"2319, 2319!"

I'm doing great.  I've worked all three days so far this week, and I have probably 80% range of motion in my left shoulder.  Still pretty sore, but it's coming along.  I'm even learning to ignore the nerve pain.  Forward progress is tangible.

Now here's the crud that I haven't mentioned yet.  Remember last October when the mammogram of the right breast showed calcifications?  Calcifications do not necessarily mean cancer, and the right breast has never shown any increased metabolic activity on Dr. Oncologist's PET or MRI scans.  Dr. Oncologist and I were therefore not concerned at this time.  (Increased metabolic activity would be indicative of cancer, so the negative results by PET and MRI are favorable.)  Well, Dr. Surgeon decided to do another mammogram of the right breast on the morning of my mastectomy.  Although I maintain that mammograms as a rule are not that painful and only last a second, this one was a super bummer because my port is right above the business...ouch!  The calcifications were still there.  Dr. Surgeon, therefore, has decided to biopsy the area with the calcification because I now have a history of breast cancer.  Tomorrow I will see Dr. Surgeon to assess my (Wonder Woman) recovery from the left mastectomy and to plot the biopsy of the right breast that will take place on Monday.

At this point I feel like George from Monsters, Inc.  He's this cheerful hairy monster who is minding his own business when his co-worker points out that he has a dangerous contaminant (a child's sock) on his back.  Special forces swoop in and give him a rigorous decontamination treatment.  He is left traumatized and hairless (see movie clip).  The co-worker catches George with child contamination two more times in the movie.  At first George suffers another treatment, but in the end George shoves the child's sock in the co-worker's mouth and saunters away.  At the end of the movie, George's hair has grown in and he is happily back at work.

I am currently relating to the sock-stuffing George, although I plan to control myself and not exhibit any violence with any of my doctors.  I look forward to relating to the happy hairy George in the near future.    

On being lop-sided

I am not (was not?) well-endowed in the breast department.  In fact, I used to refer to my bra size as lower-case A because I frequently did not fill out the size A bra cups.  But I liked being small:  not a lot of bouncing, not in the way, and always perky.

Thus far in the recovery process my history of smallness is working to my advantage when it comes to maintaining a positive self-image after a mastectomy.  Clearly there's no breast on the left, but to me it's just not that big of a difference from the breast on the right.  Neither physically nor visually.  I'm sure many folks will disagree, but I'm thinking it's not bad at all.  My thinness is an additional advantage because the left side is now the very definition of flat-chested.  This is in contrast to mastectomies on some heavier women that leave a crater-like geography.  For my self-image, I much prefer flat over crater.        

Now that I've recovered enough to wear tops that contain a shelf bra, I thought I'd try out some mock-breast bra-stuffers that I picked up from the cancer resource center.  The bra-stuffers of course come in sizes, and guess what size I am?  Double zero.  It looks surprisingly decent, and will probably look even better in a real bra.  I'm still too sore to wear it for any appreciable amount of time, but I'm feeling good about its prospects.

Reconstruction remains a possibility, but not for at least a year (according to Dr. Radiologist).  I am not enthusiastic about it at this juncture.  After what I've been through, why on earth would I volunteer for additional suffering?  For the purpose of replacing lower-case A breasts?  You might say that I could get larger ones, but why would I want larger ones, especially since they would require even more manipulation of my flat chest?  Do you know how much stretching will have to be accomplished to get any size of a breast in there?  My chest stretching over the measly little port hurt enough, thank you.  Hopefully I have many years ahead in which to make a reconstruction decision.    

In the near future I'll get fitted for a prosthetic breast, but I'm thinking that I can do better than that.  I know my breast size and shape better than anyone else, so I plan to knit and felt some breasts.  Won't that be better than a heavy prosthesis?  Maybe you'll say that the weight is necessary to weigh down the bra, and maybe I'll say what bra? and sew my knitted breasts into every garment in my wardrobe.  Or maybe I'll simply rock the lop-sidedness the same way I'm rocking the baldness.  I'm not terribly concerned.  At least I'm alive.

A plan for the third quarter

Today I had my radiation oncology consult.  Dr. Radiologist is knowledgeable and comedic, rounding out my trifecta of amazing cancer-fighting doctors.  He volunteered praise for Dr. Oncologist, saying that he'd want her to be his doctor if he had cancer.  Additionally, he previously worked at a nearby cancer center in the state's captital and suggested that it's not as impressive as the one here.  He called the one here a diamond in the rough, not that America's heartland is rough.  Just thought I'd throw those details out there for any folks who still doubt the quality of care that I am receiving here in the pseudo-sticks.

State-of-the-art radiation equipment is indeed available here, which was an important detail for me to investigate according to my friend's dad/radiologist.  I will be doing twice-daily radiation, 6 hours apart, for 15 days (excluding weekends) using intensity modulated radiation therapy (IMRT).  The type and course of radiation is based on recent research from the MD Anderson Cancer Center in Houston, according to Dr. Rad.  IMRT is the type of radiation that is recommended for women with high-risk types of cancer and I am one of those women, despite my clear surgical margins, because my cancer was inflammatory breast cancer.  This radiation will have few side effects, and those will include certain redness and possible blistering of the skin towards the end of the treatment course.  Another tiny possibility is that damage to a smidgen of lung will affect my breathing; the radiation will miss my heart entirely.  The last side effect is fatigue, but Dr. Radiologist more or less said that compared to chemo fatigue I might laugh at radiation fatigue.  I'm thinking I'll be able to work half days at least in the beginning:  home, radiation, work, radiation, home.  We shall see.  My radiation appointments are not yet scheduled because I need the go-ahead from Dr. Surgeon in Iowa City and I need full range of motion in the shoulder.  I'm working on it.  First physical therapy appointment tomorrow.    

Notice how I used the word "was" in the above paragraph when talking about my cancer?  Pretty cool, huh?  Today is the first time I noticed my use of the past tense when referring to my cancer, and it made me giddy.  Chemo made my cancer a smaller "is", and surgery made it a "was".  Radiation's goal is to take away the "will be".  Hopefully the T9 spine thing was an absurd anomaly and this whole ordeal will have a tidy conclusion.  

I'll leave you with a funny anecdote.  Yesterday Ian and I were cleaning up dinner, but Azalea was ready for me to play with her in the living room.  Three-year-olds are not patient individuals, and although I appealed to her logic by saying I'd be there in a literal minute she kept up a slow chant of, "Mom-mmmmy.  Mom-mmmmy.  Mom-mmmmy."  Then she appealed to my logic and commanded me to lay down in my chair.  I have logged countless recovery hours in said chair this winter, and it has been my stage for countless hours of mommy-directed playtime:  books, puzzles, cuddles.  I'm guessing she figured it was nearly my chair time, which would speed her to play time with me.

Clearly I've spent too much time being sick; young minds do not remember me otherwise.

Recovery strides, and gross what IS that?

I am making great strides down all sorts of recovery roads today.  For starters, no more loose button-up tops for this hot mamma!  An important step in not feeling sick is dressing in a way that's suitable for public consumption, so I ditched the baggy manclothes.  I wrestled myself into a snug little tank top and completed the outfit with leggings, skirt, shrug, and earrings.  Also, I pried away the last of the steri-strips from my incision and got an entirely unveiled look at the mastectomy remains.  Interestingly, the drainage tubes left snake bite-like holes in my armpit.  This is in contrast to how I imagined them; I didn't have the courage to closely examine things while the tubes were in, and I always imagined the tubes coming out of the same hole or out the end of the incision.  But no, two bonus holes were made for the drainage tubes.  Again, no wonder they were causing so much of my pain.

Another recovery stride is a device to control what I'd estimate is 40% of my nerve pain.  Have I described the nerve pain in the blog yet?  Did I tell you that normal pain relievers do nothing for nerve pain?  It feels like someone heated up a sewing machine needle and started sewing up and down my underarm from the armpit to the elbow.  I think it might also be along my back/ribs a bit.  Yea.  If I don't move, it goes away.  However, anything that causes rubbing, vibrations, or (heaven forbid) goosebumps renews the hot sewing.  This crazy nerve pain inhibits my recovery by encouraging me not to move my arm.  Therefore, at the top of my agenda today was to devise a way to control at least some of the pain so that I could exercise the muscles.  I probably should have done this sooner, but only in the absence of tubes and gauze do I have the clarity necessary for engineering and execution.

What I did was cut off the leg of some running tights and dissected it a bit to fashion some slippage-preventing straps.  I slid this up over the affected area, tied it around my shoulder, and sha-zam!  The result is considerable relief because it protects from immediate friction.  Goosebumps, however, remain the ultimate enemy.  

The penultimate recovery stride of today is that I intended to do a bit of work from home.  I set up a work station in the West Wing (aka our guest room) and successfully passed the first three security levels on the government laptop.  I failed the fourth and final security thing, however, and so I am patiently waiting for my work's IT department to call me back.  If my recovery stays on this trajectory my plan is to dig through work emails from home this week and weekend, then show up at the lab on Monday ready for real science.  If I get to science while at home, that's all the better.      

I'm sure you've been waiting for it and here it is:  the gross thing that I am calling a recovery stride.  I'm taking it as evidence of recovery from chemotherapy, evidence of a renewing immune system.  Fact 1:  During chemotherapy, I had at least two and probably three sinus infections, the first one perhaps in December but certainly in January.  Fact 2:  Eleanor has had a runny nose and spiked a fever this weekend (poor dear), and I am currently rocking her cold but with milder symptoms.  It does not feel like a sinus infection.  Fact 3:  All morning long I had this sensation that I needed to blow my nose, but nothing would come out.  Finally, around noonish, something fell into my mouth from the sinus sky and choked me.  I spit it out and gagged in disgust.  I ran to the garbage disposal and slapped it in.  Fortunately I ran no water and activated no switches, for 30 minutes later I was ready to confront the unidentified falling object.  I reached in bare-handed to locate the object, but I immediately recoiled from its squish and slime and suffered a fair amount of painful goosebumps.  I extracted the object with a kebob stick and a spoon and placed it in tupperware for proper documentation and preservation.  Without further ado, alongside a penny for size reference, my sinus UFO:

Whaaaaat!?!?!  Super nasty!  How is that possible?  Is that of human or bacterial origin?  In case there is any doubt, it is laying exactly as it exists in its spongy form and is shaped exactly like my sinuses; it is not a random blob of mucus.  I desperately want Dr. Oncologist's input on my sinus UFO, so I submerged it in rubbing alcohol until my next appointment.  Perhaps you will think that keeping such a thing is the grossest part of my story, but I assure you, it's not.

And with a breath deeper than I've taken in months, I continue sauntering down my recovery roads.    

Tubes out, motivation in

I tested out my pain-scale reform today.  Before the nurse took my weight and blood pressure she asked, "And how's your pain today?"  Old Heather certainly would have said 3, new Heather said 6, and either value is largely due to the nerve pain that is so grossly exacerbated by movement and vibration.  Well, I think claiming my resting pain to be a 6 worked to my advantage because this prompted a lot of talk about how painful the tube removal would likely be.  This kind of talk, for me, is better than drugs because I subsequently implement my super pain-fighting techniques:  deep breathing, relaxation, and meditation.  Today, as always, my super powers nearly abolished the potential pain.  Tube removal felt hilarious (that's right, one better than funny) and only took a second.  The best part is that the absence of the tubes has indeed relieved 3/5ths of my pain.  Instantly.  They must have been putting pressure on things that weren't amenable to such pressure.


Let's further discuss this hilarious tube removal.  To the right is a schematic of my left shoulder (brown lines, plus brown circle for belly button.  I tried to draw my right breast as a reference point, but no dice.)  My rainbow incision is the orange line.  Previously I was only familiar with the part of the tubes that were external to my body:  2 skinny tubes, each about 2 feet long, each with a 100 milliliter plastic bulb on the end (thin purple lines in the schematic).  I never dreamed that there was significant tubing on the inside as well.  The internal tubing was about 18 inches long with a porous nature and a relatively broad, flattened shape.  The fat purple lines are where I suspect the inner drainage tubes were laying, information only inferred upon their removal.  The junction between the inner and outer tubes was stitched to my skin at my armpit; the removal of these stitches was only moderately uncomfortable.  Upon stitch removal and the count of three, the nurse simply yanked out the inner tubes.  I could feel them snake around and out of my body.  It was an utterly painless and rather sensational experience.  I daresay it tickled.    

Next, I get to do some physical therapy to get my arm moving again.  My chest, shoulder, and arm muscles are complaining loudly about their two weeks of being laid up, but I should regain nearly 100% of my range of motion in merely a week if I work at it.  I'll call today to schedule this.

The best part of getting the tubes out is of course the pain relief, but a close second is the return of my hopes and dreams.  That is, a person gets a little disheartened while going through such an ordeal, and now at last someone turned on the lights in this tunnel.  Ian and I were talking about all sorts of fun plans during our car ride, from painting the shed to shopping for a new skirt (for me, not for Ian).  I still have more nerve pain in my arm than I'd like, but my body will continue to heal and adapt, and perhaps one day it will no longer be painful.  Can't see the end of the tunnel, but at least the lights are on.  Ooh, maybe they're skylights.  Yes, definitely skylights in my tunnel.

When was my last poke tally?  Before surgery, no doubt.  I have had some bonus pokes recently to do some extra tests related to my heparin-induced thrombocytopenia (aka platelet disappearing magic) and a failed tumor marker test.  And I'll simply designate the mastectomy with a plus sign; it was neither a poke nor a negligible insult.  Not sure if I'm remembering all of them, but here's my best guess.  Oh, and speaking of pokes, the crocuses and daffodils are poking up in the yard!  How exciting!        

Poke tally:

port  28

right arm 10

tummy  6

left arm  6

left breast  1+

superior vena cava 1

T9 vertebral body 1

Heather's pain scale

I've gotten really good at dealing with pain, but I need to be more realistic in how I talk about it.  I almost always say that my pain is a 2 or a 3 according to the following pain scale:

I don't know why I do that; maybe it's because I insist on smiling through it.   I don't think I'm trying to be tough.  I've got nothing to prove.  I think I am just grossly inaccurate when trying to quantify my pain.  Also, I think that I discount finite, definable pain altogether, such as a paper cut.  Yea, it hurts, but it will stop hurting in a few minutes, so I will probably insist that it is only a 0 or a 1 on the above scale even though it is more like a 5 or a 6 (judging by the swear words I likely utter).  

So how does my pain scale work, anyway?  I figure there are only 5 values on the scale:  0, 2, 3, 7, and 8.  Zero includes minor ouchies, and 8 was only felt in the penultimate hour of labor with my first child.  Most of my recent pain I've been calling a 2 or a 3, and periodically it jumps to a 7.  Even during the spine biopsy I remember telling the nurse that my pain was a 3.    

I'll be the first to admit that this is a terrible personalization of the accepted scale.  First of all, when I complained to my mom that the nurse in the hospital didn't offer me any pain medicine she explained that nurses don't medicate pain that's a 2 or a 3.  Pain has to be greater than 3 to get the good drugs.  By constantly rating my pain at a 3, therefore, no one will ever know when I would like some help in treating the pain.  For example, I would rate my pain today at a 3, but I also rated my pain on Saturday at a 3 and Saturday was a far more painful day than today has been so far.  By recognizing this problem of mine I hope to change my ways and be a better patient in the future.  Let's revise Saturday's pain to a 7 and today's pain to a 5.  And please pass me the Tylenol.    

In other news, these drainage tubes are driving me crazy.  I called my surgeon's office and got the appointment changed from Friday to tomorrow (I had to move my radiation oncology appointment from tomorrow to Thursday).  Hopefully tomorrow you will read a happy post about the separation of me from the tubes.  And hopefully they are a large source of my discomfort, thereby relieving some pain with their removal.

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.

Stages

Okay, this healing-from-a-mastectomy-and-axillary-lymph-node-removal business is going to take a lot longer than I realized.

I have resumed taking the Tylenol 3.  On Friday my pain took a turn for the worse and steadily increased all weekend.  Today is the first day that my pain is as low as it was last Thursday.  The only explanations that I've come up with are that 1) perhaps it took several days for the excellent surgery drugs to totally wear off, and 2) I have lots of numbness in the affected area that is reducing with time, allowing me to feel what's really going on in there.  Regardless, Tylenol 3 is only half of the solution.  The other half is to sit on my tush and prop my left arm on a pillow.  This latter half is tricky because it is surprisingly difficult to actually do nothing.  My legs aren't broken and I'm not chemo-fatigued.  However, it turns out that healing from such a major surgery takes a lot of energy, and doing things with parts of my body seemingly independent of my upper left quadrant actually require efforts from that department.  Even standing still increases my pain and fatigue.  Getting back to normal is just going to take more time than I imagined.

To resolve the disconnect between my actual and expected healing rates, I have started to think about my healing in terms of stages.  By breaking this massive healing process down into achievable bits I am hoping to increase my patience with the process.  I don't yet know what all of the stages are, but here's a brief sketch of the stages that I have experienced:  1) surgery, 2) surgery detox, 3) TLC of the wound and drains (I have two long tubes running from the inside of my wound to two bulbs that I pin to my shirt or pants.  The purpose of these drains is to collect fluid that would otherwise cause swelling in my wound.  The drains have to be emptied twice a day, and the point of entry into my body has to be protected to prevent infection.  They are annoying and disgusting, to say the least).  Here are the upcoming stages that I am anxiously awaiting:  4) drain removal, 5) steri-strip removal (we've controlled the blistering with Benadryl but the queue of strips is still quite itchy), 6) physical therapy, 7) radiation.  Part of my impatience with the healing process is due to my lack of knowledge about it.  I wish I had a mastectomy manual.  The other part of my impatience probably results from spending all winter in chemotherapy.  I am so sick of being laid up.

In happier news, you should see my hair.  It is growing almost as fast as the cucumbers we started from seed indoors.  Its varying lengths make it oh so soft.  Just a few baldish spots to go.

Also happy news is that my brother won't need surgery on his shoulder.  He will wear his left arm in a sling for 6-8 weeks until the clavicle heals, but the shoulder itself is fine.

The sun is shining and I'm still smiling.

Healing pains

I switched from Tylenol 3 to Extra Strength Tylenol yesterday, and that's working pretty well.  The most pain is actually coming from the muscles in my armpit area, and from an allergic reaction to the Steri Strips that includes a bona-fide blister.  The incision itself isn't causing me much grief at all.  I like feeling a little bit of pain because I figure that that's my body telling me to not move this way or that way.  As a result I pretty much clutch my left arm against my body 24/7, working in a few exercises periodically.  Also, I when I feel pain I imagine my cells working their butts off to heal the wound.  Maybe I'll heal faster if I think about the healing.  Maybe I'll heal extra fast like Wolverine in the X-men movies.  Yea, that's it.  I'm like Wolverine.

Today I looked at my wound and didn't get nauseous.  It's extremely well done, although I expect that it will be awhile before it isn't weird.  It's basically a long arc from mid-chest up to near the armpit.  I am already anticipating thinking of it as my own special rainbow, and it will be easier to see it as "mine" after the scabs have gone.  I think the skin is being stretched quite a bit to accomplish this rainbow, which might be contributing to my discomfort.  I have to remind myself to take deep breaths.

In other news, my brother has taken "sympathy pains" to the next level.  The poor guy skied into a tree this past weekend, breaking his clavicle and tearing something in his shoulder.  Interestingly, the shoulder in question is his left shoulder, just as my left shoulder has been affected by my surgery.  It is indeed a bit Twilight Zone-y.  That aside, I feel terrible that I can't fly out to WA to take care of him.  Maybe if you have a few extra positive thoughts you could send them his way in the hope that he will avoid potential surgery.  Watch out for those trees, Ry.          

Bitter suite

Oh my goodness, the suite that my friends got us for the night before the surgery was amazing.  The linen upgrade was manifested in the down comforter and plush towels.  We had floor to ceiling windows on the east and north sides of our room, yielding lovely views of downtown Iowa City and the sunrise.  The decor was ultra hip and comfortable.  I wish we could have spent more time there, and under different circumstances.  Our thought is to go back in August, just for kicks.      

I was discharged from the hospital this morning before 10 o'clock, if you can believe it.  I was ready, though.  It is impossible to sleep in a hospital because someone is taking your blood pressure or some such chore every few hours.  I only got one 3-hour stretch of sleep and several 30-minute naps.  Yuck.  I was glad to leave and get home to my ladies.  

The car ride home was wonderful.  I rode with my aunt in an '89 Mercedes Benz, which was quite the smooth ride.  I ate a milkshake to soothe my throat.  (The breathing tube I had during the surgery made my throat quite raw, but it is managed with applesauce, milkshakes, and ice chips.)

My wound is doing great, although I can't look at it yet.  I very nearly passed out when I was trying to help my mom change the gauze.  I think I'll just lay down and let her handle that by herself next time.  The two drainage tubes don't really bother me in any way.

I'm just taking Tylenol 3 to ease the pain.  The wound itself doesn't really hurt; it's the muscles in my chest and armpit that are causing so much discomfort.  But again, it's not so bad.  Everyone's love helps it feel better.

Time for a good night's sleep.  Thanks for checking up on me.      

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.