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.
Friday, December 9, 2011
Monday, November 14, 2011
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.
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, 2011
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.
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| Taylor and M.E. placing my mask on the Infinity table |
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, 2011
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.
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, 2011
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.
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, 2011
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.
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
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.
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
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.
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.
Tuesday, August 30, 2011
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."
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."
Tuesday, August 23, 2011
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.
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.
Thursday, August 18, 2011
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.
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.
Friday, August 12, 2011
Steps Toward Treatment - Week of August 7 Post 3
Damaris and I attended the Head and Neck Cancer Multidisciplinary Clinic this morning in the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore. It started off with an interview of my record and medical history by Dr. Shanthi Marur, Medical Oncologist on the Mutlidisciplinary Team. She took what she found and briefed the other clinicians and specialists in another room where they were reviewing results of my tests and scans, after which they then joined Damris and me in the examination room. Present were Dr. Wayne Koch, head and neck surgeon and Director of the Head and Neck Cancer Center, Dr. Harry Quon, Radiation Oncologist, Sarah Bonerigo, Physician's Assistant in Medical Oncology, Heather Starmer, clinician in speech pathology, and the Multi-D Clinic Coordinator, Amy Brady, an oncology nurse. A nutrition services specialist, Mary Eve-Brown, will also be on the team overseeing my treatment and recovery.
My nasal passages and cavity were anaesthetized and a fiber optic endoscope was inserted so the group could view my tumerous tonsil, throat, and nasal cavity. We were told that the PET scan showed that my tonsil and lymph nodes on both sides of my neck were cancerous, but that there was no sign of cancer anywhere below my clavicles (collar bones), which was very good news. They told us that the fine-needle biopsy taken by Dr. Gourin last Friday had revealed a marker for human papilomavirus, but didn't extract enough tissue to positively confirm presence of the virus as the likely cause of my cancer. They also said that the PET scan had revealed another area on my nasopharanx (upper posterior area of my nasal cavity) that absorbed radioactive glucose and re-emitted radiation, a possible sign that the area is cancerous. They viewed the area with the endoscope, and recommended biopsy of the cancerous tonsil and the new possibly cancerous area to to obtain enough tissue for confirmation of HPV and determine whether the new area is cancerous. Dr. Quon explained that if the new area were cancerous, it would have to also be treated with radiation, and because of its location that treatment would present greater risk of permanent damage to my salivary glands.
The specialists participating in the Multi-D clinic stated that positive confirmation of HPV would indicate a different treatment regime with a very high success rate with fewer side effects than would be used for cancer from other causes or unknown cause. So they are in consensus that treatment should wait to determine if the tumor is caused by HPV and the status of this new area in order to plan treatment to correctly target and shape the radiation beams from the cancer center's linear accelerator.
Dr. Koch said that he could do the biopsy today, but that he wanted to consult with Dr. Gourin, because she was my initial specialist for my Hopkins consultation. Dr. Gourin was available and did the new biopsies today at noon in the Head and Neck Surgery Clinic of the Hopkins Outpatient Center. The collected samples are being analyzed in the Johns Hopkins lab. Dr. Gourin was quite sure that the area on my nasopharanx isn't cancerous; instead it seems to be a pocket of mucous, possibly in reaction to the cancerous tonsil. More good news.
The results of the biopsy won't be ready until mid-week, and my next scheduled appointment is Tuesday, August 23, so it's apparent that treatment is unlikely to start before the week of August 28. I'm a bit anxious that that treatment get started, to stop cancer growth and eliminate it from my body. But the consensus of the specialists for the additional tests will ensure that I receive the best possible treatment.
Thursday, August 11, 2011
Steps Toward Treatment - Week of August 7 Post 2
Since my post of Monday, I've had an MRI of my head and neck on Tuesday and a PET scan of my body from sinuses to groin, with a more focused PET scan of my head and neck area. A CT scan of my head and neck area with contrast was also done at the same time. That was my first MRI, and the technician's warning that the machine would be loud was no exaggeration, in spite of having been provided with ear plugs.
I just had my appointment with a periodontist recommended by the dentist who examined my teeth and provided a letter stating that my teeth were OK for radiation treatment. In other words, his clearance was a qualified one. The periodontist said that my teeth and gums were fine to go ahead with radiation treatment, but because of the high degree of gum recession on some teeth that I should have a customized tray made to apply fluoride during treatment. That possibility was identified in the Johns Hopkins draft clearance letter but was not addressed by the dentist, so I guess I'll have to get back to him to see if his office can prepare that today.
My appointment for the Head and Neck Cancer Multidisciplinary Clinic was moved up to 9:00 a.m. tomorrow, so Damaris and I will have to get up early to make the drive to Baltimore through rush hour traffic in order to arrive on time. I will hopefully receive a consensus opinion of the head and neck cancer clinicians and specialists participating in the clinic on my diagnosis and treatment. Hopefully, that will be positive; my next post will share what we hear. I'm grateful for your positive thoughts and intercessions enabling me to benefit from the high-quality specialists, technicians, and medical equipment at Johns Hopkins, as well, hopefully, from the lodging at the American Cancer Society Hope Lodge. My charitable contributions have never included the American Cancer Society, but this experience broadens my perspective and hopefully yours, as well.
We continue to be blessed by the friendship of Leroy and Flor de Lis Snyder and their family, and by Raquel's frequent visits.
I just had my appointment with a periodontist recommended by the dentist who examined my teeth and provided a letter stating that my teeth were OK for radiation treatment. In other words, his clearance was a qualified one. The periodontist said that my teeth and gums were fine to go ahead with radiation treatment, but because of the high degree of gum recession on some teeth that I should have a customized tray made to apply fluoride during treatment. That possibility was identified in the Johns Hopkins draft clearance letter but was not addressed by the dentist, so I guess I'll have to get back to him to see if his office can prepare that today.
My appointment for the Head and Neck Cancer Multidisciplinary Clinic was moved up to 9:00 a.m. tomorrow, so Damaris and I will have to get up early to make the drive to Baltimore through rush hour traffic in order to arrive on time. I will hopefully receive a consensus opinion of the head and neck cancer clinicians and specialists participating in the clinic on my diagnosis and treatment. Hopefully, that will be positive; my next post will share what we hear. I'm grateful for your positive thoughts and intercessions enabling me to benefit from the high-quality specialists, technicians, and medical equipment at Johns Hopkins, as well, hopefully, from the lodging at the American Cancer Society Hope Lodge. My charitable contributions have never included the American Cancer Society, but this experience broadens my perspective and hopefully yours, as well.
We continue to be blessed by the friendship of Leroy and Flor de Lis Snyder and their family, and by Raquel's frequent visits.
Monday, August 8, 2011
Steps Toward Treatment - Week of August 7
On the afternoon of Friday, August 5, after returning with Damaris from my appointment with Dr. Gourin in which she diagnosed with tonsil cancer, I received an email from Amy Brady, the coordinator of the Head and Neck Cancer Multidisciplinary Clinic, with attachments including a draft letter for dental clearance. I wasn't surprised that dental clearance was requested, since when my aortic valve was replaced with a bioprosthetic at Johns Hopkins in October 2005, dental clearance was required, for which I had to have a root canal and crown mounted on a lower molar. The need for dental clearance prior to my cancer treatment caused some concern, because a month and a half ago I broke a tooth in Costa Rica, which was repaired with a temporary crown that I hadn't yet had replaced with a permanent one. Today I saw a dentist at the dental clinic in Prince Frederick MD used by my hosts here, the Snyders. Prior to my appointment I called the number for the dentist identified as part of the Multidisciplinary Clinic Team to ask whether a temporary crown would have to be replaced with a permanent one. He returned my call as I was brushing my teeth in the lavatory of the dental clinic office, and said that the principal concern is that radiation treatment lowers the supply of blood to the jaw, making any tooth extraction or restoration much more complicated, at least during a recovery period after treatment. The dentist at my visit today provided a letter stating his opinion that my dental health met the criteria established in the dental clearance guidance provided by the Multidisciplinary Clinic. However, he recommended that I be evaluated by a periodontist prior to my cancer treatment, and an appointment with a local periodontist is scheduled for Thursday.
I was informed this morning by Dr. Gourin's assistant that I'm scheduled for an MRI of my neck area tomorrow afternoon in the Radiology Department of Johns Hopkins Hospital, Aug. 9, and for my PET scan on Thursday afternoon, Aug. 11.
The attachments from Amy Brady included the Guest Acceptance Policy for Hope Lodge, where we hope to obtain lodging during my treatment in the cancer treatment patient lodging funded by the American Cancer Society.
I was informed this morning by Dr. Gourin's assistant that I'm scheduled for an MRI of my neck area tomorrow afternoon in the Radiology Department of Johns Hopkins Hospital, Aug. 9, and for my PET scan on Thursday afternoon, Aug. 11.
The attachments from Amy Brady included the Guest Acceptance Policy for Hope Lodge, where we hope to obtain lodging during my treatment in the cancer treatment patient lodging funded by the American Cancer Society.
Sunday, August 7, 2011
The Beginning - Loss of Left Ear Touch Sensitivity
Somewhere around mid-July, I noticed that the skin of my left ear had lost some sensitivity to touch when washing my face or touching my ear while lying in bed. When I noticed my left lymph node at the bend of my left jaw was quite swollen but not sore, I became sufficiently alarmed to make an appointment with an ear, nose, and throat doctor at CIMA Hospital San Jose, a modern private hospital in the San Jose Costa Rica suburb of Escazú. The hospital is modern and caters particularly to expatriates and wealthy Costa Ricans who want more immediate and modern medical care than they might get from Costa Rica's crowded socialized medical system. The ENT physician whom I saw ordered CT scans of my nasal and throat areas and an ultrasound biopsy of my swollen gland. The biopsy pathologist's report findings were "compatible" with metastasized squamous cell carcinoma. Needless to say, that startled me greatly, and I quickly developed two priority objectives: obtaining the most competent medical care possible for further diagnosis and possible treatment and to do so as quickly as possible. I decided to seek medical care at the Head and Neck Cancer Center of Johns Hopkins Hospital in Baltimore, where I was operated on for placement of an artificial aortic valve in October 2005 and whose medical care impressed me greatly. I made one-way airline reservations from San Jose to Washington Dulles for my wife Damaris and myself for this past Tuesday (Aug. 2), and our daughter Raquel picked us up at Dulles and the next day brought us to our friends' Leroy and Flor de Lis Snyder, in Huntingtown, MD. Last Thursday, Aug. 4, I took the CT scan data and films and pathology slides from CIMA Hospital to Johns Hopkins, and the following day had an appointment with Dr. Catherine Gourin, surgeon in Johns Hopkins' Department of Head and Neck Surgery and member of the Head and Neck Cancer Center physician team. Dr. Gourin diagnosed me as having tonsil cancer, took another biopsy from my left cervical lymph node, and her assistant has scheduled me for a full-body PET scan and MRI of my neck area for this week. This Friday I will receive a comprehensive evaluation and consensus opinion of some of the nation's leading head and neck cancer clinicians and specialists at the Head and Neck Center Multidisciplinary Clinic. Dr. Gourin said that my prognosis of successful treatment is good and would likelyl consist of seven weeks of combined chemical and radiation treatment.
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