Life (and death) Goes On

Even when you know that cancer is growing in your body, even when you can feel the lump every time you put on your bra or wash under your arm in the shower, life continues to go on. Your alarm goes off in the morning and you get out of bed. You continue to put laundry in the washing machine, to feed the dog, to go through all the minutiae of life. You call Comcast to negotiate a better deal when your wifi bill suddenly goes up $30 a month, and when they won’t cave, you cancel it and sign up for Verizon. You order four pair of sneakers for your son, and when they arrive, you have him try them all on, choose one that fits right, then package them all up again to take to the UPS store. You go to the library to pick up and return books. You do the weed whacking around the fence where the lawn mower doesn’t quite reach and the grass grows so high it begins to look like a meadow. You do all of these things even if you don’t know how bad your cancer is, if you should be using your time more wisely, savoring every minute, making a bucket list, watching and memorizing every move your child makes. You start to wonder, as you crawl along the kitchen floor spraying Raid at an ant infestation, “I have cancer; shouldn’t someone else do this?” and when you get an email that your homeowners insurance company is going to cancel if you don’t cut some branches from a tree overhanging your roof, you think, “but I have cancer; isn’t all forgiven for me?” And then you spend an hour looking for your property deed, searching online for the land survey that shows you don’t own that tree, and emailing the realtor who sold you your house. Because shit just goes on, and someone has to do it, and no one really gives a flying fuck if you have cancer when you’re the one who pays the bills.

My husband’s father passed away; we got the call at 2am on Monday. It was expected. While his pancreatic cancer had been found early five years ago (my husband has the BRCA1 mutation from his mother; neither of us know if his father was tested for a BRCA mutation); he’d been in a lot of pain for the past several months. My husband has been under a lot of stress; when I found the lump in my breast almost a month ago, he was on his way to visit his father. He wanted to turn the car around and come home, but I insisted he not do that. I knew it could be the last time he saw him alive, the last time they got to spend together. And it was. When he returned from that trip, he said to me, “I don’t know how to do this, and I am scared I am going to make a mistake. How do I know when I’m supposed to be there for him or for you?” I told him not to worry; I would tell him where to go and when (as usual). It turns out he didn’t have to make that choice, but I know he would’ve done right by both of us if he had.

So, Monday morning, my husband went to his office for about an hour to clean up some work before we left town, and I went to work getting all the things done:

• told our son about his grandfather’s death; comforted him while he cried
• gave our son breakfast and went through his usual morning routine
• called my parents, and gave my dad a few tasks that I knew would make things easier for us to travel (he took care of getting us hotel rooms and rental car)
• made plane reservations for all of us
• emailed our son’s camp to let him know he wouldn’t be there this week
• contacted the place that boards our dog asking if we could drop him off later that morning
• packed a bag for myself, for our son, and for the dog
• straightened up the house

None of these are out of the ordinary or extraordinary tasks. They are the things you do for your husband when his father dies. But here’s how this cancer business has made them different:

• The very first thing I did at 3:19am after comforting my husband for close to an hour was email the surgical oncologist to ask her to push back the MRI I was supposed to have today, as well as my appt with her if necessary.  The MRI is now scheduled for July 10 and appt with her for July 11.
• Later in the morning, once I’d heard back with these new appointment times, I contacted Dr. Domchek’s nurse navigator to tell her these dates so she could consider them as they plan a date for my trip to Philadelphia
•  I spent all morning obsessively checking my health portal for PET scan results; each time I see a new bruise on my body, I become more convinced the technologist was lying to me.

So, while I am trying to focus on my husband, at least 25% of my brain is focused on me, me, me, fucking cancer, and me.

None of this changed all that much since we have been here in Massachusetts (just over 24hrs). Last night we went to bed pretty quickly after arriving (but not before I spent a good hour reading about and bookmarking studies of misdiagnosed DCIS and continuing to beat myself up for not getting a second opinion in 2013). This morning we went for a walk on the beautiful Plymouth jetty. As we returned to land, my phone rang with a Philadelphia number, and I knew I had to take the call.

It was Dr. Domchek’s nurse navigator calling with a date for my appointment: July 10. But that’s the day of my MRI, I explained (remember? I sent this info to you in an email this morning). I can’t get an earlier MRI appointment – there aren’t any. It doesn’t make sense to reschedule it for a later date and see Dr. Domchek without having the MRI results – she should have the full picture when I go there. Her nurse navigator explains that she only sees patients on Mondays and Wednesdays, but she’ll be on vacation the week of the 15-19. I ask her if she’ll go back to Dr. Domchek and ask for an appt the week after her vacation. She seems as frustrated by this as I am, but says she’ll try her best.

My father, son, and husband are waiting for me at the beginning of the jetty. I take some deep breaths so no one knows how angry I am. I could’ve had the MRI today as originally planned, then gotten on a plane to MA and been here by dinner time this evening. The funeral isn’t until tomorrow. All this means that I could have accepted the July 10 appt with Dr. Domchek. But we didn’t know that when we left town yesterday. And it’s no one’s fault. I know I did the right thing by getting on a plane with my husband yesterday; I should be by his side while he goes through this.  Still, I’m worried I might have blown my chance to see Dr. Domchek, and I desperately want her team to look at my pathology; I have to hear what she says about my prognosis and treatment.

So, I made my way back to my family. My husband and his sister went to meet the funeral home people for a discussion of tomorrow’s events. My dad and I took my son for ice cream. Yep, life and death continue to go on even when you have cancer; there is no special treatment. Later, I spent a half an hour on the phone with my student loan company arguing over an incorrect default payment notice. I ordered some prescription refills. There is minutia even when you’re out of town. I also responded to so so many text messages and emails from friends asking what they could do for us – could they send a meal, can they help in some way, in any way. Many wanted to know how Dave was holding up. Many wanted to know how I am doing – how am I possibly managing all of this? I’m just going on. This evening I went to my father-in-law’s house and helped my husband pick out some items to bring back to our home, mementos of his childhood, his parents’ marriage, the life they all had together as a family. This weekend, as we go through the mindless tasks of unpacking, laundry, and putting away, we will merge some of his family relics with those of my grandparents, our other relatives who’ve long been gone, none of which is minutia. It is all the stuff of life.

 

For my next trick

And now, for shits and giggles, I’m going to predict the stage of my cancer. Now that I’ve had the PET scan and I’m pretty sure there’s no cancer beyond my breast, that helps me complete most of the chart I’ve been filling out over the last few weeks. And, using Komen’s handy Stages of Breast Cancer table, I think I’m able to figure out where my cancer would be staged.

In this PDF, I’ve copied Komen’s chart and shaded in spaces that match up with my current diagnosis. Much depends on the first column; I know T2 because my tumor size is more than 2cm but less than 5cm (although a lot of the information I have found on where a 2cm tumor would be staged is contradictory – some would stage it as 1; some would stage it as 2); but I don’t know node involvement or metastasis. Based on everything else I know, I think I’m looking at stage 1B, 2A, or 2B. Because the PET scan seemed to be clear (according to the tech in the room), I am going to assume no lymph involvement or metastasis, so my guess is that my cancer is stage 1B. Is that my final answer? I dunno – I might have to phone a friend.

PET Scan

I had the PET scan yesterday. I won’t get into detail about the 2hr process; it was relatively easy if you’ve been through a CT or MRI (and it involved a 45 minute nap!). After the initial prep, the technologist took me into the room with the machine. It seemed like she’d read my entire medical record because she knew I was BRCA positive. So was she; she told me a whole story about her sister who’d had lots of surgery (mastectomy, hysterectomy, oophorectomy, etc) and has refused to go to the doctor since then. “Should she go?” she asked me. “I mean, look at you. You did all of that, and it came back. Did you go to the doctor?” “Well,” I said, “yeah, I want to the doctor every year for a check-up. But the doctor didn’t catch this. I found a lump while I was in the shower, just like you see in the movies.” After saying that, I felt a little irresponsible and mumbled, “Still, seems like it would be a good idea to go to a doctor?”

The scan didn’t take long, and when she slid me out of the machine, I asked if she saw anything. She shook her head and said, “just in that area of the breast.” A doctor will still need to read the images, but I feel pretty confident that this woman knows what she’s talking about. Most techs either tell you what they see when it’s nothing, or when they see something or it’s too advanced for them to really know what to look for, they say, “you’ll have to wait for the doctors report.” I’m trying not to be too optimistic – nothin’ like having your hopes and dreams for a cancer-free body smashed to bits (and I already did that once this month) – but I am feeling like maybe this won’t be as bad as I imagined.

In which I do some craaaaaazzzzy math

The HER2 was tested again, this time using FISH, which is considered to be more accurate and more conclusive. Now I know that my HER2 is negative. Supposedly this is good:

Cancer cells that are HER2 negative may grow more slowly and are less likely to recur (come back) or spread to other parts of the body (NIH).

Unfortunately, I also found this bit of info with the help of my good buddy, the internet:

Most patients with metastatic breast cancer have HER2-negative breast cancer. (ASCO)

Luckily, I took Symbolic Logic in college, so I know that “most patients with metastatic breast cancer have HER2-negative breast cancer” does NOT = “most HER2-negative breast cancer is metastatic” (just like “all girls with brown hair like ice cream” does not mean that “all girls who like ice cream have brown hair,” which seemed to be a common example in that class.) Nonetheless, I’m not liking the fact that the “m” word came up in my research on HER2-negative cancer.  But let’s carry on.

As I continue my quest to predict my staging and treatment before I meet with my doctor on July 8 (as constructive a hobby I’ve ever had), I came across information about Oncotype DX.  Knowing an Oncotype score can help predict the chance of metastasis as well as how best treat a cancer and if chemotherapy is likely to be of benefit, especially in ER+ cancers (hey, my cancer is ER+!).

I didn’t see this score mentioned in any of my pathology or imaging results, so I emailed Dr. McAuliffe to find out if the test had been done and what my score was. She replied that we would discuss this on July 8th. Figure it out myself before July 8th? Challenge accepted!

Interestingly, I found this article in which oncologists from my own hospital system, two whom I saw in 2012/13 in “Bryna takes her Breasts Off ” (not a porno) developed three ways to calculate an oncotype score without doing the actual genetic testing. It’s unclear to me why this would be preferable (my guess is cost, since it seems like not all insurance covers Oncotype testing). Of the three calculations that can be used, they say that one of them is the most accurate. It looks like this:

Magee equation 2: Recurrence score=18.8042+Nottingham score*2.34123+ERIHC*(−0.03749)+PRIHC*(−0.03065)+(0 for HER2 negative, 1.82921 for equivocal, 11.51378 for HER2 positive)+tumor size*0.04267.

I bet you’re thinking, “there’s no way a woman with four degrees in English will be able to do that equation,” especially if you’re my husband, but you would be wrong. Using my pathology reports, I figured out the corresponding information needed for each piece of the equation (Nottingham = 2; ERIHC = 260; PRIHC = 150; HER2neg = 0; Tumor Size = 2.4). I used Excel to do the math, and voila, Oncotype Dx = 9.249368. Less than 26 is considered low:

Recurrence Score of 0-15: The cancer has a low risk of recurrence. The benefits of chemotherapy likely will not outweigh the risks of side effects. (breastcancer.org)

According to the Magee researchers, when the score is very low or very high, we can expect the Oncotype score to be similar. So, if I did this math correctly, then my guess is that my Oncotype DX is on the low side.

Okey dokey, so here’s what we’re looking at in total so far:

 

Cancer Feature	Result	My assessment of what it means
Estrogen Receptor	Positive: 260	Good
Progesterone Receptor	Positive: 150	Good
HER2	Negative	Good?
Tumor Size	2+ centimeters	??
Ki-67	High, 40%	Bad
Oncotype DX score	9.2	Good
Grade	High Grade (3)	Bad
Metastasis	???	???
Lymph Node Involvement	???	???

For bonus points, I also made this table here using HTML because WordPress does not include a table maker as part of its visual text options. Come on WordPress – I’m self-diagnosing cancer here – can’t you throw me a bone with a table maker?

Blame

I remember exactly one thing from high school psychology class, and that is Kubler-Ross’s stages of grief. Ok, I should clarify – I remember that there are stages of grief, and I’m pretty sure that anger and denial are two of them. Also I remember them as Kubla Khan’s stages of grief. But I digress.

The way I remember it, blame is a stage of grief; but it isn’t, according to Kubler-Ross. Yet, I am pretty sure I have been grieving over the past couple of weeks, and I have to acknowledge that what I have been spending my time doing lately is blame, blame, blame. It explains why I spend hours – HOURS – each day reading the same reports from my medical records over and over again, looking for what someone missed in 2013. It explains why I spend even more hours reading dense medical research. It explains why I have probably only spent about ten minutes crying or feeling real sadness about this (although my daily Effexor + Klonipin cocktail explains that, too).

But back to blame: I continue to be convinced that because of the kind of DCIS I had in 2013 (ER/PR+, grade 3, comedonecrosis), that in addition to the mastectomy I had, I should also have had hormone therapy (Komen) and/or possibly radiation therapy (Collins et al). Studies are also out there that say neither of these are necessary after mastectomy, so I can also see why my doctors would not have prescribed either.

But that hasn’t stopped me from blaming them anyway. One thing I’ve always thought was a bit strange is that my plastic surgeon’s name is on the pathology orders from 2013, not the surgical oncologist. He and I have always had a nice relationship, and he is fantastic at responding to email, so I sent him a message last night asking him if he could tell through the computer if the surgical oncologist who did my mastectomy (who has now left the state) had ever looked at the pathology. I thought there might be a sort of “check in, check out” system where they could see everyone who has looked at an electronic record. He first said he was really sorry to hear my cancer had returned; he also said he could not tell who had looked at the record, and he explained a bit why his name is on it (because the OR was booked in his name, not hers). Sensing a bit defensiveness in the explanation, I wanted to assure him that I was only curious if the oncologist would have been alerted to the availability of the pathology results. After a few emails back and forth (during which he responded almost immediately), I finally explained what I was really looking for):

I guess I am wondering if Dr. Ahrendt might not have seen the pathology because it was in your name (not at all saying that’s your fault – she should have been looking for it, and for all I know, she did see it and thought the mastectomy was enough treatment). But I don’t think she did see it, nor did any oncologist ever see that pathology. If they had, I am almost certain I would have been given Tamoxifen at the least and possibly even radiation (ER/PR+ grade 3 DCIS w/BRCA2 mutation — even with mastectomy, I have read in a ton of research studies – there is usually more treatment). I mean, I could still have ended up where I am now. I just can’t help but wonder….. it’s a lot to have gone through to end up with cancer anyway, so I guess I’m trying to figure out how this happened.

Aaaaaaaaand, thus is the end of my relationship with my plastic surgeon. He did not respond to this email. I mean, I don’t blame him. Here I am, essentially accusing one of his colleagues of a major fuck up. Even if he believes it didn’t happen, he can’t respond to my email without possibly implicating himself. And, if I were to sue (which, as I explained to my cousin, I only plan to do if my diagnosis is terminal – I’m not leaving this earth without ensuring that my husband and son have billions of dollars from the hospital that left me for dead), these emails would most certainly come into evidence. I do hope he’ll operate on me should I need him this time around, but I suspect he might be less than agreeable to working with someone who is this suspicious.

Of course, I don’t only blame the doctors. I blame myself… a lot. After my 2013 hysterectomy/oophorectomy, my mood swings became completely unbearable to myself and others, I began to take hormone replacement therapy, knowing full well that it can increase the risk breast cancer. In order to avoid this, I took an extremely low dose for a bit less than two years, up until I turned 40 years old when my gynecologist explained I would (had I not had the surgery) begun to lose the natural estrogen in my body anyway. I weaned off before that point and switched my antidepressant to Effexor, which is often prescribed off-label to manage menopause symptoms. Given that my current cancer is ER/PR+, it seems pretty obvious that the HRT could have contributed to its development.

I also blame my lifestyle choices. While there is no science linking healthy eating or exercise to cancer prevention, of course I can’t help but wonder if I treated my body better, would this have happened? There is science linking high BMI to breast cancer; my BMI is currently 33.8. This means I am “obese” – not as bad as I was about a year ago, technically “morbidly obese.” My BMI has been in this area (or higher) for the last 20 years or so. Has this extra weight, putting pressure on all of my joints, bones, muscles, and organs, possibly down to the cellular level, caused this cancer to develop? Definitely possible.

Kubler-Ross would say that blame is part of anger (one of the actual stages of grief) and/or negotiation (another one). I don’t quite feel angry – while I am intellectually angry (that is, I know I am angry, I think angry thoughts, yet I don’t feel like screaming or yelling – most likely a symptom of the cocktail of Effexor and Klonipin that tends to keep me rather emotion free). Maybe it doesn’t really matter what stage blame is. My therapist, who I saw this afternoon, says I’m allowed to feel whatever emotions I want about this, and I shouldn’t worry if they’re healthy or productive or what category they fit into right now.

I also learned something new about Kubler-Ross’s stages of grief (well, I probably learned this in high school psych, but I didn’t remember it). I’d always thought, apparently as most people do, that these are stages people go through after experiencing the loss of a loved one. But really, they were intended to:

describe the process patients go through as they come to terms with their terminal illnesses… only later applied to grieving friends and family members, who seemed to undergo a similar process after the loss of their loved ones (psychologytoday.com).

I don’t know yet if this specific cancer is terminal. Having a BRCA mutation means I’ve always thought that cancer would kill me at some point; I’m not necessarily thinking it will be now, but eventually….. And that’s what I blame the most – I blame this fucking gene: its control over my life, the way it gets to decide what happens to me and my family members, the way it fucks with my head so that whenever I have the slightest pain in my body, I think it’s back; that every time I think I have done something to control it, it laughs back in my face to say “nope, fooled you again.” So, BRCA gets the brunt of my blame, the backhanded slap, the big ole Fuck You. And in terms of Kubler-Ross’s stages, I’m not in any rush to leave anger right now.