Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

Monday, April 5, 2010

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.

Tuesday, January 12, 2010

New Year's Resolution

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.

Monday, November 2, 2009

Body Image

***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....

Skinny 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.

Tuesday, September 29, 2009

Feeling better

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.

Monday, September 21, 2009

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!

Saturday, September 12, 2009

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!

Thursday, September 10, 2009

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.

Wednesday, September 2, 2009

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.

Monday, August 31, 2009

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

Friday, August 28, 2009

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...........

Tuesday, August 25, 2009

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!

Thursday, August 20, 2009

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.

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!

Friday, August 14, 2009

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.

Thursday, August 13, 2009

Almost halfway there!

I'm almost at the halfway point in my radiation treatments. I can't tell you how happy I will be not to have to drive to Westwood everyday! Unfortunately I've started losing my saliva which with the taste buds being gone really really sucks. I had no idea what saliva actually does before I started treatment. It helps break down food as you swallow. So now whenever I eat not only is the food unappetizing but it's also hard to swallow. I guess no more bread for me for awhile. I'll have to get used to a liquid diet. This is crazy to ask because it looks like no one reads this but does anyone have any really good smoothie recipes?



Monday, August 10, 2009

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

I had a total thyroidectomy done on May 12th and that laid me up for two weeks. Generally speaking the worse part of the whole thing was the two days I had to spend in recovery. I was hooked up to machines and they had things attached to my legs as well. Talk about uncomfortable. I'm the type of person that just can't sit and do nothing and laying prone for two days was a challenge.

After the surgery I was referred out to an Endocrinologist and an Oncologist. I still needed to have radiation for the paragangliomas and I'll have to have what is called Radio Active Iodine to kill any remainder thyroid cells. What they do is you go to a hospital and have to take a radioactive pill that literally makes you radioactive for 10 days. I've been told I can't have contact with anyone for that time and will literally have to live in my bedroom and have food delivered to my door. This has been put off until after the regular radiation is completed.

I went to my consultation with the Oncologist and was told that Dr. Berke was right we would have to go ahead with the radiation. I was told I would be called to schedule an appointment to make my mask. It took about three weeks to get the preauthorization for the radiation from Blue Cross and finally I was called into for what they call the "simulation". Whenever they do radiation to the head and neck region they create a mask by making a mold of your face. They put this mask on you during treatment to ensure you are unable to move. Trust me this is something you do not want to experience if you don't have to. I'm not generally phobic and small enclosed spaces don't freak me out but I can't say the same about being held down in this mask during treatment. I go in and make the mask and have another MRI of the Neck/Chest area done. The MRI took 2 hours this time. I was then told they had to work up my treatment plan and would call me to when it was completed. This was another 3 week wait and I was told the length of time was due to complexity of my treatment.

I started radiation on 7/26/09 and the first day I got there they strapped me in for the procedure. All in all it was completely painless. It took about a full hour to get everything set up and for the actual treatment. I had read on the cancer compass website that side effects from radiation are cumulative and aren't normally felt until several weeks in. After the radiation I went back to the dressing room to change. I bent over to pick up my shirt and got what I can only describe as a ball of heat in the middle of my chest that dissipated. I kept getting these "surges" that night and after they were finished I had a soreness in my chest. Kind of like that feeling when you have a chest cold and have coughed too much. Whew.......what the heck was that?

That's it for tonight.....I'll continue the story tomorrow.