Following my PET scan on March 5, three months following the end of my seven-week combined chemo-radiation treatment, Dr. Christine Gourin, who first diagnosed my left tonsil cancer on August 5 and biopsied my tonsil and nasopharanx on August 12, requested that I return to Hopkins in two months for a follow-up PET scan because the remains of my high cervical lymph node to which the primary cancers had metastasized "lit up," although emitting positrons at a level below what Hopkins specialists consider indicative of cancer presence. A PET scan at Hopkins on May 7 still found no indication of cancer, but the remains of the same lymph node "lit up." Dr. Gourin told me that standard practice used to be to surgically remove all of the lymph nodes on one or both sides of the neck with metastasis of head and neck cancer to them, but her experience had shown no increase in survival with such radical neck dissection. She told me that she wanted to monitor the remains of the lymph node and see me every two months. The lymph nodes on both sides of my neck had been irradiated along with my left tonsil and nasopharanx cancers during my seven weeks of radiation treatment from October 17 to December 5. Concurrent chemotherapy with carboplatin had continued to shrink the tumors and increase the lethality to tumor cells of the radiation. Last week, after seeing the results of my May 7 PET scan, my radiation oncologist Dr. Harry Quon at first recommended that my lymph nodes on the left side of my neck be removed, but after carefully feelng the lymph node that was still palpable, and that had "lit up" again during the follow-up PET scan, said that the node felt "burned out," and agreed with Dr. Gourin's recommendation to continue to monitor it. On March 6 he had recommended two thyroid tests every six months, which were included in my blood work drawn on May 7; thankfully, these turned out negative. Other blood test results were also within normal ranges, and my medical oncologist, Dr. Shanti Mathur, agreed with Dr. Gourin and Dr. Quon that the remaining palpable lymph node was probably scar tissue and continue to be monitored. So I will have to return to Hopkins every two months, and get another PET scan in four to six months.
I greatly enjoyed being able to spend a lot of time with Raquel, and am especially grateful for her picking me up at Washington National Airport, staying with me at our friends' Leroy and Flor de Liz Snyder, driving me back and forth to Johns Hopkins in Baltimore, and especially joining me at my appointments with my doctors to hear the results of my PET scan and their recommendations. I also enjoyed seeing Leroy and Flor de Liz and their children Cynthia, Kenneth, and Bibiana. My friends Mark and Bella Smith graciously put me up on the night I flew in from Costa Rica, May 5, and on May 9 and 10 following my Hopkins appointments, and it was great to spend time with them, also. Mark and I were joined by friends who also work with the USDA Foreign Agricultural Service for lunch on Thursday at the USDA Cafeteria.
On Friday, May 11, Raquel took me to National Airport to fly to Chicago to visit Tim and Bret, where I am now, as always enjoying their company and Chicago's Lakeview neighborhood, CTA transportation, and downtown shopping. We'll attend a Whitesox v. Detroit Tigers game on Tuesday, where we'll be routing for the Tigers, who have been Bret's favorite team since growing up in Michigan. I return to Costa Rica on Wednesday, where Damaris, Steve, and Pati have "held down the fort" and welcomed the positive news from my tests at Hopkins.
I continue to be a survivor, thankful for the support of family, friends, and the contributions of modern medical science, all blessings of our Creator.
Sunday, May 13, 2012
Wednesday, March 7, 2012
PET Scan @ 3 months Post-Treatment - No Cancer!
This past Monday, March 5, was exactly three months since my last radiation treatment, and I had a PET scan at Johns Hopkins to determine if there was any cancer remaining in the treated area, or elsewhere in my body. Great news--no evidence of cancer in my body!
But that's not the full story. The PET scan did show a "lit up" area, the remains of my left high cervical lymph node that was the most swollen (presumably the largest tumor) and that motivated me in late July to make an appointment with the ear, nose, and throat physician who ordered my original biopsy in Costa Rica. Being "lit up" means that it contains tissue that was absorbing the radioactive glucose injected into me for the PET scan and that positrons were being emitted and detected by the scanner. PET is short for Positron Emission Tomography, and involves injecting the patient with a solution of a glucose analog containing radioactive molecules that get released when metabolized by rapidly dividing cells, a key characteristic of cancer cells. During a PET scan, these cells release positrons detected by the PET scanner. By Hopkins' criteria, the level of positron release was well below the threshold indicating the presence of cancer, hence the finding that I have no cancer. My Hopkins doctors believe that the lymph node that "lit up" was still somewhat inflamed from my radiation treatment that ended on Dec. 5. However, they want me to return in two months for another PET scan to see whether it no longer lights up or if it lights up more. If the positron absorption level is above the threshold indicating the presence of cancer, they'll consider removing it surgically. The lymph node shrunk greatly during treatment but remained palpabl at the end of treatment. I was told that it might continue to get smaller and disappear; however, it was still palpable and apparently the same size at my 6-week follow-up appointment at Hopkins on Jan. 17, when they told me that it would not be unusual for scar tissue to remain after radiation kills the cancer cells in a greatly enlarged lymph node.
In my last blog entry on January 14, I shared my strong desire that my PET tube would be removed at my follow-up appointment on the 17th, but I was greatly disappointed that Dr. Gourin had recommended that I wait for my PET scan to make sure that no cancer remained that might require surgery affecting swallowing. If the PEG tube had been removed, and I had eventually required surgery preventing me from nourishing myself orally, a new tube would have had to be placed, a surgical procedure. So I had resigned myself to waiting for my PET scan, hoping the results would convince my doctors to allow removal of the tube. However, the tube fell out by itself early in the morning of my PET scan as I was giving it its required daily rinse. On Saturday after my airline flights north, I had possibly displaced it during extended dry coughing, apparently collapsing the inflated balloon that kept the tube in my stomach and possibly tearing some stomach wall muscles. So one way or another, the PEG tube is out, which also makes me happy. My stomach muscles are recovering and my tube incision is healing fast.
My blood tests at Hopkins showed that my hemoglobin, hematocrit, and red blood cell count have all increased considerably since January 16, and my indicators of kidney function remain excellent. My other blood constituent levels are also within normal ranges.
It's great being able to spend time with Raquel, and visiting Flor de Liz, Leroy, and Bibi Snyder, where we're staying in Huntingtown, MD. Now that my appointments at Hopkins are over, Raquel and I will enjoy spring weather in Washington DC tomorrow.
I'm attaching an image of my throat and the top of my voicebox, taken from above in my larynx by Dr.Quon with his new Olympus endoscope and copied by him from his system's image logger to my flash drive. He says that my throat has recovered to the point that there's no sign that the tissues have been irradiated. My vocal chords are "clenched" because Dr. Quon had askd me to say "eeeee." The base of my tongue is at the bottom of the image.
But that's not the full story. The PET scan did show a "lit up" area, the remains of my left high cervical lymph node that was the most swollen (presumably the largest tumor) and that motivated me in late July to make an appointment with the ear, nose, and throat physician who ordered my original biopsy in Costa Rica. Being "lit up" means that it contains tissue that was absorbing the radioactive glucose injected into me for the PET scan and that positrons were being emitted and detected by the scanner. PET is short for Positron Emission Tomography, and involves injecting the patient with a solution of a glucose analog containing radioactive molecules that get released when metabolized by rapidly dividing cells, a key characteristic of cancer cells. During a PET scan, these cells release positrons detected by the PET scanner. By Hopkins' criteria, the level of positron release was well below the threshold indicating the presence of cancer, hence the finding that I have no cancer. My Hopkins doctors believe that the lymph node that "lit up" was still somewhat inflamed from my radiation treatment that ended on Dec. 5. However, they want me to return in two months for another PET scan to see whether it no longer lights up or if it lights up more. If the positron absorption level is above the threshold indicating the presence of cancer, they'll consider removing it surgically. The lymph node shrunk greatly during treatment but remained palpabl at the end of treatment. I was told that it might continue to get smaller and disappear; however, it was still palpable and apparently the same size at my 6-week follow-up appointment at Hopkins on Jan. 17, when they told me that it would not be unusual for scar tissue to remain after radiation kills the cancer cells in a greatly enlarged lymph node.
In my last blog entry on January 14, I shared my strong desire that my PET tube would be removed at my follow-up appointment on the 17th, but I was greatly disappointed that Dr. Gourin had recommended that I wait for my PET scan to make sure that no cancer remained that might require surgery affecting swallowing. If the PEG tube had been removed, and I had eventually required surgery preventing me from nourishing myself orally, a new tube would have had to be placed, a surgical procedure. So I had resigned myself to waiting for my PET scan, hoping the results would convince my doctors to allow removal of the tube. However, the tube fell out by itself early in the morning of my PET scan as I was giving it its required daily rinse. On Saturday after my airline flights north, I had possibly displaced it during extended dry coughing, apparently collapsing the inflated balloon that kept the tube in my stomach and possibly tearing some stomach wall muscles. So one way or another, the PEG tube is out, which also makes me happy. My stomach muscles are recovering and my tube incision is healing fast.
My blood tests at Hopkins showed that my hemoglobin, hematocrit, and red blood cell count have all increased considerably since January 16, and my indicators of kidney function remain excellent. My other blood constituent levels are also within normal ranges.
It's great being able to spend time with Raquel, and visiting Flor de Liz, Leroy, and Bibi Snyder, where we're staying in Huntingtown, MD. Now that my appointments at Hopkins are over, Raquel and I will enjoy spring weather in Washington DC tomorrow.
I'm attaching an image of my throat and the top of my voicebox, taken from above in my larynx by Dr.Quon with his new Olympus endoscope and copied by him from his system's image logger to my flash drive. He says that my throat has recovered to the point that there's no sign that the tissues have been irradiated. My vocal chords are "clenched" because Dr. Quon had askd me to say "eeeee." The base of my tongue is at the bottom of the image.
Saturday, January 14, 2012
Six Weeks Post-Treatment Appointments Next Week - Jan. 17, 2012
Today I fly to Washington DC in anticipation of appointments next week at Johns Hopkins Cancer Center in Baltimore for my 6-week follow-up of my combined chemical and radiation therapy. My final radiation treatment was Dec.5. I'm very much looking forward to seeing and spending time with our daughter Raquel, who will pick me up at National Airport and take me to the house of my friend Mark Smith and his wife Bella, in Vienna VA, where I'll stay until Monday, and maybe the entire week. So far I have appointments at Hopkins only on Tuesday, Jan. 17, so I hope to visit friends who work in USDA in Washington, some in the Forest Service and some in the Foreign Agricultural Service. And I'm hoping to spend a lot of quality time with Raquel.
I'm also hoping that next week my doctors will approve removal of my PEG tube, which was welcome during the final weeks of my treatment and two weeks after when the sores in my mouth and throat prevented me from eating normally, but which is no longer necessary, because I'm now able to eat pretty normally. I still have at least one sore in the back of my mouth but that doesn't seem to affect eating. The greatest remaining radiation effect is reduced saliva production, which requires sips of water to be able to chew and swallow drier foods such as sandwiches. Munchies such as Cheetos appear to be a thing of the past, at least until my salivary glands recover from radiation bombardment, if they ever do. Most foods present no problems, other than very spicy food, to which my mouth retains heightened sensitivity. At any rate, the need to daily flush the PEG tube and place split-gauze dressings around its base after showering, and the prohibition of bathing in the ocean or thermal springs, makes the PEG tube a depressing appendage to my body. After all, it's summer in Costa Rica (verano, the dry season) and I'd hate to waste it without being able to fully enjoy the beach! Last week I called my Hopkins radiation nurse to suggest scheduling an appointment for removal of my PEG tube while I'm there. She alarmed me by saying that, if the G-tube was needed for nourishment during treatment, they generally recommend leaving it in place until three months post-treatment when a PET scan is performed to detect whether there is still active cancer that might require surgical removal. Apparently the thinking is that the surgery would affect the mouth and/or throat and therefore the patient's ability to nourish him or herself by mouth. The thought of having to continue to maintain an otherwise unused PEG tube for another six weeks makes me depressed. I suspect that contributing to the depression is vocalization by the nurse of the possibility that my arduous treatment might not have totally killed the cancer cells. This in spite of reading in National Cancer Institute literature that cancer cells continue to die up to a year following radiation. I pray that Dr. Quon, Dr. Marur, and Dr. Gourin find consensus that my PEG tube can be removed. The risk would be that if a PEG tube were subsequently needed because cancer remained and surgery to remove it would impair normal eating, that additional minor surgery would be required to put in a new one.
I return to Costa Rica from the States next Saturday, Jan. 21, so this is a short, but expensive, trip.
I'm also hoping that next week my doctors will approve removal of my PEG tube, which was welcome during the final weeks of my treatment and two weeks after when the sores in my mouth and throat prevented me from eating normally, but which is no longer necessary, because I'm now able to eat pretty normally. I still have at least one sore in the back of my mouth but that doesn't seem to affect eating. The greatest remaining radiation effect is reduced saliva production, which requires sips of water to be able to chew and swallow drier foods such as sandwiches. Munchies such as Cheetos appear to be a thing of the past, at least until my salivary glands recover from radiation bombardment, if they ever do. Most foods present no problems, other than very spicy food, to which my mouth retains heightened sensitivity. At any rate, the need to daily flush the PEG tube and place split-gauze dressings around its base after showering, and the prohibition of bathing in the ocean or thermal springs, makes the PEG tube a depressing appendage to my body. After all, it's summer in Costa Rica (verano, the dry season) and I'd hate to waste it without being able to fully enjoy the beach! Last week I called my Hopkins radiation nurse to suggest scheduling an appointment for removal of my PEG tube while I'm there. She alarmed me by saying that, if the G-tube was needed for nourishment during treatment, they generally recommend leaving it in place until three months post-treatment when a PET scan is performed to detect whether there is still active cancer that might require surgical removal. Apparently the thinking is that the surgery would affect the mouth and/or throat and therefore the patient's ability to nourish him or herself by mouth. The thought of having to continue to maintain an otherwise unused PEG tube for another six weeks makes me depressed. I suspect that contributing to the depression is vocalization by the nurse of the possibility that my arduous treatment might not have totally killed the cancer cells. This in spite of reading in National Cancer Institute literature that cancer cells continue to die up to a year following radiation. I pray that Dr. Quon, Dr. Marur, and Dr. Gourin find consensus that my PEG tube can be removed. The risk would be that if a PEG tube were subsequently needed because cancer remained and surgery to remove it would impair normal eating, that additional minor surgery would be required to put in a new one.
I return to Costa Rica from the States next Saturday, Jan. 21, so this is a short, but expensive, trip.
Friday, December 9, 2011
Treatment's Over! - December 9, 2011
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.
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.
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.
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