Shaken, Not Stirred: I Like My Boobs

bigstock-Breast-Cancer-Awareness-Concep-87988418.jpg

I like my boobs.

That hasn’t always been the case. They’re big, and they get in the way. They make sleeping on my tummy difficult. And don’t get me started on shopping for bathing suits and bras, which has NEVER been enjoyable.

On the positive, though, they did an amazing job of nourishing my baby for her first year. And I’m pretty sure I’ve had more than a few dates in my short, single past life because of them.

So, in all, I like them.

Now one of them is sick. Infected, really. It’s not my boob’s fault. It didn’t ask to be afflicted with a cancerous tumor. In fact all my boob has ever asked for is a lot of lift and little bit of affection.

The two biggest concerns I’ve had since the pronouncement of breast cancer have been chemotherapy and losing my right boob, AKA mastectomy. My chemo fears come from the debilitating condition it could leave me in. I want to work. I want to see Samantha cheer at every football game this fall. I want to have fun with my husband. I want to make things. I want to go to Quilt Market. I want, I want, I want. And my fear is that chemo won’t let me do this because I’ll be too worn down.

Turning to the mastectomy concern, and I’m not sure if I can really put the correct words to it here, but I’ll try. I’m not worried about reconstruction, the look of it, or me. Heck I’d probably be perky for the first time in my life. It’s more that I believe God has given us most of our body parts for a good reason, and that our bodies ultimately behave as a system made up of sub-systems and parts. To lose a fairly dominant part of my system scares me. Sure, I can live without a breast. Unfortunately, millions of women–and men–have. But I don’t want to learn firsthand how permanently changed my system will be because of the loss.

Of course, if I’m told that it’s either the boob or the rest of me, the rest of me wins.

The good news is that, as of right now, it looks like my boob stays right where it’s always been.

Yesterday we had our first date with the surgery oncologist. She was wonderful–caring, intelligent, patient. She has small hands, which I’ve been told is really good for a surgeon. Dr. B’s life work is breast cancer. She drew pictures and explained why a lumpectomy with radiation would work. She flat out said that once my treatment is done, that I will not die from THIS breast cancer. This is not going to kill me, as long as I follow orders.

More importantly, if all early signs and tests are correct, the need for a mastectomy is nil. Woohoo!

I’ll spend a lot of time here comparing my infertility experience with this, because they are very similar, in terms of the volume of information I need to process, as well as the ongoing care. During my time as an IPX (Infertility Patient Deluxe), I learned many things about modern medicine. I’m remembering them fast and they still apply:

  1. Doctors practice medicine. They are not all-seeing, all-knowing immortals with a definitive answer for what ails the body. What they are is the best provider of the most educated guess possible in a given scenario. It is unfair and naive for any patient to believe that 100 percent of what they are told is what will absolutely happen. Doctors know this and remind us, but sometimes patients forget. So, for everything I’m told now, I know that there is always the possibility, the potential, for a change in diagnosis or protocol, and that’s okay. I can live with 99 percent right now.
  2. Patients are the consumer. Doctors (and all of the staff accompanying them) are the service provider. The relationship requires some responsibility on the part of the provider to compassionately and competently give the best service possible. If I’m not being well-served, I have other options for care. For the consumer’s part, patience, clear communication and an open mind are required for a successful relationship. If I can’t be this way by myself at my appointments, then I bring a trusted friend or family member. This person’s main job is to stay in a clear, open mental place so that my anxiety doesn’t take over the appointment, and we get the information and care I need.
  3. I am the best advocate for my care. It is MY responsibility to make sure that test results are given to me, to show up on time for appointments (and to be patient if my doctor is running late because they are caring for someone else who might be in a worse spot that I am), and to communicate anything and everything relevant to my condition and care to my doctors. When I don’t assume responsibility for these actions, then I create barriers for my doctors that make it harder for them to care for me. Oh, and I never shoot the messenger.
  4. Accurate information is my weapon for fighting whatever is in front of me. Web searches are fine, but make sure the source is reliable. Take notes at appointments. Ask lots of questions. Be able to tell well-meaning peeps that I don’t want to hear the horror stories. But I do seek out people who have been there, done that, so I can expand the information pool. And create a support system. Fill it with the people who are willing AND able to put me first when I need that.
  5. Always remember that I am NOT a statistic. During our years of infertility, my husband and I blasted out EVERY. SINGLE. STATISTIC. And usually for the bad. To misquote one of my favorite movies, statistics are more like guidelines. I am an individual and my responses will be very specific, to me. So know the general, but don’t own it.

So far, my doctors, nurses and all of the support staff have been amazing. Loving, concerned, great follow-through, accessible, and I believe when we stop talking and start doing that they will be highly skilled as well. Yep. Feeling really comfy with the team we’re building.

My husband and kid are also feeling very cared for. They are with me for all of the appointments and have been treated as equal partners in this, which they are. Samantha is 15 and has requested that she be at everything possible. I love having her with us. I love not having to filter information, to know that she can ask any questions and that this gives her great security in my ongoing prognosis. It’s an amazing learning opportunity, and while she has had her moments, she’s been very strong and very open about how this is affecting her. If we need more help, we know who to call, but for now, it’s good.

So, bottom line is that I’m definitely facing radiation. Chemotherapy is still on the table as we wait for more test results and the surgery. But things are looking up, in a perky kinda way. More to come but for now, go boobs!

Shaken, Not Stirred: Bring it On

Female boxer

I have cancer.

Breast cancer.

(Sounds like “Bond. James Bond.” I can live with that.)

The news came yesterday, delivered through the sad and apologetic voice of my doctor, whom I have always adored for his kindness, quiet expertise and sincere concern for his patients. (Thank you Dr. D. I know you’ve got my back!) I learned years ago that feeling competently and kindly cared for by my health practitioners allows me to best rise to the challenges facing my body. And here I am, challenged again.

I’ve been in a few life-threatening health positions before. Four ectopic pregnancies, including one that ruptured; and a badly infected gall bladder all come to mind. But these were all occasions, events really, that required–and received–immediate emergency care to overcome. There wasn’t a lot of time to contemplate living with these conditions, because there would be no long-term attendance required. Check it off my to-do list and move forward. And I did.

This is different. Cancer is different. It’s a disease. It can become chronic, and fatal. It has to be wrestled to the ground, firmly, and then stomped into oblivion. That takes time. And effort. And pain. And intelligence. And no small sacrifice from me and my family–in body parts, financial security, emotional distress and lifestyle. After treatment, I, The Patient, will stand vigilant watch over my body for the remainder of my earthly life to ensure that The Intruder never returns. I’m tired thinking of this and I haven’t even had my first meet and greet with the oncologist.

I am also annoyed. Thoroughly annoyed. Bordering on angry annoyed.

Honestly, I don’t have time for this shit. I happily live a busy (that’s B-U-S-Y) life. I’m wife to a complex, amazing, loving and steadfast man, and mom to an incredibly mature and kind 15-year-old high school cheerleader who possesses high goals and demands constant and delightful management. I work two different but related professions. By day, I’m all about communications and relationships at our school district, I job that I adore. At night and on weekends, I’m all about communications and relationships with quilters and other creative people throughout the world, another job I adore. We have a big, messy, spread-apart family that often relies on me to help with varied issues. And then there are my/our amazing friends, who are my brothers and sisters by choice. I am blessed, and I well know it.

My clan is gathering fiercely right now, surrounding me and mine with their bagpipes, bodhrans and swords (forgive me, but I’m reading the Outlander series, again, and I’ve got more than a few Scots running through my brain of late,) and I know I am loved and as protected as possible.

But….

Yep. Just that.

But….

Years ago, I read something from another gal facing breast cancer. She hated the constant allusions between fighting a war and overcoming her disease. She didn’t get how the battle mentality related to her circumstances. She recoiled when anyone used the terms “fight,” “war,” or “overcome,” thinking them violent and inaccurate. At the time I thought I understood her peaceful eloquence and need for serenity and acceptance.

Not anymore. For me, this is a fight, and I don’t face it alone.

Already there are new people in my life–strangers–who will become incredibly important as we strategize how to approach this cancer. I have new doctors to meet and interview, new nurse navigators who have already provided me with reliable information. (Information is the BEST tool for providing at least the small illusion of control in a circumstance like this.) My life will expand to include acquaintances and those not-yet-met who will become added support and sources of information from the journey we now share. It’s already happening and it hasn’t been 24 hours since I heard the words.

I’m a writer, a photographer and a quilter. I tell stories through words, images and fabric. I was also a longtime infertility patient. It took 13 years to create my kid, whom we lovingly call our “Lab Rat.” It was only in that last year of trying for her that I became open about what we were going through. I worked as a reporter at a regional newspaper, the Ventura County Star, and took the wonderful opportunity given to me to write a weekly column about our road through infertility, in-vitro fertilization (IVF) and my subsequent high-risk pregnancy. To be able to put words to our experiences and feelings, and to share them freely, was the most cathartic experience in my life up until that time. What came back was an unmeasurable amount of solidarity and support; the sense that the pain we lived through was lightened by helping others with our information; and the concrete knowledge that when I need help, I need to speak up and ask, and it will come.

It’s only normal for me to do it again, here, with cancer.

So, the early signs are that this is Invasive Ductal Carcinoma (IDC). Yep. I have another acronym to add to my personal lexicon, and my educator buds are ROTFL because I’m the one who always teases them about living in a pot of alphabet soup, as educators do. It looks like it was caught early. It looks like it is treatable. It looks like I’ll live to tell the tale. These are preliminary, best-guess looks based on preliminary info. I’m not be a cynic; I just know that there are more test results that haven’t been looked at yet. That’s what Tuesday is about.

I’m so proud that my daughter, Sam, wants to come to the appointment with me and my husband. She has big, solid dreams of becoming a surgeon when she’s done growing up. I don’t mind being her lab rat for a while. And one of my oldest and dearest friends also wants to come. Karen is a social worker who works in a hospital and is one of the most logical, clear-thinking and kind people I’m blessed to have around me. So, yeah, she gets to come, since she asked. I figure if someone loves me enough to want to crawl through some of these foxholes with me, who am I to say no? And Stephen immediately thought it was a good idea. Open book, Folks. It’s the only way for me to go.

In the meantime, know that if you’re one of my many beloved ones who I have not been able to call yet, that it’s not me ignoring you. It’s me trying to wrap B-U-S-Y up for a while. That’s one of the cool parts about being able to write this journey, because I can keep those who care updated even if I can’t get on the phone. For as long as possible, I want to keep daily life normal for my family and me. There’s a lot of prep work I need to do to free up my schedule and my brain for the battles to come. So, please, forgive me for not getting to you yet? And yes, feel free to call, text or email, if you’re so moved. Right now, all needs are met and we’re in a good place for this fight. I am okay.

Prayers are welcome. Hugging your own loved ones on my behalf is encouraged, because life is short. And only happy vibes will be received for the immediate future.

Oh, and yes, I’m making myself a quilt for this time. Because that’s what we quilters do when we’re facing a life moment: We hit the fabric. I’ll be documenting that as well, because those of us who share this obsession with needle, fabric and thread never get tired of watching the birth of another quilt. Just saying.

Bittersweet Road Trip: Long Beach International Quilt Festival

Long Beach Logo

It’s bittersweet because it’s the last one, folks. That’s right. After this weekend, the short-lived International Quilt Festival in Long Beach will no longer exist. And personally, I completely understand why.

This poor show, started by Quilts Inc. around 2008 (I’m digging in my memory banks here, so forgive me if I’m a year off) had the misfortune of launching right when our U.S. economy started lurching. The first year was filled with excitement,  but some logistical challenges may have turned some visitors and vendors away.

Those challenges–namely the convention organizers not realizing that when quilters come to a show they come hungry, needing extra women’s facilities and in huge masses–were quickly and efficiently rectified by none other than Karey Bresenhan, co-founder of Quilts Inc. and one of our quilting pioneers. Like a batting-armored knight charging in on a quilted white scooter, Karey took the higher-ups at Long Beach to task for NOT listening to her staff’s warnings about how a Quilts Inc. show attracts the threaded throngs and within 24 hours the situation was made all better.

I was there that night at an art quilter’s event when the charming and calm Karey recounted the conversations of the day in her delightful Texas drawl and underplayed with her characteristic charm about how these issues would not be repeated in subsequent years. I vowed right then to always be on this wonderful woman’s good side!

But, that first day was about as hellacious as having to rip out a whole quilt’s quilting stitches!

Long Beach International Quilt Festival 2010--The throngs are waiting!

Long Beach International Quilt Festival 2010–The throngs are waiting!

Still, there was potential. Finally there was a Southern California regional quilt show option besides Road to California. And no, I’m am NOT dissing Road in any way, shape or form. I’ve enjoyed it for years and will continue to. But, I’m also a dedicated quilt show slut (yes, I used that word) and can really never have enough options for spreading my Visa around to out-of-the-area vendors.

By the next year, the crowds had thinned somewhat and the purchases even more. My unscientific survey of the many vendors I knew at the show, coupled with my many years’ experience in evaluating the depth of purchases my sister quilters made, led me to determine that while the enthusiasm hadn’t waned, the financial resources had. (There’s a formula for this: take the weight of the bags carried and multiply that number by the amount of bags and add that to the number of trips to the underground garage to stuff said bags into the trunk and you’ll come up with the Dedicated Quilter Quotient -DQQ).

The following year, the vendors, now concerned themselves with the cost of vending at a show and their own financial struggles to stay on top of the officially pronounced Recession, held back. They lessened the amount of inventory they bought for the show, or they didn’t come at all. And here’s the thing about us quilters, whether we’re selling or buying, we have long memories for our show experiences and sometime unfairly apply an older experience to a current decision to attend.

And that, in my professional show hopping experience, is what happened at Long Beach to lead to the sound business decision (given the circumstances) to basically move it and change it up some.

Instead of renewing their contract to do a 2014 show, Quilts Inc. created a new show. Next August, Quilts Inc. will unveil the Quilt! Knit! Stitch! show in Portland, Oregon. This new approach comes from a sane response to the growing variation in our stitching demographic. Today’s quilters are really not just quilters. We’re knitters and sewists and fabric hounds and we love to play with our fibers and fabrics. By expanding the purview of the show–which has been happening under the heading of “quilt” anyway for years–Quilts Inc. acknowledges that there’s more to what we do than getting 12 stitches to the inch. I might even have to make the trek north to see this in action!

For this weekend, though, I’m going to enjoy visiting my Q-buds and work on some blog posts for my other love, Generation Q Magazine. My dearest Vicki Tymzcyszyn will be a team member for Charlotte Angotti’s Iron Quilter Challenge on Saturday night. I will be reporting on the antics found there as three teams compete for the title of Iron Quilter. It promises to be hilarious!

If you’re coming our way, find me on the convention center floor. I’d love to say hi! And yes, I will try to post some pics next week from Festival.

Many quilted hugs

Jake

Life is Sweet!

Warning: When I can't find anything better, I exploit my kid and my cats and flash pics of their antics. Remember, you have been warned!

I think the first time is always the hardest, don’t you?

I can think about tons of things I want to share, to write about, to flash pictures of, but none of them are up to the task of being the first.

So instead I’ll just say that I hope you’ll come visit me often, find out what’s happening in my personal corner of the q-niverse (everything is Q with me!) and share what’s going on in your life.

And at the end of this, I just want to know that we all laughed together, thought together or created together. That will be plenty!