Here’s the Plan, Man

Dr. McAuliffe called yesterday morning to tell me about the conversation at the multi-disciplinary oncology conference. There were four medical oncologists there (including the head of breast oncology), and my plastic surgeon who hopefully does not hate me.

First, they discussed the origin of the cancer, whether they thought this was a new cancer or a recurrence. Because there was so much DCIS in my breast in 2013, they suspect this is a progression – as in, one of those cells did stick around and progress into invasive ductal carcinoma. But, to know that for sure, they would expect to see some current DCIS along with the IDC. So, the jury is still out there. Regardless, this doesn’t make much of a difference for treatment.

They unanimously agree that my treatment in 2013 was appropriate – the academic standard is that mastectomy after DCIS is considered “cured” – there is no need for further treatment. I’m glad she asked them this – it makes me feel better that no one missed anything back then.

They unanimously agreed that I should have surgery first (which will be scheduled to occur within the next 30 days – I already have an appt with the plastic surgeon on Tuesday). McAuliffe will do the surgery; Gimbel will either make recommendations after seeing me, or he will be in the surgery with her. I will be in and out of the hospital that day with lifting restrictions for a few weeks after. Although the tumor is just under the skin, she is going to make a wide cut around it and tunnel down to the chest wall to ensure there is no remnant of it whatsoever. Gimbel will be able to help her determine how to do that and keep it as smooth as possible so I don’t look completely asymmetric.

They unanimously agreed not to touch any lymph nodes – there’s too much risk of problems developing from that. I will have radiation after the surgery and also start the endocrine therapy (hormone pills). The radiation will take care of anything that could be in my lymph nodes. The tumor I have is showing up so brightly on the PET scan and there is no evidence of it in the lymph nodes, so they are confident the lymph nodes are fine. And, if something is hiding, radiation should take care of it.

After she removes the whole tumor, they will send it for genomic analysis. They don’t want to do that now because the current pieces they have from biopsy were basically random pieces that were easy to grab at the moment. Once they have the whole tumor, they can choose a really good piece (whatever that means) to send for genomic testing. The testing will let them know if I need chemo and what chemo would be most effective. Apparently, the conference had a lot of conversation about this because of my BRCA status. If it does come back that I will need chemo, it will likely be aggressive – a platin and a taxol.

As for my abdomen – they unanimously were like “what the hell is that” – I mean, I don’t think that’s exactly what they said, but she said they were all pretty confused by it. The fact that she couldn’t even feel anything when she touched it on Thursday, it didn’t look any different than my other skin — they’re baffled. Still, they want it biopsied. I guess it’ll be a fun surprise for everyone to find out what it is!

Our conversation finished with a to-do list for me:

• send my jury duty notice to her nurse to get released from end-of-month jury duty (looks like I’m probably not going to make that)
• email my rheumatologist to get a clearance on my meds for surgery

Again, I ask, why must I have to do things when I have cancer, but alas, if she’s going to do surgery, I suppose this is the least I can do to help.

Missed My Calling

Today I learned 3 things:

• I’m right basically all the time.
• My preventative mastectomy was a huge waste of time, money, and a lot of people’s energy.
• And, I should’ve been an oncologist.

This morning, my husband and I met with Dr. McAuliffe to find out prognosis and treatment plan. The cancer is stage 2A (not terrible; totally treatable). After looking at scans and pathology from 2013, she is pretty certain that this is the same cancer (just as I suspected) I had then — as many DCIS cells as possible were removed during my mastectomy. But the doctors always said they can never remove every single cell. I like to make this analogy – it’s like a carton of ice cream. Even after you scoop out all of the ice cream, there’s still a little bit of ice cream residue that remains in the carton. Same thing here – they made a cut in the bottom of my breast, scooped out all of the breast tissue, but there was always going to be a little bit of residual tissue remaining. The chances of that tissue becoming cancerous are practically nil, but hey, they took a chance on me won the jackpot! It only takes one rogue mother fucker; this one hung around, grew, and now it’s invasive and is spreading throughout my breast. I suppose, luckily, I felt it before it did too much damage; it is not in my lymph nodes or elsewhere in my body. Still, we are going to treat it aggressively because I am not going through this a third time.

Definitely in my future: surgery to remove the tumor, radiation to kill any other lurking rogues, and hormone therapy (most likely tamoxifen since aromatase inhibitors cause joint pain, and Dr. McAuliffe doesn’t want to wreak havoc on my RA). Chemo is a possibility because of the high Ki-67 (just as I thought).  We talked about doing oncotype testing (yep – thought they might do that) to see if chemo would be required and how effective it would be. She wasn’t quite sure about the order that would make the most sense for these processes – chemo first then surgery? Surgery first then radiation? Put your left leg in, your right leg out? Let’s call the whole fucking thing off. Whatever.

Because my case is complicated (and nearly fucking unheard of) she will present it to the hospital’s multi-disciplinary oncology conference this evening. There will be surgical oncologists, medical oncologists, and my plastic surgeon will attend. Because I’m such an an interesting specimen, these people will all weigh in on the best way to proceed (I have to say, I LOVE this idea – I mean, who wouldn’t? All these brilliantly over-ivied brains getting together to talk about the best way to cure me!!! – I can’t wait to hear what they have to say).

My situation is complicated by a few of factors. My rheumatoid arthritis will likely make some of this harder on my system than it already would be on a typical person.  Also, she would like to remove some axillary lymph nodes to ensure there are no rogue cells in there. But, my anatomy is kind of screwy because of the wack-a-doodle surgery I had in 2013 where they made my stomach into breasts, and it’s unclear if my lymph nodes are where they should be and what lymph drainage pathways I would have if she removed the ones she finds (tbh, I’m making this part up a bit – it was confusing – but I think I’m getting the gist). There is already the risk of causing lymphedema by removing those axillary lymph nodes, so she wants to be cautious with that. They’re going to try to figure all of that out at the conference, and there is some kind of further testing they can subject me to in order to view the drainage pathways (I’m sure it involves dye I’ll get to drink or radiation they’ll inject into my veins while I lay in yet another confining tube listening to persistent banging for at least 45 minutes  – either way, fun!). Dr. McAuliffe is going to call me either this evening or tomorrow with details from the conference.

I tell her I am going to Philadelphia to the Basser Center to meet with their director for a second opinion on July 22. I didn’t get a second opinion in 2013, and I regret that now. Fool me once, cancer twice…. something like that. She looks a bit stunned, but continues our conversation. I’ll have the biopsy of my abdomen next week, I will also meet with medical oncology at some point, she mentions the emotional aspects of this and describes a program where I can see a psychologist in the building who specializes in oncology. Sign me up.

I send a similar version of this post to some friends and family. Their responses are overwhelmingly full of love and support. Some ask me how I’m feeling about all of this, and to be honest, I don’t feel anything. I did feel pretty nervous this morning before the appointment, but Dr. McAuliffe was so caring and thorough, and I think my preliminary research helped me see this as an academic enterprise and keep some emotional distance from it. I diagnosed myself after all – no huge surprises in the exam room today. All I need to do is keep showing up where I’m supposed to be, swallow whatever they tell me to swallow, let them stick me with a few needles, and all of this should be over before I have time to finish my med school applications.

Great Expectations

By the time I was old enough to be a counselor at summer camp (maybe about 17 years old), I had a nickname – B.A. for “Bad Attitude.” Don’t be mistaken – this wasn’t about being a badass or anything remotely cool. This was about being negative, pessimistic, cynical. Even now, 25 or so years later, my friends and family would probably still describe me as “B.A.” although I think in general I am better at showing when I am happy and joyful as well. While I know those who called me B.A. considered it an insult (just one more reason I hated summer camp), I have always been somewhat proud of my natural inclination toward cynicism and skepticism. These are perhaps the world’s best defense mechanisms, for if you expect the least or think the worst is about to happen, you can only be surprised when it doesn’t, right? Because of this, I am happy to say, I am very rarely disappointed. And, I’m always prepared when things don’t go well. My friends comment often how calm I am in a crisis. Well, it’s easy if you’re always mildly expecting one.

So, tomorrow is my appointment with Dr. McAuliffe. What am I expecting? That’s what I’ve been researching and writing about for the last few weeks – trying to figure out what to expect. This morning I had my breast MRI. If that experience is a predictor of anything to happen going forward, I’m in trouble. Five times they had to stick me to get a vein! Those nurses could not have been nicer, but man, it took them almost an hour to get an IV in my arm, and they made a bloody mess to boot (in their defense, I am probably the least hydrated person on earth, and there is only one person I know who ever gets one of my veins the first try for a blood draw – shout out to Ray at UPMC Rheumatology!)

When I got home, I pulled out my 2013 purple envelope from my filing cabinet so I wouldn’t forget to bring it with me to tomorrow’s appointment. There is probably not one single thing in there that I need, but I brought it to all of my appointments then, so it seems like I should do it now, too. I’m just continuing that same journey, right? I guess that’s why I never threw away that purple envelope; maybe I knew I should be prepared in case I needed it again.

The thing is, I actually have a good feeling about tomorrow. I think the doctor is going to give me good news, that this cancer isn’t that bad, and treatment will be pretty easy….. I don’t feel like I’m just telling myself that, keeping my chin up, or trying to be optimistic (because that’s not who I am); I really feel like it’s true. Yet at the same time, there is a tiny gnawing at the pit of my stomach, because I know if I go in there thinking that everything will be fine, it can only be much worse than that.

Tipping point

I’ve reached it. While I sit here holding back tears, I know I’ve reached my tipping point. I also know I am using that term incorrectly, but I don’t care. It feels right to me… I’ve been holding on, standing tall, being strong, all that other bullshit, but now, I am ready to tip over, land right into my bed, and just fucking stay there. Because my son is home from camp, sitting next to me working on a lego set, and my husband won’t be home for another 4 hours, I will have to wait for my literal tip; but inside my body, I can feel inside of my lungs, throat, and shoulders, my anxiety crawling and spreading in cold hard waves.

Let’s review how I got here:

• I found a lump in my breast 34 days ago. There has been a lump in my breast for more than a month.
• Thirty-one days ago, I learned that lump is invasive cancer. For 31 days, I have woken up each morning and gone to sleep each night knowing there is cancer in my body. For 31 days, I have known I have invasive cancer in my body even though I had three surgeries (resulting in years of painful side effects, including menopause at age 36) to ensure this would not happen.
• A week ago today, my husband’s father died from pancreatic cancer. That morning, while my husband was out, I told our son that his Papa had died and held him while he cried. I attended the funeral with my husband, holding his hand as our crying son laid in my lap.
• For the last four days, my husband and I have guided our son through an intensive treatment for encopresis. He was not allowed to leave the bathroom for the first three days, which means I have spent the past three days in a 150sq foot space with an 8yo watching episodes of The Flash while coaching him through bouts of massive diarrhea. This also means my husband and I have not spent any time alone together since returning from his father’s funeral. And it means we are both short-tempered.
• My son will transition back to camp part-time tomorrow and hopefully full-time by Wednesday. I will spend those days worried sick that he will have explosive diarrhea in front of his friends.
• On Thursday, after what will be 37 days, I will finally meet my doctor to discuss the breast cancer. While she has responded to my emails, she has not called, and I suppose she saw no need to see me until she had all of the information from all of the scans. I know she’s a great doctor, but so far, she’s no Dr. Wilson.

Strangely, I think what makes me feel the worst is all of the text messages I get each day from my friends “just checking in” and asking “what can I do to help?” I’m not ungrateful – in fact, I’m incredibly grateful. I feel so loved and am so appreciative that there are so many people who want to make sure that we are ok. I don’t want to tell them to stop – I definitely would rather them keep coming than stop. But at the same time, every time I get a message, it reminds me that there is something wrong. No one sent me texts “just checking in” before I had cancer. Several friends have offered to bring dinner over or start a mealtrain, but despite the fact that we’ve had a death in the family, I’m about to start cancer treatment, and all three of us are suffering emotionally in one way or another, I can’t bring myself to admit that this is something we might need.

Instead, I’m self-soothing. Vodka and cranberry juice with dinner each night; peanut M&Ms, Netflix, and an extra Klonipin as I fall asleep; obsessively kissing my son’s head anytime I’m close enough to him. How has this not kept me from the tipping point? How am I anything but the happiest person on earth?

PET Scan Results (tw: gross pics below)

After waiting what seemed like an eternity, I emailed Dr. McAuliffe on Thursday morning (July 4) to let her know that my PET scan results were not yet in my medical portal. She replied quickly to say that it must’ve been a technical glitch, and she’d have someone in her office publish them the next day (since it was a holiday). Clearly not realizing what I really wanted was the ACTUAL RESULTS, I wrote back to ask if she’d seen them and if she’d share them with me. She did:

Thankfully, no distant metastatic disease. There’s an expected bright spot where the cancer is. There is also a spot on your low abdomen where you had the infected stitch that Dr. Gimbel excised. Radiology wants to biopsy it, just to make sure there’s nothing else going on there. My ofc is working on arranging an appt for that.

Great news – no metastatic disease!

Here are the relevant parts of the actual report that showed up in my portal yesterday morning:

There are postsurgical changes status post bilateral mastectomies 

with TRAM flap reconstruction. Lobulated enhancing 2.2 x 1.8 cm 
mass 
in the upper outer reconstructed right breast with focal 
FDG 
uptake max SUV 9.2 is compatible with biopsy-proven malignancy. 

In the left anterior pelvic wall, there is subtle nodular 
thickening 
just anterior to the left rectus measuring approximately 

2.6 x 1.7 cm, with suspicious focal FDG uptake max SUV 8.5. 

Clips in the right axilla compatible with prior axillary lymph 

node sampling.

So, let me backtrack about this infected stitch/anterior pelvic wall thing. I’ve gone through all of my prior posts, and I am shocked to see that I did not write about this at all, especially because it was so beyond frustrating that it is exactly the kind of thing I would’ve taken to the keyboard to bitch about profusely. I’ll try to give the short version here.

As we all recall, in January 2013, I had a bilateral mastectomy with abdominal flap reconstruction (muscle-sparing free TRAM on the left, SIEA on the right — ideally the surgeon wanted to do SIEA on both sides, but an individual’s anatomy dictates what they are able to do); this results in a hip-to-hip scar across the entire abdomen. My plastic surgeon, Dr. Gimbel, did a really nice job revising the scar in December of that year so that, over time, it has smoothed out with the rest of my skin, and the color has become quite pale although it will probably always be visible. In October 2017 (almost five years after the initial surgery), I began to notice swelling on the far left side of the scar. I sent him these pictures to show the difference between the left and right side:

 

You can easily see how the left side is dimpled, raised, and inflamed, while the right side scar more easily blends in with the stretch marks on my skin. He suspected this was a “suture site infection or “spitting sutures”; while not uncommon immediately after surgery, 4.5 years later is pretty odd. He prescribed antibiotics. Within a few days, however, these raised areas opened up into large gaping holes (I’ll save you the details of what came out of them — also, this is where I swear I wrote about this already, because I was at a Feminists Rhetorics conference at the time giving a talk on women’s health advocacy, and the irony of having to pack my own wound in a hotel bathroom so that I wouldn’t ooze goo all over my presentation clothing was not lost on me).

I saw Dr. Gimbel twice to have him attempt to fix these wounds in his office; they healed once, opened up again, he fixed them again…. all to no avail. Eventually, he scheduled me for surgery, which I had on December 15, 2017 (almost five years to the day that my DCIS was found via mammogram).

Apparently the surgery was pretty easy. I notice on my calendar that I went to a pretty big work event only two days later, my son was home from school with me for two days later that week, and my husband and I went to see the new Star Wars movie that weekend. I guess I felt fine. Here’s what the pathology from the surgery said:

SKIN AND SOFT TISSUE, LEFT ABDOMINAL WALL, EXCISION:

SKIN AND SUBCUTANEOUS TISSUE WITH SCAR, FOREIGN BODY 
GIANT CELL 
REACTION,CHRONIC INFLAMMATION AND HEMOSIDERIN 
DEPOSITION.

All cultures of the site, however, showed “Rare Pseudomonas aeruginosa,” which to me sounds pretty bad especially because I am immunocompromised due to RA, but he said the site had simply been “smoldering” and should be fine now that he’d removed everything from there and sewed it back up.

I haven’t had a problem with it since…. until now, it lights up on the PET scan. So I start doing some research on “pelvic wall” and “PET scan” to see what could be showing up there. Most of what I found related to peritoneal or some other kind of gynecological cancer. Since this is my biggest fear — way scarier to me than breast cancer — I emailed Dr. McAuliffe immediately to ask if there’s any chance that the abdominal “hot spot” could be peritoneal cancer. Her response was reassuring, if vague:

the area is superficial, right under the skin, not deep enough to be peritoneal ca

Ok, so what is it? – and why do they want to biopsy this little piece of skin on my abdomen if it’s so “superficial?” What gives me a bit of pause, however, is the phrase in the PET report, “subtle nodular thickening.” There is not one thing I read about this that did not scare the shit out of me. For instance:

Essentially all common causes of nodular pleural thickening are malignant (Radiopaedia).

From what I gather, it’s pretty common in people with mesothelioma from asbestos exposure, but can arise from a number of other issues (including breast cancer). This article makes me feel a bit better about it, since it explains that pleural thickening can often be confused with an effusion, which I gather is just a build up of fluid. It might make sense that there would be fluid in that space under the abdominal scar if, perhaps, that area is infected again. Of course, other research I’ve read explains that an effusion can also signal cancer. So, back to biopsy we go.

I’m also still trying to figure out the whole “FDG uptake” and “SUV” thing, but that is more confusing than the other stuff I’ve been able to decipher. Tips are always appreciated!