Bodily chaos

Progress is non-linear.  Every day is different; some days I feel pretty good, whereas other days I feel quite lousy.  I have learned that extra-strength Tylenol is quite helpful to take the edge off of "lousy", but the label says not to take it for more than 10 days and I'm swiftly approaching that deadline. 

My bone scan was all clear!  Huzzah!  The radiologist even compared it to my most recent PET scan (May 2018) and confirmed that they both looked great, with no signs of cancer.  Huzzah huzzah! 

BUT Dr. Oncologist doesn't like my fevers.  Dr. Google had suggested to me that fevers are a possible side effect of the steroid step-down, but Dr. Oncologist disagrees.  So at my appointment on Friday, which wasn't until 4:30, I had my blood drawn from two locations (arm and port) to rule out a blood infection, I had to pee in a cup to rule out a UTI, and I had a chest x-ray to see if I have a lung infection.  I am very grateful to the clinic employees who work hard for patients at 6:00 on a Friday even though all of their co-workers left well before them.  For example, the radiology department was completely closed, but the folks up in the oncology department thought that they were to be open until 7:00 pm.  Rather than go home without the x-ray, I happened to catch the last technician on her way out and she kindly agreed to administer my x-ray.  She turned on a computer, turned on the x-ray machine, and took my x-rays.  She was delightful!  Like me she has two daughters, and my daughters' middle names are also part of her daughters' names.  AND her wedding anniversary is my birthday.  It seemed so crazy to discover so much in common!!

I don't have any data yet on the outcomes of these tests, but I have an appointment at 9:00 on Monday to get the results.  Right now, my fever of unknown origin is more or less managed by extra-strength Tylenol so I'm not terribly concerned.  I figure if I had a blood infection, someone would have called me by now, lol. 

The sore spot on my chest that led us to the bone scan recently erupted into a rash, so perhaps that was what was causing the pain.  I have some ointments to calm the rash. 

The fevers have been majorly interfering with my exercise routine.  I have completely fallen off of the exercise wagon, for the first time since this whole ordeal started in January!  But I'm getting back on the wagon as soon as I finish this post.  The fever hasn't yet started today. 

My dear friend, R (not to be confused with M, lol), visited over the 4th of July holiday, and we had a lovely time.  She was lucky enough to be here for my daughters' Taekwando testing for their next level belt, and my oldest's next level will be first-degree black belt and my youngest's will be red belt.  We played games on the July 4th holiday, and the spouse made a fancy hot dog bar inside because it was too rainy to grill out.  We both wish we could see each other more often!  I think that we need to plan a road trip to Boston for next summer.  :) 

Independence Day came a day early this year

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

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

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

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

image source

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

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

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

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

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

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

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

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

FFFFFFFFFFRRRRRRRRRRRRRREEEEEEEEEEEEEDDDDDDOOOOOOOOOOMMMMMM!!!!

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

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

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

An unlikely nurse

Alternate title:  How I became the grumpiest I've ever been

Alternate alternate title:  I'm in the hospital but I'm totally fine

On Friday I received the news that I was neutropenic and needed to stay away from all potential sources of infection.  I had all sorts of seemingly crazy instructions, such as to throw out fresh flowers and to wash bananas before peeling them.  It was no problem to enact these instructions, and I was ready to hunker down at home and grow some neutrophils.

I was still pretty weak, tired, and nauseous on Friday, so my mother-in-law (MIL) decided to have the girls over for a sleepover.  They love sleepovers at grandma’s house and were thrilled by this development.  Ian got to have the night off, and I went to bed early as usual.    

In the morning, our weekend was diverted to the path that I am still on.  At 8 am we received a text from the MIL that Eleanor had been up puking all night long.  My kids have been disease-free for weeks, and of course it is my neutropenic weekend that they decide to be infested.  The question was, then, do the kids stay at grandma’s or come home? 

In hindsight there is only one answer to this question (a vehement “stay at grandma’s”), but at the time we weren’t sure what to do.  Regarding Eleanor, we felt that the poor little dear would have been more comfortable in her own bed, and we felt we would have been putting out the MIL for her to keep dealing with the pukey situation.  Regarding myself, I called the oncology clinic twice and spoke with two different nurses, both of whom said it would be fine to bring Eleanor home as long as I didn’t touch her or any of her dishes (saliva-contaminated items). 

Both girls came home.  I donned a mask and relinquished my recliner.  I set up a sufficiently comfortable new post for myself in our desk chair at the dining room table.  I also moved my sleeping quarters to the guest room.  I stayed away from Eleanor; Ian would have to deal with the sick child by himself.   

On Saturday night Azalea started her own puke festival.  Ian was up all night helping her.  It was difficult to quench my mom instincts and not help any of my ailing family members.  The door to the guest room remained tightly sealed.

Ian woke up feeling ill, so on Sunday morning I called for back-up.  For an hour or two, I was the only nurse available for my family.  I wore my mask, some latex gloves, and stayed out of the living room.  I delivered all beverages in clean dishes, and bussed dirty dishes on a clean platter (i.e. I did not touch dirty dishes).  Before long Aunt J came to our rescue and did EVERYTHING:  washed pukey laundry, decontaminated doorknobs, delivered sips of juice, and read books to sleepy kids.  It was a sunny day so I spent most of it on our porch, confident that I was avoiding the infestation.  She stayed well into the evening, and planned to return early the next morning.

On Monday morning she accompanied me to my appointments.  I had a heart echo to check on how my heart is holding up to chemotherapy (result:  my heart is holding up perfectly!) and an oncology appointment to check on my white blood cells.  My counts had not increased one bit over the weekend, and I complained about continuing to feel nauseous and crappy.  I steeled myself for another few days stuck at home.  Aunt J continued her labors taking care of my family and household. 

Disaster struck on Monday night.  I puked.  Although I was still feeling chemo-nauseous, I have a strong constitution and was therefore suspicious that this was the beginning of neutropenic-Heather-gets-the-stomach-virus.  Oooo did this make me grumpy!  We took my temperature.  It was 99.8.  My instructions have always been to go to the ER if it gets above 100.5.  We called the nurse.  She said I was still fine at home, but to call back if my fever got worse.  I eagerly crawled into bed before we could take further temperature readings. 

On Tuesday morning my fever was still under 100.5, and I had not puked further.  I was weaker than weak, more nauseous than nauseous, and the stomach virus had found its way to the other end of my digestive system.  Grumpy!  I managed to keep down the fluids, and I largely slept through the discomfort. 

After my afternoon nap, my family was getting concerned.  I still had a fever (albeit under 100.5) and they were concerned about my hydration levels.  I once again called the nurse.  She asked me how I thought I was doing.  I told her that I thought I was on top of the situation, but my family had urged me to call and make sure she agreed.  She said she’d relay my goings-on to Dr. Oncologist and call me back.

I had barely set the phone down when it was already ringing with her call.  Dr. O said to go to the ER and get myself admitted. 

Grumpy!

It took almost four hours to get from the ER to a room in oncology.  By now it was 9pm, which is my chemo-recovery bedtime.  I was so tired on top of all of this other junk, but I had another two hours of questions and blood pressures before I was left alone to rest.  Plus, they wouldn’t let me take my usual pills (which I had brought from home), so I had to recite my meds, make sure they got it right, and wait wait wait for it all to be delivered from the pharmacy department.  Grumpy! 

I maybe got one hour of sleep that night.  If you’ve ever stayed in a hospital you know that they wake you up every couple of hours to make sure you’re alive.  It’s the strangest thing given that sleep is the best medicine.  Plus, my neighbor’s thingy beeped for literally 2 hours before anyone turned it off.  I was later told that there was a temporary malfunction in our nurse-calling buttons, and that is why no one came to turn it off.  Grumpy!  

Dr. O came to my bedside on Wednesday morning.  My counts were still low, my fever was still low, I was still taking prophylactic antibiotics (IV rather than pill, since I’m here), and I was not clinically dehydrated.  She ordered a test to make sure that I didn’t have a Clostridium difficile infection.  If this test came out negative I would be able to take some anti-diarrheal medicines and start to feel better.  The results were to be in at 11 am.

11 am came and went.  No one came to give me results.  I’m a patient patient, but by 1 pm I thought it was time to page a nurse and request the results.  Turns out I had been passed off to a different nurse.  The new nurse came in, and when I asked her about my C. dif result she casually said, “Oh, I think it came back positive.”

I think I said, “WHAT?!?!”, but what I might have said was, “What the f---?” or “How long have you known this?” or “Why did no one come tell me sooner?”

Then she logged into the computer and saw that my C. dif result was in fact negative.

GRUMPY!!!  This feeling masked what should have been a huge huzzah for the good result.  

Ooo was I crabby.  This place was throwing my off my game!  They were messing with my schedule, my sleep, and my mind.  I wanted to go home where I am professional nausea-and-diarrhea recover-er. 

I almost forgot about the final grumpy factor.  I have very weak 4G and wireless signal from my hospital bed.  I’m dropping calls, failing texts, and Facebook and blogging are out of the question (I’m typing this in a word processor and am going to have Ian upload it from home if I can’t get a moment of signal here).  Fortunately I need sleep, not entertainment, so I’m not terribly bored or anything.

Then my MIL brought the girls in to visit me.  That helped me to feel better.  My room is on the top floor of a brand-new wing, and there is a rooftop garden on this level.  We played on the playground in the sunshine.  I assured them that I’m getting better and I’ll be home soon. 

I made it through another night here last night, this time with slightly more sleep.  I saw Dr. O in the morning, and I’m doing great on all fronts except for one:  my neutrophils.  My total white blood cells have increased, and by that alone I am no longer defined as neutropenic.  However, my absolute neutrophil counts are still a bit low (in the 400’s).  Dr. O wants them to be above 1000 before she sends me home, probably because of the recent stomach virus infestation.  What I’m trying to say is that I don’t think that these values would have landed me in the hospital (indeed a nurse just expressed her surprise that I’m still here), but since I’m already here this is the threshold I must cross to be released.  I have no idea how long it will take me generate these neutrophils; there is no medicine for it.  (Well, there is (neulasta), but I’ve already received my dose—the neutrophils I have are probably due to its action!)  In a somewhat panicky voice I asked her if I will still be here next week, and she confidently said no no no. 

So…I need a goal…something to target…how about Saturday?  Let’s shoot for 1000 neutrophils by Saturday.  Clearly my preference is for tomorrow, but in the absence of any knowledge on the subject it seems like a herculean task to double my neutrophils in 24 hours.  Saturday it is! 

For those of you supporters out there who like to have details for prayers, meditations, or whatever, my neutrophils are counted from blood taken between 3:30 and 4:30 every morning.  (I told you there is no sleeping around here.)  Again, they need to be over 1000.

I’m in high spirits, guys, I really am.  We made some bad choices, I had a bad day, and now I’m fine again.  We’ve got a new family protocol to prevent this from happening again (people who are sick elsewhere do not enter the home, even if they are my offspring; or I retreat to my MIL’s house if people start their sickness in my home—note that we discarded this idea last time because in our mind her house was also contaminated).  I’m trying to translate my personal recovery patterns and habits to the hospital setting, and I’m starting to figure it out.  I’ve still got this.  I’ll be home before we know it.                       

Okay okay, I made the toe appointment

This was possibly the most difficult appointment I've ever made, but I finally made an appointment with a dermatologist to get my toe looked at.  I know this is all part of my master plan of being proactive and taking care of myself while Dr. Oncologist is absent this month, but it was hard to enact.  It is not fear that made this difficult, but normalcy.  Uninterrupted, springtime normalcy.  I have had a two-week break from appointments, and it is hard interrupt that stretch with a problem that is painless and often hidden from view.  A problem that a person with no history of inflammatory breast cancer would ignore for months.  A problem that almost certainly will turn out to be a common bruise.  But it is also slightly inflamed, and it has been persisting for over one month, so it is time for yet another professional opinion.

My toe appointment is for next Wednesday (just over a week from now).  I can't help but feel a little bit ridiculous compared to some of the other pains and scares that have sent me to a medical professional.  But here we are.  It's my year of extreme caution.

I also have an eye check-up this week.  Talk about normalcy!  I haven't had my eyes checked since I moved here three years ago.  I used all of my time off on pregnancy appointments, then maternity leave, then taking long lunches to breastfeed the baby, then cancer appointments, then cancer appointments, and still cancer appointments.  My time off is still precious, but my nighttime reading habit has not been kind to my glasses and they are looking mighty crooked these days.  Time to get my eyes checked and buy some new frames.  It's exciting to have a normal doctor's appointment, but not really since I could use a break from having any doctor's appointments at all.        

Also normal is that it was yet another great family weekend.  We took the girls to the Shriner's Circus.  I hadn't been to the circus in ages, and it was pretty fun.  I appreciate the athleticism of the aerialists more than I did when I was a kid (woa those folks are strong!), but I appreciate the tamed wild animals less (poor tigers!).  Azalea absolutely loved all of it, but Eleanor is still a bit little for this sort of thing.  She covered her ears every time the audience applauded, and after every act she asked if it was over.  We compromised their opposing wishes by staying only until intermission.

Other big news is that we bought a bike for Azalea!  It is purple with training wheels and she is the happiest kid in town!  I think I smell a new series for Simply Bike this summer on learning to ride a bike.  I will begin taking photos in preparation.

Have a great week, everyone!
 

Toe watch 2012

To recap:  the skin around my left big toenail is slightly reddish and inflamed, and there is some discoloration akin to bruising under the nail.  The podiatrist had no answers but warned about melanomas that start under the toe nail.  The oncologist prescribed a course of antibiotics.  Tomorrow is the last day of oral antibiotics; have they resolved my mysterious toe issue?   

I am having trouble deciding if it's getting better, so the good news is that it is certainly not getting worse.  The reason it is hard to assess improvement is because visually it looks the same.  Everything is still discolored, at approximately equal magnitude.  Also, it is still tender to the touch but otherwise painless.  In short, the original phenotype was so weak and the resolution is so slow that I am struggling to evaluate improvements.

But I emphasize that it is not getting worse.  Huzzah!  I'll take it!

My plan is to give it 2 weeks to get significantly better, if not clear completely.  Then I will go see a dermatologist.  I have made this decision because the podiatrist used the word "melanoma", which puts my possible condition into the realm of a skin doctor.  I will not wait any longer, though, because I recently learned that Bob Marley died of toe cancer.  Well, his cancer started as a toe melanoma before metastasizing to his lungs and brain.  Another important detail is that he chose not to treat his toe cancer.  I assure you that I will choose to treat my toe cancer if I do end up having toe cancer, but the story of Bob Marley's demise has inspired me not to sit (or stand) on my toe problem.  Thanks, Torey.

In other health news, can I just mention how wonderful it is to have hair?  I still hate my haircut and pine for locks long enough to pull out of my face, but I am so glad to not be bald anymore.

Today I drove home from work with the windows down because it is unseasonably warm in the midwest.  The wind was whipping through the car, from driver's side to passenger's side, and taking my hair with it.  I wasn't worried about messing up my hair because I lack so much confidence in my hairdo to begin with.  Besides, I don't recall ever being the type of girl who would worry about her hairdo.  So I simply enjoyed the feeling on my follicles as I executed my daily commute.  

Also, on Monday night I went on a 4-mile walk around a nearby pond.  This was the most exercise I had gotten in weeks and it felt great.  The best part was that I think I could feel my left lung be less constricted.  Perhaps I wasn't working as hard as when I bike, but I didn't experience the shortness of breath that I usually do as a result of the chest wall radiation.

Let's perk this post up with a song!  College friends, I'm sorry I didn't like Ben Folds when you first introduced me to him.  I was naive and foolish.  Please give me another chance, and here's a token of my appreciation:  "Zak and Sara" with an orchestra!!!!  Ian found this on YouTube the other day and I'm momentarily addicted to all of the songs from this set.  But especially this one.

Freaky itchy rash

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

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

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

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

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

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

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

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

Cancer treatment didn't kill me

This will be brief because I am so, so tired.  No better way to keep myself brief than a numbered list.

1.  Sinuses.  Dr. Oncologist was on the same fence that I was on in yesterday's post about my inconclusive symptoms, so she sent me to Dr. Ear Nose and Throat.  His opinion was that my sinuses are not acute enough for surgery and we haven't tried everything in his non-surgical arsenal.  The antibiotics will be ceased and I am to shoot some steroids (Nasonex) up my nose every day, in addition to maintaining the sinus washes.  The goal of the 'roids is to open things up and let the sinuses drain on their own.  I predict another sinus UFO in my future.  I am very happy about this outcome.  I did not want surgery.  

2.  Heart.  I had an echo (ultrasound) of my heart today, and I suppose you could call it routine.  Dr. Oncologist wanted to check on my heart after chemotherapy, but she had to wait for all of my surgical and radiological wounds to heal.  My heart is in excellent condition.  This is outstanding news.  This in addition to all of the other ways I'm healing causes me to tentatively conclude that cancer treatment did not kill me.  This may not be news to you, but I am glad to finally have enough evidence to believe it for myself.  

3.  Lung (left).  What I don't think I have told you yet is that I am experiencing some shortness of breath in my left lung.  I biked to work last Friday and got a little unnerved when I couldn't catch my breath upon arrival.  Also, I run out of air even when I talk too much (as I did on Monday when training a new person in the lab).  Dr. Radiological Oncologist warned me that this decreased lung capacity may occur between 1 and 4 months after radiation.   This is because a sliver of my lung was in the radiation field and could not be avoided.  He said that this lung tightness usually resolves itself with time (although I am unclear if this is because the rest of my lung compensates or if the wounded lung heals).  Regardless, in light of my ongoing sinus woes Dr. Oncologist wanted a chest x-ray to rule out a lung infection.  I do not have these results yet.  Again, the left lung tightness is to be expected, and there is probably nothing more wrong with me.  Maybe I should sharpen my former tuba-playing skillz and exercise the lung with some John Philip Sousa.  

(Stars and Stripes Forever, performed by NY philharmonic.  Happy Independence Day, everyone!)

4.  In summary, it was a very busy day.  I was at the clinic for 6 hours and went from Echo to blood draw to Dr. O to chemotherapy to Dr. ENT to chest x-ray.  Whew.  No wonder I'm exhausted.  

5.  Now I am looking ahead to my first vacation since cancer started!  Woo-hoo!  This weekend I am driving the girls to scenic Columbia, MO, to visit my dear friend Martha and her triplets.  Should be epic in terms of cuteness and messiness.  Ian will not be joining us because I surprised him with a plane ticket to Seattle to visit my larger-than-life brother.  Tee-hee!  He deserves a vacation even more than I do.  Safe travels and safe celebrating to all of you!             

40 hours

I did it.  I worked my first 40-(plus!) hour week last week (see the above screenshot of my timesheet...yes, I have to fill out a timesheet <sigh>).  I didn't have any appointments or therapies, and no new problems arose that compelled me to call one of my many doctors.  And so I did it.  My greatest accomplishment?  Getting a draft, albeit extremely rough, of a manuscript to my boss and co-authors at 4:30 on Friday.  This manuscript needs to get done before I can do two others that are in my queue, and some of my collaborators are following this blog.  Therefore I'd appreciate it, cancer and associated ailments, if you'd get out of my way.  Thankyouverymuch.  

Indeed, apparently I've been working TOO much.  The timekeeper person in DC called me and asked if I wanted to give back all of the sick leave hours that people donated to me and I haven't yet used.  I said I still have chemo every third Wed. and am concerned that I won't have enough leave on my own to cover that through October, and also I might be needing sinus surgery soon.  She said oh, you'll have to fill out another application for people to donate sick leave, because the other sick leave is for CANCER and not sinus surgery.  I sputtered but, um, yea, I wouldn't have the sinus issues if I never had CANCER.  It's all RELATED.  She said she'd have to talk to her supervisor, and I'm to call her on Thursday, presumably after I know more about the possibility of sinus surgery.  I was cursing my big mouth.  It never crossed my mind that anyone would not relate said sinus surgery to cancer.  I should have said that the sinus INFECTION was caused by cancer treatment.  But I just jumped straight to surgery, because that is all that matters to ME.

This brings us to the topic of sinus surgery.  Here's where I'm at:  tonight I took the last antibiotic of a 3-week course, and this was nearly in tandem with the previous 3-week course of a different antibiotic.  I've been shooting yet another antibiotic up my sinuses for over a week now, again for the second time.  I was taking Claritin for weeks to dry things up, but I quit on Sunday because I hate it so much and things seem to have been dry for quite some time.  Now on to the symptoms:  I have always been able to breath through my nose and have never been congested in spite of four sinus infections since December.  (Perhaps mine could be dubbed Rubber Sinuses?  I smell [pun intended] a new superpower for the next X-men movie!)  I have had some drainage, but I currently have no drainage, and only once did a glob of green goo drain out of one side with a sinus wash.  I have had some sinus pressure, but I currently have no pressure (interestingly, the sinus pressure presented only WITH the Claritin and went away when I quit taking the Claritin).  I have also had some dizziness and upper tooth pain, both of which can be associated with a sinus infection, and those are both resolved.  I do, however, have dimmed hearing in my right ear, and my voice is "nasally".  I am therefore somewhere between healthy sinuses and a sinus infection.  

Any predictions?  When I see Dr. Oncologist tomorrow for Herceptin chemotherapy, will she recommend sinus surgery or not?  Will she first call for a CT scan?  Your guess is as good as mine.  Interestingly, I am no longer vehemently against sinus surgery if it improves the prognosis against future sinus infections.  I am sooooo tired of being on so many drugs, specifically antibiotics.  My microbiota needs a chance to recover (and it will recover to a stable and slightly different community, according to Les Dethlefsen and David Relman's data on the effect of ciprofloxacin on the human gut microbiota).

I'll end with a random shout-out to my awesome sister, Holly.  We love you and your Precious little dog, too!

Fluffy

Don't tell Dr. Oncologist, but this sinus infection is not going away.  I am halfway through a three-week course of a new antibiotic.  I have been diligent about washing my sinuses every night.  And on Friday, I resumed taking generic Claritin D, to dry things out.  But my sinuses are slowly building in pressure where they should be dissipating, and draining where they should be drying.  Drat.  Bilateral drat.  

Oooo I hate taking Claritin D, generic or not.  When combined with the antibiotic and antifungal drugs that I am also taking to combat said sinus infection, it makes my head fluffy.  This is probably the result of the drug cocktail created in my system, because each discrete pill claims that it could cause drowsiness.  Overall I wouldn't describe my primary side-effect as drowsy, but that is certainly playing a role.  I would define a new side-effect called fluffiness.  They should put that on the bottle:  "may cause fluffiness of the mind".   I can initiate thoughts, but I have trouble finishing them.  My attention span is a fraction of what it should be.  The worst part is that I'm sufficiently coherent to recognize this failure to close my own gaps in my own thoughts, and it is exceedingly frustrating.  I am channeling patience from elsewhere, as mine is wearing thin.  

After this is over I think I'll burn my pill box, with my bras.  Except for my nice bras.  Someone really should adopt them.   

Speaking of fluffy things and adopting things, our neighbor offered us a kitten.  A white kitten.  It is probably very cute and fluffy.  This is the closest we have come to getting a cat, but I think we're going to remain pet-free for awhile longer.  Cats are a practical pet in terms of their independence, but the whole pooping-in-the-house thing doesn't do much for Ian or me.  The plan is to hold out and get a dog in a few years.  We shall see.  I do enjoy a good cat cuddle once in awhile.  

You know what else is fluffy?  A certain pillow on a certain bed, just upstairs from where I am right now.  I think I should go check it out.  

I really ought to quit doing blog posts so late in my day.  I'm sure the multifaceted drowsiness is affecting the quality.                       

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!    

My other degree is in Cancer

I'm really sorry I didn't post yesterday.  I had to work late last night.  Thank you, Hilary, for posting in the comments section the results of last Friday's skin biopsy:  eczema.  Yet another weird thing that has popped up in conjunction with my cancer treatment, but at least it's totally manageable.  I've never had eczema before, and the dermatologist said it usually occurs in the winter or with a change in detergent, for example.  I haven't changed anything and clearly it's not winter, so naturally I suspect something related to the April 4th needle-localized biopsy in that area.  Perhaps the surgical glue?  Who knows.  I got a prescription for an ointment that should calm things down.  It's a rare day that eczema is good news, but I'll take it.

When it rains, it pours, because I have another sinus infection.  No joke.  The kids had some piddly virus last week, and I of course caught it this past weekend.  It started with a sore throat, so I did a salt-water gargle Monday night to nip it in the bud.  And it was nipped!  The sore throat was gone the next day.  But things never 100% cleared up.  Gradually over the course of the week I've felt my sinuses get a bit stuffy.  That was no big deal, but when my teeth hurt upon bending over to lift someone out of the stroller tonight, my heart sank.  Achy upper teeth is the hallmark of a sinus infection.  Here's where I gave myself an honorary degree in Cancer:  I prepared and performed a sinus wash; I took one free-sample antibiotic that Dr. Ear Nose and Throat gave me last month and told me to keep; I took a claritin D; and I took an anti-fungal (prophylactically).  Boo-ya!  I'll call Dr. Oncologist in the morning to get a full course of antibiotics, and hopefully she'll give me a bye on a head CT scan.  I am indeed a professional patient.    

Did I tell you that I asked Dr. Oncologist about why I get sick every time I even look at my kids (aka I complained)?  I asked her how long it will take for my immune system to start performing as well as it used to.  I feel so much better and my hair has gotten so thick that it just seems like my immune system should be doing well, too.  Not so.  Her response:  TWO YEARS.  Yep.  And I'm only 3 months out from my last hard chemo.  I'm going to have to start a sinus infection tally (I think I'm on number 4, if not 5).

The worst part about this sinus infection is that it's physically dragging me down.  I can feel the fatigue quietly drifting in, like a fog creeping over Lake Wingra and enveloping unsuspecting picnicers.  I was doing so, so good for an entire week, and now here we go again.  I might not be able to protect my energy, but I won't let the fog get a hold of my spirit!

Speaking of preserving energy...time for bed.

Updated poke tally (I had a blood draw on Wednesday to check for tumor markers.  I'll get the results on chemo day (next Wednesday)):

port  32

right arm 12

tummy  6

left arm  6

right breast 2++

left breast  1+

superior vena cava 1

T9 vertebral body 

Crawling

I definitely crawled over the radiation finish line today.  The lovely radiation technicians made me a certificate, and a hospital volunteer offered to buy me a root beer, but I don't feel celebratory at all.  Maybe it hasn't sunk in yet, and maybe tomorrow I'll be excited about it when I don't have to start my day with some zaps.  But I just feel so crummy.  Believe me, I'll celebrate at some point, in true hbomb style.  It's just that this girl typing on her cancer blog does not feel like the hbomb.

The brief report is that my chest wall is like the worst sunburn ever, and it'll actually peak in awfulness one week from today.  When I touch it, I get nauseous.  My throat hurts, mostly from the radiation but I have a new bonus throat pain from a change in the sinus infection.  This bonus pain shoots up into my ears.  That makes me nauseous, too.  My sinuses are improving but are still a bit plugged up, and the drainage is gross.  Finally, I'm tired.  So tired.  I took a 4-hour nap today.

That's enough of that.

I have two bright sides to share with you.  First, I have discovered the delights that are homemade smoothies.  I just use fruit, a tiny bit of sorbet, and water.  I'm keeping it simple because I'm trying to use them to stay hydrated, since drinking water is so painful.  My favorite so far is 1 c. water, 3/4 c. frozen blueberries, and 1/4 c. mango sorbet.  I can always add yogurt or powdered milk if I need more calories, but right now hydration is my biggest challenge.

Bright side number two is my awesome family.  Apparently I sounded pitiful in my last blog post because my sister, dad, and step-mom all converged on my house last night to help out.  It was fantastic to have all of that in-person support.  Unfortunately, I had no idea what they could do for me.  I just needed to take my meds, wash my sinuses, and sleep.  But I suppose that them being here to lift my spirits was the best help of all.

Time to get back to the resting.      

Mind over matter

   

I only have 5 doses of radiation left.  Why do I feel so defeated?  Answers: 1) real, chemo-esque fatigue has set in; 2) I am entering week 3 of a sinus infection and I'm grumpy about it; 3) my throat is burned, making it painful to swallow and therefore difficult to stay nourished and hydrated.

Hmmm.  Justifying my depression doesn't make me feel any better.  To feel better, I am going to employ my tried and true methods of Indulging Myself and Mind over Matter.

1)  Indulge the fatigue.  It has gotten quite severe and can no longer be denied.  I don't know why it has gotten so bad; perhaps my low white counts are a contributing factor?  Below is a graph of my white counts that I snagged  from my electronic medical chart.  You can see that as of Wednesday (4/27) they have dippped down again, ending their brief upward trend.  The blue dashed lines show the normal range for white blood cell counts.

I went to work yesterday and tried to think, revealing my lacking cognitive abilities and exacerbating the fatigue.  Sigh.  Today I am resting, with the exception of this post and the two short walks to radiation.  I am going to lay on the couch or in bed, do some puzzles with the ladies, and read a delicious book.  I can't wait for all of this to be over so I can get back to my exciting science!

2)  The sinus infection is no doubt contributing to the fatigue, but mostly it is responsible for my grumpiness.  The endless drainage is getting old.  Yesterday I saw Dr. Ear Nose and Throat, who stuck a loooooong periscope followed by a loooooong Q-tip up my nose and took some samples.  These samples will be cultured for bacteria and fungi, and I will be given the appropriate antibiotic based on who has wrongfully colonized my sinuses.  In the meantime, he gave me a sinus wash that contains the antibiotic gentamycin.  I am to squirt 90 milliliters of this antibiotic solution up my nose twice per day, and he seems to have given me a lifetime supply (I think it's two liters).  This is certainly a situation in which I need mind over matter, because all of that fluid rushing through my head sort of feels like I'm drowning.  But I'm not.  So I close my eyes tightly, open my mouth wide, and squirt the solution up one nostril.  Gravity pulls it out of the other nostril almost instantly, and like a whale clearing its blow-hole I snort out the remaining fluid.  Yea.  Grumpy.  But it has to get better soon.

3)  The radiation is burning my esophagus and swallowing is painful.  Dr. Radiation Oncologist gave me some liquid tylenol with codeine, and that helps a little bit.  Also, I met with a dietitian to get some tips on what foods will feel better.  She said that water will be one of the most painful things, and it is.  She said to go for things with a little bit of thickness to them, but not too much texture.  For example, mashed potatoes, smoothies, cream of wheat, and ice cream.  These have all been excellent suggestions, and indeed I am a bit more comfortable at mealtimes eating mushy foods such as these.  Ice cream in particular is fantastic because the cold is a bit numbing.  Overcoming this problem is definitely a case of mind over matter because I have to stay hydrated in order to ease problems 1 and 2.  Grimace and take it down, hbomb.

I'll get a nice break from radiation over the weekend, and then I should finish up on Tuesday.  I'll definitely be weakly stumbling over this finish line.  No triumphant arms pumping the air.  At this rate I'll be lucky if I'm not crawling.  

Recovery strides, and gross what IS that?

I am making great strides down all sorts of recovery roads today.  For starters, no more loose button-up tops for this hot mamma!  An important step in not feeling sick is dressing in a way that's suitable for public consumption, so I ditched the baggy manclothes.  I wrestled myself into a snug little tank top and completed the outfit with leggings, skirt, shrug, and earrings.  Also, I pried away the last of the steri-strips from my incision and got an entirely unveiled look at the mastectomy remains.  Interestingly, the drainage tubes left snake bite-like holes in my armpit.  This is in contrast to how I imagined them; I didn't have the courage to closely examine things while the tubes were in, and I always imagined the tubes coming out of the same hole or out the end of the incision.  But no, two bonus holes were made for the drainage tubes.  Again, no wonder they were causing so much of my pain.

Another recovery stride is a device to control what I'd estimate is 40% of my nerve pain.  Have I described the nerve pain in the blog yet?  Did I tell you that normal pain relievers do nothing for nerve pain?  It feels like someone heated up a sewing machine needle and started sewing up and down my underarm from the armpit to the elbow.  I think it might also be along my back/ribs a bit.  Yea.  If I don't move, it goes away.  However, anything that causes rubbing, vibrations, or (heaven forbid) goosebumps renews the hot sewing.  This crazy nerve pain inhibits my recovery by encouraging me not to move my arm.  Therefore, at the top of my agenda today was to devise a way to control at least some of the pain so that I could exercise the muscles.  I probably should have done this sooner, but only in the absence of tubes and gauze do I have the clarity necessary for engineering and execution.

What I did was cut off the leg of some running tights and dissected it a bit to fashion some slippage-preventing straps.  I slid this up over the affected area, tied it around my shoulder, and sha-zam!  The result is considerable relief because it protects from immediate friction.  Goosebumps, however, remain the ultimate enemy.  

The penultimate recovery stride of today is that I intended to do a bit of work from home.  I set up a work station in the West Wing (aka our guest room) and successfully passed the first three security levels on the government laptop.  I failed the fourth and final security thing, however, and so I am patiently waiting for my work's IT department to call me back.  If my recovery stays on this trajectory my plan is to dig through work emails from home this week and weekend, then show up at the lab on Monday ready for real science.  If I get to science while at home, that's all the better.      

I'm sure you've been waiting for it and here it is:  the gross thing that I am calling a recovery stride.  I'm taking it as evidence of recovery from chemotherapy, evidence of a renewing immune system.  Fact 1:  During chemotherapy, I had at least two and probably three sinus infections, the first one perhaps in December but certainly in January.  Fact 2:  Eleanor has had a runny nose and spiked a fever this weekend (poor dear), and I am currently rocking her cold but with milder symptoms.  It does not feel like a sinus infection.  Fact 3:  All morning long I had this sensation that I needed to blow my nose, but nothing would come out.  Finally, around noonish, something fell into my mouth from the sinus sky and choked me.  I spit it out and gagged in disgust.  I ran to the garbage disposal and slapped it in.  Fortunately I ran no water and activated no switches, for 30 minutes later I was ready to confront the unidentified falling object.  I reached in bare-handed to locate the object, but I immediately recoiled from its squish and slime and suffered a fair amount of painful goosebumps.  I extracted the object with a kebob stick and a spoon and placed it in tupperware for proper documentation and preservation.  Without further ado, alongside a penny for size reference, my sinus UFO:

Whaaaaat!?!?!  Super nasty!  How is that possible?  Is that of human or bacterial origin?  In case there is any doubt, it is laying exactly as it exists in its spongy form and is shaped exactly like my sinuses; it is not a random blob of mucus.  I desperately want Dr. Oncologist's input on my sinus UFO, so I submerged it in rubbing alcohol until my next appointment.  Perhaps you will think that keeping such a thing is the grossest part of my story, but I assure you, it's not.

And with a breath deeper than I've taken in months, I continue sauntering down my recovery roads.    

Dad was right

There was good news in my future, and now it is in my past:  the results of the cytokeratin staining are negative!!!!  Woo-hoo!!!!  There is no evidence of a tumor in my T9 vertebral body.  Also, now that I am personally reading the report, I see that the atypical cells were "rare" in my sample.  That is promising, it seems.  So, what do we do now?  We keep an eye on T9.  Another PET scan in 3 months.  Life goes on (albeit with some temporary back pain--turns out it's not so bad).

More good news regarding my platelet magic:  the solution to the riddle is that my body is producing antibodies to heparin, and these antibodies also attack platelets.  Heparin is a substance that gets injected into my port after every use to prevent blood clots in the port.  It is not surprising that after 4 months of continued exposure to heparin my body is producing antibodies against it.  The bummer is that these antibodies apparently also attack platelets, which I do not fully understand but certainly is not cool.  Solution:  no more heparin in my port.  Instead my port will be flushed with saline after every use.  This might put me at an increased risk for blood clots, but a girl can't live without her platelets.  By ceasing exposure to heparin, my body should stop producing anti-heparin antibodies, and my platelets should live in peace.  In the short term, Dr. Surgeon says she only needs my platelets to be at 50, so I should be good for Monday's surgery.  We'll check the platelets again tomorrow.

Regarding the contaminated platelets, it seems that I have emerged unscathed.  I asked how I was able to receive contaminated platelets, what part of the pipeline broke down.  Dr. Oncologist said that platelets have a greater risk of being contaminated than red blood cells due to extra processing, and that bacterial contamination is detected by culturing (think Petri plates).  Usually these bacteria grow up within a certain amount of time (probably 2 days), but the bacteria that were contaminating my bag of platelets grew slower and did not show their ugly faces until the platelets were already administered.  Hence the contamination being missed, and possibly hence me not being sick right now.  This last part is my own addition, and my thinking is that my body has been able to fight off these slow-growing bacteria that were not adapted to my Wonder Woman bloodstream.  Considering the incredibly forward technology that I have at my fingertips everyday at work, it continues to amaze me that such low-tech methodologies persist in medicine.  Said another way, I can't believe that we are still culturing to detect bacterial contamination.  But I digress...

Last but not least, my cold:  pretty sure it's turned into a mild sinus infection.  We're skipping the CT scan this time and going straight to antibiotics.  Gotta get this knocked out before Monday.  I don't want anything to delay Monday's main event.  The red spot that chemotherapy chased away is starting to come back a little bit, but you can only see it after a hot shower.  Nonetheless, I'm ready to no longer give this spot access to my body.  I have mentally quarantined it, but I need some surgical assistance.

NOW my back hurts.  Time to give it a break.  Thank you for being with me today.  Thank you for being with me this week.  Hardest week since October, to be sure.    

Eviction notice

Yes, this round of chemo has been harder on me than some of the others.  Yes, it could be because of the cumulative effects of multiple rounds of chemo (indicating that the next round will be the worst of all--yikes!).  Or it could be because my sinuses have taken on some unwelcome microbial tenants, and fighting them off takes more energy than I have available.

I have been toying with a cold for over a week now, but on Tuesday morning I woke up with green snot blooming and booming from my nose.  So I called it in to Dr. Oncologist's office, and they in turn called me in.  One blood draw, chest x-ray, and CT scan later, I was diagnosed with a sinus infection and told I was lucky.  It was of course not obvious to me how I was lucky, considering I felt like death two ways, so I asked for an explanation.  Apparently my white blood cell counts were good, but if they had been bad, I would have been admitted to the hospital.  I remind you that I'm supposed to have bad white counts 3-10 days after hard chemo (this is called nadir), and so I consider this stroke of white-cell luck to be further evidence that I have Wonder Woman-quality white blood cells.  (I really want to graph them for you, but the data from Tue. and Wed. are not available to me yet.)  My white cells and I, however, were ineffective at clearing the infection, and so Dr. O called in some troops:  cefipime (IV) and amoxicillin + clavulanic acid (pill for 21 days).  This is quite the eviction notice and then some; hopefully the pathogens get the message.  Being on antibiotics for 21 days will not be pleasant for the beneficial microbes that live in my gut, so I will try to pump them up with yogurt.  Sorry, guys, but that's the best I can do for you.

Today I am feeling markedly better.  Still some nasal discomfort, still feeling chemo-fatigued, still a bit dizzy, but the corner has been turned.  My friend Frank sent me a song to help me feel better, and I would be in trouble if this fantastic Stevie Wonder song DIDN't help me feel better.  I love music.

I am really starting to dread surgery (don't ask for details because I don't know yet and I don't like to talk about it).  To help me look past it, to see the end of all of this crud, my siblings and I are planning a Caribbean vacation for the end of cancer (and after I've accrued some vacation time at work, of course).  Well, "planning" is a bit of an overstatement, but we're going to do it and we're shopping for destinations.  I've never been to the Caribbean, but I think it will afford the perfect vacation for kids and adults alike.  Pictured above is a beach on the island of Culebra, which is momentarily at the top of our list.  Any suggestions from the audience?