Forward

I'm done.  I'm done with the painful, sickening treatments for the second time.  I've fought breast cancer twice, and for the time being I've won.  Again.

I think it will be a few more days before the full magnitude of these statements sink in.  I'm done!!!

The appointment today was perfect.  Dr. Surgical Oncologist snipped my stitches and pulled out my J-P drains.  Whew!  It wasn't quite as ticklish as last time.  I think it was due to the fact that the drains were shorter--she said that she trims the length of the drain tubes based on how many lymph nodes she removes.  Since I only lost two lymph nodes, the drains were relatively short, perhaps about 6-8 inches each.  I had gotten so accustomed to having the drains in that all day I've been having to re-learn how to live without them.  No, I don't have to clutch my elbow to my side and lift slightly to relieve the pressure on the stitches.  No, I don't have to make sure I'm not slamming them in the car door.  No, I don't have to avoid laying on them while I'm sleeping.  Oh!  Sleep!  It will be so sweet tonight!

She also gave me the results of the Tumor Board's discussion.  Based on the favorable pathology results, the consensus is that I do not need radiation for either my lymph nodes or my lungs.  Huzzah!  They do still recommend that I remain on Herceptin + Pertuzumab "indefinitely".  That's fine with me.  I'm so lucky that there is something to help control my disease.

I still have so much recovery ahead of me, but I'm thrilled to know that it won't be undone for awhile.  For the first time in months my recovery will be exclusively forward.  No backward steps due to do further treatments.  Just forward.    

Almost perfect news, and 100 miles to nowhere

Dr. Surgical Oncologist's office called with what she described as "good news" and "almost perfect news" regarding the pathology of my breast cancer.  The good news is that six months of chemotherapy worked as it should; a little bit of ductal carcinoma in situ (DCIS) remained in the breast tissue, but it was no longer invasive.  This means that it wasn't trying to grow out from its location.  The other way that I took this as good news is that the remaining DCIS seems to support my decision to get a mastectomy.  No doctor has said that, but my gut is taking this at further evidence of its trustworthiness.

The almost perfect news is that the pathology confirmed that there was no cancer in my lymph nodes.  The reason this is not fully perfect is that they did find a few cancer cells in the duct on the way to the lymph nodes.  I have no idea what this means.  Was my cancer spitting off cancer cells until the moment it was cut out of me?  Or had these cells split off from the cancer long ago and decided to hang out in this bodily hallway?  But it doesn't matter because the lymph nodes were clear, which is the most important result.

I'll see Dr. Surgical Oncologist on Tuesday when I get my drains removed, and I'll get clarification on the significance of all of the pathology then.  Also, the surgical team is/was to present my case to the Tumor Board (again) today, so it will be interesting to hear what everyone at the institution thinks about my case.  I have my fingers crossed for no plot twists, such as radiation.  I'm ready to close the case, at least for now.

My recovery is continuing in a positive direction.  The only major development is that I have a hot, itchy rash that covers my chest wall surrounding the surgical sites.  I'm not terribly surprised to have a rash, since rashes have been one of the main sidebars of my chemotherapy this time around.  But I am terribly uncomfortable.  I have been taking all sorts of allergy medicines to try to control the rash:  benadryl, zyrtec, zantac, allegra.  The only thing that has been moderately effective is an anti-inflammatory ointment, but it is not a cure.  It prevents the rash from bubbling and oozing (yay!), but it allows it to maintain a hot and itchy state (boo!).  My second tool for getting relief is ice.  I ice the chest wall all day long.

Additional relief came this week in the form of some amazing news.  Two of my dear friends are organizing and riding 100 miles to nowhere, on their bicycles, around my block.  They are doing this on Oct. 18th to raise awareness of inflammatory breast cancer and to raise funds for my daughters.  To read more about their event and to find out how to participate or donate, please check out "Steven's" blog here, or "Norman's" blog here.

The kindnesses, generosity, and support continue to amaze me and fill me with gratitude.  Can't wait to hug you, Steven and Norman.          

Clear margins

Today was herceptin day.  Dr. Oncologist checked out my wound et al. and gave me some helpful information regarding the drainage tubes.  She said that when they get to the point where they are draining less than 20 milliliters combined in 24 hours, then they can come out.  That gives me a threshold to shoot for to get them out before next Friday's appointment in Iowa City.  Alternatively, this information will help me be patient for next Friday's appointment because my current drainage has been holding steady between 30 and 40 milliliters.  Regardless of when and where I get them out, it will not be soon enough, and so I need to steel myself for more days with drainage tubes.

We also went over the pathology report from my mastectomy.  I'll tell you up front that it was neither the worst nor the best news, but I found it to be on the good side of medium news.  I think I already mentioned that the pathology of the six random sites biopsied from my remaining skin (still attached to me) showed no signs of cancer.  This is excellent news.  The best possible pathology of the breast, then, would have also been to show no signs of cancer.  Not true.  There were a couple of tiny signs of cancer, they showed signs of treatment (thank you, chemotherapy), and they were a small distance away from the edge of what was removed.  I think this is what they called "clear margins" in the report--the cancer was surgically removed without evidence that it spread beyond the area that was removed.  Like me, I'm sure you would have rather heard that there was no evidence of cancer in the breast, but it could have been much worse.  Worse news would have been unclear margins, or increased cancer, or different cancer.  Also examined were five lymph nodes (I was under the impression that they took much more than that, so I will inquire with my surgeon about this).  4/5 were clear, and 1/5 had a teeny tiny tumor that measured at 2 millimeters.  Glad that's gone, no matter how small.

So you see, although it might have been better to hear them say, "no signs of cancer", the signs were weak and it is tempting to imagine that all of the cancer was removed.  Besides, I will continue to use my mind to quarantine any remaining cancer, I still have 6 months of herceptin therapy, and we still have radiation in our arsenal.  I will meet my radiation oncologist next Tuesday.

I have been so matter-of-fact in my recent posts that perhaps it is difficult for you to divine how I am holding up.  I think I am holding up quite well, and I am indeed handling things with a matter-of-fact approach.  I have not yet had an emotional breakdown over the loss of the breast, or over any of the milieu of issues that I am currently confronting.  Unlike those breast cancer fighters who face surgery as treatment number one, I had 18+ weeks to learn to hate my breast.  I was eager to be rid of it by the time surgery actually happened.  My scar will be lovely.  Regarding the other issues, I am mostly just tired of being laid up, and tired period.  I am eager to be strong again.  I am eager to demonstrate my intellectual prowess again.  I am eager to play at the playground again.  But these things tend not to make me sad, because I will regain them in time.  Instead of sorrow I feel impatience, which makes me want to sleep--the speediest way I know of to get to the future healthy me.

Hey, my arm doesn't hurt as much as it usually does after a blog post.  It's exciting to finally have positive evidence of recovery.

Dad was right

There was good news in my future, and now it is in my past:  the results of the cytokeratin staining are negative!!!!  Woo-hoo!!!!  There is no evidence of a tumor in my T9 vertebral body.  Also, now that I am personally reading the report, I see that the atypical cells were "rare" in my sample.  That is promising, it seems.  So, what do we do now?  We keep an eye on T9.  Another PET scan in 3 months.  Life goes on (albeit with some temporary back pain--turns out it's not so bad).

More good news regarding my platelet magic:  the solution to the riddle is that my body is producing antibodies to heparin, and these antibodies also attack platelets.  Heparin is a substance that gets injected into my port after every use to prevent blood clots in the port.  It is not surprising that after 4 months of continued exposure to heparin my body is producing antibodies against it.  The bummer is that these antibodies apparently also attack platelets, which I do not fully understand but certainly is not cool.  Solution:  no more heparin in my port.  Instead my port will be flushed with saline after every use.  This might put me at an increased risk for blood clots, but a girl can't live without her platelets.  By ceasing exposure to heparin, my body should stop producing anti-heparin antibodies, and my platelets should live in peace.  In the short term, Dr. Surgeon says she only needs my platelets to be at 50, so I should be good for Monday's surgery.  We'll check the platelets again tomorrow.

Regarding the contaminated platelets, it seems that I have emerged unscathed.  I asked how I was able to receive contaminated platelets, what part of the pipeline broke down.  Dr. Oncologist said that platelets have a greater risk of being contaminated than red blood cells due to extra processing, and that bacterial contamination is detected by culturing (think Petri plates).  Usually these bacteria grow up within a certain amount of time (probably 2 days), but the bacteria that were contaminating my bag of platelets grew slower and did not show their ugly faces until the platelets were already administered.  Hence the contamination being missed, and possibly hence me not being sick right now.  This last part is my own addition, and my thinking is that my body has been able to fight off these slow-growing bacteria that were not adapted to my Wonder Woman bloodstream.  Considering the incredibly forward technology that I have at my fingertips everyday at work, it continues to amaze me that such low-tech methodologies persist in medicine.  Said another way, I can't believe that we are still culturing to detect bacterial contamination.  But I digress...

Last but not least, my cold:  pretty sure it's turned into a mild sinus infection.  We're skipping the CT scan this time and going straight to antibiotics.  Gotta get this knocked out before Monday.  I don't want anything to delay Monday's main event.  The red spot that chemotherapy chased away is starting to come back a little bit, but you can only see it after a hot shower.  Nonetheless, I'm ready to no longer give this spot access to my body.  I have mentally quarantined it, but I need some surgical assistance.

NOW my back hurts.  Time to give it a break.  Thank you for being with me today.  Thank you for being with me this week.  Hardest week since October, to be sure.    

Limbo land

I thought there wasn't supposed to be a limbo land here, but I'm in it.  The results of my spine biopsy returned "irregular" cells, but so far nothing more conclusive than that.  Nothing obviously tumorish.  There is one more test to be done, a cytokeratin staining, and we're supposed to have those results tomorrow.  Positive cytokeratin staining means it's a tumor, and no cytokeratin staining means it's not a tumor.  Obviously we're hoping for no staining, but then the result of the biopsy remains irregular and inconclusive.  The plan for the future would be to keep an eye on it.  Obviously this "answer" would be less than satisfactory, but much much much much better than the alternative.

Stress has been high, so I took a nap this afternoon.  During said nap I dreamt about my possible T9 vertebral tumor.  In my dream I realized that I never had a tumor, not even in my breast.  I questioned what metastatic INFLAMMATORY breast cancer would look like--possibly irregular cells that lack ordinary tumor markers?  I will pursue this line of questioning with Dr. Oncologist when I next see her, possibly tomorrow.    

Intriguingly, Dr. O is more concerned about my platelet magic than T9.  She thinks my platelets should be higher by now (they were 87 today, possibly in part due to the transfusion).  She is worried that it might mean that I have bad bone marrow, and is thinking about sampling my bone marrow (which would be a nice control for the T9 sample, anyway).  I told her that I'd like to wait on this bone marrow sampling business.  I told her that today is the day I usually would have received the hard chemo, and that I have a cold, and let's just give my bone marrow time to recoup.  You all have seen the graphs of my amazing blood cell recovery rates.  I think that in the case of the platelets, we proceeded with hard chemo despite the fact that the platelets were lower than the cut-off, and now it's just going to take a bit longer for me to catch them up.  Viruses can sometimes cause decreased platelets, too, and I have been fighting a cold for several days now.  So I am all over the wait and see course of action when it comes to my platelets.  Also, we're still waiting for the results of various platelet tests; why would we put me through another bone marrow sampling before we see those results?  That's right, we shouldn't.

I'll take limbo land over tumor land any day.

Time to do something fun with the ladies.

Prologue

About 2 months before Eleanor was born, my midwife noticed a small firm area in my left breast.  She made an appointment with a surgeon, as a precaution.  I had an ultrasound, and no one reported any abnormalities, but I was told to come back in a month if anything changed.  Well, I got a bit distracted with Eleanor and so I skipped that directive.  However, instead of going away, the area of firmness increased.  It felt to me, to the midwives, to the lactation consultants, to the surgeon like a breastfeeding-related problem, such as a plugged duct.  For months I applied heat or ice, took ibuprofen or lecithin, massaged or expressed, but nothing worked.  In Feb. 2010 I noticed a redness starting to appear.  In to the surgeon I went, and despite my inability to relieve this "breastfeeding" problem I was again sent away.  In May, with more and new redness, I again brought myself to the surgeon.  He touched the lump briefly with two fingers, told me some surgical things he could do to relieve a plugged duct, actually said that it wasn't cancer, and sent me away.  I consulted with the lactation experts again, and they suggested ultrasound therapy to relieve a possible galactocyle.  I tried that twice in July, and it did seem to loosen things up for a few days, but the firmness never went away.

Despite weaning Eleanor this summer, my "breastfeeding" problem got worse and I started to get nervous.  I dumped my surgeon and made an appointment with a different one in August.  My new and wonderful surgeon appropriately puzzled and scowled at my breast.  But he had no history with me, so he told me to give it another month to drain of milk and then see him again.  He patted my leg and promised to help me get to the bottom of this.  That follow-up was ~2 weeks ago, and he decided to get another ultrasound to see if anything had changed to suddenly allow us to see the problem.  That ultrasound was Tue. Oct. 19th.  I actually got to talk to the radiologist, and this conversation made everything clear for me.  Although I had long thought that I could see a difference between the ultrasound of my left and right breast (I must have had 4 ultrasounds on it by now), the radiologist said, "yea, but there's no focal point".  I interpreted this as meaning that although he agreed that my left breast didn't look normal on ultrasound there was no focal point for him to diagnose or tell the surgeon to biopsy.  How long has this been going on?  How long has my breast looked abnormal on ultrasound but without a focal point to diagnose?  And now that I know that it's inflammatory breast cancer, what does THAT look like on ultrasound?  Why weren't other, more appropriate tests used to rule this out?  But I digress...

The radiologist called my surgeon, who decided to do a quick mammogram and see that result.  After the mammogram was my appointment with my surgeon.  He said that there were some calcifications in my left breast according to the mammogram, but he was still puzzling at the problem because there were no clear answers (apparently).  I asked him what we should do.  He said if I was his sister, he would do a biopsy.  So that's what we did.  I directed him to the one spot that I consider to be the focal point because it is near where it all started and it is a tiny bit sore when pushed.  He took out two--pieces?  chunks?  samples?  Four stitches later, he and the nurse told me the tissue looked great, and let's have a follow-up on Thursday to discuss the pathology results.

Now it's Wednesday, and we're all living our normal lives.  At 1:30 my surgeon's nurse calls and says that I have inflammatory breast cancer, get a babysitter, and go with my husband (Ian) to the oncologist's office.  She's super booked, but wait in the waiting room until she can squeeze me in.  We followed those horrifying directions, and eventually spent over an hour with my new oncologist.  She is great.  She explained what we know, which is that I have inflammatory breast cancer, and what we don't know, which is what receptors it has and if it has spread.  She lays out for me the staging that needs to happen to find answers to the things we don't know: brain MRI, breast MRI, bone scan x 2, PET scan, EKG, Echo cardiogram, genetic testing, and lots of blood tests.  Some of these are to determine if the cancer has spread, some are to determine if I'm healthy enough for chemotherapy.  In our daze, Ian and I walk out to the receptionist to begin making the first of seemingly hundreds of appointments.

Thursday.  7:20 am.  My brother arrives with breakfast-making supplies.  My sister arrives and walks me to my first appointment.  My other sister meets us at the hospital.  First stop, blood draw.  Second stop, genetic counselor.  Third stop, MRI.  Fourth stop, second MRI.  (in the middle of my first MRI, some electricians discovered a puddle of water in the MRI electrical room.  We had to stop the scan, but I already had the contrast dye in me, so the technician walked me to the neighboring clinic to finish up in their machine.)  Fifth stop, another blood draw for a test that was requested after I already had the first blood draw.  Intermission:  home for lunch, at which point my dad shows up with fried cheese curds.  Sixth stop, bone density scan.  Seventh stop, EKG and Echo.  End scene.

I had no tests scheduled for Friday, but I have a few more on Monday and Tuesday.  Tuesday is D-day because I meet with the oncologist at 3:30 to summarize the results and come up with a plan.  I have no preliminary results to report because I have met with no one except the technicians, although a radiologist did call the house and told me to feel free to call him if I have any questions.

Um, thanks, unnamed radiologist, but you have no idea.