Juwan’s Mom and I are in some of the same online Hodgkin’s Lymphoma support groups. We don’t know each other personally. But I’ve been following Juwan’s treatment and read his mom’s posts and seen videos of him in the Abington High School marching band (where he’s the lieutnant). I celebrate Juwan’s victories and I share the pain when there are setbacks. I smile with her and think of Juwan and his entire family often. As I was going through my own autologous stem cell transplant, I remembered reading his story. And he inspired me to stay as positive as I could. When it got rough, like when I had sepsis or when I couldn’t really eat or when I was feeling scared, what helped me was: my husband staying overnight, my parents visiting, the nurses and doctors who went above and beyond, my family and friends who sent notes and messages and checked in and thinking about the stories I had read. Juwan’s story was one of them.
For his 18th birthday and high school graduation, Juwan is organizing his 4th Annual Toy and Book Drive.
Because since he’s been diagnosed at the age of 13, he’s been organizing an Annual Toy And Book Drive for other children in the oncology unit at Children’s Hospital of Philadelphia to celebrate his own birthday.
“I decided to collect toys to give to the hospital, so that other children will have something to do, to stay positive,” said Juwan. (Source: 6abc)
Here’s how you can help with his drive, but please, please keep on reading to see how you can also help by registering and spreading the word about Be The Match, as Juwan’s autologous stem cell transplant failed and he’s in a need of a donor for an allo transplant.
Amazon Wish List for the pediatric oncology department at The Children’s Hospital of Philadelphia. Please write in the gift message that it is for Team Juwan: https://bit.ly/TeamJuwanWishList
You can also donate or mail a gift card to the Kisses for Kyle Foundation (local foundation that supports the families of pediatric cancer patients) (https://kissesforkyle.org/). Thanks for including a note mentioning your gift is from Team Juwan.
Juwan has also spearheaded a campaign to register more people to Be The Match. If you text “SAVEJUWAN” to 61474 you can get a link to be on the bone marrow donor registry and help potentially save his life or someone else’s.
And his goal at the beginning was to register 1000 people, but he helped register 10000 people! (I tried to add a video here but it’s not embedding for some reason…you can see it here).
He still doesn’t have a match.
“Even if he doesn’t find a match, he’s been adamant about getting more people on the registry list,” said Andrea Adams, Juwan’s mother. (Source: The Philadelphia Tribune).
The following is from an article published in The Philadelphia Tribune who talked to Lauren Mueller, a Be The Match spokesperson:
“If you’re a white patient in need there is a 72% chance to find a person on the registry list,” says Lauren Mueller, a Be The Match spokesperson. “The likelihood of someone who is African American or Black is as low as 23 percent.”
A person’s ethnic background can make all the difference. There is an urgent need to increase the ethnic background of the donor registry, especially in the African-American community. If more Black people register and donate, more Black lives will have a greater chance of survival.
“There is a huge gap we need to fill to give all patients life-saving procedure,” Mueller said. “We need to diversify the registry. That will help all patients find a perfect match.
“If someone joins and turns out [to be a match to Juwan] that can be a cure for him,” she added. “The transplant will be a cure. That’s pretty amazing.
“We are likely to match with someone who shares a similar ethnic background,” Mueller said. “Someone who is African American is more likely to match an African American donor with a similar genetic makeup.”
Adams has a 15% chance to find a donor because of his ethnicity, Andrea Adams said.
Increasing awareness and education in the Black and African American community about the resources and potential cures available to treat Sickle Cell and other blood diseases.
Adding a paid community engagement fellowship in the Twin Cities focused on building relationships and increasing trust with ethnically diverse communities.
Increasing the number of interns from historically black colleges and universities by 50%.
Committing $250,000 by the end of 2021 to partner with community and civic organizations serving diverse communities such as the National Urban League Young Professionals. (…)
Juwan’s 18th birthday is in July. So let’s continue sharing his story and his campaign to register more people to Be The Match. And let’s help him with his 4th Annual Toy and Book Drive. Let’s find ways to make him smile, like he always tries to find ways to make other people smile.
“It makes me happy when I can make someone else happy and make their day better, I don’t know what it is. I just enjoy putting smiles on people’s faces,” Adams says. (Source: 6abc)
It’s my book birthday. TRUST ME, TRUST ME NOT is my 8th book. And this book has been with me in some pretty difficult times and yet helped me move forward. And what better way to celebrate this book birthday than to hopefully raise some awareness and share my own experience to maybe help someone else.
Yesterday I shared my book release campaign. I’m donating $1 per purchase to the Leukemia & Lymphoma Society for the entire month of September for #BloodCancerAwarenessMonth and my friend (and very talented author) Katy Upperman is matching those donations up to $100. And while I was writing I was thinking on how even though cancer doesn’t define me, it’s not like I can simply wish it away. I can enjoy the moments and be present and sometimes I wonder if I talk too much about it. But, you know what, even though it doesn’t define me, it’s part of my daily life. I see the scars. And I feel it in the neuropathy in my feet. I see it on the calendar as I start mobilization in about 10 days. I also do a lot of other things. And I can talk about a lot of other things. It’s a balance. And it’s important to me. It’s also important to me to share what I wrote in the author’s note of TRUST ME, TRUST ME NOT.
So, I thought that on my book birthday, I’ll share it with all of you.
So here we go….
All my books feel special
to me. But this one? Those characters who have become real in my imagination?
They feel extra special. Maybe because there is so much of me in them. Maybe
because they have helped me move forward. Maybe because I am so proud of this
belong to you now, but for a while they were only in my mind. I started writing
this book what feels like forever ago, even though it’s been maybe over a year or maybe two years. It’s kind of a blur.
I was diagnosed with Hodgkin lymphoma in October 2017. After months of feeling tired. After months of coughing. After months of backache.
started with shooting pain in my shoulder and arm after drinking a sip of
alcohol. It was so bad that I started taking Tylenol if I knew I was going to
have a glass. It was the holiday season. And I do enjoy a glass here and there
and really didn’t want to miss
drinking Champagne on New Year’s Eve.
I googled my symptoms as I do and I found that having pain while drinking
alcohol could be an early symptom of Hodgkin’s lymphoma. I thought I felt something underneath
my arm too, but it wasn’t always
there. My mind went on overdrive. And did I mention I have anxiety?
the pain wasn’t going away and my
upper back pain was actually intensifying, I went to my primary care physician
at the end of 2016. But he basically told me that he’d never heard of the pain with the alcohol symptom
for lymphoma, and that based on his physical evaluation he really didn’t think I should be too worried. He dismissed my
concerns and told me I should do physical therapy for my upper back because it
could very well be muscle weakness. And me having anxiety, I thought, Okay…my
heightened concerns stem from my over-imaginative mind, so I’ll do the physical
therapy and see. He also told me I could
do bloodwork but I figured if he was really worried and not just appeasing my
worries, he’d tell me otherwise. I
didn’t do my bloodwork (which could
have very well shown nothing at that stage because Hodgkin’s lymphoma is funny like that).
months of physical therapy. I changed physical therapists so that it was closer
to my work (I was teaching German at a wonderful community college then). None
of them asked me to undergo x-rays. I went back to my primary care physician
because of a lingering cough in August 2017. Unfortunately it was a different
one and she dismissed my concerns. She also didn’t notice I had lost weight. I hadn’t noticed either but it was summer and I was
wearing clothes that fit. I did have to buy new pairs of jeans but I figured it
was because I had been more active. After all, I was doing physical therapy.
cough continued. My back pain was keeping me up at night. I was feeling like
remember driving to work one day, coughing and yelling in my car that no matter
what was making me cough, I was going to be okay. I knew. Deep inside, I knew
there was more going on with this cough.
started jogging again which in retrospect and after finding out what was going
on in my body makes me wonder how I managed to run. Granted it wasn’t fast or long, but still…
decided to continue working out too. But one day, I felt dizzy while working
out. I blamed it on not drinking enough water.
teaching two classes and writing and doing a thousand things as always. But one
day, I felt dizzy teaching, which I blamed on maybe not eating enough. I
started eating more snacks despite the fact that I wasn’t hungry. I continued working and writing and
telling myself it was okay. Because I went to see my doctor.
I had an
itch and a rash during that time too, but I also have sensitive skin so what
are the chances?
found a lump above my chest in early fall of 2017. And then I went back to see
my primary care physician and everything went very fast after that.
time I got diagnosed I had a very large mass in my chest, which was now
basically poking out of my chest wall, hence the lump. It was such a large mass
that the thoracic surgeon who did my biopsy told me I shouldn’t sleep laying down because the mass could be a
risk to my trachea. That was scary. I remember sitting with my husband on our
bed and we were crossing our fingers that the surgeon would call me back to let
me know the biopsy showed Hodgkin’s
and not some other cancer which had way less of a good prognosis.
laughed and reassured my family when I got the diagnosis. Because we got the
news we wanted. But still it was hard. And it got even harder.
was a time we weren’t quite sure if I’d still be alive today. And I am. And I am
I’m still in treatment today. Hodgkin’s is a very treatable cancer but sometimes it takes
longer when you’re not in the majority
of patients who are cured with first-line treatment. I didn’t talk about cancer much online at first and I didn’t tell many people, because I thought I was going
to be part of the large percentage of patients that go into remission after
their first-line treatment.
I had experiences which plainly sucked. I could probably write a book about fighting
for your rights, fighting to be heard, fighting for your care as a cancer
remember telling one of my oncologists that I was worried about getting a PICC
line (peripherally inserted central catheter which is a form of intravenous
access) because the mass was narrowing my SVC (superior vena cava), and that
oncologist dismissed me. I asked him twice. I asked the nurse who told me, “Well, if they say it’s possible, we should try.” My husband wasn’t in the room with me and it was painful and I was
scared and the nurse kept on hitting a snag and then my heart galloped and she
said, “I’m never doing this to you
again. If they want you to go through it again, they need to send you to
met with that oncologist again (who wasn’t my primary oncologist but higher up), he smiled,
raised his hand, and walked back out of the room. Like it was nothing. Like
that wasn’t traumatizing. I mean,
granted it was nothing like a bone marrow biopsy, but still…(that’s
another story). That same oncologist told me once the first chemo didn’t work as well as it usually does, “Now you’ve
become interesting.” Oh and I could
tell you so much more. Like how he dismissed a treatment that was not coming
from his “group” as inefficient and
yet our third opinion from MSK saw it as possibility because “studies have shown it works.”
longer my oncologist for these reasons and many others. We trusted the Fellow
we had, but that same oncologist who had dismissed my concerns kept on pushing
for one treatment plan, making it seem like it was our one and only option. We
weren’t so sure about their treatment
plan forward, and when we asked questions, we didn’t get many answers. It was a very hard time. I
couldn’t talk without getting out of
breath. I couldn’t drive. I couldn’t walk without getting dizzy. And I was scared of
going through that treatment plan still feeling the way I did. Both the
oncologist we saw at MSK and the one we saw at the University of Maryland
Greenebaum Cancer Center gave us hope again.
is so important.
going to go into details because this is a note from me to you, not another
book ☺ Just like I’m not going to go into details on the ER visits,
and the neuropathy and dealing with health insurance and billing and all that.
treated at the Greenebaum Cancer Center and I’m very grateful to my team there. As I’m writing this, the plan is for me to go through an
autologous stem-cell transplant and yes, I’m very scared about the entire process, but I have
a wonderful team and I advocate for myself and I’m heard and I feel in control of the things I can
be in control of and I learn to deal with the things I can’t necessarily control.
As a cancer patient, I’m so grateful to the Greenebaum Cancer Center for truly being an comprehensive cancer center. My sessions with Vicky Wilson have helped me tremendously. I’m less anxious, less stressed. I know that it’s okay to not always be okay. And I owe it to her.
after switching chemo, I found a way to create different moments, like organize
a fundraiser for associations who help young adult facing cancer. And one of my
highlights? Jenna Fisher (who I loved in The Office but would watch in pretty much anything) not only
donated but she also tweeted at me ☺
get me wrong, there were a lot of hard moments, but there were also a lot, a
lot of good ones throughout treatment. And therapy helps!
I’m very grateful to my oncologist, Dr. Aaron Rapoport, for letting me be a part of the team and especially for giving us hope—and for never making me feel like I didn’t matter. To the nurses (especially Liz and Meeghan and the infusion nurses) and Megan (from the Ulman Fund) and Nancy (Survivorship Navigator) who always manage to put a smile on my face and who also sometimes just let me cry when I need to cry.
I may be
tearing up writing this author’s note.
don’t know what to do for someone who’s close to you, who is going through treatment, is
in remission or might have relapsed, or got diagnosed recently, sometimes you
just need to be there. Organize a meal train (thank you to the Chemical
Engineer’s boss for starting one for
us and for his colleagues for keeping us fed during the months of chemo
treatment). Send a card. Mow their lawn. Text them. Call them. Connect with them.
Even if they’re far away. Don’t forget them. And it’s okay to talk about something else. And it’s okay to ask about it. Everyone reacts
differently. And not everyone has the same experience with chemo and treatment.
But I think not feeling like you’re left
behind is important. And when you’re
going through treatment, you may be too tired or too sick or too vulnerable to
be the one keeping that connection. So, reaching out without always expecting
an answer really helps.
Sometimes this cancer treatment thing takes a
long time, and it’s important to not
lose that connection.
you’re reading this author’s note, I urge you to advocate for yourself, to not
let your anxiety (if you’re prone to
it) be used as an excuse as to why you are feeling strange or sick. Sure, it
can be related to anxiety but you do need to be checked out.
to be listened to.
to have your medical team take your concerns seriously.
some days, I do wonder if maybe the first-line treatment would have worked if
we had caught it before the mass went through my chest wall. And I’ll never be sure so I don’t dwell on it. But still…it’s important that your worries do not get dismissed.
If you are
suffering from anxiety or depression, then my wish for you is to be able to
also find a professional who can help you get through the tough moments and who
can give you the tools you need.
know what else? Enjoy the little moments.
those little moments too, because sometimes you have to readjust. But those
moments, you can still find them. A ray of sunshine. A laugh. A good book. A
Those moments? They truly are the big ones ☺
I probably should add the “Buy links” here but you can find all those in my release campaign post here.
If you’ve read that far, you can also share that release month campaign by retweeting Katy 🙂
or retweeting Katy,
Or sharing this post…
But mainly, what you can really do is spread awareness and advocate for yourself and others if you can and enjoy the little moments.
I started writing TRUST ME, TRUST ME NOT what seems like forever ago. And yet, I “only” started writing it in March 2018. I was still undergoing chemo for Hodgkin’s Lymphoma then. I was in my 5th month of chemo then. I’m still in treatment today.
MSKCC’s website explains: “Hodgkin lymphoma (Hodgkin’s disease) is an uncommon form of lymphoma. It is distinguished by the presence of large abnormal tumor cells called Hodgkin Reed-Sternberg cells. Although Hodgkin lymphoma can occur in both children and adults, it is usually diagnosed in young adults between 20 and 34. ” As per the Leukemia & Lymphoma society, in 2019, there are expected to be 82,310 new cases of lymphoma diagnosed in the US (8,110 cases of HL, 74,200 cases of NHL). You can find some of the symptoms here.
So, yep, this book has been with me through quite a bit.
And since its release is on September 5th, during Lymphoma Awareness month, I decided to run a release month campaign to raise funds for the Leukemia & Lymphoma Society.
For every purchase of TRUST ME, TRUST ME NOT during the month of September, I’ll donate $1 to the Leukemia & Lymphoma Society.
Plus, when you order and fill out the form below, you’ll receive an exclusive epilogue and you’ll also be entered in a $25 gift card to your favorite bookstore giveaway.
You can pre-order the e-book before September 5th or you can purchase it starting September 5th and during the rest of the month, It is available on all e-retailers. And you can also get a paperback copy on Amazon.
To receive the exclusive epilogue from Lacey’s point-of-view and be entered in the giveaway, you can simply fill out this form.
If you’d like, you can also add it on Goodreads, BookBub, and request it on Overdrive (for your library)
How can I help spread the word?
You can share this post with your friends or on social media. You can share a picture of your order or of the book. I’ve prepared a tweet and a text you can use. And below there are the pictures of the giveaway in different sizes…but your own pictures of the book might actually work better 🙂
Spread the word on Twitter
Click on TweetThis to tweet the following text: Grab your copy of TRUST ME, TRUST ME NOT now! For each purchase of the book in September, @enowodazkij will donate $1 to @LLSusa for #BloodCancerAwarenessMonth – Plus, there’s a giveaway and exclusive content. All details here: https://elodienowodazkij.com/tmtmn/
You can share those images (your own images of the book could work better :-)): You can download them (for IG, Twitter, Facebook here )