Stacey's Blog about Health and Everything Else

Cynicism and Medicine

2010-04-05T20:12:00.000-07:00

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.

Update and Drama

2010-03-17T00:44:00.000-07:00

My six month follow up with the Oncologist was today. He told me that the tumors they had radiated have not grown however a tumor that had not been on previous MRI's had been reported. He didn't know if it was new or if it had been present when I went through radiation. Basically, it's wait for six months and check it again. My tumors are generally benign and he told me not to worry. I'm not sure how it is considered benign if they keep multiplying? I'm just so frustrated as I was hoping for better news.

Here I am feeling sorry for myself and I hear a sound like a window breaking. It's twelve midnight so I go to the window and my next door neighbors house is fully engulfed in flames. They got out okay but it doesn't look like their animals did. I think they've had a worse day than I have!

Update

2010-02-08T09:40:00.000-08:00

I had two follow up appointments last week. One with the ENT Surgeon and the other with my Endocrinologist. It's been four months since my surgery and I am happy to report my voice still sounds great. The doc took a look and told me he does not need to see me for another 6 months. The Endo was as usual not much help. He is very nice but what I have is not his area of expertise. Last year a month after my Thyroid surgery I had what I call a horrible episode. jerking movements in my neck, panic like symptoms, Racing heart, insomnia for weeks, buzzing feelings and feeling like someone flipped a switch and I was on like an electrical appliance and high blood pressure. This has happened sporadically from time to time and I went to see my primary doctor. He ran a test and my thyroid indicators were dangerously low. Actually he said I should have been in a coma as he had had patients with higher levels that were in a coma. Scared me a little so I made an appointment with the Endo and he was really irritated that I had gone to my PCP about this. He said it couldn't be my thyroid but didn't give me any indication on what it could be. He grudgingly ordered the Urine test but it came out just slightly elevated. The last month or so some of my episodic symptoms have come back, this time with really low blood pressure alternating with hbp and pain and tingles in my neck radiating down my spine so I decided to do an "experiment" by myself. I knew my thyroid levels were stable so I stopped taking the medicine for a week, the only symptoms I experienced was shakiness and some blood pressure spikes but no low blood pressure so I think I can rule out the thyroid as being the cause but I would really like to know what is causing it. I brought up the new/sporadic symptoms and the fact the pcp thinks I need an MRI of the spine and the Endo told me it wasn't his area of expertise....... Agh...............I'm not sure how to move doctors? I've been also seeing Dr. Yu for genetic counseling who is a pheo/para expert but the drive to Cedar's is just awful and I wish I could find someone at UCLA that could help. They do have their own resident expert but as my current doctor works in the same department I'm not sure how I would do this without any hurt feelings. Anyone have any ideas?

Realization of New Year's Resolutions

2010-01-21T11:54:00.000-08:00

I wrote last week that my number 1 2010 New Year's resolution is for 2010 to be a better year. I'm happy to report that this is already working out for me!!!! My boss pulled me into her office yesterday and informed me I had been approved for a promotion! Woo Hoo!!!!!!! So for all those of you out there waiting for something good to happen this is proof that good things happen and they can happen to you too! Must go do the happy dance now.....

New Year's Resolution

2010-01-12T21:37:00.000-08:00

Yes I'm late in making my New Year's resolution but hey I've been busy so this is the best I can do.

1. 2010 has to be a better year than 2009!
2. Now that I can actually speak (and be heard) I am determined to go on dates and have fun.
3. I will enroll in CSUN this spring - Going for my MBA
4. I will get my SPHR certification
5. I will update this blog at least once per month and keep up with my facebook friends.

I know I've been missing in action for a long time. I've been feeling better and just wanted a break from the whole health issue so with that said....I'm back! Just a little update, I can speak! Woo Hoo! I can't even express how happy that makes me. Ironic huh? I've got follow up visits with the Surgeon and Endocrinologist in February and with the Oncologists in March. Here's hoping 2010 is a far better year than 2009.

Body Image

2009-11-02T11:38:00.000-08:00

***This is a diary I posted on DailyKos and thought I'd share with you since it does fold into the health perspective.***

I was in our office breakroom heating up my lunch yesterday when a coworker came up to me and asked me how much weight I've lost and wanted to know what kind of diet I'm on. I've lost about forty pounds in the last two months because of illness so instead of sharing the horrible details that I'm sure is more than she bargained for I've been putting off this rather persistent colleague with vague answers. Yesterday she was like a dog with a bone though and wouldn't let it go. Atkins, Weight Watchers, Low Carb and on and on..... I finally had enough and blurted out that I'm on the radiation starvation diet. You would think that would have stopped her right? Guess again....she said (I kid you not) "Well it looks like it's working for you"!!! WTF??

Seriously, I know we have a culture that equates "thin" with attractive however there is just something wrong with the idea of being thin at any price. Which brings me to why we should care.

The truth is that most American women come in all different shapes and sizes and do not conform to what the ideal is that we see in the media daily. This disconnect with reality has a negative impact on girls who are subliminally told over and over again what is attractive and what is not and find themselves lacking.

Thin may be attractive in our society but it does not equal healthy. Take for an example this picture of a Ralph Lauren model....

She's attractive right? This picture is not real though, Ralph Lauren airbrushed this picture of her so that her head appears larger than her pelvis! Not biologically possible, not healthy and not a realistic example of beauty. This model who in reality is 5 feet 10 inches tall and weighs 120 pounds was fired for being "unable to fulfill the terms of her contract" code for being too fat to fit in to the size 0 samples.

I've attached the Weight Watcher's healthy weight range chart below and if you fall within the ranges you are doing good.

Weight Watchers Weight Ranges For Adults (in pounds)Height Ft/In Min Max 4'8" 56" 89 112 4'9" 57" 92 116 4'10" 58" 96 120 4'11" 59" 99 124 5'0" 60" 102 128 5'1" 61" 106 132 5'2" 62" 109 137 5'3" 63" 113 141 5'4" 64" 117 146 5'5" 65" 120 150 5'6" 66" 124 155 5'7" 67" 128 160 5'8" 68" 132 164 5'9" 69" 135 169 5'10" 70" 139 174 5'11" 71" 143 179 6'0" 72" 147 184 6'1" 73" 152 189 6'2" 74" 156 195 6'3" 75" 160 200 6'4" 76" 164 205 6'5" 77" 169 211 6'6" 78" 173 216 6'7" 79" 178 222

Healthy is what should matter, not whether you fit someone else's idea of what attractive is.

Woo Hoo!!!!

2009-10-27T11:54:00.000-07:00

I've finally done all my follow up appointments and it's good news all around. I saw my radiation oncologist and he said everything looks fine but I will have to have new MRI's done every 6 months to monitor the paragangliomas. I don't have to see him again for another 6 months. My Endocrinologist told me that I will not need the Radioactive Iodine treatment and I just have to see him every 3 months for follow ups. The Neuroendocrinologist said my abdominal MRI came back clear and best of all my ENT surgeon said everything looks good so he scheduled me for my vocal chord surgery..............this Friday! I can't even begin to tell you how excited I am. Of course those of you who know me knows that this is how this whole journey started out! I went to the doctor to fix my paralyzed vocal chord and of course he found the Thyroid cancer and Paraganglioma and those had to be dealt with before they would touch the vocal chords. I'm off to do the happy dance!

Doggie Madness!

2009-10-19T13:56:00.000-07:00

I have a very bad dog. Well actually the problem is that he is a really clever bad dog. Poochie is a two year old beagle and he is as energetic and mischievous as when he was a puppy. I swear this dog has a sixth sense if there is a door open or a gate ajar, he just knows and makes a break for it. He also tests the gates to see if he can push them open or squirm under them. This weekend he "escaped" four times! He likes to roam the neighborhood looking for dogs to play with. A neighbor one street over brought him back twice. They have a dog too and apparently Poochie likes to sneak in their backyard and play. Then yesterday afternoon I received a voicemail from a lady that said she had just found him and that he was the cutest little beagle she had ever seen. I called her right back but she didn't pick up. Krysta (who had left the gate open) was given the task of calling her back every five minutes till she picked up. Apparently since we didn't pick up when she first called she thought that meant she got a free dog and didn't want to bring him back. She had even gone to Pet Smart for supplies. This all happened within the space of half an hour. Eventually, she was "convinced" that she should bring him back. So he came back the same way he always does with his ears drooping and his tail between his legs like he's a six year old who has been made to stand in the corner. Then by happenstance I opened the front door and our neighbors huge bulldog came walking in the door. I chased him around the living room and finally shooed him out the door and as I was trying to close the door behind him Poochie made a dash for it. Again. So there I was chasing this incorrigible mut down. Again. Our neighbors must thing we are crazy and maybe they are right................

Lighter fare

2009-09-29T12:00:00.000-07:00

I found this picture earlier today with President Obama playing with his niece and thought it was too cute not to pass along.

I heard on the news today that some idiot put a poll on their Facebook account asking whether President Obama should be assasinated or not. I spoke with the site administrator this morning who acknowledged he had been contacted by the Secret Service and while he would not tell me what they discussed he did tell me he has access to the posters personal information. The thing that bothers me here is the total lack of respect. For the record, I hated most of President Bush's policies and I was rather vocal about that however I never wanted him dead. When that Iraqi threw his shoe at him I thought that you just can't get away with that type of behavior. Not because of the man but because regardless of my personal opinion he was still President of the United States. The same thing applies to heckling the President in the middle of a speech.

Here's few more pictures and I ask you, how could you want to hurt this?

Feeling better

2009-09-29T10:57:00.000-07:00

I have to say that each day that goes by I seem to be getting my energy back and since radiation is over I've really gotten a break from all the doctors. I will be having an MRI done this Friday to see if I have anymore tumors in my pelvis and abdomen region. From every thing I've read, this would be a more common site for them to develop than the neck which is where mine was discovered. I also have several follow up visits next week. The one month visit to the oncologist. I expect this one to be kind of rough because I've lost so much weight. I'm not sure what to do as I'm doing my best but still can't seem to force myself to eat what doesn't taste or smell good. The other two are follow ups with my endocrinologist and ENT specialist. The one I'm really nervous about is the ENT. He's the one that told me I'd have to wait to see after the radiation whether they could do the surgery to improve my voice. Dr. Gerald Berke at UCLA is my doctor and he is the top ranked specialist in the nation on voice disorders so if he says he can't help then I don't know what I'm going to do! I know this seems a little melodramatic but if you could hear me you would understand. I'm just going to HOPE that a collagen injection is still possible. As for the endocrinologist, the last time I visited him he indicated there was something wrong with my calcium levels and that they might have to "move me up" whatever that means. Hypercalcemia is a tumor marker or a sign there are problems with parathyroid glands. I'm wondering if it could be caused by the radiation treatment injuring the parathyroids. This is enough health problems for now, as always thanks for taking the time to read.

2 1/2 Weeks Post Radiation

2009-09-21T09:40:00.000-07:00

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!

Monday Ramblings

2009-09-14T16:38:00.000-07:00

I'm taking a day off from my usual health diary to talk about an interesting debate I had with a co-worker on the state of public education. In California each School District is funded based on the property values of the neighborhood. This means that in wealthy areas students get the best books and facilities and teachers. It also means there are poor schools where students are sharing books that are twenty years old in classrooms that are falling apart. I suggested that instead of basing school funding off the property values of each neighborhood that funding should be equitable statewide and based on the number of students each school has. That way there would be no inherent discrimination. My co-worker told me that is "socialism" and she did not feel she should have to pay to make sure all kids are given the same opportunities at an education. Her attitudes was kind of like "Why should we have to pay for them?" This from someone who has no children and already pays for the rich kids in Westlake Village! I guess my frustration with this is that there seems to be an attitude that poor people are responsible for their own circumstances so they deserve what they have. When we are talking about education though it seems most people would realize that children have no control over where they live rich or poor so why should there be a disparity in the education they receive. It's not like I'm suggesting we raise taxes, just make sure that the taxes that are collected are spread around more equally. So this is where I ask for your opinion. Is the current system fair? (Yes I know life is not fair) Is my suggestion socialism? Is my co-worker right? What's your opinion?

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

2009-09-12T22:16:00.000-07:00

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

2009-09-10T12:39:00.000-07:00

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.

2009-09-05T19:52:00.000-07:00

I found this editorial on the liberal blog Daily Kos and thought it was slightly ironic that the proverbial nice guy and face man of PBS news Bill Moyers is asking President Obama to go to the mattresses on Health Care reform. It's good to know that someone is still running a real news broadcast.

BILL MOYERS: The editors of THE ECONOMIST magazine say America's health care debate has become a touch delirious, with people accusing each other of being evil-mongers, dealers in death, and un-American.
Well, that's charitable. I would say it's more deranged than delirious, and definitely not un-American.

Those crackpots on the right praying for Obama to die and be sent to hell — they're the warp and woof of home-grown nuttiness. So is the creature from the Second Amendment who showed up at the President's rally armed to the teeth. He's certainly one of us. Red, white, and blue kooks are as American as apple pie and conspiracy theories.
Bill Maher asked me on his show last week if America is still a great nation. I should have said it's the greatest show on earth. Forget what you learned in civics about the Founding Fathers — we're the children of Barnum and Bailey, our founding con men. Their freak show was the forerunner of today's talk radio. Speaking of which: we've posted on our website an essay by the media scholar Henry Giroux. He describes the growing domination of hate radio as one of the crucial elements in a "culture of cruelty" increasingly marked by overt racism, hostility and disdain for others, coupled with a simmering threat of mob violence toward any political figure who believes health care reform is the most vital of safety nets, especially now that the central issue of life and politics is no longer about working to get ahead, but struggling simply to survive.

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

2009-09-02T19:05:00.000-07:00

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

2009-08-31T22:06:00.000-07:00

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

2009-08-29T21:21:00.000-07:00

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!

2009-08-28T12:06:00.000-07:00

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

2009-08-25T09:07:00.000-07:00

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!

1 More Week Down!

2009-08-21T09:36:00.000-07:00

There's not much to say today other than 1 more week down! Woo Hoo!!!! I've lost a renter that just moved in on the 1st and so this weekend I'm going to spend my time making sure the house is ready to show to more renters. Krysta's father scheduled her a dental appointment at 9am on Saturday and of course can't take her. Doesn't he know this is my day to sleep in? Argh!!! I'm in a good mood because school starts next week!!! I feel like one of those parents on the Office Depot commercial doing the happy dance!

TTFN!

Excellent Article on Slate

2009-08-20T11:17:00.000-07:00

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.........

2009-08-20T10:51:00.000-07:00

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..............

2009-08-17T20:59:00.000-07:00

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!

2009-08-14T17:45:00.000-07:00

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!

2009-08-13T21:25:00.000-07:00

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...........

2009-08-12T20:06:00.000-07:00

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

2009-08-11T22:38:00.000-07:00

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..................

2009-08-11T20:48:00.000-07:00

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............

2009-08-10T21:29:00.000-07:00

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..................

2009-08-09T22:49:00.000-07:00

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