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Dear Doctor, This Is Your Written Warning

When Sherryl met with her doctor last week to learn the results of the latest PET scan, he entered the exam room and, in a matter-of-fact I-do-this-every-day tone, delivered these words to her:  "Well, we're running out of options."  His follow-up remarks included information she'd not heard before, that cancer is and has always been present in the clavicle and in both arms. 

The doctor proceeded to explain that he would be presenting her case the following evening, as he's done in the past, to the "tumor board," a group of medical professionals who review cases together to determine through consensus the best course of treatment from that point forward.   

Sherryl was shocked and hissing mad at the words that she heard from her doctor.  Actually, she was p***ed.  But since this is a family blog, we won't use that word.  First of all, for him to tell her he is "running out of options" is, short of medical errors that result in a sentinel event, the worst possible care a doctor could give to his or her patient.  Speaking the truth is one thing, speaking it without a caring and empathic demeanor is quite another.  Any seasoned physician knows better than to project a defeatist attitude to his or her patient.  And in the case of cancer patients, the way these comments were delivered is unfathomable, shameful, and negligent.  Secondly, in two and a half years of doctor visits, hospital stays, and numerous tests and treatments, Sherryl has never been told cancer is present in the clavicle and both arms.  So, is the information correct or not?   If it is correct, when did cancer appear in those locations and why didn't Sherryl know it was present before this visit?

We (Sherryl's sisters) have both worked with doctors for decades and some of them are very good friends of ours.  We know the difference between a good doctor and a bad doctor.  We've experienced high quality care and we've been down the thoughtless doctor-patient-relationship road before.  For the latter, there was an unfortunate telephone conversation one oncologist had with our mother -- before she was diagnosed with cancer.  "Do you have a history of cancer?"  No, she replied.  She had not had a history of cancer and, following a variety of symptoms and a battery of tests, this was the first time she was hearing the word "cancer" correlated in any way to her health.  The doctor offered no more information, just asked more questions.  She  happened to be by herself at the time, hung up the phone, and fell apart.  Her life was never quite the same again.  "Do you have a history of cancer?"  By phone!  We blasted that oncologist for the poor judgment he used and for the impact it had on Mom. 

Sherryl is a model of optimism and, in fact, several of the staff who are part of Sherryl's health care team have labeled her as their "poster child" because she is such a fighter.  We all see her strength and determination on a daily basis and, because of her, every word that is typed onto this website reflects the cheerful joie-de-vivre she exudes while simultaneously waging an intense war against breast cancer.  Even living with the disease, she continues to teach and inspire people of all ages.  No one -- doctor, lawyer, or Indian chief -- will change Sherryl's mental well-being by saying aloud to her a string of 6 words that has the potential to dash all hope for the future.  One of the roles of any health care professional is to champion their patient!

So Doctor, this as your written warning.  Sherryl has choices.  Choices in doctors, and choices in who communicates to her any and all medical prognoses.  We know doctors are not gods. While they are human beings complete with gifts and faults, accuracies and errors, some of them are  most certainly heroes walking among us. Individuals dedicated to the health and well-being of humanity.  They save lives every day, they are dedicated to total health through prevention and early detection,  and they work to better the health of the people who live on this planet.  Individuals who spend their vacations in third world countries educating and vaccinating the populace, and bands of them who volunteer their time to triage and treat the weak and wounded when a natural disaster has occurred.  Doctors we know left their families and jobs because critical medical attention was needed following the Indian Ocean tsunami of 2004 and Hurricane Katrina of 2005.  Angels in stethoscopes, every one of them.   

Based on a previous incident, it seems apologizing is not within the scope of your practice. You should consider learning that skill.  If you, however, for one second forget how you should be delivering new information, good or bad, to your patients, you'd be wise to remember one thing.  Legal checks and balances are in place, for you as a medical professional and for Sherryl as a patient.  Sherryl can switch doctors in a heartbeat, pun intended.  And do not for one moment underestimate the magnitude of the power that exists in Sherryl's support team, one that spans the globe.  It's palpable. 

So do your job.  Be a medical doctor.  And remember the words of the Hippocratic oath you took when you earned your credentials:

I swear to fulfill, to the best of my ability and judgment, this covenant: I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm. If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

The Hippocratic Oath: Modern Version; Source: NOVA

Wiped Out

Living with cancer can be tricky and skillful navigation is required to get through the physical and emotional ups and downs.  All can be going relatively smoothly, and then the disease kicks hard.  Cancer has kicked Sherryl hard over the past several days.

Although she continues to push herself, Sherryl feels wiped out.  She's had Nupogen shots, but she's had nno chemo medications for 2 weeks.  She typically feels more energy during the off weeks of chemotherapy; that's not the case this cycle.  She's frustrated that she doesn't have the energy to do small tasks around the house. 

The PET scan is scheduled for this Thursday, and an appointment with the oncologist will be scheduled the following week.  For now, she's staying cool since there is a heatwave, and she's getting as much sleep as she needs.

Our family will celebrate the 4th of July holiday together, a tradition Sherryl began over 20 years ago.  We're all hoping Sherryl's energy returns by then so she can enjoy every moment of it again this year. 

~xoxo~ 

Tumor Marker is Up

Disappointing news, Sherryl's tumor marker increased from 107 on May 14 to 160 as of this past week.  Another PET scan, which is due about now anyway, will be scheduled for this week.  Sherryl will receive Nupogen shots next week and the next appointment with her oncologist is the first week in July. 

Although Sherryl has been tolerating CMF chemotherapy treatment relatively well, she has felt much fatigue the past several days.  As usual, she is paying close attention to her energy level and resting whenever necessary.

When Sherryl does have some energy during her free time, she spends a bit of time on the computer reading email or playing one of her favorite word games.  We know she loves Scrabble, and she also loves an AOL game called Word Zen. 

And when her energy is higher than expected, as it has been today, she talks a mile a minute, sounds as perky as ever, and takes on projects the likes of which would exhaust most of us.  Today, since her laundry room painting project is finished, she is cleaning out the very huge craft closet at home.

A very Happy Father's Day to all of the fathers who are RaRa fans!

~xoxo~   

PET Scan Results & New Chemotherapy

Sherryl saw Nancy on Friday and learned the results of Thursday's PET scan.  The overall outcome is best stated in Sherryl's words.  "I do not, do not, do not have any cancer in the liver or any other major organs.  There's only a slight, and Richard and I are focused on that word slight, increase of cancer in the spine and both hips."  Nancy explained that the bit of pain Sherryl sometimes feels in her lower back is probably muscle.  Nancy gave to Sherryl a copy of the PET scan report, which she poured over to absorb every last detail.  The test was summarized in impressions; numbered below are the highlights. 

Note: Just double click on any word to see its definition.

1. Mixed response to most recent therapy w/decreasing activity seen throughout a large portion of the thoracic spine with multifocal regions of increasing activity, most notably at T2, T11, L2, and right anterior superior iliac spine.  Remaining bony activity is relatively stable.  Stable L compression deformity.
2. Ill defined right upper lobe parenchymal opacity mildly increased in extent since prior exam suggests possible inflammatory disease although neoplasm cannot be excluded.  
3. No other evidence of new visceral metastasis.

Nancy next explained that she and Sherryl's oncologist discussed two chemotherapy options and decided that, given Sherryl's preference to stay active, a cocktail combining oral and intravenous medications is the best treatment at this time.  The new chemotherapy treatment is called CMF.

The C in CMF stands for cyclophosphamide, the M stands for methotrexate, and the F stands for fluorouracil, which is also known as 5FU.  Sherryl will take 1 pill per day for 14 days.  And during those 14 days, she will go to the lab twice a week to have her blood drawn.  On the day after she has her blood drawn, she will go into the the Marin Cancer Institute (where she receives most of her care), for the IV portion of the chemotherapy.  

After those two weeks are completed, no oral or IV medication will be administered.  So, the CMF cycle for Sherryl will be 2 weeks on and 2 weeks off.  Side effects may include fatigue and nausea, but another oral medication will be prescribed to offset nausea.  And there will probably be no hair loss as a result of this treatment.  

Sherryl was so disappointed when she learned the tumor marker had spiked that she was bracing herself for some bad news in hearing the results of the PET scan.  She didn't have a good feeling about it, so she was more than relieved to learn there is no cancer present in any organs and that it has spread only slightly in the spine and hips.  Resilience returned immediately and, after her appointment with Nancy on Friday morning, Sherryl returned to Day Care to finish the day.  She had dinner with a friend on Friday night, and spent most of Saturday out and about.  By Saturday evening, she was home and ready to nest for the evening and all day Sunday. 

But there is that small matter of the transition to Daylight Savings Time. . .

The day we turn our clocks ahead one hour is and always has been RaRa's least favorite day of the year.  Because she just hates losing that hour.  Whether she is at work, out and about, or at home, RaRa is highly productive.  And while she has added required sleep as a new measure of productivity, she really hates to lose any time at all.  With all that RaRa can accomplish in 60 minutes, an hour is a terrible thing to waste.  We'll just have to watch to see how she makes up for that lost time, because we know she always does.      

One Step Forward, Two Steps Back

Since it has happened in the past, we were all hoping the lab had made a mistake in processing Sherryl's blood and that the tumor marker of 168 was wrong.  Nancy had the lab re-check their processing, and it was confirmed the tumor marker is correct.

Sherryl had responded well to the current treatment plan, so there was no reason to schedule a PET scan since the previous one was done last October.  Given the spike in the tumor marker, Sherryl will have another PET scan on Thursday, March 5, and she will probably learn the results the following day.  Then Sherryl's medical team will determine the next course of treatment, which will include a change in chemotherapy medication since she has stopped responding to the one currently administered. 

The spike in the tumor marker feels like a major setback.  The only pain Sherryl feels is very low in her back, but the pain is not constant.  And she is so good about getting as much sleep as her body tells her she needs.  The new tumor marker comes as a blow and Sherryl has not felt this disappointed in a long time.  She said, "This is the best I've felt.  It's so disappointing to find out this chemo isn't working any more."  

She went on to say that it feels like a roller coaster, driven by the tumor marker highs and lows.  Each time the tumor marker spikes, a new plan is needed.  Her body response well, the tumor marker drops and all is well, then her body stops responding and another change is needed.  One step forward, two steps back.  Nancy has reassured Sherryl that there are many, many options available relative to chemotherapy medications and treatment plans.

Through this entire journey, there is one thing that Sherryl says she's learned to do that brings her great pride.  She has a new way of crying, and she's really excited about it.  She's able to cry without her face contorting.  What Oprah calls "the ugly cry," Sherryl calls "contorted face cry."  In the two years she's had cancer, Sherryl has learned to relax the muscles in her face and now just lets the tears roll down her cheeks.  No facial contortion.  At all.  She doesn't cry often, but when there are setbacks like this one and tears well in her eyes, this new way of crying is great progress. 

The "new way of crying" story doesn't translate well without Sherryl's voice.  She explains it in a way that has her audience in hysterics.  And ultimately, she's once again found the proverbial silver lining in the looming cloud.  Even with a spiked tumor marker, pending PET scan results, and a to-be-determined treatment plan, RaRa is laughing.  But we've seen this attitude surface in the past.  Lesson: Never underestimate RaRa's resilience.

PET Scan Results

Sherryl and Richard met with Nancy today as well as with Sherryl's oncologist.  The PET scan shows the cancer has progressively worsened, cancer cells are significantly active in numerous areas, and there is new disease present.  Active cancer cells were found in the skeletal system, specifically in the pelvis, hip, thoracic spine, right rib, pubic bone, and right leg. 

The new treatment plan will be as follows:  

Sherryl will discontinue oral chemotherapy.

An x-ray was taken today of the right femur (leg); Nancy will call Sherryl when results are known. 

Chemotherapy medication has been changed to Adriamycin, which is administered intravenously weekly; she received her first dose today.  This form of chemotherapy is not a drip.  It is given via syringe and is accompanied by saline.  Total time to receive chemo in this form is approximately 30 minutes.  Side effects might include some nausea and thinning hair.  It does not cause fatigue; fatigue may be experienced due to cancer.    

An echocardiogram (ECG) is ordered for this Wednesday as the heart will need to be monitored with this form of chemo.   ECGs will be performed every couple of weeks or as deemed necessary by Sherryl's doctors. 

In order to ease the process of drawing blood and administering chemotherapy through an IV, a port will be inserted next week in the top right chest area.  This procedure will be performed by 2 radiologists, will be done under partial sedation, and will last approximately 2 hours.

The tumor marker will be measured in 6 weeks.

Physical therapy to the arm will occur as frequently as possible to reduce the edema.   

There is also a lesion on the liver, but it is not positive for cancer.  The radioactive dye, injected for the purpose of the PET scan, was not drawn to the area which indicates no cancer cells are present.  This lesion was compared to one that appeared under Sherryl's arm several months ago but did not appear in a subsequent imaging test.

The spiked tumor marker was an indication of change.  Although old cancer cells are dying off, new cancer cells are immune to current treatment medications, an indication that the old treatment plan has run its course.

Sherryl has been experiencing some pain and muscles tightening in her back.  She was recalling that the news she heard today was very different than the news she heard following her PET scan in July.  Those results indicated only L1 was resistant to treatment, so 2 weeks of radiation treatment was prescribed.  And it was in July when she heard that her bones were getting "better and stronger."

After hearing the news today, Sherryl looked at her doctor and Nancy and asked, "So is this it?"

"Absolutely not!"  Both jumped to ensure Sherryl that this is only her third treatment plan, and that there are other patients who are on their eighth and ninth plans.  She was reassured that there are many, many treatment options and they will continue to evaluate what Sherryl needs on a weekly basis.  Each treatment plan is continued until it stops working at which time all factors are reevaluated, then changes are made accordingly.  

Sherryl is disappointed the news is not good, but she is relieved to know the results as it's sometimes more difficult to not know and have to wait.  When she got home today, Sherryl made a couple of calls, went back out to the grocery store, then came home again to rest.  She has not shed any tears today, but she knows they will probably come at some point.  Because even in her incomparable resilience, sometimes there are tears.     

PET Scan Scheduled

Sherryl's PET scan is scheduled for Thursday morning and she has a follow-up appointment with Nancy to learn the results on Monday, October 13.  She's feeling relatively well with some fatigue, so she is getting lots of sleep and she's planning to have a low-key weekend.

We'll let you know as soon as we have the PET scan results.  In the meantime, let's hold good thoughts as we listen again to one of Sherryl's favorite songs. 

Appointment with Nancy

Sherryl met with Nancy this morning.  It was a routine appointment; she was expecting to learn the latest tumor marker and she was due for another dose of Zometa.  The tumor marker was not yet available, so she'll call Nancy on Monday.

Sherryl told Nancy she was experiencing a small ache in her lower back.  Nancy advised Sherryl to skip taking Xeloda this weekend and they'll determine next steps during their conversation on Monday.  It has been 3 months since the last PET scan, so another one may be ordered depending on the tumor marker and whether or not the ache in her back continues.  

The edema in Sherryl's left arm is still present, but it is expected to be minimized by wearing a sleeve that will apply pressure to the swollen area and by physical therapy. 

Following Sherryl's conversation with Nancy, she went to the "chemo room" for Zometa.  Two nurses, 5 attempts to find a vein, one dose of Zometa, and 45 minutes later, with mocha in hand, she headed to Bed, Bath and Beyond with Arleen to do some light shopping.  Then she returned to the Marin Cancer Institute at 1:00 PM for her physical therapy appointment.

Sherryl's spirits continue to be high.  She loves spending the week at day care, and she loves spending evenings and weekends with family and good friends.

We'll let you know the outcome of Sherryl's follow-up conversation with Nancy as soon as possible!

PET Scan Results

Note:  This is a quick update; hyper links to technical terms will be provided later this evening.  All edits completed.

Sherryl met with Nancy this morning to learn the results of the PET scan that was performed last week.  The news is better than we anticipated.

Cancer has spread in the L2 area of Sherryl's back, so radiation will be scheduled for that area.  In addition, the scan shows something under the left arm, but it cannot be felt so the plan is to watch this area closely.

• With the exception of L2, the condition of all other bones has IMPROVED! 
• There are no spots on the lungs at all; tests show the lungs are completely clear.
• The tumor marker increased to 185, but it is believed that this increase is due to the activity around L2.
• In addition to beginning radiation, Sherryl will resume taking oral chemotherapy, Xeloda, as well as Zometa, which has significantly improved the density and strength of her bones. 
• She will have blood work done once a week and will see Nancy once a week as well.
• An MRI is scheduled for Thursday to focus on the L2 area of her back.

So, the news is good.  And there is no sweeter sound in the world these days than Sherryl's voice when it is full of relief and excitement.  Excitement because she gets to live her life, continuing to work at day care and spending time with family and friends.  That is, after all, all she has ever really wanted to do. 

Good for you, RaRa!!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

9:00 PM:  Sherryl spent the remainder of the day puttering about her house.  She told us this evening that she didn't realize how stressed she was in anticipation of the PET scan results, and said every time she thinks about the good news today, her "shoulders just drop." 

As optimistic as Sherryl and the rest of us are, those worries have a way of sneaking into the nooks and crannies of our minds -- until the official results are known.  Sherryl's were not the only shoulders that just dropped today. 

"Disappointed, Not Devastated"

Those are the words Sherryl used to described how she felt following her appointment today with her Oncology Nurse Practitioner, Nancy.  Here is what she learned today:

• The tumor marker has increased to 292.
• The PET scan shows cancer spots are present in all four sections of the spine: cervical, thoracic, lumbar, and sacrum. 
• Small cancer spots are present on 2 ribs and on both lungs.
• No cancer is present in the liver or kidneys.
• Nancy stated this form of cancer is a chronic condition and, with the right treatment plan, can be controlled.

Sherryl will have two MRIs today and another on Friday.  Her next appointment with her oncology team is next Tuesday when she will receive further results and then learn how her caregivers plan to proceed with treatment.

In preparing for this morning's appointment, Sherryl has readied herself over the past month to hear anything -- good news, bad news, and everything in between.  Now that the results of the PET scan are known, she told us she's disappointed, but not devastated. 

She also said she was very much looking forward to enjoying a mocha this afternoon but can't have one because of the two MRIs scheduled for later today.  In typical RaRa fashion, she told us, "I'm fine, and I want everyone else to be fine, too."