Overcoming adversity

I had a glorious week this week.  I felt better than I remember feeling on any good weeks the last time I went through chemotherapy.  There are too many variables that prevent me from figuring out precisely why this is, but I have ideas.  First of all, my kids are independent and understanding.  They are ages 4.75 and 6.5, and while this might seem young to most of you, I would like to point out that they were 1.25 and 3.0 the first time I started chemotherapy back in 2010.  They were mere babies who needed their mommy and couldn't comprehend my sickness.  I am sure that I attended to them before I attended to myself whenever I could.  In contrast, this time I am doing an excellent job of taking bona-fide naps, not just resting.  The kiddos are happy to play with all of the wonderful people who come over to play with them and are less dependent on me specifically.  It seems likely that this is contributing to my higher energy level after I get through the chemo fog.

A second variable of potential interest is that I now practice yoga and meditation.  I started taking a yoga class once per week in the fall of 2011 (after completing treatment for my first cancer, IBC), and I absolutely love it.  I now apply these skills almost daily to help me stretch my sore bones, ease my nausea, and heal my healthy cells.  It is empowering to close my eyes and imagine the hbomb diving within to achieve these things.

It is on this high note that I went in for my second dose of TCH+P yesterday.  Dad and Ian provided good company, and even treated me to a matinee (Ian Redboxed the Oscar-nominated movie Gravity for us to watch on the laptop--it was intense and visually stunning).  The 6 hours of treatment passed quickly until...I had an adverse reaction.

The last drug administered was the C, called carboplatin.  It is known that C can cause adverse reactions in people after several doses.  Some folks can develop an allergic reaction.  Each of the two times the nurse has started dripping the C into me, she has told me to tell her immediately if I start to feel strange.

Last week I couldn't tell if the C was making me feel any more strange than all of the other junk that was pumped into me during the previous 5 hours.  I assessed myself as "fine" and we proceeded with the C. I still think that everything was fine with last week's dose.

Yesterday, however, it became clear that the C was doing something strange.  At first I thought I was making things up, because I am fully aware of the research that shows that the power of suggesting side effects can actually cause people to feel side effects (this is called the nocebo effect ("I shall harm") and is the opposite of the placebo effect ("I shall please").  But check this out--I started sneezing and coughing, my nose started to run, my lungs got tight, my throat I started to burn, my ears started to burn, I coughed up mucus, and my skin turned red.  Ian agreed that we were past the realm of the power of suggestion.  We called the nurse.

She immediately paused the C drip.  We had 90% of the dose in my body, so I felt good that the cancer-fighting was not impeded.  A substitute Dr. Oncologist came in to check on me, too, and they came up with a plan.  The nurse started a benadryl drip to tell my body to stop this allergic reaction.  Another nurse came and set up an albuterol nebulizer treatment to get my lungs to open back up.  These counter-measures worked almost instantly.  It was rather remarkable.  I quit coughing, sneezing, and mucus-ing almost as quickly as I'd started.  I will say that benadryl administered intravenously is pretty hard-core.  The drowsiness was instantaneous.  I lost control of my eyelids.

Both the nurse and substitute Dr. Oncologist emphasized that we need to clearly enunciate to my usual Dr. Oncologist just how serious this episode was.  He asked me how many doses of C I'd received?  I said that this was my 8th dose (second dose of this battle, with six doses during my previous battle).  Substitute Dr. O said that the 8th dose is when these adverse reactions typically start.  He emphasized that this reaction was a warning to us, and that subsequent doses of C will illicit even stronger adverse reactions in me.  He told me not to worry, there are other cancer-fighting drugs that we can substitute for C, and we'll just have to talk with my usual Dr. Oncologist about the options.

I was thinking, I'm already taking three other cancer-fighting drugs.  I don't suppose we could just drop the C altogether?  Hint hint?  Wishful thinking, in a way, but I am also aware that I don't want to wimp out at this important time in my life.  Must fight the cancer, must fight the cancer.

After I had stabilized they started the C drip once again.  I guess we had to finish the dose after all.  The nurse stayed in the room the whole time and wouldn't let me get up to potty.  She had to make sure that my initial reaction was the worst of it.

And it was.  My body did not complain about receiving the last dregs of the C dose.  I bet my cancer complained, though.  He he he.

Today the family walked with me to the clinic to get my neulasta shot.  It's a glorious day out there.  As you might recall from last time, neulasta is a very expensive medicine that I receive one day after chemotherapy to help my white blood cells (specifically the neutrophils) rebound.  It's the best.

Finally, I'll leave you with an image to show you how I plan to get through the week.  I have acquired more weapons than I had during my previous hard week, and I have already begun to deploy them.

From left to right, back row:  A book of healing mandalas, mini saltine crackers, gatorade (exclusively lemon lime or orange, for the record), apple juice, and a new hat supply.  Front row:  homemade stained glass kaleidoscope, Kefir yogurt drink, Accuflora probiotic pills, Imodium, real ginger ale, and a new scarf supply.    

I anticipate a week of healing, beauty, and gut control.  Or if the gut control remains elusive, at least I can turn to the beauty for distraction.

The dietary post

Last Tuesday, as I was fading into my 4th working hour, my colleague S. popped into my office and sweetly asked whether or not I still wanted her to bring dinner for my family that night.  Still?  I had no idea that anyone was planning to bring me dinner that night.  Her face transformed into a wry smile as she told me I'd better check on the meal sign-up that the L family had set up for us.

Oh my goodness!  I can't believe everyone's kindness!  Folks have signed up to bring us supper every Tuesday and Friday throughout my chemotherapy program.  These meals are so much more than we expected, and they will be incredibly helpful to my family.  We are grateful.  

Related to the meals, I have been answering a lot of questions about my diet.  I've been a vegetarian for almost 15 years, and although this is ordinary for me, I recognize that many would-be chefs aren't sure what to do without meat in the meal.  I appreciate everyone's attempts to cook vegetarian for us.  Maybe you'll find a recipe that you'll add to your repertoire.  Also, I added a "recipe" tab above in which I am going to post recipes for the delivered meals (if the deliverers provide them to me).  The first recipe is the meal that was delivered last Friday night.  So tasty! 

I'm still taking a blood thinner (warfarin) to give my body a chance to dissolve the blood clot in my jugular vein.  This is relevant because vitamin K interferes with warfarin's ability to thin my blood.  I am therefore supposed to eat a consistent amount of vitamin K so that the dose of warfarin stays effective.  Note that I'm not supposed to avoid foods containing high amounts of vitamin K, such as kale and spinach, merely to eat them consistently.  The only time this is a challenge is the week after chemotherapy when eating in general is off the table.  My vitamin K consumption is probably somewhat consistent otherwise.  Salad season is upon us, so if my vitamin K consumption gradually increases my oncologist will be able to see that in my bloodwork and increase my dose of warfarin.  No worries.    

The major dietary bummer is that I can no longer drink tea.  I LOVE tea, especially green tea.  I have been drinking a cup of green tea nearly every day for several years.  The reason I can no longer drink tea is because it is high in antioxidants.  I am no longer supposed to take antioxidant supplements, and tea counts as a supplement.  Dr. Oncologist also told me to stop taking the daily vitamin that 3 years ago she told me to start taking.  

The explanation for this is rather ground-breaking.  Earlier this year a study was published showing that antioxidant supplementation of the mouse diet led to three-times larger tumors in mouse lung cancers.  Also, the antioxidant-supplemented mice died twice as fast.  

The scientific and medical community have been dancing around this conclusion for years.  Previous antioxidant supplement studies had not shown benefits in folks who already had cancer, and sometimes supplementation led to worse outcomes.  The paper published in January begins to define a mechanism for why lung cancer likes antioxidants, and I'm sure that studies with other cancers aren't far behind.   

To be clear, all of the research is focused on supplementary antioxidants.  There is no information to suggest that I should be avoiding foods that are high in antioxidants.  Besides, I still have a body full of healthy cells that I'm sure could use a few antioxidants now and then.  Dr. Oncologist says to eat my normal, healthy diet, and simply avoid supplementation with antioxidants.          

In the meantime, does anyone want my bottle of daily vitamins?  It's almost brand-new.  I also have a nice stash of tea, so when you come visit remind me to brew you a cup.  

Strangers

I have a lot of strangers in my life lately.  Folks I don't know have offered me hugs, food, and money, all of which I accept with the most gratitude and humility I can reasonably express without bursting.  Today seems to have been particularly filled with strangers.  For breakfast we ate Bruegger's Bagels that a stranger left on our front porch.  Normally the rule is not to accept food from strangers, and it seems that accepting food from a stranger you did not meet should not be an exception to that rule.  It was, however, a delicious exception.

Did you leave the bagels for us?  We'd love to give credit where it is due.  Next time, please stick around and have a bagel with us.  

Another stranger has presented itself via a thoughtful parcel from Ian's cousins.  Among other fun things, they sent several different bottles of scented lotions.  They are fancy lotions, too, and my skin loves to drink them up.  I have been using them every day, but I am not used to scented lotions.  I usually buy the unscented kinds.  The first day I wore these fancy scented lotions Ian gave me a hug and said, "You smell like a stranger!"  Then he watched me apply the new lotion to my chapped nose (my chemo cold has been a doozy!) and commented that I would be smelling a stranger all day.  He was so right!  But my nose was so moisturized that it was totally worth it.  Plus, I like the smells of the lotions.  They smell nice.

One reason I'm liking the lotion smell is that I don't like my own Heather smell anymore.  Everyone has a non-perfumed smell, right, ranging from just-out-of-the-shower to when-was-your-last-shower.  Well, my normal just-out-of-the shower state is altered.  At first I wondered if my olfactory system is what has altered rather than my bodily odor, but in preparation for this blog post Ian confirmed that I have a different smell.  The chemotherapy makes my sweat smell differently, I guess.

I smell like a stranger even before I apply the scented lotion, so I may as well be a moisturized stranger.

In other updates, I've worked six hours per day for three days this week.  Huzzah!  It has been marvelous to interact with colleagues and to engage my brain.  I work with some amazing folks who, in my absence, executed a new and intimidating protocol to prepare some DNA for sequencing.  Other amazing folks started a rebuttal for resubmitting a manuscript, making it easy for me to jump in and finish it off this week.  They are also understanding when I get tired and need to take care of myself by heading home early.

I love my science family!  I love my friend family!  I love my family family!  Apparently I also love my stranger family!  You all are the best.  

Guts and lungs and blood, oh my!

I've had several loved ones remark that this hard chemotherapy event seems to have been harder on me than the previous rounds.  It is so hard to evaluate whether or not this is actually true because I don't have the best memory of the hard chemos.  My survival strategy was and is to sleep through the crappiness.  That said, dear readers, we don't have to rely on my feeble mind because we have this blog in all of its searchable splendor.  I present to you evidence that this round of hard chemotherapy was not necessarily harder than it was before.

Two days after my first hard chemo ever:  Turtle

Six days after:  Side-effect roulette

Eight days after:  Lurking fatigue

And finally, a summary in which it is implied that I spent 10 days being sick per hard chemotherapy:  The 60th day

I think that my loved ones have blocked out memories of the chemo crappiness just as much as I have.  No one likes it when the h-bomb is out of commission for such an extended period.  No one.  Also, as my friend F pointed out, I tend to put on a happy face (happy fingers?) for the sake of a blog post, then retreat to the couch for a few more days until the worst has passed.  When it gets bad I don't feel like doing anything, least of all blogging.    

That said, I am on a mission to find ways to make the next round of chemotherapy better, such as by not having a fever on the day of hard chemo (!) and by improving the gut-control strategy.  My guts have been out of control, both with nausea and with things that a lady simply does not blog about.  [I'll let www.cancer.org explain the latter issue with the following side-effect of one of my drugs, taxotere:  This drug can cause diarrhea, which in some cases may be severe. If left unchecked, this could lead to dehydration and chemical imbalances in the body. Your doctor may prescribe medicine to help prevent or control this side effect.]  Check the dehydration box on that one.  I needed IV fluids this past Friday, so hopefully I can prevent myself from getting to that state again next time.  

Speaking of Friday, I have thrilling news.  I will not be receiving chemotherapy every Friday!  I will still be receiving all of the drugs (TCH+P) every third Friday, just no additional dose of H+P on the intervening Fridays.  This is a delightful turn of events because even though the H+P have virtually no side effects compared to the T and C, it is still mentally and physically exhausting to receive this therapy.  I know this to be true because it's what I did the first time I went through chemotherapy.  Also, do not fear that I am getting short-changed on cancer-fighting drugs with this new schedule.  My understanding is that I'm getting a higher dose of H+P every three weeks instead of lower doses every week.  In summary, I still have an appointment every Friday so that Dr. Oncologist can check on my health and on the cancer's death, but treatments will only be every third Friday.  

Huzzah!

Another update is that my dad drove me across the state today to meet with a new medical professional on my team, Dr. Pulmonary Oncologist.  He and the medical resident approached the problem cognitively (good word, dad!) and asked thoughtful questions about my problem.  Two good things came out of this meeting.  First, he took a few samples of my blood to test for possible lung infections.  One of these, histoplasmosis (hey K, that's what you studied in grad school!) is caused by a fungus that is endemic to this region.  The other, coccidioidomycosis, is caused by a fungus that is endemic to the southwestern United States, which I have visited within the past two years.  He doesn't think that these causes are as likely as metastatic breast cancer, but he decided that it's good to rule them out because chemotherapy could make them worse.  

Secondly, he said that he (with a surgeon) has the technology to perform a biopsy of a few of the innumerable pulmonary nodules.  It requires much bravery to say that this is excellent news.  The reason this is good is because we'll never know what the nodules are without sampling them, and if they don't go away with chemotherapy we'll need to know what they are in order to treat them with something else.  We are all still hoping/praying/willing them to be gone at the next PET scan in a few weeks, but if they're still there, I now have a guy who can help.  Dr. Pulmonary Oncologist.  The reason this requires bravery is because...well...lung biopsy.  Right.  Sign me up?

I'll leave you with one final piece of data that first requires me to express my gratitude.  Thank you all for pulling strings with the universe regarding my circulating tumor cell test.  This was the blood sampled last Monday and sent off to the Mayo clinic.  My result falls into a category called, "favorable".  They detected tumor cells in my blood, but they only detected 3 tumor cells per 7.5 milliliters of my blood.  Clearly zero tumor cells in my blood would have been ideal, but given all of the other pieces of data (cancer in the lymph nodes, cancer in the lungs) I am truly grateful for this "favorable" result.  Thank you all for your positive energy and light.  Let's celebrate this small victory. 

I am also so, so grateful for all of the visitors, letters, food, and parcels.  I was not satisfied with my blog-based mechanism of expressing appreciation during my first cancer fight, so I plan to employ a different system for this round.  In the meantime, know that we received your love, it was appreciated, and I have a simple plan to dispatch personal "thanks" very soon.       

Smiling

I'm emerging from the depths of chemotherapy at last.  I started the day with a walk, during which I marveled at the blue skies, chirping birds, and frozen fractals on the ground.  Then I was spent and needed a rest, but look how quickly I rebounded!  Already I have energy for typing, whereas yesterday I would have slept for two hours to recharge.  My fingers are moving faster than yesterday.  If only I could figure out how to stabilize my guts, then I'll have this situation under control.

One hard chemo down.  Done.  Past.  Complete.

Yesterday was a hard day, so to combat it I took matters into my own hands.  Instead of being afraid of dying of cancer, or of feeling sick forever, or of my hair falling out, I gutted the fear with the blunt blades of childrens' scissors.  My daughters wielded the scissors.  My brother made the video (with a little help from Google's Auto Awesome).

After the haircut Ian buzzed my whole head for me.  Now I'm ready.  Let's do this.

Let's make this a multi-media blog post all around with another reason that I'm smiling today.  Every day, someone has to flush my Picc line for me.  The picc line deserves its own post and explanation, but here is the situation in brief:  it is a long (50 cm?) internal tube that threads up my arm and into a big vein.  An external portion is taped to my skin on the underside of my right arm, just above my elbow.  The external portion has a button in it, and through this button folks can get blood out or put medicine in.  Ten mls of sterile saline needs to be injected into the button every day that the picc line is not being used for something else.  I can't do it myself because I only have one hand that can reach it.

Enter my brother (the OC).  He has been flushing my picc line for me every day, and today it came to light that he enjoys doing it.  He said he's always wanted to do something like this, ever since that scene in Con Air when Nick Cage has to inject his own heart in order to save everyone.  OMG, I was dying laughing!  First of all, that movie came out like a million years ago; secondly, imagining Nick Cage flushing my picc line to save lives is hilarious; thirdly, wasn't it actually The Rock, NOT Con Air?  But what's the difference, right?  LMAO.  Ryan couldn't find the precise clip on YouTube, but here is a scene from The Rock that explains the situation.  Trigger alert:  terrible language, stressful situation.

That's all for now.  I need to go find more crackers.  :)

Booby traps!

I'm pretty sure I'm feeling better today.  I feel so far from myself that it is difficult to evaluate.  I have a package of saltine crackers on my lap to help me get through this blog post.  Nausea has been a primary enemy, second only to fatigue.  Bone-crushing fatigue.

This morning a new, spirit-crushing enemy was revealed:  magazine articles about people dying of cancer have infiltrated my home!  I was working hard to eat some cereal and decided to flip through an issue of Glamour that someone brought over for me.  I wasn't even LOOKING at it and before I knew it there was an article about this guy dying from cancer.  It was written by his wife and mother of his 3-year-old son.  !  The cancer had moved to his spine and and and ahhhhhh where did those lipstick pages go?  I tossed it aside and reached for a local magazine.  This magazine is mostly advertisements, so I thought I was safe.  Wrong!  Lurking behind the glossy automobile ad was a one-page article about the happy memories this girl had of exercising with her dad before he died of colon cancer.  !

Needless to say, the OC made a sweep of the house and threw out all magazines.

This was not a good way to start the day, but thanks to the OC I am turning it around.  We have a Cuban Jazz Combo station playing on Spotify.  I got out my yoga mat and did some stretching.  I opened the computer for the first time in several days.  I have caught up on reading all of the delightful comments from you all.  Now I am tired.  Cancer-fighting is exhausting!

ps When I am done with this cancer fight, please remind me to write a different kind of magazine article and submit it to Glamour.  

Heavy

Everything is heavy.  My bones are heavy.  My head is heavy.  My guts are heavy.  Even my eyelids are heavy.  When they close my eyeballs typewrite messages to myself across them.  "Don't forget to flush your PICC line."  "Fill out your timesheet."  "Drink more water to flush these steroids out of here so that you can get some sleep."

My brother is here.  He was my "offensive coordinator" (OC) for most of my hard chemotherapy sessions the last time we went through this.  I am so grateful that he returned to do it again.  He is currently working his tail off, trying to get my ladies in bed despite the time change.  Gotta love the OC. 

He took me on a walk today.  I made it all the way around one block.  I was proud.  I couldn't believe how much snow had melted since yesterday. 

I had to ask Ian and the OC how long I will be this way.  I just don't remember the details from last time.  They think that I'll hit the low point on Tuesday, then start turning back around.  Wow.  I'm halfway to the low point.  Okay.  We've got this.  Five more times.

Time to turn in again.  Not that I ever really got up.  What day is it again? 

The Zone

It's done.  The first batch of hard chemotherapy drugs have now entered my system.  Operation kick cancer's a$$ (as you all have so aptly named it) has officially begun.  I am relieved to know that cancer's hall pass was officially revoked today.

And now I am in what I previously called The Zone.  The dexamethaSONE.  I had forgotten all about this particular side effect.  Dexamethasone is a steroid that they administer intravenously before giving me the hard chemo drugs.  It helps to keep the nausea at bay.  Today it has had a bonus effect of clearing my congestion.  It also makes my heart race and my cheeks flush.  This blog post would not be happening without The Zone, because I was dozing in my chair a few hours ago, but now I'm getting more and more amped by the minute.  Dance party, anyone?

This brings up something that I've been mulling over.  Should I re-read my old blog posts or shouldn't I?  I know that there are some gems in there, but perhaps some things are best left to be rediscovered.  Like childbirth.  The mind copes by forgetting the worst of the pain (labor) and remembering the best of the process (baby).  Perhaps chemotherapy is similar.  I've forgotten the worst of the pain (secondary infections? fatigue? hot flashes? etc. etc. etc.) and only remember the best parts (that I'm alive and won't have to shave my legs for five months).

Today I learned the chemotherapy plan and can at long last tell you about it.  I have 18 weeks of hard chemotherapies ahead of me.  We'll repeat what we did today again three weeks from today, and so on until we've done it 6 times (huzzah for being done with one!).  Here's what we did today:

1) Pertuzumab.  It is a brand new drug (clinical trial results published in 2013) against the Her2 and Her3 receptors.  I am the first person in my clinic to use this drug.  They ordered it special, just for me.  It took 1.5 hours to administer.  It has essentially no side effects.  Interestingly, it is unclear if my insurance will cover this drug since it has not been approved in the metastatic setting (stupid innumerable pulmonary nodules!).  However, one of the drug companies who makes it is offering pertuzumab for FREE to patients who qualify (based on income).  The clinic filed my paperwork last night, and at 8 am this morning called to tell me that I qualify!  Huzzah for all of these people who worked their tails off so that I could receive this drug today and not have to worry about potential insurance issues.  It brings me to tears.  I am grateful.

2)  Emend and Dexamethasone.  I already told you about dexamethasone.  Emend is another potent anti-nausea drug.  Together these drugs took one hour to drip into my system.  These drugs are administered after the pertuzumab because they need to be given before the hard drugs (numbers 4 and 5), but the pertuzumab and the herceptin (number 3) need to be administered an hour apart.  I've got a complicated program.

3)  Herceptin.  Herceptin is another Her2 inhibitor.  It has essentially no side effects except possibly on my heart.  With both herceptin and pertuzumab we have to keep an eye on my heart because these drugs can weaken it.  I'll just have to override that and stay strong.    

4) Taxotere.  Sigh.  This is a general mitotic inhibitor, meaning that it inhibits rapidly dividing cells like cancer cells.  It is not specific to cancer cells, however, so other cells that rapidly divide are also inhibited.  This includes hair follicles, nail beds, and bone marrow.  This drug took an hour to administer.

5)  Carboplatin.  Double sigh.  This is another general mitotic inhibitor.  I was just told today that sometimes the body remembers carboplatin and doesn't like it, so I'm supposed to be on the look-out for unusual side effects, like perhaps extra tingling in my extremities or something.  It's going to be hard to notice extra side effects on top of the side effects, but I'll try.  This drug only took 30 minutes to administer.

That's the scary part of my program, to be repeated at three week intervals for a total of 6 times.

The second aspect of my program will be Friday dosings of numbers 1 and 3 above.  This will happen every Friday throughout the scary program.

Additionally, somewhere in the middle of chemotherapy I will have to do another round of tests and scans to check on the "lung metastases".  If they are gone, we will proceed with chemotherapy as planned.  If they are still there, it's possible that we'll have to come up with a new strategy.  Chemotherapy, surgery, and radiation are all dependent on what those lung spots do.  But they're going to be gone, right everyone?  They're probably gone already.  ;)

I have one thing for which I need your help.  On Monday I have to give another blood sample for a different test (but they can now use my PICC line, huzzah!).  It will be a test to see if there are cancer cells in my blood.  We really do not want there to be cancer cells in my blood.  Could you please help me with this idea?  I've been using my mind powers to keep the cancer cells quarantined, but it seems that I could use a bit of help in this arena.  Thank you for your energy.

Thank you for the support we had today, both physically and mentally.  When we got to my appointment and were told it would be 6 hours, we realized that it will be impossible for us to do this day without some help.  Thank you so much, dad and aunt J, for spending your day with us.  Thank you, MIL, for spending your evening with us.

It is coming.  With every passing moment I feel myself getting farther and farther away.

A bit of sentimental silliness

Right arm

You are long
You are strong
You are my right arm, right arm

Tickling baby's backs as they fall asleep
Reaching the unreachable on high shelves
Cradling the left arm after surgery

You are my right arm

Now you have made a sacrifice for me
You have a line piercing your underbelly
Running up up up around the shoulder
Yet I am not to favor you at all
I am to treat you like nothing has changed

Right arm

I am sorry that this happened to you
Thank you for what you are doing for me
You will always be my right arm, right arm

Acceleration

Dr. Oncologist's nurse just called.  Pick line will be placed in my arm today.  This is an extra long catheter that gets threaded through a vein, all the way up my arm.  They are doing this instead of a port (for now) because I am on blood thinners for my jugular clot.  Perhaps in a few weeks, once the clot is gone, I will stop blood thinners and then we can put a port in.

My oldest daughter and I woke up with fevers.  Because of this, Dr. Oncologist wants me to take antibiotics to prevent a secondary bacterial infection.  I HATE the principle of prophylactic antibiotics, but I suppose if ever there was a person who needed them it's the person who's about to start chemotherapy.  She said that we will start chemotherapy tomorrow.  That said, the "chemo on Friday" conversation occurred before the pick line conversation, so it's entirely possible that with the pick line in today I could start chemo today.  I have no idea.  They've been calling every 20 minutes with updates.

Also because of the fevers, Dr. Oncologist wants me to take the girls to see a pediatrician.  Their symptoms are not the type that would normally inspire a doctor's visit, but again because of my impending immunocompromised state she wants me to make sure that the kids aren't sicker than they appear.

I've already called in the troops.  My dad and my mother-in-law are both on their way over.  She will take the kids to their appointment, he will come with me to mine.  Normal things that are supposed to also happen today is kindergarten registration for my youngest, and gymnastics for both girls.  Ian will rock out the normal things.

This is really happening.

Data or Denial?

Oh my, I am tired, so this might be shorter than anticipated.  I'll start by saying that Dr. Medical Oncologist was beyond amazing.  She spent over two hours on my case, some in my presence and some pouring over my scans with radiologists.  In addition, she told me that she serves her professional society on a committee that keeps their eye out for the latest research on Her2 cancers.  Her addition to my team leaves no doubt that I am about to receive the best treatments that are available.

Regarding my treatment, she thinks that I should receive chemotherapy before mastectomy.  This is consistent with what Dr. Oncologist said on Monday after the PET scan results that showed lung metastases.  The drugs will be TCH+P (taxotere, carboplatin, herceptin + pertuzumab).  I had the TCH  combination previously, only the P will be new to me.  It is the C that will make my hair fall out, etc.  On Friday I'll discuss the plan with Dr. Oncologist, and we'll set dates.

No one has yet gotten past surgery with the planning, so I do not know what radiation is in store for me.  It is probably dependent on what the lung metastases do during chemotherapy, because if they don't respond perhaps there are radiation treatments against them.

About those lung metastases (mets)...

The lung result was devastating on Monday, so devastating that I did not question them.  However, today I am full of doubt about the lung mets and hopeful that they are false.  Here's why.

On Tuesday I started to feel a scratchy throat coming on.  I fully thought it was psychosomatic, like my body was trying to FEEL the lung mets down in my respiratory tract.  When at dinnertime my daughter said, mom, I have a sore throat, my head jerked in her direction.  Curious, I thought.  Additionally, in the middle of the night my other daughter developed a disruptive cough.  As I was laying in bed wishing her cough would cease so that I could get some sleep, I realized that we probably caught this cold on Saturday from my nephew.  Nephew!  Saturday!  Could I have been organizing an immune response to this infection on Monday, such that it would be seen as increased metabolic activity on the PET scan?

My symptoms have since turned into a true cold.  I asked Dr. Medical Oncologist if this burgeoning cold could have led to false positive lung mets on the PET scan.  She said that it is possible, but the radiologists she consulted said it was not PROBABLE.  She also examined me and said that at that time I did not have "clinical symptoms" of a respiratory infection.

I seem to be short on clinical symptoms lately.  My cancer went undetected on ultrasound, mammogram, and breast MRI.  It was only a biopsy that yielded the diagnosis.  Also, I am the queen of false positives on PET scans (PET scan false positives have previously put me through a spine biopsy and a colonoscopy, both of which showed "normal" cells and tissues).  I daresay that for this patient false positives are PROBABLE.  

I'll end my rant there.  I don't really care if I have synthesized this crazy-ass story as part of a fancy denial strategy over lung mets.  This non-lung-mets scenario gives me significant hope.  Also, my dad pointed out that the lung mets have also been good for putting everything else in perspective.  Where on Sunday I was dreading chemotherapy, chemotherapy is no longer the worst thing I have in front of me.  Lungs!

There's no way to know what's going on in my lungs without a biopsy, and the nodules are all too small to biopsy (largest one is a mere 9 mm).  Right now my expectation is that they will be gone on the next PET scan in three months.  We'll never know if it was the chemotherapy that cleared the "lung mets" or simply the resolution of the common cold.  But they'll be gone.  You'll see.

4 days

Today was anything but normal, but there were certainly bits of normalcy to which I clung.  The bits that were abnormal were either sad or comical, with very little in between.

I woke up feeling discombobulated.  Ian had already left for work, and I was alone for a few minutes before waking up the girls.  I got up and started my routine, but then at some point realized that I had been standing, immobile, for 4 minutes.  I shook myself out of it and resumed the business of getting two young humans ready for their days.  I assure you that I was henceforth sufficiently occupied to prevent further immobilization.

Until I dropped them off at school.

Uncontrollable tears streamed down my face as soon as I put the car in park in the parking lot at work.  I got out my phone to redirect myself from my inner fears.  This plan backfired, however, when I checked Facebook and saw all of the things my dear friends S and T had started in motion and all of the support that was already blossoming.  Big fluffy peonies of support.  I turned off my phone and sobbed for nearly 15 minutes.

I pulled it together to start my day, round 2.

On the way to my cubicle I passed two 50-gallon drums that were collecting water.  This water was allegedly leaking from a fat drainage pipe that was collecting snowmelt off of the roof.  Since I work in a laboratory, I was pleased to know that it was roof water and not lab water, but I nonetheless took the leak a bit personally.  After everything that is going on with me, the door 10 feet from my office (i.e. MY door) is being blocked by this leak?  Come on.

Then I spent well over an hour hugging folks and trying not to cry.  (I succeeded maybe 2 out of every 5 attempts?  Not bad.)  It's temping to say that the support is overwhelming, but that's not true.  Responding to the support is overwhelming, but receiving it is lovely.  I mostly just feel bad for putting you all through this.  But I can get over that and simply accept a hug.

With a freshly brewed cup of gunpowder green tea, I sat down to start turning off burners.  I opened my email and started emailing collaborators, editors, and colleagues about things that I'll no longer be doing.  Some things were sad, like cancelling a graduate student who I was to host in April.  I still feel terrible about that but do not doubt my decision.  Other things were happy, like the collaborator who responded within minutes to say that he'll get my analyses running right away (nothing like cancer to put a flame under your butt, I guess).  Most were just down-to-business, I-won't-be-here-for-awhile-so-you're-going-to-have-to-wait-or-find-someone-else-to-do-this.

Amidst these decisions and delegations my friend S came to invite me to join her for lunch.  She asked me when I wanted to eat, and I honestly had neither the knowledge nor inclination of lunchtime.  My nervousness has destroyed my appetite.  I was content to follow her and eat my lunch at anytime.  So we ate lunch in a conference room.  Near the end of lunch, my other friend S popped in to tell me that my office was flooded.  And I thought that the my obstructed doorway was personal.  Snort.

Thus began my day, round 3.

I tried to take the main hallway to my cubicle, but there was over an inch of water at least 20 feet before "my" door with the 50-gallon drums.  So I attempted a different route, through the laboratory space.  There was water on the floor of my laboratory.  I kept weaving through labs until I found a dry one through which to reach my cubicle hallway.

I tiptoed through the water to my cubicle.  S was there when the water started rushing, so I am grateful to her for unplugging my computer and picking my bag up off the carpet.  I packed up my laptop, grabbed my belongings, and evacuated my cubicle just as the safety officers were coming to kick us out of the area.  As soon as the water flooded my laboratory, which is directly across the hall from my cubicle, the flooding became a safety hazard.  Oh my.

I took refuge in my friend L's cubicle.  It was delightful to have a cubicle buddy for the day.  My office would have been too lonely for the day, anyway.  We visited a bit, shared a cupcake, and mostly enjoyed a study vortex (nerd salute to my college friends) for the afternoon.

L also reminded me about my neck thingy.  I had forgotten all about my neck thingy!  I called Dr. Oncologist's office and spoke with my treasured nurse.  She said that Dr. Oncologist wants me to start taking a blood thinner.  This will give my body a chance to dissolve the clot on its own.  I took my first coumadin this evening.  That is all there is to say about the neck thingy at this point.  We'll check on it again, I'm sure.  It will be gone when we check on it.  Stupid PET scans.

After many tears and emails it was time to head home where I seemed to begin this day one more time, round 4.

This was by far the best day of my days.  My girls were on fire tonight!  They colored pictures, they told jokes, they whispered secrets like "let's have a tea party" while gripping my head between both of their hands.  I therefore prepared a tea party despite the fact that it was a bath night (baths are yet a time-consuming endeavor in our house).  In their bath they sipped warm honey-water, each blue plastic teacup adorned with a stale cinnamon stick.

Afterwards they rushed upstairs and said that they were preparing a show for us.  The parents were banned from the upstairs for a full 10 minutes.  Ian and I embraced the ceremony of it all by arriving upstairs arm in arm.  Their art easel was relocated to the hallway, and on it they had written, "Princess Drip Drop Ballet     Welcome Mom and Dad    Good Luck", complete with a sketch of Mom and Dad.  They had arranged their play room to accommodate a stage and seating.  The two step stools from the bathroom were wedged in the play room doorway, with matching throw pillows placed on top of each stool.  Ian and I squeezed onto our seats and were treated to a marvelous show of dancing and singing.  Each composition was an original work of art.  There was even an encore.  It was magical.

And now my day of days is over.  With the performance fresh in my mind I am ready for a good night sleep in preparation for whatever tomorrow will bring.  My dad will be here before 9 am, and we'll hit the road for my distant appointment with Dr. Surgical Oncologist and colleagues.  Tomorrow I will get a better idea of what my treatment plan will look like.

Pros and cons

Please bear with me.  I have a lot of news to report, none of which is delightful.  I've decided to break this post up in to a list of pros and cons, to help me get to the end of it.  I'm going to do my best to weigh it down with pros.

Pro:  I exited my PET scan to find my aunt, uncle, and mother-in-law seated in the waiting room.  It was a delightful treat to find these loving people ready to spend their day with me.

Pro:  After another blood draw, they took me out for breakfast.  The best restaurant in town had just today released their new spring menu, and we were among the first to enjoy it.  I had a chocolate croissant for dessert.  Tasty!

Pro:  We all went to my mother-in-law's home to pass the time (about 1.5 hours) until the PET scan results appointment.  I decided to call Dr. Radiologist to see if they had my breast biopsy results yet.  She promptly returned my call to say that yes, the results are in.

Con:  My breast biopsy showed cancer, ductal carcinioma, stage 3, Her2 receptor positive (estrogen receptor and progesterone receptor negative).  I'm calling this a "con" because it is stage 3, and I simply could not truthfully in any way make this a pro.  However, there are silver linings.  There is one thing worse than a stage 3 cancer, and that's a stage 4 cancer.  At least it's not stage 4.  Also, Her2 positive is not the easiest kind of cancer to fight, but even that has a silver lining--there are treatment options for Her2 positive cancers.  Worse would be to have breast cancer with no recognizable receptors (a so-called triple-negative).  I asked her to please call Dr. Oncologist and share this news with her before my appointment.

Pro:  My dad arrived and joined the entourage.  Huzzah!

Con:  I knew right away that it was not going to be a pleasant appointment when Dr. Oncologist started by saying, "let me show you your pictures."  She doesn't usually show me my pictures unless I ask.  She scrolled through the PET results of my entire torso from bottom to top, slowing down on my lungs.  Lungs.  My heart plummeted.  She's always told me that there are three place where you do not want the cancer to go:  brain, lungs, liver.  Everything else is treatable, but these three things are tricky.  And now she was showing me my lungs, and talking about my lungs, but I walked into the room with breast cancer?  Lungs.  Oh God.  

Con:  "Innumerable pulmonary nodules consistent with metastatic disease"  That is what the radiologist's report says.

Con:  The breast cancer has spread to my lungs.

Pro:  Although the nodules are too numerous to count (TNTC in microbiology speak, nerd salute to all of you folks counting cfus today), they are small and faint.  That means that they weren't gobbling up the radioactive glucose, just moderately over-eating.  I'm also hopeful that they will respond to treatment better than something big?  Lots of surface area to be killed by?  I'm ad-libing at this point.

Pro:  The discussion of the pathology of the breast cancer was a poor second act after the lung business.  The good news from this discussion is that they think it's a new cancer, not a remnant of my IBC.  The reason I am taking this as good news is because it is easier for me to think that I responded well to the previous treatments, giving my previous inflammatory breast cancer (IBC) the middle finger and getting it out of me completely.  If I thought that this new cancer was actually a remnant of the old cancer, I would puzzle over why it didn't leave the first time and I would doubt in my ability to get rid of it anew.  Under the model that it is a new cancer, I can believe that I can get rid of it again.  If it truly is new, I can even claim that I'm really good at getting rid of cancer and simply rely on those skills.  After all, I did beat the IBC odds.  I lived so long after IBC that a new cancer had time to develop.  I just have to buckle down and get rid of this one, too.

Con:  Fucking lungs!!!!!!!!!!!!!!!!!!!!

Con:  The PET scan had one more treat in store for me.  A blood vessel in my neck (please forgive me, it's been such a long day that I've forgotten precisely which one) showed a clot.  Dr. Oncologist asked me if I had any neck pain, headaches, etc., and I literally chuckled at her.  After all of this new metastatic breast cancer business, the PET scan decided to reveal a new terrorist:  a blood clot on the boulevard to my brain.  Fantastic!  And just a tiny bit hilarious because of the potential dichotomy it presented:  I will either die slowly and methodically at the hands of metastatic breast cancer, or I will drop dead right now from this blood clot throwing a wrench in my brain.  Bam!  Ian and I shared an odd, choking laugh over this.

Pro:  The entourage was there to walk me to the radiology department to have an ultrasound on my neck.  If ever there was a day for an entourage.  Whew.  Dr. Oncologist called me tonight with the ultrasound results, but I was at yoga and missed the call.  She did not leave a message, so it must not be terribly critical.  The only preliminary result I have is from the ultrasound tech, who when asked said that it is not 100% occluded (blocked).  Yay?

Pro:  Yoga!

Pro:  Husband!

Pro:  Daughters!

Pro:  Entourage!

Pro:  Food made by the hero of the day, my mother-in-law!

Con:  Lungs!

Con:  I think I need to puke.



Here's where we go from here:  appointment on Wednesday with someone in Dr. Surgical Oncologist's department to formulate a treatment plan.  Appointment on Friday with Dr. Oncologist to solidify treatment plan.  I'll try to have normal days on Tuesday and Thursday.  I said I'll try.