My fingers are shaking and this will have no edits. They have tried everything medicine has but this infection has taken over and although Dan is still fighting and hanging on, he is dying. I use that word because I am already weary of "he's not going to make it" or "he's not doing well". He was so tired and he told the nurses and doctors he just wanted to "go into a coma" if that meant he's get a rest. He is very comfortable and in no pain. They are giving him drugs to keep his blood pressure up, etc., but it won't be long until his body is too taxed.
I will write more later but I want you all to know how much you all mean to us and how we have felt your love and support in every way. I can say my life will never be the same because of having known and been married to Dan. It would not have been as enriched, although my heart is broken because he is leaving us...he is my hero.
He never wanted people to visit him when he felt terrible or wasn't able to enjoy company, so I know it's the right thing to do to let him rest without too many people seeing him in this state (although my mom, his mom, and his brother are here).
He still looks good to me. Much love, and I am sorry for all of us. Susan
Saturday, January 31, 2009
Friday, January 30, 2009
I am writing from the computers at the ICU and I wanted to give everyone waiting an update. Dan's breathing became increasingly labored today, and although his oxygen levels and heart still looked ok, the doctors were concerned that his body was getting much too tired to continue on with such labored breaths. They discussed the possibility of "intubation" or installing a breathing tube, and we all--doctors from many departments, Dan himself, and I decided that that would be the best option. It means that he will be sedated as long as the tube is in. He should be able to hear people but he won't be able to respond. Dan was in and out of lucidity (for lack of a better word) today so I asked him as many different ways as I could what he wanted to do, and his answer was "let's do it" since his body and mind just want to rest.
The silver lining of hope and the idea is still to give him the white blood cell transfusion tonight and continue with the antibiotics, so if his body doesn't have to work so hard they are able to buy some time to see if these things work. His leukemia doctor said they want to give him every chance available, and that's what helped make this decision.
They just completed placing the tube in, along with a feeding tube should he need it. I don't need to say that the past few moments were the most surreal and difficult of my life. That said, there is still the hope that his body will figure out how to fight this infection and he'll be able to breathe on his own soon.
That's all I can write for now. I will have to see if visitation is an option in the coming days...probably not, but there's family here so that is good.
Much love to all and know I can feel the love back. Also, I know that Dan wants you to think of him in his healthy state, free to do all of the things he loves and not a victim of this terrible disease.
Susan
The silver lining of hope and the idea is still to give him the white blood cell transfusion tonight and continue with the antibiotics, so if his body doesn't have to work so hard they are able to buy some time to see if these things work. His leukemia doctor said they want to give him every chance available, and that's what helped make this decision.
They just completed placing the tube in, along with a feeding tube should he need it. I don't need to say that the past few moments were the most surreal and difficult of my life. That said, there is still the hope that his body will figure out how to fight this infection and he'll be able to breathe on his own soon.
That's all I can write for now. I will have to see if visitation is an option in the coming days...probably not, but there's family here so that is good.
Much love to all and know I can feel the love back. Also, I know that Dan wants you to think of him in his healthy state, free to do all of the things he loves and not a victim of this terrible disease.
Susan
Thursday, January 29, 2009
Today brought a turn of events in the wrong direction--one which I knew was a possibility, but I and the entire 12th floor of Sloan-Kettering hoped we could avoid.
The Intensive Care Unit doctors came today since the persistent pseudomonis infection that's been causing most of Dan's recent problems came back and is not responding very well to antibiotics. His heart rate is still very high and his fevers are too persistent to leave alone, so they decided it would be best to take him to the Intensive Care Unit. His blood pressure has also been dropping to dangerously low levels so they need to be able to control that with medications. The ICU unit is so much more able to deal with these serious complications, but it's a last resort because it means he's gotten significantly sicker.
I am in the large waiting area while they install some new "lines" so they can better monitor and control his blood pressure and deliver the medications, take blood, etc. without poking him all of the time. They are trying every weapon in their arsenal and are very creative people. I trust that they are offering Dan the best chance he could have on the planet earth right now, but we'll have to see if this infection has a different idea. He will also be getting a white blood cell injection tomorrow, something they don't often do but thought of as another tool to stimulate his body's own fight. The ICU doctor said this was sort of a "Hail Mary pass", and although I'm not Catholic, I would convert if it worked.
The next couple of days will be critical in determining if there's a way to fight this infection. Since I know some of you worry about me, I will tell you that my mom is coming to stay with me. She's a huge support and source of comfort to me so I'm glad she'll be here.
They don't allow people to stay overnight so I will going home to change my clothes and take a needed shower. I'm sure they'll appreciate that in the ICU.
Dan is still fighting really hard and so am I. The transplant is still scheduled and is still the ultimate goal, so keep visions of that in your thoughts tonight.
The Intensive Care Unit doctors came today since the persistent pseudomonis infection that's been causing most of Dan's recent problems came back and is not responding very well to antibiotics. His heart rate is still very high and his fevers are too persistent to leave alone, so they decided it would be best to take him to the Intensive Care Unit. His blood pressure has also been dropping to dangerously low levels so they need to be able to control that with medications. The ICU unit is so much more able to deal with these serious complications, but it's a last resort because it means he's gotten significantly sicker.
I am in the large waiting area while they install some new "lines" so they can better monitor and control his blood pressure and deliver the medications, take blood, etc. without poking him all of the time. They are trying every weapon in their arsenal and are very creative people. I trust that they are offering Dan the best chance he could have on the planet earth right now, but we'll have to see if this infection has a different idea. He will also be getting a white blood cell injection tomorrow, something they don't often do but thought of as another tool to stimulate his body's own fight. The ICU doctor said this was sort of a "Hail Mary pass", and although I'm not Catholic, I would convert if it worked.
The next couple of days will be critical in determining if there's a way to fight this infection. Since I know some of you worry about me, I will tell you that my mom is coming to stay with me. She's a huge support and source of comfort to me so I'm glad she'll be here.
They don't allow people to stay overnight so I will going home to change my clothes and take a needed shower. I'm sure they'll appreciate that in the ICU.
Dan is still fighting really hard and so am I. The transplant is still scheduled and is still the ultimate goal, so keep visions of that in your thoughts tonight.
Wednesday, January 28, 2009
Neither Dan nor I include much detail in these posts (Dan prefers to leave out the "gory details" since they are quite personal and unnecessary, but I thought I'd give a semi-detailed post today so everyone's on the same page. Here goes:
January 8th was Dan's last day of chemotherapy, but as I mentioned last post, it takes a long time for his blood counts to recover after such a massive dose. Everyone here at Sloan is anxiously awaiting the recovery of his counts, especially the White Blood Cell count, so that Dan's body can start to fight along with the antibiotics. Every day they poke him at least once or twice to take his blood for cultures and to determine where the other levels of the blood are--hemoglobin, platelets, electrolytes, etc. The cultures, which take several days to produce results, determine what, if any, infections are present. The latest fever-producing infection, called Pseudomonas, was negative for a few days but came back again as positive. This means they have to pull out a heavy-duty antibiotic since this bug has become resistant to the last antibiotic.
I can't remember the last time I had a fever--maybe back in the 90s...Dan's had one on and off for many days and it takes its toll in many ways. Since he hasn't been able to swallow much except some ice chips for about 2 weeks, I can also imagine that his body would appreciate some nourishment. (Why they can't feed him intravenously is that the glucose promotes infection...there's always a plus and a minus with every treatment, it seems). As bad as he feels and this all sounds, the doctors are saying he's still doing well for a person in his position...they weren't joking around when they said this part would be rough. They also say that the transplant, which is scheduled but I refuse to write about due to intense superstition, will be a "piece of cake" compared with this part. Maybe more like a piece of cake with shards of glass inside, but I know what they mean.
I hope the next 24 hours will show that the new antibiotic is taking effect. That's where we stand today. It's true what you may have gathered or heard--I do spend most of my time in this hospital room, even sleeping here much of the last two weeks so I can stay on top of Dan's condition and help him out when he needs it. That said, I continue to appreciate your understanding while I communicate minimally with you in the outside world...and I know you are all hoping, praying, and sending good thoughts to us here.
January 8th was Dan's last day of chemotherapy, but as I mentioned last post, it takes a long time for his blood counts to recover after such a massive dose. Everyone here at Sloan is anxiously awaiting the recovery of his counts, especially the White Blood Cell count, so that Dan's body can start to fight along with the antibiotics. Every day they poke him at least once or twice to take his blood for cultures and to determine where the other levels of the blood are--hemoglobin, platelets, electrolytes, etc. The cultures, which take several days to produce results, determine what, if any, infections are present. The latest fever-producing infection, called Pseudomonas, was negative for a few days but came back again as positive. This means they have to pull out a heavy-duty antibiotic since this bug has become resistant to the last antibiotic.
I can't remember the last time I had a fever--maybe back in the 90s...Dan's had one on and off for many days and it takes its toll in many ways. Since he hasn't been able to swallow much except some ice chips for about 2 weeks, I can also imagine that his body would appreciate some nourishment. (Why they can't feed him intravenously is that the glucose promotes infection...there's always a plus and a minus with every treatment, it seems). As bad as he feels and this all sounds, the doctors are saying he's still doing well for a person in his position...they weren't joking around when they said this part would be rough. They also say that the transplant, which is scheduled but I refuse to write about due to intense superstition, will be a "piece of cake" compared with this part. Maybe more like a piece of cake with shards of glass inside, but I know what they mean.
I hope the next 24 hours will show that the new antibiotic is taking effect. That's where we stand today. It's true what you may have gathered or heard--I do spend most of my time in this hospital room, even sleeping here much of the last two weeks so I can stay on top of Dan's condition and help him out when he needs it. That said, I continue to appreciate your understanding while I communicate minimally with you in the outside world...and I know you are all hoping, praying, and sending good thoughts to us here.
Monday, January 26, 2009
Susan again. First, thanks to all of you who wished me a happy birthday via card, email, or Starbucks! I actually did have a great day with my best childhood friend Jill who came to visit NYC for the first time. Of course I also spent much of the day with Dan. The nurses even brought ME a balloon and cup cake...Red Velvet, which you should try if you haven't. They even sang to me...they are the best!
Dan's progress is slow but steady after an exhausting week. To say he's been a trooper is like saying Michael Phelps is a decent swimmer. Everyone involved here at Sloan is hoping for his white blood cell count to appear in the next few days, which would provide some major relief on many fronts. For now he is very sleepy, although each day we go walking a little bit further and more frequently around the floor. He's been receiving multiple platelet and blood transfusions every day since his own bone marrow is still wiped out, but again, all of this is to be expected due to the extremely high doses of chemotherapy he received.
I always loved "The Tortise and the Hare" story when I was a kid...and I always rooted for that tortise...and no matter what the story's edition he always won.
Dan's progress is slow but steady after an exhausting week. To say he's been a trooper is like saying Michael Phelps is a decent swimmer. Everyone involved here at Sloan is hoping for his white blood cell count to appear in the next few days, which would provide some major relief on many fronts. For now he is very sleepy, although each day we go walking a little bit further and more frequently around the floor. He's been receiving multiple platelet and blood transfusions every day since his own bone marrow is still wiped out, but again, all of this is to be expected due to the extremely high doses of chemotherapy he received.
I always loved "The Tortise and the Hare" story when I was a kid...and I always rooted for that tortise...and no matter what the story's edition he always won.
Friday, January 23, 2009
Susan again: just a quick update...time flies and I realize I haven't written anything for a few days.
Dan has had one of the toughest weeks yet but is doing an amazing job of pulling through. I am knocking on wood as I write this (and ask you to do the same), that the infection causing his fevers is under control. Now he just waits with a huge cast of antibiotics until his white blood cell count reappears/recovers. It's been at 0 (re: zero) for over a week as expected after such a huge dose of chemotherapy. We are all waiting for that moment...even 0.1 white blood cells would assist his weary immune system.
It will happen next week...until then, find some wood (or use your head if there's none around) and please keep knocking.
Dan has had one of the toughest weeks yet but is doing an amazing job of pulling through. I am knocking on wood as I write this (and ask you to do the same), that the infection causing his fevers is under control. Now he just waits with a huge cast of antibiotics until his white blood cell count reappears/recovers. It's been at 0 (re: zero) for over a week as expected after such a huge dose of chemotherapy. We are all waiting for that moment...even 0.1 white blood cells would assist his weary immune system.
It will happen next week...until then, find some wood (or use your head if there's none around) and please keep knocking.
Monday, January 19, 2009
A little update from Susan:
Since last he wrote, Dan has experienced a similar level of discomfort from the mucositis (mouth sores), but it is improving and he's figured out a way to tolerate it. The latest challenge has been dealing with persistent fevers. As a side note, thanks to our friend Celsius, the unit of measurement for temperature used here at Sloan, I can now translate temperatures to approximately what they should be in Fahrenheit...one of the many skills I have acquired.
The major event today was the removal of Dan's mediport, the device that's been used to "plug him in" to his various IVs for the past year. Apparently the infection that's causing these fevers feeds off of plastic implants. Their hypothesis is that it's removal will starve that particular bacteria and the antibiotics will be able to do their job since he still has no white blood cell count. Unfortunately, that means that for now Dan will get everything he needs through "peripheral" veins (i.e. the arm or the wrist). Ouch.
If you haven't noticed, I am learning a lot about what nurses and doctors do here at the hospital, as well I should since I certainly spend a lot of time here. A few of you have asked me if it's anything like ER or House, and my answer is, well, not quite. Although I try to provide quick wit and dramatic monologues for the staff, reality is never quite as eloquent or straightforward as TV...but never fear, I am taking notes for next year's role in the latest medical drama.
I will now sign off since this is Dan's blog and he'd never write so much. I am amazed at how many of you keep up with this blog. It means a lot and it helps. Thank you.
Since last he wrote, Dan has experienced a similar level of discomfort from the mucositis (mouth sores), but it is improving and he's figured out a way to tolerate it. The latest challenge has been dealing with persistent fevers. As a side note, thanks to our friend Celsius, the unit of measurement for temperature used here at Sloan, I can now translate temperatures to approximately what they should be in Fahrenheit...one of the many skills I have acquired.
The major event today was the removal of Dan's mediport, the device that's been used to "plug him in" to his various IVs for the past year. Apparently the infection that's causing these fevers feeds off of plastic implants. Their hypothesis is that it's removal will starve that particular bacteria and the antibiotics will be able to do their job since he still has no white blood cell count. Unfortunately, that means that for now Dan will get everything he needs through "peripheral" veins (i.e. the arm or the wrist). Ouch.
If you haven't noticed, I am learning a lot about what nurses and doctors do here at the hospital, as well I should since I certainly spend a lot of time here. A few of you have asked me if it's anything like ER or House, and my answer is, well, not quite. Although I try to provide quick wit and dramatic monologues for the staff, reality is never quite as eloquent or straightforward as TV...but never fear, I am taking notes for next year's role in the latest medical drama.
I will now sign off since this is Dan's blog and he'd never write so much. I am amazed at how many of you keep up with this blog. It means a lot and it helps. Thank you.
Thursday, January 15, 2009
Cancer is a disease of extremes. I was feeling extremely well on Tuesday and extremely unwell by Wednesday. I am suffering from severe mouth and throat sores but should recover within 2 weeks. This is all due to the high doses of chemotherapy that finished last week and is not abnormal but is extremely painful.
In the meantime, Susan's birthday is January 24th so send her a Starbucks card.
That's all for now, Dan.
In the meantime, Susan's birthday is January 24th so send her a Starbucks card.
That's all for now, Dan.
Monday, January 12, 2009
Sunday, January 11, 2009
Hi-Dan here again. Plan D of chemo is done, and I am in recovery until early Feb. Assuming all goes well, I will move directly into the transplant. There are still several people lined up and ready to donate when the time comes. I have been feeling much better over the past couple of days, but as always, I tread a fine line. I am fortunate to have a single room right now, so there are no roommate considerations I have to think about. No more cowering in the corner with my urinal.
Thanks to all the recent visitors and well-wishers, and I hope everyone has been enjoying the snow.
Thanks to all the recent visitors and well-wishers, and I hope everyone has been enjoying the snow.
Tuesday, January 6, 2009
Hi, it's Susan here again.
I'm back for a blog post after a busy week of organization, family visits, and the start of Dan's latest treatment. First, though, thank you to my friend Meret for taking the reigns and acting as our visit scheduler during this time. It's something I didn't realize I needed but did, especially when the latest news came so suddenly and the treatment started sooner than expected.
.
So here's what Dan just said: "Cytoxan is no joke". Cytoxan (the name says it all) is the second of the two chemotherapy drugs he'll be getting over his 6 days of treatment. He's had it before in combination with different drugs so he knows its effects, but this time we're going to think of it as a friendly poison, a chemical ninja warrior going into battle against the leukemia cells. I got a little New-Agey on him and suggested this visualization. Here are some of my thoughts.
I know how much you all want to DO something for Dan, and you have through your cards, visits, positive thoughts, prayers, etc. But I have a new request based on concepts I've been thinking about lately...to not only send good and positive thoughts, but embody those thoughts; raise your own spirits. By doing so I believe you make an automatic difference wherever you are. Plus, when the opportunity arises again to visit Dan, you will be in the best state possible to share yourself with him.
So...I hope I or Meret will be able to set up visits again soon. Dan said again today that he likes people to visit but wants the option to say no. In the meantime, I have to pack up my crystals and magic 8-ball, so I'll sign off for now.
I'm back for a blog post after a busy week of organization, family visits, and the start of Dan's latest treatment. First, though, thank you to my friend Meret for taking the reigns and acting as our visit scheduler during this time. It's something I didn't realize I needed but did, especially when the latest news came so suddenly and the treatment started sooner than expected.
.
So here's what Dan just said: "Cytoxan is no joke". Cytoxan (the name says it all) is the second of the two chemotherapy drugs he'll be getting over his 6 days of treatment. He's had it before in combination with different drugs so he knows its effects, but this time we're going to think of it as a friendly poison, a chemical ninja warrior going into battle against the leukemia cells. I got a little New-Agey on him and suggested this visualization. Here are some of my thoughts.
I know how much you all want to DO something for Dan, and you have through your cards, visits, positive thoughts, prayers, etc. But I have a new request based on concepts I've been thinking about lately...to not only send good and positive thoughts, but embody those thoughts; raise your own spirits. By doing so I believe you make an automatic difference wherever you are. Plus, when the opportunity arises again to visit Dan, you will be in the best state possible to share yourself with him.
So...I hope I or Meret will be able to set up visits again soon. Dan said again today that he likes people to visit but wants the option to say no. In the meantime, I have to pack up my crystals and magic 8-ball, so I'll sign off for now.
Monday, January 5, 2009
Meret here. Just a brief update about visitors. Susan wrote
"It seemed like a good idea when he wasn't getting the chemo yet to have visitors, but the game really has changed. We'll have to see how it goes tomorrow, but as of tonight [Monday] he told me that too many visitors in a week is overwhelming....he can handle the ones he has [already scheduled], but no more for this week. I know it sounds like a total change and it is, but the way he feels turns on a dime. We love these people, but since the sole purpose is to raise his spirits and make him feel good, it won't if he's not up for it."
"It seemed like a good idea when he wasn't getting the chemo yet to have visitors, but the game really has changed. We'll have to see how it goes tomorrow, but as of tonight [Monday] he told me that too many visitors in a week is overwhelming....he can handle the ones he has [already scheduled], but no more for this week. I know it sounds like a total change and it is, but the way he feels turns on a dime. We love these people, but since the sole purpose is to raise his spirits and make him feel good, it won't if he's not up for it."
She also regretted that she isn't interacting with everyone individually but said "If I spend all of my time with my head in my Blackberry, I'm going to miss the time I need to be present with Dan."
For now, since visits are out, perhaps the best way to show support is to be old-fashioned and write notes and cards for Dan to have in his room. Anyone who's YouTube-production friendly could also post a short (30 seconds or less) video saying hi. It does him good to know we're rooting for him, but this treatment seems to be coming down pretty hard.
When I have a bit more health news, I'll post it. In the meantime, thanks for all the offers to visit.
Saturday, January 3, 2009
Meret here, Saturday night. I just got the following from Susan.
"We got word that the chemo would be starting tonight and it did show up about an hour ago, so things have begun. I was also surprised that it would start today, but they don't see any reason to wait since everything else looks good. He is also starting to have some intense bone pain, which, if it's the same as before, is a sign of the leukemia. It's actually painful in his bones and a lot in his teeth. He's on pain medication now constantly, and they are also hoping it will go away with the chemo. There are several humongous bags over the next 6 days...he's getting an incredible amount of fluid to continuously flush his system so he has to be careful of his blood pressure changing too fast...Our friends visited today and were great about kicking themselves out, though Dan kept talking to them for a while...but I was so happy with that visit. He was laughing and they were laughing...it was really helpful, I think. He went to sleep right after that, but it really raised his spirits. I could see it."
Susan went on to say that she thought Dan would like to see folks he hasn't seen for awhile, so if anyone has been thinking about visiting, perhaps now is the time. She mentioned that the "five-minute visit" rule was great, because it lets Dan rest if he's tired. I don't know how the chemo and the pain meds will affect things, but as long as everyone is sensitive to the fact that there's no predicting what the situation will be for any given visit, I think we should keep the visits coming.
If you can't come, please send your thoughts the old fashioned way--via snail mail, to their home. Susan will bring cards and letters to the hospital. They are a tangible reminder that we're thinking of Dan (and Susan) so mail early and often.
"We got word that the chemo would be starting tonight and it did show up about an hour ago, so things have begun. I was also surprised that it would start today, but they don't see any reason to wait since everything else looks good. He is also starting to have some intense bone pain, which, if it's the same as before, is a sign of the leukemia. It's actually painful in his bones and a lot in his teeth. He's on pain medication now constantly, and they are also hoping it will go away with the chemo. There are several humongous bags over the next 6 days...he's getting an incredible amount of fluid to continuously flush his system so he has to be careful of his blood pressure changing too fast...Our friends visited today and were great about kicking themselves out, though Dan kept talking to them for a while...but I was so happy with that visit. He was laughing and they were laughing...it was really helpful, I think. He went to sleep right after that, but it really raised his spirits. I could see it."
Susan went on to say that she thought Dan would like to see folks he hasn't seen for awhile, so if anyone has been thinking about visiting, perhaps now is the time. She mentioned that the "five-minute visit" rule was great, because it lets Dan rest if he's tired. I don't know how the chemo and the pain meds will affect things, but as long as everyone is sensitive to the fact that there's no predicting what the situation will be for any given visit, I think we should keep the visits coming.
If you can't come, please send your thoughts the old fashioned way--via snail mail, to their home. Susan will bring cards and letters to the hospital. They are a tangible reminder that we're thinking of Dan (and Susan) so mail early and often.
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