Another Year, Another Mammogram
I know that the yearly mammogram you get after you are finished with all treatments for breast cancer are supposed to cause anxiety and stress but that wasn’t the case for me yesterday. I admit I was quite stressed getting to my appointment, because we are now dealing with 2 broken vehicles and I had to ask a friend for a ride into Boston, but once I was in the building I was calm, cool, and collected. So calm in fact, I fell asleep in the chair waiting for my results. Head back, mouth open, deep snooze until I heard my name from far, far, away, “Frances Kolenik”. My head snapped forward as I wiped drool off my chin and looked around at the other woman in their starched blue and white gowns, busy reading or worrying. I wondered if they overtly stared at me while I slept or stole fleeting glimpses of my slumbering while thumbing through their magazine. I’m sure they thought it was wildly inappropriate.
My mammogram was over quite quickly. Done in half the time it used to take. Since I have only one real breast, they only squash and flattten one side into their heineous machine of torture. The nurse I had was exceptionally rough yesterday, handling me like a slab of meat. “Just slap that baby up on this counter…ya come on, up here, stand on your toes. That’s it, now stand like that while I screw this vice down on top of it..one…more…turn…there now don’t move, and hold your breath.”
Like I could breath if I wanted to.
But I was spared the agony of having to do this on the other side because they don’t check the implanted side. So within minutes I was sent off to the waiting room with the other women to await my results, and in my case catch a few winks. My results were normal. This was good news but nothing I didn’t already know. See, it is not the other breast that concerns me. I don’t expect to get breast cancer in my other side. That would be a new cancer. What actually causes me anxiety is that a cell from the cancer I already had somehow escaped the onslaught of chemo and has attached itself elsewhere in my body. The area surrounding my implant particularly worries me-but they don’t check that. Nor have they done any other scans on me like they do for others that have had the same treatment. I am still not quite sure why.
I did see Dr. Christian who ‘manually’ checked my chest and said it seemed fine. I told him about a pain near the sight of the original cancer and he said he had no answer and that maybe it was a “ghost” pain–pain some people get in an area of the body that has been removed or amputated. I am not quite convinced that is true, but for now this answer will have to do. I will bring it up again with my oncologist in August.
So as far as the year mammogram check, which some think is a big deal, I am not feeling that great sigh of relief. I am happy to have a clean scan in my right breast but what would make me really happy is a PET scan that would show no evidence of cancer anywhere else. This, again is something to take up with my oncologist.
The good news is this…a full year has passed since the end of my chemo and I am here, and feeling stronger than ever. I certainly don’t need a test to tell me that.
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PMC update Week 7: When Maps Lie
It’s been a while since I updated you on our PMC training. Susan and I have been logging some serious miles lately to make sure we are ready for the big event. Last I spoke to you we had just finished our first long ride of 30 miles which at the time seemed difficult. Now 6 weeks later we are right on schedule and finished our back to back rides of 50 miles and 80 miles. These longs rides take us from Reading through North Reading, Wakefield, Lynnfield, Boxford, Tewksbury, Georgetown, Andover, North Andover, Billerica, Carlisle and Concord. On our 50 miler we made it to Walden pond which is a destination I was hoping to get to last year and during the 80 mile ride we even pedaled into Plaistow, New Hampshire for a short time.  Susan at beautiful Walden Pond We seem to be training correctly and slowly building on our previous lengths because neither Susan or I seem particularly sore after these long rides. Mostly I am hungry. After the 70 miler I came home and ate anything I could get my hands on–for about 5 hours straight.
 Where are we? What seems to be harder than the actual riding, is the planning and plotting of our routes. Susan (who I now call ‘my Sherpa’) spends hours and hours on Google maps and with a paper map trying to figure out roads we can safely ride on, writing out directions on a tiny piece of paper she tucks into the leg of her shorts. Sometimes though, even with her meticulous cartography, we get lost. Usually it’s because the road that exists on the map, does not exist in real life. This happened twice last week, the first was in Middleton and was unfortunate because we were being chased by a ‘hound-dog’ who thought we were lunch. “Faster Susan”, I screamed back to her as my fight or flight reflex pumped my legs into overdrive, leaving my partner to her own resources. I’m sorry, but when it comes to biting, snarling, vicious dogs, it’s every biker to themselves. I blew past Susan, the hound hot on my heels, and right when I thought I was losing him, that he might be slowing down, the road ended in a path of rocks and gravel. “Uh-Oh.” Our hound friend stopped too, looked up at me with a grin and licked my leg. Then he ran off after a chipmunk, which was lucky because we then had to turn around and ride back down the road we just came and I didn’t want him following us all the way home. We encountered a non-existant road again on our 80 mile trek at the top of a huge hill in Tewksbury. Or maybe it was Haverhill. Susan pulled her directions from her shorts and stared at the folded paper with disbelief, “But the map said that this road turns to Lilly Pond Rd!” Susan gets very upset at these mapping malfunctions because she stays up all hours of the night to ensure we have a pain-free ride. She takes it very personally. I stared at the gated path across the street and thought that if that’s Lilly Pond Road then we are certainly not going to be going down it. Last year during our training we would sometimes get lost and were often filled with great anxiety. But the difference between last year and this is that we don’t panic anymore. I guess we have been out there long enough now to get a better sense of where we are. The last mishap put us into Georgetown where we weren’t supposed to go that day but where we had been on another ride so we knew how to get back on track. We are confident in our ability to find our way home. I guess you’d say we have become “seasoned” riders and at the same time we are discovering glorious farms and forests close to our home that we never would be able to encounter in a car.
Susan is away this week so we will have to make up 60 by this weekend when she gets back. I am kind of enjoying the break and I hope she is too, but if I know my partner, she’ll have me back in the saddle before she has even unpacked her bags. Thankfully I picked a bike partner/sherpa who is far more dedicated and disciplined than I. If you would like to donate to our PMC ride and have 100% of your donations go to cancer research, you can find us at: http://www.pmc.org/profile/FK0012 Fran & Susan’s 2010 PMC Training Guide – Long Ride Goals |
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| Week | Beginning | Dist | |||||||||
| 1 | May 10, 2010 | 30 | |||||||||
| 2 | May 17, 2010 | 40 | |||||||||
| 3 | May 24, 2010 | 50 | |||||||||
| 4 | May 31, 2010 | 60 | |||||||||
| 5 | June 7, 2010 | 50/40 | |||||||||
| 6 | June 14, 2010 | 70 | |||||||||
| 7 | June 21, 2010 | 80/50 | |||||||||
| 8 | June 28, 2010 | 60 | |||||||||
| 9 | July 5, 2010 | 90/60 | |||||||||
| 10 | July 12, 2010 | 80 | |||||||||
| 11 | July 19, 2010 | 50 | |||||||||
| 12 | July 26, 2010 | 70 | |||||||||
| PMC | 84/81 | ||||||||||
Summer Bucket List
My kids are out of school at the end of this week which had me pacing the halls of my house yesterday , sick to my stomach. It’s not that I don’t want my kids around all day, everyday–not at all. I actually enjoy the carefree days of summer with them. But yesterday I was in a panic about our serious lack of finances and how I can’t afford to send anyone to camp this year, especially my middle schooler who still struggles with finding friends and who spends most weekend days home alone. “What are we going to do all summer?” I kept thinking”What are they going to do?” Drama camp costs $400, hockey camp over $200,the beach parking lot costs $25 at a pop, the movies for all of us runs over $50,the mall? Forget it.
My panic was just about at Ativan-level when I walked by the refrigerator and saw this, posted by my 10 year old daughter:
“Things to do over the Summer with Maddie(her friend)”
1) Jump in a freezing pool 5 times
2) Rollerblade up the Mineral Street hill.
3) Silly-String each other.
4) Dance in the rain in our bathing suits.
5) Plant a tree named Fred.
6) Design a new drink.
7) Put pink streaks in our hair.
Stay up all night at a sleepover.
9) Go in the pool at night.
10) HAVE A PARTY.
Not only did this list make me smile, it blanketed me with such nostalgic warmth that my panic melted away by reminding me that summer is not about camps and spending money we don’t have–it’s about dancing in the rain in our bathing suits and staying up all night long because we can! It’s about remembering what it’s like to be 10 years old when the world was safe and school was out and lemonade stands were at every corner. Thank you Maeve, for reminding me.
The Power of Words
Maybe it was the full moon. Or a simple coincidence. On two separate occasions last week, I had two different friends tell me in their own way how much I meant to them. One was via text basically telling me I was a great friend and the other was told to me like this :
“So I told my sister how happy I was that you had come back to work for me, how much I loved having you around. And then my sister asked me if I had told you that.”
And in that way, she told me without having to actually come out and say it directly.
Because it is really not easy to stop the course of normal conversation to tell a friend or family member just how special they are to you. It can be very difficult and feel awkward; the thoughts are there but the words themselves get lodged in your throat like when you’re half-way through a peanut butter sandwich on wheat and you realize that someone has already finished off the milk.. Once you get them out, though, you can change someone’s life. I felt great this week knowing that there are people in the world who appreciate me.
Ironically, the day before this happened to me I was sitting on my deck thinking about how proud I was of my 16 year old. His ability to get through three knee surgeries, keep his grades up and his wits about him, when he walked in from school. In a moment of courage I decided to speak up, pushing aside any insecrurities about sounding foolish and sentimental, and I called him out to the deck.
“What?’ he said, poking his head out the screen door.
“I just wanted to tell you how proud I am of you and what a great kid you are.”
I waited for the eye-roll and the “whatever” that might come to let me know that I was being silly but instead he smiled and said, “Oh, Thanks.”
There are many things I have done very wrong as a parent over the years–I’ve screamed until I peed my pants (literally), I’ve made idle threats, pretended to listen and realized too late that I had missed something of grave importance. I’ve used foul language and called my kids names and even spit in my son’s face when he was little to teach him not to spit at people( this tactic although deemed by experts as “the worst thing you can do”, actually worked). I have beaten them at games and jumped around in a victory dance, let them watch too much TV, eat too much candy, and get too little sleep. These slights in my parental ability are evident and uneraseable–some are character flaws others are just plain learning as I went along.
But here was something I did right. And it has dawned on me recently just how simple it all is. If I tell you you’re great, than most likely you are going to try to be even greater. Because my friend told me that it pleased her to have me working for her, of course I will try even harder to be a proficient worker. And my other friend who told me I was great makes me feel like I want to be a true friend to her always. I don’t want to disappoint these friends. As I feel my son would not want to disappoint me. If your kids know you expect excellence from them and that you think they are amazing then guaranteed they will try even harder.
I made a pact with myself when I was diagnosed with my breast cancer, that I would not let an opportunity pass to tell someone how I felt about them. As I get further away from my treatment I can feel that urgency slipping away, so I have to remind myself just how important this is. Because we can never assume that anyone knows how we feel until we tell them. Never underestimate the power of words. Tell your kids and your friends or even the cashier at your favorite Dunkin’ Donuts today how much they mean to you. Trust me, it will only feel awkward for a second–after that it’s pure enlightenment.
PMC Week 1 : Long Ride Goal
| Fran & Susan’s 2010 PMC Training Guide – Long Ride Goals | |||||||||||
| Week | Beginning | Dist | |||||||||
| 1 | May 10, 2010 | 30 | |||||||||
| 2 | May 17, 2010 | 40 | |||||||||
| 3 | May 24, 2010 | 50 | |||||||||
| 4 | May 31, 2010 | 60 | |||||||||
| 5 | June 7, 2010 | 50/40 | |||||||||
| 6 | June 14, 2010 | 70 | |||||||||
| 7 | June 21, 2010 | 80/50 | |||||||||
| 8 | June 28, 2010 | 60 | |||||||||
| 9 | July 5, 2010 | 90/60 | |||||||||
| 10 | July 12, 2010 | 80 | |||||||||
| 11 | July 19, 2010 | 50 | |||||||||
| 12 | July 26, 2010 | 70 | |||||||||
| PMC | 84/81 | ||||||||||
This week we met our goal, riding 31 chilly, windy miles on Tuesday. We pedaled into the wind up Haverill Street to Marblehead Rd. in North Reading tackling for the first time this year one of our most dreaded hills. It was a good feeling to get it done knowing that in a few weeks this hill will seem easy. On our way through Harold Parker Forest we discovered a new Alpaca Farm that was only established last August and realized that we hadn’t ridden this way since doing the PMC last year.
We got out again on Thursday for a 34 mile ride into Middleton. So as of our first official week of training, Susan and I are right on schedule. We will keep you posted as our training continues throughout the Summer. If you would like to donate to our ride go to http://www.pmc.org/profile/FK0012.
Thanks for your support!
A Year Without Baseball
I wanted to give an update to those who are wondering what’s going on with Cal’s knee surgery. First, the background:
In the Fall of his freshman year, after Excel Orthopedics diagnosis him with OCD of the knee (OCD stands for big words that mean he has a dead bone behind the knee cap), must quit High School hockey team. Waits to see if it will right itself. It doesn’t.
So we go to the head of Orthopedics at Children’s hospital who says he needs surgery. Cal had his first surgery last May 5th,2009.
Rehab and recovery over the Spring and Summer. Is unable to try out for Freshman baseball team.
Back to check progress in September–no go. The bone did not grow.
Second surgery in October of this year. Four compression screws are placed in knee in hopes that it will stimulate growth. Hockey is out of the question. But that’s ok because it is baseball that is his true love and he is sure he will be ready by the spring.
Recovery and rehab over the winter.
Back to re-check in February 2010–an MRI shows that the bone has grown back! Cal contacts the high school baseball coach, volunteers time for his clinics and offers to be manager of the team. Coach says he can try out when he is able.
But there is still pain– a new pain– and swelling.
The swelling starts to spread to his thigh. Back to the doctor, an emergency MRI, and back the next morning to Children’s.
They find nothing. The OCD is healing and they can’t understand it. They draw fluid to test for infection or Lyme Disease, and send him home.
Cal voluntarily puts the knee brace back on and walks with crutches because he is in so much pain. He is unable to help with the baseball team as the new players try out.
Two weeks later back, to doctor who throws up his hands and says the Lyme test was negative and we need to see a rheumatologist as he may have Arthritis.
Phone calls indicate that the rheumatology department will call me in 10 days to set up an appointment in June. This is unacceptable I say. Sorry Madam, they will call you. They don’t call. For 2 solid weeks I fight with the ortho office to get me into Rheumatology ASAP and I hear “we will do what we can, someone will call you back.”
Luckily, there is a cancellation, so they can see Cal. It is the end of March.
For four hours, three doctors probe and poke and question but they don’t understand. So they send us for a contrast MRI.
The following Monday we go for this MRI. Cal, my rock solid 16 year old, winces in pain and lets slip a tear as they inject the fluid into his vein that will shed some light on this ridiculousness, “It hurts” he says, “I know,I’m sorry” I say.
One more week passes and the baseball team has been chosen. Scrimmages have begun.
It is now April and back in the surgeon’s office he tells us that the new MRI indicates a tear in the meniscus on the opposite side of the knee that they must have missed in the other 2 MRI’s. Surgery is needed but he is leaving town for 2 weeks. We schedule surgery for May 5th. Exactly a year from the first surgery.
I tell the doctor yesterday, before they wheel Calvin away, that he better take his time and look around inside the knee to see everything that is going on. His smile is as condescending as it could be. “Stupid lady” it screams.
Recovery room Conversation:
Doctor: Was it shown that Cal had Lyme Disease?
Me: No, it was negative.
Doctor: I’d like to start him on the medicine anyway since I can’t understand why there is so much swelling in the knee. We fixed many small meniscal tears and smoothed it out. Something is irritating the cartilage and I can’t figure it out.
Me: If he had Lyme it would be a little late now wouldn’t it.
Doctor: Not necessarily (complete bullshit).
Me. Let me ask you something. Isn’t it possible that he had an allergic reaction to the compression screws placed in the knee?
Doctor: (Look of enlightenment) It’s possible. Yes, quite possible. As a matter of fact we found the head of one of the screws that was still in the knee that hadn’t broken down.
The fact that he doesn’t make the correlation between the errant screw-head and the irritated cartilage baffles me. But I go along with his Lyme theory long enough to send my husband to CVS to fill the prescription.
When he handed me the prescription I couldn’t believe what I was seeing. “You must have picked up the wrong meds”, I said reading the label.
It was Doxycycline–the same medicine Cal has been on since February for his acne. I guess it is also what they give for Lyme Disease. Since Cal has been on this drug already for 4 months,I imagine he DOESN”T have Lyme Disease. What is even more disturbing is that it is in his records all over the place that he is on this med. They asked me 10 times at the hospital what medicine he takes. Had I not looked at the bottle, I would be double dosing him everyday for 4 week–400 milligrams a day instead of 2oo.
This doctor has been the head of Children’s Orthopedics since 1974. I think it is time he retired.
If it was the screw causing the problems let’s hope that this is it. Hopefully, now that it is gone, he can recover and get on with his life. He has missed Freshman and Sophmore years in sports which is a huge detriment when it comes to colleges but hopefully he can pull it out for Junior and Senior years.
One thing is for sure. I have never been more proud of my son. Throughout this two years (as well as the 2 before, dealing with my cancer) he has remained upbeat and strong. He has stayed away from the drugs and alcohol that is so prevalent in his circle of friends. He has not become angry, withdrawn, or let himself wallow in self-pity. All of which he has every right to do. I am not sure I could have stayed as positive.
So that’s it. maybe you should all say a prayer today that he heals quickly, just in case, a little insurance never hurts. Maybe, just maybe, he can play Summer Baseball.
The Fear of What Might Be
Last week, during our first day of lounging on the warm sands of Myrtle Beach, my oldest son asked me why I hadn’t been in the ocean yet, knowing that usually I am the first one in. Even the coldest North Shore waters of Gloucester in June are not enough to stop me. I generally feel that if you are going to take the trouble to travel to the beach you HAVE to go in the water. Otherwise you might as well stay in your backyard on a lounge chair.
“I’m not hot enough yet,” I said.
On the second day, he asked me again.
“What’s wrong with you? Why aren’t you going into the water?” he said, shaking his wet head at me like a dog.
“Knock it off,” I said fending off his watery attack with my raised hand, “I just don’t feel like it.”
“Why?”
“Jelly Fish.” I said,thinking about how every other year when I took my morning run along the beach I would see their gelatinous bodies washed up on the shore every few feet knowing how much pain these beautiful creatures could inflict, their long sinewy tentacles poised for attack.
“Mom, I haven’t seen any Jelly Fish on the beach this year.”
“I know, neither have I,” I said, “But that doesn’t mean they aren’t IN the water.”
“So you mean to tell me,” he said, with all his 16-year-old wisdom, “That you are going to base your decision on fear of what may be in the water? Of what might be?”
“I guess so,” I said, and went back to reading my book.
I did eventually go in the water a few times over the week, but I didn’t linger–in and out– but I went in. But Calvin’s words stuck with me, because isn’t that what I have been doing over the past few years? Living my life in fear of what might happen? My cancer is like those jelly fish. A few years ago we saw it all with our eyes, the tumors ,the tests the results, as clear as those masses washed up on the sand. But now those masses are gone, there is no physical evidence anymore. The cancer is gone. But is it really? It could easily be swimming in the currents of my blood stream, waiting to sting me again, translucent and beautiful, its tentacles trying desperately to spread out. Because of this possibility, of what might be, I take a drug everyday, Tamoxifen, that I hate, that makes me fat and puts me into menopause and causes joint pain and can lead to uterine cancer– but I take it, just in case.
But these decisions on what medicine to take and how long to take them are also based on scientific tests, so they must be right. Right? The decision to take medicine is not only based on what might be it is backed up by numbers and percentages and facts. So I know that if I don’t take the Tamoxifen then there is a 40% increase in the likelihood of my cancer returning, and I base my decision on that. It’s also the reason I agreed to taking Herceptin, the drug that messed up my heart, since my Her2/neu positive cancer needed that drug to remain at bay. Unfortunately though, the doctors and the scientists just can’t seem to get this stuff right.
According to a study out last week in the New York Times, scientists are now discovering what all along I feared; the tests they do on tumors to see what their markers are (mine was Her2/neu positive and ER/positive) are now being considered untrustworthy. This means that the drugs used to treat these particular types of cancers, which have many side effects, may be unnecessary.
HER2 tests, for instance, can give false-positives up to 20 percent of the time, wrongly telling women they need the drug when they do not. Five percent to 10 percent of the time the tests can falsely tell a woman that she should not take the drug, when she should.
“The science is still evolving,” Dr. Bloss said. “What was true last year may not be true this year.”
My original tests were done at a local hospital in Winchester. When I decided to continue my treatment at Dana -Farber Cancer Institute in Boston, I asked on numerous occasions if they had re-tested my tumors to make sure they were Her2/Neu positive. My oncologist and my breast surgeon said they had but I never felt like they actually did a re-test. Answers were quick and vague and from their answers it seemed to me that they just looked over the results from Winchester Hospital. This study shows that different hospitals test differently. There is no standardized tests available.
The two large national studies of Herceptin for women with HER2 positive early-stage breast cancer were just starting in 2001 when Dr. Perez, of the Mayo Clinic, a principal investigator, had a moment of truth. Women were having HER2 tests at a variety of places — community hospitals, major medical centers, national labs. Dr. Perez decided to retest tumors in a central lab to confirm the results.
The outcome stunned her and her colleagues. Twenty percent of the first 119 women whose initial tests indicated their tumors had excess HER2 turned out not to have it on retesting.
“We all felt, ‘Oh boy, we have a problem,’ ” said Dr. Wolff, a study investigator. “This was huge.”
So the studies were modified to require central labs to retest all the tumors.
Yet the discordance remained — one-sixth of women told by local labs that they were HER2 positive were not on retesting.
I was also found to be ER positive. Which means my tumor was fed by estrogen. For this reason, I take Tamoxifen for 5 years. Again, this is based on what I assume is the initial testing done at Winchester Hospital. The article states that there are discrepancies with those tests as well.
Like the HER2 tests, other molecular tests for breast cancer also have problems. Those tests, for estrogen receptors on breast cancer cells, determine whether cancer will be thwarted by drugs that deprive tumors of estrogen. They can be wrong at least 10 percent of the time. Some estrogen-depleting drugs, while generally safe, increase the risk ofosteoporosis and, depending on the drug, can also cause joint pain and increase risks of stroke and cancer of the uterine lining.
Estrogen receptor tests are a muddle, noted Dr. Edith Perez, a breast cancer specialist at the Mayo Clinic in Jacksonville, Fla. Quite a few tests are being used, but Dr. Perez could not ascertain exactly how many or how good they were in predicting whether a tumor would respond to estrogen-depleting drugs.
So guidelines were set up, but still they found discrepancies.
There are all sorts of reasons why different labs can get different results, said Dr. Mitch Dowsett of the Royal Marsden Hospital in London and a member of the United States committee that formulated HER2 testing guidelines.
In borderline cases, pathologists can disagree. Or stain can pool in areas where a tumor was crushed or damaged, making it look, to inexperienced eyes, like a positive stain.
Twelve years after Herceptin was approved for women with advanced breast cancer, “we’re still trying to refine the testing,” said Ms. Pellegrino of Genentech.
It is too late for me to do anything about the Herceptin. If my testing was wrong and I took the Herceptin unnecessarily that I can not change that now. I will caution any one reading this who is in the beginning stages of their cancer, though, to make sure you demand to be tested 3 or 4 times until they get it right.
As far as the Tamoxifen goes, I haven’t decided yet. I could stop taking it now, I could dive into that water of faith and hope to swim for years without the recurring sting of cancer. I will probably ask to be re-tested at some point but then it is up to me. Do I base my decisions on fear of what might happen or do I trust in science and doctors who are now seeming to me to be quite baffled about how to handle cancer in all it’s forms? Or do I say the “hell with it”, throw off my towel and run head long into the waves, taking my fate into my own hands? I would very much like to stop living in fear of what might be, I believe there is a true freedom in that way of living and the only real way to find peace.
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I admit it. When David Gray comes to town, I am the army wife whose husband has returned from war, the crazy lovesick teenager seeing her newly kissed boyfriend for the first time, I am as excited as a schoolgirl all tingly and giddy and silly and I can’t help myself. Judging by the screaming fans at the sold out show Saturday night, I guarantee that 99% of the woman/girls in the crowd felt exactly the same way. Many of the men too although a few looked like they were going through the motions for their dates/wives/husbands. One screaming fan told me after she ran down the aisle to stand next to us in our 2nd row seats(!) that she “got divorced over David Gray”. I am not sure what she meant by that although we high-fived as if she had just won the lottery; I am hoping it doesn’t mean she slept with him, since, well, I imagine that if David is going to stray on his beautiful model-wife, it wouldn’t be with this woman. But I suppose you just never know.
The show began with the stage veiled by a gossamer curtain. David looked like an angel come down from high while the band played the first few notes of Fugative off his latest album, Draw the Line. When the curtain finally lifted, the crowd went wild. It became apparent at that point that this would be no ordinary show. The connection between singer and fans was almost immediate and wholly palpable.
Throughout the almost 2 hour set Gray alternated between his guitar and piano bringing the crowd to tears as he dusted off some of his incredible older tunes including some from 1996′s Sell, Sell, Sell –when he was ironically selling very few records stateside and was still a relative unknown in the US.
The first time I saw David Gray was thanks top my friend Sandy, who, just back from the South by Southwest convention, put my name on a list at Avalon to see this “incredible singer/songwriter” that reminded her in so many ways of Van Morrison. “White Ladder” was just released, an album he wrote, produced and created on his own in his house. I almost didn’t go to that show as it was a snowy St. Patrick’s Day and I did not want to be on the roads with a bunch of drunks. I am so happy that I did go, as I was introduced early on to this man who can turn a phrase and a chord change into something so beautiful that sometimes you think your heart will burst wide open…in a good way, of course.
I almost didn’t go to the show Saturday either since it was the night before Easter and I had baskets to fill and tables to set, and pork roasts to stuff. Once again, I was so happy that I went. I have seen David Gray about eight times over the past years, once in London where we hung with the band members wives, a few times at Avalon, once or twice at the Wang, and just last fall at the Opera House. That show lacked a lot for me. Possibly because I was way up in the balcony but also because he left out so many of my favorites like “Shine”. There were other times he was not so great on stage. I saw him once at Avalon shortly after his father died and he stopped in the middle of a song and was visibly agitated with the audience. Somehow we had pissed him off. Not Saturday though. The love fest with the audience was so clear. This show blew the rest away.
His classics like Shine and Everytime were juxtaposed perfectly with his newer material. Remember how I said that at a show I look for the “stellar” moment? Well, this show had so many stellar moments. David Gray’s sense of timing is uncanny. He never rushes through tunes like ‘Slow Motion” and “Aint No Love” hanging on to the last note of each stanza just long enough to make you want to scream but never too long to seem overdone. His extended version of Nemesis with his arms held out skyward was so incredible that Gina and I could do nothing but keep shaking our heads in wonderment at how amazing this man was.
He came back for his encore obviously happy to be there with us and ended the show with a lengthy and toe-tapping version of “Please Forgive me” that had the entire house on its feet and singing. Oh by the way, I sing at David Gray shows. I sing loud and often –I can’t help it. I know it’s one of my rules to not sing at shows but when the whole place is singing it is difficult to stay quiet. Plus, his words, are just so, so, god-damned singable.
Years ago, I met Mr. Gray at a back stage meet n’ greet at Avalon. Those were the days when I could still pretend I worked in the music business. When my turn came to talk to him I was so overcome with awe at how great I thought he was that I did the most ridiculous thing–I squeezed his face. Yes, that’s right, like an old Italian grandmother I took his face in my cupped hand and squeezed his face mumbling something pathetic like “Grrrr”. He looked a little taken aback, and most likely a little scared by this crazy woman grabbing him, but I could think of nothing else to do. I am still hoping for a second chance. I didn’t get to meet him this show, although we waited out back with the rest of the groupies until we got tired. But I did get the set list so I could make myself a perfect CD to listen to until the next time he comes around.
How To Be a Better Fan
About a hundred years ago, before giving birth to 3 children and moving to the Suburban wastelands, I worked in the music industry. I was in sales and marketing for WFNX radio and then worked for one of my clients, BMG Music. Although I no longer have my hand in that world, I have always tried to stay current with up and coming acts. I love finding my “new favorite” band –which for me, can happen as often as weekly. Especially this time of year. It’s Spring in Boston, which means that after a long winter of writing, bands begin to tour again. I still love seeing live shows.I love being close to the music, feeling it with my whole body–not just my ears. I love meeting other fans who are as passionate about their music as I am–and learning from them. Sometimes I will leave a show on such a high that can last for days–James, Stereophonics, Stellastarr, Buffalo Tom are few that come to mind. Other times I am sorely disappointed in a band that I thought was phenomenal , was just OK live–I loved Jem’s album a few years back and she was just awful live.
Saturday night I saw one of my favorite bands–Spoon–at the House of Blues. I was so excited to see these guys, and hear Britt Daniel’s scratchy voice croon over his sometimes purposely distorted guitar riffs. For the most part is was a great show –although they were seriously lacking in a horn section which they had in New York, that would have added great depth to songs like the Underdog. I think I would have just skipped playing that song altogether as without the horns it sounded drab and ridiculous.
When I see live bands I am always on the lookout for that “stellar” moment. The moment when they take one of their songs and expand it until you think your head will explode…or they bring in a guest dancer from Zimbabwe or freshly picked guitar player from outside on Landsdown Street …or they interact so convincingly with the audience they you are sure you will be having beers with them after the show. There were no stellar moments for me at the Spoon show. I think they must have been present, but unfortunately I missed them because I was so irritated with the crowd that I couldn’t focus on the stage. It was a sold out show at The House of Blues, which is my 4th favorite place to see a band–the Paradise and the Middle East, and TT the Bears being in my top 3. Any venue bigger than HOB I usually avoid. I just can’t see the point in sitting in a seat to watch a band, it makes no sense to me.
So, because of my irritation with the crowd I have come up with a few simple of rules for club/concert goers that will make it a much nicer experience for everyone. Feel free to use these for yourself or pass these hints on to your children who will soon be attending these shows with me as they are getting older. I plan on making sure my kids hold these rules near and dear to their hearts. If I teach them nothing else in their lives, I certainly can train them how to be good fans:
#1. Leave Your Pocketbooks Home: Girls, please, is it really necessary to carry your Jessica Simpson Hobo purse with you? I am so tired of bumping into your bag every time I try to turn around. They stick out under your arm so far behind you that you can’t even see or feel who you are hitting. If everyone left their purses home the band could probably sell an extra 100 tickets for all the space they take up. What is in there that is so needed at a 2 hour show? A blow-dryer? All you need is license, cash, cell phone, and a small lip gloss for touch ups. These items could fit quite nicely into your pants pocket. Oh you say you have no pockets? This brings me to….
#2. Lose the Stretch-Pants; Not just because they have no pockets, because honestly, do you think those look good? And for the love of Gucci please do not pair the stretch pants with Peter-Pan boots. Learn this now. Any fashion from the 80′s was a nightmare then, now it’s a recurring nightmare. The only person who can actually wear stretch pants and look good is Angelina Jolie and have you ever seen her in them? No. Becuase it is seriously un-cool and Angelina is the epitome of coolness in women. So when dressing for a night at a club to see a band think “What would Angelina wear?”. I have rarely seen her in anything other than black jeans and a t-shirt. That is your best bet.
#3a Do Not Sing unless asked to by the band. This is a serious pet-peeve of mine. Although I can tell that you know all the words and have probably studied them for hours on lyrics.com, I have come to hear the band–not you. If the band asks for a group sing-a-long then by all means belt it out, but otherwise please sing under your breath, or better yet ,in your own head.
#3b. Shut Up. I realize there are people you may need to talk to, your friends are there with you and you may have comments about the band, but if you need to tell your friend a story about what happened to you at the 7-11 last week then move to the back of the club away from the rest of us who came to hear the band.
#4 Position Yourself According to Your Habits and How into the Band You Are . If you are really into the band then by all means you should be standing down on the floor in front of the stage. If that is the case then you should be so enthralled that the thought of missing a single song should make you anxious and therefore you stay on the floor where you belong. To you I suggest that you do your drinking before the show so as to avoid unneccessary trips to the bar. If you want to listen but will be getting drinks throughout the show then position yourself closer to the bar or midway between the stage and bar. If you could give a crap about the band then either stay at the bar or better yet go next door to the Irish Pub and wait for your friends. I get really tired of trying to watch the stage and having the same people bang past me from the floor to go get another beer and then slosh past me again to get back down on the floor usually losing half their drink on my sleeve. Pick your spot and stay there. The show is not that long.Oh and another thing….
#4b. Do Not Send The Largest Person in Your Group up for Drinks. Seriously. If I have to make room for someone to “slide” by me 40 times during the show it would make it a lot easier if it were some petite little girl instead of, well…you know what I mean…
#4 Careful What You Eat Before. Guys, save the Chile Cheese Fries and Keg beer for after the show. Do us all a favor, please. I have never been able to handle crowd farts. Everyone looks around to make sure that it’s obvious that it wasn’t them…but it had to come from somewhere…
#5 Know Your Spacial Relations. Finding your own space at a sold out show can be tricky. Sometimes it hard to find an area that is open with a direct sight line to the stage. And often time you have to move a little to make room for someone standing to your left or right. I have no problem doing this when the person gives a smile and lets me know that they are just trying to grab a little space to see the show. If on the other hand, your are drunk or obnoxious and push me while you dance/jump around without an apology and then invite your 5 rude friends to come stand in front of me in the space I made for you alone, then we have a problem. My friend Joyce taught me the “club stance” years ago which is standing straight, arms crossed with legs separated. This way you take up some physical space while creating a strong foundation for balance if any loser decides to knock into you.
Saturday night I watched a very tall guy and his shorter girlfriend walk into the crowd. He actually checked to see who was behind him, realized he was blocking their view and moved to the back of the crowd. His girlfriend looked back at him askance and he motioned with his hand over his head to say, “I am too tall to stand up there.” This guy understood his own space. I later saw them positioned near the bar, her on a ledge above him so they could both see. I also watched a girl in stretch pants stand directly in front of me when there was plenty of space to both my left and right. She was promptly told to “move” by my friend, Gina. And she did.
#6 Get a Room. Really. I am sure that you guys love this band and probably make out to them all the time but I don’t need you standing in front of me sucking face so I have to move left and right as you do just to see past you to the stage.
Well, that’s it for now. I think if everyone were to follow these simple rules, the world would be a happier place…the club world anyway. Stay tuned for actual band reviews. It’s going to be a busy Spring and as I do realize that this is an expensive habit–so is knitting–and I think music is a lot more fun.
Ode to My Port
I did not want you in my chest
It felt like an intrusion,
To have you underneath my skin
Alien -like in your protrusion.
At first you hurt me,caused me pain,
My neck looked like a road map.
You made it difficult to breathe
My energy was sapped.
Eventually I trusted you,
Saved my veins from collapse.
And with each hospital I did visit,
I would always ask,
“Can you use my port today,
It saves my arm from snares?”
And the nurses said with saddened eyes,
“Oh no, we wouldn’t dare.”
But when I got my chemo,
You were always there.
To swallow up the poison,
That made me lose my hair.
You made yourself accessible
when blood they took to test.
You were dependable and painless,
For which I felt quite blessed.
Oh port-o-cath, Oh port-0-cath,
your time has come to pass.
No longer resting in my chest
The end has come at last.
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Someone mentioned recently that she found it hard to believe that I could say this was “the end”. This woman who also has cancer thought that there is no way I can ever put this behind me and that “every decision I make from now on will be affected by my cancer.” This may be true to some extent. Obviously I am still on Tamoxifen, which I hate, because it deletes my body of estrogen which in turn makes me hold on to about 10 pounds of extra body fat. And obviously my body has been altered by my mastectomy and my heart has been compromised, but, as I wrote to her:
I am making a conscious decision to say that today, with the removal of my port, I will no longer be defined by this cancer. I am hereby putting a period on my cancer sentence. And if the cancer comes back, then I will deal with it as a new phase of my life. For now, for me, this is the end of a two-year hell-ride and I am officially calling it quits!
Mothers with Cancer
