My adventures with Synovial Sarcoma

2012 Goals --- going back to school and a story

2012-01-20T10:31:00.000-08:00

So far one of the goals for 2012 has been met.

The Spring Semester at UNLV (University Nevada Las Vegas) started on Tuesday, Jan 17th. So, of course I was there (without the bells) for my first college course in nearly 6 years ... Introduction to Epidemiology. Then on Wednesday my second class started Public Policy and Health Care. Does anyone notice a theme here? I suppose since 'acquiring' Cancer a year ago, I have developed a greater interest in the nature of health care in the US. After all, last year was easier on us (financially) than it would (could) be for others because we have awesome Health Insurance. I was able to get really good care (aside from the 'usual' glitches), in both in-patient and out-patient environments. Regular testing and not having to take alot out of pocket or worrying about if we were going to have to pick and choose what the priority was ... then again, that may make us the unusual not the norm.

In Jan 2010, I had my first arm surgery for some nerve damage received several years before (falling off a bike of all things), and my mother said, "it's a good thing you have insurance, what would you do if you didn't have insurance?" I told her, "still have the work done." The condition had gotten to where I had lost functionality in my right hand (clawing and wasting, classic signs of peripheral nerve damage), so it was something that had to be done. She then asked, "How would you pay for it?" I told her then, "Everything is negotiable." Which is the case. If I had been uninsured at the time of the first surgery, I would have gone to the surgeon and asked what it would cost for the procedure if I was paying 'cash.' I imagine, it would have been about 50% less that the insurance would be billed. The insurance companies negotiate rates with their providers, the providers charge a rate (which may vary from person/person or insurer/insurer) and then there's cash/personal guarantee of payment.

So, how does this apply to my adventure last year with synovial sarcoma?
The medical system is insanely convoluted, so I want to learn more about what makes it tick.
The much touted 'death panels' already exist if you don't have good health insurance or the money to pay for the procedures (which is why so many people wind up in bankruptcy from medical expenses)
I was terribly fortunate with the medical insurance provided by my husbands employer (group insurance rules)
The anticipated changes in the health care laws, what are the pros/cons and how much of a difference will they make to the public health arena and the people who need the care.

to be continued ...

Good tidings for all and the strangest reasons to be happy

2012-01-13T11:51:00.000-08:00

When I look back on 2011, there are a number of things that sound trivial, but, really become important in the broader scope.

I was diagnosed with cancer exactly 1 year ago (alright, I was told it was cancer on Jan 14, 2011), since then life has been a little upside down, sideways and inside out.

The things I decided not to take for granted:
My husband. He absolutely hates hospitals but he came to visit me every day of my confinement (14 days over 1.5 months), and was there the whole time for my surgery. He also chose to sleep on the couch for awhile to make sure I got what he calls "good sleep"
My family. They were all insanely supportive and helpful of anything Dave or I would need. My mother for staying to take care of me (and not giving us food poisoning). Dave's Mom for driving me around to appointments and not spilling the beans to my mother.
My/Our Friends. Lots of kind thoughts and no one made me feel funny when I was bald.
A good doctor. Everyone needs a good one to help you through the maze that is the medical system.
Nurses

The strangest reason to be happy ... The aches and pains I have in my right hand. Why? I had been told for months that I could lose the arm, depending on the ease/difficulty on removing the tumor and if it were to spread. So, to have the aches and pains, isn't such a bad thing.

The first week of January ... in review

2012-01-09T14:47:00.000-08:00

It's official, 2012 is here, the sky is blue and the weather is remarkably tolerable.

My hand has it's moments of pain and suffering and remarkable elation. So, so far I have nothing particularly pithy or earth-shattering to mention ... but, it's probably because I've forgotten what it is I wanted to say.

sigh

2011 A Retrospective

2012-01-01T14:29:00.000-08:00

December 30, 2010 was the day I went in for a surgical procedure to determine the exact nature of the tumor in my forearm.

Is it going to be a schwannoma or a neurofibroma? One is malignant and cancerous, the other benign and no big deal ... sounds like the definition of benign and malignant doesn't it.

http://en.wikipedia.org/wiki/Malignant_peripheral_nerve_sheath_tumor (sorry you have to copy and paste the link into your browser window).

In any case, my grandmother used to say whatever you're doing in New Years Day is what you'll be doing for the rest of the year. Last year on New Years Day, I was sick and recovering from the surgical procedure I had on the 30th. Hmmm ... maybe there was some merit to what she used to say.

My goal for 2012 is to not spend time in the hospital. 2011 had two weeks too many in the hospital (and probably too many CT scans, MRI's, PET Scans, forearm x-rays, needle sticks, the list goes on).

Happy 2012 to all.

Happy Dance Happy Dance

2011-12-22T15:16:00.000-08:00

In the last few weeks I've had a CT Scan, and and MRI and all the results are in ...

... Nothing. Nada. Zip. Zilch.

An awesome Christmas gift.

Former Miss Venezuela dies from Breast Cancer

2011-12-20T11:58:00.000-08:00

Seeing information about people passing away at such a young age from cancer makes me sad.

No, it not is from increased empathy from my own experience with cancer ... or is it?

Some days you just have to say "What the F***!!!"

2011-12-16T10:09:00.000-08:00

Wednesday (12/14) was absolutely one of those days.

It all started off so easily, alarm goes off, hit the snooze (repeat for 30 minutes)
Get dressed in gym clothes for the MRI (the gowns they provide for you are yucky)
Drive to the Imaging Center
(me) Walk in at 10am
(them) They ask if you have an appointment
(me) I say, Yes, I do at 10am
(them) They say, No you don't, we have one for you on the 22nd at 10am
(me) Insert jaw drop
(me) No, I have one on the 27th and today
(them) I see a note that a message was left for you yesterday, about having to reschedule your appointment since we didn't have an insurance company authorization on file ...
(me) insert clenched jaw
(me) I didn't get a message yesterday
(them) it was left on your home number ...
(me) we've been trying to get this scheduled for 6 weeks and I have a letter at home from the insurance company authorizing this procedure ...
(them) ... well, we don't have one shown for this procedure, I suggest you call your Dr's office
(me) stomp, sigh, call Surgeon's office, get the office manager, get the authorization number go back to the registration counter ...
(me) here is the authorization number
(them) counter person picks up phone, dials and asks ... "we have a patient here with an authorization number whose appointment was cancelled and if we can get the file updated, can we get her in today?" (poorly paraphrased) "Oh, yeah, that's what I thought, you're booked solid today ..."
(me) so, if I've been rescheduled to the 22nd, is there anything sooner?
(them) let me call, she dials, get's the appointment people and there's nothing available before the 22nd ... "well, if you'd like you can wait and try to do a drop in for someone who doesn't show up. It may be a couple of hours ..."
(me) at some point during this exchange, we've changed the contact information on file to my mobile phone, I've also texted my husband "I am going to f*****g.kill.someone"
(me) I leave the facility and go out to the car, call my husband (in tears), he says he'll be right over and hangs up. I call him back that I'm going to go to Starbucks and try to calm down. I start the car and decide to go to my Surgeons office.
At the Surgeon's office, I ask the receptionist if I can come around the counter, to talk to the office manager. She sees my puffy, bloated, tear stained face and asks what happened. I tell her about the cancellation (which I wasn't properly notified about), how they didn't have authorization and they cannot reschedule me anytime sooner than the 22nd. She says, "I'll call our contact"
(Drs office) She calls the contact at the imaging center and tells them what happened and I can be scheduled for the MRI as soon as I can arrive at another facility about 20 minutes away.
(me) Let's do it (looking at the map), I know where that is.
(Drs office) Come to the back office. She calls the imaging center contact and says I'll be there in what is drive time. Dr. comes in and gives me a hug and says he's going to give them a call as well. He had seen me sitting by the receptionist and asked what was going on.
(me) I am so appreciative of the phone calls the office manager made and thank her and thank her and thank her. Leave the office (about 1110am)
Dave wants to go to the imaging center and give them heck ...
We go to the imaging center and talk to the same person I spoke with earlier ...
(them) Yes, we have changed the contact information. I offered her the opportunity of staying and waiting and she declined ... blah blah blah
(Dave) leaving a message on the home phone in the middle of the day is not effective, she's not 60 years old and sitting home to receive the message. ... blah blah blah (there were people sitting within earshot and their facial expressions changed when Dave said "not 60 years old ..."
We leave, I head across town (about 1120am)
I get to the other imaging facility (about 1140)
MRI done (about 1245), and they were very apologetic about what had happened earlier.

So, during the course of trying to get this appointment scheduled, I had to reschedule a Drs appointment 3 times because the imaging facility mis-laid the paperwork, and I had to call the Dr's scheduler to find ask her to call them about the MRI Orders. I also had to reschedule my plans for the day.

Bunch of boneheads.

But, my Surgeon's office is awesome.

Where has the time gone ....

2011-12-13T17:08:00.000-08:00

Yikes, I have no idea where the time has gone since I last posted.

So, we're rapidly approaching the end of 2011 and (like everyone else), I've been feeling a little nostalgic.

Things I'm grateful for:

Family - 2011 would have been a challenge without the love and support of my family. My husband who shaved his head for me, my mother for baby-sitting, driving and cooking (yes, and we didn't come down with food poisoning), my mother-in-law for driving me to appointments, Flowers that arrived at the house (Jaime and Jason), Flowers that arrived in my hospital room (Mike and Judy), a Nintendo DS to allay the hospital boredom (Greg and Nina) ... oh, heck, I don't think there's really enough room for the full list. It feels a little like the Oscars (or some other award show) where the winner cannot remember everyone to thank, my apologies if I left you off the list. btw - Charlie Sheen, this is really being a "Winner"

Friends - 2011 would have been less interesting without the love, laughter and support of very good friends. Caroline, Danielle, Laura, Lori, Alice, Susan, Fred ...

My Arm Surgeon - in spite of doing the "raise the roof" and saying "pretty fly for a white guy" he did a really good job of helping me negotiate (and understand) some of the processes related to my cancer diagnosis.

Modern Medicine - the ability to get through 2 in-patient rounds of chemotherapy, 5 weeks of out-patient chemotherapy, 28 days of radiation therapy (managed well enough so I didn't get extremely sick) ... all made my tumor get smaller and easier to excise.

10 Fingers - I got to keep my right hand. It was scary for a while when the oncologists kept saying "Amputation." The right fingers and wrist may hurt (darn sharp stabbing pains), but, I still have them to hurt.

Knit Hats - The two hats that were made for me by Alice and Susan while I was in Chemo. When you're bald temperature regulation becomes more challenging. These hats were an awesome surprise.

2012 To-Do List:
Higher Education - take a class or two at UNLV.

Jump starting (restarting?) a business - I'm bored sitting behind a desk all day long. I want to get back into the business of training and teaching again. It's way too much fun.

I'm sure more will come to me in the days ahead, so keep watching.

Merry Christmas.

Steve Jobs passed away ...

2011-10-06T16:58:00.000-07:00

It's a strange world we live in where we remember people for their lack of accomplishments (aside from being on "Reality TV"). Steve Jobs passed away yesterday and whether or not you like Apple products, there are so many products on the retail market that exist because of Apple. The news of his passing saddened me because of the loss of such a dynamic personality who strove to "Think Different," for perfection and the protection of his family from his own professional spotlight.

I guess this also ties into what I posted last week about trying to re-find my place in the world. Mr. Jobs is quoted in his commencement address at Stanford University in 2005, "If today were the last day of my life, would I want to do what I am about to do today?" After having been diagnosed with a rare form of Cancer, those words take on a whole new meaning.

I was diagnosed with intraneural synovial sarcoma (If I'm being repetitive, I'm sorry). A sarcoma diagnosis accounts for less than 1% of all new cancer patients in a year and with the varieties of sarcoma (like 20 or so), it makes the diagnosis 1/20th of 1% of new patients (not to detract from the rareness of Mr. Jobs prostate cancer). Like Mr. Jobs, there is not alot of research in the treatment of these types of cancers, simply because the occurrences are far less than those of colon, lung, or breast cancers.

The last few days have been spent trying to decide what I would like to do if today were the last day of my life ... on the bucket list would be ... going back to what I got my degree in, Kinesiology or maybe studying the etiology of diseases, indulging in my inner sadist (a client expression, not mine) and doing group exercise classes and personal training.

Sitting behind a desk and answering a phone is not on the list.

it's only an intermission

2011-09-28T10:37:00.000-07:00

I have to remind myself that a cancer diagnosis is merely an intermission on the to-do list. How long you choose is up to you and your doctors.

In a week or so, it will be two calendar months since my last surgery and almost 4 months since finishing chemotherapy and radiation treatments. Oh and 9 monhs since I taught my last class ... breaks over. I want to get back to what I like best, not what people tell me should be best.

This weeks goal, redefine/redetermine what makes Kelly tick and go for it!

As a side note, going back to an office job has allowed more freedom in the lives of my husband and myself, but, it doesn't feed my soul. From here it's about finding a balance. Maybe for me (right now) it is taking classes, not teaching, cutting back my hours behind the desk, and just feeling better about my place in the world.

46 and Counting

2011-09-21T14:18:00.000-07:00

Yesterday was my 46th Birthday.

Happy Birthday to Me!
Happy Birthday to Me!
Happy Birthday to Meeeeee!
Happy Birthday to Me!

6 months ago, I was in between my first and second round of chemotherapy.
3 months ago, I had finished all my chemotherapy and radiation treatments.
1 month ago, the sutures had been removed from the surgery which removed the remains of the cancerous tumor.
Yesterday, we had nachos and a birthday cake pop.

Life being ordinary is pretty darn good.

Heels are a good thing ...

2011-09-12T09:43:00.000-07:00

... Last week ended on a high note. High heels. I had told my Doctors during treatment that if it was a bad day, I was going to find a really high pair of heels to put on, then you have to concentrate on walking (landing on one's tush in heels, is just not an option).

About half-way through, Friday became a high-heels day. I had gone to an appointment (for a follow-up) and it was just stressful. I would just like to come away from an appointment without a request for more testing.

By the end of the afternoon, I was sitting with my latte and taking a few minutes to relax.

To cry or not to cry

2011-09-08T23:01:00.000-07:00

Today I went and got a pedicure (the first since December 2010), and they knew I'd been sick. Apparently, one of their customers (who is a lady who would attend my Group Exercise classes), told them about my diagnosis. Hugs all around, questions, are you alright? You look good ...

But, I was asked something no one else has.

The question was "Did I cry alot?" No, in the very beginning I had a few minutes of "why me??? I've been doing everything 'right.' I don't smoke, I exercise ... " you get the picture.

So, yes, it did make me cry, but, only for a few minutes. Crying about it doesn't help, mindset does. I decided after taking my "why me" minutes to remind myself that there are people worse off than myself and if they can do it. So can I and it's going to be cake.

Guess what? It has been cake (alright, a few aches and pains, but, nothing compared to what other people have to go through).

My friend Sharons daughter Fiona, spent 4 years fighting her stage 4 diagnosis. She passed in April/May. Fiona is still my hero. Fiona apparently would ask about me and ask about how my husband was handling my diagnosis. He handled my diagnosis like anything else, research on what a synovial sarcoma is, research on treatments, asking questions and finally, shaving his head.

Shaving his head made me cry.

Happy September

2011-09-07T22:36:00.000-07:00

It's been a calendar month since my surgery and the arm seems to be healing well (except for what's appearing to be a touch of an infection, we knew this could happen). The bonus points are for my body didn't like a particular type of suture? Apparently it appeared as a black spot along the incision line and my Doctor removed it. I didn't.

On my last visit to the oncologist he wrote the order to have my port removed (that puppy was uncomfortable). So it was removed 1 week ago.

That's it for now. Feeling ucky, that's what happens when you take vicodin on an empty stomach (recycling!!!)

About my second hospital stay ...

2011-08-23T11:45:00.000-07:00

One of my Doctors wasn't very good about giving me the details about what my treatments were going to be.

Before my first round of Chemotherapy he said it would be like 4-5 days in the hospital. Turned out to be 8 with a 24 hour infusion of drugs for 7 of the 8 days.

The second visit, I was better prepared. Heck the hospital even called the night before and told me where and when to show up. Having the advance notice helped me to pack, but, it didn't help to forestall the boredom. I was bored within hours of starting this round.

This time, I had a compatriot in long hospital stays. It was a gentleman named Gordie, who was staying just down the hall for several weeks. One day I had the opportunity to ask him how he coped for such long stays when just a few days drove me stir-crazy? He said the secret is to make the hospital room as "home like" as possible, have a coffee maker, serve donuts, be able to walk around like a normal person (i.e. no IV post), and keep your wits about you. Gordie had a very very very very low white blood cell count as a side effect of Leukemia and even though he had run of the building, he couldn't go home. So, he'd have visitors and non-hospital food brought in. At least once someone brought his dog over for a visit in the grassy knoll near the parking lot. When he told me about how his dog had been dressed in scrubs and a mask ... it's a great image.

We'd visit for a few minutes each day and he made a darn good cup of coffee.

I wonder how he's been.

Well, now that that's all said and done ...

2011-08-19T11:19:00.000-07:00

It's now been two weeks since my latest surgery which removed the tumor, and ulnar nerve from my right forearm. The sutures have been removed and I've been given the ok to do fun things (like go swimming).

Darn it, I'm tired. I was talking to Dave the other day about how I'm just tired. It's because we've been running with this for so long and now that we're done, the adrenaline rush is gone and the exhaustion has kicked in. I can cope.

Follow-up care is regular MRI's and CT Scans for the next couple of years. It appears that we're going to be keeping with my arm surgeon for the follow-ups. It's a good thing I like my arm surgeon.

At last ...

2011-08-02T17:25:00.000-07:00

So tomorrow is the big day. Yes, THE day. Met with my Dr. in town, told me what was going to be done, options for tomorrow and yikes.

The in's and out's of trying to schedule appointments

2011-07-27T00:24:00.001-07:00

Egads! What a process.

Call, leave a message, wait for a call-back
Call, leave a message, wait for a call-back
Call, leave a message, wait for a call-back
Call, leave a message, wait for a call-back

notice a theme here?

The nature of health care can be pretty and ugly

2011-07-15T21:44:00.000-07:00

The good news ... my shoulder works again. You never really realize how much discomfort tendonitis can cause until you're in the middle of the irritation. Also, my arm surgeon rocks (just don't ask him to "raise the roof" and say "pretty fly for a white guy" at the same time). It took a few days for the steroid shot to kick in, but, when it did, life was good.

A tale of good doc / almost-bad doc (whose names are being excluded to protect the innocent)

The Good Doc - He's had the questionable honor of operating on my right wrist/elbow in Jan 2010 and forearm in Dec 2010. He is the one who performed the procedure that removed part of the tumor which was eventually determined to be cancerous. His office made the arrangements for the CT scan and the referral to the Cancer Center (they called me and said you have an appointment @ with ... show up!). He's also offered to speak with any of the other surgeons/physicians that I have been working with for my treatments. He is flexible enough to make a decision and/or see the wisdom of others peoples expertise or to make the referral to someone else. I have no idea if the surgeon making a referral to another surgeon is the norm, but, it makes me feel better in the quest for the best care possible. My surgeon here spoke with a Dr. (she) at some conference in February about me and the other Dr. had cared for a patient with the same ailment as myself. After he spoke with her, he called me and told me of the conversation and that she is the one who has worked on a similar case, saying it would be prudent to consult with her prior to starting treatment locally. I didn't have to express my distaste with his expertise for him to make this suggestion.

The Almost-Bad Doc - On the other hand (in my case, the left one) my chemical oncologist was disappointing at our first meeting. He had no familiarity with my case and didn't seem to have read my file prior to meeting with us. Dave and I described it as "phoning it in," and my mother loved it. The initial experience with this Dr's office less than pleasant. There was a lack of communication (canceling an appointment without telling me), not being sure of which test to schedule (after talking with my radiological oncologist), and what seemed to be a general lack of specific initiative. At one of my appointments, Dave gave this Dr. an earful about the lack of communication. I think this was the appointment when we were offered the opportunity to have my case evaluated at the Sarcoma Center at UCLA.

The other good Doc - my radiological oncologist. Upon our first visit, he seemed like he'd read the file, listened to what we had to say, called my arm surgeon and talked about upcoming treatment (I had been scheduled for surgery a few days later, which was cancelled after the two talked). As a bonus, his nurse is awesome. I called her after my appointment had been cancelled by the other Dr. and she straightened things out and wanted me to call her with what's going on.

The Doctor at UCLA - took no prisoners, asked questions, questioned the methodology of my arm surgeon (but, I knew why he chose to act as he did), tried to explain how chemotherapy works to my mother (Dave, Mike and I had all tried at various opportunities), scheduled surgery and I had tests done that day. A few days later he'd reviewed the file and made his recommendations. While adding, it looked good for me to be able to keep the arm (I did a happy dance with that pronouncement, but, I still get scared at the thought of what could happen). My treatment in Las Vegas followed his recommendations.

So, what is the point of these tales of conflicting medical styles? The point is, my medical treatment has been much like a ship with no Captain. Unless you count Dave or I or my "Pretty fly for a white guy" arm surgeon. If Dave or I had no knowledge of my type of cancer and the ability to make decisions, we would be lost in the system and wandering aimlessly.

owie owie owie

2011-07-05T22:28:00.000-07:00

It has been awhile since I last thought of you. It's been busy and painful at the same time. Somehow last week I managed to hurt my right shoulder, my forearm hurts and peels and well ... just a different set of stresses. Maybe this is the prize for making it though Chemo and Radiation fairly easily.

My second trip to the hospital was harder and easier at the same time.
Easier since I knew what to expect.
Harder since I knew what to expect, and the stir-crazy-ape-poop-bored hit sooner.

The good news was since we had a better idea of what to expect, I was able to pack some items in advance (all the toys, books, toiletries, etc). I also knew what the procedures were going to be so I was far more relaxed than the first time which made it easier.

Since we managed to get the procedures started earlier, we managed to get all of my treatments started earlier so I was actually able to get out 10 hours earlier than my first visit.

My very first hospital stay

2011-06-26T19:39:00.000-07:00

I was admitted to the hospital for my first round of chemotherapy on March 2, 2011.

Can I just say, what an introduction to a hospital stay. Prior to this time, I had never spent time in a hospital. So, I had no idea what to expect.

I received a phone call at 630am that day and was told to arrive at the hospital at 700am for check in, so I would be able to start procedures at 730am. I'm half awake when this conversation is going on so I say, ok, I'll be there.

So the day went like this:
Arrive at the hospital with only my purse in hand
Get checked in
- insert hospital food -
Get blood drawn, weighed and blood pressure checked
- call Dave and ask him to bring me a laptop and some clothes -
Get a PICC line (courtesy of a radiology nurse)
Get a chest x-ray
Get another blood test
- insert yummy hospital food -
- call Dave again and ask him to bring me crossword puzzles and a really little toothbrush -
Get a primer bag of saline (1L over 2 hours)
Get anther bag of saline and a primer bag of ifosamide (saline 1L over 10 hours and ifosamide 1L over 4 hours)
- insert yummy hospital food -
Get 24 hour bag of ifosamide (aka ifex)

It was a long day.

Yuck. So what is the treatment plan again?

2011-06-20T16:04:00.000-07:00

When you find out about cancer, there are several questions you find yourself asking.

What is the treatment going to be?
Is it going to hurt?
When will it start?
Am I going to be sick as a dog and bald?

You never wonder, "Will I have to stay in the hospital for a week?"

Of course, I had the "stay in the hospital for a week (or so)" version.

Two rounds of Ifosamide (and Mensa to protect my kidneys) which is delivered via IV for 7 days / 24 hours a day (During that time frame you are treated to an extended stay in the hospital). The regimen is 7 to 8 days in the hospital (depending on the time of day when they hang the chemical bag and how long it takes for the bag to empty - approx 24 hours each), followed by 3 weeks at home recovering from the drugs. Then you do it again.

Round one was from March 2, 2011 to March 9, 2011. Round two was from March 29, 2011 to April 5, 2011. I'll tell you about my hospital stays later.

After the Ifosamide, I received several weeks of Doxorubicin (5 weeks / 4 days a week / 24 hours a day) in conjunction with radiation (28 days = 6 weeks). I started the Doxorubicin on May 2, 2011 and finished on June 10, 2011.

3 to 4 weeks after completing treatment, another MRI

4 to 6 weeks after completing the Doxorubicin and radiation, more surgery to remove the rest of the tumor.

Yes, I did lose my hair and have only been feeling sick since finishing the chemo and radiation.

So exactly how do you tell someone you've been diagnosed with cancer?

2011-06-20T15:32:00.000-07:00

I suppose telling someone about a cancer diagnosis is like ripping off a band-aid. Get it over quickly, let the shock settle in and then everything is all better (pending the questions).

From my own experience, when I said "I have cancer." Peoples faces run the gamut of expressions ... shock, fear, shock, fear, surprise, guilt (in the case of my mother, is it something I did while I was pregnant?). Let's break the reactions down:

Shock - what on earth could you have done?
Fear - what is the prognosis?
Shock - It must be something in the water.
Fear - Is it contagious?
Surprise - You? But, you don't smoke, drink, do drugs, and exercise regularly????
Guilt - Is it my (insert parent of choice you're talking to) fault?

Incidentally, the reactions are much the same when you are the one being told of the cancer diagnosis.

The Good, the Bad and the ridiculous.

2011-06-18T17:32:00.000-07:00

It's been said, when faced with making a difficult decision, you should make a checklist of the pros and cons of each option. As such, I've made a bad news / good news list (some of which has shown up in email)

The bad news ... I've lost my hair and I won't be working on my tan this season. Due to the radiation treatments, I'll have to keep my arm protected from exposure to the sun.

The good news ... we believe the tumor was found early enough so the standard courses of treatment (chemo, radiation, surgery) should be able to make me cancer free and able to torture people for a significant number of years.

The bad news ... I'll have additional surgery in around 10 - 11 weeks (Mid - Late July) to remove the rest of the tumor

The good news ... I've finished two rounds of chemo and have another 4 weeks of chemo and 5 weeks (actually 23 treatments) of radiation and I'll be done with that phase of treatment (my first round of in-patient chemo was March 2 - 9,
2011, second round was March 30 - April 5, 2011). The hospital food was pretty good. UPDATE: I've been done with chemo and radiation since June 10, 2011. Let the dance of joy commence!

The bad news ... Dang! It gets hot under those hats all day long, and we're heading into the warm weather.

The good news ... I apparently have a good head / facial structure for hats (I've also been told I have an attractive skull)

The bad news ... my mother's driving is something dreadful (she's out right now to help me with getting about)

The good news ... I have someone who comes to clean my house every few weeks, besides my mother being here to help

The bad news ... No sushi (or anything else that is not properly cooked)

The good news ... Dave told me to now worry too much about what I'm eating, what's important is to not lose too much weight during treatment

The bad news ... I keep wondering if I'm going to have any nausea or vomiting

The good news ... no nausea or vomiting

The bad news ... I have a pump for my drugs (that I get to take with me everywhere for about 5 days 24 hours per day)

The good news ... for my current round of treatment, it's outpatient and I'm not hospitalized

The bad news ... I don't think I'd make it quickly through the airline screening process (gotta lova a portacath)

The good news ... Technology for drug delivery is pretty darn cool (gotta love a portacath)

The good news ... We are so going on vacation this year

Sometimes you just have to whine about something

2011-06-16T21:36:00.000-07:00

Today was one of those days when the boredom hit like a rock.

The boredom is from the lack of creative expression. I used to regularly ad-lib choreography for my group exercise classes or training clients. Now, not so much. I sit behind a desk and get to be nice to people when the phone rings.

Have I mentioned how much I don't like answering the phone?

In any case, sometimes you just have to whine about something.

Sometimes all you need is a really good haircut

2011-06-15T23:32:00.000-07:00

Cancer = Bald and sick as a dog

Maybe I'm strange but, those are the first things that went through my mind with my diagnosis. Not the side effects of the drugs (aside from bald and sick). Not the amount of time for treatments. Not the logistics of getting treated. Just bald and sick as a dog.

Bald. Four letters that instill fear in the stoutest of hearts. How was I going to feel when my hair started to fall out? Was I going to freak out? So I made a plan. I was going to have my hair cut shorter than usual to get used to having less, and when it started to think about falling out, I was going to have it cut even shorter. I was also thinking about getting an eyebrow template since I have no idea how to draw them in.

The first haircut was expensive. The second significantly cheaper (supercuts cheap). The third free.

The third haircut was at the salon where I usually get my hair done. I walked in and asked the owner to shave my head. He looked at me and asked if it could just be cut really short? I demonstrated why that wasn't feasible (all I had to do was run my fingers through my hair and it was falling out) and he said I'll get the trimmers. As I was sitting there it was remarkably calming, it was one less thing to worry about.

One more thing, there is no way to truly appreciate the stories of people shaving their head in support of someone with cancer. My husband surprised me at dinner with a shaved head. It was amazing.

How not to tell your mother something of relative importance

2011-06-15T10:47:00.000-07:00

Back in December 2010, I told my Mother about my "tumor" and how I was going back for more surgery, her only concern was "As long as it isn't cancer."

Oops.

The surgical procedure went well, some of the tumor was removed (it was described as looking a bit like an over-ripe pear) and sent off for biopsy. Care to guess how often Mom asked if the results of the biopsy were back? Every darn day! Every darn day, she'd ask, "do you have the pathology report?"

Well, I never did have the pathology report, but, I did know what the preliminary test results were. So technically I wasn't lying.

Back to my point today ... How not to tell your mother something of relative importance ...

You should never ask your mother to go to an oncologist appointment when she's walking through a store. Apparently she almost walked into a display when I asked if she'd be interested in going with me. I don't know how long that was after she hung up on me before announcing to the store "It's Cancer."

So a patient walks into their doctors office ...

2011-06-14T20:25:00.000-07:00

... and the doctor very firmly closes the door behind him.

Now like in most stories you know that isn't a good omen. That feeling in your gut that he's going to tell you something ... good? bad? who knows. He's just going to tell you something.

This was Jan 14, 2011.

He had the initial biopsy results from the portion of the tumor he removed on December 30th. The results? The mass looked like synovial sarcoma, but, was going to be sent out for further testing. Ok. No problem. Later the day got a little weirder. I got a call from the Doctors office saying I'd been scheduled for a CT Scan later in the week. Again, Ok. CT Scan, I can handle this. Just more exploratory testing. But, at the same time, this new test is making the cancer diagnosis more tangible.

That night, I talked to Mikey W., and told him about the initial results and swore him to secrecy until I knew more. There really is no point in scaring Mom before we really knew anything tangible. I also told my Brother what was going on and swore him to secrecy as well. So, why did I tell them? I told them on the odd chance that my Mother would hear (Dave told his Mom earlier in the day and I asked her not to say anything, especially to my Mother, but, you know how in-laws talk) about what was going on and nobody being able to explain to her what was going on.

That afternoon, I had the first of a few instances of "woe is me."

What a long strange year it's been

2011-06-14T10:09:00.000-07:00

No, I'm not paraphrasing for the fun of it, and it's technically not quite correct. It's been a long strange 6 months (+/- a few days).

About 6 months ago is when I received my diagnosis of a rare form of cancer, synovial sarcoma. A sarcoma diagnosis accounts for approximately 1% of all new cancers diagnosed annually. Let's add that there are something like 20 types of sarcomas (synovial being one of them) and it ups the rare factor ... now let's add the placement of my particular sarcoma, the ulnar nerve sheath (the nerve that controls your pinky and ring fingers), which makes my sarcoma even rarer. According to my hand surgeon, there have been 12 documented cases. If one were to do the math, it just adds up to rare.

I've been asked by friends of mine if I had intention of blogging about the experience or if I had been writing in general and I think during the course of this adventure, I've been writing about it, mostly for myself, but, I think, now I'm going to share it with the cyberworld. So enjoy and I hope you can find the adventure as interesting (but far less painful) than I have.

Kelly

4th of July 2010

2010-07-03T23:31:00.000-07:00

So, for the 4th of July, remember a couple of things ... tortilla chips over corn on the cob, no mayo based salads and if you're going to choose between hot dogs or hamburgers, I think I' rather go with the burger, at least you know what's in it, the quality of the beef can leaner and you don't get all the chemicals.

yep, that's the ticket.

What else, when faced with a buffet table, the wiser choices would be fruit, veggies (snore), and maybe some type of salad with the dressing on the side. Good/Bad salad choices: spinach, pasta, or something else of that nature, no, not macaroni/potato/carrot raisin (sugar bomb, that I don't even think tastes that good).

Condiments: Mustard is best, sliced tomatoes, pickles, lettuce ... skip the ketchup and mayo (sugar and fat), and you should be good for the day.

But, we are forgetting Dessert, after all, what is more "American" than apple pie? If you've been wise with your other choices, have some. Just think about balance in what you're eating.

Egads it's been awhile

2010-06-17T23:13:00.000-07:00

So, what's new and interesting in the world of health and fitness?

Everything you thought you knew to be true is wrong!
Everything that you know to be wrong is right!

Such is the nature of health and fitness. Everything changes and absolutely nothing stays the same (well, except for the people who want to separate you from your money via very unscrupulous ways).

Let me tell you about today. I think I should wear heels more often and demonstrate dead lifts. I was at a fitness equipment store where a friend of mine works and a customer came in looking at the TRX and we were talking to him about the merits of using the TRX, and other exercises his trainer hadn't suggested to him (dead lifts for hamstrings, chest flys on the TRX, etc). Long story short, he bought the TRX and I think we offered him suggestions on how to make his training sessions more useful (his trainer works at one of the local gyms in town).

What else hit the news today ...

good news: http://www.npr.org/templates/story/story.php?storyId=127895652
This is the type of stuff that makes you want to be a trainer.

the bad news:

Welcome

2009-11-09T00:11:00.000-08:00

The media is filled with news on how to eat, exercise and live a healthy lifestyle. Depending on who you ask, it's either all true or all false, there is really no such thing as bits and pieces can apply. It's like how some people have a problem with just having a little bit of something.

This is a place for discussion on what's happening in lifestyle and health as well as my own opinions on what is happening in my industry and how people are being affected.

Join me for what is sure to be an adventure.

Food!

2009-06-11T12:37:00.000-07:00

Food, something I love dearly. But, how does one moderate their behaviors as the weather gets warmer?

First thing - drink more, you may not realize you're thirsty. Once you feel thirsty, you're already dehydrated. Drink more than you think you should and you'll be fine. The key is to avoid thirst in the first place.

If you don't like drinking water, enjoy whole fruit. You'll get water in additional to essential vitamins without the extra calories (sugar) from juices. Oh and be sure to get your vegetables. The summer is rife with fabulous produce, it tastes great and it's great for you.

Grilling. I love grilled food. The smoky flavor from the grill, fresh herbs and a touch of olive oil make for a fabulous low(er) fat meal. That's the good news. The bad news is when you're grilling, you don't want to blacken your food, to clarify a light char (those grill lines are part of the appeal of grilling) is fine, but, you don't want to be eating blacked food from the grill. That black, charcoaly stuff can be hazardous to your health in the future. By the way, grilling is an excellent way to get the husband to cook, all he has to do is apply heat and there is no recipe for him to complain he can't follow.

Salads are boring (to many), so, we're skipping that thought altogether.

Compassion or a lack of

2009-06-11T12:33:00.000-07:00

This last week, I've had the pleasurable opportunity to put prospective trainers through their paces in the pool (dang, that's alot of P's in one sentence).

Now the only thing I'm wondering, was I being mean when one participant said they had a cramp and I replied with "Suck it up."

The only reason I ask this is, merely, as trainers, is it our duty to participate fully with our clients even when we're feeling under the weather, or have some strange ache or pain? I'm inclined to think so, however, the same rules don't apply to our clients. We should always find ways to treat them with compassion, a steel lined silk glove (when needed) and fairness.

Required Supplement Sales Suck

2009-03-31T21:13:00.000-07:00

As a personal trainer we battle daily to strike a balance between exercise, nutrition and the occasional splurge.

We are frequently asked questions about products our clients have seen on the television. Each touted as a miracle drug to lose weight, gain muscle tone, more energy ... the list goes on and on. Those ads appear to offer the buyer a weight loss without the work, without dieting ... a quick and easy way to change your body ... in a word, they're selling you Bull-oney.

Yes, Bull-oney.

Did you know those claims are not verified by the FDA? Nor is there regulation regarding the effectiveness of those fabulous, no-work diet pills. Or that a good number of the models in the ads are "out of shape" for reasons such as being pregnant (or recently pregnant), pushing out their stomachs, slouching and so when they correct their posture they look slimmer and taller ... oh and a great tan hides many a flaws a body may have.

http://www.chathamjournal.com/weekly/living/health/cr-dietary-supplements-70707.shtml

Well, back to the task at hand ...

... a short time ago I received an email regarding a job requirement. It is to sell a specific minimum dollar amount of supplements each month. I hate this idea. I cannot emphasize the amount this job requirement saddens me. The facility I work at has taken on a business model reminiscent of everything I dislike about other facilities that trade in physical fitness.

What we are supposed to be doing as Personal trainers is educating people on making healthy lifestyle choices, you know ... eat your vegetables, sleep enough, drink water, avoid excessive amounts of sugar, exercise regularly ... the basics that our parents used to nag us about.

For clarification, I have taken supplements before. I have gotten decent results, however, at the same time, I was exercising regularly, watching what I ate and the use of supplements was purely that ... to supplement my exercise and eating plan to get the results I was looking for. Now, what you see advertised on the telly do not remind you about needing to eat and exercise correctly. During that period of time, when someone would ask me about what I was taking, I would tell them, but, would make sure they knew their results may not be the same as mine.

I have on many occasions offered websites for people interested in supplements in order for them to educate themselves about supplements and the potential side effects. I appreciate how clients look to us for advice, but, at the same time they should be educating themselves on supplements before they listen to the advice of someone not properly educated on the products available.

Hacks and regulation ...

2009-03-30T16:23:00.000-07:00

So, the last time I posted I merely posted the merriam-webster definitions of the word "hack" and for some reason the topic is still on my mind ...

... to whit, I was chatting with an associate this morning and the topic of regulation came up. The question being, is regulating trainers a good idea or a bad one? From my personal point of view, regulation can be a good thing, by creating some form of standardization, or a set of parameters that people should subscribe to. On the other hand, regulation in itself doesn't really belong in the training environment.

Bear in mind, trainers come in all shapes and sizes with experience, certifications and degrees from accredited universities. Nor is there one thing that can be taught to make a trainer any better than the next person. To be a trainer requires an ability to relate to people, humble themselves by having the good sense to recognize shortcomings (as well as strengths), acknowledge that learning happens from watching and listening to other people as well as the usual necessity of being ablt to motivate a person to do something they wouldn't necessarily do.

Back to the question about regulation ... I am biased. I think that there should be some minimum set of requirements for a person to take a certification exam. For instance ACSM (American College of Sports Medicine, and considered by many to be the gold standard) requires the applicant to have at least a Bachelors degree prior to taking their Health Fitness Specialist examination. My husband would call this an artificial method of gate keeping, but, again, this assures a minimum standard of education for everyone they certify.

Now on the other side, not everyone will be able to pursue a degree because of time, finances or interest, but, they still want to be a trainer. Which doesn't make them a bad trainer ... as long as they continue to educate themselves and not just rest on what they needed to learn to pass the certification test (which is what some people do). Learn more about the energy systems, learn more about metabolism, nutritional requirements (not just what the supplement vendor sells you - that is not a typo).

I used to work at one facility and they hired a kid as a trainer who used to be a receptionist. He constantly pissed me off because he was fully convinced that more protein was better, it didn't matter the activity levels of the client, it didn't matter the morphology of the client ... his mantra was more protein, with no regards for published nutritional guidelines ... he should not be allowed to touch a client, and I really hope he wasn't.

Hack, and I would whole hearted support a regulated standard for this moron.

Hacks

2009-03-28T12:24:00.000-07:00

From m-w.com

Main Entry:: ¹hack
Pronunciation:: \ˈhak\
Function:: verb
Etymology:: Middle English hakken, from Old English -haccian; akin to Old High German hacchōn to hack, Old English hōc hook
Date:: 13th century

transitive verb1 a: to cut or sever with repeated irregular or unskillful blows b: to cut or shape by or as if by crude or ruthless strokes <hacking out new election districts> c: annoy , vex —often used with off
2: to clear or make by or as if by cutting away vegetation <hacked his way through the brush>
3 a: to manage successfully hack the new job> b: tolerate hack all this noise>intransitive verb
1 a: to make chopping strokes or blows <hacked at the weeds> ; also : to make cuts as if by chopping <hacking away at the work force>
b: to play inexpert golf
2: to cough in a short dry manner
3: loaf —usually used with around
4 a: to write computer programs for enjoyment b: to gain access to a computer illegally

— hack it

1: cope 2b hack it any longer2: to be successful couldn't hack it in the world of professional sports

***

I can't stand the "average" ones that loaf around the gym, they pose and preen like they know what they're doing when they're really a danger to themselves and others (no, I really don't have much of an opinion -- not!).

In the gym, when looking for someone for advice, just because someone is grunting really loudly, proclaiming their abilities ... they may not be the best choice for advice. Bottom line, watch out for meatheads (or as phrased in an episode of "Angel"), "talking meat," since they may cause you greater injury than if you had asked one of the people on staff (wait a minute, some of these folks are also the ones on staff at some gyms).

Ask questions, be concerned if they agree to everything you say, babble uncontrollably about bull-oney to try and sound intelligent ... and it need be ... run (don't walk) away.

To organic or not to organic ... that is the question

2009-03-05T22:10:00.000-08:00

As a trainer, I'm often hearing people talk about how it's always better to buy organic foods. As such their arguments for the extra costs are: organics taste better, healthier since they doesn't have all the added chemicals, kinder to the environment (again the lack of extra pesticides and other related chemicals) ... blah blah blah.

I confess, I buy heirloom tomatoes which are generally organic and painfully expensive, but, darn it they do taste good. Almost as good as what we grew in the yard when I was a child. Do, I make a point of buying organics for other produce/proteins/groceries. Not so much.

Below is a link to an article at the New York Times, which brings some of the concerns about organics to the masses.

http://www.nytimes.com/2009/03/04/dining/04cert.html?_r=1&ref=dining&pagewanted=all

Loss of soul

2009-03-03T08:12:00.000-08:00

I'm digressing from my original intent today ... it's about the loss of soul. Not mine, mind you. Mine is intact and functional, I'm referring to when you've been at a really great place (physical location), and you've had the opportunity to watch it degrade into a soulless (as if physical locations have a soul), unhappy mass.

This is my sad tale of woe today.

Last night, I went to the gym with my husband and didn't have as much fun as I have had previously. On the way over in the car, I explained why I don't like going and it boils down to, I don't feel like it's me time. By that, when I'm there, people come up to me, I walk up to people, answer questions, pick up towels ... all that rot.

So back to last night. The place was a mess! Towels all over the place, people talking on cell phones, brat kids clanging weights ... the usual stuff you would expect to find at a less expensive establishment (except for the towels, at the cheaper place you would have to bring your own). By the way - yes, I said less expensive and cheaper. Does that infer anything about the place that I work at? Probably. I know the towels part infers something (if you've ever shopped a health club). Oh and we used to provide cups for water. People have complained about the missing cups.

How else is the soul departing the establishment? Memos with the constant content about selling supplements. I personally don't care if someone chooses to use supplements, just be well educated on what you're taking and be aware of drug interactions. I do care about my clients and strongly recommend they do their own research instead of taking my word on supplements as gospel. I've taken then, I've suggested them to friends (only when asked and with the strong disclaimer: they may not do the same things for you and if you feel funny at all, stop taking them), and I've researched a number of them. Can you say - mostly crap?

One more thing ... applying quotas to a group of individuals whose goal is supposed to be the health and welfare of their clients is anathema to their goal. Alright, let's rephrase that ... trainers should be training their clients on how to be healthier and eventually train themselves out of a job. Applying quotas CAN (or MAY) cause the trainer to look at the client as a number, not a person. When we forget about the person we're working with, we may as well hang it up, since they ultimately make or break our career path. Trainers can get sloppy when they're chasing numbers, when trainers get sloppy, people get hurt.

Scary Trainers

2009-02-15T20:38:00.000-08:00

What make a trainer scary?

A lack of knowledge.
A lack of interest in coaching from others.
Thinking they know it all.

Now there are a variety of tests (NASM, ACSM, NSCA, ACE, etc) for a person to take to be certified as a personal trainer, or a person can go to school and get a 4 year degree (Kinesiology). These are the things most people do and as part of it are required to do a certain amount of continuing education to keep themselves current on the trends in exercise and what's new in health sciences (including nutrition).

Then there are the others ... those who take all their years of "working out" and think that translates into being able to train others. Wrong! Although they may have many years of "working out" that doesn't translate into understanding the science of why or the mechanics of how.

I once worked with someone like that, someone who thought he/she knew it all, felt persecuted, had exercised for years and didn't take a certification exam. Now, I want the next person to succeed as much as I want my own personal success. But, when someone's ego stands in front of others offering help for success ... hello foot, meet high velocity shotgun pellets. Hello potentially dangerous ramifications for the training client (aka negligence lawsuit).

I personally would prefer a trained monkey to spot me that this particular soul, or was this individual another version of a trained monkey?

Trainer vs. "Trainer"

2009-02-15T20:16:00.000-08:00

What makes a trainer a trainer (as opposed to the guy who wants your money in exchange for exercise instruction)?

I'd like to think it's the ethics of the person, their intent and how they behave with their clients. I could be wrong.

My personal goal as a Personal Trainer is to provide my clients with the education and tools to make smarter choices for themselves in their daily lives thereby enhancing their overall quality of life. This applies to clients on the Fitness floor as well as in the Group Exercise studio. To put it best (as someone said a couple of days ago) ... work myself out of a job.

In the current day and age, there are health clubs where the trainers have sales quotas. I (personally) think this puts the trainer in a odd predicament. The trainer begins to think of the client as a dollar sign, cheapening the clients experience. Faulty thinking, the trainer should view the client as a client, a project, a person ... with individual needs and realities. Now that said, we do need to be able to pay the rent, so a balance needs to be struck between how we view people and provide the best service we can to those we are working with. Dollar signs or not.

Unfortunately, the economic realities of the club system are predicated on how much a person can sell and their individual revenue stream for the facility.

Children shouldn't have to diet

2009-02-10T22:30:00.000-08:00

Back when I was young(er) Phys Ed was a required course and you had to participate (much like the dreaded frog dissection in biology, which is a different topic). Every 10 - 12 weeks we were to pick between two activities and like them. The good news is, they didn't offer the girls wrestling and didn't offer the guys Modern Dance.

In recent times Phys Ed has fallen off to the side, homework gets in the way and video games take up the rest of the play time. Kids just don't get out as much as they used to. In days of yore, we would be in the yard playing ball, in the street riding bikes or if you were lucky enough to live near a large undeveloped space, go exploring.

Enough nostalgia.

Last year there was an article I found to be really depressing. It had to do with the increasing percentages of teenagers (up to the age of 19) taking adult medications for diseases traditionally associated with aging. Diabetes, High Blood Pressure and High Cholesterol. The numbers showed hundred(s) fold increases in Type II diabetes, High Blood Pressure and Cholesterol problems in teenagers. Yes, kids are taking adult dosages for adult age related metabolic syndromes. This should not be the case. The other problem with teens taking adult medications is there is no true known effect of what these medications will have on their developing bodies. A two-fold problem.

So, how do we fix this ... In addition to limiting the sweets, encourage your children to be active, get them off the couch, offer them a few bucks to mow the lawn (I don't know the going rate for lawn mowing these days) with a push mower (skip the gasoline one, it's harder on the environment), walk the dog / pick up after the dog, go to the park and shoot baskets ... just get out there and do something.

One more thing, it's a lot more fun to be active outside than thinking about diets as a child, tween, teen ... those are things only adults should have to worry about.

Too many vitamins, too little time

2009-02-09T22:43:00.000-08:00

Several months back, my parents signed up with a multi-level marketing program for vitamins. I've taken high dose mutli-vitamins and I personally don't like vitamins, they make feel a little iffy. However, let's be clear, I have nothing against vitamins. I have a problem with the amount of each vitamin/mineral a person gets each time they take an over the counter tablet, as well as how much they cost.

In lieu of the high expense tablet, I would rather people do the following: eat your fresh leafy greens (the darker the better), fruits, vegetables which aren't cooked to mush (which by the way should never be smothered in cheese), and lean proteins.

However, if you still feel like you're lacking, a multi-vitamin makes excellent sense, but, watch out for the dosage/percentage of daily allowance being provided by each vitamin/mineral. What our bodies cannot absorb get funneled out and well, that output can be expensive over time. I'm generally fond of taking 1/2 of what the manufacturer recommends (generally I do eat balanced meals). You'll keep up on your vitamins/minerals and well ... you might save a couple of dollars while still feeling great.