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."