Ups and downs and all arounds

Hi blogger world! Another lengthy break between posts. I thought I would give everyone an update on the happenings in our lives.

I'll start with my health and get that out of the way. :) Most of you know they found skin cancer on my toe of all places. Yeah, that's what you get for being immunosuppressed. To make a long story short.. thought I was going to have to have it surgically removed, and a skin graft done. Saw a surgeon at Duke yesterday and he seems to think "that would be like putting a campfire out with a fire truck". Hehe. He said it would do the job, but he thought that was way overdoing it. Squamous Cell Carcinoma or SCC can become invasive and in rare cases metastasize, but he doesn't seem to think that I have reason to worry about either of those. For right now, I'm just going to be using a chemotherapy-like cream on it called Aldara. I use it on my face also for some places I have there that look suspicious. I see my dermatologist pretty regularly at Duke, so she will keep a watchful eye on it.

I have been having some swelling for the past month or so. I saw my nephrologist yesterday, and he doesn't think it's my kidney causing it. He ran a few extra tests to make sure, but if I continue to have it, I will need to have some studies done on my heart and liver to rule them out as the cause.

Let's talk about hair loss.. ughh!!! So, you all know I lost most of my hair after my lung transplant, a lot of my hair after my kidney transplant, and that the rATG treatment I had for my chronic rejection back in March was beginning to thin it too. Well, these past 2 weeks have been awful as far as hair loss goes. I'm not so sure why I'm so prone to hair loss when I'm given meds to knock out my immune system. I have friends who have been given much stronger meds, and it didn't affect their hair in any way. I'm frustrated!!!! I really am. This is the 3rd time, and I know if I ever have to get another treatment for my chronic rejection again, it will happen a 4th. I am taking Biotin and using men's rogaine (per my dermatologist's suggestion), but so far, I'm not seeing any difference.

So on to more exciting things... Casey has had a very busy summer. She has been to the beach twice, to Sint Maarten, will be going to visit her cousins in Pennsylvania for a long weekend, and will go with my family to the mountains in several weeks. She is currently in the middle of her driver's ed classes. One week down after today, and one week to go. She gets her learner's permit in November.. YIKES!!!!

She wants to start tutoring this coming school year to raise money for her Spain trip that she is taking next spring. Her father and I have told her that we want her to raise $1000 for the trip, so she has already been saving her allowance. We'll see how that goes. LOL.

Jason is working a crazy shift now.. 11 am to 8 pm. It's really not so bad, because he gets up early and gets things done, and since we eat dinner late anyway, he is home for dinner. Of course it's not the ideal work schedule, but much better than the night shift. We aren't sure how long he will stay on this shift.

We FINALLY, yes FINALLY have our house up for sale. We've had one interested buyer, but haven't heard back again from her. We haven't really advertised yet other than sticking a for sale sign in the front yard, so I'll be getting on that this coming week. We are looking to move about 20 minutes from here, which will be closer to Jason's work, and closer to the school that Casey's current school will be moving to in 2011. Plus, it will get us out of city taxes which will be nice.

My birthday party is coming up as most of you know. We still have a lot of planning to do.. most of all... meeting with our caterer about the menu. I'm super excited about seeing all of my family, old friends, new friends, friends I've only known from the net, etc. What a great time it's going to be. I have to admit I'm a little anxious though, because of my hearing loss. I don't do well in social situations that are noisy because of that. Of course I'll have my hearing aid on, but I'll still struggle with it.

The rest of my family is doing well. My nephew goes to kindergarten this year.. just super unbelievable. The pups are good, and in general.. life is good. I hope it is for all of you as well. XOXO

Random photos:

HUH?

That's what you'll hear me say a lot if you ever talk to me in person or on the phone. In response to Somer's comment on my last post, I thought I would tell you a little about my hearing loss.

Prior to my lung transplant, I was diagnosed with a very virulent infection called Mycobacterium Abscessus. In order to treat this, they had to put me on long-term IV antibiotics. The type of antibiotic I was treated with was called an aminoglycoside. I was on Tobramycin for one year, and Amikacin for about 18 months... a total of 2 1/2 years on IV antibiotics. This wouldn't have been so bad, had they not been damaging to my ears (ototoxic).

Because of this long-term treatment (that mainly kept my fevers at bay, but did not stop the mycobacterium from ruining my old lungs), I am now mostly deaf. I am functionally deaf in my left ear and have very little hearing in my right. I can use the phone with my right ear, but the other party has to speak very clearly in order for me to understand them. I find that speaking with other CFers is very difficult, because we all have that raspy "CF voice". Because I have mostly high frequency hearing loss, I can hear men a lot better than women.

Living with someone who has hearing loss can be very frustrating. I am so thankful that Jason and Casey have such patience with me. They are my interpreters. Whenever we are out somewhere and someone mumbles a question to me (and believe me, there are a lot of mumblers out there), I don't even have to ask Jason and Casey what they said, they automatically look at me and tell me. I don't understand Casey's friends either. I think it's a teenager thing to look down and mumble, or to talk fast. Casey articulates her words very well, because she knows she has to with me. She interprets everything her friends say to me. When Jason and Casey aren't with me, I find it very difficult to function in the outside world. Hearing loss isolates you. I am no longer outgoing, and I shy away from just about all social situations. If there is music in the background, I will just sit in the corner away from everyone, because I will not be able to hear anything.

I do have a hearing aid for my right ear. A nice digital one that cost an arm and a leg. It helps in some situations, like church, but when there is background noise like in restaurants, it doesn't really help that much. It has a setting that is for "noisy situations", but I don't find it that helpful. I'll be honest, half the time I don't even wear it.

This past hospitalization at Duke was very difficult. Jason wasn't with me to interpret what the nurses said, so I found myself just saying yeah to about everything they said. I read lips pretty well, but still have a difficult time with women who don't speak up. The male nurses and docs... I can hear pretty good.

They told me after I had my lung transplant (and was able to stop the IV antibiotics) that some of my hearing might come back. It didn't. It's actually gotten a little worse over the years for whatever reason. I also find that when I'm lacking sleep or dehydrated, the buzzing in my ear is a lot worse. This makes it very difficult to hear anyone unless they are close to me, looking at me, and speaking very loud and clear. I'm just so thankful for closed caption, because otherwise, the tv would just sound like a foreign language to me.

Funny story... when Casey first met my friend Lori (who unfortunately, also has hearing loss), she said "Mom, she has the same dumb look that you do". Lori and I thought that was hilarious. If you are one of the many CFers with hearing loss, you know just what she's talking about. It's that look that you give people when you have no idea what they just said, but you don't want to say "Could you speak up, because I can't hear you". LOL.