Changes

One thing I've learned about MCAS is I never know what to expect. And the experience I have may be completely different than another person's even if we were on the exact same medicines. But, as hard as it is, I can't give up, I have to keep pushing on.

I've definitely had improvements, it has been a long time since I've had anaphylaxis. In fact, it was while I was in the hospital in Feb when I had my last one. I've been on a Chemo pill since about the end of January. I started at a 100 mg dose and have gradually moved up to starting the full dose today.

I think because I'm not going into anaphylaxis I'm noticing smaller reactions. The other day I was putting a frozen dinner, that my mom had made, into the crock pot, I ended up touching it as I put it in and I ended up swelling up and having a full reaction. That dinner looked so yummy but I didn't dare eat it because of what just touching it had done. I reacted to banana touching my hand, my whole are swelled along with my lips and tongue. I am constantly amazed at how this disease affects my body.

Being on the chemo has been hard on me. The diarrhea is constant and I feel nauseated most of the time. I don't eat much because almost all food makes me sick. Doug makes me yummy mashed potatoes often and I make smoothies, get them from Kneaders or my mom brings me them from McDonald's. Unfortunately, this is not enough to keep me properly hydrated, I try to drink but it's so hard to hold anything down. Because of dehydration I've had to go into the ER twice to get rehydrated. Luckily, I've got a new friend at home, I call him, Wilson,
the nurses are trying to teach me to access my port.
It's a good thing my neighbor, Melissa, has been willing to run over at a moment's notice to help me or else I'd have made a big mess of it. But her 18 years of nursing in home health are paying off for me!

The other side effect I've had has been the loss of hair. Now, this is suppose to be a rare side effect but I seem to like the rare. I've known that my hair was falling out but never enough that anyone would notice until one morning Doug found a big clump of it on the floor. When I showered that day I ran my hands through the top of it and the top came off.
This was frustrating but I thought that maybe my miracle hair worker could give me a nice comb over. Unfortunately the next day both sides of my hair fell out. I knew this was the end, it was time for the trusty clippers. I already had a hair appointment scheduled so I went to see Mindee and let her do the handiwork. I'll admit, this was emotional for me, I cried off and on for two days. I'm getting more used to it now and have pulled out my hats, friends have given me hats and I even figured out how to wrap a cute scarf on my head.

Just today my mother-in-law found a web-site with lots of cute hats and scarves. She let me spend some time shopping on it and she bought them for me. I'm anxiously waiting them to come! I've actually always loved hats so maybe this isn't such a terrible thing to be able to wear hats always. And I always have said; "It's just hair, it'll grow back." We just don't know how long it will be. In the meantime, I hope I don't freeze! Who knew hair kept a person so warm!

Katie and I decided that we would make a fun bonding activity out of it. We bought a henna kit and let her go to town on my head.


I think she did a great job! And it stayed on for about three weeks. Maybe there's a new career for Katie's future!

Our family has been the recipient of endless hours of service and countless prayers. We feel our burdens lightened because of them. We are so grateful.