Thursday, July 31, 2014

Things I love more deeply than previously appreciated

I have several ideas for blog posts, some of which I've jotted down in my notebook, but I just haven't taken any time for writing lately.  Instead of writing, I have crammed all of the joys of summer into my two good weeks--hosting, traveling, swimming, gardening, grilling, visiting, and playing.  It's been a miniature summer in mid-July, and it's been lovely.

All of this activity has had a happy effect:  I've quite forgotten about my ongoing medical treatments.  Until today, that is, when I realized that tomorrow is, you know, treatment day.  Sigh.  Only two more hard ones to go.  A month from today I'll have my 15th lifetime hard chemotherapy and the worst of its aftermath behind me.

Another happy effect resulted from the activities occurring after being sick for virtually the entire months of May and June.  This is a deeper appreciation for the things that I love.  It's been a strange feeling for me, because I feel like I have always appreciated even life's most basic experiences.  Perhaps what I've learned is that there are a few things that I don't like to live without?  Or that I strongly miss when I'm incapacitated?  Below is a list of these things, in no particular order.

1)  Braiding my daughters' hair.  The pleasure is derived not from brushing or otherwise "doing" their hair, but specifically from braiding it.  I love to braid their hair.  After they make their braid requests, they sit or stand patiently in front of me while I braid-to-order.  Braiding-to-order is my favorite kind of braiding, because it tells me that they too enjoy it when I braid their hair.  I braid across the front of their heads, as is trendy these days.  Sometimes I join the braid with a ponytail in the back.  Sometimes I join the small front-braid with a larger braid in the back of their heads.  Sometimes I braid all the way around their head in what we call a braid crown.  I gently separate three pieces of their soft, colorful hair and weave weave weave.  It's wonderful.  We might have to set the alarm a little bit earlier this school year to ensure that we have time for all of this braiding.  

2)  Analyzing data.  I don't mean synthesizing information or thinking about problems.  I mean opening a spreadsheet, organizing columns of data, perhaps adding a column to transform the data (just a small tweak), choosing the best statistic, perusing the results, and selecting the best graph.  Oh man.  It's heavenly.  I'm a scientist by trade, so you might assume that I knew I enjoyed this sort of thing.  What I am saying is that I didn't know how deeply I loved it until I couldn't do it for weeks and weeks, and then I could again.  

3)  Ian's singing.  My friend R and I took his broken guitar to the shop and had it repaired, and now he's singing and playing a lot more again.  His voice is like butter.  Real butter.  I can't live without butter.

4)  Finding a new recipe, cooking it, and eating it.  I am certainly no foodie, but after so many weeks of nausea and crappy taste buds (let's not count the weeks) I find myself longing for tasty food.  I enjoy cooking and baking, always have.  It is fun to find new, healthy recipes.  It is also a good time of year for cooking because of all of the delicious produce that is in season.  For example, on Tuesday my grandpa gave me some of his first eggplants of the season.  I knew I had to cook them before I got sick, so last night I tried my hand at eggplant parmesan.  I employed a three-stage coating method that I saw on the Food Network when I was in the hospital:  flour dredge, egg dip, breadcrumb (Panko) + parmesan dredge.  Then I pan-fried them and served them with normal pasta and marinara.  Oh man, it was both fun and delicious.  The kids even tolerated it.

5)  Nature.  Eleanor received a microscope for her birthday (I swear it was her idea, "Mom, I want to be able to look at small things!"), and now we go through life collecting things that would be fun to look at under her microscope.  Most of the time we don't even make it to the microscope; collecting nature with my daughters is sufficiently delightful.

6)  My family and friends.  Didn't think this one was possible.  Don't know that I'll ever be able to show you.  I'll spend the rest of my life trying, no doubt by occasionally employing 1-5 above.  If only I could send Ian in the mail to serenade you!  I supposed some baked goods will have to do.          

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.


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.