Infusion #3: Modifications Made

Yesterday marked my day 1 of cycle 2 (aka my 3rd out of 12 chemotherapy infusions).  Chris and I arrived at 10 am, to a completely empty waiting room at the cancer care center, a sharp contrast to last week's overflowing crowd and standing room only.  I was summoned immediately for my blood draw to once again evaluate my blood counts and metabolic panel (kidney and liver functions as well as blood sugar and electrolytes).  Since accessing my port is necessary for my infusion, the phlebotomist volunteered to set up IV access at the time of the blood draw.  This is the first change from my previous appointments and actually quite convenient because I avoided a poke in the arm and I already had placed EMLA cream (a numbing agent) on my port to decrease the pain. However, this is a much more laborious process than just sticking a needle into the skin.

Accessing a port that is buried under the skin requires extra training and caution to avoid infection risk, so they clean repeatedly with swabs containing a comprehensive anti-bacterial agent (but unfortunately, smells horrific, worse than rubbing alcohol).  They then place the needle with IV tubing directly between the prominent 3 dots of the port (see picture below).  Being on the thinner side of average, my port and these dots are easily visible, which nursing and lab staff seem to appreciate.  After the tubing is setup, it must be securely covered to not only stay firmly in place but also to avoid potential bacterial exposure near the site of entry to such a major blood source.  Unsuccessfully, I tried to coerce the phlebotomist to give me a different adhesive covering than I received at the last visit, since I had a striking rash/hives in the area of the adhesive that lasted nearly a week despite steroids (I have an adhesive allergy).  As she was unsure of what dressing was used, she used the usual TegadermÔ, which rapidly developed into a fiercely itchy and red rash (see picture).  Regrettably, by the time I arrived at the infusion center (around 11:40), the covering required removal by the RN and replacement with a hypoallergenic bandage instead.

Preparing for the blood draw further, the phlebotomist grabbed all her blood tubes (with their pre-filled preservatives) and pre-filled syringes of saline and heparin to flush the port before and after the blood draw.  It's amazing how many supplies are needed just to perform a simple blood draw.  What usually takes 5-10 minutes, including the numerous times that they verify your name, spelling and date of birth, this time it required nearly 15-20 minutes to complete this entire process.  But, I was in no hurry as my appointment with the doctor followed and not scheduled to start until 10:30 because she utilizes the test results to completely assess my health status and ability to proceed with the imminent infusion.

After the blood draw, I returned to the waiting area, where there were now 2 persons, other than my husband.  Chris was busily showing an elderly woman in a wheelchair, how he uses his smartphone to access information (to explain the symbols from the coat of arms on his sweatshirt, in which she had inquired) .  I could hear them chatting as I was undergoing my blood draw, but was pleasantly surprised and impressed that Chris was actively befriending others in the waiting room (this is usually what I enjoy doing and he's usually focused on his magazine, phone or kindle).  Nonetheless, this lovely woman was clearly enamored by his hospitality and we later ran into her at the infusion center where she struck up another conversation as she was leaving the infusion center and I was still receiving my medications.

No sooner had I sat down in the lobby, before I was called back by the doctor's medical assistant to obtain my vitals (weight, blood pressure and temperature).  He proceeded to take us to the exam room where he reviewed my medications, allergies and current symptoms.  After gathering the information he needed, we were left alone to read or play on our cell phones.  Given my difficulty staying focused and the 20 minute wait, I found myself bouncing between the book that I brought and reading emails on my phone.  Chris was eagerly catching up on the time-limited games that he plays with friends via his phone (such as words with friends, dice with buddies, word feud, hanging with friends, matching, and when he brings his headphones, songpop).

When the doctor arrived, she immediately gave us the good news that my counts were virtually the same as the ones prior to my last infusion 2 weeks ago.  While my ANC (absolute neutrophil count) is still at a level that potentiates the risk of infection, it remained at 0.6 (2.0-7.0 is the normal range).  Without any signs of infection seen during the thorough exam that my doctor performed, I was set to proceed.  However, we discussed my symptoms, side effects and future testing and followup prior to advancing to the infusion center.  In reviewing the insomnia side effects and the subsequent fatigue associated with the high dose steroids that I receive as part of my pre-medication, we elected to trial a decrease in dosing. Steroids are not without side effects, so we chose to decrease dosing by 40% of the usual dose of 10 mg and see if this still helps with the nausea but without causing the insomnia (I only sleep 1-1.5 hours on the Friday and Saturday nights after infusion).   The risk of doing this, is that I may have an increase in nausea or vomiting, but I can take oral compazine if this occurs in the first 48 hours and ondansetron (Zofran) after 48 hours, if necessary.

Well, by looking at the timing of this post, you probably guessed that the decreased steroid dose has not made a tremendous impact yet on abating the insomnia.   Thus far, the nausea is greater than usual but as long as I'm not moving or standing for long, it is tolerable.  If I need to be on my feet for more than 10-30 minutes, I would definitely take the oral medications or suffer the consequences.  If the nausea manages to stay at this level, I will probably try to go without the steroids at all, for the next infusion.  But, it is a balancing act and in medicine, we often have to choose between the side effects of medications and the potential consequences of not using them.  In this particular situation, neither is life threatening (insomnia or nausea) unless it leads to vomiting and dehydration, which can in turn increase the risk of infection and hospitalization.  In the back of my mind, I wouldn't mind eliminating the steroid medication because of it's GI risks (increased reflux and ulcers), association with high blood sugars and bone density risk (increases osteoporosis risk).  My pre-medication infusion still consists of 2 other glorious anti-nausea medications that are quite long acting.  Aloxi (palonosetron) has a 40 hour half-life* and Emend has a 9-13 hour half-life.  The dexamethasone (steroid) has a biological half-life at 36-54 hours (which correlates well with my 2 nights of sleeplessness).

All in all, the cancer journey must remain a malleable process.  As long as no material changes are made to the 4 active cancer-killing agents for Hodgkin's lymphoma, adjustments can be made to try to balance out risks, side effects and patient desires.  Never be afraid to mention something that bothers you in any healthcare journey or process.  If I hadn't mentioned my insomnia and the distress it was inflicting or the irritability of the pruritic rash from the adhesive, no changes would be made and I would be unnecessarily suffering. It's empowering to work with your physician to resolve treatment issues and improve the overall management of your condition, especially when the ill effects can be potentially more harmful in the long run.  

* Half-life refers to the time it takes for half of the drug to be eliminated from the blood stream, by the average, healthy person. Biological half-life is used when a drug has effects in other areas and how long it takes for half of the initial effects to be eliminated.  

 You cannot change what you refuse to confront.  

My port-a-cath in the upper right chest wall with catheter extending into the neck. 

The arrows point to the 3 dots outlining where to insert the needle into the port.  You can faintly see along the periphery, the redness remaining from yesterday's brief encounter with adhesive.  The vessels above and below the port are somewhat distended due to the catheter (a long tube that extends into the blood vessel, in this case, the jugular vein in my neck).  This decreases the caustic nature of the medication allowing it more time to mix with my blood decreasing damage to the vessel wall.

Sharing is Caring

One of the most amazing expressions of love for your friend or neighbor is providing them with a meal or a word of encouragement in their time of need.  Since I’ve never been much of a cook and am not creative when it comes to food, it’s always been difficult for me to sign up for providing meal provisions for others (my husband does most of the cooking around our house).  Yet, ever since my neighborhood coordinated a meal provision schedule for Chris and I, my appreciation for this gracious gift has blossomed further.  Not only does it provide more time for us to spend together (along with our one remaining teenage son living at home), it eases meal planning on appointment days, decreases trips to the store and decreases food aversions by avoiding nauseating smells that can occur when cooking. 

Although you might expect that we’d get sick of each other since I typically would be gone from 8 am to 8 pm on most work days, Chris and I have actually worked well together over this past month of our journey.  You see, it’s not just my journey, it’s his journey too.  He has been with me from the beginning—at every appointment, scan, surgery, and even provides for me when I’m fatigued and don’t want to move.  When my energy improves, we give each other space but work on different projects around the house or sometimes together.  In regards to our children, this time together has allowed me to help my high schooler with his physics project, arrange appointments with his career counselor, review assignments with him and listen to his presentations for his FBLA (Future Business Leaders of America) competitions.  While we had hoped to play board games together (Pandemic, Catan, etc.), I’m usually spent by evening time and it just hasn’t happened yet.  Hopefully, we’ll find time during his upcoming break. 

As far as shopping goes, I can typically get my son or Chris to pick up bread, milk, creamer and fruit/veggies that they like to eat for lunch.  But, if there is more items needed, I will wait a week after chemo when my blood counts have peaked (still well below normal, but better than infusion day).  Even after using disinfecting wipes on the germ-infested grocery carts, they still require you to pay for your groceries and no matter which line I choose, there always seems to be either a mom with a bazillion kids or an adult coughing up a lung who follow me to the same checkout.   In fact, I’ll bet there are more germs spread at the grocery store than in most doctor’s office lobbies.  That being said, I shop late at night, when hardly a soul can be found or mid-morning on a weekday when there is usually more employees than customers. 

On my appointment days, it is immensely helpful to know that we don’t have to plan or cook a meal once we return home.  Sure we could buy a pressure cooker or use a crockpot to have something ready, but then my whole home will smell and I never know how that will sit upon returning home.  It’s also delightful to know that dinner will be ready by 6:30 or earlier rather than 8 pm or later which allows me to hit the hay by 10 or 11 pm, without heartburn. 

The most incredible discovery is the realization that one is surrounded by so many loving and giving people.  Neighbors that I hardly knew have introduced themselves by bringing a delicious meal with such creativity and compassion that uplifts the soul.  Our exposure to new dishes and flavors is not only refreshing but helps avoid the monotony of our own, typical meals.  It also helps me avoid food aversions to the foods I normally enjoy.  In addition, we learn new recipes such as a homemade granola made with seeds, nuts, oats, coconut among other ingredients (see recipe below).  There are even websites available now to help coordinate meal provisions:   https://www.takethemameal.com/ which allows the coordinator to document allergies, likes and dislikes and is loaded with meal tips and ideas.  One neighbor brings smoothies to help me disguise the chalkiness of the glutamine with tasty fruit and yogurt combinations and provides a snack pack for Chris and I for infusion days.   It is very heartwarming to experience such kindness and I can’t thank you all enough for all the meals, cards, letters, gifts, blog replies, amazon deliveries, Facebook messages, and so on that keep encouraging and providing hope!  When you watch a sad story or see something horrific on the news, I want you to always remember that there are so many more good people in the world and this experience is just one of those reminders to me.

The greatest feeling in life is to make a meal and share it with people.  ~ Rachel Ray

You must not lose faith in humanity.  Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty.  ~ Muhatma Ghandi (another one of the great leaders and peace makers of my era, along with Mother Teresa and Nelson Mandela)

Mix ingredients and bake on a large cookie sheet in a thin layer at 300 degrees for 45 minutes, stirring every 15 minutes.  

A Hairless Proposition

Before my first infusion, when the oncologist was reviewing the various side effects of my chemotherapy regimen, she reported, “you will most likely lose your hair,” to which I expressed no surprise, as I anticipated this outcome.  “It will likely grow back gray as well, and the cooling treatments,” as if she were reading my mind, “we don’t recommend them as they can actually increase the risk of recurrence of cancer on the scalp.”  I include this piece of information as so many people have posted on Facebook about how great these cooling caps decrease hair loss during cancer therapy.  Reviewing the American Cancer Society (ACS) website, they concur in the avoidance of scalp cooling treatments due to the increased potential risks.    

After hearing this news, I inquired about how soon this hair loss might occur and her response was, “in 3 weeks.”  Well, 3 weeks has come and gone and there are no signs of hair on my brush, in my sink or in the shower drain.  I feel cheated.  Okay, maybe that’s too strong of a statement.  But, when you’ve been pondering about the benefits of hair loss for more than 3 weeks, you actually lament the lost opportunity.  It’s similar to the pregnant patient who isn’t “showing”--nobody knows that you’re pregnant if they don’t see that familiar bump.  Hair loss (alopecia) is somewhat of an initiation into the cancer club.  This being said, I am often the only patient in the cancer care lobby with a full head of hair. 

Besides saving money on shampoo, conditioners, hair spray and haircuts, alopecia can save an enormous amount of time.  Even though I have fairly short hair, it still takes me 10-15 minutes every morning to “do my hair”.  In one week, that adds up to 1.5 hours, over 6 hours per month and over a 6 month period, nearly 40 hours.  In addition, I was looking forward to seeing the appearance of my beautiful, bald scalp.  How often do we get to re-live our baby days and see or touch every contour of our scalp, yet alone start anew with a brand new hair style?  There are wig possibilities and lots of elegant hats.  Two of my friends and coworkers knitted some stylish caps that I’ve been adorning and yearning to wear, but it either needs to snow, plunge in temperature or I need to lose my hair.  None of which have occurred since starting chemo. 

While some of what I said was pure sarcasm, most my friends who’ve known me for some time would admit that I don’t put a lot of time into outward appearances, so alopecia would not be a huge ordeal for me, while it may be quite distressing for others.  I use makeup for only the most special occasions.  I’ve never been a great judge of fashion (thank God I have a daughter who is more attuned to style) and I’ve never known what to do with my hair because, quite frankly, I’ve never really been a great judge of outward appearances.  Heck, my kids have been commenting about my, “eye-eye brow” or uni-brow for years.  I just accepted it as the way God made me.

Maybe it was my upbringing or possibly I just felt there were more important concerns in the world, that I never paid much attention to trends, fashion or style.  When walking down the street or seeing someone across the room, my first focal point drifted to a person’s eyes or expressions to gauge their thoughts or feelings.  My dad used to say, “You can’t judge a book by its cover,” and I’ve learned this to be true on many occasions.  Rather than looking at someone’s bald scalp or painted on eyebrows (which is quite trendy right now), I would see the joy in their smile or fear in their eyes.  What’s inside a person proved much more significant.  A person’s character, charm, wit and intellect remain more glamorous and endearing than outside appearance and don’t wash away with the rain or wind.  That being said, I will embrace whatever happens.  According to the ACS, alopecia usually occurs between 2-4 weeks after the first infusion and for me, the four-week mark will be this Friday.

Good looks fade but a good heart keeps you beautiful forever. 

I was hoping to avoid this for the next 6 months. 

One of the hats knitted by a friend. 

A Joyous, Sleepless Night

Once again, I find myself awake at one in the morning, wondering where is all this internal energy coming from?  I haven’t had any medications in the past week, so I can’t blame the steroids.  Chris has not taught me any new miracle tricks to napping during the day.  In fact, I haven’t slept during the day for several days, possibly even a week.  So, I must deduce that it’s either a late effect of a medication I received during infusion or an unexplainable phenomena (in medicine, we refer to this as idiopathic).  Nonetheless, it hopefully will lead to an enlightening or entertaining blog post. 

Naturally, I turn to my computer to help me fall asleep.  Hmmm, not sure I would ever recommend this treatment as a physician.  You see, writing can be very relaxing.  Well, maybe not as relaxing as running.  Ok, you’re not buying that one either, how about reading?  You get the picture.  Everything I enjoy doing can be relaxing, but unfortunately is associated with a certain level of mental stimulation as well.  If I read a book and find it perplexing or I’m wondering what is going to happen next, I don’t want to set it down.  This is no different with writing or running.  As I progress further into my writing, I feel the need to explain myself or paint a mental picture that may strike an interest or image in one’s mind that gets you thinking (and hopefully transfers some of this energy to you). 

So, what does one contemplate when lying in bed, trying to will themselves to sleep--any and every thing.  First off, I started remembering that I need to look in my ski coat pocket for my black head band that disappeared about a month ago and I’ve been wanting to wear while running.  Then, I move to wondering if the tingling at my fingertips is due to compression of a nerve in my neck or shoulder, which have been bothering me, or a side effect of the doxorubicin (and the reason I am taking the glutamine and vitamin B6).  Thoughts of Chris and I’s first date 23 years ago on super bowl Sunday arise shortly after.  Little did I know then that the simple invitation to breakfast after mass would lead to 22 years of marriage and 3 marvelous kids.  Lastly, I dwell on the events of the day and the special moments spent with whomever I encountered that day. 

Yesterday, I was fortunate to see many of my family members as we celebrated my brother-in-law’s 60^th birthday.  It was exciting to see everyone in a festive mood and catch up with some of my sister’s friends whom I haven’t seen in years.  Jokes were shared and many people had questions about my cancer journey, treatment side effects and even the occasional recommendation for what may help me most.  Once again, I say, laughter is the best medicine.   

With my family, there is no shortage of humor, especially when celebrating one of the decade birthdays.  More importantly, there is no shortage of love.  Bringing 5 out of 7 siblings together (only two live out of state) with their children and grandchildren is no small feat, but we all love each other truly and deeply, to the extent that we will make every effort to attend an event where we can celebrate together.  It’s akin to having our own mass or church service.  We gather together in celebration of life.  We pray together, break bread together (in this case, it was garlic bread) and share in the feast (there’s never a shortage of food either).  We even sing together (in this case it was the “Happy Birthday” song) but have been known to break into song when the Sound of Music is on TV.  Family, both our immediate and extended (which often includes friends as well), is a priority in our lives and we’ve been blessed to have parents who instilled this value in each of us.  I suspect it was this overwhelming outpouring of love and concern that led to this sleepless night, which is why I call it a joyous, sleepless night.  For many, tomorrow will be celebrated with friends watching the super bowl.  For me, however, I will be home (avoiding the potluck and potential germs) with just Chris and Peter (my family) and this should provide ample time to sleep if I feel the need. 

Family:  Where life begins and love never ends.  We may not have it all together, but together we have it all.   

This photo was taken at my parents' 50th wedding anniversary (nearly 11 years ago).  My nephew, Ben, was not present and
Cindy's husband, Prince, and 3 kids were also not in the picture at this time (literally and figuratively). 

Friday Blood Draw Day

On the Fridays that I don't receive chemotherapy, I still have to hightail it to the cancer center for a blood draw.  My CBC (complete blood count) is monitored closely to be sure that I am not getting into a dangerous range.  Primarily, my oncologist is looking at my white count, which if too low, increases my susceptibility to infection.  If my white count drops below a certain level, she may place me on prophylactic antibiotics and/or recommend avoiding public areas (grocery stores, restaurants, etc.)  Because this number is ever-changing, I am always advised to avoid any sick contacts, sushi, sprouts & other foods as well as potlucks (where you don't know how the food is prepped, cooked or how long it's been out).

Unlike most Fridays, when I opened the door to the cancer center this week, the waiting room was packed.  It was so full that they directed patients and accompanying family members to the coffee shop area just outside their doors.  Chris would have been thrilled (he hates coffee) if he had accompanied me, but he didn't today, since it was just for a quick blood draw.  Glancing around the room, I chose to stand in the crowded waiting area, since I appeared to be the youngest and healthiest person present.

No more than ten minutes later, I was summoned for my blood draw.  The polite phlebotomist obviously knew me only as a patient needing a CBC.  As she asked for my name and birth date, to verify that she indeed procured the correct patient, I inquired about the wait time for results and to determine exactly what tests were being drawn today.  She reported the typical 30-60 minute wait, to allow the oncologist to review the results (they can't release results without them being seen by a physician first).  After explaining that I am a physician and capable of reading my own results, she hesitantly received permission to deliver the results directly to me, so that I could leave immediately after the blood was analyzed (typically about 10 minutes since only a CBC was being drawn).

I happily waited by the coffee shop, inhaling the invigorating aroma, wanting for another cup of that silky, uplifting Seattle manna.  While waiting, my phone rang,  It was my mother-in-law describing the beautiful, snowy, but warm conditions at their cabin, where we would head to later, after Peter and Kim wrapped up with school and work.  The call was a wonderful distraction from the wait and shortly after pushing the end button on my phone, the phlebotomist returned with my printed results in hand.

The CBC results were reassuring.  My neutrophil count increased from 600 to 1700 (normal is 2000 - 7000), which made me ecstatic as I enter a weekend filled with family gatherings.  I'll still be cautious to avoid large, public settings and my mask and hand sanitizer will be handy when necessary (i.e. church).  However, paranoia is replaced by elation as this bodes well for remaining on schedule for my next infusion on Friday the 12th.  While my oncologist, who called me a few hours later, was a little more cautious, as she sees signs in my monophils, that my counts will be dropping further, I still couldn't help but be happy, since I know things could be much worse.  Hurray for the simple joys and satisfactions!

Simple pleasures are life's treasures. 

A Good Run

Today, I was lucky to awaken to overcast skies, without rain.  Weather determines my capability of running outdoors or on the treadmill.  If it’s cold or rainy, I don’t risk the unnecessary stress on my body and will keep my exercise indoors.  If I’m lucky enough to have a clear and warm day, I will head outdoors, allowing me to explore my surroundings and observe the abundant beauty and ever-changing landscape as I drift along.  Effectively, my mind will wander and my creative juices emerge, distracting me from the heavy breathing and pounding footsteps.

What entails a good run?  It’s not how fast or far you run, but how you feel while you’re running or when you finish.  A good run changes your mood, makes you feel exhilarated and accomplished.  Whether it’s highlighted by the sun glistening on the smooth-as-glass lake, the eagle perched on a leafless branch outlined by the bright blue sky or an energizing song that lifts the spirit.  Sometimes, all of these things occur on the same run, as they did on Wednesday. 

Even if none of these appear on a run, a run can be good if you accomplish the goal you set out to attain, achieve a pace faster than you anticipate, or return with new ideas, a fresh outlook on life or ready to attack the day.  Well, this was the effect of my Wednesday run.  It started out with a little tugging near my port as if my skin was being pulled by the motion of my right arm swinging.  The legs struggled to get moving and my feet felt like they were barely clearing the pavement as I shuffled along.  But, I was out there and determined to get back into shape. 

It didn’t take me long before the rhythm started to return and I soon forgot about the chest discomfort as I tried lifting my feet up and lengthening my stride a little further.  Soon, the music beat with the same tempo as my stride and my breathing steadied which released a feeling of freedom and strength once again.  If you’ve never experienced a “runner’s high”, you can only imagine how this emancipating feeling takes over your entire psyche, driving you to push longer and harder than you were previously and making the world feel limitless, if only for that moment.  It heightens your awareness of your surroundings, fills your mind with solitude and generates clever solutions, ideas and insight that we may struggle for hours to create while sitting at a desk. Unfortunately, it is often difficult to document these wonderful thoughts and ideas while you are running and when I return home, I am typically too sweaty and cold to stop and write them down.  If an idea is so important that I must retain it, I will stop and dictate it into my phone.  But, alas, stopping mid-run often tarnishes the benefits and inhibits me from completing the inspiring, cerebral experience. 

While that may have been my only great accomplishment on Wednesday, it made me forget about cancer and helped me feel normal.  As a good run should do, it reminded me of all the blessings that surround us and how even the darkest day can turn around with a little change of attitude (and a good run).  And now, you see a glimpse of why running has and will remain an important facet of my life.    

I run because I can.  When I get tired, I remember those who can’t run, what they would give to have this simple gift I take for granted, and I run harder for them.  I know they would do the same for me.  ~ Anonymous

A New Day

There’s nothing like a good night’s sleep to reset the mind and mood.  My mind was filled with the song, “Day by day,” when I awoke this morning.  For those who may be unfamiliar with the Godspell song, it goes like this:   Day by day, oh, dear Lord, three things I pray:  To see thee more clearly, Love thee more dearly, Follow thee more nearly, day by day.

Yesterday, I started a blog entry, but it just didn’t sound right to me, so I scrapped it.  It was difficult to feel inspired with the waves of nausea ebbing and flowing.  In addition, I could hardly keep my eyes open long enough to complete a thought.  Thus, yesterday resulted in a “chill day”.  A day where I just chilled on the recliner, wrapped up in my heated throw blanket, watching TV or listening to music while attempting to read a magazine or book.  I still have yet to finish a book (after a month since diagnosis).  My concentration and ability to keep my eyes peeled are skills from the past.

After nearly 9 hours of rest in bed, I feel refreshed, rejuvenated and ready to attack a new day with passionate fervor.   My goals for today:   finish the last 18 pages of the book that I had started well before I was diagnosed, try a new walking trail today, go through some stacks of papers that have been staring me in the face and return library books/movies.  It may not seem like much, but for today, I’d feel delighted by accomplishing these feats. 

What else is on my mind?  Well, I can’t help but feel happy about the fact that I haven’t picked up some illness along my visits to the hospital and clinics.  I hear about the flu or stomach viruses making their way around and despite my low white count, I have managed to remain unscathed.   In addition, I’m not enduring chest pain, bleeding, vomiting or any of the other potential side effects and risks from my disease and treatment.  For this, I am truly thankful! 

Every morning starts a new page in your story.  Make it a great one today.  ~ Doe Zantamata