have coverage now for all my appointments, but I'm so thankful for the generosity of so many. I love you guys!

Lets try again

2005-11-13T23:31:00.000-05:00

Hopefully I've been quiet enough this week that I can start chemo and radiation tomorrow. I'm more ready than I was last sunday, I know that much for sure.
I've eaten when I didn't want to and taken my meds when I really, really didn't want to. And there was a huge party at my parents house thrown for my cousin Jon and his fiancee Lynse. And I could be part of it until I heard the best-man-to-be say (through a very stuffed nose) he didn't want a beer because he was trying to stay hydrated. Cue to leave!

Craig the Betta

2005-11-09T11:52:00.000-05:00

Many of you know about "Red Craig" my betta fish. I had him on my desk at work at my old job where he and "Blue Craig" (RIP) were very happy. Red Craig recently moved into a new home and I thought I'd share a picture...
This week is the first week without more than one doctor's appointment since sometime in July. It doesn't seem natural. I'm just supposed to rest and drink as much as I can to keep from being dehydrated. I know it sounds silly because I walk around with a drink in my hand all the time, but I can't knock back water or whatever the way I used to. My stomach is so small I can only drink a little bit at a time. I don't drink anything with caffeine and when reflux isn't bothering me I stay away from even decaf tea.

Anyway, I feel like I'm on vacation and it's great! :)

Delayed a Week

2005-11-07T20:21:00.000-05:00

So that familiar feeling of "falling between the cracks" is back again. This time with the American Cancer Society. The woman I'd spoken to a few weeks ago to just called me this evening, "I'm sorry, I think my grandson threw away your information."

What happened to computers, are they writing on sticky notes? What the heck! Also, if the kid threw it away, how did she find my name and phone number? Hmmm. She even remembered I was supposed to start chemo/radiation today. "And you sound really young." "I'm only 31." I plan to use "only" before my age from now on. I'm only 72, for example. :)

So the point of contacting the ACS is that they're the only place I could find that would help with transportation to the hospital. Since I have to go in five days a week for 5 weeks I'm looking for all the help I can get!

---BUT---

My blood counts are too low and so I'm delayed another week. I hadn't realized how tense I was until I started breathing again once my doctor (back from vacation!!) told me. I woke up this morning ready to face it all but was very excited I didn't have to start. C'mon low blood, c'mon low blood... But then my blood pressure was unusually low too. So I was dehydraded again. I received the equivalent of a 2-liter bottle of soda and still didn't have to use the ladies room. That kind of tells you something. And I got a flu shot which I'm happy about. This is not the year to "wing it."

Happy E.R. To You!

2005-11-06T11:06:00.000-05:00

My birthday yesterday was partly celebrated back in the type of place I was born-- a hospital. I noticed my port-a-cath incision site was looking kind of a yucky green and the oncologist on-call told me I had to go to Brigham's Emergency Room. I even told him it was my birthday to see if he'd say "Oh, well in that case..."

Then I had another idea: "Can I go to a local hospital?"
"Well, they won't know how to deal with the port-a-cath."
"Okay, I thought I'd ask."
I knew he'd say it but had to try.

I had a little mini-breakdown that I wasn't going to be able to go have tea on the cape as I'd planned to do, but rather I was going to have to go back into the city (a lovely hour-plus drive each way) to the &$*#ing hospital. The ER no less.

As soon as I told the ER nurse I have low blood counts they made me wear a mask. Damn those things are hot! In the end everything is okay, and there is no infection. I just can't figure out why the incision site from an operation in *September* is still not healed. My stomach healed without a problem and this port-a-cath thing has been a complete bitch.

I took a nap when we got back home and then went to Outback with my parents, grandfather, Aunt Karen, Aunt El and Cousin Kath. It was lots of fun even if I didn't eat much of anything. Just being there was great! (FYI their clam chowder is terrible.)

I'm supposed to start radiation and chemotherapy tomorrow. I have blood taken at 8am to see if it's possible. I'm wondering how my blood could have improved since wednesday, the last time blood was taken, but who knows. I'm not nervous about radiation and I think chemo will be better this time than last. It's still a bitch to sleep though- I've been looking at adjustable beds online this morning. I'm sad though, I love my matress! I especially love my bed frame, which I wouldn't be able to use anymore. I've always slept in canopy beds. Anyway, it's depressing. But I guess waking up without feeling like someone is strangling me would be kind of nice...

Afraid of Delays

2005-11-04T01:58:00.000-05:00

I found out from my radiation oncologist that if my white blood cells aren't up above 1000 (huh?! what does that even mean?) then chemo and radiation will be delayed a week. NOT good news. I don't want to be delayed, I want to feel good around christmas.

Now I'm just paranoid of people. A few doctors shook my hand yesterday and I raced for the antibacterial gel. And if I wasn't a hermit before I'm going to be one now! I've got to hide out and rest as much as possible. Ummm, so why am I up in the middle of the night?

Why else? I'm up at 2am because of reflux. It's my own fault, I had some oyster crackers before I went to bed. I was worried that I'd taken 2349082 pills on an empty stomach. I've been coughing up a lung for an hour but feel better. Hot tea is a life-saver!

Tired Blood

2005-11-02T18:25:00.000-05:00

I learned today I have low white blood cell counts, which I can add to my already low red blood cell counts. I didn't realize that unlike with red cells you can't do anything to raise your white cell count.

The oncologist told me in "old days" I'd have to wear a mask around and pretty much sit at home. But I guess I just have to become obsessive about washing my hands and stay away from crowds. No hand shaking, no licking street signs, that kind of thing. He said if I was scheduled for chemo today they wouldn't have been able to give it to me. That was a bit disturbing.

Today was a much better day than yesterday. MUCH better. I'm amazed that I still learn things each day. For example, I learned last night that taking one of my medications before I go to bed makes it less likely that I'll wake up ill in the middle of the night. Well, it worked for one night anyway. :) And I learned that waffle fries are just as bad as regular shoe string fries. I know it sounds stupid that I should try that, but home fries are okay and potatoes are okay. I guess anything pan-fried is okay but deep fried is NOT. Lesson learned. :)