Port

I'll be getting a chemotherapy port on Monday. It's a little titanium gizmo that has a shape much like Apollo Command's re-entry module, although (obviously) in miniature. It will go just under my skin in my upper chest, below the collar bone, and will be attached via a little tube to a major vein for easy blood stream access. The idea here is to facilitate both blood draws and chemotherapy infusions. From what I understand, there are fewer nerves there than in the arm or other places that health care folk might think to stick a needle. I wonder if they could insert a second port for coffee infusions. And maybe a third for wine! A tawny port port, perhaps? I'm thinking the insurance wouldn't pay for that, though.

My Treatment Plan

I've often heard people say that a cancer diagnosis is incredibly difficult, but once you have a plan for treatment, it gets easier. I have always responded politely to such assertions, but quietly doubted them. Well, I'm still in the shitty situation of having breast cancer, but I now have a treatment plan. And yes, it does make things seem a bit more manageable, at least for the time being. Knowing the course of treatment is better than sitting around not knowing anything except that you have cancer, and I have a high degree of confidence in the care I am receiving. So... fasten your seatbelts, people. Here we go:

A "neo-adjuvant" approach

I have decided on a neo-adjuvant course of treatment, rather than adjuvant. What this means is that instead of starting with surgery and moving on to chemotherapy and radiation (adjuvant approach), I will begin with chemotheraphy, followed by surgery, then more chemo, followed by radiation. My oncologists here in Urbana, as well as the oncologist I have consulted with in Seattle, have all agreed that there is no statistical difference in outcome between these two approaches based on clinical trials. They are equally effective in that regard. However, based on what cancer researchers are learning about my kind of cancer, which is a nasty and aggressive kind, but also very responsive to chemo- and hormonal-therepies, there are some strong theoretical supports for a neo-adjuvant approach over a standard adjuvant approach. There are several reasons for this, but two reasons that really hit home with me are:

1. Considering that it is a fast growing cancer and that it is in my lymph system (and therefore knows how to live outside the breast), it may be smart to blast it at a more holistic or whole body level to kill any cells floating around in my blood stream, as well as my established tumors, to get rid of it before any rogue cells have a chance to form metastatic tumors.
2. We will be able to see the chemo working pretty quickly and see the tumors shrink up and (hopefully) go away. In other words, you know if it is or isn't working. With the more standard adjuvant approach, one gets the satisfaction of removing the breast and lymph nodes right away, which provides more information for final staging and the oncologist in charge of managing my later targeted radiation. You then get chemo; however, you don't REALLY know if it's working because you don't get to watch the tumors shrink. They've already been removed.

To be clear, the doctors have all agreed that either approach would have been fine for me, but almost all of them leaned slightly toward a neo-adjuvant approach for my cancer: ER+/PR+ and HER2+. The HER2+ part is what makes me a good candidate for neo-adjuvant care. In the end, they advised me to go with my gut, and my gut said neo-adjuvant.

The plan

• Begin chemotherapy on Dec. 9th: A cocktail of three different drugs, two of which I will have infused once every three weeks, and one of which I will have infused once a week. This will last for 4 cycles, or 12 weeks, which will bring us to early March.
• Re-imaging to determine the extent to which the cancer has gone into remission. If I have only partial remission, then proceed with a different cocktail of chemo prior to surgery. If it has pretty much done the trick, then move on to surgery.
• The surgery will be a modified radical mastectomy, which means removal of the right breast and all of the axillary lymph nodes (those in my arm pit), but leaving the muscle in my axillary intact. This will likely occur in mid-late March.
• After a few weeks of recovery from surgery, I will begin another round of chemotherapy, this time for 8 weeks, I believe. 
• In June or July I will have several weeks of daily targeted radiation to the areas around the breast and armpit.
• I think I will be on Herceptin, a drug meant to target my particular cancer, for a year, but I'm not sure about that. 
• I will then be on hormonal therapy (Tamoxifen or an aromatase inhibitor) for several years (I think 5-10) to help prevent recurrence.

A final note

I have had some interesting conversations with doctors about my particular cancer, ER+/PR+ and HER2+.  It seems that this kind only accounts for about 15-20% of invasive ductal breast cancers, and it has only become widely treatable in the last 5-6 years with the development of targeted hormonal therapies. I have a good prognosis, but had I gotten this 8 or 10 years ago, it would have been a very different story. I am so grateful to the goddesses and gods of science who have moved the field forward so rapidly in the past few years. I am now on that train, and while I am not a part of any clincal trials, I feel the train pushing forward. Should be an interesting ride.

Today's PET-CT Results

Clear! PET-CT was CLEAR. No metastasis. C-L-E-A-R clear. The cancer is actually in four lymph nodes, not two, but still... This is good news. This puts my final pre-surgery staging at T2N2M0. That is, (largest) Tumor = 2.1cm, (lymph) Nodes affected = 4) (and 3-5 earns the classification 2), and Metastasis = 0. I believe that the cut off between stage 2 and stage 3 is three lymph nodes, so I guess that puts me at a stage 3a. But the devil (or mabye the grace?) is in the details.

BTW, my primary care physician here in Mahomet called me personally with the news, knowing I would not have wanted to wait until my appointment tomorrow at 1:00 with the radiological oncologist to find out. I am so grateful.

"Radioactive, radioactive"

As I write this, I'm prepping for my PET CT scan with Grace. The nurse just injected radioactive something-or-other along with glucose into my body. Imagine Dragons' song springs to mind:

   Welcome to the new age, to the new age
   Welcome to the new age, to the new age
   Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
   Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive 

:-)

Triple Positive

OK, here's a post for those of you who are interested in some of the medical specifics: Craig and I met today with the oncologist (who is simply wonderful, by the way), and we got the pathology back on the cancer: Estrogen Positive (ER+), Progesterone Positive (PR+) and Human Epithelial Receptor 2 Neu Positive (HER 2 neu +). This is basically a triple positive, which in the breast cancer world is a lot better than a triple negative. From what I understand, this is a highly targetable cancer with chemotherapy, of which I will be getting a healthy dose. If any doctor or nurse friends or family reading this wish to provide more insights or thoughts on this, feel free to comment and elucidate. I am viewing this as a slice of good news in a broader "series of unfortunate events." Tomorrow, PET-CT scan. Stay tuned!

Introducing Grace

Meet Grace. She is a little fluffy dog that easily fits around my finger or in my pocket. My friend Zanne gave her to me last night: A new companion as I begin what will certainly be an unpleasant series of treatments. (See my post "on strength and grace," and Zanne's and Jim's comments, for a bit of context here.) She will go with me to surgery, to chemo, to doctors' appointments, and to radiation. She will sit by my bedside, both when I'm calmly dreaming of not having cancer, and when I'm quietly weeping. I will wrap her paws around my finger when I feel sad or scared. And I will train her to growl at adversity. I wonder, can I train Grace to deliver a bitch slap?

Those of you who have dogs or are dog lovers know that they can be warm and fuzzy, but also messy and smelly. They may lovingly lick your chin and nuzzle your check, and then turn around and poop on your carpet. Your dog will wag its tail excitedly when you come home, and when she arrives on your lap, you may get a whiff of the pile of dead stuff she just rolled in, having spruced herself up for your arrival. Such is Grace--many forms, at times messy, but always welcome.

Like me, Grace may not always look or smell pretty during this process. She may take on a rough and weary appearance at times. But while treatment won't be easy on either of us, I can now say that I will be going through all of this "with Grace."

On "Strength" and "Grace"

Those of you on Facebook may likely have already seen this, as it's making the rounds through the social networking world, but I find that so much of it rings true for me right now, and how I'm trying to go about this: 13 Things Mentally Strong People Don't Do. But I have some other thoughts on this...

On "Strength." It is a no-brainer that no one is mentally strong all the time, and if anyone leads you to believe otherwise, they are lying. 'Nuff said about that. But I do have a few concerns about what appears to be a standard of strength that people might strive to live up to (lots of people, not just cancer patients). When Skyping with Craig in between my mammogram and the biopsy, I told him, "I don't know how to do this. I want to do this with strength and grace." His simple and amazing response was, "Why? Why do you think you need to do that?" Indeed, why? Why did I want to do that? Why did I (correction, do I) feel the need, even the expectation to do that?

I have nothing against strength, mental or otherwise. In fact, I do aspire to it. However, I'm quickly learning that it is a standard that is simply unfair to impose on people in unchecked ways. While I find friends' comments about my supposed strength helpful (e.g., "You are strong and you will get through this"), "strength" in its soundbite form, as a cliche, is in itself weak.  Strength takes so many more forms than the link above would suggest: Everyday forms, teary forms, micro-forms, forms that sometimes don't appear fully controlled. Curling up in a ball and crying before getting out of bed in the morning: one last bout of sobs to send the remaining night demons packing. Taking a sleeping pill at 5:00 am to get just a couple more hours of sleep. Slapping an extra helping of whipped cream on a latte.... Close your eyes and visualize these events. They may not match the standard of "strength," but how are these not strong?

On "Grace." I have this image in my mind of Craig's mother, Jan, with cancer, near the end of her life. Her words to her friend, "Don't cry for me, Lois, I've had a good life," ring in my ear. Her perpetual lack of complaint, and her willingness to still do things for others before herself. Even when she was in pain. Smooth lines through life. Giving. Laughter. Softly putting others first, and smiling all the while. Jan really was amazing, and I continue to admire her grace. But let's be clear: That was Jan being Jan. She was always like that. It was not a false grace that she took on because she had cancer. 

My high school friend Kathleen, a military woman, recently offered to put on her fatigues and cammo paint and "open up a can of whoop ass" on my cancer. Close your eyes and imagine it: It's rough, it's abrupt, it's fierce, it's hard. It's a loud and welcome complaint and threat against my cancer. No smooth lines there. But how is that not also grace?

"Where we are"

Hello, friends. This is actually a copy of portions of an email I sent to some friends just prior to creating this blog, so I'm reposting here, as it contains some specifics about "where we are."

**********************

I have met now with most of my doctors, and they are all awesome. I'm being treated at the Mills Breast Cancer Institute at Carle Hospital in Urbana. They use a team approach here, and based on conversations (family connections) with oncologists elsewhere (e.g., Fred Hutchinson Cancer Center in Seattle), I am getting top-notch care. At first, based on the mammo and ultrasound, they were pretty sure I had cancer in 5-7 lymph nodes. However, I had also been told that it is very difficult to determine that on a mammo, as lymph nodes can look funky for a variety of reasons. I got my MRI results yesterday, and it showed cancer in only two nodes, and nothing suspicious in the left breast. So, right now, just the invasive ductal carcinoma on the right side and two lymph nodes. This is a slice of good news in an otherwise quite unpleasant situation.

I will have a few other general tests, including a genetic work-up this coming week, and a PET-CT on Tuesday, November 26th to look for metastases. They say the odds of that are fairly low (still worried, myself, as this appears to be a fast-growing cancer). I am penciled in for surgery on Dec. 10th, but depending on the pathology of the tumors (which isn't in yet) and the PET-CT, that could change, such that I would do chemo prior to mastectomy (neo-adjuvant, rather than adjuvant chemo). The results of the surgery will determine my staging, but if the cancer has not metastasized and if there is cancer in no more than 3 lymph nodes, then I will be staged at "2B." 

Regardless of the final staging, I will get the whole kit & kaboodle of treatments: Unilateral mastectomy with lymph node dissection, ~6 mo. of chemotherapy, and radiation. A package deal! Breast cancer has become a highly treatable disease and science is on my side. In a sick sort of way I'm actually looking forward to giving my cancer a serious bitch slapping. :-) I am not looking forward with glee to the treatments, but they don't scare me, either.

Also, if this pans out in the direction it looks like it's heading, I will be able to go to the Literacy Research Association conference Dec. 4-7. Those of you who are a part of my professional world know how important this is to me. My stepmother, Patricia, (a.k.a. My female professional role model BFF soul sista) will be flying to Dallas to stay and attend with me. My dad just left to head home, and my mom comes to stay with us tomorrow.

This should prove to be a very interesting and roller-coasterish year. Thanks for all your love and support! And have a wonderful Thanksgiving, everyone, as we have an enormous amount to be thankful for.

Invasive ductal carcinoma, shitfuckdammit

Doctors here in Urbana, IL have actually been following my right breast for two years. Back in December 2011, they found a suspicious looking calcification, possibly a ductal carcinoma in situ (DCIS), which I would say barely even qualifies as Cancer as we know it, as it does not metastasize. It was in a spot that was virtually impossible to biopsy without removing a large portion of my breast. So, we just waited and followed it: Every six months I went in for a mammogram, which was typically followed by the words, "No change."

Meanwhile, back at the ranch (i.e., a different part of my breast), a small cyst I'd had for years started growing. I had it checked out, and it was nothing to worry about. But I felt another one right next to it, so I had an ultrasound done on it (December 2012). It was deemed to be another cyst, and a similar assessment was made in April 2013 in my third follow-up mammo. But it continued to grow, quickly. I was not worried because I thought it was just a cyst. In retrospect, this cancer was popping up around the cyst (I think), and there really wasn't anything substantial there six months ago.

Fast-forward to Wed., November 13th, 2013, the date for the last of my six month follow-ups. I was so confident that it would be clear, that Craig was not even in town. He was in Denmark at a conference. But this time, I was put in "The Room." You know, the one with sofas, pretty paintings, dim warm lighting, and a box of kleenex. Shitfuckdammit. One of the paintings was a large Georgia O'Keefe print of a bright blood orange flower, with a very dark irregularly shaped interior with rough edges. I'm not superstitious, but I didn't like it. It looked like a scary thing inside a beautiful thing.

This time, it was "not okay." "Change in the breast tissue." "Very concerned." "We're pretty sure this is invasive cancer." "Very concerned." Rocking back and forth, shitfuckdammit. I can't remember everything that was said, but at one point the nurse asked if I wanted to see the image of the largest tumor (there are three, two of which appeared on imaging). "Sure, what the hell," rocking, holding my knees, rocking, forward, backward, forward, backward. I looked at the screen and it looked exactly like a black and white and gray version of the painting--same contrasts, same edges. "That Georgia O'Keefe painting is the wrong choice for this room," I told her. When I explained why, she agreed. She'd "talk to the decorator about that." More talk. "Biopsy." "Lymph nodes." Shitfuckdammit. She left the room so I could call Craig in Denmark. Whimpering. "I need you to come home, please come home." The nurse comes back in and we schedule the biopsy. The painting is still there. I get up, walk across the room, and I turn it around. Because no one else was going to do it.

I could write a lot more about what happened between Wednesday and the following Monday (Biopsy day!), and when I found out on Tuesday afternoon, but I'll leave that for other posts. But it is cancer, and it is in at least two lymph nodes. Shitfuckdammit.