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.
Wednesday, September 28, 2011
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.
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