My apologies upfront for those checking the blog, your interest and support are great and I feel terrible that I have not kept things as updated as intended. There has been a lot going on and I will try to provide the latest.
Christmas was hard on Chris. Not physically, but emotionally. She loves the holiday and to her it represents the best family time of the year. So while she was thrilled to have everyone home, she was worried how many more of these she would have. She was switching between the joy of having everyone around with the fear of the future. It was the most negative and depressed I had seen her in months. We had my entire family as well as her parents over for Christmas Eve (23 people) and she worked her tail off to make it happen. It was fantastic and she pulled it all off. I played a surprise Santa for the neighbors next door (they did not even know it was me for a long time) and we all had a good laugh. Yet when it came time to go the midnight service at Church, she was too exhausted to go. She loves this candlelight service and it really puts the holiday into perspective for us all. But we went without her on her urging and returned home to her being very upset and depressed. It was the lowest I had seen her since July. I know that holidays can be extremely tough on people, and Chris wanted hers to be perfect. Yet I completely miscalculated how difficult it was on her emotionally. She was so tired, and had such conflicting emotions around the family all being there while being so scared of the future. It was a tough night for her and I blame myself for not preventing this. A lesson learned.
Christmas morning was fun and Chris did well. We opened stockings and presents and had a good breakfast with a very beautiful white snow outside. She seemed to have lost her sadness and was glad that her parents spent the night. We then went to my sisters for dinner. It was a blast (she knows how to hold a party!). The dinner was great, my Aunt joined us as well (so now 24 people) and the food was fantastic. Chris enjoyed it and really had a great time. Yet, she did not join the "dance party" where the adults and the teenagers went into a big time party mode. We had the music cranked and the place was jumping. What a blast. Chris never has been much of a dancer, but it would have been nice to see her rocking out. So Christmas Day was a very good one after a tough Christmas Eve.
The following Saturday (the 27th) was Chris' birthday. We all were up at her parents in NH and all of her siblings (Tim, Sally, and Debbie) made it up from NJ and PA to help her celebrate along with all but one niece/nephew (who was in Denver). She had a good time, a good dinner, and received some nice gifts. Again, I think this may have been a bit tough emotionally as well, as these milestones often cause one to think about the future.
Today, 12/31, we had the long awaited meeting with Dr. Falk - the cardiologist in Boston. Despite 8 inches of snow here, we made it in. Chris did the stress test that she did poorly on a month earlier. This one went much better. We then met with him and discussed the results - briefly. To make it simple, and to reconfirm my now strengthening hypothesis - Medicine is an art, not a science. We took Dr Falk through the BU results from early December and basically he dismissed them saying it was not possible to see such a reduction in the Ejection Fraction. The BU cardiologist had it at 25%, and today we heard "not possible". In fact, he was very upbeat, saying that based on her stress test results and his clinical observation, she was doing very well. He gave her the green light to start yoga, continue daily moderate exercise, and potentially start an even more aggressive exercise routine. We clearly have conflicting results from two different doctors. This is very frustrating, and of course we believe the more positive results. He wants us to have BU send the actual CD (not just the report) to him so he can see them directly. As I have stated earlier, I am not sure how doctors in different organizations work together, but when I see them dismiss anothers perspective, it is very disconcerting. We have to make our own decisions as to whom we believe and who's direction we follow. Clearly an art, not a science.
We will have the actual data sent from BU to Dr Falk and we will meet with him in 3 weeks - Jan 22nd to be exact.
So we walked out of the office today feeling very positive. We asked about the potential for a second stem cell transplant/high dose chemo OR the oral chemo. He said he would wait for the March 3 day analysis to give us his perspective.
So to wrap up the year, it has been a hell of a ride. Chris started what we thought would be a normal year last January, in April we heard the word Amyloidosis for the first time, in May she was confirmed with it, in June she had all her stem cells in her body removed and was given an almost lethal dose of poison (chemo), and in July she returned home 30 pounds lighter, no hair, no immune system, no strength, and in a distant stupor. She sat listless, never smiled, never did anything on her own, and watched life go by. Yet, she has worked relentlessly to get herself back to a normal life. She walks daily, is very independent, and actually yells at me like the good old days. I can't believe I am saying this, but it is so great to here her say "Steve, stop that" or "slow down" or "fix this". Of course she usually says it nicely, but I will take it any way she gives it. Chris has also seen both friends and fellow sufferers pass away from this terrible disease. It scares the daylights out of us, and in fact sets us way back emotionally after we work so hard to rebuild our confidence and optimism.
But now, on the last day of December of 2008, we end the year very optimistic. Chris told the doctor today feels better now than she did a year ago. That is progress, that is medicine, that is the power of prayer, that is the result of hundreds of well wishers all genuinely caring about Chris. She has reconnected with old friends, she has experienced more love than she ever thought possible, she has leaned on many people and they have supported her and she has verified that her family and friends are the most valuable people in the world.
For me, I have learned more than I thought possible. I have learned about blood disease, about medicine, about hospital practices, about how doctors think, about clinical trials, support groups, drug research, mortality rates, bio-markers, and how the human body rejects the poison of chemo by attempting to force it flying out of all ends of the body. And I have learned how to clean that up after that as well. But more important than the medical side of things, I have learned an amazing amount about the human side of this. I have seen what complete fear of death looks like, I have seen how a community has given all they possibly can to help a friend in need, I have seen a sibling give up months with her own family to take care of ours, I have seen my colleagues at IBM offer their help and support, and I have seen a very brave and strong woman fight a killer disease like a prizefighter. She may get knocked down, but she gets right back up again and goes the next round. She is amazing.
I have owed my Top 10 lessons learned for months now. I think I first promised back in July. My hope is to write those this coming weekend. I pray nobody ever has to go through what we have been through, but there has been a great deal of learning and I owe it to everyone to share.
I wish you all a very Happy New Year. Drink a toast to both Chris and yourselves as you usher in the new year. I will drink a toast to all of you!!!
And again, my apologies for my delayed posts. I know how many people check it regularly.
Wednesday, December 31, 2008
Sunday, December 21, 2008
Very Tough Week - Physically and Emotionally
The week before Christmas has been a pretty difficult one for Chris unfortunately. She has had two bumps in the road - yet remains stalwart. Actually to call them bumps in the road minmmizes them - let's call them detours.
Wednesday was my third day down in NY attending some very tough meetings. I had flown down early Monday for 4 days of meetings while Chris and Stephen remained home. All was going very well so Stephen left Wednesday afternoon to go to Maine skiing with friends. At about 10:30 PM while I was dragging myself to bed after a very long day, my phone rang. It was Chris. She was breaking out in hives with rash across her body, her lips swelling, incredible itching, etc. This came on relatively suddenly. She called a friend who had been giving her some shots - the blood thinner coumadin. As a nurse, her friend has been very helpful as Chris hates needles (imagine the hundreds and hundreds of injections she has had this year). Her friend suggested she take some benadryl and call the doctor. Of course we had none in the house ( bad luck on our side ) so a scramble of calls started in the neighborhood and some was found (good luck except for those getting phone calls late at night). Her doctor called her back and said, "get to the ER - STAT". So without hesitation, our great friend Sally said "grab a coat, lets go". No kids were home, I was not home, and here is Chris heading to the ER at 11:00 at night. I won't bore you with the details, but Chris has had a very severe reaction to ==> we have no idea! 3 days letter, she is still breaking out with a very ugly rash across her torso, on her neck, under her arms. Big, red, raised welts. The ER treated the symptoms (prednisone, more benadryl), but did not identify the root cause.
This could have been caused by the coumadine, it may have been due to a new pill (same prescription, just different manufacturer) she started to take, possibly a couple of injections she needed prior to the coumadin, or even that Pad Thai she had for lunch. She got back to the house just before 3:00 AM and Sally spent the night in case of any further problems. Here is Sally getting into her own bed and 5 hours later she is getting back from the ER to sleep in another house. She was amazing - as she always is. I was pretty much useless other than irritating phone calls to Chris as she spoke to the ER physician. For so many months I have been her caregiver and medical advocate and here I was 200 miles away in NY - not a position I like being in.
So she is still suffering from the rash. She woke up Saturday morning with it all over her, wanting to itch everywhere, literally jumping up and down wanting to get out of her own skin. Large doses of benadryl and the prednisone help, but if we don't stay on top of it, she breaks out really badly. This all of course has just added to her frustration. As we drove to Burlington VT to pick up Melissa at the end of her semester, her frustration really showed. She is "so sick of being sick". "Why is this happening to me?", etc. I know well when she is on the verge of wanting to just breakdown and let it all out, but she allows herself to complain, maybe a tear or two, and she pulls herself together. She is a rock.
We will continue to look for the cause of the reaction. We have been in contact with her primary doctor, her cardiologist, and Boston center and they are working together to determine the next steps. In the meantime she is not taking any coumadin (or pad thai for that matter).
So Saturday, Chris and I drove to Burlington in the snow to move Melissa out of her house (in preparation to a semester in Australia starting next month). It was a very long day with about 6 hours of driving in the snow, packing her up, etc. We got home later than expected, yet ran to a party we had RSVP'd to earlier. We got there late and stayed relatively late. Upon our return home, she checked her mail before going to bed. This is the emotional detour, or crash I could say. As I have mentioned in earlier posts, Chris has been reading other peoples blogs who suffer from this terrible disease (yet still does not want to read this one). She reads the updates, prays for them, we talk about the differences with her care and their unique situations they all are going through. With me, she calls them by their first name, although she has never met them. "Paul had a good day today, Kevin is getting his heart transplant". The one blog she has been following since early fall has been a man in NY (Paul) with 2 young kids who went through the stem cell transplant and high dose chemo a few weeks after her. His wife and caregiver has been faithfully documenting his journey and Chris has felt very attached to the story (and Paul). He went home, she was thrilled, he had dialysis and she felt bad for him. Chris read yesterdays update and it threw her and I an unexpected shot to the head - Paul died of cardiac failure that morning. Two boys, 3 years old and 9 months old, a young wife who had been his caregiver, advocate, emotional support, etc. are left behind. They fought this battle as Chris has, with fortitude, optimism, many many tough periods, and with an incredible determination to beat this and get back to a normal life. Chris is devastated. Such a long, difficult, yet courageous battle only to have lost it in the end. Chris is scared, angry, confused, and very very sad for the family. This has thrown me for a loop as well, a big loop, as it brings the reality home. I can't share my emotions with Chris when she needs strength to lean on, but damn. DAMN THIS THING!
If you want to read a very tough story, here is Pauls blog:
http://gettingpaulhealthy.blogspot.com/2008/12/very-sad-day-indeed.html
Chris and I will get our act together and face the holidays with the joy of the season. We will have my entire family together and see almost all of hers in the next week or so. She has had a hell of a week, but she will do great. Keep praying for her. I'll give another update before Christmas.
Wednesday was my third day down in NY attending some very tough meetings. I had flown down early Monday for 4 days of meetings while Chris and Stephen remained home. All was going very well so Stephen left Wednesday afternoon to go to Maine skiing with friends. At about 10:30 PM while I was dragging myself to bed after a very long day, my phone rang. It was Chris. She was breaking out in hives with rash across her body, her lips swelling, incredible itching, etc. This came on relatively suddenly. She called a friend who had been giving her some shots - the blood thinner coumadin. As a nurse, her friend has been very helpful as Chris hates needles (imagine the hundreds and hundreds of injections she has had this year). Her friend suggested she take some benadryl and call the doctor. Of course we had none in the house ( bad luck on our side ) so a scramble of calls started in the neighborhood and some was found (good luck except for those getting phone calls late at night). Her doctor called her back and said, "get to the ER - STAT". So without hesitation, our great friend Sally said "grab a coat, lets go". No kids were home, I was not home, and here is Chris heading to the ER at 11:00 at night. I won't bore you with the details, but Chris has had a very severe reaction to ==> we have no idea! 3 days letter, she is still breaking out with a very ugly rash across her torso, on her neck, under her arms. Big, red, raised welts. The ER treated the symptoms (prednisone, more benadryl), but did not identify the root cause.
This could have been caused by the coumadine, it may have been due to a new pill (same prescription, just different manufacturer) she started to take, possibly a couple of injections she needed prior to the coumadin, or even that Pad Thai she had for lunch. She got back to the house just before 3:00 AM and Sally spent the night in case of any further problems. Here is Sally getting into her own bed and 5 hours later she is getting back from the ER to sleep in another house. She was amazing - as she always is. I was pretty much useless other than irritating phone calls to Chris as she spoke to the ER physician. For so many months I have been her caregiver and medical advocate and here I was 200 miles away in NY - not a position I like being in.
So she is still suffering from the rash. She woke up Saturday morning with it all over her, wanting to itch everywhere, literally jumping up and down wanting to get out of her own skin. Large doses of benadryl and the prednisone help, but if we don't stay on top of it, she breaks out really badly. This all of course has just added to her frustration. As we drove to Burlington VT to pick up Melissa at the end of her semester, her frustration really showed. She is "so sick of being sick". "Why is this happening to me?", etc. I know well when she is on the verge of wanting to just breakdown and let it all out, but she allows herself to complain, maybe a tear or two, and she pulls herself together. She is a rock.
We will continue to look for the cause of the reaction. We have been in contact with her primary doctor, her cardiologist, and Boston center and they are working together to determine the next steps. In the meantime she is not taking any coumadin (or pad thai for that matter).
So Saturday, Chris and I drove to Burlington in the snow to move Melissa out of her house (in preparation to a semester in Australia starting next month). It was a very long day with about 6 hours of driving in the snow, packing her up, etc. We got home later than expected, yet ran to a party we had RSVP'd to earlier. We got there late and stayed relatively late. Upon our return home, she checked her mail before going to bed. This is the emotional detour, or crash I could say. As I have mentioned in earlier posts, Chris has been reading other peoples blogs who suffer from this terrible disease (yet still does not want to read this one). She reads the updates, prays for them, we talk about the differences with her care and their unique situations they all are going through. With me, she calls them by their first name, although she has never met them. "Paul had a good day today, Kevin is getting his heart transplant". The one blog she has been following since early fall has been a man in NY (Paul) with 2 young kids who went through the stem cell transplant and high dose chemo a few weeks after her. His wife and caregiver has been faithfully documenting his journey and Chris has felt very attached to the story (and Paul). He went home, she was thrilled, he had dialysis and she felt bad for him. Chris read yesterdays update and it threw her and I an unexpected shot to the head - Paul died of cardiac failure that morning. Two boys, 3 years old and 9 months old, a young wife who had been his caregiver, advocate, emotional support, etc. are left behind. They fought this battle as Chris has, with fortitude, optimism, many many tough periods, and with an incredible determination to beat this and get back to a normal life. Chris is devastated. Such a long, difficult, yet courageous battle only to have lost it in the end. Chris is scared, angry, confused, and very very sad for the family. This has thrown me for a loop as well, a big loop, as it brings the reality home. I can't share my emotions with Chris when she needs strength to lean on, but damn. DAMN THIS THING!
If you want to read a very tough story, here is Pauls blog:
http://gettingpaulhealthy.blogspot.com/2008/12/very-sad-day-indeed.html
Chris and I will get our act together and face the holidays with the joy of the season. We will have my entire family together and see almost all of hers in the next week or so. She has had a hell of a week, but she will do great. Keep praying for her. I'll give another update before Christmas.
Saturday, December 13, 2008
Mixed News - as predicted
We heard from the doctors at Boston yesterday afternoon and it is not great news but more importantly it is not terrible news. In the end, it is progress, but will require us to continue the fight as it is not over. The results are what we actually had been predicting, as we are now smart enough to read the test results, ask the right questions, and know the options as the various meetings with doctors occur. I don't need to wait for a big report when I know the individual elements themselves. So, what I will describe is what we knew for the most part.
Lambda light chains: Normal is a number of 5-26. Chris it turns out was over 700 at one point and 660 when first diagnosed. She is now down to 39, and this represents a drop of 94% or so, but unfortunately still above 26. This means the amyloid proteins are still being produced, albeit at a significantly reduced rate. A 94% response is a long way there, but not across the finish line.
Plasma Cells in her bone marrow: Normal under 5%, Chris was over 10%. Now after the high dose chemo, she is back to under 5%. This is very good.
Serum IFE (immunoglubulin): This was down to zero, a very good story.
Flight Light Chain Ratio (Kappa/Lambda): Normal is .2-1.6. Chris is at .2, again very good.
So she still has the lambda free light chains being produced, but the biomarkers are all looking very good.
Cardio: Here is the difficult part, for both the doctors and for us. They cannot explain why the hematologic response has been so good while there continues to be further damage to her heart. We just got the analysis from the TEE (the echo through her esophagus) and it shows "severe left atrium enlargement", and "the right atrium is severely dilated". Further, there is "moderate to severe mitral regurgitation." They show an ejection fraction of 20%-25%, where normal is over 50%. Thus, as stated in earlier posts, our focus now shifts from the blood to the heart. We fully expect that there will be more work to do on the amyloidosis, as we need to stop the continued protein depostion, BUT, job #1 is now to understand and execute a plan that protects the heart. So the next activity is to meet with the Dr. Falk on December 31.
For those of you interested and looking for some technical and potentially mind-numbing/sleep inducing reading, here is a great paper written by Dr. Falk:
http://circ.ahajournals.org/cgi/reprint/112/13/2047.pdf .
I suggest only the very curious spend the time to print and read this, but it gives a detailed overview of the new battle front.
So enough of the technical stuff, lets talk about the most important element, Chris herself. Overall, she is doing very well emotionally and physically. She has been on the treadmill every day - this is her full time job, to ensure she is in top physical condition with the constraints she has. She has been very active, decorating the house, going to parties around town, shopping, etc. Outwardly, you would see little difference than the Chris you would have seen a year or two ago, except about 20 pounds lighter (she is up to a whopping 109) and very, very short hair (which is really starting to come back). She is upbeat, she is active, she is feeling good. However, there are times when we are both in the dump a bit. The worst time is late at night, when the mind has time to think a bit more. We both worry, about the future, about implications, about options, and about whether there is more we can be doing. I personally continue to ask myself; what else could we be doing? Are we missing a test? Are there better doctors to talk to? Am I prepared for all situations and outcomes? I hope so, but who knows for sure.
Overall, we are very fortunate. I can tell you when I first heard the word "amyloidosis" on Friday April 4th while touring Hartwick College with Abby, I had no idea what it is. Since then, Chris has had a stem cell transplant with high dose chemo, been "as close to hell as you can get and still being able to come back". returned home, and is living an active life. Melissa has written papers and made presentations on Amyloidosis at college, Abby has been an amazing help, cheerleader and supporter to Chris, and Stephen announced last week that for his required Senior Project at Worcester Academy, that he will be raising money for Amyloidosis research by riding from Florida to Holliston during his 2 week spring break - 1200 miles (more on that in future posts). So our family has been great. Yet, the most amazing thing has been what has occurred outside the family (which I know I state too often). Never ever, in my wildest dreams, did I ever expect a community to come together and help a friend like people have for Chris. It is the most amazing thing to see. Beyond anything I can describe. From the smallest things like a phone call to ask her how she is doing, to cards, to daily walks (sometimes in the rain and late at night in the neighborhood), the brownies, sauces, soups, meals, the errands, the interest, the listening, the learning, and most importantly the prayers and positive thoughts. It is beyond belief. There are no words strong enough or big enough to thank Chris' sister giving up her entire summer with her family to watch our family. I can't describe the incredible strength Chris has had in this fight, and I can't begin to express how optimistic I am for our future. We are going to fight two battles now (heart and blood), but I know the alignment of my tough wife, our amazing support (all of you), and the best medical care in the world will end up with success.
I'll try to update the blog occasionally over the next few weeks, and will provide a complete report after the meeting with Dr. Falk. Thanks for your continued interest.
Lambda light chains: Normal is a number of 5-26. Chris it turns out was over 700 at one point and 660 when first diagnosed. She is now down to 39, and this represents a drop of 94% or so, but unfortunately still above 26. This means the amyloid proteins are still being produced, albeit at a significantly reduced rate. A 94% response is a long way there, but not across the finish line.
Plasma Cells in her bone marrow: Normal under 5%, Chris was over 10%. Now after the high dose chemo, she is back to under 5%. This is very good.
Serum IFE (immunoglubulin): This was down to zero, a very good story.
Flight Light Chain Ratio (Kappa/Lambda): Normal is .2-1.6. Chris is at .2, again very good.
So she still has the lambda free light chains being produced, but the biomarkers are all looking very good.
Cardio: Here is the difficult part, for both the doctors and for us. They cannot explain why the hematologic response has been so good while there continues to be further damage to her heart. We just got the analysis from the TEE (the echo through her esophagus) and it shows "severe left atrium enlargement", and "the right atrium is severely dilated". Further, there is "moderate to severe mitral regurgitation." They show an ejection fraction of 20%-25%, where normal is over 50%. Thus, as stated in earlier posts, our focus now shifts from the blood to the heart. We fully expect that there will be more work to do on the amyloidosis, as we need to stop the continued protein depostion, BUT, job #1 is now to understand and execute a plan that protects the heart. So the next activity is to meet with the Dr. Falk on December 31.
For those of you interested and looking for some technical and potentially mind-numbing/sleep inducing reading, here is a great paper written by Dr. Falk:
http://circ.ahajournals.org/cgi/reprint/112/13/2047.pdf .
I suggest only the very curious spend the time to print and read this, but it gives a detailed overview of the new battle front.
So enough of the technical stuff, lets talk about the most important element, Chris herself. Overall, she is doing very well emotionally and physically. She has been on the treadmill every day - this is her full time job, to ensure she is in top physical condition with the constraints she has. She has been very active, decorating the house, going to parties around town, shopping, etc. Outwardly, you would see little difference than the Chris you would have seen a year or two ago, except about 20 pounds lighter (she is up to a whopping 109) and very, very short hair (which is really starting to come back). She is upbeat, she is active, she is feeling good. However, there are times when we are both in the dump a bit. The worst time is late at night, when the mind has time to think a bit more. We both worry, about the future, about implications, about options, and about whether there is more we can be doing. I personally continue to ask myself; what else could we be doing? Are we missing a test? Are there better doctors to talk to? Am I prepared for all situations and outcomes? I hope so, but who knows for sure.
Overall, we are very fortunate. I can tell you when I first heard the word "amyloidosis" on Friday April 4th while touring Hartwick College with Abby, I had no idea what it is. Since then, Chris has had a stem cell transplant with high dose chemo, been "as close to hell as you can get and still being able to come back". returned home, and is living an active life. Melissa has written papers and made presentations on Amyloidosis at college, Abby has been an amazing help, cheerleader and supporter to Chris, and Stephen announced last week that for his required Senior Project at Worcester Academy, that he will be raising money for Amyloidosis research by riding from Florida to Holliston during his 2 week spring break - 1200 miles (more on that in future posts). So our family has been great. Yet, the most amazing thing has been what has occurred outside the family (which I know I state too often). Never ever, in my wildest dreams, did I ever expect a community to come together and help a friend like people have for Chris. It is the most amazing thing to see. Beyond anything I can describe. From the smallest things like a phone call to ask her how she is doing, to cards, to daily walks (sometimes in the rain and late at night in the neighborhood), the brownies, sauces, soups, meals, the errands, the interest, the listening, the learning, and most importantly the prayers and positive thoughts. It is beyond belief. There are no words strong enough or big enough to thank Chris' sister giving up her entire summer with her family to watch our family. I can't describe the incredible strength Chris has had in this fight, and I can't begin to express how optimistic I am for our future. We are going to fight two battles now (heart and blood), but I know the alignment of my tough wife, our amazing support (all of you), and the best medical care in the world will end up with success.
I'll try to update the blog occasionally over the next few weeks, and will provide a complete report after the meeting with Dr. Falk. Thanks for your continued interest.
Thursday, December 11, 2008
Waiting for Godot (really Sanchorawala)
Chris has been very busy today and not had much time to be idle and thinking. That is a good thing. We are waiting for the big call from the medical center tomorrow afternoon where they will tell us what the indicators are for the degree of response. I know hundreds of people are waiting for the big HCR to be claimed, but based on some of the results, while I do not think we are there, I think we are close. The question I have been asked frequently, and a good one is: "At one point do they claim victory?" Is 95% close enough? Is 98%? The answer is pretty binary as I understand it. Your either have a complete response or you don't. If your body is still producing the amyloid proteins ( and as you know, this means the lambda free light chains), then we have to stop the production and the resulting deposition of them in the organs. More proteins mean more damage, and thus there is still work to be done.
My best guess is that they are going to say - "we are pleased, there is a good response, enjoy the holidays, come back in January and we'll retest and decide the action plan then".
As I thought a bit more last night about how to describe Chris' status, I would break it down into two areas: 1) Hematologically things are really looking good. 2) Cardiologically (a new word I just invented I think), things are OK but need a great deal of attention. I remain positive that if we can stop further heart damage, then Chris can move forward with a great and active (but not too active) lifestyle. Her positive attitude will make a huge difference going forward.
Chris did sleep very well last night. She has carried such a tremendous burden of stress that I know she felt as though she completed a major milestone yesterday. As she slept soundly this morning, I swear there was a smile on her face. This meant the world to me.
More tomorrow night or maybe early Saturday morning. I cannot say it enough - Thanks to all of you who care so much.
My best guess is that they are going to say - "we are pleased, there is a good response, enjoy the holidays, come back in January and we'll retest and decide the action plan then".
As I thought a bit more last night about how to describe Chris' status, I would break it down into two areas: 1) Hematologically things are really looking good. 2) Cardiologically (a new word I just invented I think), things are OK but need a great deal of attention. I remain positive that if we can stop further heart damage, then Chris can move forward with a great and active (but not too active) lifestyle. Her positive attitude will make a huge difference going forward.
Chris did sleep very well last night. She has carried such a tremendous burden of stress that I know she felt as though she completed a major milestone yesterday. As she slept soundly this morning, I swear there was a smile on her face. This meant the world to me.
More tomorrow night or maybe early Saturday morning. I cannot say it enough - Thanks to all of you who care so much.
Wednesday, December 10, 2008
Return Visit - Day 3
OK, a deep breath so I can think how to best make this understandable. Bottom line is two key messages: 1) all the test are not in yet, 2) the tests that are in show very mixed and confusing indications/results. Let me start with the bad and finish with the good.
Chris has a serious heart problem that has become worse since the spring. The number one issue, amongst many, is a significantly reduced ejection faction (EF). In simple terms, ejection faction is the % of blood pumped out of the heart with each heart beat. Normally this is in the range of 55% to 58%. In May, Chris' EF was 49%, not too bad. Today it is 35%. This has clearly worsened over the year. This is not due to the Chemo, but amyloid damage. This reduced EF is a symptom of the hardening of the left ventricle wall, which with reduced muscle elasticity has less ability to pump efficiently. There may also be some valve leakage between the atrium and the ventricle. What this all means is that Chris continues to have congestive heart failure. However, do not let the term 'failure' scare you as it did me. Failure in this case means that the heart is just not pumping at normal rates, so failure does not mean stoppage, it means reduction. The reduction in the pumping means that as her body calls for more oxygen as she exercises, climbs stairs, whatever, she will not be able to keep up with the demand. She would become easily fatigued, out of breath, and maybe have chest pounding. The cardiac story is not a good one, but she can function with normal activity and if the damage stops where it is, she can live a normal life while being careful. Nobody knows what further heart damage will occur going forward. I asked the question a hundred times, but nobody knows.
We see Dr. Falk (the most knowledgeable cardiologist in the world on this) again on December 31st. He now becomes an even bigger part of the game plan going forward since heart involvement becomes the single biggest issue we face.
OK, so now the better news. The other organs all are doing well, in fact her kidneys, which were problem number two after the heart, has actually improved since the chemo. There are a potpourri of blood and urine tests to measure kidney effectiveness. Almost all of these came back with improved results. Her kidneys are doing what they are supposed to be doing, they are seeing less amyloid proteins then they did before, and they are flushing them from the body better than before. One of the key tests is the amount of protein collected in a 24 hour urine sample (Chris hates carrying the jug around, but has now become a pro at it). Her Mg/24 hours were over 4000 in May, now they are about 2800, so this is a big drop and indicates a downward trend. But, to put it in perspective, normal is about 150 Mg/24 hours. As they explained it all today, the reduction will take as long as two years. I of course asked where we were on the reduction curve, ahead or behind what they would have expected for a good response and they said "6 months ahead of the curve". Obviously that is good.
The other key metric is the amount of lambda free light chains. Before, Chris was 660. Today she was 39. This is the single best news we have heard. This is a direct result of the chemo and indicates that the free light chain proteins that are created by her plasma cells and are floating around, combining and becoming insoluble in her organs have reduced considerably. This is about 94% reduction. Better than no reduction, better than 50% reduction, and better than 93% reduction. BUT, not a complete reduction. Normal is 15 -26. There are 4 elements that make up the criteria for a hematologic complete response (the famous HCR). Getting down to 26 or lower is one of them. The others are the Bone Marrow plasma cells at under 5% (she was at 10% in May), a Kappa/Lambda ratio between .26 and 1.65 and a good serum Immunofixation (IFE) test (too hard to explain here). The only test data we have at this point is the amount of lambda free light chains, and that is very good. The others we will get on Friday.
So now, the big question: Did we get a complete response? the answer is we do not yet know. We probably need to wait another month to see if the lambda's continue to reduce. To be honest, based on the discussions today, it is not clear if a complete response is possible. I seems to be unlikely at this point. The next big question is: what if it isn't complete response, now what?
Four options:
1) A second stem cell replant with high dose chemo (all over again), probably next spring/summer
2) An oral chemo, using a drug in trial called Revlimid
3) an oral chemo, using a drug in trial called Velcade
4) do nothing and watch.
Chris and I were very clear (more me than her) - we want to continue to be very aggressive. If they heard one word today it was "aggressive". Chris survived the pure hell of the high dose chemo this past year, and will do it again if its poison (and that is what it is) kills the rest of the bad plasma cells creating the proteins.
So here is the bottom line:
Chris has very bad heart damage, which we are seeking world class medical help to address. She will most likely be placed on an anticoagulant to prevent clots in her heart from causing a stroke.
The test results from this week are not all in, and thus we do not know what the prognosis is. The ones we do have are positive, but not where we need them to be. My guess is that they will ask her to come back in January and we will jointly decide the course of action.
So there is a lot we don't know.
Here is what I do know:
-Chris is tough as nails, an incredible fighter who is fighting the fight of her life
-We have found the best medical care possible - no second guessing on a single thing we have done
-We have the most amazing family, friends, colleagues (IBMers), and doctors we could have ever wished for
-The power of prayer, good wishes, concern, good meals, cards, phone calls, walks in the woods, etc have been the single most important factor in her success to date. All of you reading this blog are responsible for her progress to date. Thanks to everyone of you!!!
Chris has a serious heart problem that has become worse since the spring. The number one issue, amongst many, is a significantly reduced ejection faction (EF). In simple terms, ejection faction is the % of blood pumped out of the heart with each heart beat. Normally this is in the range of 55% to 58%. In May, Chris' EF was 49%, not too bad. Today it is 35%. This has clearly worsened over the year. This is not due to the Chemo, but amyloid damage. This reduced EF is a symptom of the hardening of the left ventricle wall, which with reduced muscle elasticity has less ability to pump efficiently. There may also be some valve leakage between the atrium and the ventricle. What this all means is that Chris continues to have congestive heart failure. However, do not let the term 'failure' scare you as it did me. Failure in this case means that the heart is just not pumping at normal rates, so failure does not mean stoppage, it means reduction. The reduction in the pumping means that as her body calls for more oxygen as she exercises, climbs stairs, whatever, she will not be able to keep up with the demand. She would become easily fatigued, out of breath, and maybe have chest pounding. The cardiac story is not a good one, but she can function with normal activity and if the damage stops where it is, she can live a normal life while being careful. Nobody knows what further heart damage will occur going forward. I asked the question a hundred times, but nobody knows.
We see Dr. Falk (the most knowledgeable cardiologist in the world on this) again on December 31st. He now becomes an even bigger part of the game plan going forward since heart involvement becomes the single biggest issue we face.
OK, so now the better news. The other organs all are doing well, in fact her kidneys, which were problem number two after the heart, has actually improved since the chemo. There are a potpourri of blood and urine tests to measure kidney effectiveness. Almost all of these came back with improved results. Her kidneys are doing what they are supposed to be doing, they are seeing less amyloid proteins then they did before, and they are flushing them from the body better than before. One of the key tests is the amount of protein collected in a 24 hour urine sample (Chris hates carrying the jug around, but has now become a pro at it). Her Mg/24 hours were over 4000 in May, now they are about 2800, so this is a big drop and indicates a downward trend. But, to put it in perspective, normal is about 150 Mg/24 hours. As they explained it all today, the reduction will take as long as two years. I of course asked where we were on the reduction curve, ahead or behind what they would have expected for a good response and they said "6 months ahead of the curve". Obviously that is good.
The other key metric is the amount of lambda free light chains. Before, Chris was 660. Today she was 39. This is the single best news we have heard. This is a direct result of the chemo and indicates that the free light chain proteins that are created by her plasma cells and are floating around, combining and becoming insoluble in her organs have reduced considerably. This is about 94% reduction. Better than no reduction, better than 50% reduction, and better than 93% reduction. BUT, not a complete reduction. Normal is 15 -26. There are 4 elements that make up the criteria for a hematologic complete response (the famous HCR). Getting down to 26 or lower is one of them. The others are the Bone Marrow plasma cells at under 5% (she was at 10% in May), a Kappa/Lambda ratio between .26 and 1.65 and a good serum Immunofixation (IFE) test (too hard to explain here). The only test data we have at this point is the amount of lambda free light chains, and that is very good. The others we will get on Friday.
So now, the big question: Did we get a complete response? the answer is we do not yet know. We probably need to wait another month to see if the lambda's continue to reduce. To be honest, based on the discussions today, it is not clear if a complete response is possible. I seems to be unlikely at this point. The next big question is: what if it isn't complete response, now what?
Four options:
1) A second stem cell replant with high dose chemo (all over again), probably next spring/summer
2) An oral chemo, using a drug in trial called Revlimid
3) an oral chemo, using a drug in trial called Velcade
4) do nothing and watch.
Chris and I were very clear (more me than her) - we want to continue to be very aggressive. If they heard one word today it was "aggressive". Chris survived the pure hell of the high dose chemo this past year, and will do it again if its poison (and that is what it is) kills the rest of the bad plasma cells creating the proteins.
So here is the bottom line:
Chris has very bad heart damage, which we are seeking world class medical help to address. She will most likely be placed on an anticoagulant to prevent clots in her heart from causing a stroke.
The test results from this week are not all in, and thus we do not know what the prognosis is. The ones we do have are positive, but not where we need them to be. My guess is that they will ask her to come back in January and we will jointly decide the course of action.
So there is a lot we don't know.
Here is what I do know:
-Chris is tough as nails, an incredible fighter who is fighting the fight of her life
-We have found the best medical care possible - no second guessing on a single thing we have done
-We have the most amazing family, friends, colleagues (IBMers), and doctors we could have ever wished for
-The power of prayer, good wishes, concern, good meals, cards, phone calls, walks in the woods, etc have been the single most important factor in her success to date. All of you reading this blog are responsible for her progress to date. Thanks to everyone of you!!!
Tuesday, December 9, 2008
Return Visit - Day 2
Not a great day today. I'll keep this short, as I really am not feeling like going into great detail and I am hoping that tomorrow will be better. Today was two sessions:
1) the support group. I have now been to five of these and each f them is different. Today there were a variety of experiences/stories. A woman from California was waiting on a heart and liver transplant, a man from NC had his transplant and high dose chemo 4 years ago and was doing great, another man had just localised impact in his stomach. Many different stories, but generally all good ones. So we walked out of that feeling good about these stories.
2) met with the Boston Medical cardiologist (not the one we saw two weeks ago). To be brutally honest, neither Chris or I like this guy, and we think it is more than just the message he gives. He has the sympathy of a rock and the heart of a piece of cold steel - just brutal. So here the news was not as positive as we were hoping for. There is continued decline in Chris' heart function, specifically her ejection fraction which is a measure of pumping effectiveness. There are some "biomarkers" or measurements of heart effectiveness that were not as good as they were previously. It was not a positive story and Chris and I walked out about as low as we have felt in the last 3-4 months. Tomorrow we will get the larger picture from the doctor we trust the most, but today was a huge stab in the back.
Despite the heart results, Chris continues to feel great. She honestly has a great attitude, has alot of energy, and is very positive. I think how she feels trumps what the chemical indicators show, but for me, it has been a very tough day. I'm hoping for a better day tomorrow.
1) the support group. I have now been to five of these and each f them is different. Today there were a variety of experiences/stories. A woman from California was waiting on a heart and liver transplant, a man from NC had his transplant and high dose chemo 4 years ago and was doing great, another man had just localised impact in his stomach. Many different stories, but generally all good ones. So we walked out of that feeling good about these stories.
2) met with the Boston Medical cardiologist (not the one we saw two weeks ago). To be brutally honest, neither Chris or I like this guy, and we think it is more than just the message he gives. He has the sympathy of a rock and the heart of a piece of cold steel - just brutal. So here the news was not as positive as we were hoping for. There is continued decline in Chris' heart function, specifically her ejection fraction which is a measure of pumping effectiveness. There are some "biomarkers" or measurements of heart effectiveness that were not as good as they were previously. It was not a positive story and Chris and I walked out about as low as we have felt in the last 3-4 months. Tomorrow we will get the larger picture from the doctor we trust the most, but today was a huge stab in the back.
Despite the heart results, Chris continues to feel great. She honestly has a great attitude, has alot of energy, and is very positive. I think how she feels trumps what the chemical indicators show, but for me, it has been a very tough day. I'm hoping for a better day tomorrow.
Monday, December 8, 2008
Return Visit - Day 1
Our first day back at the clinic in a long time, but it is very familiar to us and we are comfortable being there, strange as that sounds. We know may of the people, we know the building, we know the procedures, and we know all the terms. It is easy to feel like veterans having been through this previously. As before, and as we once were, there are people there that are going through this for the first time (the deer in the headlights look) and they have no idea what to expect. They have read that this is a fatal disease on the Internet and the average life expectancy. They don't know anything about the disease, the treatment, the doctors, they are just scared to death. Chris and I relate to this so well. We tried to start up conversations with the others going through their first three days and attempted to reassure them that they have found the best place to be. On the other side of the coin, we met a man today who had been diagnosed 4 years ago at the age of 70 and he also went through the stem cell transplant and high dose chemo and is doing well. So we are both givers and receivers of the all important "hope" that is the required ingredient for success.
Day 1 consisted of the following:
Blood Work and Vital Signs: Chris has many many vials of blood drawn today. They will analyze every possible aspect of this over the next 24 hours. Her blood pressure was a bit low (91/74) but not too bad. They will check her red blood cells, her white blood cells, and about 90 other unique tests. The lab results we received last time were 12 pages long.
Chest X-Ray: Chris has had many of these and to be honest I am getting a bit worried about all the radiation she must be getting. I would say she has had over a dozen x-rays in the last year on her chest/lungs. They are looking for pleural effusion - basically water in the lungs or surrounding chest cavity. This is an indication of congestive heart failure and was a problem she had pretty badly this spring. As with the blood test, we did not get any results.
Bone Marrow Biopsy: This is the dreaded big thick long needle inserted into the pelvis bone marrow. They remove a few large needles full. They are primarily looking at the % of plasma cells and the degree that their a light chain proteins in the plasma. Again, no results today.
Echocardiagram: This is the heart imaging procedure where the measure size, wall thickness, efficiency, etc. It is about a 40 minute test that they record to a DVD. Between the echo she had a few weeks ago, and the esophagus one done last Friday, they will have lots of data to look at.
Examination: This was the only meeting with a Doctor today. They asked her about a gazillion questions about her health, her medications, her activity, her emotions, and just about everything else. They were surprised to find out we went and saw the other cardiologist, but were interested in seeing his analysis. We had not met him before as he is a "fellow" new to the center, but he seemed like a good guy. I think I amazed him a bit with my knowledge of the disease, the tests, the "biomarkers", etc. I asked him questions about her BNP, her lambda numbers, her degree of left ventricle hypertrophy, etc. ( I have done a TON of research). He was a bit taken aback but acknowledged that much "homework" had been done. Nevertheless, we got no answers, only a "wait until Wednesday" response.
So the day was uneventful. We have no further insight, no good or bad results, just an ongoing level of nervousness about what we are going to hear later in the week.
I know many of you prayed a special prayer for Chris this week. It is not possible to tell you how much this means to us, but trust me, Chris feels the amount of love and good wishes being sent her way.
More tomorrow night after Day 2.
Day 1 consisted of the following:
Blood Work and Vital Signs: Chris has many many vials of blood drawn today. They will analyze every possible aspect of this over the next 24 hours. Her blood pressure was a bit low (91/74) but not too bad. They will check her red blood cells, her white blood cells, and about 90 other unique tests. The lab results we received last time were 12 pages long.
Chest X-Ray: Chris has had many of these and to be honest I am getting a bit worried about all the radiation she must be getting. I would say she has had over a dozen x-rays in the last year on her chest/lungs. They are looking for pleural effusion - basically water in the lungs or surrounding chest cavity. This is an indication of congestive heart failure and was a problem she had pretty badly this spring. As with the blood test, we did not get any results.
Bone Marrow Biopsy: This is the dreaded big thick long needle inserted into the pelvis bone marrow. They remove a few large needles full. They are primarily looking at the % of plasma cells and the degree that their a light chain proteins in the plasma. Again, no results today.
Echocardiagram: This is the heart imaging procedure where the measure size, wall thickness, efficiency, etc. It is about a 40 minute test that they record to a DVD. Between the echo she had a few weeks ago, and the esophagus one done last Friday, they will have lots of data to look at.
Examination: This was the only meeting with a Doctor today. They asked her about a gazillion questions about her health, her medications, her activity, her emotions, and just about everything else. They were surprised to find out we went and saw the other cardiologist, but were interested in seeing his analysis. We had not met him before as he is a "fellow" new to the center, but he seemed like a good guy. I think I amazed him a bit with my knowledge of the disease, the tests, the "biomarkers", etc. I asked him questions about her BNP, her lambda numbers, her degree of left ventricle hypertrophy, etc. ( I have done a TON of research). He was a bit taken aback but acknowledged that much "homework" had been done. Nevertheless, we got no answers, only a "wait until Wednesday" response.
So the day was uneventful. We have no further insight, no good or bad results, just an ongoing level of nervousness about what we are going to hear later in the week.
I know many of you prayed a special prayer for Chris this week. It is not possible to tell you how much this means to us, but trust me, Chris feels the amount of love and good wishes being sent her way.
More tomorrow night after Day 2.
Saturday, December 6, 2008
Heading into uncharted waters
This past week and this coming week are very strange for us. We really do not know what to expect, how to properly be prepared, and how to react to different scenario's. This past week has been a busy one for Chris on the medical front, but of course next week is the big one.
On this past Tuesday, Chris had a stress test in Boston with Dr. Falk, the cardiologist. The test was short as Chris has had a bad cold that she really has not been able to shake. Lot's of coughing, stuffiness, general malaise. She said she felt tired on the treadmill after 5 minutes, and her blood pressure dropped a bit, which concerned her. She generally walks about 45 minutes straight everyday, so it was a bit disconcerting to not do as well on the stress test as she would have expected. I think we all think(or hope) this was due to her cold. As such, she has been rescheduled for another stress test on December 31 - what a way to celebrate the end of a tough year.
After this appointment on Tuesday, she met with her primary care physician who put her on an antibiotic to try to get rid of this cold. That was Tuesday and having heard her cough most of the night last night, she has not seemed to have broken this yet. I am hoping today is a much better one for her.
Yesterday, she was at another Boston hospital having a transesophageal echocardiagram. They had to put her out for this as they put a device down her throat to look at her heart more directly. The whole intent here is to look at possible damage to the right atrium and determine whether there may be some kind of an exposure with the proteins that could possible cause a stroke. The treatment is to put her on a blood thinner, possibly for the rest of her life if stroke becomes a concern.
Chris' spirits have been a little lower in the past few days. I am not sure if this is due to her cold, her having to go back to the hospital for more prodding and probing this past week, or the uncertainty of this coming week. We both know that in less than a week our lives will be different than they are now. We have many questions, concerns, hopes, etc. If there is a 50% reduction in the free light chains ( a 50% hematological response) does that mean another high dose chemo next summer? )Below in the last paragraph of this post, I will explain "free light chains). What if it is 90% or 10%. Is there a direct relationship between the percent response and life expectancy? Have there been any new medicines or clinical trials we need to pursue and consider since this past summer? Do we take immediate action or wait for her to get stronger? Clearly a lot of questions running through our mind.
Many of our friends have called to provide words of encouragement in the last few days. Those are all well appreciated. I'll try to accelerate the pace of these posting over the next week as I know how much concern and genuine interest and support exists out there.
Free light chains: We all have a small number of the protein elements that are not attached to the normal plasma protein. Our bodies produce two types of these unattached protein molecules: kappa and lambda. We have small amount floating in our blood and there is a normal ratio between them. A normal range for us is between 3 and 19 mg/L of kappa light chains, 6 and 26 mg/L for lambda light chains, and a kappa/lambda ratio of 6 and 26. Chris' kappa light chains were normal, but her lambda light chains were 660 mg/L. Thus she had more than 33X the normal rate of these lambda light chains floating in her body. These are what end up connecting to each other and forming the insoluble proteins that get lodged in the organ. Our hope is that the chemo has taken these lambda light chains from 660 to under 26. That will be a Complete Hematologic Response (the famous HCR). In a nutshell, that is what we are looking for this coming week - elimination of the lambda free light chains in her body.
Sorry for the medical lesson, but I know many have asked for a little more detail.
Have a great weekend and watch for updates next week. Thanks for your prayers this weekend.
On this past Tuesday, Chris had a stress test in Boston with Dr. Falk, the cardiologist. The test was short as Chris has had a bad cold that she really has not been able to shake. Lot's of coughing, stuffiness, general malaise. She said she felt tired on the treadmill after 5 minutes, and her blood pressure dropped a bit, which concerned her. She generally walks about 45 minutes straight everyday, so it was a bit disconcerting to not do as well on the stress test as she would have expected. I think we all think(or hope) this was due to her cold. As such, she has been rescheduled for another stress test on December 31 - what a way to celebrate the end of a tough year.
After this appointment on Tuesday, she met with her primary care physician who put her on an antibiotic to try to get rid of this cold. That was Tuesday and having heard her cough most of the night last night, she has not seemed to have broken this yet. I am hoping today is a much better one for her.
Yesterday, she was at another Boston hospital having a transesophageal echocardiagram. They had to put her out for this as they put a device down her throat to look at her heart more directly. The whole intent here is to look at possible damage to the right atrium and determine whether there may be some kind of an exposure with the proteins that could possible cause a stroke. The treatment is to put her on a blood thinner, possibly for the rest of her life if stroke becomes a concern.
Chris' spirits have been a little lower in the past few days. I am not sure if this is due to her cold, her having to go back to the hospital for more prodding and probing this past week, or the uncertainty of this coming week. We both know that in less than a week our lives will be different than they are now. We have many questions, concerns, hopes, etc. If there is a 50% reduction in the free light chains ( a 50% hematological response) does that mean another high dose chemo next summer? )Below in the last paragraph of this post, I will explain "free light chains). What if it is 90% or 10%. Is there a direct relationship between the percent response and life expectancy? Have there been any new medicines or clinical trials we need to pursue and consider since this past summer? Do we take immediate action or wait for her to get stronger? Clearly a lot of questions running through our mind.
Many of our friends have called to provide words of encouragement in the last few days. Those are all well appreciated. I'll try to accelerate the pace of these posting over the next week as I know how much concern and genuine interest and support exists out there.
Free light chains: We all have a small number of the protein elements that are not attached to the normal plasma protein. Our bodies produce two types of these unattached protein molecules: kappa and lambda. We have small amount floating in our blood and there is a normal ratio between them. A normal range for us is between 3 and 19 mg/L of kappa light chains, 6 and 26 mg/L for lambda light chains, and a kappa/lambda ratio of 6 and 26. Chris' kappa light chains were normal, but her lambda light chains were 660 mg/L. Thus she had more than 33X the normal rate of these lambda light chains floating in her body. These are what end up connecting to each other and forming the insoluble proteins that get lodged in the organ. Our hope is that the chemo has taken these lambda light chains from 660 to under 26. That will be a Complete Hematologic Response (the famous HCR). In a nutshell, that is what we are looking for this coming week - elimination of the lambda free light chains in her body.
Sorry for the medical lesson, but I know many have asked for a little more detail.
Have a great weekend and watch for updates next week. Thanks for your prayers this weekend.
Friday, November 28, 2008
Giving Thanks
This Thanksgiving week has been an interesting, and good one. With all the kids home, Chris has been energized and she really has a very positive attitude and great spirits. She has enjoyed doing lots of activities with them (cooking, errands, visiting friends, etc.) and will clearly miss the girls when they leave at the end of the weekend. I have watched and am very pleased to see how them being around has made a difference in Chris' outlook. We had Thanksgiving dinner at my sister Judy's and Chris did great with a long day, no signs of tiring and a good appetite.
On Wednesday, Chris and I had an appointment with a cardiologist in Boston who is the world renowned expert on amyloid damage to the heart. He used to be part of the Boston Medical team but has since switched medical partnerships. Nevertheless he remains the "go to guy" on this subject. Again, yet another advantage of being in Boston where the world class health care and expertise just doesn't end. Dr. Falk has led the medical field in clinical analysis and we sought him out to get his perspective, validate what we were hearing at Boston Medical, and satisfy our own need to ensure we have engaged all possible expertise. I am not sure how the Boston Medical program will react to us seeking other opinions, but I am sure they will respect our need to leverage all options.
The appointment went well. Chris had an exam including an echocardiagram, had blood work done, and we spent a long time answering questions - providing descriptions of the history, the treatment, and the period back home. This has led to two next steps. On Tuesday, Chris will have a stress test on the treadmill as they measure blood pressure, heart activity, oxygen levels, etc. This will give us an indication of her level of fitness and her ability to increase her daily amount of exercise. If she shows that she can maintain her blood pressure (and not get light-headed) while she exerts herself, this will be a good sign. If on the other hand she gets winded easily, her chest hurts, and her BP drops, this will probably indicate the heart damage is more than maybe we had thought. Tuesday will be a big day.
On Friday, Chris is going to Brighams and Womens Hospital in Boston for the next procedure. Here, they will insert a camera down her throat and somehow (Chris and I have been trying to figure this out) will snake it to her right atrium in her heart where they will look at the heart wall. They are afraid of hardened proteins deposited in her heart wall and want to see to what extent they are there. These can actually break off as a clot and cause a stroke. To prevent that from happening they are considering placing her on a blood thinner such as coumadin.
So next week will be another important week for Chris' journey to health. This of course will be followed by the week we have been trying to patiently wait for. Chris and I are both clearly getting nervous as we get closer, knowing that what we hear in the next 2 weeks will impact us more than can be written. Good or Bad, our lives will be forever changed. I could write for hours as to what I mean by that, but suffice it to say we are hoping for the best, preparing for the worst.
No matter what happens (in my heart, I know a miracle is going to happen), Chris and I are both thankful for the incredible love, support, friendship, and compassion everyone has given. We had an amazing Thanksgiving as we are more thankful than we have ever been in our lives. We are thankful for family and friends, the fact that we have been able to find the best medical support in the world, the fact that we hopefully caught this early, and the fact that we have been able to be very aggressive in treating this disease. We all have much to be thankful for.
On Wednesday, Chris and I had an appointment with a cardiologist in Boston who is the world renowned expert on amyloid damage to the heart. He used to be part of the Boston Medical team but has since switched medical partnerships. Nevertheless he remains the "go to guy" on this subject. Again, yet another advantage of being in Boston where the world class health care and expertise just doesn't end. Dr. Falk has led the medical field in clinical analysis and we sought him out to get his perspective, validate what we were hearing at Boston Medical, and satisfy our own need to ensure we have engaged all possible expertise. I am not sure how the Boston Medical program will react to us seeking other opinions, but I am sure they will respect our need to leverage all options.
The appointment went well. Chris had an exam including an echocardiagram, had blood work done, and we spent a long time answering questions - providing descriptions of the history, the treatment, and the period back home. This has led to two next steps. On Tuesday, Chris will have a stress test on the treadmill as they measure blood pressure, heart activity, oxygen levels, etc. This will give us an indication of her level of fitness and her ability to increase her daily amount of exercise. If she shows that she can maintain her blood pressure (and not get light-headed) while she exerts herself, this will be a good sign. If on the other hand she gets winded easily, her chest hurts, and her BP drops, this will probably indicate the heart damage is more than maybe we had thought. Tuesday will be a big day.
On Friday, Chris is going to Brighams and Womens Hospital in Boston for the next procedure. Here, they will insert a camera down her throat and somehow (Chris and I have been trying to figure this out) will snake it to her right atrium in her heart where they will look at the heart wall. They are afraid of hardened proteins deposited in her heart wall and want to see to what extent they are there. These can actually break off as a clot and cause a stroke. To prevent that from happening they are considering placing her on a blood thinner such as coumadin.
So next week will be another important week for Chris' journey to health. This of course will be followed by the week we have been trying to patiently wait for. Chris and I are both clearly getting nervous as we get closer, knowing that what we hear in the next 2 weeks will impact us more than can be written. Good or Bad, our lives will be forever changed. I could write for hours as to what I mean by that, but suffice it to say we are hoping for the best, preparing for the worst.
No matter what happens (in my heart, I know a miracle is going to happen), Chris and I are both thankful for the incredible love, support, friendship, and compassion everyone has given. We had an amazing Thanksgiving as we are more thankful than we have ever been in our lives. We are thankful for family and friends, the fact that we have been able to find the best medical support in the world, the fact that we hopefully caught this early, and the fact that we have been able to be very aggressive in treating this disease. We all have much to be thankful for.
Sunday, November 16, 2008
Just waiting
As we get closer to the big 3 day evaluation back in Boston, it is becoming more difficult to wait, at least for me. Chris and I want to know what direction things are going and we will not know for sure until we get a final analysis the end of the week of December 8th. I am sure the week before will be one of much anxiety.
Chris is generally continuing to do well. She stays active, is very alert, and usuallykeeps a positive attitude. Yet, she has yet to gain any significant weight, which has been an ongoing issue for months. Despite a great deal of trying hard to eat high calorie foods, she is still only at 105 pounds. This week will be 5 months since her stem cell transplant, and yet in all that time, she has gained little weight. Some of this may be due to her long walks everyday, but we will see what the doctors say when we meet with them.
Chris actually went to the hair salon last week with her mother. While she was there, she had the back of her next cleaned up a small bit. The minor act of sitting in a salon chair seemed to have pleased Chris. She was happy to brag that "she got her hair done". In reality, it has really started to come back well. It is still very short, but at this point you cannot see her scalp anymore. That said, she continues to run into old acquaintances and many of them don't recognize her. She is very thin and she wears a scarf on her head, so she gets strange looks from people and she needs to say "Hi, yes, it's me".
So we watch the calendar inch forward. As we get closer, each day seems to take longer.
In the meantime, Chris is still getting cards of encouragement and an incredible amount of support from friends, friends of friends, distant family members, etc. Thanks to all of you for that.
Chris is generally continuing to do well. She stays active, is very alert, and usuallykeeps a positive attitude. Yet, she has yet to gain any significant weight, which has been an ongoing issue for months. Despite a great deal of trying hard to eat high calorie foods, she is still only at 105 pounds. This week will be 5 months since her stem cell transplant, and yet in all that time, she has gained little weight. Some of this may be due to her long walks everyday, but we will see what the doctors say when we meet with them.
Chris actually went to the hair salon last week with her mother. While she was there, she had the back of her next cleaned up a small bit. The minor act of sitting in a salon chair seemed to have pleased Chris. She was happy to brag that "she got her hair done". In reality, it has really started to come back well. It is still very short, but at this point you cannot see her scalp anymore. That said, she continues to run into old acquaintances and many of them don't recognize her. She is very thin and she wears a scarf on her head, so she gets strange looks from people and she needs to say "Hi, yes, it's me".
So we watch the calendar inch forward. As we get closer, each day seems to take longer.
In the meantime, Chris is still getting cards of encouragement and an incredible amount of support from friends, friends of friends, distant family members, etc. Thanks to all of you for that.
Saturday, November 8, 2008
A Reality Slap To The Face
A very strange week with some great highs and some tough lows.
Chris and I went out to Hartwick to visit Abby on parents weekend last weekend and it was very good. Chris did great with the travel, the two hotel nights, walking all over campus, going out for dinner, shopping with Abby, etc. A very busy couple of days, requiring stamina with little down time. She never complained about being tired or not feeling well. On Monday night, we had agreed to meet with some friends from Ohio for dinner in Boston whom we had met at the BU Clinic back in June. He went through the program about 4 weeks before Chris. We had not seen them since then and they were back for their tests after 6 months. It was great to compare notes, horror stories, medication regiments, exercise routines, etc. He had grown a fair amount of hair back and was walking daily and even playing golf. It was encouraging for Chris to see the improvement in energy, confidence, and demeanor since we saw them last. It was fun to go in to Boston and enjoy a great dinner - something fairly normal that we don't take for granted any more. We received a few notes from them as they went through the various three days of testing during the week.
The rest of the week was very busy as well. Between voting, doing her daily walks, keeping the house organized, Chris was busy and really feeling confident. Wednesday night she told me "I am really feeling "normal" again". These are just incredible words to hear.
On Thursday, she drove up to NH to see her parents. She drove by herself (2-2.5 hours), went to dinner with them and raked leaves and did chores around the house on Friday, driving home late Friday afternoon. A few months ago she just started driving downtown and now she is driving to NH by herself to help her parents do jobs around their house. I know I keep saying it, but I am amazed by the energy and confidence.
After she got home from NH last night, we went to the H.S. football game. We stood and talked to good friends during the game and Chris was laughing and really enjoyed being out, even after a busy few days. Getting home, she stayed up and did more things around the house. Overall, an extremely busy, very hectic last week between NY, NH, and activities at home. Life as we want it.
Then reality set in, quickly.
We received an email Friday night from the friends in Ohio who had returned home from their three days of evaluations. They were devastated at the results that they had just heard. They, like us, thought all was going amazingly well - the ability to play golf, the daily exercises, the alertness, etc. Yet, after he showed so much visible improvement, their results came back at a reduction of the proteins of 65%. Obviously that means that his body is still producing 35% of the defective proteins - not the Hematologic Complete Response (HCR) that we all pray for. In my eternal optimism, my naivete, and daily indicators of her progress, I am afraid that we have been slowly lulled into a false sense of confidence. As posted way back months ago, the chance of a complete response is 40%-50%, a partial response from 25%-40%, and no response or fatility (the 100 days) from 10% to 25%. I think in both of our minds, we have convinced ourselves that she has has had a complete response. That is what we pray for daily. Yet, the reality of our friends results cannot be ignored. He had stated earlier that he "will never, ever, ever do chemo again". Under no cicumstances. However with only a partial response, he has no choice. The tougher news is that they did not collect enough stem cells to do a second transplant and high dose chemo back in June. He will have to do oral chemo for three weeks every three months. He'll lose the hair, have no energy, get all the sickness again, etc. I am sure this second "kick", he will beat the proteins once and for all, but for us, it is reality slapping us in the face. We have no idea what Chris' response will be when we go back in December. It could be 100% or it could be 10%. We have said we need to hope for the best, plan for the worst. But we have allowed little of the "worst" to creep into our heads. False optimism, denial, foolishness - I'm not sure. It's carried us this far, but we need to be prepared for all outcomes. Reality time is coming soon.
Keep up the prayers, this isn't over yet. Thanks to all of you.
Chris and I went out to Hartwick to visit Abby on parents weekend last weekend and it was very good. Chris did great with the travel, the two hotel nights, walking all over campus, going out for dinner, shopping with Abby, etc. A very busy couple of days, requiring stamina with little down time. She never complained about being tired or not feeling well. On Monday night, we had agreed to meet with some friends from Ohio for dinner in Boston whom we had met at the BU Clinic back in June. He went through the program about 4 weeks before Chris. We had not seen them since then and they were back for their tests after 6 months. It was great to compare notes, horror stories, medication regiments, exercise routines, etc. He had grown a fair amount of hair back and was walking daily and even playing golf. It was encouraging for Chris to see the improvement in energy, confidence, and demeanor since we saw them last. It was fun to go in to Boston and enjoy a great dinner - something fairly normal that we don't take for granted any more. We received a few notes from them as they went through the various three days of testing during the week.
The rest of the week was very busy as well. Between voting, doing her daily walks, keeping the house organized, Chris was busy and really feeling confident. Wednesday night she told me "I am really feeling "normal" again". These are just incredible words to hear.
On Thursday, she drove up to NH to see her parents. She drove by herself (2-2.5 hours), went to dinner with them and raked leaves and did chores around the house on Friday, driving home late Friday afternoon. A few months ago she just started driving downtown and now she is driving to NH by herself to help her parents do jobs around their house. I know I keep saying it, but I am amazed by the energy and confidence.
After she got home from NH last night, we went to the H.S. football game. We stood and talked to good friends during the game and Chris was laughing and really enjoyed being out, even after a busy few days. Getting home, she stayed up and did more things around the house. Overall, an extremely busy, very hectic last week between NY, NH, and activities at home. Life as we want it.
Then reality set in, quickly.
We received an email Friday night from the friends in Ohio who had returned home from their three days of evaluations. They were devastated at the results that they had just heard. They, like us, thought all was going amazingly well - the ability to play golf, the daily exercises, the alertness, etc. Yet, after he showed so much visible improvement, their results came back at a reduction of the proteins of 65%. Obviously that means that his body is still producing 35% of the defective proteins - not the Hematologic Complete Response (HCR) that we all pray for. In my eternal optimism, my naivete, and daily indicators of her progress, I am afraid that we have been slowly lulled into a false sense of confidence. As posted way back months ago, the chance of a complete response is 40%-50%, a partial response from 25%-40%, and no response or fatility (the 100 days) from 10% to 25%. I think in both of our minds, we have convinced ourselves that she has has had a complete response. That is what we pray for daily. Yet, the reality of our friends results cannot be ignored. He had stated earlier that he "will never, ever, ever do chemo again". Under no cicumstances. However with only a partial response, he has no choice. The tougher news is that they did not collect enough stem cells to do a second transplant and high dose chemo back in June. He will have to do oral chemo for three weeks every three months. He'll lose the hair, have no energy, get all the sickness again, etc. I am sure this second "kick", he will beat the proteins once and for all, but for us, it is reality slapping us in the face. We have no idea what Chris' response will be when we go back in December. It could be 100% or it could be 10%. We have said we need to hope for the best, plan for the worst. But we have allowed little of the "worst" to creep into our heads. False optimism, denial, foolishness - I'm not sure. It's carried us this far, but we need to be prepared for all outcomes. Reality time is coming soon.
Keep up the prayers, this isn't over yet. Thanks to all of you.
Thursday, October 30, 2008
Doctors Appointment Today
Another checkup with Chris' primary and things are still progressing well. The good news:
- her lungs were very clear, best in a long time, hardly any fluid at all
- blood pressure has remained very good
- no measurable edema
- increasingly more stamina
She gets good grades for all her progress.
Needs improvement:
- weight gain. Is stuck in low 100's (103 pounds this morning) despite an incredible valiant attempt to eat early and often. Her doctor believes this may indicate some intestinal impact but that is not clear.
- still some red marks showing on her skin. These come and go, but are marker that should stop after awhile.
- cold head!! Chris can't believe that men walk around all day long with their head so cold. She is starting to really get a scalp full of coverage, but still is always complaining that her head is so cold.
Her walking has continued with daily treks. She now tracks her distance with a pedometer (thanks Paula) and can ensure that she really improves her speed and distance on a regular basis. I just remain amazed at the difference since this summer when she was at the other end of the spectrum. Going back and reading the posts from late June/early July and the stark improvement jumps out.
There was an interesting article in the Wall Street Journal recently indicating the need for a family member as a patient advocate for someone in the hospital. I could not agree with this more. I can cite many examples when staff turnover, general inattention, sloppy procedures, and unclear direction added an undue level of risk into Chris' recovery. As I have said before, Boston Medical Center was outstanding, beyond any expectations of a world class facility, but no hospital is perfect and no individual totally focused. The value of a patient advocate, whose sole focus is that of caregiver in the hospital cannot be overstated. Watching, questioning, learning, explaining, documenting, and questioning again, even if overzealous, is so important.
Chris and I will go and visit Abby for parents weekend tomorrow. This is another major milestone. Abby is doing great, we'll be glad to see her, and Chris will certainly get some exercise on the hills.
All the time, I keep looking at the calendar. We are getting closer and closer to December. To be honest, I get more nervous every day, but I think how incredibly lucky and blessed we have been so far.
- her lungs were very clear, best in a long time, hardly any fluid at all
- blood pressure has remained very good
- no measurable edema
- increasingly more stamina
She gets good grades for all her progress.
Needs improvement:
- weight gain. Is stuck in low 100's (103 pounds this morning) despite an incredible valiant attempt to eat early and often. Her doctor believes this may indicate some intestinal impact but that is not clear.
- still some red marks showing on her skin. These come and go, but are marker that should stop after awhile.
- cold head!! Chris can't believe that men walk around all day long with their head so cold. She is starting to really get a scalp full of coverage, but still is always complaining that her head is so cold.
Her walking has continued with daily treks. She now tracks her distance with a pedometer (thanks Paula) and can ensure that she really improves her speed and distance on a regular basis. I just remain amazed at the difference since this summer when she was at the other end of the spectrum. Going back and reading the posts from late June/early July and the stark improvement jumps out.
There was an interesting article in the Wall Street Journal recently indicating the need for a family member as a patient advocate for someone in the hospital. I could not agree with this more. I can cite many examples when staff turnover, general inattention, sloppy procedures, and unclear direction added an undue level of risk into Chris' recovery. As I have said before, Boston Medical Center was outstanding, beyond any expectations of a world class facility, but no hospital is perfect and no individual totally focused. The value of a patient advocate, whose sole focus is that of caregiver in the hospital cannot be overstated. Watching, questioning, learning, explaining, documenting, and questioning again, even if overzealous, is so important.
Chris and I will go and visit Abby for parents weekend tomorrow. This is another major milestone. Abby is doing great, we'll be glad to see her, and Chris will certainly get some exercise on the hills.
All the time, I keep looking at the calendar. We are getting closer and closer to December. To be honest, I get more nervous every day, but I think how incredibly lucky and blessed we have been so far.
Monday, October 20, 2008
Update on Chris
Chris continues her forward momentum. She has been getting out even more than before, has been very busy with normal activities and is really getting back to running things around here her way. My brief assignment as head of the household has been unceremoniously ripped from my clenched fists. Clearly my turn at the top of the family food chain has been deemed as a nice experiment, but in Chris' mind can easily be considered a weak attempt at organization. Without a doubt she is getting stronger!!
Yesterday Chris walked 5 miles (with some good hills) as part of a Walk for Breast Cancer fundraiser. She was hesitant to do this as it would be at a good pace and no opportunity to really stop and rest. She completed it with no issues at all. Here she is diagnosed with a very serious disease that she is battling everyday and she goes out and does this event. We are all very proud of her. This was both a physical and mental challenge and she did it with a smile on her face. I asked her if she thought she could have done this a few weeks before any of the chemo or stem cell transplant and she thought she could not have. In other words, she feels better now then she did before the incredible undertaking she went through this summer. This to me is a testament that something is going well. We don't know what is happening on the inside (we won't until December). but without question, good things are happening on the outside.
Chris still continues to be extremely thin (104 pounds) and has got to now focus on muscle strengthening. She wants to go back to yoga and her gym, but is afraid of all the germs, so we are kind of in a no-man's land; needing to workout with a trainer but not able to go to the gym where all the equipment and her friends are. She will probably soon get frustrated enough to just go ahead and start the workouts and yoga, while ensuring she is maniacal about washing hands, etc.
She has started to see many more of her friends around town as she gets out more. Some recognize her immediately and rush to give her a hug, while others just nod at her and have no idea who she is. Then they do a double take and are thrilled to see her. I am sure that when we get some weight on her, she loses the always present head scarf, and she gets a little color, that she will look as good as new. In all cases, everyone is thrilled to see her and are eager to tell her how they are of her. I know we all are.
Yesterday Chris walked 5 miles (with some good hills) as part of a Walk for Breast Cancer fundraiser. She was hesitant to do this as it would be at a good pace and no opportunity to really stop and rest. She completed it with no issues at all. Here she is diagnosed with a very serious disease that she is battling everyday and she goes out and does this event. We are all very proud of her. This was both a physical and mental challenge and she did it with a smile on her face. I asked her if she thought she could have done this a few weeks before any of the chemo or stem cell transplant and she thought she could not have. In other words, she feels better now then she did before the incredible undertaking she went through this summer. This to me is a testament that something is going well. We don't know what is happening on the inside (we won't until December). but without question, good things are happening on the outside.
Chris still continues to be extremely thin (104 pounds) and has got to now focus on muscle strengthening. She wants to go back to yoga and her gym, but is afraid of all the germs, so we are kind of in a no-man's land; needing to workout with a trainer but not able to go to the gym where all the equipment and her friends are. She will probably soon get frustrated enough to just go ahead and start the workouts and yoga, while ensuring she is maniacal about washing hands, etc.
She has started to see many more of her friends around town as she gets out more. Some recognize her immediately and rush to give her a hug, while others just nod at her and have no idea who she is. Then they do a double take and are thrilled to see her. I am sure that when we get some weight on her, she loses the always present head scarf, and she gets a little color, that she will look as good as new. In all cases, everyone is thrilled to see her and are eager to tell her how they are of her. I know we all are.
Friday, October 10, 2008
Friday - October 10
Things continue to get better and better with Chris. She has more energy, is moving fast, keeping very busy, and starting to really grow some hair back. Nothing long, but definitely covering her scalp. It is really amazing how she is falling right back into her normal life after such an incredible summer. She is up to a whopping 103.5 pounds, yet she continues to eat very well. The food from the neighbors keeps coming, with everyone trying to fatten her up - but of course I am the one packing it on.
Chris feels she can travel relatively comfortably, so we will spend some of next week looking at colleges in upstate NY, VT, NH, and Maine with Stephen and me. Last weekend she went to the local town fair and ran into many friends she had not seen since prior to all of this. She was very glad to see them and vice-versa. She is more confident getting out in public, going to restaurants, etc.
She has had a little bit of edema in her legs, just a little, but we will watch it and increase the diuretics as required.
Chris has been in touch with another patient from Ohio who went through the treatment just prior to us and we hope to meet them for a dinner in Boston when he comes back for his 6 month evaluation. There is a small community of patients, and it is important to talk, share progress, give each other support, etc. Chris has also been watching another patients story unfold down in NYC with a blog like this one. As I have said, she has never read this blog, but really is interested in the others. This particular patient was in the hospital for the entire period, was allowed to go home after 5 or 6 weeks, and returned to the hospital after 2 hours at home with an infection. He has been in the ICU with severe kidney issues, but the most recent blog update indicates significant improvement. She prays for him like many of you have prayed for her.
Chris told me today that she is going to live her life as normally as possible between now and December 8th. She is "tired of being sick" and knowing that things are going to get very strange as we get closer to that date, she is going to just be "normal". Hopefully in a month or so she will be confident enough that she can go out without wearing a head scarf, and nobody will even know what she has lived through.
For me, I know that I have promised to post my own "lessons I have learned" list. To be honest, I really want to be in the right frame of mind when I do that. I have thought for many many hours what I would share in terms of my experiences as Chris' caregiver, medical advocate, husband, best friend, researcher, cook, driver, and bodily fluid cleaner upper. I am not sure how insightful I will be, but it will be a personal catharsis for me if nothing else.
As Sarah Palin would say, "let me give a big shout out" to all the incredible number of friends, family, and worldwide well wishers who continue to support Chris. You all get "extra credit".
Thanks to all you. The incredible number of cards sent to her blew her away. She is still getting some and they mean a great deal to her. I thought at one point they would have to back a truck up to the house. THANKS!!!!
p.s. my apologies for the slowness in the updates, but I will keep them coming up to and through our visit in December.
Thanks again - I can't say it enough.
Chris feels she can travel relatively comfortably, so we will spend some of next week looking at colleges in upstate NY, VT, NH, and Maine with Stephen and me. Last weekend she went to the local town fair and ran into many friends she had not seen since prior to all of this. She was very glad to see them and vice-versa. She is more confident getting out in public, going to restaurants, etc.
She has had a little bit of edema in her legs, just a little, but we will watch it and increase the diuretics as required.
Chris has been in touch with another patient from Ohio who went through the treatment just prior to us and we hope to meet them for a dinner in Boston when he comes back for his 6 month evaluation. There is a small community of patients, and it is important to talk, share progress, give each other support, etc. Chris has also been watching another patients story unfold down in NYC with a blog like this one. As I have said, she has never read this blog, but really is interested in the others. This particular patient was in the hospital for the entire period, was allowed to go home after 5 or 6 weeks, and returned to the hospital after 2 hours at home with an infection. He has been in the ICU with severe kidney issues, but the most recent blog update indicates significant improvement. She prays for him like many of you have prayed for her.
Chris told me today that she is going to live her life as normally as possible between now and December 8th. She is "tired of being sick" and knowing that things are going to get very strange as we get closer to that date, she is going to just be "normal". Hopefully in a month or so she will be confident enough that she can go out without wearing a head scarf, and nobody will even know what she has lived through.
For me, I know that I have promised to post my own "lessons I have learned" list. To be honest, I really want to be in the right frame of mind when I do that. I have thought for many many hours what I would share in terms of my experiences as Chris' caregiver, medical advocate, husband, best friend, researcher, cook, driver, and bodily fluid cleaner upper. I am not sure how insightful I will be, but it will be a personal catharsis for me if nothing else.
As Sarah Palin would say, "let me give a big shout out" to all the incredible number of friends, family, and worldwide well wishers who continue to support Chris. You all get "extra credit".
Thanks to all you. The incredible number of cards sent to her blew her away. She is still getting some and they mean a great deal to her. I thought at one point they would have to back a truck up to the house. THANKS!!!!
p.s. my apologies for the slowness in the updates, but I will keep them coming up to and through our visit in December.
Thanks again - I can't say it enough.
Monday, September 29, 2008
Day 100 - Thanks to all of you
Just a quick update (I will write more in the next day or two), but I wanted to say THANK YOU to all of you who took the time to send something to Chris. It was absolutely amazing to see the outpouring of love, the incredible comments of support, the variety of people, and the resulting stunned reaction from Chris. She was so pleased to read each and every card and realize that so many people were rooting for her. From high school friends, colleagues at work, neighbors, friends of parents and siblings, friends of our daughters away at college, the cards were fantastic.
Chris also received cards from people she did not know, some of whom have been following her journey on this blog, some of whom are going through the same journey themselves. Of course, the cookies, the cakes, the balloons, and the anonymous flowers (beautiful) also were well received and greatly appreciated by Chris. She honestly was shocked at how much people cared and are praying for her recovery.
Chris had a great day. To see the progress from as little as a month ago, would surprise many people. Just 3 months ago, Chris would eat a half slice of toast and a small glass of OJ and 30 minutes later she would lose it. She could not walk 40 feet without having to stop and take a rest, and she was almost in a deep sleep while listening and watching things going on around here. I was honestly scared that we would never get to see again the incredibly strong and fun-loving Chris that we knew just a year ago. Yet, she is really coming back strong in the last few weeks.
So today, we start a new chapter in this journey. The focus now is to:
-get strong and conditioned and feeling physically able to do almost anything
-get back to a normal routine and lifestyle
-get mentally prepared for December when we go back to Boston Medical and come to the next crossroad on this path.
As I have told her many times, her new full time job is to focus 100% on herself.
I cannot thank you all enough. You have been amazing and you have made a huge difference. Trust me. THANK YOU!!!!
Chris also received cards from people she did not know, some of whom have been following her journey on this blog, some of whom are going through the same journey themselves. Of course, the cookies, the cakes, the balloons, and the anonymous flowers (beautiful) also were well received and greatly appreciated by Chris. She honestly was shocked at how much people cared and are praying for her recovery.
Chris had a great day. To see the progress from as little as a month ago, would surprise many people. Just 3 months ago, Chris would eat a half slice of toast and a small glass of OJ and 30 minutes later she would lose it. She could not walk 40 feet without having to stop and take a rest, and she was almost in a deep sleep while listening and watching things going on around here. I was honestly scared that we would never get to see again the incredibly strong and fun-loving Chris that we knew just a year ago. Yet, she is really coming back strong in the last few weeks.
So today, we start a new chapter in this journey. The focus now is to:
-get strong and conditioned and feeling physically able to do almost anything
-get back to a normal routine and lifestyle
-get mentally prepared for December when we go back to Boston Medical and come to the next crossroad on this path.
As I have told her many times, her new full time job is to focus 100% on herself.
I cannot thank you all enough. You have been amazing and you have made a huge difference. Trust me. THANK YOU!!!!
Friday, September 26, 2008
Quick Update
Things are getting better with Chris all the time:
-She walked 3 times yesterday, combined over 6 miles. Lot's of exercise is critical and she is doing a good job with it.
-She is driving alone regularly, running errands, etc.
-She has been sleeping better and better - probably due to more exercise.
-Her blood pressure has been remaining strong (concern is that it is low) so she may be able to reduce some of that medication. The pharmacy warehouse of medications she has been taking since June has been reduced considerably, but still about 15 pills a day at this point.
Chris' sister Debbie, who managed the home front this summer while Chris and I were in Boston, is flying up for the weekend. She has not seen Chris since the end of August, so it will be a good comparison point.
The cards have been coming in - Thank You! They put a smile on her face everytime she opens one up. We are going to enjoy the weekend, celebrating the 100 days. Your cards are part of that celebration.
-She walked 3 times yesterday, combined over 6 miles. Lot's of exercise is critical and she is doing a good job with it.
-She is driving alone regularly, running errands, etc.
-She has been sleeping better and better - probably due to more exercise.
-Her blood pressure has been remaining strong (concern is that it is low) so she may be able to reduce some of that medication. The pharmacy warehouse of medications she has been taking since June has been reduced considerably, but still about 15 pills a day at this point.
Chris' sister Debbie, who managed the home front this summer while Chris and I were in Boston, is flying up for the weekend. She has not seen Chris since the end of August, so it will be a good comparison point.
The cards have been coming in - Thank You! They put a smile on her face everytime she opens one up. We are going to enjoy the weekend, celebrating the 100 days. Your cards are part of that celebration.
Tuesday, September 23, 2008
Day 95
The support group meeting in Boston this past weekend was very interesting. Chris and I met about 6 other couples who were a combination patient/caregiver, each with their own unique story and road travelled. We met people who had a stem cell transplant with High Dose Chemo 3 years ago, with great success, to another man who had undergone two transplants with no success but is now undergoing an oral chemo regiment, to a third man who was rejected for any transplant due to advanced progression. There was a guest lecturer, a neurologist, who described the symptoms when this disease manifests itself in the autonomic nerve system. This "neuroprathy" is very debilitating where the proteins effectively kill the nerve cells. It does not take much imagination to understand the consequences of what this does to the body. Chris has has no signs of any nerve damage at all (only heart and lungs).
We both walked away from that session with some reconfirmations of what we knew before:
-we were very early in identifying this disease compared to many who went from doctor to doctor with no diagnosis
-Chris was in the majority of sufferers. The normal patient is male over 60 years old, so she is clearly unique. Doing the math, with only 2000 cases diagnosed annually, being a much younger female probably makes her one of 300-400 in the entire US who has this.
-As with most diseases, there are very passionate individuals who lead national advocacy organizations, including lobbying activities, fund raising, tracking clinical trials, etc. These people do unheralded work but make a tremendous difference. They are well respected by the doctors treating this disease as they work tirelessly to fight the battle beyond the hospital walls.
Chris has continued to increase her walking, going a good 5 miles every day. She comes back very tired, and her legs ache, but it is just incredible to see the difference from just two months ago. She has to fight the urge to just relax as her body screams "enough already", but she has been diligent. This is her full time job right now - get herself as strong as possible. She also had a very busy day today as she drove 3 1/2 hours (7 total) to visit Abby. She was the passenger, as her great friend did all the driving, but it was all worth it to go and let Abby see her. Just in the month since Abby has been at school there has been so much progress. it was important for both of them as Chris was unable to go to the drop off back in August. She got to see the dorm, the room, meet the roommate, etc, and this was very important for Chris. I am sure she will be very tired for a day or two, but again, all worth it. Thanks to Sally!!! It meant a ton to Chris.
We now have another incentive to get very health very quickly. Melissa has applied and been accepted for a semester abroad in Perth, Australia. She will go in January and attend classes as part of an Australian nursing college. Chris has always wanted to go to Australia and I would be thrilled to take her there. I have some great work friends in Sydney who have hosted me in Australia many times, and have also been very interested in her progress, and it would be great to get together with a very healthy wife. Much to plan, but a great objective.
Today is Day 95. As Chris has never read the blog, despite our original intent to have her post to it, it will still be a great surprise to her if you could all send a congratulations card that would arrive on Saturday, Sept 27 ( or thereabouts). A simple card whether from Holliston, NJ, Texas, Nevada, Europe, or Asia, just to let her know how much support she has had would be a fantastic gift. It would give her an incredible strength that she will need to get to December and the very scary results of the hell she has gone through. Just wish for a "Complete Hematological Response" (HCR) and I know it will make a difference. The address is in the post below this one.
This woman is made of steel, and has fought an incredible battle. She is both stoic and scared, as we all are, but with the amazing support she has received from all of you, she knows she has hundreds of people personally rooting for her. At day 100, a major milestone, she will have successfully climbed a very steep mountain. From that peak, we can all pray that she can see far far into the future for many years. I'm looking forward to letting you know how surprised she is.
Thanks to all!!!!
We both walked away from that session with some reconfirmations of what we knew before:
-we were very early in identifying this disease compared to many who went from doctor to doctor with no diagnosis
-Chris was in the majority of sufferers. The normal patient is male over 60 years old, so she is clearly unique. Doing the math, with only 2000 cases diagnosed annually, being a much younger female probably makes her one of 300-400 in the entire US who has this.
-As with most diseases, there are very passionate individuals who lead national advocacy organizations, including lobbying activities, fund raising, tracking clinical trials, etc. These people do unheralded work but make a tremendous difference. They are well respected by the doctors treating this disease as they work tirelessly to fight the battle beyond the hospital walls.
Chris has continued to increase her walking, going a good 5 miles every day. She comes back very tired, and her legs ache, but it is just incredible to see the difference from just two months ago. She has to fight the urge to just relax as her body screams "enough already", but she has been diligent. This is her full time job right now - get herself as strong as possible. She also had a very busy day today as she drove 3 1/2 hours (7 total) to visit Abby. She was the passenger, as her great friend did all the driving, but it was all worth it to go and let Abby see her. Just in the month since Abby has been at school there has been so much progress. it was important for both of them as Chris was unable to go to the drop off back in August. She got to see the dorm, the room, meet the roommate, etc, and this was very important for Chris. I am sure she will be very tired for a day or two, but again, all worth it. Thanks to Sally!!! It meant a ton to Chris.
We now have another incentive to get very health very quickly. Melissa has applied and been accepted for a semester abroad in Perth, Australia. She will go in January and attend classes as part of an Australian nursing college. Chris has always wanted to go to Australia and I would be thrilled to take her there. I have some great work friends in Sydney who have hosted me in Australia many times, and have also been very interested in her progress, and it would be great to get together with a very healthy wife. Much to plan, but a great objective.
Today is Day 95. As Chris has never read the blog, despite our original intent to have her post to it, it will still be a great surprise to her if you could all send a congratulations card that would arrive on Saturday, Sept 27 ( or thereabouts). A simple card whether from Holliston, NJ, Texas, Nevada, Europe, or Asia, just to let her know how much support she has had would be a fantastic gift. It would give her an incredible strength that she will need to get to December and the very scary results of the hell she has gone through. Just wish for a "Complete Hematological Response" (HCR) and I know it will make a difference. The address is in the post below this one.
This woman is made of steel, and has fought an incredible battle. She is both stoic and scared, as we all are, but with the amazing support she has received from all of you, she knows she has hundreds of people personally rooting for her. At day 100, a major milestone, she will have successfully climbed a very steep mountain. From that peak, we can all pray that she can see far far into the future for many years. I'm looking forward to letting you know how surprised she is.
Thanks to all!!!!
Saturday, September 20, 2008
Support Group
Today Chris and I head back to the Boston Medical Center to attend out first support group meeting. These are different than the weekly meetings held in the center, but instead are larger meetings, almost conferences, with guest speakers, updates on clinical programs, etc. We have no idea what to expect, but it is important that we attend. I think all diseases have some sort of Advocacy or lobbying organization, and annual conferences, etc. This one is so rare that I believe the organizing body is very small. We'll know more when we get there.
Chris continues making forward progress, with some concerns. In the last few days she has really picked up the walking, going over 5 miles over two sessions. She comes back exhausted, but without question, she is reconditioning herself. It will be along time before she can get back on the tennis court, but I am sure it will be possible if she keeps her personal determination in place. She also has been driving by herself, running errands, etc. It seems so easy, but it really has been a major step for her. For almost 4 months, she has done almost everything with someone: her sister, her amazing friends, her parents, or myself. She is still very reluctant, to be exposed to a germ infected world, and has to wipe down everything prior to touching it, but clearly her ability and willingness to go it alone is a major milestone. Hooray!!!
I was in San Fransisco for a few days this week while Chris held down the house with no issues. We've come a long way from me having to sleep in that chair in the hospital many nights in a row. As I said in the last post, her voice, her stature, her demeanor have all improved. In fact, just like a newly seeded lawn, there is clear evidence of hair growth. It is thin and very short, but the evidence is clear - the hair is coming back.
Just another reminder/request. September 28th, next weekend, is Chris' 100 days of her new life. She has been through a life threatening period, that has taken an incredible bite out of her. Yet she has come through this very well so far. A note of congratulations from you would be just incredible. I have so many friends at work from around the world (Sydney, Singapore, France, Spain, UK, etc.) who have asked about her, her old high school friends from Belgium, friends of both of our parents, friends from her home town, friends here in Mass., it just is amazing. If I could ask you to send just a congratulations card from you, your spouses, your kids away at school, from every and anyone who is aware of this incredible battle she is fighting, it would give her a jolt of strength she is going to need to get to December 8th (the next diagnosis date). If you have never met her, but have been praying/thinking/watching/wondering. then it would be even greater that you could spend the few minutes to send a card. She has no idea (it is unfathomable even to me) how much love has her been sent her way.
Chris Wright
20 Rolling Meadow Drive
Holliston, MA 01746 USA
Someday I will figure out how to thank everyone, but for now I hope you have a piece of knowledge in your heart that you all, everyone of you, have had a hand in her success.
THANK YOU!!!
Chris continues making forward progress, with some concerns. In the last few days she has really picked up the walking, going over 5 miles over two sessions. She comes back exhausted, but without question, she is reconditioning herself. It will be along time before she can get back on the tennis court, but I am sure it will be possible if she keeps her personal determination in place. She also has been driving by herself, running errands, etc. It seems so easy, but it really has been a major step for her. For almost 4 months, she has done almost everything with someone: her sister, her amazing friends, her parents, or myself. She is still very reluctant, to be exposed to a germ infected world, and has to wipe down everything prior to touching it, but clearly her ability and willingness to go it alone is a major milestone. Hooray!!!
I was in San Fransisco for a few days this week while Chris held down the house with no issues. We've come a long way from me having to sleep in that chair in the hospital many nights in a row. As I said in the last post, her voice, her stature, her demeanor have all improved. In fact, just like a newly seeded lawn, there is clear evidence of hair growth. It is thin and very short, but the evidence is clear - the hair is coming back.
Just another reminder/request. September 28th, next weekend, is Chris' 100 days of her new life. She has been through a life threatening period, that has taken an incredible bite out of her. Yet she has come through this very well so far. A note of congratulations from you would be just incredible. I have so many friends at work from around the world (Sydney, Singapore, France, Spain, UK, etc.) who have asked about her, her old high school friends from Belgium, friends of both of our parents, friends from her home town, friends here in Mass., it just is amazing. If I could ask you to send just a congratulations card from you, your spouses, your kids away at school, from every and anyone who is aware of this incredible battle she is fighting, it would give her a jolt of strength she is going to need to get to December 8th (the next diagnosis date). If you have never met her, but have been praying/thinking/watching/wondering. then it would be even greater that you could spend the few minutes to send a card. She has no idea (it is unfathomable even to me) how much love has her been sent her way.
Chris Wright
20 Rolling Meadow Drive
Holliston, MA 01746 USA
Someday I will figure out how to thank everyone, but for now I hope you have a piece of knowledge in your heart that you all, everyone of you, have had a hand in her success.
THANK YOU!!!
Monday, September 15, 2008
Clear Progress
Almost everyone who has seen Chris recently has agreed that she has visibly improved during the last week or so. You can hear it in her voice, her stride is quicker, her demeanor more positive, everything is looking better. She has a new found confidence that just a few weeks ago did not seem likely. A few milestones:
-Chris drove this past weekend. No big deal for most of us, but a really clear indication of her mental alertness, her reaction time, her overall confidence. This will help unleash her a bit. She drove with me, so now we need to get her to drive alone.
-She has been walking more and more, and at a good pace. Today she did about 3 miles, with many hills. Just a few weeks ago she was doing an easy mile on the high school track.
-Chris and I went to Burlington VT this weekend to visit Melissa. As such, we stayed at a hotel, we went out for dinner and breakfast, ran some errands, all the time with Chris really feeling good about getting out. Of course she is really careful about avoiding sick people and not touching door knobs, etc.
-Friday night she and I went to a dinner at the Four Seasons in Boston - very fancy, live orchestra, the works. Chris looked beautiful. She was very engaged in conversation, she ate well, and to top it all off, she actually danced with me - albeit a very slow dance. A few months ago, I was not sure if I would ever have the opportunity to get to dance with her again, or even go out in public, but it is clear she has turned a corner. I can't tell you how happy I was to have the chance to spend a night out with her. It has been a hell of a summer, but the chance to go out on Friday night was so important, and she did great! My parents and siblings were all there and they were all excited to see the progress.
Chris' weight today was 103, still very low but up a pound. Her blood pressure has been pretty steady, averaging about 100/75, so we will reduce one more pill that keeps the pressure up.
As I have stated previously, Sept. 28th will be the magical 100 days since her stem cell transplant. This represents a major milestone. The biggest is that this is the end of the high risk period and when they stop tracking mortality from the stem cell transplant. The doctors have stated that any issues after that point are not related to the transplant and the chemo directly. Of course this has no relationship to the actual disease itself, which we will go back to Boston in December for that testing, but it does represent success that the high risk transplant and chemo were survived.
I am bold enough to ask any readers to send a Congratulations card to Chris so that it arrives on Sept 27th or thereabouts. (The 28th is a Sunday). A simple card with your good wishes would be fantastic. No flowers, no gifts, just a card. I do not think she knows how many people have been praying for her, have asked about her, have read the blog, but she would be amazed.
Address Info is:
Chris Wright
20 Rolling Meadow Drive
Holliston, MA. 01746
USA
I'll add this again in a later posting as a reminder.
I am also going to declare that Sept. 28 is the end of all of the amazing help from friends and neighbors. The meals have been absolutely incredible (trust me, I am the one gaining all the weight), the offers to run errands, the shopping, etc. -they have all been great, but we all need to get Chris back to complete self-reliance. By then she will be feeling very strong and she needs to know that she can live the life she had before she got ill. As well, although I know we all pray this is not needed, many of the patients go through this a second time 12 months later. We'll need your help then, so it's time to give you all a break.
So, to summarize, it is clear that the last week has been a significant upswing for Chris. Your help, prayers, and interest have been remarkable. Everyone has been a part of this progress - Thank You!!
-Chris drove this past weekend. No big deal for most of us, but a really clear indication of her mental alertness, her reaction time, her overall confidence. This will help unleash her a bit. She drove with me, so now we need to get her to drive alone.
-She has been walking more and more, and at a good pace. Today she did about 3 miles, with many hills. Just a few weeks ago she was doing an easy mile on the high school track.
-Chris and I went to Burlington VT this weekend to visit Melissa. As such, we stayed at a hotel, we went out for dinner and breakfast, ran some errands, all the time with Chris really feeling good about getting out. Of course she is really careful about avoiding sick people and not touching door knobs, etc.
-Friday night she and I went to a dinner at the Four Seasons in Boston - very fancy, live orchestra, the works. Chris looked beautiful. She was very engaged in conversation, she ate well, and to top it all off, she actually danced with me - albeit a very slow dance. A few months ago, I was not sure if I would ever have the opportunity to get to dance with her again, or even go out in public, but it is clear she has turned a corner. I can't tell you how happy I was to have the chance to spend a night out with her. It has been a hell of a summer, but the chance to go out on Friday night was so important, and she did great! My parents and siblings were all there and they were all excited to see the progress.
Chris' weight today was 103, still very low but up a pound. Her blood pressure has been pretty steady, averaging about 100/75, so we will reduce one more pill that keeps the pressure up.
As I have stated previously, Sept. 28th will be the magical 100 days since her stem cell transplant. This represents a major milestone. The biggest is that this is the end of the high risk period and when they stop tracking mortality from the stem cell transplant. The doctors have stated that any issues after that point are not related to the transplant and the chemo directly. Of course this has no relationship to the actual disease itself, which we will go back to Boston in December for that testing, but it does represent success that the high risk transplant and chemo were survived.
I am bold enough to ask any readers to send a Congratulations card to Chris so that it arrives on Sept 27th or thereabouts. (The 28th is a Sunday). A simple card with your good wishes would be fantastic. No flowers, no gifts, just a card. I do not think she knows how many people have been praying for her, have asked about her, have read the blog, but she would be amazed.
Address Info is:
Chris Wright
20 Rolling Meadow Drive
Holliston, MA. 01746
USA
I'll add this again in a later posting as a reminder.
I am also going to declare that Sept. 28 is the end of all of the amazing help from friends and neighbors. The meals have been absolutely incredible (trust me, I am the one gaining all the weight), the offers to run errands, the shopping, etc. -they have all been great, but we all need to get Chris back to complete self-reliance. By then she will be feeling very strong and she needs to know that she can live the life she had before she got ill. As well, although I know we all pray this is not needed, many of the patients go through this a second time 12 months later. We'll need your help then, so it's time to give you all a break.
So, to summarize, it is clear that the last week has been a significant upswing for Chris. Your help, prayers, and interest have been remarkable. Everyone has been a part of this progress - Thank You!!
Tuesday, September 9, 2008
Visit back to the Amyloidosis Center Yesterday
Chris and I went back to Boston yesterday based on the concern of her primary last week relative to concerns with a lung X-Ray. It was a bit streange being back in the center as we had not been there since we left in Mid-July, after going daily for 5 weeks.
We met with Dr. Burke who is a pulmonary specialist who we had met with prior to the treatment. Chris had another chest X-Ray (she may be radioactive soon) and we went through the comaprisons with Dr. Burke. I was prepared for some bad news, that is how you start getting in this situation, and was afraid we might see worsening in the lungs. However, that was not the case. He said things looked "impressive". Of course we never now how they use these adjectives as we were confused about the word "unremarkable" a few months ago. Bottom line, he said things were progressing well, that she had increased lung capacity since June, and that he saw no troubling issues.
She also met quickly with the heart specialist and he indicated he felt very comfortable.
All in all a good report and encouraging. We also attented the weekly Amyloidosis Support Group and had some good conversations with new (deer in the headlights) and very experienced (multiple stem cell transplants and oral chemo) patients. We always learn a great deal from others and now feel that we can help others based on the progress Chris has made.
I am currently in Zurih with limited internet access, so will keep this short for today. Chris' Mom is at home with her. She also heard from a frind from High School today - which really made her happy. Thanks to all of you reaching out.
More updates to come based on test results!!
We met with Dr. Burke who is a pulmonary specialist who we had met with prior to the treatment. Chris had another chest X-Ray (she may be radioactive soon) and we went through the comaprisons with Dr. Burke. I was prepared for some bad news, that is how you start getting in this situation, and was afraid we might see worsening in the lungs. However, that was not the case. He said things looked "impressive". Of course we never now how they use these adjectives as we were confused about the word "unremarkable" a few months ago. Bottom line, he said things were progressing well, that she had increased lung capacity since June, and that he saw no troubling issues.
She also met quickly with the heart specialist and he indicated he felt very comfortable.
All in all a good report and encouraging. We also attented the weekly Amyloidosis Support Group and had some good conversations with new (deer in the headlights) and very experienced (multiple stem cell transplants and oral chemo) patients. We always learn a great deal from others and now feel that we can help others based on the progress Chris has made.
I am currently in Zurih with limited internet access, so will keep this short for today. Chris' Mom is at home with her. She also heard from a frind from High School today - which really made her happy. Thanks to all of you reaching out.
More updates to come based on test results!!
Friday, September 5, 2008
Some Bumps, But Moving Forward
This week Chris met with her primary care doctor. We discussed a number of areas:
-there is clearly some fluid in her lungs that has caused an increase amount of coughing, particularly when laying flat. Her doctor had a chest x-ray done which confirmed the fluid. They also found a "patch" (some kind of dark area) on one of her lungs that they need to understand more. This could come from: 1) the chemo 2) some kind of a fungus or 3) something that has always been there but not noticed before. her doctor contacted Boston Medical and they agreed that Chris should come in and meet with the pulmonary specialist who first evaluated Chris as part of the three day diagnosis in May. They also put her on an anti-biotic, hoping it is something that just goes away after treatment. So, back to Boston for a day. We didn't think we would be there so soon, but as always we want to be very aggressive.
-Chris has also not been gaining any weight, and in fact has lost a few pounds (now at 102). This is troubling of course. She really has been eating well. Some of the weight gain a few weeks ago may have simply been fluid, which has now been flushed out with an increased dosage of the diuretic, but in any case she is not gaining weight. Her doctor told her to continue to eat high calorie meals (a complete change from how she ate before) and try to have an Ensure or Boost (high calorie drink) between meals (that has not been well received by Chris as she really hates that stuff).
-We did reduce some of the medications and are continuing to eliminate the original fistful of pills pretty significantly. Some she will take for many months, maybe years, but clear progress on that front.
-Chris' hair is slowly starting to reappear. You still need to wear sunglasses when you are outside with her as the sunlight reflects brightly off her scalp, but there is clear peach fuzz. This is progress.
-Her stamina is clearly increasing. Her walking is much quicker, she is hardly taking naps (it used to be three hours naps when we first got home), and she is generally sleeping well. I see clear signs of general improvements.
-We do have a big formal dinner next Friday in Boston and she had to go find something new and nice that fit her. I have no idea about sizes, but I think she said she is a size "zero" - but not sure how that works. But she did go shopping with her great friends and it was a sign of increased confidence and activity.
-I will also be gone for three nights next week (Europe) so this will be her first real lengthy period without me. For years she used to ask me "don't you need to go on a business trip or something"? when I was hanging around too much and cramping her style. This will be a good test of her getting back to some Independence (not to worry, her Mom will be here).
So we need to have this lung issue addressed, we need to get her to gain weight, and we need to get her to this dinner next week (a real big step). But as always, things are getting better and better slowly but surely.
-there is clearly some fluid in her lungs that has caused an increase amount of coughing, particularly when laying flat. Her doctor had a chest x-ray done which confirmed the fluid. They also found a "patch" (some kind of dark area) on one of her lungs that they need to understand more. This could come from: 1) the chemo 2) some kind of a fungus or 3) something that has always been there but not noticed before. her doctor contacted Boston Medical and they agreed that Chris should come in and meet with the pulmonary specialist who first evaluated Chris as part of the three day diagnosis in May. They also put her on an anti-biotic, hoping it is something that just goes away after treatment. So, back to Boston for a day. We didn't think we would be there so soon, but as always we want to be very aggressive.
-Chris has also not been gaining any weight, and in fact has lost a few pounds (now at 102). This is troubling of course. She really has been eating well. Some of the weight gain a few weeks ago may have simply been fluid, which has now been flushed out with an increased dosage of the diuretic, but in any case she is not gaining weight. Her doctor told her to continue to eat high calorie meals (a complete change from how she ate before) and try to have an Ensure or Boost (high calorie drink) between meals (that has not been well received by Chris as she really hates that stuff).
-We did reduce some of the medications and are continuing to eliminate the original fistful of pills pretty significantly. Some she will take for many months, maybe years, but clear progress on that front.
-Chris' hair is slowly starting to reappear. You still need to wear sunglasses when you are outside with her as the sunlight reflects brightly off her scalp, but there is clear peach fuzz. This is progress.
-Her stamina is clearly increasing. Her walking is much quicker, she is hardly taking naps (it used to be three hours naps when we first got home), and she is generally sleeping well. I see clear signs of general improvements.
-We do have a big formal dinner next Friday in Boston and she had to go find something new and nice that fit her. I have no idea about sizes, but I think she said she is a size "zero" - but not sure how that works. But she did go shopping with her great friends and it was a sign of increased confidence and activity.
-I will also be gone for three nights next week (Europe) so this will be her first real lengthy period without me. For years she used to ask me "don't you need to go on a business trip or something"? when I was hanging around too much and cramping her style. This will be a good test of her getting back to some Independence (not to worry, her Mom will be here).
So we need to have this lung issue addressed, we need to get her to gain weight, and we need to get her to this dinner next week (a real big step). But as always, things are getting better and better slowly but surely.
Tuesday, September 2, 2008
Good Week, But Still Weak
The past week has been both good and bad for Chris. She has been walking more and more and yesterday walked a portion of her old daily route at the state park with the dog and me. This was probably about 2 miles with some very steep hills and difficult paths, but she was very glad to get off the high school track and get back into the woods. This also allows the dog to do her daily swim and get some exercise chasing squirrels.
Chris' weight is at a standstill however. She was 103 yesterday and this is very surprising as she really has been eating very well (or so it appears). She has lost the nausea she had over the previous week and generally is feeling better, although frustrated at the lack of weight gain. This and her lack of strength are very frustrating to her. Yesterday she was unable to husk an ear of corn, and this really gave her an indication as to how weak she is. She will pick up a regular routine with the physical therapist this week and is hoping to get permission to go back to yoga class (with an understanding that she uses her own mat, wipes down everything, etc). I think this will help her out a great deal, just getting out and making progress on rebuilding her strength. One objective she has for this week is to start driving again. She has not driven since May and is concerned she does not "have it all together" yet to start driving. In my opinion she is ready and able, so I think it is more of a confidence thing than any other concern.
The past week was a tough one emotionally for Chris. With Abby going to school as a freshman and Melissa starting classes in Burlington, she really wanted to be there for both of them. She kept saying "what kind of Mom doesn't see their freshman off to college", but we all knew that the move required alot of walking, carrying, set up, etc and the focus needed to be on Abby. This was really tough on Chris, but it was in fact a very long day and we made the right decision. We will go visit both daughters as soon as we possibly can, while also taking Stephen on more college visits.
We see Chris' primary physician this week and are looking for more positive signs from the blood work and hopefully some reductions in her medications.
So overall Chris is getting stronger and feeling better. She still has bouts of much sadness and frustration, but she is anxious to get back into a normal pattern. The kids have been fantastic and the friends and neighbors just continue to help out so much with driving, walks, dinners, etc. These offers help Chris to focus on herself, get stronger, and at the same time stay socially involved. My hope is that by the end of September (the 28th to be exact), she will be totally self sufficient, able to drive, workout, run the house, etc. This will have only been possible with the incredible help of others. In fact, she told me the other day she can't wait to give back to others who could benefit from her help. This is a real sign of progress I think. Thanks to all of you.
Chris' weight is at a standstill however. She was 103 yesterday and this is very surprising as she really has been eating very well (or so it appears). She has lost the nausea she had over the previous week and generally is feeling better, although frustrated at the lack of weight gain. This and her lack of strength are very frustrating to her. Yesterday she was unable to husk an ear of corn, and this really gave her an indication as to how weak she is. She will pick up a regular routine with the physical therapist this week and is hoping to get permission to go back to yoga class (with an understanding that she uses her own mat, wipes down everything, etc). I think this will help her out a great deal, just getting out and making progress on rebuilding her strength. One objective she has for this week is to start driving again. She has not driven since May and is concerned she does not "have it all together" yet to start driving. In my opinion she is ready and able, so I think it is more of a confidence thing than any other concern.
The past week was a tough one emotionally for Chris. With Abby going to school as a freshman and Melissa starting classes in Burlington, she really wanted to be there for both of them. She kept saying "what kind of Mom doesn't see their freshman off to college", but we all knew that the move required alot of walking, carrying, set up, etc and the focus needed to be on Abby. This was really tough on Chris, but it was in fact a very long day and we made the right decision. We will go visit both daughters as soon as we possibly can, while also taking Stephen on more college visits.
We see Chris' primary physician this week and are looking for more positive signs from the blood work and hopefully some reductions in her medications.
So overall Chris is getting stronger and feeling better. She still has bouts of much sadness and frustration, but she is anxious to get back into a normal pattern. The kids have been fantastic and the friends and neighbors just continue to help out so much with driving, walks, dinners, etc. These offers help Chris to focus on herself, get stronger, and at the same time stay socially involved. My hope is that by the end of September (the 28th to be exact), she will be totally self sufficient, able to drive, workout, run the house, etc. This will have only been possible with the incredible help of others. In fact, she told me the other day she can't wait to give back to others who could benefit from her help. This is a real sign of progress I think. Thanks to all of you.
Monday, August 25, 2008
Monday, August 25th
Over the past week, Chris has continued to work hard at increasing her strength. She has been walking everyday at the high school track and then again in the evening after dinner. Each day she gets stronger with a general positive trend. She still has what most people would consider a very low energy level and it is an effort everyday to go perform an exercise that we all take for granted. Still, she is reconditioning herself with a passion to get stronger everyday. That said, I have learned to equate the day to day changes like a bull (positive) stock market. Some days things go up, some days they go down, but the general trend is up. On her down days, she has some nausea and some coughing due to what feels like some increased fluid in her lungs. We will call the doctors today and ask them what they think we should do about this new cough.
Her weight has kicked back into gear and she is now at 107 pounds, but some of that may be due to increased fluid retention. They told me at one point back in June that she may have been carrying around as much as 10 pounds of excess fluid in her body. This was primarily in her ankles, abdomen, and lungs. Her ankles and abdomen seem to be fine, but the lungs and coughing are a bit of a concern.
We go back to her primary physician next week for another check-up, and will see if we can reduce further any medication. As is easy to imagine, Chris is "really, really tired" of taking a fist full of pills throughout the day. She actually has reduced these significantly, but still has a large number to take. We sometimes have to remind her that these are good things, not bad, but it does become a daily grind.
Today is day 64. It really has been an incredibly strange summer. Just after school let out and graduation, we started this ordeal, and now we are down to a week before things get back into gear with Melissa starting school next week, Abby going to school on Friday, and Stephen starting next Tuesday. Chris has felt cheated out of her summer, but it is one we all pray will have been a small price to pay for a long and healthy life.
Chris hopes to try to drive in a few weeks. She is concerned that she doesn't have the strength or the reaction time, but she is anxious to get a little independence. In the meantime, her friends and neighbors have been great. They have taken turns at walking with her, still making some meals, and running errands with her. The daily walks are incredibly valuable. They get her out of the house, they give her some good conversation, and most importantly they push her to exercise and get stronger. I cannot thank her local friends enough as to how much this is appreciated by both of us. The combination of social interaction and exercise is very critical. Despite having their owns lives and daily burdens, the willingness to help Chris has been invaluable.
I have been thinking lately how this limitation of life must impact Chris' attitude. As I think back, Chris has not felt well in over 6-7 months. Imagine everyday waking up, with little strength, not being able to do what she wants, often feeling nauseous, and fearing the future. Most of us get sick for a few days at a time and start feeling normal again. Chris has not felt normal through much of this year. As such, I grow more and more amazed at the incredible internal strength she must have. Day after day after day, this tough lady wakes up, looks at her hairless head and thin body and fights a battle that few can imagine. As I have said before, she is a rock!!
Remember, September 28th is Day 100, a very special day. I will be bold enough to ask that everyone recognize her strength with a card on that day. More on that next month.
More updates next week. Thanks to all for the amazing support, prayers, and interest.
Her weight has kicked back into gear and she is now at 107 pounds, but some of that may be due to increased fluid retention. They told me at one point back in June that she may have been carrying around as much as 10 pounds of excess fluid in her body. This was primarily in her ankles, abdomen, and lungs. Her ankles and abdomen seem to be fine, but the lungs and coughing are a bit of a concern.
We go back to her primary physician next week for another check-up, and will see if we can reduce further any medication. As is easy to imagine, Chris is "really, really tired" of taking a fist full of pills throughout the day. She actually has reduced these significantly, but still has a large number to take. We sometimes have to remind her that these are good things, not bad, but it does become a daily grind.
Today is day 64. It really has been an incredibly strange summer. Just after school let out and graduation, we started this ordeal, and now we are down to a week before things get back into gear with Melissa starting school next week, Abby going to school on Friday, and Stephen starting next Tuesday. Chris has felt cheated out of her summer, but it is one we all pray will have been a small price to pay for a long and healthy life.
Chris hopes to try to drive in a few weeks. She is concerned that she doesn't have the strength or the reaction time, but she is anxious to get a little independence. In the meantime, her friends and neighbors have been great. They have taken turns at walking with her, still making some meals, and running errands with her. The daily walks are incredibly valuable. They get her out of the house, they give her some good conversation, and most importantly they push her to exercise and get stronger. I cannot thank her local friends enough as to how much this is appreciated by both of us. The combination of social interaction and exercise is very critical. Despite having their owns lives and daily burdens, the willingness to help Chris has been invaluable.
I have been thinking lately how this limitation of life must impact Chris' attitude. As I think back, Chris has not felt well in over 6-7 months. Imagine everyday waking up, with little strength, not being able to do what she wants, often feeling nauseous, and fearing the future. Most of us get sick for a few days at a time and start feeling normal again. Chris has not felt normal through much of this year. As such, I grow more and more amazed at the incredible internal strength she must have. Day after day after day, this tough lady wakes up, looks at her hairless head and thin body and fights a battle that few can imagine. As I have said before, she is a rock!!
Remember, September 28th is Day 100, a very special day. I will be bold enough to ask that everyone recognize her strength with a card on that day. More on that next month.
More updates next week. Thanks to all for the amazing support, prayers, and interest.
Monday, August 18, 2008
Chris Update - Monday, Aug. 18
The past week has been a relatively good one for Chris. She has been up in NH for the last 5 days and enjoyed the opportunity to continue to walk regularly, eat well, and sit by the lake. A quick update on her overall status:
-Her weight remains the same at about 102, which is hard to understand as she has been eating well.
-She has increased her walking to about 1.5 miles in the morning and another brisk walk (but less) in the evening.
-Her blood pressure has improved and is now about 104/85 on average - this is very good.
-She does have a cough that troubles her at night when she lays down. This is indicative of some fluid in her lungs, which is what she had back in the month of May. I contacted Boston Medical and they are not as concerned as I am, but we will watch this over the next few weeks and determine if she needs an lung x-ray to understand the extent of any fluid build up.
-Chris' demeanor has been both up and down. Her sister and I have been pretty hard on her about pushing herself, taking her medications, not dwelling on the negative, etc. She usually has been positive, but as I have explained she lapses into a sadness every once in awhile
The big change coming is that we will get back to a more normal, and difficult world soon. Chris' sister Debbie will finally get to live a life where she focuses on herself, her husband and kids, her own life. She has been in Boston away from her own life since early June. Now she is heading home from NH tomorrow, with her 2 boys. The only way I can describe her is as an "Angel". She has been an angel from above who has come to help Chris, me, our children, everyone. She has been focused 100% on Chris or our children for over 2 months, without a complaint, without any frustration, and without a seconds hesitancy to help in any way. She has been an incredible gift. More on Debbie in a later post, but it goes without saying the impact she will have had on her sisters life.
One major milestone coming up is Sept. 28. That will be Day 100 from Chris stem cell replant on - her new birthday. From a medical perspective, this is a very important day as it represents the closing of the risk period for the stem cell transplant and the high dose chemo. June 20 was her "new birthday" and Sept. 28 will be her 100th day. I may ask all readers to hold that date, and send a card, give her a call, stop by if local, etc. I'll give address info later, but I really think it would be great to show Chris, at the completion of this milestone, how much incredible support she has behind her. So if you think about it, make a small note on your calendar.
With Melissa starting school in Burlington, Abby off to school on 8/29, Stephen starting back just after labor day, and Debbie back in NJ. Chris will certainly face a different reality than she has had all summer. She will have to walk daily, do some shopping, do some of the housework, etc. - all on her own. All steps in getting back to a normal life. She will often be exhausted, sad, and frustrated, but as we all know, she is a very tough fighter who is 100% determined to get her life back.
I keep trying to update the blog more often, but is has been a bit crazy between going back and forth to NH, Colorado, MA, NY, etc. I appreciate your patience as you all have been so supportive. Thanks for your continued patience and incredible love and support.
-Her weight remains the same at about 102, which is hard to understand as she has been eating well.
-She has increased her walking to about 1.5 miles in the morning and another brisk walk (but less) in the evening.
-Her blood pressure has improved and is now about 104/85 on average - this is very good.
-She does have a cough that troubles her at night when she lays down. This is indicative of some fluid in her lungs, which is what she had back in the month of May. I contacted Boston Medical and they are not as concerned as I am, but we will watch this over the next few weeks and determine if she needs an lung x-ray to understand the extent of any fluid build up.
-Chris' demeanor has been both up and down. Her sister and I have been pretty hard on her about pushing herself, taking her medications, not dwelling on the negative, etc. She usually has been positive, but as I have explained she lapses into a sadness every once in awhile
The big change coming is that we will get back to a more normal, and difficult world soon. Chris' sister Debbie will finally get to live a life where she focuses on herself, her husband and kids, her own life. She has been in Boston away from her own life since early June. Now she is heading home from NH tomorrow, with her 2 boys. The only way I can describe her is as an "Angel". She has been an angel from above who has come to help Chris, me, our children, everyone. She has been focused 100% on Chris or our children for over 2 months, without a complaint, without any frustration, and without a seconds hesitancy to help in any way. She has been an incredible gift. More on Debbie in a later post, but it goes without saying the impact she will have had on her sisters life.
One major milestone coming up is Sept. 28. That will be Day 100 from Chris stem cell replant on - her new birthday. From a medical perspective, this is a very important day as it represents the closing of the risk period for the stem cell transplant and the high dose chemo. June 20 was her "new birthday" and Sept. 28 will be her 100th day. I may ask all readers to hold that date, and send a card, give her a call, stop by if local, etc. I'll give address info later, but I really think it would be great to show Chris, at the completion of this milestone, how much incredible support she has behind her. So if you think about it, make a small note on your calendar.
With Melissa starting school in Burlington, Abby off to school on 8/29, Stephen starting back just after labor day, and Debbie back in NJ. Chris will certainly face a different reality than she has had all summer. She will have to walk daily, do some shopping, do some of the housework, etc. - all on her own. All steps in getting back to a normal life. She will often be exhausted, sad, and frustrated, but as we all know, she is a very tough fighter who is 100% determined to get her life back.
I keep trying to update the blog more often, but is has been a bit crazy between going back and forth to NH, Colorado, MA, NY, etc. I appreciate your patience as you all have been so supportive. Thanks for your continued patience and incredible love and support.
Thursday, August 7, 2008
Update - Thursday, August 7th
First my apologies for the delayed update. I realize how much support, and therefore genuine interest for Chris exists, and I have been negligent in providing updates. It was much easier back in the apartment when my focus was 100% on Chris, but back at home the normal family demands pile on quickly - Again my apologies.
Chris continues moving forward, with generally daily good days. We are back from NH after 6 days and while up there, she walked daily, ate well, slept generally well and kept busy. She took a few boat rides when we took the kids wakeboarding, went for a few drives around town, and visited my parents a few times. Everyone who sees her after not seeing her for a period of time says,"wow, you look much better than last time I saw you". She of course does not see this, and in fact remains very frustrated that she is not seeing the increased energy and alertness that she hoped she would have. She has been diligent about doing her exercises, but she still feels exhausted by the afternoon. Yesterday was a very good day for her. She did many chores around the house, got the kids organized, paid some bills, etc. She doesn't see her own improvement and as such her morale suffers sometimes. Her sister has been good about not letting her feel down and giving her a kick when she has a "personal pit party" as she calls it.
Unfortunately her weight has not really increased much. She remains at about 102 pounds, which is very surprising to me as she seems to have a good appetite. Compared to early July where she was unable to hold down a half slice of toast, she eats full, albeit not large, meals. Her edema has really been good, with very little swelling in her ankles and her abdomen, so she has lost this water weight which may balance out the increased gain from eating.
One thing that Chris is depressed about is her belief that she is failing as a mother. Our kids are the single most important thing to her, and she is unable to help them significantly. Three examples: I took Melissa to the emergency room late Tuesday night due to severe abdominal pain. To keep it simple, it looks like a gallstone which will be confirmed tomorrow. Chris really wanted to go with Melissa, but as it was 11 pm and we did not get home until just before 3am, this would not have made any sense. Yet Chris feels an obligation to be with her kids when they are ill, like all mothers. Abby is having some oral surgery today (yes, we are a medical nightmare of a family) and Chris wants to be there before and after. But, again, Chris cannot go into the highly infectious hospital environment, so I will take her. Chris has always been taking kids for medical appointments and now she can't - very frustrating for her. Finally, tonight I fly to Colorado Springs with Stephen where he will compete in the US Junior Elite Triathlon Championships. This is the US national championship title for 16-19 year olds and Chris, Stephen, and I had planned this trip since last January. Of course Chris can't make the trip and she was in tears about it last night. I keep trying to remind her that her only job right now is to spend the next few months focusing on getting back to 100% health, so that we can in fact do all the normal things for the rest of her long life. This is just a relatively short period of time when she gets to be totally focused on herself - yet despite my nightly words of encouragement, she still sometimes falls of the bandwagon and gets depressed.
But I don't want to paint too bad of a picture. Chris is getting stronger, more alert, and more active everyday. Her walks, physical therapy, meditation, and chores are becoming part of a daily routine that will position her for a few weeks from now where she will not have her sister and kids at home during the day. She remains a very tough and strong woman who is absolutely committed to beat this thing.
The many cards, phone calls, visits, and prayers have really helped Chris to stay positive. We are both incredibly appreciative for how much love and support has been sent her way. She is soaking it all up and that is what is making her stronger.
I'll do better on the updates!! Thanks to all!!
Chris continues moving forward, with generally daily good days. We are back from NH after 6 days and while up there, she walked daily, ate well, slept generally well and kept busy. She took a few boat rides when we took the kids wakeboarding, went for a few drives around town, and visited my parents a few times. Everyone who sees her after not seeing her for a period of time says,"wow, you look much better than last time I saw you". She of course does not see this, and in fact remains very frustrated that she is not seeing the increased energy and alertness that she hoped she would have. She has been diligent about doing her exercises, but she still feels exhausted by the afternoon. Yesterday was a very good day for her. She did many chores around the house, got the kids organized, paid some bills, etc. She doesn't see her own improvement and as such her morale suffers sometimes. Her sister has been good about not letting her feel down and giving her a kick when she has a "personal pit party" as she calls it.
Unfortunately her weight has not really increased much. She remains at about 102 pounds, which is very surprising to me as she seems to have a good appetite. Compared to early July where she was unable to hold down a half slice of toast, she eats full, albeit not large, meals. Her edema has really been good, with very little swelling in her ankles and her abdomen, so she has lost this water weight which may balance out the increased gain from eating.
One thing that Chris is depressed about is her belief that she is failing as a mother. Our kids are the single most important thing to her, and she is unable to help them significantly. Three examples: I took Melissa to the emergency room late Tuesday night due to severe abdominal pain. To keep it simple, it looks like a gallstone which will be confirmed tomorrow. Chris really wanted to go with Melissa, but as it was 11 pm and we did not get home until just before 3am, this would not have made any sense. Yet Chris feels an obligation to be with her kids when they are ill, like all mothers. Abby is having some oral surgery today (yes, we are a medical nightmare of a family) and Chris wants to be there before and after. But, again, Chris cannot go into the highly infectious hospital environment, so I will take her. Chris has always been taking kids for medical appointments and now she can't - very frustrating for her. Finally, tonight I fly to Colorado Springs with Stephen where he will compete in the US Junior Elite Triathlon Championships. This is the US national championship title for 16-19 year olds and Chris, Stephen, and I had planned this trip since last January. Of course Chris can't make the trip and she was in tears about it last night. I keep trying to remind her that her only job right now is to spend the next few months focusing on getting back to 100% health, so that we can in fact do all the normal things for the rest of her long life. This is just a relatively short period of time when she gets to be totally focused on herself - yet despite my nightly words of encouragement, she still sometimes falls of the bandwagon and gets depressed.
But I don't want to paint too bad of a picture. Chris is getting stronger, more alert, and more active everyday. Her walks, physical therapy, meditation, and chores are becoming part of a daily routine that will position her for a few weeks from now where she will not have her sister and kids at home during the day. She remains a very tough and strong woman who is absolutely committed to beat this thing.
The many cards, phone calls, visits, and prayers have really helped Chris to stay positive. We are both incredibly appreciative for how much love and support has been sent her way. She is soaking it all up and that is what is making her stronger.
I'll do better on the updates!! Thanks to all!!
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