KISS Committee

It's amazing how when God shuts one door He opens a window. As I mentioned in my previous post I used to be the Youth Ministry coordinator of my childhood Parish. I ended up leaving this job by choice but probably just before my position was "eliminated". A writing on the wall kind of thing. The problem is I LOVED this work. I loved working with the teenagers in my charge. They kept me young, made me laugh. Lifted my spirit when I was down. They renewed my faith in the coming generation and they reminded me that with Youth nothing seems impossible. I also was not asked to come back and teach confirmation which I expected and am fine with but still pissed me off. (That people can come in and uproot my entire Parish is something it took a long time to get over.) Soooo I have a little bit of extra time.



And of course today I received a phone call to give up some of that time - to The Foundation For Sarcoidosis Research . I was asked to be on their planning committe for their annual K.I.S.S. (Kick in to Stop Sarcoidosis) Event thats held in February. I was super honered and very excited - until I was told I'd be responsible for selling 10 tickets @ $150. But with the support of my husband and some amazing friends I think I can proably sell the tickets. We volunteer at this event almost every year and people always ask me how we came to volunteer and most are shocked to find out I have Sarcoidosis.

So thank you God for giving me an opportunity to help myself and give back to this foundation that raises research money for this disease. When I was first diagnosed there was only one website that I found helpful - and when I was able to meet the founder and President just a short while later I was so grateful. Come to think of it that was a chance meeting too.

I Answered "Good"

I had a wonderful Labor Day weekend. We had beautiful weather. My idea of PERFECT infact. I had a slight set back on Sunday as I a) skipped the sunblock on my body prior to the baseball game b)forgot that the Methotrexate makes me even MORE sensative to the sun. I'm pretty pasty to begin with so my skin tone is currently "lobster".

I was able to spend Monday with my Mom which was really nice. (We work together so I see her everyday but Monday was all about hanging out and not work.) We hit the big craft fair which turned out to be a pretty emotional morning for me!?!?!

The first thing that had us crying was the generosity of a complete stranger. We had wondered over to this booth that had the "This Hat Looks Good On Everyone" Hat. Priced $40 they were really soft and several different styles and colors and versitile. The lady came over to help us and we had said - My Grandma is going through chemo. She's going to loose her hair. So after a few minutes we settled on one. When Mom went to pay she handed her the bag and said, "this is for Grandma...No charge." Instantly we started to cry. I couldn't believe this woman just handed over her handiwork to a complete stranger. She had no idea what an impact that gesture could have to a family so blindsided by illness.

A little later I heard my high school band marching down the parade route playing the song we played in Disney World at Epcot. "Late in the Evening" by Paul Simon. I got goose bumps. Then my Mother started crying. She has a great memory of us coming around the corner at Epcot playing this song and its so important that we played it at our reception to announce the wedding party. Seriously we have to be the only two people in history to cry at a craft fair.

As we were leaving a group of the Miss Septemberfest contestants walked by and one of them was a previous Youth Minister of mine. I started this blog after I had parted ways with my job as Youth Ministry Coordinator of my childhood Parish but these teens were a huge part of my life and I miss them a great deal. She looked lovely in her red gown and as I called out to her she came running back towards me. She gave me a big hug and said "I miss you". It warmed my heart. She then asked me how I was doing healthwise and I said "good.. everythings pretty good".

The answer suprised me. If you had been living inside my head you would understand how incredibly far I've come. No longer do I have the urge to educate EVERYONE on neurosarcoid or make them understand why I was feeling like a basketcase. I've accepted the fact that I have an illness but I've been able to stop thinking of my life in terms of before and after I became sick. And i've veen stopped labeling myself as sick. I was capable of a normal answer. And I didn't feel like I was lying. Its true I am good. I've got a way to control my pain. Doctors working on a solution and a sense of control about everything that a year ago I wasn't capable of. And the insight to recognize this truely makes me feel like I've won something. But even more I knew and believed that this young, beautiful spirit in front of me really meant that she missed me. The confidence I had lost has been restored and I was able to feel the concern in her voice. I promised her coffee and she said she'd like that. :) And then I felt old ....

Grandma Update

So its Ovarian Cancer which falls under the "Do not read the information on the internet and if you do take it with a grain of salt" category. The stuff on line is pretty grim mainly because Ovarian cancer is not one that is usually caught early. It usually is caught after it metasticizes and starts to cause symptoms that prompt doctors to do scans. Her Gynelogical Oncologist and Oncologist have told us that this is treatable and that they can keep the Cancer under control for some time time, years in fact. And her chemo is fairly forgiving on the body. She won't experience any other side effects other than loosing her hair. I'm sure this is going to be upsetting but its worth dealing with to get back to living.

Life's Short - Make it count

This was last week's lesson. My grandmother was admitted to the hospital for Pneumonia. Only it wasn't Pneumonia that was the main issue. It's the cancer they subsequently found. And as someone who works with cancer patients daily the diagnosis in and of itself is not necessarily the scary part. But the talk of treatable vs. curable, large masses, metastatic disease, and a jump straight to chemotherapy scare me to tears.



I'm nearly 29 so I know I'm fortunate to still have 3 of my 4 grandparents around. And I understand that people don't live forever and while no one has given us an arbitrary amount of time - no matter how long its not enough. And illness doesn't knock on your door and say "Is now good for you? I'd really like to shake your world upside down." You can't tell it "No. Sorry you'll have to come back another time because I just got my life back together and I'm on a treatment that might finally work and I haven't had kids yet and they need to meet her and I prefer it was with her hair all there."

Never did I think that someday I'd be giving advice to my Grandma about how to handle a chronic illness. And maybe that's part of why I have to go through mine - to be able to understand and support and empathize with others. As she talked about the fear and the exhaustion I understood in a way I couldn't possible know 20 months ago. I agreed it was hard to get people to understand that what you could do a few weeks ago you are no longer capable of. And I was not embarrassed for her as she wavered between tears and resolve because that happens too and its OKAY.

My cousin called me and his first words were "Rhiannon, I don't know how to feel about this. I don't know how to go about the rest of my day." And my brilliant response? "We just have to do the best we can do and be the best people we can be and continue making Grandma proud." And after some of his resolve wavered so did mine, somehow we were able to get off the phone both of us feeling better. Even more though was my Grandma's response "I'm so happy he called you it makes me proud to know you have each other." We've been doing a pretty good job of making Life count. And that gives me some strength as we gear up for this next battle.

The Brand is not Saltine

I've eaten a 1/2 box of Saltine crackers by myself this week. I don't even want to think about how much gluten that is but that seems to be the only thing helping my queasiness. When I went to the store to buy the crackers I discovered that they are actually called Premium. Saltine describes the type of cracker as it was emblazoned on the generic brand. I of course bought the generic think hey - its a cracker. I was later informed by my penny pinching husband that I should have splurged on the name brand as they are saltier.

Yes my friends I've entered into the world of chemotherapy. Dr. Sweiss prescribed Methotrexate. MTX for short. And side effects I'm experiencing so far are headache (keep the well duh's to a minimum this is a different type of headache) hot flashes and nausea. LOTS of Nausea. Oh and some vomiting.

My co-worker told me I looked like I should be on a boat today with my striped shirt and linen pants. I told her I felt like I was on a boat. Acupuncture helped some today but I tell you I had needles EVERYWHERE. My knee, my cheeks, my ears, collar bone, chest, feet, hand. We are going to switch my appointments to Fridays so that I have it the day after I take the MTX. The good news the folic acid the doc prescribed is doing wonders for my nails!

I Can See Clearly Now

Sandra Bullock said when she met her baby for the first time the song What a Wonderful World popped in her head. I had never experienced this until yesterday. Sure I've had the opposite happen. Heard a song and had a memory pop in my head. In fact Cannon in D does this to me with my husband. His face as I was walking down the aisle on our wedding day flashes and I instantly feel happy and safe. For the first time yesterday I had I had "I Can See Clearly Now" pop in my head as I was thinking about my medical appointments from yesterday in the shower this morning.

I can see clearly now, the rain is gone,

I can see all obstacles in my way

Gone are the dark clouds that had me blind

It's gonna be a bright (bright), bright (bright) Sun-Shiny day.

I think I can make it now, the pain is gone

All of the bad feelings have disappeared

Here is the rainbow I've been prayin for

It's gonna be a bright (bright), bright (bright)Sun-Shiny day.

Look all around, there's nothin but blue skies

Look straight ahead, nothin but blue skies

I can see clearly now, the rain is gone,

I can see all obstacles in my way

Gone are the dark clouds that had me blind

It's gonna be a bright (bright), bright (bright) Sun-Shiny day.

~ Johnny Nash

I "graduated" out of therapy yesterday. For 3 visits in a row I didn't cry. I felt happy. I could talk about my circumstance without grief and with a confidence I had forgotten I possess. In short, I felt like myself again. Sure a new version of myself one who will no longer be walked all over. One who no longer bottles it all in. One who learned to set boundaries and one who has an entirely new view of the world.



I had a roommate in college who hated this song. Mainly, because the Chicago radio stations always play it while it is raining. (As if the imagery could make us forget the torrential rains we get or the snarling of traffic.) But I've always had a soft spot for it. Why not look forward to the times when there are Sun-shiny Days? And Blue Skies? In my family this is actually an adjective. Blue Skying is dreaming of the impossible or improbable. And the lyrics describe my current - dark clouds no-longer obstructing - view. My pain is gone and my bad feelings have disappeared.



I also saw my specialist yesterday and she prescribed Methotrexate which is essentially "baby chemo". And I'm already experiencing the nausea. And while this might be an obstacle in my way I think I can make it now. At least long enough to get healthy.



Rainbows have always been a sign for me of good things to come. So when I got in my car this morning and the song came on I took it as a sign especially since I was looking straight ahead, nothin but blue skies. It was the rainbow I'd been prayin for.

I'll admit

I'll admit it. Yesterday I was crabby. REALLY Crabby. There was no trigger that I could tell other than pain. Cramps and backache and headache. I was PMSing big time and I don't think I've been that crabby in a long time. I was hot and tired and achey and I just wanted to go to sleep but I couldn't. The heating pad was too hot, my fan was not cold enough and the dog decided that would be a good time to find his new squeeker toy. My husband had retreated to the basement around the time I told him not to hug me and asked me what my problem was.

He had a point. I didn't really have a problem except for the feeling of ALL of my nerve endings in every part of my body firing at once. But how do you explain that to someone who has never felt that? And then I feel guilty since my pain is better shouldn't I be grateful? Its not as bad as it was. And I felt bad for being so witchy to my husband. He was a really good guy yesterday and I gave him credit in the "for future use" memory bank. Next time he's crabby I'll try to be as understanding.

When he came to bed he did rub my shoulders and told me I looked restless and even offered to turn the air conditioning up higher since he could feel how hot I was. I thanked him apologized and then finally fell asleep.