December 21, 2009

School Me on Illness and The Holidays


I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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  1. amy27 Says:
    December 21st, 2009 at 12:11 PM

    this is going to be my first christmas with cancer..and i’ll have chemo and scan results two days before which means that i’ll be sick on christmas and a few days after. eh, not the best. i could have put my chemo off by a week but that would have made me sick on new years and i’d rather be able to go out and celebrate that night :)

    i have a large immediate family–7 siblings, a few with families and it’s very rare for all of us to be together at christmas. this year everyone will be there. i’m so happy that we’ll all be together although i know why everyone is making the special effort to travel home for the holidays and i know it will make the day a bit bittersweet. thinking that this may be my last christmas is a little hard for me-we are a very close family and the fact that i’ll be leaving all of them is very hard to deal with. there’s not much else i can do though but enjoy the moment and be thankful that they can all make it this year. hopefully the chemo won’t hit me too hard either and i can keep my christmas dinner down :)

    now, as far as new years goes, i should be feeling fine by then and, believe me, i’m going to take advantage of that fact!

  2. Alli Says:
    December 21st, 2009 at 12:44 PM

    This will be my third Christmas with cancer. I have been lucky that I was able to schedule my chemo with a break around the holidays, but I still did not feel good. The first year was not too bad, but last year was very difficult. Last year I was given an end stage diagnosis and was not expected to live till this Christmas. I went into the holidays thinking it was my last Christmas. I went to church on Christmas Eve and cried through the whole service. It was not quiet tears running down my cheeks, but body wrenching sobs. Christmas day was hard. I tried to enjoy the spirit with Christmas spirit and watch my young nephews open their presents, but in the back of my head I kept thinking, remember this – it is your last time to capture these moments.

    Obviously, I have gone past my “expiration date” and I approach the holidays this year with trepidation. I am not sure how I feel. I am sure that this year truly is my last Christmas. I am not feeling well these days and I hope I have the energy to enjoy the time with family. I am trying to not get caught up in the last holiday blues – been there, done that. But, how do you truly prevent yourself from doing that. I have little money as I am unemployed and living with family. I have tried to find gifts with meaning that do not cost a lot and am making a few of my gifts. I know that the holidays are hard on my family and they too realize this is my last Christmas with them and that makes it even harder for me. I wish they did not have to go through this.

  3. Garnet Says:
    December 21st, 2009 at 2:56 PM

    I’m already tired of hearing a surprised-sounding, “WOW! You look REALLY good!” from random family members and close friends…and it’s not even Christmas Eve yet!

    Wondering if this will be my last Christmas…wow. So true. It’s like I’m holding my breath, trying to enjoy the most out of this one just in case. What a shitty, cryptic way to live. Though I can’t really help it, even though everyone around me denies that possibility. I know we’re all thinking it, just not saying so out loud. That really sucks.

    I just dropped 15 pounds of water weight (I think that’s what it was from) and I want to be happy and excited about this weight loss. Instead, I feel resigned to be worried about it and email my doctor about it and wondering if I still have enough muscle mass to keep up the good fight.

    Yep. Merry F’ing Christmas. Thank you, Kairol, for getting me thinking honestly again and giving me and other such cancer people a place to be honest, true and open about how we feel and who we really are. That’s the best gift anyone could have ever given me! So happy holidays, whatever they may be!

  4. Pat Steer (Gaelen) Says:
    December 21st, 2009 at 3:01 PM

    So many questions, Kairol – almost a blog of its own (holiday 101 for cancer patients?)

    Six years ago my first big holiday with cancer was actually Thanksgiving – which is also my birthday. All the ‘this oculd be your last fill-in-the-blank’ was there in full force. I got that Christmass -> New Year’s off, a chemo break after 17 mostly in-a-row Folfox+Avastin infusions. By Christmas, I actually felt better, stronger, than I had in a couple of months and I was slowly resolving that I wouldn’t go back on chemo after New Years; I just couldn’t take any more.

    And then Dr. Personality from MSKCC called and said she liked my latest scans and had a liver surgeon who wanted to operate, and could I be in NYC for a consult the Monday after next? So the road got narrower, then wider, then faster, then slower.

    My family has learned not to count on me for meals, not to count on me for gatherings. I can’t take crowds of people and noise any more, so I only stay an hour or so – and in the years when I was on treatment over holidays, I didn’t go at all until I felt better…visiting on my schedule, not theirs. I don’t eat very much when I visit. I take naps. I come late and leave early. It’s been six years since those first last holidays – and every year, I wonder if this might be the last time.

    Don’t get me wrong – I love Christmas. I love the lights, the decorations, finding the absolutely perfect gift for someone (and maybe not spending more than $5, or making it myself.) But I don’t put up my own tree anymore, don’t really decorate, don’t bake. I canned jams this year; those will be the bulk of my gifts. I value time with (some) of my family; not with all of them. ;)

    I’m at the point in family gatherings, especially holiday gatherings, where the pressure of having to update everyone who hasn’t seen me for X months is starting to wear on the prettiness of the season. There are times, far more of them than just a few minutes, when taking a vacation to an exotic place for the holidays seems like a *really* good idea! At Thanksgiving, for the couple of years when I wasn’t on treatments, I went to a dog show and was traveling on Thanksgiving. I’d always gone to that show before I got sick, and it was one of the first things I wanted to do when I felt better. Some of my family were really resentful, but my sister-in-law said, ‘you go, girl!’ I’ve become very conscious of how I spend my time, and if what I’m doing does or doesn’t really work for me or make me happy.

    Alli – I know at some point my road will go where yours is now, and I think about the choices you’ve had to make every day. My strongest thoughts.

  5. Anonymous Says:
    December 21st, 2009 at 8:19 PM

    I truly believe my family would be better off without me being there on Christmas day. I’m not a good actor – I can’t pretend I don’t hugely resent that I’m stuck with a shitty, horrible illness at a time when everyone else my age is getting married, having kids, buying houses, getting promotions, travelling etc. Not too long ago, that’s what I imagined my future held for me too, now all that is just a fading pipe dream.

    Last Christmas, I barely left my room. I will try a bit harder this year. I feel so guilty for the effect my cancer has had on my parents. I know it’s hit them hard and I know I haven’t made it easy for them in the way that I’m (not) dealing with it. They really don’t deserve this and I wish that my situation didn’t have such a profound impact on their happiness. They worked so hard and put so much into us kids – and this is how I repay them. I know, I didn’t get cancer on purpose. But it would have been a lot less serious if I’d acted sooner.

    Anyway, I’m not in the mood for a ‘merry’ Christmas. If I can get through dinner without ending up in tears, that’ll be enough.

    I sometimes feel like this is all some big karmic joke on me!

  6. Jen Says:
    December 21st, 2009 at 11:25 PM

    My original diagnosis of tongue cancer (Oct 08) was about a week before my wedding…. talk about awkwardly dealing with family, friends, and cancer!

    This recurrence in a left lymphnode (Oct 09) had me out of surgery just in time for Thanksgiving. My surgery ended up having to remove the muscle/nerve at the base of the left side of my tongue. My speech and eating were labored. There were over 30 people at my in-laws for Thanksgiving and every single one would ask how I was and get the response of “I’m hood” to which they would suspiciously follow up with “really?”. I also was the last person finished eating, even for all those folks with 2nds and 3rds. I didn’t even take a lot! It was just awkward. :\

    We thought I’d be starting chemo and radiation today (it ended up getting delayed b/c the radiation program is taking a while to make), so I didn’t make plans for Christmas.

    People at work keep asking me:

    1. Why I’m at work these days (almost everyone uses vacation the week of Christmas) – which I get to respond by saying I don’t have any sick leave left.

    2. My plans for Christmas – which I get to say, uh… nothing.. I thought I’d be having chemo and radiation starting this week. I love those “oh right…it’s cancer girl” looks.

    My husband and I are atheists, as well, but this is only my first Christmas as a proclaimed one, so I don’t really know what I’m supposed to do. I actually put up a tree and a Nativity scene and lights. Ha! We had talked about maybe going out of town for the weekend, but I think we may just enjoy staying in and not having to do anything. We don’t have to cook any fancy meals. We don’t have to entertain guests. We don’t have to answer “I’m fine” to tons of people. As much as I love family gatherings, I’m really looking forward to the time to rest. :)

  7. Kairol Rosenthal Says:
    December 22nd, 2009 at 1:02 AM

    Wow, the holidays sound intense for the lot of you. I hope in the midst of all the challenges, you are each able to find a tiny nugget of the day that is about something that actually makes you feel alive, happy, and in control of the situation… even if for a moment.

    Jen – Enjoy the splendor that is sitting out of x-mas celebrations. I think it is a really cool day to be a non-christian. The world slows down and you get to be an outsider with no obligations. If you want the Jewish experience of Christmas, go to Chinese food and the movies!

    Dare I say… happy holidays!


  8. ALK Says:
    December 22nd, 2009 at 10:31 PM

    I’m going out to dinner with some friends. A non-practicing Jew, I prefer not to do much of anything. Sleep late, shmy around the house. Take the day off. Have done the Chinese food and a movie thing– one year we went to see Shindler’s List the year it came out — (how festive?) The theater was packed. I just look forward to around January 14 when for some reason things start to get back to normal again “after the holidays.” Those of you dreading the holidays or not feeling good, I hope you get through it OK. It’s a lot of pressure.

  9. Anonymous Says:
    December 23rd, 2009 at 9:46 PM

    Wouldn’t it be nice if life was like a fairytale and you really did get what you deserved based on whether you were ‘naughty’ or ‘nice’?

    ‘Merry’ Christmas everyone. May you all get through the day and, if possible, get some enjoyment from it too.

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