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 4th 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
