Some News from Nancy's Daughter, Kelley

Hello to all those who read my mom's blog. I know she cherishes every one of you dearly and wanted to send word to anyone that we haven't reached yet that things are not looking well for Mom. Michael & I are both here, as is Bob. We are by her bedside supporting her, talking to her, and cheering her on to wherever it may be that she is headed to next. We will keep you updated with news and feel free to express your loving support here. I know she would not want us to be woefully sad - rather, she would want us to lift her spirit up with positive energy from the life she has lived and the legacy she has left. Thanks to you all, this is a small reminder to make every second count.

With Love, 

Kelley

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OVER AND ALMOST OUT

To all my dear friends and those just simply interested in my close shave with death, here is my story:

On the evening of Friday, June 3, I experienced a major "melt down" due most likely to one of the following - an overdose of meds given to me by my radiation doctor OR a continuation of a Zometa drip shortly before my experience with severe pain and a semi-comatose condition so bad that my husband and his daughter spent 6 or more hours trying to get me into bed (a repeat of a similar situation that my own daughter and daughter-in-law had dealt with a week or so prior. To say it was frustrating for each of them is putting it mildly. By the morning of Sat., the 4th I was more than ready to throw in the towel and insisted that Bob & Suzy get Michael on the phone for me. I explained to Mike that I couldn't bare another night of the pain and that I simply wanted to end it all. Within a few hours he was on a plane headed to Carlisle and on his arrival things miraculously began to change... he spoke to my oncologist at length, several tests were postponed (with the exception of a blood transfusion), Hospice was called in and arrived that very afternoon. I'm not sure why those simple steps caused such a change but they did - maybe it was partly the magic of having someone who loves you deeply take charge and begin to fight your battles for you (including Kelley, my daughter, who arrived 1 1/2 days later) or just the knowledge that they would do whatever they felt was necessary, including several personal meetings with Dr. Peroutka, my oncologist. Whatever it was, it worked.

As I sit here now I can tell you that I now have 24 hr. home care due to an amazing decision made when I was 50 years old to purchase a top of the line "Long Term Care" Insurance Policy at a time when Long Term care was just hitting the media. Since I am now 70 years old that means I have been paying premiums steadily on an annual basis for 20 years with only one increase in the premium in all of that time. AND, because of that decision to purchase the top of the line policy I have at my disposal $209 per day to use for all in home care needs.  When my children and I met with the the agent recently we were absolutely amazed at what that is now providing me.  I am, and have always been, a "planner" and this has been one of the best plans I ever put into action.  I wish I could tell you that you will never need it, but the chances of that are nil since the rate of disease has increased exponentially over the years and we must all face the fact that we age, with the exception of a sudden unexpected accident for which we can make no predictions.

Well, enough about that... I must tell you several things that have changed the attitudes and maturity level of my children.  For one thing, the mere fact that they now both have a child of their own and are watching their development has made a tremendous impact on them. Add to that the realization that their mother is facing stage 4 metastatic breast cancer with all it's pains and side effects has given them a sense of responsibility they never had before - it is, and has been, a life-changing event. Life is no longer all fun and games; it has been replaced by responsibilities that have their own rewards, both for me and for Kelley and Michael. For me these are more personal and spiritual but simply enjoying time with my most supportive friends (and I have many, both near and far, some as far away as Brazil, New Hampshire, California, France, New Jersey, North Carolina, Colombia, New York, etc.), or doing some artwork or simple gardening is enough for the present.  I will send you one picture of my wonderful setting here on Ridge Drive in Carlisle so that you can see that life has some gorgeous rewards right here in my own back yard.

More to come - blessings to you all.

Nancy

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Michael the "amazing"

 


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Kelley & Hannah with her special "house"

 


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My backyard including spring pond and all kinds of flora and fauna

 

CARTAGENA

Cartagena
Cartagena de Indias is a beautiful old city facing the Caribbean sea on the west, about a 1 hour drive north of Barranquilla. The city was founded at the beginning of the 16th century by Spain. Because of its rapidly increasing fame and wealth it became a target for pillaging and plundering. (What, might you ask is the difference between the two? The best I could decifer, according to Webster's Third New International 10 lb. Unabridged Dictionary, is that there is no difference - both refer to the taking of goods and valuables by violence and force, no mention of rape or beheading.) At any rate, after all this pillaging and plundering the city fathers of Cartagena, supported by the Spanish, decided that it might be wise to construct a series of walled compounds, castles and forts around the city to protect their cash cow (Cartagena was amassing a fortune in gold and silver as well as other valuable goods.) This, then, is why the city is today so spectacularly beautiful. The wall which surrounds the city now has numerous areas for walking or enjoying a drink or two or eating establishments where you can sit and enjoy the sunset (or sunrise if you are so inclined). The many noble houses that were built by the aristocracy within the city proper have been turned into grand hotels, restaurants and what my son refers to as "boutique hotels" - small establishments so gorgeous they take your breath away, always with an interior open-air courtyard (see some pictures below). 
We didn't stay in the city, however, because it was Christmas/New Years/and school vacation time, thus the prices of everything were at least three times what they usually were.  Instead we found a lovely brand-new building outside the city limits right on the sea with all the amenities you might want...pools, spas, ocean-side covered umbrellas, para-sails, etc., etc.  We were able to leave Chloe with Clau's parents, a daytime "Nanny" and her new God-parents so Clau & Mike finally had a night or two to themselves.
We used that time to investigate Cartagena - (beautiful stores and boutiques) - take a horse-drawn carriage (carruajes) around the city and just generally relax, exploring the grand hotels and the boutique hotels in anticipation of visiting at another time when the prices were not so high. We will also make it a prerequisite to visit some of the castles and forts next time.
Lovely, but when we returned to our hotel we discovered that the bathroom in one of the bedrooms was seriously clogged with septic smells, an indication that they are building these places too quickly with limited attention to the necessities, not a very wise move.  That's a shame since the area is gorgeous, but by moving too quickly they are taking shortcuts that will only need to be corrected eventually. In my humble opinion, Colombia, and Cartagena in particular, are on the cusp of a major tourist boom. Yes, there are police but I saw no guns and it appeared that their major function was to keep order during the holiday week.
All in all it was a lovely side trip and one I would take again willingly.  We returned home with no "incidents" the following Monday and thanked our lucky stars that we had been able to visit such a unique country.

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At our hotel on the beach

 


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Living area at our hotel

 


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The whole complex

 


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Interior of a boutique hotel

 


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Buying some jewelry

 


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Street sign

 


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Horse-drawn carriage ride around town

 


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Drinking out of a wine cooler

 


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Happy we came...

 

COLOMBIA

A BAPTISM and a NEW YEAR

The Colombian people are very family-oriented and very religious (at least the ones that I met). Both a baptism AND New Years are totally family celebrations and we were there for both.

Chloe, Mike and Clau's little girl, is now 1 year old, which seems to be the age at which they are normally baptized, not as infants as we Americans seem to do. Last year when Marjorie was here visiting after Chloe's birth she immediately began embroidering her baptismal dress.  Hopefully you can get a good look at it in the pictures. We knew that this was going to be a very special event so we took along what we thought were appropriate clothes. Bob even bought a "Tommy Bahama" linen shirt for the occasion! (he looked especially spiffy :>).

The ceremony was held at the Barcha's local Catholic church but the Padre (who seemed to be a personal friend) had come down from Cartegena to officiate. Even though it was conducted entirely in Spanish (of course!!) I was able to understand the general import of his words and I felt completely part of the baptism. The Godparents each spoke and the grandparents (that's me!) were asked to make the sign of the cross on this dear little child's forehead. The parents were each spoken to separately by the Padre with what I believe were instructions and blessings. For me, it was a very moving moment to watch my son standing there in front of him listening so intently to his words (Michael does understand, and speak, a bit of Spanish). Chloe was lowered to the baptismal font where she was finally annointed with God's blessing followed by lots of lots of pictures. 

I must point out, however, that right in the middle of this sacred ceremony Uncle ----'s cell phone rang and he answered it! and worse yet, spoke to the person on the other end of the line.  And this happened not once, but twice.  Just proves that there are inconsiderate people no matter where you go who are not exactly known for their good manners.

I have felt, since I met her, a very special bond with Marjorie. I am now part of that family and they have embraced me.  Before we left she took me into a small chapel within the church and prayed with me and for me. I couldn't understand her actual words but in my heart I knew she was asking God to protect me and grant me strength through my ordeals with cancer.  If ever I felt a direct connection to God it was then. After that we all went back to Marjorie and Eduardo's and watched the children all run around in circles and enjoyed a light lunch.  After all, the kids had all sat still for close to an hour so they were ready to enjoy themselves. A very special day.

Now on to New Year's eve...  Contrary to what you may believe, New Year's Eve is not a big bash with friends.  It is, once again, a family affair and also has religious undertones.  One of the extended family members had cooked a turkey and a ham and Marjorie's cook had prepared some side dishes. Dessert was contributed by one or two other family members.  No one actually arrived until around 10:00 p.m. - obviously the ideal day to take an afternoon siesta. Time was spent talking, dancing, and eating - some drinking, but not much, and once again the children were included. At midnight there was the traditional kissing and wishing of Feliz Ano Nuevo. Then we began to see people walking up or down the sidewalk carrying or pulling luggage behind them.  Tivi explained that it is an old custom to "take a trip" at New Year's so not to be left out, we went and got our suitcases and joined the "travelers".  I don't really know the meaning of this custom - maybe it just signifies that these people would like to take a trip.  It was kind of funny though seeing them all dressed up in their high heels (Colombian women love their high heels!) dragging suitcases up and down the neighborhood. It sure beats barfing into a paper bag after ingesting several bottles of Vodka or the drink of choice and nursing a brutal headache the next day.

I need to explain, however, that the big "let it all hang out" celebration in Baranquilla and many other cities and towns in Colombia is CARNIVAL. It begins in earnest four days before Ash Wednesday when an actual edict is read out declaring that everyone must party. And they take this seriously; it sounds to me like every Colombian of sound mind and body dons traditional costumes, grabs their instruments and dances their hearts out for four consecutive days with very little time out for sleep. The Baranquilla Carnival is actually considered on a par with Rio de Janeiro's but without the sex.  From what I have been told and what I've read Baranquilla's has more authentic culture (it was declared a "Masterpiece of the Oral and Intangible Heritage of Humanity" by UNESCO in 2003) than the anything goes attitude of Brazil's. In Baranquilla families who have been participating for generations perform the traditional dances and music while others prepare the spectacular floats for the Grand Parade. And this grand celebration is when the drinks flow freely - really freely, according to my son who has participated,and imbibed (meaning he drank his fair share), in Carnival there.

So there you have it, one more chapter to go which will be mostly about our two day getaway to Cartagena.

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Chloe's Baptism

 


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Chloe, Clau, Father ? and Mike

 


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Blessings for Chloe

 


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Marjorie, Eduardo & Nancy

 


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Instructions to the mother (Clau)

 


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Instructions to the father (Mike)

 


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With Mike and my granddaughter Chloe

 


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I love you Chloe

 


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Sweet shot of us 

 


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Lovely!

 


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Marjorie & Nancy

 


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I can clap!

 


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Barcha's house - water runns down the wall

 


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The two grandmothers

 


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And a grandfather

 


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Chloe and Alana

 

Chapter #2 - MEET & GREET

COLOMBIA - Chapter #2
Meet and Greet

So let's get on with it...We arrived in Barranquilla about 4:30 pm and began our intake process which consisted of showing our Passport and declaring what amount of $$ we were bringing into the country, followed by a scan of our luggage, which as I mentioned before was already at the airport there.  However, figuring out where they had stashed it was another hassle.  Claudia once again came to our rescue by illegally entering the secure luggage area and got a thorough talking to by the security police.  (She's very sweet and pretty but obviously that doesn't always work-or maybe it does. Otherwise they might have hauled her off to jail.)  We finally located it and were released into the arms of my son, daughter-in-law, and my granddaughter.  Phew!

We loaded up and then drove to Clau's parent's house, (Marjorie & Eduardo Barcha's), where a Colombian 5-pc. group of musicians were waiting for us plus many of Clau's relatives. It was quite a greeting - lots of introductions, hugs, attempts at sharing information and settling in, then dancing and a wee bit of drinking. (:>)  The following day I attempted to construct a "family tree" so that I could keep all the names straight - sort of like reading "100 Days of Solitude" by Gabriel Garcia Marquez, who is Marjorie's cousin.  He has so many characters in the book that your head is reeling by the time you get to the end.  He wasn't there though - he lives in Cartagena but spends a lot of time abroad.

I don't know when we went to bed but I do know that I slept very soundly.  Now a bit of social etiquette:  the Barcha's have a cook and a housekeeper, and Mike and Clau were able to find a temporary "Nanny" who turned out to be a God-send.  Since Chloe is now on her feet and there were people and children all over the place she was running here, there, and everywhere.  I was exhausted just watching her.  And the really different custom/necessity regarding bathroom etiquette: you do not flush paper down the toilet; you wrap it carefully, (kind of like a little toilet paper present), and deposit it in the small garbage can beside it.  That took some getting used to but I'm pretty sure Bob cheated (he finds it hard to follow rules... )

In chapter #3 I'll tell you about Chloe's Baptism and our trip to Cartegena.  Re my cancer symptoms, each day I felt better and better.  No annoying side-effects and no colds or exhaustion.  Mike & Bob ended up with what Mike calls the "gripe" caused by going in and out of air conditioning.  It was just a major cold with the sneezing and uncomfortableness that you might expect.  I, however, had none of that. :>)

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Bob. me. my son

 


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Is Clau going to drink that?!!

 


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Columbian musicians greeting us 

 


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Preview of our arrival in Barranquilla

 


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Marjorie attempting to teach me to dance

 


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Our bedroom at the Barcha's

 

COLOMBIA Chapter #1

COLUMBIA - THE GOOD THE BAD AND THE UGLY/BEAUTIFUL

CHAPTER #1

As most of you know, Bob and I were scheduled to go to Colombia (So.America) on Dec. 27th to meet my daughter-in-law and son and their 1-yr. old daughter in Baranquilla, where Claudia is from, for eight days.  We were staying with her parents there. This chapter is the story of our trip TO Colombia and doesn't include alot about my cancer condition.  If that is your main purpose in reading these blogs I suggest you skip ahead to Chapter #2 or #3.

In order to get to Baranquilla you have to fly from Harrisburg to Dulles AP in DC, then to Miami and finally on to Colombia.  Sounds not too complicated, doesn't it?  The only trouble is you have to leave here (Harrisburg) about 4:00 a.m.(which means getting up about 3:30 am) and then wait for your connection in DC. HOWEVER, our plane in DC had the infamous "mechanical" problems which caused us to miss our connecting flight in Miami. And there began our first totally frustrating experience with AVIANCA (the Colombian Airline), which turned out to be an eye-opener in how the Colombians operate -- SLOW, IN FACT MORE THAN SLOW, MORE LIKE AT A SNAIL'S PACE.  We were trying to re-book for the same flight the next day but I have to tell you that it took at least 3 hrs. to get that done and then only with Claudia's help by phone directly to Avianca from Colombia. The next day it was another mess and although we finally got on the flight we apparently had been booked in someone else's seats and we were more than lucky they didn't toss us off right then and there. The gentleman whose seat I had taken graciously moved back near the bano (bathroom) and ended up offering us any help that we might need (he spoke English) and couldn't have been more accommodating. All in all, I found Colombians to be extremely friendly and helpful.

So our trip TO Baranquilla became a two-day odyssey frought with little sleep, frustration and exhaustion.  And I should add, our luggage which contained my medicines and clothes, all flew happily on to our destination and was there waiting for us when we finally arrived.  We had ended up scrounging a room at the Miami airport hotel, even though we were told they had only singles available.  I pulled out my tears and cancer story and we were able to snag a conference room with a Murphy bed for the night. (My motto: use it when you need it!)

The next day we had a leisurely breakfast in the hotel dining room, which did help to calm us down a bit. And then we waited, and waited, until our 2:00 pm flight.  So that is our story of our trip to Colombia, from there it got a lot better so watch for Chapter #2.

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Avianca representative trying very hard to get our reservation figured out

 


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Columbian musicians greeting us 

 


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Preview of our arrival in Barranquilla

 

MONO PRINT - "Marsh Marigolds and Forget-Me-Nots"

PORT - NOW GONE!!!

Phew! The damn port is now history, thank goodness.  There have been many theories regarding why it "eroded" so seriously... too close to the surface, a result of the Avastin, poorly put in, loss of weight, etc.,etc.  But as the patient who had to deal with it on a daily basis I believe it was poorly inserted because it has been a problem since day one, always positional in that I would have to be sitting a certain way to get it to work. When I was sent in for transfusions several months ago it wouldn't work at all and lately it had become so painful that there was no way I was going to allow anybody to stick a needle in there! So that is one story over and done with.  Now I just have a little healing to do.

Other than that here is what is going on:  Christmas gifts being purchased and sent, windows now being put in so there are worker-guys here 8:00 - 4:00, decorations (minimal) going up, books being made, Christmas cards also being made, etc., etc. and finally hot-weather clothes being chosen and ironed for our trip to Colombia on the 27th.  Below is the mono-print I did for Claudia's mother.  I think it turned out pretty well since I had never done one of these before.  You actually paint on glass, then run the plate through onto watercolor paper. It's quite a process.

Between all this and my many doctor's appointments I'm slowly inching toward Christmas and then Colombia - something definitely to look forward to.

Blessings to you all!

Nancy

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MONO PRINT - "Marsh Marigolds and Forget-Me-Nots"

 

DOGGONE IT!

From: Nancy Grim <wolfwomen@me.com>
Date: December 1, 2010 8:31:13 PM EST
To: "Posterous (wolfwomen)" <post@wolfwomen.posterous.com>
Subject: DOGGONE IT!

DOGGONE IT!

Today was the important appointment with Dr. Emmens at Johns Hopkins.  That is, it was supposed to be an important appt. except for the fact that my oncologist here neglected to call, or fax, the needed records so she was unable to evaluate my scans or discuss Dr. Peroutka's recommendations for a different chemo drug.  I explained as best I could what the scans had shown and what Dr. P. had said, but I'm no expert and I was extremely disappointed that the necessary papers and explanation had not reached Dr. Emmens for the appt. 

Dr. Emmens will call Dr. Peroutka tomorrow to get the needed info, but her preference would be that I drop the Abraxane and Avastin altogether and try Xeloda which is apparently a whole different type of drug.  Xeloda is taken in pill form but I will have to go in once a month to get an infusion of Zometa (which I have been taking all along - this drug is a support medication to help reduce complications such as fractures & pain produced by bone metastasis).  I believe I will take the Xeloda twice a day after meals for two weeks, followed by a week "off" and then another week on the pills with an infusion of Zometa at the end of the week. Another CT scan will be done following that, as well as a bone scan.  This is a different protocol than Dr. P. had.  Oh, yes, and I plan to have these done at Hopkins from now on.  For a large hospital they seem to be very well-run and the majority of the staff are very friendly and helpful.  

Just thought I would bring you up-to-date.  I'm sure I'll have more to report soon.

Nancy

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Hannah & Chloe batheing together


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Clau, Mike & Kelley


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Some of the jokes are a little hard-to-take


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Kelley's Thanksgiving table, turkey resting at the end


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Mike snoring his heart out


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Heading out


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Dinner at Ye Olde College Inn

DOGGONE IT!

DOGGONE IT!

Today was the important appointment with Dr. Emmens at Johns Hopkins.  That is, it was supposed to be an important appt. except for the fact that my oncologist here neglected to call, or fax, the needed records so she was unable to evaluate my scans or discuss Dr. Peroutka's recommendations for a different chemo drug.  I explained as best I could what the scans had shown and what Dr. P. had said, but I'm no expert and I was extremely disappointed that the necessary papers and explanation had not reached Dr. Emmens for the appt. 

Dr. Emmens will call Dr. Peroutka tomorrow to get the needed info, but her preference would be that I drop the Abraxane and Avastin altogether and try Xeloda which is apparently a whole different type of drug.  Xeloda is taken in pill form but I will have to go in once a month to get an infusion of Zometa (which I have been taking all along - this drug is a support medication to help reduce complications such as fractures & pain produced by bone metastasis).  I believe I will take the Xeloda twice a day after meals for two weeks, followed by a week "off" and then another week on the pills with an infusion of Zometa at the end of the week. Another CT scan will be done following that, as well as a bone scan.  This is a different protocol than Dr. P. had.  Oh, yes, and I plan to have these done at Hopkins from now on.  For a large hospital they seem to be very well-run and the majority of the staff are very friendly and helpful.  

Just thought I would bring you up-to-date.  I'm sure I'll have more to report soon.

Nancy

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Hannah & Chloe batheing together

 


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Clau, Mike & Kelley

 


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Some of the jokes are a little hard-to-take

 


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Kelley's Thanksgiving table, turkey resting at the end

 


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Mike snoring his heart out

 


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Heading out

 


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Dinner at Ye Olde College Inn

 

SCAN #3

So, It has been almost a year since this whole bloody trip began.  When my cancer was first discovered I had, in addition to a sojourn in the hospital for about 5 days because of really, really bad pain, a complete set of scans done.  Those scans showed cancer in my liver and throughout my bones - metastatic Stage 4 breast cancer. Since then I have had two more scans. On the first of those there was no change in the progress of the disease. On this last one, however, it showed an increase which is not good news. 

I met with my Dr. Peroutka, my oncologist here, on Friday and this, then, is her recommendation.  First of all she said that it is not unusual for a cancer patient to build up a resistance to a chemo drug (in my case, Avastin).  In fact she spends most of her time altering chemo drugs for patients because they become ineffective over time, but she had hoped that I would not experience this for awhile. She has suggested that I switch to a drug called Xeloda which is given twice a day in pill form right after meals. My regimen would be one week of Xeloda then one week off then another week on plus the addition of two meds that I had been taking for help with blood counts and bone health (Abraxane and Zometa); those two drugs are give intravenously so I would have to go in to the office periodically to have blood counts tested and to get the Abraxane & Zometa. HOWEVER, she and I have opted to speak to Dr. Emmens at Johns Hopkins before beginning just in case she has another option for us to consider. Dr. Peroutka has great respect for Dr. Emmens and the work she is doing to fight cancer so it makes sense to keep her informed. She can be considered part of my team which I believe is wise.

The most problematic part of changing chemo drugs is the possibility/probability (at least in the beginning) of new side effects.  Although for some the side effects can be minimal, it is a highly personal reaction and it's just a matter of “wait and see.” So there you are.  Nothing is going to happen until after Thanksgiving.  I have a call in to Dr. Emens so I’m hoping I will hear from her soon.

There are a couple of pictures here taken during a trip to New York City with our friends, Ky & Tom Colestock. We took a walk on a really lovely day on the converted Elevated Train Tracks between Gansevoort St. and 20th St. on the west side of Manhattan (between 10th & 11th Aves.) I believe the plans are to eventually extend it to 34th St.  If this interests you you can read about it at: http://www.thehighline.org/  It's an amazing experience with scenes of NY from this elevated track planted with native grasses, plants, shrubs and trees, plus places to sit and just chill out or read a book, etc.  WELL WORTH THE VISIT!

Have a very HAPPY THANKSGIVING!

With best wishes to you all,
Nancy

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City-scape from the High Line

 

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City scape #2

 

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On the High Line

 

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Building seen from the High Line

 

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The colors of fall

 

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Elevator up to the High Line

 

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More city-scapes

 

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Entrance to the Standard Hotel at the lower end of the Highline

 

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Another streetscape

 

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Sculpture garden at MOMA