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.

Still at Rock Bottom

Another "unremarkable" day today. All three blood count levels are at or close to rock bottom as expected, and Chris is in the middle of one her highest risk periods right now. Just as yesterday, she has no immunity system at all and as such, we are being very careful. For about a week now, Chris has been in one of three places: the hospital, the apartment, or my car. She is unfortunately getting to "dislike" this routine (I am sure more explicit words will be used soon) as she is ready to go home. However, that is not going to happen.

the side effects remain surprisingly non-existent. Even the Doctors are surprised and keep warning us that they are coming. I had to ask today - "Did she really get the Chemo?". I was assured that they gave it to her, the high dose in fact. So we still wait. In the meantime she still has a full head of hair!

Over the last few days, I have come to two conclusions about the Medical world:
1) medicine is an art, not a science. Of course there is chemistry, biology, anatomy, etc. but I am struck by the amount of difference in opinion on courses of action, medications, and dosages from doctors in the same practice. There is an amazing amount of opinion, gut feeling, and unique perspectives. I have seen one doctor give a prescription and instructions on frequency only to see another doctor on the same medical team shake their head and say "no, don't do that, do this". That kind of shakes ones confidence that their is a single right answer that gets to the end objective. When two colleagues say two different, contradictory things, that is pretty scary.
2) the other observation I have had is that like any community, there is an amazing amount of politics. In my never ending research about this disease, I have found papers from researchers all over the world. I have seen lectures on the internet from researchers in the UK who claim that they "have the single best center for this in the world". They also have the best diagnosis capability, the lowest morbidity rates, etc. They explain in their lectures their findings and approaches. Yet when I bring these topics up to other doctors or ask questions about theses approaches, I see posturing, competitiveness, and even dismissal. So what is the point I am trying to make here: very simple - question everything you are told (why, how, who, etc), find out as much as you can about an illness , and for anything serious , always get a second of third opinion. Medicine to me as an art not a science.

OK, sorry for the off topic rambling, I just needed to vent. Most important is that Chris is in fact getting what I believe is the best possible treatment in the entire world for this disease, she is doing very well considering the incredible stress her body is undergoing, and the single thing we are most grateful for is the love being sent from family and friends. Tomorrow will be a critical day as we hope to avoid any infections with no immune system. That is the single biggest risk she faces.

Hit Bottom - as expected

This medical team knows what they are doing. They told us that Chris would have no white blood cells today and sure enough, she has none. Her red blood cells and her platelet's are also down significantly but they have not needed to give her any as of yet. So right now, the replanted stem cells are quickly finding their way to the bone marrow (primarily in the pelvis and the "long bones") and will kick into gear this weekend. This is why they called last Friday her new birthday. She will have an entirely new system sometime next week. Of course without any immunity system at all right now, she is highly susceptible to infection. She is wearing a mask everywhere and touching nothing. On the way to the hospital, she keeps her hands in her pockets, and I open all doors for her (which I have been doing for years by the way). I have been wiping every surface with a disinfectant and I swear you could perform open heart surgery in this apartment it is so clean.



Chris has had none of the possible side effects. She is sleeping about 20 hours a day, but that is to be expected. It gives me more time to cook, clean, do laundry, pay the bills, etc. More importantly, she is too tired to watch Friends, so we are stuck on Season 4 (hooray)!!

We have received well wishes from around the world and it is greatly appreciated. Friends in France, Australia, Singapore, and even NY have sent their encouragement. Chris feels the love from everyone, and it has been a huge help when she is down.

One question I asked today was: When will we know if all of this had any impact? In other words, when will we know that the new plasma cells, created by the stem cells are not building these amyloid proteins? The answer I was given was 6-9 months. Only then will we know the three possible outcomes: complete response, partial response, or no response. The second question I have asked is: Will the body try to rid itself of the amyloid proteins deposited in the organs? the answer here is that it is possible, as long as there is not too much damage already. So yes, there can be an improvement and the organs can slowly repair themselves. This may take years, but we'll take that.

So, Chris has hit the ground floor, she is at great risk of infection, and we are being very careful. Thanks to all for the ongoing support and prayers.

No News is Good News

As they say in the medical world, today was an "unremarkable day". That always seems like a very strange comment when it is said. To them, unremarkable means that everything is going as planned and there were no major incidents. To me, the entire process is incredibly remarkable, in fact it is completely amazing. So Chris' "unremarkable" day consisted of her daily trip to the hospital and her evaluation and blood work. The real indicator of activity is her white blood cell (WBC) count. The normal range for all of us is 4,000 - 11,000 WBC/Milliliter. Yesterday, her count was 9,000 (this was 6 days after the chemo). Today it was 1,200. They predict that tomorrow (Wednesday) it will be down to zero. She will then see the start of the new white blood cells (generated by the replanted stem cells) start to be produced by Sunday. Within two days, she will be back to an acceptable level (much quicker than I had understood).
She is extremely tired, sleeping often from exhaustion, but she is doing great. They ask her a laundry list of questions every day (does she have heartburn, dizziness, nausea, mouth sores, etc.) and she really has not had any in the last 2 days. Very unremarkable!!!

One thing I did today was to sit in the "Amyloid Support Group" that is held weekly at the Amyloid Center. This is really a one hour sharing session with anyone who is there as a patient or a caregiver. Chris and I sat in on this the first week of May when we were there for the initial evaluation. Back then, just about a month after we had heard of Amyloidosis for the first time, we were in a state of complete shock. We sat in this support group like "deer in the headlights", completely dazed at what was happening. There were four patients today who were being diagnosed with their three days of tests, and I knew exactly what they were feeling like. They have a blank stare, they have lost all color, and the are on the verge of a complete breakdown. Chris and I know this feeling painfully well. However, as I listened to these stories today, I was amazed to here the similarities. One woman said " I kept telling my Doctor I just did not feel right" as she was losing weight and energy. Another man said that he had been diagnosed with four different diseases, none of which were Amyloidosis and none that had any treatment. Yet, he got to Boston after doing his own research, they did the one required biopsy, and it was confirmed he has Amyloidosis. Finally a woman told her story, that she had felt bad for about 2 years and kept losing weight and getting weaker. She told herself that she was getting older and this was normal, but she had lost over 40 pounds. Her delay has caused her to get so ill that they cannot treat it with either the stem cell transplant or even oral chemo. Other stories I heard are a testament to how lucky Chris and I are. Many people are using their life savings to go through this. They have a single room in an inexpensive motel where the father( patient), the mother, and there two kids are living for the summer. They take a bus to the center everyday and the kids sit in the lobby all day long. Another man said his son left for Iraq last week for 14 months and he did not even tell him of his disease. The reason I explain these stories is that Chris and I both feel so incredibly blessed. We have gone from symptoms to treatment in about 6 months (others are years and too late), we have the financial resources to make this comfortable for Chris, we are very close to our family and friends, we have the most amazing support network, we have people praying for us daily, and I have enough experience in my job to know how to handle crisis situations. We certainly do not know what the end result of all of this will be, but one thing I am certain: we have everything going for us and we truly know how lucky we are. We know somebody is looking out for us.

Good Day Today - Monday

Overall a great day compared to some others this past week. Chris has held down all three meals (albeit all small) today. Her weight has stabilized, and she generally feels pretty good, although very tired and weak. Very little nausea, no bone pain (which we know is coming) and she slept well. She is getting bored and told me today she is ready to go home, but that is not happening for many weeks even in the best of circumstances. However, two patients that we have gotten to know both went home today (to Ohio and Tennessee) after many months of living away from their families. We have it pretty easy as Chris' sisters have been able to come in and swap laundry, drop off mail, etc. while we have been at the hospital.



The daily routine is a trip to the hospital (about an 8 minute drive) for blood work and lots of tests. If things look good they send us home (apartment) for a fistful of pills that she takes. I am still amazed at how many different drugs she takes on a daily basis. She also has a device to exercise her lungs ans she is very careful about oral hygiene as mouth sores can be a huge problem.



One issue that still exists is the number of seasons of Friends remaining. I had no idea when I agreed to watch these with her that over 25 million episodes had been recorded (I may be off by a million or two but that's all). We are still on season 3 and I am very tempted to accidentally spill something on or in the DVD player.

So overall as of Monday evening, things are generally good. We know the storm is coming mid-week and things will get very tough. She has been a rock in this storm so far.

Sunday Morning

Chris was released from the hospital Saturday evening and we got back to the apartment uneventfully. She did get sick a bit last night and again this morning, but she slept well. Amazing how much better you can sleep without bells and alarms and buzzers going off all night long. We went back to the hospital for her daily checkup and some injections this morning and all went well. However, they did warn her that unless she increased her fluid and food intake she would be "right back in the hospital again". Many of the drugs she is taking are making her very groggy, so she moves slowly and sleeps a great deal. She also has weird cravings and sends me out to the grocery store (basically at the foot of our building) for certain things. Today was Welch's Frozen Fruit Pop's, yesterday was Crytal Light. If I get the wrong brand name, it's back to the store again. She's Madison Avenue's best friend as she will accept only that name.

She has been trying to watch each of the season DVD's of "Friends". We are on season 3, and I think if I watch one more season I will be fighting her for the nausea medicine.

There has been no major hair loss yet, but we know it's coming this week. She has bought some nice scarves, so she is ready. I keep suggesting a Harley-Davidson scarf or a Confederate Flag - something that gives her a whole new persona. Those kinds of suggestions are not going over too well, so I guess I'll stop with those.

We've made friends with other amyloid patients who are at various stages of their own treatment. Some of the stories are very sad. Many of the patients are from around the world and have been away from their families for months. They all "just want to go home", but they know that is not an option. For now, we are doing OK with that. Abby and Chris' Mom and Sister came to visit for about 45 minutes this morning. They need to stay on the other side of the room and Chris wears a mask around, but it is nice to be able to see the family face to face - we are very fortunate that we have that.

So all is going well on this beautiful Sunday in Boston.