I'm Still Alive ;)

I remember when I would spend hours searching for other patient’s personal stories—be it blogs, Facebook posts, or forums—to gain insight into what to expect during treatment. So many times—so many times—those blogs would abruptly end or people would vanish from their online communities. In most cases, I knew they were fine from other sources, but sometimes you wonder: are they still alive? I vowed to myself that I wouldn’t let that happen. I would provide every detail of cancer and post-cancer drama to those in need.

But instead, a beautiful thing happened. At some point my thoughts stopped revolving around cancer and normality found its way home. Yes, I got my life back.

I understand why people stop writing and contributing to blogs and forums. Constantly reliving the emotions of what happened is a really hard thing to do. I recently read the book “Orange is the New Black,” and reading someone’s memoir about a difficult time in her life inspired me to consider embarking on a similar project. So, as I’ve seriously pondered writing a book about my experiences going through chemotherapy as a young adult, I've been digging up my old medical records from treatment, letters from family and friends, calendar entries, and anything else to jog my memory. With each scrap I find, I am in hysterical tears within minutes. They are neither happy nor sad tears, just wallops of emotion that rise to the surface. I’m only two years post-treatment, so I don’t know if that emotion will fade with time, but for me it’s still there. I can understand why someone might need a break from it for a while.

It’s been a special experience to reflect on who I am after a big health scare. In so many ways I am a very different person; but in others I’m the same ol’ Shana. I’m still hot tempered with immediate family, fascinated with the world around me, easily entertained by 90s shows like Dawson’s Creek, and utterly in love and devoted to my husband and son. But despite those parts of my personality that hung on, other parts of me are so morphed that I don’t recognize myself.

In a previous post, I talked about losing my invincibility. Given my relatively healthy lifestyle, I always assumed I’d live a long, healthy life. I felt invincible. But that attitude never returned, not even a crumb of it. When you adopt the “any moment I could die” outlook, it takes a radical shift in thinking to maintain sanity.

For several months after treatment, I had a pesky spot lighting up on one of my scans that monitor for recurrent or residual cancer. In the end it turned out to be nothing, but during those months, I turned to a friend who also lacks the invincibility cloak. I needed a coping mechanism to deal with this new way of living life. He said that he followed the logic of Richard Feynman, a late American theoretical physicist who lost his wife at an early age. According to my friend, Feynman takes the approach that the universe doesn’t owe us anything; we are not guaranteed any averages. I know it’s blunt, and some might call it depressing, but for me, it worked. I had a way to approach my new attitude. Before, I thought I deserved a long, happy life. I was, in fact, invincible, of course. Now, I know I need to make a happy life, whether or not the length of it meets some statistical average. And who knows, maybe it will anyway.

Another aspect of my life that has changed in a significant way is how I value personal relationships. Before going through chemotherapy, I didn’t understand the importance of community. My husband and I never needed. We had a beautiful home, financial stability, loving families, good jobs, and no major health problems. We would cook dinners for our friends having babies, call those who were ill with well wishes, send sympathy cards to those grieving. We did these things, but I never really knew what it meant. Now I know. Those acts of kindness mean the world. I feel a much deeper connection with people, not just those I know, but people in general, than I did before. 

Before treatment I sympathized. Now I empathize. When you go through chemo, you experience what it feels like to be immobilized from fatigue and pain; you endure the hot sweats of menopause; you learn what it means to fight depression and fear. On these fronts I can relate, but I am also more aware that there are emotions I have not felt and that compassion is one of the most important features to embrace in our humanity. I still slip up every now and then, but at least I know when I need an “attitude check” (as my husband likes to call it).

For these new parts of my personality, I am grateful. To those who are still early in their journey through survival, please know that remission can come with more than just a clean bill of health. Your experiences can shape who you are in a positive way, if you let them.   

Borrowed Time

I've been doing a lot of reading lately. Random reading. At first I thought it was because I was trying to delay becoming active again...you know, always on. Moving from one thing to the next without a breath in between. But I just read an article today that made me realize I've been searching. I've been trying to figure out the past year, what it means to me, what it means to my family and friends...what it means.

I guess what I've realized during this year of reading articles, blogs, stories of sadness, and stories of strength is that it doesn't really mean anything. I don't believe I was given lymphoma to test my strength or to open my eyes to how fragile life is. It wasn't to punish me for anything I've done in the past. When it comes down to it, I had a cell that had some molecular events happen at the wrong time in the wrong place.

I've told so many of my friends in the past that everything happens for a reason. They break up with their significant other: "Don't worry, everything happens for a reason." They don't get the job they thought they had in the bag: "Don't worry, everything happens for a reason." I've said it, probably too many times, but I don't believe it--at least not in the way it was meant.

I don't mean for this to come out sounding negative. I know it probably does. It's just that over the course of this year post treatment, I've realized that a lot of really bad shit happens to really good people. Seems obvious, right? It's not.

It's been interesting adjusting to a new way of thinking. Before cancer, I guess I felt invincible. As long as I ate my organic food, exercised, and treated others well, nothing bad would happen to me. I can honestly say I thought I'd live to 115. Now, I feel like I'm on borrowed time. I don't really like to think too far into the future. It's like I won't let myself go there.

In the future's place, I have the present instead. There is an example of this that sticks out very clearly in my mind. I went to a destination wedding back in October. My dad flew out to Virginia to stay with Zachary, and Jason and I flew down to the Bahamas for the wedding. During the reception, while we were all out on the dance floor, there was this moment. I'm not sure I'll be able to put it into words, but it was like life slowed down for a few seconds. Maybe it was the island air, or the dub step beat, or the positive energy of happy people around me, but it was like someone pressed the pause button, and I was frozen in time and space. After months of chemo hell, it was like I was trying to soak in everything good and beautiful around me. I was fully present, not thinking about anything else other than how good it felt to be there, alive, and truly happy.

Over the past year, I've had to come to terms with the fact that life doesn't always work out how you envisioned. While everything might not happen for a reason, we can still give it meaning--we can create a reason. I think it's a way to cope with the unexpected, to give our experiences a purpose.

I know I have a lot of thinking and rationalizing and searching ahead. There's no way around it when you go through something traumatic. It's a process, one I'm glad I get to do.

One Year Ago Today

This is a message I just sent to the doctor who diagnosed my lymphoma. I hope it brightens his day!

Hi Dr. Tompkins,

I have no clue if you remember me, or if this email is still active, but exactly one year ago to the day you delivered my diagnosis of Primary Mediastinal B-cell Lymphoma while I was sitting in a hospital bed being treated for a blood clot. I just wanted to say thank you for your quick actions getting the appropriate scans and biopsies before the lymphoma progressed any further. I finished my chemotherapy at the NIH back in June, and so far so good. I have a pesky area of uptake in my thymus in the PET scans, but my doctors are feeling comfortable that it's likely thymic rebound since I'm over six months out of treatment and nothing is growing.

I also wanted to thank you for your bedside manner. I have heard some true horror stories about how other patients' doctors told them they had cancer. I sincerely appreciate the compassionate way you told me and how you gave me a lot of hope by saying, "you have every reason to believe you're going to beat this." I really clung to those words throughout this whole ordeal.

If you get bored one day and want to see things from the patient's end, I blogged about my experiences atwww.mylymphomalog.blogspot.com. I haven't updated it recently, but I probably should soon. I've found the online social network of cancer survivors to be extremely helpful during treatment and after.

Well, thanks again for saving my life. Keep up the good work ;) 

All the best,

Shana

I know I need to update this...

I'm so sorry that I haven't been better about keeping everyone up to date with this blog. Life has been very busy the past few months--the good kind of busy.

In brief: my latest PET scan (this past Thursday) still showed abnormal spots in my thymus, but the CT scan looked clean. I'll have to repeat both the PET and CT scans in 8 weeks. As more time passes, the doctors feel more confident that the abnormalities in the PET scan do not represent residual lymphoma. So in this case, only time will tell...

My hope is to update this blog with everything that has happened since October. I have a lot to say about life post treatment and how it feels to be in a frequent scan cycle limbo. For now though, rest assured that we are all doing well and that, quite frankly, life couldn't be better.

The PET scan still shows activity

Too tired to type a ton right now, but I just wanted to update everyone that I had my fourth post-treatment PET scan today, and it still showed the same activity as the previous three PET scans. So...since the activity is the same, the doctors are leaning towards the activity being caused by my body's response to the chemo and not necessarily residual lymphoma. Without the activity disappearing (or at least decreasing) though, they can't be sure it's not a small amount of cancerous cells left over.

The decision: wait another six weeks and rescan....

I'll type more about how we're doing in post treatment limbo soon!

The Waiting Game

I know it's been too long since I last updated this blog. The past two months have been an emotional roller coaster.

After my first post-treatment PET scan, I had a relatively easy four weeks of waiting. I was so confident that the activity showing up in the PET was inflammation and that the second PET would show little to no activity that I didn't mentally prepare for any other news. On August 2, I received that unexpected news:

After spending my required hour incubating in radioactive glucose and inching my way through the scanner, we happily walked into the oncology clinic--totally unaware that my doctors were stewing over a very confusing scan result. I sat in the paper-covered chair. Jason sat to my left, probably thinking about where we would have our celebration lunch.

After the oncology fellow asked the standard questions and pulled my information up on the computer, he left the room to get my oncology team. I knew something was wrong when Jason went slightly pale as he squinted at the computer screen across the room. At that point, the rest of the meeting became a blur.

The doctors entered the room and explained that my PET scan showed a slight increase in activity compared to my first post-treatment scan. The radiologist also noted that the area of activity appeared as if it had increased in size. My doctors were worried that I still had residual lymphoma and might need radiation.

Some background: In this clinical trial, only 2 out of 48 people needed radiation. For the first time in this entire ordeal, I thought "why me." Honestly, not once did those two little words cross my mind when I was diagnosed back in February, or as I lost my hair from chemo, or as I said goodbye to my period for potentially the last time. I just never questioned why I was one of the unlucky few to get lymphoma.

As I write this post, I'm still not sure why I jumped to the feelings of "why me." I guess I was so confident in this treatment plan after my near-perfect mid-treatment scan that I never accounted for the possibility that I might need radiation.

The doctors scheduled a CT scan for the following week to determine if the area with PET activity showed any abnormal tissues. I'm not going to lie, those six days of waiting were really hard. At one point, I just felt like I completely lost hope. Radiation can be very successful, but as you start checking off the boxes of treatment options, it gets a lot scarier.

When I reached that low point, I called my coordinating nurse. I know that a lot of people would just want to hear someone say, "oh, I'm sure it's nothing," but I needed to hear exactly what the doctors were thinking. I really appreciate how honest she was. She explained that the doctors were leaning towards residual lymphoma, but that we definitely couldn't jump to conclusions without seeing the CT scan. She also reassured me that--if it came to it--the NIH radiation oncology team is amazing, and that I'd be in good hands. She also gave my information to the on-call doctor who later called me and spent an hour on the phone going over every possible outcome of the scans and what it would mean for my treatment. Any doctors reading this, there is no way to put into words how much it means to the patient when you spend that kind of time helping us.

After talking to my nurse and doctor, I did feel a lot better. This time, I was mentally prepared for any bad news from the CT scan. THANKFULLY, the CT scan showed no growth or abnormal tissues in the area. The doctor even pulled up my scan to show me exactly what he was looking at and measuring. They decided to wait another 4 weeks to see what would happen in the PET scan over time. Believe me, it's much much easier to wait four weeks after a good scan than 4 days after a bad one!

Fast forward the four weeks: My third post-treatment PET scan still showed activity, although this time it hadn't increased. Since my CT scan a few weeks earlier looked good, and there was no increase in the PET activity, the doctors decided to wait another 4 weeks and repeat the PET and CT scans.

Here I am, waiting for my fourth post-treatment set of scans on October 4th. Jason and I have attempted to get back into the swing of things. We've been attending family events and exploring Washington DC with Zachary. I've started writing again for work, and my hair is even starting to grow back. But even though life is slowly returning to something of a normal, it's completely different than before my diagnosis. I live life in four week increments at the moment, because after four weeks, I have no clue if I'll be cancer free or not.

So, here's to four weeks of enjoying life to the fullest!

The Verdict Is In....Wait 4 More Weeks

So I had my post-treatment scans on Thursday (sorry for the delay in posting here). I have mostly good news: My CT scan looked great. Only a very minor amount of scar tissue remains. My PET scan, however, showed a small amount of activity in my chest.

The doctors don't seem worried yet. Apparently having a small amount of activity in the PET scan is common for this type of lymphoma and treatment. Unfortunately, current PET technology can't dissociate inflammation and active cancer, so interpreting PET images can be a little tricky.

Most likely, the activity in the scan is inflammation caused by my body trying to break down scar tissue. To be sure, I need to repeat my PET in four weeks to verify that the level of activity is stable or decreasing (an increase could indicate that I still have active lymphoma, in which case we would move on to biopsy to confirm).

While I was hoping to have a clean PET this first time around, it looks like I'll have to wait a few more weeks to hopefully hear that news. In the mean time, I'll have my little Zachy to keep me busy!