It's begun!!

Oh man, where did we leave off?  Seems like so much has happened since my previous post!

So...I started whole-brain radiation today.  Yes indeed, already.  Getting Lloyd under control without further ado!!  Dr. Radiation Oncologist's office called me yesterday, on a Sunday, at 11:00 am, to tell me that they had completed the radiation plan and were ready to set up an appointment for treatment on Monday, what time would work for me?  After sputtering for awhile, I agreed to take the 11:30 appointment.  It was a somewhat jarring phone call!  Certainly not something I expected after finishing my brunch of egg and mushroom scramble.

The radiation treatment is interesting, albeit a little bit freaky.  Here's how it works:  I lay on the platform, they put the mask over my face/head and have me scoot around a millimeter at a time until I get positioned just right.  Then they move the platform until I'm lined up with some red and green lasers to get the coordinates just right for the treatment, then they take a scan (I think it's a brief CT scan of my head) and tell me that everything has lined up perfectly, and I make a joke about how if I could move the tumor I would have done so a long time ago so of course it's lined up perfectly.  Then they re-position my platform for the radiation.  My hippocampus-sparing radiation plan includes 9 fields of about 30 seconds each, so the whole thing takes about 20 minutes (after factoring in the time for the re-positioning of the table and equipment between fields).  The freaky parts:  1) some of the fields caused me to smell an ozone smell, and 2) some of the fields caused me to see bright, flashing blue light with my eyes closed.  If I opened my eyes, I couldn't see the blue light anymore. Super weird!  My own personal irradiated brain disco party.  Question for B, my bonus mom:  Can you explain the blue light thing?

Delightful part of radiation treatment:  I was treated by one of the dear nurses who took care of me back in the day of my twice-daily chest wall radiation, and she remembered me.  She gave me her arm when she called me from the waiting room, and ceremoniously walked me back to the treatment room.  Also, I had forgotten to take off my glasses, so she removed them from my face, and I apologized that she had to touch the dirty things.  I hadn't properly washed them since Puerto Rico, and the saltwater splatters made them look rather gross, I'm sure.  After treatment, before she handed my glasses back to me, she cleaned them with a proper lens-cleaner towelette.  Then she again gave me her elbow to walk back to the waiting room.  This is above and beyond!  And I'd like to emphasize the power of touch--after a big hug from the spouse, followed by taking the nurse's arm to walk back to the treatment room, I certainly walked a little bit taller and felt a little bit more confident about what I was about to endure.

After radiation treatment I went up to get my blood drawn and have an appointment with Dr. Oncologist.  She presented me with all sorts of great results:  my bloodwork was perfect, my bone scan was all clear, and my PET scan was all clear!  Huzzah huzzah!  No cancer in my body below my brain.  Huzzah!  SO, we are on the correct course of action to control my single pesky tumor (whole-brain radiation) and we'll discuss other Lloyd-control measures after the whole-brain radiation is complete, which will be in 2 weeks--I have treatment every day for 10 business days.  1 day down, 9 to go!

How do I feel now?  Mostly fine.  I have a headache, and I'm tired, but the magnitude of these things is not that much different from yesterday, for example.  My cheeks are kinda hot so I wonder if a fever is coming but I don't feel feverish, and my eyes are very heavy, but let's acknowledge that this was an EPIC day where I had to be all three of my selves (mom-scientist-patient) for at least a few hours each, so it's hard to blame any of these symptoms exclusively on whole-brain radiation.  And yes the part where I was a patient was stressful and hard and seemed to last forever!

My simultaneous tiredness + the need to update my loved ones (you) inspired a new thing, which is blogging from bed.  Thanks to the family elves I now have extra pillows on my bed for proper propping, so I thought I'd give it a shot.  I will definitely not make a habit of this!  I think it would be better and more comfortable and more efficient to simply own the fact that I need to blog/type and then sit in a proper chair with a proper table or lapboard.  This blogging-in-bed thing confuses the two tasks of writing and resting.  And the slow, slipping slouch is a real problem!  I don't know how the laptop-in-bed people do it! 

Time to be done with the blogging and phase-switch into sleeping.  Goodnight!  Be well!  Oh, and it looks like technology is working so I'll leave you with a Puerto Rico picture.  Sigh.  Those were the days!  ;)

The Allens on Condado Beach in San Juan, Puerto Rico, Nov. 2018.

Fortune

August was a month of great fortunes.  The PET scan was once again all clear, with a minor exception of a possible blood clot in my neck.  A neck ultrasound revealed that it was nothing, and so I go on living as a NED person -- no evidence of disease.  The great fortune of being NED is sometimes overwhelming, but it's a burden I'll happily bear.

Additionally, I was invited to write a short essay for the magazine called Living Well.  I'm presuming that it's for an October breast cancer awareness issue or something.  They want to publish a small series of essays on the diversity of breast cancer:  one written by a doctor, and two written by patients.  They targeted one patient with early-stage disease and one patient with late-stage disease.  Remarkably, I am the patient with late-stage disease they invited to write a piece.

At first I felt that it was a bit disingenuous for me to write the late-stage disease piece because I am not living with late-stage disease.  I am living with a late-stage disease diagnosis, but not the typical manifestations of late-stage disease.  It turns out that that is what they were looking for:  someone who could put an atypical face on late-stage disease.  The person certainly could be me.

So, I wrote.  The first page of stuff was crap.  I had trouble knowing where to start.  Perhaps I'll turn it into a blog post, lol.  Then it started to get better as I wrote the easy stuff about the timeline of my journey.  Then I thought of a pretty sweet introduction, so I went back and rewrote the beginning.  Then I rambled as I discussed the second cancer, and it was just feeling like a whole lot of cancer treatment (maybe because it was a whole lot of cancer treatment, lol) so I cut some details.  Finally, I thought of a poignant ending and finished it up.  I solicited feedback from two of my writer friends, edited the piece, and sent it off tonight.  Woo hoo!

It was quite fun, really, and didn't take that much time once I let go of the pressure associated with writing a real-live article rather than a blog post.

Another cool thing I did this month was a tiny bit of activism.  I was invited to sit on a panel discussion of safe routes to school in my town.  I was invited because apparently I organized the first Walking School Bus in my town.  This sort of cracked me up because I didn't even know I was doing it.  I just wanted to walk my kids to school every day, and I figured that some neighbors might be interested, too.  So two years ago I started lightly coordinating about 4 neighboring families, and we all walk to school together.  Sometimes if a parent is sick or has an appointment, they just send their kids with the group, myself included.  We used to text each other at 7:30 am or so ("walking today?" or "running late!"), but now there is no question and everyone just shows up at the designated corner at the designated time.  We have anywhere from 1-4 adults with 2-12 kids, and we walk pretty much rain or shine.  In 1986 this would simply be walking to school, and it would be normal.  Today it's a Walking School Bus, and I'll go down in the history books as organizing our town's first.  Lol.

I also went to Montreal for a work conference where I heard about some amazing microbial ecology. I hadn't attended this conference since 2010, and it was scrumptious.  I have over 20 pages of typed notes (nerd salute!) and wish there had been two of me to catch the other great presentations I necessarily missed by being confined to one seminar at a time.  Also, this conference has one of the best conference dinners of all, with a DJ to spin some crazy beats and get the mad scientists dancing.  At 9pm the dance had yet to start, but my buddy A and I decided to change that.  That's right, with our labmates we opened the dance floor and got that party started.  A crowning achievement, to be sure.  

Winning the war

Yesterday was my last dose of FEC, as long as there are no more surprise revisions in my treatment plan.  I will have a major huzzah after I get through the FEC aftermath.

I have been fighting many battles over the last 24 hours.  FEC sucks, man.  The first battle I fought was that mysterious allergic reaction to one of the components of FEC (no one knows which one).  Dr. Oncologist's strategy was to prevent an allergic reaction by increasing my dose of steroid (dexamethasone) from 12 mgs to 20 mgs, and my dose of benadryl from 25 mgs to 50 mgs.  I should also say that I did my part by taking the anti-allergy drug Zyrtec prior to the appointment.  Despite these preventative measures, the allergic reaction started up again after receiving the F, the E, and 15 minutes of the C.  It felt like I had snorted black pepper.  The nurse stopped the dose of C, and Dr. O gave me another round of benadryl and 'roids, for a grand total of 100 mgs of benadryl and 40 mgs of steroid.  I asked her, is this legal?  She just laughed at me and said she could give me more if it came to it.  The peppery feeling completely went away after this, so we resumed the C.  Soon after resuming the treatment, the peppery feeling came back and got worse; it was the burning feeling you get when you get water up your nose.  The nurse stopped the C again and waited with me for a bit.  The good news is that the allergic reaction never got worse.  My throat never got sore, my skin never flushed, and, most importantly, my lungs never tightened.  After a few minutes Dr. O came back into the room, assessed where I was, and asked me what I wanted to do.  I said I wanted to finish the C!  As long as my lungs remain clear, bring it on!  I therefore received the full, final dose of C, with little more than a peppery feeling in my nose.  Boom.  Huzzah!

I was more of an innocent bystander in the second battle of my day and night.  This battle was between benadryl and dexamethasone (the steroid), fighting for control of me, aka Side-Effect Hill.  Benadryl quickly gained control of my eyelids, but dexamethasone had a stronghold on my heart.  The dex hunkered down, commandeering my heart to pound out the drumbeats of war, all night long.  Benadryl made numerous offensive strikes, claiming an hour or two of sleep at a time, but overall the strikes were unsuccessful against the entrenched dex.  I finally dragged myself out of bed at 9:30 am, only to go downstairs and take another dose of each drug (as ordered by Dr. O).  I only have to take the benadryl while I feel the peppery nose (yep, still peppery) to prevent the reaction from worsening, and I only have to take dexamethasone one more time tomorrow.  The Battle of Side-Effect Hill will likely continue for at least another night or two.  Damn side effects.  Damn peppery nose.  Good thing I have a comfy couch for epic resting.      

The battles are tough, but I am winning the war.  The FEC has done it's job:  the breast cancer seems to be completely gone.  The tiny lump that Dr. O and I can feel could simply be scar tissue from the biopsy, that's how small it is.  My previous drugs (TCH+P) reduced the cancer substantially, but the FEC has obliterated it.  The most noteworthy fact, in my opinion, is that I had one lymph node adjacent to the cancer that felt swollen throughout all of TCH+P treatments.  In contrast, I can no longer feel this lymph node after three rounds of FEC.  In summary, let it be known that I am grateful for the FEC and remain humbled by its cancer-fighting powers.  But good lord am I glad that the havoc it wreaks is almost over.

Finally, I have an appointment for a PET scan on Tuesday, July 8th.  This is three days before resuming three more rounds of the TH+P-C treatment.  I normally hate PET scans because I frequently have false positives (I know they are false positives because I've had to go through the explorative procedures to prove it).  This one, however, excites me because we will see that nothing is glowing in my lungs.  I never felt like I had lung cancer, and I definitely don't feel like I have it now.  Dr. O did not say anything about the results of this scan changing the course of my treatment.  I am not even allowing myself a glimmer of hope about that.  But I agree that it's a good time to assess what's going on in those lungs.  I am quite curious.  Quite.  Again I say, bring it on!  Huzzah!

I'll end with a public service announcement.  I wrote this post while listening to Ray LaMontagne's new album ("Supernova") on Spotify.  Wow, it's excellent.    

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.

No more "Pet scan tomorrow"s

Today couldn't have gone any better, really.  Not only was my PET scan perfectly clean, but also Dr. Oncologist said that I don't need any more PET scans.  I'll repeat that:  clean PET scan and no more PET scans.

Has the goodness of that news sunk in yet?  I don't think it has for me, either.

She said that I will remain under her watchful eye forever but particularly until November 2013, which will mark the two year anniversary of completing all of my treatments for inflammatory breast cancer.  Since the PET scans have been clean twice in a row and they require the injection of radioactive molecules (which as you know cause CANCER), we are going to cease the precautionary PET scans and only use them to confirm suspected new cancers.

But I won't have any recurrences or metastases, so I'm claiming that yesterday was my last PET scan ever.  Huzzah!!!

I will still see Dr. O every three months, and she will check my blood for tumor markers and other signs of cancer.  I will miss her, but like Mary Poppins, she swooped in and performed her job so that I can get back to my happy life.  Right now it is not a kite but me that she has sent soaring.  

   

Not used to it yet

I keep thinking that the next PET scan is going to be the one for which my heart neither skips nor pounds out its beats.  And it must always be the next PET scan, because I never have peace with the present PET scan.

I had a clean PET scan in May and felt jubilant.  I felt as though I had conquered the cancer issue at last.  I felt that with one clean PET scan under my belt, I would not suffer the same magnitude of nerves in the future.  Yet the mind is a tricky thing.  I find myself thinking that if we could be certain that the cancer was conquered, I would not be having this PET scan in the first place.  If there were nothing to be worried about, there would be nothing to be looking for.

I have been plagued by over-thinking my entire life.  (It causes me to perform poorly on muliple-choice tests, particularly in non-science fields where I find that most answers are shades of correct answers and it's impossible to choose only one.)  Now my over-thinking is causing pre-PET scan sleep deprivation and crabbiness.

It doesn't help that there was no yoga class this week.  Attending yoga once per week has been a great outlet for physical activity, maintaining range-of-motion in areas of scar tissue, and meditating.  I can accomplish the first two aspects of yoga at home, but have not yet been successful with home meditations.  Too much commotion, too many obligations, too much to think about.  This week I would have greatly benefited by a meditation session to relax and center myself.  On the bright side, I'll have a silent hour in near darkness tomorrow while the radioactive glucose incubates in my body, searching out cells with high metabolic activity.  Yes, that will be a good meditation time as long as I can keep my mind off of my purpose for being there.  Ha!

Sigh.  I am a healthy person, I just have to remember that.  Another year or so and I will have fewer scans, and in just a few years I won't have to be scanned at all.  I can go back to living in ignorance of the rascally thing my body might be up to.  Go back to being a healthy person living in bliss.      

I heart

a clean PET scan.

I'm walking on sunshine, and the accompanying music video is hilarious.

The glowing colon is gone, the glowing chest wall is gone, only the glowing lung remains and it is stable from the last several scans.  Huzzah huzzah, and again huzzah!

I hope you all have a glorious long weekend! 

50% complete

I am halfway through my week of scans, -grams, and exams.  I should be saying "huzzah", but I'm feeling a little crabby so I'll just say "yay".  I think I'm crabby despite the 50% mark because the most dreaded of the tasks awaits me tomorrow:  the PET scan.  

The mammogram was awesome yesterday.  The technician was talented and inflicted minimal discomfort, and the results could not have been better:  the abnormality first visualized in November has not changed, and so we continue to conclude that it's scar tissue from last April's biopsy.

"No new abnormalities" is worthy of celebration in my world.  To celebrate, I stopped at The Loft Outlet on my way home and bought some clothes for myself.  (Those of you who know me know that I do not enjoy shopping and rarely buy anything for myself, so this truly was a special event.)  Despite my repulsion from shopping, I need some new clothes.  I would like to build up my summer wardrobe with shirts that are more flattering for my asymmetry.  This includes shirts that are a bit loose-fitting with accents on the left breast area or big patterns in the fabric.  My old wardrobe includes very few items that fit this description.  To date, The Loft has been the best store to suit my needs.

Today was my first of two root scaling sessions.  It truly wasn't as bad as it sounds.  I would go so far as to say that it was scarcely unpleasant.  The hygienist squirted a little bit of numbing solution at the gum line before using an ultrasonicating tool (micro-vibrating tool) to scrape my teeth just below the gumline.  Then she went through with a normal tool to double-check her work and manually scrape any places the ultrasonicating tool missed.  Hmm, although it wasn't very uncomfortable at the time, the half of my mouth that was scaled is emanating a mild yet nagging dull pain.  Perhaps I should take some tylenol, thus relieving my crabbiness by eliminating the pain only acknowledged when analyzing myself for the purpose of typing this post.

Tylenol administered.  Thank you for that.    

In a month I'll return to the dentist to scale the other half of my mouth.  After everything is properly scaled, the protocol is to keep up my dental regimen and hope that the problem doesn't get any worse.  Oh yea, and of course I'm to go to the dentist every 6 months for a professional cleaning.

Ugh ugh ugh, PET scan tomorrow, ugh ugh ugh.  I am trying to be so tough and so brave, but the truth might be that I am marginally terrified.

  

Seeking nothing

This week is going to be a week in doctors' offices unlike any I've had since...early spring.  Tomorrow I'm off to Iowa City for a mammogram and surgical follow-up, Wednesday I'm off to the dentist for a root scaling (more on that in a bit), Thursday is my quarterly PET scan plus blood draw and port flush, and Friday is PET scan results day.  And I suppose if we're true to a 7-day week then I can include my toe follow-up appointment next Tuesday.  I am the least nervous I've ever been for these tests, possibly because I feel so fabulous.  How can I have cancer lurking in my liver when things are going so well?  How could a tumor be growing in my brain while I just co-wrote and submitted a sweet little review article?  How might my lungs be fostering cancerous nodes although I breathed so deeply as I biked to work last week?  These lines of evidence suggest that I am cancer free where it counts.  

I hope I can keep up this positive attitude up throughout the week.  The familiar butterflies in my tummy were just starting to fly away.    

What is this business of root scaling?  A few weeks ago I decided I had enough sick leave built up to tend to routine checkups, including my eyes and teeth.  The results showed that my eyes have not changed, but my teeth are another story.  They are still 100% cavity-free, pearlie-white, and strong, but my gums have receded a bit.  I noticed that they receded during chemotherapy, and I noticed that they did not "grow" back.  But the change was minor, caused me no problems, and ceased to get worse after chemo ended.  Well, my dental x-rays revealed that the problem is much greater than my phenotype suggests.  I have had significant bone loss due to bacterial biofilms that have formed beneath the gum line.  (Shout-out to bacterial biofilms and those of you researching them.  They are the coolest, but not when they are in my mouth.)  My outstanding dental hygiene regimen that has long included daily brushing, flossing, and mouth-washing was not sufficient to prevent these pesky bacteria from digging in in the relative absence of my immune system.  Boo.  

I was diagnosed with early periodontal disease, which can be stopped in its tracks via root scaling.  The hygienist will use a special sonicator tool to disrupt the bacterial biofilms that are thriving below my gumline.  It'll be relatively uncomfortable, and so local anesthetic will be offered.  I will have to go in for two sessions of root scaling, having half of my mouth scaled at a time.  Tomorrow will be the first of the two.  It will be a bummer, but not so bad.  I just harken myself back to the spine biopsy, or the post-mastectomy drainage tubes, or any day during chemotherapy, and I instantly realize that I can handle a couple of sessions of root scaling.  Boo-M.  

One reason I am in such a good mood is that I had a remarkable weekend.  I took the girls to the Twin Cities to see one of my dearest friends from grad school, my amazing college roommate, and one of my favorite former labmates.  We also visited the Minnesota Children's museum and Minnehaha falls.  Nothing like introducing your children to old friends to bridge the gap between life pre- and post-cancer.  Needless to say, it was a most enjoyable and therapeutic weekend.  

Come and get me, scans, -grams, and exams.  You will reveal no cancer in this girl.  

Get with the program, Toe

I met with Dr. Oncologist on Friday to discuss the results of the colonoscopy.  She too was delighted that there was nothing to biopsy.  My elation faded, however, when she answered my question, "what happens if my colon is still glowing on the next PET scan?"  She said that that is when things get more complicated.  Either we continue to watch it, or if the region has increased in metabolic activity there might be some exploratory gut surgery in order.  Ugh!  I don't actually believe that this will be the outcome, but one never knows, does she?  So we'll just hope that the glowing colon will go the way of the glowing spine, lungs, and chest wall and stop glowing in time for the next PET scan.

My next PET scan is at the end of May.

In the meantime, a body part from the peanut gallery has decided to participate in the post-cancer fun times. I have been having an issue with the big toe on my left foot.  I wasn't even going to mention it in the blog, because I thought it wasn't cancer related, but the podiatrist has mentioned certain possibilities that close the gap between my big toe and cancer.  Gulp.

One day before we left for Santa Fe, I noticed that my big toe was hurting around the nail bed.  I thought nothing, literally nothing, of it.  It's a toe.  Also, sometimes things hurt periodically and then they stop hurting.  Right?  Surely you all have experienced some random pain somewhere in your body, and you don't know what caused it, and when you wake up the next morning it is better if not resolved entirely.  This was me and my toe.

Well, in Santa Fe it got worse:  redder, angrier, more painful.  ("More painful" is not a comment on the pain level itself, just a comment on an increase in pain.  I was not limping or anything).  So I soaked it in epsom salts and smeared neosporin on it.  No resolution.  As a side note, it is not an ingrown toenail because 1) I have good toe hygiene! and 2) the reddness is around the nail plate at the base of the nail, not the sides of the nail.  Also, there was no injury or incident that I remember between me and my toe.

Darn it if the thing hasn't been getting worse.  The pain has stayed at the same low level, but it is now a little bit black-and-blue under the nail bed while being red and inflamed on the nearby skin.  I took my audience with Dr. Oncologist on Friday as an opportunity to get her medical opinion on this 2-week-long toe issue, and she in turn sent me to Dr. Podiatrist.

Dr. Podiatrist has an excellent bedside manner, a soft spot for microbiology, and a gift for explaining the possible causes of and outcomes for my problem.  In short, I am a fan.  (Why couldn't HE have gone into gastroenterology?)  Unfortunately, my toe doesn't fit any textbook phenotypes, so he couldn't make a conclusion without a biopsy.  We agreed that it is a bit too soon to rush into a biopsy.  So I am on a course of antibiotics in case it is an infection, and I am to watch it for changes.

And here's where the connection is made to cancer:  his concern is that it could be a melanoma (skin cancer) that just happened to develop under my nail bed.  It happens, albeit rarely.  So if it suddenly becomes irregularly shaped or continues to increase in size, a biopsy of my toe and toe nail is in order.  I forgot to ask if this would have showed up on my PET scan a month ago.  Are my feet even scanned?  I have no idea.  

Also, who on earth has to worry about melanomas under their big toe nail?  Apparently the girl who had inflammatory breast cancer.

My preferred hypothesis is that it is an infection.  Cancer is still to blame for this possibility, I think, due to a continued weakened immune system.  Please join me in cheering on the powerful antibiotic cephalexin (I used this antibiotic to make discoveries in graduate school!) and hoping is makes it all the way down to the toe peanut gallery.  

Why Heather, aren't you radiant today?

I've been wanting to do this after several PET scans now, but I was uncertain if I should put it on the blog or not since it requires a tool that I don't have at home.  I suppose now that you know what I decided, the only remaining question is, regarding what?

As I have explained previously, the purpose of a PET scan is to detect regions of increased metabolic activity in the body.  Increased activity is potentially indicative of cancer.  This activity is detected by injecting a hungry person with radioactive glucose (sugar).  The person then rests for an hour, and since the person hasn't eaten in awhile the sugar goes straight to the hungriest cells (cancer, if present).  The radioactivity concentrates there, and when the person is scanned after the hour of resting this concentrated radioactivity (if present) is mapped.

What I don't think I've discussed previously is, what happens to the radioactivity after the scan?  Well, it decays and goes away.  The type of radioactivity used in a PET scan has a very, very short half life, so short in fact that the clinic receives a shipment of radioactivity for the morning patients and a separate shipment for the afternoon patients.  Said another way, a shipment received in the morning is no longer radioactive enough to be used in the afternoon patients.

But there are several hours between "morning" and "afternoon".  Needless to say, I was curious about how radioactive (hot) I'd be just after a PET scan.

Lucky for me, we have a Geiger counter at my place of work.  A Geiger counter is a little box the size of a car battery with a microphone-like wand attached to it by a cord.  When turned on it works much like a metal detector, making rapid beeps when it detects radiation nearby and only occasional beeps in its absence.  My friend Sam was all too eager to use the Geiger counter on me, approximately 2.5 hours after the radioactivity was injected in my arm for the PET scan.  Fortunately Torey had his camera.  (Don't mind my ridiculous walking posture.  Apparently I don't walk normally when I know there's a camera on me.)  

Radiant indeed!  I suppose that for as much as I hate PET scans, they provide a nerd's delight.  Some amazing technologies are intertwined to make cancer detection happen, radioactivity and all.  Nerd salute to physics!   

The weekend after

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

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

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

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

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

We went out for dinner and we went dancing.

I slept in on Saturday.

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

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

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

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

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

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

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

Mind games

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

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

My preferred outcomes are ranked as follows:

1) No suspicious spots at all 

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

3) Suspicious spot that requires a biopsy

4) Suspicious spot and biopsy that indicate cancer

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

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

It's that time again

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

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

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

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

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

All clear

PET scan results:  CLEAR

Right breast = clear
Sternum = clear
T9 vertebral body = clear
Lungs = mostly clear.  7mm node gone, but a few other tiny infectious-looking particles.  Go, immune system, go!

And I will officially live to see my 31st birthday on Monday.  Thank you, Dr. Oncologist.

Coping with Crap 101

My place of work celebrates numerous observances, from black history month to gay and lesbian awareness month.  A few weeks ago, a scientist at work approached me and asked if I'd be willing to be the breast cancer awareness month speaker.  I hesitated only momentarily before agreeing to do it.  I thought it could be fun.  So I invited one of my nurses to co-present with me, and our presentation was yesterday.  Needless to say this is why I haven't had time to compose a blog post this week.

This marvelous poster was made by a talented artist at my place of work to advertise within my place of work.

Oh my goodness I felt like I was doing a live sketch of a Lifetime original movie, complete with moist, red eyes in the audience.  It was also a lecture in Coping with Crap 101.

In the days before the presentation I was really nervous.  My scientific colleagues can attest that I no longer get very nervous before a typical public speaking event.  This, however, was oh so different.

This presentation was so personal, and I didn't really know what details people would want to know about.  With science I can find a punchline, and people will learn what I want them to learn.  In presenting my journey through breast cancer, I didn't want to presume that I was the only one in the universe to have taken this journey, but I also wanted to educate the young people who might have no clue what goes on with cancer treatment.  Turns out that's a fine line to walk.

So, I tried to keep it a tad bit scientific.  This is of course what I know how to do.  My nurse presented first and laid the groundwork for the different types of cancers and what the details mean.  When it was my turn, I framed what I was going to tell them as a breast cancer case study in the context of what my nurse taught them.  I tried to step away from myself, otherwise I was sure to sob my way through it.

But sob I most certainly did NOT!  I even snuck in a few jokes, which was easy considering I chose to include such delightful cancer bonuses as the sinus UFO and my original displeasure with the port.  I did get choked up at times, mostly when I thought of my own mortality or everything my loved ones did for me throughout the ordeal, but I was able to power through.  Also, a new thing for me was to include "readings" in my presentation, and these were from my blog.  Wow was it handy to have this treasure trove of insights in real-time.  I chose five portions of posts that I thought were salient thoughts from a given time, and I read them aloud at relevant points in my presentation of slides.  (Thank you, Martha, for inviting me to read at your wedding so that I could gain some experience in the public reading department.)

When it was my turn to present, my nerves were totally silent.  That's standard for me.  My nerves just know that there's no turning back now, so why be that person with the jittery laser pointer?  May as well calm down and save some face.

Afterwards, however, the nerves spiced up again.  For many hours I couldn't figure this out, because after a presentation is over I should be overcome with relief.  But here's what I've figured out:  the presentation made me re-confront the gravity of my former disease.  On an ordinary day in my marvelous life, I spend exactly zero seconds thinking about 40% chance of blah blah blah in 2 years, only 40% median blahsey blah in 5 years.  But that dang presentation made me think about all of those horrible, horrible statistics, and to realize that year number one is already over (happy cancerversary to me, today in fact).  Needless to say it took me until bedtime last night, with some furious playing and crocheting in between, to get a grip on my heartbeat.

Speaking of my nervous heart, I have a PET scan tomorrow.  Yay if it comes out clean, boo if it doesn't.  I won't know the results right away, but I'll post them as soon as possible.  We are hoping:  T9 is still clean, that a certain 7mm node in my left lung has mysteriously disappeared, and that there is NOTHING NEW.  Geez I hate PET scans.        

Predicted victories

Perhaps all of the campers should evacuate Camp Allen, what with all of the wildfires springing from our camp.  Wildfires of gossip, that is.  Can't a girl take a nap before writing a blog post anymore?  :)

Indeed it is as Holly commented:  Dr. Oncologist is not concerned about the 7mm lung nodule, and her preferred course of action is to "watch it".  She said it is too small to biopsy, too dim to think it's cancer, and therefore too insignificant to worry about it yet.  Huzzah, huzzah!  Also, she was positively beaming with the news that the T9 vertebral body in my spine is no longer glowing; it doesn't matter why, and we'll never know anyway.  The morning took a slight downturn when she told me that if I have one more sinus infection she's going to send me to Dr. Ear Nose and Throat to drain my sinuses.  This involves spelunking in my sinuses and poking holes to make more drainage routes.  Ugh!  That sounds positively awful, and I'm not convinced that that's necessary.  Even if my sinuses were riddled with holes, couldn't an infection still set up shop up there?  The problem is my po-dunk immune system, right?  We shall see.

In the meantime, it's time for Operation:  Sinus Storm.  I am upping the antibiotic anti and switching to avelox (a fluoroquinolone) instead of augmentin.  I am taking claritin to dry out the sinuses and flushing them every night with a saline solution to.  After the eradication of the current sinus infection, I will adopt a daily prophylactic sinus wash regimen and wear a face mask the next time the kid(s) are sick.  My goal is to prevent the need for sinus surgery.  Oh, yea, and to reclaim my health at last.  I will be victorious!  

As alluded to, I already took one nap on this easy-chemo day.  That herceptin, I tell you what, I can hardly keep my eyes open on the walk home from the clinic.  I must have extra Her2 receptors on my brain because the herceptin seems to thicken and settle right in the center of my head.  Fortunately it will be largely cleared up by tomorrow and gone by Friday for sure.

I have been receiving herceptin every third Wednesday since March, but not once have I made it between herceptin appointments without having some other appointment or ailment.  I think June is my time to shine.  I'm feeling it.  I am going to work 40 hours next week, and I am not going to get sick before my next herceptin treatment.  I will be victorious!    

Fail

The results of PET scans are definitely pass/fail.  There's no middle ground for this sort of thing.  No room for B-pluses or C minuses.  You're either good (pass) or you've got something fishy going on that needs to be watched, biopsied, or removed (fail).  

Dr. Oncologist was out of the office today, so substitute Dr. Oncologist called to give me what he thought were the time-sensitive PET scan results.  Sub Dr. O called to tell me that I have a sinus infection.  I said thanks, I'm already treating that.  He said great and was about to hang up when I interjected, "How about my spine?  I'm really nervous about my spine."  He began to orally skim through the highlights of my PET scan results, starting with a normal-looking spine.  Just as I was letting out the largest sigh of relief these former tuba-playing lungs could hold, he mentioned a 7 mm node on one of my lungs.  "Tiny" and "bright" and "7 millimeters" are the only details I remember.  He said that it could be an infection related to my epic sinus infection, and that it's small regardless of what it is.  He said that my normal Dr. Oncologist will discuss it with me on Wednesday.

Logic tells me not to worry, because there is a very good chance that whatever it is is related to my sinus wars, or my recent surgeries, or my recent radiation therapy.  My goal is to have that worry under control by tomorrow, and this post is, as always, therapeutic.  This morning didn't I say something about Living, and happiness, and no need to worry?  Time to go re-enact some Ring Around the Rosy.

Fail.  

Living

This was supposed to post automatically at 7am this morning...sorry for the delay.

I have a PET scan at 9am this morning.  It is important because on my last PET scan three months ago, my T9 vertebral body (a bone in my spine) showed increased metabolic activity.  I had a biopsy taken from this bone, and although no cancer was found, they did find "atypical" cells.  This was good news because it wasn't cancer, but bad news because it wasn't nothing.  The conclusion from this exercise was to repeat the scan in 3 months.  That is today.

I suppose I am a bit worried about these results, but not as much as I could be.  You see, I have been doing so very much Living lately that I don't expect the results to wreck my life.  I think have learned how to live with the threat of continued cancer, or at least to ignore it.  There's nothing I can do about it, anyway.  And besides, Living is way more fun than worrying, especially when done on your husband's amazing patio...

And when playing with remarkable children...

And let's not forget the joy that is camping...

Sometimes the best part of Living is simply Ring Around the Rosy.

No more zaps!

I suppose I've kept you waiting long enough regarding the question, am I done with radiation?  The short answer is YES, and the reason for my delinquency is that I've been doing so very much LIVING that I haven't taken the time to post.  Yes, posting is not about having the time, but taking the time.

I was a bundle of nerves when I saw Dr. Radiation Oncologist on Tuesday, fully expecting him to scoff at my pinkness and sentence me to another week of radiation in order to achieve the ambiguous yet desired redness.  (My chest wall has survived remarkably well and looks like it has been to Puerto Vallarta rather than to Radiation Oncology...I wish).  Instead, he said, "you're done".  In my confusion I found myself nearly arguing for more radiation, saying things like, "but my skin was never very red!"  It turns out that my misconception laid in the purpose of the bonus radiation:  I thought that the bonus radiation doses were to stimulate redness, but the bonus radiation doses were merely a radiation boost regardless of redness.  Yes, redness was the goal for the original three weeks, and when that wasn't achieved the boosts were prescribed with no more redness in mind.  Said another way, the redness was his barometer for how effective the original radiation therapy was, and when the redness didn't cross his threshold, he prescribed the 2 days of boosts to ensure the efficacy of the radiation course, regardless of redness.  Confusing, I know, but hopefully this makes sense and anyway, I'm DONE!

Herceptin chemo yesterday was delightfully uneventful.  The biggest thing is that we scheduled my next PET scan for June 6th, and Dr. Oncologist will report the results to me on my June 8th herceptin day.  The purpose of this PET scan is to look for metastatic cancer.  The inflammatory breast cancer is super duper ultra gone, but my T9 vertebral body was suspicious on my last PET scan in March.  Pesky spine bone that doesn't hurt or anything!  The biopsy of said bone was inconclusive, revealing atypical cells but nothing specifically cancer or not cancer (read some of those early March posts if you want a more in-depth review).  So, PET scan in June.  I'm choosing not to worry about it but rather go on riding the happiness wave.  Nothing I can do about it anyway.  

Frank, your celebratory song suggestions were more than excellent, and I am grateful.  I chose, however, to take it as a challenge to come up with an even better one.  I submit to you and your fellow Carnations followers:

It's Oh So Quiet, by Bjork.  Not surprising, since we all know by now that I tend to go for the jazzy instrumentals.  And another selection (Tchakovsky's Chinese Dance, from The Nutcracker) that sounds like spring despite its perpetual winter holiday employment and includes a rather goofy dance (this one's for you, Hol):