TGIF! I don't have to go to work or to any doctor's appointment for two whole days! Woo Hoo!
I had an appointment with my Endocrinologist today and was hoping to get the results of the 24 hour urine test and Chromogranin A tests. The 24 hour urine test came back as normal and we are still waiting on the CGA test to come back. These test measure certain hormones and proteins that are secreted by paragangliomas/pheochromocytomas. Normally head and neck PGLs don't secrete hormones. However I have been having weird "symptoms" that have been unexplained since August 2005. They include tremors/myoclonic jerks on the left side that started on my jugular artery but now include my shoulder and transient tremors elsewhere. An overwhelming sense of anxiety sometimes accompanied by wild swings in blood pressure. Chest pain which I swear feels like myoclonic jerks in my chest. Muscle spasms on the left side of my neck that feel like charlie horses that you get in your legs. The feeling I've been plugged in and my whole body is lit up like a Christmas tree. Chronic insomnia whenever these symptoms present. A general feeling of doom. Besides the tremors/jerking that always seems to be with me these symptoms are sporadic and occur every few months for a week up to a month (or more) and are actually very debilitating. Stress makes them worse. I also have diarrhea when I exercise and unexplained UTI's that aren't really uti's but tests always show blood in my urine. I'm not sure if those are related but I'll throw them in for good measure.
The symptoms could be explained by the secretion on hormones from the tumors. They could also be explained by several other conditions. At this point I just want some answers. I had hoped for a diagnosis but it looks like I'll have to wait again. I have an appointment on Monday at Cedars Sanai with someone that is supposed to be an expert in these types of tumors and I have a lot of questions for him.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Friday, August 14, 2009
Thursday, August 13, 2009
Almost halfway there!
I'm almost at the halfway point in my radiation treatments. I can't tell you how happy I will be not to have to drive to Westwood everyday! Unfortunately I've started losing my saliva which with the taste buds being gone really really sucks. I had no idea what saliva actually does before I started treatment. It helps break down food as you swallow. So now whenever I eat not only is the food unappetizing but it's also hard to swallow. I guess no more bread for me for awhile. I'll have to get used to a liquid diet. This is crazy to ask because it looks like no one reads this but does anyone have any really good smoothie recipes?
Tuesday, August 11, 2009
Radiation fun..................
The following day I asked to speak to the doctor and got the resident instead of my staff doctor. He actually was very knowledgeable about my case and shared that he had helped work up my treatment plan. He showed me my "book" that is a history of treatment and interesting images of the tumors themselves. Unfortunately, he could not offer me any insight on what had happened the previous day and thankfully it hasn't happened since. I put my questions out there to the message boards at cancercompass.com and I was told that I may have possibly been burned or it was just a fluke. I'm hoping it was just a fluke.
About three days in I was told I needed to have a Swallowing Clinic, Nutritionist and Social worker consult. Am I the only person out there that thinks social workers are highly annoying? The social worker was the first consult. She was helpful in getting my other appointments set up. I've done so much research on the web about radiation on my specific disorder that I felt like the appointment was mostly a waste of time. I already know what the side effects will likely be and that I should have a support network.....blah blah blah................I know she was just doing her job but she really got on my nerves with her voice kept so low and what she thought must be soothing. I just felt patronized. I know this is probably ungrateful of me and I'm a terrible person for thinking it but hey it really is the way I feel.
The second consult was with the Speech Pathologist who I was impressed by. She gave me exercises to do everyday and I will have weekly appointments with her. The last consult was with the nutritionist. This was unfortunately a nightmare experience. They had requested I be there 15 minutes early for my appointment and I was there right on time like a good patient. Then I waited and waited and waited. About an hour and a half into my wait they brought in another patient and I heard the nurse tell her that the doctor had another patient in front of her and she was running very late but not to worry because they would give her priority! Okay can I just say WTF!!!!!!!! By this time I couldn't wait any longer it was time for my radiation appointment. I got up and went to the front desk and asked for my co-pay back. The front desk person was apologetic but the damage had been done. I understand that doctors occasionally may have emergencies but this was a nutritionist. For the life of me I can't think of a single reason to treat a patient so shabbily. Am I wrong to think a doctor should treat my time as important as their own?
That was the day I lost my taste buds. This is an expected side effect from radiation and takes a long time for this sense to come back. I love to eat and love the taste and texture of foods. I'm a foodie who loves just about everything about food so you can see how this would be a sad day for me.
This brings us to now.............I'm 11 treatments in with 17 left to go. So far the side effects I've had are the loss of my taste buds. Thickening of my saliva (yuck!) and general soreness in my throat and chest areas. I've been told I may lose my saliva altogether and the ability to swallow due to soreness in the throat. I'm hoping for the best and if you are reading this blog I'd like to thank you for putting up with my self absorbed whinyness :)
About three days in I was told I needed to have a Swallowing Clinic, Nutritionist and Social worker consult. Am I the only person out there that thinks social workers are highly annoying? The social worker was the first consult. She was helpful in getting my other appointments set up. I've done so much research on the web about radiation on my specific disorder that I felt like the appointment was mostly a waste of time. I already know what the side effects will likely be and that I should have a support network.....blah blah blah................I know she was just doing her job but she really got on my nerves with her voice kept so low and what she thought must be soothing. I just felt patronized. I know this is probably ungrateful of me and I'm a terrible person for thinking it but hey it really is the way I feel.
The second consult was with the Speech Pathologist who I was impressed by. She gave me exercises to do everyday and I will have weekly appointments with her. The last consult was with the nutritionist. This was unfortunately a nightmare experience. They had requested I be there 15 minutes early for my appointment and I was there right on time like a good patient. Then I waited and waited and waited. About an hour and a half into my wait they brought in another patient and I heard the nurse tell her that the doctor had another patient in front of her and she was running very late but not to worry because they would give her priority! Okay can I just say WTF!!!!!!!! By this time I couldn't wait any longer it was time for my radiation appointment. I got up and went to the front desk and asked for my co-pay back. The front desk person was apologetic but the damage had been done. I understand that doctors occasionally may have emergencies but this was a nutritionist. For the life of me I can't think of a single reason to treat a patient so shabbily. Am I wrong to think a doctor should treat my time as important as their own?
That was the day I lost my taste buds. This is an expected side effect from radiation and takes a long time for this sense to come back. I love to eat and love the taste and texture of foods. I'm a foodie who loves just about everything about food so you can see how this would be a sad day for me.
This brings us to now.............I'm 11 treatments in with 17 left to go. So far the side effects I've had are the loss of my taste buds. Thickening of my saliva (yuck!) and general soreness in my throat and chest areas. I've been told I may lose my saliva altogether and the ability to swallow due to soreness in the throat. I'm hoping for the best and if you are reading this blog I'd like to thank you for putting up with my self absorbed whinyness :)
Monday, August 10, 2009
How did we get to this point continued............
I had a total thyroidectomy done on May 12th and that laid me up for two weeks. Generally speaking the worse part of the whole thing was the two days I had to spend in recovery. I was hooked up to machines and they had things attached to my legs as well. Talk about uncomfortable. I'm the type of person that just can't sit and do nothing and laying prone for two days was a challenge.
After the surgery I was referred out to an Endocrinologist and an Oncologist. I still needed to have radiation for the paragangliomas and I'll have to have what is called Radio Active Iodine to kill any remainder thyroid cells. What they do is you go to a hospital and have to take a radioactive pill that literally makes you radioactive for 10 days. I've been told I can't have contact with anyone for that time and will literally have to live in my bedroom and have food delivered to my door. This has been put off until after the regular radiation is completed.
I went to my consultation with the Oncologist and was told that Dr. Berke was right we would have to go ahead with the radiation. I was told I would be called to schedule an appointment to make my mask. It took about three weeks to get the preauthorization for the radiation from Blue Cross and finally I was called into for what they call the "simulation". Whenever they do radiation to the head and neck region they create a mask by making a mold of your face. They put this mask on you during treatment to ensure you are unable to move. Trust me this is something you do not want to experience if you don't have to. I'm not generally phobic and small enclosed spaces don't freak me out but I can't say the same about being held down in this mask during treatment. I go in and make the mask and have another MRI of the Neck/Chest area done. The MRI took 2 hours this time. I was then told they had to work up my treatment plan and would call me to when it was completed. This was another 3 week wait and I was told the length of time was due to complexity of my treatment.
I started radiation on 7/26/09 and the first day I got there they strapped me in for the procedure. All in all it was completely painless. It took about a full hour to get everything set up and for the actual treatment. I had read on the cancer compass website that side effects from radiation are cumulative and aren't normally felt until several weeks in. After the radiation I went back to the dressing room to change. I bent over to pick up my shirt and got what I can only describe as a ball of heat in the middle of my chest that dissipated. I kept getting these "surges" that night and after they were finished I had a soreness in my chest. Kind of like that feeling when you have a chest cold and have coughed too much. Whew.......what the heck was that?
That's it for tonight.....I'll continue the story tomorrow.
After the surgery I was referred out to an Endocrinologist and an Oncologist. I still needed to have radiation for the paragangliomas and I'll have to have what is called Radio Active Iodine to kill any remainder thyroid cells. What they do is you go to a hospital and have to take a radioactive pill that literally makes you radioactive for 10 days. I've been told I can't have contact with anyone for that time and will literally have to live in my bedroom and have food delivered to my door. This has been put off until after the regular radiation is completed.
I went to my consultation with the Oncologist and was told that Dr. Berke was right we would have to go ahead with the radiation. I was told I would be called to schedule an appointment to make my mask. It took about three weeks to get the preauthorization for the radiation from Blue Cross and finally I was called into for what they call the "simulation". Whenever they do radiation to the head and neck region they create a mask by making a mold of your face. They put this mask on you during treatment to ensure you are unable to move. Trust me this is something you do not want to experience if you don't have to. I'm not generally phobic and small enclosed spaces don't freak me out but I can't say the same about being held down in this mask during treatment. I go in and make the mask and have another MRI of the Neck/Chest area done. The MRI took 2 hours this time. I was then told they had to work up my treatment plan and would call me to when it was completed. This was another 3 week wait and I was told the length of time was due to complexity of my treatment.
I started radiation on 7/26/09 and the first day I got there they strapped me in for the procedure. All in all it was completely painless. It took about a full hour to get everything set up and for the actual treatment. I had read on the cancer compass website that side effects from radiation are cumulative and aren't normally felt until several weeks in. After the radiation I went back to the dressing room to change. I bent over to pick up my shirt and got what I can only describe as a ball of heat in the middle of my chest that dissipated. I kept getting these "surges" that night and after they were finished I had a soreness in my chest. Kind of like that feeling when you have a chest cold and have coughed too much. Whew.......what the heck was that?
That's it for tonight.....I'll continue the story tomorrow.
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