Oh, the Places I’ll Sleep…A Spouse Perspective

They say the longer you are with one person, the more you start to think alike.  Many of you may only know Chris, my husband, as the one who is sleeping wherever we go.  Well, you can’t judge a book by its cover.  Behind that façade, is a loyal, thoughtful, analytical, yet humorous gentleman.  He may not always give the best first impression, but once he gets to know you and feels comfortable around you, you will see the warmhearted man inside.  Despite his impeccable ability to sleep anywhere, his attention to details and unfailing love are probably two of his more enduring qualities.  That being said, I will now present Chris’s perspective of my journey (or my perspective of his perspective). 

As with anything new, you ponder about how this is going to change your life.  The shock of hearing your spouse has cancer is never an easy bone to chew.  My first thoughts were about the financial ramifications, particularly with 2 kids in college and one soon to be.  However, Chris has always grounded me on this aspect and said, “Just think of it as taking our retirement a little early for the next 6 months.”  Sometimes he knows just the right thing to say. 

Of course, thinking about retirement brings images of couples that I know who found they had difficulty being at home with each other 24/7.  I’m not sure if Chris was ever concerned about the impact my leave would have on his lifestyle or our relationship, but I certainly was a little worried, after stories that I’ve heard.  Yet, if anything, I feel our relationship has strengthened during this ordeal.  While we both enjoy our own pursuits, we’ve had more opportunities to communicate.  Although he may be folding clothes upstairs and I’m watching some stupid talk show on TV while going through email, I’ll call him downstairs to look at the “coincidentally”, goofy coordinating outfits between the host and their guest.  The next thing we know, we find ourselves jocularly comparing the outfits like one of those Highlights magazine puzzles, “Find the differences between these two pictures.” 

Spending more time together has actually made it easier to look beyond our faults and shortcomings as it generates greater perspective.  Rather than catching that glimpse of what each other’s day is like and wondering why something didn’t get accomplished or what consumed our day, we actually see each other’s approaches and respect them more.  For instance, Chris or I may be reviewing Facebook posts while awaiting our food to be warmed in the microwave or attempting to open a web page to pay an online bill, but soon we share something funny and go off on a tangent.  Though these tangents may take us away from the task at hand, we are truly enjoying each other, while sharing a chuckle or two. 

Although the prospect of death and suffering are uncomfortable for most, Chris and I, much like comedians, enjoy making light of uncomfortable subjects.  Humor brings smiles, laughter and often perspective, which are all welcoming in my eyes.  While waiting for the ultrasound tech in a darkened room, I lay on a gurney, in my gown and a thin sheet (to keep me warm).  I jokingly cover my head with the sheet, laying still, with one arm dangling off the bed.  We both laugh, pondering what people might think if he posted (on Facebook), this picture of me as if I was in a morgue with the caption, “Is this a bad sign?”  So, he takes a picture of the event, but only to mark the memory for us, as we don’t want to alarm anyone or make others uncomfortable.  I almost die of laughter, with tears pouring from my eyes, at how well we understand each other.

I’m certain that Chris has other insights and stories that he’d tell if this blog was truly from his perspective, but I’ll reserve those for another day.  Today, I am hoping that you all can see an uncomfortable or difficult situation from a different perspective and try to make the most of it.  See the humor in life and be thankful for those that support you.

Humor is the great thing.  The minute it crops up, all our hardnesses yield, all our irritations and resentments flit away.  ~ Mark Twain

We are all a little weird and, life is a little weird and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual weirdness and call it LOVE.  ~ Dr. Seuss

Enjoying his son's track meet.

Even the Seattle Aquarium...visitors walking by replied, "Oh, how cute!"  

Strength

Strength can be measured in many different ways.  Some may believe the strongest person is the one who can lift the most weight (Paul Anderson, 6,270 pounds), run the fastest (Usain Bolt, 30mph) or hit the longest homerun (Jose Canseco, 540 feet).  Even after a run, my husband feels that I am the strongest (smelling, that is).  For me, strength cannot be measured in pounds, speed or distance.   Strength not only comes from within but is reinforced through the tenacity of others. 

Before displaying any symptoms of lymphoma, I would regularly perform frontal and side plank exercises, holding the plank on my front for 2 minutes and more than a minute on each side.  When the cough, fever and fatigue started, I felt weaker but could still maintain the plank position for more than a minute.  At the beginning of chemotherapy treatments, I was able to maintain the 1 minute planks and sometimes go even longer, especially after the cough and fevers subsided.  Now, however, the cumulative effects of chemo on my energy and muscle strength has weakened me significantly.  During the week following infusion, it only takes 10 seconds in the plank position before crumpling to the ground.  Opening jars or bottle tops, cracking ice cubes from the tray, and holding a pan or pitcher of water (even with both hands) has become increasingly difficult, requiring aid from my husband or son.  My running race pace is a full minute/mile slower than last year and stopping to rest or walk is a frequent occurrence on my morning “runs”.  But, in so many ways, I feel stronger than ever. 

For many years, my running was my barometer for personal strength.  My GPS watch carefully logged my weekly mileage and mile pace, so that I could reassure myself that I was maintaining my strength and “youth”.  Through age 45, I happily maintained the same mileage pace for a marathon as I did when I ran my first marathon at age 30 (8 minutes/mile or about a 3.5 hour marathon).  Running was my method of regaining stamina and losing weight after pregnancies.  It has always been reliable and a source of energy, strength and relaxation.   While I struggle more to lift my knees so that my foot clears the sidewalk or drive that one step further, I still find comfort in the ability to be able to pray, think and admire the abundant beauty surrounding us, while “running”.  Yet, the greatest strength still cannot be measured in miles.

Travelling this journey, I’ve realized that it isn’t my strength propelling me forward with a positive outlook and joyfulness.  Truly, I cannot lay claim to the strength that God has provided.   It has been through the tremendous community, friends and family that encompass me, like a net tightly woven together, to lift me and hold me when I feel weakest.  Although the journey is long and tiresome, there are many who have remained by my side throughout, lifting me up with their encouraging words, prayers, thoughts and gifts.  To my dismay, I suspect that I would have abandoned ship long before this, and so these people are much stronger and more faithful than I.   Rather than dwell on my shortcomings, however, I’d like to think that it’s a lesson learned to hopefully improve upon, for the future.   My realization of my need to be further engaged and encouraging to friends, family and community is one of the greatest lessons learned through this expedition. 

I find myself admiring the everyday heroes more and more.  The beauty of social media and the internet is that you don’t have to rely on news networks to provide information, since much of what the news chooses to report is negative.  If you look around, you will hear of people “paying it forward” or making the most of a terrible situation.  On my community web page, I have heard several stories about families having a dinner paid for by an anonymous person and many times it was for a family barely making ends meet, but trying to provide something special for their child’s birthday.   There is the community fundraiser to support a family whose child was blinded by a brain tumor and many more beautiful examples of love and strength.  These are the bonds that strengthen.  Together, we can provide a foundation that no terrorist can break.  If we can avow to perform one encouraging, uplifting or simple act of love daily, we will strengthen not only ourselves, but the community and world in which we live. 

You have within you the strength, the patience, and the passion to reach for the stars and change the world.  ~ Harriet Tubman

Infusion #9 – A very long day

8:30 am – My earliest appointment at SCCA yet, which means no time for a morning run and we couldn’t take the HOV lane today.  As typical, I had my blood drawn first and 30 minutes later was brought back to see the doctor.  Unfortunately, I’ve been experiencing right hand swelling (see picture below) and arm pain for nearly 2 weeks (the swelling started the day before my last infusion, but the pain started 3 days later).  With that and my delayed hypersensitivity reaction to Bleomycin, causing abdominal pain and fever/chills, we had a lot to talk about and changes to make to the game plan.  Additionally, my ANC (absolute neutrophil count) was only 200 (the lowest Ievel I’ve experienced; normal level is 2,100-7,000).  Despite our original conversations (back in January) of not proceeding with chemo when my ANC dove below 250, my Monocytes were very active which shows that the marrow is working well, so we elected to proceed with today’s infusion, acknowledging that I would need to be extra diligent with monitoring temperatures and avoiding illness.  Many people have asked about using GCSF (a bone marrow stimulant) to help promote the return of my white cell count, but the reason we don’t utilize it, is because it vastly increases the risk of lung toxicity when administered with Bleomycin, something I can’t risk as it is often permanent. 

Given my Bleomycin reaction was not pulmonary related and the sensitivity reactions can usually be managed with Benadryl (diphenhydramine), Tylenol (acetaminophen) and Zantac (ranitidine), we added these 3 meds to my premedication routine.  This, of course, extended my time with the doctor and prolonged my infusion (since it’s up to 9 intravenous medications now and the pharmacist needed to prepare the new ones).   We started infusion around 10:30 and ended at 1:30.  But, wait, there’s more.  My arm swelling and pain still required addressing.  The differential diagnoses most likely for this problem is either a blood clot (DVT) or a port issue, since it’s only in the arm/hand on the side of my port.  An appointment was made for an ultrasound at 2, with check-in at 1:45, which meant we had 10 minutes to grab some lunch at the cafeteria.  Fortunately, because of the late hour, lines were fairly nonexistent and I obtained my Thai Mango salad and Chris a pepper steak stir fry with 5 minutes to spare.  We took our lunch up to the Diagnostic Image waiting room and ate while waiting. 

The good news:  I didn’t have a DVT and thus would not have to worry about being on anticoagulation for the remainder of my treatment and beyond.  Unfortunately, the alternative is a problem with my port, requiring removal of it.  Going under the knife and having a PICC (peripherally inserted central catheter) line introduced into my other arm somewhat disheartens me, as I fear that it may cause swelling in my other arm too.  On the flipside, the port is a constant irritant and still quite tender, making sleep difficult at times.  Yet, the PICC line will be along my inner arm and dangling into my elbow region which may be irritating with running and sleep as well.  But, I can do anything for a couple of months.  Yet, I elected to give it another week to see if it resolves or may be related to my fall on the treadmill or lifting bags out of the car.

After the ultrasound, it was back to the doctor to discuss the plan and we finally returned home a little after 4 pm.  With Benadryl on board, my eyes were heavy and I craved sleep.  Coming home to packages on the doorstep, kept me from falling asleep.  One package was a photobook that took me the last 3 months to complete (from our summer 2015 travels).   The other one was from a neighbor and friend and consisted of a cooler filled with ice packs, whipped cream and berries (blackberries and raspberries) along with an angel food cake and some yellow tulips.  That simple, loving gesture not only removed any worries and distress from the day, it lifted my spirits and I tossed out the idea of a nap and watered my plants and grass outside to experience a little sunshine and fresh air.

Although it was a long day, Chris and I always make the most of our visits.  Yes, he may sleep during some of the time (he says it was the Benadryl that put him to sleep today…see below).  It gives us time to talk, plan, play games or even just catch up on our email or his phone games.  Emailing will be limited now that Benadryl is added to my regimen.  With eyes half open and the brain at 50% power, I can’t promise my email responses will be intelligible.  So, if you don’t receive a response for some time, you’ll understand why.   That being said, I hope that the Benadryl is worn off enough to make this blog post coherent.  It certainly hasn’t lessened the steroid-induced insomnia.  That being said, I need to replenish my sleep to survive this busy weekend filled with a funeral and of course, Mother’s Day.  Happy Mother’s Day to all my beautiful, motherly friends! 

If you can’t fly, then run, if you can’t run, then walk, if you can’t walk, then crawl, but whatever you do, you have to keep moving forward.  ~ Martin Luther King, Jr. 

Difficult to see, but my right hand is so puffy that I can't completely make a grip. 

 

A long day for Chris...the Benadryl made him very sleepy.  The mutterings he made were very entertaining to my infusion nurse, Kim.  

Hot Stuff!

Hot flashes are weird.  They sneak up on you, while you’re minding your own business and, “POW,” like a lightning strike, a surge of electrical hot flames billow from your core to your face until sweat is dripping from your forehead, neck and middle of your back.  Remarkably, your body temperature remains normal despite the fury inside.  Even thinking about a hot flash or the tiniest bit of exertion (such as tying one’s shoes) can cause a fire to stir inside one’s body.  Although hot flashes occur in more than 2/3 of North American women and nearly all women who have induced menopause (most commonly brought about by chemotherapy), we still know very little about what truly causes these sudden throes of fury.  We know they occur with decreases in estrogen levels, as ovarian follicles (eggs) diminish, but we’ve never connected the line to how that produces a sense of overheating.  The best explanation that I found was from an April 12, 2012 article from U.S. News and World Report, which appeared to recognize the importance of the issue since women between ages 44-65 is the largest demographic in the world.  (Maybe our politicians should take note!)

In this article, they discussed a study of peri-menopausal women with daily hot flashes.  Women wore a 24-hour heart rate monitor and recorded their hot flashes.  During the hot flashes, a decrease in the parasympathetic regulation of the heart rate occurred.  What does this mean? The parasympathetic nervous system is part of the autonomic nervous system, regulating our heart and breathing rates while our body is “at rest”.   The sympathetic nervous system provides the adrenaline or surge necessary for “fight or flight”.   In other words, our circulatory system, as it is being regulated by the nervous system, seems to be sending signals to our brain to cool our body off by increasing our blood supply to the skin, which in turn causes flushing and sweating.  Or, as Sandra Tsing Loh illustratively describes in her October 2011 article in The Atlantic, “during menopause, a woman can feel like the only way she can continue to exist for 10 more seconds inside her crawling, burning skin is to walk screaming into the sea—grandly, epically, and terrifyingly, like a 15-foot-tall Greek tragic figure…”

Despite the sleeplessness, fatigue and annoyance, I am grateful to endure this change in my life while progressing through chemotherapy.  I’d much rather deal with this nuisance while I’m already exhausted, so I can take a restorative nap or break when needed.  To assist me, Chris has happily shared his napping expertise, although I’ve not perfected his rapid onset and awakening techniques just yet.  Nonetheless, learning to fall back to sleep quickly after awakening from night sweats can make those 3-4 nighttime awakenings less evident during the day.  But, if you see the bags under my eyes or the "color" in my cheeks, you'll understand why.  

I don’t have hot flashes.  I have short, private vacations in the tropics. ~ Anonymous

Infusion #8: Nothing Compares to U

What an eventful week.  The Queen of England, Elizabeth II, turned 90, Prince, the flamboyant musician/artist died and we had crazy, record-breaking high temperatures in the Pacific Northwest this week.   Seeing all the beautiful pictures and posts about the Queen, motivates me to work hard to live as long as her (as long as I can look that agile and elegant).  She is truly an amazing leader who has lived through multiple wars and conflicts, watched the progression of technology including nuclear bombs dropping in Japan, and numerous weather disasters.  Through it all, she has remained poised, steadfast, and witty.  She possesses trustworthy eyes and a lovely, cheerful smile that puts people at ease.  We may not always agree politically (I don’t actually know much about her political views), but she has remained open-minded and malleable over time.  Yet, I respect and admire her as a strong person who is constantly in the lime light while managing huge responsibilities when she became queen at age 26.  Long live the Queen. 

Prince was a character of a different sort.  While he is best known for his original music style, fashion and name changes (even if we couldn’t pronounce his symbol name), he appeared reserved and stayed true to himself, not seeming to worry about the opinions of others.  Like Michael Jackson, he learned to not only speak through his music but also expressed himself through his clothing, dance moves and hairstyles.  While he wasn’t on my favorite top 10 artists of the 80’s list, his songs and lyrics were rhythmic and meaningful and he definitely shaped other artists and the growth in the industry.  Rest in Peace, Prince. 

So, how about that weather?  When you’re peri-menopausal and hot flashing 5-10 times an hour, hot weather isn’t always your friend.  However, it justifies the wide-open window in the bedroom, which refreshes the night and delights my mornings with the sounds of various birds and frogs along with the sweet aroma of blooming flowers.  It’s been a very interesting ride over the past month.  The weather seems to correlate well with my infusions.  For instance, it started raining this morning, just a couple hours prior to my infusion time and it’s forecasted to rain in the Seattle area for the next 3 days and then stay cool for 2 more days (upper 50s-low 60s).  Just about the time when the nausea subsides and energy starts to improve, the weather turns to sunny and 70-80 degrees, improving my mood and allowing me to enjoy the outdoors further.  This is when my blood counts reach their lowest levels, however, so it’s better for me to venture outside than remain indoors, where germs tend to accumulate and spread more easily.  This is just another example of how God cares for me and how your prayers are contributing to my journey.

That being said, I have completed 2/3 of my chemotherapeutic regimen without a glitch (i.e. without a delay or significant modification of treatment).  My ANC (absolute neutrophil count) increased from 300 to 600 (normal range 2,100-7,000).  YAY!  However, I reacted more severely to this infusion than any in the past.  After returning home, I suffered the aches, fever/chills and nausea similar to the flu, requiring me to take something for relief (despite all the pre-medications given to diminish these reactions).   Fortunately, the medication worked and not only did the fever dissipate (from 99.6 back down to my norm of 97 degrees F), but the nausea subsided so that I could enjoy the wonderful taco salad meal created and delivered by one of our many fabulous neighbors and the gingerbread cookies freshly made by another neighbor.  I can’t say enough about the important role of all the love, prayers and support in keeping me upbeat and healthy throughout this journey.  I am truly appreciative for the cards, gifts, letters, notes, comments, messages, meals, treats and utmost thoughtfulness and care.  In fact, I believe this definitely contributes to my well-being and wards off evil diseases, despite the increased risk with my low counts.  Thank you all and a big warm hug from me (from a safe distance)! 

Walking with a friend in the dark is better than walking alone in the light. ~ Helen Keller

I awoke this morning with devout thanksgiving for my friends, the old and the new. ~ Ralph Waldo Emerson

Aww...Mornings

As I lay in bed listening to the early banter of birds chirping and chasing each other, I can’t help but feel alive.  The smells of the blossoms and golden nectar wisp through the open window of my room, opened to ward off those irrepressible hot flashes during the night.  Light filters through the slats of the shades, willing my eyes to open and reminding me that God’s beauty awaits me, so embrace the day.  Even the man-made sound of the coffee maker churning, ready to fill the air with the fragrance that awakens our senses and the taste of energy.  Everything about the morning is fresh and lifts my spirit to tackle whatever challenges arise throughout the day. 

There is no schedule or structure to my day.  Some days I even forget the day of the week.  Yet, my to-do list is long.  Putting off years of projects and mundane tasks have resulted in a 3 page list of activities to keep me busy.  Even if I tackled one project daily (and some take several days), I could not finish the list within the next 3 months.  But, it won’t stop me from trying (or procrastinating further by blogging instead).   Some jobs are simple, like breaking down the boxes that are stacked in the garage from all the Amazon packages ordered during the year.  Others, such as filtering and purging the stacks of papers and memorabilia in the den, may take days.  Our den is filled with old memories from races, previous jobs, school activities, etc.  Recalling and sharing these past events, whether it be internally or with others, often doubles the anticipated time of completing “the task at hand”.   Nonetheless, reminiscing stirs a quiet joy inside, reflecting the wonderful events and the beautiful people with whom we’ve shared these magical experiences that have immensely shaped our life.

What today will bring, I still haven’t decided.  Like many mornings, it will start with a run/walk to help me organize my thoughts and ideas (surprisingly, I am writing this blog before my run, which usually supplies most my material).   This “quiet time” allows me to reflect on my shortcomings of yesterday, focus on means of improving and then coordinate a plan for today.  Whether I’m going to work or spending the day at home, starting the day with a run, is nearly a necessity to ensuring a successful day.  It’s prayer time, a ritual of sort.  Running not only relaxes and provides the focus and energy needed to tackle each day, but it brings me closer to God and allows me to listen to His plan for my life (which may not always be concurrent with my plan, e.g. this lymphoma journey).   So, when people ask, “How can you keep running while you are going through this?” My response is, “How can I not.”  When I am running, God is by my side, and eliminating His presence would eliminate all purpose in this life. His strength gives me strength and in many ways, running is as vital to me as food.  Yes, I can fast for a time, but as soon as I start running again, I feel energized.

Not everyone needs to run, to experience the same power.  This same spirit may be achieved through meditation, prayer, even housework.   Throughout my life, I’ve learned that reflection is essential to achieving improvement.  We will never achieve perfection, as perfection, much like beauty, is in the eye of the beholder.  But, we can continually improve ourselves, if we listen closely and work hard towards that goal.

Today’s Facebook post from the Dalai Lama:  Happiness depends on inner peace, which depends on warm-heartedness.  There’s no room for anger, jealousy or insecurity.  A calm mind and self-confidence are the basis for peaceful relations with others.  Scientists have observed that constant anger and fear eat away at our immune system, whereas a calm mind strengthens it.  Changing the world for the better begins with individuals creating inner peace within themselves.  

Enjoying God's beauty on a sunny morning run in March. 

Infusion #7: Stooping to an all-time low

Unlike previous infusion Fridays, there was no time for sleeping in today.  With a 9:15 am appointment came the uncertainty of Seattle-area traffic.  Would the carpool (HOV) lane require 2 or 3 people (deeming us ineligible to use it)?  If we’re unable to use the HOV (high occupancy vehicle) lane, then we’d relinquish to the scenic route (twisting and turning through all the neighborhoods).  The difference is a 15 minute versus a 25 minute commute to travel the measly 6.5 miles to the hospital.  Not knowing our fate, we left 25 minutes early.  Much like carrying an umbrella in fear of rain, the fact that we left early ensured the 2 person carpool lane was available and our rapid arrival. 

Despite our 10 minutes to spare, the check-in line weaved through the entry door, since there was only one receptionist checking in patients.  After receiving our stickers assuring we aren’t sick, we didn’t wait long before the polite laboratory technician accessed my port and drew blood to check the effectiveness of the medications.  Unfortunately, our appointment with the doctor wasn’t until 10 am, so we had to wait 30 minutes in the lobby before vitals were obtained, another 15 minutes to see the doctor and 30 minutes later (10:45 am), we finally reached the infusion center.  My ANC (absolute neutrophil count) was 0.3, the lowest I’ve ever recorded, landing about 85-95% lower than normal levels (normal is 2.0 - 7.3).  After our typical, benign, uneventful exam and lab results discussion, which often deviates to gardening topics, we agreed to continue with chemotherapy again. 

The infusion went smoothly and I was delighted to discover a friend in a bay not so nearby.  We talked until one of my bags needed to be exchanged and then I returned to talk again.  It made the time fly by more quickly and before I knew it, it was nearly 2 pm and my treatment was completed.  Another one in the books. 

It’s getting much easier now.  Chris and I come prepared with our books, kindles, puzzle books, and even games to play together.  He always gets his nap in, which is more difficult with me because we have to verify my name and date of birth for every chemo drug that is hung and so I would be interrupted quite often.  Usually, I feel so wiped out afterward that I will take a nap as soon as we get home.  But, I wasn’t going to miss the gorgeous sunshine this Friday.  Instead, Chris and I went down to the cafeteria where they make wood-fired pizzas and I had a pesto chicken one while he ordered all-meat.  We sat outside, soaking in the sunshine while devouring our perfectly done, cheesy concoction.  This is not the hospital cafeteria food of the old days.  

I apologize for the decrease in blog postings.  It’s not that I haven’t been inspired or have thoughts and experiences to share, but the clarity of my prose has been lacking and I don’t want to publish either uninteresting, uninspiring or lackluster work.   That being said, I have at least a dozen or more partially written works that I will be trying to fine-tune in the upcoming weeks.  With my low ANC, I will be home, when not enjoying the fresh air.  No meetings or gatherings are planned, so I hope to get a few minutes on these overcast mornings to wrestle with my brain and produce something readable and entertaining.  Thanks for being patient with me and for your continued support and prayers!  God Bless you all.

Keep your thoughts positive, because your thoughts become YOUR WORDS.   Keep your words positive, because your words become YOUR BEHAVIOR.  Keep your behavior positive, because your behavior becomes YOUR HABITS.  Keep your habits positive, because your habits become YOUR VALUES.   Keep your values positive, because your values become YOUR DESTINY.  ~ Mahatma Gandhi

Dear friends, from Kansas, whom I met after Hurricane Sandy in New Jersey, came to visit and brought me this Wonder Woman bracelet.  It embraces the power and beauty that a journey like this can provide.  Thank you, Kurt & Susan!