Monday, June 24, 2013

Chemo Brain: That's My Story and I'm Sticking to It

Marla Crider, Fayetteville, Clinton, breast cancer, patient stories
My charred Jimmy Dean muffin
Ahhhh, summer… The season officially kicked off on Friday, June 21, when the longest day of the year proved to be all that and much more for the author of this blog.    

Thursday produced another restless night prompted by profuse sweating and insomnia. I managed to get about two hours of sleep, then gave up all hope of catching a few additional hours of shut-eye about 2:30 a.m.   I retreated from my bedroom to the great room, where reading, listening to music and drinking Sleepytime (Yea, right) hot tea had become my new normal. I heard the Arkansas Democrat-Gazette hit my front door at its usual time of 4:30 a.m.  I was eager for new, more current reading material.  After just a few minutes of scanning the newspaper, I began having difficulty concentrating on the words in front of me.  It was as if my brain was hesitating and couldn’t translate what the eye was seeing to the human computer between my ears.  This frustrating experience seemed to be happening more frequently since the chemotherapy drugs - adriamycin and cytoxin - were first injected into my system in late May.

Friends who recently completed chemotherapy and are now cancer survivors have shared stories with me about the phenomenon referenced as "chemo brain."  Symptoms include forgetting words in the middle of a spoken or written sentence; being unusually disorganized; a short attention span; difficulty multitasking; a constant state of confusion; and, short term memory issues.  There was no question that after only two treatments, I possessed many of the classic signs of chemo brain. Well, that's just great.  Now, I have to contend with no hair and an impaired brain. 

After my futile attempts at reading the Friday morning newspaper, I decided to take a shower and dress for what I expected to be a busy day at the Arkansas Department of Parks and Tourism.  The end of the state’s fiscal year was quickly approaching and with it comes a multitude of accounting and year-end purchasing tasks.  I could only hope that my brain was up for the challenge.

Typically, my day begins about 7:30 a.m., when I occupy my office, turn on the computer and prepare for an onslaught of email messages and questions from the staff.  Before tackling my responsibilities, I unlocked the door to the staff break room and decided to microwave a Jimmy Dean breakfast - turkey sausage and egg on English muffin -  to lessen the potential hypoglycemic effects of the insulin I injected 30 minutes earlier.  I wrapped my breakfast in a paper towel and placed it in the microwave and proceeded to key in 1 minute and 30 seconds on defrost as the directions instructed. 

I was feeling rather sluggish and decided a cup of java was necessary to get me through the morning.  My friend Gloria’s office is the central location for fresh coffee.  Since she is the executive assistant to the Department’s executive director, there is always coffee available should legislators or constituents show up for a meeting with “Mr. Big” and request a little caffeine boost.

When I walked into Gloria’s office, she looked up and started a conversation about my newest wig, which was celebrating its coming out party on the first day of summer.  After a quick chat about the color and style of my synthetic locks, I filled my coffee mug and headed to the break room to retrieve my breakfast sandwich.  I knew something was amiss when I didn’t hear the microwave beeping, indicating that my Jimmy Dean muffin was defrosted and ready for a quick ride on the microwave carousel for an additional minute.  (With chemo brain, I have also noticed that “chemo mouth” comes into play, as well.)  “Oh, shit…shit, shit, shit,” I said repeatedly and loudly as I walked over to the microwave.  I could see smoke inside the oven and immediately hit the cancel button.  Not thinking (duh… I hadn’t done that clearly in almost a month!), I opened the microwave door for a split second to glance at my damaged breakfast. I immediately shut it when I saw a quick puff of sausage and egg-laced smoke billow out. And then the longest day of the year became just that….
The expansive Arkansas State Capitol grounds
It was approximately 7:50 a.m. when both the interior and exterior fire alarms positioned throughout the State Capitol Complex started sounding. In addition, emergency lights flashed like a 1980s disco bar and the most obnoxious, pre-recorded female voice in the history of pre-recorded messages repeated over and over, “An emergency has been reported, please evacuate the building” or some variation thereof.  Stunned at what was happening, I walked into the hallway and told everyone that I was the culprit.  About that time, the Department’s designated safety officer approached and I explained it was smoke from the microwave and there was no fire.  She called building security and shared my story but the spokesman said everyone still had to evacuate per policy, which was exactly what was happening.  When I looked outside our offices into the atrium of the 5-story, Multi-Agency Complex (Big MAC for short), people were spilling out of their offices to their assigned reporting stations, located at various points throughout the expansive State Capitol grounds. 

As luck would have it, Mr. Big (not quite the Sex in the City version) and I bumped into each other in the hallway just as the alarm started sounding.  I fessed up immediately and declared that I was the guilty party.  He started laughing and said, “See you at the bell,” which was the Department’s designated site, located just north of the State Capitol.

Tourism Director Joe David Rice and I, as well as a few other staff members, all exited out the front door of the building and walked towards the bell. I could hear people griping about a fire drill before the official start of the work day.  Others were thankful for the extra smoke break.  (It was difficult to hold my tongue when I heard that one.)   As the staff, Joe David and I approached our destination, it was already apparent that wig-wearing Marla had a new reputation as the state employee who single handedly shut down state government with a Jimmy Dean breakfast muffin.  As we walked towards the bell, I did what any guilt-laden person would do; I took a bow to applause and laughter.  As we joined other Department employees, I quickly defended myself by explaining that I had cancer and suffered from chemo brain and wasn’t responsible for my actions.  Everyone started laughing because Mr. Big had already bet the group I would use that exact justification.  

Almost ten minutes had passed and the pre-recorded message was still blaring over the loud speakers. People continued to pour out of buildings, including the State Capitol.  As I watched nearly 1,000 employees cover the grounds of the vast state government campus, I recited a prayer over and over to myself, “Please, Lord, don’t let Governor Beebe be among those forced to leave their offices.”  I was envisioning an early retirement.

There was something unusual about this evacuation from previous fire drills.  We had been outside for nearly 15 minutes and there had been no sign of any fire trucks.  Even Mr. Big commented about the lack of emergency vehicles. I continued to field jokes from every direction as we waited…and waited… and waited for the “all clear” sign.  Twenty minutes into this never-live-it-down fiasco, we finally heard the sound of sirens, signaling the Little Rock Fire Department was on its way.  When I saw two fire trucks, then the huge snorkel truck turn the corner, I was mortified and terribly regretful for whatever transpired between the Jimmy Dean muffin and the microwave. 

Approximately 40 minutes after the first fire alarm sounded, we were told it was safe to return to our offices. I requested that a human shield surround me as we walked back to the Big MAC building in case I was targeted by an irate state employee who wasn’t familiar with my positive, easy-going demeanor or my pre-cancer, pre-chemo common sense. My colleagues complied.

Dozens of people asked me what happened.  The only thing I could figure out was that my nimble fingers entered 11 minutes and 30 seconds on the microwave keypad, instead of 1 minute and 30 seconds.  Everything happened so fast, I wasn’t really sure about the details.

When Gloria and I re-entered the Big MAC building, there were several firemen in the hallway.  I avoided eye contact for fear they would whisk me away and make an example out of me.  We entered the front door to the Department and were overwhelmed by a putrid odor.  How could one breakfast sandwich cause such a ruckus, I wondered.

I decided to return to the scene of the incident only to find the charred remains of my breakfast exposed on the microwave table.  I said a quick prayer because it was apparent that a potential disaster was averted.  As I stared at what was left of the sandwich, my chemo-impaired brain tried to comprehend all that had happened in a mere 45 minutes. As I shoved the blackened Jimmy Dean muffin into the trash can, an Arkansas Building Authority representative walked into the break room.  He asked if I was responsible for what had happened; I admitted that I was.  He said he would remove the trash bag, which would help eliminate the foul smell in the front section of offices.  I thanked him then he told me that an incident report would have to be filed detailing the morning’s events.  I gave him my business card, which contained all the requested information. I immediately explained to him that I was undergoing chemotherapy and my decision-making skills were impaired.  I also told him if he attempted to chastise or lecture me, I could guarantee that I would burst into tears, which was true.  He said he understood and left with my business card in hand. Geez… an incident report.  Apparently, I was going to have a "record" of sorts.

A few minutes later, I passed a State Capitol police officer in the Department hallway.  I avoided eye contact as he walked past me.  He did an about face and returned to the desk of a staff member.  He asked who he should talk to about the “incident.” I saw her glance my way.  I walked up and identified myself.  He wanted me to know that a report would have to be filed. (Hearing the term “incident report” twice in less than five minutes made me wonder if a mug shot would soon follow.)  I handed him a business card. The officer went on to tell me there was actually a silver lining to the microwave debacle.  He said the fire alarm system malfunctioned and didn’t automatically dispatch the Little Rock Fire Department as programmed.  He explained that was the reason for the extended wait in the morning heat.  The State Capitol Police Department was forced to manually dispatch the fire department, which should never happen.  Officer Nice Guy indicated the faulty alarm system would be the focus of the incident report, rather than my inability to accurately punch time into a microwave keypad.  I thanked him for attempting to make my day a little brighter.  He smiled and told me not to worry about it.  Sure, I thought, no need to be stressed about the role I played in emptying state government offices for 45 minutes and becoming the butt of endless jokes every time an emergency vehicle approached the State Capitol.

When the work day finally ended and I walked to the waiting elevator, I heard a co-worker say, “Have a good weekend, Muffin.”  My punishment had begun and would undoubtedly continue for years to come.

I learned the hard way that chemo brain is real and can lead to risky behavior.  It’s a side effect of chemotherapy that can complicate the simplest tasks. From forgetting a word mid-sentence to finding it difficult to recall a colleague’s name when standing face-to-face with the person, chemo brain is ever present in those of us undergoing treatment.  We can only hope that friends, family and co-workers understand when we sometimes look at them blankly. That’s my story and I’m sticking to it.

Monday, June 17, 2013

Cancer and Chemo: No Place for Vanity

Marla Crider, Fayetteville, Arkansas, Little Rock, UAMS, breast cancer, hair loss, diabetes
The Haircut 
It was June 13, the seventeenth day after my first chemo treatment; the day I realized that Mr. Nurse Ratched was right.  The second infusion of adriamycin was going to take its toll on my once healthy, thick head of hair (Drat! I hate it when he’s right.).

As I dressed for work that morning, I realized that the term “fixin” my hair no longer meant what it did a mere 24 hours earlier.  As I moved the brush gently through my thinning locks, I hesitantly looked at what used to be my abundant mane tangled within the bristles of the brush.  My unemotional response surprised me.  I collected the wad of salt and pepper strands from the spine of the brush, walked out on my balcony and scattered the hair for the nest-making birds to find (I did that several times and felt like I had made a major contribution to Habitat for Feathered Friends).

After that eventful hair-brushing episode, I knew that a visit to my hair stylist was imminent. I asked myself: Should I get a close-cropped “do” or go ahead and shear what remained. I decided to take the recommendation of the professional with whom I had a noon appointment that day. 

When Michael, my stylist, brushed through my hair, the loose strands went flying everywhere. Even with that drama, he determined that we should cut it shorter and try to keep a little of the hair for as long as possible.  (Only Mr. Nurse Ratched and the chemo gods knew how long that might be.) I agreed. When I returned to the office, my colleagues commented that the cut was “cute” and “practical” under the circumstances.  I appreciated their verbal support, although I knew they were just being kind.

Friday night, June 14, was one of those restless occasions when the night sweats and insomnia decided to make it an all night affair.  I never fell asleep and made the decision to get out of bed about 2:45 a.m., instead of tossing and turning for two or three more hours. I made coffee and read. About 5:30 a.m., I felt that a shower might rejuvenate me. When I stepped out of the tub and looked in the mirror, while gently towel-drying my hair, there it was - bald gaps in my otherwise very short hairstyle.  There were no tears, no real emotion. Losing my hair really wasn't about vanity.  It was just further confirmation that I have cancer.  My balding head was merely the “fallout” from the treatment that will eventually cure me.

I stared in the looking glass for quite some time then shrugged my shoulders and determined that it was probably going to be a baseball cap-wearing weekend, or I might even don one of the fun and fashionable wigs that I had ordered in advance of my pending alopecia.  No doubt, it was time for me to swallow my pride and participate in a grooming decision that hundreds of thousands of women in treatment deal with every day. This just happened to be my day.

Later that morning, I packed a small bag, placed a baseball cap on my shiny head and departed for Hot Springs and some R & R at Don’s house on Lake Hamilton. It’s the place where I can exhale and nothing is expected of me. I must point out that I have never been a wearer of caps, or any hats for that matter, except on Derby Day at Oaklawn Race Track. Ironically, I always had too much hair to wear head gear appropriately. 

When I walked into Don’s house and he saw the cap, he knew. “It looks fine,” he told me.  As I removed the cap for him to get a closer view of my little, bare head, he was surprised that I had lost so much hair in a few short days.  But he hugged me and reiterated that it was just a temporary inconvenience. 

Marla Crider, Fayetteville, Arkansas, Little Rock, UAMS, breast cancer, hair loss
The "Irish Setter" look
That evening, we decided to go to dinner in downtown Hot Springs at one of our favorite restaurants.  I packed a strawberry blonde wig just in case we left the security of Don’s house. Keep in mind that I am a brunette with green eyes and have never felt compelled to experiment with hair color over the years; however, I decided that taking a fun and frivolous approach to counteracting the effects of the cancer treatment would be okay and even forgiven. Was I going to look attractive as a strawberry blonde “babe?”  Probably not, but it’s one way - my way - of coping with this crisis.

I took my time dressing for dinner and left the wig preparation and styling for last. Don was watching the U.S. Open Golf Tournament in another room and was unaware that he was about to be introduced to a new girlfriend with strawberry blonde hair. I pulled the wig on and spent several minutes brushing and spritzing it so I wouldn't resemble an aging Irish Setter.  I added big earrings and a necklace to my outfit and decided it was time for the big reveal. 

When I entered the great room, Don was cheering on Phil Mickelson as he made another birdie.  I walked into his line of sight and his expression was beyond priceless. “Wow,” he said. “I really, really like the look" (OK, one "really" was enough). Whether that was Don being his usual caring, compassionate self or if he was being honest is still the great unknown.  Regardless, he’s now aware that for the next eight months or so, he will never know which girlfriend will be at his side.  

Several times during dinner, I noticed Don staring at me. I knew it wasn't just the wig. I can only imagine how difficult it must be for a dynamic, confident man like Don to look at the woman he loves and not recognize her. Because he is a physician, the changes in my physical appearance and emotional demeanor are less of a surprise to him than to me. This adventure (and it is definitely an adventure) has proven one thing: Even though we aren't married, we understand implicitly the phrase, “in sickness and in health.”

Friday, June 14, 2013

Treatment Two - Good News and Great News!

The second chemotherapy treatment was scheduled on June 11.  It was also the day I would receive the long awaited results from the PET and brain scans.

I learned quickly that the first order of business on treatment day is to report for blood work in the UAMS Winthrop Paul Rockefeller Cancer Institute infusion center.  The blood is quickly processed with the results forwarded to Dr. Makhoul in time for my scheduled appointment with him.

Marla Crider, Little Rock, Arkansas, breast cancer, patient stories, Clinton
Marla Crider, chemo treatment #2
After I signed in at the infusion center, Don and I waited a little longer than usual.  The waiting area was overflowing with patients waiting for blood draws, as well as their chemo treatments  I observed a young, Hispanic girl sitting in the corner of the room in a recliner.  A wheelchair was located directly in front of her.  Her mother was seated on one side of her and a male companion on the other side.  She was eating French fries very slowly and drinking a milk shake.  I noticed that her cheeks were very swollen, probably from the steroids given to prevent nausea and vomiting.  Within a few minutes, a tech called the young lady’s name.  I noticed that the male accompanying her had gently removed the food from her hands, then slowly lifted her under her arms and moved the patient into the wheelchair.  It was only then that I noticed she had a major scar on her skull, which explained her inability to walk.  When I watched the male attendant wheel her into the infusion room for her umpteenth chemo treatment, I told myself that my problems were minimal compared to what this young lady was facing.  I said a prayer for my waiting room acquaintance that happens to share a cancer diagnosis with me.  You see, we are all family, even if we have never met.

A few minutes later, I heard someone announce “Marla Fay Crider” from the infusion room door.  My mind immediately retreated to my childhood years, when my mother, Happy, would call out my full name because of something I probably shouldn't have done or when she was trying to find me at a neighbor’s house.  Even today, few people call me by my full name - mostly childhood friends.  So, when I turned around, I was halfway expecting to see one of those childhood friends in the doorway.  But, no, it was Mr. Nurse Ratched.  Immediately, I thought, “Why me, Lord?”

I met my nemesis at the door, where he immediately began barking orders at me. He reminded me that the first order of business on my return visits every two weeks is to step on the scales and get weighed.  I complied.  He marked on my chart that I had lost four pounds then wanted to know why I had lost weight.  Nausea? Vomiting?  No. No.  I explained that my roller-coaster blood sugars contributed to the loss of weight. That generated a “humph” from Mr. Nurse Ratched. As we were walking to my assigned recliner for the blood work, he asked, “Is that your hair I still see on your head?” I didn’t miss a beat and replied, “Interesting that you noticed.  I would like to remind you that this is day 15 after the first chemo treatment and I still have my hair.” He asked, “Is it thinning?” Darn it, I was going to have to fess up that it was – by the handfuls.  Being the curmudgeon that he is, he gloated and said, “I bet the second treatment gets it all.” (I could almost hear him laughing like the Joker in a Batman movie.)

I settled into my assigned recliner and Mr. Nurse Ratched starting pulling tubes and butterfly needles from the cabinet drawers beside me .  He asked me to expose my port.  Damn!  I thought they would take it from my arm, like the last time. He could see the anxiety in my face.  “You didn’t put the numbing cream on the port site, did you?” I shook my head no.  “I bet you don’t forget to do it the next time after I stick you this week,” he said.  And, before I had time to catch my breath, Mr. Nurse Ratched forced the rather large needle into my port.  It was extremely uncomfortable. The old fart said, “Hurt didn’t it.”  Hell, yes, it hurt and was still hurting.  He drew the amount of blood he wanted and attached tubes to the port for the infusion of chemo a few hours later.  “See?  We won’t have to re-stick you later.”  Did he really think that little tidbit of conversation was going to make up for him bringing me to my knees in pain only seconds earlier?  He told me I was all done and he would see me later.  I wonder if he could see the look of dread on face.  Must have.  He was smiling at me.  If this was his way of flirting with me, I felt like turning him into the police or the equivalent thereof.

After making it out of the infusion room without kneeing my cocky, male RN in the testicles, Don and I were now ready for the appointment with Dr. Makhoul.  We were actually about 15 minutes early when I signed in with the receptionist.  About 40 minutes had passed when I finally heard my last name – Crider - called out. (Take note, Mr. Nurse Ratched.)

We were escorted to one of the cubicles marked with “Dr. Makhoul” on a nameplate. The usual routine is that Brenda, Dr. Makhoul’s handy-dandy RN, will come in first and ask questions pertaining to side effects and any other “oddities” after the first chemo treatment.  Brenda has a very engaging personality and quickly puts her patients at ease.  She started pelting me with questions:  Any nausea or vomiting? No. Night sweats?  Hell, yes. Insomnia? Absolutely! Hair loss?  We’re still debating that one.  She filled in all the responses on the computer that Dr. Makhoul would be accessing later.  Before leaving the room, Brenda asked me to take off my top and put on a gown.  Dr. Makhoul would want to examine me.  I asked if he had an intern with him.  She said she hadn’t seen one during the morning rotations, but he might have one for the afternoon appointments.  I put in a special request for a male intern, since the ta-tas would be examined.  I just hate wasting that experience on a female intern. That comment did generate an eye roll from Don and an outburst of laughter from Brenda. I disrobed and waited.

Dr. Makhoul made a quick entry into my cubicle and with a male intern, I might add.  I love UAMS.  Ask, and you shall receive.  He immediately went to the computer and started reviewing my online file. Hmmmmm, he said.  No serious side effects.  He said the precedent had been set and I would probably be free of nausea and vomiting for the duration of my chemotherapy.  I clapped like a little girl.  (The anti-nausea regimen of meds really does the trick, at least for me.)  He basically told me I would have to endure the night sweats and insomnia.  I’ll take that over nausea any day of the week!

Next, Dr. Makhoul started pulling up the test results.  First, the brain scan.  “You have one and it looks just like cauliflower on the image and it’s cancer free," he laughed.  I clapped like a little girl, again.

I couldn’t contain my eagerness to know about the PET scan and asked about it next.  He reiterated that the right breast was glowing brightly, which we expected from his general review two weeks earlier.  The spot in the colon turned out to be a misalignment on the scan. He was convinced it was a false reading.  Yippee!!!  More hand-clapping from me.  Dr. Makhoul did say there was some inflammation in a lymph node under the right arm pit.  Don quickly jumped in with his medical demeanor and asked if the inflammation could have been from the lymph node needle biopsy I received just days prior to the PET scan.  “Very well could be,” he said.

Then, Dr. Makhoul and the scruffy-bearded male intern, who looked a little like Doogie Howser, M.D., examined me.  He checked the lymph nodes in my neck and listened to my heart.  He then pulled the measuring device for sizing the tumor out of his pocket.  Dr. Mak measured the tumor vertically then looked up at me with surprise. He looked back down at the device and said, “I believe it’s shrunk one whole centimeter.”  He marveled that it was incredible results after only one treatment.  He gauged the size of the tumor as 4.6 centimeters (down from 5.6) by 4.2 centimeters (reduced from 5.2 centimeters).  There was lots of hand-clapping on my part at that revelation and even a verbal “Yippee.”  Dr. Mak stated that if we continued to see these kinds of results every two weeks, the tumor would basically be gone at the end of the eighth and final treatment, which is exactly what the breast surgeon, Dr. Suzanne Klimberg, had hoped.  The masterful Dr. Makhoul did caution me that we shouldn’t get the cart before the horse because cancer does its own “thing.”  He said it may get to the fourth or fifth treatment and refuse to shrink any further.  He just wanted to prepare me for that possibility.  Dr. Makhoul provided me with some great news and I wasn’t going to let that one comment deter me from my “afterglow.”

Marla Crider and Dr. Don Vowell
There was one last pressing question that Don wanted to ask Dr. Mak pertaining to the markers in the tumor, meaning what, if any, receptors attached themselves to the breast tumor when the original needle biopsy was performed.  For example, if estrogen was a receptor, I would be treated with Tamoxifin for several years to ward off a recurrence of breast cancer in the left breast or from cancer metastasizing in another part of my body. Unfortunately, my breast tumor was negative to any receptors.  However, Dr. Mak offered a ray of hope.  He said that I might be a good candidate for a breast cancer vaccine that UAMS is close to putting into the trial stage.  Sign me up!

Dr. Mak asked me one last question before he left.  He wanted to know how the fatigue was affecting me.  I explained that the fatigue I was currently experiencing was insomnia driven.  He warned me that after the second treatment and, especially after the third, I would really begin to feel the effects and not to fight it.  He encouraged me to leave work when I felt like the proverbial “brick wall” was approaching.  I assured him that I would. 

Don and I reported to the infusion center again and prepared for treatment two.  My name was called quickly by a tech and she escorted us to a recliner in the front section.  I scoped the place and didn’t see any signs of Mr. Nurse Ratched.  Suddenly, sweet and lovely RN greeted me and I exhaled with relief that she would be the one administering the toxin.  I settled into my chair and she quickly gave me the anti-nausea pills (bless their little hearts) and hooked me up to the red poison, Adriamycin, otherwise known as the hair-follicle-killer. It took about 15-20 minutes for the concoction to drip into my veins and do its magic of killing the cancer.  Following the Adriamycin, I was given cytoxin, which took about 35-40 minutes to dispense. After she flushed my aching port, sweet and lovely RN gently (did you hear that Mr. Nurse Ratched? Gently.) removed the needle and sent Don and me on our way.

I arrived home where my wonderful brother, Mike, and sister-in-law, Barb, had spent the day cleaning my condo, not because it needed it (they said), but as a gesture of making me feel more comfortable when I returned from treatment number two.  I am blessed to have such a loving and supportive family as I continue through this journey.  Truly blessed.  And, based on the great news I received from Dr. Makhoul regarding the reduced tumor size, their prayers and those from other friends and acquaintances have made the difference in my status. I am grateful. Very, very grateful. 

My office gal pal, Gloria, drove me to UAMS the following day, June 12, to receive the dreaded Neulasta shot for stimulating the bone marrow to make an over abundance of white cells.  Dr. Makhoul told me if I had side effects from the first shot on day seven the last time to count on that being the routine.  He mentioned in our appointment that the cancer team likes to keep the white cell count at about 15,000 and gave me a pat on the back because my white blood count was at 17,000.  A new RN appeared at my chair to administer the shot.  She was pleasant but unfamiliar with my chart.  It took her a few minutes to get up to speed. While waiting for the shot, Gloria got a glimpse of Mr. Nurse Ratched and is in agreement with me regarding his crotchety ways.  I’m going to “break” him before this journey is over.  I’m determined. And, I'm going to kick cancer's butt while I'm at it.

Thursday, June 6, 2013

Chemo: Beware the Trojan Horse

Following is a day-by-day account of Marla Crider's post-chemo reactions and side effects.  The first treatment was May 28 and the days following were a true learning experience.

May 29I slept well after my first chemo treatment and had no nausea or vomiting.  I contributed that to taking the anti-nausea drugs as prescribed.  When I awakened at 5:30 a.m., my brother, Mike, and Don were up and anxious to see how I fared through the night..  We were all pleasantly surprised at my announcement of “fine.” I was more concerned that my 23 year-old feline companion, Fluffy Sue, was not on my bed as usual.  Instead, I found her sitting quietly on her favorite chair in the living room, where she had been most of the night. Still unstable after her near-death experience two days earlier, I offered her food that she would only eat from my hand.  She drank a little water then just kept staring at me.  She seemed to be searching my face for some sign that I was feeling okay.  I petted and reassured her then she returned to her chair in the living room.

marla crider,, breast cancer, patient stories, chemo
Beware the chemo induced insomnia and fatigue.
At 10 a.m., I reported to the UAMS infusion center for the Neulasta shot prescribed to stimulate the bone marrow and make additional white blood cells for fighting off potential infections.  When the nurse’s assistant called me back to the infusion room, I could only wonder which nurse would inject me – the lovely and sweet RN, who introduced me to the port numbing cream, or Mr. Nurse Ratched, my hair loss antagonist. It was the lovely RN, who greeted me at my assigned recliner.  She already had the needle and vial in hand and was ready to give me the injection – in the stomach.  Some might be frightened at this prospect; however, I give myself insulin shots in the belly each morning, so this was no big deal. She quickly gave me the injection and reminded me that I could experience pain in the leg bones, spine and pelvis area.  Okay, I thought to myself, I get the message; pain may pay me a visit.

Before leaving UAMS, I took the prescription that Dr. Makhoul had written for a “cranial prosthesis” and visited the wig shop, where I would receive one free wig.  Not about to give in to Mr. Nurse Ratched’s prediction that my hair would fall out on the 13th day after the first treatment, I still wanted to be prepared should it actually happen.  The volunteers in the shop were terrific.  They worked with me for nearly an hour.  We decided on a short-styled wig in a color similar to my dark brown and silver locks, but it would have to be ordered.  I was in a race for time with the wig manufacturer. 

Don and I returned home.  I decided not to report to work the first day after chemo just to make sure that I was in the comfort of my home, rather than the office, should side effects strike. As the day progressed, I continued to be elated that I had not experienced any signs of nausea or pain from the Neulasta injection.  So far, so good. 

I tried to rest during the day but wasn’t really tired or sleepy.  I was told to check my blood sugar often, since some of the anti-nausea medications were steroid-based and could have dire affects on an insulin dependent diabetic.  I was stunned my blood sugar levels were in the high 200s and that was after taking my usual units that morning along with the oral meds.  This wasn’t good.  I had three days of steroid meds to take and this was going to be an issue.  I contacted my primary care physician and he instructed me to increase the oral meds and leave the insulin units the same.  Okay, he’s the doctor.   

As I lounged on the couch like a slug, Fluffy jumped on me and curled up on my chest.  She was comforting me, which was so like her. She purred occasionally but there was no question that my girl was in distress.  Don could see my concern and, without me uttering a word, he said, “Renal failure doesn’t cause pain, just organ failure.”  There he goes again, telling me all the things I really didn’t want to hear but knew were necessary. 

Throughout the day, I continued to take the anti-nausea meds as prescribed and was still feeling fine.  I made plans to go to the office the next day.

May 30 – Another nausea-free night made me giddy and ready for a day at the office.  I checked my fasting blood sugar when I woke up and it was nearly 300 (normal is 80-120).  I had eaten very little the night before only because I wasn’t hungry.  This was extremely frustrating for someone who managed her diabetes very well in the past.  I consumed some scrambled eggs just to keep my strength up and prepared to increase my insulin units to counteract the impact of the steroids on my blood sugar.  My remedy, not my primary care physician. Don was concerned, as well, but reminded me that this was one of the side effects I was told to expect.  It seemed that my issues were going to be different than non-diabetic cancer patients in chemotherapy. Typical me… I always had to be different.

While dressing for work, I checked on Fluffy in her favorite chair.  She blankly stared at me.  My heart was in my throat as I called Dr. Marvin and told him I was going to bring my girl in later that afternoon and put her down.  I haven’t cried that hard in a long, long time. 

The only unusual feeling I had while at work was several hot flashes.  Even though I immediately stopped taking the hormone replacement pills three weeks earlier when I was told I might have cancer, I had been spared the much maligned hot flashes experienced by my gal pals.  These hot flashes seemed to be different and I could only assume they were related to the chemotherapy. 

I left the office that afternoon about 3:30 and drove slowly to my condo, dreading what I was about to do. When I arrived and pulled the cat carrier from the closet, Fluffy didn’t run from me as usual, she just stayed in her favorite chair.  I picked her up, placed her in the carrier without a fight and drove the one mile to Dr. Marvin’s office.  The staff was quiet when I walked in with Fluffy and told me a room was ready for us. I took Fluffy from the carrier and placed her on the exam table, where a soft towel had been placed for her comfort.  Dr. Marvin walked in and reassured me that I was doing the right thing for Fluffy.  (But what about me?   Now, more than ever I needed Fluffy’s comforting nuzzles and therapeutic purring next to me.  What about me?)  He told me to take as long I needed to say good-bye and let him know when it was time.  I stroked Fluffy as I explained to her that I could no longer keep her with me just because of my selfishness. I needed to release her from her age-induced, physical burdens.  I tapped on the door and Dr. Marvin came in with a vet tech.  I continued to stroke Fluffy as the tech stretched her out on her side. Dr. Marvin found a vein on her left back leg and injected her.  I would rather have taken a bullet to the heart.  It only took a few seconds for Dr. Marvin to pronounce her “gone.” Again, he left me alone with my girl, my companion, my best friend for nearly two decades.  He returned a few minutes later, wrapped Fluffy in the towel and said her ashes would be returned to me in about a week.  I thanked Dr. Marvin for his compassion, gathered up the cat carrier and got the hell out of there.

When I turned into my condo complex, I stopped and tossed the cat carrier in the dumpster and made another trip with Fluffy’s litter box and all other reminders of her.

I found it difficult to sleep that night.  While I thought the insomnia was due to not having Fluffy nearby, it was evident that the harsh night sweats were a contributing factor.  Besides the elevated blood sugar, my post-treatment side effects were insomnia and night sweats.  How lovely.  I mean we’re not talking about a little perspiration; I was sweating like a sow. The sheets were drenched and no matter how much air was blowing on me, I couldn't get comfortable and fall asleep. It was a long night for several reasons.

May 31 – How strange.  It was 5:00 a.m. and there was no furry feline demanding to be fed.  I got up and checked my blood sugar – 159.  Much better.  I dressed for work and made sure my attire included a light sweater that could be tossed aside when the hot flashes hit – and they did, at least a dozen times during the day.

That night, insomnia was back on the menu, along with the night sweats.  Two nights and no sleep.  How long would I be able to endure these sleepless nights, I wondered?  I compared this part of the cancer treatment to that of the mythology about the Greeks and the Trojan horse.  The chemo played the role of the Greeks, running through my veins declaring war on the cancer.  Thinking I was home free after three days of no nausea or vomiting, I accepted the chemo as my friend and cancer-killing colleague.  Just as I let my guard down, the chemo (Greeks) outsmarted me and unleashed havoc on my ability to sleep and my sweat glands.  Perhaps this analogy was created purely from sleep deprivation, but it sure made sense at the time.

June 1-2 (weekend) – More sleepless nights and drenched bed sheets.  I ran a few errands, composed my blog, listened to music, and did online research about chemo side effects.  What I was experiencing wasn't unusual, just very frustrating.  In communicating with friends who recently completed chemotherapy, they confirmed that fatigue from not being able to sleep and night sweats were pretty typical.  Okay then,  I can do this.   I did manage a short nap on Sunday afternoon, which temporarily eliminated the extreme fatigue.  Now, I was just ordinarily fatigued.

Over the weekend, my blood sugar returned to normal, at least for the time being. I continued to eat light meals comprised of protein, fresh fruits and vegetables, which seemed to help stabilize my system.

June 3 - I reported to the office and managed to accomplish a great deal on pure adrenalin.  My body was exhausted  from lack of quality sleep and my sweat glands were still working overtime. Linda, one of my “go to” office cohorts, borrowed a spare fan from one of the girls in the office, who was dealing with menopausal symptoms of her own and hooked it up, which helped me tolerate the chemo-induced hot flashes that were coming even more frequently.  Work and my office friends were keeping me focused on things other than my sweaty body and zombie-like mannerisms.

That night was no different than the previous five – insomnia, night sweats, and mindless television options. I could hardly wait for the sun to rise.

June 4 – I awoke and checked my blood sugar and was stunned that it was in the upper 200s again.  Crap!  I hadn’t done anything any differently. These yo-yo blood sugar readings were something I was going to have to contend with for the duration of my chemo treatments, so I might as well get used to it.

Don arrived for date night that  afternoon instead of our usual Wednesday outing because I was scheduled for a brain scan the following morning (June 5).  A brain scan: we were lucky to find a heart when the MUGA scan was conducted. Now, the poor radiology techs were going to have to find a brain, as well.  I wondered if the test would indicate that the patient had experienced six sleepless nights and was recreating Greek mythology stories in her head?

After dinner, Don and I returned home, where I proceeded to immediately plop on the sofa.  The fatigue was beyond anything I had experienced to date. I told Don if I was lucky enough to doze off, just to leave me, which is exactly what happened.  I actually slept for about four hours, even though the night sweats were still prevalent. It was about dang time that slumber made a return visit.

June 5 (brain scan day) – Instead of feeling refreshed when I awoke at 5:00 a.m. I felt more like I had the flu.  There was no nausea, but I felt achy and the fatigue was worse than ever.  I managed to shower and dress for the trip to UAMS and the brain scan. Don and I arrived at 8 a.m. and made our way to the MRI section of the WRP Cancer Institute. My size 8 rear-end was dragging and all I wanted to do was get through the brain scan and return home to my bed.

The radiology tech called my name and escorted me to the area where he would search for a vein to inject the contrast dye. He decided on a vein in my left hand, where he inserted the port.  From there, we went to the MRI room.  I laid down on the gurney, where the techs placed a cushion under my knees and a cage around my head.  I was given ear plugs just before the gurney moved slowly into the narrow tube.  In seconds, the noise began and I dozed off – a true sign that I wasn’t feeling well.  About 20 minutes later, the noise stopped and the gurney moved out from under the tunnel, where the tech was waiting with the contrast dye that would be injected into the hand port.  Back into the tunnel I went; this time for a mere 10 minutes. At the conclusion of the brain scan, the tech returned to remove the port, then I was outta there. 

During the ride home, I had a sudden sharp pain in my lower back that took my breath, followed by another.  What on earth, now? I felt like crap and, now, severe back pain.  Really?   Being a retired orthopedic surgeon, Don recognized that the pain was probably from the Neulasta injection I received exactly one week before.  Talk about delayed reaction!  Then, I recalled the warnings from both Dr. Makhoul and the lovely RN who injected me with the culprit.  That’s exactly what I was experiencing – pain associated with my bone marrow being in overdrive, making an abundance of white blood cells…just in case.

I retreated to the sofa after taking one of the pain pills prescribed a week earlier should the Neulasta kick-in and, boy, did it.  I slept for about two hours and as long as I was horizontal, the pain was manageable. Hopefully, this will be a fleeting side effect and I can return to work on Thursday. In the meantime, I now understand why my cancer team has been so generous with the prescriptions.  A martyr, I’m not.  Give me the drugs.

Sunday, June 2, 2013

Treatment Day and Mr. Nurse Ratched

Finally, the day had arrived for “the plan” to be implemented.  For the past 28 days, I had been on a roller-coaster ride that has, at times, been difficult to describe. From the initial diagnosis on May 1 to this day, I had become mentally and emotionally exhausted, yet prepared for the treatment and whatever might come with it.
Adriamycin can be used to treat
early stage or node-positive breast
cancer, HER-2 positive breast
cancer, and metastaic disease.
Adriamycin is sometimes combined
with cytoxan and/or fluorouracil to
make a cocktail of breast cancer
fighting chemotherapy drugs.

Rather than wasting time at home that morning watching the clock tick towards my noon appointment and obsessing about how much time I might have left with Miss Fluffy, I made the decision to go to work.  It was normalcy and my usual routine that I needed and the Department of Parks and Tourism was where I would find it.  After pushing papers all morning and accomplishing more than I thought I could or would, it was finally time for me to depart for UAMS.  As I walked out the door, I could hear sentiments of “good luck” being expressed by my colleagues. It was a comforting way to start the process.

My appointment with Dr. Makhoul was scheduled for 1:00 p.m., when he would provide the results of the PET scan, check my vitals and write the prescription for the chemical concoction that was going to put me on the road to recovery.  Prior to meeting with the doctor, I was instructed to report to the Infusion Center on the first floor of the WPR Cancer Institute at noon for a blood draw to establish a baseline.

When I arrived, I was escorted to a recliner, where I observed several people receiving intravenous chemotherapy. Some were asleep; some were wrapped in blankets and others were watching the new girl who just walked in – me.  A lovely and friendly RN quickly came to the chair and told me she would be drawing blood for a couple of tests that Dr. Mak had ordered. She wanted to know if I had a port and I proudly showed her my battered collarbone area, where Dr. McDreamy and Nurse Vin Diesel had their way with me days earlier.  She noted that the port still looked a little tender and a numbing cream containing Lidocaine might be in order.  She explained that it would lessen the stick and pressure of the infusion needle and made arrangements for me to pick up a prescription at the outpatient pharmacy, located next door. In the meantime, I watched her thump the veins on both arms trying to find one that could withstand yet another blood draw.  I told her that a vein finder might be in order.  She didn’t miss a beat and told me she would take the blood from a vein on the side of my wrist.  I never felt the sting of the needle.  This girl knew what she was doing. 

After the blood draw, I reported back upstairs to Dr. Makhoul’s office, where Brenda, his seasoned and knowledgeable nurse (and my new best friend), began reviewing a lot of details with Don and me about what I/we might expect after my first chemo treatment.  Then, Dr. Makhoul arrived with a female intern (darn it) and began going over my test results from the previous week. 

He reported that the heart scan was normal. For a person with my family history of diabetes and heart issues, the news was good – really good.  When Dr. Mak tried to pull up the PET scan report, it had not been posted to my online record yet.  After waiting over the long, holiday weekend to learn if the cancer was in the right breast only, I was deflated and disappointed that I was still not going to know anything for sure.  Seeing the frustration on my face, Dr. Makhoul told me the lack of PET scan results wouldn’t change his treatment plan, but I could tell Dr Mak was curious about the results, as well. He retreated to a different computer and pulled up the raw scan; he returned with a semi-good report. 

He said the right breast was glowing brightly on the scan, which we expected.  Of concern was an area in my colon that looked inflamed, even suspicious. That was certainly not what I expected to hear.  Determined that the cancer cells were NOT going to meander their way to other parts of my body, I reminded Dr. Makhoul that I had been diagnosed years earlier with irritable bowel syndrome (IBS), an annoying affliction that flares up when I’m stressed or emotionally upset. Duh!!!  Needless to say, I had experienced a reoccurrence beginning the day I heard the “C” word.  I shared my medical assumption with Dr. Mak, but he wouldn’t confirm that my explanation was what he was seeing on the PET scan.  We were going to have to wait for the final scan diagnosis but, until then, would continue with the chemo treatment as originally planned.

Dr. Makhoul advised me that when I reported for treatment in the Infusion Center in less than an hour, I would be given oral, anti-nausea medications before and immediately after the infusion and would take additional meds home with me.  With most of my questions answered, I took the apprehensive walk back downstairs accompanied by my loving entourage comprised of Don, Brother Mike and sister-in-law, Barbara.  We were three hours into my first treatment experience and they were determined to stay with me for the duration. 

Before arriving at the Infusion Center, I stopped by the outpatient pharmacy, picked up the numbing cream and quickly applied it to my blue and yellow port site in anticipation of what was to come.  I signed in at the reception desk and waited for my name to be called.  Even at 3:00 in the afternoon, the waiting room was full of cancer patients and their families.  Some were older and in wheelchairs, and sadly, others were much younger than me. 

A tech called my name and escorted Don and me to a recliner in the infusion room, where I was greeted by Mr. Nurse Ratched. Uh-oh, I thought, where was my lovely, sweet RN from earlier this afternoon?  My version of the fictional character from the movie, “One Flew Over the Cuckoo’s Nest,” was dressed in blue scrubs, appeared to be my age and had “don’t mess with me” written all over his face.  He immediately started spewing information at me and plying me with anti-nausea pills.  He was talking way too fast for me to comprehend what he was saying   Even Don was struggling to keep up.  Mr. Nurse Ratched showed me two bags of liquid “cure.”  The first one destined for my vein was smaller and filled with a red concoction. “This one,” he said, “is the one that may cause hair loss.”   (Well, you old fart, aren’t you just a bundle of joy?)

Hair loss was something that had been discussed with Dr. Mak.  He said almost like clock work, the hair falls out on day 13 after the first treatment, but not everyone responds the same.  As a woman who has always taken pride in her thick, full-bodied mane, I wasn’t sure how I was going to emotionally respond to this particular side effect of the chemo.  I decided to argue with Mr. Nurse Ratched.  I reminded him that 10% of people don’t lose their hair per Dr. Makhoul.  “Uh-huh,” he said, as he pressed the infusion needle into my numb port site.  “Maybe you will be one of the lucky ones.”  Don sat next to me and listened patiently to my mindless banter with Mr. Nurse Ratched. It helped calm my nerves as I watched the red, hair-follicle-killer – adriamycin cytoxin - make its way into my body.

About that time, an attractive black woman walked in with her mate and sat in the recliner across from me.  I could tell this wasn’t her first rodeo.  She settled into the recliner, covered up with a blanket and waited for the nurse to hook her up to the meds.  Noticing her thick hair, I decided to ask her how many treatments she had received.  She held up five fingers.  “But you still have your hair,” I marveled.  She told me it had thinned but was still intact.  When Mr. Nurse Ratched stopped by to change out the empty, red chemo bag for the bigger, clear one, I pointed at the black lady across from me and told him she hadn’t lost her hair.  He just smiled. This had become a game between Mr. Nurse Ratched and me.  We had finally bonded. 

When the last chemo bag was empty, my nurse removed the infusion needle, loaded me down with four bottles of pills and told me to report back the following day for a Neulasta injection.  The purpose of the shot was to stimulate the bone marrow to make additional white blood cells and help fight potential infections. Mr. Nurse Ratched warned me that the side effects could cause pain in the leg bones, spine, and pelvis area.  He said a prescription for pain was waiting for me at the outpatient pharmacy.  As I gathered my bag full of reading materials and medications, Mr. Nurse Ratched patted me on the back and reassured me that I was going to be fine…with or without hair.  
When we arrived home, Don and Mike asked how I was feeling.  Other than being mentally and physically exhausted from a full afternoon of medical procedures, I was feeling surprisingly good.  I took another dose of the anti-nausea pills encouraged by Dr. Mak.  He cautioned me not to be a martyr and try to handle the chemo treatments without the aid of the various meds he had prescribed, which is good advice for anyone going through chemo. 

It had been a long day, but I finally had the first treatment behind me.  Now, all I/we could do was wait and see how my body was going to react to the chemo.  I was ready for sleep and whatever the late night hours or tomorrow might bring.

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Saturday, June 1, 2013

Family, Fluffy and Focus

breast cancer, patient stories, UAMS, Little Rock, invasive ductal carcinoma, Marla Crider
In between the PET scan on Friday, May 24, and my first scheduled chemo treatment on May 28, was a long, holiday weekend filled with apprehension, anxiety, and other distinctive emotions.  To further murky the waters, my beloved 22-year-old cat, Fluffy, wasn't her usual, active self.  She had been losing weight, throwing up, and frequently peeing. Don and I decided a visit to the vet was in order.

We loaded Fluffy up in the cat carrier that she loathes and traveled the one mile to the Bellevue Animal Hospital in midtown Little Rock. Dr. Marvin, who may be one of the most compassionate vets I have ever encountered, examined Fluffy Sue (a southern feline befitting a double name), and said she needed to be hydrated intravenously and kept overnight.  He explained that Fluffy was going into renal failure, common for cats her age. Well, isn’t that just dandy… from PET scan to pet emergency. Does anyone else see the irony here? We left her in the caring hands of Dr. Marvin.  I could feel my stress level accelerating.

During the weekend, I kept busy running errands, stocking my refrigerator with healthy edibles, and shopping for a few loose-fitting, “chemo” clothes. For those who know me, clothes are my vice (or one of them) and something I never really “need,” however, passing time at a meaningless task like shopping was therapeutic and helped pass the hours before T-day (treatment day).

After darting here and there, it was time for me to pick up Miss Fluffy from her overnight stay at the pet hospital. The clinic staff said she did well and had really perked up.  She looked thin but let me know in no uncertain terms that she didn't want a repeat experience at the vet clinic.  When I let her out of the cat carrier at my condo, she made a beeline for her food dish – a very good sign.

It didn't surprise me much when my older brother, Mike, phoned later that day and said he and my sister-in-law, Barb, wanted to be with me for the first treatment.  He has always been the “processor” in the family; the one who might take several days to make a decision, but it was usually the right one.  He needed to see first-hand how his baby sister was going to endure the chemotherapy.  I was actually thankful for his phone call and anxious for their visit.  While Don has been my shoulder to lean on, as well as my confidant and the love of my life, my siblings and other immediate family members are the glue that keeps all the moving parts of this challenge in check. We agreed that they would meet Don and me at my condo Tuesday morning shortly before I had to report to UAMS for my oncology appointment with Dr. Makhoul and the anticipated chemo treatment. 

More busy-work and a few social outings occupied my time (and mind) on Sunday. Don and I enjoyed brunch and a movie, Mud, starring Matthew McConaughey.  The movie was filmed in southeast Arkansas and was on my “must see” list.  It was a good movie and one in which McConaughey should probably receive peer recognition during the awards season.  (What’s a proud Arkansan supposed to say about a movie shot on location in her native state that stars a Hollywood hunk?) 

When Don and I arrived home after the movie, I was anxious to see how Miss Fluffy was fairing.  I was stunned that she had been throwing up all afternoon and was very weak.  I felt guilty that I wasn't in the house when she became so ill.  Like any mother of a sick child, I cleaned up the vomit and cried while doing it. My baby girl was really ailing and I was going to have to deal with the inevitable.  I managed to get her to drink water and even hand fed her a little food.  Eventually, the vomiting stopped.

Dr. Marvin had graciously provided his cell number to text him if something happened with Fluffy over the weekend.  I did just that – texted him.  He said if the vomiting had stopped, just to keep her hydrated. Bless her little heart; she retreated to her “hidey-hole” in my clothes closet, where she stayed for the rest of the day.  

Early Monday morning, Memorial Day, I was awakened to a slight purr and a fuzzy nuzzling at my neck.  My girl had made her way out of the closet and onto my bed.  I turned on the bedside light and we talked.  I asked her if she was hungry and she tried to respond but couldn't hold her head up.  I panicked and immediately called Don, who was at home in Hot Springs for a little reprieve from his “patient.”  He quickly became the medical professional and explained that she was failing and I needed to think about what was best for her.  Damn him!  That’s not what I wanted to hear.  Yet, I knew he loved Fluffy, too, and could see and articulate what I refused to accept.  But, I wasn't giving up.

I placed Fluffy on the floor since she didn't have the energy to get down by herself and she wobbled her way to the kitchen with me.  I provided her with fresh water and decided that she could have whatever she wanted to eat, (if she could or would eat), and none of that boring, tasteless prescription cat food, either.  I went for the good stuff in my pantry– Starkist tuna.  I opened the can and put a small spoonful in her cat dish and preceded to hand feed her.  She responded and ate the entire dollop, then drank lots of water.  She retreated to the closet, where she stayed most of the morning.  Early afternoon, she slowly made her way out of her protected place to eat a little more, drink water and, this time, to watch the birds from the open, sliding-glass door.  It was apparent that I could learn something from my 22-year-old friend and companion and that was to never give up.   

Fluffy continued to rally and slept next to me, purring throughout the night and until the sun peeked over the horizon of treatment day, May 28. 

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