Friday, February 12, 2016

Brain Tumor Movie: Volunteers

Many of you get the Musella Foundation newsletter in your email inbox, but for those of you who aren't familiar you'll find a link on my resources page with an explanation. (Or use the link here: http://www.virtualtrials.com)

In the most recent blast, there was a film group looking for newly diagnosed brain tumor patients who would be willing to be filmed for a year or two to document their journey. They're also looking for "survivors" (I'm so sick of that term), that can help share their tricks, and experiences, to provide hope, and perhaps even direction.




I'm not going to apply, I'm already overwhelmed with all of the tumor patients that I help on a daily basis. I realized the other day, I've been trying to help everyone else, putting myself last. I love helping people, I want to make life easier for them, I want to save them. I want to make it so that their diagnosis never happened. But it is at the expense of my health. I stop doing things to make myself healthy, to make myself feel good. I get depressed by all of these serious, heartbreaking stories. I'm not cut out to handle all of this sadness, all of this stress. It's caused me to emotionally eat, I've gained weight, I'm not focusing on what's best for my body - barely exercising. There's too much stress. Imagine, that not only are you dealing with your own diagnosis, but you handle tens of others. And people don't come to me when things are good, they come to me at their worst (their mom, their daughter, their son, their father, their wife, their husband) are just diagnosed, or they're in the midst of a recurrence. They're terrified, and confused. I handle around 20-50 emails from patients a day, not including many texts, and phone calls. And as you know, the subject matter is heavy as shit. (Not literally - that's gross.)

People never realize how many patients I work with because the job is invisible. And that's fine, but when people reach out to me with questions that they can answer themselves with a quick Google search, it really piles up, and more so, it irritates me. I'm realizing that my time is valuable. That it's okay to redirect people to go do their own research, but it's hard to turn people away. I never feel right about it, but people have to be able to help themselves.

I wake up in the middle of the night thinking about patient cases - both the people I redirect, and the others that I work with as peers. There are many who work with me troubleshooting their cases and we learn together. And those relationships are healing and exciting, but those cases are quite rare. As patients we have to turn on our critical thinking. We need to find our True North. I can't provide that to you. The problem is that I'm scared for everybody, and I'm overwhelmed. I never anticipated that this blog would be such a widely used resource. It's an honor, and I'm flattered, but I didn't factor the issue of growth. I can not take on more patients, but I'm happy to answer questions about my doctors, and some of the treatments, I just need people to do their homework first. Please don't come to me with things that you could easily figure out yourself. Because of that issue, I removed my email address from the blog. If you need to get in contact with me, please comment anywhere on the blog, any post, any page. I added a tab up at the top to help people utilize my blog, how to search it for the information they're looking for (Contact Me). I'm in the process of seriously updating my Resources tab so that it's easy to understand, with images, explanations, and links. I want to do it all, help everyone, but I am hurting myself. I handle tumor correspondence from the time I wake up to the time I go to bed. I handle patient problems all weekend, it's non-stop. There are so many problems with that, but mostly, it's not fair to Dan. He never complains, but I love him so much and for the past several years, he has not come first, the brain tumor patients have.

I'm sorry I can't do more. I feel horrible about this. 

13 comments:

  1. Don't forget that you need to live and enjoy your life too girlie! You are just as important as everyone else. Relax. I'm sure everyone understands and you do more than most. You are so gracious always wanting to give and give and give. That's what makes you who you are. Just remember it's okay to give to yourself too. <3

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    1. Thank you so much for the encouragement. I feel like a complete jerk. It physically hurts to turn people away, or not be able to respond to everyone. I keep telling myself, "Why do you think you somehow have all the answers - you're not a doctor, or a therapist, or a specialist." People will be able to find information without me. But to make it easier I'm boosting the resources page. The answers are out there, but I still feel guilty. Anyway, thank you for commenting and for trying to make me feel better! You are very, very sweet. Just like your name says, SmileyGirl :)

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  2. Jessica...You are so amazing! But you need to take care of you...or there won't be a YOU...for use to follow! I love reading your blog, but not at the account of causing you stress! Do what you need to do to get healthy, have more time with your man, family and friends! Write on your blog for Jessica... I have no desire to be in this movie! I want to spend as much time as I can with my family and friends! Take care of yourself dear friend

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    1. Thank you Laine! I think about you all the time, and love your photos on Instagram with your adorable family. You're right, we have to take care of ourselves, and harness that joy!! ❤️

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  3. Please don't feel "sorry" or "horrible", there is no need for "more"....

    We are grategul to you and this blog for being the ‘beacon’, the ‘lighthouse’ but you shouldn’t be the “rescue chopper”, and definitely not the ‘tugboat’ !!

    Last Nov, you wrote “Sometimes we ride, and sometimes we carry”; to many of us in this “war on cancer”, you are "USS Jessica Oldwyn (CVN-81)" .... Thankyou !!

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    1. Wow, what a comment. Thank you!! You're right, we're in this together, and sometimes we're strong, and other times we can't manage. It's the great ebb and flow. I never looked at myself as a leader, but as the blog has grown, I realize I am accidentally in a leadership role. It's an honor, and something I take very seriously, but also an impossible job at times. Thank you for your gracious comment. And for supporting me. It helps replenish my tank.

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  4. Thanks Jess, for the reminder that we all need to reevaluate and update our priorities. All of us get spread too thin from time to time. You are smart to recognize you have over extended yourself to an unrealistic level and it is time to set fresh boundaries so you can live well, enjoy some quality of life, fulfill your own needs and your own heart's desire. It's good medicine to be true to yourself. Your story, your blog and your resource page is a tremendous gift to many, no need to take the weight of the whole world upon yourself. Be wise and be well and take good care of yourself! C.

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    1. Thank you C. Thank you for understanding me, and encouraging me. It's always surprising how easy it is to get overwhelmed. I am very fortunate to have your, and other people's compassion and understanding. Thank you.

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  5. Bless your caring and loving heart. You must take care of yourself. In reading your blog we were amazed at all you have been doing. We knew you very involved but had no idea how much. No wonder you are overwhelmed. Please do not feel horrible Jessica. You have made available all that you have learned, the resources and how to find information. So proud of you for realizing you need to care for yourself, Dan and set a boundary as to how much one person can do.

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    1. Thank you for understanding, and for not thinking I'm a complete jerk, slash deserter. It's shocking how important it is to set up boundaries. And what I'm learning, is that I'm the only one who can do that. But it's tough to set limits. Just as you're essentially saying, if I don't take care of myself, I won't be any good to anyone else. A very difficult lesson to learn, and I think it's going to be a long journey trying to absorb that information. Thank you for being so gracious toward me, I am grateful beyond measure for your kindness.

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  6. FWIW I think you are one of the kindest and generous people I've had the pleasure to "meet" online. You helped - and continue to help - me in my family's darkest times and we are forever grateful.

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    1. Oh Logan, please. That is a massive compliment. I've been keeping up with Alison. You are working so hard, and I admire you. I'm so proud of you. You are truly Alison's warrior, and love, and rock. I'm glad you're using the cocktail blog society. Please always keep me in mind if there's anything specific I can do to help you. You should still have my email, but if for some reason you end up without it, you can always comment on the blog and I'll reach out. Sending all three of you lots of love. xo

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  7. I also want to say just be yourself, listen your inner voice, and most importantly take care of yourself. Thanks for your blogs.
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