Notes

It's a perfect time to write some thank-you notes. The girls are at a mindfulness for children yoga class (thank you, 100 miles to nowhere, for making that possible!), so I found a spot at a nearby coffee shop. I only wish I had more time. It's going by too quickly. Always does. Hope you are enjoying your Sunday! 

Closing the gap

I've started using conditioner in my hair again.  It still seems too short to necessitate conditioning, but it is frizzy, post-chemo hair that could use assistance in settling down.  So, condition I must.  It is rather exciting to be using conditioner again.  I have to consciously remind myself to condition after shampooing because it has been over 6 months since I last conditioned.  In the first few weeks after my hair fell out, I wasted probably a half-bottle of conditioner, measured out in quarter-sized dollops during every shower.  I would squirt the conditioner in my hand only to realize that there was no point in conditioning my scalp, then wash it down the drain.  It was terribly hard to break the habit of conditioning.  I'm finding that it is much easier to re-discover the conditioning step than it was to lose it.

In other hair developments, today was the first day that I went all day without a head covering.  I am not ashamed of my short hair, but I do get quite chilly when that is the only barrier between my head and either the outdoor elements or my chilly office.  My thin layer of hair is at last thick enough to provide some protection.  Also, I've discovered that if I keep my neck covered, such as with a scarf or collared shirt, I retain enough heat to support my hair freedom.

Also, my eyebrows are about halfway returned to normal.  This is probably the most exciting hair growth development because my face now looks more familiar to me.  My eyebrowless face always looked strange to me, not to mention pale and sickly.  My eyebrow hair is now long enough to provide some color, shape, and versatility of expression.  How exciting, she said with eyebrows raised for emphasis!  

I've been thinking a lot lately about what I could blog about, and aside from hair growth not much came to mind.  This surprised me because I would have expected myself to have all sorts of things to share, process, or at the very least document about recovering from a second episode of breast cancer treatment.  This has not been the case.

The first time I recovered from cancer treatment I felt much more emotional.  I had fear and apprehension about so many unknowns, namely what recovery would be like, how long it would take, and if my cancer would come back.  This time, the fear is gone.  I know the answers to all of my previous questions (tiring but glorious, several months, and yes).  I don't want to give cancer any more of my attention than I have to, which is plenty of attention every third Friday for my Herceptin + Pertuzumab treatments.  Instead I am trying to pick up my non-cancer life where I left it 8 months ago, closing the cancer-life gap as if it doesn't exist.  When I'm not in treatment I have largely given cancer the middle finger, both middle fingers, and stormed back into my life.

For better or worse I have not taken much time for reflection on my experience, except for a handful of great walks in the woods and yoga sessions.  It seems that it would be good for me to take some more time for reflection.  My plan to force some reflection is to require myself to finish my cancer thank-you notes by the end of November.  It is the month of Thanksgiving, after all, so it seems like an appropriate goal.  I know that no one is expecting a thank-you note, and that I probably will have missed a lot of people who deserve a thank you note, but I'm going to do my best and it will be from my heart and it will feel good.

In the meantime, cancer can eat my dust.  I hope it chokes on it.          

Symmetry

My scar is pretty much sealed up now, with only about an inch of a deep scab remaining to fall off.  The itching has transitioned from obtrusive rashes to a healing twinges.  I have resumed my weekly yoga class, and I already have better range of motion in my right arm (surgified 7 weeks ago) than my left arm (surgified and irradiated 3.5 years ago).  I daresay I'm healed.  Efforts to improve strength and energy will now be the focus of my meditations.  

Being physically healed has cleared the way for the next phase of healing, and that is the mental healing.  Interestingly, adjusting to my breastless state has been much quicker and easier than my previous adjustment to having a single breast.  I think that there are at least two reasons for this.  First of all, I'm experienced in dealing with the emotional trauma that comes with losing a body part.  Going through that loss a second time has been much less traumatic.  Secondly, adjusting to my new body shape this time around is much less complicated than it was the first time.  This has to do with the issue of symmetry.  I spent a lot of time struggling with asymmetry after the first surgery, both psychologically and when shopping for clothes.  The second mastectomy has returned me to a symmetric state, which I find suits my self-image.  Perhaps I look oddly flat-chested to other people, but to me, I'm symmetric with no breast cancer.   That look suits me.    

Throughout this first phase of healing it has been important to wear loose clothing that doesn't constrict or pinch any parts of me.  We want to ensure that the blood can flow to and lymph can drain from the sites of healing.  Now that I'm past the itching and swelling, I can explore my options for undergarments.  Clearly I don't need a bra, but some sort of torso-covering undergarment provides both warmth and comfort.  

My friend J recently sent me an article about breast cancer survivors who started businesses to help fellow cancer patients and survivors, and one of the businesses sells appealing undergarments to women whose chests have been modified by cancer treatment.  There probably was a time when I would have thought this sort of thing unnecessary ("Why not just wear camisoles? They are cheaper and cover more area," I may have said), but now that I am in this situation I am excited to have found someone who is actively creating a resource for people like me.  Perhaps with a bit more shopping I'll decide that I don't actually need something necessarily bra-like, but a person does like to have options.

Speaking of options, I still have the prosthesis that I received after my first surgery.  I think it's under my bed or something.  I only wore it a handful of times.  Soon I will be sufficiently healed to get a prosthesis for the other side, and then I will have yet another option for optimizing symmetry and self-image.  

Finally, on a lighter note, guess who surprised me for my birthday on Friday?  

Surprise!  Happy birthday to me!  Look how symmetric we are--there are two of each!

All of my beautiful siblings!  Even Ryan, who flew in from Seattle for the surprise.  I have the best family ever.  I love you guys.

A week-long celebration

My friends.  Oh my, my friends.  How I treasure you.

Bike World, the corporate sponsor of 100 miles to nowhere set up a tent in my yard.  Photo by Kathryn Corones  

 On Saturday, two of my friends rode their bikes 104 miles around and around my block.  They intended to ride 100 miles, but rewarded pledges of $200 or more with an extra mile.  My mom was one of those extra-mile donors, but her donation was electronically received right after the bikes were shed following the 103rd mile.  Woops!  My friends got back on their bikes and dutifully rode one more mile.  And look at those smiles!

The queens of going nowhere (among other achievements):  "Norman" (left) and "Panda"

My dad joined them for a casual 84 miles.  

Nothing casual about this guy.  He proceeded to run a half-marathon on Sunday.  Love you, Irondad!

Several other friends, neighbors, and family also rode for various miles.  Ian and the girls probably logged nearly 10 miles, and I pedaled for a mile or two myself.

photo by Kathryn Corones

It was the most beautiful day.  Panda has some more details about it on her blog.  One of the things she said is true for me, too, and that is, "I feel like I didn't have the mental ability or energy to truly thank everyone that came to support."  I felt that way, too, and I wasn't even biking!  I tend to feel overwhelmed as the frequent recipient of the outpouring of generosity and support.  During 100 miles to nowhere, much like during the Huzzah party in June, I found myself trying to enjoy it a bit anonymously, as if I were attending a festival or event that was for someone else or everyone.  The good thing about the anonymous feeling is that being overwhelmed did not spoil my ability to have fun.  The bad thing is that I did not properly exhibit the humility or gratitude that continues to fill my heart.  I had a wonderful day at 100 miles to nowhere, and I won't soon forget it.  Thank you, friends, for doing this for me and my family.  Also, thank you, Carnation Nation, for being such a large and powerful place.  Thank you for being a part of my life.

Saturday was the beginning of this awesome week that is my celebration of life.  My life, which I happily continue to inhabit.  It has once again been proclaimed by the governor that this week is Inflammatory Breast Cancer (IBC) Awareness week.  I'd like to remind everyone that the signs of IBC are different than other types of breast cancer that commonly present as a lump.  IBC often has NO LUMP.  IBC can turn up as itchiness, redness, or firmness that feels like inflammation, or all of these things.  For more information please see www.eraseibc.org.  When in doubt, rule it out!  (If you'd like to buy our T-shirt that says just that, please email me at 30carnations(at)gmail(dot)com.)

Finally, this week will end with my birthday!  I will be 34 on Friday.  I can't wait.  I have always loved my birthday, but I will be particularly happy to celebrate it this year.  I had several low moments this year when, with a certain amount of bitterness, it crossed my mind that I might not make it to my 34th birthday.  Yet here I am!  With lungs full of oxygen and no more breasts to poison me!  Who knew that 34 would feel so good?  

I hope you all are having an excellent week.  Please help me spread awareness of IBC!

Raking

"Let's go jump in a leaf pile!" said my daughters after another pleasant family dinner.  It was so temperate outside this evening that we didn't even need our jackets.  Everyone put on their shoes and tromped around the house to the backyard.  The majesty of the mature maple appeared as we rounded the corner of the house.  The maple tree is about the same size as our modest two-story home, with its oversized red-orange leaves glowing above our patio and yard.  Half of the leaves presented their beauty yet on the tree while the other half were scattered about the yard.  Ian and I used the large red rake to scoop the leaves into an orderly pile, building it ever taller at the request of the children.  They took turns alternately scattering the pile and burying each other in it.

I found myself standing with the rake in hand, waiting to be summoned to repair the pile.  I looked up, admiring the leaves yet attached to the tree as they twisted in the crisp fall breeze.  How did we get so lucky to buy a house with such a perfect tree?  "Full and colorful maple tree" was not on our must-have list when we were shopping for houses, and yet I can't imagine living without it.  So many happy times are associated with that tree:  grilling on the patio under its shade, pushing babies in the swing that hung from a low branch, frolicing in a leaf pile unrivaled by any in my childhood.  I wondered what future happy times are in store for me under the tree.

My gaze drifted up above the tree to the darkening sky.  The darkness descended much earlier than I expected, reminding me of how quickly the autumn is passing.  Where is autumn going?  Where did spring and summer go, for that matter?  Oh yea, I was sick.  I thought about how 4 months ago I had a PICC line and neutropenia.  Now I have a port and health.  With my health I have walked the girls to school, visited grandparents, attended the circus, cooked all sorts of foods, eaten all sorts of foods, and worked on my science.  And raked leaf piles.

"Mom, we're ready for you to fix the leaf pile!"  I turned my attention back to the girls, the rake, the leaves, the earth.  As I dragged leaves with the rake I felt the power of my legs, torso, and arms.  Both arms.  Whole body.  I was complete.          

Well, that didn't take long

This weekend proved that my re-entry to Life is speeding right along.  Can you believe that I walked the 5K at Race for the Cure on Saturday morning?  Three weeks and three days post-mastectomy #2.  Boom.

That's me in the middle of the back row, surrounded by a bunch of awesome family members.  For additional awesomeness, check out my dad's wig (front row, left side).  

After the race, I came home and cleaned my toilets for the first time.  You might think that this is mundane, gross, and unworthy of highlighting, but I beg to differ.  I have not had the energy to spend on toilet cleaning in seven months.  Seven months!  This weekend I had the energy, and the confidence that my energy would be sustained following the toilet cleaning.  It was therefore with a certain amount of gratitude, if not outright joy, that I cleaned my toilets between the hours of 2:00 and 3:00 on Saturday, October 4th, 2014.  Afterwards I bypassed my former rest on the couch and went for a victory lap by tidying up the kitchen.  Chores have never felt so good.

Having energy to perform a task is only half of the solution.  The other half of the solution is a side-effect of having energy, and that is the reclamation of my time.  During cancer treatment I spent gobs of time sleeping and resting.  By the time I had attended to my bodily chores (appointments, eating, bathing) I had scarcely any energy-charged time for the family, let alone activities of my choosing.  The gift of time is almost as sweet as the energy itself. 

This weekend I possessed energy-charged time for the family.  Race for the Cure was invigorating, toilet cleaning was satisfying, and throwing my daughter's 7th birthday sleepover was...surely there's a word for the warm loving glow that has surrounded my heart all day?  It was wonderful.  She had her three best friends over for a sleepover.  We made pizza from scratch, frolicked in the leaves outside, built a fort in the girls' bedroom, and gobbled Ian's famous stovetop buttered popcorn with Mary Poppins.  Ian and I didn't even stress with additional organized activities, we mostly just let them play.  They all fell asleep between 9 and 10 pm, and they all woke up just after 7 am.  They drew pictures quietly for half an hour before I got up to make pancakes (also from scratch--I do love homemade foods!).  Just over half of them let me braid their hair while we watched The Magic School Bus.  Then we turned off the TV and played Twister until parents started to arrive.  A glorious time was had by all.   

This is the life.     

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.    

24 hours

Twenty twenty twenty four hours to go
I'm gonna be elated
Nothin to do
Nowhere to go
I'm gonna be elated
Just put me in my dad's car
Take me to the main
Hurry hurry hurry
Before I go insane
I can't control my itches
I can't control my drains
Oh oh oh oh oh oh

Almost perfect news, and 100 miles to nowhere

Dr. Surgical Oncologist's office called with what she described as "good news" and "almost perfect news" regarding the pathology of my breast cancer.  The good news is that six months of chemotherapy worked as it should; a little bit of ductal carcinoma in situ (DCIS) remained in the breast tissue, but it was no longer invasive.  This means that it wasn't trying to grow out from its location.  The other way that I took this as good news is that the remaining DCIS seems to support my decision to get a mastectomy.  No doctor has said that, but my gut is taking this at further evidence of its trustworthiness.

The almost perfect news is that the pathology confirmed that there was no cancer in my lymph nodes.  The reason this is not fully perfect is that they did find a few cancer cells in the duct on the way to the lymph nodes.  I have no idea what this means.  Was my cancer spitting off cancer cells until the moment it was cut out of me?  Or had these cells split off from the cancer long ago and decided to hang out in this bodily hallway?  But it doesn't matter because the lymph nodes were clear, which is the most important result.

I'll see Dr. Surgical Oncologist on Tuesday when I get my drains removed, and I'll get clarification on the significance of all of the pathology then.  Also, the surgical team is/was to present my case to the Tumor Board (again) today, so it will be interesting to hear what everyone at the institution thinks about my case.  I have my fingers crossed for no plot twists, such as radiation.  I'm ready to close the case, at least for now.

My recovery is continuing in a positive direction.  The only major development is that I have a hot, itchy rash that covers my chest wall surrounding the surgical sites.  I'm not terribly surprised to have a rash, since rashes have been one of the main sidebars of my chemotherapy this time around.  But I am terribly uncomfortable.  I have been taking all sorts of allergy medicines to try to control the rash:  benadryl, zyrtec, zantac, allegra.  The only thing that has been moderately effective is an anti-inflammatory ointment, but it is not a cure.  It prevents the rash from bubbling and oozing (yay!), but it allows it to maintain a hot and itchy state (boo!).  My second tool for getting relief is ice.  I ice the chest wall all day long.

Additional relief came this week in the form of some amazing news.  Two of my dear friends are organizing and riding 100 miles to nowhere, on their bicycles, around my block.  They are doing this on Oct. 18th to raise awareness of inflammatory breast cancer and to raise funds for my daughters.  To read more about their event and to find out how to participate or donate, please check out "Steven's" blog here, or "Norman's" blog here.

The kindnesses, generosity, and support continue to amaze me and fill me with gratitude.  Can't wait to hug you, Steven and Norman.          

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.

Elation

Updated to add a link to my revised pain scale.

I did it!  Huzzah!

Wait a minute, that's not nearly enough exclamation marks for the hbomb.

Huzzah!!!!!!!!!!!!!!!!!!!!

Let me start out by deeply and publicly expressing my gratitude to my friend M, whose last message to me before surgery was to remember my revised pain scale. Thank you, M, mother-of-triplets. I love you. (I revised my pain scale after my first mastectomy. That is when I learned 1) my previous notion of intolerable pain doesn't exist for other people; that is, I have a bit of a pain tolerance. Combine this with my aversion to drugs, and the result is me estimating my pain at a 2 or a 3 on a 10-point scale. After a mastectomy.  So vowed to revise my pain scale.)  My revised pain scale allowed me to recognize my pain as a 5-6, which elicited the perfect drugs. They reduce the pain down to a 2 (a real 2) and don't send my brain out to lunch. Perfection!

Also, I'm simply not in as much pain as I was with the previous mastectomy. I am not experiencing nerve pain, and this was the Worst last time. 

Finally, I have discovered a new pain medication that is going to make my sister rich and famous. He is baby Calvin, and when he smiles the mastectomy is erased. He's leaving soon, so hopefully the only ache he leaves behind is mild and in my heart. 

The surgery went well!  Dr. Surgical oncogist said that the sentinel (first) lymph node was NEGATIVE for cancer. A thousand huzzahs!!! She was nonetheless conservative and removed the sentinel node, a second node, and an inch of fatty tissue around them.  My armpit is the most sore of my wounds. 

I have nothing to report about the mastectomy yet. It will be a week before we know the pathology. 

The port was placed successfully. Huzzah! It is another purple power port, which is the same model as my previous port. Prior to surgery, a resident doctor freaked me out to the point of tears by saying that the vascular doctors would be placing my port on the left side.  But my mastectomy was on the right today!!!  She had all sorts of reasons that made clinical, theoretical sense, so I explained my real-life, empirical reasons: the skin on the left is very tight and is scarred from full chest wall radiation, up until yesterday I had a blood clot in the left jugular that May or may not be fully resolved, and my right side was already undergoing surgery. She conceded slightly, writing on the consent form "left or right" and agreeing to let the vascular surgeon make the call during the operation. Ah!  That's a bit nerve-wracking!  In the recovery room, the very first thing I said was, where's my port?  I am thrilled to report that it is tucked into its former home on the right. When I later saw Dr. Surgical Oncologist, she apologized for the apparent confusion, because she always intended for the port to go on the right. The information simply didn't trickle down to all of the folks interacting with me (seemingly dozens).

I'm spent, with nothing left in me to read and revise. Hopefully this has been sufficiently coherent and error-free.

I am humbled by and grateful for your support.  <3 and (>'')>

Cellular torture

My daughters have a small indoor tent made out of a material that is a strange hybrid of fabric and paper.  Dora the Explorer images are printed on each of the four sides.  They've had it for several years, set up in the toy room by the window as a special reading nook.  On Labor Day weekend I wasn't feeling tip top, but despite my lack of energy I wanted to do small things to make the weekend special.  One thing I thought to do was take the Dora tent outside.  Not to be bothered by collapsing the thing, I picked up the tent by the peak, which unfortunately elicited a ripping sound.  I awkwardly maneuvered the torn tent down the stairs, at which point Azalea pointed out a large tear down the back of the tent, reaching up to the ridgeline from the back door.  I reached for some masking tape, intending to fix the tent just enough to perform this final outdoor activity before depositing it in the trash.  With tape in hand I pinched the new seam, which readily flaked off a chunk of the paper-like fabric between my fingers.  I chose a different ripped location and grabbed again, liberating another hunk of the tent into my palm.  The fabric must have weakened over time, perhaps because of sun exposure at the window.  Before my small ones could throw a fit over their disintegrating play house, I embraced the tent, tear and all, and tossed it into the yard.

My brain on taxotere is the fabric of the Dora tent.  Weak, fragmented, and orange.  Each morning I toss myself into life and hope for the best.  

Fortunately I am feeling a little better every day, and I will continue to get better in the absence of further cellular torture by chemotherapy.  At night I send my healing thoughts to my brain, taping up the pieces of my mind.  This week I have caught myself making some coherent thoughts, so I thought I'd attempt this blog post.

Tomorrow we make the drive to the other town for my pre-mastectomy procedures.  At 2pm I am having vascular pictures taken.  These are for the doctor who is going to be placing my port.  I used to have a port, but I had it removed after being cancer-free for almost 3 years.  Dr. Oncologist chose not to re-install my port for the current cancer treatment for numerous reasons.  However, now that I am looking to be infused with Herceptin and Pertuzumab every three weeks for the rest of my life, I asked if I could get another port.  I figured I could get it installed at the same time as my mastectomy.  All of doctors on my team thought that this was an excellent idea.  My port will be placed in exactly the same location as my old one:  chest wall, center-right side, just below the collarbone.  A doctor whom I have not met yet will come into the operating room after my mastectomy and hook me up.

At 3pm tomorrow I will be injected with a radioactive tracer.  This will be injected into the breast cancer.  On Wednesday the doctors will be able to follow the trail of radioactivity to see which lymph nodes to remove.  This procedure is called sentinel lymph node dissection.  I didn't have this before because it is not recommended in cases of inflammatory breast cancer.  It is recommended for ductal carcinoma in situ, which is my current diagnosis.

My surgery is scheduled for 7 am on Wednesday.  I am to report to the hospital at 6am.  My husband, parents, sister, and mascot (Calvin the Cure) will be there.  I will stay in the hospital for a night or two.

On my previous mastectomy eve, my college friends booked a room for Ian and I at a fancy, contemporary hotel.  I decided to do the same this time, for luck or something like it.  I'm not superstitious.  It just seems like an appropriate night to be a tiny bit spoiled.

I am grateful to not have any downtime between my last chemotherapy and this surgery.  It's true that the surgery will keep my healing energies busy, and that my healing energies could use a break.  However, I feel that it will be easier to maintain my healing routine than to be teased by a break from healing only to be plunged back into the fray at a later date.  Besides, I don't want the cancer to think that I've gotten complacent.  Kick it to the curb!

48 hours from now my cancer will find itself excised from its happy Heather bath.  It will be slapped onto a lab technician's benchtop, fixed in formalin, set in paraffin wax, and sliced into thin preparations for a pathologist to scrutinize under a hot, microscopic spotlight.  I am not a vindictive person, but after all of the pain that cancer has caused me, I delight in the cellular torture that is about to be inflicted on it.    

Last hard chemo!

It was a party in chemo room 7 today. Non-alcoholic champagne, treats, and excellent company.

Elation!

Are you sure there was no alcohol in the bubbly? Or is that the Benadryl kicking in?

On the way out I got to ring the end-of-chemo bell all the way out through the waiting room, hugging nurses the entire way.  S took a short video.  It was very emotional. 

What a beautiful way to end the hard chemos!  I can't wait to get through this next week! Huzzah!   

I've still got this

Alright.  I've finally got my hbomb back.  Sorry if I scared any of you, but thank you for all of the extra support I've received.  Some of your words and gestures were deeply touching, such as the books from Nebraska, the email from Wisconsin, and the bead delivery.  I love you all.  I'm sure that they are the direct cause of my improved mood.

A few other things have helped me to feel better.  1) Last night I escaped from my life by going to the cinema.  I haven't been to see a non-animated movie in an age.  My friend S was my buddy, and I inadvertently tested her friendship by dragging her to a Woody Allen movie.  I'm so out of the pop culture loop that I didn't know it was written by Woody Allen!  I just saw that there was a Colin Firth movie playing (I love Colin Firth) and I hastily dragged us to it without doing further research.  This is pure neglect on my part, considering the various modern technologies I could have employed to spare us from this tragedy.  In all seriousness, Colin Firth was excellent and the story was unique, so we just rolled our eyes at the pretentious scenes while we happily munched on our popcorn.

2)  This afternoon I hosted an ice cream social at work.  An undergraduate student who has worked in the lab all summer is returning to her institution next week, so someone suggested an ice cream party to celebrate.  I brought the ice cream and everyone brought a topping to share.  The result:  a lovely half-hour with my awesome co-workers eating the fanciest sundaes imaginable.  Sure we had hot fudge and strawberries, but would you believe that someone made homemade candied ginger?  And homemade cinnamon toast croutons?  I don't think any of us stopped at one sundae.  You'd be in a better mood, too, if you had sundaes like these.

3)  I took my daughters to the pool tonight.  I put my hat on Eleanor so that I could stand under the waterfall and let the water massage my shoulders.  I tried to get her to hold my sunglasses, too, but she couldn't get them to stay on her face and so she moved to set them down...in the water.  I decided it was best to hold them outside the waterfall myself.  Also, watching my girls hold hands as they ascended the steps to the waterslide was pure bliss.  

I've rapidly progressed to the point where I'm so ready to be rid of this toxic breast it's not even funny.  I don't know how I can possibly wait until September 10th.  Oh yea, I suppose I'll be busy recovering from tomorrow because...

...IT'S MY LAST HARD CHEMOTHERAPY!  Woo hoo!  I'm oddly excited, like almost as excited as I feel before a trip or a show or something.  I've already got the coffee pot filled with water and decaf grounds, set to brew at 7:02.  My intentional choice of the odd time of 7:02 makes me even happier.

I'm pretty sure that I had more things to say, but my friend F just sent me this awesome mix via Spotify.  Now I'm distracted by these fantastic tracks.  Here's one for you.

It's scheduled

Wednesday, September 10th, is the date for my second mastectomy.  I wasn't expecting to feel relieved by having this scheduled, so it comes as no surprise that I am not exactly jubilant today.  

On the plus side, that fantastic Indian restaurant my dad and I tried to hit up last time was indeed open today.  Lunch was amazing.  Huzzah for being able to taste and digest my food!

If you'll recall, Dr. Medical Oncologist was going to present my case to her institution's Tumor Board.  As luck would have it, Dr. Surgical Oncologist was present at that Tumor Board meeting and so had already spent a lot of time pondering my case before my appointment today.  She chuckled at what a lucky girl I am because all four surgical oncologists in her department were present at the meeting.  Apparently this is a rare occurrence.  This is lucky because they all weighed in, and Dr. Surgical Oncologist was able to present me with the consensus today.

Consensus:  My case falls in a medical "gray area", and the surgical oncologists will support whichever decision I make.

Well, at least we can all agree on the ambiguity of the way forward.  Huzzah for a consensus?  Bleh.

Since my diagnosis in February I have thought that the breast has to go.  This was muddled by new data brought to my attention in recent weeks, but given the "gray area" I fall back on my need for the breast to go.  Mastectomy for me.

Decision made!  And it is the right one!

At the time of mastectomy we will also do a sentinel lymph node biopsy to determine which one(s) to remove.

I thought that getting some of these things nailed down might provide a bit of relief from the turmoil, but so far it hasn't.  I'm just so tired of all of this.  I'm just so tired.  
 
Home stretch.  Home stretch home stretch home stretch.

I've got to get out of this funk so that I can enjoy the special day that is Friday--my ninth and final hard chemo.  15th lifetime.  That's pretty fantastic!  My dad and my friend S will be joining me.  We're going to have croissants and coffee.  It's going to be lovely.

It's all going to be lovely.  

Disoriented

My head, or my heart, or both, have been in increasing turmoil since my appointment with Dr. Medical Oncologist last week.  I think it is because, for arguably the first time in my entire cancer experience, the path forward is conflicted.  My treasured oncologist, Dr. Oncologist, thinks I should keep my breast (and thus my primary cancer, which certain science suggests will control my secondary cancer), while my Her2 expert, Dr. Medical Oncologist, thinks I should remove my breast (and thus remove the potential for future breast cancer, which we have learned I am prone to develop).  Neither oncologist is highly confident in their position.  They both suggested that I get the opinion of a surgeon, so tomorrow I will see Dr. Surgical Oncologist for her opinion.      

I have been barrelling through this cancer treatment on the notion that I will beat this breast cancer.  That is what I do.  I beat breast cancers.  However, the current oncological conflict has greatly reduced my confidence in my ability to fight cancer.  The two paths have transformed into a "damned if I do, damned if I don't" mentality: remove the breast, but feed the lung cancer! Or keep the breast, but develop another breast cancer in a year!  This negativity has been coursing through my veins, soaking my weak and defenseless brain day and night.         

The inner turmoil has been manifested as extra fatigue, distractedness, and unsettled guts.  At my sister's delightful baby shower on Saturday, I found myself thinking well, this could be my last baby shower.  I felt not sadness but bitterness, mostly about having to contend with these thoughts during what should have been an enjoyable family event.  Who needs these thoughts?  Also, any baby shower could be anyone's last baby shower.  Why has my own mortality, after so many months of much weaker days than these, come to the forefront this week? 

Today my children inadvertently kicked me while I'm down, as it were.  They were playing an imaginary game after school today.  One of them was the mom, and the other was the kid, and I wasn't paying that much attention to their play as I worked on the dishes.  All of a sudden one of them said, "...and then the mom died...".  I tuned in fast.  They argued for a bit about whether or not the mom actually needed to die, and one argument included the fact that she had to die in order for one of the players to turn back into a baby.  I was relieved that it was an abstract mom dying abstractly and not a real-ish mom dying of, say, cancer.  In the end the pretend mom did not die, the winning argument being that one of them could simply turn into the baby without the death of any pretend beings, and so I did not interrupt the game for a heart-to-heart on Moms and Death and the role Cancer could play in that.      

Is no corner of this life safe from my cancer life?  My eyes have been watering all month.  I thought it was allergies, but perhaps I have been quietly weeping, watering my soul garden.

I went to another restorative energy session today.  It was really lovely.  I told her about my turmoil.  She had so many snippets of wisdom, most of which were placed somewhere inside of me such that I can't recall them but they are still in there, guiding and supporting me.  One that I still remembered by the time I returned to my car, which is relevant because then I could dictate it to my iPhone and release my feeble brain from the responsibility of remembering, is to trust my center.  When I am feeling centered, do I think I should have a mastectomy or not?  Perhaps I should ask myself this question every day for a few days, listening to my body and detecting any fear in my inner voice.  I don't want the decision to come from a fearful place.  

I take this to be similar to a "gut feeling".  I can usually trust my gut feeling.  Today my gut feeling is to go for the mastectomy.  However, today I am also bitter and unsettled, as discussed above, so perhaps today's not a good day to query my guts.     

She also gave me a metaphor for the two paths forward.  She suggested that the oncologists are recommending that I travel to a National Park.  One oncologist wants me to go to Yosemite, and the other to the Grand Canyon.  It turns out that I haven't been to either park (perfect for the metaphor!), but neither would be the wrong choice (true statement!).  

This is what I need to start thinking about my cancer treatment options.  Neither is the wrong choice. That is so hard for me to say.  If I only had more data I'm sure that one of them would clearly be the wrong choice.  I desperately need more data.  Nope, there I go again, start over.  Neither choice is the wrong choice.  Whatever choice I make is the right choice.  Neither choice is the wrong choice  

I have strength.

I am strength.

I have peace.

I am peace.

And I have the ability to rest.  Let's go rest before tomorrow's data collection.  

Progress

Oh my.  I sat down to write an interesting and informative post about my appointments today, but I am overcome by fatigue and a touch of nausea.  Perhaps I will have energy for a more interesting post tomorrow.  The short update is as follows:

-Dr. Pulmonary Oncologist says that my lung nodules are few and tiny.  Even he won't biopsy them now.  He's impressed with how they've responded to treatment.

-Dr. Medical Oncologist thinks that the best course of action for me is indeed a mastectomy.  This is because it seems important to eliminate the potential for new breast cancers to sprout, more important than the risk of metastatic cancer getting worse.  She also thinks that I should remain on herceptin and pertuzumab (the anti-Her2 therapies) indefinitely.  Aka, for the rest of my life.  This will suppress the metastatic cancers and prevent new cancers from developing.  None of these recommendations were scientifically obvious, however, and so she plans to take my case to her institution's Tumor Board this week to get the opinion of her colleagues.  She'll let me know if her recommendations change after that. 

-The Indian restaurant is closed on Mondays.  Drat!  Instead, we found a Vietnamese restaurant with equally good reviews.  The food was delicious.   

-My dad is the best.

Getting close

One left.  At long last, I only have one hard chemo and its recovery to go.  This will be my ninth chemotherapy for this cancer, 15th chemotherapy lifetime, and it will occur on August 22nd.  Can you hear the trumpets and fanfare?  I almost can.

                                                                            1

                                                                         1 1

                                                                      1    1

                                                                            1

                                                                            1

                                                                            1

                                                                            1

                                                                            1

                                                                            1

                                                               11111111111111

In the meantime, I have plenty of resting and strength-building to do.  Good thing it's been pretty much the most awesome midwestern summer in recent memory.  I just love being outdoors with my kids, family, and friends.  I do a lot of walking around the neighborhood with various of these comrades.  It's good for strength-building, among other things.

Tomorrow my dad is driving me to my other Cancer Center for appointments with Dr. Medical Oncologist (the Her2 cancer expert) and Dr. Pulmonary Oncologist.  I am looking forward to the trip for the following reasons:  1) it'll be awesome to spend a day with my dad, 2) we're going to try a new Indian restaurant for lunch, 3) I'm hopeful I'll finally learn what further treatments are in store for me after my last taxotere on August 22nd.  

It was just Dr. O and me at my usual appointment with her this past Friday.  After the exam, I told her I was excited for my appointments tomorrow.  It's true, I am.  Knowledge is power.  I'm ready to come up with a plan and execute it.  Her response, however, was discomfiting.  She chuckled, saying she's glad I'm excited about the appointments because she's nervous.  Nervous?!?!  Why would she be nervous?  It turns out that the treatment path forward is unclear to her as well.  To be clear, she has ideas (more than I have!), but there's no protocol for precisely what to do with my and my cancer(s).  I suppose she's nervous about what further treatments these other experts will suggest.  Or perhaps she's worried about whether or not any of the plans will work for me.  Who knows.  Clearly she knows more about what could happen to me than I do.  All I know is that I am a helluva long way from deathly ill, and I seem to be moving in the right direction (chemotherapy side-effects notwithstanding), so I'm not going to worry about those things yet.  

At the end of this conversation I said well, at least I can count on a mastectomy in my not-so-distant future.  Here's where she threw me curveball.  At the breast cancer conference she attends every year, new research was presented showing that patients with metastatic disease (that's me and my lungs) do WORSE when the primary cancer (that's my breast cancer) is surgically removed.  To say this another way, patients with metastatic disease do BETTER when the site of the primary cancer is kept in place.  Can you believe it?  No one yet knows the mechanism for how this counter-intuitive phenomenon can be, but it just might mean that I'll continue to be lopsided rather than breastless.  Cool!  

I suppose, then, it becomes important to have confidence with the conclusion of metastatic disease.  Boy am I glad that I'm seeing a pulmonary oncologist tomorrow.  I have my PET scan disks in my bag. 

In the meantime...Just keep healing, just keep healing, healing, healing, healing.

My krumping heart

My heart is full of peace and love
It rarely pounds in anguish,
Regardless of the circumstance,
It does not seem to languish.

My heart is good.  My heart is strong.
I can depend upon it.
But the medicine.  It does me in!
The 'roids wreak havoc on it.

And my heart goes

bump
bump
bump
up a-
gainst
my
chest
wall,
each
ventri-
cle
strugg'ling
to
out-
do,
krump
krump
krump
to the
beat
of the
'roid
song,
keep
me
awake
'til the
break
of
dawn.

Things I love more deeply than previously appreciated

I have several ideas for blog posts, some of which I've jotted down in my notebook, but I just haven't taken any time for writing lately.  Instead of writing, I have crammed all of the joys of summer into my two good weeks--hosting, traveling, swimming, gardening, grilling, visiting, and playing.  It's been a miniature summer in mid-July, and it's been lovely.

All of this activity has had a happy effect:  I've quite forgotten about my ongoing medical treatments.  Until today, that is, when I realized that tomorrow is, you know, treatment day.  Sigh.  Only two more hard ones to go.  A month from today I'll have my 15th lifetime hard chemotherapy and the worst of its aftermath behind me.

Another happy effect resulted from the activities occurring after being sick for virtually the entire months of May and June.  This is a deeper appreciation for the things that I love.  It's been a strange feeling for me, because I feel like I have always appreciated even life's most basic experiences.  Perhaps what I've learned is that there are a few things that I don't like to live without?  Or that I strongly miss when I'm incapacitated?  Below is a list of these things, in no particular order.

1)  Braiding my daughters' hair.  The pleasure is derived not from brushing or otherwise "doing" their hair, but specifically from braiding it.  I love to braid their hair.  After they make their braid requests, they sit or stand patiently in front of me while I braid-to-order.  Braiding-to-order is my favorite kind of braiding, because it tells me that they too enjoy it when I braid their hair.  I braid across the front of their heads, as is trendy these days.  Sometimes I join the braid with a ponytail in the back.  Sometimes I join the small front-braid with a larger braid in the back of their heads.  Sometimes I braid all the way around their head in what we call a braid crown.  I gently separate three pieces of their soft, colorful hair and weave weave weave.  It's wonderful.  We might have to set the alarm a little bit earlier this school year to ensure that we have time for all of this braiding.  

2)  Analyzing data.  I don't mean synthesizing information or thinking about problems.  I mean opening a spreadsheet, organizing columns of data, perhaps adding a column to transform the data (just a small tweak), choosing the best statistic, perusing the results, and selecting the best graph.  Oh man.  It's heavenly.  I'm a scientist by trade, so you might assume that I knew I enjoyed this sort of thing.  What I am saying is that I didn't know how deeply I loved it until I couldn't do it for weeks and weeks, and then I could again.  

3)  Ian's singing.  My friend R and I took his broken guitar to the shop and had it repaired, and now he's singing and playing a lot more again.  His voice is like butter.  Real butter.  I can't live without butter.

4)  Finding a new recipe, cooking it, and eating it.  I am certainly no foodie, but after so many weeks of nausea and crappy taste buds (let's not count the weeks) I find myself longing for tasty food.  I enjoy cooking and baking, always have.  It is fun to find new, healthy recipes.  It is also a good time of year for cooking because of all of the delicious produce that is in season.  For example, on Tuesday my grandpa gave me some of his first eggplants of the season.  I knew I had to cook them before I got sick, so last night I tried my hand at eggplant parmesan.  I employed a three-stage coating method that I saw on the Food Network when I was in the hospital:  flour dredge, egg dip, breadcrumb (Panko) + parmesan dredge.  Then I pan-fried them and served them with normal pasta and marinara.  Oh man, it was both fun and delicious.  The kids even tolerated it.

5)  Nature.  Eleanor received a microscope for her birthday (I swear it was her idea, "Mom, I want to be able to look at small things!"), and now we go through life collecting things that would be fun to look at under her microscope.  Most of the time we don't even make it to the microscope; collecting nature with my daughters is sufficiently delightful.

6)  My family and friends.  Didn't think this one was possible.  Don't know that I'll ever be able to show you.  I'll spend the rest of my life trying, no doubt by occasionally employing 1-5 above.  If only I could send Ian in the mail to serenade you!  I supposed some baked goods will have to do.          

User's guide to taxotere

Here is a breakdown of my week with taxotere and the counter-side-effect drugs (e.g. steroids) as the only aggressors to my system.

Day 1 (infusion day):  My PICC line was removed about a week before the taxotere infusion, so the taxotere had to be infused via a vein in my hand.  That evening, my hand felt like there were tiny fireworks occasionally going off under the skin, always in different places.  I knitted for several hours that night to encourage whatever was causing the fireworks to flow with the blood out of my hand.  Next time I think I will ice my hand during the taxotere infusion, which will temporarily decrease the flow of blood to the hand and perhaps decrease the taxotere fireworks.  Also, the steroids kept me awake until 4 am, so knitting away fireworks was an excellent activity.

Day 2:  I felt deceptively awesome, and that's about all that I remember about Day 2.  I drank a lot of water to flush the drugs out of my system.  I kept eating, walking, and Doing Stuff, and my husband kept commenting on how awesome I was doing.  I walked to the clinic to get my Neulasta shot, then I napped all afternoon, then I helped with supper.  My probiotic regimen (serving of yogurt for breakfast or lunch, probiotic pill after dinner) started on this day.

Day 3:  I reached my functional peak when I awoke and made blueberry pancakes.  The crumminess started to set in after that.  My bones started to feel sore and oh so heavy.  My brain started to feel foggy.  Both ends of my guts were holding steady, no nausea or diarrhea, but these two things usually kick in on Taxotere Day 5.  Napping and resting became functional requirements on this day.

Day 4:  The slide down to the taxotere valley was in full swing.  Heaviness and fogginess, but I still ate food, went on a 2-block walk, and took a nap.  This day marked the beginning of the unsteadiness taxotere always brings.  It's not the same as dizziness or lightheadedness.  I call it "spinny".  The only cure for spinny-ness is time, although laying down helps prevent the spinny-ness from aggravating the nausea.  

Day 5 (Tuesday):  The taxotere valley.  Spinny, foggy, heavy, sore.  This day was marked by the crumminess reaching a depth from which complaints failed to emerge.  I've noticed this about myself--I can tell when I'm starting to feel better because I start to complain more about my woes to whomever is around.  When I'm feeling my worst I tend to complain less, making my feelings clear by closing my eyes and sleeping through it all.  The good news about this taxotere valley is that the nausea and diarrhea did not start up.  Perhaps my probiotic regimen is working?

Day 6:  The valley continued onto this day.  Also on this day, my taste buds started to get weird.  This is an inconvenience, but does not prevent me from eating.  Foods simply don't taste the way I think they should; this will persist for another week, then be better until my next treatment.    

Day 7:  The fog started to lift from the valley.  My mom could tell that I felt better just by looking at me.  All that ailed me was simply less.  Also, my secret weapon for Day 7 is a little being named Calvin.  Calvin is my newest nephew, and he was born three days after I started chemotherapy (March 7).  My sister has brought him up to hang out with me every Thursday after treatment.  He is a marvelous baby, never fussy, and a is glorious antidote to my ailments.  He and I lay around and chat for hours, then when it's time for my walk I push him in the stroller, which serves as a walker for me.  It's the best.

Calvin the Cure.  No pressure. 

This has nothing to do with this post, but he came to my chemo appointment last Friday and made everything better.  He's the best. 

Day 8 (today):  I think it's fair to say that I am already monumentally better.  At my appointment today, Dr. O said that my blood is good--I'm neither anemic or neutropenic.  I feel heavy, only a bit nauseous, and blah blah blah who cares because it is so good to feel decent!

Now I am entering the time when it's hard to strike the right balance between what I want to do and what I should do, because I still have a lot of resting and recovering to do.  Those three doses of FEC were crazy disruptive, giving me barely one good week out of every three.  Now it's looking like I'm going to get two solid good weeks out of every three.  Paradise!  Oh, and for all of you in-laws in the audience, Dr. O gave me permission to attend the family reunion next weekend--I can't wait to disseminate hugs!     

My last bit of good news is that today Dr. O told me that she won't have me get another PICC line installed.  Huzzah!  My former PICC line site is healing quite nicely but the skin is still swollen and discolored, perhaps from scar tissue.  I guess that my hand veins performed well enough last week that she thinks I can handle the remaining two (2!) doses of taxotere without a PICC line.  This is good news to me because although the PICC line was a wonderful tool to avoid getting pokes, it was inconvenient for Life and painful for my skin.      

And now I'm going to try my hand at some Science for an hour or two.  I hardly recognize myself from where I was a month ago.  This is wonderful.  

All good things, all good things

I will present to you my good news not in the order in which it was received, but arranged by the magnitude of relief it provided.  The first item provided the most relief, and the last item was relief-neutral.  That means that no new fears were introduced today.  HUZZAH for no new bodily concerns!!

1)  The taxotere did not leak.  It turns out that I was quite anxious about this.  The cancer might take me down before I'm ready, but dammit I will be typing until my dying breath.  Huzzah for no burning tendons!

2)  The PET scan revealed no new cancers in my body.  This is a feat considering my history of false positives, and the false positives are why I tend to be leery of PET scan results.  Huzzah for preventing cancer dispersal!

3)  The PET scan showed that, "The previously noted innumerable pulmonary nodules have all decreased in size when compared with prior study."  That is the only sentence on the report that comments on my lungs.  I would tentatively expand on that sentence and by saying that the innumerable pulmonary nodules were gone.  I could see them on the previous scan, but on this one I couldn't see them at all.  I could see the handful of tiny pulmonary nodules that have been noted on my scans for years, but the "innumerable" spider-webby-everywhere nodules were gone.  This scan is being sent to Dr. Pulmonary Oncologist to get his opinion.  Huzzah for yellow paintbrushes!

4)  The right breast and lymph nodes showed no increased metabolic activity.  Huzzah for killing the breast cancer!

5)  I still have a blood clot in my jugular.  Interesting.  Still nothing to do for it but continue taking a blood thinner and waiting for it to resolve.

6) A "Fat-containing periumbilical hernia [was] identified."  Ha!  Apparently this is a fat bubble behind my belly button.  I have an "inny" belly button, not an "outy", and can neither see nor feel this periumbilical hernia.  Needless to say I do not expect this new development to have any bearing on anything at all.  I hate PET scans!

After all of this glorious news I carried my blanket back to chemo room number 8, which happens to be my favorite chemo room, to receive today's dose of taxotere, herceptin, and pertuzumab (TH+P).  As I suspected, the results of the scan in no way changed my course of treatment.  But it's okay.  I'm on the home stretch!  I'll slog through the taxotere fog over the next 5-10 days, then I'll be back on my feet with only two more hard chemos in front of me.  I'm not expected to get severely neutropenic again, and therefore I am not expected to be hospitalized again.  Sayonara, FEC!! F-U, 5-FU!

I'm hoeing a row that has been recently tilled.  We've got this, no problem.

But I am rather tired.  Rather.  Tired.    

Independence Day came a day early this year

I intentionally try to refrain from complaining on the blog.  Indulging in complaining merely feeds the negative energy that generates the need to complain.  It is easier to overcome the cause of the complaint if I do not validate it with a complaint.  Also, I've found that blog-complaining sounds even more whiny than verbal complaining, and I do not want SGPC to become a festival of whining.

An introduction like that can only mean that I am about to unleash a festival of whining.

The problem has been with my PICC line.  PICC stands for peripherally inserted central catheter.  To fully understand the scope of the problem, you have to understand the nature of the PICC line.

On March 6th, 2014, almost FOUR MONTHS AGO, my PICC line was installed.  Its physical manifestation is as follows:

image source

This is very similar to mine.  Differences are that my butterfly-shaped piece, here outlined in dashed lines, is much larger; the line dangling from the arm is shorter; and my line was placed above the elbow, not below.  image source 

Because the end of the PICC line is external, extreme care must be taken to keep it secure and to protect it from infection.  These are achieved by 1) the butterfly clip strongly adhering to the skin and holding the line in place, 2) a quarter-sized antibacterial patch that rests on top of the point-of-entry for the PICC line into the skin, and 3) a 3x3 inch piece of clear plastic adhesive covering items 1, 2, and the area surrounding the point of entry (light blue square in the image above).

At least once per week for the past 17 weeks, items 1, 2, and 3 have been removed and swapped out for fresh ones.  Also, the skin has been excessively swabbed with alcohol at each exchange.  If one had a PICC line for a week or two these things would be no problem, but I had my PICC line for WEEKS.  Over time, all of these things are a bit harsh on one's skin.  Just a bit.

Needless to say, my skin started to irreversibly complain in mid-May.  Since then it has grown increasingly itchy and painful.  The skin under the adhesive was perennially red.  It felt alternately like poison ivy, or a bad sunburn, or a skinned knee, or all three at once in different quadrants.  Then I would have a day where it didn't bother me at all and I'd think it was getting better, only to wake up to another day of PICC line perturbations.    

During my most recent hospital stay, a wound specialist visited me to try and troubleshoot my growing skin issues.  The butterfly clip and the antibacterial patch were non-negotiable, but two different types of adhesive coverings were tried.  Nothing improved the condition of my skin around the PICC line.  

Last Wednesday, after yet another dressing change that left me raw and burning, I realized that my suffering was getting to be a bit ridiculous.  I had started waking myself up at night, scratching at my PICC line in my sleep.  I had to ice it to get any relief at all.  It had even started to ooze.  On Wednesday I noticed that my skin ooze was seeping through the adhesive dressing.  That, my friends, was the last straw.  I messaged Dr. O's office and begged to come in on Thursday (July 3rd) and find a solution.

On Thursdays Dr. O is out of the clinic, so it was just the nurse and I.  She removed all of the accoutrements, noting that the skin under the butterfly clip was much worse than the 3x3 patch of skin under the adhesive.  She channelled some old-school nursing skills and used steri strips to weave a PICC-securing mechanism to replace the insulting butterfly clip.  After she got this far, she decided that my skin looked "yeasty" (gross!) and swabbed it for a culture.  (Dr. O takes a culture every time I'm neutropenic, so only 6 days prior to this swab we knew that I did not have a yeast infection around the PICC line.)  Then she called Dr. O to discuss the situation.  I could overhear the nurse's side of the conversation, and she adequately described my PICC line site in response to Dr. O's questions.  Finally, the nurse mentioned her instinct that it could be "yeasty".  The conversation ended shortly after that, presumably because upon hearing suspicions of infection Dr. O gave the orders to remove my PICC line.

The nurse came back into the room and pulled out my PICC line.  Just like that.  It didn't hurt; it hardly felt funny.  One minute I had a PICC line, the next minute I didn't.  That was it.  No blood squirting out of my arm, no stitches, no bandage, nothing.  Just a hole in my arm the size of a dried-up pea, surrounded by a large swath of angry skin.

FFFFFFFFFFRRRRRRRRRRRRRREEEEEEEEEEEEEDDDDDDOOOOOOOOOOMMMMMM!!!!

Since then I have been taking an oral antifungal medicine and applying topical antifungal medicine, but on Monday Dr. O told me that the cultures came back negative.  She nonetheless wants me to keep up these medicines until three days after my skin has cleared up.  A negative culture result does not necessarily rule out something infectious.

The skin is slowly healing.  It was very painful all weekend, and the pain has receded into a basic itchiness.  The area that used to be covered by the butterfly clip is still clearly demarcated by a red triangle.

Although I am enjoying this sweet freedom from having a PICC line, the most notable feature of which is the ability to hop in the shower anytime I want to without having someone wrap my PICC line arm in Glad Press-and-Seal, it is unfortunate that it had to be pulled.  The PICC line would be the safest way to administer the remaining three doses of taxotere.  In the absence of the PICC line, the nurses will start an IV in my hand and put the taxotere there.  The risk associated with this approach is that if the taxotere leaks out of the vein, it can cause severe burns and permanent damage to the nearby tissues.  Dr. O specifically mentioned the possibility of tendon damage that could inhibit my ability to type.  Gulp.  I think the risk is low, but the consequences are high.  My plan is to drink plenty of water prior to treatment tomorrow.  And cross my fingers for no taxotere leakage.  Also, it is entirely possible that we'll put a new PICC line in after the skin has healed.  That would be okay.          

The ever-dreaded PET scan

I had a PET scan yesterday, the purpose of which was to see if any cancer is remaining after 6 cycles (18 weeks) of chemotherapy thus far.  I have not yet heard the results of the PET scan.  I could have scheduled a special appointment today for no other purpose than to learn the results.  However, I decided that I'd rather have a break from the clinic/hospital than to have an appointment today.  I'll be there Friday anyway for treatment, so why not wait until then?  We discussed the option of Dr. Oncologist calling me with the results, but both of us dislike the scenario where she is giving me bad news over the phone.  So, I am waiting for Friday, where she will give me the news in person.  Won't that be lovely?  Yes, good news in person on Friday.

You might be wondering, "But Heather, how on earth can you wait until Friday?  You must be on the edge of your seat!"  I assure you I am not.  I had forgotten about it entirely until coworkers asked me about it today.  (Huzzah for going to work and attempting Science!)  Here is a table explaining how it is now possible to forget about PET scan results:

                      Former Fear                                                  Current Comfort  
The breast cancer could come back!                                 Meh.  It already has.
The breast cancer could move somewhere else!               Meh.  It already has.
The results could be odd and demand a biopsy!               Whatevs. I've probably had it biopsied before.

This is how it works when you're the hbomb and you've got cancer.

My friend R was my brave accompanist to the PET scan appointment.  She walked to the coffee shop while I rested in a dark room for one hour, allowing the radioactive glucose to work its way into the most active cells in my body.  During her hour she gave my cancer cells, via the universe, a stern lecture on how they are not allowed in my body.  I think she also scolded my normal cells, telling them that they are not allowed to play practical jokes by pretending to look like cancer on the PET scan.  When R talks, you should listen, so hopefully my cells paid attention to her.  

For my part, during the hour of rest I used an imaginary yellow paintbrush to paint every cell in my body in health.  I started with my lungs, brain, and liver, and then I moved on to all of my bones and organs.  Sometimes my mind would wander, for example when the paintbrush reminded me of my daughters, which reminded me of Eleanor's upcoming birthday, which reminded me that I needed to order her present, which reminded me...and then I'd realize my wandering, stop it, and resume painting.  It seemed a bit disingenuous to be meditating for cellular health at the last minute; not unlike cramming for an exam.  However, I assure you that I have used this health paintbrush in meditations numerous times over the past 3 years, including in the weeks leading up to this PET scan.  Hopefully this last-minute meditation helped to reduce any cells that were considering presenting a false-positive result.        
I apologize for making you wait until Friday for the results!  I sense that many of you harbor the anxiety that I lack.  Do try to push your fears out of your mind and enjoy these lovely summer days.  They really are lovely.

Having blood in my blood feels good

As I hope you gathered from my previous silly post, I was once again hospitalized for neutropenia.  I was in bad shape last Friday--dizzy and weak with absurdly low blood pressure.  This was because I had no blood in my blood!  Dr. O said it herself, "You have no counts."  She admitted me for the weekend just to play it safe, to prevent me from catching anything infectious from Other People.  Being in the hospital definitely limits my contact with other humans and their infectious diseases, although I have a healthy fear of hospital-acquired infections.

I was a much more willing patient this time around.  The first time I was hospitalized I really did not want to be there.  I missed my system of wellness that I had at home.  This time, however, I entered the hospital with all of the tricks that I had learned the first time, plus an appreciation for not being at home.  That is, at home I incur a lot of incidental activity, such as climbing stairs and playing with the girls, that when I am super sick are perhaps better avoided in order to maximize rest and recovery.  Regarding hospital tricks, these include ordering food before you are hungry, ordering Tums before you have heartburn, and requesting bathing supplies before you actually want to shower.  I found this level of premeditation to be exhausting and frustrating the first time around, but I managed the system better this time and therefore suffered less.

Another bonus about this hospitalization is that Dr. O decided to give me a dose of blood products, specifically Red Blood Cells.  I love blood products!  To steal words from my friend M, it is truly my Go Juice.  I feel significantly better today than I did on this day three weeks ago (that is, on the equivalent day of my last hard chemo cycle, get what I mean?).  Everything is less--less dizziness, less nausea, less fatigue.  It's all thanks to someone else's Red Blood Cells, hard at work in my body.  I am grateful.  

This is a good opportunity for a public service announcement, encouraging you to consider blood donation.  I have donated blood in three different states, reaching the 1-gallon mark in one state, but I will never again be allowed to donate blood because of the whole cancer thing.  Blood donation is an easy thing for a healthy person to do, and it makes a huge difference in the lives of the unwell.  Please contact the Red Cross for blood donation information in your area.  Thank you to all of the blood donors out there, including all of my parents!

The only way to end this post is by expressing my excitement at finally being on the good side of the third and FINAL round of FEC (5-fluorouracil, epirubicin, and cyclophosphamide).  Recovering from this drug combination has been the hardest thing I've ever done--harder than my first cancer fight, two natural childbirths, writing a PhD thesis, and commuting in rushhour traffic as a 15-year-old COMBINED.  I feel positively ELATED.  I don't even care that I still have three more rounds of hard chemo to go (taxotere, herceptin, and pertuzumab--the taxotere makes it "hard").  It will be so much easier.  The worst is behind me.

If the worst is behind me, then I have reached the summit.  My brother's friend J made a movie for me on this subject.  J is a mountain climber.  He and my brother climbed Mount Rainier last month, and J was inspired to make this movie for me.  It includes footage from some of his other Rainier climbs.  The photo at the end is of my brother and I when we hiked around Rainier in August of 2010 (note the change in verb from "climb" to "hike"--my feet did not touch the mountain proper).  The beauty of this 1-minute, 20-second movie jerks my tears every time, so don't say I didn't warn you.   

   

           

Welcome!

Dear Red Blood Cells From Another Human,

Welcome to Heather's body!  We are delighted that you have made the long journey from Another Human to join us in our fight to make Heather healthy.  We are at our lowest capacity ever and desperately need a hand.  In the interest of time, we are distributing this letter in lieu of our handbook so that you can learn the ropes as quickly as possible and get to work right away.  Below is a summary of our essential regulations:

1)  We are an O-positive environment.  Negativity is not allowed.

2)  Pausing or stopping in vessels is strictly prohibited.  You must proceed with the flow of traffic at all times.

3)  Do not exit restricted borders, such as the kidneys, bowels, or sinuses.  This is particularly important because Heather is in the hospital right now and will not be released until her blood cell forces improve.  AWOL Red Blood Cells will directly inhibit this goal.  If you get lost, ask a native Red Blood Cell for directions.    

4)  Do not antagonize the White Blood Cells.  They are feeling persecuted lately and are quick to incite a riot.  It is best to flow right on past them, avoiding eye contact.      

5)  No horsing around.  She doesn't have any fevers or infections, so everything is really straightforward right now.  Go to the lungs, pick up your oxygen, and deliver it to the tissues.  It's a simple job, but we take great pride in it and would appreciate it if you would, too.  FYI gut tissue and bone marrow are high priority locations right now.    

6)  Have fun!  Heather is really great.  She has taken up meditation, which has really improved the Lung atmosphere and our oxygenation experience.  She has promised us all a feast of green vegetables as soon as she gets well.  Let's work together to achieve this goal!

Again, we are humbled by your presence and grateful for your assistance.  Let us know if you have any questions!

Cheers,

Heather's Red Blood Cells