Life in Westchester

Sorry i haven't updated recently.  I can't seem to access my blog at Westchester Medical (they have some sort of block on certain sites) and I've been staying overnight at the hospital frequently.

Andrew is on day 4 of chemo now.  He's responding really well to the treatment.  He had some very enlarged nodes around his chest that were making it difficult to breathe, but they are already shrinking and he's breathing easily.  The doctors are very pleased with his progress -- hooray!  He's getting a touch of brain chemo today as a preventive measure -- sounds dreadful, I know, but it's very important to prevent lymphoma from reaching the brain.  He's scheduled for 7 more cycles, 3 weeks apart, and will have to be admitted to the hospital for each cycle for 4-5 days.  This regimen is very intense and completely wipes out his immune system, so they need to monitor him very carefully during each cycle and provide support with blood or platelets if need be.  He's on a special neutropenic diet, which means no raw fruit or veggies, no sushi (poor Andrew), no takeout -- basically nothing that could have any sort of bacteria at all.  It kind of reminds me of the pregnancy diet, except  x100!  He can't even receive flowers or anything that might have any bugs, microbes, etc.  Crazy.  He can eat most anything that's really well-cooked or super pasteurized.  I think during the recovery period between cycles, he's not continuously neutropenic, but I have to check on that.

I just want to say a few words about his team.  It's ironic that we chose to stay in our nearby small hospital and have ended up in a huge medical center.  His case has been so difficult to diagnose, so aggressive, and had so many unexpected challenges (gall bladder infection), that no one could have predicted any of this.  The entire time, Dr. W had been consulting with Dr. Ahmed, the head of Lymphoma at Westchester (where Dr.W did his residency).  During the gall bladder recovery, Andrew took a bit of a bad turn, and Dr. W and Dr. A decided it was urgent that he be transferred to a hospital that could handle his high level of care needs quickly.

When we first arrived, I was a bit nervous. WMC seemed so enormous and impersonal, and we had become used to our nice, small Benedictine.  But I must say, it has been remarkable being here -- Andrew has an entire team now working with him.  They are so amazing, so caring, and they get everything done so quickly!! He was in bad shape when we arrived on Monday night, but by Tuesday afternoon he was already stabilized and in treatment.  We're so grateful to Dr. W for getting him into the right place, and under the guidance of Dr. A.  The two of them are now sharing care, and we feel like we're in really good hands.  Dr. A spoke with us after Andrew started feeling a bit better.  He called himself a bit of a Lymphoma-maniac -- it's his speciality and passion.  He told us that lymphoma has tripled (not doubled, as i read) in the last 30 years, and is indiscriminate -- it effects all races, all ages, all genders equally.  He said when he heard about Andrew's case (young guy, 2 little kids, very aggressive and complicated lymphoma) he said he knew he had to get us here immediately, and get us a cure.  After 10 minutes of talking with Dr. A, both Andrew and I felt really positive for the first time -- that we're really going to make it out of this.

My next concern is dealing with the insurance company.  WMC is recently out of our network, which is a big problem, as this care is going to be very expensive.  The case worker, though, is being very helpful, and thinks we'll get it all sorted out.  Dr. W told her that WMC is the only tertiary care hospital within 60 miles of us (the limit), so we will most likely be able to continue all of our care there.  Hopefully we will have it all sorted out within the week.  I would hate to start all over with a new team.  What a lot of bureaucracy!  But we expected it of course.  ;)

Anyway, onward -- another day closer to being lymphoma-free, and putting this behind us.  Thank you from both of us, and Jack and Ewan for all the wonderful messages, cards, food, and well-wishes.  We are so grateful and amazed by the amount of support and love that we're receiving.  If i haven't personally responded, please know that I'm trying, and am receiving all the messages.  The last several days since Thanksgiving have been absolutely frantic, but things seem like they might settle a bit now (I pray). xoxo

Linda

Lifesaving Bags of Chemo!!