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.