Creative Problem Solving

In case anyone decides to tackle a "re-design" of the human race, I have some suggestions.  Instead of one thumb and four fingers on each hand, I highly recommend humans having two thumbs and three fingers on each hand.  This is based on the recent past where I have temporarily lost the use of some fingers, alternately followed by the inability to use my thumbs (all related to joint problems - a known side effect of Vemurafenib).

When my index fingers were out of commission, my other fingers could "fill in" and I could still function pretty well.  When my thumbs were messed up, all my fingers were poor substitutes for just about any task.  Just picture pulling your pants down, your socks up or using your hands to write, peel, cut, button, etc. BUT  imagine executing these moves with out utilizing your thumbs.  Thus my inclination to:

•  wear skirts lately to avoid maneuvering pants either up or down
• be grateful for the recent unseasonably warm weather eliminating the need for socks
•  cease making salad to avoid holding a knife and chopping
•  blah, blah, blah

 Thankfully, each joint is only affected temporarily.  Of course, this means that once I find a way to adapt to the current joint problem, a new issue arises in another location.  However, it is a blessing that the difficulties are not cumulative.  Otherwise the compounding of problems would render me rather debilitated.  I simply have an ongoing need to discover creative approaches to accomplish tasks.

So far, I have been successful at finding a solution (other than obtaining assistance from some one else).  I have become much more ambidextrous and can now use either hand to eat, brush my teeth, comb my hair, etc.  You never realize how much you favor one hand over the other for certain things until you are forced to use the opposite hand for everything.

Perform an experiment by swapping hands for a few basic tasks.  It is unbelievably awkward - but doable.

In the end, the one task that finally stumped me was hole punching legal documents at work.  When my hands and wrists were on the fritz, I could operate the hole punch by leaning on it with my elbow.  Once my shoulders were jacked up, the only solution I could come up with was to sit on the hole punch - which even for stubborn Peggy was a little too crazy.


Ultimately, I asked a co-worker if I could trade a task with her.  She hole punched the loan documents for me without handing off something on her 'to do' list to me.  This is one small example of the endless amounts of help which have been graciously offered to me both at home and at work.   Hopefully everyone knows how grateful I am for all the assistance.

Prayers Answered

The Vemurafenib is working!  In just 28 days, my remaining brain tumor is significantly smaller AND equally important - no new brain tumors were detected in my latest MRI.

When Dr. Flaherty told us the phenomenally good news, I wanted to jump down from the examining table and dance.  However, I was having "one of those days" (swollen and inflamed joints in my feet, knees and shoulders were making walking and standing a little complicated).

I teasingly asked Keith & Melissa why they weren't whooping it up for me.  Later, I realized they were too stunned to react.  The outcome - an absolute reduction in the size of the tumor - was more than we had hoped for after only 4 weeks of treatment.

If the tumor had merely stopped growing, that alone would have been a cause to celebrate.  The fact that the medication also appears to have halted the development of new tumors (for now at least) calls for downright rejoicing.

When Keith and I were driving Melissa to the airport today, she admitted that this was the first time since last August that she felt okay about leaving.  Although she mentioned that it would have been lovely to have time to go out and celebrate such a great outcome.  I settled for her officially dancing by the curb when we dropped her off  - only to have Keith perform his own little 'happy dance' for me right there too.

I EXPECT EVERYBODY TO GET UP AND DANCE AFTER THEY READ THIS (EVEN IF YOU ARE AT WORK).  FEEL FREE TO PUNCTUATE IT WITH A FEW YAHOOS.  TEARS OF ABSOLUTE JOY ARE ALSO AN ACCEPTABLE OPTION.

Our Friends and Family - How Great Thou Art!

THANK YOU!  THANK YOU!  THANK YOU!


I cannot tell you how much I have been looking forward to this day.   St. Augustine / St. Monica is not merely physically gorgeous, the atmosphere is downright inspiring.  Father Dan and his congregation are always so warm and welcoming to visitors.  The gospel choir sings beautifully and their rendition of "How Great Thou Art" brought several people to tears. In fact, everyone in attendance thanked us for connecting them to such a vibrant community.

Frankly, I expected the mass to be uplifting. I was pleased that the gathering managed to surpass even my lofty expectations.  Keith, Melissa and I were grateful for the amazing show of support today (the KMA posse consisted of more than 100 family and friends, doubling the size of a typical Sunday mass).

As if that was not enough, the flash mob that performed in the parking lot after the service blew me away! 

Stay tuned for pictures (please send yours if you haven't already).

Social Gathering After 10 AM Mass on 3/18 Reloctated to Detroit Golf Club

The congregation at St. Monica / St. Augustine (SASM) is holding a celebration of St. Joseph's Feast Day this Sunday after the 10 AM mass.  Since the parishioners will be utilizing the social hall to serve their meal, our social gathering after the 10 AM mass is being relocated to the Detroit Golf Club (DGC) so as not to disrupt the church's onsite celebration after the 10 AM mass.

DGC is approximately 10 miles away from SASM - west of Woodward Avenue and south of 7 Mile Rd.  The address of the club is 17911 Hamilton Rd. Detroit, MI 48203-1708.  It is accessed off of Pontchartrain  Blvd. (which is the first intersection west of Woodward).

When heading south on Pontchartrain Blvd. from 7 Mile, the club entrance is the first right turn - approximately 1/4 mile from 7 Mile Rd.  You will see the golf club straight ahead.  Just a heads up: MapQuest and other mapping sites will instruct you to turn on Hamilton Rd (which is the residential street that surrounds the club)  Just head straight through the brick entrance to the club.  Please call Keith's cell (248.730.3452) Peggy's cell (248.214.4412) or Melissa's (617.290.9033) if you need additional help locating the club.

Inform the guard at the security station that you are coming to the club for my gathering.  There is a covered drop off area at the main entrance of the clubhouse.  Once inside, someone will be able to direct you to the room we will be using.  Coffee, tea and juice will be served along with a fruit and vegetable platter and some rolls.

FYI: BLUE JEANS ARE NOT ALLOWED IN THE CLUB HOUSE.  

We are looking forward to seeing everyone!

What? No Side Effects?

As of last Tuesday, I did not appear to be experiencing any of the known side effects from Vemurafenib.  Because it had been a week since I began the drug study, both Keith and I couldn't help pondering the following questions:

• Does this mean the drug is not working for me?
• Should my dose of the drug be adjusted?
• Am I going to be the statistical outlier who receives the benefits of the drug but exhibits none of the associated problems?

Here are the answers:

• There is no correlation between the presence or onset of symptoms and efficacy.  Some patients have not exhibited side effects for months, others present with side effects immediately.  Some patients experience numerous side effects, others have very few.
• Typically, nothing regarding dosage is changed before the 28th day of treatment.  Everyone starts with the same dose.  Unless there is a major problem,  the dose remains the same.
• Even though I love to swim in the 'overachiever pool' and have already demonstrated that I am not the typical patient with stage 4 metastatic melanoma, it is highly unlikely I will avoid all side effects.

By last Friday, the 'Symptom Samba' began - although it took me a while to recognize what was going on.  I could not seem to get comfortable in bed that night no matter how I arranged the bed pillows.  My left shoulder was aching.  Geez - did I over do it when I worked out at the gym on Thursday?

While having dinner at friend's house on Saturday, the index finger on my left hand was so sore it was driving me crazy.  Heck, I didn't spend the afternoon chopping while making dinner.  I merely showed up with some vegetables to steam.  Did I somehow strain my finger carrying something?

Duh! I was beginning to experience joint & muscle pain.

By Sunday, the swelling set in and I started applying ice packs to minimize the discomfort.  We sure have gotten our money's worth for the 'pea packs' we purchased from CVS last August when I started this journey!  Fortunately, we have become quite adept at utilizing them with ace bandages to hold them in place.

When we saw Dr. Flaherty for my 2 week check up this Tuesday, it was also discerned that the nausea I have been having is related to the Vemurafenib and not a lingering side effect of my last Gamma Knife radiation treatment at the end of January..  The good news is that sucking on crystalized ginger or peppermints helps to alleviate the nauseous feeling.

Pretty soon, I was limping because my left ankle was now part of the joint pain.  At least by this point, I wasn't mistakenly attempting to attribute this to something else.  In the big picture, these are mere discomforts and I have faced much bigger demons than a few aches and pains.

Plus, having Keith around always makes me better - not to mention the pleasure of anticipating Melissa coming home at the end of next week.  It doesn't get much better than that!