FINALLY - AN UPDATE ... More pictures to follow

FINALLY - AN UPDATE!!!

Seconds go by, then minutes, hours, days and soon weeks and months. I can feel my internal time clock ticking away. And all too soon I want to shout STOP! at the top of my lungs. It isn't fair; to be a cancer patient means appointments and more appointments means less time to do the things that I really want to do. And then you throw in the normal aging process and you have even MORE appointments. Ugh. Do I sound frustrated? Well, I am.

So first of all, I apologize for being out of the loop for so long. Believe me, I would much rather be writing in my blog than running all over the place visiting doctors and trying to solve problems or keep up-to-date on filing, housework, gardening, etc. To answer the important question, I did not qualify for the vaccine trial at Johns Hopkins so I am back to square #1. I am still taking my original chemotherapy drugs in the same protocol as before: once a week for three weeks followed by two more weeks of the same schedule then a week off. If my blood counts hold up these weeks are consecutive, if not, I can miss a week and that sets me back a bit. My fourth week I have off and then I start the whole process over again for two more months. (I know - it gets confusing!) At the end of approximately three months I am scheduled for scans. It is the scans that show whether the cancer is spreading or holding it's own. That's called "nail biting" time. So far my scans have been relatively good but I am due soon for another go-round. (I think I'll paint my nails a real lucious pink color so I won't be tempted to chew them down to bits...)

That's the story as far as my Cancer goes. If you feel really ambitious you can check out my Travel blog in a few days to see how I love to spend some of my time. (I think I am a travelaholic, which could be worse, you know.). I get on a plane with no palpitations of the heart (meaning scared to fly) and I always come back feeling happy and fulfilled. Lucky me. 

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A happy Hannah

 


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Hannah's "gang" gathered for dinner

 


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Typical French Quarter corner

 


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Thought you might like to see a few pictures so it isn't all doom & gloom.  Here is a Troia family portrait: Hannah, Kelley, Tim, Charlotte & Wilbur

 

A BUSY COUPLE OF DAYS

A BUSY COUPLE OF DAYS....

I seem to have less and less time to myself these days, which creates feelings that can only be described as frustrating.  I try and try and try to get my house in order, and my garden cleaned up, and all my appointments scheduled and kept track of, but no matter what I do I end up at the end of each day with more things on my list for the following day than I had for the present one! When something happens unexpectedly, as it did yesterday, I find a whole block of time taken up which puts me behind and screws up my whole carefully planned out schedule.

Case in point: I woke up yesterday morning with some pain in my chest and right side.  After talking to the nurse at my oncology practice we decided that I should go to the EMERGENCY room at my local hospital to be checked out, which I did.  When someone comes in complaining of chest pain they are given an EKG right away.  That turned out fine - no signs of impending heart attack, etc. but after that I spent the rest of the day getting poked and prodded, x-rayed and evaluated and, finally, ultra-sounded (gall bladder - no signs of any problems there).  I was released at 10:00 p.m., with all test results in hand, so that I could make my appointment the next day at Johns Hopkins.

During those long hours in ER I had a front-row seat. It was an exceptionally busy day/evening in one of the most stressful sections of the hospital.  Besides a full waiting room (8 hr. wait), there were also numerous EMS teams dropping off patients with varying problems every half hour or so.  One of those patients was a 19-year old young man who was no doubt high on drugs.  He screamed on and off for a good hour pleading with the nurses and doctors not to inject him.  He sounded like he was in serious pain but I'm pretty sure the staff was just trying to calm him down.  I felt so sorry for him -- and the women and men who were trying to help him.  In the room next to me was an older woman, also high on drugs, who had a long history of addiction and had apparently tried to kill herself.  There was constant checking of charts, blood being drawn, evaluations done and meetings with the doctors. The phones rang constantly.  When I was finally released the stillness of the evening seemed unreal compared to the cacaphony of sounds I had been bombarded with all day.

Once home I collapsed into bed so that I could be up and on the road to Baltimore early the next morning.  We made it to the Kimmel Cancer Center at Johns Hopkins right on time which was pretty amazing since just navigating through the huge complex of buildings was a feat in itself.  I simply asked various people where it was and how to get there and everyone was very kind and helpful.  My experience with check-in and initial taking of my height, weight, blood pressure, etc. was fine and within minutes I was face to face with the doctor.  She had all of my records and was able to tell me pretty quickly that because of my liver levels I was not at present a candidate for her vaccine trial.  When I asked her what could be causing the abnormal levels she said that it could be alcohol consumption and/or the chemo.  We then talked about other options for fighting my cancer.  What I didn't know previously was that Dr. Leisha Emens also takes patients like a regular oncologist which has caused Bob and I to consider switching from Andrews & Patel to Dr. Emens at Johns Hopkins.  We will wait to make a decision until after she has a chance to talk to my present doctor at A & P and to access what the alternative treatment might be.  Part of my leaning toward Dr. Emens is that she would be able to keep a close watch on my liver and if there was a significant improvement I would be able to join the vaccine trial.

So that is a brief account of two days in the life of a Stage 4 breast cancer patient.  Now back to trying to get my house in order so that I have more time for the things that are most important to me: my family, friends, reading, art projects, a small garden and a warm and cozy fire come wintertime.

Now on to my chemo treatment this afternoon - Phew!

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Waiting in reception at the Kimmel Center

 


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Bob and Andy Buerger post appt. with Dr. Emens

 


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Johns Hopkins/Kimmel Cancer Center is somewhere behind the main building

 

THREE FACES OF NANCY

"THREE FACES OF EVE"/NANCY
(The "Three Faces of Eve" was a motion picture based on a true story about
a woman suffering from multiple personality disorder.  Joanne Woodward won
the 1957 oscar for her performance of the afflicted woman. My three faces are below.)

It has been quite awhile since I have posted any information on my blog about my experiences with Stage 4 Metastatic Breast Cancer, so I thought it was time for an update.

I am now on my fourth round of chemo with very minimal side effects - occasional slight nausea, bloody noses often in the a.m., and increasing "chemo brain," which bothers me the most.  But gradually I have been learning more and more about this disease and its long-term problems and prognosis, which is often danced around or just simply not discussed by my present doctor.  I'm becoming increasingly pro-active because I have found that you really do have to devote a lot of your precious time to managing the disease and determining what is right for you.  Individuals are often very different in how they cope.  I am one who doesn't want any bullshit; I just want my doctor's best guess about how long I am likely to continue with the few side affects that I am now experiencing and what the "dangers" are as more and more chemo is pumped into my body.

I am now of the opinion that it's not necessarily the cancer that kills you, it's the chemo.  The longer you are on it the more the risk of heart problems or strokes or damage to your organs - not a pretty picture and not one with a very promising outlook. With that said, my friend, Andy Buerger, whose sister passed away last year at the age of 45 of advanced breast cancer, told me about a vaccine trial that is being done by a doctor at Johns Hopkins.  This trial is investigating the efficacy of utilizing vaccines made from gene-modified tumor cells to help the body build an effective immune response to kill tumor cells.  I am aware that a similar trial is taking place in Cleveland as well.  I have an appointment this Wed. with Dr. Leisha Emens at Johns Hopkins to discuss the trial and to determine whether I might be a candidate for inclusion.  If I am, my understanding is that I would receive a small amount of a chemotherapy drug while participating. It would, however, require extensive travel weekly since the hospital is in Baltimore, a 2+ hour trip from Carlisle.  I'll write more about it after I have met with Dr. Emens.

I want you all to know, though, that I am feeling great under the circumstances.  I am busy trying to pare down some of the "stuff" that I have accumulated after living here for almost 18 years and I am becoming much more careful about how I spend my days. I have learned what is important to me and I jealously guard the time I spend with friends and family.  And you'll be happy to know that my sense of humor is in tact (after all, laughter is truly the best medicine, if only we could bottle it).

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#1 - With my wig

 


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Wigless, just white/grey fuzz

 


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Baseball cap - much cooler than the wig and definitely my favorite!

 

New Blog: COMPLETED PAINT JOB AND TRAVEL PLANS

UPDATE: NEW PAINT JOB AND A TRIP TO PROVENCE...
 
Soooo, included here are a couple of pictures of my completed sponged walls in our kitchen, dining area.  I love it!  The color is a Tuscan terracotta/orange and the trim is green - it looks super with the bricks in the fireplace and the rug.  It certainly brightens the room.
 
Next big news is my upcoming trip to Provence with two friends from my yoga class.  We found a darling little house in a small village near Aix for only $600 a week (see the link to the website here:  
http://www.georgeannebrennan.com/village_house.php  ) so we figured we just couldn't pass it up!  We leave in two weeks and we'll be there for 16 days.  We plan to do a lot of people watching - sitting in cafes sipping wine and just enjoying our freedom.  We also want to visit farmers' markets and flea markets, of which there are many.  I am planning to take my laptop and will keep a journal our many adventures.  Don't know if I will be able to post them from there since I've heard that WiFi access is very limited, but I will get them up on my Travel blog at some point.  I'll send a link for that in case you are interested.
 
I don't know how many of you know how much I enjoy traveling.  I have been to many countries - 13 of them on a 3 1/2 month shipboard trip I took in 1993 with Semester at Sea, a program designed for college students in which they took courses for credit while we were crossing the Pacific and returning by way of the Atlantic with many bodies of water in between.  They take some adult passengers if they have not filled the spots available on board (and we were welcome to participate in all the classes or activities that the students were involved in).  I was one of them - it was quite a trip.  But since then I have been to France, Italy, Switzerland, and now France again (Provence).  I love meeting the people and just seeing how they live, and there are a lot more countries out there that I would like to visit!
 
As far as my chemo and condition is concerned, last week they couldn't do the chemo because my blood counts were too low.  I am scheduled for it this week and, hopefully, they will have "recovered" since then.  I have some minor aches and pains but I'm not sure if they are related to the cancer or not.  I really won't know that until some scans are done after my next three chemos which won't start until I get back from France (June 5th).  Since I meet with my oncologist this Wed. I'll ask her what she thinks.

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Sponged after applying paint

 


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New fridge too!

 


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And a New Hair-do - WIG!

 

THE TRUTH OF THE MATTER

THE TRUTH OF THE MATTER
 
So now my hair is falling out and I have decided to get my second wig in four years.  That's a bummer.  I know in my heart that while I may have a genetic weakness for cancer (my Mother had Myeloma, my brother died of Leukemia).  (It's pretty interesting what does and does not get passed on...)  Still my own eating and drinking habits may have made me more susceptible to the disease as well as my general lifestyle.
 
People keep saying "but you eat right" and I am here to tell you that I do not eat right and I should!!  I know I would feel better if I ate all organic, more greens and fruit and no alcohol, sugar, or fats, but I do not have the discipline to do that.  I love a glass of wine and ice cream and butter on my toast and to give them up entirely would remove some of the pleasure that I get from life.  The answer for me, I believe, is to eat and drink those things moderately.  We have enough to contend with with the air we breathe and the chemical additives in much of what we ingest. And don't think you don't get them, you do if you go out to eat on a fairly regular basis.  Many of us would be appalled if we saw what goes into those meals that we order at our favorite restaurants.

And then there is the matter of my lifestyle, which is bizarre.  I often get up at 9:30 or 10:00 because I have gone to sleep the night before well past 11:00 and sometimes even midnight.  That means that my breakfast is eaten around 10:30, lunch around 2:00 or 3:00 and dinner usually at 8:00 or even 9:00 at times.  I didn't always do this, but I have fallen into my husband's pattern.  That seems normal to him.  To me it means you are literally missing half of the day when you should be most productive. With the return of this disease and the limits it is putting on my life I am very seriously considering altering this, to me, unnatural routine. And if I am going to continue to tend a garden, especially in the summer, I almost have to get up early just to take care of my plants before the scorching sun fries me and them.

I wish I could convince my children to do the same with regard to eating and drinking.  Moderation would be so beneficial and eating healthy, organic meals would remove many of the chemical additives that they probably now eat and drink. But that takes commitment and due diligence (Read the labels! Don't be taken in by the great advertising scheme to make us buy products that are laden with sugars, salt, and fat.) This damn disease is not fun and I am not happy that I am having to go through it again.  The thought of Kelley or Michael, or, God forbid, Hannah or Chloe having to face it gives me nightmares.  I have many things that give me great pleasure, it's not all about food and drink - honest.

A GOOD OVERLOAD

OVERLOAD...but a good overload
 
 
I am, admittedly, a person who can't tolerate confusion very well.  I seem to be able to stand just so much and then my brain shuts down.  It's not a new problem; I've had it all my life.  With that said I can tell you that having four painters in my house for going on two weeks now is pushing me to the edge. Added to that were visits from Bob's daughter and her two dogs (one of which is the cutest little puppy ever!), a brief visit from my two nephews and the favorite ex-wife of my brother, Barry, (which was a real treat), a broken refrigerator at our rental house which needed to be replaced, a chemo appointment, gardening chores and "stuff" everywhere!!!
 
The visits were the treat.  I loved having Dee and "the boys" here (the boys being the dogs) and along with them his other daughter, Suzy, and her son Mason.  In fact we had dinner at Suzy's after Dee arrived - Bob prepared the salmon and salad, which was excellent - and Suzy did the rice, broccoli and veggie dips.  It was wonderful for me because I did nothing!!  
 
As far as my condition is concerned I am feeling pretty darn good.  My appetite is returning and I am hoping to find a good nutritionist who can help me with my diet.
I've been thinking positive thoughts so that I can go to Provence with my two friends in exactly ONE MONTH!  I've made all the arrangements with the exception of our rental car so everything is pretty much in place.  I can't tell you how much I am looking forward to this trip so you can expect some interesting blogs come the beginning of June (or sooner if I decide to take my laptop with me).
 
One day later... My visit with the oncologist yesterday went very well and we mapped out a plan for my chemo appointments up until I leave for Provence.  She is writing a letter for me to take along explaining my condition and the need for me to have the Oxycontin with me, so I think I am all set in that respect.
 
And today is sponging day in the kitchen.  I chose a Tuscan orange color for the walls which the three painters and I are sponging to create a mottled effect.  It is turning out much better than I expected so my kitchen is going to look very different.  Pictures follow...  

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Dee and Bruder - Moto's new "brother"

 


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This is Moto - a Leonberger breed

 


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Bruder again posing for the photographer

 


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Sleepy Bruder 4/18/2010

 


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Drew, Ginny, me, Bob and Matt - April 2010

 


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Sponging the dining area

 


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Finally on the last couple of walls

 

A SHOT IN THE ARM

A (Figurative) SHOT IN THE ARM

Easter has come and gone and with it my daughter, her husband, and their 3 1/2 year old daughter, Hannah AND my son, his wife, and 5 month old baby, Chloe (+ Nola, their sweet little dog).  Was it hectic?  Did we laugh and have a good time?  Did Michael do most of the cooking?  Did Bob make his now famous hamburger stroganoff?  A resounding YES to all of those questions.  Hannah found all 12 of the eggs that we had hidden and she and I "painted" some wooden placemark eggs that turned into a glitter-mess but a good time was had by all.

On Monday Kelley and Michael took me to chemo so they got a chance to see what it was like for me and I, of course, was happy for the company.  Next Monday is my week off (I do three Mondays of chemo, then have one week off so that my blood counts get a chance to "recover.")  And finally they all left Tuesday morning.  I've been recovering since :>)  And that, dear friends, is the kind of shot in the arm that I need and want.  Nothing can make me happier than to have them here, laughing and having a good time.  And Hannah and Chloe are so darn awesome I can hardly stand it.  Hannah, in particular, is busy, busy, busy running here, playing with my old Madame Alexander dolls, running there, finding new things to stimulate her active little mind.  Chloe, on the other hand, spends most of her awake time smiling and gurgling and she LOVES the ceiling fans in the various rooms.  She seems mesmerized by them.  So darn cute! 

So this time you get some pictures...

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Claudia, Chloe & Hannah

 


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Chloe & Daddy

 


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Hannah finding her eggs

 


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Kelley, Hannah & Grammy

 

TURNAROUND AND COPING

TURN AROUND...

I have finally restarted my chemo, now at the Harrisburg office of Andrews and Patel where I feel I am getting better, more personalized care.  It takes longer to get there, but I really do think it is important.  And I can report, happily, that it seems to be going well.  The only snafu has been my hemoglobin and need to get transfusions, which becomes a major problem because my "port" (the implanted device which enables chemo, blood tests, and transfusions to be done directly into my vein in my chest rather than poke me in the arm over and over until my poor veins can't take it anymore) does not work right.  I don't know what happened, but I have to sit in a certain position or even keep my head turned in a certain way.  That said, when I went for a transfusion this past week the nurses just couldn't get it to work right and finally had to do it through my arm vein instead and it ended up taking 5 1/2 hours!  5 1/2 hours of sitting in a recliner watching blood drip into you is BORING!

Tomorrow will be my second chemo and unless my white counts are low, I expect to be in and out of there in about 1 1/2 hours which isn't too bad.  I am finding that after the two days following chemo I begin to feel better and better and my appetite improves.  I had no incidents of pain this past week (YAY!!) so I am relying on Ibuprofen and Tylenol to keep me human.  Enough about that.  I have some other observations that are creeping into my little head which you may or may not want to read about...

SOME SUGGESTIONS FOR COPING

I have felt decent enough lately to actually do some shopping (online) and planning for some household sprucing up that needed to be done.  The simple task of buying something new, (hopefully flattering), and actually putting it on and wearing it is more important than you might think, especially when you look in the mirror each day as I do and see exhaustion and tinges of depression sneaking in. We need to get dressed up sometimes and know that life is not all jeans and a sloppy sweatshirt.  And sometimes we need to get out a china cup to sip that tea out of instead of an ugly old mug.  In other words, we need to do things for us too.

I read a pretty amazing story today in the NEW YORK TIMES Magazine section about a woman who lost her job as editor of HOUSE AND GARDEN magazine when Conde Nast ruthlessly closed up shop and fired everyone in a one-week period.  Her complete and total depression/adjustment/whatever-you-want-to-call-it was one for the books and took her several years but she pulled out of it and found herself, finally, saying "One adventure is over; it is time for another...I am growing into a new season."  Read it if you think it might interest you:  
I'm not sure why it resonated with me so dramatically but it did.  Maybe it is because we do move, somewhat imperceptively, through our lives from season to season.  How we adjust to those seasons can be life-changing.  You don't have to have a serious illness to open your eyes; you just need to be willing to move on and look around you.  I really do believe that we make some remarkable changes as we "mature," if that is the right word, and they can be extraordinarily satisfying in ways you might never have expected.

Grim Nancy

"Eat Food, Not Too Much, Mostly Plants"
                  Michael Pollan