ursol Posted April 9, 2007 Posted April 9, 2007 I just spent the Easter holiday with my side of the family this afternoon. All 29 of us (11 screaming kids). It was no different than in past years and I fairly enjoyed myself I guess. Holidays are not the same since my diagnosis. I unfortunately cannot make peace with my wig, so it causes me so much discomfort when I don't feel pretty anymore and don't want people to see me. Then there is the usual questions about how I feel? am I in treatment? The worst of it was when my cousin that came up from Virgina asked specific questions about my previous brain lesions because she had a pharmacist friend read my e-mail I had sent months earlier and he told her how serious my condition was. she also said she expected to find me much thinner from all my treatments. (I'm still the same weight after the baby which is 20lbs overweight). I felt as though she wanted to say she expected to find me half dead. I just wanted to scream right there!!! Then I went to my inlaws (mother and father in law and sister inlaw, her husband and kids all live together). Well, I didn't want to go because my mother in law had the flu and only got out of bed today. My WBC is low and I thought it was dangerous for me if my kids or I caught it. Well my husband said he wouldn't let them touch the kids etc. Anyhow, that didn't work because my ignorant inlaws breathed all over my 16 month old especially my mother in law. If I get the flu I will end up hospitalized like the last time. Not sure if anyone has ever felt some people can't wait for you to lose your battle with this disease, but that is how I feel sometimes. My favorite quote from Junior high days: The world is full of Queens and Kings who blind your eyes and steal your dreams, its Heaven and Hell. I hope everyone had a better Easter than I. Tomorrow back to work, Tuesday back to Chemo. Lilly Quote
missyk Posted April 9, 2007 Posted April 9, 2007 Two sentences said it all for me "I just spent Easter holiday with my side of the family..." and "Then I went to my inlaws..." Although I can't say I know how you feel, dealing with all the stupid questions and not feeling as put together as you'd like to (and those inlaws! LOL)...I can sympathize with family gatherings all too well. We had our own today and I was relieved when everyone left and I got to spend some time just laying next to mom napping with her! Hope that your days get brighter for you...and that the flu decides to stay away!! Many prayers for you and yours... Quote
Treebywater Posted April 9, 2007 Posted April 9, 2007 ((((Lilly)))) I'm glad you shattered their preconceived notions of what this disease should 'look like.' It sucks that you should have to, and that people don't get it... but I am still glad. It will make them think twice next time. Sounds to me like they noticed your healthfulness and not your wig in the least. As for the sickie stuff, I can only imagine how frustrating that must be. Happy Easter to you anyway, and know that you are cherished here for the beautiful person that you are. Quote
Guest Kaylei Posted April 9, 2007 Posted April 9, 2007 Lilly, hi I'm Kaylei and new here. I can really relate to what you wrote. Yep. Same type of stuff happened to me. You can be fighting this damn beast, working a job, managing your personal life, juggling treatments,adjusting your wig and enjoying the lovely weight gain effects of chemo and steroids for brain swelling from the brain mets. Already feeling like a misfit in your own body, and wham, someone says the most frustrating thing. I've been told too many times that with having mets to the brain "so and so who is in medical field told me how you don't have much longer" and "I'm surprised that you have not lost weight given your condition". Now that I've been on a mission to eliminate "clutter" in my life I'm feeling much better. Across the board, people and situations that no longer work for me are being discarded. My attitude now is want to write me off? Okay say goodbye now. Funny how the more I do that it leaves that space open for new people and situations I need. Like here in this group. I like both your feisty attitude and your grace to handle what was a difficult day. I'm sorry and I really am for what Easter felt like for you. Those days during this journey are a real heartache. Stay strong and thriving! You are one amazing survivor! Quote
ernrol Posted April 9, 2007 Posted April 9, 2007 Lilly, I know how you feel. When I am asked by someone about how I am feeling, I answer them with the same question I say good how are you feeling? When I think I should do something or not do something, I get very stubborn. I do a lot of things others may consider weird. Like having all the chlorine removed from the water system from my house and drinking only a certain kind of water. I don't go near anyone that I think is sick and might be carrying a bug, even if my WBC is high. I just don't want to catch anything if I can help it. I may offend some people from time to time, but I feel better. Lilly stick to your guns. Do what you want to keep from catching anything. We really have to look out for ourselves sometimes. Stay positive, Ernie Quote
sharonjo Posted April 9, 2007 Posted April 9, 2007 Lily, I'm so sorry that your Easter holiday was spoiled by some insensitive and uneducated relatives. I too sometimes feel as though people expect me to look as though I have one foot in the grave. Hang in there and try not to let them get to you. Focus on your beautiful children instead. They are the reason for you to fight this beast and to win the battle! I'll keep you in my prayers. God Bless, Sharon Quote
trish2418 Posted April 9, 2007 Posted April 9, 2007 I'm sorry Easter was made so stressful for you, Lilly. While you're going through treatment, you've got to give yourself permission to do what's best for you. If that means stepping on some toes, so be it. People will get over it. Be good to yourself, okay? Trish Quote
Heather_T Posted April 9, 2007 Posted April 9, 2007 I am sorry you had to feel that way with your family. I do understand how you feel with how people think you should look or be. I had some people talking to some friends of mine and they ask so is Heather like (with there hands aroung there neck like a rope then pulling on the rope.) My husband told me that and I just cracked up laughing. I know it's not be funny but it was at the same time since I have weathered pretty well from everything. I give you credit for wearing your wig as much as you do. I have worn mine 3 times . I hate it!!!!!! I would rather wear scarfs. I am always looking for really cool scarfs. My thoughts are with you and I hope your treatment goes well tomorrow. Quote
Judy-OK Posted April 10, 2007 Posted April 10, 2007 Lilly .... I rarely get so see my grandson because he or someone in there household, there are 6 of them, is usually sniffling or sick with something. In spite of that I still managed to get a nasty infection that of course settled in my lungs but manage to battle it away and get back off of oxygen 24/7. That being said. while I was in the middle of treatment a rumor started where I used to work that I was on my death bed and had some folks staying with me that would not allow me to receive phone calls. Well once I heard that I made some phone calls and set it straight and told them to ALWAYS ask me if there were any questions. I live alone and might have enjoyed a few call or visits but the rumor mongers had spoken. Hand in there you can do this and come out shining on the other side. Quote
alexan Posted April 10, 2007 Posted April 10, 2007 Dear lilly, many many times I felt like you. But now I relize that the people don't have a clue on what they said. I do the same thing that Ernie does I ask them back. You are pretty & don't need a wig. Sorry about your Easter, next year will be much better. Huggs bucky Quote
ztweb Posted April 10, 2007 Posted April 10, 2007 Lily (what a beautiful name!) I am so sorry you had a bummer of an Easter. Family gatherings, while wonderful in some aspects, can be a right pain in the butt too! Stay strong, and take care of yourself and your babies first...that is what is most important...far more than anything else at this point! God bless, Jen Quote
fillise Posted April 13, 2007 Posted April 13, 2007 Judy--we were at a family funeral on Monday and everyone kept asking my mother how she was feeling and she said "fine" because she was feeling fine. Then they all pulled me aside and asked "how's she really doing?" To which I replied "fine, she's tolerating the treatments very well." They all expected to see her wasting away and were stunned that she wasn't. When we saw her oncologist on Thursday she told him that she thought the diesase and treatment were supposed to take away her appetite, but that she was as hungry as ever. He said "I can't help it if too too healthy--expect for this one little problem." Take care of yourself and don't be afraid to asset yourself to keep healthy and strong. Quote
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