Monday, June 23, 2014

Houston: We Have a Problem

When Dr. Makhoul informed me nearly two months ago that the triple negative breast cancer had metastasized to my lungs, liver and pelvis, we made a joint decision to try a powerful oral chemo – Xeloda (zeloda) -  as well as a bone enhancer/strengthener called Zomata that is to be given intravenously once a month.

Breast cancer, advice, patient's blog, patient perspective, help for breast cancer patients
M.D. Anderson Cancer Institute - Houston, TX
I was instructed to take 1,500 milligrams of the Xeloda in the morning and evening for two weeks with one week off the drug.  After week one, the “hand and foot” syndrome that Dr. Makhoul warned me about had made itself known. Occasionally, the bottoms of my feet would be so tender that it was a challenge to walk. I learned quickly that washing my hands in hot water was a no-no and showering in hot water wasn’t tolerable, either.  Tepid temperatures were the new norm in my life.

During the week off the oral chemo, I could almost hear my body take a deep sigh of relief.  My hands and feet returned to their usual flesh tone and my digestive system was craving Mexican food. I now understood why the doctors allowed a one-week vacation from the Xeloda.  I had earned the time off.

The second, two-week cycle of the drug started off uneventful; however, at the end of the first week, the hand and foot syndrome returned with a vengeance and my diet no longer included spicy food.  New to the side effect menu was a generous helping of fatigue.  My body and brain were exhausted by the end of each work day.  It was a challenge when I got home to prepare something to eat or even muster an appetite.

By the end of the cycle, my hands and feet were extremely sensitive and tingled night and day.  Diarrhea continued to be my nemesis and the fatigue was ever present.  I was anxious to see Dr. Makhoul for my one-month, follow-up appointment that coincided with the end of the second, two-week cycle and hear what he had to say about the side effects. 

My appointment was on May 16.  Don and I arrived at UAMS for the required blood work at 11:00 a.m.  We were to see Dr. Makhoul at 12:00 p.m.  From a year’s worth of experience, we knew we were in for a one to two-hour wait.  It was 2:40 p.m. when we finally saw the smiling face of the good doctor.  He apologized, which was unnecessary.  When you have cancer, you learn patience.  And, if you expect the best doctors to treat you, it is a given that they constantly run behind schedule because they are providing others with the same detailed and compassionate care that you are privileged to have.

Dr. Makhoul reviewed the list of my side effects and explained that I would probably have to start wearing socks and tennis shoes when my feet were inflamed.  Being the fashion diva that I am, I laughed out loud at the thought of me wearing the likes of socks and tennis shoes to work.  I would figure out another solution – a stylish solution - to aid my pitiful feet. 

During our conversation, Dr. Mak informed me that he was scheduling a new PET scan for May 30 to see how the Xeloda was impacting the cancer.  The results would be shared with me on June 2 but not by Dr. Makhoul.  He was scheduled to be out of town.  His nurse practitioner would deliver the results to me after he reviewed the scans and read the radiologists comparison report.  Dr. Mak also wrote a partial prescription for two week’s worth of Xeloda that would get me through until the June 2nd appointment.

After we left Dr. Makhoul’s office, Don and I reported to Infusion 1 for my monthly, intravenous dose of Zomata.  When we arrived at 3:30 p.m., the waiting area was filled with disgruntled patients, who had been waiting for their chemotherapy for hours. Apparently, UAMS installed a new, state-of-the-art patient charting system that drastically slowed down the chemotherapy infusion process and other out-patient units at the medical center. In addition, the new system crashed twice earlier in the day, creating a back log of patients waiting for their chemo. 

Finally, I was called back at 5:15 to receive the 15-minute I.V. dose of Zomata.  While I was exhausted from being at the med center for more than six hours (and most of it spent in waiting rooms), I actually felt sorry for the Infusion nurses who had no choice but to listen to people complain about the lengthy delays at the same time they were hooking them up to the poison that was supposed to cure them.  Trust me; these dedicated health professionals earn their pay.

For the next two weeks, I faithfully took the Xeloda while my hands and feet continued to show signs of irritation and even began peeling “sheets” of skin. I thought I was going to have to take Dr. Makhoul’s advice and wear socks and tennis shoes, when I found a pair of old-fashioned, “jelly” shoes that felt like I was walking on a cloud.  They saved my poor, throbbing, peeling feet. The fatigue intensified in that two week period, as did my constant companion, diarrhea. If I was to adopt my significant other’s medical philosophy – the worse the side effects, the better its working - then the Xeloda must really be kickin’ butt for me to endure these intense side effects.  The next PET scan would tell the tale.

I reported for the PET scan on May 30 after eating a no-carb diet the previous day/night. PET scans are tricky for diabetics because the radioactive concoction they inject in the system to track cancer cells is almost pure sugar.  It’s important to have a fasting blood sugar of less than 250.  When the radiology tech took a blood sample and tested it, my blood sugar was a whopping 195.  Since finishing chemo last year, my blood sugar has been well controlled and never that high.  I was within the limit, so they continued with the PET scan, which takes about 30 minutes.  While the whirling X-ray machine made its way up and down my body, I had a lengthy conversation with God. When I left the X-ray room that day, I was at peace.

Don and I coordinated our schedules and went to UAMS together for the PET scan results. We had been waiting only a few minutes when the nurse practitioner, Donna, entered the exam room.  She introduced herself then sat down in front of the computer and pulled up my scan results.  She slowly turned around to face me and said Dr. Makhoul had reviewed the scans and narrative report from the attending radiologist and, unfortunately, the news was not good. 

“The oral chemo has not had any impact on the cancer,” she reported.  As I looked at Donna’s ashen, somber face, I knew there was more bad news to come. “Dr. Makhoul is recommending that you go to M.D. Anderson Cancer Institute in Houston for a consult and alternative treatment plan.”  And, there it was. 

I was without emotion.  Don rubbed my back, anticipating there might be a few tears.  He knows me better than that. I’m in the battle of my life and there is no time or energy for a meltdown.

I asked Donna if Dr. Makhoul felt he had run out of treatment options and she was quick to respond, “No.”  She reassured me that the reason he wants me to report to M.D. Anderson is that the facility is a little further along with research and trial treatments for triple negative breast cancer, which is my cross to bear.

Donna told me that the referral from Dr. Makhoul was being sent to M.D. Anderson that afternoon, along with all of my medical records dating back to my cancer diagnosis in May 2013. She explained that I would get a call from Houston within a few days with my appointment date.

triple negative breast cancer, Marla Crider, Little Rock, Arkansas, UAMS, M.D. Anderson, advice
Marla Crider and Don Vowell
Yet again, Don and I silently departed the Winthrop P. Rockefeller Cancer Center in silence, which was happening much too frequently of late.  It was mid-afternoon and all I wanted to do was go back to work and focus on anything but cancer.  Don asked if I wanted him to stay with me that night.  I explained that I really needed the time to process the latest results by myself.  As a trained physician, he understood.

One of the most difficult things I did that afternoon was tell my friends and colleagues at the office – the Arkansas Department of Parks and Tourism.  They were waiting anxiously to finally hear some good news from me.  It wasn’t easy watching Gloria and Savannah fight back the tears when I shared the results with them. And Linda, who has a quip for everything, was speechless.

That evening I had to make the dreaded call to my brothers.  The silence on the other end of the phone was deafening. I told them both that when I travel to M.D. Anderson, I would like for one of them to go with Don and me.  My older brother, Mike, made the decision to accompany us to Houston.

A few days later, I received a call from my newly assigned patient liaison, Carneshu, who told me that my M.D. Anderson appointment was scheduled for July 14.  I was stunned that it would be five weeks before I would report to the cancer institute.  All she told me was that the delay was necessary.  Later, I learned that all the oral chemo must be out of my body before the cancer specialists in Houston could/would see me.  That explanation didn’t help my eagerness to get this show on the road, but I had no choice.

When you have cancer, the worst news you can hear is that the disease has claimed another breast cancer “sister.”  I’m dealing with that reality as I write this blog.  My dear friend and former colleague, Cindy, passed away this weekend after fighting this horrible disease.  When I was first diagnosed in May of 2013, Cindy was one of the first people to contact me and talk me through chemo and what I might expect.  Her guidance was so helpful.  Cindy was only 50 when she died and a true inspiration to many of us who continue the battle.  Ahhh, Cindy… you were like my younger sister and I could not be more proud that you fought so gallantly and with such dignity.

These days, I think often about my pending July 14 journey to M.D. Anderson in Houston and that famous statement from the movie Apollo 13 always comes to mind:  “Houston, we have a problem.”  And, boy, do we!   Now, more than ever before, I am very determined that “Houston” is going to get me back on the path to recovery.  Oh, for the day that I can yell from the State Capitol steps, “Houston, we no longer have a problem.”