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.
Sunday, November 16, 2008
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!!
Monday, July 28, 2008
Monday - July 28
Just a quick update as I have many requests to keep the updates coming. Chris continues to feel stronger and do more. She has been going to the track daily, has her physical therapy two times per week, and even speaks with a stronger voice and a bit more confidence. The medical team called today to check in on her and they went through a number of issues, including her weight (actually down a few pounds due to reduced swelling), her continued insomnia, and her mental state. The doctors response was one of guidance to be more patient. They reminded Chris that she went through an incredibly difficult and risky procedure and that she needs to acknowledge this reality. Her life will be different for another few months, and she needs to accept this. To me the big question will be how she is doing in September. Will she bored at home, unable to go into big crowds, will she get back into a regular routine, will she focus on nothing but building her strength back. I think the fear of not knowing what the future is going to bring is probably the most difficult thing to acknowledge for her and all of us right now.
We did hear some very sobering news this week. One of the patients going through the Amyloid program passed away as a direct result of the stem cell transplant and the high dose chemo. I have written about her earlier (she had been taken from her apartment in an ambulance) and had been in intensive care for the last few weeks. Her husband and her brother were her caregivers and I got to know them as we ate lunch together. Chris knew her and I broke the news to her on Saturday. We knew going into this that there was a clear chance of death that could result. The impossible job of the doctors is to make the tough call as to who goes through the treatment and who doesn't. The chance of a complete response is 50%, but the chance of death is also very real. But the impact of doing nothing is the one nobody wants to face. We were reminded of this harsh reality this week. So far we have been very blessed.
Chris' siblings have all been here the last few days. It has been great to have them all helping, keeping Chris busy, reminding her of how important it is to stay positive. She has also been getting many calls and cards. She is starting to realize the incredible support she has from an incredible network of friends. An amazing number of folks at my work ask about her regularly, have put her on their prayer list, and have sent an incredible amount of positive energy. Friends from my high school and her high school have reached out, some she has not spoken to in years. Neighbors who moved away years ago, friends of her parents, it just goes on and on. I cannot state how much this has meant to her and me. The unbelievable love fore this woman is almost impossible to comprehend.
I will get her up to the lake after a Doctors appointment on Thursday. I will provide an update then. Again, I have no idea how to thank everyone, but I have learned alot about being a good friend, a good sibling, a good colleague, and hopefully the best possible husband.
A special thanks to Amy who reads the blog to Tim regularly. It means a great deal to him!
We did hear some very sobering news this week. One of the patients going through the Amyloid program passed away as a direct result of the stem cell transplant and the high dose chemo. I have written about her earlier (she had been taken from her apartment in an ambulance) and had been in intensive care for the last few weeks. Her husband and her brother were her caregivers and I got to know them as we ate lunch together. Chris knew her and I broke the news to her on Saturday. We knew going into this that there was a clear chance of death that could result. The impossible job of the doctors is to make the tough call as to who goes through the treatment and who doesn't. The chance of a complete response is 50%, but the chance of death is also very real. But the impact of doing nothing is the one nobody wants to face. We were reminded of this harsh reality this week. So far we have been very blessed.
Chris' siblings have all been here the last few days. It has been great to have them all helping, keeping Chris busy, reminding her of how important it is to stay positive. She has also been getting many calls and cards. She is starting to realize the incredible support she has from an incredible network of friends. An amazing number of folks at my work ask about her regularly, have put her on their prayer list, and have sent an incredible amount of positive energy. Friends from my high school and her high school have reached out, some she has not spoken to in years. Neighbors who moved away years ago, friends of her parents, it just goes on and on. I cannot state how much this has meant to her and me. The unbelievable love fore this woman is almost impossible to comprehend.
I will get her up to the lake after a Doctors appointment on Thursday. I will provide an update then. Again, I have no idea how to thank everyone, but I have learned alot about being a good friend, a good sibling, a good colleague, and hopefully the best possible husband.
A special thanks to Amy who reads the blog to Tim regularly. It means a great deal to him!
Friday, July 25, 2008
Friday - July 25th
Chris continues to get a bit stronger every day, with increased weight, increased stamina and less nausea. While she is still very weak compared to what she started out at, she does exercise daily with walks, stretching, and some light weights. Her personal trainer now comes to the house twice a week and gives her a series of exercises that she does daily. She is very tired after these circuits, but she knows they are helping. The good news (for me) is that the personal trainer is a 50 year old woman, not the stud I was worried about.
Chris is up to 105 pounds, some of which is edema. Nevertheless she is clearly gaining weight and being much more active. Her blood pressure is still very low and she is on many medications for this, antibiotics, nausea, etc. She is starting to really detest this constant potpourri of pills, but she has no choice.
There are two issues she is struggling with. She is not sleeping well at all and is now in the habit of waking up almost every night for a few hours. She falls asleep quickly, usually wakes up around 2 or 3 am, and then sleeps again until morning. We are not sure if this is due to the medication, too long of a nap in the afternoon or just what. She is dealing with it, but it does mess up her daily rhythm a bit. My guess is that she is going downstairs ans secretly watching watching season 9 of Friends.
The other issue is one that concerns me much more, and that is a general feeling of depression that she still feels. I spoke to the medical team about that, and they indicate that this is not unusual, particularly in women (sorry, I'm just quoting). Chris occasionally feels like a "victim" or asks the question "what did I do to serve this?" During these low periods, she feels less energetic, less mentally sharp, and sleeps often (typical of course). This may be compounding the sleepless nights.
This week we will get her up to the lake house in NH where she will be able to really relax and not worry about the stresses around the house. I know she is anxious to get up there, but we needed to make sure the ride was ok and she did not have serious nausea.
Overall she is still very frail, but without a doubt she continues getting better and better. We will work on mental state and get her enjoying the rest of the summer. Abby leaves for school in 4 weeks, so it will be important that she knows Chris is doing well.
The calls and cards are greatly appreciated, they mean a great deal to Chris, so thank you.
Finally to the mystery e-mailer who sent the attached picture - please identify yourself.
Sunday, July 20, 2008
Upward Trajectory - Sunday, July 20
After a week of delayed updates about Chris, I am well overdue to the many many people who have expressed their support, love, and prayers for Chris. My apologies.
The news is good, in fact I believe very good, although she may not agree. Over the last seven days, she has:
- gained 6 pounds
- walked every day about 3 or 4 times for 15 minutes or so up and down our driveway (with an incline)
- had an actual appetite to the point of asking for seconds. She has a complete bagel, some fruit, OJ, and toast for breakfast usually, and a complete, albeit light, lunch and dinner. A few times this past week she ate so much that she complained about being completely full.
- She has had some relatively good energy and can talk on the phone with a strong voice.
- The most telling indicator of progress was when she lit in to me for about 3 minutes for pushing multi-vitamins (which she is supposed to take), saying she is tired of me telling her what to do and to let her make her "own damn decisions". Now that is the Chris we know and love.
So overall, some real good forward progress in the last week. But to be honest, there have been a few bumps. She still has the swelling in her legs, her blood pressure is still very low, and occasionally she stills feels nauseous. These have all improved or stayed the same. The bigger issue is her occasional sadness or depression. She sometimes has bouts of feeling very down, mostly due to frustration that she doesn't have the energy or the drive that she would like, as well as the feeling of not knowing what will be the end result of all of this (we will not find out until December). Her sister Debbie and I have tried to be good coaches, supporters, encouragers, and for the most part she is positive. Yet, she has really had some down moments.
We were told to expect some of this, and she knows any negativity is in conflict with all the positive vibes she has received from an incredible array of friends and supporters. She has heard from high school friends from her years in Belgium, she has heard from friends of friends, and she has been in the prayers of literally hundreds of places of worship around the world. She truly knows how many people are fighting this with her and when she is reminded of that, it really turns her around.
We met with her primary care physician ("family doctor" for those outside the US), and she hardly recognized Chris since she had last seen her back in May. Twenty-five pounds, no muscle mass, and no hair will really change a person. Yet, her doctor gave her some really good words of encouragement and prescribed a home Physical Therapist to start getting Chris back into shape. Chris can't go to the gym or even yoga class due to too much risk of infection. Thus a visiting physical therapist will be coming to the house. I never thought I'd be happy that a young stud with bulging muscles give my wife a private workout session, but hey, if that's what it takes to get her back into shape, I'm all for it (I think).
This coming week will be a transition from a very sedentary week of staying low, to one of being more active, increasing the frequency and length of walking (hopefully the high school track), seeing more visitors, and doing some things around the house that she enjoys, e.g. gardening, maybe some simple cooking, and reading. She did listen to a book on tape from my aunt and that worked out very well.
It is nice to be home. I have been working at my home office and that sure saves on the commuting time. More importantly Chris is much more comfortable at home. As well, it is easier to care for her at home, although maybe that is simply because she is doing so much better. I will associate the Boston apartment with daily routines of cleaning up vomit and other things, (e.g. hair), and things are much less messier nowadays.
So overall, things are clearly going in the right direction. We need to get her out of her occasional funk, and that will come in time as she gets more energy, gets back into her routine, and gets some time up in New Hampshire.
I can't tell you how much the support you all have provided has been. The phone calls, the notes, the flowers, the dinners, and more importantly the prayers and good wishes remain beyond belief. Just reading the blog shows you care.
Thanks to all.
I'll provide another update on Chris next weekend, if not earlier, but until then, please know she is doing better and better each and every day.
The news is good, in fact I believe very good, although she may not agree. Over the last seven days, she has:
- gained 6 pounds
- walked every day about 3 or 4 times for 15 minutes or so up and down our driveway (with an incline)
- had an actual appetite to the point of asking for seconds. She has a complete bagel, some fruit, OJ, and toast for breakfast usually, and a complete, albeit light, lunch and dinner. A few times this past week she ate so much that she complained about being completely full.
- She has had some relatively good energy and can talk on the phone with a strong voice.
- The most telling indicator of progress was when she lit in to me for about 3 minutes for pushing multi-vitamins (which she is supposed to take), saying she is tired of me telling her what to do and to let her make her "own damn decisions". Now that is the Chris we know and love.
So overall, some real good forward progress in the last week. But to be honest, there have been a few bumps. She still has the swelling in her legs, her blood pressure is still very low, and occasionally she stills feels nauseous. These have all improved or stayed the same. The bigger issue is her occasional sadness or depression. She sometimes has bouts of feeling very down, mostly due to frustration that she doesn't have the energy or the drive that she would like, as well as the feeling of not knowing what will be the end result of all of this (we will not find out until December). Her sister Debbie and I have tried to be good coaches, supporters, encouragers, and for the most part she is positive. Yet, she has really had some down moments.
We were told to expect some of this, and she knows any negativity is in conflict with all the positive vibes she has received from an incredible array of friends and supporters. She has heard from high school friends from her years in Belgium, she has heard from friends of friends, and she has been in the prayers of literally hundreds of places of worship around the world. She truly knows how many people are fighting this with her and when she is reminded of that, it really turns her around.
We met with her primary care physician ("family doctor" for those outside the US), and she hardly recognized Chris since she had last seen her back in May. Twenty-five pounds, no muscle mass, and no hair will really change a person. Yet, her doctor gave her some really good words of encouragement and prescribed a home Physical Therapist to start getting Chris back into shape. Chris can't go to the gym or even yoga class due to too much risk of infection. Thus a visiting physical therapist will be coming to the house. I never thought I'd be happy that a young stud with bulging muscles give my wife a private workout session, but hey, if that's what it takes to get her back into shape, I'm all for it (I think).
This coming week will be a transition from a very sedentary week of staying low, to one of being more active, increasing the frequency and length of walking (hopefully the high school track), seeing more visitors, and doing some things around the house that she enjoys, e.g. gardening, maybe some simple cooking, and reading. She did listen to a book on tape from my aunt and that worked out very well.
It is nice to be home. I have been working at my home office and that sure saves on the commuting time. More importantly Chris is much more comfortable at home. As well, it is easier to care for her at home, although maybe that is simply because she is doing so much better. I will associate the Boston apartment with daily routines of cleaning up vomit and other things, (e.g. hair), and things are much less messier nowadays.
So overall, things are clearly going in the right direction. We need to get her out of her occasional funk, and that will come in time as she gets more energy, gets back into her routine, and gets some time up in New Hampshire.
I can't tell you how much the support you all have provided has been. The phone calls, the notes, the flowers, the dinners, and more importantly the prayers and good wishes remain beyond belief. Just reading the blog shows you care.
Thanks to all.
I'll provide another update on Chris next weekend, if not earlier, but until then, please know she is doing better and better each and every day.
Sunday, July 13, 2008
Sunday - Uneventul Day (so far)
Not much to post today. Chris had an OK night last night with some issues, but slept in and has done pretty well today. She walked up and down the driveway 4 times, had some food, and actually gained vs. yesterday.
She is frustrated that she is "going to lose her entire summer", but with a little prompting she remembers that this is a small price to pay if she can beat this thing. Hopefully we can get her up to NH in a few weeks and she can sit by the lake and just enjoy the views, nice weather, and relaxation. Her goal is to be strong enough that she can join me when I take Abby to college at the end of August.
I think I will take the next few days off in writing the blog, as I am not sure there is going to be much new news. I'll plan on providing an update next weekend with a full report as to how the week went for Chris.
Let me just say how thankful we are that she has so many people interested in her, praying for her, and sending their love. Everyday she gets stronger and everyday she tells me how lucky she is that so many people are rooting for her.
Thanks to all of you...
She is frustrated that she is "going to lose her entire summer", but with a little prompting she remembers that this is a small price to pay if she can beat this thing. Hopefully we can get her up to NH in a few weeks and she can sit by the lake and just enjoy the views, nice weather, and relaxation. Her goal is to be strong enough that she can join me when I take Abby to college at the end of August.
I think I will take the next few days off in writing the blog, as I am not sure there is going to be much new news. I'll plan on providing an update next weekend with a full report as to how the week went for Chris.
Let me just say how thankful we are that she has so many people interested in her, praying for her, and sending their love. Everyday she gets stronger and everyday she tells me how lucky she is that so many people are rooting for her.
Thanks to all of you...
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