Monday, November 19, 2012

Sensitive Reactions

About 10 years ago, while Chad and I were living in Geneva my sister, Molly, and her husband, Tom, came to visit us. Since we had visitors so frequently, we encouraged them to go some place we had not been one of the weekends they were in Europe so we could see more while traveling with them. Molly and Tom hung out with us in Geneva one weekend and then went to Paris and did other touring and then we met up with them in Normandy, France. It had been on our list for awhile but we had never made it there.

We all wanted to go see the D-Day beaches. So one overcast afternoon we started at the visitor center and then made our way to the beaches and then the cemetery. It was both somber, but beautiful at the same time with the cemetery right there overlooking the beach. We had pretty much finished looking around and were starting to find our way out when we passed a couple about our age walking the other direction. I don't think we would have looked twice at them if the man had not being wearing a new Lake Placid baseball hat and sunglasses. It was way too cloudy to need sunglasses, but what caught our attention was someone around 30 wearing a new Lake Placid hat in Normandy. We had grown up going to the Lake Placid area where my dad's family has cabins. There is definitely an age minimum on those hats, and this guy was no where near it.

We did a double take and realized it was Matt Damon and his girlfriend. Much to our both of our husband's extreme embarassment, we turned right around and starting going where they were going. Matt was telling his girlfriend all about the filming of "Saving Private Ryan". We could not believe he sounded just like he did in movies. We did our best to get a photo of them casually behind us. Unfortunately nothing came out of this except for us catching the attention of his security guards who shooed us away.

I was pretty pregnant with Katherine at the time and needed to use the bathroom as we were leaving. The bathrooms by the parking lot were locked and Matt Damon's security detail was not letting us back in to use the other ones, so we decided to hop in the car and find one on the road. All excited from our celebrity siting we raced off.

While the French countryside is beautiful and has much to offer, it was very sparse in the way of restrooms. After awhile we decided to find a good, discrete bush. I'd been a Girl Scout and done my share of camping. Chad pulled over. I did what I needed to and feeling much better got back in the car.  After about 15-20 minutes though I started itching. Then I realized there was a rash coming up my  backside around my belly. I did not think I had touched anything when I relieved myself but clearly was having an allergic reaction.

It got harder for me to breathe, Chad drove faster, Tom watched for signs for hospitals and Molly tried to keep me calm and from itching my skin off of myself. Luckily we found a small hospital in the next town. We pulled right up, we were the only ones there and they saw me right away. Luckily my French was decent at the time, but I remember not having all the vocabulary I needed and explaining in my broken French that there was no bathroom so I had to use a little tree (could not remember the word for bush)... The doctor luckily figured out what I was saying, got me meds that were okay for pregnant ladies and we were off again. We were starving at this point and discovered a great restaurant and cool church in a little town.

I cannot relate the Matt Damon story back to anything except that maybe I have a history of being inappropriately, light hearted even when I am in places that would lead most people to be sad and serious. The Matt Damon sighting though is forever linked in my mind with the peeing behind a bush while pregnant and ending up in a small French hospital because of my allergic reaction.

I am clearly rusting on blogging from being home and lured into all there is to do here at home... so what is your point you say? I have a history of having weird allergic, and sensitive, reactions. I had an allergic reaction to a spider bite this Sept which is very uncommon, and I had multiple allergic reactions to medications in the hospital, "to all the good drugs" in the words of a fellow chemo patient. My prolonged count recovery also falls into the sensitive reaction camp.

As Chad said, the specialist on Friday was very reassuring. He said the chemo drug I had is the standard treatment. It is also very toxic. He was not surprised it was taking longer for my counts to recover. He has been researching and treating patients with Hairy Cell Leukemia (HCL) for several decades. I asked if he tended to see longer count recovery in women. He said he had never looked at that or thought about that (which surprised me). Given this is a rare disease where the base size of the studies is small 10-30 people, and the disease is so skewed to men would make sense to me that most of the research has been on men. Some of my issues, or complications, in the hospital are only seen in younger (having hit the 40 mark will give up young but will still cling to younger) women. Clearly the chemo drug is having a stronger than normal impact of me given my prolonged count recovery times. Fingers crossed in this case the strong reaction is against both my healthy and cancer cells. I'd gladly trade off a longer recovery time for a complete and long remission!

One downer with the specialist was he said with this treatment if I was lucky I would have 10 years before it came back. I smiled and said at 40 was hoping for more than 10 years. (Then my husband so kindly pointed out that doesn't even get me to retirement age of 55.) Hopefully this treatment buys more time for research and new drugs which it sounds like there are a few of in the works. HCL is highly treatable but not curable. So at some point I will need another round of chemo. The doctor Friday was very helpful walking through options, how frequently he would recommend doing blood work on a going basis and all of our questions along those lines.

We ended last week feeling positive and being reassured about where we are and my prognosis for recovering at some point. I was back at my doctor today for my weekly lab work and unfortunately not much progress on the counts. My platelets are up a little, and my red and white blood cells are flat. Next Monday if my reds are flat to up then this will mean I am no longer transfusion dependent, and I will get my PICC line (my central line) pulled which is a big milestone but then just need to hang at home until my white blood cells come up from the dangerously low territory.

So for now, am still trying to rest, recover and enjoy being home.

Oh, and I almost forgot, the question I know you all have... were there new word games in the lobby today? I was quite impressed that there was a new crossword puzzle but no new word search or scramble. Thanks for the help on the words from last week.

1 comment:

  1. So, this might explain why you didn't choose the tree I chose during the Great Wall Marathon 2011...
    Cheering for those Red & Whites to come up, come on cells!!
    Wishing you, Chad, Kath & Marg (and Lilly) a very Happy Thanksgiving!!! xoxo, Karstens x 4 (and Kooper)