Nearly cancer-free!

A long time since my last update! I suppose it should come as no surprise that chemotherapy really takes it out of you! And then the up-and-about weeks are (were) really crammed full of things to do. So I am writing to you finally from the uphill side of major treatment! Chemotherapy is done (thank goodness!!) and it looks like the worst of the surgery is, too.

After the mammogram of November 10 I had another consultation with the surgeon on December 1. At that time I learned that she was willing to do whichever breast surgery I wanted—a mastectomy, to be on the conservative side, or a lumpectomy, to preserve the breast. I had long since decided that I would gladly accept mastectomy over undue risk of death, but if a lumpectomy had a reasonable chance of extracting the disease then I thought we should at least try it. She was willing and she wouldn't have offered if it seemed a waste of her time and mine. Lumpectomy, then.

About the lymph nodes I did not have the same options. The sentinel node procedure I mentioned last time (where dye is injected to identify the node which drains the affected area, which is then removed) turned out to be too risky in my case. I had the one node we knew was diseased from the first biopsy and there were two nodes in the area that looked suspicious on the ultrasound. Sometimes there is more than one sentinel node, but there was no telling whether the suspicious nodes were fellow sentinels or further up the line from the positive node. So, the sentinel node procedure was not guaranteed to find all the trouble spots, and this was, as the surgeon said, not the time to push the envelope. You do *not* want to leave cancer in the lymph system. So, as I had suspected, a full axillary lymph node dissection was the safest option.

Between grading and the end-of-semester social flurry, I was so insanely busy in the week before surgery that I hardly had time to contemplate whether I was nervous or not. I think I wasn't, generally. I like my surgeon a lot and everyone I meet in the hospital who has asked me who I've been assigned raves about her skill and kindness. She's been involved in my case from the beginning; she knows my face and has spent time answering many of my questions. I was very confident going in about her abilities and her intentions. I was more worried about recovery—what it would be like, how long it would take—than I was about the surgery itself.

The other worry, brought on by the choice to forgo to the decisiveness of a mastectomy, was the path report! This is what you get after they take the tissue excised by the lumpectomy and stare at it under a microscope to see if or where there are cancer cells. What they want to see is a concentration of cancer cells with clear, negative margins around them or, if it's a particularly good day, they might see nothing at all. What they don't want to see is an overlap of cancer cells with the edge of the tissue sample or, worse, scattered cancer cells without clear boundaries at all. The results of this report is what determines whether you need another surgery—a second lumpectomy or a mastectomy.

As you might imagine, we waited on this news with bated breath! We were told it would take about a week, and on day number eight we were told that the lab needed to do another round of tests, which would take another day.  Noon, they said. This probably meant—the surgeon hazarded a guess—that whatever they were looking at was so small it was hard to identify. Ultimately good news, although even tiny bits of cancer in the wrong areas would mean more surgery. So we waited some more and tried not to assume too much. Noon the next day came and went. Harumph. Day ten was the Friday before Christmas and after seeing one of the nurses waiting for the bus and calling the office to find the receptionist gone, I paged the nurse practitioner. They were in conference at that very moment—the tumor boards meeting where all the care team gets together and talks about all the cases, and mine was up that day along with fourteen others and the pathologists were there and they would call just as soon as they could. Aaah! Any second now. And the second arrived, eventually, in its inevitable fashion.

The first news was excellent. There was no invasive disease left in either the breast tissue or the lymph nodes. They found nothing?!, I nearly squealed, but I had gotten ahead of myself. Not nothing, she said. Oh. Down girl. But the news was still nearly as excellent as that. Chemotherapy had eradicated the invasive ductal carcinoma. I'd had what they call a full pathological response. It happens in a minority of cases and it makes for an excellent prognosis. What they did find under all that invasive disease—or the scar tissue left behind by it—was a bit of ductal carcinoma in situ (DCIS). This is cancer isolated in the duct and not, or not yet, the invasive variety that I was originally diagnosed with. It was probably there all along and might have even been the kernel of the cancer we knew about, but was masked by the size of the invasive disease. The biopsy cores just never caught any of those cells. DCIS is not susceptible to chemotherapy, so it isn't surprising that it was left behind beyond the surprise of it being there at all. More good news: The margins around these cells was negative. Now the bad news: The margins weren't quite negative enough on one side, so they want to go back in and excise a little bit more.

A second surgery. Not the most fun one could have, but it's not really so bad. The vast, vast majority of my discomfort and recovery time is because of the axillary lymph node dissection, which has all kinds of lovely effects I'll rave about another time. The lumpectomy is a less complicated procedure. It should be straightforward and not impinge much on my recovery time. I don't yet know when that will happen... Almost certainly sometime in January.  If this surgery does what it's supposed to do, they'll finally certify me cancer-free!  I'll still have radiation and hormone therapy to contend with.  But, still, that will be pretty cool.

Thank you to everyone! To those who've visited, written, called, cleaned, gifted, fed, offered, delivered...or spared a good thought, prayer, or wish for me during this trying and eventful year. I am decidedly blessed.

Surgical Consult

I finally had that appointment with my surgeon.  The one that seemed forever and forever away?  Maybe I haven't mentioned that here.  But take my word for it:  I've been waiting for this for a long time.  And now ten days have passed since!

One big question has finally been answered:  Surgery will be December 13.  It's two-plus weeks earlier than I expected.  That's been a bit to swallow, I must say.  Although I waited for this appointment for what seemed like an age, December 13 just seems so...soon.  I guess it depends on what you're waiting for, how the time goes.  The good news out of that soon-feeling is that I only have one more round of chemo to go!  Hip hip to that.  November 11.  Last one.  The other good news, and what makes the idea of an earlier than expected surgery easier to deal with, is that I'll have two-plus more weeks than I thought for recovery and general non-doing before the next semester starts.  So that's very nice!

One big question remains to be answered:  What kind of surgery?  We are still on the fence about that.  My surgeon seems generally willing to have a go at a lumpectomy--you can always take more but you can't take less, after all.  The issue rests on both the size and the distribution of whatever remains of the tumor.  It no longer has distinct edges, to the extent that it's impossible to measure and difficult even to feel.  This is wonderful, of course.  The concern is that rather than shrinking concentrically into a smaller and smaller ball, it may have melted into lots of tiny pieces that still occupy a lot of space and, more importantly, are hard to find.  The latter is what I suspect, but only testing will ultimately tell.  We start that with a mammogram done on November 10.  If imaging doesn't reveal much, the pathology reports on the tissue taken via lumpectomy will show whether the cancer cells, if there are any, are concentrated or diffuse.  Concentrated means we trust clean margins if we have them; diffuse means we have to be more careful--clean margins around a few pockets of cells could leave other pockets behind.  And we don't want that.

The lymph node is still palpable, though now the size of my pinky nail instead of a jordan almond.  A lymph node dissection is very likely in my future, no matter the surgery.  It is the common protocol when lymph node involvement is certain.  They take out the same area of tissue in everyone and whether that catches 9 or 21 lymph nodes just depends on the individual.  If done before chemotherapy, this is part of the staging process--figuring out how far the cancer has spread.  Although we still want to know that, we'll never know how far it was before chemo and the main goal is to get the cancer out.  The removal of my axillary lymph nodes would mean all kinds of lifelong joys: many for the sake of preventing and coping with lymphedema (swelling of the arm caused by the obstruction of the lymphatic drainage), such as compression sleeves, physical therapy, limitations on repetitive motion; and others pertaining to limited immune response, with plausible instructions like, "Avoid infection and sunburn--forever!" 

Another option is a sentinel node biopsy, which is a relatively new procedure normally done in women who do not have confirmed lymph node involvement.  The closest lymph node responsible for draining the area of the breast with the tumor is identified through a dye injection, and only this and some surrounding tissue are taken and tested.  If these lymph nodes are cancer-free, the odds are that those further down the line are, too.  It is a much less invasive procedure with fewer side effects, but has the risk of missing (and thus leaving behind) cancerous cells.  An even newer idea is that women who have responded well to neoadjuvant (pre-operative) chemotherapy, even with previous lymph node involvement confirmed, may benefit from this less invasive attempt to find and remove the extent of the cancer.  My surgeon said she would give more thought as to whether I might be a reasonable candidate.  The balance is, as usual, between invasiveness and effectiveness, cost and benefit.  Another decision to await down the line--down the ever-shortening line.  Imaging, maybe more imaging, and another consultation on December 1.

Well, that is my big news at the moment.  I am otherwise generally doing well, though my two good weeks fly by hopelessly quickly!  I hope to write again soon, and with less medical mumbo-jumbo.  No talk of "catching up" today.  The mention of finishing things seems to prevent me from, well, finishing things.  So just, Until next time!  Take care, everyone!

Round two: The adventure continues

August 19 – September 8

My second round began on the Friday before the new term started. Luckily, both my parents were able to come out a little before that, so we had some time together while I was pretty conscious. We went to Ash Lawn, James Monroe's house, on the orders of my mother's doctor, who is from Virginia and expressed possibly well-justified annoyance that everyone goes to Monticello (which we had the previous year) and no further. Well, we are no longer guilty of this oversight, and it was lovely there. Then it was time to get knocked out again. Luckily, too, I had no teaching duties during the first week of school. I did go, in a bit of a daze, to the first day of three classes: the history lecture for which I am TAing, and the two classes I had originally intended to audit before all this happened. I wanted to get the syllabus for each and try to see if I would feel up to attending at all...after a few more days of recovery.

One of the best things my care team suggested for this round was to get me something for the pain. You see, the shot I get on the day after my major treatments, the one that increases my blood cell production, works amazingly well. I'm naturally a little neutropenic—deficient in a certain type of white blood cell—and if my levels aren't at a certain minimum they can't administer treatment at all. So this shot is very crucial for keeping me on schedule. Unfortunately, since blood cells are made in the bone marrow, when the medication is working it makes my bones hurt! A lot! The first time, I got up Sunday morning walking very much like Frankenstein and I never slept that week past 4am. It was worst in my thighs and upper arms, but the pain was present in most other places, too, especially in my sternum and joints. When I mentioned this, pain meds were quickly offered, and the second time I didn't have any trouble sleeping. For this, I am truly grateful!

That seems to have been the bright side. The weird effect on my mouth and taste took longer to begin but also lasted longer. It's difficult to describe, because it seems like several things are happening at once. My whole mouth gets sensitive to everything: heat, spice, pointy food. Even the crust of bread must be eaten very gingerly. If I lick my lips, it feels like they have been in the tub too long—somehow a little pruny. They're not, really, but they sure feel like it. Food either tastes like nothing (a fruit smoothie with no flavor), or like only one thing (primavera pasta that tastes only of black pepper), or like something totally different than it is (a mild Chinese brown sauce now inexplicably sour). I thought when I first learned about this particular side effect, clinically called “taste perversion”—which sounds, my mother points out, like a different problem altogether—I thought that it would last for the duration of treatment. I have been delighted that this and most of the really unpleasant side effects have so far faded within a week or ten days.

The nausea was slightly more intense, but was thankfully controlled with an extra dose of zofran and/or ativan here and there. The fatigue was worse, too, but not by much. I slept for an extra day—through Monday this time, when last time I was up and in the classroom Monday morning at 9:30am. I had a slight fever over the weekend, too, which was new.

Once I recovered, some trial and error in the wide world over the next couple of weeks led me to conclude that I shouldn't be out of the house for more than about 3 1/2 to 4 1/2 hours at a time. This last discovery forced me to make the difficult decision to stop attending one of the two classes I was hoping to pop in and out of as a rather unreliable auditor. It was too much, even during the last and most functional week of the cycle, to go to class on the days I had most of my teaching duties, too. I tried it. No good. So Greek Lyric Poetry had to go on hold. I still do try to attend Fragmentary Latin Historians when I am well enough.

The biggest change between round one and round two was the development of peripheral neuropathy, which started as tingling and stiffness in my hands and feet. I'm not thrilled about this. When I was first reading all the copious amounts of material that the breast care center gave me, I came across a pamphlet describing the many possible side effects of chemotherapy. I knew about most of them. I didn't know about the nerve damage. Even more disturbing was the caveat that such effects usually fade over time, but sometimes they don't.

I suppose this is a risk with many things. Hair loss can become permanent. So can infertility. But, for some reason, it was the nerves that led me to ask my doctor about whether chemotherapy at my young age made me more at risk for delayed side effects when I get older. There are some such risks, of course, but she said that it was my youth that gave me the best chance to overcome some of these more troublesome things—like the three I just mentioned—that just take time to return to normal. If the nerve problems become debilitating along the way, if I start falling over inexplicably or the like, they can reduce the dosage of the chemo. They'd rather not, of course. So the tingling is yet another reminder that cancer treatment really is designed as a delicate balance of poisoning the cancer without poisoning you quite too much. It is also yet another opportunity to practice not worrying overmuch about an uncertain future. My life is as full of such opportunities as ever, as you might imagine! So far, so good, anyway, and it does seem to be working! And that's the first priority.

Round one: Not as bad as I feared

July 29 - August 18

Below is an account, sent by email in August, of my first three weeks on chemotherapy.  It is also the last such pre-written stuff I have to share; everything from here on out will be fresh to all readers!  Thanks, as always, for your concern and support.

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The first three weeks, and the first round of treatment, are coming to a close, and I am getting ready to start round two on Friday.  I tolerated the drugs pretty well, all things considered, and all of the major side effects had come and gone in about a week's time.  The mentionable major side effects were serious fatigue, pain in my bones from the shot they give me to encourage blood cell production, and extreme sensitivity in my mouth along with the loss of most of my sense of taste.  I am fortunate that the drugs they gave me for nausea worked like a dream--I never had significant nausea or any vomiting.  Hip hip!!  That was my biggest fear when I heard the word "chemotherapy".  I can deal with tired; I don't mind being without hair.  Just don't let me throw up all the time!  So far so good.

I taught Latin every morning for three hours the week following my appointment despite all that, and really only the fatigue during the first two days made that challenging.  I was fine as long as what I did after that was go home and take a nap.  By the following weekend I was feeling pretty normal, but I do still have to plan for rest periods between activities where I used to be able to just go from one thing to another--though I probably used to do that more through sheer will than lack of tiredness!  I also have to eat a lot.  Everything my body needs it tends to need very urgently and without warning.  Sleep now!  Eat now!  Bathroom now!  Now now now!  I have found that I do react to the antibody they are giving me every week (Herceptin), with fatigue and some faint respiratory problems, but these are mild and temporary.  We will likely just keep a close eye on this to be sure it doesn't develop into a dangerous allergic reaction.

Last Saturday was my birthday, and we had a great party where everyone wore wigs or ribbons or hats (or some combination thereof) and the primary entertainment was to be a ritual shaving of my head.  I was going to shave it all and debut the adorable wig Mom bought for me--hence the wigs.  But then someone said, "Can we shave it into a mohawk first?!" and I of course said, "Sure, why not?"  And then the results, expertly molded by Scott, were so adorable and fun that we just couldn't bear to shave the rest of it, and I've been sporting the non-spiked version ever since.  I hope to make it to Friday's appointment before it gets too thin to look good anymore and I have to shave the whole thing.  I mean, really.  Why not?

The most important news is that the primary tumor feels entirely different from before.  What used to be a very distinct, hard as a rock flattish golf ball is now a much softer, much less distinct, even flatter mass that I must say I probably wouldn't identify as anything if that is all it was.  I am hoping that this is as good as it sounds.  I will certainly be asking on Friday!

So that is the long and the short of round one.  I'm currently finishing up two weeks off of work before the semester starts again next week.  I will be out of commission much of Sunday through Wednesday, but I hope that last time is an indication of how it will go this time.  I'm told that for the most part it is.  If I tolerate things now, I probably will continue to do so, though the fatigue often mounts over time.  Cross your fingers that my counts are good enough to receive treatment, and that I continue to avoid getting stray illnesses from the general public.  I have responded to some but not all of you and I will work to catch up further as I come out of the woods next week.  I read every one of your messages and look to them for strength and comfort--they do not go unnoticed!  As always, please feel free to share this message or its contents if it seems appropriate, or if I have inadvertently left someone out.  And, as always, no response is necessary.  I just want you to know how I'm doing.  I know you're pulling for me.

I hope everyone is doing well!

A plan in place

For those of you who have not already received this important information, below is a copy of the email from late July that explained my treatment plan and also my plans regarding school this year.  For those of you who have seen this already, I just have one more email to share now and it will be back to new material!

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First, good news!  The bone scan was clean and the CT scan almost certainly so!  They'll probably do another CT after a while just to be sure, but they were fairly confident there's nothing of interest there.  So.  Finally a negative test, and no Stage IV disease!  Hooray!  The breast MRI didn't show any hidden cancers either.  Hooray again! 

Next, a plan of action.  Because the cancer has already spread locally, to the lymph node(s), my oncologist and surgeon agree that we will start with chemotherapy to start killing any microscopic cancer cells cruising around my system before they can latch on to anything, or grow where they are, or what have you.  If we take out the cancer we can see with surgery, we leave the cancer that we can't until after recovery, and that makes my oncologist nervous when we know the disease is already on the move.  So, we'll work on it from the outside in.  That means that we may never know how many lymph nodes are currently affected, or therefore the true pathological stage of the disease (II or III?), but that doesn't matter because the treatment for II or III would be the same.  Another benefit of this course is that we can see if the chemotherapy is working as we go and adapt treatment if necessary.  And a third benefit is that we can start very quickly.

On that note, I start next week.  In six days, to be precise, though my portacath (IV access point) gets put in on Thursday.  Thank goodness for those!  I'm going to be very glad they're not starting IVs every week.  I'll get 6 3-week cycles of therapy, and the regimen they are giving me is called TCH--taxotere and carboplatin are the chemotherapy drugs, and herceptin is the antibody for the HER-2/neu receptor.  HER-2/neu cancers are pretty aggressive, I might have mentioned, and this probably explains the fast growth since my normal exam almost a exactly a year before I found this thing.  The herceptin is said to work very well, though, so that's good.  It's also said to have virtually no side effects for most people, which is also good, since I will get that every week!  I will get the two chemotherapy drugs only every three weeks.  Add to that a whole collection of things to surpress rash and nausea, and to boost my immune system, just to start with!  After that first treatment, I have one more week of summer school to teach.  It will be interesting to see how I feel once this finally gets underway.  I'm nervous, but glad to have a plan.

If treatment stays on schedule, which requires that I am healthy enough to receive treatment (meaning my blood work is good and I haven't got an infection or the like), I should wrap up around thanksgiving, then have a month or so of down time before surgery around the new year.  Then radiation, then hormones, blah blah blah. 

As for life.  I spoke with my graduate advisor, and she is happy to let me deal with this in whatever way I wish.  My choice is to continue to teach, and to do other work (attend classes or study for exams) as I feel up to it.  I will postpone my exams--I was anxious to let her know for how long but she said not to worry about it for a while.  I think, however, that it will likely be until next January.  I will thus use my last contracted year of funding--my fifth year--mostly for exams.  I am okay with that even if that's all I get--I have to be--but she was clear that they would do whatever they could to support me for the extra time that I would need because of this.  My supervising professors for my TA position for the Greek and Roman history surveys next year are also on board, willing to work with me to line up contingency plans should I need a sub sometimes, or if illness keeps me from work for a while.  Tomorrow I will write to the rest of the faculty, and then everyone who should know will know.

So that is the latest.  Thank you again for all the incredible support.  I welcome contact from any of you, and questions, or anything you like.  I can't guarantee to be timely in response, if response is appropriate, but I'll do what I can.  (There are several of you I have been intending to speak with any time now for a while, and I haven't forgotten you!!)  If ever in doubt as to what to do to help, you can always send the universe a happy thought of a speedy recovery.  Try not to worry. 

No need to respond to this unless you want to.  I just wanted you all to know the plan, the rationale, and my approach to the near future.

May you each be happy and healthy!

Remember the beets!

 Or, How I stopped catastrophizing. Part Two.

Sorry about the long delay. Treatment really knocked me out last week. I hope to be all caught up to the present moment soon, but I really want to finish this story first! (Warning: This post acknowledges, briefly, the existence of bodily functions. It's a hazard of having a medical condition that you start talking about such things.)

To resume: After a long night of packing in an aimless daze, I was off to my early morning flight. I was still coughing, of course. It wasn't bad, but that occasional dry wheeze was a constant reminder of my condition simply because I was abnormally worried about its cause. It didn't help that it had gotten a little worse overnight. But I was generally at peace with the idea that the cough did not, at least for the time being, constitute an emergency.

Soon I was waiting at the gate of my connecting flight in North Carolina. I slipped off to the bathroom for a last stop before the cross-country flight. What do I find when I'm done? Obvious traces of bright, bright red.

My heart made a little thud and my jaw dropped. Blood! Wait, what?! Really?? I looked again. Definitely very red. What the @&#%!! I was actually kind of angry. Are you kidding?! I've decided to make this flight. I'm in North Carolina! Now I'm pooping blood?! What the hell am I supposed to do about that? Why is that even happening? What in the world is that a symptom of? Do I have cancer in my colon? What are the odds of that?? This is just freaking great. I'm tired of bad news! Aaargh!! I was at a loss.

Wait. I looked again. Blood is very red, but it's an orange-red. This is a weird color. It's...pinky-purple. I racked my brain, confused. Then I burst out laughing, right in the stall.

It's the color of beets. It's the color of last nights beet-filled, pinky-purple dinner. It is not blood. I do not have colon cancer. I am not bleeding internally. This is not an emergency. It's not even a symptom. I am fine. I am really fine.

So I got on another plane, relieved and amused. And this really would have been enough of a scare and a lesson for one day—one day in what seems like the longest week of my life. But the story doesn't end there.

That evening was my aunt's birthday party. My dad took me and my grandmother was there, and many of my aunt's friends. There was food and drink and a lovely view on a beautiful southern California day. Everything was going along just fine.

As it got on into evening, though, I started to get a headache. This didn't surprise me at first since I'd been awake since 3am Eastern time. But then it got worse, and worse, and I was really not feeling so hot. And my mind started going again. Wow, I feel like crap. Why does my head hurt so much? Is there cancer in my brain? Or is cancer just actually starting to make me feel sick? Does cancer make you feel sick? What else could this headache be? I've never had a headache like this from being tired. I might actually have to call this one and tell Dad I need to go. This sucks. I don't want to leave. I certainly don't want cancer to make me leave. Where's the water?

While I was debating whether to admit my mounting misery, my aunt came out to announce that there was coffee ready in the kitchen. And it hit me: I never had coffee today. I have coffee every morning, but I didn't have coffee today. Why didn't I have coffee today? Oh, because I wanted to sleep on the plane. But then it was lunch and now it's after sundown... This is not a cancer headache. This is a caffeine withdrawal headache. I have had that kind of headache before. It was a lot like this. I am fine. Again. I don't have to put myself in a sick bed. I just need coffee and maybe some ibuprofen. That's it. That's really it.

This is how I came, in a meager few days, to give up most of the very normal paranoia that comes with the diagnosis of a life-threatening disease. For a little while, every twinge, every pain, every odd sensation was cancer. I have cancer in my bones! I have cancer in my everything! But after recovering from the ridiculous, mind-spinning panic sparked by perfectly average events—twice in one day—I calmed down a lot. And now Remember the beets! is what I think with a smile when I'm tempted to make a medical crisis out of a proverbial mole-hill.

You might be wondering what became of my cough. That very same Saturday evening, just to make it three times in one day (although it took me until the next day to believe it), my mother reminded me that on the previous Tuesday—the day of all my testing—I had heartily choked on the peanut butter and jelly sandwich I was eating while I was updating her over the phone. I really inhaled some crumbs. She said that the cough was probably just irritation from that. I was skeptical, as I mentioned, but by Sunday afternoon there was almost no more cough and it was completely gone shortly thereafter. So I guess it was the crumbs.

As it turns out, there's no cancer in my lungs or in my colon, or bones, or, we assume, in my brain, or anywhere else we didn't know about already. Now every symptom is important because chemo does such strange things to you, but I haven't panicked since that Saturday—unless you call paging the fellow on call three times over a fever panicking, which I don't. But that's another story.

Just because you're paranoid...

Or, How I learned to stop catastrophizing. Part One.

So I mentioned last time that the phase after diagnosis was harder than the diagnosis itself. The most difficult moment I've faced occurred just a couple of short hours after I sent the email (see previous post) that delivered the news to many of my friends.

The problem had started the day before, the day of my diagnosis, in the form of a dry cough that had since gotten worse. Now it was getting close to the end of business hours on Friday afternoon, and not only were we headed into the weekend, but I was due to get on a plane at five the next morning for a week in California. What if this cough was the sign of something dreadful? What if it was the sign of the worst? What if it was the sign of cancer in my lungs? (It may help to know, as the internet had told me, that the most common places for breast cancer to metastasize are the lungs, bones, and liver.)

We knew I had cancer, fine. But we didn't yet know the extent of it. For that, I was supposed to wait thirteen days for my consult with the surgeon, who would decide what diagnostic tests were appropriate. Then I had to wait to schedule those tests. Then I had to wait for the results. I was told that all I could do was wait. But they didn't know about this cough. What if this cough changed everything?

Okay. I know, I know, and I knew then, that the odds of me suddenly developing symptoms of Stage IV cancer on the very evening of my diagnosis were ridiculously small. Infinitesimal. Practically non-existent. But, still, I had this cough. And I didn't have it before. And it was getting worse. And I had cancer in at least one lymph node and a mass the size of a golf ball at 31-years old less than a year after a perfectly normal clinical breast exam and with no breast cancer in my family. I was not particularly comfortable relying on the odds. Should I stay home? Was it a good idea to put off this consult for an extra week so that I could fly across the country?

I called the radiologist. She had done the ultrasound and the biopsy, and she had called to deliver and discuss my diagnosis. I knew that she probably wasn't the person I would normally talk to about this, but she was the only doctor in my cancer team that I had met. I didn't know anybody else. I needed to know whether I was okay to get on that plane. I described my cough and my concern. She said that she couldn't tell what my cough was over the phone. If it was concerning me, I could go to student health or the emergency room to have it evaluated.

I pressed her. I don't remember what I said. I wanted to know whether such a cough was a symptom of metastasis in the lungs. I wanted to hear from her how unlikely that was. She couldn't tell me that. She insisted that I needed to use my best judgment about whether or not it needed, mostly for the sake of my sanity, to be dealt with immediately. I had plans that afternoon and packing to do. I didn't want to deal with it immediately. I just didn't want to foolishly jeopardize myself because I had “better” things to do. I wanted her to tell me either that it was dangerous to leave it be until my already scheduled appointment or that it wasn't. She wouldn't. She really couldn't. She couldn't decide that over the phone, and she wasn't the doctor to see about it. It was up to me to decide.

In the process of this conversation, she unfortunately cut me off at just the wrong time, though I'm sure she didn't intend to. There was a moment when I was trying to assume out loud: A week won't make any difference, right? But I had interrupted her to say it, and she stopped me to finish her sentence, and I withered. I don't think that she was wrong, or even unkind. She gave me lots of time whenever we talked, even at the end of the day on that Friday, but her answer didn't waiver and it wasn't what I wanted.

I got off the phone. I was alone in the house at the time—tears in my eyes, rock in my stomach, lead on my chest. I was so frustrated. It's difficult to describe why this was my darkest moment so far and even up to now, many weeks and two rounds of chemo later. I didn't cry when I found the mass, got sent for testing, heard I needed a biopsy, even though everyone in the place was hugging me like I ought to be very upset. I wasn't. It was just what needed doing. I didn't cry when I got the results. Okay, I have cancer. What do we do about it? The answer was wait and see. Wait and see how bad it is. Well, waiting for this was hard—really hard!—and I had only been doing it for about 26 hours. Now I had this sudden symptom of I didn't know what, and how was I supposed to know whether it was important? But there it was. Was I going to spend my whole evening in the emergency room or possibly cancel my trip, just to put a quicker end to this insufferable waiting?

But I was starting to regain some clarity. My pained reaction to the timing of the radiologist's interruption made me understand what I really cared about: Would a week make any difference? If I was seen that night, and they told me the worst, would they rush me into...somewhere right away? Or would they say, Come discuss it at your surgical consult. In two weeks. Now go on vacation. I didn't want to ruin my Friday for that.

I got brave. I looked past being a bother, not without difficulty, and I called the surgeon's office. I hadn't met them yet, but I had my appointment so they had my name. I also had my new question. Not, What is this cough? But, If this cough is cancer in my lungs—which, by the way, I realize is highly unlikely—would I need to be seen sooner than currently planned? They, too, as is rightly typical in the medical field, hesitated to give me too much assurance over the phone. But they ultimately said it probably wouldn't change much, though they could see me earlier if I really wanted them to. Once again, it was left up to me.

The second conversation was enough to calm me down. I had asked what I really wanted to know, and the consistency of their answer to the radiologist's actually helped me reason through just what kind of crisis this was going to be for me.

This is what I figured out: If it's not going to matter for two weeks, then I don't really want to know until then. I want to have a nice Friday and go to California. If getting a cough were really on the list of top five things one should be instantly worried about after a diagnosis such as mine, they would have said to come in. If they were worried about rapid progression or the state of metastasis, they wouldn't have said that I was free to go. Most importantly: It probably wasn't related and, anyway, they have emergency rooms in California (although, admittedly, fewer than they used to). If something drastically interesting came of this stupid cough, I was perfectly free and able to get a chest x-ray there.

It was immensely comforting to realize that I had some measure of control over the situation, even though I wouldn't be at home. I wouldn't sabotage or relinquish my ability to deal with it by going anywhere. It has been at least as helpful for me to realize the places where I can exert some control, because I have so little of it, as it has been to admit where I cannot, so I can let go of it.

So concluded my most emotionally difficult hour to date. It seems small to describe it, compared to the initial diagnosis, for example. But it was the most concentrated feeling of helplessness I have felt so far in relation to this process, the moment I first hung up that phone. On the other hand, I realized through it something about how to reason through a situation wherein medical expertise comes second to my own instincts. A scary prospect to someone new to her condition, but in fact not at all uncommon and often very necessary.

The following day brought a much more comedic lesson on how not to see cancer in every twinge and pain in the first place! I'm telling you: It was a very long week. Part Two coming soon!

From discovery to diagnosis

I include below the text of the mass email that delivered the news of my situation to many of my close friends and colleagues.  I realized through later conversation that I hadn't been clear about just how recent all this had been, and how fast it had happened, so I add some detail on the timeline here.

I discovered the mass totally by accident in the shower on Saturday, June 25 of this year.  I made an appointment with student health for an evaluation on Monday.  They sent me for a mammogram and ultrasound on Tuesday, after which I was informed that a biopsy was recommended and they could fit me in that afternoon.  I don't think this urgency was panic-driven so much as they wanted me to heal before I flew to California in just a few days.  The diagnosis came in that Thursday, July 30.  This email went out Friday, July 1.  I left on my week's vacation to visit family and friends, which now had a whole new feeling to it, early in the morning on Saturday, July 2.  It was a long week.  And I was worried about that altered vacation, but it turned out to be exceptionally wonderful and I'm really glad I went.

The diagnosis was not, by Thursday, shocking--at least, not in the complete sense of the word.  On Tuesday, I had paraphrased the radiologist's explanation of what she saw as follows:  "So it's probably cancer, but it might not be."  She thought that summed it up pretty well.  I was not expecting good news.  You would think that this would be the time to be hopeful, but I somehow knew otherwise.  I think I was preparing myself for the worst.  You don't want to spend a great deal of energy convincing yourself you don't have cancer and then learn otherwise.  Well, maybe some people do, and that's fine.  But I'd rather get blown away by good news than bad.  This was different for some reason than dealing with the cancer itself.  About that I have been almost incurably optimistic.  The outcome of treatment is far off, unpredictable, to some extent controllable.  But between test and diagnosis, I either had cancer or I didn't.  I couldn't change that by hoping, and so I just focused on accepting whatever news there would be.  And I'm glad I did.  The next phase was more difficult.

Enough of hindsight.  The email both tells the story as it unfolded to those who don't already know, and shows my early reflections on my situation.  For the sake of those who are just finding out about this, I should skip ahead enough to say that treatment is going generally well and there's more to say on that later.  I'm just catching you up on what has gone before, and there's a bit of a backlog since I put this off for so long.  So stay tuned.  Apologies to everyone, actually, for the aforementioned backlog.  There is a flurry of posts on the way, though I can't say at what rate.  Things will calm down once I've shared not only the email history but a couple of other stories that I have in mind.

Thanks to everyone for their continued good wishes!

---------------------------------------

Dear friends,

I have difficult news to share.  It will eventually hit facebook and such, but I wanted you to know from me first.  Please forgive the relative 21st century impersonal email.  I hope you'll understand that a few emails save me many repeated difficult conversations...

This week I was diagnosed with invasive ductal carcinoma, the most common form of breast cancer.  I know it is hard to believe--almost impossible, really--but it is true, nonetheless.  I'm sure many of you will have questions, so I'll tell you pretty much everything.  Sorry to those for whom this is too much information--you can skip this paragraph and the next!  :)  It happened very quickly:  I accidentally came across a sizable mass, a flattish disc about an inch in diameter, in my left breast.  I went to my care provider and a second, smaller lump was found in my armpit.  They sent me for a mammogram and ultrasound, the results of which led to a biopsy, and the results of that came back yesterday.  The mass and the lymph node, which is what the thing in my armpit is, both tested positive for cancer. 

This is as far as things have come.  What is next?  They are performing further tests on the cells they have to determine more about the type of cancer it is--whether it is an estrogen-receptive cancer, which is treated with hormone therapy, and/or what kinds of chemotherapy it might best respond to.  I have a consultation with a surgeon on July 14, when there will be further examination and discussion about what kind of surgery and other therapy--hormones, radiation, chemotherapy--is appropriate for me.  When the surgery happens, they will likely take out and dissect a certain number of lymph nodes to determine the extent of the cancer.  Perhaps I will have other imaging to determine whether the cancer has metastasized to distant organs or bones.  This is not always necessary.  The extent of the cancer will determine the "stage" of the disease.  I don't know yet the impact this will have on work, etc.  More will become clear shortly.

I am in good spirits, but will feel "better" when we know for certain where the bad news stops and the treatment begins.  It is a roller coaster, and scary, but I am very much alive and just dealing with the information as it is as I have it, and trying--mostly successfully--not to get wrapped up in disturbing fantasies.  It's useless and anxiety-producing to make up sad scenarios.  The present moment is what matters.  I am a practical and stubborn person.  I will do whatever has to be done.  I have also recently invested time and energy into a new meditation practice--a mindfulness which I *was* cultivating for the sake of memory, focus, and emotional stability to cope with the stress of grad school.  Now I hope that it helps keep me positive, and patient with reality during an exponentially more stressful time.

The course ahead will be difficult, but I feel fortunate in so many ways--for one who has to deal with such a thing.  I know I can rely on the love and unconditional support of family and friends.  I'm insured.  The treatment center I chose originally with only finances in mind--the Breast Care Center at UVA--so far seems a great place to be.  They are very kind, and I heard from several people there that their radiologists, surgeons, oncologists are all in-house, specialize specifically in breast care, work collaboratively on every case, communicate with and trust one another.  They are also all professors of medicine, up on the latest research.  This is the best known breast cancer--unfortunately, that means it's common, but it also means there is a lot of data behind the protocols.

Everyone will react to this a little differently.  If you are wondering what you should do, just do whatever it is you feel you need to do.  If you want to write or call, you can, but don't feel that you have to.  I'm travelling this next week and will receive messages but will not necessarily be able to easily respond to them.  I know your thoughts will be with me no matter what.  I just want it to be something everyone knows, rather than discovers slowly through hearsay and whispers.  Feel free to talk about it openly, and I'm sorry if I have inadvertently overlooked anyone.

So, that is all.  :)  I hope this reaches everyone happy and *healthy*.  Check your breasts today, etc.!
Thank you all, and much love,
Jennifer

By way of introduction...

Greetings,

I've decided to start this website as a central place where those who wish to can receive updates on my condition, my experience, and my general state of being during my treatment for breast cancer.  I debated whether to use this more generic, public forum or a blog site designed for people going through major health events, and I went in the end with less privacy and more flexibility.  Having cancer is a deeply personal experience, but at the same time connects me to a startlingly vast community of others living with cancer and to their loved ones.  I am happy if anyone feels that my experience is worth sharing with people they know, so my posts are email-able and anyone can view or comment on them.  But, to avoid a flood of random traffic, they are not facebook post-able and the like.  It would be wonderful if readers would respect the intent behind this, and not post links to this site in indescriminately public places.

There are three ways that I know of to receive notification of new posts:  subscribing to the RSS feed by clicking 'subscribe' below (but it's always been a bit of a mystery to me how these work); joining the site by clicking (go figure) 'join this site' to the right, which requires a google, yahoo, twitter, aim, netlog, or openid account (if you don't have any of these it's very simple to create a google account); or if you don't wish to log in, you can just let me know by email that you'd like to sign up, and I can put you on a list of folks who automatically get emails when I post something.  Or, of course, you can just check in whenever you like.

Anyone can comment, so you don't have to be logged in to do so, and you can always put your name in your post even if the profile selected is 'anonymous'.  Also, although this takes the place of mass emails on the outgoing end, if you prefer to respond to anything privately, I welcome you to send me an email anytime.  I've gotten a lot of comfort and strength from those of you who have written me so far. 

Well, that's it as far as how things work, I guess.  I hope you'll forgive my completely novice webmistress skills as I figure out how I want this thing to look and such.  Also, because I'm neurotic that way, the first couple of posts here will likely be the full texts of my first two mass email updates, for the sake of completeness and for the sake of getting anyone who didn't receive those current on the situation.

More soon!
Much love,
Jennifer