Cynicism and Medicine

Okay, I've just accepted the fact that I'm going to have to wait at least six months to see if the new tumor is growing or if there are more. I'm not a patient person so I'm finding this incredibly frustrating. Waiting for an elevator makes me crazy so you can imagine someone like me being told I have to wait six months to a year for another freaking scan. Agh............ But really I can do this. I will find my Zen and calmly accept this waiting period. Can't I?

The radiation has done a number on my spine so I started physical therapy today. This is another one of the medical sciences that I have always thought of as kind of bogus. This idea is regularly enforced by the engineers and doctors I work with that do medical research and development. One of the doctors explained to me that medicine is a "practice". They practice on their patients until they find something that works and even then it doesn't work all the time. Meaning that half the time they are making it up as they go along. This doesn't make me feel very secure even though I carefully picked my doctors for their specific expertise. Someone please talk me down from my cynicism and impatience.

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!

Who knew............

Down twenty pounds and still can't taste anything. The doctor said it could take a couple of months for the taste buds to come back and that my saliva will take even longer and may not come back all the way. Funny thing happened yesterday. It was my bosses birthday so I had to get her cake and I got vanilla ice cream to go along with it. You know that saying that when you lose one sense others get stronger? Well I was eating the ice cream because it goes down okay but I had bought vanilla bean instead of plain vanilla and could actually feel the tiny vanilla beans in my mouth. I'd noticed this before when eating yogurt I could really feel the seeds from the fruit but the vanilla beans were unexpected who knew I'd be able to feel something so tiny. Weird!

I week post radiation

It's one week post radiation and I'm feeling about the same. I was warned that I would continue to "cook" for a couple of weeks so the side effects could still peak. The problem I have is eating. It's not that I can't eat or that it's painful but that I just can't seem to force myself to eat. Everything tastes like cardboard so I don't WANT to plus with the disgusting thick mucus I tend to gag on everything even water. I had been chugging ensure but after last weeks fiasco I can't even look at one. Yesterday my total intake was a bannana, mini Haagen Daz ice cream bar and about 32 ouces of water. About 350 calories! You would think it would be really easy to just to eat something but it's like a mental block where I just can't force it down. I'm really hoping I have a quick recovery because if this keeps up for a long time I'm going to be in trouble.

Aghhh............worst day.

I had possibly the most embarrassing thing happen when I visited the Speech Pathologist today. Part of the appointment is doing exercises to make sure all my swallowing mechanisms work. She makes me gargle ten times counting to ten, do ten strong swallows, and chug a lug 3 ounces of water. Today while chug a lugging, unfortunately the water didn't want to stay down. I drank it then it all came up again along with the 8 ounces of Ensure I had for lunch. I threw up all over the doctors office! The doctor was very nice about it and since she does this all the time said she's seen worse. All this while cleaning up my mess. I'm probably being silly being embarrassed by this but I can't seem to help myself. I usually don't list names here but Dr. Lisa Bolden at the UCLA Swallowing Clinic gets the prize for the best bedside manner I've ever seen.

Besides the embarrassment factor I think I'm going to have to see the doctor again this week to ask him what to do about this and also the hacking cough I've developed at night because of the thick mucus that just seems to sit in my throat.

Thanks for taking the time to read tonight. I hope I haven't grossed you out too much.

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

Only one week to go!

Another week down and just one more week to go. I'm feeling remarkably well and am looking forward to the weekend. On the agenda this weekend......shopping, cleaning and laundry, just the normal weekend stuff. Krysta and I usually go out to dinner and a movie on Fridays and she is missing our regular routine. She asked to go to "Famous Dave's" a BBQ place here in town and was a bit frustrated when I said no. I can't possibly go to a restaurant where I can smell the yummy food but can't eat! Talk about torture! Which is kind of funny because the last movie we saw was Julie and Julia (Meryl Streep is awesome) and that is all about food too! I think I might let her pick the movie to make it up to her. Just as long as it's not Halloween II...........

Monday, Monday

Well actually it's Tuesday and I didn't get a chance to write this yesterday. Four weeks down and two to go. Yesterdays appointment went fine and I saw the doctor for my weekly visit. Since, it's UCLA the doctor always has medical students with him. The last two appointments It's been fairly clear these are new students still a little wet behind the ears. With my diagnosis sometimes I feel like I've been pulled into an episode of "House". I could hear the group discussing me before they came in the room and the doctor actually told me that they rarely see someone with my condition. This a theme on every doctors visit I have at least initially. My Endocrinologist is also a professor at UCLA and at first he was skeptical of the diagnosis and then after we went over all the images and studies he told me he was going to present me as a case study to his class. It is interesting to see brand new medical students learn but sometimes I feel like I'm being looked at like a specimen.

I was told yesterday that they expect my side effects to get worse and that normally starts about the fourth week and continues until a month or so after I'm done with radiation. This is because I will continue to "cook" for awhile even though the treatments are over. So far they have been mild but my voice has definitely been affected and I'm at whisper level now. The doctor assured me the voice weakness and sore throat are temporary.

On an up note today is the first day of school and Krysta is excited about going back to regular school after our attempt at home schooling last year. I'm excited because this means she will actually leave the house everyday!

That's it for now. For everyone that reads this thank you for taking the time and for Mom, Jeanne, Susan and Lisa, I love you and thank you for your support!

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!

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 :)

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.