Cycle 2 = DONE as my Future FIL says, I'm 1/7 done!!
It's Christmas day and we are spending our time at the in-laws in Central Virginia. Although I'm not feeling 100% it's great to be able to spend time with family and enjoy life.
So, Chemo last week. Well, for the most part it was fairly uneventful. I felt great everyday except Thursday when I was a bit queasy. Let's see, Monday my brother took me and then Cibrina came by later that afternoon. Tuesday was my dad's birthday and what a better way to spend a milestone birthday than with your daughter at chemo, right? Cibrina and Civanna came by for a visit as well.... Wednesday my future MIL drove up and took me. We also had a visit from my awesome sista, Stephanie. Thursday was a wedding party day, Cat took me in the morning then Hammel (Jen) came and brought me lunch and took me home. Friday my mom took the reigns. I was lucky that my Dr let me finish early on Friday so we could get home and I could nap before heading out to the mountain for the night.
Everyday was about the same. Come in, draw labs through my port, Mensa (protects my bladder and kidneys), nausea and steroid meds, then the first 2-hour drip of chemo (Ifosfamide), another Mensa, then second 2-hour drip of chemo (Etoposide), followed by the last Mensa. The whole time I received hydration for a total of about 3 liters a day, yes, 3 liters. I also drank water all day so I am always bloated/swollen. Needless to say I use the restroom, A LOT.
I haven't felt great these last two days, not nauseated, just not.... Me. And the drugs are definitely taking a toll on my hair, or lack thereof at this point. I've decided to just shave it off, kind of wish I had already done it but it's all hind sight at this point. I also had to buy an eyebrow pencil, since mine are thinning..... So funny because my eyebrows are so thick and dark to begin with.
After the long cycle of chemo, I have to receive a shot (neupogen) everyday for a week to boost my white blood cell count. The Dr is allowing me to have my shots administered at home over the weekend, instead of having to go into the office. So yesterday my mom administered the shot, no big deal, right? She's a Nurse Practitioner. Today, my lovely hubby-to-be administered the shot. I could tell he was so nervous, but he did a great job and it hurt only as much as it was supposed too. <3
I hope everyone has had a wonderful time with their families this holiday season. I know I feel totally blessed to have so many people by my side throughout this process, it's almost overwhelming how much support I have. I just have to say it feels pretty awesome.
Enjoy the rest if the day, and Happy New Year! Love you all!
2012, here we come....
Sunday, December 25, 2011
Wednesday, December 14, 2011
Lab Work
First day of labs was today. The nurse was so cute when I came in, she looked at me and said, "Wait, there's something different....." haha, it was my hair :o) I only have to go in for labs once after the short cycle, I have to go EVERYDAY (except weekends) after the long cycle.
So, what did my blood say? oh yes, that the chemo is working and that I am susceptible to EVERYTHING right now. White blood count, waaaaayyyyy down, red blood count, down, and platelets, down. No transfusion needed, yet, but it's inevitable (who wants to donate blood?). Perhaps a platelet transfusion as well at some point. Can I say it enough? Good times.
What does all this "low" stuff mean? Well, no grocery shopping (oh darn :o), no mall shopping (thank goodness for online shopping :o), no going into the office for work, wait... what??? That was my sanity!! I actually felt normal when I could go into work. Now, I must sit my happy rear at home and work in the comfort of my pj's. Instead of chatting with my co-workers, I get to chat with my dogs, who don't talk back but can be just as distracting :o) AND I get to wear a beautiful blue mask.... don't worry, I totally ROCK the blue mask, especially with my "sassy" hair cut!
Tomorrow is wig fitting day at the American Cancer Society. They give one free to all cancer patients who will lose their hair, how awesome is that?
Well, I won't be posting again until after I finish the next cycle, 5 days next week 6-7 hours a day. I'm going to feel awesome.... then it's Christmas! PRESENTS!! I've been pretty good this year, I think Santa will agree ;o)
Until next time everyone. Merry Christmas!
So, what did my blood say? oh yes, that the chemo is working and that I am susceptible to EVERYTHING right now. White blood count, waaaaayyyyy down, red blood count, down, and platelets, down. No transfusion needed, yet, but it's inevitable (who wants to donate blood?). Perhaps a platelet transfusion as well at some point. Can I say it enough? Good times.
What does all this "low" stuff mean? Well, no grocery shopping (oh darn :o), no mall shopping (thank goodness for online shopping :o), no going into the office for work, wait... what??? That was my sanity!! I actually felt normal when I could go into work. Now, I must sit my happy rear at home and work in the comfort of my pj's. Instead of chatting with my co-workers, I get to chat with my dogs, who don't talk back but can be just as distracting :o) AND I get to wear a beautiful blue mask.... don't worry, I totally ROCK the blue mask, especially with my "sassy" hair cut!
Tomorrow is wig fitting day at the American Cancer Society. They give one free to all cancer patients who will lose their hair, how awesome is that?
Well, I won't be posting again until after I finish the next cycle, 5 days next week 6-7 hours a day. I'm going to feel awesome.... then it's Christmas! PRESENTS!! I've been pretty good this year, I think Santa will agree ;o)
Until next time everyone. Merry Christmas!
Wednesday, December 7, 2011
Cycle 1 COMPLETED!
I'm proud to say that I have completed Cycle 1 and only have 13 more to go!!! Can I get an AMEN??
It all started Monday morning when I went to Ffx hospital to have my medaport placed. The surgery only took about 45 mins, and I was "out in left field" the whole time. It was really strange being able to hear and partially open my eyes to what was going on. The Dr had numbed the area, so I couldn't feel anything, but I recall at one point I flinched and he said, "Did you feel that?" and then he told the nurse to up my medicine, haha! When I was finished, they brought me back to center and I waited for them to remove all of the lines and covers off of me then I moved myself from the table to the stretcher.
The rest of the day was fairly easy. Did some work on the computer, slept and tried not to mess with the access point on my chest. The part that hurt the most was the incision on my neck where they connected the tube to my vein. It's fine now, but for that first day, it was difficult to move my neck.
Tuesday was my first day of chemo. My stepmom, Becky, took me. It's great because she already has Tuesdays off of work so this was perfect. This day was LONG. We were there from 845 - 315. I brought my whole setup with me, laptop, notebooks, iPad (thanks boy), magazines, etc. The nurses started with hydration and mesna, the medicine to protect my bladder and kidneys from the chemo. I received this in three doses, three hours apart. Then they gave me a steroid and nausea meds, then the first round of chemo. It was covered in a green bag, which was kinda scary in itself. That dripped through me for 2 hours. Hydration continued throughout the day. The last two chemos for the day were pushes, which means the nurse just pushes them through my port IV instead of them dripping. One of them is red in color, which obviously would cause my urine to be red, cool stuff, huh? Anyways, after that and another round of mesna it was time to go home. I had gained two pounds of fluid and felt like a stuffed sausage :o(
The ride home was fine, I got home and took the dogs out, fed them, and then..... it hit me. NAUSEA, oh my goodness. I took one of my medicines, but not soon enough. I was out the rest of the night with nausea and an awful headache. I couldn't eat a thing; I laid there in the dark, in the fetal position. Luckily I was able to sleep fairly well, but oh man that was simply awful.
Today was different. I woke up to find that my access points had somehow come loose and bled under the covering to my access points. It freaked me out a little bit and didn't help the fact that I was still feeling sick this morning. My mom took me today, it was nice because she is a Nurse Practitioner, so when I freak out, she calms me down.... When I got to the Drs Office I told them about my night, the nurses told me what I should do from now on in order to combat the nausea and headaches. Today was simply hydration, one push of the red chemo and some anti-nausea meds because I was having such a difficult time. Today we were in at 945 and out at 1215. Phew. I came home and slept with the dogs for a few hours, got up and did some work, and slept again. I think that's also the key, sleep, sleep, sleep.
Tonight has not nearly been as bad. I've take the medicine as advised by the nurses and so far so good. I would not say I am 100% but I am at least 80% in the whole grand scheme of things. Yesterday I could not even look at a computer screen and today I just wrote this whole post. It's going to be a learning curve and I'm so glad so many of you are on board throughmy journey.
1 Cycle down, 13 more to go!!!
It all started Monday morning when I went to Ffx hospital to have my medaport placed. The surgery only took about 45 mins, and I was "out in left field" the whole time. It was really strange being able to hear and partially open my eyes to what was going on. The Dr had numbed the area, so I couldn't feel anything, but I recall at one point I flinched and he said, "Did you feel that?" and then he told the nurse to up my medicine, haha! When I was finished, they brought me back to center and I waited for them to remove all of the lines and covers off of me then I moved myself from the table to the stretcher.
The rest of the day was fairly easy. Did some work on the computer, slept and tried not to mess with the access point on my chest. The part that hurt the most was the incision on my neck where they connected the tube to my vein. It's fine now, but for that first day, it was difficult to move my neck.
Tuesday was my first day of chemo. My stepmom, Becky, took me. It's great because she already has Tuesdays off of work so this was perfect. This day was LONG. We were there from 845 - 315. I brought my whole setup with me, laptop, notebooks, iPad (thanks boy), magazines, etc. The nurses started with hydration and mesna, the medicine to protect my bladder and kidneys from the chemo. I received this in three doses, three hours apart. Then they gave me a steroid and nausea meds, then the first round of chemo. It was covered in a green bag, which was kinda scary in itself. That dripped through me for 2 hours. Hydration continued throughout the day. The last two chemos for the day were pushes, which means the nurse just pushes them through my port IV instead of them dripping. One of them is red in color, which obviously would cause my urine to be red, cool stuff, huh? Anyways, after that and another round of mesna it was time to go home. I had gained two pounds of fluid and felt like a stuffed sausage :o(
The ride home was fine, I got home and took the dogs out, fed them, and then..... it hit me. NAUSEA, oh my goodness. I took one of my medicines, but not soon enough. I was out the rest of the night with nausea and an awful headache. I couldn't eat a thing; I laid there in the dark, in the fetal position. Luckily I was able to sleep fairly well, but oh man that was simply awful.
Today was different. I woke up to find that my access points had somehow come loose and bled under the covering to my access points. It freaked me out a little bit and didn't help the fact that I was still feeling sick this morning. My mom took me today, it was nice because she is a Nurse Practitioner, so when I freak out, she calms me down.... When I got to the Drs Office I told them about my night, the nurses told me what I should do from now on in order to combat the nausea and headaches. Today was simply hydration, one push of the red chemo and some anti-nausea meds because I was having such a difficult time. Today we were in at 945 and out at 1215. Phew. I came home and slept with the dogs for a few hours, got up and did some work, and slept again. I think that's also the key, sleep, sleep, sleep.
Tonight has not nearly been as bad. I've take the medicine as advised by the nurses and so far so good. I would not say I am 100% but I am at least 80% in the whole grand scheme of things. Yesterday I could not even look at a computer screen and today I just wrote this whole post. It's going to be a learning curve and I'm so glad so many of you are on board throughmy journey.
1 Cycle down, 13 more to go!!!
Thursday, December 1, 2011
The Scans and the Chemo Schedule
Well, it's officially been just over one week since my diagnosis. I attended a Chemotherapy class this past Tuesday where the nurse taught us what we can expect from the drugs we will be given. It was informative and it gave me a greater sense of reality. Can we say overwhelming?
After the class, my awesome sister-in-law, Judy, took me over to the Life with Cancer house. She interned there for a year during graduate school. This place seriously blew me away. Everything there was free of charge, all of the exercise classes, counseling, all the arts classes, etc. They have a group for Young Adults with cancer that I'm probably going to join. They meet once a month at the 'House' and sometimes outside the House as well. So I'm excited about getting involved with all the House has to offer.
Yesterday I had two scans. One CT scan of my chest, and the other was a bone scan. I am happy to report that they both came back CLEAR!!!! NO SPREADING (mets)!!! SO EXCITED!!!
After the scans yesterday I had to get a flu shot. I typically don't get them since I tend to always get sick when I do, but because my immune system will be compromised, they suggested I get the shot. I also received my chemo schedule. Wow, this is going to be hard. Next Monday I will have my port placed. Tuesday I will start chemo. The first day is about 6-7 hours long. Wednesday will be my second day but will only be about 2 hours. Then on Thursday I have to get a shot to boost my white blood cells, which means another trip to the Drs. The following week, I only have to go in once for lab work. Dec 19-23 is my first full week of chemo. Seven hour days starting at 9am. I will have to get white blood cell boosting shots every day for a week after this and go in for lab work at least 2-3 times. Phew. We are hoping that since my mom is a Nurse Practitioner that the Dr and my insurance will clear her to give me the shots everyday so I don’t have to go to the office, but that hasn’t been finalized yet.
For those of you who don't know, I hate needles. I've obviously had to grow out of that fear since all of this has been going on, but I remember a scenario when I was prob 12 yrs old of the Dr trying to prick my finger to get just a small drop of blood. I totally panicked and fought back, over a small prick. If only I had known then what I know now, I would kill for a small prick vs. the countless number of blood draws and IVs I've been through so far. haha :o)
Today I had to go to the dentist. I found out during the chemo class that I wouldn't be able to continue my routine checkups because the risk for infection would be greater. Your mouth contains all kinds of bacteria and since my immune system will be compromised, they suggest you get the cleaning before or wait until you are finished. Well, I went for the former just to make sure there wasn't anything wrong before I started treatments. I had to pay out of pocket since I wasn't due for a cleaning until February and I've already gone twice this year, but it is worth it. I received a clean bill from the dentist as well!!! They also gave me a whole box of sample mouthwash that was suggested we get for dry mouth. I was more excited about receiving this for free than the fact that I got a clean bill of health!
So, just wanted to post my news about the scans to let everyone know their thoughts and prayers WORKED! I'm so thankful for all of you, for your support and for your words of encouragement.
Ok, now on to the Chemo. I'm ready!
After the class, my awesome sister-in-law, Judy, took me over to the Life with Cancer house. She interned there for a year during graduate school. This place seriously blew me away. Everything there was free of charge, all of the exercise classes, counseling, all the arts classes, etc. They have a group for Young Adults with cancer that I'm probably going to join. They meet once a month at the 'House' and sometimes outside the House as well. So I'm excited about getting involved with all the House has to offer.
Yesterday I had two scans. One CT scan of my chest, and the other was a bone scan. I am happy to report that they both came back CLEAR!!!! NO SPREADING (mets)!!! SO EXCITED!!!
After the scans yesterday I had to get a flu shot. I typically don't get them since I tend to always get sick when I do, but because my immune system will be compromised, they suggested I get the shot. I also received my chemo schedule. Wow, this is going to be hard. Next Monday I will have my port placed. Tuesday I will start chemo. The first day is about 6-7 hours long. Wednesday will be my second day but will only be about 2 hours. Then on Thursday I have to get a shot to boost my white blood cells, which means another trip to the Drs. The following week, I only have to go in once for lab work. Dec 19-23 is my first full week of chemo. Seven hour days starting at 9am. I will have to get white blood cell boosting shots every day for a week after this and go in for lab work at least 2-3 times. Phew. We are hoping that since my mom is a Nurse Practitioner that the Dr and my insurance will clear her to give me the shots everyday so I don’t have to go to the office, but that hasn’t been finalized yet.
For those of you who don't know, I hate needles. I've obviously had to grow out of that fear since all of this has been going on, but I remember a scenario when I was prob 12 yrs old of the Dr trying to prick my finger to get just a small drop of blood. I totally panicked and fought back, over a small prick. If only I had known then what I know now, I would kill for a small prick vs. the countless number of blood draws and IVs I've been through so far. haha :o)
Today I had to go to the dentist. I found out during the chemo class that I wouldn't be able to continue my routine checkups because the risk for infection would be greater. Your mouth contains all kinds of bacteria and since my immune system will be compromised, they suggest you get the cleaning before or wait until you are finished. Well, I went for the former just to make sure there wasn't anything wrong before I started treatments. I had to pay out of pocket since I wasn't due for a cleaning until February and I've already gone twice this year, but it is worth it. I received a clean bill from the dentist as well!!! They also gave me a whole box of sample mouthwash that was suggested we get for dry mouth. I was more excited about receiving this for free than the fact that I got a clean bill of health!
So, just wanted to post my news about the scans to let everyone know their thoughts and prayers WORKED! I'm so thankful for all of you, for your support and for your words of encouragement.
Ok, now on to the Chemo. I'm ready!
Friday, November 25, 2011
How do you diagnose Bone Cancer?
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!
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!
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