This is my first crack at writing a blog. For many of you this will come as a surprise that I have cancer, for others you have known for a few days. I wanted to create this blog as a way for me to express my thoughts and for you to follow me as I endure 14 cycles of chemotherapy a total of 30 weeks while I still continue to plan our wedding. If all goes well and my body stays healthy, I should finish chemo right around the same time as our wedding and we will have two things to celebrate!!
What symptoms did I have?
For two years now I have been having reoccurring flare ups of pain near/around my left elbow. These flare ups only last about a week at a time so by the time the pain becomes so unbearable that I want to see the doctor, I can't even get in until the flare up has ended. Last year this is exactly what happened. I couldnt get in the see the dr until after the flare up had ended. His diagnosis? He said he didnt see anything wrong and that I just needed to go to physical therapy to strengthen my elbow. He did not order any tests or X-rays. Well at the end of August, the pain in my elbow flared again. This time was different though. My arm was swollen, red and hot to the touch. The pain would wake me up at night, my arm throbbing since the advil had worn off. My mom told me it was probably gout and that I needed to stop drinking, I barely drink at all so I didn't think that was it. Sean insisted that I go back to the dr to find out what was wrong. Luckily, I was able to get into the dr right away, Thank God.
How it was diagnosed...
I saw Dr Croog at Commonwealth Orthopedics in Fair Oaks and he was puzzled by my symptoms and pain. He asked if I had had any recent injuries, I said I hadn't. He suggested an X-ray but didn't expect to find anything. This statement, 'I dont exoect to find anything', will become the theme of my journey so far. The X-ray revealed a spot on the bottom of my humerus near my elbow. He wasn't sure what it was so he suggested I get an MRI and blood work.
When the MRI and bloodwork came back inconclusive, Dr Croog referred me to a bone Dr, who is also a sarcoma specialist. When I met with Dr Wodajo, he gave me two possible scenarios... 1) Osteoid Osteoma or benign tumor, or 2) bone infection. He ordered a CT scan and more bloodwork. The scan revealed that it was not the Osteoma but the infection. Dr Wodajo suggested surgery to remove the infection and said there was nothing to worry about. Surgery was scheduled for Nov 10.
Surgery was easy. It was arthoscopic surgery and after three days of resting I felt great. Full arm movement took about a week and half but that's nothing if I didn't ever have to endured the flare up pain again. Dr Wodajo requested I come back in a week for a follow up visit and he sent the sample to the lab to find out what had caused the infection. A week later, I went back by myself to see Dr Wodajo and have him look at my arm. After waiting 45 mins, which isn't typical for him, he told me something I wasn't expecting. "We got the biopsy back and it's malignant." he said my case was so abnormal that he brought it to a conference board he sits on with a bunch of other Drs in the area. Awesome, right? He said all of the tests we had previously done showed no signs of abnormailty but when my sample was tested, the cells were abnormal. Dr Wodajo suspected Ewing Sarcoma would be the diagnosis but there were two other tests that had still not come back, and they would confirm the diagnosis. Was there still a chance that this was false? He told me that one of the cancer specialists on the board had agreed to take my case since it was so abnormal. Dr Wodajo ordered another X-ray and told me I had to get in the week of Thanksgiving to meet with Dr Spira.
Cancer?
I couldn't believe what was happening. I hadn't taken anyone with me to the appt because this wasn't even an option I had been told about. I got the X-ray, scheduled my appt with Dr Spira and headed home. I wasn't sure how to tell Sean, when to tell Sean, and whether to tell my family before I had the official diagnosis..... Well, I had a complete melt down on the way home and Sean texted me asking how the appt went. I asked him to call me since I was crying uncontrollably. It took me some time to finally tell him what had happened. He said we'd get through this and we needed to go to the dr next week to get the official diagnosis. I decided that we wouldn't say anything until we knew for sure, he agreed. Longest weekend of my life!
Diagnosis confirmed
I asked Sean to go with me to the appt and over the weekend I read A LOT about Ewings sarcoma. Wikipedia defines it as, "a malignant round-cell tumour. It is a rare disease in which cancer cells are found in the bone or in soft tissue. The most common areas in which it occurs are the pelvis, the femur, the humerus, the ribs and clavicle." When I read the symptoms for Ewings sarcomas, I basically knew my fate. "Pain or swelling in the area near the sarcoma, may be hot to the touch, and so on." This is exactly the same symptoms I had been having for about 2 years. These types of sarcomas are typically found in adolescent teenagers and more commonly found in males. The average age at diagnosis? 12-15 years. I'm almost 30, WTF? Again, simply awesome.
The morning of the appt I was really nervous. Since I already had it in my head I had cancer it wasn't that difficult when Dr Spira told me it was true. He said i would need chemo, and the first question was "will I lose my hair?" he sighed and said, "Yes." I asked how long, and it wasn't until then when he said the chemo would take me up to and perhaps past our wedding day that I started to cry. He was surprised it took me that long, but for those of you who know me know that I'm a fairly strong woman. We talked some more and then met with the nurse. He ordered a bone scan and another CT scan, this time of my chest.
Sarcomas are so rare that only 800 are diagnosed a year. They do not classify sarcomas like they do other cancers. Sarcomas are classified as localized or metatisized. Right now, mine is considered to be localized, but we'll know for sure after the scans next week. Dr Spira seemed optimistic about my prognosis to beat this and move on with life. He said I can do anything I feel up to doing pending my white cell count.
Chemotherapy
My chemotherapy treatment will consist of two different types. First cycle is VAC for two days a week, then 2 week break and the cycle 2 is IE for 5 days then two week break. This will repeat for 14 cycles. After cycle 6, the Drs will decide whether I have another surgery where they take out the complete part of my bone that has been affected or if I just have radiation. Having radiation only will shorten the number of weeks since I won't have to allow for healing time after surgery. I will have the port put in and start my first cycle of chemo the week of Dec 5.
Now?
Right after we got the official diagnosis, we went and told my mom. Sean called his parents and I called my dad and told his wife. Before we even made it home, I had received so many texts from family members it was ridiculous! It's as if mothers have a distribution list that tells everyone at one time what is going on!!! I called my best friends and my "seocnd moms" so they could hear the news from me.... Im so thankful for my Bosses who are fully supportive in "making this work." The Dr said I could work while sitting in the chemo chair and my bosses were perfectly fine with that. I know I won't work 40 hrs a week, but I'll do what I can. Anytime I go into the office, I will have to drive since my risk of infection will be so much greater, no more metro for a while....
I can't say enough how thankful I am for my family and friends. But I am most thankful for my fiancé, Sean, who is standing by me through all this. I don't know if I will ever be able to show him enough how much he means to me.
I hope you will continue to follow me through my journey. If you ever have constant pain that the Dr can't diagnose, dont give up! Keep going until you are satisfied with the diagnosis. It could be something more than just pain. The outcome is definitely not what I was expecting, but Im glad that I now know what is wrong and I can get better.
So, here we go!
