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.
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