POSITIVE THOUGHTS

Well, yesterday’s treatment went very well.  It was a long day, but we knew that going in.  For some reason – probably for a lot of reasons – I was extremely relaxed and calm.  Deep down, I really believe that this cycle will be the one that gives me a nice long remission.  I hope I’m right, but I feel very positive about it.  I’ve been trying to practice my yoga breathing and some stress relieving meditations as well as visualization.  Trying to concentrate on all that is probably why I forgot to worry about the chemo dripping into my port. 

There really was a lot of comfort and well-being about being in familiar surroundings – the lab techs, the pharmacist, the wonderful oncology nurses, the bright and cheery room, the recliner chairs, and the smiling faces.  Then the topper was when half my Drs. staff came up to visit in the afternoon.  Talk about feeling special and very loved.  My kids were texting me, my friends were sending funny photos, and my resident Guardian Angel was right there next to me. 

When we finally arrived home last night, we were welcomed by a big bowl of homemade chicken soup in the refrigerator and a warm, freshly baked loaf of bread delivered by a new friend.  What a wonderful surprise!

I know that the Moffitt surroundings would have been extremely capable and, I’m sure the people would all have been friendly and caring.  But this was more like home.  After all, I’ve been in and out of there for four and a half years.  And last night, when I climbed into my own bed – and woke up this morning without the thought of a 3 hour drive home, I knew we had made the right decision – at least for this time. 

So, today I’ve been goofing off and taking it easy – even though I feel really great.  When all the good meds wear off, that won’t be the case – but it’s wonderful for now!  My pelican patrol boys have been hovering all around our balcony and doing all sorts of aeronautical tricks for us.  Our sparrows and new resident cardinal couples have been checking in, too.  I think they all know what’s going on and they’re glad we’re here, too – not in Tampa.  Actually, I think the little ones are grateful because we’re here to feed them!  The big ones just like to show off for an appreciative audience. 

So, that’s my update for those who care – and I truly can’t believe how many of you do care.  It’s unbelievable when I realize how many of you are out there rooting and praying for me.  You are my support system, my band of angels, my bubble of safety!  Thank you all from the bottom of my heart! 

Sorry about my “for those who care” comment.  But it reminds me of an old Irish proverb:

May those that love us, love us

And those who don’t, May God turn their hearts

But if He can’t turn their hearts, may He turn their ankles

So we’ll know them by their limping!

And Once Again -- THE FIGHT IS ON!!!

Looks like the clinical trial will have to be put on hold for now.  Moffitt is still doing pathology to see if I qualify for the test.  Odds are that I will, but without me – at least for the moment.  This new and decidedly more despicable version of my cancer decided to do some spreading this past week, causing the need for some immediate intervention.  Both my personal guardian angel MD and the clinical trial MD in Tampa made it pretty clear that they would rather I didn’t wait for the trial paperwork to be completed.  The earliest that would have been possible – with everything working exactly on time (hah!) – was February 11^th.  Everyone was in agreement that I should begin treatment now.  

So, tomorrow morning the new regimen begins: Monday/labs – Tuesday/chemo – Wednesday/Neulasta injection.  Then 3 weeks off (six times).  This is a drug that I’ve taken before and it worked very well.  It knocks me down for a while, but it also knocks my vile opponent for a loop, as well.  Hopefully, it will work as well this time around. 

I really had high hopes for the trial.  As I said before, I understand clinical trials.  I was looking forward to all the technical details and protocol requirements and clinical discussions.  I was anxious to possibly take part in changing medical history – to participate in testing a drug that might actually make a difference.  But my BIG BOSS has other plans for me and that’s just fine.  I need to trust more and just go along with Him. He knows how I can best make a difference. Besides, there's a lot to be said for going home to my own bed instead of to a hotel room after chemo and resting in my recliner the next day instead of in the car for the 3-hour ride home.

 

So, for now, I am reading my chemotherapy journals and packing my chemo bag.  I have my anti-nausea meds, my pre and post steroids (not the Lance Armstrong type), my thermometer, BP monitor, and journal next to my bed.  I’ve changed my mammogram appointment and cancelled my teeth cleaning until after all the treatments are completed.  I’ve put a batch of sauce in the freezer along with the makings for other easy dinners.  The pantry has lots of chicken noodle (sick) soup and Ensure.  I’m gathering my puzzle books, lots of yarn for my shawls, my Kindle and my biggest water bottle.  Oh, and of course, my Prayer Quilt is getting a wash and dry and we’ll all be ready to go! 

As I was preparing my “stuff,” I was recalling some “Chemo Etiquette” I read in a magazine a long time ago.  It’s very good advice – for newbies to the chemo room and also for us old warhorses! 

   

                                           Don’t be quick to share your prognosis or details of your disease.  And don’t ask others about theirs.  Be sensitive to the fact that others in the infusion room may be at different phases of treatment and this kind of discussion could be unsettling.  You never know what other people are dealing with. 

 

    Read others’ body language.  Infusion rooms can be lively places, where people chat, share tips, and bond.  But not everyone may be feeling talkative.  If someone is immersed in a book or wearing headphones, they may prefer to enjoy quiet time.  As a matter of fact, if YOU want some quiet time, wear headphones – even if you have nothing playing!  

Thank you all for your many kindnesses and thoughtful notes and, of course, your invaluable prayers.  You keep me strong – we keep each other strong.  That’s what life’s about.  I know it’s not original but – Life isn’t about waiting for the sun to come out, it’s about learning to dance in the rain!  Friends are the Sunshine of Life!  Thank you dear friends! 

CANCER STILL SUCKS

A few years ago, a friend of mine (You Know Who You Are Spooky) gave me a pin that said “CANCER STILL SUCKS.”  I love it!  However, it’s definitely not something I wear to church or to social gatherings with people I don’t know very well.  Now that I think of it, we don’t do a lot of social gatherings – maybe we should start!  Hmmm...something to think about. 

Anyway, I’ve been seen wearing the pin to chemo treatments, doctor’s visits, just about any medical facility, and definitely when I’m feeling “sucky” myself!  So, surprise, surprise, I’ve been wearing it a lot lately.  The vile, disgusting monster has returned with a few new twists this time.  It decided to branch out a bit and set up a few new settlements for its HELL TOWN.  It’s still respecting the organ barriers, thank You God, but it’s pushed me into fighting mode again.  

Once again, the CA-125 lab test has proven accurate for me.  I realize it’s not always a reliable indicator for everyone, but it has been in my case.  My last chemo treatment was in May of 2012.  About 2 months later, the numbers began slowly creeping up.  Nothing drastic, just a steady climb – the last being a jump of over 40 points.  A PET scan was scheduled a few weeks ago and showed definite progression of the disease.  We discussed the options with my incredible medical team and decided on one of two options that seemed the most viable.  As I’ve mentioned before, they are always quick to suggest a second opinion – Moffitt Cancer Center being the usual suggestion, mostly because of relative proximity and previous experience – but any and all other sites are embraced as well.  They truly believe that their patients deserve the best that’s out there – even if they aren’t able to offer it as yet. 

We had been to Moffitt a year ago when my second remission came to an end.  At the time, they reviewed my records and past treatments as well as the planned treatment to begin the following week.  At that time there were no clinical trials that I would qualify for but the doctors all agreed that everything that had been done and everything that was planned for me followed exactly along the lines that they, themselves, would have prescribed.  It’s very reassuring to hear that, even though I trust and respect my medical team completely. 

Well, last week we made the 3-hour trip back to Moffitt with the current scan in hand.  Again they agreed with my treatment thus far.  However, this time they had a trial that I might qualify for.  It would involve the administration of 2 proven chemotherapy drugs in addition to a 3^rd experimental drug.  50% of the participants on the trial would get the trial drug and 50% would get a placebo.   I’m not particularly fond of this “placebo arm” of the trial, but I would still be getting 2 drugs that have worked for me in the past.  I would also fulfill something I’ve thought about for a long time.  I might possibly be able to participate in a clinical trial that will bring an end to this vile disease once and for all – or, at the very least, ease the suffering of future victims. 

The first step was to requisition a tissue sample from my original surgery from the hospital archives.  That has been done and we are now waiting to see if it meets the trial criteria.  We believe it will – we hope it will.  If it does, the next step will be a trip to Moffitt to meet with the study doctor and set up the beginning of my treatments. If it doesn’t, we still have an excellent treatment waiting for us at our home base, right here at Halifax.   

We’re excited, anxious, nervous, eager, motivated, and a little frightened – but very, very hopeful!  I’ve found an unusual twist to the discussions and research and dialogues that have been going on this past week or so.  I've solicited and respected my children's opinions and questions, as well as those of my live-in guardian angel – and I've also spoken with nurses, doctors, and other friends.  I know I’ve mentioned it before, but I worked in clinical research for many years before I retired a few years ago.  We conducted clinical trials – I’m comfortable in this arena.  Suddenly all the research jargon and terminology going on around me are familiar and comfortable. It seems bizarre, but I suddenly feel like I have some control – or, I should really say some understanding, not control, of what’s happening.  I can read protocols; I understand data collection and the importance of equipment calibration.  I get the discussions of biomarkers and pharmacokinetics.  I know what IRBs are and how they work.  It makes sense to me and I guess I feel comfortable – more comfortable than I have in quite a while. 

For the past 4 years, I have simply trusted whenever someone came at me with a needle – or whenever someone hooked me up to a bag of toxic chemicals.  I trusted when someone told me I needed a transfusion, or that my white count was so low I needed to put on a mask and hide in a closet for a few weeks.  For all my medical background, I never worked in oncology; I never administered chemotherapy to anyone.  I simply trusted.  But when you take the time to find very best, it’s easy to trust them.  And I definitely do have the very best!  And now I have the chance to understand, fully participate, and still trust!  And maybe this will be the drug that makes a difference!   

SURVIVAL  TIP  OF  THE  DAY:  Everyone is trying to accomplish something big, not realizing that life is made up of little things.  

Robots and Legos and Seniors - OH MY!

The trophies were made out of Legos!

A few months ago, my daughter mentioned that our granddaughter had been asked to join a Lego team.  It was a small group and they would be building and programming a robot.  I knew K had built lots of things from Legos over her 11 years – most recently a few Star Wars ships, but honestly, I thought Legos were for younger children.  And she’s definitely not an immature 11 – more like 11 going on 21.  She’s already a 2^nd Degree Black Belt, a straight A student, a talented singer in the chorus, and she was voted Student of the Year by the Kiwanis Club last year. She's an avid reader, plays basketball, goes inline skating, and continues to train at the local Dojo and help with the younger students.  This is one busy kid – and she’s going to play with Legos again – on some sort of team???

 

Well, my daughter obviously sensed my confusion – or maybe I just said “What?” a little too emphatically.  Either way, she was kind enough to send me a website that would explain the project.  Admittedly, (I apologize girls) I only briefly scanned it.  Apparently, it also was to have something to do with solving problems for seniors.  This truly didn’t compute in my senior brain.  Were they trying to build robots that would clean my house? Or would the robot teach Grandpa how to send e-mail? Or were we going to play with Legos, too?  It was all very confusing. 

Every Sunday afternoon, she would spend a few hours with this team.  K had called us and asked a series of questions about problems we may be encountering, all related to aging.  I think I gave her a lot more than she really wanted but she was much too sweet to tell Grammy to hush.  Soon the first “tournament” was on the horizon.  I still really didn’t have a clue.  My daughter said it would be from 8:00AM to 4:00PM but we could come whenever we liked.  Well, obviously we wanted to see whatever there was to see and we especially wanted to be there for the judging – of whatever was being judged!  She mentioned that there would be a “robot run” at 12:30PM and 2:30PM.  Stupid us had visions of all the robots parading around the place – on display!  Boy did we have a lot to learn! 

Our granddaughter was now a member of the FIRST LEGO League – a robotics program for 9 to 16 year olds, which is designed to get children excited about science and technology -- and teach them valuable employment and life skills.  Teams are composed of up to ten children who just want to do something awesome.  This year’s Challenge - Senior Solutions – over 200,000 children from more than 60 countries will explore the topic of aging and how it may affect a person’s ability to maintain his or her lifestyle – solving issues like getting around, keeping in touch or staying fit.   As part of the challenge, teams will build, test, and program an autonomous robot using LEGO MINDSTORMS® robot to solve a set of missions on an obstacle course. Teams will also need to identify and research obstacles for Seniors and then suggest ways to improve their quality of life.  

The Tournament Field

Each Challenge has three parts: the Robot Game, the Project and the FLL Core Values. Teams participate in the Challenge by programming an autonomous robot to score points on a themed playing field (Robot Game), developing a solution to a problem they have identified (Project), all guided by the FLL Core Values. Although the audience mostly sees teams playing the Robot Game at tournaments, teams are also being judged on their adherence to FLL Core Values, their Project, and their Robot Design. 

Before the team can even begin to address the challenge, they must follow strict directions to build a “field” on which the robot games take place.  It involves a complicated mat design, building the robot itself, and then building the models for the robot’s missions.  Of course you also have the software involved in programming the robot.  And I thought they were playing with blocks. 

The tournament we attended brought together 17 local teams to participate in this first level challenge.  It was held in a large high school cafeteria.  Each team had its own staging area around the main competition floor and they each had their Project on display.  One team’s Senior Solution was a microchip that would be embedded in a senior’s tooth – a GPS locator that had to be flossed!  Another group designed a cart that operated on hydraulics.  It could be raised or lowered according to the height of a senior’s car trunk to assist in loading and unloading heavy items such as potting soil, dog food, cases of wine (oops!), etc.  My granddaughter’s team designed an interactive flat screen that could be programmed to display a variety of information: appointments for the day, medication schedules, and family events.  By a simple touch, it could also summon emergency services or show your favorite TV show.  The winning team designed a pill box which could dispense medications at the appropriate time therefore acting as a reminder and a preventative for overdosing.  Each project was more innovative than the last.  We were incredibly impressed.  And then the fun began -  the Robot Games. 

Programming Robot to perform a mission on the field

This was absolutely mind blowing.  These kids – and they really are just kids – were able to program and re-program and re-program these robots over and over to perform very intricate and specific tasks (missions) on the field.  They had a very few minutes to successfully perform as many missions as possible to gain the most amount of points.  To watch those little fingers punching in coded sequences for each mission at the speed of light was, to say the very least, extraordinary.  The points are only a small part of their score, however.  

Each team is interviewed by a panel of judges – no coaches allowed.  The judges want to determine if the participants actually understand the intricate design of their individual robot and its missions and if they actively participated in choosing and solving their Project.  In other words – did they actually do the work or did Mommy and Daddy and Coach have all the fun.  The final, and judging by the sportsmanlike behavior of the teams we met, the most important criteria are the core values – Gracious Professionalism and Coopertition (no I didn’t spell that wrong).  Gracious Professionalism is a way of doing things that encourages high-quality work, emphasizes the value of others, and respects individuals and the community.  Coopertition is displaying unqualified kindness and respect in the face of fierce competition. It’s founded on the concept and a philosophy that teams can and should help and cooperate with each other even as they compete. 

Okay, I guess you figured out that we were duly impressed, inspired, and well-educated on the FLL. We were also incredibly proud to watch our granddaughter’s team take the award for Robot Design, come in second in the robot mission scores, and receive an invitation to the next level Challenge.  Wow, what a day.  I wonder if those teams take orders for those devices???  I still want a robot to clean my house.  GREAT  JOB  K!  We love you.

SURVIVAL TIP FOR THE DAY --  I've said it a thousand times, I learn something every day.  That day I learned enough for the whole month!  You can find more information about the FLL at http://firstlegoleague.org.