Chris is very very happy to be home and had a relatively good day today. She did well most of the day, but is easily fatiuged and not too interested in eating. She did get outside this morning and even spent a minte watering her gardens, something she really enjoys. The neighbors next door stopped by to say hello and it was good for her to spend some time interacting, but she is more of a listener than a conversationalist right now. The nuasea medicine makes her very groggy.
She did get sick once, but that may have been due to the fact that she ate more at one sitting than she has in a long time. Our plan is to slowly reintroduce her to food she enjoys and not give her too much that it makes her ill. She was still down at 97 pounds today, and her blood pressure is also very low, so we will have make sure we stay on top of that.
Chris has been getting many cards and she enjoys getting these. I even received a card today with the Friends theme song playing when you open it (thanks Jonathan)- it's now permanently etched deep in my brain.
I think this will be a very slow week for her, with lots of rest, some new foods, keeping her nausea down and her blood pressure and weight up. She is very happy to see and hear the family again. Her sister Debbie has been an incredible help - beyond words. She must be as tired as Chris and I are, she just nevcr stops helping.
It is a bit strange being way out here in the country. Instead of sirens and elevators and all the various city noises, they have crickets and birds and dogs here. Being the city people that Chris and I are (after 30+ days), it's certainly different. Chris had a craving for a rueben sandwich from a certain place this afternoon - 10 miles away and 30 minutes round trip. I jumped in my car, and got it, versus taking the elevator down to the food court and deli. It wouln't have been so bad if she ate a little of it, but oh well.
Overall a good day, where she is very comfortable, slowly getting into things at home, trying to eat anything other than food I have prepared. I don't beleive the nausea is all my fault, but many of my friends are convinced of it. We'll know in a few days I guess.
Saturday, July 12, 2008
Friday, July 11, 2008
July 11 - Home, Sweet Home
At 1:53 this afternoon, Chris got her walking papers to come home. It was a long day at the center, with lots of instructions, warnings, responses to my long list of questions, and of course some hugs. We got home 35 minutes later and it was a fantastic feeling. I can't describe the feeling of sitting in the house, with the family, with the pets surrounded by our own belongings. Chris could not get out of Boston fast enough, she didn't even yell at me to "slow down" like she usually does.
She has detailed instructions on diet, driving, pets, immunizations, alcohol, gardening, and even diaper changing. Clearly the risk of infection still remains. The metric for mortality rate is tracked for 100 days post replant, and we are on day 21, so we have another three months or so of being extra cautious. Limited exposure, no crowds, no babies, no cat litter, etc. She will start an immunization process over the next 12-24 months (measles, polio, rubella, etc.) that will slowly rebuild her lost immunity system.
We go back for three days of tests on December 8th. This will be very scary as it is then that we will learn what the hematological response was. Complete, partial, or none. As I said, we want HCR. I have received some notes and emails that said HCR stood for: Hooray, Chris Recovered or Hot Chris Reborn. Her numbers today were:
Measurement / Chris / Normal Range / Result
WBC (white) /4.7/ 4.0 - 11.0 / Normal
RBC (red) / 3.6/ 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 11.5/ 12 - 16 / LOW
Platelet / 116/ 150 - 400 / LOW but getting closer all the time
I asked the team today about 4 dozen questions that I had written down. All kinds of questions about Chris' heart, her lungs, average recovery time, reduction in her heart wall, edema, appetite, exercise, etc. Suffice it to say I drove them crazy, but I walk out very comfortable that I know almost all a civilian could know about amyloidosis. I have read every research paper ever published by the BU team and have arranged email alerts for any new publications referencing them or the center or the disease. I also had them print out graphs of all her blood counts over the last 30 days. I asked for a digital version (on a dvd or cd) of all of her charts , but they told me paper only (I tried).
Chris got home, sat on the couch, and could not describe how happy she was to be home. She lasted about 15 minutes before declaring she needed a nap and wanted to get into her own bed. I have not seen her move that fast in months. She really needed to fell at home, and nothing does more than crawling into her own bed. Our dog went crazy when we got home, but Chris can't pet her, so it drives them both crazy.
I've avoided bringing up the subject of Friends the last few days, but at this point, I kind of consider watching the seasons like running a marathon. I'm at mile 21 (season 8) and I can't quit now. I've come this far, if I can just hang on a little longer. My body may not hit the proverbial "wall", but my brain is pretty close to exploding. Chris and I are the little engine that can: "We think we can, we think we can" finish all ten seasons, but trust me, this hurts.
My kids believe that they are masters at getting their teachers "off topic". They are so proud when they get their teachers to wade into the weeds in class and never get to their lesson plan. Well, they have accused me of getting "off topic" here on the blog, and editorializing on some issue not relevant to Chris. I agree that has happened, but this whole experience has just been an incredible learning process which I have soaked up like a sponge. The disease, the medicine, the interactions, the hierarchy, the personal touches, the surprising lack of a well defined treatment approach, it is all just amazing. In the next week or so, I will expound on my Top 10 (like David Letterman's) Lessons Learned. This will be for the benefit of my own mental therapy, but maybe someone can benefit from it. Chris benefited from Jen's reaching out (see the very first post here about the newspaper article) to the press and TV, and maybe one person will benefit from the insane ramblings of my lunacy. See there I go again, off topic, sorry.
So Chris has completed one leg of her journey to health. It was an extremely bumpy ride, with many potholes, speed bumps, flat tires, ground delays, etc, but she has reached this stage of the long journey successfully. Not a single infection, no mouth sores, no trips to the ICU. She does have incredible weight loss (97 lbs. /44 kilo's), but now our goal it to fatten her up, build the muscle tone she had, and get her back to a more normal life.
More updates (and possible meanderings) tomorrow, but for now, tonight, at home, all is good for this wonderfully tough ladie. As I have said before, she is my hero! And we are home, sweet home!!!
She has detailed instructions on diet, driving, pets, immunizations, alcohol, gardening, and even diaper changing. Clearly the risk of infection still remains. The metric for mortality rate is tracked for 100 days post replant, and we are on day 21, so we have another three months or so of being extra cautious. Limited exposure, no crowds, no babies, no cat litter, etc. She will start an immunization process over the next 12-24 months (measles, polio, rubella, etc.) that will slowly rebuild her lost immunity system.
We go back for three days of tests on December 8th. This will be very scary as it is then that we will learn what the hematological response was. Complete, partial, or none. As I said, we want HCR. I have received some notes and emails that said HCR stood for: Hooray, Chris Recovered or Hot Chris Reborn. Her numbers today were:
Measurement / Chris / Normal Range / Result
WBC (white) /4.7/ 4.0 - 11.0 / Normal
RBC (red) / 3.6/ 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 11.5/ 12 - 16 / LOW
Platelet / 116/ 150 - 400 / LOW but getting closer all the time
I asked the team today about 4 dozen questions that I had written down. All kinds of questions about Chris' heart, her lungs, average recovery time, reduction in her heart wall, edema, appetite, exercise, etc. Suffice it to say I drove them crazy, but I walk out very comfortable that I know almost all a civilian could know about amyloidosis. I have read every research paper ever published by the BU team and have arranged email alerts for any new publications referencing them or the center or the disease. I also had them print out graphs of all her blood counts over the last 30 days. I asked for a digital version (on a dvd or cd) of all of her charts , but they told me paper only (I tried).
Chris got home, sat on the couch, and could not describe how happy she was to be home. She lasted about 15 minutes before declaring she needed a nap and wanted to get into her own bed. I have not seen her move that fast in months. She really needed to fell at home, and nothing does more than crawling into her own bed. Our dog went crazy when we got home, but Chris can't pet her, so it drives them both crazy.
I've avoided bringing up the subject of Friends the last few days, but at this point, I kind of consider watching the seasons like running a marathon. I'm at mile 21 (season 8) and I can't quit now. I've come this far, if I can just hang on a little longer. My body may not hit the proverbial "wall", but my brain is pretty close to exploding. Chris and I are the little engine that can: "We think we can, we think we can" finish all ten seasons, but trust me, this hurts.
My kids believe that they are masters at getting their teachers "off topic". They are so proud when they get their teachers to wade into the weeds in class and never get to their lesson plan. Well, they have accused me of getting "off topic" here on the blog, and editorializing on some issue not relevant to Chris. I agree that has happened, but this whole experience has just been an incredible learning process which I have soaked up like a sponge. The disease, the medicine, the interactions, the hierarchy, the personal touches, the surprising lack of a well defined treatment approach, it is all just amazing. In the next week or so, I will expound on my Top 10 (like David Letterman's) Lessons Learned. This will be for the benefit of my own mental therapy, but maybe someone can benefit from it. Chris benefited from Jen's reaching out (see the very first post here about the newspaper article) to the press and TV, and maybe one person will benefit from the insane ramblings of my lunacy. See there I go again, off topic, sorry.
So Chris has completed one leg of her journey to health. It was an extremely bumpy ride, with many potholes, speed bumps, flat tires, ground delays, etc, but she has reached this stage of the long journey successfully. Not a single infection, no mouth sores, no trips to the ICU. She does have incredible weight loss (97 lbs. /44 kilo's), but now our goal it to fatten her up, build the muscle tone she had, and get her back to a more normal life.
More updates (and possible meanderings) tomorrow, but for now, tonight, at home, all is good for this wonderfully tough ladie. As I have said before, she is my hero! And we are home, sweet home!!!
Thursday, July 10, 2008
Thursday July 10 - Big Day Tomorrow
Today was another day off from the hospital for us. Chris' numbers had been good on Wednesday, and they told us that tomorrow will be a big day. Thus Chris slept in, got a few walks in, made a few phone calls, and took many naps. She also suffered from nausea but only dry heaves, no lost meals. They gave her a new medicine that seems to push things through her stomach quickly before she can lose it. That said, she continues to get thinner and thinner. She has lost an incredible amount of muscle mass and to be honest, looks very frail. She has a great deal of work in front of her to rebuild herself. Yet, there is no question that she will - she is being tough, positive, and determined. Chris' goal is to beat me in tennis (hardly ever happend before any of this, but) in the next year.
Tomorrow we go through a series of tests, instructions, and a huge amount of paperwork. They will give her a final medicine protocol, instructions for frequent visits with her primary physician. schedule follow up appointments at BU, etc. Then Chris wants to get in the car at the end of the day, and go directly home. Home means back to Holliston, to her own bed, her own gardens, her own things. We may have to be back for another visit next week, but that would be a day trip.
We do have the apartment until next Wednesday, so the kids may have their friends into Boston for a night or two on the town. It would be great to walk to some great restaurants, sit in the park and read the paper with a coffee, stroll around the city, etc. Someday we'll come back for a month, with Chris totally healthy and celebrate the incredible success of her recovery.
I won't go into percentages here (I can quote them to the tenth of a percent), but what we are looking for is what is called an HCR - hematological complete response. This is where the light chain proteins (amyloid) are no longer being produced by the defective plasma cells. Partial response or no response are other outcomes, but all we are thinking about is HCR. This is my new favorite acronym, HCR, with C being the most critical letter. Everyone who has prayed, sent cards, flowed their positive thoughts Chris' way, have all made a huge difference. The message you were sending made the difference. Chris went through stem cell replant and the chemo with flying colors (and some flying vomit (sorry)). Now what we need is the same wish for HCR!! We will not know what the response was for another 6 months, but if we all think and pray HCR, it will be huge.
So, the journey continues, it doesn't end tomorrow, or in six months, as she will be tested always. But the journey has been a good one so far. We have a very tired woman, who feels beaten up, looks even worse, and yet she smiles for me everyday. The smile tomorrow when we drive into our driveway will be a great one to watch.
I know I have an incredible number of people to thank for their support. I don't know how and I don't know when to say thanks, but the list is amazing, I am awe-struck. Over the last week, over 960 people have read this blog. The love, interest, and support for Chris has been beyond comprehension and is a testament to the love she has been sent. Despite my editorial ramblings, poor writing skills and bad grammar, you all overcome that to check on Chris. Again, just amazing.
So tomorrow is a big day, I'll update the blog with how it went, and how glad she is to be home.
Have a great day, I know we will!!!
Tomorrow we go through a series of tests, instructions, and a huge amount of paperwork. They will give her a final medicine protocol, instructions for frequent visits with her primary physician. schedule follow up appointments at BU, etc. Then Chris wants to get in the car at the end of the day, and go directly home. Home means back to Holliston, to her own bed, her own gardens, her own things. We may have to be back for another visit next week, but that would be a day trip.
We do have the apartment until next Wednesday, so the kids may have their friends into Boston for a night or two on the town. It would be great to walk to some great restaurants, sit in the park and read the paper with a coffee, stroll around the city, etc. Someday we'll come back for a month, with Chris totally healthy and celebrate the incredible success of her recovery.
I won't go into percentages here (I can quote them to the tenth of a percent), but what we are looking for is what is called an HCR - hematological complete response. This is where the light chain proteins (amyloid) are no longer being produced by the defective plasma cells. Partial response or no response are other outcomes, but all we are thinking about is HCR. This is my new favorite acronym, HCR, with C being the most critical letter. Everyone who has prayed, sent cards, flowed their positive thoughts Chris' way, have all made a huge difference. The message you were sending made the difference. Chris went through stem cell replant and the chemo with flying colors (and some flying vomit (sorry)). Now what we need is the same wish for HCR!! We will not know what the response was for another 6 months, but if we all think and pray HCR, it will be huge.
So, the journey continues, it doesn't end tomorrow, or in six months, as she will be tested always. But the journey has been a good one so far. We have a very tired woman, who feels beaten up, looks even worse, and yet she smiles for me everyday. The smile tomorrow when we drive into our driveway will be a great one to watch.
I know I have an incredible number of people to thank for their support. I don't know how and I don't know when to say thanks, but the list is amazing, I am awe-struck. Over the last week, over 960 people have read this blog. The love, interest, and support for Chris has been beyond comprehension and is a testament to the love she has been sent. Despite my editorial ramblings, poor writing skills and bad grammar, you all overcome that to check on Chris. Again, just amazing.
So tomorrow is a big day, I'll update the blog with how it went, and how glad she is to be home.
Have a great day, I know we will!!!
Wednesday, July 9, 2008
Wednesday, July 9 - Land Ho!!
Without having to squint to hard, there is clearly a light at the end of the tunnel today. In fact it is big and bright, we can see it plain as day. Chris got the green light we have been waiting for and we are heading home this weekend. As Marv Albert would say: "YES"!!!
Overall things are good enough and Chris successfully lobbied for a discharge and she got it. So unless things change dramatically, we'll be home by Saturday. We most likely will have to come back for one day next week, but that works for us.
Her numbers are as follows:
Measurement / Chris / Normal Range / Result
WBC (white) /5.8/ 4.0 - 11.0 / Normal
RBC (red) / 3.2/ 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 10 / 12 - 16 / LOW
Platelet / 102 / 150 - 400 / LOW but significant improvement
So the white blood cells and the platelets were the key measurements, and they are either within range, or rapidly going in that direction. Clearly, the stem cells have grafted into the bone marrow and Chris is now producing the blood cells on her own, after a long 18 days (clearly these stem cells took their time kicking into gear).
They also removed the chest catheter today. Very interesting. The doctor who did it said that I could stay if I promised not to pass out. I told her she must be kidding, as not only did I want to watch, but I wanted to actually do the removal procedure myself. I guess I have not fully earned my place on the medical team as I got a pretty direct "NO" to my request. The catheter is literally just pulled out. It is a 14 inch tube that went up to her neck and down her jugular vein into her right atrium in her heart. They simply pull it. I at least asked to keep it as a memento - no go on that request either.
So, assuming everything goes OK the next two days, we are "outta here". Five weeks have sometimes seemed like 5 months, but we have it so much easier than 99% of the patients who are hundreds or thousands of miles from their home and families.
So that is all good news. There is some bad news. Chris continues to experience vomiting. Nobody can get it under control, and she has no appetite. She keeps having a craving for something (raspberry sorbet, Hostess cupcakes, spaghetti), I run to the store to get it, and by the time I return and she sees it, it makes her vomit thinking of it. She is down to 101 pounds, and based on what she is eating and not keeping down, she will most likely be under 100 in the next day or two. The doctors explain that her reaction to the chemo is in her GI track and that this will eventually resolve itself. However, they also told her that she better start eating more or her recovery will be much longer as she won't have the nourishment to get into shape. Yet, as we all know, you can't make a nauseous person eat, no matter how much you plead. So, I guess the trick is to let the GI system recover on it's own, and not to push her. I do wonder if it is my cooking that is the problem here, and I am starting to take it a little bit personally, but in the end I know that no matter who cooks it, she just can't stomach it.
So we have a ticket for this weekend, her blood counts are up and we have prevented infection (the biggest risk) and now we just need to get her stomach settled and start the rebuilding process. We can't give a sigh of relief yet by any means, but we can certainly feel very positive about the progress. It has been long row to hoe, but I expect some blooming soon.
Overall things are good enough and Chris successfully lobbied for a discharge and she got it. So unless things change dramatically, we'll be home by Saturday. We most likely will have to come back for one day next week, but that works for us.
Her numbers are as follows:
Measurement / Chris / Normal Range / Result
WBC (white) /5.8/ 4.0 - 11.0 / Normal
RBC (red) / 3.2/ 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 10 / 12 - 16 / LOW
Platelet / 102 / 150 - 400 / LOW but significant improvement
So the white blood cells and the platelets were the key measurements, and they are either within range, or rapidly going in that direction. Clearly, the stem cells have grafted into the bone marrow and Chris is now producing the blood cells on her own, after a long 18 days (clearly these stem cells took their time kicking into gear).
They also removed the chest catheter today. Very interesting. The doctor who did it said that I could stay if I promised not to pass out. I told her she must be kidding, as not only did I want to watch, but I wanted to actually do the removal procedure myself. I guess I have not fully earned my place on the medical team as I got a pretty direct "NO" to my request. The catheter is literally just pulled out. It is a 14 inch tube that went up to her neck and down her jugular vein into her right atrium in her heart. They simply pull it. I at least asked to keep it as a memento - no go on that request either.
So, assuming everything goes OK the next two days, we are "outta here". Five weeks have sometimes seemed like 5 months, but we have it so much easier than 99% of the patients who are hundreds or thousands of miles from their home and families.
So that is all good news. There is some bad news. Chris continues to experience vomiting. Nobody can get it under control, and she has no appetite. She keeps having a craving for something (raspberry sorbet, Hostess cupcakes, spaghetti), I run to the store to get it, and by the time I return and she sees it, it makes her vomit thinking of it. She is down to 101 pounds, and based on what she is eating and not keeping down, she will most likely be under 100 in the next day or two. The doctors explain that her reaction to the chemo is in her GI track and that this will eventually resolve itself. However, they also told her that she better start eating more or her recovery will be much longer as she won't have the nourishment to get into shape. Yet, as we all know, you can't make a nauseous person eat, no matter how much you plead. So, I guess the trick is to let the GI system recover on it's own, and not to push her. I do wonder if it is my cooking that is the problem here, and I am starting to take it a little bit personally, but in the end I know that no matter who cooks it, she just can't stomach it.
So we have a ticket for this weekend, her blood counts are up and we have prevented infection (the biggest risk) and now we just need to get her stomach settled and start the rebuilding process. We can't give a sigh of relief yet by any means, but we can certainly feel very positive about the progress. It has been long row to hoe, but I expect some blooming soon.
Tuesday, July 8, 2008
Tuesday, July 8 - Nothing Exciting
Chris got the "day off" today from the trip to the hospital. As they saw some progress with the blood counts yesterday, I guess they wanted her to stay home and use the day to focus on getting some rest, getting a little exercise, and trying to get the nausea under control. I would say we were two out of three in meeting these objectives. Chris had some rest, with sleeping in and a number of naps. She went down to the courtyard and walked twice for about 15 minutes each time, getting a little sun and fresh air. She has to wear a hat (avoiding a sunburned scalp) and her surgical mask, so she really doesn't enjoy it, but knows she needs to push herself. Unfortunately, as if on schedule, she got sick again tonight. This has probably happened now every day for over two weeks in some form or another. Nobody should have to go through this like she is, but she remains stoic. To be honest, for the first time, I hear some anger in her voice. She doesn't let herself slip often, but I know this is really getting to her. She will fight through this emotional trough, but it actually takes energy to get yourself back up mentally, and she really doesn't have much energy. So tonight she went to bed early, just to get the day over with sooner I believe. But even after a tough day, she always says: "I know tomorrow will be a better day". So overall she remains positive, as she knows how important that is to beating this, but she clearly is getting some small dents in her armour.
One thing I have been trying to get smarter on is how the drug trials work. We were offered the opportunity to participate in a drug trial at the very start of her treatment, and we did some research and contacted some other experts (thanks Ron) and we decided against it. In retrospect, we think it was the right decision. But drug trials and the pharmaceutical industry are very interesting to learn about. Of course pharmaceutical firms are "for profit" entities, and they are vilified in the press all the time, but in the end, they do develop amazing cures. I honestly believe we take for granted the drugs that have saved lives across the world (think of small pox vaccines, hepatitis, influenza shots we all take in the fall) and some organization had to invest significant dollars to develop this drug, confirmed by a trial, produced with high standards, and distributed. So I will avoid politics here (again), but I wanted to use this off topic diatribe to simply point out a very interesting site online that lists all clinical trials for all kinds of diseases.
This is sponsored by the National Institute of Health:
http://clinicaltrials.gov/ct2/home
It shows all clinical trials going on worldwide that the NIH is tracking, and I believe it is a great example of a valuable government service (words I very rarely use together). You can search on almost any disease, e.g, amyloidosis, heartburn, bladder cancer (B, our turn to pray for you now), and even the heartbreak of psoriasis. If you are aware of a loved one who suffers from a disease, and are interested in learning about all clinical trials (closed, active or proposed), and their status, this actually is a very powerful site. I can assure you I know every single trial around primary amyloidosis, who is sponsoring them, etc.
OK, again, sorry for my meandering muses.
Chris and I are anxious for a very successful day tomorrow. I am counting on good blood counts, a rock solid stomach, and her smiles that let me know everything is all right. Nothing makes my day more than seeing her smile. Tomorrow I know I will see many of them.
One thing I have been trying to get smarter on is how the drug trials work. We were offered the opportunity to participate in a drug trial at the very start of her treatment, and we did some research and contacted some other experts (thanks Ron) and we decided against it. In retrospect, we think it was the right decision. But drug trials and the pharmaceutical industry are very interesting to learn about. Of course pharmaceutical firms are "for profit" entities, and they are vilified in the press all the time, but in the end, they do develop amazing cures. I honestly believe we take for granted the drugs that have saved lives across the world (think of small pox vaccines, hepatitis, influenza shots we all take in the fall) and some organization had to invest significant dollars to develop this drug, confirmed by a trial, produced with high standards, and distributed. So I will avoid politics here (again), but I wanted to use this off topic diatribe to simply point out a very interesting site online that lists all clinical trials for all kinds of diseases.
This is sponsored by the National Institute of Health:
http://clinicaltrials.gov/ct2/home
It shows all clinical trials going on worldwide that the NIH is tracking, and I believe it is a great example of a valuable government service (words I very rarely use together). You can search on almost any disease, e.g, amyloidosis, heartburn, bladder cancer (B, our turn to pray for you now), and even the heartbreak of psoriasis. If you are aware of a loved one who suffers from a disease, and are interested in learning about all clinical trials (closed, active or proposed), and their status, this actually is a very powerful site. I can assure you I know every single trial around primary amyloidosis, who is sponsoring them, etc.
OK, again, sorry for my meandering muses.
Chris and I are anxious for a very successful day tomorrow. I am counting on good blood counts, a rock solid stomach, and her smiles that let me know everything is all right. Nothing makes my day more than seeing her smile. Tomorrow I know I will see many of them.
Monday, July 7, 2008
Monday, July 7 - the saga continues
рвота, κάνετε εμετό, vómito, Erbrechen,呕吐 This is Russian, Greek, Spanish, German, and Chinese for the english word vomit. I am tired of writing that word, I am sure readers are tired of seeing it, and most importantly Chris is tired of doing it. It just never ends. Last night after I posted the blog update and again this afternoon after getting back from the hospital she vómitoed again. She continues to lose weight and is now down to 105 lbs. Just 2 months ago she was 121. We spent a great deal of time talking to the medical team about this today. Of course we could not find a common denominator as to a cause (remember this is an art, not a science), but they have been very focused on it as they are truly concerned (although they explained that this kind of occurrence happens occasionally). Everyone has a different reaction to the toxicity of the chemo. Some people have kidney and liver issues, some have skin lesions or bone pain, and some have Gastro-Intestinal problems. So, the new protocol (medical speak for "course of action") is to add another anti-nausea medicine, increase some existing dosages, and change the diet a bit. Just listening to the team propose various options and debate pros and cons is a bit scary, but this is where the faith in their expertise comes in. I question everything, ask a litany of questions, read all about the prescriptions they are giving her, and challenge the team often. I do feel they they have come to respect my involvement as well as my perspective. Slowly I am earning my way into the decision making process, but never will I pretend I know more than I do (as is often the case at work my colleagues would tell you).
So we now have a new set of drugs and pills which we will try. The purpose of the new pill is to move things into her digestive system quicker and thus get it out of her stomach before she loses it. They have a pill for everything, we just don't seem to have the right ones yet.
I met with a family today where their relative has been in the ICU for 4 days now, with very serious issues. I keep hearing these horrific stories and I think how lucky we are that we are not in that bad of shape. Chris also spoke to her friend Jen today (the one who the original article about amyloidosis was written about) who recently went through her second treatment. She has a fantastic attitude, has a ton of energy, and serves as an inspiration to Chris. So Chris sees the bad side of this and thinks how lucky she is, then she sees the good side and knows there is light at the end of the tunnel.
The doctors said there were three things Chris needed before she could get the green light home:
1) stop the nausea 2) get the platelets over 100, and get the edema under control. They do not want to pull the chest catheter until both the nausea and the edema are balanced, as they use this catheter for directly giving her the medicine. This way she can't Erbrechen (see the first line) it.
Her CBC numbers today were:
Measurement / Chris / Normal Range / Result
WBC (white) /3.0/ 4.0 - 11.0 / LOW
RBC (red) / 3.1/ 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 9.8 / 12 - 16 / LOW
Platelet / 67.0 / 150 - 400 / LOW
Chris and I asked them what they would guess the next 10 days might look like. They believe that they will solve the рвота by Wednesday (optimists maybe?), pull the catheter by Friday, watch her over the weekend, and let her go home the middle of next week. So in the worst case, we are here until Wednesday of next week.
The one issue that is starting to come up nightly is the recurring nightmares. Mine, not Chris'.
I keep having these dreams that these two guys names Chandler and Joey are my roommates and we live across the hall from these women who, well never mind. Just suffice it to say that season 10 cannot come quick enough. I am so close to κάνετε εμετό every time I watch it.
Chris continues to really appreciate all the support, prayers, love, and positive vibes being sent her way. She knows that an incredible number of people are thinking of her every single day and she knows that you are all praying for her. You have no idea how much it means to her that people from around the world are pulling for her. I think of it as a 24 hour vigil of hope for her successful recovery.
Thanks to all!!
p.s. apologies for those who don't have international language support enabled on their PC's. I have no idea what will show up when you read this on your PC.
So we now have a new set of drugs and pills which we will try. The purpose of the new pill is to move things into her digestive system quicker and thus get it out of her stomach before she loses it. They have a pill for everything, we just don't seem to have the right ones yet.
I met with a family today where their relative has been in the ICU for 4 days now, with very serious issues. I keep hearing these horrific stories and I think how lucky we are that we are not in that bad of shape. Chris also spoke to her friend Jen today (the one who the original article about amyloidosis was written about) who recently went through her second treatment. She has a fantastic attitude, has a ton of energy, and serves as an inspiration to Chris. So Chris sees the bad side of this and thinks how lucky she is, then she sees the good side and knows there is light at the end of the tunnel.
The doctors said there were three things Chris needed before she could get the green light home:
1) stop the nausea 2) get the platelets over 100, and get the edema under control. They do not want to pull the chest catheter until both the nausea and the edema are balanced, as they use this catheter for directly giving her the medicine. This way she can't Erbrechen (see the first line) it.
Her CBC numbers today were:
Measurement / Chris / Normal Range / Result
WBC (white) /3.0/ 4.0 - 11.0 / LOW
RBC (red) / 3.1/ 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 9.8 / 12 - 16 / LOW
Platelet / 67.0 / 150 - 400 / LOW
Chris and I asked them what they would guess the next 10 days might look like. They believe that they will solve the рвота by Wednesday (optimists maybe?), pull the catheter by Friday, watch her over the weekend, and let her go home the middle of next week. So in the worst case, we are here until Wednesday of next week.
The one issue that is starting to come up nightly is the recurring nightmares. Mine, not Chris'.
I keep having these dreams that these two guys names Chandler and Joey are my roommates and we live across the hall from these women who, well never mind. Just suffice it to say that season 10 cannot come quick enough. I am so close to κάνετε εμετό every time I watch it.
Chris continues to really appreciate all the support, prayers, love, and positive vibes being sent her way. She knows that an incredible number of people are thinking of her every single day and she knows that you are all praying for her. You have no idea how much it means to her that people from around the world are pulling for her. I think of it as a 24 hour vigil of hope for her successful recovery.
Thanks to all!!
p.s. apologies for those who don't have international language support enabled on their PC's. I have no idea what will show up when you read this on your PC.
Sunday, July 6, 2008
Sunday, July 6
Today continued the slow weekend approach with Chris sleeping in, watching some TV (yes, you guessed it) and taking some naps. Unfortunately she still has nausea and vomiting and it is really becoming a concern. In the middle of the night last night, and again this evening, she vomited. This will be the primary discussion tomorrow as we are both very frustrated that we cannot figure this out. She had a good breakfast today, but a small lunch and no dinner as she had not appetite and was fearful of getting sick. She can only eat extremely small portions and if I serve anything bigger than bite-size she can;t even look at it. Obviously this is not a good situation, so thus our focus tomorrow with the medical team.
The hospital did call and state that we did not need to come in today for tests. The white blood cells were good and the platelets "not bad". They may give her more platelets tomorrow. Getting the platelets up is key as only when she is producing enough platelets through her bone marrow will they remove the catheter from her chest. These two tubes have been hanging out of her for over a month now, so you can imagine Chris is getting pretty tired of them.
Chris' sister came in tonight with Abby and Stephen. I took the kids out for dinner (a real meal for me) and Debbie did some yoga with Chris. Overall, Chris has lost so much weight and has so little exercise that even yoga is tough, but she knows how important it is. The Doctor told us last week that Chris will feel very weak for a few months and that she will need to devote herself to getting strong again. This will take 6-12 months. Chris' objective is to be back on the tennis court playing a tough game by April 4th of next year - the date she was first called by her primary doctor.
It was great to see two of the kids for dinner. They all have been very supportive and call frequently for updates and to talk to Chris. I know all five of us cannot wait to get back together again. Being away from the kids has been very tough and we miss them greatly. Hopefully we will be out of here in the next 7-10 days and things will get a little more normal. Chris will need to take it very slow for a good month or so, but I know how tough she has been and I know she will dedicate herself to her recovery. But, I realize I am getting ahead of myself. First thing is to get this nausea stopped.
So overall a restful weekend for Chris, but one that has been frustrating as we try to understand why her body is still suffering from the chemo so badly. Hopefully we will get some answers tomorrow.
The hospital did call and state that we did not need to come in today for tests. The white blood cells were good and the platelets "not bad". They may give her more platelets tomorrow. Getting the platelets up is key as only when she is producing enough platelets through her bone marrow will they remove the catheter from her chest. These two tubes have been hanging out of her for over a month now, so you can imagine Chris is getting pretty tired of them.
Chris' sister came in tonight with Abby and Stephen. I took the kids out for dinner (a real meal for me) and Debbie did some yoga with Chris. Overall, Chris has lost so much weight and has so little exercise that even yoga is tough, but she knows how important it is. The Doctor told us last week that Chris will feel very weak for a few months and that she will need to devote herself to getting strong again. This will take 6-12 months. Chris' objective is to be back on the tennis court playing a tough game by April 4th of next year - the date she was first called by her primary doctor.
It was great to see two of the kids for dinner. They all have been very supportive and call frequently for updates and to talk to Chris. I know all five of us cannot wait to get back together again. Being away from the kids has been very tough and we miss them greatly. Hopefully we will be out of here in the next 7-10 days and things will get a little more normal. Chris will need to take it very slow for a good month or so, but I know how tough she has been and I know she will dedicate herself to her recovery. But, I realize I am getting ahead of myself. First thing is to get this nausea stopped.
So overall a restful weekend for Chris, but one that has been frustrating as we try to understand why her body is still suffering from the chemo so badly. Hopefully we will get some answers tomorrow.
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