Another day, another day of nothing happening. Never before have I been so anxious to get to a doctors appointment. This ain’t your run of the mill check up or visit for a prescription of an antibiotic for an ear ache. This is my life damn it! Let’s get this party started! (insert your own Pink video here) Wouldn’t you want to hurry up and get to the place that is virtually guaranteed to make you fatigued, nauseous, lose your hair in the spot being treated, make you have have trouble swallowing and oh yes, by the way, it will also KILL HE CANCER CELLS IN YOUR BODY! YES! Take me there now! Unfortunately, with such an inviting description of their services the place is jam packed. (I’ll avoid saying people are dying to get in there). Its still another 7 days before I go for the “simulation”. All I can do is wait. If I’m not sitting in an office waiting to see the next doctor I’m sitting at home waiting for the next appointment.
Its quite agonizing trying to pass the time with this lump staring me in the face every morning. Wish I didn’t know now what I didn’t know then. (3 weeks ago) I called the doctor today to see if there was any way they could get me in earlier but no luck. It didn’t seem to alarm anyone I spoke to that its taking so long. Maybe it doesn’t seem like it is to the people on the other end of the phone but they don’t know what its like to be on this end. And you thought waiting for ketchup was bad…
Seems like it’s been a while since I posted an update. Time flies when you’re having fun. It seemed like a long wait for the appointment to start radiation treatment. We finally went for that last Wednesday. Got all the answers to questions like being able to drive there myself, when I will be going etc. It shouldn’t be all that bad. They tell me I should have no difficulty driving myself as long as I don’t end up experiencing any pain that requires medications. There is a lot more involved than just showing up and getting zapped with radiation. The next time I go (which is not until January 31st!!) it will be for the “simulation”. I will be placed in position to make a “mold” of my leg in order to get back into that same position for each treatment. They take an MRI and X-Ray of my leg in order to determine how to line it all up. THEN, I go back the next time and do a “dry run” which means they test it all out and do everything but shoot the actual radiation. THEN the fun will start. 5 Times a week for the next 5 weeks is the plan. The treatment will only take about 15 minutes each day. Side effects are not expected to be severe. Fatigue and possibly some burning and blistering of the skin towards the later treatments should be the worst of it. I am anxious to get started. Its been 18 days since I found out what this is. 9 more days until something else starts to happen to treat it. A few more days after that until anything actually gets done. I find myself wondering whats going on inside of me during the down time before radiation starts. When the doctor told me my lungs were clear on the CT scan and I asked how long would it be before he thinks it would need checking again to which the reply is 3 months, well, I’m an English major-you do the math. I sure hope they know what they’re doing! The only benefit of the waiting is maybe I will be able to deal with my left foot. That is still miserable since having surgery for the Plantar Fasciitis. Still having lots of pain. I need that side of me to be well so the recovery from the surgery on the Sarcoma (on right knee) will be easier. Anyone know where I can get a prescription for these:
I was all excited to write a song to “My Sharona” called “My Sarcoma” but of course, someone already did it last year.
So instead I will just have to post an inspirational song that helps keep thoughts positive:
Seems like its been a while since I updated everything. Having a cold all weekend kind of slowed me down for a while. I’m such a wimp when I get sick. I cant’t do anything. Although I did manage to watch the Giants win Sunday afternoon with a few friends. That was a great game.
As for the plan for the lump on the knee, they finally called me this morning to have me in to the Radiologist on Wednesday. I will be going there at 2PM in Commack. In a way its kind of scary to think I’ll be getting radiation. I don’t know what to expect from it. Are there side effects? Does it hurt? Am I going to be able to drive there myself every day for treatments? How long does it take to do? Soon all those questions and more will be answered. Shortly after the initial appointment there will probably be 100 other questions that come up after I leave. Happens every time.
I guess the saying is true, you never know how many friends you have until you get a truck. Or get Cancer. My luck on this Friday the 13th is I have both.
Its been a tough week of appointment after appointment phone call after phone call to doctors, their assistants, friends and family. Thanks to everyone who has called, text and emailed to see how we are doing. It helps to know you all are thinking of me.
The initial meeting when Dr. Khan at Stony Brook told me the lump was a Sarcoma left me in shock. I didn’t know whether to cry, hold myself together, or just try to run from it somehow. (all of the above happened at some point) It was always in the back of my mind that the biopsy could bring results I didn’t want to hear but time after time each doctor said they didn’t think it was anything. It all seemed surreal when I actually heard the words. NOW WHAT comes to mind…
Dr. Khan is one of the best, nicest and caring/sincere doctors I have ever dealt with. In a way I feel bad that I wont be dealing with him for the surgery and treatment. The decision to stick with Sloan for everything is partly because of their reputation as the best and also because insurance coverage. EVERYTHING is covered, no co-payments at Sloan under our plan. Hard to go anywhere else. (Dr. Khan called while I was writing this to tell me there was absolutely nothing else found on the PET Scan! Hooray, some good news!)
As of now, the diagnosis is a “Pleomorphic Sarcoma”. Its an adult soft tissue sarcoma. It’s hard to find much about that specific one online. They basically have no symptoms in the early stages other than a lump somewhere. Mine causes ZERO pain, zero discomfort and does not effect my leg/knee in any way. I didnt even know it was there until I bumped it on the console of the car. Right now mine is considered borderline low grade. The grade in Sarcomas relates more to the size of it. Mine is also considered a slow growing and spreading type. Luckily, it seems I did get to it soon enough before spreading and causing major problems. The treatment plan for me is Radiation therapy for 5-6 weeks, then I wait 4-6 weeks to see how it heals, then surgery to remove the tumor. The idea is to shrink the tumor so there is less chance they will have to remove the Peroneal Nerve and less muscle/skin around it. On the MRI you can see how close it is to the tumor. They tell me there is a 50/50 shot it can be saved. Nerves don’t like radiation, as Dr. Healy at Sloan says. If I lose that nerve I will end up with foot drop and have to wear a brace on my foot. I’m already prepared for that. If thats the worst thing that happens I guess I will accept it.
There are still many variables as to how this will turn out. I am optimistic it will be ok. The biggest hassle is dealing with insurance companies and doctors. What a pain! I’ll try to update this more often. This cold is wearing me down now. Time for Nyquil and bed. Thanks again for everyone checking in to see how its going. Its a waiting game now. Feel free to call if you want more details. Its hard to get it all on here.
This was me on Wednesday. I had the full body PET Scan. Still waiting for results of that. Here is info about PET Scans. I got a card for the day that shows I am radioactive in case I get stopped by police who have detectors! The world sure has changed since 9/11! http://www.medicalnewstoday.com/articles/154877.php they inject you with the radioactive dye and also I had to drink almost a quart of Barium Sulfate. That was pretty awful after the first cup. But overall not too bad. http://www.mayoclinic.com/health/drug-information/DR600237