Optimistic

Today my dad and I made another trip to the other town to visit my other oncologists.  The driving conditions were perfect:  clear roads and overcast sky.  The highlight of the road trip entertainment was the electronic over-the-road sign that broadcasts traffic updates.  Today it read, "Hey bobblehead stop looking at your phone."  We crossed the state and passed under at least three of these electronic signs, all of which said the same thing.  That guy or gal has too much fun.

The purpose of this trip was to deliver disks of my recent PET scan and to get their opinions on my continued treatment plan.  We first saw Dr. Medical Oncologist.  She was thrilled with the clean PET scan result and agreed that it couldn't have been better.  She thinks that I should continue to have PET scans every 3-4 months for now, and that I should see her again in 6 months.  She also maintains that I should continue the Herceptin+Pertuzumab treatments indefinitely.  I asked her about side effects on my heart, or what we should do if my body decides to reject this treatment, and she said that it would have to be pretty bad to get her to quit the treatment.  Her2+ cancers (that's mine!) are nasty, so it's better to suffer a bit of heart damage than to risk the potential consequences of ceasing the treatment.

That led me to a question about prognosis.  A few people at work have asked me about it, and I haven't known what to tell them.  My prognosis is technically "poor" because the best evidence suggests that I had (have?) stage 4 cancer.  That's cancer that has spread past its original source into an incurable location.  My question for her, then, is whether I should tell people that my prognosis is poor even though I am clearly doing so well and have unproven metastatic lung cancer that has nearly gone away? (I'll discuss the "nearly" part next.)  She then looked me in the eye and asked if I wanted her answer based on the previous data, or if I would settle for the word "optimistic".  The reason for this cryptic response is because I am on a therapy that has only existed for a year, and I have been on this therapy for its entire existence.  There are no previous data points on which to draw that would answer my prognosis question.  The previous data points didn't have the awesome treatment that I'm on.  Therefore, her expectation and her hope is that I will do better than what the available data would suggest for me.  I am the new data point.  I therefore opted to decline the technical answer to my prognosis question and accepted the word optimistic.  It suits me better, anyway.

Then dad and I took an intermission to inhale our lunch at our favorite falafel joint in the universe.  Oh man was it good, but we ate way too fast.

We scurried back to the clinic to meet with Dr. Pulmonary Oncologist.  This ended up being every minute worth the drive and the wait!  He pulled up images of my chest CT from last February and from the recent scan.  The chest CT is always taken at the same time as the PET scan.  The difference between the two types of images is that the PET is colored based on the radioactivity that my cells take up, but the chest CT is more like a standard x-ray.  So although the PET scan showed completely normal cellular activity, Dr. Pulmonary Oncologist scrutinized the CT images for abnormalities, which he found and showed to me.  He put my pre-chemo chest CT on the left, then my January 2015 chest CT on the right.  He had used the glowing data from the PET scan to find the suspected cancer nodules on the old chest CT.  Then he found the matching image on the recent chest CT.  What he pointed out to me is that when you look at the two CTs side by side, you can still see a trace of each nodule.  He said that they are less than 90% of what they were and that the extent of their diminution is better than expected.  He said that without a biopsy it is still impossible to concluded whether or not they were or are cancer--they could be cancer that has responded to treatment, or they could be my body healing a lung infection or scar tissue from an infection.  No matter what, the news remains excellent.  He said he doesn't need to see me again unless the pendulum swings back in the other direction; that is, unless the nodules show activity on the PET scan or start to grow again.

I also gave him my email address, because his son is an undergraduate interested in veterinary medicine and gut bacterial communities.  I study gut bacterial communities, I have a veterinary pathologist postdoctoral fellow starting in my lab in March, and I have a job opening for a summer student.  Small world.

It was another great trip with a whole pile of good news.  I hope I can stay on this trajectory for a long while.  

   

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.

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                                                               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.

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.    

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.       

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.

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.