A Memorial/Celebration of Cathy’s life will be held on June 30th at 2 pm at the Tappan Reformed Church, located at the intersection of Kings Hwy and Old Tappan Rd, Tappan NY 10983 (there is no street number for the church but it is a red brick building with a steeple) with a collation to follow at the Manse Barn directly across from the church just beyond the parking lot.
Many of you have already sent gifts for which we are very thankful or you have asked what the family and Cathy's wishes might be. Cathy has said she really appreciates the hospice people and that they are great. Donations can be sent in the name of Cathryn Nevin to United Hospice of Rockland, 11 Stokum Lane, New City, NY 10956 or go to www.hospiceofrockland.org.
Another option is to donate to Carrigan’s College Fund. This can be done by writing a check made out to Carrigan Nevin and mailing it to our home, 46 Western Hwy, Tappan, NY 10983. Kyle can then put the account number and the required additional information on the check and mail it to the fund. If you would rather mail directly to the fund, then please email Kyle (kyle_nevin@hotmail.com) so he can give you the necessary information to put on the check and the address to mail it to. (He does not want to post the account number on the internet).
If you have any questions please don’t hesitate to email or call Kyle at kyle_nevin@hotmail.com or 727-366-0306
Thursday, June 21, 2012
Wednesday, June 20, 2012
Rest in Peace
It is with great sadness as we write to tell you that Cathy passed away peacefully early in the morning on Tuesday, June 19th. She fought hard and long accepting each new challenge in her resolute manner without ever a complaint.
Cathy will be cremated according to her wish. There will be no funeral service but a memorial service will be held on Saturday, June 30th. In lieu of flowers, the family suggests either a contribution in memory of Cathryn Nevin to United Hospice of Rockland, www.hospiceofrockland.org or to a college fund for Carrigan. If you choose to contribute to Carrigan's college fund, we suggest that you write the check to Kyle Nevin identifying it for the college fund.
We all felt the love of family and friends during this difficult year and know you will all cherish your memories of her as we will certainly do.
Cathy will be cremated according to her wish. There will be no funeral service but a memorial service will be held on Saturday, June 30th. In lieu of flowers, the family suggests either a contribution in memory of Cathryn Nevin to United Hospice of Rockland, www.hospiceofrockland.org or to a college fund for Carrigan. If you choose to contribute to Carrigan's college fund, we suggest that you write the check to Kyle Nevin identifying it for the college fund.
We all felt the love of family and friends during this difficult year and know you will all cherish your memories of her as we will certainly do.
Monday, June 18, 2012
The Journey begins
We would like to thank everyone for all your good wishes, kind offers of help, and supportIve messages. Cathy is very much at peace with her decision to discontinue treatment and is now under the care of hospice. They have been incredibly helpful and are making Cathy as comfortable as possible as she begins this journey.
Many of you have already sent gifts for which we are very thankful or you have asked what the family and Cathy's wishes might be. Cathy has said she really appreciates the hospice people and that they are great. Donations can be sent in the name of Cathryn Nevin to United Hospice of Rockland, 11 Stokum Lane, New City, NY 10956 or go to www.hospiceofrockland.org. Another option is a donation to Carrigan's education fund.
We ask for your continued prayers and good thoughts for a peaceful passing for Cathy.
Many of you have already sent gifts for which we are very thankful or you have asked what the family and Cathy's wishes might be. Cathy has said she really appreciates the hospice people and that they are great. Donations can be sent in the name of Cathryn Nevin to United Hospice of Rockland, 11 Stokum Lane, New City, NY 10956 or go to www.hospiceofrockland.org. Another option is a donation to Carrigan's education fund.
We ask for your continued prayers and good thoughts for a peaceful passing for Cathy.
Thursday, June 14, 2012
Peace
We at Team Cathy would like to thank everybody for all of the thoughts, prayers, cards, well wishes and help you have offered Cathy as she has battled cancer for over a year now. You have helped make a difficult journey more tolerable. It is with great sadness that we tell you that Cathy has now entered Hospice Care. After much thought, consultations with doctors and discussions, Cathy and our team have decided that we are no longer going to pursue any treatment options and are instead focusing on keeping Cathy comfortable. The disease has rendered Cathy to a quality of life that is not fair to her or anyone. It is the opinion of her doctor and us that any more treatments will only delay the inevitable, cause an enormous amount of pain for Cathy, and actually make her final days much worse. Instead we have decided to let her choose how she wants to spend her final days, which is in her own bed with her family close to her.
Cathy battled courageously, in her quiet, dignified way, cracking jokes and smiling often despite her situation. Her oncologist and nurses were brought to tears, which is not easy when you work in oncology and become used to losing patients, but Cathy is that type of person - charming every one whose life she touches.
Cathy battled courageously, in her quiet, dignified way, cracking jokes and smiling often despite her situation. Her oncologist and nurses were brought to tears, which is not easy when you work in oncology and become used to losing patients, but Cathy is that type of person - charming every one whose life she touches.
Saturday, June 2, 2012
Home
There was great joy seeing Cathy come in the door - especially from Carrigan. She was discharged on Friday after receiving two courses of radiation therapy. She will now continue at Phelps Memorial as an outpatient for the remainder sessions. Thank you all for your good wishes, thoughts and prayers.
Wednesday, May 30, 2012
Radiation to start
Cathy will be starting radiation therapy ASAP! Originally the plan was to do radiation as an outpatient at Phelps Memorial where she goes for chemo. However, her pain management has been a major issue while she has been an inpatient at MSK. Fortunately, she is in the hands of the doctors and nurses at MSK where she is receiving excellent care. So, care in the hospital, pain management and radiation is the current plan of action. The doctors are optimistic that the radiation can be very effective for Cathy.
Carrigan is handling all of this like her mother - like a champ. She tucks her Abby Cadabby doll into mommy’s bed every night to keep it warm for her and writes her notes daily.
Please continue to keep Cathy in your thoughts and prayers through this most challenging time.
Carrigan is handling all of this like her mother - like a champ. She tucks her Abby Cadabby doll into mommy’s bed every night to keep it warm for her and writes her notes daily.
Please continue to keep Cathy in your thoughts and prayers through this most challenging time.
Tuesday, May 22, 2012
Stumbling blocks
It’s been a real roller coaster ride recently as Cathy has run into some stumbling blocks. She has had issues with bladder/kidney, low blood count, and pain. Cathy has tackled each challenge in her quiet, resolute way. Her list of specialists now include a urologist, nephrologist, hematologist, and radiologist. The plan by the radiologist is to target the area near her bladder to relieve tumor burden which may be giving her the pain. The plan is for treatment five times a week for three weeks. The catch-22 is that while she receives radiation, she cannot be on Oxaliplatin.
One of the ‘numbers’ monitored while receiving chemo is hemoglobin count. Up until this past week-end, Cathy’s numbers were in an acceptable range. However, this Sunday she had to have a blood transfusion in the hospital. The transfusion went well and she’s feeling tired but better. While in the hospital her pain is being addressed with a pain pump that she controls and she is finally getting some much needed sleep. Next step is we are hopeful the radiation treatment can be started shortly.
Thanks for all your support as you continue to keep us all in your prayers and good thoughts.
One of the ‘numbers’ monitored while receiving chemo is hemoglobin count. Up until this past week-end, Cathy’s numbers were in an acceptable range. However, this Sunday she had to have a blood transfusion in the hospital. The transfusion went well and she’s feeling tired but better. While in the hospital her pain is being addressed with a pain pump that she controls and she is finally getting some much needed sleep. Next step is we are hopeful the radiation treatment can be started shortly.
Thanks for all your support as you continue to keep us all in your prayers and good thoughts.
Wednesday, May 2, 2012
Change in chemo
Although Cathy’s last scan showed stabillity, her oncologist was looking for some improvement. Since the Irinotecan (latest chemo drug) was causing more side effects (such as nausea, hair loss), the decision was made to revert back to Oxaliplatin (earlier chemo drug) which gave improvement with less severe side effects while Cathy was on it. We’re hopeful the oxali works as before.
Friday, March 23, 2012
Great news
Cathy’s latest CT scan indicated the cancer is once again stabilized. Cathy & Kyle will know more after meeting with the doctor next week but we expect to continue with the current course of chemo. In the meantime, we are all walking with a lilt in our steps. Thanks to all for your support, prayers and good thoughts.
Sunday, March 18, 2012
Happy St Patrick's Day
Cathy, Kyle & Carrigan were invited for a homemade corned beef and cabbage dinner last Sunday which kicked off their celebration of St Patrick’s Day this year. Carrigan wore the new t-shirt Nana gave her that said, “Kiss me I’m Chirish, half Chinese half Irish”. It was the perfect thing to wear to her Chirish cousins’ house where they enjoyed the company of extended family, food (especially homemade key lime pies) and the spring-like weather. In addition, Cathy made her delicious Irish soda bread which is always a special treat. Team Cathy wishes a Happy St Patrick’s Day to our extended family and friends who celebrate this occasion.
Although it can be a problem when scheduling errors occur, Cathy & Kyle were able to take advantage of one recently. As they were heading into the city this past Monday, Cathy got a call that there was a mix-up regarding her CT scan and it would have to be postponed. Since they had planned to meet Ken (her brother) for lunch, they continued on in. The weather was typical of a day in May and not March so besides a great lunch, they were able to enjoy being in the city. They hit their favorite eatery, Gyro II, near Madison Square Garden and then took a stroll through Central Park. They got lost in the Ramble (which is what the designers intended), saw Strawberry Fields, Alice in Wonderland, crossed the Bow Bridge and watched children learn to play hockey and figure skate at Wollman Rink.
On Tuesday, Cathy had her regularly scheduled chemo session and she is scheduled for a CT scan next Wednesday. This will be the first scan after starting the new drug, Irinotecan. Naturally, we’re very hopeful for a good report. We are grateful that she is not having problems with any prior issues that we had mentioned previously.
Although it can be a problem when scheduling errors occur, Cathy & Kyle were able to take advantage of one recently. As they were heading into the city this past Monday, Cathy got a call that there was a mix-up regarding her CT scan and it would have to be postponed. Since they had planned to meet Ken (her brother) for lunch, they continued on in. The weather was typical of a day in May and not March so besides a great lunch, they were able to enjoy being in the city. They hit their favorite eatery, Gyro II, near Madison Square Garden and then took a stroll through Central Park. They got lost in the Ramble (which is what the designers intended), saw Strawberry Fields, Alice in Wonderland, crossed the Bow Bridge and watched children learn to play hockey and figure skate at Wollman Rink.
On Tuesday, Cathy had her regularly scheduled chemo session and she is scheduled for a CT scan next Wednesday. This will be the first scan after starting the new drug, Irinotecan. Naturally, we’re very hopeful for a good report. We are grateful that she is not having problems with any prior issues that we had mentioned previously.
Tuesday, February 21, 2012
Sigh of Relief
As we wrote recently, Cathy’s latest scan and tumor growth had created some issues and her oncologist referred her to a urologist to check out. So, in addition to going for her chemo treatment this past week, Cathy and Kyle made two trips into the city for the urologist and also for more tests/scans. The concern was whether there was a blockage from the kidney.
Happily, we all breathed a sigh of relief when Cathy got the call from the urologist to say the tube was not blocked. We are ever hopeful that the chemo will stop the tumor from any further growth.
As you may know, Cathy is a big sports fan and a wonderful distraction for the past few weeks has been the play of the NY Rangers (hockey) and the NY Knicks (basketball). Although basketball is not her favorite sport, she and Blue House are in ‘Linsanity’ land. Now that they’re living in NY, Cathy has been able to watch all the Ranger games - made even more enjoyable since they’re winning a lot this year. Of course, Carrigan is becoming a sports fan and can easily recognize the different sports and equipment already.
Happily, we all breathed a sigh of relief when Cathy got the call from the urologist to say the tube was not blocked. We are ever hopeful that the chemo will stop the tumor from any further growth.
As you may know, Cathy is a big sports fan and a wonderful distraction for the past few weeks has been the play of the NY Rangers (hockey) and the NY Knicks (basketball). Although basketball is not her favorite sport, she and Blue House are in ‘Linsanity’ land. Now that they’re living in NY, Cathy has been able to watch all the Ranger games - made even more enjoyable since they’re winning a lot this year. Of course, Carrigan is becoming a sports fan and can easily recognize the different sports and equipment already.
Monday, February 6, 2012
Gung Hay Fat Choy
Team Cathy wishes a Happy Chinese New Year to our extended family and friends who celebrate this occasion. The Year of the Dragon arrived on Monday, January 23, 2012 and according to one web site, “the dragon is considered a benevolent creature that brings good luck.” Along with everyone’s prayers and good thoughts, it never hurts to have good luck.
Cathy’s uncle and aunt hosted their annual ‘dim sum’ luncheon for the family which was thoroughly enjoyed by all. It’s a new year’s tradition for married adults to give red envelopes with money to children as a good luck symbol. Carrigan learned to recite ‘Gung Hay Fat Choy’ which she did so well many times upon receiving the red envelopes.
Last Wednesday, Cathy received her second chemo treatment which included the new drug, Irinotecan (eye-ree-noh-tee-kan). As you know, the last scan indicated increased tumor growth. Although you never want to hear that the cancer has become more active, knowing this has allowed her doctor to treat her symptoms more effectively. Happily since the last scan Cathy’s symptoms have largely been alleviated. This has been a bit of a silver lining for us.
Nautrally, we will still be watching her symptoms closely until the next scan. Another possible silver lining is that if the Irinotecan holds the cancer at bay and even makes progress she will be able to remain on it indefinitely, unlike the Oxaliplatin that did such a good job stopping the cancer initially but had a dosage limit.
Cathy’s uncle and aunt hosted their annual ‘dim sum’ luncheon for the family which was thoroughly enjoyed by all. It’s a new year’s tradition for married adults to give red envelopes with money to children as a good luck symbol. Carrigan learned to recite ‘Gung Hay Fat Choy’ which she did so well many times upon receiving the red envelopes.
Last Wednesday, Cathy received her second chemo treatment which included the new drug, Irinotecan (eye-ree-noh-tee-kan). As you know, the last scan indicated increased tumor growth. Although you never want to hear that the cancer has become more active, knowing this has allowed her doctor to treat her symptoms more effectively. Happily since the last scan Cathy’s symptoms have largely been alleviated. This has been a bit of a silver lining for us.
Nautrally, we will still be watching her symptoms closely until the next scan. Another possible silver lining is that if the Irinotecan holds the cancer at bay and even makes progress she will be able to remain on it indefinitely, unlike the Oxaliplatin that did such a good job stopping the cancer initially but had a dosage limit.
Saturday, January 21, 2012
Setback
Cathy’s latest scan indicated tumor growth and the thickening of her bladder wall. Her doctor believes she does not have bladder cancer but the tumors are causing problems. This is obviously scary and frustrating, but not entirely surprising.
Cathy was on a combination of three chemotherapy medicines, Leucovorin, Fluorouracil (5FU) and Oxaliplatin. This regimen is known as “Fol Fox”. Two scans indicated the regimen stabilized Cathy’s cancer and even provided mild improvement. However, she could only take the Oxaliplatin for a limited time or there could be irreversible side effects. She had 12 rounds of it and the plan was then to continue only with the Leucovorin and Fluorouracil hoping they would maintain the stabilization and perhaps even sustain the progress. Unfortunately, they did not do this. Cathy began to experience symptoms such as ankle swelling and abdominal discomfort. She was given a scan which showed the above results.
So now another drug, Irinotecan (Camptosar or CPT-11), has been added to her regimen and with the other two drugs makes up a treatment plan called “Fol Firi”. This new drug, like the Oxali, is a heavy hitter causing fatigue, nausea and hair thinning, but hopefully it will stop the cancer and reverse its course. Giving her Oxali again is not out of the question since it was effective the first time but for now it is better to try other medications given the irreversible side effects Oxali can cause.
This setback is a reminder to us that battling cancer is a journey with many ups and downs. Cathy had several chemo sessions with less fatigue and side effects. Now she is on a new drug and is back to being knocked out for a few days during treatment. In addition, we will have to wait and see if any other side effects occur. On the bright side, knowing what is causing her symptoms gives us courage to fight them as opposed to not knowing and guessing. The doctors can also treat and relieve her symptoms more effectively. There are many options in cancer treatment and Team Cathy will exhaust them all. That is for sure!
Cathy was on a combination of three chemotherapy medicines, Leucovorin, Fluorouracil (5FU) and Oxaliplatin. This regimen is known as “Fol Fox”. Two scans indicated the regimen stabilized Cathy’s cancer and even provided mild improvement. However, she could only take the Oxaliplatin for a limited time or there could be irreversible side effects. She had 12 rounds of it and the plan was then to continue only with the Leucovorin and Fluorouracil hoping they would maintain the stabilization and perhaps even sustain the progress. Unfortunately, they did not do this. Cathy began to experience symptoms such as ankle swelling and abdominal discomfort. She was given a scan which showed the above results.
So now another drug, Irinotecan (Camptosar or CPT-11), has been added to her regimen and with the other two drugs makes up a treatment plan called “Fol Firi”. This new drug, like the Oxali, is a heavy hitter causing fatigue, nausea and hair thinning, but hopefully it will stop the cancer and reverse its course. Giving her Oxali again is not out of the question since it was effective the first time but for now it is better to try other medications given the irreversible side effects Oxali can cause.
This setback is a reminder to us that battling cancer is a journey with many ups and downs. Cathy had several chemo sessions with less fatigue and side effects. Now she is on a new drug and is back to being knocked out for a few days during treatment. In addition, we will have to wait and see if any other side effects occur. On the bright side, knowing what is causing her symptoms gives us courage to fight them as opposed to not knowing and guessing. The doctors can also treat and relieve her symptoms more effectively. There are many options in cancer treatment and Team Cathy will exhaust them all. That is for sure!
Monday, January 2, 2012
Happy New Year
Team Cathy would like to wish everyone a Happy New Year. We thank you for continuing to keep us in your thoughts and prayers.
As the holidays approached Cathy was able to enjoy one of her favorite activities – baking. She and Carrigan made cookies for Carrigan’s teachers. She also baked many other items that were enjoyed by family and friends.
As we reflect back on 2011 it is hard to believe how much has changed. It has been a year since Cathy first discovered the lump in her neck that was to change her life so drastically. It is a tough anniversary but she and Kyle are thankful for many things - a successful surgery and stabilization of the cancer with mild improvement; Cathy’s parents have opened their house for them to live in; receiving treatment at one of the best cancer centers in the country after moving from Florida. In addition, they have been overwhelmed with all the good wishes, advice, support, prayers, and such from so many people from so many places.
As Team Cathy looks forward to 2012 we continue to be optimistic. Cathy will continue her treatment plan and would love to be cleared to work part-time by next fall. Kyle is anxiously awaiting the hiring season for teachers later this spring, hoping to get a full time job. But mostly, Cathy and Kyle are looking forward to continuing to spend time with friends and family and trying to keep up with Carrigan!
As the holidays approached Cathy was able to enjoy one of her favorite activities – baking. She and Carrigan made cookies for Carrigan’s teachers. She also baked many other items that were enjoyed by family and friends.
As we reflect back on 2011 it is hard to believe how much has changed. It has been a year since Cathy first discovered the lump in her neck that was to change her life so drastically. It is a tough anniversary but she and Kyle are thankful for many things - a successful surgery and stabilization of the cancer with mild improvement; Cathy’s parents have opened their house for them to live in; receiving treatment at one of the best cancer centers in the country after moving from Florida. In addition, they have been overwhelmed with all the good wishes, advice, support, prayers, and such from so many people from so many places.
As Team Cathy looks forward to 2012 we continue to be optimistic. Cathy will continue her treatment plan and would love to be cleared to work part-time by next fall. Kyle is anxiously awaiting the hiring season for teachers later this spring, hoping to get a full time job. But mostly, Cathy and Kyle are looking forward to continuing to spend time with friends and family and trying to keep up with Carrigan!
Monday, November 14, 2011
Thanksgiving in NY
As expected and written about in a prior blog entry, the doctors decided that they will discontinue using Oxaliplatin due to possible permanent side effects. Cathy’s latest chemo treatment (#12) was the last one including Oxaliplatin. The plan is to use the other two drugs for a few cycles before doing another scan.
Cathy continues to handle her treatments and after effects very well. The Nevin Family was able to visit Kyle’s family in Virginia and enjoy time with them. Carrigan had a lot of fun playing with her cousins and seeing Nana in person instead of on Skype. New York is a lot closer to Virginia than Florida, so it will be easier to visit Kyle’s family. However, the move to New York includes dealing with northeast weather like the unusual October snowfall. ‘Blue house’ lost power for several days but fortunately they were able to hunker down with Cathy’s brother, Glenn, who had power. They all made the best of it, particularly Carra and cousin Bryce who loved having each other for a playmate (at least most of the time). Frank & Marcia’s perfectly timed vacation for a little R & R meant they missed all the excitement while relaxing in the sun.
Cathy and Kyle will be spending their first Thanksgiving in New York since moving down to Florida. They’re looking forward to taking Carra to the Thanksgiving Day parade to see all the big balloons.
Team Cathy is thankful for many things and especially for the support and prayers of everyone following Cathy’s progress. Warmest wishes to all for a Happy Thanksgiving.
Cathy continues to handle her treatments and after effects very well. The Nevin Family was able to visit Kyle’s family in Virginia and enjoy time with them. Carrigan had a lot of fun playing with her cousins and seeing Nana in person instead of on Skype. New York is a lot closer to Virginia than Florida, so it will be easier to visit Kyle’s family. However, the move to New York includes dealing with northeast weather like the unusual October snowfall. ‘Blue house’ lost power for several days but fortunately they were able to hunker down with Cathy’s brother, Glenn, who had power. They all made the best of it, particularly Carra and cousin Bryce who loved having each other for a playmate (at least most of the time). Frank & Marcia’s perfectly timed vacation for a little R & R meant they missed all the excitement while relaxing in the sun.
Cathy and Kyle will be spending their first Thanksgiving in New York since moving down to Florida. They’re looking forward to taking Carra to the Thanksgiving Day parade to see all the big balloons.
Team Cathy is thankful for many things and especially for the support and prayers of everyone following Cathy’s progress. Warmest wishes to all for a Happy Thanksgiving.
Friday, October 28, 2011
Scan Results: mild improvement & stability
Since we know everyone is waiting to hear about Cathy's scan, the quick report is that there was mild improvement and stability in the two areas of tumors. Cathy expects to get more details when she goes in for her next session and doctor's visit. Should know then if we'll continue the same course of treatment.
Wednesday, October 19, 2011
Full Fox
Cathy received cycle #11 of her chemo treatment yesterday.
For all you medical folk, people who have experience with chemo, or the just plain curious... Cathy is receiving three drugs that make up what is called the "Full Fox" chemotherapy treatment. This is the standard treatment for a GI tract cancer, which is where they believe the cancer began. Technically, Cathy has "adeno carcinoma of unknown primary source" but they suspect a tiny polyp in her colon as the culprit, so informally they'll say it's probably colon cancer but that is just their best guess as her cancer did not present itself as colon cancer generally would. The three drugs she is on are Leucovorin, Fluorourcil (also known as 5FU which has to be everyone's favorite name for a chemo drug) and the heavy weight Oxaliplatin.
We don't think Cathy is experiencing any major side effects from the Leucovorin. The 5FU has turned Cathy's hands a nice shade of brown, just in time for Autumn. They look as though she just raided the chocolate drawer and the evidence is all over her hands. Her skin color will return to normal when she is off of the 5FU. The Oxaliplatin is, as I said earlier, a heavy weight, the drug that is expected to stop the cancer growth immediately, a first responder to get things under control if you will. In Cathy, it has caused a strange sensation in her hands and fingers. It is a sort of a numbness, not painful, just weird.
Generally people, if they can handle Oxaliplatin at all, can only handle 6-8 cycles of it. Cathy just received her 11th cycle of it and as a reward she gets a little extra supervision by the nurses. During cycle #10, two weeks ago, the nurse hooked up the oxaliplatin and asked Cathy to not recline too far in her comfy chair because they wanted to be able to observe her from the nurses' station. This was the first time she had been given this directive. The nurse also said to not keep any secrets, if Cathy felt at all "weird" or had any unusual symptoms to let her know.
Kyle writes: if I were Cathy, I would've freaked out and assumed every unusual feeling or twinge of a muscle was some sort of bad reaction to the medicine which would then require a team of nurses and doctors and some sort of beeping machine to get my body under control. How did Cathy react? She slept. Very peacefully. The nurse would come over, ask in a whisper if Cathy was doing alright, I would nod yes, the nurse would smile and walk away. Yesterday went smoothly as well as Cathy received her 11th cycle and could recline as far as she wanted.
Cathy's doctor says she has seen some patients receive as much as 12 - 15 cycles of Oxaliplatin but that is pretty rare. After cycle #12 they will most likely take Cathy off of the Oxaliplatin because it may begin to do more harm than good. Some of that decision will be based on Cathy's next scan which is scheduled for next Monday, the 24th. That will mean Cathy will have received 6 cycles of the "Full Fox" chemo treatment since her last scan, which at the time indicated stabilization and even some progress and was completed after her fourth cycle. We are very much looking forward to this new scan.
For all you medical folk, people who have experience with chemo, or the just plain curious... Cathy is receiving three drugs that make up what is called the "Full Fox" chemotherapy treatment. This is the standard treatment for a GI tract cancer, which is where they believe the cancer began. Technically, Cathy has "adeno carcinoma of unknown primary source" but they suspect a tiny polyp in her colon as the culprit, so informally they'll say it's probably colon cancer but that is just their best guess as her cancer did not present itself as colon cancer generally would. The three drugs she is on are Leucovorin, Fluorourcil (also known as 5FU which has to be everyone's favorite name for a chemo drug) and the heavy weight Oxaliplatin.
We don't think Cathy is experiencing any major side effects from the Leucovorin. The 5FU has turned Cathy's hands a nice shade of brown, just in time for Autumn. They look as though she just raided the chocolate drawer and the evidence is all over her hands. Her skin color will return to normal when she is off of the 5FU. The Oxaliplatin is, as I said earlier, a heavy weight, the drug that is expected to stop the cancer growth immediately, a first responder to get things under control if you will. In Cathy, it has caused a strange sensation in her hands and fingers. It is a sort of a numbness, not painful, just weird.
Generally people, if they can handle Oxaliplatin at all, can only handle 6-8 cycles of it. Cathy just received her 11th cycle of it and as a reward she gets a little extra supervision by the nurses. During cycle #10, two weeks ago, the nurse hooked up the oxaliplatin and asked Cathy to not recline too far in her comfy chair because they wanted to be able to observe her from the nurses' station. This was the first time she had been given this directive. The nurse also said to not keep any secrets, if Cathy felt at all "weird" or had any unusual symptoms to let her know.
Kyle writes: if I were Cathy, I would've freaked out and assumed every unusual feeling or twinge of a muscle was some sort of bad reaction to the medicine which would then require a team of nurses and doctors and some sort of beeping machine to get my body under control. How did Cathy react? She slept. Very peacefully. The nurse would come over, ask in a whisper if Cathy was doing alright, I would nod yes, the nurse would smile and walk away. Yesterday went smoothly as well as Cathy received her 11th cycle and could recline as far as she wanted.
Cathy's doctor says she has seen some patients receive as much as 12 - 15 cycles of Oxaliplatin but that is pretty rare. After cycle #12 they will most likely take Cathy off of the Oxaliplatin because it may begin to do more harm than good. Some of that decision will be based on Cathy's next scan which is scheduled for next Monday, the 24th. That will mean Cathy will have received 6 cycles of the "Full Fox" chemo treatment since her last scan, which at the time indicated stabilization and even some progress and was completed after her fourth cycle. We are very much looking forward to this new scan.
Thursday, September 22, 2011
The New Limbo and Silver Linings
Kyle here:
At Cathy's cycle 9 visit this week it was decided to put the next scan off for a couple of cycles (each cycle is two weeks) rather than do it after her 10th as originally planned. They will probably wait until her 12th since Cathy's blood work and her handling of the chemo are both very good. The less scans the better since x-rays are not something you want to receive too often.
Cathy has also been meeting with a social worker and another mom who has cancer and also has young children. This support group was the idea of the social worker (who is awesome) who made the point that so often with cancer, support groups tend to focus on elderly patients or children. There are not a lot of resources regarding receiving cancer treatment while raising young children (especially a beautiful, active girl who has deservedly earned the nicknames, Carracane, Carranado, and Carrabiner - for her climbing). Cathy has enjoyed her discussions with someone who really understands her situation.
As hard as it is, Cathy and I are trying to be patient as we continue treatment but remain in a bit of limbo by not knowing where our cancer journey will bring us in the months and years ahead. As many times and ways that I try to cajole some kind of prognosis from Cathy's doctors I have found a recurring and very simple answer, "We don't know". Basically anything can happen and Cathy's current oncologist has said she has seen all types of situations and many different results. More often than not I hear, "Patients react differently and every case is too different to say for sure." As hard as this may be to hear because as humans we like to think we are in control - taking in info and making decisions - the truth is, we are not. But, what we are in control of, is how we react to the events that life throws at us. Although Cathy has not received any awful prognosis like "you have 3 months to live", she also has not received a prognosis of "we'll remove the tumor and after 6 chemo cycles you should be cancer free." What that leaves is this "we don't know" limbo prognosis.
Well, to me there is a bright side there. It seems much of Cathy's recovery may have to do with non-medical approaches which Cathy and I can control like diet, exercise, meditation, and so on. So, since she may not be able to rely solely on medicine, her cancer may serve as a catalyst to make many life changes that are long overdue (especially for me). We have already begun Tai Chi with her father and though we can't 'repulse the monkey' yet, we can 'part the wild horses mane' and that is a start. And who better to learn from than a master Tai Chi instructor - who doesn't charge us!
As a side note, Cathy's current oncologist is great. She smiles and laughs and thinks Cathy is doing absolutely wonderful based on her appearance, reaction to the chemo and blood work. We really like this doctor. But no, she still can not give us a definite prognosis.
Love to all, thank you for your thoughts and prayers.
At Cathy's cycle 9 visit this week it was decided to put the next scan off for a couple of cycles (each cycle is two weeks) rather than do it after her 10th as originally planned. They will probably wait until her 12th since Cathy's blood work and her handling of the chemo are both very good. The less scans the better since x-rays are not something you want to receive too often.
Cathy has also been meeting with a social worker and another mom who has cancer and also has young children. This support group was the idea of the social worker (who is awesome) who made the point that so often with cancer, support groups tend to focus on elderly patients or children. There are not a lot of resources regarding receiving cancer treatment while raising young children (especially a beautiful, active girl who has deservedly earned the nicknames, Carracane, Carranado, and Carrabiner - for her climbing). Cathy has enjoyed her discussions with someone who really understands her situation.
As hard as it is, Cathy and I are trying to be patient as we continue treatment but remain in a bit of limbo by not knowing where our cancer journey will bring us in the months and years ahead. As many times and ways that I try to cajole some kind of prognosis from Cathy's doctors I have found a recurring and very simple answer, "We don't know". Basically anything can happen and Cathy's current oncologist has said she has seen all types of situations and many different results. More often than not I hear, "Patients react differently and every case is too different to say for sure." As hard as this may be to hear because as humans we like to think we are in control - taking in info and making decisions - the truth is, we are not. But, what we are in control of, is how we react to the events that life throws at us. Although Cathy has not received any awful prognosis like "you have 3 months to live", she also has not received a prognosis of "we'll remove the tumor and after 6 chemo cycles you should be cancer free." What that leaves is this "we don't know" limbo prognosis.
Well, to me there is a bright side there. It seems much of Cathy's recovery may have to do with non-medical approaches which Cathy and I can control like diet, exercise, meditation, and so on. So, since she may not be able to rely solely on medicine, her cancer may serve as a catalyst to make many life changes that are long overdue (especially for me). We have already begun Tai Chi with her father and though we can't 'repulse the monkey' yet, we can 'part the wild horses mane' and that is a start. And who better to learn from than a master Tai Chi instructor - who doesn't charge us!
As a side note, Cathy's current oncologist is great. She smiles and laughs and thinks Cathy is doing absolutely wonderful based on her appearance, reaction to the chemo and blood work. We really like this doctor. But no, she still can not give us a definite prognosis.
Love to all, thank you for your thoughts and prayers.
Saturday, August 27, 2011
Genetic and Weather Forecasting
When the oncologist at MSK recommended at her first visit that Cathy should see the geneticist, we were speculating the reasons for this suggestion. In the area of cancer research, it appears that genetics is the latest forefront and some newer treatments have come about due to this research.
Cathy had a visit with the geneticist and recently got the results from some tests they did. They tested for two genetic mutations: Lynch Disease and MYH Associated Polyposis (MAP). The tests came back negative for both which we consider good news. There would have been more serious implications for Carrigan if they found a definite genetic mutation. Although this doesn’t answer a lot of questions regarding the origin of Cathy’s cancer, it may help researchers as they work on unraveling cancer’s mystery.
Cathy’s latest chemo session this week went well. Although the oncologist said that sometimes they see more side effects with treatment #7, fortunately Cathy didn’t fall into that group.
In the meantime, athough Cathy and Kyle moved away from Florida, it looks like they didn’t get away from hurricanes. It sounds like NY is going to get hit by Hurricane Irene while she stayed away from Florida. We are preparing for high winds and heavy rain but hoping it won’t be as bad as they’re forecasting.
Monday, August 8, 2011
New Routines and Familiar Faces
Cathy’s next chemo session (this Tuesday) will be her third one at Phelps. Besides a calmer and shorter day, another plus for Phelps is that Cathy is seeing familiar faces each session (although it's not quite "Cheers" - where everybody knows your name - yet). We all tend to thrive with a routine.
As for the routine at ‘blue house’, Carrigan has been enrolled full-time at the daycare center for awhile now. Since that was her routine in Florida, the transition has been very smooth. Her teachers have commented that, “It’s like she’s always been there.” She talks about her friends at school and surprisingly also talks about the friends she had in Florida. The full day schedule is not only good for her but also gives Kyle time to take care of other pressing matters and Cathy time to rest. Recently, Carra’s crib was converted to a youth bed. She didn’t leave much choice when she climbed out of her crib for the first time and she’s adjusted quite well to the change.
Cathy and Kyle have to remind themselves that ‘summer’ in NY has a different meaning than in FL. They have to plan activities to take advantage of the weather before we head into the cold winter weather. So far that has included trips to visit family, reunion with Cathy’s college friends, a visit to a local animal farm and playing in the backyard ‘kiddie’ pool. Hopefully, they can squeeze in a few more things before summer ends and before Kyle finds a job. The job search in the northeast is very different from FL as there are no county school districts but many districts within each county. Ideally, he would like to teach social studies in a middle school or high school. Kyle says this is the first time in 13 years that he may miss the opening day of school and it’s making him feel a little melancholy.
Coming up soon is a visit from Nana (Kyle’s mom) who will get to see them in their new digs and especially to spend time with Carra. It’s difficult to give OOO & XXX over Skype!
As for the routine at ‘blue house’, Carrigan has been enrolled full-time at the daycare center for awhile now. Since that was her routine in Florida, the transition has been very smooth. Her teachers have commented that, “It’s like she’s always been there.” She talks about her friends at school and surprisingly also talks about the friends she had in Florida. The full day schedule is not only good for her but also gives Kyle time to take care of other pressing matters and Cathy time to rest. Recently, Carra’s crib was converted to a youth bed. She didn’t leave much choice when she climbed out of her crib for the first time and she’s adjusted quite well to the change.
Cathy and Kyle have to remind themselves that ‘summer’ in NY has a different meaning than in FL. They have to plan activities to take advantage of the weather before we head into the cold winter weather. So far that has included trips to visit family, reunion with Cathy’s college friends, a visit to a local animal farm and playing in the backyard ‘kiddie’ pool. Hopefully, they can squeeze in a few more things before summer ends and before Kyle finds a job. The job search in the northeast is very different from FL as there are no county school districts but many districts within each county. Ideally, he would like to teach social studies in a middle school or high school. Kyle says this is the first time in 13 years that he may miss the opening day of school and it’s making him feel a little melancholy.
Coming up soon is a visit from Nana (Kyle’s mom) who will get to see them in their new digs and especially to spend time with Carra. It’s difficult to give OOO & XXX over Skype!
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