The first mile of the marathon is chaotic with a crush of people weaving in and out trying to find a good position to run in. There’s apprehension about the enormity of the task ahead. And there’s a lot of self-doubt – did my training prepare me well enough? Will my body be able to handle 26.2 miles? Do I have the mental strength to stay focused the entire time?
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 on Monday, March 16. 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.
The PET and CT were easy except for the nasty tracer solution they make you drink. It did a number on my stomach. My blood tests came back completely normal (did I mention my family jokes that I am the healthiest cancer patient in America?)
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.
Needless to say, I was beyond ecstatic when the orthopedist said that I would more than likely be able to run again 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 wants me on crutches another 6-8 weeks. (If I were to break my leg now, the cancer could spread rapidly which is obviously a bad 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 mention that everyone I have encountered at the Cleveland Clinic 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 and University Hospitals. In fact my only complaint thus far about the Clinic is that they block Facebook access on the free wireless network :)
I saw my oncologist again today. All my test results came back completely normal with the exception of the cancer in my femur bone. Because of this, he determined the prognosis 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 % are 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)Here are some links to info about PBL:http://www.bonetumor.org/tumors/pages/page96.htmlhttp://lymphoma.about.com/od/nonhodgkinlymphoma/qt/bonelymphoma.htmhttp://emedicine.medscape.com/article/398308-overview
My treatment will be 3 rounds of chemo 3 weeks apart followed by radiation. For my medical and scientist friends, I will be on R-CHOP. Today was my first treatment which I well detail soon.
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 worse so I am very happy about the diagnosis.
It’s funny how your idea of what’s “good” changes. Before this all started, I thought having any cancer would be awful. When we thought I had osteosarcoma, or something like that, I was happy that it was a localized cancer and not spread from a cancer elsewhere such as the brain. 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 PBL, I am happy because that has a better prognosis than regular Non-Hodgkin’s Lymphoma. For my running friends, I guess you could equate this with “A”, “B” and “C” goals.
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 3 is coming soon…
Thursday, March 26, 2009
Saturday, March 21, 2009
Mile 1 of my Cancer Marathon
I originally posted this on Facebook, and am re-posting this here to explain my absence from blogging....
Many of you have been asking what is going on and I wanted to share my story. My intention is not to freak you out or make you sad, but to share what has been a crazy two weeks for me. In addition, I hope my tale is a reminder to listen to your body and when you do get injured seek medical care from those who understand runners.
About a year ago I started having excruciating pain in my left knee. It would hurt running, walking up and down stairs, etc. It would last for a day or two and then completely disappear for another month or so.
At the time I was pregnant with my second child so I asked my OB about the pain. She attributed it to the normal pains that every pregnant woman endures.
My pregnancy was very uneventful other than this occasional pain. I didn’t even have morning sickness. I ran up until the day of my induction. My second son, Porter, was born in June after a pretty easy labor and delivery. I felt great afterwards and resumed running 3 weeks later.
I continued to have pain through the summer and fall but it was less intense and more sporadic (every 1.5-2 months). I had read that the pregnancy hormones remain in your body while you are nursing so I chalked it up to residual pregnancy pain.
In January I started training for the Cincinnati Flying Pig marathon. The plan was to run it with my husband (his first) and my two college teammates.
As I increased my mileage my knee started hurting more often to the point it was chronic. I was constantly icing and stretching in order to keep it under control. When I stopped running and switched to cross training I had no pain at all.
Despite the knee pain during running, I felt great and was running really well. My workouts were tracking to a 3:10-3:15 marathon which would be a 12-17 minute PR for me. In fact, I ran a 5K time trial in early February of 19:36. This was a time I hadn’t seen since college which was 10 years and two babies ago.
Finally, in mid-February after a painful 2 hour run on hills at South Chagrin I finally decided I needed to see a doctor. I made an appointment with Dr. Nilesh Shah who is a runner and is well known in the running community.
It was about a week and a half before I could get an appointment. I was really worried about ” losing my fitness” and hurting my marathon prospects so I replicated my workouts on the bike and elliptical during this time. In retrospect I find this hilarious.On February 25, I finally saw Dr. Shah. Runners tend to get a handful of injuries, most of them due to overuse. I was sure I had an overuse injury because I felt so good and because the pain went away when I stopped running.
First, two residents saw me. They checked me for the standard running injuries and seemed a little baffled. Next, Dr. Shah took a look at my knee. After eliminating the standard problems he ordered up xrays. I took the xrays and sat down with Dr. Shah to review.
He brought up the images on his computer and then abruptly got up and left the room. That was my first indication that things weren’t going well. He came back a few minutes later and explained that he had observed patchiness on my left femur and wanted to consult with a radiologist. Dr.Shah and the radiologist suspected it may be from bone loss from the pregnancy but wanted an MRI to make sure it wasn’t anything more sinister.
I had the MRI on Friday. They gave me a copy of the images on CD and I spent the weekend Googling “MRI images of the knee”. While the internet has a lot of info, it’s no substitute for medical school and I was unable to diagnose anything.
On Sunday night, I checked my phone and saw that there was a voicemail from Dr. Shah. From the timing of the call and the urgency in Dr. Shah’s voice, I knew things weren’t looking good. One agonizing hour later, I got a hold of Dr. Shah. He informed me that my MRI showed a suspect tumor on my distal femur. I knew right then that I had cancer even though the official diagnosis wouldn’t come for another week and a half.
I saw an orthopedic oncologist that Monday and had a bone biopsy on Thursday. After the surgery, the orthopedic oncologist informed my husband and parents that it was very probable that I had cancer.
I received the official diagnosis on Wednesday, March 11. Non-Hodgkin’s Lymphoma. Diffuse B Cell to be exact.I’m thirty years old. I’ve never had a cavity. In seventeen years of running I’ve never experienced anything worse than shin splints (and a dog bite). I drink organic milk. I ran the Boston Marathon. I once did a 5 mile race 9 months pregnant while pushing a toddler in a jog stroller. I thought people like me don’t get cancer. But they do and I did.
I’m starting to realize that this is just one of those random things that happen. It can happen to anyone, children, Lance Armstrong, me. I think I may play the lottery.
That said, I’ve already learned two important lessons.
First, listen to your body. I am so thankful I was running because it clued me in that there was a problem. I had no symptoms other running pains and would have never gone to the doctor otherwise. Who knows how bad things could have progressed?
Second, when you are injured make sure you see someone who understands runners. It would have been so easy for any run of the mill doc to misdiagnose me and tell me I was running too much and to back off. I am so thankful Dr. Shah knew what was normal and abnormal for runners and took an appropriate course of action.
I have an appointment at the Cleveland Clinic tomorrow, followed by presumably more tests. Once all the results are back a course of treatment will be developed.
Many of you have been asking what is going on and I wanted to share my story. My intention is not to freak you out or make you sad, but to share what has been a crazy two weeks for me. In addition, I hope my tale is a reminder to listen to your body and when you do get injured seek medical care from those who understand runners.
About a year ago I started having excruciating pain in my left knee. It would hurt running, walking up and down stairs, etc. It would last for a day or two and then completely disappear for another month or so.
At the time I was pregnant with my second child so I asked my OB about the pain. She attributed it to the normal pains that every pregnant woman endures.
My pregnancy was very uneventful other than this occasional pain. I didn’t even have morning sickness. I ran up until the day of my induction. My second son, Porter, was born in June after a pretty easy labor and delivery. I felt great afterwards and resumed running 3 weeks later.
I continued to have pain through the summer and fall but it was less intense and more sporadic (every 1.5-2 months). I had read that the pregnancy hormones remain in your body while you are nursing so I chalked it up to residual pregnancy pain.
In January I started training for the Cincinnati Flying Pig marathon. The plan was to run it with my husband (his first) and my two college teammates.
As I increased my mileage my knee started hurting more often to the point it was chronic. I was constantly icing and stretching in order to keep it under control. When I stopped running and switched to cross training I had no pain at all.
Despite the knee pain during running, I felt great and was running really well. My workouts were tracking to a 3:10-3:15 marathon which would be a 12-17 minute PR for me. In fact, I ran a 5K time trial in early February of 19:36. This was a time I hadn’t seen since college which was 10 years and two babies ago.
Finally, in mid-February after a painful 2 hour run on hills at South Chagrin I finally decided I needed to see a doctor. I made an appointment with Dr. Nilesh Shah who is a runner and is well known in the running community.
It was about a week and a half before I could get an appointment. I was really worried about ” losing my fitness” and hurting my marathon prospects so I replicated my workouts on the bike and elliptical during this time. In retrospect I find this hilarious.On February 25, I finally saw Dr. Shah. Runners tend to get a handful of injuries, most of them due to overuse. I was sure I had an overuse injury because I felt so good and because the pain went away when I stopped running.
First, two residents saw me. They checked me for the standard running injuries and seemed a little baffled. Next, Dr. Shah took a look at my knee. After eliminating the standard problems he ordered up xrays. I took the xrays and sat down with Dr. Shah to review.
He brought up the images on his computer and then abruptly got up and left the room. That was my first indication that things weren’t going well. He came back a few minutes later and explained that he had observed patchiness on my left femur and wanted to consult with a radiologist. Dr.Shah and the radiologist suspected it may be from bone loss from the pregnancy but wanted an MRI to make sure it wasn’t anything more sinister.
I had the MRI on Friday. They gave me a copy of the images on CD and I spent the weekend Googling “MRI images of the knee”. While the internet has a lot of info, it’s no substitute for medical school and I was unable to diagnose anything.
On Sunday night, I checked my phone and saw that there was a voicemail from Dr. Shah. From the timing of the call and the urgency in Dr. Shah’s voice, I knew things weren’t looking good. One agonizing hour later, I got a hold of Dr. Shah. He informed me that my MRI showed a suspect tumor on my distal femur. I knew right then that I had cancer even though the official diagnosis wouldn’t come for another week and a half.
I saw an orthopedic oncologist that Monday and had a bone biopsy on Thursday. After the surgery, the orthopedic oncologist informed my husband and parents that it was very probable that I had cancer.
I received the official diagnosis on Wednesday, March 11. Non-Hodgkin’s Lymphoma. Diffuse B Cell to be exact.I’m thirty years old. I’ve never had a cavity. In seventeen years of running I’ve never experienced anything worse than shin splints (and a dog bite). I drink organic milk. I ran the Boston Marathon. I once did a 5 mile race 9 months pregnant while pushing a toddler in a jog stroller. I thought people like me don’t get cancer. But they do and I did.
I’m starting to realize that this is just one of those random things that happen. It can happen to anyone, children, Lance Armstrong, me. I think I may play the lottery.
That said, I’ve already learned two important lessons.
First, listen to your body. I am so thankful I was running because it clued me in that there was a problem. I had no symptoms other running pains and would have never gone to the doctor otherwise. Who knows how bad things could have progressed?
Second, when you are injured make sure you see someone who understands runners. It would have been so easy for any run of the mill doc to misdiagnose me and tell me I was running too much and to back off. I am so thankful Dr. Shah knew what was normal and abnormal for runners and took an appropriate course of action.
I have an appointment at the Cleveland Clinic tomorrow, followed by presumably more tests. Once all the results are back a course of treatment will be developed.
Subscribe to:
Posts (Atom)