Very Tough Week - Physically and Emotionally

The week before Christmas has been a pretty difficult one for Chris unfortunately. She has had two bumps in the road - yet remains stalwart. Actually to call them bumps in the road minmmizes them - let's call them detours.

Wednesday was my third day down in NY attending some very tough meetings. I had flown down early Monday for 4 days of meetings while Chris and Stephen remained home. All was going very well so Stephen left Wednesday afternoon to go to Maine skiing with friends. At about 10:30 PM while I was dragging myself to bed after a very long day, my phone rang. It was Chris. She was breaking out in hives with rash across her body, her lips swelling, incredible itching, etc. This came on relatively suddenly. She called a friend who had been giving her some shots - the blood thinner coumadin. As a nurse, her friend has been very helpful as Chris hates needles (imagine the hundreds and hundreds of injections she has had this year). Her friend suggested she take some benadryl and call the doctor. Of course we had none in the house ( bad luck on our side ) so a scramble of calls started in the neighborhood and some was found (good luck except for those getting phone calls late at night). Her doctor called her back and said, "get to the ER - STAT". So without hesitation, our great friend Sally said "grab a coat, lets go". No kids were home, I was not home, and here is Chris heading to the ER at 11:00 at night. I won't bore you with the details, but Chris has had a very severe reaction to ==> we have no idea! 3 days letter, she is still breaking out with a very ugly rash across her torso, on her neck, under her arms. Big, red, raised welts. The ER treated the symptoms (prednisone, more benadryl), but did not identify the root cause.

This could have been caused by the coumadine, it may have been due to a new pill (same prescription, just different manufacturer) she started to take, possibly a couple of injections she needed prior to the coumadin, or even that Pad Thai she had for lunch. She got back to the house just before 3:00 AM and Sally spent the night in case of any further problems. Here is Sally getting into her own bed and 5 hours later she is getting back from the ER to sleep in another house. She was amazing - as she always is. I was pretty much useless other than irritating phone calls to Chris as she spoke to the ER physician. For so many months I have been her caregiver and medical advocate and here I was 200 miles away in NY - not a position I like being in.

So she is still suffering from the rash. She woke up Saturday morning with it all over her, wanting to itch everywhere, literally jumping up and down wanting to get out of her own skin. Large doses of benadryl and the prednisone help, but if we don't stay on top of it, she breaks out really badly. This all of course has just added to her frustration. As we drove to Burlington VT to pick up Melissa at the end of her semester, her frustration really showed. She is "so sick of being sick". "Why is this happening to me?", etc. I know well when she is on the verge of wanting to just breakdown and let it all out, but she allows herself to complain, maybe a tear or two, and she pulls herself together. She is a rock.

We will continue to look for the cause of the reaction. We have been in contact with her primary doctor, her cardiologist, and Boston center and they are working together to determine the next steps. In the meantime she is not taking any coumadin (or pad thai for that matter).

So Saturday, Chris and I drove to Burlington in the snow to move Melissa out of her house (in preparation to a semester in Australia starting next month). It was a very long day with about 6 hours of driving in the snow, packing her up, etc. We got home later than expected, yet ran to a party we had RSVP'd to earlier. We got there late and stayed relatively late. Upon our return home, she checked her mail before going to bed. This is the emotional detour, or crash I could say. As I have mentioned in earlier posts, Chris has been reading other peoples blogs who suffer from this terrible disease (yet still does not want to read this one). She reads the updates, prays for them, we talk about the differences with her care and their unique situations they all are going through. With me, she calls them by their first name, although she has never met them. "Paul had a good day today, Kevin is getting his heart transplant". The one blog she has been following since early fall has been a man in NY (Paul) with 2 young kids who went through the stem cell transplant and high dose chemo a few weeks after her. His wife and caregiver has been faithfully documenting his journey and Chris has felt very attached to the story (and Paul). He went home, she was thrilled, he had dialysis and she felt bad for him. Chris read yesterdays update and it threw her and I an unexpected shot to the head - Paul died of cardiac failure that morning. Two boys, 3 years old and 9 months old, a young wife who had been his caregiver, advocate, emotional support, etc. are left behind. They fought this battle as Chris has, with fortitude, optimism, many many tough periods, and with an incredible determination to beat this and get back to a normal life. Chris is devastated. Such a long, difficult, yet courageous battle only to have lost it in the end. Chris is scared, angry, confused, and very very sad for the family. This has thrown me for a loop as well, a big loop, as it brings the reality home. I can't share my emotions with Chris when she needs strength to lean on, but damn. DAMN THIS THING!

If you want to read a very tough story, here is Pauls blog:
http://gettingpaulhealthy.blogspot.com/2008/12/very-sad-day-indeed.html

Chris and I will get our act together and face the holidays with the joy of the season. We will have my entire family together and see almost all of hers in the next week or so. She has had a hell of a week, but she will do great. Keep praying for her. I'll give another update before Christmas.