This past Tuesday, December 4, 2012, I had my fourth post-treatment PET scan at Johns Hopkins Hospital. The first words from Dr. Shanti Marur, my medical oncologist with whom I had my first appointment after the scan, were "Do you want to hear the good news?" She had just talked with the radiologist from Hopkins' PET Center who had reviewed the scan. She went on to say that the scan detected no sign of cancer in my treated tissues, nor in the rest of my body down to my legs. My blood chemistry results were also good, with recovery of normal levels after the effects of chemotherapy that I had received both prior to and during concurrent chemo-radiation therapy. My PET scan was a full year, 365 days, following the last day of radiation treatment on December 5, 2011. Dr. Marur told me that with these results, I wouldn't need to see her for six months.
Later in the day I saw my head and neck surgeon on my treatment team, Dr. Christine Gourin. Dr. Gourin was the first doctor that I saw at Hopkins on August 5, 2011, following the fine needle biopsy of my swollen left high cervical lymph nodule in Costa Rica, the lab results of which, "findings compatible with metastasized squamous cell carcinoma" (translation from Spanish), prompted my wife Damaris and me to fly to the Washington DC/Baltimore area on August 2 for the best further diagnosis available and treatment if necessary. Dr. Gourin gave me a copy of the preliminary radiologist report of my PET scan (not yet reviewed and signed by the attending radiologist) and examined by mouth, throat, and nose, stating that my tissues had healed well from the treatments. She, too, said that I didn't need to return as early as three months, but recommended I return for follow-up in four months. Because she was the first doctor on my treatment team who examined me in August of last year, she's considered my primary doctor for my treatment team, so I suspect that I'll follow her recommendation. Dr. Gourin took a good look at my teeth and commented on the importance of special dental care because of my reduced saliva production caused by radiation effects on my salivary glands. Saliva plays a vital role in maintaining dental health. Finding a dentist in Costa Rica who is thoroughly knowledgeable of dental care for patients who have had radiation treatment of their mouth and jaws is a top priority for me upon my return to Costa Rica on December 13.
My final appointment on Tuesday was with my radiation oncologist, Dr. Harry Quon. Dr. Quon also examined me, and marveled again, as he had on August 28, how well the tissues of my mouth, throat and nasal cavity had recoverd from radiation. He commented to his resident, Dr. Shibaja (Hopkins is a teaching hospital, and Dr. Shibaja inserted and manipulated the endoscope in my nasal cavity as Dr. Quon coached him), that the still-palpable left high cervical lymph nodule had shrunk since August, and that my treatment team had opted against radical neck dissection (surgical removal of neck lymph nodules, once standard practice for level-IV metastasized head and neck cancer) and that my case was included in a research paper by him and others on the topic currently under review.
Once again, our daughter Raquel drove me to Hopkins and accompanied me through the day. It's been great to be able to spend some time with her again. Returning less frequently for follow-ups at Hopkins has a down side--seeing Raquel less frequently. Maybe I can spend some of the money saved by traveling less frequently to Hopkins by paying for Raquel to go visit us in Costa Rica.
This Saturday, December 8, I'll fly to Chicago to visit our son Tim and daugher-in-law Bret in Skokie. Bret's due date of our future grandson Oliver was December 2, and Damaris flew there on November 15 to help Bret in the final days of her preganancy and first days of motherhood. I hope that Ollie is born between now and my flight back to Costa Rica. I miss Damaris, and Tim and Bret, so I'm looking forward to seeing them in Skokie, but as might be imagined, the prospect of getting to see and hold my first grandson is totally awesome!
Thursday, December 6, 2012
Friday, November 2, 2012
Follow-up PET Scan August 28, 2012, Still No Cancer
As I noted in my blog about my May 6 PET scan and doctors visits, Dr. Gourin decided that she wanted to see me every two months and wanted me to have another PET scan in five months. Since I was interested in consolidating travel from Costa Rica where I live to Baltimore as much as possible, because of the high cost, I ended up scheduling my subsequent PET scan and visits with doctors for the same day, August 28. My PET scan that day showed no abnormal positron acquisition, and Drs. Gourin and Quon seemed very positive about the results nine and a half months post-treatment. Dr. Marur wasn't available that day because she was out of the country. Drs. Gourin and Quon were very pleased with the recovery of the tissue that had been irradiated in my mouth, throat, and nasopharanx; Dr. Quon stated that it wasn't evident that I had even undergone radiation therapy. My lymph nodule high on the left side of my neck near the angle of my jaw (high-cervical lymph nodule) has remained palpable but seemingly unchanged post-treatment, and both doctors are quite confident that it is a "burned-out" nodule, as Dr. Quon referred to it on May 6. Both doctors recommended that I return to Johns Hopkins for another PET scan and for them to examine me in December, which would be one year post-treatment. That visit is now scheduled for December 4. I also saw speech and swallowing therapist Donna Tippett, who strongly recommended that I continue the swallowing exercises that she had given me during my treatment and that I have been continuing, although not as frequently as she recommends. I shared with her that I don't really experience problems swallowing, with the exception of needing to drink some liquid to help swallow dry, crumbly foods, such as bread.
I continue to experience dry mouth, but it appears that my saliva glands are slowly recovering, because keeping a water bottle handy 100% of the time isn't as essential as formerly. Nevertheless, I try not to leave home without it. I still awake too frequently during the night with a very dry mouth, no doubt because my mouth opens as I sleep and my throat dries out as I breathe. Also, if I engage in fairly active exercise, which I do three times/week playing badminton outside with friends, my throat dries out quickly if I'm breathing through my mouth. I purchased some packs of Biotene Dry Mouth gum while in the States for my last follow-up visit, and that helps greatly while exercising vigorously. I've learned that the effect of the gum last longer if I resist the temptation to take sips of water, apparently because the water washes the enzymes that are in the gum down my throat. The gum contains enzymes that supposedly help the damaged salivary glands produce saliva.
I enjoyed being able to spend time with our daughter Raquel and see the new apartment that she shares with her fiance Alex in Alexandria, VA. She drove me to Baltimore for my scan and doctors visits at Hopikins, and accompanied me for my visit with Dr. Quon. I greatly welcomed her company, because for some reason I was nervous about what the PET scan would find. Raquel and I went on a short sail one evening on the Chesapeake Bay skipjack Minnie V. on the Potomac River out of Alexandria, owned by the Potomac Riverboat Company. I then flew to Chicago to see our son Tim and daughter-in-law Bret and their new apartment in Skokie IL. We had a fun afternoon at the last day of the Chicago Jazz Festival in Grant Park. They're expecting our first grandson, Oliver, whom I hope to meet on the way back to Costa Rica from my Dec. 4 visit to Hopkins. I'm hoping that Raquel will be able to accompany me to Chicago to meet her first nephew.
I continue to experience dry mouth, but it appears that my saliva glands are slowly recovering, because keeping a water bottle handy 100% of the time isn't as essential as formerly. Nevertheless, I try not to leave home without it. I still awake too frequently during the night with a very dry mouth, no doubt because my mouth opens as I sleep and my throat dries out as I breathe. Also, if I engage in fairly active exercise, which I do three times/week playing badminton outside with friends, my throat dries out quickly if I'm breathing through my mouth. I purchased some packs of Biotene Dry Mouth gum while in the States for my last follow-up visit, and that helps greatly while exercising vigorously. I've learned that the effect of the gum last longer if I resist the temptation to take sips of water, apparently because the water washes the enzymes that are in the gum down my throat. The gum contains enzymes that supposedly help the damaged salivary glands produce saliva.
I enjoyed being able to spend time with our daughter Raquel and see the new apartment that she shares with her fiance Alex in Alexandria, VA. She drove me to Baltimore for my scan and doctors visits at Hopikins, and accompanied me for my visit with Dr. Quon. I greatly welcomed her company, because for some reason I was nervous about what the PET scan would find. Raquel and I went on a short sail one evening on the Chesapeake Bay skipjack Minnie V. on the Potomac River out of Alexandria, owned by the Potomac Riverboat Company. I then flew to Chicago to see our son Tim and daughter-in-law Bret and their new apartment in Skokie IL. We had a fun afternoon at the last day of the Chicago Jazz Festival in Grant Park. They're expecting our first grandson, Oliver, whom I hope to meet on the way back to Costa Rica from my Dec. 4 visit to Hopkins. I'm hoping that Raquel will be able to accompany me to Chicago to meet her first nephew.
Sunday, May 13, 2012
Follow-up PET Scan May 6 - Still No Cancer
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.
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.
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.
Subscribe to:
Posts (Atom)