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Help Lani Get Back on Her Feet

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About a week before Thanksgiving my life changed forever with this image:


During my fourth trip to the ER in a six month time span a tumor the size of an egg was found in my chest pressing up against my heart.

This was insanely surprising because like I said before I had been to the ER quite a few times and nothing like this had come up at all. In one particularly traumatic experience, my complaints of symptoms like the feeling of something sitting on my chest or rapid heartbeat or just in general really feeling like something was wrong was completely laughed off and not taken seriously by the paramedics or the ER doctors who were supposed to be treating me that night. I've since developed a bit of PTSD when it comes to having to go in an Ambulance or to the ER. Before this, I also had been misdiagnosed about three times before someone finally realized I had a rare case of Rocky Mountain Spotted Fever and was hospitalized with the words "If your fever gets any higher you could die" wringing in my ears. I was in the hospital for three days, and no one spotted the tumor.

Once the tumor was found I immediately was sent on a whirlwind of a holiday season. I had test after test after scan after test after IV after test and then a week or so before Christmas, I got my official diagnosis: Stage 2 Classic Hodgkin's Lymphoma. Again I was faced with the words, "You could die".

I'm very lucky in that my Aunt and Uncle live in Columbus, OH right by the James Cancer Center associated with Ohio State, which happens to be the number one place to be if you have Hodgkin's. They graciously opened their home to me and I uprooted my entire life for treatment.

I had to withdraw from school with a semester to go before graduating, pack up my home in Philly, notify all my student loans, and relocate to a place I never imagined I'd live for an illness I never imagined I'd get. I did have some fun along the way tho. My friends threw me a "F*ck Cancer" party as a last "Hurrah!" before I left and I also dyed my hair rainbow. I figured if I'm going to lose it anyway might as well have some fun!





Right after I got to The James I was sent on another whirlwind of tests and scans and SO MANY IVs. I had to be put into menopause and also go on an IUD in order to protect my reproductive system. I also ended up doing fertility treatments because chemo can really damage things down there and I wanted to be sure I would still be able to have kids one day. This was all very costly and involved about 2-4 shots nightly, but sometimes you just do what you gotta do. I now pay $45.00 a month for 19 of my eggs to live in a tube, in liquid nitrogen while they wait to be used.

I also had to have surgery to have a chemo port put in order to receive chemo treatments.



Finally, on January 2, 2018, I had my first chemo treatment. I posted a cheery pic on Instagram and sat thru what was primarily a boring day filled with various doctors and nurses coming in and out to talk to me about things like my weakened immune system and diet.


Unfortunately, by the time I got home from my 5 hour chemo day, things had taken a turn for the worse. The chemo had really messed with my tumor (which was pushing on my trachea and in turn my vocal chords at this point) and caused me to start coughing so severely that I was vomiting and couldn't breathe. An ambulance ended up having to be called and I was taken to the ER where they had to give me a breathing treatment and cocktail of medicines in order to stop the coughing. 

On another chemo occasion, with about 10 minutes left in my day, a nurse tripped over my line connecting my port to my chemo drip and accidentally ripped it out of my chest. Chemo got all over my body and to say it hurt is an understatement. Once again I found myself in the ER, this time for chemical burn and to make sure my port didn't form a blood clot. Unfortunately, when the line was ripped it also yanked on my port causing all the scar tissue that had formed around it to tear.


I went to the ER one more time, and then was hospitalized for three days, because of a freak seizure that happened while at a lunch with my family.

Not everything has been bad throughout this experience. I have made some really wonderful friends within this community. I've also gotten to be closer to many family members and friends from my childhood who I haven't gotten to spend as much time with the past few years.

The Jewish youth group at my school donated a beautiful wig that makes me feel like a princess. The wig also helped when my hair started falling out and I had to shave it off because it hurt so bad. To this day I'm really uncomfortable with how I look post hair loss and having a wig to throw on (and play with) has greatly lessened the blow.  I also got to experience an abundance of love and support from family and friends near and far away thru Facebook, Instagram, CaringBridge, visits, texts and phone calls.



I also got to meet my all-time favorite comedian John Mulaney. He was really nice and has even kept up with me throughout my journey checking in every now and then to see how I'm doing. I also met the wonderful cast of the touring production of "The Phantom of the Opera" and the Broadway cast of "Come From Away". Both were so gracious with their time and talents; particularly Jordan Craig (Raoul in Phantom), Emma Grimsley (Christine in Phantom), and Astrid Van Wieren (Beulah in CFA). I think the best part tho, in all three of these instances, was getting to tell them all how much having them to look forward to, helped while going thru treatment. There are so many days when you feel so terrible, just walking a few steps is a victory and you can start to feel very defeated. All these immensely talented performers helped me in ways I'll never fully be able to articulate. I only hope that one day, if I'm fortunate enough to be in their positions, I can show someone just half as much kindness as they showed me.




I'm also proud to say I've become a voice for my community utilizing social media as a platform. I made a video, wrote an open letter, and even interviewed for my friend Anna Ladd's podcast "Ok But Who Cares".

https://www.facebook.com/lani.skelley/posts/10214064128455380 

https://medium.com/@laniskelley/from-one-cancer-patient-to-another-an-open-letter-to-the-person-who-was-just-diagnosed-291cb418a9c0 

https://l.facebook.com/l.php?u=https%3A%2F%2Fgoo.gl%2FPF2p7Z&h=ATPC6UED6QN-kD4DNdNq2JdJqL1gmT0XbF6QO7q0xWqurCvFXdyPYfnhl10HIZV8taAIQ4c3WZyN1qDoOb1djLF_03vI9OaZBGhUGQcGNINgZu5xujGw2PvWcboU5ltIpAXSg4WOMQ0 

Eventually, it came time for my check up PET Scan and the results of it ended up being good news. My scans looked WAY better than they thought they were going to which meant, I got to finish chemo early and return to my life sooner and start living my new normal!

Now, as of April 10, 2018, I have finished my last chemo and can officially start making plans moving forward. I'm planning to return to school this summer and graduate in December with my BFA in Acting. I'm also working with my school, The University of the Arts, to do a campus-wide bone marrow registry/fundraiser for DKMS; a non-profit that actively works to get donors on the bone marrow and blood registry for people suffering from blood cancers like leukemia and lymphomas. I'm also working on writing a play based off of mine and my friends experiences with Young Adult Cancer that I'm workshopping with the support of UArts Brind School and plan to eventually tour thru various Fringe Festivals coinciding with a Bone Marrow registry at every show. I plan to live the rest of my life advocating for my community. It's not one I'd ever suggest joining, but I am VERY proud to be a member of it.

However, before I do any of this I just want to be able to afford tuition, food, and rent. Having cancer is expensive and I wasn't able to work at all while undergoing treatments, which has left me in a bit of a financial hole. I know times are rough, and everyone needs money for one thing or another, and believe me it is not easy for me to say this, but I'm forcing myself to put my pride aside and admit I need help. If you can contribute anything to help me get back on my feet I would appreciate it more than I can possibly express. If you can't donate, I totally understand! I would appreciate it just as much if you just gave my cause a share. Every little thing helps.

Thank you so much for even just considering!

Love, Lani Skelley

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  • Rhonda Zuckerman
    • $25 
    • 6 yrs
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Lani Skelley
Organizer
Philadelphia, PA

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