Monday's trip, depression, and a pinktober article

I was just too tired to post the results of my day at UAB yesterday. That trip wears me out - not just the 8 hours in the car, but the tests and, frankly, just walking into the clinic. We hit the breezeway that leads from the parking garage to the clinic and I felt the anxiety start creeping in. I felt the shakes, the tears, the "nonononoIwanttogohomepleasedon'tmakemegointhere" voice start. It's an act of sheer stubborn will (and clinging to Andy's hand) that allows me to keep putting one foot in front of the other in that place.

I had my MRI, and let me tell you, IT HURT. Remember my recent trip to the ER and diagnosis of costochondritis? Apparently even though my sternum doesn't hurt constantly and it doesn't seem to be taking the predicted 6 weeks to resolve, lying on a bed that has holes to drop the boobs into, meaning a hard thing between them is where your weight goes, isn't as fun as one might imagine. When it was time to get up, my sternum, chest and back hurt so badly that Andy had to come in and help me get dressed. I was in tears not only from the pain, but also because I'm sick of this. I'm sick of being screened for cancer (apparently having the most aggressive surgery for cancer that was caught as early as mine exempts you from nothing when it comes to screenings), sick of it hurting, sick of it causing such horrible anxiety.

The good news is that the MRI ruled out any recurrence. I really do "just" have costochondritis, and I'm good for another 6 months. I have two small cysts, one in each breast, that haven't changed (I didn't even know they were there), and are of no concern.

Yesterday I had the MRI on my shoulder; I'll get those results Monday when I see my orthopedist. There is a chance it's related to my mastectomy, as my other shoulder was when it was impinged.

So, if I have no recurrence and my shoulder problem is not cancer, riddle me this: why am I depressed? Why am I still close to tears (though at least the anxiety has dissipated), having weird dreams, and feeling so down I can't be bothered to accomplish much?

I'll tell you why: because as I said above, I'm sick of it all. I'm sick of finding more long-term issues that nobody told me could happen (hello, shoulder, I'm talking to you), I'm sick of the anxiety, I'm sick of the drive to UAB, I'm sick of pinktober, I'm sick of knowing that there are those who really wish I'd just move on and not mention having had cancer. I had it, I live with its aftermath, and while at some point it may move to a different part of my brain, right now it's really close to my mouth and out it comes. It's not my job to keep others comfortable about my cancer.

So, that's where we are right now. Today I'm going to have a treat day: I'm going to Sephora (oh, someone protect my wallet), then to get a manicure, then to Wednesday knit night, which I've missed since August.

I leave you with this article: Why #Pinktober consumerism makes this breast cancer survivor uneasy - I didn't write it, but I could have, right down to the disbelief and, yes, guilt, that comes with not needing radiation or chemo.

Inspiration - but not the fun kind

It's been awhile - almost a year, to be exact, but I'm inspired again. Inspired by the influx of new folks to Knitters With Breast Cancer, my online support group, and realizing that things haven't changed much as they struggle with the exact same decisions and issues that I did when I was newly diagnosed. I'm inspired by the much-dreaded pinktober's early start, with its pink awareness crap in everyone's faces. I'm inspired by tomorrow's visit to UAB for a 6-month oncology check and my first post-cancer MRI. I'm inspired by too many BC sisters who are dealing with recurrence and are now considered stage 4/metastatic, and the knowledge that MBC is desperately underfunded and that's where we need to point our breast cancer awareness. I'm inspired by being diagnosed with lymphedema, which both my oncologist and my plastic surgeon missed (and which is a whole 'nother post). So lots of inspiration, none of which I particularly want.

Last Sunday I had an ER scare. I had sudden, sharp pain in my sternum, along with nausea and dizziness. After a couple hours of tests, I was sent home with a diagnosis of costochondritis. While this is likely the case, two things scare me: the first, this was my friend Brenda's original diagnosis before they discovered that her pain was due to cancer in her sternum, and second, it came on suddenly and resolved within about 48 hours, which isn't the norm (though when I've ever been the norm I have no idea). I'm told the MRI "sees" the chest and sternum, so if there's anything going on I'll know by tomorrow afternoon. In addition, I found a lump in my shoulder, which my orthopedist says is likely something-or-other with my acromioclavicular (AC) joint - basically an injury (except I didn't injure it). I have an MRI for that on Tuesday; he said that while he'd always do an MRI, with my history it's vital. If it sees what he expects, an injection may be all the treatment I need. I'm just so tired of there always being something, and while that's been the case much of my life, post-cancer everything carries a much heavier weight.

Most people consider going to the doctor when something hurts or changes. Sometimes we dismiss it because we're getting older, or it's just a cold, etc. But here’s the thing: for those of us who have/had cancer, it's completely different. We are forever changed - we've lost an innocence we didn't know we had and gained fears that, while time may dull somewhat, will never go away. We all cope a little differently, but we all experience the fear. Logic doesn't help, things like "the odds are..." don't help, and pats and "there there, it'll be fine" doesn't help. My coping strategies for this new normal are things like pajama days, antidepressants, copious amounts of knitting and crochet, tears (I wasn't much of a crier before), fun-colored hair, a comfort blanket that I knit myself, sleeping with my stuffed llama and unicorn (both gifts from my son), and allowing myself to FEEL, even when it’s not “socially acceptable” and others want me to be positive and move on. I do the best I can, and while it may not be “enough” sometimes, it’s what I have. I also subscribe to The Spoon Theory because right now, I have very few emotional spoons and I am gonna be damned selfish about how I use the ones I do have.

I'll have more to say in the coming month - about how to talk to people with invisible illnesses (and post-cancer definitely qualifies), about ways to actually help during pinktober, and links to articles and other bloggers who really "get it." In the meantime, I'm going back to my yarn and hanging with my boys, so I can get through the time til we leave for the long drive to Birmingham in the wee hours of tomorrow morning.

And so we begin...

2011 has quite literally been the worst year of my life. March 14th, the day before my birthday, I lost my grandfather - my hero, my rock. July 25th I lost my stepdad, who'd been there for me, loved me when I least deserved it, and who I adored. I did not exactly go into this journey at my best.

Here's a basic timeline - it's really long, and I don't expect anyone to get through the whole thing, but I want to record it for myself at least.

Wednesday, Sept 21, 2011, I go to North Okaloosa Medical Center (NOMC) for diagnostic mammography and ultrasound of the spot in my right breast doctors have been watching for years. I jokingly ask the technician when I can stop doing the every 6-month visits, and return to "hey, you're over 40 and own a pair of boobs, come see us in a year," and she says "Hopefully this visit." Little can either of us know what's to come, as I discover. She starts running in and out of the room, each time returning for more views. Something similar happens with the ultrasound, but nobody can tell me a thing. I go home and the anxiety starts as I wait to hear something. I get a letter that Saturday saying I have to follow up with my surgeon as there is something that's a cause for suspicion. Surgeon? I don't have a surgeon! I speak with my family doctor's office on Monday, and they get me in the next day with the surgeon he shares the office with.

Tuesday, September 27th: I see Dr. Dennis Stewart; he does a breast exam and feels nothing: the same as I have during self-exams at home. He tells me that I need a biopsy, but to try not to worry as the vast majority of these cases turn out to be fibrocystic changes, scar tissue, or other benign masses. It is more than two weeks before they can get me in for the biopsy.

Wednesday, October 12th: I have an ultrasound-guided Mammotome biopsy. The radiologist tells me that he's confident it's old scar tissue from my reduction more than 20 years ago.

Tuesday, October 18th (aka The Day My Life Changed): My appointment is a work-in, and I wait, shaking, for Dr. Stewart to see me. I'm so jittery I mess up simple ribbing on the sweater I'm knitting, and have to put it away. Andy and I wait for an hour and a half, and when we finally go back, Dr. Stewart walks in looking like he's been sucker-punched. He sits down and says "I'm sorry to tell you this, but we found some carcinoma." In that moment, time stopped. I'm peripherally aware that Andy took a step backward, and immediately had his hand on my back. The colors in the room dim, and it's as if someone had one of those toys that blasts air at you. Dr. Stewart says that I have Lobular Carcinoma in Situ. I don't remember anything else from that visit other than him asking before he left whether there's anything else he can do for me, and I ask "can I have something for anxiety?" so he sends my family doctor in. He hugs me, and I ask him to stop because I don't want to cry my way through the waiting area. For some reason I ask him how we were supposed to tell our son. I don't know why that came out of my mouth but it's all I can think of at the moment.

I call my uncle when I get home; as an almost 12-year survivor of colon cancer, he was the one Andy felt would best be able to help me, and he was right. It took me most of the day to utter the words "I have breast cancer," but it was (rightly) pointed out that if I was giving words that much power, what example would that set for my son of how I was going to handle things? I forced myself to speak it out loud, and it was one of the hardest things I've ever done. My uncle told me not to tell my mom, as it was my stepdad's birthday.

I spend the rest of the day in a teary near-stupor. We start reading up on LCIS, and discover that some places - Stanford, for example - do not consider it a true cancer, but rather a neoplasia with a marker for future invasive breast cancer. Andy and I are very confused, and very scared.

Wednesday, October 19th: I see the Oncologist, who's treatment plan is lumpectomy and radiation, which we research and discover to be too aggressive for LCIS.

Thursday, October 20th: I have a diagnostic mammogram and ultrasound of my left breast. It shows that  I need yet another biopsy; there are two suspicious masses on the left side.

Thursday, November 3rd: I have two more Mammotome biopsies done at the same time, and go home for more waiting.

Tuesday, November 8th: I see Dr. Stewart, and he tells me that the masses are both benign - I cry in relief as this is the first good news we've had since all this started. My G+ update is "LEFTY IS CLEAR. I REPEAT, LEFTY.IS.CLEAR!"

Dr. Stewart feels that my case is complicated by some of the features in my tumor, and wants me to see a surgeon in Birmingham. I wait for the referral and roughly a week and a half later the Birmingham doc's office contacts me and tells me to "follow up with my surgeon" but gives no reason. I call Dr. Stewart's office and they are floored, as they hadn't heard a thing. At this point, I basically fall through the cracks, with no idea what will happen. I decide that I can't take anymore and visit my family doctor to request a prescription for Lexapro. After struggling for a very long time to wean off antidepressants 3 years ago, this is a very difficult decision for me.

The wonderful Renee in Dr. Stewart's office decides, after hearing me sobbing on the phone, to make sure I'm properly taken care of. She gets me in with The Kirkland Clinic at the University of Alabama at Birmingham, and things finally get going. UAB orders all my films, my biopsy slides, and my records. It takes a bit, as my tumor is apparently atypical (leave it to me to be the special snowflake), and the pathologist decides to bring it before the tumor review board. It turns out that Andy and I were right to push - while there is some LCIS, what I actually have is Ductal Carcinoma in Situ (DCIS). It's Stage 0, Grade 2. I'm unsure what to do with this information, other than to understand that I do, in fact, have cancer, and that any dreams of it being a mistake, or "just" LCIS, are gone. 

December 22nd - 3 months since all this started, we go to UAB. It's our hope that we'll leave that evening with a full understanding of my diagnosis and have a treatment plan. I have extensive mammography of both breasts, being called back for further images three times. I then have extensive ultrasound imaging, as the radiologist tells me that they are unsure whether the left side is really benign, or whether the right side known DCIS has invasive cells. It's recommended that I have an MRI, and at that point I know we're not going home with a treatment plan. Later that afternoon we meet two of my team of three doctors, and we discuss the diagnosis and potential treatment paths. If the left side is cancerous, I cannot have radiation treatment at home, as it is too closer to the chest wall and thus my heart. I have no clue how I'm going to pull off 6 weeks of daily radiation 4 hours from home. They're able to get my MRI scheduled for the following morning, and we return to our hotel rather than heading home.

The next morning I have an abdominal CT to follow up an ER visit I'd had back in August (unrelated to the cancer) to make sure nothing is going on, then the MRI. I finish the tests feeling sick and with a throbbing headache, and we go upstairs to see the radiologist. She tells me that the large mass on the left is, in fact, benign, and the right-side DCIS shows no sign of being invasive, which is great, but then she says that the MRI shows a new, previously unseen mass on the left side that "lights up" on the MRI the same way as the right-side DCIS. While there are apparently some benign conditions that can cause this, I have to have yet another biopsy of this new site. They will call me Tuesday to schedule it for next week, meaning another trip to Birmingham. 

We finally get to go home. I sleep in the car part of the drive, as I still feel awful from the tests and all the contrast I got. I start letting people know, and they hear good news - nothing obviously invasive, left-side large mass is benign. I, however, hear bad news in the newly discovered left-side mass, as it's likely that I have bilateral DCIS. Andy and I discuss options at length; while obviously we can't make any final decisions until the new biopsy is done and pathology is in, I am leaning toward a bilateral mastectomy with reconstruction. On the surface I realize this sounds drastic, but from a purely practical standpoint, as Andy puts it, it actually makes a lot of sense: I would avoid radiation (chemo is rarely done for DCIS, so has not been a consideration), would not need to take Tamoxifen (a drug used for estrogen-sensitive tumors like mine; it's considered a chemo-preventative drug as I understand it), which has side effects I'm not really interested in experiencing, and the mastectomy would drastically reduce my risk of recurrence, at least in my breasts. All these are things we'll discuss with the doctors once the pathology from the newest biopsy is in. We're hoping to conference-call or Skype with the team rather than having to make the 8-hour round trip drive just to talk, but we don't know yet whether they do that.  

I don't anticipate future posts being quite this long, but I wanted to play catch-up and it's been a hell of a ride so far!