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.    

Tick tock

As I lay on the operating table with the nurses and technicians bustling around me, I couldn't help but marvel at all of the resources being spent on helping me live.  I thanked them all for their efforts.  Then a nurse put the gas mask over my mouth and told me to breath deeply.  I instinctively started in on my mantra, "I have strength, I am strength.  I have peace, I am peace.  I have strength, I am...".

Now that I am six days post-op, and I find myself impatient to get on with living.  After months of chemotherapy and now a major surgery, most of the gears of my life have necessarily ground to a halt.  I am so excited to wind them up again.  I feel like a shiny pinball has rolled into position, and I'm amassing the energy to pull the spring and play the game.

Amassing the energy takes so much effort, though.  My thoughts remain cloudy, perhaps yet from anesthesia, painkillers, chemotherapy, or all of the above.  I am not in half as much pain as I was after my first mastectomy, but the wound is nonetheless stressful and exhausting.  I cannot yet look at my new wound without getting nauseated (although everyone who has looked tells me "it looks good"--it is still a bit too purple and gruesome for my tastes).  Taking a shower is my most dreaded activity, because of the effort to both hold the drainage tubes and to not look at my wound.

Ah yes, the drainage tubes.  Did you know that their official name are J-P drainage tubes, or Jackson-Pratt drains?  You must be one egotistical person to name these disgusting things after yourself.  They collect fluid that ranges in color from red to golden yellow, and occasionally clumpy stringy bits of me collect with the fluid.  They utter terrible, juicy sounds when being emptied.  They are a pair of plastic testicles pinned to the inside of my shirt, flapping against my stomach when I walk and occasionally peeking out from under their hiding place.  They are so, so gross.  I get them removed one week from today.  I'm almost halfway done with them, not that I'm counting down or anything.          
My mom has been a wonderful asset this week.  She is a nurse who is on a short leave-of-absence to be here with me.  She is a lifesaver, doing all of the things I either can't do (such as walk the girls to school) or don't care to do (such as empty my Jackson-Pratts).  I appreciate you, mom.

In addition to getting on with my own living, I am anxious to start paying back all of the kindnesses that have been shown to me throughout this cancer ordeal.  I fear that my debts to the universe are getting quite large.  Hopefully I will have ample time to pay them back.

ps  I finally fixed the YouTube glitch and got the movie of my last chemo to upload.  It's now linked properly in my Last Hard Chemo post.

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.