The Future - PET Scan Results

What does the future hold?  None of us really knows the answer to that question.  All our life we spend planning for our future and anticipating that first driver’s license at 16, sip of alcohol at 21 (ok, I know many of you started before 21), buying a car, buying a house, having children and eventually retiring.  Along the way, we imagine the joys that each of these feats will hold.  We don’t think about the potential car accident, the agonizing hangover, sleepless nights with a newborn or broken pipes in the home.   When we look to the future, we generally anticipate happiness, not sorrow.  It is with hopeful anticipation that we approach each day.  

After 14 hours of limited carbs (only from my spinach and broccoli) followed by a 12 hour fast, I eagerly guzzled my 450 ml (approximately 15 ounces) of fruity-flavored, but gritty barium.  15 minutes later, I was escorted to a brightly lit, small dressing room warmed to 76 degrees by a space heater.  It pleased me to see the familiar 30-year old technician that had performed my previous 2 PET scans.  After the usual confirmatory data, he updated me about his 16 month old child and goals for him and his wife to move to New Mexico (where his family resides).  I pointed out my bulging veins from which to draw blood, but of course, talking about veins always scares them away.  Although the first attempt failed, leaving a small bruise in its place, switching to the other arm provided good venous return to obtain my blood sugar and then place an IV for my radioactive tagged glucose to look at metabolic activity in my body.  

About 50 minutes after injection of the radiotracer, I am transferred to the scanning room where I must lay on my back with my arms above my head for nearly 20 minutes.  Similar to the no carbohydrate diet, this is the most painful part (for me) of obtaining a PET scan.   Roughly 3 months ago, I started experiencing shoulder and arm pain, so I didn’t have this pain with my first PET scan.  We performed an ultrasound of my arm at that time, to assess for a blood clot.  Since the pain was intermittent and often associated with shooting nerve pain and hand/arm swelling, we assumed the pain originated from the port pushing on the nerve, vein and artery bundle (particularly since it often worsened while laying down to sleep at night).  Fortunately, the nerve pain has subsided since removing the port, but I suspect my ligaments partially calcified, due to decreasing my use of the arm, which in turn, created more pain with certain movements.  At least this is fixable with exercises and physical therapy.

Twenty minutes later, the whirring of the CT scanner machine ceased and the table slid me out of the tube.  Thankful to finally be able to move my arm, I gathered my purse and belongings and sauntered to the lobby to drink coffee, which the imaging center thankfully supplies, and my Reeses peanut butter sticks hidden in my purse.  Later, the tech returned to the lobby with a CD loaded with my images and I headed to the car to enjoy my hot bacon laying on the dashboard (in a Ziploc bag). It tasted so flavorful.

Knowing my future plans were pending the results of this scan, I was eager to hear the results.  But, PET scans are not easy to read and I would await the professional opinion of the radiologist before making any interpretations of my own.  Although I received the dictated report later that evening, they never say, “everything is clear of cancer” or “no abnormal findings found.”   Unfortunately, once you’ve had bulky disease and surgery, there’s bound to be residual debris and scarring, making subsequent scan readings more difficult.  I would have to await my appointment the following day to learn my fate.

Chris came with me to my appointment with the oncologist.  As usual, she came in with a smile on her face and asked if I had seen the report.  “Of course,” I answered, “but I’m interested in your opinion.”  Luckily, she had reviewed the images with one of our favorite, meticulous radiologists who felt that the scan looked good and similar to the scan taken mid-treatment.  The remaining lymph nodes were much smaller, less active and likely just residual frames of their cancer-filled shells. There were a couple of “new spots” or nodes but they were small and considered likely inflammatory.  Given their small size, we will just keep an eye on them and recheck a CT scan in 3 months (NOT A PET SCAN!)  Of course, if they are bigger, then I’ll probably have to get a PET scan (but, if possible, I’ll vote for a biopsy instead).  

In a nutshell, results were good and I will not be undergoing any further lymphoma treatment between now and October.  My goal will be to gradually increase my stamina to a full-time schedule at work and regain the strength in my muscles, eradicate or learn to tolerate the hot flashes, and rehabilitate my right arm to full functional capacity.  All of this, while maintaining my sanity, wit, perspective and hopefully, blog! I can’t thank you all enough for all the positive thoughts and prayers.  I truly believe that God listens, and the abundance of support certainly lifted my spirits, making this journey more of a blessing than a curse.  

Stop waiting for Friday, for summer, for someone to fall in love with you, for life. Happiness is achieved when you stop waiting and make the most of the moment you're in right now.

It is good to have an end to journey towards, but it is the journey that matters, in the end. ~ Ursula LeGuin

Bacon sizzling on the dash (to eat after the scan) & chalky barium to drink, for the PET scan.

Returning to Work

Monday came and went in a flash.  Once again, my mind struggled to fall back to sleep after a 5:00 am hot flash and my body wrestled its way out of bed to attempt a run before heading into the office for the first time in over 6 months.  Normally, I would have suspected the anticipation and excitement of returning to work to produce my early arousal, but the cumulative effect of sleep deprivation over the 3 days prior, prompted a quick onset to sleep.  Nope, it’s still the drenching sweats, arm swelling and joint pains that awaken me, despite the cessation of chemo and my port removal.  Knowing that I was only working a ½ day alleviated my fears of losing steam before seeing my last patient of the day.  Yet, I was eager to see my colleagues, coworkers and patients again and looked forward to the challenging puzzles and decisions that would come my way during the day.

After a quick stop at Starbucks for a grande flat white with 3 shots of ristretto (a concentrated espresso shot), I figured I could make it at least 6 hours.  When I walked through the double set of doors, I laid eyes on the beautiful decorations and posters that welcomed me back.  To my left, sat my new medical assistant, who arrived well before me and had already taken care of a couple of phone calls that managed their way to my desktop.  After an hour of re-training, I was back to work, doing what I love and missed so much.  

It was a relief to step back into the pace of work and see so many familiar faces. Without a doubt, though, I was tired by the end of my 4 hours of seeing patients.  Before I could even finish all my work, I headed home for a two hour nap (both Monday and Tuesday).  It’s clear to me that my biggest struggle in the upcoming weeks will be battling the fatigue.  Prior to lymphoma settling into my chest, I was running 40-50 miles per week and my typical day started at 6-6:30 am with an hour run and then I’d see patients from 8 or 9 am until 6 pm.  I’d usually take another 1-2 hours to address phone messages left throughout the day and prescription refills.  Then, I would go home, grab a quick dinner and settle in my home office to finish up loose ends and review electronic correspondence from other providers, lab and imaging results and address any internal flags (messages from coworkers) or emails.  Most days I would work until 11 pm - midnight and attend to any non-urgent work the following day or on the weekend.  I can’t even fathom accomplishing that routine at this time.  

If I were to estimate my energy level compared to when I was able to perform the above routine, I would suspect I currently have about 40-50% of my previous energy level.  Both days that I worked this week, I attempted a run and didn’t reach more than a mile before settling into a walk and although I set out to run just 3 miles, I was only able to complete a 2 mile walk/run.  While I saw patients for only 4 hours, I was exhausted.  My body required a nap when I returned home and despite the mid-afternoon nap, I had difficulty keeping my eyes open past 8 o’clock.  The cumulative effects of interrupted sleep summoned me to bed like the cries of a baby calling for its mother.

While I am frustrated with my lethargy, I am thrilled with being able to return to a career that stimulates my mind, utilizes my skills and provides the opportunity to help others.  I’m hopeful that I will strengthen over the next several months and will continue to actively strive towards regaining my agility and abilities. I may never run another marathon (and that doesn’t sadden me), but I’d like to be able to open bottles and lids more easily and arise from a squatting position without having to hold onto a chair or grab a counter.  I’d also like to dump the mid-day naps and sleep a full 6-7 hours at night, without awakening.  Yet, despite it all, I am alive.  I smell the fresh air in the morning and hear the birds chirping outside my window, which fills me with joy.  I get to hear the laughter of my children, watch the Mariners pull out another walk-off homerun win and celebrate birthdays & weddings with friends and family.  Life is a blessing and each day is a gift from God.  I will do my best to make the most of each day that I’m granted.

Pleasure in the job, puts perfection in the work. ~ Aristotle

ABILITY is what you're capable of doing, MOTIVATION determines what you do, and ATTITUDE determines how well you do it. ~ Anonymous

Two different patients brought these gorgeous pink roses on my first day back.  

Getting Ready – Port Removal

A glance at the alarm clock told me it was 5:30 am.  Unable to get comfortable, I decided to arise.  Upon heading to the bathroom to grab a cold drink of water, I decided to quit fighting the sleep and just get ready for the day.  It was not the anticipation that awakened me throughout the night, but the increase in swelling and throbbing in my right arm.  The port in my right upper chest needed to go.  Finally, today was the day. 

In order to arrive on time for my port removal, we needed to leave by 7:40 am, so obviously I was awake plenty early.  My first decision for the day was determining what to wear.  Assuming they would make me take, “everything off from the waist up,” I didn’t worry about what I wore on top, as I’d be enrobed in their lovely, fashionable patient gown.  But, with the hot flashes, I needed to be sure not to dress too warmly, in case they had me draped (covered) during the procedure.  The last thing they (or I) needed was me sweating profusely while they are trying to suture or apply dermabond (glue to close the incision).  So, I settled half way between pants and shorts and wore capris, which covered my legs to just below the knees.  After dressing, I realized that my legs weren’t recently shaved.  I’ve always wondered, “Do men worry about shaving their face as much as women worry about their legs?”  Of course, a 5 o’clock shadow in a man, is admired by many women.  The next thought was, “Why am I continuing to lose hair on my head while my legs continue to grow hair at the same pace, if not faster, than usual?”  Doubtful that I would figure those answers out today, I proceeded downstairs to find Chris washing dishes (if you haven’t learned already, he’s nocturnal and that’s why he falls asleep so easily during daylight hours).

Chris wished to tag along, in hopes that he could observe the procedure (of course, I secretively hoped he would video record it).  I’ll admit, we’re both science nerds and love to watch medical shows and continually learn about science, medicine and technology.  Sometimes we wonder how we ended up with 2 kids that can’t stomach it at all (one even faints during movies that imply blood or pain).   

After circling the parking lot to find a spot, which is odd considering I even have a physician parking permit, we finally found one that wasn’t a compact (so our car wouldn’t get dinged when opening the door).  We hustled to diagnostic imaging and then waited in line for 10 minutes to check-in.  After being asked if my procedure was related to an injury (hmm…not that I’m aware of, but I was asleep when it was placed), we sat in the quiet lobby, with its brightly lit, colorful fish tank, and waited to be summoned. 

When my name was called, Chris and I rose to leave the area.  Unfortunately, the delightful assistant informed Chris that he could not observe the removal of my port, as it occurs in a sterile operating suite.  This surprised me, as the Youtube videos that I viewed showed minimally sterile technique, in an office setting.  Yet, I wouldn’t argue with them being more cautious since my white blood cell count (WBC) is still at half of the lower limit of the normal range (placing me at higher risk for infection).  Nonetheless, I was taken to a generic women’s dressing room, thankful that there was only one other person present (less explaining to do).  Within 5 minutes of changing into my lovely blue, faded gown, I was escorted to the operating suite down the hall.

Upon arriving at the diagnostic imaging suite, I was greeted by a humorous, outgoing, dark-skinned male (we’ll call him John) and a petite, gray-haired, fair-skinned woman.  These two would be helping the physician assistant (PA) during the procedure.  John was very polite and cracked jokes about what type of doctor I was, hoping that I could perform bariatric surgery on him.  I replied with my best winky-eyed face, “No, but I’d be happy to help with diet and exercise changes.” Meanwhile, the other assistant discussed my allergies and when I informed her of my adhesive allergy, she showed me the tegaderm-like bandage that they utilize and I retorted, “Well, I’ll know within 30 seconds whether I’m allergic to it or not.”  After informing them that the SCCA (Seattle Cancer Care Alliance) uses a bandage that doesn’t cause me to break out in hives, the assistant ran down to SCCA and picked up the special IV 3000 orange bandage. 

In order to avoid the gore that grosses my children out so much, I won’t dive into the details of the procedure--you can watch a Youtube video if you’d like to see it.  They draped me from head to toe, so I couldn’t watch (bummer).  While the PA was tugging on the hardware to grab the sutures holding it in place, I noticed that I wasn’t completely numb in certain areas.  When he infiltrated the area with lidocaine, nerve pain shot into my shoulder blade and down my arm, just like the pain I’ve been encountering intermittently over the past 2 months.  As irritating as that knife-like jabbing felt, it excited me.  I felt encouraged, that indeed the port may be the cause of my arm pain, since it lay directly on that nerve.  Of course, the swelling that ensued after the removal and the fact that the cavity created would eventually fill, left me with some concerns regarding persistent pain, especially if scar tissue decides to inhabit the region.   Nonetheless, this procedure brought me one step closer to returning to work and to the life I previously knew well.  

Before everything else, getting ready is the secret of success. ~ Henry Ford

   Picture with port & catheter extending into the neck...now, without the port & catheter! 

Lessons Learned

Last Friday was the first Friday where I wasn’t either receiving chemotherapy or still nauseated from the previous week’s infusion.  While I couldn’t escape the cumulative fatigue accrued during the past 6 months, a slight sense of freedom percolated.  Without the IV (intravenous) lines holding me down for 4-5 hours, Chris and I were able to assist in moving our daughter and her 2 roommates into their new apartment.  With my weak and swollen right arm, my job was to sit (on her desk chair) and watch over the moving truck (and the belongings within), while the other parents and helpers removed all their goods, towing them to the 3^rd floor of the building across the street.  Instead of being tied down with IV tubing, I was held down due to my decreased arm strength and inability to lift, providing time to reflect on the lessons learned during these past 6 months.

As many of us don’t learn until we’re retired, living with another person 24/7 is challenging.  During this unique opportunity of being with the one we love nearly all day, every day, you learn all the idiosyncrasies between each other.  The differences in how one washes the dishes, the activities they perform while eating, or how they roll up the garden hose (or not) are all viewed with a more critical eye.  And yet, the biggest source of conflict generally encompasses how we utilize our time. 

Cancer provides a different vantage point of time.  Taking the extra time to place dirty dishes in the dishwasher or throw away mail after you’re done viewing it, may not seem like much, but can be a crucial act of love.  When two or more people coexist for the vast majority of each day, you see how each other utilizes their time.  While this insight may be enlightening (you may not realize how many tasks your spouse actually accomplishes during the day), it also can be a major source of frustration.  If one person is reading, sleeping, playing games or watching television, it can stir jealousy or frustration in the other as they are working to organize, clean or care for the home.  It reminds me of the bible passage about Martha and Mary when Jesus came to visit and Martha couldn’t understand why Mary wouldn’t help with preparing the meal (Luke 10:39-42).  If the other person isn’t doing what we value or think they should be doing, then we become critical, or even envious.  Yet, envy only breeds discontent.  To be happy, we must accept each other’s differences in priorities, approaches and abilities, while maintaining good communication so that both parties are satisfied. 

Freedom doesn’t buy happiness.  It’s the choices that one makes and approach to life that provides happiness.  Happiness won’t come from a game, a gift, or social outing, it truly comes from within.  The more grateful we are, the more we recognize and appreciate the blessings surrounding us and the happier we feel.  As annoying as my fatigue, hot flashes and arm pain have become, it’s much easier to ignore it, when sharing laughter, smiles and cordial conversations with friends and family.   The ability to learn, challenge myself and freedom of movement (i.e. walking/running) are much more rewarding to me than sitting in front of a computer or television, watching the world through someone else’s eyes.   So, although I’ve spent the past 6 months off of work and had the freedom to read, watch TV, etc., I never felt happy doing that.  I’ve always felt happiest doing what I love most, which is listening to people’s histories, discerning and assessing the issues, and developing a strategy to help them.  When my low white counts inhibited me from practicing medicine, I turned to writing, both as an outlet for me and with some small hope that I still may help others while not actually seeing them face to face.   Rather than being frustrated when I awaken at 2, 3, or 4 in the morning, I would just roll out of bed and tap on the computer, instead of lying there, hoping to fall back asleep.  Vacuuming or mowing the lawn probably would’ve been frowned upon at that hour (although it is amazing how bright it gets by 4 in the morning).

Lastly, as my father used to say, “Don’t judge a book by its cover.”  During the past several months, even as my hair started thinning, energy diminished and skin darkened (a side effect), I would hear, “You look good.”  While a part of me appreciated the compliment, another part of me realized how easy it is for people to “get it together” externally, no matter how they are feeling internally (be it physical or emotional).  That’s why I’ve encouraged, in previous blogs, mindfulness of others.   If people appear rude or disrespectful, treat them with kindness, as we never quite know what struggles lie internally.  Showing all people respect, courtesy, and forgiveness, will not only improve our own sense of worth, but may pass this joy on to another.  This is how the “pay it forward” campaign works.  Even if you’re financially strapped, you can pay it forward by letting someone go ahead of you in line or leave a close parking space for an elderly person or mom with little kids.  This small gesture, may alleviate someone’s joint pains and replace it with a smile of relief or gratitude.

Although my muscles may be weaker, I feel my heart is stronger and brain is wiser, from this journey.   I’ve learned a lot about myself while experiencing the roller coasters of menopause and maladies of cancer.   Even though the chemotherapy (at least this round) has ended, the brutality of it, remains.  And yet, I am a survivor.  Although there may be foods that I continue to avoid, swelling or pain that never resolves, or strength that I never regain, through this experience, I have gained so much more.  Cancer can’t take away the spiritual and emotional growth nor the true happiness provided by the love and support of caring friends and family.  Cancer isn’t a death sentence nor should it be feared, it provides the opportunity for us to pause and recognize our tenacity and the abundant blessings and beauty around us.  Sometimes our greatest strengths shine in our weakest moments.              

Forget what hurt you, but never forget what it taught you.   ~ Anonymous

The only mistake in life is the lesson not learned.  ~ Albert Einstein

A beautiful & captivating pastel drawing of a bald eagle, from a talented friend of my youngest son.