Receding necklines and plunging hairlines

It's off!  I'm done!

I've been awake for four hours.  I ate Pita Pit for dinner.  (My crazy-thoughtful friends printed off a packet of menus for restaurants that deliver to the hospital so that this vegetarian doesn't have to eat coleslaw the whole time.)  I just took a walk around the "block".  My pain is totally managed by Tylenol 3.  I THINK I'm "with it", but I'm pretty sure I'm not totally "with it".  Evidence for this is the crazy amount of typos I am committing and fixing, and the fact that it has taken me 10 minutes to compose this post thus far.  I am usually much speedier than this.  Zoom zoom!  ha ha ha

I was super excited about this post title, but everyone I've run it by has needed an explanation.  See, with only one breast I probably won't be wearing any low-cut shirts any more.  Even if I do, they won't achieve the proper function of showing cleavage, you know?  Plus, I'm currently wearing this enormous sports bra contraption to hold all of the bandages in place, and it zips up in the front, practically to my neck.  That's the "receding necklines".  In contrast, I see my hairlines as "plunging" because my head hair has finally grown in enough that I can see my hairline again.  No more forehead blending into bald head.  My new hair thus far is as dark as before, giving me a distinct hairline in the usual place, which is much lower on my forehead than my chemo stubble.  Hence, "plunging hairlines".  I thought it was a clever juxtaposition, and I've been pretty excited to make this post just for the sake of the title.  I'm hoping that someone laughed before they read the explanation.  :)  

So...not sure what else to say.  I'm sore, but I'm great.  Absolutely fabulous.  Oh, and did I tell you that the initial pathology of the breast skin looks good?  No initial evidence of abnormalities, although there are more tests to perform on the tissue and official results will come through Dr. Oncologist on Friday.  These biopsies from the remaining skin are important because inflammatory breast cancer lives in the skin, and so negative biopsy results from the skin surrounding the removed tissue give us hope for a cancer-free recovery.  It's too soon to celebrate, but this is a promising result that will allow us to breathe and sleep until Friday.  Also, no skin graft!  My surgeon must be wizard because she took a ton of skin and I thought for sure I'd need a graft.  It's definitely the small victories at this point.      

Yea, there's probably way more to say, but this is all I can do for now.  Smiling, check.  Pain managed, check.  Family here, check.  Blog posted, check.  My love to all of you!

Perspective

When I was diagnosed with cancer, I had nothing but dread for chemotherapy, surgery, and radiation.  I was filled with fear, but I have since learned that this fear was misplaced.  Where I feared pain, I should have feared the cancer itself.  Where I feared my own suffering, I should have feared the suffering of my children were I not to survive.  What caused this change in perspective?  Time.  Wisdom from fellow cancer patients imparted in the waiting room.  The possibility of a metastasis in T9.

I spent weeks dreading the mastectomy.  Now it is upon me and I am excited.  I no longer fear my own suffering, nor do I fear a life without a breast.  I am terribly ready to be separated from this ticking timebomb.  My imminent suffering will be brief relative to the life ahead that it will afford me.  Also, my amazing college friends got me a sweet hotel room for the night before (see right) that includes a linen upgrade.  Ooooh!       

I have also spent a lot of time disparaging my port, or "port" as I often referred to it.  I will no longer talk smack about the port.  This past week I really started to appreciate the significance of my port (see? now it's MY port and not THE port) and what it does for me.  I don't even want to know how many sticks I would have had for those platelet transfusions if I didn't have a port.  A dozen is certainly a conservative estimate.  Instead, they put a needle in my port at 4:30 pm, and that same needle stayed in comfortably and painlessly until after the spine biopsy the following day.  One needle, one stick, allowed my blood to be drawn at least 4 times, steroids and morphine to be administered at least 3 times, platelets to go in 4 times, and probably other things that I'm forgetting.  Sometimes I elect to use an arm if the port has been poked twice in a week already, but for the most part I have become an exclusive port fan.  Three cheers for ports!  

Finally, my hair is starting to grow back and I thought I'd reflect on being bald.  This is not something I particularly dreaded, and I don't think that my perspective has changed.  I would say that being bald is inconvenient sometimes because it complicates my body's temperature regulation.  I would also say that I miss my hair because it was kind of pretty and my girls liked to play with it.  The fun things about being bald are rubbing my hands on the stubble, putting on backpacks without catching my hair in the straps, not having the wispy static-electrified hairs in my face in the winter, and cooling off quickly after a hot flash.  But I am looking forward to the return of my hair, however it decides to grow in.   Please go here or use the photo link at the right to see more pics of my baldness in action.        

Poke tally:

port  23

right arm 9

tummy  6

left arm  6

left breast  1

superior vena cava 1

T9 vertebral body 1

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.    

Really?

Dr. Oncologist just called me at home to tell me that the last dose of platelets I received on Tuesday morning tested positive for Strep contamination.  This is the first time in 20 years that she has had a patient receive contaminated blood products.  I am to look out for fevers and chills, but she's thinking that since it's been over 24 hours with no symptoms I will probably be okay.

What else you got, universe?  BRING IT already!  Quit f***ing with me!!!

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.

I feel fancy

I'll save you a speed-reading skim by saying that I don't have any results yet.  However, the pathologist came into the room during the procedure and took the samples right away.  She and the radiologist think we'll have results this afternoon.

I wanted to let you all know that the spine biopsy is over and I am back in my room.  It is normally an outpatient procedure, but Dr. Oncologist wants me to eat a meal here before she sends me home.  Easiest thing I've done all day, to be sure.

I also wanted to tell you that the spine biopsy was no problemo.  I'm rockin' the morphine et al. and was awake the whole time.  I'm super with it, I just feel about 2-beers drunk and a little bit fancy.  I want to document this experience on the blog because I might not remember it in the future (thank you, morphine).

I was very brave and kept my nerves under control.  I laid down on a conveyor bed and slid in and out of the CT scanning machine a couple of times so that the radiologist could use the pictures to mark up my back with the exact position of the biopsy.  Then I slid out of the machine but remained on that conveyor bed, on my tummy, for the rest of the procedure (~another 30 minutes, less than 60 total minutes on the conveyor bed).  Dr. Radiologist was excellent:  very professional, very knowledgeable, and excellent bedside manners.  He told me what he was doing before every little thing, and every thing was indeed little:  little 5 mm incision, little 16 mm needle, little pressure while drilling through bone, little pain while aspirating bone marrow.  In addition to my oral goofy drugs, he did use a few levels of local anesthetic.  I would say there was only one time that my pain level raised above 2 (on a scale of 1 to 10, 10 being excruciating), and that pain was more surprising than anything.  His nurse was also excellent, and chatting with her and Dr. Rad was very helpful.  They complimented my positive demeanor, and I explained that I have learned how important it is to be patient to be a Patient.  I proceeded to sing the song of the same name from Elmo goes to the Doctor (sorry--not on youtube or google, but you can probably rent the DVD from your public library).  I think that got some chuckles.  The real laughs came, however, when the procedure was complete and he was pulling the needle out of my bone.  He was tugging very, very, hard for a full 30 seconds and simultaneously trying to talk about something.  He started panting as his exertion increased; I told him he didn't have to talk while he was working.  The nurse and tech cracked up.  

OMG, my food is here.   poke tally then I'm out:

"port"  22

right arm 7

tummy  6

left arm  6

left breast  1

superior vena cava 1

T9 vertebral body 1

Ta-da! My amazing disappearing platelet trick

Allow me to draw your attention to this bag of yellow, single-donor platelets I hold in my left hand.  These platelets are going to be eased by gravity into my port early Monday evening because as of Monday morning my platelets remain too low for the spine biopsy on Tuesday (today).  Watch as the platelet bag becomes empty, and watch as the nurse draws my blood to monitor my post-transfusion platelet level.  Wait for it, wait 30 minutes to discover my new platelet value, here comes my fancy trick <envision my magic sparkle jazz hands here>--ta-da!  My platelets are lower than before the transfusion!  Isn't that fancy?  Did I dazzle you with my magic, or did you miss it?  Here, let me do it again.  This time it is after midnight, and I pre-medicate with tylenol, benadryl, and a steroid to help protect the platelets.  Again, I present to you a bag of single-donor platelets hanging from a stainless steel hook.  Again we draw some blood to test for all sorts of goofy things:  antibodies against the platelets, some heparin-related disorder (this is the substance that is injected to hang out in my port when my port is not in use), some other crud, and platelet levels.  I wave my magic sparkle jazz hands and--ta-da!  My platelets again are lower than before!  I am so amazing.  But I'm not done yet, oh no.  Now it's 6 am and I will attempt a bag of multi-donor platelets.  I pre-medicate, the platelets infuse slowly, I release some blood, and...can I have it quiet in the audience, please?  <drumroll>  My platelets are up!  I guess I'm not a very good magician, but oh heavens am I relieved to be able to receive platelets and to have the spine biopsy today.

My platelets are still not to the threshold that my oncologist would like (100), but they are above the threshold the radiologist/spine surgeon would like (50).  I therefore received yet another bag of multi-donor platelets about an hour ago, and we'll send a sample of my blood to the lab any minute now.  Outlook is good for the spine biopsy today, probably early afternoon.  We are very curious about my amazing disappearing platelet trick, but because my body accepted the multi-donor platelets it is no longer an acute thing to worry about.

I spoke with the radiologist this morning, and here's a sketch of the procedure:  make me goofy with drugs but don't put me under, insert needle through the skin at T9 vertebral body using some window that is naturally present in the spine, manually drill a hole through a bit of bone, take a sample of marrow, wait for results (some results could come as early as today and as late as in 2 days).  As I've been verbalizing this week to geographically proximal folks, there's no middle ground for the results.  They will either be huge-sigh-of-relief results because I have a mild injury and T9 is simply healing, or they will be sob-on-a-loved-one's-shoulder results because I have a tumor in T9 that managed to grow DURING general mitotic inhibitor chemotherapy.  Either way, I'm sure I will curse.  The word choice will be dictated by the nature of the news.

I am surprisingly calm, possibly because I am hungry and dehydrated (nothing to eat or drink since midnight).  I am positively delighted to be moving forward and getting answers regarding T9.  This platelet thing has been inconvenient at worst, painless at best.  My recovery after the biopsy is supposed to be only 3-4 hours, so I should be home tonight.  If I'm lucid, I'll post and tell you how it went, otherwise I'll wait until I have some results to share.  Hopefully the good kind.