Shaken, Not Stirred: Walk of Shame

Breast Cancer Believe Hope Woman Illness Concept

Sometimes a second opinion is not a good thing.

Sometimes it adds more layers of confusion and uncertainty to existing chaos.

I have two doctors, in two cities, who are both receiving the labs and reports. I adore them both and one actually referred me to the other years ago when Sam was born. My primary GP has been heading all of this boob stuff, and has been quick and decisive. So far, we’re good with everything and the lumpectomy is scheduled for Monday. But my other doctor, my gynecologist, called the other day, and while he is NOT countering the findings or approach given to me, he asked about the lumpectomy and reconstruction from it? He wanted me to have a second opinion from one of his trusted colleagues, to ask about simultaneous reconstruction.

I thought this lumpectomy would be so small that there would be no need to fix anything now or later. I thought it would be simple. But when your beloved doctor begs you to get that second opinion, you do, because you know he has your best interests at heart, proven over many years of grieving with him and having him save my life a few times.

Yesterday I had a consult with his recommended breast surgeon. We’ll call him Dr. SK. Dr. SK is skilled and competent and he was mostly caring. He knew that we were there for a second opinion and asked if we were interested in his take. Of course, we said. That’s why we’re here. He got the results of my MRI (from Monday) before my other surgeon, because we were in there. He also got that last lab test we were waiting for. HER2 negative is what we wanted, so we’re in a good place there. That means that while chemo is still on the table, it’s not as automatic a concern.

But my MRI shows two small, very small, tumors shooting off of the main one. Next thing I know, I’m scheduled for ANOTHER needle biopsy  Thursday, a follow up appointment with Dr. SK on Tuesday and surgery on Sept. 2, even though I’m already scheduled for a lumpectomy on Monday with my primary surgeon. Then he autographed his book for me (I swear this is true) and sent us on our way, completely confident that we would return to him next week. (Did I also mention that he had smelling salts taped to the back of every door in the office? Kinda creepy…)

We left and I was reeling with too much input. I also felt the need for a shower, because I had just cheated on my surgeon, Dr. B, who I like and trust very much.

Yes, these two doctors approach the lumpectomy differently, though both will remove it. While I was attracted to the process Dr. SK outlined, I don’t like being sold hard—and we were—and I don’t like having another doctor’s expertise disrespected. (No nothing overt was said to that thought, just tone and ‘tude.) This is where my Super Power skills of people reading, honed expertly from years of shoveling BS through my reporter’s brain, comes in. The alarms in my head were blaring from Dr. SK!

It took me several hours of soul-searching, bitching, moaning, analyzing, identifying my feeling and making panicked phone calls to my beloved Dr. D. to decide that I was in good hands where I was, with Dr. B.

Dr. B. called this morning as she now has my MRI. Besides the two small tumors that she also sees (and I don’t need a needle biopsy for those—she’s taking them out regardless), she said that there is “enhanced activity” in my breasts. I love the descriptors used here. I hear enhanced activity and think there’s a party going on in there. But the reality is even better, ahem. Because I have “young breasts” (who’s my new best friend now, huh, huh???) my hormones make my breasts active. The activity could reflect more tumors birthing in there. Or it could just be the norm for my luscious, young breasts. (Luscious wasn’t one of her medical terms, but it should be.)

I sit here now waiting for an enhanced ultrasound to look at my enhanced and active breasts.

Flash forward several hours: I am sore. My boobs have been prodded to the extreme, all in the name of making sure there’s nothing bad going on in there, you know, besides the breast cancer we already know about. To the point, I still need the needle biopsy tomorrow, but for another area, and more as a precaution than anything. They are taking me and my boobs very seriously, and I appreciate that. I’m still scheduled for my lumpectomy on Monday, but there’s a small possibility that it could be delayed a day or two as we wait for more test results.

My takeaway from all of this?

  • Nothing is ever simple.
  • Doctors are subject to the same human personality vices as the rest of us mere mortals, including hubris, inconsideration, manipulation and arrogance.
  • When you find someone you trust in your mind and your soul, stay with them forever.
  • The medical industry is a business, too often first, and as such breeds competition and hard sales techniques because for some doctors, it is about the money and ego. For many others, it’s about the patient.

I know that I’ve attached myself to the patient-first kind of doctors through this. My boobs, and my life, are in great hands.

 

Shaken, Not Stirred: Really?

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The primary word coming into my mind these days is “surreal.” I don’t feel sick and I can’t even feel this tiny tumor that’s causing all of this fuss, so it’s really, really, really (and typically writers don’t like using words like “really” and “very” because there are so many others to choose from) hard to identify with the phrase I keep saying.

I have breast cancer.

Just doesn’t fit.

I have a friend I love completely. For more than three years, I’ve watched her suffer through the most brutal attack of cancer, which, of course, started in her breasts. Every single day, cancer steals from this 40-something-year-old’s lifestyle, family and joy. And yet she retains her grace and her kindness, always looking for the best around her.

She sees my Facebook posts, texts me from out of town, and she wants to know how she can help ME?! ME? Oh my gosh! Can I tell you how embarrassed I was to share my good prognosis with her? I did share, because I didn’t want to add to her worries. Being worried about me when she’s fighting for her life is the kind of person she is.

I’m too humbled to cry.

I don’t feel sick. I can’t even feel this lump. I feel fine. Really.

Then today happened. I made the appointment for my lumpectomy.

I shared about our meeting with the surgical oncologist on Monday afternoon. Tuesday morning we met en masse with the medication oncologist, Dr. S., who will be my hub for the next decade as I’m guided through the medications (ie: Tamoxifen) that will keep my cancer from visiting me again. (I love Dr. S.! Any doctor who offers his first name to me gets an instant fan.)

At this appointment, we got more information about me and this. I’m positive for both hormone markers, which is a good thing as it enables Tamoxifen to be a long-term preventive measure from recurrence.

(BTW, I don’t believe in free lunches; there’s a cost for everything in life. It’s hard for me to be comfortable with the thought of taking this wonder-drug for the next decade with the only side effects being those I’m about to encounter naturally as I quickly approach menopause. I wonder what problem will I be told comes with Tamoxifen in five years time, when our chemists have more data to analyze?)

Tamoxifen aside, I will do what I’m told, which is lumpectomy followed by radiation, and chemo is still possible.

In the course of 24 hours, I’ve said or written these words too many times to count. Every time, I feel like I’m back in my reporter’s brain, reporting facts that are completely separate from my reality. This is someone else who will have to handle these procedures. Not me. I’m fine, remember?

My lumpectomy happens on Aug. 22. I make the arrangements by phone, asking my questions and taking my notes. Then I text Stephen the time and place. And I start crying. Just a little.

I’m at work and I have an incredible amount of support around me. I call one blessed and trusted friend and ask if I can visit for a short while. As I’m walking over to her end of the building, Stephen texts me back. Am I okay? Mostly I answer, because that is the truth. But he gets it. And she gets it. This is becoming real, even if I feel fine.

I’m not scared of the procedure. I swear that’s the truth. I’ve had much worse, trust me. No sane person wants to be cut into, though. For just a second, a milisecond, I feel sorry for myself. Then I think of my dear, sweet friend, who keeps her soul intact when all else is failing in her body. For her, and for all of those others who don’t have a “good prognosis,” I can’t indulge in pity. It’s just not right.

God never promised fair. He doesn’t give perfection. (How boring would that be?) I also don’t believe that God sadistically inflicts pain, at least not since the Old Testament days. I do believe that He receives us, comforts us, offers us alternatives to our earthly challenges. That’s my faith and hope at work and it does help.

Really.

 

Shaken, Not Stirred: I Like My Boobs

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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.