The weekend after

To recap, Friday was a stressful, cancer-scare roller coaster that ended with good news:  the breast MRI showed nothing abnormal in my lungs or chest wall.  The excessive amount of radiation I recieved is to blame for the continued increased metabolic activity in those regions.  Hopefully that activity will fully subside before the next PET scan. 

What does a girl do after a day like Friday?  Rocks the heck out of her weekend.

After I got the results on Friday at 5, it was hard to say whether I felt like curling up on the couch under an afghan or putting on my tall boots and going out.  I opted for tall boots.  Thanks, Ian, for giving me a night off from the kids.

I drove to a bigger city and met my sisters, aunts, and step-mom for a night on the town.  It was fantastic.  Even the drive was therapeutic, both because it was valuable time to decompress and because I got to listen to whatever I wanted to at whatever volume I wanted.  Turns out that I like to feel the bass in my chest, and I hadn't listened to Outkast's Speakerboxx in a really, really long time--the kids aren't big fans.

 
(the only relevant lyrics here are "can you feel that B-A-S-S bass".  Don't try to decipher the rest.)

We went out for dinner and we went dancing.

I slept in on Saturday.

I took the girls to spend the night with their cousin at Aunt Jacque's house on Saturday night.

My dad called to invite Aunt Jacque to a basketball game, but since I was there she decided to pass.  Is it wrong that I scarfed up the ticket and ditched Aunt Jacque?  Yes, it is, but that is what I did.  It's not every day I get a date with my dad.  And oh my goodness did I pick a good game to attend.  We won in triple overtime, against the best team in the conference!

I didn't get to sleep in on Sunday because my ladies never sleep past 7:30, but there's more to life than sleeping in.  We packed a picnic and had lunch at the botanical gardens.  The sun was shining, flowers were blooming, and fishies were ducking the coins that my girls pelted at them.

To cap it all off, my mother-in-law made us homemade pizza tonight.  It was a splendid weekend.  The only part of me that remembers Friday is my shoulders (still a bit tense).  Hopefully yoga tomorrow night will relieve some of that.

You know what's funny?  When I got the crappy PET scan results on Friday morning, my first two thoughts had nothing to do with death or pain.  They were about fatigue and vanity.  I said some version of, "BUT I NEED A VACATION!  I'd better go on a vacation right now so that I don't have to spend my vacation time on being sick again."  Then I said something like, "BUT I HATE MY HAIR AND I DON'T WANT TO HAVE TO GO THROUGH THIS AWFUL GROW-OUT AGAIN!"  Isn't that something?  I surprised myself with my shallow and irrational reactions compared to the very serious possibilities of cancer treatments and aftermaths.  I later apologized to my oncologist to demonstrate that I recognized my misplaced values.  She was very understanding and said that I had a right to be frustrated and irrational.

I continue to be intrigued by my reaction because I feel like I do a good job of simply wanting to live (this weekend is Exhibit A), and yet when confronted with another threat to my longevity the first thing I did was whine about my hair.  It really is a terrible hairdo for me, but it doesn't hold a candle to any of the other cancer side-effects.

Lunch is packed, blog is posted, and now it's time to squeeze in a few minutes of relaxation before visiting the sleep fairy.  I hope you all have a great week!  

2.5

Wish I was sitting down to post some Julie Andrews chirping in the hills.  Instead it's Julie Andrews with her spoonful of sugar to help the medicine go down.

The PET scan was not clean.

The PET scan continued (third scan in a row) to show low-level abnormalities in the left lung.  Dr. O thinks it's residual radiation damage, but unnamed Dr. Radiologist wrote on the report that those are usually gone within 9 months after radiation.  My radiation ended 8 months ago.  Per usual, my result falls into a gray area.

The PET scan also showed low-level abnormalities in my left chest wall.  This too is probably part of the recovery process, but here again the conclusion is that it has had nearly ample time to recover.  This result combined with the above result equals a breast MRI at noon today.  I might get those results today, if a radiologist is available to read the results.  More likely is that I'll get the results on Monday.  I'll let you know in the comments.    

Isn't a "breast" MRI a moderately offensive misnomer to investigate an area from which the breast has been removed?  I suppose "breast" is used generally to refer to the region at large, but it is nonetheless irritating for a person lacking a literal breast.  But I digress...

And finally (no, we're not done yet), the PET scan showed a low-level abnormality in my colon somewhere.  This means I get to have a colonoscopy on February 21st, and I hear that they just do biopsies as needed during the procedure.  Good times.

Hence the 2.5 designation of my ranked outcomes from the previous post.  I should have known that I would get results that fall awkwardly between my expectations.       

Dr. O is not alarmed by any of these things.  She does not expect any dire outcomes, although I don't feel that she sufficiently explained why or why not.  I, on the other hand, am disappointed and of course moderately alarmed.  I have been told before not to be alarmed but then what was the outcome?  Oh, right.  Inflammatory breast cancer.  So I will take a deep breath, and another, and another, and try to slow my 104 beats-per-minute heart.  I certainly don't need that body part to fail me now.    

Mind games

PET scan is complete.  Ian and I will get the results tomorrow at 9:15.

Until then, I estimate that I will discover 4 red spots, 3 sore bones, 2 lumps, and 1 headache.  Because that's how it is in the interim between Scan and Results.  You can be as healthy as I have been for three months now, but when you're waiting for PET scan results it doesn't matter.  You rediscover all sorts of relatively normal blemishes, aches, and pains, and you wonder if they will result in suspicious spots on the PET scan.  Remember, suspicious spots on the PET scan are indicative of elevated metabolic activity, which is indicative of cancer.  

My preferred outcomes are ranked as follows:

1) No suspicious spots at all 

2) Suspicious spots that we keep tabs on until the next PET scan

3) Suspicious spot that requires a biopsy

4) Suspicious spot and biopsy that indicate cancer

I suppose you could have inferred all of that, but it was therapeutic to do the rankings. 

Now I'm off to work.  I don't have any meetings today so I think I'm going to keep the stretchy pants on.  Bold move, I know, but today I don't care.  Wearing comfy clothes might help me feel more relaxed.   

It's that time again

Once again, just around the corner on Thursday, is my next PET scan.  These things seem to come around sooner and sooner every time, but no, they're only every three months.  Only.

I think the interval between PET scans seems shorter now because I  have my health.  I am no longer measuring my life by the next PET scan.  It's hard to believe that there ever was a time when I measured my life by the next PET scan, but there was and I did.  I remember thinking that the next PET scan would mark the end of chemotherapy, or the end of radiation, or the end of herceptin treatments.  Now it's a disconnected PET scan among research publications, folding laundry, and putting together princess puzzles.  It seems unrelated to life as I know it, and it reminds me of the life that I don't want to know again.

There's something to be said for, "What you don't know won't hurt you."  Don't get me wrong, I'm a proponent of Knowledge is Power, and obviously unknown cancer cells in your body are exactly what WILL hurt you.  But regarding the emotional side of coping with cancer, it certainly seems easier to not know about it.  Knowing about it means that there will be long periods of dread and pain.  PET scans are near the epicenter of that dread.

The PET scan itself is relatively painless (4-hour fast, 2 pokes, 1 hour rest, 0.25 hour scan), but the dread of the results is formidable.  Questions of, "Do I have cancer", "Has the cancer spread?", and "Has the cancer come back?" plague the mind until the moment in which the doctor at last pours over the lengthy results with you.  And even with good news the relief is not complete, at least not for me, the girl who has never scanned clean.  First it was the inflammatory breast cancer, then it was my T9 vertebral body (didn't turn out to be cancer, thankfully, but the dread between the PET scan and the biopsy was unspeakable), and two consecutive scans with tiny nodes on my lungs (too small to biopsy, yay?).  So I rejoice in a mediocre sort of way and try to forget about the decent but not good news until the next PET scan.  Which is upon us.

Lung nodes, you've got to go away.  I appreciate that you don't get any bigger, but you inhibit my ability to release my inhibitions.  Let's end this relationship, shall we?  Out, damn'd spots!        

Freaky itchy rash

Gross post title, I know, but it really is an accurate summation of what I'm about to share with you.

About a week ago I noticed about a dozen itchy red spots on my skin.  Of course, they weren't just anywhere on my skin.  They were all within the vast expanse of skin on my chest wall that was irradiated to eliminate any rogue inflammatory breast cancer cells.  Long-time followers of this blog will have learned that inflammatory breast cancer has an incredibly high risk of recurrence in the first 2 years, and you might also remember that inflammatory breast cancer manifests as a sometimes itchy rash.  You can therefore imagine my initial reaction to wake up and see spots localized to the Region of Perpetual Scrutiny.

The panic quickly subsided, however, as the Voice of Logic and Reason took over:  recurrence of cancer in mulitple locations at precisely the same time should be highly unlikely.  So I located my prescription-strength hydrocortisone from my previous rash scare and applied liberally.  Twice per day.  Over the long holiday weekend.

The rash got worse!  I was and still am barely winning the fight against clawing at my skin.  I periodically lose the battle and imagine how my absent-minding scratching must appear primeval appear to others.

I finally managed to work myself into Dr. Oncologist's schedule at 5 pm today.  Beneath the dull intensity of institutional fluorescent lighting, the rash really was a remarkable sight to behold.  Speaking in two-dimensions, the area of my chest that was irradiated is shaped like a double-wide New Hampshire, reaching from the bottom left half of my rib cage clear up onto my neck.  Even in the absence of this knowledge, one could trace the outside edge of my rash and the resulting shape would roughly be a double-wide New Hampshire.  In other words, the rash exclusively occurs in the region of irradiated skin.  It is truly remarkable.

So...what is it?  Dr. O isn't sure, but she's sure it isn't cancer.  Since it didn't respond to the hydrocortisone, and indeed seemed to worsen, the prevailing hypothesis is that it's a fungal infection.  Yeast are a type of fungi, and yeast-related infections are known to become more irritated with hydrocortisone.  I now have my old trusty anti-fungal pink trapezoid pill (diflucan) to take for the next twenty days and a greasy ointment with which to slather my chest.  Geez I hope it starts working soon!

Also, WHY on earth do I have a yeast infection on my chest wall?  The literal answer is that the irradiated skin is extremely vulnerable and immunocompromised, meaning that it is and will continue to be eager to pick up infections and irritations.  I'm not really sure where I picked up the yeast, but I do live with small (aka germy) children.  Also, certain yeasts are a natural part of human microbial communities, so maybe this opportunist actually lives somewhere else on my body and just took a road trip to my chest wall.  Long story short, I don't think there's anything I could have done to prevent this.  But it kind of blows my mind and simultaneously grosses me out.

And finally, am I going to have to deal with this freaky-a$$ crap for the rest of my life?  SUPER bummer.  Normally I would end with something cheesy like, "At least I'm alive to live this glorious day!"  But let's indulge my New Hampshire itch festival for a moment and just leave it at bummer, indeed.                

My creative surgeon

As I was doing the dishes on Tuesday night among bouncing children, I was absently listening to NPR and caught a familiar name.  The host of Talk of Iowa was describing her upcoming show, and the guest was to be none other than Dr. Carol Scott-Conner.  That's "Dr. Surgical Oncologist"!  That's the surgeon who removed my cancerous left breast!  I have done a good job thus far of keeping my doctors anonymous, but I am willing to "out" this one in order to share her accomplishments.

She is an award-winning surgeon and instructor.  She is also very personable and genuinely seems to care about her patients, this one included.  And on top of everything, she is a writer of short stories.  Can you get any more amazing?

Follow the link above to listen to my surgeon talk about her career and her writing.

Fitness!

I haven't been doing enough exercising lately, especially not the kind that gets my heart rate up, but the little exercise I'm doing sure is a lot of fun.  In addition to attending a yoga class once per week, the girls love to do yoga with me at home.  It's not at all meditative, it's full of interruptions, and it never lasts long, but I do get something out of it.  Endorphins released by laughter should count for something towards health and fitness, if not in the exercise category.  

Many of you have probably never done yoga before, so I thought the girls could help me show you some of the moves we know.  Here is table pose:

Here is banana pose:

And finally, triangle pose:

We can usually get in a good 10 minutes of yoga before one of us loses interest.  (Rarely is it me, but I'm not one to point fingers.)

Another fun winter exercise for the kids is a new game that Ian devised called Fitness.  Observe:

The silliest part of all of this indoor fitness is that the weather has been so mild this winter.  We are still walking to the grocery store, walking downtown, and walking to playgrounds.  But it is still quite chilly after dark, which is when most of our indoor exercise occurs.  And for our lifestyle, there is no such thing as too much exercise.

Flush

On Tuesday I went to the Oncology office to get my port flushed.  Have I mentioned this yet?  In brief, I'm no longer using my port (huzzah!) but I have to keep my port until the odds improve that I will remain cancer-free (boo!).  An unused port requires routine maintenance so that no yucky blood clots or infections develop in the port.  So about once a month I need to pop in and get my port flushed.

It takes about as long as an oil change; most of the time is spent waiting.  

I have previously documented my port and its usage for chemotherapy.  But thankfully it's been awhile, so I thought I'd document the flushing procedure.  First, access (poke) the port with an L-shaped needle.  Then draw liquids out of the port before flushing.  This is because a small amount of heparin sits in the port reservoir 24/7 to prevent blood clots in the port, but I had heparin-induced thrombocytopenia back in March.  This means that heparin indirectly causes a decrease in my platelet count.  I probably don't need to worry about it any more, because I probably have enough platelets to spare now that I'm recovered, but I just don't feel like doing something I know my body hates.  You never know when you'll need all of your platelets!  

So I always ask the nurse to draw off the heparin before flushing my port.  Sometimes something is stuck in there (yuck!) and I have to do the Y-M-C-A to get it unstuck.  "Gross, what's stuck?" you may ask.  Well, perhaps my body tried to "heal" the tiny opening in the port tube, thus blocking it temporarily.  Perhaps the port tube is stuck to the side of my superior vena cava.  We're not quite sure.  Only once were we unable to will it unstuck, and in that case we just proceeded to flush the port with saline.  The force of the flush is always sufficient to unstick my port, it's just on the initial withdraw that the challenge sometimes presents.  

After the withdrawal of the heparin comes the flush with saline.  Ten to 20 milliliters (I'm such a nerd that I don't even know how many ounces that is, or perhaps a true nerd would have the conversion memorized) is all it takes.  Finally, the nurse gently injects a mere three milliliters of heparin into the port reservoir before removing the needle.  

I've decided not to add the port flush pokes to my poke tally.  I feel satisfied with my year-of-cancer-treatment poke tallies, and don't want to artificially inflate its meaning with port flush pokes.  

But the real point of this post is to admit how WEIRD it was to be in that oncology waiting room!  I feel good, I have a full head of hair, I'm not being treated for anything, I'm smiley.  The further I get from all of that cancer business, the less amenable I am to be in a place having to do with cancer treatment.  It didn't bother me for my December flush, but I was slightly bothered this time.  I even found that a decorative quilt in the reception area that I so adored now makes me slightly queasy.  All of this is an interesting phenomenon that we must keep tabs on, but perhaps I've said enough for now.        

New Year's nature walk

New Year's day was one of the coldest days so far this season, primarily due to the gusty wind, but it was too beautiful not to go outside.  We took the family down to a nature area by the river for an easy hike.  

  

We thought we'd cross the river to the dirt trail, but the wind was just too much over there.  So we threw the requisite stick (because who can stand above a river and NOT throw a stick into it?) and retreated to the asphalt path.  We were heading north, into the wind, so we bundled the kids up in the wagon with the quilt that my mom made for me when I graduated from high school.  It's still my favorite blanket, mom.

Once we were half-way cold we decided we should turn back.  With the wind at our backs, the kids disembarked and walked all the way back to the car.  In my view, the walk was nice but they especially enjoyed visiting with their parents.  We talked about all sorts of nature-y things, even if we didn't see a particular aspect of nature on this particular walk.  Volcanoes, for example, were a popular subject on this day.  We also heard and saw a hawk hunting, which was a rare delight.

 Then we found some sandy Iowa mountains, one just the right size for each of the girls.  Both mountains were climbed entirely independently of parental assistance.  The victorious Queens of the Mountains are shown.

Then, each with frozen toes and a drippy nose, we returned to the car and drove home.  A good time was had by all.