2 1/2 Weeks Post Radiation

It's been two and a half weeks since the end of radiation and I'm getting my energy back. I feel much much better. The only problem I'm still having is the lack of taste buds and saliva. Someone on a support board told me if it doesn't come back soon I'll just get used to it.

I had my second opinion today at Cedar's Sinai today. Yes I managed to get there without getting lost this time! The doctor I saw is a specialist in Neuroendocrine Tumors and one of the few in the country that really specializes in what I have. The plan is to get a full body scan to make sure there is no more of these guys hiding and to have genetic testing. The doctor feels there is an 80% chance of it being genetic. I'm crossing my fingers that the insurance company won't give me a hard time on covering this. I've been told that they may not approve it because I don't have a family history of the disease. My argument is that since I was adopted how can they say I don't have a family history. No one knows..........

Now that radiation has ended I have fewer appointments and so I'll probably be posting less often. TTFN!

My final week of tx

Okay I've started my final week of treatment and am really looking forward to this being done. New side effects this week are a thick and sticky form of saliva that coats the mouth and tastes awful, weird hiccups, and increased muscle spasms in my neck. These used to happen infrequently and would go away for long periods of time. Unfortunately, now every time I yawn or stretch I get these awful spasms. They feel kind of like a charlie horse but in your throat. I had my last weekly doctors appointment today and asked him if these are normal. The answer is no but it is possible the radiation is irritating nerves that have already been damaged by the tumors. He gave me a prescription for Baclofen and hopefully it will stop the spasms and the hiccups. He thinks these are related. I looked up the drug and it appears to be a strong muscle relaxer and anti-seizure medicine and has a warning about using machinery or needing to be alert. The last drug of this type I was given "Neurontin" gave me short term memory loss. I felt like Dory in "Finding Nemo" I thought I'd have a grasp on something and then turn around and that thought was gone. Thank goodness I've asked for some time off this week. The idea of a five day weekend is really helping me get through this week.

On the work front I have some good news, I've finally managed to hire an assistant! Woo Hoo! This will free up my time to take on more of the recruiting and hopefully lead to that promotion my boss has been hinting at.

TTFN

Got lectured.........

In the nicest way possible about needing to keep up my caloric intake yesterday during the Swallowing Clinic appointment. So today I decided to drink the Ensure I had bought just in case. All I can say is YUCK!!!! It's basically soy formula for adults. None the less I forced myself to drink it then promptly brushed my teeth afterwards. I've also discovered the next "side effect" of the radiation. My throat is raw and since I have 2 1/2 weeks left I'm guessing it is going to be painful before all is said and done. This is going to make my calorie intake even harder to do. I told the Speech Pathologist that there are many people that would pay good money for a diet plan that was absolutely guaranteed to produce results such as the one I'm on. If only there was a way to mimic the side effects without the actually radiation I could market it and make a bundle!

TGIF!

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.

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?

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 :)