Shaken, Not Stirred: Update. Finally. Part 2.

Recovering in the hospital from my mastectomy, Samantha and me.

Recovering in the hospital from my mastectomy, Samantha and me.

So I’m home from the double mastectomy. Recuperating pretty well. Dr. B even allowed me to take Sam to the Martina McBride concert a week later in Thousand Oaks. I’d bought the tickets before my diagnosis and it was breaking my heart not to be able to do this with Sam, to sacrifice yet one more thing to my cancer. (I am working on a blog post on just about what cancer has taken from us.) But Dr. B was great and told Steve that if we rented a wheelchair, that it would be good for me to get out. Samantha, who refused to attend the concert with anyone but me (“If you can’t go, I don’t want to go with anyone else!”) was thrilled to be pushing me around. I called up the TO Civic Arts Center and switched our tickets to handicapped. Steve drove us there and back and we enjoyed three hours with one of our favorite performers. It was wonderful and I felt good.

We kept the wheelchair that weekend and used it to attend a funeral, and to participate in the Survivor’s Walk at the Simi Valley Relay for Life.

The starting line at the Simi Valley Relay for Life event. This is the American Cancer Society's main fundraiser.

The starting line at the Simi Valley Relay for Life event. This is the American Cancer Society’s main fundraiser.

In my wheelchair with Sam pushing. She's in her cheer uniform.

In my wheelchair with Sam pushing. She’s in her cheer uniform.

So backing up a moment, (and this is not really a sidebar, but it’s just so painful still to put into words that I will probably sound more glib than intended,) my friend that I wrote about HERE took a bad turn for the worse and was actually in the same hospital as me when I had my surgery. The early morning of the day I was released, Friday, she passed away. She was two floors below me, and I never got to see her. Thankfully, Stephen and Sam did and were able to offer some comfort for her two daughters and husband. Her younger daughter is one of Sam’s oldest and closest friends, and we are close to all of them, spending many wonderful nights sharing dinners with them, or holidays, or having the girls at each other’s home.

Since becoming a mom 15 years ago, I’ve now lost five mom-friends to cancer: four to breast cancer and one to ovarian cancer. It kills me to know the pain these mommies went through knowing they would not be there for their children. That’s our primary job, especially when our kids are still with us, and dependent. And knowing and loving Hannah for as long as I have made her loss the worst, for all of us. She was an amazing woman, whose only concern was about everyone else around her. I don’t expect life to be fair, but I don’t have to like it when it’s not.

What I can’t help but be incredibly proud of is Samantha’s courage in going to see Hannah. Here is a 15-year-old highly sensitive kid watching her own mother go through a life-battle in front of her for weeks, and she wants to go and say goodbye to a woman she rightly considered one of her Other Mothers. I am humbled by her bravery and her selfless concern for Hannah’s daughters and husband. She has only ever thought about them through this, and continues to try to help. Wow. That’s some human being breathing down the hall from me.

So a week later, I’m doing well and trying to take it easy. I was told not to make any large movements with my arms, especially the right side because there were many lymph nodes removed from there. My family and friends are spoiling me rotten, not allowing me to do much. I felt like I was healing. But my drains were still draining and I began taking my pain pills more regularly, which should have been a sign to me that something was not quite right.

Something you need to know about me is that I have an inhuman tolerance to pain. It’s not a good thing. It’s gotten me in much trouble over the years with my miscarriages and ectopic pregnancies. And stories about how I never felt the contractions when we were trying to induce Samantha’s birth (She ended up being an emergency C-section. Yep, I don’t do anything easy.) are legendary around us. The only sign that my pain was increasing was that I was taking my pain meds regularly. I’d go to the doctors and say, yeah, I’m feeling okay. Not taking more than I’m prescribed, and I’m sore, but that’s normal, right?

Wrong.

Three weeks post-op and now I’m having out-of-body experiences where I’m watching myself crying from the pain but not understanding what’s happening. My entire chest was on fire. A case of the hiccups would start me crying from the pain, but then the crying would make it worse. All I could do was sit in my chair and watch TV. If you know me well, you know how weird that is. I couldn’t read, sew, talk to anyone. I was half-stoned from the pain meds, and they were starting to not work. My doctors were on top of me, seeing me several times a week, but again, even though I was FEELING pain, I still didn’t realize that this was not NORMAL. It’s so strange, I know, but that’s what was happening. And without me communicating accurately what my pain levels were, and the absence of a fever (another one of my anti-super powers) they could only assess based on what I was saying. They’d ask me what my pain level was and I’d say 4 or 5. Manageable with drugs. I refused to overtake my meds, but they were being taken on time. Every time. Without fail. And the nights were the worst. I couldn’t stay still in bed and often ended up in my new recliner, sleeping upright.

At three weeks, Dr. H started me on physical therapy to help reduce the swelling with lymphatic massage. Since the drains were still draining, and looked normal, this was a logical response. But I was also struggling with the drains. Big time. They have to be drained and the liquid amounts have to be logged. When the output reduces to a certain amount, they can be removed, but I was nowhere near that point, so there were beginning to be other signs of trouble. I had now been on antibiotics for 8 weeks because of all of the procedures. It was likely this single fact was what kept my symptoms at bay, and me healthier than I should have been.

This is what the drains look like and the chart we kept to log everything.

This is what the drains look like and the chart we kept to log everything.

The day after my first PT, I had two appointments: Dr. S in the morning to go over the latest Path-Port and future chemo, and Dr. H in the afternoon. It was that morning that Stephen realized that something was very wrong with me, probably because I scared to shit out of him by saying that I now understood why some people would rather die than continue to live with chronic pain.

At Dr. S, we found out that at last count, there were 25 tumors removed from my right breast. That’s what’s called multifocal cancer and that’s why I was elevated to a Stage 2 diagnosis. By the time we got to Dr. H in the early afternoon I was a mess! I couldn’t stop crying from the pain and the very short wait was filled with me sobbing and Stephen looking more scared and helpless.

I remember Dr. H coming in. She’s a very gentle, soft-spoken woman, younger than me and filled with kindness and skill. She sat in front of me, gently took both my hands in each of hers and said, “Jake, this is not normal. There is something wrong.” She then looked at my right drain and discovered that it had actually come out of me, which had to have just happened within the last hour or two before the appointment. And the liquid in the drain bulb, it did not look good. It looked infected.

“I think the problem is with the expanders and since you’ve already decided to have the flap reconstruction, I’d like to remove them,” she said, again, very gently.

“As long as I’m asleep for it,” I answered, thinking that at least if I was knocked out I wouldn’t feel this pain any longer.

She chuckled a little. “Of course you will be. You’re going back into the hospital. I need to schedule surgery for tonight and you need to go right over there to get checked in. But we will fix this.”

It was Thursday. Samantha was still at school. I was relieved that we were doing something and so was Stephen but we were scared. I called Samantha’s counselor, a good friend of mine, and an amazing support for Sam for many weeks now, and asked her if she or someone else could get Sam and bring her to the hospital for us, with as little drama as possible. She immediately said she would do it as soon as she picked up her preschooler and we met at Simi Valley Hospital. One of my best buds, Vicki, asked if we wanted her there. I don’t know what she had to drop to come, but I did want her and she did come and so did another of my best buds, Karen, who came by right from work. I had my tribe around me again, for the second time in three weeks.

I was in so much pain that even the difficult IV insertion didn’t bother me. I could only lie there, waiting for sleep. Less than two hours later, I was done and in recovery. We were told that I had the start of an infection that was being held off by the antibiotics. I also had torn my right pectoral muscle and the expander was moving around behind it. On the left side Dr. H said there was some weird tissue that my body was forming around the expander. She couldn’t really explain it, but it was obvious that both needed to come out.

When I woke the next morning I was completely without pain. Nada. Zip. I hadn’t realized until I wasn’t in pain just how much pain I was in! I went home after two days and life has been good again. Really good. A week later I was finally back at work, after four weeks gone. And that’s where I’m leaving this novel update for now, except to say that I am so grateful for the care that I’m receiving, both personally and medically. I have been so incredibly blessed, and even at the worst, I knew I was not alone.

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Shaken, Not Stirred: Update. Finally. Part 1.

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Oh, it’s been a busy, cray, cray time in and out of the Birdhouse with my happenings. I know I haven’t posted for more than a month, and I beg your pardon for the delay. I’ve given short updates on Facebook, my preferred social media drug, so there will be a little repetition here.

As last said, I had a bilateral (double) mastectomy on Sept. 21. What I didn’t really explain is the chaos surrounding that event, before and after. Once the pathology report (Path-Port) came back from my second lumpectomy showing that this damn cancer was deeper than any of us thought, we volleyed the options back and forth with my doctors and decided to turn first to aggressive chemo, much upped in type and time than we had originally planned.

(WARNING: Graphic medical info to follow…)

I was shopping online for knitted caps and turbans when I got the call on the morning of Sept. 16 that my surgeon was VERY concerned about the site of the second lumpectomy. See, it wasn’t healing. She had not inserted a drain into this one, for which I was initially very grateful. But my Poor Boob would not stop building up fluid. With the absence of a drain to suck out and receive the fluids, I ended up in my surgeon’s office several times so she could drain me there. With a huge honking needle. In my Poor Boob. Which was numb, but still…. (Are you gritting your teeth yet, because I am!)

The lack of healing was probably a factor of the cancer itself impeding the healing, we were told. If we continued to wait for Poor Boob to heal to start chemo, we could be waiting for weeks, and that would not be good. At. All. So I got scheduled for the mastectomy the next week. We were floored. Again.

I can’t tell you how hard it is to gently and firmly turn your emotions and prayers to one frightening treatment direction only to have to switch direction for urgent reasons. As a patient, I want to be calm and confident. I want my stress levels to be as low as possible, because this kind of stress is so damaging for the body. But sudden changes create fear and worry, and more so for my husband and kid. Poor Samantha has been reeling throughout this whole experience with the many changes in my status and diagnosis. Stephen has been more stalwart, but I can see the ravages of stress about him as well.

So surgery involved three surgeons: Dr. B would perform the mastectomy, Dr. TB would insert the Port-A-Cath for my future chemo, and Dr. H would do the initial reconstruction work. I was out for eight hours, in the hospital for two days and nights and went home with a couple of drains, this time on both sides. I tolerated everything well and the pain was manageable, I thought.

We were told several interesting things right after the surgery. For those who never met me in real life, I was fairly well-endowed. At a 34DDD bust, there was a lot of flesh to deal with, and this is one of the main reasons why it was so hard to determine the extent of my cancer.  With my dense breast tissue, all of the many types of scans I had could never ascertain exactly how much cancer was happening on my right side. And that’s why I decided to give up my left boob as well. The dense tissue issue is the same for both breasts and forever more, I would never trust a scan on that left breast. A smaller reason was that there was no way I would have reconstructed my right side to a 34DDD again, so a reduction would have been needed anyway. These are the things that we had to consider as we faced this surgery. What I didn’t have time to decide, though, (and this becomes important later) was what KIND of reconstruction I would have down the road, after chemo.

In a nutshell there are three main types: saline implants, silicon implants, and tissue reconstruction that involves using my fat (from my tummy) to build a “breast.” There are several versions of this, but it’s most commonly called the “flap.” When done successfully, it ensures that you have no foreign materials in your body, and is more natural, but what I would need to do would involve several surgeries, one of which would be major and leave me in the ICU for five nights. So this was a big commitment in contrast to the implants, which is usually a one or two surgery deal.

Because I was still researching, Dr. B implanted expanders into my chest, behind my pectoral muscles, which would help gradually stretch the skin over time to later accommodate implants, if I went in that direction. If I went for the flap, well it wasn’t going to hurt having them. They would just come out when the time was right.

We were told after the surgery that after years of hauling around 34DDDs–which weighed about 8 pounds together, ahem–that my pectoral muscles were deliciously well-developed and that should help hold the expanders in place. We were also reassured that having the double mastectomy was a good idea. When the path-port from this surgery came back, it was all good news: NO AFFECTED LYMPH NODES, CLEAR MARGINS ON THE RIGHT SIDE FINALLY AND NO CANCER AT ALL IN THE LEFT BOOB! Now all I needed to do was heal so I could start chemo, about a 4-week process.

TO BE CONTINUED TOMORROW BECAUSE THIS IS JUST TOO DARN LONG TO POST ALL AT ONCE.

Shaken, Not Stirred: The Path-Port of Dread

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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

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…

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

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?

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.