Hey everyone
It's Tuesday the 29th of April, one day before I go in for my next session so I thought I'd give you all an update on the previous session as well as events going on around the Cuthill household.
First off, it's less than two weeks before Baby G arrives. He has been making his presence known by plenty of rapid-fire kicking in Karla's belly - I think the boy will take after his Dad and be a soccer player!! Karla goes in for weekly checkups at this point and everything is good. We did have a bit of a scare last week when she went in for an ultrasound and they sent her for additional tests - we suddenly realized how unprepared we were if the baby came early. So a bag is now packed and ready to take to the hospital, the co-sleeper is set up beside the bed, and all baby clothes are washed and sorted. I'm ready as I'll ever be (which means I'm hopelessly unprepared). But I felt the same way with Isla and she turned out OK, right?
We have also done some house hunting in recent weeks and have attended a number of open houses in the south west area of Greater Boston. While we like Reading, where we currently live, you can just get so much more house for your money further south, and without scrimping on good schools. Nothing has jumped out yet, but we have a pretty good idea what we need (and want) in a home.
Karla and I attended another conference at the Dana-Farber clinic. This one was more medical in nature, and despite feeling a bit under the weather on the day of the event, I am glad I attended this event. It was much more hands on than the previous conference, giving very specific direction on things like diet, services available at the clinic including health and fitness, and explaining what current trends were out there in the medical community. There was also an inspiring talk from a man named Jim who has been fighting Stage IV colon cancer like myself for two years now. While he is not completely cured, he has had very positive results from both surgery and chemo, and looked really healthy. While his talk brought the obvious tears as he talked about discussing his cancer for the first time with his children, I did not take negative thoughts from the speech and instead found it inspiring to see someone a few years ahead of me in the "process" and handling it well.
As for my chemotherapy, this was a tougher two weeks. Each session has been a bit better than the last until this session. I caught a cold and it really hit me hard last week. The fatigue side effects were "enhanced" by the cold, making me more tired and lethargic than normal. I could fit in 6-8 hours of work each day, but then essentially had to go to bed and sleep after that. It was quite frustrating as I felt I was ready to move forward with getting fit again. I seem to have come out of the cold and am feeling quite good today, but tomorrow's session will knock me back down again. What I have done is scheduled a health and fitness appointment with the clinic next Monday. Hopefully, I will get some idea of how to proceed without overly stressing my body.
One other quick story. I had taken off my wedding ring a few months ago, as my weight loss from surgery and initial chemo had impacted the size of my ring finger. Rather than lose a second wedding ring, I put the ring away. A few weeks ago, I thought I had recovered enough to wear the ring again but unfortunately it came flying off while I was washing my hair. I can't risk losing another so the ring will go away again. I guess I have to build up muscle strength in my fingers too (or maybe I was just a bit fat before). For those of you who attended my wedding, you may remember that I lost my first wedding ring snorkeling in the waters off the hotel beach the DAY AFTER I got married. Not my most shining moment!
Thanks for reading.
Andrew
Tuesday, April 29, 2014
Tuesday, April 15, 2014
Sixth Chemo
Tuesday, April 15
So this is the first time I'm actually writing on the blog real-time. Rather than send out multiple emails, and because the donation website is wrapping up today, I have tried to get everything in one place.
So what has happened over the past two weeks, as it is now Day 14 of my sixth chemo session? A lot. Perhaps the most significant thing is that our au pair, Amarilis, arrived in Boston last Thursday, April 10, and has integrated extremely well with our family. She flew in from Panama on Monday, April 7 and had three intense days of orientation in New York with other au pairs, through the Au Pair in America organization. On Thursday, she hopped on a train from New York to Boston and was met by the three of us at South Station at 8PM. Isla was somewhat shy at first but over the last few days, she has really taken to her. It may be hard to believe, but as a three-year-old, I think she gets it that Amarilis is primarily here for her. And she has not hesitated to take advantage of that: "Amarilis, come play with me", "Amaralis, come sit with me", etc. Her English needs a lot of work but that's part of why she's here in the US. She has already helped out tremendously, and that's in the first 5 days. I think we will be in good shape when Baby G is born.
Baby G - it's only four weeks away now, actually one day less than 4 weeks. I don't think you can fully prepare for the birth of a child. It just happens and you adapt. Don't get me wrong, you do all the right things like buying the changing table, clothes, toys, bouncer, swing etc. so materially you are prepared. It's more mental. While we now have the benefit of knowing what to expect based on our first child, we have no idea what dynamic the second child will bring. Friends tell you this and that but in reality, you learn as you go. Personally, I'm looking forward to having a little guy walking around. I haven't had this experience since I was two years old and my brother Jamie turned up, pretty much quoting lines from local comedians as soon as he came out of the womb.
Baby G is making it tough on Karla. A good night's sleep is hard to come by for her, what with him resting on her bladder or shooting an elbow or knee into some uncomfortable spot without warning. He's bigger than Isla was at this stage, although we think both of them were equally as active. Karla sees a doctor pretty much every week now, just to make sure all is OK as we head into the homestretch. Everything is fine and normal.
I celebrated my 48th birthday on April 7th. My parents were in town and so Karla and I got a night out to celebrate. As it was only Day 6 after the chemo, we weren't sure how I'd react, but everything worked out great. We had a nice dinner at a sushi restaurant in Brookline downtown and then went to the Shubert Theatre to see my favorite artist, Neil Finn, in concert. It was a great show as he played songs from all parts of his musical career, including a bunch of Split Enz classics from the 70's and 80's, many Crowded House songs from the 80's and 90's, mixed in with some solo songs he'd released over the years. For those of you who don't know him, look up "Don't Dream It's Over" or "I Got You" on the internet and you may recall him. I did not get too tired and overall, felt quite good after my first long night out (till 11PM - that counts as a long night, right?) since I got sick.
Overall, the sixth chemo session has gone quite well. In terms of side effects, I did experience some jaw pain on Day 2, but not for as long, and I seemed to come off the steroid on Day 8 without experiencing the major lethargy of previous sessions. I still have constant sore throat, morning nosebleeds, occasional blurred vision and tingling in my fingers and toes. Strangely, even though I am still about 15 pounds under my weight in December, I feel like I actually look a bit chubbier in the face. I am still eating well, and with the weather turning, I'm starting to do some walking again, but all of my weight gain is probably around the belly rather than muscle. This will be a topic of discussion with Dr. Wolpin tomorrow - I do want to start pushing myself harder, within reason and I am hoping he can help.
I dread tomorrow. You spend two weeks getting yourself back to some place normal, when you know that you are going to get knocked down over the next three days. When I'm walking around with the infuser pumping chemicals into me, I feel slightly less than human. But I haven't lost sight of the target: Knock the cancer backwards to a point where it no longer is growing. Two more sessions and they will do another CT scan - I do feel like we are continuing to progress.
All the best.
So this is the first time I'm actually writing on the blog real-time. Rather than send out multiple emails, and because the donation website is wrapping up today, I have tried to get everything in one place.
So what has happened over the past two weeks, as it is now Day 14 of my sixth chemo session? A lot. Perhaps the most significant thing is that our au pair, Amarilis, arrived in Boston last Thursday, April 10, and has integrated extremely well with our family. She flew in from Panama on Monday, April 7 and had three intense days of orientation in New York with other au pairs, through the Au Pair in America organization. On Thursday, she hopped on a train from New York to Boston and was met by the three of us at South Station at 8PM. Isla was somewhat shy at first but over the last few days, she has really taken to her. It may be hard to believe, but as a three-year-old, I think she gets it that Amarilis is primarily here for her. And she has not hesitated to take advantage of that: "Amarilis, come play with me", "Amaralis, come sit with me", etc. Her English needs a lot of work but that's part of why she's here in the US. She has already helped out tremendously, and that's in the first 5 days. I think we will be in good shape when Baby G is born.
Baby G - it's only four weeks away now, actually one day less than 4 weeks. I don't think you can fully prepare for the birth of a child. It just happens and you adapt. Don't get me wrong, you do all the right things like buying the changing table, clothes, toys, bouncer, swing etc. so materially you are prepared. It's more mental. While we now have the benefit of knowing what to expect based on our first child, we have no idea what dynamic the second child will bring. Friends tell you this and that but in reality, you learn as you go. Personally, I'm looking forward to having a little guy walking around. I haven't had this experience since I was two years old and my brother Jamie turned up, pretty much quoting lines from local comedians as soon as he came out of the womb.
Baby G is making it tough on Karla. A good night's sleep is hard to come by for her, what with him resting on her bladder or shooting an elbow or knee into some uncomfortable spot without warning. He's bigger than Isla was at this stage, although we think both of them were equally as active. Karla sees a doctor pretty much every week now, just to make sure all is OK as we head into the homestretch. Everything is fine and normal.
I celebrated my 48th birthday on April 7th. My parents were in town and so Karla and I got a night out to celebrate. As it was only Day 6 after the chemo, we weren't sure how I'd react, but everything worked out great. We had a nice dinner at a sushi restaurant in Brookline downtown and then went to the Shubert Theatre to see my favorite artist, Neil Finn, in concert. It was a great show as he played songs from all parts of his musical career, including a bunch of Split Enz classics from the 70's and 80's, many Crowded House songs from the 80's and 90's, mixed in with some solo songs he'd released over the years. For those of you who don't know him, look up "Don't Dream It's Over" or "I Got You" on the internet and you may recall him. I did not get too tired and overall, felt quite good after my first long night out (till 11PM - that counts as a long night, right?) since I got sick.
Overall, the sixth chemo session has gone quite well. In terms of side effects, I did experience some jaw pain on Day 2, but not for as long, and I seemed to come off the steroid on Day 8 without experiencing the major lethargy of previous sessions. I still have constant sore throat, morning nosebleeds, occasional blurred vision and tingling in my fingers and toes. Strangely, even though I am still about 15 pounds under my weight in December, I feel like I actually look a bit chubbier in the face. I am still eating well, and with the weather turning, I'm starting to do some walking again, but all of my weight gain is probably around the belly rather than muscle. This will be a topic of discussion with Dr. Wolpin tomorrow - I do want to start pushing myself harder, within reason and I am hoping he can help.
I dread tomorrow. You spend two weeks getting yourself back to some place normal, when you know that you are going to get knocked down over the next three days. When I'm walking around with the infuser pumping chemicals into me, I feel slightly less than human. But I haven't lost sight of the target: Knock the cancer backwards to a point where it no longer is growing. Two more sessions and they will do another CT scan - I do feel like we are continuing to progress.
All the best.
Sunday, April 13, 2014
Fifth Chemo
Originally sent in an email on March 31, 2014:
Hi everyone
Just wanted to give you some updates as I head into my sixth session this Wednesday. No major issues for me through Days 5-12 except for some weird leg pain and lethargy as I came off the steroid. So it seems that, at least for now, we have some form of normalcy in how the sessions progress. This could change at any time, but hopefully, nothing too severe. I have sessions scheduled this week, on April 2, as well as on April 16 and April 30, and then I will take a three week break so I can be as active as possible when Baby G arrives on May 12.
Our au pair, Amarilis from Panama, arrives on Thursday, the 10th, so we have been preparing for her arrival. On some levels, I feel somewhat unprepared - we have this 25 year old woman who is going to live with us for the next year, who we have never met in person, who speaks some English but needs work, and who will be driving our cars (at some point) and taking care of Isla. But we sooo need the help - Karla is definitely slowing down as she is well into her 8th month and I just don't have the energy to take on too many additional responsibilities.
I did want to share some thoughts from the past weekend too. As part of the chemo process, we get regular visits at the clinic from a social worker and a nutritionist. The social worker had been pushing Karla and I to attend a conference on Saturday for young adults with cancer. I can hear some of you snorting (Casey, probably) at the thought that I am classified as a "young adult" but I think it is more a reflection of where Karla and I are in our lives, with a young family. And I am truly a young adult when it comes to colon cancer, judging by the people I see at the clinic every second week. In any case, we attended the conference and to be honest, I have to say that it punched me in the gut to some extent. I think I have approached this whole cancer thing with an optimistic attitude that it's something I will overcome and that there is no doubt we will get through this. I will admit that I am wearing rose-colored glasses to some extent, but why dwell on the negatives? In any case, rather than inspiring me, the conference made me to think about mortality, about how isolated we have become, and exactly what the future may hold for me. We met other cancer patients who had seen recurrences of their cancer, and one woman who was seriously considering giving up on treatments. While their situations are different than mine, it was tough to hear what they went through and impossible not to put myself in their position as I listened to their struggles. I was hoping that the conference would provide me with some insight into my disease, maybe some ideas on managing side effects, and some other therapies or homeopathic remedies that people have discovered. Instead, I left with a feeling of melancholy - maybe a dose of reality is good in some cases, but ignorance can be bliss too.
On the flip side, on Saturday night, Karla, Isla and I ventured out for the first evening since I got sick to see the Harlem Globetrotters at TD Garden. Karla has a friend of a friend who does PR for the 'Trotters and got us court side seats to see the game/performance. Isla was amazing with all the crowds, and we got to watch the fun from very close. The 'Trotters have a mascot named Globie, essentially a guy dressed up with a huge smiling face globe for a head. Isla was terrified! Every time Globie came close (which, court side was somewhat often) she would scream and bury her head into Karla. We were finally able to convince her that he was a friend, and I think after she watched him dance a few times, she started to think the same. We lasted only one period, as Isla was starting to really pass out, but it was really great to get out as a family and experience some "normalcy".
My parents just arrived from Canada so I'll sign off. They will be helping this week especially on Wednesday through Friday as I do the chemo.
Andrew
Hi everyone
Just wanted to give you some updates as I head into my sixth session this Wednesday. No major issues for me through Days 5-12 except for some weird leg pain and lethargy as I came off the steroid. So it seems that, at least for now, we have some form of normalcy in how the sessions progress. This could change at any time, but hopefully, nothing too severe. I have sessions scheduled this week, on April 2, as well as on April 16 and April 30, and then I will take a three week break so I can be as active as possible when Baby G arrives on May 12.
Our au pair, Amarilis from Panama, arrives on Thursday, the 10th, so we have been preparing for her arrival. On some levels, I feel somewhat unprepared - we have this 25 year old woman who is going to live with us for the next year, who we have never met in person, who speaks some English but needs work, and who will be driving our cars (at some point) and taking care of Isla. But we sooo need the help - Karla is definitely slowing down as she is well into her 8th month and I just don't have the energy to take on too many additional responsibilities.
I did want to share some thoughts from the past weekend too. As part of the chemo process, we get regular visits at the clinic from a social worker and a nutritionist. The social worker had been pushing Karla and I to attend a conference on Saturday for young adults with cancer. I can hear some of you snorting (Casey, probably) at the thought that I am classified as a "young adult" but I think it is more a reflection of where Karla and I are in our lives, with a young family. And I am truly a young adult when it comes to colon cancer, judging by the people I see at the clinic every second week. In any case, we attended the conference and to be honest, I have to say that it punched me in the gut to some extent. I think I have approached this whole cancer thing with an optimistic attitude that it's something I will overcome and that there is no doubt we will get through this. I will admit that I am wearing rose-colored glasses to some extent, but why dwell on the negatives? In any case, rather than inspiring me, the conference made me to think about mortality, about how isolated we have become, and exactly what the future may hold for me. We met other cancer patients who had seen recurrences of their cancer, and one woman who was seriously considering giving up on treatments. While their situations are different than mine, it was tough to hear what they went through and impossible not to put myself in their position as I listened to their struggles. I was hoping that the conference would provide me with some insight into my disease, maybe some ideas on managing side effects, and some other therapies or homeopathic remedies that people have discovered. Instead, I left with a feeling of melancholy - maybe a dose of reality is good in some cases, but ignorance can be bliss too.
On the flip side, on Saturday night, Karla, Isla and I ventured out for the first evening since I got sick to see the Harlem Globetrotters at TD Garden. Karla has a friend of a friend who does PR for the 'Trotters and got us court side seats to see the game/performance. Isla was amazing with all the crowds, and we got to watch the fun from very close. The 'Trotters have a mascot named Globie, essentially a guy dressed up with a huge smiling face globe for a head. Isla was terrified! Every time Globie came close (which, court side was somewhat often) she would scream and bury her head into Karla. We were finally able to convince her that he was a friend, and I think after she watched him dance a few times, she started to think the same. We lasted only one period, as Isla was starting to really pass out, but it was really great to get out as a family and experience some "normalcy".
My parents just arrived from Canada so I'll sign off. They will be helping this week especially on Wednesday through Friday as I do the chemo.
Andrew
First CT Scan Results - Good News
Originally sent in an email on March 22, 2014
Hey
So we received really good news from the first CT scan results. The tumors in my liver and lung are both less dense and smaller. This means that, so far, the chemo is working! Now it's early, so we are not jumping through hoops yet, but this really great news and confirms what I have been feeling inside. Honestly, I went into the meeting with the oncologist without feeling nervous at all. It was actually a funny session, as we immediately jumped into discussing issues with the fourth session and how we could mitigate them in the fifth session. Just the fact that we were talking a fifth session meant the CT results had to have been positive, but Dr. Wolpin did not come right out and say it. So I brought it up as sort of the..."so, I take it with these discussions that we had a good CT scan...?" He looked a bit embarrassed, and said yes quite good. We had a few laughs and he walked us through what we described above. Karla and I hugged and had some tears in our eyes (tears of happiness for a change). So the plan is continue onwards - no change to the chemo schedule. It's working so let's hope it continues to work.
There was a small caveat. I have been getting this really bad jaw and upper body pain, generally on the second day. Dr. Wolpin wanted to fully eliminate heart issues from the equation. Apparently, this pain manifests itself in two ways based on two of the different drugs I am taking. In one case, it's just a side effect that has to be managed (through Tylenol), but in the more rarer cases, it may be a strain on the heart, and the chemo regimen may have to be changed. So we were scheduled to come back in the next day for an EKG on my heart (just a bunch of wires attached to the body) to make sure it wasn't the latter. Unfortunately,the pain did not really hit me until late in the day so we did not get in until Day 3. But the results came back negative - regular heartbeat. I finished the chemo session around 2:30 yesterday and Karla hooked me up to some fluids. We detached everything around 6PM and now we go through the regular two week routine before the next session. I was a bit more lethargic over the past two days as we dialed back on the steroid.
Karla's folks have been helpful this week, and will be heading back to Myrtle Beach later today. This morning, Karla and I will be visiting a realtor in the area to start the process of looking for a new home this summer (I won't be in temporary housing forever). We are also getting closer to the au pair's arrival in April and hope to Skype with her this weekend to see how things are going.
Very happy to pass on good news. All the best.
Andrew
Hey
So we received really good news from the first CT scan results. The tumors in my liver and lung are both less dense and smaller. This means that, so far, the chemo is working! Now it's early, so we are not jumping through hoops yet, but this really great news and confirms what I have been feeling inside. Honestly, I went into the meeting with the oncologist without feeling nervous at all. It was actually a funny session, as we immediately jumped into discussing issues with the fourth session and how we could mitigate them in the fifth session. Just the fact that we were talking a fifth session meant the CT results had to have been positive, but Dr. Wolpin did not come right out and say it. So I brought it up as sort of the..."so, I take it with these discussions that we had a good CT scan...?" He looked a bit embarrassed, and said yes quite good. We had a few laughs and he walked us through what we described above. Karla and I hugged and had some tears in our eyes (tears of happiness for a change). So the plan is continue onwards - no change to the chemo schedule. It's working so let's hope it continues to work.
There was a small caveat. I have been getting this really bad jaw and upper body pain, generally on the second day. Dr. Wolpin wanted to fully eliminate heart issues from the equation. Apparently, this pain manifests itself in two ways based on two of the different drugs I am taking. In one case, it's just a side effect that has to be managed (through Tylenol), but in the more rarer cases, it may be a strain on the heart, and the chemo regimen may have to be changed. So we were scheduled to come back in the next day for an EKG on my heart (just a bunch of wires attached to the body) to make sure it wasn't the latter. Unfortunately,the pain did not really hit me until late in the day so we did not get in until Day 3. But the results came back negative - regular heartbeat. I finished the chemo session around 2:30 yesterday and Karla hooked me up to some fluids. We detached everything around 6PM and now we go through the regular two week routine before the next session. I was a bit more lethargic over the past two days as we dialed back on the steroid.
Karla's folks have been helpful this week, and will be heading back to Myrtle Beach later today. This morning, Karla and I will be visiting a realtor in the area to start the process of looking for a new home this summer (I won't be in temporary housing forever). We are also getting closer to the au pair's arrival in April and hope to Skype with her this weekend to see how things are going.
Very happy to pass on good news. All the best.
Andrew
Fourth Chemo
Originally sent in an email on March 18, 2014:
Hi everyone
I head into chemo tomorrow, so I thought I'd give everyone an update on the past session. Once again, it was definitely better this time around than the third session. My parents came down from Ottawa to help out over the chemo week. They are just so good with Isla - giving her arts and crafts to do, playing with her and building elaborate Duplo structures, and taking her on long walks outside.
We had a really good meeting with the oncologist and basically we did not change much from the previous session, other than to reduce the steroid I was taking. The steroid is used to help manage the pain and essentially produces a hormone similar to what is produced by your adrenal glands. We had a really good nurse, Heather, who administered the chemo at the clinic, and had everything working like clockwork, so we were home much faster than other weeks.
I had the same reaction to the chemo on Day 2, with very severe jaw and upper body pain that I managed for the most part with Tylenol and Ibuprofen. In terms of overall side effects, I have not suffered some of the more severe ones that other cancer patients have faced as yet. I still have my hair (well, what's left of my hair as a 47-year old!!), I still enjoy food and my taste buds have not been impacted, I have not experienced sores inside my mouth (thank Christine Doherty for that - spoonful of honey in the morning and evening) and while I have experienced some slight numbness at times in my toes and fingertips, it has not been severe and has actually been less noticeable after the fourth session. I am extremely averse to the cold however - my hands start stinging and going numb almost immediately if I go out in sub-freezing temperatures. I also can't drink anything cold, and especially any iced drinks as it almost burns my throat. And of course, I get tired very easily.
Karla hooked me up to an IV of saline on Day 3, and we also did it on Day 5, but I am finding that it really is unnecessary after Day 3 - I am getting very good at drinking 2 full litres of Smart Water each day, and the drip really just messes up that process. We will continue to do an IV on Day 3 going forward, though, as the chemo does seem to drain me more.
Was able to do more on Day 4 through Day 7 but experienced the same power drain when going off the steroid and was wiped out for much of Day 8. We'll talk to the oncologist about that and see what we can do. I have been fighting a sore throat for much of the second week but I think it's pretty much due to the excessive dryness in our house.
I did go in for a CT scan on Friday (Day 9). They lay you flat on a table and pass you through this giant ring (I can see Bruce referring to it as a Stargate) several times. You drink a special barium solution over several hours prior to the scan that helps with the computer "tomography" of the gastrointestinal tract (I think that means things show up clearer on the scan). In any case, it proceeded without incident. Note that this is very different from an MRI (which I've also had) where you essentially are slid into this massive machine, and feelings of claustrophobia are very common. We won't know the results until we see the oncologist at tomorrow's session. I may be slow in sharing the results, either way, as I think Karla and I will take the time to process whatever is discussed. I feel the chemo is working, so the hope is that we can continue full steam ahead if the results are positive.
Karla and Isla are both well. Baby G (as we refer to the wee one) is getting more and more active and is apparently the size of a pineapple now. Karla is having to dial back on things a bit, even though she wants to take on a lot. The au pair starts in three weeks and we need to start preparing for the additional resident in the house. We also had a nice visit from my brother and his family last weekend - it is so amazing to see Isla and her cousins interact.
So, think good thoughts and all the best to everyone.
Andrew
Hi everyone
I head into chemo tomorrow, so I thought I'd give everyone an update on the past session. Once again, it was definitely better this time around than the third session. My parents came down from Ottawa to help out over the chemo week. They are just so good with Isla - giving her arts and crafts to do, playing with her and building elaborate Duplo structures, and taking her on long walks outside.
We had a really good meeting with the oncologist and basically we did not change much from the previous session, other than to reduce the steroid I was taking. The steroid is used to help manage the pain and essentially produces a hormone similar to what is produced by your adrenal glands. We had a really good nurse, Heather, who administered the chemo at the clinic, and had everything working like clockwork, so we were home much faster than other weeks.
I had the same reaction to the chemo on Day 2, with very severe jaw and upper body pain that I managed for the most part with Tylenol and Ibuprofen. In terms of overall side effects, I have not suffered some of the more severe ones that other cancer patients have faced as yet. I still have my hair (well, what's left of my hair as a 47-year old!!), I still enjoy food and my taste buds have not been impacted, I have not experienced sores inside my mouth (thank Christine Doherty for that - spoonful of honey in the morning and evening) and while I have experienced some slight numbness at times in my toes and fingertips, it has not been severe and has actually been less noticeable after the fourth session. I am extremely averse to the cold however - my hands start stinging and going numb almost immediately if I go out in sub-freezing temperatures. I also can't drink anything cold, and especially any iced drinks as it almost burns my throat. And of course, I get tired very easily.
Karla hooked me up to an IV of saline on Day 3, and we also did it on Day 5, but I am finding that it really is unnecessary after Day 3 - I am getting very good at drinking 2 full litres of Smart Water each day, and the drip really just messes up that process. We will continue to do an IV on Day 3 going forward, though, as the chemo does seem to drain me more.
Was able to do more on Day 4 through Day 7 but experienced the same power drain when going off the steroid and was wiped out for much of Day 8. We'll talk to the oncologist about that and see what we can do. I have been fighting a sore throat for much of the second week but I think it's pretty much due to the excessive dryness in our house.
I did go in for a CT scan on Friday (Day 9). They lay you flat on a table and pass you through this giant ring (I can see Bruce referring to it as a Stargate) several times. You drink a special barium solution over several hours prior to the scan that helps with the computer "tomography" of the gastrointestinal tract (I think that means things show up clearer on the scan). In any case, it proceeded without incident. Note that this is very different from an MRI (which I've also had) where you essentially are slid into this massive machine, and feelings of claustrophobia are very common. We won't know the results until we see the oncologist at tomorrow's session. I may be slow in sharing the results, either way, as I think Karla and I will take the time to process whatever is discussed. I feel the chemo is working, so the hope is that we can continue full steam ahead if the results are positive.
Karla and Isla are both well. Baby G (as we refer to the wee one) is getting more and more active and is apparently the size of a pineapple now. Karla is having to dial back on things a bit, even though she wants to take on a lot. The au pair starts in three weeks and we need to start preparing for the additional resident in the house. We also had a nice visit from my brother and his family last weekend - it is so amazing to see Isla and her cousins interact.
So, think good thoughts and all the best to everyone.
Andrew
Third Chemo
Originally sent in an email on March 4, 2014
Hello from the endless winter of the Northeast
I am heading in for my fourth chemo session tomorrow and if it goes as well as the third session, I'll be a very happy man.
On the day of the third chemo session, February 19, we had our old babysitter from Vermont, Abby, in place to take care of Isla (she now lives south of Boston in New Bedford). Meanwhile, my friend Scott was driving up from Jersey, arriving in the evening, and would stay six days to support us in case any issues arose. Don't know if we were more excited to see Scott himself, or to have some of his cooking while he was here. Thanks to Pam and Jack for making him available, and Scott for being...Scott.
No major issues at the clinic, except that the Canada game against Latvia, being played while I was getting infused, was not available on the hospital TV, much to my chagrin. I was able to see the last few minutes streamed on my computer after setting up a portable wi-fi. So Karla and I came home with me hooked up to the portable infuser and we had a great dinner with Scott and Abby (who stayed around a bit longer because Isla was initially not too sure about that strange man with a goatee).
Day 2 and Day 3 went relatively smoothly. I did get some quite intense lower jaw pain that I was able to manage for the most part with tylenol and ibuprofen. Unfortunately, the pain struck just as the Canadian women were mounting that incredible comeback against the US in the gold medal game. I actually had to bury my head as I waited for the ibuprofen to take effect, but the true friend that Scott is, he gave me the play-by-play and his voice held such excitement (sarcasm intended) when Canada scored the winner.
We also had a visit from a second infusion company. As I had issues with dehydration in previous sessions, they provided us with an infuser that Karla and I could hook up ourselves, as well as three bags of saline. So Karla was able to hook up and unhook the saline, as well as remove the original infuser when my 48 hours of chemo were up. We'd use the saline three times on Day 3, 5 and 7. This saves us having to drive into the clinic, and apart from some heperin spraying on the ceiling, Karla handled the infusers very well.
So really, other than being a bit run down on Day 9, everything has gone pretty smoothly. I maybe overdid it a few days in terms of physical activity and or work, and I need to force myself to rest before I get too tired, and not after. The push over the past two weeks has been to gain weight back and I have been moderately successful, getting over 160 pounds for the first time since the start of the second chemo session. Lots of protein.
My parents are here and will provide support over the next week. Not quite ready to say we are in a "steady" state yet, but things have been encouraging. A week on Friday, I get my first CT scan since the chemo started - that will tell us if the chemo has had an effect.
In other news, Karla is doing very well with the baby. Just over two months to go and the baby boy is very active. We have also identified our au pair, and she will be moving into our house on April 10, giving her some time to adjust, as well as Isla getting used to her. She is from Panama, so we are hoping Isla will learn a second language while she is here.
Not looking forward to tomorrow but this email comes from a good place.
Andrew
Hello from the endless winter of the Northeast
I am heading in for my fourth chemo session tomorrow and if it goes as well as the third session, I'll be a very happy man.
On the day of the third chemo session, February 19, we had our old babysitter from Vermont, Abby, in place to take care of Isla (she now lives south of Boston in New Bedford). Meanwhile, my friend Scott was driving up from Jersey, arriving in the evening, and would stay six days to support us in case any issues arose. Don't know if we were more excited to see Scott himself, or to have some of his cooking while he was here. Thanks to Pam and Jack for making him available, and Scott for being...Scott.
No major issues at the clinic, except that the Canada game against Latvia, being played while I was getting infused, was not available on the hospital TV, much to my chagrin. I was able to see the last few minutes streamed on my computer after setting up a portable wi-fi. So Karla and I came home with me hooked up to the portable infuser and we had a great dinner with Scott and Abby (who stayed around a bit longer because Isla was initially not too sure about that strange man with a goatee).
Day 2 and Day 3 went relatively smoothly. I did get some quite intense lower jaw pain that I was able to manage for the most part with tylenol and ibuprofen. Unfortunately, the pain struck just as the Canadian women were mounting that incredible comeback against the US in the gold medal game. I actually had to bury my head as I waited for the ibuprofen to take effect, but the true friend that Scott is, he gave me the play-by-play and his voice held such excitement (sarcasm intended) when Canada scored the winner.
We also had a visit from a second infusion company. As I had issues with dehydration in previous sessions, they provided us with an infuser that Karla and I could hook up ourselves, as well as three bags of saline. So Karla was able to hook up and unhook the saline, as well as remove the original infuser when my 48 hours of chemo were up. We'd use the saline three times on Day 3, 5 and 7. This saves us having to drive into the clinic, and apart from some heperin spraying on the ceiling, Karla handled the infusers very well.
So really, other than being a bit run down on Day 9, everything has gone pretty smoothly. I maybe overdid it a few days in terms of physical activity and or work, and I need to force myself to rest before I get too tired, and not after. The push over the past two weeks has been to gain weight back and I have been moderately successful, getting over 160 pounds for the first time since the start of the second chemo session. Lots of protein.
My parents are here and will provide support over the next week. Not quite ready to say we are in a "steady" state yet, but things have been encouraging. A week on Friday, I get my first CT scan since the chemo started - that will tell us if the chemo has had an effect.
In other news, Karla is doing very well with the baby. Just over two months to go and the baby boy is very active. We have also identified our au pair, and she will be moving into our house on April 10, giving her some time to adjust, as well as Isla getting used to her. She is from Panama, so we are hoping Isla will learn a second language while she is here.
Not looking forward to tomorrow but this email comes from a good place.
Andrew
Thoughts on the Donation Website
Many of you have been to the donation website for my family and I at the YouCaring.Com website. I thought it was important that you know where this website came from, and for what purpose it will serve.
After the surgery, I received a tremendous outpouring of support from friends and family. In many cases, people were asking what they could do to help. I had many people offer to come out and visit, and provide Karla with assistance. My friend Bruce took it one step further, suggesting that he and his wife Karen would offer to purchase meals for us on a regular basis from a place like GrubHub or some other internet company that provided dinner to its customers. Karla felt that she could handle the meals portion at her end, so Bruce asked if there were other areas that we would need help. We really had no idea what medical bills we would face, what additional costs may arise, what my state of recovery would be once the baby was born and what sort of child support would be needed in order to keep our family moving forward.
So Bruce set up the Donation website so that people could send support if they wished, without having to ask "What can we do?" The website would be up for 60 days, and people could log in, read updates from Karla and I, and if they so chose, donate some money. We never anticipated it would end up raising what it did. First off, social media is incredible. Some friends posted the site on their Facebook pages, it got on certain timelines, and donations came in, some from people we did not even know (some of our friends have very generous friends and family of their own). Second, I never realized just how many people had been part of my life - friends I had lost touch with over the years were suddenly giving us money and I was very touched. Even now, as I write this, it is very emotional.
We immediately decided that all money raised from this site would go towards hiring an au pair who would assist Karla in raising Isla and the new baby, and give Karla some time to also help me. The au pair is scheduled to start on April 10 and will be with us for a year. I'll speak more on the au pair process in a later blog if any of you want further details on what it entails.
Two things: First, we did not ask for handouts. The website provided a method for people to lend their support to us in a meaningful way. It's not something to enhance our financial position, and we never thought it would raise as much money as it did. We really have no idea what additional costs we may face. Second, you can all rest assured that we will pay this generosity forward when we can. I don't think I can express this any more eloquently than something my friend Mike wrote a few weeks ago:
"Here’s how you “pay back” (although I’m certain you know this already). You will have an opportunity to be compassionate/selfless/generous to someone in need – just like you’ve been all your adult life. They will cross your path. Give of yourself as best you can. Do that when you can. Teach your children to do that (well on track already, I know) – teach by example. We come together, each with dire needs and each with gifts to share. The divine beauty in this plan is that in our need we find others who have a gift to share which happens to fit our need perfectly – just when we need it most, and at the same time we find others whose needs are an exact match for the gifts we have to share. This is what the universe had in mind for “community” here. The only trick is to keep our hearts & minds open to the connection when it’s in the moment, and to let the connection happen."
After the surgery, I received a tremendous outpouring of support from friends and family. In many cases, people were asking what they could do to help. I had many people offer to come out and visit, and provide Karla with assistance. My friend Bruce took it one step further, suggesting that he and his wife Karen would offer to purchase meals for us on a regular basis from a place like GrubHub or some other internet company that provided dinner to its customers. Karla felt that she could handle the meals portion at her end, so Bruce asked if there were other areas that we would need help. We really had no idea what medical bills we would face, what additional costs may arise, what my state of recovery would be once the baby was born and what sort of child support would be needed in order to keep our family moving forward.
So Bruce set up the Donation website so that people could send support if they wished, without having to ask "What can we do?" The website would be up for 60 days, and people could log in, read updates from Karla and I, and if they so chose, donate some money. We never anticipated it would end up raising what it did. First off, social media is incredible. Some friends posted the site on their Facebook pages, it got on certain timelines, and donations came in, some from people we did not even know (some of our friends have very generous friends and family of their own). Second, I never realized just how many people had been part of my life - friends I had lost touch with over the years were suddenly giving us money and I was very touched. Even now, as I write this, it is very emotional.
We immediately decided that all money raised from this site would go towards hiring an au pair who would assist Karla in raising Isla and the new baby, and give Karla some time to also help me. The au pair is scheduled to start on April 10 and will be with us for a year. I'll speak more on the au pair process in a later blog if any of you want further details on what it entails.
Two things: First, we did not ask for handouts. The website provided a method for people to lend their support to us in a meaningful way. It's not something to enhance our financial position, and we never thought it would raise as much money as it did. We really have no idea what additional costs we may face. Second, you can all rest assured that we will pay this generosity forward when we can. I don't think I can express this any more eloquently than something my friend Mike wrote a few weeks ago:
"Here’s how you “pay back” (although I’m certain you know this already). You will have an opportunity to be compassionate/selfless/generous to someone in need – just like you’ve been all your adult life. They will cross your path. Give of yourself as best you can. Do that when you can. Teach your children to do that (well on track already, I know) – teach by example. We come together, each with dire needs and each with gifts to share. The divine beauty in this plan is that in our need we find others who have a gift to share which happens to fit our need perfectly – just when we need it most, and at the same time we find others whose needs are an exact match for the gifts we have to share. This is what the universe had in mind for “community” here. The only trick is to keep our hearts & minds open to the connection when it’s in the moment, and to let the connection happen."
Second Chemo
I originally sent this in an email on February 17th:
Hey everyone
I never sent out an update on the second chemo session, and I am preparing to have my third infusion this Wednesday, February 19th, so I thought I'd give everyone an update on the second session and let you know how we are doing. I also want to really thank Bruce for setting up the donation website (thoughts on the website in the next blog entry). Karla and I have been so touched by the generosity of people, some of whom we have not seen in more than a decade. It's overwhelming and I don't know what to say. I hope I can put together some words over the next few days.
The second chemo was originally scheduled for Wednesday, February 5 but because of a snowstorm (one of many in Boston this year) we pushed it to Thursday, the 6th. My blood tests came back a bit stronger so no additional transfusion this time, although I was scheduled to return to the cancer clinic on Saturday the 8th for some additional fluids and to get the port removed.
The session went well. They adjusted my nausea meds and the hope was that I would respond better than I did the first time. I went home with the infuser after four hours. It's tough getting hooked back up to the infuser because you are feeling pretty good two weeks out from the previous session. I probably felt as good as I have felt since the surgery when we drove to the hospital that morning. But then the lethargy sinks in. You are drugged up and just super-tired. No motivation to really do anything except watch TV and nap. Karla stayed with me at the clinic all day and the Cuthill grandparents watched Isla at home. I was pretty much like that all through Friday too - lethargic and sleepy all day. I was really hoping that I would be able to function work-wise, and maybe I will as I move on to the future sessions. We were back at the clinic on Saturday and no major issues getting fluids and the infuser removed.
One thing I have been struggling with is keeping myself hydrated. I am really trying to drink more than two liters each day but it sometimes is just not enough. So we had an additional fluid IV appointment at the clinic scheduled for Thursday, the 13th. The problem was that on Tuesday, I started hiccupping - constantly. These were deep hiccups where you feel you might throw up. Very painful, so we got rescheduled to go back to the clinic on Wednesday instead. I was very frustrated because I thought by Day 6 after chemo, things were supposed to get better, not worse.
And then poor little Isla, who runs everywhere, fell down the stairs and hit her head on the bannister, opening up a deep gash on her right eyelid. So Karla, grandparents and Isla spent the day Tuesday at Winchester hospital getting the gash glued together (no stitches). She was very brave but the whole experience was very traumatic for her (and her parents). The wound has healed nicely, although we are still waiting for the final scab to fall off. To add insult to injury, on Wednesday morning, both Karla and Isla woke up with the flu and were extremely sick (they had met with friends at the zoo on Sunday and caught a bug from them). So my Dad took me, still hiccupping away, into the clinic on Wednesday and stayed with me while they hydrated me again and figured out some better acid reflux meds to take. I started to come out of my problems on Thursday, but Karla and Isla fought the flu for several days.
The good news is that each day, I have felt better and stronger. Today is Monday and I am feeling as good as I have since the surgery. I am drinking enough water (it seems) each day, doing some RSI work and getting our taxes straightened out and putting back on some weight (although I still have a loooooong way to go). Not looking forward to Wednesday, but feel like I am in a good place right now. Thanks to Scott who will be driving up from Jersey to help us out this week. We just don't know how chemo will go each time and having someone here as back-up is so reassuring.
We are looking long term at an au pair option. As Karla gets closer to delivery date, we need a more permanent support option and based on what he have heard from some friends who have had au pairs, it is probably the best thing for us to do.
Sorry for the lengthiness and all the best.
Andrew
Hey everyone
I never sent out an update on the second chemo session, and I am preparing to have my third infusion this Wednesday, February 19th, so I thought I'd give everyone an update on the second session and let you know how we are doing. I also want to really thank Bruce for setting up the donation website (thoughts on the website in the next blog entry). Karla and I have been so touched by the generosity of people, some of whom we have not seen in more than a decade. It's overwhelming and I don't know what to say. I hope I can put together some words over the next few days.
The second chemo was originally scheduled for Wednesday, February 5 but because of a snowstorm (one of many in Boston this year) we pushed it to Thursday, the 6th. My blood tests came back a bit stronger so no additional transfusion this time, although I was scheduled to return to the cancer clinic on Saturday the 8th for some additional fluids and to get the port removed.
The session went well. They adjusted my nausea meds and the hope was that I would respond better than I did the first time. I went home with the infuser after four hours. It's tough getting hooked back up to the infuser because you are feeling pretty good two weeks out from the previous session. I probably felt as good as I have felt since the surgery when we drove to the hospital that morning. But then the lethargy sinks in. You are drugged up and just super-tired. No motivation to really do anything except watch TV and nap. Karla stayed with me at the clinic all day and the Cuthill grandparents watched Isla at home. I was pretty much like that all through Friday too - lethargic and sleepy all day. I was really hoping that I would be able to function work-wise, and maybe I will as I move on to the future sessions. We were back at the clinic on Saturday and no major issues getting fluids and the infuser removed.
One thing I have been struggling with is keeping myself hydrated. I am really trying to drink more than two liters each day but it sometimes is just not enough. So we had an additional fluid IV appointment at the clinic scheduled for Thursday, the 13th. The problem was that on Tuesday, I started hiccupping - constantly. These were deep hiccups where you feel you might throw up. Very painful, so we got rescheduled to go back to the clinic on Wednesday instead. I was very frustrated because I thought by Day 6 after chemo, things were supposed to get better, not worse.
And then poor little Isla, who runs everywhere, fell down the stairs and hit her head on the bannister, opening up a deep gash on her right eyelid. So Karla, grandparents and Isla spent the day Tuesday at Winchester hospital getting the gash glued together (no stitches). She was very brave but the whole experience was very traumatic for her (and her parents). The wound has healed nicely, although we are still waiting for the final scab to fall off. To add insult to injury, on Wednesday morning, both Karla and Isla woke up with the flu and were extremely sick (they had met with friends at the zoo on Sunday and caught a bug from them). So my Dad took me, still hiccupping away, into the clinic on Wednesday and stayed with me while they hydrated me again and figured out some better acid reflux meds to take. I started to come out of my problems on Thursday, but Karla and Isla fought the flu for several days.
The good news is that each day, I have felt better and stronger. Today is Monday and I am feeling as good as I have since the surgery. I am drinking enough water (it seems) each day, doing some RSI work and getting our taxes straightened out and putting back on some weight (although I still have a loooooong way to go). Not looking forward to Wednesday, but feel like I am in a good place right now. Thanks to Scott who will be driving up from Jersey to help us out this week. We just don't know how chemo will go each time and having someone here as back-up is so reassuring.
We are looking long term at an au pair option. As Karla gets closer to delivery date, we need a more permanent support option and based on what he have heard from some friends who have had au pairs, it is probably the best thing for us to do.
Sorry for the lengthiness and all the best.
Andrew
First Chemo
I originally wrote the following in an email on January 28:
On Thursday, January 23rd, I went in for my first chemo session. They hooked me up to a whole lot of drugs, including iron, as blood tests were showing I was somewhat deficient. The session went well, and because I had a cath-port inserted under my skin, hooking me up to the various IVs was pretty simple. The rest of the day went well - I spent 4 hours at the hospital and was released with the portable infuser (it's like a man-bag, baby - think Austin Powers) that would pump chemo into me for the next 36 hours. I was scheduled to go in again on Saturday to have a blood transfusion (to pump up my blood levels which were low, and get the port removed).
On Friday, I woke up with the nastiest hiccups that caused me to puke several times. Over the phone, the doctors suggested several things including nausea medication. We tried but things weren't going well. I was having a hard time feeling like eating or drinking anything.
So Saturday, I was admitted to Brigham and Women's and this is where things get grey. Apparently I was severely dehydrated and was continuing to puke. I honestly don't remember much about Saturday or Sunday. I was hooked up to a bunch of IVs pumping many different things into me, and I was miserable. I was in and out of consciousness as some of the drugs knocked me out. Karla spent Saturday night at the hospital with me and most of Sunday.
By Monday, things got better and they released me that night. Still felt a little bit off (queasy stomach), but am feeling much better today. So caught up on a bit of work today and I have tried hard to drink a lot, and put down as much food as possible.
My friend Pam has pointed out that this is a learning game as everyone reacts differently to chemo, so it's not necessarily a surprise that things didn't go perfectly the first time. We go back to the doctor tomorrow to assess whether there is a better concoction of drugs for the second chemo next Wednesday.
Look, this may be too much detail for all of you to know, and if you want to be left out of future emails, let me know. Also let me know if the email address I used for you is best. I look at this past week as a step to the side rather than a step forward or a step back. Hopefully things go better with second chemo next week.
All the best and go Broncos!
Andrew
On Thursday, January 23rd, I went in for my first chemo session. They hooked me up to a whole lot of drugs, including iron, as blood tests were showing I was somewhat deficient. The session went well, and because I had a cath-port inserted under my skin, hooking me up to the various IVs was pretty simple. The rest of the day went well - I spent 4 hours at the hospital and was released with the portable infuser (it's like a man-bag, baby - think Austin Powers) that would pump chemo into me for the next 36 hours. I was scheduled to go in again on Saturday to have a blood transfusion (to pump up my blood levels which were low, and get the port removed).
On Friday, I woke up with the nastiest hiccups that caused me to puke several times. Over the phone, the doctors suggested several things including nausea medication. We tried but things weren't going well. I was having a hard time feeling like eating or drinking anything.
So Saturday, I was admitted to Brigham and Women's and this is where things get grey. Apparently I was severely dehydrated and was continuing to puke. I honestly don't remember much about Saturday or Sunday. I was hooked up to a bunch of IVs pumping many different things into me, and I was miserable. I was in and out of consciousness as some of the drugs knocked me out. Karla spent Saturday night at the hospital with me and most of Sunday.
By Monday, things got better and they released me that night. Still felt a little bit off (queasy stomach), but am feeling much better today. So caught up on a bit of work today and I have tried hard to drink a lot, and put down as much food as possible.
My friend Pam has pointed out that this is a learning game as everyone reacts differently to chemo, so it's not necessarily a surprise that things didn't go perfectly the first time. We go back to the doctor tomorrow to assess whether there is a better concoction of drugs for the second chemo next Wednesday.
Look, this may be too much detail for all of you to know, and if you want to be left out of future emails, let me know. Also let me know if the email address I used for you is best. I look at this past week as a step to the side rather than a step forward or a step back. Hopefully things go better with second chemo next week.
All the best and go Broncos!
Andrew
Surgery and Recovery
This mainly covers the time period from December 22nd to December 26th of 2013:
Karla got to work immediately. She had asked the nurse practitioner and nurses where was the best place to have surgery. Overwhelmingly, they all suggested the Dana-Farber Cancer Institute in downtown Boston (actually, it would be either the Beth Israel Hospital or the Brigham and Women's Hospital where the surgery would occur, and then my continued treatment post-surgery would occur at Dana-Farber). We were visited that night by the Winchester surgeon who indicated surgery would take place at 4PM the next day (Sunday, December 22). Meanwhile, Karla had been talking to her Mom (a former nurse) about how to get us to Dana-Farber. Me, I was so whacked out on painkillers that I don't have any recollection of staying overnight at Winchester Hospital.
When the surgeon came by early the next morning, Karla requested that I get transferred. There was no guarantee I would get into the other hospitals, but things were put in place and by 4PM on the 22nd, I was in another ambulance, on my way to the Brigham and Women's Hospital in downtown Boston. Strangely, I was also going to be in the hospital where Karla was scheduled to give birth to our son five months later.
While all of this was going on, Karla's Mom and been talking to her cousin Marshall, who lives in Boston, and who had attended our wedding. In turns out that he played on the same softball team as Charlie Fuchs, who happened to be the chief oncologist of the gastro-intestinal division at Dana-Farber. Dana-Farber is an amazing institute. It is renowned as one of the best cancer centers in the US. Think of it as a place filled with doctors who specialize in one type of cancer only. You know you will be getting the best treatment. Marshall had reached out to Charlie, and I think he was instrumental in getting me scheduled for surgery, and also having Dr. Brian Wolpin as my oncologist going forward
Surgery was now scheduled for 2PM on Monday the 23rd. I do have faint recollections of being wheeled into the operating room (it was extremely cold) but I was still on painkillers and my memories are few and muddled if there are any. My surgeon was Dr. Jennifer Irani and per Karla, the surgery itself took two hours.
If you look at the image to the right (of the colon), my cancer was all in the cecum which is essentially right at the start of the colon.
They essentially removed the whole cecum and appendix and then reattached my colon without the cecum in the hopes that it would continue to function normally.
Unfortunately, they also confirmed a high number of tumors in my liver (as had shown up in the CT scan) and those were not operable.
So, post surgery, I remained in the hospital through the 26th. Each day, I would try and do more stuff. No solid foods, just jello or broth and it was hospital quality, so not the best. The big goal for me was to have a BM (bowel movement) to indicate that my colon was back working again. Success on the night of the 25th (my Christmas gift to the world)!
I had a whole slew of visitors come through. Nurses, nurse assistants, the surgeons, the oncologists, and of course family. Karla's folks brought Isla in on the 25th but she did not react well when she figured out that Mommy and Daddy were not coming home right away. I can't imagine what must have been going through her head, seeing Daddy in the hospital like that. I have been amazed at her three-year old resilience throughout this process. My folks also came down from Ottawa and between the DeGaetano parents and the Cuthill parents, Karla, Isla and I would be well taken care of over the next week.
One significant visitor was Dr. Wolpin, who would be my oncologist going forward. He gave Karla and I the straight goods: when talking about life expectancy, the numbers for this type of cancer were not good and in general, you should think of your remaining life in years rather than decades. However, there was a big "but" here - but most of the statistics are based upon people who get this cancer late in life, generally in their 70's or later. Me, I was young and healthy, and so it was very possible that I would outlive the statistics by a long shot. He also outlined what I should expect going forward. Chemo sessions every second week, starting about a month after surgery (there was a risk that the chemo drugs could interfere with the healing process). The sessions themselves would occur over a 48 hour period, starting in the hospital, but continuing at home as the drugs would be infused into my system through a portable infuser. He felt that the impacts of chemo for this type of cancer were relatively benign, and that I should be able to continue to work during the process. He did caution that everyone reacts to the chemo in different ways. It was a lot to take in, and Karla and I did break down and cry at various points in time during our meeting. Overall, I liked Dr. Wolpin, and felt that he would be a good doctor to manage my recovery from this illness.
I have to tell you that I HATE being in a hospital. Sleep is virtually impossible, as someone comes into your room to check on something every two or three hours. The smells, the sounds, the uncomfortableness of the bed. Going to the bathroom is a chore because you have to wheel your IV drip in with you and then make sure you don't get tangled up in all the wires. Your wearing that hokey hospital gown that opens up at the back, you are not showering and you are (in my case) constantly in some level of pain. Some of the nurses and nurse assistants are good and some not so much. But once I had the BM on the 25th, I was all for going home as soon as possible.
So on Thursday, the 26th, Karla and I made it abundantly clear that we wanted to leave, and after much concern and many machinations to make it happen, I was able to go home by about 6PM. It turned out to be the right decision, as my recovery progressed quite quickly once I got home. We celebrated Christmas with Isla on Saturday, December 28th. Luckily, at almost three years old, she was not really aware that the 25th had come and gone.
I won't get into too much detail about the recovery itself. My stomach felt like I had overloaded on situps, but as the days passed, that feeling started to ease. I wrote the following in an email to friends on January 7th:
I remained in hospital through to Thursday, December 26
before going home. Luckily, we had relatives visiting so my wife and
daughter had fantastic support. I have been recuperating
at home since then, slowly weaning myself off painkillers, and slowly but
surely regaining my appetite. Recovery from this surgery should take
a couple more weeks. I find I can function fairly normally for parts
of the day, but need to take several naps to recharge.
I will be doing chemotherapy sessions to manage the additional tumors in my body, and I’m told that I should be able to function relatively normally while the chemo is ongoing. I am scheduled for my first chemo in two weeks, and will be on a schedule of chemo for every two weeks for the next six months minimum. Most likely, it will be part of the rest of my life, although there will be periods of a few months where I will take breaks.
I plan to live my life as normal as possible going forward. I will continue to work at RSI, I will continue to highly anticipate the birth of my son in May, and Karla, Isla and I will continue to travel (and hopefully see all of you here and there). This is not a death sentence. While I may not live into my nineties, I have every expectation that I will be around for a long time to come, and this is just a challenge (albeit a fairly big one) that I will overcome.
Karla, Isla and I will probably move permanently to the Boston area at some point this year. I just can't get better medical attention than what's available to me here.
Karla got to work immediately. She had asked the nurse practitioner and nurses where was the best place to have surgery. Overwhelmingly, they all suggested the Dana-Farber Cancer Institute in downtown Boston (actually, it would be either the Beth Israel Hospital or the Brigham and Women's Hospital where the surgery would occur, and then my continued treatment post-surgery would occur at Dana-Farber). We were visited that night by the Winchester surgeon who indicated surgery would take place at 4PM the next day (Sunday, December 22). Meanwhile, Karla had been talking to her Mom (a former nurse) about how to get us to Dana-Farber. Me, I was so whacked out on painkillers that I don't have any recollection of staying overnight at Winchester Hospital.
When the surgeon came by early the next morning, Karla requested that I get transferred. There was no guarantee I would get into the other hospitals, but things were put in place and by 4PM on the 22nd, I was in another ambulance, on my way to the Brigham and Women's Hospital in downtown Boston. Strangely, I was also going to be in the hospital where Karla was scheduled to give birth to our son five months later.
While all of this was going on, Karla's Mom and been talking to her cousin Marshall, who lives in Boston, and who had attended our wedding. In turns out that he played on the same softball team as Charlie Fuchs, who happened to be the chief oncologist of the gastro-intestinal division at Dana-Farber. Dana-Farber is an amazing institute. It is renowned as one of the best cancer centers in the US. Think of it as a place filled with doctors who specialize in one type of cancer only. You know you will be getting the best treatment. Marshall had reached out to Charlie, and I think he was instrumental in getting me scheduled for surgery, and also having Dr. Brian Wolpin as my oncologist going forward
Surgery was now scheduled for 2PM on Monday the 23rd. I do have faint recollections of being wheeled into the operating room (it was extremely cold) but I was still on painkillers and my memories are few and muddled if there are any. My surgeon was Dr. Jennifer Irani and per Karla, the surgery itself took two hours.
Unfortunately, they also confirmed a high number of tumors in my liver (as had shown up in the CT scan) and those were not operable.
So, post surgery, I remained in the hospital through the 26th. Each day, I would try and do more stuff. No solid foods, just jello or broth and it was hospital quality, so not the best. The big goal for me was to have a BM (bowel movement) to indicate that my colon was back working again. Success on the night of the 25th (my Christmas gift to the world)!
I had a whole slew of visitors come through. Nurses, nurse assistants, the surgeons, the oncologists, and of course family. Karla's folks brought Isla in on the 25th but she did not react well when she figured out that Mommy and Daddy were not coming home right away. I can't imagine what must have been going through her head, seeing Daddy in the hospital like that. I have been amazed at her three-year old resilience throughout this process. My folks also came down from Ottawa and between the DeGaetano parents and the Cuthill parents, Karla, Isla and I would be well taken care of over the next week.
One significant visitor was Dr. Wolpin, who would be my oncologist going forward. He gave Karla and I the straight goods: when talking about life expectancy, the numbers for this type of cancer were not good and in general, you should think of your remaining life in years rather than decades. However, there was a big "but" here - but most of the statistics are based upon people who get this cancer late in life, generally in their 70's or later. Me, I was young and healthy, and so it was very possible that I would outlive the statistics by a long shot. He also outlined what I should expect going forward. Chemo sessions every second week, starting about a month after surgery (there was a risk that the chemo drugs could interfere with the healing process). The sessions themselves would occur over a 48 hour period, starting in the hospital, but continuing at home as the drugs would be infused into my system through a portable infuser. He felt that the impacts of chemo for this type of cancer were relatively benign, and that I should be able to continue to work during the process. He did caution that everyone reacts to the chemo in different ways. It was a lot to take in, and Karla and I did break down and cry at various points in time during our meeting. Overall, I liked Dr. Wolpin, and felt that he would be a good doctor to manage my recovery from this illness.
I have to tell you that I HATE being in a hospital. Sleep is virtually impossible, as someone comes into your room to check on something every two or three hours. The smells, the sounds, the uncomfortableness of the bed. Going to the bathroom is a chore because you have to wheel your IV drip in with you and then make sure you don't get tangled up in all the wires. Your wearing that hokey hospital gown that opens up at the back, you are not showering and you are (in my case) constantly in some level of pain. Some of the nurses and nurse assistants are good and some not so much. But once I had the BM on the 25th, I was all for going home as soon as possible.
So on Thursday, the 26th, Karla and I made it abundantly clear that we wanted to leave, and after much concern and many machinations to make it happen, I was able to go home by about 6PM. It turned out to be the right decision, as my recovery progressed quite quickly once I got home. We celebrated Christmas with Isla on Saturday, December 28th. Luckily, at almost three years old, she was not really aware that the 25th had come and gone.
I won't get into too much detail about the recovery itself. My stomach felt like I had overloaded on situps, but as the days passed, that feeling started to ease. I wrote the following in an email to friends on January 7th:
On Saturday, December 21, I had some acute stomach pains
while at home in Reading MA and
fainted. An ambulance was called and I was admitted to Winchester
Hospital. As part of the process of determining if what I was
experiencing was an appendicitis attack (which seemed to be the case) they took
a catscan of my stomach and chest area. Unfortunately, the catscan also
showed a tumor on my colon, and also indicated it had spread to several other
areas of my body. We transferred to Brigham & Women’s Hospital
downtown and I had surgery on Monday. They removed the tumor on my colon
as well as my appendix.
I will be doing chemotherapy sessions to manage the additional tumors in my body, and I’m told that I should be able to function relatively normally while the chemo is ongoing. I am scheduled for my first chemo in two weeks, and will be on a schedule of chemo for every two weeks for the next six months minimum. Most likely, it will be part of the rest of my life, although there will be periods of a few months where I will take breaks.
I plan to live my life as normal as possible going forward. I will continue to work at RSI, I will continue to highly anticipate the birth of my son in May, and Karla, Isla and I will continue to travel (and hopefully see all of you here and there). This is not a death sentence. While I may not live into my nineties, I have every expectation that I will be around for a long time to come, and this is just a challenge (albeit a fairly big one) that I will overcome.
Karla, Isla and I will probably move permanently to the Boston area at some point this year. I just can't get better medical attention than what's available to me here.
Friday, April 11, 2014
Worst Day Of My Life
December 21, 2013
I don't remember collapsing onto the floor that Saturday morning, but I do remember Karla and her parents all gathered around me as I lay on the floor in the living room, with Karla's Mom yelling to call 911. Apparently I had fainted from the pain in my stomach and had actually been out cold for a minute or two. The whole thing seemed surreal - first to arrive were the firemen and then the EMTs. I was strapped to a gurney and carried down the stairs to the ground floor, then wheeled out to a waiting ambulance. In all my life, I'd never been in an ambulance before. Crazy isn't it? 40 years of playing ice hockey, 25 years of soccer, and never once was I carted off the field or the rink with a serious injury.
The closest hospital to our home in Reading was Winchester Hospital in the next town over. It took about ten minutes to get there and I was wheeled into the Emergency department. Karla followed close behind and joined me in the admitting area. I guess it was a busy day at the hospital, because my room consisted of a gurney against the wall in the hallway just down from admitting desk. We would stay there, pretty much in that spot, for the next seven or eight hours.
The pain had eased somewhat, so I was no longer in any danger of passing out. My assumption was that I was having an apendicitis attack. It seemed to be pain in that general area, and my brother Jamie and my niece Hailey had both had their appendices removed over the years. In order to determine if that was the case, I was scheduled for a CT scan that evening. A CT scan allows doctors to get a very precise look at the internal organs in your abdominal and pelvic areas. Before getting the scan, you have to drink two bottles of oral contrast. Nasty stuff - it's essentially a dye that allows some organs to show up better on the scan. Unfortunately, you have to wait about two hours to process the stuff. I was finally wheeled in for a scan in the late evening. The scan itself was relatively quick - you basically pass through a huge tube (think of it as a miniature Stargate!) several times and then you are done. Wheeled back to my "room" against the wall in the hallway. More waiting.
I was wheeled into a private room finally. Karla had been asking about when this would finally occur so we thought it was our asking that had finally brought this about. However, the arrival of a nurse practitioner shortly after getting settled in the room changed everything. He looked sombre, and proceeded to tell us that what I was experiencing was indeed an appendicitis attack, but that it had been brought on by a tumor on my colon, specifically the cecum. Whack! I felt like I had been slapped in the face. What? Me? But he kept talking...unfortunately, the cancer had spread, with the CT scan showing small tumors in my lungs and lymph nodes, and more tumors in my liver. I looked for something in his eyes or expression to give me something positive, something like "but this can be treated and beaten". No more information was forthcoming. That was it. I had Stage 4 Colon Cancer and he thankfully left Karla and I alone to shed some tears and think about how are lives had changed so dramatically in that instant.
I don't remember collapsing onto the floor that Saturday morning, but I do remember Karla and her parents all gathered around me as I lay on the floor in the living room, with Karla's Mom yelling to call 911. Apparently I had fainted from the pain in my stomach and had actually been out cold for a minute or two. The whole thing seemed surreal - first to arrive were the firemen and then the EMTs. I was strapped to a gurney and carried down the stairs to the ground floor, then wheeled out to a waiting ambulance. In all my life, I'd never been in an ambulance before. Crazy isn't it? 40 years of playing ice hockey, 25 years of soccer, and never once was I carted off the field or the rink with a serious injury.
The closest hospital to our home in Reading was Winchester Hospital in the next town over. It took about ten minutes to get there and I was wheeled into the Emergency department. Karla followed close behind and joined me in the admitting area. I guess it was a busy day at the hospital, because my room consisted of a gurney against the wall in the hallway just down from admitting desk. We would stay there, pretty much in that spot, for the next seven or eight hours.
The pain had eased somewhat, so I was no longer in any danger of passing out. My assumption was that I was having an apendicitis attack. It seemed to be pain in that general area, and my brother Jamie and my niece Hailey had both had their appendices removed over the years. In order to determine if that was the case, I was scheduled for a CT scan that evening. A CT scan allows doctors to get a very precise look at the internal organs in your abdominal and pelvic areas. Before getting the scan, you have to drink two bottles of oral contrast. Nasty stuff - it's essentially a dye that allows some organs to show up better on the scan. Unfortunately, you have to wait about two hours to process the stuff. I was finally wheeled in for a scan in the late evening. The scan itself was relatively quick - you basically pass through a huge tube (think of it as a miniature Stargate!) several times and then you are done. Wheeled back to my "room" against the wall in the hallway. More waiting.
I was wheeled into a private room finally. Karla had been asking about when this would finally occur so we thought it was our asking that had finally brought this about. However, the arrival of a nurse practitioner shortly after getting settled in the room changed everything. He looked sombre, and proceeded to tell us that what I was experiencing was indeed an appendicitis attack, but that it had been brought on by a tumor on my colon, specifically the cecum. Whack! I felt like I had been slapped in the face. What? Me? But he kept talking...unfortunately, the cancer had spread, with the CT scan showing small tumors in my lungs and lymph nodes, and more tumors in my liver. I looked for something in his eyes or expression to give me something positive, something like "but this can be treated and beaten". No more information was forthcoming. That was it. I had Stage 4 Colon Cancer and he thankfully left Karla and I alone to shed some tears and think about how are lives had changed so dramatically in that instant.
Introduction
I'd like to think I'd led somewhat of a charmed life before December 21st of 2013. I was 47, had a beautiful wife, Karla and an amazing daughter Isla who was about to turn three years old. In addition, a little baby boy was on the way, due to arrive in May. We had recently moved from Burlington, Vermont to just outside Boston so that I could pursue a new assignment with my company. It was exciting to be back in a big city again (Trader Joe's, Whole Foods, Target, NHL Hockey) and we had an amazing trip planned to the US Virgin Islands in late January.
Karla's parents were in town to spend Christmas with us, and had graciously allowed Karla and I to have a date night on Friday, December 20th. It would be nice to say that we ate at the most amazing restaurant and had a meal we'd never forget, but we actually just went to a sports bar where I had wings and a beer, and then we followed it up with a command performance of The Hobbit: Desolation of Smaug at a local movie theater. Great movie, by the way, loved the barrel scene...
The next day, I had some minor pains in my right side when I woke up, but nothing major and I had my usual bowl of Shreddies for breakfast. I felt somewhat weird afterwards and decided to have a lie down in bed (it was a Saturday). I came downstairs a few hours later and lay on the couch in the living room, and the pain was a bit worse. Karla was in the kitchen and asked me if I wanted to see a doctor. I moved to get up, but instead fell to the floor in pain...and my new life began.
Why am I writing this blog? For several reasons: for friends and family, I want to have a place where they can get updates on how things are going. To this point, I have tried to be good about sending emails (and some of what is included here was part of emails that I sent out in early 2014 before setting up this blog) but I thought it would be better just to have everything in one place. For my direct family, it is something about me that they can always access and read. I plan to be around for a long time, don't get me wrong, but I'd like to think that some of who I am, and what I am experiencing will be around for longer than that. Finally, for purely selfish reasons, I do find that writing my thoughts and feelings has a cathartic effect on me.
I will continue to write, sometimes more often, sometimes less often, depending upon how I am feeling and if there is something meaningful to pass on. While my illness will be a focus, I also plan on updating people on other events going on for me and my family on these pages. Feel free to read what you like and comments are always welcome.
.
Karla's parents were in town to spend Christmas with us, and had graciously allowed Karla and I to have a date night on Friday, December 20th. It would be nice to say that we ate at the most amazing restaurant and had a meal we'd never forget, but we actually just went to a sports bar where I had wings and a beer, and then we followed it up with a command performance of The Hobbit: Desolation of Smaug at a local movie theater. Great movie, by the way, loved the barrel scene...
The next day, I had some minor pains in my right side when I woke up, but nothing major and I had my usual bowl of Shreddies for breakfast. I felt somewhat weird afterwards and decided to have a lie down in bed (it was a Saturday). I came downstairs a few hours later and lay on the couch in the living room, and the pain was a bit worse. Karla was in the kitchen and asked me if I wanted to see a doctor. I moved to get up, but instead fell to the floor in pain...and my new life began.
Why am I writing this blog? For several reasons: for friends and family, I want to have a place where they can get updates on how things are going. To this point, I have tried to be good about sending emails (and some of what is included here was part of emails that I sent out in early 2014 before setting up this blog) but I thought it would be better just to have everything in one place. For my direct family, it is something about me that they can always access and read. I plan to be around for a long time, don't get me wrong, but I'd like to think that some of who I am, and what I am experiencing will be around for longer than that. Finally, for purely selfish reasons, I do find that writing my thoughts and feelings has a cathartic effect on me.
I will continue to write, sometimes more often, sometimes less often, depending upon how I am feeling and if there is something meaningful to pass on. While my illness will be a focus, I also plan on updating people on other events going on for me and my family on these pages. Feel free to read what you like and comments are always welcome.
.
Subscribe to:
Posts (Atom)