Shaken, Not Stirred: The Path-Port of Dread

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girl1

Life is cray cray here.

I haven’t written because things are changing so quickly. There has been no time to process and disseminate one issue before another arises. So please, forgive the length of this post as I try to catch up here.

When last we left our cancer-ridden heroine, I was contemplating the meaning of pain in the aftermath of my first lumpectomy. While boob-life has not been easy since, I’m happy to say that remains my most pain-ridden moment to date.

Every surgery/procedure has an epilogue called The Pathology Report. I’m learning quickly that the Path-Port is really the next-steps Bible for cancer, more so than any other lab report to come out of treatments, because it’s dealing with Bob & the Bobettes. The doctor cuts them out of me and the white-coated folks take over, aiming their microscopes and stains on B&B to learn more about these invaders. I like to think of the Path-Port as an alien autopsy, Hangar 51-style.

So the Path-Port from the first lumpectomy came in right after my last post, and it wasn’t good. Remember those margins I talked about? The doctors want clear (cancer-free) areas around the tumors that they cut out. Well, my margins were not clear and I needed to go in again. In fact my margins showed more small Bobettes that weren’t showing anywhere in all of the other tests and scans I’d had to that moment.

And this very point, that I had things growing in my boob that were not easily found, led to the second revelation of the now Dreaded Path-Port. If I had so many small satellite malignant tumors lurking and growing in the breast, it was still possible for one or more of them to spread to other parts of my body. These would still be too small to track (needle in a haystack-style) which would make them even more dangerous in the future. The only real option for ensuring that I would not have a problem with these potential “colonists” (my wonderful doctor’s word, not mine) would be to have chemotherapy.

Chemo is a blow. While I completely understood and agreed with the problem and solution, Stephen and I reeled with the news.

Chemo is what sick people get. Really sick people. Emotionally, I still hadn’t absorbed that I was really sick. I felt good, I couldn’t feel lumps and I was told and I believe (still) that I will be cured. So how could I be considered sick, with something as major, as deadly, as cancer?

And if I wasn’t really sick, there was nothing for me to be afraid of. That’s right folks, I had not felt any real fear during any of this. I had yet to be afraid.

Chemo stripped away my emotional innocence, and my arrogance, because I was now afraid. Very afraid.

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Still my fear wasn’t coming from a fear of dying—they keep saying I will be fine­. My fear is of becoming so sick that I actually would feel like I had cancer. To me that’s the main side effect of chemotherapy—feeling like big crap. Big Crap. BIG, BIG CRAP.

(Not doing chemo when it was recommended was never an option. My maternal grandmother, my only female relative to have breast cancer, died from it because she opted NOT to have chemo or radiation after her mastectomy. She died two years later when it spread to her brain. Not pretty.)

On Sept. 2, Stephen, Samantha and I were back at the Aspen Surgery Center having a second lumpectomy, knowing that chemotherapy and radiation would be my protocol after. This surgery was much simpler, because the only good news from the Path-Port was that my two sentinel lymph nodes—which act as the primary conduit to spreading cancer throughout the body—were clean. So we didn’t need to take more lymph nodes, only go into the breast again for the margins. And I didn’t need to become the Borg again, because we weren’t working with a large main tumor, but with small Bobettes. No wires, no dyes, woohoo!!

I flew through that second surgery, and landed back at work and active the following week, thinking all was good. Yep. I was done with surgery. No worries at all. They got the Bobettes out of me. In fact, Dr. B basically performed a partial mastectomy this time to ensure that she had clear margins. (Stephen remembers her saying that she took a big chunk out of me this time because she didn’t want me on her table again—which we found very amusing and reassuring. None of us wanted me on her table again either.)

Samantha, Stephen and I attended Chemo School. Yes, that is what it’s called. We were told I’d be on a four three-week cycles of TC. TC is the cocktail they chose for me. I would have many other things to help me survive the chemo, like anti-nausea meds, steroids, Neulasta (to increase my white cell count to help fight of nasty bugs) and more. While the TC guarantees me losing my hair, it’s a good all-around chemo for us to use as a proactive measure. Twelve weeks and I should be able to work through most of those days.

We scheduled the start in early October, after the Simi Valley Relay for Life on Oct. 1 and 2, for which I had taken over as team captain for a friend who wouldn’t be there for the event. We were set and I was starting to do my research into surviving and thriving during chemo and using cold caps to save my hair. (More on that in a later post.) I was intent that I would be the best, most functional chemo patient possible.

I’d forgotten about the second Path-Port. Completely, totally forgotten. I was so focused on our next steps and planning as much as I could that when Dr. B called me last Thursday, I figured it was just a follow up.

Instead I found myself shaking and crying in an empty office with a dear, dear co-worker holding my hand while Dr. B went over Path-Port: The Sequel.

My margins were not clear. They found more microscopic tumors and cancer cells, and some slightly larger ones. This time I would need a mastectomy. They would need to take my breast. Take. My. Breast.

I couldn’t breathe. Here I thought I’d gotten around needing to lose my breast and two surgeries later it was bye-bye boob.

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It’s a little hard to put solid words to such strong emotions, but I’m going to try and ask you to bear with me in this. And do know that I’m past needing reassurance about my womanhood, identity, usefulness of my boobs and all of those other things we hope will sound reassuring. I am okay at this point, but I had to process this all first, and that’s what you get here—my process, and it’s intimate.

(WARNING: THIS IS INTIMATE. IF THAT WILL BOTHER YOU OR IF YOU THINK YOU WILL KNOW ME BETTER THAN YOU WANT TO, THEN DON’T READ. BUT I PROMISED MYSELF TO BE HONEST HERE, SO…)

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For some women, from what I’ve been told, their boobs are not necessarily an appreciated portion of their sexuality. (Yes, I’m finally venturing into the world of sex here.) That’s not the case for me. I have always appreciated the sensations that come with happy boobs. (My daughter is now running around in circles, clamping hands over her ears and screaming, “Stop talking now!” Okay, Dear. Enough said.) There is a very sad part of me that says losing one or both of my boobs is like a lower-version of castration. I am without those sensations forever more. That’s a loss. A very personal loss. One that I have NEVER heard anyone put words to. And I think we don’t talk about it because the bigger concern is living, and with the close second concern possibly being gracious, well-mannered ladies in the process. Obviously I agree with the first part (I am now afraid that I will die, just in case you were wondering when that emotion was going to final arrive) or I would not be moving forward. As for the second, judge me as you will.

But, I certainly don’t have to like it.

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The other change that comes with Path-Port: Part Deux is with my chemo. Now that we’re seriously concerned because we really don’t know what the hell is happening in my boob, we need to get more aggressive with my chemo. What was 12 weeks total of TC will now likely become 8 weeks of AC (which I’m told could make me fetal-curl-crying-for-mommy) followed by 12 weeks of T. All of these acronyms and the order and combinations in which they appear are for specific chemo drugs. But I really hate science and I’m getting tired of my forced indoctrination, so I’ll let the very curious research these solo. It’s all very searchable on the Net.

Wrapping an overly long update here, I’ll say that my surgery is scheduled for next week. Chemo will start 3-4 weeks after. And radiation is still on the table. I will post later about reconstruction and options and what they all mean, but for now me, my family/friends and my doctors are committed to and confident with the approach of cutting the damn cancer out of me and poisoning what’s left. And at the end of it all, I will be okay. They still say this. I will live. I will thrive and I’ll have some perky new boobs to go with my renewed life. Amen.

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Shaken, Not Stirred: FrankenBoob

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Margaritas

I took the week off. Sitting around reading trash mags and sipping margaritas is hard, and you should all be way jealous.

I’m lying.

Last Monday was L-Day. Lumpectomy Day. The day that Bob the Tumor (that’s my husband’s name for it and don’t ask me why) got evicted from my right boob.

I keep hearing that I’m strong, and while I appreciate the props so much (encouragement is everything right now), honestly this isn’t about strength. I have no other choice. Strength is the fortitude that comes from choosing to do something hard in the face of other choices. The only choices I’ve got right now are to live or die. Yes, my reality is that melodramatic. Fortunately living means receiving the tortures treatments my doctors tell me will absolutely cure this cancer. And since I have no intention of leaving my husband and daughter alone together so they can bloodily battle their way through the remainder of her teen and college years, life is my only choice. I don’t think that makes me strong.

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This is especially true when I think back to the two moments over the last month when I wanted to fetal curl and check out of everything. (I’m warning you now that I’m not holding back on some of this, so if you’re squeamish or modest, skip down to the paragraph that says “Safe to Read.”)

I’m a pretty savvy and connected gal. It’s part of my job, but I also just really like most people. So even though I already had a solid list of no fewer than a dozen gals–and one guy–who have lived through breast cancer, not one of these survivors ever talked to me about the pain and discomfort involved with their protocols before I myself was diagnosed, and almost no one raised his or her hand after I joined their club. (Two exceptions really helped prepare me for some of this and I’m grateful to their honesty.)

Why are we silent about this? We women share endlessly about the pain of childbirth and the body aches from working out and getting old. We proudly prattle on about surviving our babies’ attempts to suck the nips right off of our bodies when nursing or about the toddler who, in the throws of a tantrum, gave us a black eye with their elbow. We display the Honor Badges awarded from our cramps, headaches and stubbed toes without hesitation. But not this. We do a poor job of sharing what is done to us during cancer treatments.

I’ve had two biopsies now. The first was a breeze. Seriously. I was more disturbed by the description of what would happen than by the actual procedure. So I admit to feeling more than a little arrogant and blasé when I was told I needed to have a second biopsy a week later.

For the uninitiated, a biopsy is the surgical extraction of what is believed to be part of a tumor. The resulting “stuff” is brought to the lab where those white-coated folks do all sorts of tests to determine if said “stuff” is really a murdering mass of out-of-control cells. Benign means okey-dokey. Malignant means life will never be quite so full of unicorns and rainbows again.

In my first biopsy, the lidocaine (numbing drug) was injected high on my boob, a scalpel cut a small slit into my boob and the small suction or grabbing tool (I did not want to see what it looked like) was threaded down to the tumor where it then grabbed a small amount of “stuff.” It was fast and I sailed through it.

My second biopsy, which came after the breast MRI was done, was more involved. The MRI showed two small off-shoot tumors, like branches from a bush. The bush was Bob the Tumor, and we already knew about it. The doctor needed information on these two off-shoots.

Going through that second biopsy meant the cut needed to be on the edge of my nipple, what we properly call the areole.

Can anyone tell me how many nerves are present in a typical female nipple? I’m not a doctor, but in my official, anecdotal, pain-substantiated medical opinion, I would say a shit-load of nerves are present in the typical female nipple. And when those first two shots of lidocaine did not numb my boob fast enough–which I only knew was the case when the scalpel started its task–let’s just say that all life in the exam room paused until my screaming ended.

Before anyone jumps on my doctor or tech, please know they were wonderful. As soon as I said stop, I’m feeling this, they did. But then I was given more lidocaine, through another injection, in the spot right next to the first, and it hurt. A lot. And I started crying. Softly, because the last thing I wanted to do was to become hysterical while a scalpel was working exactly one-half inch from my nipple.

I did warn you that I would be pretty blunt here, remember?

When I hinted at my angst over the biopsy experience, suddenly a bunch of my buds raised their hands and said, hell yeah, a biopsy can really hurt.

My other breaking point happened when I became a member of the Borg Collective.

Yes, I’m a true Trekkie, worshipping the ground walked by every Starfleet officer over the last 50 years. And I know now that whoever created the Borgs in The Next Generation series absolutely, positively, had some experience as a cancer patient. It’s the only explanation to credit the horrific imagination needed to create the Borg.

During both biopsies, two small markers were inserted into the tumors. These titanium chips (yes, there were all sorts of jokes handed around about chipping my boob, thank you very much) would allow the doctor to find and remove Bob and the Bobettes. But that’s only part of the process. The chips point to the tumors, but it’s the WIRE that outlines the tumors’ perimeters, to direct the doctor where to cut.

And how do we get a wire around the tumor in my boob, you ask?

I started my day having blue dye injected into my boob to help the doctor isolate my lymph nodes. That happened in the nuclear medicine department at the hospital, a more frightening sounding place there is not, except for maybe the morgue? Anyway, that was not a bad experience.

Next stop was the Breast Center where I was once again smooshed in the mammography machine. Remember this is my Poor Boob that has already be stuck and cut so much and now it returned to the scene of the first assault to be stuck and cut again. This time, instead of my boob being smooshed by two solid clear acrylic plates while the mammography is doing its work, the top plate had about a 2″ x 3″ cut out, which was centered to where the wires would be inserted. I was contorted in a not-quite sitting, not-quite standing 45-degree angle and told NOT TO MOVE. AT ALL. FOR TEN MINUTES, AT LEAST. I grasped the base and length of the mammography machine like it was the cliff I was trying not to fall from, and started to talk myself into not moving. At all. For ten minutes, at least.

I try to not look when unpleasant things are being done to my body. I’ve had at least two gallons worth of blood removed from my veins over the years of infertility treatments and never once did I see the needle go into my arm. As long as I can’t see it, it’s not real. Well, the contorted position I was in, with my Poor Boob smooshed between the plates, left me unable to avert my eyes. So when my radiologist stuck two hat-pin type needles into my boob through that 2″ x 3″ window, I saw it all. Again, lidocaine was used, and the position was just enough away from the last biopsy that my nipple didn’t factor into this process. But, I saw it all. And I started crying. And I couldn’t stop because it was so scary and I wanted to move away from the machine and those hands that kept sticking sharps things into my Poor Boob, but I couldn’t because now my boob was pretty much pinned to the machine, looking ironically like that frog I pinned to a wax sheet in seventh grade for dissection. So I kept crying, without moving, waiting for ten minutes, at least.

And then came the wire. About 20″ long and super thin, it was threaded down one hat-pin needle and up through the other, just like the quilts I make. Sort of. And the doctor and tech are happily praising themselves for their perfect placement of the wire, which meant they would not have to try again, and I’m still crying, not bothering to fake bravery anymore, but wondering if all of the congestion I’m creating would affect the anesthesia that I was about to go under.

When they released my boob, I saw two long ends of wire, sticking up from my breast, like ultra-thin rebar. The tech taped the ends down, and between the blue dye, the wires and the cuts, I was now Borg, and resistance was futile.

Safe to Read: I was wheeled into the surgical center where I tried not to reveal my crying to my family, because I didn’t want to worry them. (Why do we say that? Of course they worry. That’s the price of love. But still, protecting them is a priority.) But I possess one of those faces that shows every tear shed, and not in a pretty way. They knew. And Sam started crying and I felt so bad for adding more weight to her young, heavy heart. Then they gave me happy drugs and I swear I remember saying, “Oh that feels nice,” and then I was awake in recovery.

Okay, so we’re a week past and I can update a couple of things. The good news, the great news is that my lymph nodes are clear. Clean. No cancer. Nada. Zip. Zilch. That means that it did not spread yet. The not-so-good news is that my margins, the perimeter of Bob the Tumor, still showed cancer cells. It was starting to move past Bob and now I have to go in again, to get bigger margins. (For my quilt-peeps, margins are seam allowances. We need bigger seam allowances here.) There’s no way for the surgeon to know that the margins are adequate until they test them, so about 20-25 percent of lumpectomies require a revisit. But, I don’t have to become Borg again, so I can do this.

Photo by Moviestore/REX/Shutterstock (1631700a) Young Frankenstein, Peter Boyle, Gene Wilder Film and Television

Photo by Moviestore/REX/Shutterstock (1631700a)
Young Frankenstein, Peter Boyle, Gene Wilder
Film and Television

That I heal rapidly from surgery remains true. By Wednesday I was bouncing off my bedroom walls. I’m back at work this week, but go in Friday for the second round. I still don’t know positively about chemo, but radiation is a definite. None of that happens until FrankenBoob heals from all of these cuts. Yep. That’s her new name, FrankenBoob. You’d understand if I was willing to show you my stitches, but I’m not. You’ll just have to trust me here.

And once again, thank you everyone who has reached out to us, sent us notes and cards, fed us, drove us, called us, texted us, hugged us, and just generally stuck around in some way. It means the world and it’s needed. We will not get through this alone.

Shaken, Not Stirred: A Boob and A Duck Walk Into A Bar…

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BreastJokes

One of the hardest things about being a breast cancer patient is, in my case, that I don’t feel sick.

Not at all.

I can’t even feel this tumor in my boob.

Not at all.

I can see it on all of the scans, just like everyone else can. But I don’t feel it. It makes accepting the needles in the nipple thing for my latest biopsy so emotionally difficult. (I’m so sorry, but there’s no easy way to write around that one. Besides, what’s a shared grimace between friends?) Makes me question if the cure inflicts more damage than the disease? Maybe so, since I don’t feel sick.

I’m going over my surgery instructions and check-in the other day. The girl on the phone sounds young, and serious. Slightly Evil Jake raises her head because that level of serious just won’t do.

“Okay, Mrs. Finch. I’m going to ask you about your medical history. Any heart problems?” (And she goes down a long list of related heart conditions.)

“No. None.”

“Okay, problems with strokes?” (Again, a long list of related stroke issues.)

“No. None.”

“Okay. That’s good. Anything with your digestive system? Ulcers, stomach problems or other things?”

“No. None.”

“Great. Okay, any artificial devices in your body: implants, dentures, hearing aids or more?”

“No. None.”

“Good. Any other health issues we should know about?”

“You mean besides my breast cancer? Nope. I’m perfectly healthy.”

Crickets…

“That’s a joke. It’s okay to laugh, Sweetie.”

“Oh, good,” she says. “I wasn’t sure…”

Too funny!

And as I try always to look on the bright side of things, one of my Besties texts me the other night and wants to know if I want her to bring me matzo ball soup, chicken cheese soup, beef vegetable soup, spinach sausage soup, or her piece de resistance, GUMBO (this Bestie hails from Louisiana and makes The. Best. Gumbo. EVER!)?

Well, I still harbor delusions of thinness, even with all of this crap going on.

“OMG, Woman! I want to lose weight, not gain!” I text her.

“Okay, then, minestrone,” she taps back.

I then share with her my new adapted favorite quote, based on my all-time favorite line from the Best Chick Flick In The World.

“Darling. I’m only one cancer treatment away from my goal weight.”

(Anybody guess the movie? Anyone? Bueller?)

Do you know that this Bestie has never SEEN this movie? Not acceptable. Our friendship will not survive this absence of Girl Knowledge.

We negotiate and I end up getting her to agree to visit while I’m laid up next week so we can watch this one together. Much better than sedentary calorie ingestion, at least as far as my scale is concerned. But I’ll probably still woof down some popcorn. With real butter.

But not all moments lately are lighthearted. Can someone please tell me why it is that people feel inclined to say stupid, cruel things rather than just say, “I’m sorry for what you’re going through.”?

I don’t think these people mean to be mean. And mostly I’m not speaking about myself. Almost everyone I’ve encountered has been incredibly kind and considerate to our current conditions. But both Stephen and Samantha have had “friends” say a version of the following in the last week:

“I know someone who had that and they died.”

WTF? In what culture is that ever an acceptable form of verbal comfort?

On my end, I have had a couple of people look at me like I was already dead, my version of Jacob Marley standing before them, chains and bandages waving eerily. I find myself reassuring THEM that no, I’m not going to die from this, as long as I get treated as planned. And they still look at me like I’m a ghost. Sometimes I even catch them looking at my boobs like they just vanished before their eyes.

I just don’t get it. Yep, I have cancer. I’m still alive, and will be because I’m blessed to live in a time where medicine can remove all of this cancer from my being. Most days, I worry more about dying ironically in a car accident or bathroom fall and Stephen being left to decide on the epitaph for my tombstone:

“Her boobs couldn’t get the job done, so her car took over.”

A boob and a duck walk into a bar and the bartender says….

Shaken, Not Stirred: Walk of Shame

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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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bigstock-Women-in-pink-outfits-joining--129432845.jpg

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

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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

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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!

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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!