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Tired, and Waiting for Results

Sherryl is still in the hospital.  In addition to the CT scan, an MRI was done yesterday.  Sherryl's radiology oncologist will arrive in Sherryl's hospital room some time this evening to give her the results.

She has not slept very well over the past two days, so medication is being adjusted accordingly.  As of early this afternoon, she'd had a little lunch, was chatty with immediate family and the nurses, and may sleep a bit before the visit from her doctor.

Thank you for all your prayers and good wishes.  They mean the world to Sherryl and to us.

~xoxo~ 

Hospitalized for Pain

Sherryl has been experiencing pain in the left thigh the past few days and has had a hard time walking.  The pain worsened, so she called the oncologist's office on Saturday and was told it may be sciatica.  By Sunday the pain was worse and became excruciating, so much so that Richard pulled out her walker.  She made an appointment to see her oncologist today and, during her appointment, a CT scan was ordered.

The doctor wanted her to be hospitalized for the test and pain management, so Sherryl was admitted to the hospital this evening.  Results of the scan are expected no later than tomorrow.  

It has been a busy summer and Sherryl's strength and spirits have been good.  She's worked at day care, enjoyed a week of vacation, and continued to spend time with the people she loves.  As she began treatment of the new chemotherapy, Gemcitabine or Gemzar, her blood cell counts dropped postponing the planned infusion schedule.  She was administered chemotherapy last week; fatigue is the most prominent side effect.

Sherryl also spoke her peace to the physician who told her they were "running out of options," so we'll be sure to explain the details of that story in the near future.

Chemotherapy #5: Gemzar

Following the "we're running out of options" appointment Sherryl had with her doctor and the subsequent case review by the tumor board, Sherryl placed a call to her doctor and he called her back on Saturday morning.  Here is a summary of what he told her:

Overall, the disease is looking better.  There is a "slight" spot on the humerus of both arms and a very small spot on the clavicle.  The new chemotherapy that will be administered is Gemcitabine, also known as Gemzar.  Sherryl will receive 1 infusion per week for 3 weeks and then will have 1 week of no chemotherapy.  There was discussion, too, of the original fracture to Sherryl's back and a procedure that will strengthen that area in her back is being considered.  The cancer is "not worrisome," and all areas where the disease is present will continue to be watched closely.  A new tumor marker will be ascertained within the next week or two.

Sherryl told her doctor her energy is good now, that she was planning to take a week of vacation, and that she'd like to feel good while on vacation.  Her doctor agreed that the new chemotherapy treatment can begin after her vacation. 

So, Sherryl is currently enjoying a week of good energy and free time.  She's spending most of her time at home since nesting is one of her favorite things to do.  She has not forgotten the phrase "we're running out of options" and intends to have a very direct conversation with her doctor the next time she sees him.  Two words: Go RaRa!!!

Special thanks to all of you for your continued support and concern for Sherryl's health and well-being.  Her spirits are buoyed by your thoughts, prayers, intentions, and actions.  Whether you see her often or hardly at all, please do not underestimate the power of your love for Sherryl. 

And we hope you're enjoying your summer!  

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~   

Loving the Simple Life

Sherryl saw her doctor last week and learned she is still anemic.  She was told there is nothing for her to do to increase her red blood cell count and that chemotherapy medications will be adjusted for this reason.  Overall, she feels great.

Sherryl has commented lately how much she is enjoying "living a very simple life."  Family and friends, work and play.  There is uncomplicated routine and she loves it.

She had another fun weekend doing the things she loves most: spending time with family and friends of all ages.  She rested on Friday, and on Saturday she had a massage, took Haley to her gymnastics class, had lunch with Austin, Haley, and Arleen, then made lollipop trees with Austin and Haley. 

Always crafting frugally, Sherryl took the children to buy lollipops and Styrofoam cones.  Simple, fast, inexpensive, and fun, creating those trees was the activity for Saturday afternoon.  Another slumber party at RaRa's house for Austin, Haley, and Annie, and then home they went on Sunday with their parents. 

The finished lollipop trees are absolutely adorable.  As for the time RaRa, Austin, and Haley had together, a picture paints a thousand words.  But a thousand words may be too many when you're loving the simple life.  These pictures seem to say it all.   

~xoxo~ 

 

Austin, RaRa, and Haley ~ June 6, 2006

Good News ~ Tumor Marker is Down

Sherryl met with her oncologist today and learned that her tumor marker has dropped from 168 in February to 107 today.  This is great news!  Sherryl's oncologist also told her that she is anemic again, so a course of shots were prescribed to boost her red blood cell count.    

The timeframe for the next bone scan was also discussed today; the next one will probably be scheduled for 8 weeks or two chemotherapy cycles from now.  

Except for some fatigue, Sherryl is doing well.  Her appetite is good and she feels OK.  She experiences no nausea and, in general, is thrilled to be able to function fully under the current treatment plan. 

Sherryl needed to stop into the clinic yesterday and one of the nurses approached her to tell her she had a "message from a friend."  Nancy, who has moved on to her new job, had asked the nurse to tell Sherryl hello for her.  Sherryl was truly touched that Nancy had thought to send her that message.

Sherryl continues to work at Day Care every day and this weekend will entail attending Austin's last Little League game, a massage, and spending time with family.  

All things considered, life is pretty good right now and we're all grateful for it.       

~ 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.      

Feeling Better / Prayers for Marie

Sherryl saw her oncologist today and they reviewed together her reaction to the current chemotherapy treatment.  Once anemia is no longer an issue, if Sherryl still feels tired as a result of this medication, the oncologist suggested that a lower dose may be the way to go.

Sherryl's voice is absent of fatigue, but she is still getting plenty of sleep.  And she is relieved to know that adjustments to medication dosages can be made based on fatigue and energy level.

Our cousin Marie, mother of two sons who are day care alumni, is not feeling well at all these days.  Fortunately, she is in Auntie Pattie's good care.  We are all sending love, prayers, and good thoughts to Marie, and we ask that you please do so as well.  Thank you!