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...