Friday, July 18, 2014

User's guide to taxotere

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

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

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

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

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

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

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

Day 7:  The fog started to lift from the valley.  My mom could tell that I felt better just by looking at me.  All that ailed me was simply less.  Also, my secret weapon for Day 7 is a little being named Calvin.  Calvin is my newest nephew, and he was born three days after I started chemotherapy (March 7).  My sister has brought him up to hang out with me every Thursday after treatment.  He is a marvelous baby, never fussy, and a is glorious antidote to my ailments.  He and I lay around and chat for hours, then when it's time for my walk I push him in the stroller, which serves as a walker for me.  It's the best.
Calvin the Cure.  No pressure. 
This has nothing to do with this post, but he came to my chemo appointment last Friday and made everything better.  He's the best. 
Day 8 (today):  I think it's fair to say that I am already monumentally better.  At my appointment today, Dr. O said that my blood is good--I'm neither anemic or neutropenic.  I feel heavy, only a bit nauseous, and blah blah blah who cares because it is so good to feel decent!

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

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

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

Friday, July 11, 2014

All good things, all good things

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

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

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

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

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

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

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

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

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

But I am rather tired.  Rather.  Tired.    

Thursday, July 10, 2014

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
PICC line close-up
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.          

Wednesday, July 9, 2014

The ever-dreaded PET scan

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

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

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

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

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

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

Tuesday, July 1, 2014

Having blood in my blood feels good

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

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

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

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

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

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

   

           

Sunday, June 29, 2014

Welcome!

Dear Red Blood Cells From Another Human,

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

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

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

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

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

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

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

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

Cheers,

Heather's Red Blood Cells

Tuesday, June 24, 2014

Neutrophils rule!

Several people have asked me recently, what are neutrophils?  That is a great question, and I can't wait to show you how amazing neutrophils are.  I "phoned a friend" to help me with this post because she is a talented neutrophil enthusiast.  R is one of my best friends from graduate school and has been studying neutrophils (among other things) for several years.  I asked her to write a list of things my audience should know about neutrophils.  Here it is, complete with some truly amazing movies that show neutrophils in action.  (If you only have time to watch one of the movies, let it be the first one, "neutrophil chasing bacterium".  It will blow your mind!  This happens in YOUR body!)  So sit back, open your mind, and release your inner nerd!  Enjoy!

Neutrophils Fun Facts (in no particular order):

1) They’re the first line of defense against bacteria--when bacteria arrive someplace in your body that they’re not meant to be, like a cut in the skin or an abscess in the mouth, a variety of signals are released that make neutrophils migrate to that site, where they do their best to eradicate the infection.  Below is a movie of a crawling neutrophil chasing a bacterium.



2) They’re what pus is made of! The white goo that we call “pus” is actually a big glob of white blood cells, most of which are neutrophils, that have come there to fight infection. Also, one of their main enzymes contains iron, which is why pus is often a little greenish.

3) They live for less than a day--the life cycle of a neutrophil is estimated to be 10-18 hours, although recently a controversial paper suggested that it could be longer, more like 5 days. During their lifespan, they are born and mature in the bone marrow, and then circulate throughout the bloodstream, waiting to detect signals of an infection that requires their presence.

4) Neutrophils can totally change their shape as the situation requires. In your blood, they are completely round and can roll along the sides of the blood vessels. To squeeze between cells, they can deform themselves and squeeze through a gap roughly 1/10 their size. Once in the tissues, they flatten out and develop a leading migrating edge--imagine a bloodhound with its nose to the ground, scenting a trail; this is how they move when they’re trying to follow a chemoattractant path to get to an infection.
Below is a movie showing how neutrophils roll along the walls of a vein and squeeze through the wall when needed.



5) If they don’t find any bacteria to fight, they undergo programmed self-death (apoptosis), and then mark themselves with a molecular flag for other cells (macrophages) to clear them away.

6) They are superpowered killing machines. Neutrophils’ job in the body is to kill invading pathogens, and they can do this in a variety of ways:

Phagocytosis- Neutrophils can eat bacteria, and once they’re inside, kill them via production of extremely toxic free radicals (aka the things that antioxidants protect you from!). Amazingly, the neutrophils can kill the bacteria this way without damaging themselves.

Degranulation- not all neutrophils responding to an infection will meet up with a bacteria to kill. If a neutrophil senses that its killing abilities are needed but doesn’t know exactly where, it can release all of its toxic weapons into the environment near the infection. This includes a number of cool things:

Antimicrobial peptides- these are compounds that kill all kinds of bacteria, often by punching a hole in their membrane or starving them of necessary metals.

Digestive enzymes- neutrophils manage to store very powerful enzymes in granules without hurting themselves, but once they are secreted they go to town digesting everything in sight.

Reactive oxygen species- you know how you can put hydrogen peroxide on a scrape to disinfect it? Well, neutrophils not only produce compounds like hydrogen peroxide, they make an enzyme (myeloperoxidase) that makes these compounds even more toxic. Bad news for bacteria.

DNA nets- This is a supercool finding of the last ten years. Neutrophils can actually excrete all of their DNA, which is sticky and acts as a “net” to trap bacteria, keeping them in place so they can’t escape the other killing mechanisms.

7) Neutrophils are the most abundant immune cell in the blood-- they make up about 50-70% of your circulating white blood cells.

8) Because neutrophils are such powerful killing machines and can release their molecular weapons indiscriminately, it’s very important that we regulate their behavior and make sure they’re only deployed when and where they’re needed. This is accomplished by a step-by-step cascade of signals--picture the game mousetrap, where the neutrophil starts in the bloodstream and ends up killing bacteria in the tissues.

9)  (This one was added by Heather, because the relationship between neutrophils and neutropenia is a common question that I get asked) The importance of neutrophils in fighting infections is why it is a serious health risk to have too few neutrophils.  Having too few neutrophils (below 1000 in a blood sample) is called neutropenia.  Neutropenia can be caused by a number of medical issues, including chemotherapy.  There is one treatment that can help increase neutrophil levels, and that is a drug called G-CSF (granulocyte-colony stimulating factor).  The formulation I have been given is called Neulasta, but there are others as you can see if you follow the link.  This formulation in Neulasta is auto-regulated, meaning it starts to work once the levels of white blood cells are low.  This is why my white blood cell counts experience a lag--I'm neutropenic a week after receiving Neulasta, but then the Neulasta kicks in and fixes me right up.  Once my white blood cells increase, they get rid of the Neulasta and my body takes care of itself again.  This is important because you wouldn't want Neulasta, or any formulation of G-CSF, working all the time, because having too many white blood cells is a different kind of problem.

Please post questions in the comments section. R and I will either answer them ourselves or direct you to a resource that can.  We hope you enjoyed learning a bit of biology today!  Also, for those of you who pay attention to every detail (ahem sisters), no I did not write this post on my sickest day.  I pre-wrote it and set it to post automatically for you, my dear readers.  All my love!