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 book.
They 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.
It all 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?
Since 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).
I did 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.
But my cough continued. My back pain was keeping me up at night. I was feeling like crap.
And I 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.
I 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…
I decided to continue working out too. But one day, I felt dizzy while working out. I blamed it on not drinking enough water.
I was 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?
…Until I 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.
By the 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.
I 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.
There was a time we weren’t quite sure if I’d still be alive today. And I am. And I am thriving.
And yes, 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.
But then I didn’t.
And then 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 patient.
I 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 intervention radiology.”
When I 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.”
He’s no 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.
And hope is so important.
I’m not 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.
I’m now 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.
And 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 ☺
Don’t 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.
If you 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.
And, if 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.
You need to be listened to.
You need to have your medical team take your concerns seriously.
Because 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.
And you know what else? Enjoy the little moments.
Create 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 conversation.
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.
❤ ❤ ❤