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.

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.

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...

Quick Update - Saturday

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.

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!!!

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!!!

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.

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.

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.

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.

July 5th - Bald is Beautiful

So far so good today, but I seem to post these updates a few minutes too soon. Last night after stating that Chris had a good day and posting the update, Chris ended up vomiting for the next 2 hours. This is the second night in a row that she has gotten so ill prior to bed. We are trying to figure out what may be causing this and really are not sure. It could be a potassium pill she needs to take that she has had trouble with. It might possibly be exhaustion, and just running out of energy. Potentially it is the 10 hours of Friends (now on season 6) that we have been watching (she found out it is was unplugged). Or it could be my cooking. But whatever it is, it is frustrating as it seems to only happen very late at night.

We went to the hospital today and had the normal battery of tests, but did not get the results right away. She does continue to have some serious swelling in her legs, and that needs to get resolved.

Chris has now hit the bowling ball stage. There is just about no hair left, and my technique of using the lint brush has been a stroke of genius. I am sure I could patent this idea. She has been a real trooper about this, and she makes light of it a bit. Yet my jokes have not been well received and I will avoid putting them here as to avoid later repercussions later.

Last night we watched the Boston fireworks off the reflection of the building we can see near us. A little strange, but we were able to hear them very well. Chris was unfortunately vomiting at the same time, so I am now sure this will be one of those July 4'ths we will not forget.

We will not see the Doctor until Monday (although we will see nurses at the hospital for the tests tomorrow). The late night vomiting and the edema are still a concern, as this is now Day 15 and the normal last day of the bell curve of side effects. She has been sleeping relatively well, but she lacks any energy during the day (not totally unexpected). We did connect with another family who's wife/mother has been in the hospital for a week and had to be taken from her apartment to the hospital via ambulance. She is extremely weak and is generally not doing well with the toxicity of the chemo. When we compare Chris to her, Chris is doing well.

Chris remains incredibly positive. We have mentally prepared ourselves for being home in 10 days. After the hospital visit today, Chris was up to driving a bit around Boston. Of course we know Boston very well, but it was good to get her away from the normal route and routine. We agreed to come back in for dinner often in the future when she is up to it. We have not been able to go anywhere since we moved here, so all we can do is make plans to come back when she is at full health and really enjoy the city.

Tomorrow will be a third day of rest. That will be very important for her. Hopefully I can give her a good meal and she can keep it down.

Thanks again for all the prayers and support. It continues to be the most important element of her success.

Friday, July 4th - A Very Slow Day

Without question, this was the slowest, easiest day of the last 30. Chris slept in until about 9:00 AM, had a good breakfast, and read the paper. No rush to the hospital, no need to get dressed, no pressure to move at all. As such, it was a very relaxing day for both of us. Chris never left the apartment, she simply read, watched TV, and napped. I had to get some new prescriptions so at least I got to walk around Boston a little bit today.

As we did not go to the hospital, we have no idea about blood counts, but we will be back there tomorrow (Saturday) morning. Chris had a little nausea at various times, but no vomiting. I would say that the timing of this holiday could not have been better. We both needed a break. The tough part is that we were away from the family, with one in Maine, one in New Hampshire, and one in Vermont. We also are just 3 blocks from the Boston Esplanade where the Boston Pops put on their annual show and some of the best fireworks in the US are displayed tonight. Unfortunately, we are facing the other side of the city. So close yet so far. Even though we are on the 21st floor, we will not be able to enjoy it other than on TV.

Hopefully Chris will have a good day tomorrow. She still is eating very little, but if we can get the nausea under control, her appetite may increase. Day 14 has been a good one.

Thursday, July 3 - A RollerCoaster Day

The Up's and Down's are frustrating as we continue to move forward. Chris had a roller coaster of a day today. She had a good appetite this morning and ate a good breakfast. Then while brushing her teeth she got lightheaded and actually fell in the bathroom. She fell against the shower curtain and into the bathtub. That was very scary and she doesn't remember how it happened, other than that she thought it was all in slow motion. All I heard was a scream and a crash, and I ran to find her almost passed out. As she has a low level of platelets, her skin bruises very easily and her back looks like it was beaten up. We were lucky, but from now on she has me as a personal escort when she is standing at the sink in the bathroom.



At the hospital today they did the normal lab work with these results:

Measurement / Chris / Normal Range / Result
WBC (white) /3.0/ 4.0 - 11.0 / LOW
RBC (red) / 2.9 / 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 9.5 / 12 - 16 / LOW
Platelet / 67.0 / 150 - 400 / LOW

The white blood cells went from 1.7 to 3.0 and are recovering nicely. The hemoglobin went from 14 to 67, but two bags were added yesterday (Wednesday) so it is not known if the bone marrow is producing any or not. Yet, this is alot better than 14.

So the medical team was pleased with the blood counts. However, Chris has an unusual increase in edema (swelling) in her abdomen and ankles. Nobody was sure what is causing this, but they treat it with a diuretic (Lasik) which seems to work. Overall the numbers looked good enough that they gave us Friday (July 4th) off. No visit to the hospital at all, but back on both Saturday and Sunday. This was great to hear and everyone felt good about the progress. Chris ate a good lunch and we left at about 3;00 for the day, knowing we were heading for a long and very slow weekend. It had been a hell of a week with 4 nights in the hospital and we were glad to finally get a break. Unfortunately our confidence was fleeting. Within an hour of being back at the apartment, Chris started vomiting. Unfortunately these were not small little nausea episodes but some very bad vomiting, where I know she lost both of her previous meals. I felt so bad for Chris as she really had a good appetite, the doctors gave her a thumbs up heading into the weekend, and bang, a very tough night. She has been vomiting all night and is just falling asleep at midnight tonight. Thus a real roller coaster of a day, and very frustrating. But as always, she did not complain once, she just lets it happen and moves on.

Last night I cut her hair as close to her scalp as I could without nicking her skin. Good thing, as what was left has been flying all over the place today. Think of a pillow fight where the pillows break open, and you can imagine what is flying around the apartment. I bought one of those sticky lint rollers, and one or two passes requires a change in the sheet. She is wearing a hat or a scarf, but I keep telling her to go au naturale and let people think she is trying to make some kind of a fashion statement. I never thought my wife would allow me to play "barber" on her head, but it looked pretty good considering I had no idea what I was doing.

This will be a long weekend for Chris if we don't get the vomiting resolved. We are going to lay very low, catch up on some sleep, and try to eat some good meals. It will be a very strange July 4th, no parades and no fireworks, just a day devoted to getting Chris' body back in balance. It will be a July 4th that we will always remember and will reflect back on many years from now.

Our best wishes for a great July 4th to our US friends, and to all our friends around the world, thanks for checking in on Chris. She knows how many people are rooting for her.

It's a Marathon, not a Sprint

Today was more forward progress, but Chris' blood counts are taking their sweet time in getting started. The stem cells that have been finding their way to her bone marrow need to kick in and start producing the white blood cells, the red blood cells, hemoglobin, and platelettes. Here is how she compares to that range as of today:

Measurement / Chris / Normal Range / Result

WBC (white) /1.7 / 4.0 - 11.0 / LOW
RBC (red) / 3.2 / 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 10.4 / 12 - 16 / LOW
Platelet / 14.0 / 150 - 400 / VERY LOW

This was "day 12" as they refer to it (12 days after replant) and most counts get back to normal between 9 and 14 days. So it seems like Chris is running behind but in reality she is still within the normal timeframe. We just want to sprint to the finish (get to normal) when in the long run, one or two days won't matter. In the scope of many years, whether her counts get up today, tomorrow, or Friday will not really matter. Of course the first question I asked was "is it possible that the stem cells don't get to the bone marrow and start producing as they are supposed to?" The answer is no, just be patient, they will come.

Chris had no breakfast today at all, but she had a fair lunch and a good dinner. For the first time in weeks I actually felt that she ate a decent meal.

It is interesting to see the shifting attitude today in the center. You can kind of tell that they are preparing for the long weekend and are trying to position themselves to ensure the patients are fully prepared. Chris did get two bags of platelets via an IV today, and they may very well add more tomorrow, along with some red blood cells. They are effectively stocking the pantry, with the hope that nobody has to run to the store over the three day holiday. This is true of both the medical team and the patients. Certainly the doctors deserve a long weekend and it would be nice for Chris to not have to go to the hospital for at leat one day. She and I have been there every single day since June 4th in one capacity or another. She could really use a day where she sleeps in, lays around the apartment, takes naps on her schedule, reads the many books she has been trying to read, etc. It's too bad the DVD isn't working (oops).

I did have a discussion today with the team on the rationale as to the stem cell transplant as an out-patient vs in-patient. They were very blunt, stating "our mortality rate with our out-patients is significantly better than others doing inpatient". It made we wonder about the focus on the "mortality statistic" in the medical field. In theory, a hospital could ensure it has a great mortality rate (i.e. low) by only accepting extraordinarily low risk patients. Yet this would obviously cause a bias against medium risk patients who could very well benefit, albeit with the higher risk. It must be a very difficult decision sometimes whether to accept a candidate for the risky stem cell transplant/high-dose chemo program if the candidate has a higher than average risk level. These doctors have an incredibly difficult decision to make that I did not fully appreciate. Do they accept a higher risk patient into a high risk program that has a greater success rate (high dose vs oral) along with a higher morbidity rate, or do they do the low risk, lesser success rate route. Not sure that all made sense but the point is these doctors make decisions everyday that we (or at least I) do not appreciate the magnitude. One could almost say that they have to play God everyday. This reinforces my belief that medicine is an art, not a science. There is no script to follow when it comes to final decision making like this.

Again, I meander off the true subject here - Chris. My wanderings are sometimes theraputic, as they help me appreciate the enormity of this. Most important, Chris is taking small steps forward. Tonight I will give her a back massage as a way to coax those shy stem cells to get to work. Enough vacationing, we need to step it up. But again, in the long run this is not a sprint, but a journey to long and healthy life.

Progress!!

Quick update. Chris got the go ahead to come back to the apartment and we made it back around 8 pm tonight. She still had a rough day with some nausea and no appetite at all. She tried to eat a dinner they served late this afternoon and she ate about half of it only to lose it 30 minutes later. Luckily this was after the discharge instructions had been given and we got out of there as quickly as possible before they knew what happened. The head of the medical team met with us today (as she does daily) but this morning she had 6 medical students in tow. As this is a teaching hospital, you see a slew of medical students all over the place. It actually is exciting as there is a ton of energy. These medical students just listen and learn from the experienced medical team and you can see that they are soaking it all up. That said, it must have been a bit disconcerting to Chris to have seven people examine her. I do not exaggerate when I see she had 4 stethoscopes on her back at the same time. It is very important that as many medical students as possible are exposed to this disease. It is so badly diagnosed with so many doctors missing it that we want as many medical students as possible to learn the symptoms.

I also met with the head of the nursing department today. As Chris has now spent a total of 10 nights in the hospital over the last 2 weeks, it was important to me that I tell the department head what I thought of the care. Within our family (and I hate to admit this), we have had 6 significant surgeries in the last 2 years. In all of those, I have never seen a nursing staff as good as this one. These people were so passionate about their patients, they had so much empathy for the misery Chris was going through, and they were very very patient with me (that alone is worth acknowledging). We had three nurses over the various shifts (they work 12 hours shifts over a 3 or 4 day period) and they are all good friends. They would call each other when they were home to ask their colleagues how Chris was doing. I wish everyone could experience the care these nurses provided -just incredible.
Of course I also took the opportunity to propose new processes that I thought could be reengineered within the hospital, but I'll leave that to another day.

Chris is very happy to be back in the apartment. I can't describe how strong she has been. Imagine days and days of nausea, vomiting, diarrhea, complete exhaustion, and not being home. Most of us would complain at some point, but Chris is so internally committed to beat this thing that she refuses to let it get her down. She is my hero.

So tonight we have no bells and buzzers, no vital signs every 4 hours, and no injections. Of course we are back there early tomorrow morning. But that is fine as she is making progress.

By the way, the haircut she got two weeks ago was not short enough. Hair is flying everywhere, so tomorrow she gets the buzz cut (another new talent I will learn).

Monday - Another tough day

Unfortunately Chris had a tough day today and did not see the progress we had been hoping for. As such, they are going to keep her in the hospital yet another night tonight -Monday. She remains extremely tired and has some occasional nausea and still some digestive problems. Additionally, she has eaten very little today. So to call it what it is, it was not a good day. Her red blood count looks good and her platelets are good, but her white blood cells (WBC) are not back to an acceptable level. A normal count for WBC is between 4.0 and 11.00 K/UL. Today she was at .7 and thus she still has a long way to go. Night #4 is not what we expected, and while Chris is keeping up a good front, it is frustrating to us.
We have been told over and over again that the hospital is the worse place to be, yet here we are for another night. I questioned the doctor about the rationale for keeping her, and the answer was that this way they can monitor her more closely and avoid us from having to bring her back to the emergency room in the middle of the night. I am starting to believe that there is a lack of trust by the medical team in the emergency room and that by keeping her here, the Amyloid team maintains the decision making control of the patient vs entrusting it to the triage team in the emergency room. To me it looks like departmental politics vs patient prioritization.
Yet, that said, I have to contain my skepticism. Despite my natural inclination to suspect politics, I realize that in fact, this medical team knows more about this than anyone in the world. I am very comfortable asking questions and challenging, but in the end I realize that they know more than I do. (Those who know me well realize that is a very difficult admission for me to make).

So this has been a tough day for Chris. Again, not a single complaint and just an amazing patience for the rebound to happen.

I know we all hope for a much better day tomorrow and authorization to get home. She continues with her amazing internal strength.

Sunday Evening - Late

This is night three in the hospital for Chris. They decided this afternoon to keep her as a precaution as both her white blood cells and her red blood cells were low. She has been very tired and is moving very slowly today, and dozing a fair amount. This afternoon they did a blood transfusion as a way to improve her hemoglobin (carrying her oxygen). Tonight, just before bed, she actually looked relatively good. She sat in the chair (my bed) for awhile and has been doing some of her yoga moves to stay flexible.



She doesn't know it yet, but she is losing her hair quickly. I am pretty sure it will be a mess tomorrow, so she may just decide to take it all off. I think it would be a great deal easier on her to not have to worry about the inevitable.



Chris' sister came in today and relieved me for a few hours. I actually re-entered the real world for about 3 hours. It was strange that people were not wearing lab coats, blue scrubs, and no stethoscope around their necks. People were dressed very strangely, with shorts, sandals, printed shirts and baseball hats. I had no idea that there is an entire world beyond the Boston Medical Center.



Hopefully we will get an early start on the blood tests tomorrow and will get our release from here. To be honest, today's No Go was very frustrating for both Chris and I, but we know in the end it is the right thing - better safe than sorry. Chris continues to be a rock, I am amazed that she can find so much strength.

Sunday Morning - Early

Chris is resting comfortably after sleeping well through the night (she still is as of 7:30 am). She has been knocked out through a variety of drugs but I am glad she was able to sleep without much interruption. It appears that all systems are stable and I am hoping we are a GO for launch back to the apartment some time today (can you tell I watched a 2 hour documentary on NASA from 1-3 this morning ?).
Her blood pressure is now a bit low and again she has not eaten very much at all for the last two days, but if we have stopped the nausea she may start getting hungry. She has told me that everything tastes bad, or at least different, with a metallic flavor in most things. This is a frequent side effect of the chemo I understand. I would like her to get up out of bed this morning and walk around, as she has not been anywhere but her bed and the bathroom since Friday afternoon. It is very important that she stay limber and not get "deconditioned", where the heart and lungs start losing some of their strength due to lack of need.

Abby goes off to her college orientation today and Chris and I are both very disappointed that we can't join her. But she understands completely of course. One of my sisters will take her and they will spend the night tonight in NY. She took Melissa to Burlington as well earlier and has been a great help in offloading duties, along with Chris' sisters. Neither of us have been home for 2 weeks and it seems like an eternity. In the best case we'll be another 3 weeks as Chris rebuilds her hematological system.

I may quit this chair sleeping adventure I am on. I have learned that there are 72 ceiling tiles in this room, there are at least 11 different beeps, bells, or buzzers that seem to go off on average about every 4 minutes, and I can state unequivocally that the old woman in the room next to Chris knows more swear words than all of us combined. One of thr most incredible and long lasting tirades I have ever heard. Fortuntaly the Discovery Channel has great programming all night.

So bottom line, Chris appears to be doing better, but we'll know more when she wakes up. I really want her to be able to get back to the apartment where she is much more comfortable.
Thanks to all for keeping your fingers crossed and your hands clasped.

Saturday Afternoon

I think Chris has summarized the day so far pretty well. To quote her directly, "this has been the suckiest day of my life". I think that just about nails it. I am not sure "suckiest" is much of a medical term, but it sure describes things clearly.

Chris has had things leaving violently from all ends of her body (again, my apologies for my lack of better elucidation). They have spent much of the day trying to balance nausea, diarrhea, blood pressure, potassium, fatigue, and anxiety. She did relatively well last night with only occasional bouts, but today has been rough on her. Hopefully the platelet's and some red blood cell increase will help her tonight.

She has been amazing through this. The Doctors all said this was coming, so she was mentally prepared for it, but I know she just wants to scream out "Enough already, no more pills, no more IV's, no more anything"!!! but she has an internal strength that is amazing. She knows this is the price to pay for her beating this and her fortitude is beyond what even I though she had.

The notes and prayers and positive thoughts from all of you have given her this strength. As one of her best friends said today in a note; Every second of every day God is hearing your name from people who love you. So listen while you're meditating...you'll hear millions of prayers, thoughts and wishes filled with love. What a fantastic thought.

More tonight or tomorrow morning.

Friday - a very tough day

Well, the nice ride through the country side has turned into a dirt road in the thick woods with many potholes. We were warned it was coming and sure enough - WHACK!! Chris is back in the hospital as of Friday evening. She has had very serious digestive issues (ok, I'll call it what it is -diarrhea) with significant blood loss in the stool (sorry, I don't know how to say it nicer). As we understand it, this is an occasional side effect due to the toxicity of the chemo in the GI tract. She did great Thursday night and this morning, was eating well, was able to walk around the apartment, had no cough or swelling, but then as she started her tests this morning, things went down hill fast. She has been hooked up to IV's most of the day, and they added two bags of platelet's (which is what causes blood to clot). You can imagine that the combination of chemo impacting the GI tract, with no immunity system, and no ability to clot is a difficult combination to control. As such we are now going to spend the weekend in the hospital for monitoring. This is the third time Chris will be admitted in the last 3 weeks and she is getting very frustrated and a little depressed. Things were going relatively well all week, and they warned us a tough road was coming, and sure enough here we are.

Chris' white blood cells were still down to nothing, but hopefully they will start reappearing by Sunday or Monday. Today was "day 7" as they keep referring to it around here - seven days since her stem cell replant. Days 5-9 are the tough ones. The risk of infection is the biggest concern and can be a very serious issue if it occurs. We have heard stories about people spending 8 weeks in the hospital due to infections - so that is concern #1.

I'll sleep in a chair again (the back is a goner) as Chris likes someone here to make sure they clean and use the cather correctly. Because it is an unusual catheter that goes into the heart, many of the nurses are not familair with it and if not done properly it can cause a big problem. I am hoping I can get a hall pass for Sunday afternoon and grab a quick sandwich with a friend who will be in town.

So some big bumps in the road, but Chris is ok with the increased monitoring, and the staff here is the best. Hopefully tonight they can get the right balance of fluids in her body. And, for now she still has the full head of hair.

Overall she is hanging very tough, but this has been a miserable day to be honest. I'm sure tomorrow will be much better.