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

The next phase of chemo

I thought that today was going to be the last day of the usual herceptin dose and the last day of the 18 weeks of hard chemo.  Instead, it was the first day of high-dose herceptin that I will get every three weeks through October.  It is quite exciting to be in this next phase of chemo and to think about no chemo next Wednesday.  The only side effect that I am suffering with this heavy dose of herceptin is heavy drowsiness.  I took a nap this afternoon, and I am still feeling sluggish in the brain.  But hey, I'll take this side effect any day over the multitude of bummers I dealt after the other chemotherapies.

Despite the absence of chemotherapy next Wednesday, I am not free from my oncologist that day.  My T9 vertebral body biopsy is scheduled for 9 am next Tuesday, and I will get the results from Dr. Oncologist the next day (Wednesday).  I also have to go in Monday for blood work, to be sure my platelets are at least 100 before the procedure.  Let's graph those platelets now (shown at right) so that you can see why we expect them to be 100 by next week.  Dates are along the x-axis, and I don't remember what the unit of measure for platelets is but that unit is the y-axis.  For the sake of clarity, I'm only graphing the last half of chemotherapy, which is the only time we've been in the platelet danger zone (gray area).  As always, the hard chemos are arbitrarily graphed at a value of 100, and the easy (herceptin only) chemos are graphed at zero.

I am awfully nervous about the results of this bone biopsy.  I'm going to try and stay distracted until then.  I plan to go to work tomorrow, Friday, and Monday (unless there are other federal holidays that I've forgotten about), and the girls and I are going to get out of town and do something special this weekend.  Maybe go to the state historical museum?  Who knows.  Anything to stay away from the precipice of tears that I teetered on last weekend. 

Poke tally:

"port"  20

right arm 7

tummy  6

left arm  5

left breast  1

superior vena cava 1

Lines and overlapping circles

I thought I'd start off with a graph, but not the one I promised in the last post.  I chose not to graph the white blood counts because I do not have access to the counts for the particular cells, just the gross white cell counts.  And there was nothing remarkable about the counts last week compared to pretty much every other week since early November:  slightly below the normal range, but high enough to keep me out of the hospital.  Instead, I chose to graph my platelets, which have been all in a tizzy over this whole chemotherapy thing.  See above.  

While I had powerpoint open, I decided to make another diagram.  I'm calling this Relating to Sickness, and although it is imperfect it will work for what I want to say.  I used to be in the blue circle.  I was quite ignorant of true sickness and what it entailed, and that was fine with me.  But now I have crossed into the red circle (dragging several caregivers with me--sorry about that) and am quite familiar with sickness.  A further category within the sick people is reserved for the super duper sick (either longevity or magnitude of the sickness count, I think), a category with which I am grateful to remain ignorant.  Finally, although formerly sick people are by definition healthy, I'm putting their circle within the sick people circle, because they are in a unique position to relate to the sick people.  Their advice is often appreciated, and the sick people yearn to become "formerly sick" and dole out the advice themselves.  I know I'm looking forward to that, anyway.

I was thinking about this because recently a woman in the waiting room at the oncology clinic launched into this whole thing about how her sister had breast cancer and oh my it was horrible but she's still alive blah blah blah.  I was polite, but on the inside I was a bit dismissive and defensive, thinking "you have no idea", putting myself on this pedestal of suffering.  I was embarrassed for feeling this way, for there is far greater suffering than mine, in terms of sickness and otherwise.  And besides, there was no reason to feel ruffled by her desire to relate.  Relating is the basis for small talk, and when in an oncology waiting room you can count on talking about the weather or cancer, two experiences you almost certainly share with your neighbor.  Additionally, I have come to realize that caregivers of the sick have their own valuable perspective on the sickness; their suffering, although of a different and perhaps non-physical nature, runs deep.  Maybe this woman was a caregiver for her sister.  Who am I to devalue her story and her experience?  

I had a point, but I've lost it.  I suppose it could be, "I had a negative thought this one time, felt bad about it, and thought of some overlapping circles to describe it," but I'd like to think it was more eloquent than that.  I worked a full day, and it's been a long one; the first day back after hard chemo always is.  Hopefully you can read between the lines and figure out my point, or at least enjoyed my overlapping circles.      

A professional patient with professional care

How am I doing today?  Am I better or worse than yesterday?  What do I need to feel better?  These are all exceedingly difficult questions to which I have no answers.  I know that I was the absolute worst over the weekend, and I know that I'll feel monumentally better by this coming weekend, but everything in between is just shades of gray.  The (now-tiresome) side effects, in order of appearance:  fatigue, hot flashes ("chemopause"--thanks Lori and Kendal!), sore bones, constipation, sore fingertips and nails, blurred vision, sore guts, dizziness, sore back, eye twitches, brain fog, diarrhea, fatigue.  The treatments, in order of administration:  rest, visitors, helpers, heating pad, oatmeal, gatorade, grandma Lori taking the girls for 24 hours Friday/Saturday (an essential treatment for all of us), yogurt.  The visitors and helpers are so critical; a shout-out to all of you who made time out of your busy holiday break to spend time with us and help us.  You make me feel like we're all in this together, which is incredibly powerful.  We're getting through this!

As your teammate I should fill you in on the cancer's retreat.  Visually, it's nearly gone.  There is still a red blush on one side, about the size of a half-dollar, and Dr. Oncologist would be happiest if that went away.  The swelling is also nearly gone.  In short, the success of the treatment continues.

I am spent, but I really want to graph something for you.  Dr. Oncologist says that I'm a bit anemic now, so perhaps my hemoglobin is doing something interesting.  I'll leave you with a hemoglobin graph, with the hard chemo treatments plotted at y=9 and the easy chemo treatments plotted at y=0.

Weakened, but holding steady!

Not just another day-of-thanks post

I have finally turned the corner on the fatigue, and yes it took longer this time.  I asked Dr. Oncologist about that today, about the nearly infinite fatigue, and she said that it's not uncommon for the fatigue to last a bit longer with each treatment.  Argh.  I find it so frustrating to be knocked over by the fatigue, probably because there is so much that I want to be doing.  But it is truly impossible to overcome the fatigue, and believe me, I try to overcome.  It's like someone put lead in my bones.  Nothing to do but lay down and wait (and wait, and wait) for it to pass.  And it is passing.  I'm a third of the way through the hard chemos, huzzah!    

I am aware that I am slouching on my graphs.  This is because my white blood cells are uninteresting.  Apparently I have Wonder Woman white blood cells that are unaffected by chemotherapy, or the weekly analysis is too infrequent to capture their periodic demise.  I will continue to think the former, although the later is certainly closer to the truth.  My platelets, however, are doing something interesting, so let's graph those now.  I plotted "chemotherapy" arbitrarily, giving the hard weeks a value of 100 and the easy weeks 0, because it's easier to do that than give the graph a second y-axis.  You can see that my platelets hate the hard chemo as much as I do, if not more.  Dr. Oncologist says not to worry, I'm not going to bleed to death, but don't take any ibuprofen or other platelet-killer drugs.    

I think I would fail as a blogger if I didn't wax somewhat sentimental on Thanksgiving Eve.  I do indeed have tons to be thankful for, first of all that the cancer was caught in the act and not after the crime.  I have a fantastic husband and the absolute best daughters in the world.  And have you met my parents?  Or my brother or sisters?  Or the rest of my family?  Not to mention my friends, who bring talents and laughter from around the globe right into my life.  I have an enviable collection of loved ones, and I am thankful for all of you.  I am sending you electronic, germ-free hugs right now.  I love you.  

Speaking of loved ones, my siblings are converging on my living room tonight to eat pizza and watch Planes, Trains, and Automobiles.  Might be the first night in a week that I stay up past 9:30, so look out!

Long overdue Poke tally:

"port"  4

left arm  4

right arm 3

tummy  2

left breast  1

superior vena cava 1

  

A day in the life

Today's post is a photo narrative of a chemotherapy day, such as yesterday.  Please click here to see all of the pictures and captions.  Below are two highlights.

As promised, the port.  In the album, there are "action" shots of the port as it was used yesterday.  

Yea, I have a problem with setting the date on my camera.  Below I am receiving chemotherapy in a private room.  Yesterday I knitted a scarf for Azalea (Holly, I'll work on your blanket next time).  More pics and details of the whole process can be viewed here.  

And look below for how my white blood cells have rebounded from the first round of yucky chemotherapy (2 weeks ago yesterday)!  Thank you, Neulasta!

In other news, I am feeling good.  I have two new side effects of chemotherapy that are, shall we say, opportunistic infections, so now I have two new prescriptions for those.  My aunt bought me a pill box, which is really wonderful, but it's slightly horrifying that I need a pill box.  The previous side effects of brain and digestive tract fog have subsided. I still have a bit of fatigue, but is so mild that it is impossible to distinguish cancer fatigue from living-with-two-small-children fatigue and time-change fatigue.  Today, for example, the fatigue really only hit me after I gave my 3-year-old a piggy-back ride for six blocks.  But it is awfully convenient to blame the chemo.  

Bonus: a graph!

I rocked it this weekend and was pretty much my old self.  Side effects have all but disappeared.  The only reminders that I have cancer came from our refrigerator (which is bursting with food-filled tupperware, thank you everyone), my port (curses!), and my hair cut (not for long!).  I'm going to try to work a normal week, except of course for chemo day itself (Wednesday).

Today I finally went through all of my piles of cancer crud, and one of the things I found were the data from my blood work.  I am missing data from the day of my surgery, but you can count on me to ask for it at my next visit.  That data point is important because it was taken right before chemo started.  But even with the mere two data points that I have, you can see what can only be the effect of chemotherapy on my neutrophils:

 Ian is teasing me for graphing this, but I can't help it and it only took a few minutes.  Along the x-axis are different types of white blood cells, and the y-axis is the absolute cell count.  The blue bars are my counts from 10/20 ("you have cancer" day), and the red bars are from this past Wednesday (2-weeks later).  It will be exciting to watch the counts as my treatment progresses!  (Nerd salute!)

Please note that I've added a feature at the bottom of the page, which is a list of the books I've read since the diagnosis.  Not that you'll want to follow along, but it might be interesting to see if a theme develops that particularly relates to my present situation.  These first two books couldn't be more different, but a survivor theme is definitely present.

Frame of my brain

Above is one frame from my brain MRI movie that was taken last Thursday.  It's weird to me that it still looks like me.  I should have smiled or something.   Pretty sweet stuff. 

In the light