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