In August 2016, I celebrated seven years of being cancer-free.
Seven years is a lifetime. And it was just yesterday.
I was only thirty years old at the time, juggling life as working mom of a toddler and infant. And, oh yeah, training for the Boston Marathon during the in-between.
I had exactly two options at the time. I could crawl into a corner and die. Or I could continue moving forward with life. I chose the later.
During that time, I chronicled my Cancer Marathon through a series of Facebook posts. I will be re-sharing a few of these posts this month. I hope they encourage you, no matter the difficulty of the life race you are currently running. You never know what you are capable of until you try.
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The first mile of the marathon is chaotic. The gun goes off with a muffled bang, and a crush of people begin pushing forward, weaving in and out of each other, accidently (and sometimes purposely) pushing and elbowing each other. Everyone is trying to find the perfect spot that’s close enough to pack to feed off its energy but still affords a little breathing room.
During the first mile, there’s apprehension about the enormity of the task ahead. 26.2 miles? That’s a really, really long way. It takes a long time to drive that far in a car. And I am supposed to make the trek only using my own two feet?
And there’s a lot of self-doubts. Did my training prepare me well enough? Will my body be able to handle the pounding of 26.2 miles of footsteps? Will my body have enough energy to propel me to the finish line? Do I have the mental strength to stay focused for the entire journey?
During the second mile, things start to settle down. You find your lane to run in and immediately that’s one less worry. The pace is still uncomfortable, but you know your training is strong and in a few short miles the pace will become familiar. The miles ahead still feel daunting but instead of apprehension, you feel reverence for what you are about to do. It’s not every day that you run a marathon, and you are determined to soak up the experience.
And so begins mile 2 of my cancer marathon…
I met my oncologist, Dr. Stephen Smith, on Monday, March 16.
My alma mater, Case Western Reserve University, pretty much produces two types of students – engineers and doctors. Vince and I fall into the former category, but many of my friends from my college days went the latter route and now sport “M.D.” next to their names.
So it shouldn’t have surprised me when Dr. Smith walked in and was my age. After all, my friends don their white coats and dispense medical wisdom daily to patients. That seems totally normal. But for some reason, it was weird to think that MY doctor might have grown up on Smurfs, went grunge in high school and hit the collegiate keg parties only a few short years ago.
Nevertheless, he seemed like he knew what he was doing and did not appear to have obtained his medical degree online. So that was all good. Dr. Smith lined me up with a whole host of appointments including a bone marrow biopsy, blood tests, PET scan, CT scan, echocardiogram and a consult with an orthopedic doctor. He obviously thinks I have good insurance.
The bone marrow biopsy was easier than advertised. I would liken it to going to the dentist. Not pleasant but over pretty quick. The biggest difference is that you don’t get a free toothbrush and mini tube of toothpaste to take home.
Thankfully I went into the bone marrow biopsy blissfully ignorant. The day after I was reading some cancer message boards (great bedside reading by the way) and everyone was going on and on about how awful they were. People were sharing in full detail how big the needles were and how painful the procedure was. If I had read that prior, I don’t think I would have been nearly as ambivalent going into it!
The PET and CT were easy except for the nasty tracer solution they make you drink. You have to chug two huge bottles of this fluid that taste like liquid chalk. And the nurses make you do it in a really short amount of time. I was having flashbacks to college and having people shout “Drink! Drink!” as I tried to choke down shots of Wild Turkey.
My blood tests came back completely normal. White blood cells: normal. Red blood cells: normal. Even my cholesterol was a-ok. My family has started cracking jokes that I am the healthiest cancer patient in America.
You have to an echocardiogram because the doctors need to determine if your heart is strong enough to withstand chemo. Dr. Smith flat out said he was not all concerned about this given my physical health. Score one for being a runner!
I was pretty apprehensive about the orthopedic visit. I’ve been an athlete since I was a little girl, and it’s become part of who I am. Additionally, we are a pretty active family, and we love to take the boys for hikes, bike rides, family runs, etc. I’ve been petrified that my life, and the life of my family, would be drastically different because of this cancer. I could accept limited mobility at 80, but not at 30.
Since I had already made up my mind that I wasn’t going to die from this cancer, the next biggest concern was the long-term health of my leg. Would I be able to run and bike and swim again? Would I be able to chase my kids around the playground again? And the most extreme, in the end, would I still have my own leg or would I end up with sporting some artificial bionic limb?
Needless to say, I was beyond ecstatic when the orthopedist said that I would more than likely be able to do everything I did before, including running, once everything is over. It was like I was given part of my life back. The warm glow of this victory made up for the fact he wanted me on crutches for another 6-8 week, in addition to the four weeks I’ve already put in. (If I were to break my leg now, the cancer could spread rapidly which is probably not a good thing) I also have to go to physical therapy to get my range of motion back from the bone biopsy surgery.
At this point, I should explain how I ended up at the Cleveland Clinic. Dr. Shah and his colleague are affiliated with another hospital system about 45 miles from our house. As much as I respected both doctors, and the hospital itself, we decided it would be best if I transferred to the Cleveland Clinic. After all, it is known as one of the best cancer hospitals in the world and is a much shorter commute.
Pretend you needed a new purse. You could get a Chanel handbag from Norstrom’s or an off-brand from Target. Both would make you look super cute and do a fine job of holding the female essentials of keys, wallet, cell phone and lip gloss just fine. If you are a frugal fashionista like me, your initial choice would be the Target (pronounced Tar-jay) bag.
Now, what if I told you that the Norstrom’s was a lot closer to your house. The choice is now a little harder but the Target bag probably still wins out.
Now pretend that both bags will cost you the same amount of money. The game changes a little bit, doesn’t it? The obvious choice would to take the shorter drive to Nordstrom’s and buy the Chanel handbag. As much as I heart me some Target, a girl just can’t pass up a deal like this on a designer purse!
So for reasons of convenience and name brand lust, we made the decision to switch to the Cleveland Clinic. I felt a little guilty, but as soon as I got there, I knew it was the right decision.
Everyone there has been awesome from the doctors to the nurses to the valets who park your car. They treat everyone like a Rockstar. Speaking of which, did you see that Robin Williams is being treated at the Clinic currently? I looked for him but no luck.
The facilities are amazing too. The lobby of the Taussing Cancer Center looks like a 4-star hotel, complete with grand piano and free cappuccinos. Clevelanders have a lot to complain about – the weather, the economy, the river catching fire – but we are truly blessed with fine hospitals such as the Clinic. In fact my only complaint thus far about the Clinic is that they block Facebook access on the free wireless network 🙂
I saw Dr. Smith again today. All my test results (CT, PET, bone marrow) came back completely normal save the cancer in my femur bone. That was pretty much the best case scenario (other than the cancer magically disappearing). That means it hasn’t spread, and the treatment area will be limited in size.
Based on the results of all my tests, he declared my official diagnosis to be Primary Bone Lymphoma.
Primary Bone Lymphoma is a rare form of Non-Hodgkin’s Lymphoma. To give you an idea of how uncommon it is, the incidence rate of lymphoma is 1 in 4,466. Of those about 80% is Non-Hodgkin’s Lymphoma. Of those, only 1-2% are Primary Bone Lymphomas (PBL).
Normally lymphomas start in the lymph nodes. PBL starts in the bone. Despite its obscurity, PBL is very treatable. According to bonecancer.org: “Lymphoma of bone has the best prognosis of all primary malignant bone tumors.“ (Who would have thought there was a website dedicated to bone tumors? Ah, the powers of Google)
When I was initially diagnosed, I didn’t even know that lymphoma was a type of cancer. And now I’ve practically read everything on the web about it about five different times. It’s amazing how quickly you can become an expert on something.
My treatment will be three rounds of chemo followed by radiation. The chemo is spaced three weeks apart, and the radiation will take about a month. So that makes the timeline late June for finishing up everything. That’s good because I really didn’t want this cancer thing screwing up my summer. I have sun to soak up and beaches to frolic on!
As far as I am concerned, I won the cancer lottery. Sure, chemo and radiation will suck, but it’s a small price to pay. It could be a lot worst, so I’m actually very happy with my final diagnosis.
It is funny how your idea of what’s “good” changes. Before this all started, I thought having any cancer would be awful.
When I initially found out I had cancer, we thought it was osteosarcoma, a common cancer that originates in the bones. At that time, I was just happy that it was a localized cancer and not spread from a breast cancer or something. Because that’s really bad.
When I found out I had Non-Hodgkin’s Lymphoma, I was happy that it wasn’t osteosarcoma because the treatment for that can be pretty nasty.
And now that I found out I have Primary Bone Lymphoma, I am happy because that has a better prognosis than regular Non-Hodgkin’s Lymphoma.
Runners have “A”, “B” and “C” goals. There are so many variables that could happen on race day, like weather, crowds, or even catching a cold, that can cause great disappointment if you are too focused on to a singular goal. So, we have a tiered goal structure. A “C” goal is one where you will go home satisfied, but not elated. A “B” goal is challenging, but attainable, and obtaining it sends you home elated. An “A” goal is your best case scenario and achieving that makes you downright giddy.
So my stages of cancer are my “A’,”B” and “C” goals. I am shooting for the “A” goal.
So this is where I am. I know what’s in store for me now. I’m not totally comfortable with it yet, but I know I can do it. Writing my story down, and sharing it with all of you, has helped me capture and organize my thoughts and I thank all of you for all your cheers from the sidelines. Mile marker three is coming soon…