August 10-12, 2014
Sorry for the delay in writing. I'm actually five days into the fifth chemo, but the delay in writing is actually a good thing. I'm feeling quite good under this new regimen, and overall, just very thankful for where I am, the health of my family, the new house that we will be moving into, just everything in general.
We also received some very good news from the latest CT scan...well, we weren't actually scheduled for a scan, but if you remember, last session, I got really fatigued and they were worried I might have a blood clot. So they did a CT scan on the upper part of my chest, but it also picked up my lungs and a good portion of my liver and they showed some shrinkage on the lungs and no growth on the liver. Fantastic news!!! We'll probably do the next CT scan sometime in early September so hopefully the progression continues.
I talked to you about some of the side effects I am experiencing in previous emails, and really, the three that most frustrate me are the cold sweats on Day 1, the neuropathy which so far has not gone away, and the fatigue that hits me as I come off the steroid. The cold sweats are just the worst - no matter what I do, I just sweat for no reason - I'm not hot or cold. I tried sleeping on an air mattress in the office room but every time I fell asleep, I woke up drenched. I go through about 10 towels and five or six change of clothes and I think I am stuck with this throughout this regimen. Oh well, one day is not so bad. The neuropathy stayed about the same - I think I am also stuck with it throughout this regimen. The good news is that on Day 7, instead of going to the hospital like last time, I made it through the day, so progress!!
I haven't talked much about it, but we have been in the process of buying a house here in the Boston area. We have been living in a corporate rental, because my assignment here was supposed to be temporary and end at the end of August. Of course, that has all changed, and we decided that rather than move back to Denver, we are going to settle permanently here in Boston. There are many reasons for this decision, the top one being the level of medical care that I can get here. The Dana-Farber Clinic is one of the top cancer clinics in the country, and I just can't get that coverage in Denver. Other reasons include proximity to family, good opportunities for Karla due to a significant deaf community here, and also good opportunities for me with RSI, as five of our client states are in short driving distance. The reality of my life is that I am highly unlikely to go back to traveling by plane 4 days per week (which I would likely have to do from Denver), and to be honest, I'm not even ready yet to be on client site on a regular basis (I really don't know how I'll react to fatigue and side effects on a daily basis). We have had significant support from our parents in allowing us to be able to get a house - honestly, we could not do it without them. We spent a good four months looking mainly in the Reading area, but prices are just ridiculous. We settled on a fixer-upper (mainly cosmetic fixes) in South Walpole which is to the southwest of Boston. It's a great house and we closed on it on July 31. There was some work to be done on it (mainly floors and walls) so we won't actually move until August 28.
Leslie Geraghty also came up for a few days from Jersey on August 6-8. It was great to see Les again and she got to spend some quality time with Graeme. I can't believe how lucky Karla and I are to have the friends we do. Les is one of those people who just makes you feel at ease. Hopefully, we may get to see the whole Geraghty clan sometime in the fall.
Isla and Graeme continue to amaze me every day. I find myself, as a 48 year old, looking over at them and saying to myself: "I have a little girl and a little boy", and just shaking my head. It's unbelievable how much life they bring to our house. Seriously, just a wry smile from Graeme or an offhand comment from Isla and I can completely forget about what's going on in my life.
I did want to make a comment about Robin Williams. I can't begin to know or understand how depression affects people, and so any comments I make in this paragraph are made with ignorance on the subject. But I just can't believe, as I fight and fight to be a part of my children's lives long term that someone would choose to leave this life. I feel sadness at his passing but also some anger as he left three children behind. Again, I can't begin to understand what was going through his head, but my children are going to get every last ounce out of me (whether they like or not!).
Love to all
Andrew
Wednesday, August 13, 2014
Monday, July 21, 2014
Third Chemo (Regimen 2)
July 21, 2014
Hi all. Two days away from my next chemo session so I thought I would give you an update. We are expecting my parents this evening and they will be staying in the area through Saturday. I find that I value each visit from them more and more, not only for the impact they have on my kids but also for the conversations and discussions we have as a family. It's a tall order to ask them to come down every month but they are up to the task. Also hoping to catch up with Michelle Biggs who is in town next weekend. I can't believe we all graduated from McGill 22 years ago now...
So lets talk about the chemo first and then same family updates to follow. Day 1 (July 9) started at the clinic. We see a great nurse, Heather, who has been able to manage to cold sweats at the hospital. Unfortunately, they do not go away until the morning of Day 2 so it's pretty miserable that first night. This time, I slept on towels on the couch and changed clothes frequently. I will say that Day 2 and Day 3, on this new regimen, once the sweats are over, is quite manageable. So much so that I was confident that I could handle visitors on the weekend, so Mike Wulfkuhle and Jayne Yelich flew out from Denver and Scott and Pam Hastings drove up from New Jersey. It was a great visit and we even got to eat out at Strega Prime Italian Steakhouse on Saturday night, which was an amazing dinner. And we got to see photos of the owner with pretty much every famous Italian American of whom you could think.
Monday was an OK day but Tuesday (Day 7) was a disaster. I could hardly move, I was so fatigued. I also had this weird feeling in my upper chest that I'd been hit by a puck or a punch. I lay in bed for most of the day and was unable to work. Karla booked a checkup appointment for the next day at the clinic. I was feeling better on Wednesday when I woke up, but maybe 75% of where I should be so we decided to go in. It turned into a long day at the clinic where I was infused with potassium and saline (my levels were extremely low - not sure why). I was also given a prescription for potassium pills that are so big, a horse would have trouble getting them down. I also went for a CT scan (but not one that would look at my cancer levels). Instead the scan focused on my upper chest, as my doctor was worried about blood clots. The tests came back negative but nothing to indicate why I had such a bad Tuesday.
Since then, I've felt pretty good for the most part. I'm a bit slow to start in the morning but after taking my medication, I seem to respond quite positively. A bit of a boost in the afternoon has also paid some dividends. Seriously, if my Day 10 - Day 13 feeling becomes more consistent, then I can start thinking about doing additional things (walking, running errands, appearing on American Ninja Warrior, that kind of stuff).
Still dealing with the neuropathy. It makes me feel like a bit of a dork sometimes. I can't open certain containers, I randomly drop things, I can't really "feel" Graeme and Isla when I touch them. I also got my hair cut short. I don't know if chemo is thinning my hair of 48 years on this planet. However, chemo has definitely changed the texture and consistency of my hair. We got some passport photos taken this weekend, so it should give you an idea of what to expect.
As you can see, the family is all well. Graeme is smiling more, and he usually starts with a wry smile to the left, and then a full on smile. I love getting that feedback from him. I even got him to laugh with me the other night, although his laughs right now consist of coos, exclamations and other noises, and not necessarily what you would call a full-onlaugh.
Isla is awesome. She and our au pair Amarilis spend a lot of time at the pool, and we are now at the point where she gets lessons on Monday at the local YMCA. She has entered a new phase where sometimes she wants to accompany Mommy or Daddy no matter what they are up to. Daddy is learning a lot more patience! She's still into Frozen, but now with a smattering of Brave. I also read her Tintin books some nights, but oh my God, some of the language, violence and treatment of others of different races has to be very carefully edited...
Congrats to Rory McIlroy on his British Open win. Maybe Tiger is not the person we should be focusing on to break Jack's records.
Love to all of you.
Andrew
Hi all. Two days away from my next chemo session so I thought I would give you an update. We are expecting my parents this evening and they will be staying in the area through Saturday. I find that I value each visit from them more and more, not only for the impact they have on my kids but also for the conversations and discussions we have as a family. It's a tall order to ask them to come down every month but they are up to the task. Also hoping to catch up with Michelle Biggs who is in town next weekend. I can't believe we all graduated from McGill 22 years ago now...
So lets talk about the chemo first and then same family updates to follow. Day 1 (July 9) started at the clinic. We see a great nurse, Heather, who has been able to manage to cold sweats at the hospital. Unfortunately, they do not go away until the morning of Day 2 so it's pretty miserable that first night. This time, I slept on towels on the couch and changed clothes frequently. I will say that Day 2 and Day 3, on this new regimen, once the sweats are over, is quite manageable. So much so that I was confident that I could handle visitors on the weekend, so Mike Wulfkuhle and Jayne Yelich flew out from Denver and Scott and Pam Hastings drove up from New Jersey. It was a great visit and we even got to eat out at Strega Prime Italian Steakhouse on Saturday night, which was an amazing dinner. And we got to see photos of the owner with pretty much every famous Italian American of whom you could think.
Monday was an OK day but Tuesday (Day 7) was a disaster. I could hardly move, I was so fatigued. I also had this weird feeling in my upper chest that I'd been hit by a puck or a punch. I lay in bed for most of the day and was unable to work. Karla booked a checkup appointment for the next day at the clinic. I was feeling better on Wednesday when I woke up, but maybe 75% of where I should be so we decided to go in. It turned into a long day at the clinic where I was infused with potassium and saline (my levels were extremely low - not sure why). I was also given a prescription for potassium pills that are so big, a horse would have trouble getting them down. I also went for a CT scan (but not one that would look at my cancer levels). Instead the scan focused on my upper chest, as my doctor was worried about blood clots. The tests came back negative but nothing to indicate why I had such a bad Tuesday.
Since then, I've felt pretty good for the most part. I'm a bit slow to start in the morning but after taking my medication, I seem to respond quite positively. A bit of a boost in the afternoon has also paid some dividends. Seriously, if my Day 10 - Day 13 feeling becomes more consistent, then I can start thinking about doing additional things (walking, running errands, appearing on American Ninja Warrior, that kind of stuff).
Still dealing with the neuropathy. It makes me feel like a bit of a dork sometimes. I can't open certain containers, I randomly drop things, I can't really "feel" Graeme and Isla when I touch them. I also got my hair cut short. I don't know if chemo is thinning my hair of 48 years on this planet. However, chemo has definitely changed the texture and consistency of my hair. We got some passport photos taken this weekend, so it should give you an idea of what to expect.
As you can see, the family is all well. Graeme is smiling more, and he usually starts with a wry smile to the left, and then a full on smile. I love getting that feedback from him. I even got him to laugh with me the other night, although his laughs right now consist of coos, exclamations and other noises, and not necessarily what you would call a full-onlaugh.
Isla is awesome. She and our au pair Amarilis spend a lot of time at the pool, and we are now at the point where she gets lessons on Monday at the local YMCA. She has entered a new phase where sometimes she wants to accompany Mommy or Daddy no matter what they are up to. Daddy is learning a lot more patience! She's still into Frozen, but now with a smattering of Brave. I also read her Tintin books some nights, but oh my God, some of the language, violence and treatment of others of different races has to be very carefully edited...
Congrats to Rory McIlroy on his British Open win. Maybe Tiger is not the person we should be focusing on to break Jack's records.
Love to all of you.
Andrew
Saturday, July 12, 2014
Thoughts on the World Cup
June 12
Just wanted to write down some thoughts on the 2014 edition of the World Cup:
1. Location in Brazil. I think it has been quite a success in Brazil so far. The naysayers were out in force before the tournament, but it appears that thinks are working out nicely (knock on wood) as I write this before the last game. Sure, there are some negatives, I mean who builds a 50,000 seat stadium in the middle of the jungle for a city that doesn't have a major airport, nor a major soccer team. I don't see the stadium in Manaus turning out to be anything but the white elephant that it is. On the flip side, it has been wonderful to see the celebrations on the beach at Copacabana. Karla and I spend wonderful bookends to our South American vacation in Rio and loved the place. We are glad the rest of the world is seeing it in all its glory. Whether it will be able to host the Olympics on its own in a few years remains to be seen, but as a soccer host, it's been great and we can't wait to see the final at Maracana (where Karla and I got to see Flamengo vs Fluminense). Should be great.
2. Overall quality of the soccer. I have one word...brutal. I had no idea that soccer had come to this point in development where tackles are late, studs are up, full body checks are legal and referees have decided that yellow cards are unnecessary. Don't get me wrong, I have enjoyed a lot of the play, and watching Neymar, James, Messi and Muller has been a joy to see such skill displayed on the field. But watching Neymar go out on an obvious, and unpenalized, tackle by Zuniga (keep wanting to call him Daphne for some reason...) as well as the excessively late tackles from behind committed by all teams has disgusted me. I know the refs have been instructed by FiFA to lay off on the cards so the good players aren't suspended, but come on, it was getting ridiculous.
3. The play of the Brazilian team. Very disappointing. You can lump England in there too, but Brazil stands out above the rest. They are at home, and coming of a major championship last year. I expected to see offensive flair and finesse from them, and while Neymar provided some of that flair in the opening rounds, where were Fred, Oscar, Jo and others of whom I've heard so much about. Fred also loses big time in choice of nickname. "Fred"? I know that Brazilians have excessively long names and choose nicknames to make thing simpler (did you know that Brazilian great Pele was really Edson Arantes do Nascimento? - quite a name on the back of the shirt! But Fred??? How about Barney, or Nigel (or just Nige for short). Even Kaka was better at a previous cup. But enough on the names, their play has been brutal. Did you see the Colombia game where Neymar got hurt? The Brazilians were worse. There were six fouls on James (Colombia's star) alone, something that should have garnered several cards. But what did Brazil get a card for?? Something as infantile as Thiago Silva knocking the ball out of the goalie's hands as he was about to kick it. Just dumb. Instead of being impressed with their playmaking, I was disgusted by their style. And don't get me started on Hulk...
4. The play of the CONCACAF teams. Three of our group got to the final 16. Great accomplishment and hope for Canada down the road. And the Ticos getting to the quarters. Awesome stuff. Sure I would have like to see the US progress, but a fine showing from a young team who will be better in four years in Russia.
5. Finally, can't complain about the final. Germany Argentina should be a great game (Germany Netherlands would have been great too). I'm hoping we see an all out match, rather than what we saw in the Argentina Netherlands semi, and I predict a German win. Not sure what Brazilian team will show up today in the third place match.
Andrew
Just wanted to write down some thoughts on the 2014 edition of the World Cup:
1. Location in Brazil. I think it has been quite a success in Brazil so far. The naysayers were out in force before the tournament, but it appears that thinks are working out nicely (knock on wood) as I write this before the last game. Sure, there are some negatives, I mean who builds a 50,000 seat stadium in the middle of the jungle for a city that doesn't have a major airport, nor a major soccer team. I don't see the stadium in Manaus turning out to be anything but the white elephant that it is. On the flip side, it has been wonderful to see the celebrations on the beach at Copacabana. Karla and I spend wonderful bookends to our South American vacation in Rio and loved the place. We are glad the rest of the world is seeing it in all its glory. Whether it will be able to host the Olympics on its own in a few years remains to be seen, but as a soccer host, it's been great and we can't wait to see the final at Maracana (where Karla and I got to see Flamengo vs Fluminense). Should be great.
2. Overall quality of the soccer. I have one word...brutal. I had no idea that soccer had come to this point in development where tackles are late, studs are up, full body checks are legal and referees have decided that yellow cards are unnecessary. Don't get me wrong, I have enjoyed a lot of the play, and watching Neymar, James, Messi and Muller has been a joy to see such skill displayed on the field. But watching Neymar go out on an obvious, and unpenalized, tackle by Zuniga (keep wanting to call him Daphne for some reason...) as well as the excessively late tackles from behind committed by all teams has disgusted me. I know the refs have been instructed by FiFA to lay off on the cards so the good players aren't suspended, but come on, it was getting ridiculous.
3. The play of the Brazilian team. Very disappointing. You can lump England in there too, but Brazil stands out above the rest. They are at home, and coming of a major championship last year. I expected to see offensive flair and finesse from them, and while Neymar provided some of that flair in the opening rounds, where were Fred, Oscar, Jo and others of whom I've heard so much about. Fred also loses big time in choice of nickname. "Fred"? I know that Brazilians have excessively long names and choose nicknames to make thing simpler (did you know that Brazilian great Pele was really Edson Arantes do Nascimento? - quite a name on the back of the shirt! But Fred??? How about Barney, or Nigel (or just Nige for short). Even Kaka was better at a previous cup. But enough on the names, their play has been brutal. Did you see the Colombia game where Neymar got hurt? The Brazilians were worse. There were six fouls on James (Colombia's star) alone, something that should have garnered several cards. But what did Brazil get a card for?? Something as infantile as Thiago Silva knocking the ball out of the goalie's hands as he was about to kick it. Just dumb. Instead of being impressed with their playmaking, I was disgusted by their style. And don't get me started on Hulk...
4. The play of the CONCACAF teams. Three of our group got to the final 16. Great accomplishment and hope for Canada down the road. And the Ticos getting to the quarters. Awesome stuff. Sure I would have like to see the US progress, but a fine showing from a young team who will be better in four years in Russia.
5. Finally, can't complain about the final. Germany Argentina should be a great game (Germany Netherlands would have been great too). I'm hoping we see an all out match, rather than what we saw in the Argentina Netherlands semi, and I predict a German win. Not sure what Brazilian team will show up today in the third place match.
Andrew
Friday, July 11, 2014
Second Chemo (Regimen 2)
July 11
I'm at home on Day 3 of being infused with chemo on the Third chemo session of Regimen 2. So what happened over the past two weeks during the Second session:
So same experiences at the clinic with respect to the cold sweats: they really start coming on near the end of my infusion on site, and then the continue for the remainder of the day and well into the night on that first day. I basically was awake until 1AM until I felt somewhat comfortable enough to lie in bed with towels underneath me. Several cold changes over the night. The sweats start to subside by Day 2. As happened during the first session, no jaw pain on Day 2, so perhaps that is a thing of the past.
Over the course of the next two weeks, there were good days and bad days (sometimes good hours and bad hours). The neuropathy came on really strong, which was surprising to me as I thought it would start going away, and not get worse. However, I've since heard that the new drug Irinotecan, while not increasing any of the previous side effects, also does not do much for healing of those side effects, so I should expect the neuropathy to hang around a bit. I have to get Karla to open certain things and cutting fingernails has become a chore, but I'll deal with it.
I think the toughest thing is knowing that I am not going to get a break from chemo, and will continue to be on these two week schedules for the near to long future. I am scheduled out to September now and will just keep plugging away. I can work, and I can do some chores around the house, but I just have to take it slow and not overdo things. I am forcing myself to take naps on work days and that seems to be helping.
The family is all well. Graeme is starting to sleep for longer periods at night, which is giving Karla some breaks. He really is a great little boy. His favorite spot is the baby swing, which has a mobile suspended above him. He laughs and giggles a lot in their, more so than when he is held by Karla, Amarilis or I. It's really cute. Isla is fascinated with Disney's Frozen, and can't stop talking about Anna and Elsa. She watches the movie frequently and insists on Frozen books before bed. She and Amarilis are making full use of the complex's pool each day, and she has made many friends there, which is great.
I think I'll write a separate blog over the next few days to express my thoughts on the World Cup. It has been thoroughly entertaining, to say the least. And for all of you who send texts and emails, thanks so much. Sometimes it takes me a while to respond, and I apologize for that, but know that I love to hear from all of you, especially as some of us are so far apart.
Love to all of you.
Andrew
I'm at home on Day 3 of being infused with chemo on the Third chemo session of Regimen 2. So what happened over the past two weeks during the Second session:
So same experiences at the clinic with respect to the cold sweats: they really start coming on near the end of my infusion on site, and then the continue for the remainder of the day and well into the night on that first day. I basically was awake until 1AM until I felt somewhat comfortable enough to lie in bed with towels underneath me. Several cold changes over the night. The sweats start to subside by Day 2. As happened during the first session, no jaw pain on Day 2, so perhaps that is a thing of the past.
Over the course of the next two weeks, there were good days and bad days (sometimes good hours and bad hours). The neuropathy came on really strong, which was surprising to me as I thought it would start going away, and not get worse. However, I've since heard that the new drug Irinotecan, while not increasing any of the previous side effects, also does not do much for healing of those side effects, so I should expect the neuropathy to hang around a bit. I have to get Karla to open certain things and cutting fingernails has become a chore, but I'll deal with it.
I think the toughest thing is knowing that I am not going to get a break from chemo, and will continue to be on these two week schedules for the near to long future. I am scheduled out to September now and will just keep plugging away. I can work, and I can do some chores around the house, but I just have to take it slow and not overdo things. I am forcing myself to take naps on work days and that seems to be helping.
The family is all well. Graeme is starting to sleep for longer periods at night, which is giving Karla some breaks. He really is a great little boy. His favorite spot is the baby swing, which has a mobile suspended above him. He laughs and giggles a lot in their, more so than when he is held by Karla, Amarilis or I. It's really cute. Isla is fascinated with Disney's Frozen, and can't stop talking about Anna and Elsa. She watches the movie frequently and insists on Frozen books before bed. She and Amarilis are making full use of the complex's pool each day, and she has made many friends there, which is great.
I think I'll write a separate blog over the next few days to express my thoughts on the World Cup. It has been thoroughly entertaining, to say the least. And for all of you who send texts and emails, thanks so much. Sometimes it takes me a while to respond, and I apologize for that, but know that I love to hear from all of you, especially as some of us are so far apart.
Love to all of you.
Andrew
Tuesday, June 24, 2014
Third CT Scan and First Chemo (Regimen 2)
June 24
I'm at home on Day 2 of being infused with chemo on the Second chemo session of Regimen 2. So what happened over the past two weeks:
First off, the results of the third CT scan to see if tumors were the cause of my fatigue, or was it a virus, blood issue, etc. Basically, the doctors could not see anything that would be causing my issues aside from the chemo regimen itself. they had hoped to go at least one more session on the old regimen, especially as their had not been significant regrowth in my tumors. Remember that the goal of the chemo session is to shrink/reduce the tumors or at least slow regrowth. However, because of the serious issues I was feeling with fatigue and that I was starting to get more serious neuropathy with the first regiment, the decision was made to move on to the next chemo regimen.
I do want to stress that while there has been some regrowth in the tumors, I am nowhere near were I was in January. The tumors are still smaller and less dense, but as the third CT scan results showed, they were starting to make a comeback.
The second regiment would be like the first, still using the Antivastin, and still three days of the 5-FU infused slowly. The change would be to replace the Oxalyplatin with a new drug called Irinotecan. Its side effect are more moderate, mainly diarrhea during the three day infusion which can be managed quite effectively through Immodium. So no more increases in neuropathy (although it may take months for the effects of the Oxalyplatin to go away completely). Also, I may not experience the jaw pain that has plagues me on Day 2 of most of the first nine sessions.
So I got my infusion started, including a second blood transfusion because of low numbers in some of my blood levels. What is still frustrating is the sweats I get in conjunction with the chemo and the seem to last a long way into the night especially on Day 1. They are not painful in any way, but having to change you clothing constantly is somewhat unpleasant.
In any case the second regimen went fantastic and essentially was like the fifth or sixth regimen under the first chemo plan. The major fatigue, is gone, as is the jaw pain and I was able to put in some solid full day work for RSI. In a much better place which is great, as a lot of stuff has been going on.
Graeme is growing like gangbusters. He was well over 10 pounds at his one month session. He is feeding well and is having no issues with the breast milk, nor is Karla having any issues with production. When he poos, the whole house knows it as do the neighbors, I think, as he makes the loudest sounds. His sleep patterns are generally very good but so far, four hours seems to be the maximum at on time.
We had a nice visit last weekend from my brother Jamie and his family. Isla was ecstatic at having her cousins around fro three days. Jamie took Isla and Amaralis whale watching on one day and they saw over 30 humpbacks, some breaching which was very exciting.
Because the Vermont Steering Committee meeting is this Thursday, June 26th, we moved my chemo session to yesterday. So far so good on the second chemo session of the second regimen.
Also, having fun watching the World Cup, Can't believe the US let in a goal in the 95th minute this past weekend, but I think sitting with a win and a tie after the first two games is better than expected. Big game against Germany on Thursday.
So bye from a good place. Will write a new blog soon.
Andrew
I'm at home on Day 2 of being infused with chemo on the Second chemo session of Regimen 2. So what happened over the past two weeks:
First off, the results of the third CT scan to see if tumors were the cause of my fatigue, or was it a virus, blood issue, etc. Basically, the doctors could not see anything that would be causing my issues aside from the chemo regimen itself. they had hoped to go at least one more session on the old regimen, especially as their had not been significant regrowth in my tumors. Remember that the goal of the chemo session is to shrink/reduce the tumors or at least slow regrowth. However, because of the serious issues I was feeling with fatigue and that I was starting to get more serious neuropathy with the first regiment, the decision was made to move on to the next chemo regimen.
I do want to stress that while there has been some regrowth in the tumors, I am nowhere near were I was in January. The tumors are still smaller and less dense, but as the third CT scan results showed, they were starting to make a comeback.
The second regiment would be like the first, still using the Antivastin, and still three days of the 5-FU infused slowly. The change would be to replace the Oxalyplatin with a new drug called Irinotecan. Its side effect are more moderate, mainly diarrhea during the three day infusion which can be managed quite effectively through Immodium. So no more increases in neuropathy (although it may take months for the effects of the Oxalyplatin to go away completely). Also, I may not experience the jaw pain that has plagues me on Day 2 of most of the first nine sessions.
So I got my infusion started, including a second blood transfusion because of low numbers in some of my blood levels. What is still frustrating is the sweats I get in conjunction with the chemo and the seem to last a long way into the night especially on Day 1. They are not painful in any way, but having to change you clothing constantly is somewhat unpleasant.
In any case the second regimen went fantastic and essentially was like the fifth or sixth regimen under the first chemo plan. The major fatigue, is gone, as is the jaw pain and I was able to put in some solid full day work for RSI. In a much better place which is great, as a lot of stuff has been going on.
Graeme is growing like gangbusters. He was well over 10 pounds at his one month session. He is feeding well and is having no issues with the breast milk, nor is Karla having any issues with production. When he poos, the whole house knows it as do the neighbors, I think, as he makes the loudest sounds. His sleep patterns are generally very good but so far, four hours seems to be the maximum at on time.
We had a nice visit last weekend from my brother Jamie and his family. Isla was ecstatic at having her cousins around fro three days. Jamie took Isla and Amaralis whale watching on one day and they saw over 30 humpbacks, some breaching which was very exciting.
Because the Vermont Steering Committee meeting is this Thursday, June 26th, we moved my chemo session to yesterday. So far so good on the second chemo session of the second regimen.
Also, having fun watching the World Cup, Can't believe the US let in a goal in the 95th minute this past weekend, but I think sitting with a win and a tie after the first two games is better than expected. Big game against Germany on Thursday.
So bye from a good place. Will write a new blog soon.
Andrew
Monday, June 23, 2014
Chemotherapy and the Cath-Port
June 24 - Note: I wrote most of this a month ago, but haven't posted until now. Gives a good explanation of the chemo cycles I go through:
Chemotherapy is the treatment of cancer through medicines or drugs that attack and kill the cancer cells. It is a systemic therapy (unlike radiation or surgery) in that the treatment goes throughout the entire body. Most chemotherapeutic drugs are taken as a liquid injection into a vein, while others are taken as a pill. The cool thing about what's available to me today (as opposed to 20 years ago) is what are called combination therapies. There are many different chemotherapy drugs and often, they are used to treat the cancer more aggressively. It also reduces the likelihood that the cancer would become resistant to any single chemo drug.
Taking it a step further are targeted chemotherapy regimens, which are designed to attack specific cell pathways used by cancers to survive and grow. These new treatments capitalize on advances in understanding cancer at the molecular level. By interfering with the pathways, cancer cells are unable to grow, and instead commit a type of "suicide", called apoptosis. Also, blood vessels that grow and feed cancer cells are halted, called antiangiogenesis.
I have Stage IV Metastatic Colorectal Cancer (mCRC for short). What the doctors have set up for me, based on my tumors is a three-pronged approach using the following drugs: Fluorouracil (5-FU) plus Leucovorin calcium, Oxaliplatin, and the antiangiogenic drug Bevacizumab (better known as Avastin). Together, they call my treatment mFOLFOX + Avastin.
The 5-FU and Leucovorin is the more traditional chemotherapy for mCRC. This has been around for 40 years and works by binding to an enzyme needed for making DNA. Cancer cells that no longer have this enzyme available are more likely to die when they try to divide in two. Normally 5-FU binds it for only a short time, which limits how effective 5-FU can be. Leucovorin causes this binding to last for a longer period of time, which boosts the effect of 5-FU.
Oxaliplatin is a platinum-compound chemotherapy drug that acts as an alkylating agent. It stops the growth of cancer cells, which causes the cells to die. It is now used in conjunction with 5-FU. While it has been around a while, it really has only been in full use since 2009.
Finally, Avastin which is an antibody drug that binds to and neutralizes a specific protein directly related to the mCRC. It was approved in 2006 to be used in combination with mFOLFOX therapy. This is a wonder drug that is blasting away at my tumors.
How do I get these drugs? While I am at the hospital on the Wednesday, I get the half hour blast of Avastin through an IV connected to an IV "tower" that if you are not directly familiar, appears on most TV medical dramas. I also get the Leucovorin and Oxaliplatin through similar IVs, that also are connected to an IV Tower. These take a bit longer, from an hour and a half to two hours. I can take them all simultaneously through my cath-port which is convenient. They supply me with 8mg of Dexamethasone, a steroid that as mentioned earlier, stimulates the adrenal gland so I am not a zombie through this process, but can actively function from my hospital chair. I usually do a training course through RSI at this time, to help me acquire the necessary credits to maintain my Project Management Professional (PMP) designation. Because I am doped up on the one hand, and being drained by chemo on the other, I try not to do any "heavy-lifting" work wise - no detailed analysis or major decision-making that could affect my work. Training makes a good alternative.
Once the three iVs are complete, I am then hooked up to the portable infuser through the same cath-port. This will be hooked up to me for the next 46 hours, and then disconnected by Nurse Karla at home on the Friday. It also tends to drain me and cause some side effects, so I continue to take the dexamethasone, albeit is smaller quantities, over the next six days to help manage the "downs" associated with the chemo. As I have mentioned in the blogs describing each session, we seem to be getting to a point where the management of the ups and downs is quite successful, for the most part.
What is a cath-port? It's a small device (about the size of two quarters placed side-by-side) that was surgically implanted under my skin in the right chest area to carry medicine into the bloodstream. It has two small 'basins' that are sealed with a soft silicon top (the septum). The port connects to a small, soft tube called a catheter. The catheter was surgically placed inside one of the large central veins that take blood to my heart (so no need to search for veins every two weeks). The chemotherapy drugs are infused into my bloodstream through a special needle that is placed into the septum every two weeks. Medicine and fluids are sent through the needle and blood samples can also be withdrawn.
After my chemo session is over, Karla is currently hooking me up to an IV bag of saline to help with my hydration post chemo. After the IV fluids are finished, Karla cleans the port by injecting heparin through the needle - this prevents blood clots from blocking the port (heparin thins the blood). Once that is complete, she removes the needle, and apart from a slight bump on my chest, you wouldn't know I had the port at all. It's pretty cool that this is available to me - I have heard horror stories of nurses searching for veins for some patients. This also provides us with the ability to manage treatments from home without having to return to the clinic multiple times.
June 24 - Additional note: I will discuss this more in my next chemo blog, but on June 11, we stopped the use of Oxalyplatin and replaced it with a new drug called Irinotecan. I was developing too may side effect with the Oxalyplatin and the CT scans and my reactions to the drug drove my doctors to decide to move on to the next chemo regiment that included the Irinotecan. I should see less side effects, and hopefully an improvement in the progress against my tumors.
Chemotherapy is the treatment of cancer through medicines or drugs that attack and kill the cancer cells. It is a systemic therapy (unlike radiation or surgery) in that the treatment goes throughout the entire body. Most chemotherapeutic drugs are taken as a liquid injection into a vein, while others are taken as a pill. The cool thing about what's available to me today (as opposed to 20 years ago) is what are called combination therapies. There are many different chemotherapy drugs and often, they are used to treat the cancer more aggressively. It also reduces the likelihood that the cancer would become resistant to any single chemo drug.
Taking it a step further are targeted chemotherapy regimens, which are designed to attack specific cell pathways used by cancers to survive and grow. These new treatments capitalize on advances in understanding cancer at the molecular level. By interfering with the pathways, cancer cells are unable to grow, and instead commit a type of "suicide", called apoptosis. Also, blood vessels that grow and feed cancer cells are halted, called antiangiogenesis.
I have Stage IV Metastatic Colorectal Cancer (mCRC for short). What the doctors have set up for me, based on my tumors is a three-pronged approach using the following drugs: Fluorouracil (5-FU) plus Leucovorin calcium, Oxaliplatin, and the antiangiogenic drug Bevacizumab (better known as Avastin). Together, they call my treatment mFOLFOX + Avastin.
The 5-FU and Leucovorin is the more traditional chemotherapy for mCRC. This has been around for 40 years and works by binding to an enzyme needed for making DNA. Cancer cells that no longer have this enzyme available are more likely to die when they try to divide in two. Normally 5-FU binds it for only a short time, which limits how effective 5-FU can be. Leucovorin causes this binding to last for a longer period of time, which boosts the effect of 5-FU.
Oxaliplatin is a platinum-compound chemotherapy drug that acts as an alkylating agent. It stops the growth of cancer cells, which causes the cells to die. It is now used in conjunction with 5-FU. While it has been around a while, it really has only been in full use since 2009.
Finally, Avastin which is an antibody drug that binds to and neutralizes a specific protein directly related to the mCRC. It was approved in 2006 to be used in combination with mFOLFOX therapy. This is a wonder drug that is blasting away at my tumors.
How do I get these drugs? While I am at the hospital on the Wednesday, I get the half hour blast of Avastin through an IV connected to an IV "tower" that if you are not directly familiar, appears on most TV medical dramas. I also get the Leucovorin and Oxaliplatin through similar IVs, that also are connected to an IV Tower. These take a bit longer, from an hour and a half to two hours. I can take them all simultaneously through my cath-port which is convenient. They supply me with 8mg of Dexamethasone, a steroid that as mentioned earlier, stimulates the adrenal gland so I am not a zombie through this process, but can actively function from my hospital chair. I usually do a training course through RSI at this time, to help me acquire the necessary credits to maintain my Project Management Professional (PMP) designation. Because I am doped up on the one hand, and being drained by chemo on the other, I try not to do any "heavy-lifting" work wise - no detailed analysis or major decision-making that could affect my work. Training makes a good alternative.
Once the three iVs are complete, I am then hooked up to the portable infuser through the same cath-port. This will be hooked up to me for the next 46 hours, and then disconnected by Nurse Karla at home on the Friday. It also tends to drain me and cause some side effects, so I continue to take the dexamethasone, albeit is smaller quantities, over the next six days to help manage the "downs" associated with the chemo. As I have mentioned in the blogs describing each session, we seem to be getting to a point where the management of the ups and downs is quite successful, for the most part.
What is a cath-port? It's a small device (about the size of two quarters placed side-by-side) that was surgically implanted under my skin in the right chest area to carry medicine into the bloodstream. It has two small 'basins' that are sealed with a soft silicon top (the septum). The port connects to a small, soft tube called a catheter. The catheter was surgically placed inside one of the large central veins that take blood to my heart (so no need to search for veins every two weeks). The chemotherapy drugs are infused into my bloodstream through a special needle that is placed into the septum every two weeks. Medicine and fluids are sent through the needle and blood samples can also be withdrawn.
After my chemo session is over, Karla is currently hooking me up to an IV bag of saline to help with my hydration post chemo. After the IV fluids are finished, Karla cleans the port by injecting heparin through the needle - this prevents blood clots from blocking the port (heparin thins the blood). Once that is complete, she removes the needle, and apart from a slight bump on my chest, you wouldn't know I had the port at all. It's pretty cool that this is available to me - I have heard horror stories of nurses searching for veins for some patients. This also provides us with the ability to manage treatments from home without having to return to the clinic multiple times.
June 24 - Additional note: I will discuss this more in my next chemo blog, but on June 11, we stopped the use of Oxalyplatin and replaced it with a new drug called Irinotecan. I was developing too may side effect with the Oxalyplatin and the CT scans and my reactions to the drug drove my doctors to decide to move on to the next chemo regiment that included the Irinotecan. I should see less side effects, and hopefully an improvement in the progress against my tumors.
Tuesday, June 10, 2014
Second CT Scan and Ninth Chemo
June 7, 2014
Normally, you would have already seen a blog update from me, as I tend to write them just before the next session, and per the schedule, I should now be in the middle of the tenth chemo session. However, we did not start the tenth session on Wednesday (June 4) as scheduled and it has been pushed to next week. I'll get into that in a bit, but there's a lot that's gone on in the past two and a half weeks since I last wrote.
First, the ninth chemo session started on Wednesday, May 21st. My Dad brought me into the clinic for this session, as Karla was home with baby Graeme. Like all sessions, before it started, we met with either my doctor or nurse practitioner (in this case it was Nina the NP) to discuss how the previous session went, whether changes were needed, etc. This discussion was more significant because we would also discuss the results of the CT scan I had undergone the previous week. Karla was dialed in through the cellphone. Unfortunately, the results were not as great as the first CT scan. There was some slight regrowth in the tumors (7%) which Nina indicated was actually a positive result, as this showed the chemo had maintained stability over the tumors since the previous session (anything under 20% is considered stable). I don't think Karla and I could quite bring ourselves to look on this as positive, but we do understand the situation I'm in - there is very little chance that the tumors in my body will be eradicated, so the point of the chemo sessions is to keep the tumors at bay, either shrinking them or at a minimum, holding them steady(and thus prolonging my life). So, this is not bad news, more 'meh' news.
There are numerous different chemo regimens that can be used against the cancer, and what we are pursuing is just the first of those regimens. There are many more in reserve, so to speak. This regimen was going to come to an end soon in any case, before one of the drugs (Oxalyplatin) did permanent damage to my nerves (the neuropathy side effect I have discussed in previous posts). I had actually been feeling the neuropathy more prevalently in recent weeks. So, Nina's recommendation was to scale back on the dosage of the Oxalyplatin for this session but to continue with the current regimen for this session. So I got hooked up to the different IVs, and then after completing the on site infusion, went home and completed the three day home infusion.
One thing we noticed as the days progressed is that the fatigue I had been experiencing seemed to be a lot worse. I was waking up unrefreshed, and by lunch time, was almost out of gas. An afternoon nap couldn't really bring back my energy, and I was going to bed immediately after dinner. This was becoming exceedingly frustrating for me, as it was getting harder to put in a full day of RSI work, let alone have anything left for my family.
A quick aside here - during this session, Karla's brother Chris and his family came up and paid us a visit from New Jersey. They stayed at a nearby hotel (they have five children so there was no way all of us could have stayed in our small house) and came over each day to visit. It was great to see them again, as Isla had never met her cousins on the DeGaetano side. It was definitely an experience for her, having to share her toys with others, and there were a few blow-ups! Chris and his wife Jill have done an amazing job raising the five kids, ranging in age from 2 to 11 years old. We all went and visited the newly opened Legoland in Boston. Probably more age appropriate for kids 7-14, but it was definitely an experience. Chris and Jill went back to Jersey on June 1.
Normally by this time, I'd be feeling really strong, but the fatigue has only gotten worse. My friend Ron was coming over for dinner on Tuesday, June 3, and I was hoping I'd have the energy for his visit. But Tuesday turned out to be a really weird day, side effect-wise. At 9:30, I took some Ibuprofen and started with some cold sweats early on. These subsided and by lunch time around 1PM, it was like a switch got turned on and I had some energy again, like a normal day before the next chemo session. I cranked out some RSI work over the next four and a half hour, but then got really cold and shivery and no amount of blankets could cool me down. So Ron's visit consisted of me being under blankets the whole time having shivery conversations.
June 10
I picked up the blog a few days later, as I was quite fatigued over the next few days and a number of things happened. I went in the for the 10th chemo session on June 4, but unfortunately had a bit of a fever approaching 101% degrees, so no chemo this week, The doctor felt it would be better to wait a week and in the meantime, see if the could isolate my fatigue. So we spent the rest of Wednesday getting blood cultures, loading up on IV fluid and being rescheduled to next Wednesday for the 10th session.
Unfortunately, when we got back home, my fever went up again. Karla called Dr. Wolpin and he recommended going to the hospital. So we loaded back up into the car and drove downtown to the Brigham. I would be on my own here, as Karla and I did not want to bring Graeme into the emergency room. Luckily, Dr. Wolpin had called ahead and I was seen very quickly. I hate the Emergency room as it is like a petri dish of injuries, disease, illness, etc. and I just tried to keep myself separated as much as possible. I had a private room quite quickly.
They took more tests, blood and vitals, and my fever had come down. I also had a chest x-ray to make sure I did not have pneumonia. All tests were negative but they decided to keep me over night just in case. Probably one of the worst sleeps since baby was born, constant noise, and being woken up every few hours for vitals or bathroom break. Overnight, Jamie decided to come down from Ottawa for a few days to provide support which was welcomed, especially if I needed to go back to hospital. I was cleared to leave around ten, but traffic was so bad that Karla wasn't able to get me until around noon. Finally home, quite fatigues in early afternoon so went straight to bed. Jamie made it down, and provided major support over the next few days.
My fever did go up a bit over the next few days, but after consultation, with NP Nina, we decided to stay home over weekend and then come in on Monday for next attempt at chemo. Unfortunely, still had a fever so pushed off chemo until Wednesday the 11th. Instead we did another CT scan to see if tumors were the cause of my fatigue. So spend most of the day at the clinic and drove home for dinner. Still feeling fatigue on Tuesday, but drove in Wednesday for next chemo.
I'll describe things further in my next blog, as we actually did move forward with the next chemo on the Wednesday.
Talk soon.
Andrew
Normally, you would have already seen a blog update from me, as I tend to write them just before the next session, and per the schedule, I should now be in the middle of the tenth chemo session. However, we did not start the tenth session on Wednesday (June 4) as scheduled and it has been pushed to next week. I'll get into that in a bit, but there's a lot that's gone on in the past two and a half weeks since I last wrote.
First, the ninth chemo session started on Wednesday, May 21st. My Dad brought me into the clinic for this session, as Karla was home with baby Graeme. Like all sessions, before it started, we met with either my doctor or nurse practitioner (in this case it was Nina the NP) to discuss how the previous session went, whether changes were needed, etc. This discussion was more significant because we would also discuss the results of the CT scan I had undergone the previous week. Karla was dialed in through the cellphone. Unfortunately, the results were not as great as the first CT scan. There was some slight regrowth in the tumors (7%) which Nina indicated was actually a positive result, as this showed the chemo had maintained stability over the tumors since the previous session (anything under 20% is considered stable). I don't think Karla and I could quite bring ourselves to look on this as positive, but we do understand the situation I'm in - there is very little chance that the tumors in my body will be eradicated, so the point of the chemo sessions is to keep the tumors at bay, either shrinking them or at a minimum, holding them steady(and thus prolonging my life). So, this is not bad news, more 'meh' news.
There are numerous different chemo regimens that can be used against the cancer, and what we are pursuing is just the first of those regimens. There are many more in reserve, so to speak. This regimen was going to come to an end soon in any case, before one of the drugs (Oxalyplatin) did permanent damage to my nerves (the neuropathy side effect I have discussed in previous posts). I had actually been feeling the neuropathy more prevalently in recent weeks. So, Nina's recommendation was to scale back on the dosage of the Oxalyplatin for this session but to continue with the current regimen for this session. So I got hooked up to the different IVs, and then after completing the on site infusion, went home and completed the three day home infusion.
One thing we noticed as the days progressed is that the fatigue I had been experiencing seemed to be a lot worse. I was waking up unrefreshed, and by lunch time, was almost out of gas. An afternoon nap couldn't really bring back my energy, and I was going to bed immediately after dinner. This was becoming exceedingly frustrating for me, as it was getting harder to put in a full day of RSI work, let alone have anything left for my family.
A quick aside here - during this session, Karla's brother Chris and his family came up and paid us a visit from New Jersey. They stayed at a nearby hotel (they have five children so there was no way all of us could have stayed in our small house) and came over each day to visit. It was great to see them again, as Isla had never met her cousins on the DeGaetano side. It was definitely an experience for her, having to share her toys with others, and there were a few blow-ups! Chris and his wife Jill have done an amazing job raising the five kids, ranging in age from 2 to 11 years old. We all went and visited the newly opened Legoland in Boston. Probably more age appropriate for kids 7-14, but it was definitely an experience. Chris and Jill went back to Jersey on June 1.
Normally by this time, I'd be feeling really strong, but the fatigue has only gotten worse. My friend Ron was coming over for dinner on Tuesday, June 3, and I was hoping I'd have the energy for his visit. But Tuesday turned out to be a really weird day, side effect-wise. At 9:30, I took some Ibuprofen and started with some cold sweats early on. These subsided and by lunch time around 1PM, it was like a switch got turned on and I had some energy again, like a normal day before the next chemo session. I cranked out some RSI work over the next four and a half hour, but then got really cold and shivery and no amount of blankets could cool me down. So Ron's visit consisted of me being under blankets the whole time having shivery conversations.
June 10
I picked up the blog a few days later, as I was quite fatigued over the next few days and a number of things happened. I went in the for the 10th chemo session on June 4, but unfortunately had a bit of a fever approaching 101% degrees, so no chemo this week, The doctor felt it would be better to wait a week and in the meantime, see if the could isolate my fatigue. So we spent the rest of Wednesday getting blood cultures, loading up on IV fluid and being rescheduled to next Wednesday for the 10th session.
Unfortunately, when we got back home, my fever went up again. Karla called Dr. Wolpin and he recommended going to the hospital. So we loaded back up into the car and drove downtown to the Brigham. I would be on my own here, as Karla and I did not want to bring Graeme into the emergency room. Luckily, Dr. Wolpin had called ahead and I was seen very quickly. I hate the Emergency room as it is like a petri dish of injuries, disease, illness, etc. and I just tried to keep myself separated as much as possible. I had a private room quite quickly.
They took more tests, blood and vitals, and my fever had come down. I also had a chest x-ray to make sure I did not have pneumonia. All tests were negative but they decided to keep me over night just in case. Probably one of the worst sleeps since baby was born, constant noise, and being woken up every few hours for vitals or bathroom break. Overnight, Jamie decided to come down from Ottawa for a few days to provide support which was welcomed, especially if I needed to go back to hospital. I was cleared to leave around ten, but traffic was so bad that Karla wasn't able to get me until around noon. Finally home, quite fatigues in early afternoon so went straight to bed. Jamie made it down, and provided major support over the next few days.
My fever did go up a bit over the next few days, but after consultation, with NP Nina, we decided to stay home over weekend and then come in on Monday for next attempt at chemo. Unfortunely, still had a fever so pushed off chemo until Wednesday the 11th. Instead we did another CT scan to see if tumors were the cause of my fatigue. So spend most of the day at the clinic and drove home for dinner. Still feeling fatigue on Tuesday, but drove in Wednesday for next chemo.
I'll describe things further in my next blog, as we actually did move forward with the next chemo on the Wednesday.
Talk soon.
Andrew
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