The Nutcracker

Hello All,

Many folks have been emailing and texting, wondering what has been going on in Kelly’s world since Thanksgiving.  She has been busily traveling to and from NY City for the last 10 days, going from one doctor to another and submitting to more exams and tests to monitor her progress.  We met with doctors, doctors met with other doctors, plans were agreed upon, appointments were set up, etc.  And in a parallel universe, we’ve been joined at the hip with the insurance company, lining up the endless bureaucratic paperwork required by a major medical event (a future blog entry will deal with health insurance, sharing critical information that we have learned along the way).

If I had to compare our life these last several weeks to something familiar, I would suggest the end of the first act of the famous musical, The Nutcracker.  And right at that point of the ballet when things are very, very wound up and crazy; when gingerbread and tin soldiers are twirling and spinning and running because the Mouse King and his minions are attacking!  We can relate to that because it feels as if we have been spinning around in a frenzy, scurrying from office to office, meeting and missing appointments, dashing for an unscheduled exam, gulping down meals at odd hours, fretting in waiting rooms, etc., etc.  With each day, the momentum increases and everyone is saying, “Hurry, hurry!  Why is the insurance company taking so long?  Why has the hospital not responded yet?  Where are these papers?  Take this here; take that there; call so-and-so!”  Inevitably, you start feeling  like you are one of the dancers in The Nutcracker, running, rushing, not having any idea what’s coming next.  Momentum builds up to a frenzy, just like in the musical!  We are hoping that once the treatment begins, the tempest will break and - bang! - all the madness will come tumbling down….. a deep peace falling over the land.  And we will return to a more normal, sane life.  The mice will have been destroyed and happiness will reign again over the Land of Sweets!  Yes, that’s what these weeks have been like. Crazy!

We’ve now interviewed Dr. Posner (chief neuro oncologist) and received his frank and insightful analysis.  We had a lengthy consultation with Dr. Mellinghoff (medical oncologist), who explained the planned chemo therapy (and confirmed that he will direct Kelly’s case over the long term).  This past week we visited Dr. Chan (radiation oncologist) and his team, who did a good job of explaining all the ins and outs of the radiation regimen.  All of these doctors are MSKCC staff and all treatment will be performed at the primary facility in NYC.  The therapies are very much the same as we explained in an earlier blog, i.e., 6 weeks of concurrent radiation and chemo therapies, 4 weeks of rest,  followed by 6 monthly cycles of chemo.  None of that has changed.

Starting Monday, the 13th, Kelly will be fitted for a head mask, used to keep her head immobile and precisely located during radiation.  A plaster mesh is placed over her face and head to make a mold that will then be used to make the mask.  A CT scan of her head will be taken and used to map the precise positions and angles where the beams of radiation will be directed into the head.  The radiation oncologist and a team of physicists (!) use the imagery to develop this very precise plan of attack.  This is called the "setup" phase and it takes nearly 2 weeks to complete.  

These radiation treatments are scheduled for five days each week, Monday-Friday, and will only take a few minutes each session.  It’s a matter of arriving at your scheduled time, fitting and adjusting the mask, sitting alone in a treatment room while being bombarded intermittently with radiation for a few minutes (this is IMRT therapy) and then removing the apparatus.  The photon beams enter the head along several different paths; all of the beams intersecting at the location of the tumor.  Hopefully, the radiation will cauterize the surrounding tissue and cut off the blood flow that keeps the astrocytoma cells alive and metastasizing (multiplying), thus killing them.  She was told to bring along a CD with the music of her choice and they would play that for her while she was being treated.  The staff allows the patients to choose the scheduled time for this daily regimen.

Concurrent with the radiation, chemo therapy is used, but for seven days a week.  The chemotherapy drug is temozolomide, and is available in pill form.  Called Temodar, it does not cause the terrible discomfort common with other forms of chemo.  We have been told by all the specialists that most people have no side effects from the chemo other than fatigue, which sets in after the 4^th week or so.  Temodar is recommended in Kelly's case because it works best against astrocytoma cells.  Temodar "interferes with cell division, thus slowing tumor growth.  Because the basic building blocks of temozolomide are small molecules, the drug is able to cross the blood-brain barrier and reach tissues other chemotherapeutic agents cannot. Temozolomide has been shown to prolong survival and improve patients' quality of life."  Kelly will experience some nausea, but that will be minimized by taking anti-nausea medicine each night an hour before she takes the Temodar, so by the time she wakes in the morning, she should be feeling fine.

Radiation and chemo therapies will begin as soon as they complete Kelly's mask, probably just before Christmas.   The task of providing radiation to the brain is very tricky and must be done by radiologists that specialize in brain tumors.  The path that is mapped out in the brain for the radiation to enter the tumor site(s) must be very precise as there is the risk of causing damage to other areas of the brain.  So, it has been very important that experts be in charge of the radiation and chemo therapies.  Dr. Mellinghoff and Dr. Chan are the experts in their specialties at MSKCC and they will have the continuous support and counsel of Dr. Posner; we are absolutely confident that Kelly's care is in the very best hands.

When the 6 weeks of radiation and chemo therapies are completed, Kelly will then rest for 4 weeks.  She will remain in NY for observation during those 4 weeks and if her team of doctors determine that the brain swelling diminishes in a normal fashion during this time, she will be allowed to return home to Panama.  The following 6 months of chemo can be done while in Panama and any MRI’s that are required during these 6 months also can be taken in Panama and sent to MSKCC.  Kelly will return to Sloan Kettering every 6 months for a checkup and, based on the final MRI scan at the end of this period, the doctors would decide upon further treatment, if any.  Once she returns home, she can resume her normal way of life (of course, within limitations… extreme sports are on the “No Way” list for life!).

We are tired…. it’s been a long 6 weeks!  But, we are most grateful that everything has turned out in such a successful manner.  Every doctor or nurse that examines Kelly shakes his/her head in disbelief that she had undergone a supremely delicate operation and recovery ordeal and yet continues to maintain high spirits and excellent health.  Her family looks at her in wonder.  She’s very strong of heart and we are confident that she will take on the next phase of her journey with the same optimism and deep faith that God is watching over her.

A wonderful family friend gifted Kelly the keys to a cozy furnished apartment only two blocks from the medical center on the Upper East side of Manhattan.  Kelly and Hector have found the center of the universe!  She is currently undergoing treatment at the nearby NYU fertility clinic (a precautionary measure - for her future), anticipating the start of radiation/chemo therapies at mid-month.  And during these tumultuous days we made another move - to the Glass House, a wonderful Modern wood/glass home set on a rocky ledge in the woods bordering Pea Hill.  With full-height glass walls on all sides, she offers sweeping views across the valley and past Schunnemunk Mountain.  We will probably reside there for the duration, winter weather permitting, and Kelly will switch between the two homes as needed.  Annie flew down to Atlanta this past weekend and will drive the Explorer back to NY the end of this week (with her beau, Thomson, as co-pilot); we've been forewarned that the little Mazda we brought North may not be capable of navigating the country roads to and from our winter hideout.  4x4 and tire chains!  Panameños shudder just thinking about it.

We are all very homesick!  Your notes and messages of comfort, enthusiasm, insight and support are the wind in our sails.  Stay connected, especially with Kelly and Ani.  We know that we have been deeply blessed - with your care, your friendship and your love.

Much love and saludos to all,

Mari and Mark

*Happy Faces in NY*

(1)Eskimo kisses are about all you can muster when the temperature drops into the 20's! (2)Hector at FAO Schwartz...Kelly says he lost his mind when he saw this much chocolate! (3)Watch out New Yorker's, there is a Panamena driving through traffic today...and it's her first time driving in the city! (4)"The best smooch is by my Pops!"~Kelly (5)Mom and I indulging on a Frozen Hot Chocolate from Serendipity! (6)Kelly and Hector take a stroll through Central Park on the last warm(er)day of the season.

A Note from Home

Now that we have completed recent consultations for Kelly's on-going therapies (more details to come soon) and adding some order to the confusion and uncertainties of our options in NYC and elsewhere, Dad returned to Panama last Thursday.  Ian and Mary collected Dad and baggage at Tocumen airport and quickly brought him up to date on local happenings both at home and office.   Upon arriving home, Dad found that Pauline and the (too) numerous household pets were in good health and anxious to relate all manner of recent disasters and triumphs since his last exit.

Well after Ian and Mary had left for home, Pauline appeared at the doorway to Dad's den.

"Mr. Mark, I leave you a note on the table."

"You left a note on the table?"  Now what manner of catastrophe would require that she write a note?

She disappeared from the doorway, quickly returning with the note.  

"'ere is it."  Then, taking up her beloved Scotty, Abigail, she retired to her little house in back.

After serving Dad a late-night supper and with quiet returning to the house, Pauline had sat down at the kitchen table and, writing neatly on a large index card, she composed this heart-felt poem for her sister, Kelly, and her family:

Sorrow

Our sunshine days are soon forgotten

when God sends the rain.

And when it rains on our parade

how quickly we complain.

But no one walks the road of life

in sunshine all the time.

There are pitfalls along the way

and mountains we must climb.

Sorrow dwells in the broken heart

where doubts and fear reside,

and thrives there in the shadows of tears

that we try to hide.

Where sorrow dwells, there is no joy,

no sunshine in our soul.

For dark and dreary are the days

when sorrow takes its toll.

God is with you

whenever there is pain.

There could be no rose

without a little rain.

A little faith, a little hope, abide.

And take heart;

Sorrow will soon depart.

November rains in Panama have again been heavy and ever threatening, causing widespread suffering and damage in the countryside.  But dry season will "soon come" and sunshine and dry weather will return.  As Pauline declared at the end of her note, we must "Keep the faith".

HAPPY THANKSGIVING!

Guess what?!?!?!  IT"S SNOWING!!! We are so excited...especially because we are now living inside of our Tia Bea's family's glass house (guest house)...we can spin in circles inside the house and feel like we are outside experiencing the snow flurry even hough it is nice and warm in here! The fire place is blazing and we are soon headed off to a Thanksgiving feast inside of a big ol'barn! Early this morning I made a batch of cookies to add to the feast...the house smells yummy! What a speacial day!

THANK YOU friends and family for all the love and support...we love you and couldn't fight this battle with out you.  Gracias!

XOXO Ani

Paciencia y Fe

Knowledge is light; it removes fear. 

  Hope is life; believing in the impossible.   

    Faith is trust; knowing He’s always there to carry you on His back.

      Patience is love; supporting one another, holding hands.

        Courage is determination, the will to walk a course.

Dearest All,

We were up and at it before the crack of dawn yesterday morning; we had been advised not to be late!   And Kelly was right on schedule for her cross-town consultation with Dr. Jerome Posner, Chief of Neuro-Oncology at Memorial Sloan Kettering Cancer Center (MSKCC).  The initial phase of the consultation included only Kelly and Dr. Posner; Kelly related her story of the events leading up to the discovery of the tumor and answered a few questions about her medical history.  Dr. Posner had Kelly perform several tests to check her neurological responses (e.g., finger touching, eye movement, sensory responses, walking, balance, etc.), all of which she performed well.  After this initial phase, la familia (including Tia Bea, and Dad – who returned from Panama Thursday night) was able to join them for a question and answer session.  Dr. Posner opened the session: “Kelly, what do you know about what’s been going on and what questions would you like to ask me?”  And in the ensuing discourse, of about one hour, we gleaned critical facts about her cancer, her recommended treatment and her future.

In short, Dr. Posner informed us that Kelly has an unusual variant of a common type of brain tumor (anaplastic astrocytoma) that occurs in about 25% of brain cancer patients.   It’s unusual for someone her age to have this kind of tumor (commonly found in adults over the age of 60) and the variant that she carries is quite unique. 

Dr. Posner further explained that her operation and the post-surgery treatment will never cure Kelly of the cancer, as there are no cures for her type of brain tumor; anaplastic astrocytomas always return.  The recommended post-surgery therapies are meant to shrink the tumor and impede re-growth, but they will not cure her of the cancer.  There is a 99% probability that the cancer will return within 2-5 years, requiring that she again undergo surgery and/or additional therapies (as decided at that time by her medical team).

The treatment protocol recommended by Dr. Posner is the same one that was identified by the neuro-oncologist at NY Presbyterian Hospital, Dr. Pannullo:  six (6) consecutive weeks of chemo and radiation therapies, followed by a rest period of four (4) weeks and then a resumption of (minimized) chemotherapy for at least one year, and perhaps for the rest of her life.

The actual radiation therapy requires but a few minutes each day, Monday through Friday, in the area where the tumor was removed and spreading (she will lose the hair in those areas during the radiation treatment).  The radiation will probably be administered via IMRT (intensity-modulated radiation therapy) and/or IGRT (image-guided radiation therapy).  The proposed chemotherapy agent for her type of cancer is temozolomide (Temodar), a “targeted agent” that is in capsule form.  Kelly will take one capsule every day concurrent with the 6 weeks of radiation treatment.  After completion of the radiation therapy and another four weeks of rest, she’ll start the long-term treatment: five days of Temodar and 26 days without.  Annual MRI’s would be taken to monitor the tumor cells and Dr. Posner indicated that she could have these MRI’s taken in Panama, as the set taken at Hospital Punta Pacifica was excellent (that’s very good to know!).

Most patients are fatigued by the radiation, but each individual responds differently.  More than likely, Kelly will be minimally affected by the radiation.  The chemo pill makes you feel mildly nauseous, so it would be taken at night with another pill meant to reduce the nausea.  Again, each body responds differently, but this treatment is less intrusive compared to other chemo therapies (usually given intravenously).

Other than these therapies, Kelly can live a normal life with no restrictions.  Dr. Posner recommended that she stop all the nutritional supplements, as there is no scientific evidence that nutritional supplements are helpful in arresting the growth of tumor cells or that they do not harm the patient.  Whether she decides to take supplements or not, she must be careful not to take anything during the 6 week period of treatment that builds up cell immunity; the whole idea of the therapies is to break down cell immunity in order for them to destroy cancer cells.

Kelly also asked Dr. Posner about the availability and advantages of proton beam radiation, a new alternative to photon radiology (used in both IMRT and IGRT).   The doctor said that medical science still did not have evidence that proton radiation is any more effective than traditional photon technology.  Dr. Posner will verify whether Kelly might be a candidate to participate in any on-going clinical trials at MSKCC (these are studies used to develop new treatments, including new chemotherapy agents, multimodal treatments and biological therapies).  When asked if she would have to continue to take seizure medicine, he said only for 1 or 2 years, at which point they could taper it off if she did not suffer continued seizures.  

The good news: Kelly will be able to return home at the end of the 6 weeks of radiation/chemo therapies, returning only for six-month checkups after that!  She will need further radiation only if and when the next tumor makes its appearance.  And she can get Temodar in Panama, so she doesn’t need to be in NY for that!  Yahoo, we should be home by the end of January!  The bad news: we forgot to take a group photo of La Familia, the Doctor and the Rabbi.

And so we have reached another crossroads – do we stay this recommended course, or do we seek other advice?  We will decide within a week and we trust that God will continue to illuminate our path.

Last night we took the advice of Isa Juliao and enjoyed In the Heights, a Latino musical showing on Broadway.  What great fun – the staging, the salsa, the dancing, the colors!  Ani’s college-friend, Katrina Franzen, came into the city from Connecticut and joined in the merriment, which included an after-show dinner at Breeze, a French-Thai eatery nearby the theatre.

In the show’s most poignant number, Abuelita Claudia sings of “combing the stars in the sky for some sort of sign”, much as we do each day.  And it is Abuelita Claudia’s mother that counsels her to have “Paciencia y Fe” (Patience and Faith).

We too will comb the stars in the sky, and pray for another miracle!

Mari and Mark

Big Apple - Big Smiles

Yesterday, Nov.18, Kelly registered at Sloan Kettering and as we made our way back to the hotel to find a restaurant for lunch, Mom insisted we take a picture with the NYC Taxi's behind us...the only problem was that they move too fast!

About two hours later...Kelly, Mom and I finished eating at this DELICIOUS organic pizza bar on 3rd Ave between 73rd and 74th St. called Slice, The Perfect Food! We left that place so happy, we couldn't help but take a picture of our beaming smiles!!

The Nutritional Challenge

And God said, Behold I have given you every herb bearing seed, which is upon the face of all the Earth, and every tree, in which is the fruit of a tree yielding seed; to you it shall be for meat.

–Genesis 1:29

Dear Family and Friends,

What would we do without Internet and Amazon.com to help give us answers!  As soon as we got settled into Mountainville and could set up our laptops, we ordered a ton of reading material to help us get quickly educated on brain cancer, chemo, radiation, nutrition and herbal medicine and healing of cancer.  We settled down with Bea’s dogs at our feet and started reading aloud and discussing what we were reading.  Having no background in the subject, the beginning days were frustrating trying to make sense of everything.  Now, slowly, some of it is starting to make sense.  At least we don’t feel so helpless, and now we can start doing something to move forward positively (in the nutritional sense of the term). 

A week ago the words in Genesis 1:29 didn’t have much meaning; now after much reading in search of how to fight Kelly’s brain cancer, we can read the words and understand.  The nutritional material we have been reading repeatedly claims we don’t have to go far to find the miracle healer, right outside of our door is our green world of nature and it provides all the nutrients needed to sustain life.  Eat a diet rich in GREENS and HERBS, and you will feed your body properly and help it have a strong immune system to protect you from disease and also fight disease.  Our plant world has all the secrets to curing and sustaining life.  The challenge is eating the right foods.  This does not mean that chemo and radiation aren’t needed to combat Kelly’s cancer, it just means that eating healthy and staying away from foods that tumor cells thrive on can help greatly.

A  new diet regime is now our immediate focus.  It means

·  We toss the chips and dips, candy, pastries, can food, etc. 

·  We bring aboard a juicer and all organic veggies, herbs, fruits, grains, nuts and natural goat milk yogurt.

·  We learn which veggies and greens should be cooked and which are best eaten raw. 

·  Some fruit are heavy in sugar, we need to substitute these for others that have higher nutritional value and are ranked lower on the glycemic index.

·  We need to eat less meat and get our protein from other more nurturing sources like nuts and beans, dark legumes, organic fruits, fish, and free range organic eggs, etc. 

·  We need to read the labels on foods so we make educated decisions about our food intake.

·  We need to eat organic foods and foods that are not heavily pumped with hormones and pesticides. 

·  And we must be careful to stay away from eating chicken, unless we know that they are “gallina de patio” and have had a lot of sunshine.  Chickens raised in coops are given growth hormones and it’s believed that cancer feeds off of hormones.  But for now, we are staying away from chicken altogether

One of Ani and Thomson’s friends, Andrew Brodhead, visited in Panama with us for 3 months.  You may have met him, he’s a photographer.  Andrew’s parents own an organic food store in Savannah, Georgia called Brighter Day (http://www.brighterdayfoods.com/).  Andrew’s father is a Certified Nutritionist who specializes in natural foods and medicines.  For the past week we have been in close contact with him, as he has guided us in selecting some naturopathic medicines to complement Kelly’s new diet; these medicines will begin to act as natural cancer fighting agents as well as immune system boosters.  Also, Kelly talked with Alan Furmanski on the phone (thanks to a phone call that Rochelle Harrari made…thank you so much Rochelle!!!).  Alan is a close friend of her brother.  He sent Kelly some information on the juices that he drank when he was fighting brain cancer.  Kelly has already started her regime of herbal supplements and natural organic juices to help boost her immune system before she begins radiation and chemo.  Once we know more about the plan of action for her chemo and radiation, her natural nutritionsits will work with the oncology and radiation departments to coordinate a balance between the two medical worlds.

We now await the visit this Friday with Dr. Posner at Sloan Kettering.

Bueno, saludos a todos.!  Take care and keep connected.  And yes, please, keep those prayers rolling!

Big hug,

Mari