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.
Monday, November 14, 2011
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!
Friday, July 29, 2011
Good News from the Nutritionist
Cathy had an appointment with a nutritionist at Phelps this week. Despite fears of food logs and eggbeaters, Cathy was pleased to hear that her diet does not require significant changes. The goal is to keep Cathy's weight normal and boost her immune system. This requires protein. And protein, of course, is found in many of the favorite foods that Cathy had feared would be banished to the "do not touch" part of the refrigerator. So, with the blessings of Cathy's nutritionist... bring on the eggs, cheese, peanut butter and definitely the meat!
Thursday, July 21, 2011
Quick Update: Good CT Scan Results
Cathy got good results from her CT scan! Doctor said things looked improved from the baseline so we'll continue on with the same treatment plan for now.
Sunday, July 17, 2011
Better Snacks
The trip to Phelps MSK in Sleepy Hollow, NY, was a great (under the circumstances) experience: it is much closer than the MSK Outpatient Pavilion in Manhattan; parking is free; it is a pretty ride over the Hudson River (through Tarrytown and the quaint village of Sleepy Hollow); and they have better snacks.
We have always had confidence that Cathy was receiving the best treatment with Sloan Kettering but trips to the Pavilion became very trying. Cathy might have a 2:30 appointment but not see the doctor until 5:30. The workers were rushed. It was noisy. And the days often became 12 hour events, which obviously, is not the most conducive means to heal Cathy.
At Phelps MSK, the whole procedure was much calmer, warmer and pleasant. We really think this is an important step in our cancer journey and are very fortunate Phelps MSK exists.
Up next is Cathy's first CT scan since her chemo treatment began. She will have the scan on Tuesday and we should know results by Thursday or Friday. So far, we have been going on circumstantial evidence (e.g., how she is handling the medicine, keeping her weight up, any fevers and so on) to assess how her healing is progressing. We will be looking forward to the scan to get some hard evidence of what effect the chemo is having on the growths in Cathy's body. We will of course update you as soon as we know.
We have always had confidence that Cathy was receiving the best treatment with Sloan Kettering but trips to the Pavilion became very trying. Cathy might have a 2:30 appointment but not see the doctor until 5:30. The workers were rushed. It was noisy. And the days often became 12 hour events, which obviously, is not the most conducive means to heal Cathy.
At Phelps MSK, the whole procedure was much calmer, warmer and pleasant. We really think this is an important step in our cancer journey and are very fortunate Phelps MSK exists.
Up next is Cathy's first CT scan since her chemo treatment began. She will have the scan on Tuesday and we should know results by Thursday or Friday. So far, we have been going on circumstantial evidence (e.g., how she is handling the medicine, keeping her weight up, any fevers and so on) to assess how her healing is progressing. We will be looking forward to the scan to get some hard evidence of what effect the chemo is having on the growths in Cathy's body. We will of course update you as soon as we know.
Monday, July 11, 2011
Change in the Routine
Cathy’s last chemo treatment was rescheduled from last Thursday... but for a very good reason: she is going to start receiving treatment tomorrow (Tuesday) at MSK’s affiliate in Sleepy Hollow, NY located on the campus of Phelps Memorial Hospital.
The initial appointment at Phelps with the oncologist and the drive over the river to Westchester gives us confidence that this change will be good. We had mentioned before that Team Cathy was hoping for changes that could make the chemo days less tiring - and this is the one we wanted. Since the facility is less crowded, time spent waiting for treatment will be reduced. Also, it’s a shorter drive to Phelps with free parking - a major bonus. We’ll let you all know how this goes.
The initial appointment at Phelps with the oncologist and the drive over the river to Westchester gives us confidence that this change will be good. We had mentioned before that Team Cathy was hoping for changes that could make the chemo days less tiring - and this is the one we wanted. Since the facility is less crowded, time spent waiting for treatment will be reduced. Also, it’s a shorter drive to Phelps with free parking - a major bonus. We’ll let you all know how this goes.
Tuesday, June 28, 2011
Little things (and lots of them) mean a lot
With thanks to so many good friends in Florida who helped pack boxes and load the truck, Kyle was able to make it back up to NY the night before Cathy’s chemo session. On his way North, Kyle was able to stay at his mother’s in VA and to also visit with his sister and family. Since Michael and Gary volunteered to provide a storage area, Kyle drove to PA before continuing to NY. It was a very long day for Kyle but he achieved his goal.
Considering the anxieties that naturally go along with waiting for someone to arrive safely from a long journey, we’re glad to report that Cathy’s latest chemo went well and followed the pattern of previous rounds with one key difference... Up until now, the routine has been for Cathy and Kyle to visit MSK on a Thursday and then return the following weekend (after 48 hours) in order to bring back the empty canister (O'Bello) and allow technicians to remove the tube from Cathy’s port. During this last session at MSK, however, Cathy and Kyle were taught how to remove the tube themselves and did so without a problem. Since the empty canister can now be exchanged when Cathy goes in for her next Thursday chemo session, removing the tube at home saves Cathy and Kyle from having to make that weekend return trip. It’s little things like this that are a big plus.
In terms of side effects from the chemo, they have been mild so far - a touch of nausea, ‘tingling’ in the extremities, sensitivity to cold food - which Cathy has been handling very well and matter-of-factly.
The day at MSK was another long one but it allowed for an extra bonus this time. Cathy’s brother, Ken, visited with Cathy and Kyle at MSK after work and brought gyros from Gyro II (located across from Madison Square Garden and a popular pre-game stop for many New York Rangers hockey fans). Whenever Cathy attended Rangers games, she always looked forward to the gyros as much as the game so this was a real treat.
The "blue house" (NY) has been a beehive of activity since Kyle's return. The moving truck was unloaded, boxes moved and unpacked, and furniture arranged with invaluable help from Ken and brother Glenn. Team Cathy is still unpacking and finding every available storage space possible but as the pile of boxes in the living room slowly but surely shrinks, we know we’re almost there.
In the meantime, Carrigan has been delighted to ‘rediscover’ (and be reunited with) her toys as well as some favorite books; enjoys playing with her tea set and riding her tricycle; and is happy to be sleeping in her own crib again. For their part, Cathy and Kyle seem equally relieved to be back in their own comfy and familiar bed as well.
This move was also a big incentive for Cathy's parents to finally start to clean out and discard accumulations of almost 50 years! Frank and Marcia warn that this is what can happen when you never move (and are sure many blog readers are nodding their heads in agreement and sympathy right now)!
Considering the anxieties that naturally go along with waiting for someone to arrive safely from a long journey, we’re glad to report that Cathy’s latest chemo went well and followed the pattern of previous rounds with one key difference... Up until now, the routine has been for Cathy and Kyle to visit MSK on a Thursday and then return the following weekend (after 48 hours) in order to bring back the empty canister (O'Bello) and allow technicians to remove the tube from Cathy’s port. During this last session at MSK, however, Cathy and Kyle were taught how to remove the tube themselves and did so without a problem. Since the empty canister can now be exchanged when Cathy goes in for her next Thursday chemo session, removing the tube at home saves Cathy and Kyle from having to make that weekend return trip. It’s little things like this that are a big plus.
In terms of side effects from the chemo, they have been mild so far - a touch of nausea, ‘tingling’ in the extremities, sensitivity to cold food - which Cathy has been handling very well and matter-of-factly.
The day at MSK was another long one but it allowed for an extra bonus this time. Cathy’s brother, Ken, visited with Cathy and Kyle at MSK after work and brought gyros from Gyro II (located across from Madison Square Garden and a popular pre-game stop for many New York Rangers hockey fans). Whenever Cathy attended Rangers games, she always looked forward to the gyros as much as the game so this was a real treat.
The "blue house" (NY) has been a beehive of activity since Kyle's return. The moving truck was unloaded, boxes moved and unpacked, and furniture arranged with invaluable help from Ken and brother Glenn. Team Cathy is still unpacking and finding every available storage space possible but as the pile of boxes in the living room slowly but surely shrinks, we know we’re almost there.
In the meantime, Carrigan has been delighted to ‘rediscover’ (and be reunited with) her toys as well as some favorite books; enjoys playing with her tea set and riding her tricycle; and is happy to be sleeping in her own crib again. For their part, Cathy and Kyle seem equally relieved to be back in their own comfy and familiar bed as well.
This move was also a big incentive for Cathy's parents to finally start to clean out and discard accumulations of almost 50 years! Frank and Marcia warn that this is what can happen when you never move (and are sure many blog readers are nodding their heads in agreement and sympathy right now)!
Tuesday, June 21, 2011
The New Normal
A friend referred to the changes in our lives as the ‘new normal’ and that term seems to fit. As the years go by, we all come into new normals - teen years, college, marital status, babies, etc. So, here’s what this looks like at the moment:
Cathy, Kyle & Carrigan will be ‘fully’ moved in with Cathy's parents when Kyle returns to New York with the rest of their ‘stuff’. Carra is looking forward to having her tricycle and teapot set as well as sleeping in her own bed/crib.
Cathy has been able to enjoy the company of old friends and renew acquaintances since moving back to New York. This is in addition to seeing siblings, cousins and extended family more often.
Kyle is getting used to being surrounded by Yankee fans (although he has taught Carra to say “go Red Sox”). He continues to work on his perpetual ‘to do’ list which includes find a job, look for new doctors, organize files related to Cathy’s treatment, plus a myriad of other tasks.
Carrigan is enrolled in a daycare center from 8-12 noon Mon-Fri. In Florida, she was in daycare full-time from the age of 4 months so she seemed to miss this in NY. She went for a ‘trial day’ last week and had a great time playing with other children and also getting to ride a tricycle. It’s going to be a part of the day that both Carra and the adults look forward to. Cathy/Kyle have also been taking Carra to local playground parks in the area. Although the ‘airplane’ park she loved in St. Petersburg will be hard to replace, they have found several parks she enjoys where she can run off some of that high energy.
Of course, all of this is going on during the new norm of biweekly (every other week) chemo for Cathy. As the next session will be only the third one, we can’t predict if the effect on her will be the same as after the first or second. However, as it continues we may be able to discern a pattern of sorts and to come to know what to expect. Hopefully some changes can be made that will make the in-hospital chemo sessions shorter and less tiring and we’ll fill you in on that if that happens. In the meantime, we make plans around the chemo days and schedule activities for the ‘off’ week.
Cathy, Kyle & Carrigan will be ‘fully’ moved in with Cathy's parents when Kyle returns to New York with the rest of their ‘stuff’. Carra is looking forward to having her tricycle and teapot set as well as sleeping in her own bed/crib.
Cathy has been able to enjoy the company of old friends and renew acquaintances since moving back to New York. This is in addition to seeing siblings, cousins and extended family more often.
Kyle is getting used to being surrounded by Yankee fans (although he has taught Carra to say “go Red Sox”). He continues to work on his perpetual ‘to do’ list which includes find a job, look for new doctors, organize files related to Cathy’s treatment, plus a myriad of other tasks.
Carrigan is enrolled in a daycare center from 8-12 noon Mon-Fri. In Florida, she was in daycare full-time from the age of 4 months so she seemed to miss this in NY. She went for a ‘trial day’ last week and had a great time playing with other children and also getting to ride a tricycle. It’s going to be a part of the day that both Carra and the adults look forward to. Cathy/Kyle have also been taking Carra to local playground parks in the area. Although the ‘airplane’ park she loved in St. Petersburg will be hard to replace, they have found several parks she enjoys where she can run off some of that high energy.
Cathy's parents, Frank and Marcia, are getting used to the child safety gates and doorknob covers which gives them some peace of mind. They are in the routine of their expanded household and especially enjoy the sound of the ‘pitter patter of little feet’ overhead in the morning as Carra runs back and forth between the two bedrooms. Listening to Carra sing and talk in that delightful 2+ year old voice is priceless. With Cathy and Kyle here, there’s usually a full pot of coffee brewed, Marcia can plan fish for dinner (for 2) and they now have an in-house computer techie. Frank has his baseball-football-hockey TV partner again in addition to gaining a history/politics conversation partner.
Of course, all of this is going on during the new norm of biweekly (every other week) chemo for Cathy. As the next session will be only the third one, we can’t predict if the effect on her will be the same as after the first or second. However, as it continues we may be able to discern a pattern of sorts and to come to know what to expect. Hopefully some changes can be made that will make the in-hospital chemo sessions shorter and less tiring and we’ll fill you in on that if that happens. In the meantime, we make plans around the chemo days and schedule activities for the ‘off’ week.
Thursday, June 9, 2011
Portobello
Cathy has completed her second round of chemo. As you know from previous blog entries, Cathy has a port into which the chemo is administered over 48 hours from a bottle contained in a fanny pack. Cathy and Kyle consider the contraption part of the family now and, therefore, have taken to calling it O'Bello. (Port + O'bello = Portobello).
The only major side effects so far are sour stomach, fatigue and cold sensitivity. By cold sensitivity the doctors mean that if she drinks something from the fridge it will feel like needles going down her throat. These effects should only occur while the chemo is being administered and possibly for a few days after. The good news is that Cathy's form of chemo is not expected to cause a loss of hair, only a thinning and is supposedly mild in terms of nausea.
The only major side effects so far are sour stomach, fatigue and cold sensitivity. By cold sensitivity the doctors mean that if she drinks something from the fridge it will feel like needles going down her throat. These effects should only occur while the chemo is being administered and possibly for a few days after. The good news is that Cathy's form of chemo is not expected to cause a loss of hair, only a thinning and is supposedly mild in terms of nausea.
Friday, May 27, 2011
Chemo Starts Smoothly
Although yesterday was another long day at MSK, all went pretty smoothly with the start of Cathy's chemo. She came home wearing a small fanny pack that holds the chemo container and it does not generally restrict her movement. Fortunately they had inserted the port during the surgery in Florida. Although Cathy was tired from the long hours, she sounded upbeat. She is scheduled to receive chemo every other week in this manner. Even though the site of origin has not been officially identified, the protocol being followed is the same as for gastrointestinal cancers. Our hope and expectation is that future sessions will be shorter.
Thursday, May 26, 2011
Cathy to Start Chemo Today
After an initial visit to MSK last week when Cathy registered and met with her doctors as well as the finance department, she was given an appointment for an EKG and CT scan with plans for chemo to start a few days later. However, even though Kyle and Cathy were told numerous times everything was OK (meaning all papers needed were filed/sent to the appropriate offices), the last few days have been spent going around in circles with insurance, financial and scheduling. Now that all the paperwork has finally been settled, Cathy will be starting her treatment today.
Cathy will be meeting with her oncologist in the morning so she can explain all the chemo. After that, she will get bloodwork and be hooked up to a chemo bag which Cathy will have to wear for 48 hours in order to receive the prescribed initial dose (assuming it is a waist pack bag, though, Cathy has been told she should be able to go about her usual routine). After that she will have a CT scan of her chest, abdomen and pelvis. It'll be a pretty long day but we are glad she can start chemo now instead of having to wait.
Kyle has already flown back up to New York to be with Cathy for this first round of chemo and, in fact, will be staying. Carrigan missed Kyle terribly when he went back to their 'old home' aka 'yellow house' and now delights in having him back in their 'new home' aka 'blue house'. Kyle also missed Carra and Cathy way too much so, after talking to his school, he has taken his leave of absence effective immediately.
For her part, Carra is quickly getting acquainted with her new surroundings. Baby gates were installed in key locations to give everyone more peace of mind as Carra explores but baby-proofing continues around the house as everyone delights in her antics and discovers just how resourceful she can be. Meanwhile, Carra and her cousin Bryce (almost two years old) are having lots of fun playing together and everyone has a good time listening to their conversations.
Thursday, May 19, 2011
New York
TeamCathy has arrived safely in New York after traveling via Amtrak Auto Train from Sanford, Florida to Lorton, Virginia. The Auto Train is obviously not as fast as flying but it is a great way to shorten a long trip while still allowing for a car. The ride was a little bumpy but proved to be an enjoyable new adventure for Carrigan.
The long train trip was followed by a shorter car ride rewarded with a relaxing overnight visit with Cathy's brother Michael. In addition to enjoying Michael & Gary's "B & B" hospitality, Carrigan got to play with cousins Tyler and Daniel, run barefoot in the grass with Uncle Gary trying to keep up, and to have a field day in the upstairs playroom. Oh, what fun!
In preparation for TeamCathy's arrival in New York, Cathy's brothers had already moved, cleared, sorted, and reorganized stuff in a suite of rooms at their parent's house last weekend to make room for Cathy, Kyle and Carrigan in their 'new' home. Although there is still moving and unpacking to be done, they will have a cozy, comfy, familiar place of their own.
in addition to packing, there were a lot of other things to take care of before leaving Florida. Getting everything necessary in place for Cathy to be treated at Memorial Sloan Kettering remains the most important task. Fortunately, Kyle is handling this monumental job - including coordinating health insurance, getting medical records faxed/sent, filing leave documents, and lots of phone calls - in a super-organized manner.
Both Cathy and Kyle (as well as all of us on TeamCathy) are grateful for the cooperation they've received from the doctors and their staffs, from their schools' various offices and reps, and from MSK's reps. We still have a long way to go and know the path is not going to be an easy one so we continue to value the support and prayers that everyone has offered. Thank you!
The long train trip was followed by a shorter car ride rewarded with a relaxing overnight visit with Cathy's brother Michael. In addition to enjoying Michael & Gary's "B & B" hospitality, Carrigan got to play with cousins Tyler and Daniel, run barefoot in the grass with Uncle Gary trying to keep up, and to have a field day in the upstairs playroom. Oh, what fun!
In preparation for TeamCathy's arrival in New York, Cathy's brothers had already moved, cleared, sorted, and reorganized stuff in a suite of rooms at their parent's house last weekend to make room for Cathy, Kyle and Carrigan in their 'new' home. Although there is still moving and unpacking to be done, they will have a cozy, comfy, familiar place of their own.
in addition to packing, there were a lot of other things to take care of before leaving Florida. Getting everything necessary in place for Cathy to be treated at Memorial Sloan Kettering remains the most important task. Fortunately, Kyle is handling this monumental job - including coordinating health insurance, getting medical records faxed/sent, filing leave documents, and lots of phone calls - in a super-organized manner.
Both Cathy and Kyle (as well as all of us on TeamCathy) are grateful for the cooperation they've received from the doctors and their staffs, from their schools' various offices and reps, and from MSK's reps. We still have a long way to go and know the path is not going to be an easy one so we continue to value the support and prayers that everyone has offered. Thank you!
Wednesday, May 11, 2011
Diagnosis: Adenocarcinoma of unknown origin
Cathy had her long-awaited appointment with her oncologist today and the official diagnosis is adenocarcinoma of unknown origin (which basically means they don't know the source).
Fortunately, we hear that this is not so unusual and Memorial Sloan Kettering has protocols for treating this. We have already made contact with MSK and they are coordinating everything that's needed with the Florida oncologist's office in order to make a smooth transition. Because the cancer is of unknown origin, we expect to be referred to a general oncologist. We thank everyone for their advice and recommendations while we were going thru this process.
Cathy is doing very well in her recovery and amazing her doctors. The doctor asked Cathy how her appetite has been and Cathy told the doctor it was very good. In fact, Cathy was concerned she was eating too much and was gaining weight. To her surprise, the doctor said she should eat what she wants - milkshakes, burgers, etc - and not worry as patients who gain weight before chemo do better. So, bring on the 'boo-fay'.
It is so interesting to see things thru the eyes of a little one and how much pleasure they get from simple things. Carrigan has been so good and understanding that Mommy can't pick her up but says, "when Mommy better, sit on Mommy's lap". Since Cathy's been home she enjoys just cuddling next to Mommy which she missed during the hospital stay. We are looking forward to getting up to NY shortly. Carrigan is ready to go to Goong (Grandpa) & Pau's (Grandma) house and to see her uncles and cousins and the move will also bring her to closer proximity to the Nevin side.
Although TeamCathy is ready to get moving on to the next step, Cathy's doctors have said chemo does not have to start immediately. In fact they say that patients who have additional time to recover from their surgeries do better with chemo because they're stronger. This definitely reduces some level of stress that we do not have to rush into the next stage.
Sunday, May 8, 2011
Mother's Day
Cathy's brothers Michael and Glenn were able to take a few days off work to come visit Cathy and also to help get ready for the move north. As anyone knows, packing to move is not easy - especially when you come from a line of packrats. They're off to a good start with over a dozen boxes packed, numbered, catalogued and inventoried.
On Friday morning, mommy Cathy, daddy Kyle, Uncles Michael and Glenn as well as Pau (grandma) went to Carrigan's daycare for her "Young 2s Mother's Day Celebration" where everyone delighted in watching Carrigan and her classmates perform. The children sang, wiggled, and did all the hand motions as only 2+ year olds can do... which put smiles on everyone's faces!
Tuesday, May 3, 2011
Next Steps
Now that Cathy is home, TeamCathy is working on what's to follow.
Kyle is addressing steps necessary to have Cathy treated at Memorial Sloan Kettering in New York City where many TeamCathy family members are already living nearby and standing ready to help out. The plan is for Cathy, Kyle, and Carrigan to move in with her parents in suburban Rockland (less than an hour from Manhattan) as soon as possible. There will be a bit of child-proofing to do but they are looking forward to hosting them.
Kyle will be taking a leave of absence from his teaching job in Florida and will be looking for a job in the NY metropolitan area. He would ideally like to find a teaching job in Social Studies, middle school or high school. So if you know or hear of anything (or have any helpful connections), please let us know.
Cathy's mom will be staying in Florida until she, Cathy, Kyle and Carrigan can all travel north together. She writes "by that time, I expect I'll understand Carrigan even better than I do now. After all, it's been a long time since I've been with a 2 1/2 year old on a daily basis. She's a delight; I call her 'Sunshine'... and she really is."
In the meantime, Cathy's father is returning home for a follow-up appointment with his own (hip replacement) surgeon this week. He has already given Cathy one of his canes to use in helping her move about so the two of them will just need the straw hats to start working out a tap routine. Sooper-dooper!
Monday, May 2, 2011
Happy Family - A Note From Kyle
Tonight we are celebrating! Cathy is back home recovering very well from surgery.
Perhaps Carrigan said it best "Mommy I happy you home" and then proceeded to do several somersaults - well, the type of somersaults that 2-1/2 year olds do. Carrigan has handled this very well. Fortunately, we were able to call Cathy on the phone pretty much whenever Carrigan would ask for her or start crying for her. She would immediately begin to smile and go back to playing / making a mess. I don't think I can put into words how much tonight means to us all after seven days apart while Cathy was in the hospital.
Often when Cathy, Carrigan and I lay in bed together to cuddle she will put her arms around our necks and pull us so all of our heads are touching and will say "happy family". Over the past 7 days when I would say "happy family" she would say, "No, mommy not here". Tonight she said "Happy family" again.
Perhaps Carrigan said it best "Mommy I happy you home" and then proceeded to do several somersaults - well, the type of somersaults that 2-1/2 year olds do. Carrigan has handled this very well. Fortunately, we were able to call Cathy on the phone pretty much whenever Carrigan would ask for her or start crying for her. She would immediately begin to smile and go back to playing / making a mess. I don't think I can put into words how much tonight means to us all after seven days apart while Cathy was in the hospital.
Often when Cathy, Carrigan and I lay in bed together to cuddle she will put her arms around our necks and pull us so all of our heads are touching and will say "happy family". Over the past 7 days when I would say "happy family" she would say, "No, mommy not here". Tonight she said "Happy family" again.
Cathy Is Home
Cathy just got home from the hospital. Her colonoscopy was at about 3:30pm but she wasn't released until a few hours later because they wanted her to eat before leaving the hospital to be sure she wasn't nauseous. Cathy is naturally delighted to be home and she is moving very well. It's hard to believe she had major surgery just six days ago.
Back home, Carrigan looked at her a little warily at first but they found out she just didn't like the hospital 'bracelets'. As soon as Cathy took them off, Carrigan was her usual chatty self.
As far as what the colonoscopy said, we may not hear specifics for another week or so but will update this blog as soon as we know.
Saturday, April 30, 2011
Ovarian & Stomach Cancers Ruled Out - Probably Gastrointestinal
Although Cathy has not had the colonoscopy yet, her doctor visited today and informed her they definitely ruled out ovarian & stomach cancers through pathology. They now think it is a GI (gastrointestinal) cancer so we are looking to hook up with a GI oncologist at Sloan-Kettering. If you have a connection at Sloan-Kettering and/or in Gastrointestinal Oncology, please let us know.
Kyle sounds very positive about this development and has been reading a lot about treatment, etc. Also the fact that Cathy does not fit the profiles, age, health problems, etc and will have a strong support system in New York is a big plus.
We will definitely send an update after the colonoscopy on Monday. If you want to be alerted as soon as the new post is up, the easiest way is to subscribe as a blog follower.
Kyle sounds very positive about this development and has been reading a lot about treatment, etc. Also the fact that Cathy does not fit the profiles, age, health problems, etc and will have a strong support system in New York is a big plus.
We will definitely send an update after the colonoscopy on Monday. If you want to be alerted as soon as the new post is up, the easiest way is to subscribe as a blog follower.
Friday, April 29, 2011
Colonoscopy Postponed
Doctors thought they might do colonoscopy today but the timing did not work out so now it will have to wait until after the week-end. If they do it early on Monday, Cathy might even be discharged later that same day. Cathy is in good spirits and moving about very well. She is already off pain meds and walking down the hall.
Wednesday, April 27, 2011
Some Good News
Cathy's parents were visiting when her oncologist gave her the news of her endoscopy. Cathy does NOT have stomach cancer. The gastro doctor will be doing a colonoscopy for the lower half, so we're still in a wait-and-see mode but this news gave us something to cheer about.
In other good news, Kyle has found out that his employer will let him switch from his current Humana plan to Humana POS National because of the circumstances. This change would probably start June 1 and would be necessary for any transfer to a New York area hospital such as Sloan-Kettering. The thinking right now is that Cathy will likely start chemo in Florida but would have the flexibility to switch to Sloan after June 1.
Cathy is in good spirits, using the button to push the painkiller, and they got her out of bed while her parents were there for her first walk. She said it felt good to get out of bed.
Update from Kyle
Cathy checked into the hospital at 5:30 am and the surgery took several hours. Cathy is recovering well and is in good spirits. we have a long battle ahead of us fighting this cancer which is going to be more difficult than we thought. They are still running tests to find the source, it is not ovarian as expected. We should know more Friday. Without trying to freak anybody out the cancer is more severe than they realized and she will need very aggressive treatment. Fortunately she is young and strong so they can be aggressive. In fact the doctor could not believe she had such major surgery earlier in the day when he visited her in the evening. she was conversing well, telling jokes and just taking it in stride. Her skin looks great, not at all pale. She's a very strong woman (her dad says she gets that from him).
The hospital is Bayfront Medical Center, 701 6th Street South, St. Petersburg, FL 33701-4891
The hospital is Bayfront Medical Center, 701 6th Street South, St. Petersburg, FL 33701-4891
Thursday, April 21, 2011
A Message From Cathy
This past Monday I was diagnosed with cancer. After numerous tests, scans and appointments we found out today that it is stage 4 and most likely either ovarian or colon cancer. I will be undergoing surgery on Tuesday morning and should know after that which cancer I have. I will most likely start an aggressive chemo program 2-3 weeks later depending on my recovery from surgery.
This all began when I noticed a lump on my neck in late December and got it checked out a few weeks later. I had blood tests done and the doctor said the results were great and indicated that it wasn't cancer. I went to an ENT who referred me for a needle biopsy which I got last Friday. This Monday I got a call to see the ENT and she told me the cells were malignant. She was as shocked as I was. The timing was actually fortunate in that I had been having some abdominal discomfort for the past 2 weeks and noticed tenderness this past weekend so I had taken a day off to see my ob-gyn. I told her my diagnosis and she did an ultrasound which indicated tumors in my abdominal area. She was able to refer me to the ob-gyn oncologist I saw today who will be doing my surgery. I had a PET scan yesterday which shows that the cancer doesn't seem to have spread to any other organs so I am thankful and hopeful about that.
As you can imagine, the past 4 days have been a blur. Obviously, my biggest concern is Carrigan but she is also my biggest source of strength. I am also very fortunate to have a supportive husband, family and friends.
This is obviously a very emotional and difficult time for us. I know I have your support, prayers and positive thoughts and that mean so much to me. I will keep you updated.
Love,
Cathy
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