Electromagnetic, completely kinetic - music/part 2

“Experts” say, to help re-connect couples, they require “couple time”. Very true.
My husband and I found at least one concert a year truly benefits our relationship, bring us together, by partaking in something we both enjoy. Collectively, we have a wide array of musical interests.
One band we can’t miss has been hitting the circuit hard. Tesla. They’ve become our yearly fix. A necessity. I’ve lost count how many times we’ve seen them, yet it’s never quite the same. Never disappointing. In this age of concerts, it’s hard to imagine a great show without fire and explosives. However, these boys have… something. Something inside themselves they release on stage. There’s no need for glitz. They transmit energy, display enthusiasm, and ooze passion that out shines fiery explosives. There’s an element of freeness and playful attitudes that emerge, though they are serious musicians. While I’m no Plaster Caster or Bangor Sister, I’ve had my share and been around the block enough to conclude, Tesla is among the best live bands to grace your ears you’ll ever see (or rather, hear). The fans (the Troop) drawing from the expelled energy, are enthusiastic as well. Exceptionally friendly. Extremely loyal.

I was disappointed when Bobby and I missed Tesla last year, because my chemotherapy overlapped the concert. I felt pretty crappy. Not to mention it’s difficult to bang a bald head when you’re used to having a long mane to toss around. Our boys are back in town. Particularly close by at the Genese Theatre in Waukegan, IL (Friday, April 17th). I’m mending and motivated to be there front (and hopefully) center, and while my hair can’t be tossed, I at least have some cover. We have our Tesla tickets already. Click here to Get yours from Ticket Master HERE….
Revitalize.
SHAKE OFF THAT DUST!

“….
It’s not where you’re at, or where you’re coming from
When all is said and done, you can call it,
Heavy Metal, Hard Core, Punk, Pop, or Thrash
You can call it anything it don’t matter to me
Call it what you want.
It’s ALL music to me…”

CellSearch™ - testing cancer cells

Something from the depths of the ocean? Attractive as it may be, it ain’t pretty as it looks. No. It is something I worry about almost every day. Just one of these. Something anyone who has or had cancer. A single cancer cell. Just one, can change your life forever. Just one haunts you.

There is a new-ish test out there now called CellSearch™. It detects cancer cells differently then tumor marker tests and much more accurately!

Below excerpts from RARITAN, N.J.,…
“Veridex, LLC… (Feb 2008)… announced that the U.S. Food and Drug Administration (FDA) has granted an expanded clearance for the CellSearch™ System to be used as an aid in the monitoring of metastatic prostate cancer (MPC) patients. The CellSearch™ System currently is cleared for monitoring metastatic breast and metastatic colorectal cancer patients. The CellSearch™ System identifies and counts circulating tumor cells (CTCs) in a blood sample to predict progression-free survival and overall survival in patients with metastatic breast, colorectal or prostate cancer, and can do so earlier than the current standard of care. The results of serial testing for CTCs with the CellSearch™ System provide additional information to the oncologist and does so earlier than other currently approved diagnostic modalities, thereby allowing the oncologist to make more-informed patient care decisions.”

If you are concerned with your regular testing’s accuracy, ask your doctor to do the CellSearch™ test. Mine did. It can give you piece of mind, or a heads up for your doctor on which treatments are working for your, if you need a full course of treatment or if just a couple is enough .

… “Currently, oncologists often have to wait several months before they can determine if a specific treatment is beneficial to the patient. The CellSearch™ System helps physicians to predict disease progression and patient
survival any time during therapy. "I am extremely pleased that we now can offer this test to patients with metastatic prostate cancer," said Dr. Louis Fink of the Nevada Cancer Institute in Las Vegas, Nevada. "We have been evaluating the clinical utility of the CellSearchTM System in patients with metastatic prostate cancer since January 2007. Our findings demonstrate a strong indication that the baseline number of Circulating Tumor Cells (CTCs) is prognostic, and that the number of prostate CTCs is altered by the therapy." Dr. Nick Vogelzang, also of the Nevada Cancer Institute, continued, "We have compared CellSearch™ CTC test results to the standard clinical and biomedical parameters, such as prostate specific antigen (PSA) measured in MPC patients. A decrease in the number of CTCs is most often associated with patients successfully responding to therapy. Further analysis of CTCs may provide information as to the most efficacious treatments for specific individuals."…”
… “The CellSearch™ System is the first diagnostic test to automate the detection and enumeration of CTCs, cancer cells that detach from solid tumors and enter the blood stream, and is a new class of diagnostic tools. The system's specificity, sensitivity and reproducibility allow for serial assessment of CTCs as early as the first cycle of treatment to help evaluate disease progression sooner. The CellSearchTM System was originally cleared by the FDA in January 2004 as a diagnostic tool for identifying and counting CTCs in a blood sample to predict progression-free survival and overall survival in patients with metastatic breast cancer. …”

Wait. I kind of wonder, why haven’t we heard MORE about this if it has been around for metastatic breast cancer for FIVE YEARS?!

… “The authors of this study concluded: "The very short median progression-free survival in patients with elevated circulating tumor cells at the first follow-up visit suggests that these patients are receiving ineffective therapy." In addition, as recently as November 2006, a metastatic breast cancer study was published in Clinical Cancer Research where the authors concluded: "The results reported here indicate that the evaluation of CTCs is an accurate measure of treatment efficacy." Additionally, the authors said: "The ability to serially quantitate and interrogate CTCs in patients with breast cancer makes possible new ways of managing and investigating the disease." Dr. N. Vogelzang is the recipient of a research fellowship grant from Veridex for the purpose of supporting independent research in metastatic prostate cancer patients.

For case studies, and more complete detailed information visit Veridex directly:
http://www.veridex.com/CellSearch/CellSearchHCP.aspx

sorry, just can't keep my mouth shut.

Transparency? It sure is transparent. So transparent you can’t see it. (You'll never easily find it all.)

Universal HealthCare? Na, it didn’t get shoved in there so you wouldn’t know we are going to control whether your doctor treats you or not. (anyone that may be a burden, with terminal sickness, we think is too old or have poor prognoses won’t be treated, because it’s a waste of resources.)

Spending money in stuipd places. (enough said there)

IT’S GOOD FOR YOU
YOU WILL LIKE IT (you don't know - you don't care)
YOU DON’T KNOW WHAT’S GOOD FOR YOU (stupid beer drinkers)
IT’S GOOD FOR YOU
Sign your life away, NO! that's ok, you don't need to read it.
YOU WILL LIKE IT (trust me)

B9

Boy oh boy, those biopsy needles are something...Going through your neck.... ew ew ew...

I received the results from the second thyroid biopsy. (have no clue what happened to the first results with a different doctor, they never called or forwarded to my oncologist.) After all I have researched and doctor conversations, I’m not surprised it came back benign. I expected it actually. It could really be benign or it could be misdiagnosed. Which seems to run rampant. It seems to be a tricky thing these little thyroid follicles and tests they use.

Please do not perceive me to be acting as negative or a “downer”. Yes, of course I’m happy to hear the word benign. On the other hand I’m just not 100% convinced. I may never be. (Had I taken the initial word of a doctor a year ago, and not gone with my instincts, I seriously wouldn’t be here today.) However, I carry a light heart. It just doesn’t feel urgent to me at this point and I’m going to continue to appreciate and enjoy what I have. “This much” more time to enjoy my life and the people I love and the wonderful inspiring and encouraging old friends and new.

your body is TELLING you something

Our bodies are unique complex machines. We may not have a dashboard light that comes on to tell us something is wrong with our engine, but we do have a temperature gauge. You get to know your car. When the temperature gauge in the car rises, we take note, because something could be wrong. It is a warning. We wouldn’t ignore that would we? So why should we ignore our own body temperatures? Just like our individual cars that run at individual temperatures on individual gauges, such is our own individual body temperatures. When it rises, it’s a warning signal.

About a year before diagnosis I developed a low grade fever of 99.0ºF. My temperature is normally 97.4 - 97.6. So 99.0 for me would be like 100.0 for someone who is the perfect normal of 98.6. When my temperature rose to 99º I developed the notion something must have been wrong. I had no outward signs of any illness other then my eyelids being hot. It continued day after day with no other signs. The doctors and nurses had the “what’s the big deal” attitude. Normal is 98.6 period. Especially if they took my temperature and it was 98.8º, certainly I must be a hypochondriac. Even though 98.6 is abnormally elevated for me.

To them, it was only 0.2 above normal. For me, it was a fever. But with them acting like I was being ridiculously unreasonable, I brushed it off as getting older. Body changes. Perhaps a new standard for me. Brain washed?

After being diagnosed with cancer, I asked 3 different breast and cancer doctors if body temperature has anything to do with cancer. 2 out of 3 said “absolutely! Yes!” Near the end of chemotherapy my temperature returned to my normal 97.4.

I then started radiation. Halfway through radiation my temperature began rising again. No other outward symptoms. Hmmmm. I told the nurse, my temperature is higher then normal for me. I asked if perhaps I should start a cancer inhibitor. I was told no and basically disregarded. The day after my last radiation, I started on Aromasin to cut off estrogen supply to any remain cancer cells. Two weeks later, my temperature returned to my normal 97.4. Coincidence?

Because Aromasin took a disabling toll on my joints and muscles, my doctor wanted me to try Arimidex then Femera to see if either of these would be easier on me. On Arimidex, it became easier and easier to move around the longer I was on it. But at the end of 2 weeks, my eyelids grew hot, and my temp was 97.9. It rose a little every day to 99.2 four days later. Now I’m thinking there IS something to fever and cancer detection. It would make sense that it was possible cancer was starting to grow again during the end half of radiation. When I started medication for advanced/metastatic cancer, the fever went away. When I started a different medication, I may have felt better, but is the fever is telling me, the medication isn’t working? I started Femara. Near a week the joint pain is back, I’m becoming less mobile, yet the elevated temperature is still there.

I did a search. I found a re-confirmation of my thoughts and what 2 doctors told me. The body’s immune system may be kicking in to fight the foreign cells causing temperature elevation or the cells are using up the body’s resources to grow, causing temperature elevation. Fever is a symptom of cancer. (What IS a fever for YOU? ) With that information, I might be able to draw a conclusion that Arimidex did not work for me. Which of course brings up the “oh shit, the cancer is growing again” fear.

Next… possible symptoms of cancer…

Laugh and Smell Roses

If you haven’t taken time to smell the roses or laugh lately, try to recall a time when there may have even been no words, when you and your friend saw something or remembered something at the same time, and just busted out laughing so hard you laughed yourself hoarse? How about a time before America’s Funnies Home Videos when you saw someone slip on the ice and go down kinda hard then he looked around to see if anyone was watching, and you tried so hard to not laugh at him, tears streamed down your face instead? Committed to your memory may be a time when you watched your baby roll over off her back to her belly the first time, or how proud you were when she took her first wobbly step. If recalling any of these simple memories can bring a smile to your face, you have “smelled a rose”.

I haven’t been on line reading posts, blogging or surfing. My daughter was off for Christmas break, so I figured it best I just step away from the computer while she was home, so I could spend my time with her. I do believe it’s the first time in a very long time I took time to “smell the roses”.

You ever laugh so hard, no sound comes out? The past couple weeks, we did. By the time the laughter sound came, tears were streaming. Time spent may not have been out and about Doing or Spending, but it was time spent. Definitely not time wasted. We both re learned how fun each other can be. Playing video and board games. Baking cookies from scratch. Talking. Joking.

Puppies have a healing quality and joy effect all their own. Watching my daughter with the neighbor’s puppies, not only the amusement they bring, but witnessing and detailing in my mind the exchange of good, loving feelings of pure happiness between them brings me enjoyment too.

Smelling the roses. Ahhhh, they smell good.

Finding a routine beyond turmoil

Nothing has been routine for me since first line / second line treatments. You settle into an odd routine having chemotherapy. There is a continued disruption that becomes your life. You adapt to anguish and pain while in a self preservation mode. There is a repetitive habitual schedule with radiation. While you start feeling better, there is a daily disturbance of travel and reminder of what has happened to you that you never dreamed could. By the time you get home, you are left with little time to do other things. When that is over, keeping with recent tradition, there is a customary standard met with more tests, doctors appointments and new crisis which follow. You are kept busy with ordeals. This is your life. It’s been demanding and hectic. When it ends (or slows down), you don’t know how to proceed. WHAT do you DO NOW? What is your life? Nothing has settled into “normal” yet. The only normal I’ve known for 9 months is sickness and drama. Once I get this thyroid thing, cervical problem, joint and bone pains, and settle into a medication that works for me, taken care of, I can search for a new normal, with routine, balance and quality.

It’s hard to find this new way to live life. You never forget you have cancer. You may have a day or two of enjoyment where you can toss it to the back of your mind, but you are always reminded one way or another, you are not normal anymore. Nothing is clear. In a split second I catch myself in the mirror on the way to the toilet, there’s a hazy distorted version of me, I see my hair growing back. I dream of a day when it will be restored to what it was (which will take a couple of years). Then I recall an article of a beautiful woman with two small children. She fought breast cancer. Four years after she had been diagnosed and treated, her hair restored, she’d passed. I wonder to myself, by the time I’m satisfied with the length of my hair, will it be my time? In a split second all of that races through my mind. Because of a mirror. I needed to pee and I passed the damn mirror. Besides hardships on your body, it’s a burden of the mind. One that leaves you wondering every day “when will it get worse?” “What is going to happen?” “Am I wasting my time?” “What would be a better use of my time?” “Do I spend my time for me? Or do I spend it for others around me?” I tend to think I need to spend it for others, with a small dose of me time. Eventually, I will not be able to spend it for others. Which isn’t something one should think about only because they have cancer. Spending time with your family or people you care about, truly appreciating them, should be everyone’s first priority. Because you never know what tomorrow holds. No one does.

For 2 weeks, I consciously held a pattern. I stayed off the computer, I spent most of my time with my daughter. I spent more time with my husband then I’ve spent in 9 months, which wasn’t much at all really but a heck of a lot more then strangers passing by like we’ve been. Sure there were a couple doctor appointments, but I’ll be dipped! There IS a life away from the computer. I spent more quality time with my daughter. My family. This is it. This iswhat I want. I’m going to find my way into a routine to incorporate the loves of my life.

Routine. Balance. Normal. Hopefully I’ll find it. Preferably one that with plenty of quality family time and rose smelling.

Second cancer….

The thyroid is an interesting creature. I’m amazed at not only the location and shape of it, but all the major functions it is responsible for regulating. It is a butterfly shaped organ, located at the base of your neck, under the adam’s apple. In short it controls the speed at which the body’s chemical (metabolic rate) functions. It affects things such as bowel movements all the way to heart beats. I’d love to delve into it more, but the learning part of my brain is tapped out. I’ve learned more then I ever cared to about other cancers and I so need a break. You can find more information here…. www.cushings-help.com/thyroid.htm or here http://www.mythyroid.com/

Scan results picked up THREE nodules / lesions so far… ((UltraSound scan picture below))
I fought for a week to get an appointment with an Endocrine doctor. Which I finally got at the last minute. They called me in the late morning as I was going out the door for another appointment to come in just a couple hours notice, being an hours drive away. I jumped on that! I brought copies of my Ultra Sound scans with me. While my mother will understandably cling to a diluted of version what she read (which I completely understand), the doctor was able to view the actual scan and determine that I do fall into the "5% of all patients" category (and 75% of another category of radiation patients) and have cancer in my thyroid. Thankfully he doesn’t feel it’s something I have to be overly alarmed about at this precise moment. It doesn’t appear to be the most aggressive type at this point. He believes it to be Papillary cancer (which is still a carcinoma). I will be having a biopsy this Friday. The office doesn’t think they will have the results for at least a week, which seems like an awful long time to me. Thyroid cancers can like any other cancer, spread into the lymph nodes and/or metastasize into nearby tissues, including lungs etc. But I am breathing a little easier with the impression that this may be a slower spreader. I may be able to enjoy Christmas yet.
(of course, I’m finding biopsies of this nature may not be very accurate. What does one do with that information?)

In case anyone decides to argue or challange the doctor findings, below is a synopsis what was on the report AND an actual US picture of my thyroid.

Scan report: "At least 3 nodules in right lobe – 2 = hypoechoic solid mass w/ coarse peripheral calcifications & suggestion of microcallcifications \ 1 = cystic appearing w/ bright internal echo."

ALSO - Please say special prayers for Chuck & Rosie and their family. They could use a boost of good!

Quick update.
I had full CT & MRI of brain & c spine last week.
There were a few we’ll call them “minor” things they could see, such as the areas I’ve had trouble with for years, spots on lungs, plus herniated discs in my neck. They also uncovered a spot on or near thyroid which has doubled in size (in 2 months) since August. I’m going in this afternoon for a scan to evaluate that spot further.
How am I feeling? Ok. I’ve never complained much over the years and just lived with pains, but am learning how important it is now to tell the doctor. Getting around has been progressively harder in the past month. Feel like a 90 year old woman shuffling around when I get up in the morning or get up from sitting… driving in the car… I have numbness which has gotten worse… there’s pains when I try to go to sleep at night… fatigue is up there as well, often times I just need to drop right where I am, which really sucks if I’m in the car… but I’m not puking so I consider that a very good thing.

And you’ll all have to forgive me if I ask you the same question over and over, or forget you told me something. I’ve come to the realization “chemo brain” has a meaning I really never expected could run so deep. I’ll ask my daughter a question and she’ll say “MOM! You JUST asked me that. TWICE!” Which I never realized. Because I sure didn’t remember the answer. Or someone will say, “I TOLD you that.” And I can’t sit back and recall it to say “oh yeah, I remember now”. Because I seriously have no recollection of that conversation.

I sure hope these are all things that will improve!

So if you see me and ask how I am, I won’t go through the whole routine… I’ll tell you what my grandfather always said… “I’m still kickin’!” …And for that, I give thanks.

Hope you all have a blessed Thanksgiving!

I was feeling particularly pissy with my husband the other day….

I heard a line form a movie that sums up how I’ve felt the last couple days, including this morning.
From tired wife to her husband: “You don’t need ME to meet every single one of your needs at the exact moment you need them met!”

He has been walking around for DAYS saying, what do we have to eat? Instead of pulling out great leftovers and popping them into the microwave, he wants me to do it FOR him. At times I enjoy doing it for him. Other times, I just don't have the oomph to.

===== Any way I slice it, what I wrote here wasn’t nice. It didn’t reflect the person I am or want to become. So I have removed the “husband bashing” portion. A couple people caught it before I retracted.=====

He hasn't gone through grueling cancer treatments that may or may not work. How could he rank that?

I was about to yell at my husband and tell him I have the ultimate excuse. I have cancer. That’s a damn good excuse. Yes. Damn good. Then I realized, perhaps it’s not the ultimate excuse. Things could always get worse. They REALLY COULD.
I still have all my limbs. They still function. Though it hurts, I can still walk. We still have a roof over our heads. We have a beautiful, smart, loving daughter. I’m still married to the man I was attracted to at the age of 13. He doesn’t have an abusive bone in his body. He’s an animal lover to the hilt. He truly loves and cares about his family. Men just have a different way of showing it. He is a joke cracking, belly laugh funny kinda guy, friendly to everyone. He always does something to make you forget instantly that you were even infuriated with him in the first place, which reminds me why I love him. And I feel guilty about even thinking things like this, much less writing about them. He works hard. VERY hard despite his back problems. He takes out the garbage and does his own laundry. Even though he ticks me off, I still love him and wouldn’t want to be with anyone else. I still have my loving and supportive mother. I have damn good in-laws (sorry I’m bitching about him!)

In the beginning, the initial shock, he was fantastic. Now that he sees me walking around and talking, he thinks everything is perfect great. No pains, no sickness, I don’t need help. I think he just needs a bit of a kick in the pants. Instead of dwelling, HE is trying to bring as much normal to the situation as possible. How can I bash him for that?