Tuesday, September 23, 2008

Having cancer is a full time job

Man. Ain't it the truth.
And I don't just mean that when you have cancer (or crohns, or heart disease, or diabetes. Any chronic illness really) that you live with it 24/7, cuz that's a given. Duh. Yea, you don't really ever get to take a vacation from cancer. Til you cut that crappy stuff out.
I mean more that it's a full time job. 9-5p monday-friday.
Cancer is usually nice enough to take weekends and most major government holidays off, how very convenient. Or not, depending on what YOU happen to do for a living.
For instance, if you work a regular 9-5 office job. It's a bit hard to make yourself 100% available for doctor visits, treatments, and procedures.
I needed a blood transfusion the other day. Now, I'm not going to argue that I should take this news with utmost seriousness. I mean, I don't wanna be running on a quarter tank as much as they don't want me to. But I had to call off the next day. Because the transfusion was going to be about 7 hours. and of course, the infusion room isn't open after 5. And it's not open on weekends.
The next day after the transfusion, was chemo day for me. So I spent another couple hours in the doctors office. But it had to be during business hours. which means no work.
When I was getting radiation, and had to drive to the hospital every day for five weeks. I had to leave work early every day during that five month period b/c the radiation center wasn't open after 5, but the very latest appointment I could get was 3:45p.
While I don't really think that any of my coworkers or friends are going "that lucky bitch. who does she think she is, always getting to leave early and call off last minute. pfff."
Cuz I would gladly trade in the need to call off in exchange for no cancer. (ugh, that was a bit of a no-brainer m'thinks).
And I'm super lucky in the sheer fact that my job is absolutely amazingly awesome at accomodating me (ah. aaalllliterations). I may not have a super high pressure job with tons of benefits and an awesome salary. But while I'm lacking in that department, being able to know my employer has my back and will work with me to get around all these treatment schedules, is incredibly reassuring.
And I realize that I sound a bit whiney. But really. In this day and age with business's and corporations having all sorts of untraditional hours of operation, etc. You'd think that having cancer wouldn't be so damned restrictive.
I am lucky that my employer is a small one, and it's very much like a family. They support me alot. But what if I had just started a new job? I'd constantly be calling off, late, or leaving early, and that sure doesn't look good on ones reputation. It's frustrating to say the very least.
A couple weeks back my surgeons nurse called while I was at work, and I didn't answer. She left a mssg at about 3p that (rather out of the blue) my surgeon wanted me to see a urological surgeon and that he's booked for next few weeks, but had one opening come up the next day.
Uumm...I wanna meet this doctor as much as you do, but I knew nothing about this idea, and had already planned on flying out to California on that day.
I know they're just trying to expedite the process, and with as much time as I spend wasting away in waiting rooms, I appreciate that. But DAMN. Consult me first before just scheduling an appointment which I'll have to cancel. I hate looking bad in someones eyes for no good reason other than false impressions.


  1. can you tell me what symtoms you have had with taking Erbitux?

  2. side effects from erbitux? Well, the very obvious is the rash all over. an acne-like rash. First and most prominently showed up on my face. Then my chest, now it has taken residence on my back, and my arms, and some of my stomach. It is at its worst a couple days after the infusion. and gradually sorta lets up just in time for me to go back in for another infusion.
    I feel it has an effect on my hair and thus is why it's all falling out. but that's not supposedly a characteristic of erbitux.
    I feel that it is irritating the lining of my digestive track, leading to a bit of inflammation, and therefore sometimes blood loss (via GI tract)
    in addition to rash on skin, my skin is horribly dreadfully nastily dry. I literally just shed flakey skin all day. no matter how much oil or lotion i pile on.
    i believe the erbitux (and maybe in combination wiht the fact that my period has been stopped) encourages body hair to grow in darker or more.
    (for the first time in my life i had to wax my upper lip. blech. no fun)
    but this does not include the hair ontop of my head. For instance, that's all falling out left and right, and yet my eyelashes are now the longest i've ever seen them. super lng, and suddenly course and dark. which my hair is not known for being course. ever.

    but it doesn't make me sick feeling, or nauseas. doesn't specifically lower your blood counts. doesn't really make me feel tired or achy. just wreaks havoc on my self esteem is all.

  3. I will be going on it soon and wondered if I would loose my hair. What a drag! How many treatments do you have to have? Weekly? Have you tried Udderly Smooth Udder Cream on your skin?It saved my hands and foot syndrom rash problems when I was on Xloda and it is very cheap!
    Do you think you will loose all your hair?
    Im so sorry you are going through this at such a young age...Sue

  4. Also has your Dr. given you an antibiotic for your rash? It is called dox....I forgot the rest. But, I will find it if your interested. SOme say it takes the rash away! Sue

  5. I totally agree with all of the above my friend. Post-cancer is a pain in the ass as well during work bc there is still follow up appointments.

    Good to hear from you my friend. Keep kicking ass!


  6. Yea, i have the antibiotics, doxycyline. and antibiotic cream, clindamycin.
    helps, but doesn't stop it

    i wouldn't say your hair will fall out. i mean, i think i have alot of external factors to consider. low iron, low potassium, B12 deficiency, poor diet, stress, stress, and more stress, and then of course, chemo.
    but my doc swears its not a typical side effect

    I've been on chemo since mid-may, but at first it was the full 5FU, avastin, erbitux, comptosar. and after like four treatments they cut it down to just erbitux b/c i was supposed to have surgery.
    well, they're keeping me on it b/c surgery still hasn't happened yet.
    i get it every two weeks for a few hours.

  7. Thanks kelly
    yea, i vaguely remember the 'after cancer' part...heh, before i was back in 'during cancer'.

  8. You're blog is not funny. Stop trying. Leave funny to the experts.

  9. Hey "anonymous" here's a helpful hint....STOP READING IT THEN.
    as far as I can see, I haven't said once anywhere on here that it was supposed to be funny. If you knew me, you'd know the way I type is the way I talk.
    Noone made you come here.

    (oh yea, btw, there's a cute little "tracker" right over on the right hand side of this page that tells me a whooooollle lot about you, so writing as "anonymous" is just kinda silly)

  10. becca--how many treatments of the erbitux are you sopposed to do. Any new results? Sue

  11. Sue,
    I'm just sorta on erbitux until I get surgery. which may be by the end of october.
    so til then...every two weeks.

    have you started getting it yet?

  12. No, I havent started it yet, and my Dr. said he wants me to take 5 FU with it every week...Sue