Read More About this Post Here

Posted on: August 11th, 2009 by
Comments Disabled

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at www.bethlgainer.blogspot.com, and her cat Hemi blogs at www.catterchatter.blogspot.com. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com./.

Photobucket


No Guilt Trip, Thanks

Posted on: August 10th, 2009 by
4

Advocating for yourself goes beyond obtaining the best possible medical care. Self-advocacy also includes knowing whether to say “no” to other parties and/or your own doctors who want to publish some of your medical information (anonymously), in the interest of medicine/science/public awareness campaigns.

Frankly, each of us must determine what information, if any, we want to share. I’m not suggesting that these parties or your doctors have ulterior motives. The vast majority have good intentions and wish to disseminate information in order to educate others.

But good intentions or not, it is up to the patient, not the doctor or any other parties, to share his or her story.

I am often asked to share my story of my breast cancer experience to others, and I pick and choose which information to share. For example, last year, my hospital asked if I wanted to write my story that would also be a part of a DVD and whether I’d participate in Survivors’ Celebration Day. Without a doubt, I said yes. To this day, I am glad and honored that I was asked to be a part of this.

A few years ago, someone in the media called me to ask whether, if my face were hidden and anonymity guaranteed, I would do a breast exam on air!

I told her, “no.”

It’s hard to say “no,” especially since it’s uncomfortable knowing that you might be angering others or hurting their feelings. But to put things in perspective, if you are not okay with it, then it’s not okay.

Within the last two weeks, my plastic surgeon’s office called me. Would I be willing, if I had complete anonymity, to have my before/after reconstruction photos released to a medical magazine? At first, believing that I’d be helping to educate others, I said I was interested. The receptionist kept calling me to ask if I looked over the release. That set me on guard, and my gut instinct was telling me not to do this.

And once I read the release, I knew my instincts were right.

Couched in a seemingly harmless document was language that made me uncomfortable. The document promised anonymity, but said that in certain circumstances it was possible that my identity would be recognizable based on “unique physical features.” Even worse, was the document stated that these before/after reconstruction photos would become the property of the American Society of Plastic Surgeons.

Now how could my body — which is my property and no one else’s — become the ASPS’ property?

The last paragraph of the release was the last straw. It said that although I’m protected by HIPAA, since the ASPS is not receiving its information through a traditional health care provider, my HIPAA rights might be violated.

I don’t know what side of stupid the doctor’s office thought I woke up on that morning, but there was no way I would allow my HIPAA rights to be violated.

I care deeply about educating others, and I’m grateful to my surgeon for his unbelievable skills. But, let’s be real here: he was paid good money to do his job.

I e-mailed my refusal to the surgeon’s assistant so that there would be a paper trail. Here was my response, which anyone reading my posting can use:

“After reading the Authorization for Release of Patient Photograph, I’ve decided to decline and not release any photos. It is in my best interest to not grant permission for the release of these photos.

Thank you for your interest, and I wish you the best in finding patients who are willing to participate.”

Short and simple.

And effective.


Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Photobucket

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Ari-licious

Posted on: August 5th, 2009 by
6

Photobucket
PhotobucketI’ve been back in the US with my daughter Ari for almost a week now, and her sleep schedule needs fine-tuning. She is very attached to me, which is great, considering that she hated me for the first four days of our togetherness.

Luckily, she’s sleeping now, which is why I am able to put a posting up. I could be smart and nap like most parents, but if I don’t write, I get a tad ansy. Still, she looks so precious when she sleeps.

Photobucket

The biggest hurdle — I’m sure that won’t surprise any parent — is bedtime. She’s a happy kid: until she is placed in her crib. Then she screams, wails, and cries, and I then go through all the self-doubt every parent goes through. I do my best to comfort my little one, but I’m getting the message loud and clear: being a parent is the hardest job on Earth.

However, even though my daughter seems strong-willed, stubborn, and very difficult when it comes to bedtime, I keep reminding myself of the many wonderful qualities she has, and that is what I want to share at this time.

Ari is a beautiful, sweet girl whose frequent smiles light up a room. She also laughs a lot, and although she mostly babbles, she sings a lot, especially when being strolled. I enjoy hearing her cute “la la la la’s.” Rather than sing her lullabyes, I sing her a rated G version of “Beast of Burden” and “Smoke on the Water,” as well as “Turn the Beat Around.” She loves them!!

My daughter is smart — she catches on easily. She hits the rhythm and tones of the aforementioned songs on key.

She imitates everything and has a great appetite for anything edible (we ate mule in China, which is fitting because sometimes she, like any toddler, is stubborn as one). She doesn’t complain about what I put in her mouth. She has eaten pot stickers, sushi (without the raw fish), beef and noodles, and just about every fruit known to humankind.

Her strong-willed nature is a characteristic I admire because I’m strong-willed myself. Like me, Ari won’t tolerate nonsense, and she will let you know that she’s not happy with you. While she smiles readily, people she doesn’t know must earn that smile or laugh from her. That just means she is good at judging character.

Overall, I’ve got a great, happy-go-lucky kid, who loves to play, laugh, and smile. See the following pictures for a look-see at her terrific personality.

Photobucket

Photobucket

Photobucket

Photobucket

Photobucket

Photobucket

Photobucket

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at www.bethlgainer.blogspot.com, and her cat Hemi blogs at www.catterchatter.blogspot.com. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com./.

Photobucket


Read More About this Post Here

Posted on: August 3rd, 2009 by
Comments Disabled

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at www.bethlgainer.blogspot.com, and her cat Hemi blogs at www.catterchatter.blogspot.com. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com./.

Photobucket


Wishing for a Medical Crystal Ball

Posted on: August 3rd, 2009 by
4

Just as we cannot predict what will happen in life, we cannot always predict the effects of medical treatments.

I was thinking about this, as I began hosting my own pity party of one today — due to the severe back and abdominal muscle pain that plagues me every day due to surgery done almost three years ago. Adding insult to this injury, I have to take Fosamax once a week because the chemo treatments had leached bone mass. Without the Fosamax, I’d be in osteoporosis at a relatively young age.

Most days I can handle this reality, but today it’s too much. Today I broke down and cried. Today the over-the-counter painkillers aren’t working. Today I feel helpless and angry at myself: that I wasn’t prepared for this post-surgery experience because I didn’t ask doctors the necessary questions.

Sure, I asked about the surgery and the chemo themselves: Would the surgery cause lots of bleeding? What were the during-surgery risks? How would the chemo make me feel? Would I lose my hair?

These are all valid questions to ask, and you can find tomes of information on what to ask doctors about various treatments and their side effects. However, what you often cannot find is accurate information on how a particular treatment regimen is going to affect the quality of your life years after the treatment.

Part of why this is the case is because each patient is different. However, part of why this is the case is because we as patients don’t ask the questions that are needed to inform us of what we can expect in our post-treatment lives.

So as I was struggling to do dishes, I thought of the kinds of questions I could have asked in addition to the what-is-the-risk-of-this-treatment type of questions. I wish I had asked whether I would be in pain and/or sick for years after the treatments and how they would affect the quality of my life in years to come.

My doctors are wonderful and would’ve told me the truth, but it was my responsibility as a patient to at least be informed about the road ahead of me.

Even armed with this information, I would’ve opted for these exact treatments, for the alternatives were even more ugly. I’d rather be in pain every day as a result of surgery than as a result of cancer.

It’s just that knowing the possible pitfalls of treatment in advance is just as important as knowing the positive effects of treatment. As patients, we need to know about these pitfalls in advance, if at all possible. And that requires doing research and asking doctors prudent questions.

And as I stood washing dishes and in so much pain, I thought that being armed with more information about what to expect post-treatment would at least have helped me cope better with the pain.

And today, even though I feel pain that seems too much to bear, I know I made the right choice — a choice that would help ensure I’d have a tomorrow.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Photobucket

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Blast-Off

Posted on: July 17th, 2009 by
Comments Disabled

Today is the day I leave for China.

I can’t believe this moment, the one I’ve been waiting for for so long, is finally here. I am savoring this moment, this beautiful summer morning.

Destiny is finally joining Wen Pei and me.

I’m bringing my sketchbook, pencils, and a good book on the plane. But most important, I’m bringing myself.

Hang in there, Wen Pei. Mommy’s coming to get you and bring you home.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at www.bethlgainer.blogspot.com, and her cat Hemi blogs at www.catterchatter.blogspot.com. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com./.

Photobucket


One Day to Launch

Posted on: July 16th, 2009 by
Comments Disabled

I can’t believe that tomorrow at this time, I’ll be at O’Hare Airport, getting psyched and ready for a flight I’ve been looking forward to for years. And I generally don’t look forward to flights.

As I’m sure my fellow travel group members are doing, today I’m tying up loose ends, making sure everything is packed and doing a few errands. I’m proud of myself because I did pack early and did all the major things last week.

Now today is a day of peace. 

I feel a calm, drowsy, almost meditative feeling. I’ve been sleeping well and taking Airborne at night….just as a preventive measure. I’ve shed my nervousness because even though I don’t like plane rides, there is one thing keeping me anchored to that sense of tranquility:

Meeting my daughter on Sunday.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at www.bethlgainer.blogspot.com, and her cat Hemi blogs at www.catterchatter.blogspot.com. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com./.

Photobucket


Day 2 and (gulp) Counting

Posted on: July 15th, 2009 by
Comments Disabled

Today is a rest day, at least a day to pamper myself.

I’m glad I packed way in advance, which gave me time to get a haircut.

After five or six calls to banks, I found one with crisp $100 bills. When I showed up, the teller seemed so skeptical. So as my Facebook buddy Kelly suggested, I brought my daughter’s referral pictures, and I saw the teller’s face soften. He still didn’t seem happy about having to swap my crappy $600 with his bank’s magnificent six, but that works.

My crisp $100 bills are happily flattened in a small book. Truth is, all I need are four crisp $100s, but I got two extra in case one or two does not meet the “crisp-enough” test in China.

I can’t believe I’m leaving in two days. Planning to sleep on the plane during what is China’s night to minimize jet lag.

Truth is, I’m excited and nervous to meet my daughter the night she’ll be brought to my room. I know we’ll be sizing each other up, and maybe we’ll both feel awkward, or maybe we’ll bond instantly. Who knows?

The thing is, we will be introduced in a quiet place without fanfare. I really lucked out.
Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at www.bethlgainer.blogspot.com, and her cat Hemi blogs at www.catterchatter.blogspot.com. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com./.

Photobucket


Day 3 and Counting

Posted on: July 14th, 2009 by
2

I’m not sure why, but suddenly it seems like the week has gone in slow motion. It’s like my brain has intentionally slowed the week down, so Friday seems eons away. At first I thought it was because I was dreading the trip, which I was last week, but then I realized something powerful:

I am slowing the moments down because I am savoring each moment leading up to the trip.

As a writer, I realize that I’m a reporter of sorts — recording all things significant and keeping this as documentation so that one day my daughter and I can read all of this, and she can know how much I love her that I am willing to face my fears of traveling head on just to go get her.

Pictures don’t necessarily say a thousand words. I’ve come to realize that, while pictures do capture wonderful moments in time, words capture feelings so much better.

The highlight of the day was getting my money and travelers’ checks for the trip. One less thing to worry about. There were these lazy-ass tellers at the front desk who said they didn’t know how to “do” travelers’ checks, so they directed me to an overworked teller in the back, who helped me out splendidly — except for the part where I asked for crisp 100 dollar bills. I explained that Chinese officials won’t accept the bills if they aren’t crisp enough, and she said, “Yeah, they’re real picky about that.”

To my horror, she gives me bills that have been crinkled AND folded!! I told her they weren’t crisp enough. She said, “I know, but these are the best we have. We never get new bills anymore.”

Ben Franklin would be appalled.

Now I’m going to be making phone calls to see if I can find a bank with crisp bills and trade them — kinda like trading baseball cards or playing Go Fish. I can picture the conversation:

Me: Do you have a crisp $100?
The Bank: GO FISH!!

Anyway, I’m confident I’ll find a bank that will oblige. I’m all packed and ready to go, and I hear Peter, Paul, and Mary’s “Leaving on a Jet Plane” as I finish some last-minute errands.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at www.bethlgainer.blogspot.com, and her cat Hemi blogs at www.catterchatter.blogspot.com. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Photobucket


Day 4 and Counting

Posted on: July 13th, 2009 by
Comments Disabled

Our travel group met at the agency for our final travel meeting. Jane is super-organized with the zillion of forms needed. She gave each of us our own form-carrying packet with neatly labeled, color-coded folders. Even a form-challenged person like me was able to navigate it!

We even had our itinerary for each day we are in China!! Now that’s organization. I highly recommend Family Resource Center for its wonderful, ethical service. I don’t think the agency is taking applications for Chinese adoptions, due to the massive slowdown of Chinese adoption. However, its domestic adoption program is going strong.

Anyway, I felt so much better after the meeting. Much more reassured, thanks to Jane’s expertise and organization. And I’m so glad she and Tom (our translator) will be with us.

The talk about what restaurants to go to in Hong Kong, to be honest, was not something I wanted to focus on. All I care about is meeting my daughter and showering her with love. I figure that it is not rocket science to find a quality restaurant in Hong Kong without any guidance whatsoever.

The highlight of the meeting is when Jane told us that the babies will be brought to our hotel rooms the next evening around 6:30 p.m., shortly after our plane lands in Nanchang. My heart filled with joy at the thought of meeting her one-on-one so quickly after getting off the plane. And I felt gratitude that the orphanage was willing to make this transition so easy for us by bringing the babies right to our hotel room!!

We are very lucky.

Our first night there we will be in Hong Kong. I plan to sightsee early and have an early dinner at a nice restaurant I will find myself. Do they have an early bird special in Hong Kong? LOL Anyway, my goal is to go to bed early in the evening, so I can get a really good night’s sleep, as the next day will be quite busy and I want to be able to save as much energy as I can for my daughter.

My goal is R&R in Hong Kong and enjoying my last night of true solitude. Because the next day, my life as I know it will change forever.

I love the saying, “It’s not the destination that counts; it’s the journey.” I live by that mantra. But in this case, it’s the journey and destination that count.

And I’m going to savor every moment of it.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about medical advocacy at http://www.bethlgainer.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Photobucket