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.