Treatment Begun - Week of August 28 - The answer my friend is blowin' in the wind

Damaris and I were dropped off at a McElderry House Lodgingtownhouse ("short- and long-term housing for Johns Hopkins patient families") a couple of blocks from Johns Hopkins by our friend Flor de Lis yesterday afternoon.  This morning we started off with a 15-minute chemotherapy patient training video in the Sidney Kimmel Comprehensive Cancer Center Medical Oncology Treatment area, after which an IV needle was placed into the septum of the mediport placed surgically last Thursday under the skin of my right pec, and connected to a catheter for infusion of my three cancer drugs.  The infusion started with two anti-nausea drugs and then Benadryl, to limit nausea from the toxic effects of the cancer drugs.  Then taxotere was infused, followed by cisplatin.  A portable infusion pump was connected to begin infusing 5-FU (fluoroucil) at the rate of 2.5 ml/hr over 96 hours.  The pump is hanging on my belt and will be my constant companion while eating, sleeping, showering, etc. until Saturday just before noon.  The slow infusion causes less damage to the vein in which it's injected, with less abrupt an effect on my system overall and greater effect killing cancer cells.  The large vein into which the catheter from the mediport empties goes quickly to my heart and is dispersed more rapidly throughout my body.  Unfortunately all three drugs target rapidly dividing cells in my body, which also includes non-cancerous cells such as white and red blood cells produced by my bone marrow as well as hair follicles.  Next Tuesday at Johns Hopkins I'll have my blood cell count tested along with kidney function, and I'll receive a shot of another drug that will boost white blood cell production to restore my resistence to disease, which will have been compromised by reduced white blood cell production as a cancer drug side effect.

There were no rooms available in Hope Lodge or Johns Hopkins' Hackerman-Patz Patient and Family Pavilion.  Both facilities always have a waiting list, so new patients get a room only if they're at the top of the list and another patient vacates.  We will move out of McElderry House lodging to be guests of my sister-in-law's brother Daniel Tracy and his wife Veronica in their house on the Baltimore Waterfront.  Raquel will pick us up on Saturday and drive us back to enjoy the God-sent hospitality of Leroy and Flor de Lis Snyder in Calvert County in the intervening weeks when I won't be receiving chemotherapy.  I hope that we can get into Hope Lodge for my seven weeks or combined radiation/chemotherapy starting October 9.

My last post mentioned an earthquake with epicenter not far away in Virginia.  You're all aware that this past weekend Hurricane Irene stormed slowly by Chesapeake Bay on its way north.  Thank God none of us was injured at all by the storm.  And thank God that neither the Snyder's house, nor the house trailer of friends Lorenzo, Juanita and their two sons, was damaged.  Leroy lost some trees, which Lorenzo cut up with his chainsaw, along with trees blocking the driveways of two of Leroy's and Flor de Lis' single women neighbors.  Leroy and I helped pull the cut-up tree branches and trunks into the woods.  I only handled the light stuff because of stitches where my mediport was placed on Thursday.  We lost power at 6 pm on Saturday, when the storm's eye was still south at about the NC/VA line, and power wasn't restored before we left yesterday for Baltimore.  It finally got restored at 11 pm last night, according to Leroy.  Because the Snyder's house gets its water from a well, no power meant no water.  We got by with bottled water and other beverages and flushed the toilets once in a while with water that Flor de Lis had filled bathtubs before we lost power ("if it's yellow, let it mellow; if it's brown, flush it down").

So we've now experienced two disasters in short order.  Some have said that my cancer diagnosis is a third for me, so I don't need to worry that disasters tend to come in groups of three.  But the diagnosis is actually a Godsend, because it's leading to highly qualified treatment.  Without dwelling on what a third disaster might be, the hurricane brings to mind a Bob Dylan song about listening to the Great Creator's plan for us to live in Peace and Justice among men and with Nature, in words that compliment Martin Luther King Jr.'s iconic "I Have a Dream"speech as part of the March on Washington.  It's particularly significant because this past Sunday was the 48th anniversary of Dr. King's speech.  Unfortunately, the ceremony to inaugurate/consecrate the MLK, Jr. Memorial on the National Mall along the Tidal Basin was postponed because of the hurricane.  Seeing footage of 200-year-old Vermont covered bridges collapsing under historical floods captures our stewardship responsibilities for God's Creation which provides our biophysical sustenance.  Bob Dylan's middle verse is especially pertinent to my thinking right now: 
"How many years can a mountain exist
Before it's washed to the sea?
Yes, 'n how many years can some people exist
Before they're allowed to be free?
Yes, 'n how many times can a man turn his head,
Pretending he just doesn't see?
The answer my friend is blowin' in the wind
The answer is blowin' in the wind."

Treatment Determined - Week of August 21 - And the Earth Moves, Under My Feet

Damaris and I met today with Dr. Shanthi Marur and Dr. Harry Quon, Medical Oncologist and Radiological Oncologist, respectively, and their professional staff, at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.  They went over the results of my biopsies taken on Aug. 12, which determined that both my left tonsil and the area biopsied in the upper posterior area of my nasal cavity (nasopharanx) are cancerous.

Dr. Marur and Dr. Quon told me that treatment will begin with chemical therapy over a six-week period, during which I will receive three medications to kill cancer cells in my tonsils, nasopharanx, neck lymph nodes, and anywhere else in my body to where these cancers might have metastasized (although my PET scan showed no cancer below my collarbones).  On day one (Tuesday, Aug. 30) I will receive cisplatin and taxotere.  That day and the three subsequent days I will receive a slowly infused dose of 5-FU (Fluorouricil) administered by a small portable pump.  The subsequent two weeks I will  be allowed to recover from the effects of the medications, before undergoing another week receiving the three medications.  A subsequent two-week recovery period will allow evaluation of the effects of the three drugs in reducing the size of my tumors, before initiating a seven-week treatment of intensity-modulated radiation therapy (IMRT) while receiving cisplatin or carboplatin (based on tolerance to cisplatin during 6-week protocol receiving cisplatin during two weeks).  So my entire treatment will begin on Tuesday, Aug. 30, and will run through Friday, Nov. 25, a daunting span of time.

To prepare for my treatment, this Thursday I'll receive an MRI scan and be fitted with a thermoplastic mask that will be used to immobilize my head and shoulders to the table of the linear accelerator that will produce, modulate, and focus the radiation for my treatment.  The MRI will be used to program the three-dimensional location of cancerous cells to be irradiated and killed and tissues to preserve by avoiding their irradiation.  The same day I'll also have a "port" fitted through the skin of my chest through which the 5-FU will be slowly pumped starting next  Tuesday.

Both Dr. Marur and Dr. Quon have very positive and supportive attitudes, attributes shared by their staff.  This will be a long road through treatment to cure, made much more tolerable by the positive support from Johns Hopkins specialists.  I'm not sure that I could make it without the loving support of Damaris and thoughts and prayers of many friends.  The hospitality of Leroy and Flor de Lis Snyder, welcoming us to their home and the use of their daughter Cynthia's car for travel to and from Johns Hopkins during diagnosis, have been amazingly generous.

Perhaps a divine sign that the powers of the Universe are aligning in order to channel positive force to my cure, a 5.9 earthquake shook the Central Atlantic area of the East Coast as I got ready to draft this blog post.  The title of Carole King's song came to me, so I inserted them in the title of this blog post, although the rest of the lyrics better describe how I feel about Damaris.  I choose to take this natural event as a positive sign, maybe even a transcendental link to Costa Rica, which rattles and shakes much more frequently than this area, as our son Steve and daughter-in-law Pati take care of our house and two dogs in Grecia.

Steps Toward Treatment - Week of August 14

Damaris and I enjoyed the company of our daughter Raquel and her fiance Alex Schoup on Sunday.  We made a trip to Calvert Cliffs State Park intending to take the park trail to the beach below the cliffs, to walk along the beach and search for fossil shark teeth eroded from the Miocene deposits exposed at the cliffs. However, rain threatened and we lacked rain gear, so we decided to retreat to Raquel's car and continue south to Solomon's Island.  We found cinnamon rolls and coffee in St. Mary's county across the high Patuxent River bridge, a great thing on what turned out to be a rainy day.

Being in the greater DC area where Raquel lives and being able to spend time with her and Alex is a silver lining of the cloud of tonsil cancer.  Prior to our first trip to Johns Hopkins to drop off my test results from CIMA Hospital in Costa Rica, Raquel put together a schedule and checklist so that we would get to Johns Hopkins on time and not forget anything.  She also called Dr. Gourin's assistant to talk about her concern. that I receive timely care.  Her positive manor no doubt helped get me scheduled for my first appointment with Dr. Gourin that same Friday.

I made a dental appointment Tuesday to have fluoride trays custom made in order to begin daily fluoride treatment of my teeth to protect them from decay caused by expected reduced saliva production during and after radiation therapy, a common side effect.  Unfortunately, the impression of my lower teeth had to be re-done this morning, delaying initiation of fluoride treatment, which I'll begin as soon as the trays are ready.

Dr. Gourin called today (Thurs., Aug. 18) to inform me that both biopsies that she had taken last Friday from my left tonsil and the area in my nasopharanx (high posterior nasal cavity) tested positively for HPV.  This is good news because HPV-caused head and neck cancer has a high prognosis for successful treatment.  Dr. Gourin didn't expect that the area in my nasopharanx was cancerous, although that's not unprecedented.  She told me that I can likely qualify for ongoing NIH trials.  Treatment and trial participation will be discussed and likely determined at my appointment next Tuesday morning scheduled with Dr. Shanthi Marur, medical oncologist.  The appointment will likely also include Dr. Quon, radiation oncologist, and others from the Head and Neck Cancer Multidisciplinary team.  It's possible that my actual treatment will begin Monday, August 29.  Treatment planning next week will involve another MRI and fitting of a thermoplastic mask that will be fastened to the linear accelerator table to hold my head still during irradiation to precisely target treatment to kill cancer cells and minimize effects to normal cells.

Steps Toward Treatment - Week of August 7 Post 3

Damaris and I attended the Head and Neck Cancer Multidisciplinary Clinic this morning in the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore.  It started off with an interview of my record and medical history by Dr. Shanthi Marur, Medical Oncologist on the Mutlidisciplinary Team.  She took what she found and briefed the other clinicians and specialists in another room where they were reviewing results of my tests and scans, after which they then joined Damris and me in the examination room.  Present were Dr. Wayne Koch, head and neck surgeon and Director of the Head and Neck Cancer Center, Dr. Harry Quon, Radiation Oncologist, Sarah Bonerigo, Physician's Assistant in Medical Oncology, Heather Starmer, clinician in speech pathology, and the Multi-D Clinic Coordinator, Amy Brady, an oncology nurse.  A nutrition services specialist, Mary Eve-Brown, will also be on the team overseeing my treatment and recovery.

My nasal passages and cavity were anaesthetized and a fiber optic endoscope was inserted so the group could view my tumerous tonsil, throat, and nasal cavity.  We were told that the PET scan showed that my tonsil and lymph nodes on both sides of my neck were cancerous, but that there was no sign of cancer anywhere below my clavicles (collar bones), which was very good news.  They told us that the fine-needle biopsy taken by Dr. Gourin last Friday had revealed a marker for human papilomavirus, but didn't extract enough tissue to positively confirm presence of the virus as the likely cause of my cancer.  They also said that the PET scan had revealed another area on my nasopharanx (upper posterior area of my nasal cavity) that absorbed radioactive glucose and re-emitted radiation, a possible sign that the area is cancerous.  They viewed the area with the endoscope, and recommended biopsy of the cancerous tonsil and the new possibly cancerous area to to obtain enough tissue for confirmation of HPV and determine whether the new area is cancerous.  Dr. Quon explained that if the new area were cancerous, it would have to also be treated with radiation, and because of its location that treatment would present greater risk of permanent damage to my salivary glands.

The specialists participating in the Multi-D clinic stated that positive confirmation of HPV would indicate a different treatment regime with a very high success rate with fewer side effects than would be used for cancer from other causes or unknown cause.  So they are in consensus that treatment should wait to determine if the tumor is caused by HPV and the status of this new area in order to plan treatment to correctly target and shape the radiation beams from the cancer center's linear accelerator.

Dr. Koch said that he could do the biopsy today, but that he wanted to consult with Dr. Gourin, because she was my initial specialist for my Hopkins consultation.  Dr. Gourin was available and did the new biopsies today at noon in the Head and Neck Surgery Clinic of the Hopkins Outpatient Center.  The collected samples are being analyzed in the Johns Hopkins lab.  Dr. Gourin was quite sure that the area on my nasopharanx isn't cancerous; instead it seems to be a pocket of mucous, possibly in reaction to the cancerous tonsil.  More good news.

The results of the biopsy won't be ready until mid-week, and my next scheduled appointment is Tuesday, August 23, so it's apparent that treatment is unlikely to start before the week of August 28.  I'm a bit anxious that that treatment get started, to stop cancer growth and eliminate it from my body.  But the consensus of the specialists for the additional tests will ensure that I receive the best possible treatment.

Steps Toward Treatment - Week of August 7 Post 2

Since my post of Monday, I've had an MRI of my head and neck on Tuesday and a PET scan of my body from sinuses to groin, with a more focused PET scan of my head and neck area.  A CT scan of my head and neck area with contrast was also done at the same time.  That was my first MRI, and the technician's warning that the machine would be loud was no exaggeration, in spite of having been provided with ear plugs.

I just had my appointment with a periodontist recommended by the dentist who examined my teeth and provided a letter stating that my teeth were OK for radiation treatment.  In other words, his clearance was a qualified one.  The periodontist said that my teeth and gums were fine to go ahead with radiation treatment, but because of the high degree of gum recession on some teeth that I should have a customized tray made to apply fluoride during treatment.  That possibility was identified in the Johns Hopkins draft clearance letter but was not addressed by the dentist, so I guess I'll have to get back to him to see if his office can prepare that today.

My appointment for the Head and Neck Cancer Multidisciplinary Clinic was moved up to 9:00 a.m. tomorrow, so Damaris and I will have to get up early to make the drive to Baltimore through rush hour traffic in order to arrive on time.  I will hopefully receive a consensus opinion of the head and neck cancer clinicians and specialists participating in the clinic on my diagnosis and treatment.  Hopefully, that will be positive; my next post will share what we hear.  I'm grateful for your positive thoughts and intercessions enabling me to benefit from the high-quality specialists, technicians, and medical equipment at Johns Hopkins, as well, hopefully, from the lodging at the American Cancer Society Hope Lodge.  My charitable contributions have never included the American Cancer Society, but this experience broadens my perspective and hopefully yours, as well.

We continue to be blessed by the friendship of Leroy and Flor de Lis Snyder and their family, and by Raquel's frequent visits.

Steps Toward Treatment - Week of August 7

On the afternoon of Friday, August 5, after returning with Damaris from my appointment with Dr. Gourin in which she diagnosed with tonsil cancer, I received an email from Amy Brady, the coordinator of the Head and Neck Cancer Multidisciplinary Clinic, with attachments including a draft letter for dental clearance.  I wasn't surprised that dental clearance was requested, since when my aortic valve was replaced with a bioprosthetic at Johns Hopkins in October 2005, dental clearance was required, for which I had to have a root canal and crown mounted on a lower molar.  The need for dental clearance prior to my cancer treatment caused some concern, because a month and a half ago I broke a tooth in Costa Rica, which was repaired with a temporary crown that I hadn't yet had replaced with a permanent one.  Today I saw a dentist at the dental clinic in Prince Frederick MD used by my hosts here, the Snyders.  Prior to my appointment I called the number for the dentist identified as part of the Multidisciplinary Clinic Team to ask whether a temporary crown would have to be replaced with a permanent one.  He returned my call as I was brushing my teeth in the lavatory of the dental clinic office, and said that the principal concern is that radiation treatment lowers the supply of blood to the jaw, making any tooth extraction or restoration much more complicated, at least during a recovery period after treatment.  The dentist at my visit today provided a letter stating his opinion that my dental health met the criteria established in the dental clearance guidance provided by the Multidisciplinary Clinic.  However, he recommended that I be evaluated by a periodontist prior to my cancer treatment, and an appointment with a local periodontist is scheduled for Thursday.

I was informed this morning by Dr. Gourin's assistant that I'm scheduled for an MRI of my neck area tomorrow afternoon in the Radiology Department of Johns Hopkins Hospital, Aug. 9, and for my PET scan on Thursday afternoon, Aug. 11.

The attachments from Amy Brady included the Guest Acceptance Policy for Hope Lodge, where we hope to obtain lodging during my treatment in the cancer treatment patient lodging funded by the American Cancer Society.

The Beginning - Loss of Left Ear Touch Sensitivity

Somewhere around mid-July, I noticed that the skin of my left ear had lost some sensitivity to touch when washing my face or touching my ear while lying in bed.  When I noticed my left lymph node at the bend of my left jaw was quite swollen but not sore, I became sufficiently alarmed to make an appointment with an ear, nose, and throat doctor at CIMA Hospital San Jose, a modern private hospital in the San Jose Costa Rica suburb of Escazú.  The hospital is modern and caters particularly to expatriates and wealthy Costa Ricans who want more immediate and modern medical care than they might get from Costa Rica's crowded socialized medical system.  The ENT physician whom I saw ordered CT scans of my nasal and throat areas and an ultrasound biopsy of my swollen gland.  The biopsy pathologist's report findings were "compatible" with metastasized squamous cell carcinoma.  Needless to say, that startled me greatly, and I quickly developed two priority objectives:  obtaining the most competent medical care possible for further diagnosis and possible treatment and to do so as quickly as possible.  I decided to seek medical care at the Head and Neck Cancer Center of Johns Hopkins Hospital in Baltimore, where I was operated on for placement of an artificial aortic valve in October 2005 and whose medical care impressed me greatly.  I made one-way airline reservations from San Jose to Washington Dulles for my wife Damaris and myself for this past Tuesday (Aug. 2), and our daughter Raquel picked us up at Dulles and the next day brought us to our friends' Leroy and Flor de Lis Snyder, in Huntingtown, MD.  Last Thursday, Aug. 4, I took the CT scan data and films and pathology slides from CIMA Hospital to Johns Hopkins, and the following day had an appointment with Dr. Catherine Gourin, surgeon in Johns Hopkins' Department of Head and Neck Surgery and member of the Head and Neck Cancer Center physician team.  Dr. Gourin diagnosed me as having tonsil cancer, took another biopsy from my left cervical lymph node, and her assistant has scheduled me for a full-body PET scan and MRI of my neck area for this week.  This Friday I will receive a comprehensive evaluation and consensus opinion of some of the nation's leading head and neck cancer clinicians and specialists at the Head and Neck Center Multidisciplinary Clinic.  Dr. Gourin said that my prognosis of successful treatment is good and would likelyl consist of seven weeks of combined chemical and radiation treatment.