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

101 degrees today

It was crazy hot today here in Socal and it made me feel so lethargic I didn't get much done. Almost all of August we've had a repeat of "June Gloom" which I knew couldn't last forever. So summer has returned with a bang and wildfires to boot. I just hope we don't get them in Simi this year.

Last night instead of seeing a movie we went to the mall for a little retail therapy. I decided to try a Jamba Juice smoothie. I got a small strawberries wild with a protein boost and it took me about two hours to drink it. I'm not sure if it had a lot of acid in it from the fruit juice or was just too much for my stomach but I was sick all night.

Tomorrow, Caroline wants to take the boys to the park to play. Those little guys sure do have a lot of energy. Here's hoping it's not too hot.

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!

Excellent Article on Slate

I read this article on Slate this morning about Health care Reform. The next time someone says they are against an evil government health care plan, ask yourself if that's what they really think or is it good enough for them. Because it seems apropos for this discussion, I'm attaching one of my all time favorite cartoons.

http://www.slate.com/id/2225664/

As we've noted before, if you add the failure of employer-linked health care with Medicare, Medicaid, government employment, and the military, a huge chunk of Americans already have taxpayer-funded health care. It's a diverse lot. Rich old people and poor kids, university professors, congressmen, teachers, DMV clerks and their families. Pretty much everybody you see on CNBC yelling about socialism? Their parents and grandparents (if they're still living) get taxpayer-funded health insurance. Mine do. Charles Grassley, the septuagenarian Iowan who is doing his darnedest to torpedo meaningful health care form, has it. Arthur Laffer, the 69-year-old economist who went on television and suggested that Medicare isn't a government health care program, is eligible for Medicare. Dick Armey, who spent many years teaching at a state university and served several terms in Congress, has had taxpayer-funded health insurance for much of his adult life. Same for Rudy Giuliani and Newt Gingrich. Democratic senators like Max Baucus, Kent Conrad, and Ben Nelson? Yes, yes, and yes. Law professors at the University of Tennessee have it. The employees of George Mason University, which houses the free-market Mercatus Center, do, too. Policy analyst Betsy McCaughey, currently reprising her 1990s role of health care bamboozler, will be eligible for it in a few years' time.

Obvious? Yes. But it's still worth pointing out. All these people rely on—or have relied on—the government to pick up the tab for their health care and for their health insurance. And that hasn't caused euthanasia or the abolition of private property. Funny how you don't hear any complaints from worthies about taxpayer-funded health insurance when it's covering them, their staffs, and their loved ones. For many of these people, especially the older ones, there literally is no affordable alternative. Insurance companies prefer to insure healthy people, not sick people—that's how they make money. And older people are more likely to run into health trouble requiring expensive care. Dick Armey, who is suing to get out from under the tyranny of Medicare, is apparently under the illusion that insurance companies are really eager to cover 69-year-old men at a low cost. House Minority Leader John Boehner is a 59-year-old smoker whose skin has an orange hue. What do you think Aetna would charge him per month for a good policy?

After the stock-research scandals of the 1990s, analysts were required to disclose whether they or their families owned stock in the companies they were talking about. That has since emerged as a key gauge of credibility. I'd like to see something similar for the health care debate. Before they weigh in on the prospects for health care reform, interview subjects—pundits, talking heads, policy wonks, editors, members of Congress—would have to disclose whether they or their family members rely on taxpayer-funded health insurance.

Such a disclosure might eat into valuable airtime. But it would clarify the debate. We're witnessing a conversation between various people who are dependent on taxpayer-funded health insurance telling the public why tens of millions of people shouldn't have access to it. Most of the opponents of universal health care don't really think the public provision of health insurance services is immoral, evil, or socialistic—after all, they'd be at risk of bankruptcy without it. And most aren't opposed to deficit spending as a matter of principle. (How do they think we're paying for the Medicare prescription drug entitlement the Republicans rammed through a few years ago?) In effect, they believe that taxpayer-funded health insurance is appropriate and crucial for some people—themselves, their staffs, their parents—but not for others; that some are entitled to it, and that others simply aren't. In Washington, unlike at Whole Foods, they want us to believe that what's good for the goose will poison the gander.

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!

Manic Mondays..............

Today was a "Monday" in just about every sense of the word. I've been interviewing assistants at work and finally found someone we all liked who said she was really looking for part time work. I did the background check and today I was ready to make an offer. She turned me down flat saying she needed a job with benefits. While I can certainly understand needing benefits the job she applied for plainly said it was part time and I made sure she knew what "part-time" meant. I'm back to square one sifting through resumes of folks that think that once you see how fabulous they are that you are going to offer them full time and more money.

I had my appointment at Cedars Sinai today with the Endocrinologist specialist. I had downloaded a map and directions from Mapquest and the directions turned out to be wrong. I got lost and never did find the place, I kept driving around trying to find one of the streets on Mapquest. I should have known better. The last time I drove to that part of Los Angeles I got hopelessly lost as well. I guess I'll have to reschedule and hope they don't think I'm a flake. Next time I'll use Google.

The funny thing was I was able to locate UCLA just fine using the surface streets and went to my radiation appointment early. I hadn't eaten yet and knew I had to force something down. There's a Burger King around the corner from the doctor's office. I ordered a cheeseburger and settled down to take a bite. Now I've shared with you my taste buds are no longer working but there's noting wrong with my sense of smell. I can't even describe the disappointment of biting into a cheeseburger and having the taste not correlate with the smell that is wafting everywhere. :( This is why they suggest a liquid diet of protein shakes because eating regular food is so disappointing that you have to force yourself to eat. There is an upside though, this is a diet I will not be tempted to cheat on.

Radiation went fine as usual and I had my weekly appointment with the Oncologist. I asked him how long it would take for my taste buds to return. He said it could be months and my saliva glands could take longer. I guess I'm going to be on this "diet" for a very long time. Maybe I'll be able to fit into my skinny jeans?

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?

Short post tonight...........

I'm exhausted and I know I shouldn't feel this tired. I had four appointments today all crammed within a 2 hour time frame. I worked until 2:30pm then I drove to UCLA from Chatsworth. This requires taking the 101 and 405 freeways. It normally takes an hour to drive the twenty miles from my work. Today I made it in 40 minutes. First I had to go see Dr. Geffner about the blood tests he wants to have done before my friday appointment, then I had to see the oncologist for my weekly visit, after that the actual radiation, then the speech pathologist and finally I had to sit and wait in the UCLA lab for my blood to be drawn. After all that fun I got back on the freeway and drove home which took an hour and a half. Four hours on just driving and doctor's appointments and I'm exhausted. They did warn me that fatigue would catch up to me. I think I'm going to try going to bed early tonight and maybe I'll be bright and chipper tomorrow.

Dog Story

Funny thing just happened. A raccoon is sitting in my front yard teasing the dogs. I have a golden retriever named Brinkley and a beagle named Poochie and they both HOWL at any trespasser human or furry. It's almost 11pm and I'm sure the neighbors are loving us right now. Must go get them inside the house before animal control is called! :)

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.

How did we get to this point..................

I was recently diagnosed with multiple Paragangliomas. This is a very rare condition that I had never heard of prior to four months ago. My journey to the diagnosis has taken seven years. It all started back in 2002 when I noticed my voice was hoarse. I had just had a cold so I thought it must just have been a bad cold that didn't seem to want to go away. The hoarseness continued but most of the time my voice was fine so I didn't really think about it. Then in 2003 I went to see my primary care physician (pcp) who referred me to an Ear, Nose and Throat specialist. The specialist looked down my throat and ordered an MRI. Once the results were back I was told they could not determine the reason but that my left vocal chord was paralyzed. There is no cure but they could inject collagen in the the vocal chord to make my voice sound better. Thinking that was all there was to it I had the procedure done and forgot about it until my voice started getting worse again.

Fast forward to 2008, I just had changed jobs and of course I got a cold that made my voice quit on me. Instead of looking for a quick fix this time I decided to go to UCLA to see the expert on voice disorders. They have a procedure that can reinnervate the paralyzed vocal chord. I went to see Dr. Berke and he ordered an MRI (no suprise there) but also a PET CT scan and then an ultrasound of my neck. Now this is where things started to get a little sticky. I had just started a new job..........and we all know what the economy is like. I was taking off all this time for doctor's appointments and knew that I would not be able to have the surgery due to the fact I had not been employed a year. I work in HR and no one knows better than me that an employer does not have to grant you medical leave time unless you have been there a year. It's with that in mind that I decided to put off the surgery a year.



The year is 2009 and with my freshly minted year of service under my belt, I decided to go back and see the doctor about that surgery again. Back to Dr. Berke I went with a determination to get this done. This time they send me to get a biopsy and a MRI/MRA of my head, neck and chest. It's crazy but I never suspected there could be anything wrong other than the unexplained paralyzed vocal chord. I don't smoke, drink, do drugs or chew tobacco plus I've been tested many times and no doctor has ever said they see anything wrong on any of the tests. Since they made me have all these tests, I decided to do something I had never asked before. I wanted to know the results of the tests. The doctor's office said I would have to come in and discuss them with the doctor. Now I was starting to get a little scared but I was assured by all my friends that this was normal and it was probably nothing.



Unfortunately, it was not nothing. The MRI from 2008 had shown three lesions in my neck/chest area that were called Paragangliomas which are considered benign. Plus as an extra side note, the biopsy showed I had Thyroid Cancer as well. That is four tumors in my neck/chest and all I had wanted was to have my voice fixed. Dr. Berke explained that the paragangliomas were inoperable because they were wrapped around my carotid artery and jugular artery and the surgery would be too risky. However since they were causing my cranial nerve issues (vocal chords) that I would need to have radiation to stop their growth. I would also need to have surgery to remove my thyroid as soon as possible and would need radiation for that as well. As for my voice we would need to wait until after the surgery for the thyroid to discuss it further.

At this point I haven't really panicked yet. Thyroid cancer has a nearly 100% cure rate and the other tumors are benign right? However, I am very frustrated about my voice which is what started me off in search of a cure in the first place. Okay you can call me shallow but that is my main concern at that point. I mentioned before that I work in HR and need my voice to be able to communicate with employees and management. Believe it or not how you sound goes a long way in determining how you are perceived by everyone around you. Not to mention social situations, have you ever gone on a date and not had the ability to be heard or understood?

This is it for tonight. I'll be back tomorrow with more on radiation and frustration with insurance and doctors.

TTFN