Monday, December 5, 2011

Conversation + Rumination

Friday I go back for my fifth cycle of chemo, which means that I've made it to my "good" week, although this entire cycle has been better than any before it.  I'm not sure if it's the extra fluids I'm getting during the first week or the beta blocker they've prescribed to help control my heart rate, and I don't really care.  I hope for two more cycles like this one, where I can be active after only a few days of misery -- then I'll call it a wrap and put a bow on it, because I will be done.

As in, bye-bye chemo, hello surgery.

And radiation.

And three-week cycles of Herceptin until next September.

And then hormone suppression drugs for five years, but that's way down the road right now.  Practically in another lifetime.

Although I've been taking this whole cancer process one step at a time, I mentioned in my last post that speaking with the genetic counselor meant I had to take a peek into that surgery box before I was quite ready.  Maybe that was good for me, because it pushed me to ask some hard questions of my oncologist at my last exam.

Don't get me wrong, I have questions at every exam, and I always feel like my doctor listens to what I ask and answers as truthfully as she can.  She has the best bed-side manner of any doctor I've ever had, and maybe that comes with her field.  Or maybe it comes with working specifically with breast cancer patients, and getting to develop her skills to a pretty specific audience.  Whatever the case, I actually look forward to seeing her.  She was even a good sport when I asked her if I could take a picture of us together for the blog, and offered to wait while I changed out of my gown.  I know it's a pretty small gesture, but I really appreciated the kindness of it, even if I didn't take her up on the offer.  She has other patients who probably don't like to be kept waiting, and my flannel shirt was pretty ugly that day anyway.

See how cool Dr. Levy is?  I love that scarf she's wearing -- I think it would go very well with my purple "hair."  And trust me, the brown gown is at least as attractive as the ugly flannel shirt I wore that day.

Several people have asked me about the stage of my tumor.  I haven't had an answer to give before now because of the timing of all the early tests and appointments.  The way everything fell in the beginning meant that I met my doctors before my PET scan, and they needed the results from that test before they could put me in a staging category because satellite growths elsewhere in the body make a difference.

I know it's pessimistic of me, but I sort of assumed the worst when it came to what the PET scan would say, and I was relieved to be wrong.  There were no noticeable metastases of the breast cancer anywhere else (other than in the right axillary lymph nodes, which they already knew), and I was so happy to get that news that I didn't want to push my luck.  I just wanted to take the good results in stride and walk with that for a while.  But last exam, I decided I was ready to hear what label my doctors had applied to me and my cancer.

My tumor was at stage 2B -- size of tumor and the involvement of lymph nodes combined to put me in that category.  But I want to stress that while this isn't nearly as bad as I had thought it might be, it could be even better when they make their final determination.  That won't happen until I've had surgery and they've sliced and diced all the tissue to determine how big the tumor was on removal day.  My oncologist also told me that it's possible that the chemo could totally shrink my tumor away -- that happens in about 20-30% of all cases, and those women have the best prognosis.

I'm not holding my breath, but I'm hopeful that I could be one of those women.

Do you see all that crappy baby hair that is still attached to my head?  I so wish all my hair had fallen out, but it looks like I'm stuck with what's left of my mohawk until hair starts growing back in.  I take this as a sign that my hair will be as straight and limp as always.  *sigh*  ;)
I know that some of you will read this and think what great news, and I am totally in that camp.  So much so that I was emboldened by her response, and took a chance with another scary question.  I wanted to know how accurate the PET scan was in predicting recurrence, in my oncologist's experience.

She didn't give me any statistics or percentages on that, although that's sort of what I expected. Instead she explained that it takes about a million cells of something to show up on a PET scan, so I could have tens of thousands of bad cells somewhere and they could fly under the radar.  But that's what the chemo/Herceptin is for, and it's pretty obvious to me that those drugs are working, based on my tumor shrinkage.  You have to figure that if those drugs are karate-chopping the hell out of the cancer cells and whittling the tumor down to half its size on its home turf after only three cycles, it must be doing something to any ne'er-do-wells that have been hitchhiking to other parts of my body.  So take that cancer, I've got too much going for me to let you win.

FYI, a million cells is about the size of a pinhead.  Isn't that amazing?

So staging was better than I expected and PET scan as predictor is less important that I thought.  Maybe I should have stopped there, but there's one other aspect of this tumor that I've been wondering about, and I couldn't resist asking about it as well.

I wanted to know how long I've had it -- not so I could rail about how shitty some of my medical care has been (although that would be true and each doctor's visit here just drives that home), but for my own peace of mind.  I saw my ob/gyn in March, and neither she nor I felt anything out of the ordinary at that time.  But when I first met with the surgeon who will do my mastectomy, she told me that these tumors are measured in terms of months, not weeks.  So I was curious.  Was I just remiss?  Do breast exams by the gynecologist serve any sort of purpose at all??

My oncologist's response caught me off guard.

I have had this tumor for years.

I'd been figuring that I've had it since last year based on some weirdness I had with hormonal stuff.  I won't bore you with the details, but November and December of 2010 brought on hormonal strangeness that I've never had to deal with.  I figured I was just perimenopausal until I found out I had breast cancer, and then I started to suspect that maybe that strangeness was related to the tumor.  Maybe it was, and my body was just throwing up warning flags in weird ways.

Whatever the case, the tumor, while aggressive, was a slow-grower in the beginning, and probably only  picked up steam about six months ago.  Sort of like compound interest, the cancer cells hit that sweet spot where they suddenly appeared to reproduce a lot more rapidly because they'd reproduced enough to accelerate the growth exponentially.  How odd to think that I've been walking around with a time bomb in my right breast for years and it only got big enough this summer for me to notice.

I want to stress that because my mom was diagnosed with breast cancer at age 40, I have been getting mammograms every year or every other year since I was 35.  Part of the problem with detection in someone my age is the relative density of breast tissue.  Gravity hasn't done its thing to me yet, so my tissue was too dense and my tumor was too small to detect anything at my last mammogram.

It's taken a bit of time for me to reach a point where I could write about this.  All this information, coming so soon after my talk with the genetic counselor, was a lot for me to process.  Now that I've finally wrapped my head around it, though, I feel like I can move forward.  While I have been hopeful and positive since my first visit with my oncologist, I have even greater expectations of this cancer just being a rough patch and not a way of life for me from now on.

One last thing that I want to mention that my doctor shared with me because it might matter for some of you as well.  My vitamin D level was extremely low, maybe around half of what the low end of the acceptable range is.  My oncologist said that she routinely has all her patients checked for vitamin D deficiency because around 80% of them are in the same boat as I am.  No corresponding link has been found between a vitamin D deficiency and cancer, but it's a common enough occurrence to suggest that the two might be related.

Whew!  That's a lot of hard-core info for one blog post.  Maybe next time I'll blog about my quilting projects or my family tree, or maybe I'll actually get my camera out and take some serious photos for a change.  I don't want anyone to think I'm only a cancer victim, because believe it or not, I actually do other things besides visiting doctors and getting shot up full of toxic chemicals.  Any votes for a change of topic?  :)


Penny said...

So should women with dense breast tissue push for breast mri or ultrasound if they have history?

otterdaughter said...

Honey, this is _your_ blog. You post about whatever the heck you want to! You could photograph and write about navel lint and nobody has the right to complain. :)

Beezus said...

@Penny -- I'm not sure what they recommend. I just know that the doctor and I discussed the current debate on whether mammograms for women under 40 were even worth it. I'll ask her on Friday, but my suspicion is that she will recommend seeing someone who specializes in high-risk patients, and that ultrasound is the way to go. I really can't see insurance forking over the dough for the MRI without suspicious findings from a cheaper test.

Beezus said...

@otterdaughter -- Thanks! I always think the same thing when others talk about how they feel compelled to put up more tutorials, more giveaways, etc., to keep their followers. Blogging is as much about the writer as the audience, isn't it? :)

Anonymous said...

Wow, love the hat. Hey I'm still working on my thesis and will probably need some help. Maria could you perhaps volunteer for that. Also, I would really love to read your thesis.

Beezus said...

Candy, I would love to read your thesis! And you can actually check mine out at the library. How cool is that??