Cured! Five-Year Post-Treatment with No Recurrence!

My 5 year post-treatment appointments with my medical and radiation oncologists of my head and neck cancer treatment team were held on November 15, 2016, in the Johns Hopkins University Hospital Sidney Kimmel Comprehensive Cancer Center clinic area in the hospital's Weinberg Building. My medical oncologist, Dr. Hyunseok Kang, was about to fly overseas, but he came by to congratulate me on having had no recurrence, telling me that as I result I'm considered to be cured. His Physician's Assistant, Sarah Bonerigo Sagorsky, gave me a more detailed examination--she had been with my case since my diagnosis in August, 2011. Dr. Kang had replaced the medical oncologist on my treatment team, Dr. Shanti Marur, who had teamed with my radiation oncologist, Dr. Harry Quon, to determine my treatment that had begun on October 17, 2011. Dr. Marur had also shared the good news after my fourth post-treatment PET scan, having talked with the radiologist who examined the PET scan results, relating that the scan had shown no sign of cancer in my treated tissues, nor in the rest of my body down to my legs. Dr. Kang replaced Dr. Marur when she left Johns Hopkins to work in another hospital.

My final appointment last November 15 was with Dr. Harry Quon, whom I consider to be an absolutely top-rate radiation oncologist, in part due to his excellent programming of my radiation treatment with a cance center radiation physicist to minimize the radiation's negative effect on my salivary glands (and on my beard hair, with minimal thinning of hair along my chin and reduction of hair on my hard-to-shave throat, although that's a fortunate secondary result probably not predominantly considered in his treatment design). Dr. Quon regularly "scoped" the tissues inside my nose, throat, and mouth with an endoscope, and this time did so VERY thoroughly. He had also trained very well his current resident, who was able to thread the endoscope through my left nostril past my deviated septum without pain (some tickle making my eyes water), having again refused spray of a local anesthetic that I found early-on to produce an annoying nasal discharge for the rest of the day following scoping. The detailed endoscope examination of my treated tissues in my oropharynx, and palpation of my neck to feel for swollen lymph nodules, provided me the assurance that I had had no recurrence. Dr. Quon also congratulated me on being cured. As we shook  hands in farewell, and he reminded me (uncessesarily) that tests every six months of my thyroid stimulating hormone level are essential, I told him that I always enjoyed my appointments with him over the past five years, as much for his agreeable nature as for his professional capabilities.

So I wish anybody who has found this blog because they were or are anticipating or enduring the challenges of diagnosis and treatment of HPV-caused head and neck cancer, or have loved ones so challenged, the best of luck in their treatment and follow-up, and that they keep faith in our dedicated medical professionals, doctors, PA's, nurses, phlebotomists, therapists, radiologists, and their office assistants. I'm deeply grateful for the excellent care and positive attitudes of all who have contributed to my care at Johns Hopkins and those of my fellow patients, many who shared Damaris's and my life during treatment in Hope Lodge, the American Cancer Society residence in Baltimore for patients in Baltimore hospitals undergoing cancer treatment.

Happy Holidays to all!

Short Videos of beginning and end of my last treatment, December 6, 2011

One Year, Eleven Months Post-Treatment Follow-up Appointments, October 29, 2013

My follow-up visits with my treatment team physicians went well on October 29.  My chemical oncologist, Dr. Shanti Marur, had informed me in April that she would be moving to a different hospital and that a new medical oncologist would join my treatment team.  That turned out to be Dr. Hyunsoek Kang, who had reviewed my case history and examined me.  He found my recovery to be going well and reviewed my blood tests results from this visit.  He recommended that I return to Hopkins for my next follow-up in six months and that the return interval would become yearly in the fourth and fifth years following treatment.  He went on to say that if no sign of recurrence occurred after five years that I would considered cured.  Next, my radiological oncologist, Dr. Harry Quon, examined me, including with his endoscope, finding tissue healing to have progressed well.  He viewed my re-grown beard with his endoscope, recording the image to document how his precise targeting and execution of my radiation treatment avoided my lower jaw.  That was important for minimizing impact to salivary glands with the benefit of re-growth of my beard to neatly follow my jaw line.  Dr. Christine Gourin, the head and neck surgeon on my treatment team who was the first physician whom I saw at Johns Hopkins following my initial biopsy in Costa Rica and who diagnosed my cancer, also scoped me and found my tissues to be recovering well.  I mentioned to her that I had experienced some occasional instances of aspiration of liquids and food, and she asked if I was seeing my treatment team speech/swallowing therapist on this visit.  I wasn't, and I commented that I had never had a swallowing test when I had seen her on previous visits.  Dr. Gourin made an entry in my chart that my next visit in six months should include a swallowing test.  She asked me if I had been regularly doing the swallowing exercises that my treatment team speech/swallowing therapist had provided, and I said, "Not very regularly."  She stated that patients who had undergone concurrent chemo-radiation treatment and had daily performed the swallowing exercises during and after treatment had been found less likely to experience swallowing difficulties years after treatment, whereas patients who neglected to do the exercises often developed swallowing difficulty.  So I need to get on the ball and resume daily exercises to strengthen my swallowing muscles.

I had made an outpatient appointment for the Johns Hopkins Dermatology Department prior to my travel to Baltimore in order for a skin exam.  Both my father's and mother's sides of my family have some history of skin sensitivity to the sun.  At my appointment, the same day as my appointments with my cancer treatment team, a lesion on the right side of my face that I had been concerned about was biopsied.  Last Friday I received a call from a nurse in the Dermatology Department to inform me that the biopsy was positive for basal cell carcinoma.  Because I'm flying to Chicago tomorrow, November 4, I can't have the lesion removed at Hopkins and will try to get that done at a facility in Chicago before returning to Costa Rica on November 11.

Once again, the best part of my visit so far to the States was seeing and spending time with our daughter Raquel.  I'm very grateful for the hospitality of my friends Mark and Bella Smith in Vienna VA and of my friends Tony and Cheri Catanese in Harpers Ferry WV.  This week will bring the joy of visiting our son Tim, daughter-in-law Bret, and first grandson, Ollie, in Chicago.

One Year, Four Month Post-Treatment Follow-up Appointments, April 16, 2013

I returned to Johns Hopkins Hospital's Sidney Kimmel Comprehensive Cancer Center's Head and Neck Cancer Center for follow-up appointments on April 16, 2013, one year and four months post-treatment.  My doctors had not indicated a PET or CT scan for this visit, apparently an indication of their determination that I was recovering well from treatment and that the four post-treatment PET scans would have shown any tendency toward re-initiation of tumor growth.  Doctors Marur, Gouin, and Quon all examined me this visit, Dr. Gourin with an endoscope.  Dr. Quon examined my tonsillar area and larynx visually and tactilely.  They all commented that my tissues had healed so well that it wasn't apparent that I had undergone radiation treatment.  Dr. Quon commented, I sensed with a bit of pride over the skill of his programming of my radiation field exposure, on the re-growth of the hair of my beard along my jaw and the substantial saliva on his examination glove when he removed his fingers from my gullet.

My doctors recommended that I return for my next visit in six months.  Since they'll probably want a two-year post-treatment PET scan, I'll need to clarify whether I return in October, which would be six months from this visit, or in early December, which would be two years following the end of my treatment.

As always, I've enjoyed seeing and spending time with Raquel, who once again drove me to my Baltimore for my appointments, and also visiting my friends Mark and Bella Smith.  Mark and I played 18 holes of golf (with a cart) on the Lakes Course at Twin Lakes Golf Course in Centreville VA.  I also went into Washington DC one day and visited the Sackler Gallery of the Smithsonian Institution to see the Cyrus Cylinder, with its cruciform account of King Cyrus II of Persia's liberation of the Jews and other peoples from slavery upon his conquest of Babylon around 530 BC.  The sun-baked clay cylinder, discovered by a British archaeologist in 1879 while excavating Babylon, resides permanently in the British Museum, and was loaned to the Iranians in 1971 when Shah Pahlavi celebrated the 2,500 anniversary of the Persian empire of Cyrus the Great.  A replica of the cylinder was presented by Pahlavi to the United Nations, which considers Cyrus's declaration engraved on the cylinder that the peoples of his kingdom were free to practice their religions and customs and have their religious objects returned to be the "Original Declaration of Human Rights."  I was fortunate that my follow-up medical visit allowed me the opportunity to see the Cyrus Cylinder in person.

I fly tomorrow to Chicago to visit Tim and Bret and meet my grandson Oliver Stephen Ford.  I'm excited about holding and getting to know our first grandchild.  Damaris flew there the day before I flew to DC, and has no doubt already spoiled Ollie.

This past Tuesday, December 4, 2012, I had my fourth post-treatment PET scan at Johns Hopkins Hospital.  The first words from Dr. Shanti Marur, my medical oncologist with whom I had my first appointment after the scan, were "Do you want to hear the good news?"  She had just talked with the radiologist from Hopkins' PET Center who had reviewed the scan.  She went on to say that the scan detected no sign of cancer in my treated tissues, nor in the rest of my body down to my legs.  My blood chemistry results were also good, with recovery of normal levels after the effects of chemotherapy that I had received both prior to and during concurrent chemo-radiation therapy.  My PET scan was a full year, 365 days, following the last day of radiation treatment on December 5, 2011.  Dr. Marur told me that with these results, I wouldn't need to see her for six months.

Later in the day I saw my head and neck surgeon on my treatment team, Dr. Christine Gourin.  Dr. Gourin was the first doctor that I saw at Hopkins on August 5, 2011, following the fine needle biopsy of my swollen left high cervical lymph nodule in Costa Rica, the lab results of which, "findings compatible with metastasized squamous cell carcinoma" (translation from Spanish), prompted my wife Damaris and me to fly to the Washington DC/Baltimore area on August 2 for the best further diagnosis available and treatment if necessary.  Dr. Gourin gave me a copy of the preliminary radiologist report of my PET scan (not yet reviewed and signed by the attending radiologist) and examined by mouth, throat, and nose, stating that my tissues had healed well from the treatments.  She, too, said that I didn't need to return as early as three months, but recommended I return for follow-up in four months.  Because she was the first doctor on my treatment team who examined me in August of last year, she's considered my primary doctor for my treatment team, so I suspect that I'll follow her recommendation.  Dr. Gourin took a good look at my teeth and commented on the importance of special dental care because of my reduced saliva production caused by radiation effects on my salivary glands.  Saliva plays a vital role in maintaining dental health.  Finding a dentist in Costa Rica who is thoroughly knowledgeable of dental care for patients who have had radiation treatment of their mouth and jaws is a top priority for me upon my return to Costa Rica on December 13.

My final appointment on Tuesday was with my radiation oncologist, Dr. Harry Quon.  Dr. Quon also examined me, and marveled again, as he had on August 28, how well the tissues of my mouth, throat and nasal cavity had recoverd from radiation.  He commented to his resident, Dr. Shibaja (Hopkins is a teaching hospital, and Dr. Shibaja inserted and manipulated the endoscope in my nasal cavity as Dr. Quon coached him), that the still-palpable left high cervical lymph nodule had shrunk since August, and that my treatment team had opted against radical neck dissection (surgical removal of neck lymph nodules, once standard practice for level-IV metastasized head and neck cancer) and that my case was included in a research paper by him and others on the topic currently under review.

Once again, our daughter Raquel drove me to Hopkins and accompanied me through the day.  It's been great to be able to spend some time with her again.  Returning less frequently for follow-ups at Hopkins has a down side--seeing Raquel less frequently.  Maybe I can spend some of the money saved by traveling less frequently to Hopkins by paying for Raquel to go visit us in Costa Rica.

This Saturday, December 8, I'll fly to Chicago to visit our son Tim and daugher-in-law Bret in Skokie.  Bret's due date of our future grandson Oliver was December 2, and Damaris flew there on November 15 to help Bret in the final days of her preganancy and first days of motherhood.  I hope that Ollie is born between now and my flight back to Costa Rica.  I miss Damaris, and Tim and Bret, so I'm looking forward to seeing them in Skokie, but as might be imagined, the prospect of getting to see and hold my first grandson is totally awesome!

Follow-up PET Scan August 28, 2012, Still No Cancer

As I noted in my blog about my May 6 PET scan and doctors visits, Dr. Gourin decided that she wanted to see me every two months and wanted me to have another PET scan in five months.  Since I was interested in consolidating travel from Costa Rica where I live to Baltimore as much as possible, because of the high cost, I ended up scheduling my subsequent PET scan and visits with doctors for the same day, August 28.  My PET scan that day showed no abnormal positron acquisition, and Drs. Gourin and Quon seemed very positive about the results nine and a half months post-treatment.  Dr. Marur wasn't available that day because she was out of the country.  Drs. Gourin and Quon were very pleased with the recovery of the tissue that had been irradiated in my mouth, throat, and nasopharanx; Dr. Quon stated that it wasn't evident that I had even undergone radiation therapy.  My lymph nodule high on the left side of my neck near the angle of my jaw (high-cervical lymph nodule) has remained palpable but seemingly unchanged post-treatment, and both doctors are quite confident that it is a "burned-out" nodule, as Dr. Quon referred to it on May 6.  Both doctors recommended that I return to Johns Hopkins for another PET scan and for them to examine me in December, which would be one year post-treatment.  That visit is now scheduled for December 4.  I also saw speech and swallowing therapist Donna Tippett, who strongly recommended that I continue the swallowing exercises that she had given me during my treatment and that I have been continuing, although not as frequently as she recommends.  I shared with her that I don't really experience problems swallowing, with the exception of needing to drink some liquid to help swallow dry, crumbly foods, such as bread.

I continue to experience dry mouth, but it appears that my saliva glands are slowly recovering, because keeping a water bottle handy 100% of the time isn't as essential as formerly.  Nevertheless, I try not to leave home without it.  I still awake too frequently during the night with a very dry mouth, no doubt because my mouth opens as I sleep and my throat dries out as I breathe.  Also, if I engage in fairly active exercise, which I do three times/week playing badminton outside with friends, my throat dries out quickly if I'm breathing through my mouth.  I purchased some packs of Biotene Dry Mouth gum while in the States for my last follow-up visit, and that helps greatly while exercising vigorously.  I've learned that the effect of the gum last longer if I resist the temptation to take sips of water, apparently because the water washes the enzymes that are in the gum down my throat.  The gum contains enzymes that supposedly help the damaged salivary glands produce saliva.

I enjoyed being able to spend time with our daughter Raquel and see the new apartment that she shares with her fiance Alex in Alexandria, VA.  She drove me to Baltimore for my scan and doctors visits at Hopikins, and accompanied me for my visit with Dr. Quon.  I greatly welcomed her company, because for some reason I was nervous about what the PET scan would find.  Raquel and I went on a short sail one evening on the Chesapeake Bay skipjack Minnie V. on the Potomac River out of Alexandria, owned by the Potomac Riverboat Company.  I then flew to Chicago to see our son Tim and daughter-in-law Bret and their new apartment in Skokie IL.  We had a fun afternoon at the last day of the Chicago Jazz Festival in Grant Park.  They're expecting our first grandson, Oliver, whom I hope to meet on the way back to Costa Rica from my Dec. 4 visit to Hopkins.  I'm hoping that Raquel will be able to accompany me to Chicago to meet her first nephew.

Follow-up PET Scan May 6 - Still No Cancer

Following my PET scan on March 5, three months following the end of my seven-week combined chemo-radiation treatment, Dr. Christine Gourin, who first diagnosed my left tonsil cancer on August 5 and biopsied my tonsil and nasopharanx on August 12, requested that I return to Hopkins in two months for a follow-up PET scan because the remains of my high cervical lymph node to which the primary cancers had metastasized "lit up," although emitting positrons at a level below what Hopkins specialists consider indicative of cancer presence.  A PET scan at Hopkins on May 7 still found no indication of cancer, but the remains of the same lymph node "lit up."  Dr. Gourin told me that standard practice used to be to surgically remove all of the lymph nodes on one or both sides of the neck with metastasis of head and neck cancer to them, but her experience had shown no increase in survival with such radical neck dissection.  She told me that she wanted to monitor the remains of the lymph node and see me every two months.  The lymph nodes on both sides of my neck had been irradiated along with my left tonsil and nasopharanx cancers during my seven weeks of radiation treatment from October 17 to December 5.  Concurrent chemotherapy with carboplatin had continued to shrink the tumors and increase the lethality to tumor cells of the radiation.  Last week, after seeing the results of my May 7 PET scan, my radiation oncologist Dr. Harry Quon at first recommended that my lymph nodes on the left side of my neck be removed, but after carefully feelng the lymph node that was still palpable, and that had "lit up" again during the follow-up PET scan, said that the node felt "burned out," and agreed with Dr. Gourin's recommendation to continue to monitor it.  On March 6 he had recommended two thyroid tests every six months, which were included in my blood work drawn on May 7; thankfully, these turned out negative.  Other blood test results were also within normal ranges, and my medical oncologist, Dr. Shanti Mathur, agreed with Dr. Gourin and Dr. Quon that the remaining palpable lymph node was probably scar tissue and continue to be monitored.  So I will have to return to Hopkins every two months, and get another PET scan in four to six months.

I greatly enjoyed being able to spend a lot of time with Raquel, and am especially grateful for her picking me up at Washington National Airport, staying with me at our friends' Leroy and Flor de Liz Snyder, driving me back and forth to Johns Hopkins in Baltimore, and especially joining me at my appointments with my doctors to hear the results of my PET scan and their recommendations.  I also enjoyed seeing Leroy and Flor de Liz and their children Cynthia, Kenneth, and Bibiana.  My friends Mark and Bella Smith graciously put me up on the night I flew in from Costa Rica, May 5, and on May 9 and 10 following my Hopkins appointments, and it was great to spend time with them, also.  Mark and I were joined by friends who also work with the USDA Foreign Agricultural Service for lunch on Thursday at the USDA Cafeteria.

On Friday, May 11, Raquel took me to National Airport to fly to Chicago to visit Tim and Bret, where I am now, as always enjoying their company and Chicago's Lakeview neighborhood, CTA transportation, and downtown shopping.  We'll attend a Whitesox v. Detroit Tigers game on Tuesday, where we'll be routing for the Tigers, who have been Bret's favorite team since growing up in Michigan.  I return to Costa Rica on Wednesday, where Damaris, Steve, and Pati have "held down the fort" and welcomed the positive news from my tests at Hopkins.

I continue to be a survivor, thankful for the support of family, friends, and the contributions of modern medical science, all blessings of our Creator.

PET Scan @ 3 months Post-Treatment - No Cancer!

This past Monday, March 5, was exactly three months since my last radiation treatment, and I had a PET scan at Johns Hopkins to determine if there was any cancer remaining in the treated area, or elsewhere in my body.  Great news--no evidence of cancer in my body!

But that's not the full story.  The PET scan did show a "lit up" area, the remains of my left high cervical lymph node that was the most swollen (presumably the largest tumor) and that motivated me in late July to make an appointment with the ear, nose, and throat physician who ordered my original biopsy in Costa Rica.  Being "lit up" means that it contains tissue that was absorbing the radioactive glucose injected into me for the PET scan and that positrons were being emitted and detected by the scanner.  PET is short for Positron Emission Tomography, and involves injecting the patient with a solution of a glucose analog containing radioactive molecules that get released when metabolized by rapidly dividing cells, a key characteristic of cancer cells.  During a PET scan, these cells release positrons detected by the PET scanner.  By Hopkins' criteria, the level of positron release was well below the threshold indicating the presence of cancer, hence the finding that I have no cancer.  My Hopkins doctors believe that the lymph node that "lit up" was still somewhat inflamed from my radiation treatment that ended on Dec. 5.  However, they want me to return in two months for another PET scan to see whether it no longer lights up or if it lights up more.  If the positron absorption level is above the threshold indicating the presence of cancer, they'll consider removing it surgically.  The lymph node shrunk greatly during treatment but remained palpabl at the end of treatment.  I was told that it might continue to get smaller and disappear; however, it was still palpable and apparently the same size at my 6-week follow-up appointment at Hopkins on Jan. 17, when they told me that it would not be unusual for scar tissue to remain after radiation kills the cancer cells in a greatly enlarged lymph node.

In my last blog entry on January 14, I shared my strong desire that my PET tube would be removed at my follow-up appointment on the 17th, but I was greatly disappointed that Dr. Gourin had recommended that I wait for my PET scan to make sure that no cancer remained that might require surgery affecting swallowing.   If the PEG tube had been removed, and I had eventually required surgery preventing me from nourishing myself orally, a new tube would have had to be placed, a surgical procedure.  So I had resigned myself to waiting for my PET scan, hoping the results would convince my doctors to allow removal of the tube.  However, the tube fell out by itself early in the morning of my PET scan as I was giving it its required daily rinse.  On Saturday after my airline flights north, I  had possibly displaced it during extended dry coughing, apparently collapsing the inflated balloon that kept the tube in my stomach and possibly tearing some stomach wall muscles.  So one way or another, the PEG tube is out, which also makes me happy.  My stomach muscles are recovering and my tube incision is healing fast.

My blood tests at Hopkins showed that my hemoglobin, hematocrit, and red blood cell count have all increased considerably since January 16, and my indicators of kidney function remain excellent.  My other blood constituent levels are also within normal ranges.

It's great being able to spend time with Raquel, and visiting Flor de Liz, Leroy, and Bibi Snyder, where we're staying in Huntingtown, MD.  Now that my appointments at Hopkins are over, Raquel and I will enjoy spring weather in Washington DC tomorrow.

I'm attaching an image of my throat and the top of my voicebox, taken from above in my larynx by Dr.Quon with his new Olympus endoscope and copied by him from his system's image logger to my flash drive.  He says that my throat has recovered to the point that there's no sign that the tissues have been irradiated.  My vocal chords are "clenched" because Dr. Quon had askd me to say "eeeee."  The base of my tongue is at the bottom of the image.

Six Weeks Post-Treatment Appointments Next Week - Jan. 17, 2012

Today I fly to Washington DC in anticipation of appointments next week at Johns Hopkins Cancer Center in Baltimore for my 6-week follow-up of my combined chemical and radiation therapy.  My final radiation treatment was Dec.5.  I'm very much looking forward to seeing and spending time with our daughter Raquel, who will pick me up at National Airport and take me to the house of my friend Mark Smith and his wife Bella, in Vienna VA, where I'll stay until Monday, and maybe the entire week.  So far I have appointments at Hopkins only on Tuesday, Jan. 17, so I hope to visit friends who work in USDA in Washington, some in the Forest Service and some in the Foreign Agricultural Service.  And I'm hoping to spend a lot of quality time with Raquel.

I'm also hoping that next week my doctors will approve removal of my PEG tube, which was welcome during the final weeks of my treatment and two weeks after when the sores in my mouth and throat prevented me from eating normally, but which is no longer necessary, because I'm now able to eat pretty normally.  I still have at least one sore in the back of my mouth but that doesn't seem to affect eating.  The greatest remaining radiation effect is reduced saliva production, which requires sips of water to be able to chew and swallow drier foods such as sandwiches.  Munchies such as Cheetos appear to be a thing of the past, at least until my salivary glands recover from radiation bombardment, if they ever do.  Most foods present no problems, other than very spicy food, to which my mouth retains heightened sensitivity.  At any rate, the need to daily flush the PEG tube and place split-gauze dressings around its base after showering, and the prohibition of bathing in the ocean or thermal springs, makes the PEG tube a depressing appendage to my body.  After all, it's summer in Costa Rica (verano, the dry season) and I'd hate to waste it without being able to fully enjoy the beach!  Last week I called my Hopkins radiation nurse to suggest scheduling an appointment for removal of my PEG tube while I'm there.  She alarmed me by saying that, if the G-tube was needed for nourishment during treatment, they generally recommend leaving it in place until three months post-treatment when a PET scan is performed to detect whether there is still active cancer that might require surgical removal.  Apparently the thinking is that the surgery would affect the mouth and/or throat and therefore the patient's ability to nourish him or herself by mouth.  The thought of having to continue to maintain an otherwise unused PEG tube for another six weeks makes me depressed.  I suspect that contributing to the depression is vocalization by the nurse of the possibility that my arduous treatment might not have totally killed the cancer cells.  This in spite of reading in National Cancer Institute literature that cancer cells continue to die up to a year following radiation.  I pray that Dr. Quon, Dr. Marur, and Dr. Gourin find consensus that my PEG tube can be removed.  The risk would be that if a PEG tube were subsequently needed because cancer remained and surgery to remove it would impair normal eating, that additional minor surgery would be required to put in a new one.

I return to Costa Rica from the States next Saturday, Jan. 21, so this is a short, but expensive, trip.

Treatment's Over! - December 9, 2011

I'm seriously overdue with this new blog entry.  This past Monday I received my last radiation treatment, number 35.  My last chemo treatment was the previous Tuesday.  So my treatment regime is terminated.  It's too early to say whether I'm cured; the first indication will be what's found three months after the end of my treatment when I undergo a PET scan.  The scan will show if there are any groups of cancer cells.  If none are seen, then I'll possibly be cured.  But I believe that to be considered cured I have to have several "clean" PET scans.

Treatment side effects held off long enough for me to be able to eat some of Thanksgiving dinner, which was a very nice affair at the Snyders' with their three children present, including Kenneth who is attending a prep school in northern Alabama to prepare him to enter the Coast Guard Academy next year.  Raquel and her fiance Alex joined us, bringing a tofurkey which they found to be scrumptious.  I tried a small sample and admit that the flavor was quite good.  As treatment continued, the side effects accumulated, to the point that I have been on a liquid artificial diet through my G-tube for going on two weeks.  The side effects consist mainly of sores in my mouth and my throat that prevent me from being able to chew and swallow food.  I also take strong pain medication to help me deal with the discomfort caused by the sores and difficulty in moving phlegm from my airway.  I can attest to the veracity of the reports that treatment side effects continue to worsen for two or more days after the last radiation treatment, but I believe that I have now rounded the bend and am now on my way to gradually feeling better.

Damaris and I moved out of Hope Lodge this past Tuesday, with Raquel's assistance.  We had become some of the "old folks;" long-time residents of Hope Lodge.  Most of the people who were there when we arrived in mid-October ended treatment and moved home, and new patients and caregivers had moved in.  There's a strong bond among residents because of the shared challenge presented by cancer.  So when patients and their caregivers moved out there were always mixed emotions: joy because the patient had finished his or her treatment, and sadness because new friends were moving back to their home life.  All in all, the Hope Lodge experience was an unexpected pleasure encountered as part of my cancer treatment.

Now Damaris and I are preparing to return to Costa Rica.  We fly on Dec. 14 on Continental through Newark.  It will be wonderful to be back home and to be able to celebrate Christmas with Steve and Pati, as well as Damaris' family.  We'll miss being relatively close to Raquel, and within a day's train ride of Tim and Bret.  I'll be really glad to see our dogs Maya and Laika.  The week of Jan. 15 I'll return to Hopkins for follow-up exams, and hopefully for my G-tube to be removed.  I'm required to have been feeding myself exclusively by mouth for a week or more for the G-tube to be removed.  That will be a goal to work toward upon our return home.  Then three months after treatment ended I'll return again for a PET scan.  Hopefully that will show that the entire saga had the desired outcome.

Beginning of Treatment Week 5 - Monday, November 14

I began my fifth of my seven-week treatment program with today's blood tests followed by radiation.  The blood tests are needed to calculate my carboplatin dose for tomorrow's chemotherapy, based on my kidney function.  The treatment is becoming pretty much a regular routine.  Tuesdays, the days that I get chemo, have so far been pretty much of a disaster, schedule-wise.  The first week was the worst, because my bloodwork was begun that same day and my chemo had to wait the two hours for the lab results in order to properly dosify my carboplatin.  Since then, I get my blood drawn on Mondays so that the results are ready on Tuesday morning.  However, until last week, my chemo wasn't done in time for my 11:00 a.m. radiation appointment, so I had to go down two floors to the underground radiation center pushing an IV pole and with a catheter running to my Power Port in my upper right chest.  Last week Pierse, my medical oncology nurse, started my liter of saline more or less on time, and the anti-nausea drugs and my carboplatin were dripped in consecutively almost in time for me to make my radiation appointment.  The week finished off joyfully, because one of our Hope Lodge family got to ring the gong in the Hopkins radiation suite signaling the end of her treatment.  At eleven o'clock, a nurse had Ginny hold up one of her grandchildren to ring the gong eleven times to mark the hour when the armistice was signed.  He began playing on a keyboard and singing "America The Beautiful."  Not being shy to join others in song, I did so, and learned that the effects of the radiation on my larynx have ruined my voice, I hope temporarily.

Side effects of treatment are growing, principally open sores like canker sores on the left side of my tongue and in most of my throat, but concentrated on the left side because my radiation is targeted there to kill the cancer cells in the tumor on my left tonsil.  My neck lymph nodules and the cancer in my nasopharanx (upper back of nasal cavity) are also getting irradiated, but I'm not sure what side effects that radiation is causing.  The radiation to my upper neck lymph nodules might be contributing to the lessening of my saliva production and thickening of what saliva I do produce.  That, coupled with the sores on my tongue that make moving food around in my mouth painful, make eating an increasingly slow and painful event.  So far, I haven't resorted to the feeding tube in my stomach for nutrition or to pre-medicating with Oxycodone a half hour before meals so that I can chew and swallow with subdued pain.  It's very important to keep swallowing food so that the muscles associated with swallowing don't atrophy; so far I'm handling the pain and "handicapped tongue."  I don't want to become a swallowing cripple!  Another side effect of reduced saliva production is increased susceptibility to tooth decay, so I began nightly applications of fluoride gel to my teeth in specially fitted "fluoride trays" two weeks before my treatment started to increase their decay resistance.  I also brush immediately after every meal, and floss once a day.  So far I've had no noticeable loss in sense of taste, but I have to stay away from tomato sauce, sweets and food with sugar, onions and food cooked with onions, and other acidic foods, because they get the nerves firing in my mouth sores.  We'll see how long I can taste; my radiation oncologist said that I'd probably lose my sense of taste for a year.

Hope Lodge celebrated its 24th anniversary last  Saturday, which was also Damaris' birthday.  A good number of survivors who had been Hope Lodge beneficiaries came to the event.  Damaris and I joined the festivities and chatted with a number of people who had gone through cancer treatment and are now considered cured.  A very sad and touching exception was the mother of a former resident who hadn't won his battle with cancer.  Kevin Minthorne Wolf, 1963-2001, occupied room number 216, which is also ours and named in honor of him.  Kevin had aspirations of becoming an airplane pilot, and his family hung a mobile of small airplanes in the corner by a small frame with photos of him on the wall.  We were asked by the Hope Lodge director if we would mind if Kevin's mother spent some time remembering her son in our room.  Of course we agreed, and Mrs. Wolf had her half hour of solace with the small memorial and the room her son had occupied during his ultimately unsuccessful cancer treatment.  Some of the current resident patients have been coming here periodically for years because they're receiving palliative care, one has had to have a leg amputated and remains hospitalized with little daily change according to his elderly caregiver wife who spends every day with him in the hospital, and another has had a brain tumor four eight years, has undergone five surgeries, three while remaining awake, and recently returned home without a definitive prognosis for cure or recommendations for further treatment.  So I realize how lucky I am to have a prognosis of 90% chance of recovery with a well-established treatment protocol.

Our weekend ended on a joyful note with Raquel's visit on Sunday.  She drove us down to Annapolis, where we enjoyed watching the Naval Academy Colgate 26's sailing in a steady breeze before we retreated to the Hard Bean Cafe for some coffee and a snack while Raquel showed Damaris how to access songs from iTunes on Damaris' birthday present, an Ipad 2.  So now Damaris is a geek and I'm happy that her present from Tim, Steve, Raquel and me will keep her busy exploring its capabilities and all that's on the web for a long time.

Saturday, October 29 - Two Weeks of Treatment Under My Belt

I've now finished two weeks of chemoradiation, treated daily on Hopkins' Cancer Center Linear Accelerator #3, an Elekta Infinity, and chemotherapy, receiving carboplatin through an IV drip on Tuesdays.  That schedule will continue through December 5, for a total of 35 radiation treatments.  Thanksgiving week I'll only receive four radiation treatments Sunday through Wednesday, since Hopkins will be closed for the long holiday weekend.  I'm beginning to experience side effects of the treatment, principally dry mouth, soreness in the tissue over the joint of my left jaw, which is more acute when opening my mouth wide, and tenderness on the left side of my tongue.  I expect these are side effects of irradiation of my left tonsil.  I can still taste, but that will probably go soon and not return for a year after treatment.  My daily radiation treatment takes about 15 minutes. 

Taylor and M.E. placing my  mask on the Infinity table

Two therapists fasten the face mask firmly over my head and shoulders to the Infinity's table and leave the room as a radiation shield door closes behind them.  The machine does an initial low-intensity CT scan, which compares my location to the 3-D image from the scan taken weeks ago while I was fastened under the mask for computer simulation that was used by my radiation oncologist to plan my radiation treatment.  The machine makes minute adjustments to its table to precisely align me so that I'm located precisely to target my tumors with lethal radiation and minimize effects to healthy tissue.  After locking down the table, the Infinity's radiation head projects 115 precisely shaped, intensity modulated, radiation fields from nine positions in a 270-degree arc beginning behind my right shoulder around my head and neck to behind my left shoulder.  Lethal radiation doses only occur in target tumors where multiple radiation fields from different positions intersect to give a cumulative high dose that destroys the DNA of the cancer cells, killing them.

There is a therapeutic camaraderie during the daily treatment regimen among the patients and their caregivers who are scheduled before and after me with whom we share the waiting area and chat about all sorts of topics, from kids and grand kids to apple butter preparation to how many weeks of treatment have passed or remain.  Several of them also are staying in Hope Lodge and ride the shuttle with us to and from Hopkins.  Yesterday Damaris and I hung around for another patient of Dr. Quon to ring the gong hung in the treatment area, placed for patients to strike following their final treatment.  I doubt my eyes will be dry when it's my turn on Dec. 5.

Raquel moved us into Hope Lodge on Monday afternoon, Oct. 17 (http://www.cancer.org/Treatment/SupportProgramsServices/HopeLodge/Baltimore/index).  There are 26 rooms, usually occupied by a cancer patient and their caregiver.  The rooms are reasonably spacious, with beds donated by Simmons--essentially everything in Hope Lodge is donated.  A community kitchen has four cooking stoves and microwaves, four refrigerators, four sinks and dishwashers, and many labelled cabinets and drawers with glasses and cups, plates and bowls, pots and pans, utensils, etc. A designated space in a refrigerator and a cupboard for dry food storage is assigned to each room in the community kitchen.  The space is somewhat limiting, but we've learned to make it work.  A couple of times each week a group comes in to cook dinner for all of us.  Last Thursday two couples for Beth El Synagogue cooked lasagna and cauliflower, potato and carrot soup, green salad, coleslaw, garlic bread, and loads of cookies and brownies for dessert.  There's a strong bond among us patients living together and fighting cancer, and I wouldn't be surprised if we keep in touch with some of our fellow residents following treatment.  Some may come visit us in Costa Rica.  Hope Lodge provides housing to cancer patients from all Baltimore Hospitals.  About half are receiving treatment at the University of Maryland Medical Center which is just south of us.  Most of the other half are patients at Hopkins--a Hope Lodge shuttle takes us back and forth for treatment.  At least one resident is a patient at Sinai Hospital.  Our home in Costa Rica is not the farthest--an elderly woman from Sierra Leone resides here with her caregiver granddaughter.  There's also a couple from St. Croix, U.S. Virgin Islands and couples from the Florida Keys and Cincinnati.  Most are from the Chesapeake Bay area and go home on the weekends, so it's very quiet here right now.  We're blessed to be able to stay in this comfortable place for free and find new friends, all who share the common challenge of cancer, during the seven weeks of our treatment.

Sunday, October 16 - Radiation Starts Tomorrow

It's been two and a half weeks since my last post to this blog.  The week before last, Damaris and I traveled by train to Chicago to visit our eldest son Tim and our daughter-in-law Bret Nugent.  We greatly enjoyed being with them, especially celebrating Tim's 30th birthday while we were there.  We were blessed by fantastic weather the entire week.  However, the 24-hour train rides in coach going and returning were a bit much.

The start date for my concurrent chemoradiation has been changed from Oct. 11 to tomorrow.  I'm glad that my treatment is finally beginning, because we left Costa Rica to seek top-quality diagnosis and treatment for my cancer at Johns Hopkins two and a half months ago .  On the other hand, I have some trepidation about the upcomng treatment, since I've been well-briefed by Hopkins staff, and read up on my own, about expected and potential side effects from my treatment.  Some potential impacts, while rare, are very severe, but I have faith and commitment that a positive attitude and proactive measures will avoid or palliate them.  Last week Damaris and I met with a Hopkins speech therapist who recommended specific exercises to strengthen the muscles used for swallowing.  The day before, a feeding tube was placed in my stomach in case treatment effects on my ability to swallow inhibit my nutrition.  I hope I won't need the feeding tube, but having it in place provides a level of insurance that I can avoid excessive weight loss during my treatment.  On Friday I had a "dry run" on the linear accelerator (LAC) that will irradiate my tumors, during which the operators calibrated the LAC to ensure that the machine would precisely target the cancerous tissues programmed by my radiation oncologist, Dr. Quon.  As far as I'm concerned, they can't be too careful!

Also on Friday, Damaris and I learned that a room is available for us in Hope Lodge, the American Cancer Society's facility near the University of Maryland medical campus for cancer patients from any of Baltimore's hospitals who are actively receiving cancer treatment and live more than 40 miles away.  Since we live in Costa Rica, Damaris and I qualify hands-down on the latter requirement!  Our lodging in Hope Lodge will be at no cost--please consider the American Cancer Society for your charitable contributions--they work with the National Cancer Institute and medical research facilities world-wide to find cures for all types of cancers.  These collective efforts have produced treatment protocols such as the one I will be benefiting from over the next seven weeks.  The Hope Lodge address is 636 W. Lexington Street, Baltimore MD, 21201 and the phone number is 410-547-2522 (http://www.cancer.org/Treatment/SupportProgramsServices/HopeLodge/Baltimore/index).

As I watch and sing along with "We Shall Overcome" at the end of the dedication of the Martin Luther King, Jr. Memorial on the National Mall in Washington, DC today, I can't finish this blog without recounting my remarkable experience in the Kimmel Cancer Center the afternoon of Thursday, Sept. 29.  As I left the elevator in the lobby following hydration in Outpatient Medical Oncology to help my kidneys recover, I encountered 30-40 doctors, nurses, other medical staff, and a few cancer patients seated facing a group of musicians led by a white-haired black gentleman with a microphone.  I learned that he was Baltimore native Damon Harris, who had joined The Temptations as tenor in 1971.  As I took a seat, Harris was recounting his experience as a 14-year Hopkins prostate cancer patient and survivor, having been told when first diagnosed that he would live no more than a year and a half.  He began his performance with a Temptations song, accompanied by violin, bass, cello, saxophone, piano, and electric guitar, after which he asked his "brothers and sisters" to raise their hands.  It took us cancer patients in the room a few moments to realize that he was talking about us.  I raised my hand with the 4-5 other patients present.  Harris then sang "Papa was a Rollin' Stone, which got us all clapping our hands to the rhythm.  He then asked us patients to go up front to join hands with him, singing a more recent song he had written as we were holding hands.  Finally, he commented that there was a Negro spiritual often sung in black churches, and that the congregations always stand arm-in-arm as they sing together.  He asked all present to stand, hold hands, and sing along.  The instrumental accompaniment began to play, and Harris began to sing "We Shall Overcome."  I quickly overcame my shyness and joined him, along with others, holding back not at all as the new significance of the words to us cancer patients hit home, bringing tears to my eyes.  It was an unforgettable experience.

Wednesday, September 28 - Adjustment to Treatment Schedule

The beginning of my combined radiation/chemotherapy has been postponed one day and is scheduled to begin Tuesday, Oct. 11.  Yesterday I had an appointment with my oncology nurse during which my blood was checked and a liter of saline was dripped into me via my mediport.  The blood tests showed that my kidney function continues to improve slowly, but not to the level from before my adverse reaction to the cisplatin of my first cycle of inductive quemotherapy.

I still do a double-take every time I look into a mirror and see my bald pate and skimpy beard.  Any recovery of my hair loss caused by my first cycle of inductive chemotherapy will likely be set back by the effect of the carboplatin, the cancer drug that will likely be injected once a week in combination with my radiation therapy beginning on Oct. 11.

Damaris and I are looking forward to our train trip to Chicago to visit Tim and Bret.  We anticipate some colder weather, but that will be more than made up by the warmth of seeing them and being able to celebrate Tim's 30th birthday together with them.  When we return from Chicago, Raquel will help us move from the Snyders' to wherever we will stay the first days of my radiation treatment.  Hopefully we can move directly into Hope Lodge.

Friday September 23 - Schedule Determined for Combined Radiation/Chemotherapy

Since my September 17 blog posting, I have lost most of the hair from my head.  The day before yesterday I agreed with Damaris that what remained made it evident that I was undergoing this common side effect of chemotherapy, and she shaved off the remaining hair with a hair trimmer.  So I no longer recognize myself when looking in a mirror.  But I don't dwell on my changed looks, putting it out of my mind as I go about my daily business.  I'll see if I can attach a new photo with my bald pate to this blog entry to give you all a laugh.  Another piece of news is that yesterday I realized that the sense of touch in my left ear had returned.  Apparently the reduction in size of the tumorous high neck lymph node had relieved the compression on my facial nerve that had caused the numbness.

Yesterday I had my radiation planning appointment at Johns Hopkins--my combined radiation/chemotherapy is scheduled to begin on October 10, Columbus Day.  The appointment included a CT scan with my restraining mask that was fitted on August 25 holding my head and shoulders tightly to the CT table.  The CT scan will show Dr. Quon, my radiation oncologist, the exact size and location of the tumors in my left tonsil, nasopharanx, and neck lymph nodes to which these have metastasized.  He will determine precisely where the powerful X-ray beam of the linear accelerator will be aimed and how its intensity will be modulated to have maximum impact to kill any remaining cancer cells and to protect non-target tissues as much as possible in order to minimize side effects.  The mask is essential so that my head and neck are held precisely where the radiation beam will be focused.  Damaris and I met with Dr. Quon's oncology resident, Dr. Jing Zeng, who went over possible side effects, from common to uncommon, rare, and extremely rare, and she and I signed the form in which I consent to undergo the treatment and attest that possible side effects have been disclosed to me.

Likely short-term reactions to combined radiation and chemotherapy are reduced production of saliva and resulting difficulty swallowing and increased susceptibility to tooth decay, sore throat, reddening of the mucous membrane of my mouth and throat, ulceration of this mucous membrane, skin redness and irritation in the area treated, and difficulty or pain when swallowing.  The Hopkins Cancer Center recommends placement of a feeding tube so that at least a minimum level of nutrition can be maintained if and when chewing and swallowing food become too difficult.  It looks like the feeding tube will likely be placed during the week of October 10, before the worst side effects of radiation manifest themselves.

Starting October 10, my combined radiation and chemotherapy will last until Thanksgiving or a day or two into the following week.  It's very unlikely that I will be able to enjoy eating Thanksgiving dinner, which will likely be at the Snyders, where we'll hopefully be jointed by Tim, our daughter-in-law Bret, and Raquel.  But trust me, I'll be very Thankful to our Creator for being with family and close friends, and for being close to the end of my treatment and hopefully being cured.  My only regrets will be that our son Steve and daughter-in-law Pati won't be with us.  But I'll also be very thankful that they're taking care of our home in Grecia, Costa Rica, and our dogs Maya and Laika.

Meanwhile, Damaris and I will depart Washington DC by train next Friday to visit Tim and Bret in Chicago, returning to DC on October 9, the day before my next treatment begins.  Hopefully, we'll be able to get lodging in the American Cancer Society's Hope Lodge in Baltimore for the duration of my treatment.  I was placed on the Hope Lodge waiting list today, as well as the list for the Hopkins Hackerman-Patz Patient and Family Pavilion.

Saturday, September 17, 2011 - New Treatment Schedule

It's been nine days since my last blog.  I had an appointment yesterday with Dr. Marur, my medical oncologist, in which she examined my neck lymph nodules to which my tonsil and nasopharanx cancers had metastasized, and determined that their size had diminished significantly due to my first inductive chemotherapy cycle.  This prompted her to arrange for us to join Dr. Quon, my radiation oncologist, in another examination room equipped with a nasal endoscope.  Dr. Quon shared Dr. Marur's enthusiasm about the degree to which both my primary and secondary tumors had shrunk.  Their consensus was to forgo the second cycle of inductive chemotherapy and to proceed directly to my combined radiation/chemotherapy.  I now have a radiation planning appointment scheduled for Thursday, September 22, which my radiation/chemo therapy should follow two weeks later.  This means that my seven-week therapy should be completed the week before Thanksgiving, a week before it would have ended under the original schedule.  That was very good news.

One reason for avoiding the second cycle of inductive chemotherapy was the adverse effect that cisplatin had on my kidneys, enough to send me to the Johns Hopkins Cancer Center inpatient ward for four days.  My kidney function, judged by creatinine levels, has slowly improved, but not sufficiently for Dr. Marur and Dr. Quon to recommend submitting me to another cycle using cisplatin, or even its more benign related drug, carboplatin.  They also recommend that carboplatin rather than cisplatin be administered weekly in place of cisplatin during my combined radiation/chemotherapy.  The radiation planning appointment will include a CT scan without contrast (because of recovering kidney function) and an MRI to precisely map out the three-dimensional location of remaining tumors in order to focus the radiation for maximum impact on cancerous tissue and minimal impact on healthy tissue.

Damaris and I moved out of the Hackerman-Patz Patient and Family Pavilion on Tuesday, September 13.  The facility is very modern and convenient, located across Orleans Street from the Weinberg Building where the Hopkins Cancer Center is located.  However, the nightly cost was $60, which adds up as the days go on, and anticipating the thousands of dollars of cost for my co-insurance share of my cancer treatment, we didn't feel that my need to be so close to Hopkins justified the expense.  We were very fortunate to be able to move into the home of Mary Rogers, a friend since childhood of my sister-in-law, Burch Tracy Ford in the Bolton Hill neighborhood of Baltimore.  Mrs. Rogers was very gracious to host us at no cost in her traditional Baltimore row house, replete with antique heirlooms, some of which date back to the Revolutionary War.  The location was quite close to Penn Station, where we could catch a frequent shuttle running between Johns Hopkins University's Homewood campus to the north and the JH Medical campus.  Finding out that I wouldn't go through a second inductive chemotherapy cycle and would have only the one radiation planning appointment over the next three weeks, we moved out of Mrs. Rogers' house and back to our close friends the Snyders 60 miles south of Baltimore yesterday afternoon, with the help of our daughter, Raquel.

I feel physically more "normal" every day, and knowing that the end of my therapy is a week closer and a second cycle of chemo is avoided greatly improves my emotional state.  On the down side, but not unexpected, is the loss of my head and body hair.  The hair on my head is "shedding" quite rapidly, particularly noticeable when I shower and shampoo.  I expect to be pretty bald in not many days.  But it will grow back.  Fall has made a first foray into the Central Atlantic region, and hair loss makes me glad that I brought a couple of my favorite caps with us from Costa Rica.  I expect to need them soon, especially if we're able to go visit our son Tim and daughter-in-law Bret in Chicago during the two weeks between my next appointment and the beginning of my next therapy.  It's nice that hair loss is my worst worry right now.  And this is a very special day, Damaris' and my 30th wedding anniversary.  I am blessed by a wonderful wife and three beautiful children, as well as two wonderful daughters-in-law and a very nice "yierno" (Raquel's boyfriend proposed to her a few months ago).  Thank you all for your support and prayers, which have produced a very positive outcome.

Thursday September 8, 2011 - Adverse Effects to Chemo

My first induction chemotherapy cycle was fairly uneventful, while the drugs were being infused.  I remained connected to the high-tech pump infusing 5-FU into me over 96 hours.  Johns Hopkins had arranged for a homecare nurse to teach me to connect saline bags to the tubing connected to my mediport, and had dropped off four 1-liter bags and associated equipment such as saline flush syringes, etc.  Hydration was vital so that my kidneys would flush the cancer drug byproducts from my body, particularly the cisplatin, which is hard on the kidneys.

My brother Brian had contacted my sister-in-law Burch's brother, Dan Tracy, about the possibility of Damaris and me staying with him and his wife in their townhouse on the Baltimore waterfront, and we moved out of McElderry House to the Tracy's on Wednesday.  Dan and his wife Veronica were very welcoming and made us comfortable in their nice townhouse that backs up to a yacht marina.  It was great to spend time with them and enjoy the waterfront setting.  Damaris took many walks along the waterfront, and I joined her to get some exercise in the historical setting.  On Friday evening, Raquel drove to stay with us at the Tracy's.

On Saturday, after another homecare nurse disconnected the tubing from my mediport and picked up the diffusion pump, Raquel drove us to the Snyder's in Huntingtown.  I felt glad to be free of the diffusion pump.  On arising Sunday morning, I felt feverish and run-down, and had a headache.  With no appetite and no energy, and a persistent low fever and headache, I called the answering service for the on-call Johns Hopkins medical oncologist.  Dr. Konig called back, I related my treatment history and conditions, after which he recommended that I take Tylenol for my fever and headache.  The Tylenol didn't eliminate either the fever or the headache.  On Monday, which was Labor Day, my fever and headache were still with me, and I still felt exhausted.  I called the Hopkins medical oncology answering service again, and was called back by Dr. Santamaria, who recommended that I travel to a local emergency room for a complete blood count lab test.  Flor de Lis drove me to the near-by Calvert Memorial Hospital at about 2:00 p.m.  Being a holiday, the emergency room was short-staffed, but eventually my blood was drawn.  My red and white blood cell counts were a little low, but not much, but my kidney function indicators were poor.  The local doctor conferred with Hopkins, and I was asked if I preferred to be admitted to Calvert Memorial or travel to Johns Hopkins.  I chose the latter, since I'd been receiving treatment there and they had all of my records.  That required an ambulance trip to Baltimore, where I arrived back at Hopkins at 1:00 a.m. Tuesday.  I was admitted to a hospital room in the Sidney Kimmel Comprehensive Cancer Center, on the fifth floor of the Hopkins Wieinberg Building.  With blood tests, EKG, chest x-ray, etc., I didn't get to sleep until 5:00 a.m.

It's now Thursday, September 8, and my kidney function is still poor, although the floor doctor this morning informed me that my BUN level, another measure of kidney function, had improved 10 points.  A good sign is that I'm peeing fine, so my kidneys are working well.  They just need to recover from the damage from the high dose of cisplatin.  Other side effects expected of some or all of the three cancer drugs that I received are also occurring, most noticeable pain and inflammation of tissues in my throat and on my tongue.  I'm receiving pain medication which helps with talking, chewing, and swallowing, all of which are impaired when the pain builds.

On Tuesday, Raquel had come to Baltimore and we had all talked with a Hopkins social worker about lodging.  Fortunately, a room was available in Hopkins' Hackerman-Patz Patient and Family Pavilion, a facility specifically for housing out-of-town cancer patients and their families during hospital stays and/or outpatient treatment.  Raquel stayed in the room with Damaris Tuesday night, and Damaris can remain there while I'm in the hospital.  It's a blessing, and a great comfort to me, that she's here as my care-giver and to provided emotional support, and that a room was available in Hackerman-Patz, which is directly across the street from the Weinberg Building where my hospital room is located.

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.