My new, old love

I have had this series of long term relationships over the years. With music, not with men. Since the time I've been old enough to choose what I listen to on my own, I've dated several different genres. I tend to listen to only one 'kind' of music at a time, with maybe just a little sprinkling of others in the mix. Most of my teen years were spent listening to top 40 Pop stuff. Then I had a very long love affair with Christian music that lasted from college through the time I started Grad school. I even had a short fling with jazz while I was in Seminary. About three or four years ago, I had my first relationship with Country music. It lasted about a year and then quickly faded into a love for hip/hop and R&B. During this summer, my love affair with Country music has been reignited.

I've been a little better this time with dating around and including other types in the mix, but mostly, my car radio, my Pandora stations and my MP3 player stay on Country tunes. As silly as this might sound, Country music reminds me of home. Yes, I realize that I quite literally live at home. But there is just something comfortable and familiar about the melodies and music of Country. I think it's one of the few genres of music that can make you feel the entire spectrum of emotions.

It's possible that this rekindled love was influenced by the 8 or 10 trips to Nashville I took this summer. I took advantage of each, and although I experienced other types of music there, was most impressed by the Country. So I admit I was one of the last to know Sugarland was going to be in concert in Nashville this past weekend. I've been a fan of Sugarland since their first album, although during my hiatus from Country music, missed an album or two in the middle. Anyway, if there is ONE group I'd want to see in concert, Sugarland would be the one. The Nashville show sold out quick, I'm sure since they were playing with Keith Urban. But cool as my dad is, he hooked me up with a pair of tickets to go anyway. I packed my clothes and grabbed one of my favorite people in the whole world and headed to the show on Saturday.

Our seats were not good. Really, they were in the top section. Thankfully we were facing the stage so our view was clear...just VERY far away. Surprisingly, I didn't care. Neither did Claire. From the first note of the first song until the last, we were caught up. There were even tears a couple times throughout their performance. It was such a great experience. I can't remember the last time I just felt that happy and carefree. The thing is, this wasn't just a concert of a band I like that I went to with a friend. It was a lot more than that. It represented some of my favorite things in the world and I got to experience them in what felt like perfection. Not a night I'll soon forget.

So, my relationship with Country music continues although we aren't exclusive. I'm still dating around and may never commit to just one, but Country remains the frontrunner for the months to come. I look forward to many more happy times together.

The "what, the "how" and the "then what" of it all.

Over the past few months I've gotten lots of comments and questions, said with a good amount of surprise like, "Wow, you look really good" or "You seem to be doing great" or even "You don't look sick". Most of these come from people who either don't know me well or haven't seen me in quite some time. It's true though, I do look and seem pretty normal...from the outside and when I'm just sittin around. I've had lots of questions about what Scleroderma means to me, as in, how has it affected my body and my daily life. And of course, people want to know what the hope is for the transplant.

Each person with scleroderma has a different story to tell. In many ways, I consider myself fortunate. My skin is affected but only in my hands, forearms, face, neck, chest and shoulders, with my hands being the most severe area. Even though my hands are the worst and they are limited to some extent because of skin tightening and thickening, I still have, what I consider, good use of them. Mostly I'm just limited in things like opening cans or bottles or doing anything where I have to use a tight grip. My lips have thinned and my nose has narrowed, but these are cosmetic and are not at all threatening to my health at this point. I also experience issues with heartburn, which is very common in people with scleroderma. There is often some scarring and issues with the esophagus but for me, it's as easy as taking a pill each day and I have no more heartburn worries.

The most serious and alarming issue that I'm facing is the progression of fibrosis in my lungs. Their function has been very seriously affected and is what prompted the updated diagnosis and choice to receive the stem cell transplant. Without explaining every measurement in detail, and as I understand it, most adult non-smokers have about 80% lung function. Mine is somewhere in the lower 30s, last it was measured in April. I received chemotherapy once a month for the first six months of the year to address this problem. I had little or no improvement as we expected and continued to pursue the transplant. As far as my daily life, I do have to take my lung function into consideration. I am commonly short of breath in activities as normal as showering, dressing, fixing my hair, etc. I've learned lots of ways to adjust the way I do things and have had to eliminate some things I used to do. I take more baths than showers and give myself more time to get ready than I used to. I don't do the amusement park thing anymore and I'll plan to only go to 1 or 2 stores instead of shopping all day. I'll ask to be dropped off at the door instead of walking blocks to our destination and I might only dance to one song (and rather slowly) instead of being on the dance floor all night. HOWEVER, I can still do lots of things I love and I do in fact still look pretty normal. I feel blessed to still be able to read, see concerts and live music, eat out with my friends, play with my nieces and nephews, shop with my mom, sing in the car and laugh with everyone I love.

So, what are my hopes and expectations for the transplant? First of all, my hope is that there is no longer any active progression of scleroderma in my body. In other words, I want it to never get any worse than it is right now. Secondly, I hope that over the course of the first two years post-transplant, my lung function improves at least 20-30%. And of third importance, I'd love for my skin to soften and be flexible and pretty again. Opening a jar of peanut butter would bring great joy! :) As far as I know, because the transplant is still in the investigational stage, there aren't a lot of published statistics on the outcomes. I know that over the past several months I've learned that the number of people with positive outcomes FAR outnumber those without. With most things in life, there are no guarantees. I am willingly going through the transplant with no promise that I'll get "better".

I understand this but I choose to believe that I'll have many more years to enjoy life and those I love. I even choose to believe that many of the dreams I've had for my life for many years will still happen. I believe that one day I'll play guitar again, that I'll be a member of a gym, and that I'll have a family of my own. I know that someday I'll walk around Rome and I'll go back to Africa. I don't say any of this because I'm trying to be inspirational or to convince anyone of my "great attitude". I'm saying these things so that you each know how much I have wanted/needed your prayers, encouragement, positive thoughts and kind words. I have used them and will continue to do so. Thank you, thank you, thank you.

The Lowdown on the Stem Cell Showdown

I received the transplant info and I promised to share so here ya go! The date to begin is scheduled for Tuesday September 8th and we'll head up to Chicago the day before. So, here is the general schedule for the transplant:

Sept 8-18 -- Outpatient daily testing including but not limited to, Pulmonary Function Test, Chest CT Scan, Right Heart Cath, dental exam, vein check, Heart Echo, and something like 5 zillion blood tests. There will also be other tests, but I'm not sure what they all are. Basically, they are going to check every inch of my body, inside and out. Sounds fun, eh?

Sept 21 -- I will be admitted to the hospital for mobilization chemotherapy. I will receive the chemo and then be discharged the next day. Within 5 days after mobilization I will begin taking Neupogen injections daily for 6 days.

Oct 1 -- This is stem cell harvest day. I will get a catheter in my jugular vein to pull out my stem cells. If there are not enough stem cells collected this day, they will repeat the harvest the next day.

Oct 3- Oct 21 -- THIS IS THE BEST PART!! I get to go home for almost three weeks! I had no idea this was the case and I am soooo happy about it. I won't feel bad yet and I'll get more time with my family and friends before I do!

Oct 22 - Nov 7 -- On the 22nd I'll be admitted and begin chemotherapy. I will receive chemo for 5 consecutive days. The sixth day, which would be Oct 27, is transplant day! I'll get my stem cells back, then we wait for my immune system to rebuild itself. Anticipated discharge date is Nov 7. It is possible and likely that I won't come home immediately following discharge as I will likely have to be close to the hospital for at least a week for check ups.

I am glad that we anticipate being done and home before Thanksgiving and I pray that remains the case. I have no desire to spend the holidays in the hospital! I have lots of things planned for myself in the next 2 1/2 weeks before I head to Chicago. The nervousness and anxiety are ever present, but I am confident that I am equipped with who I need around me and what I need inside me to successfully fight my way through. I can't promise I won't whine or complain or vent along the way, but I promise to try my best to keep the goal in sight. Thank ya for readin' and followin' and prayin' and lettin' me know I'm loved. And now I'm off to pack for my very first trip ever to the Indiana State Fair...yeah, that's right. Be jealous.

Loving With Intent

I'm in my third night of a short "vacation", as I'm calling it, to visit a friend in Nashville. I plan to leave tomorrow and head back home but can't seem to fall asleep as my mind is so full. I was thinking about all the running I've been doing lately: the short roadtrips, the dinners, concerts, movies, nights out with friends, shopping trips, etc. And I suddenly realize what I haven't been mindful of...my need to just experience feels urgent. Experience any and everything. If I'm totally honest, I feel hopeful the transplant will be a great success and deep in my heart I feel I have a lot of life left to live. However, I understand the reality. There are no guarantees here. I am not promised old age...or even middle! So knowing the transplant will begin within the next month, has moved me to action. Action in everything but maybe the most important thing.

A few weeks ago I had a conversation with an old college friend and we were talking about the fundraising and all the money that had been given and all the hard work that had gone into each event. She stopped and said, "Doesn't it make you feel good to know you're so loved?" I told her I did but then I told her that in a way it made me sad that I had to get sick to realize it and how we should all, myself included, be more intentional with our love. So, I've been sitting here thinking back about my weekend and all the fun I've had and the great things I've experienced and it hits me how many opportunities to love people I've missed.

Don't misunderstand me. I'm not beating myself up unnecessarily. I do believe that in general, I'm a nice person. I try to be kind and understanding and forgiving. But I'm talking about doing more. There are many times where if I weren't so caught up in myself or just plain lazy, I'd love people in actions so much more. I know I'd be well served to think of others more often, work to meet others needs and be more understanding and accepting of differences.

I have amazing family and friends who show me how loved I am all the time...and in little ways. I get dropped off at the door. I get my chair carried for me to Shakespeare in the Park without even asking for help. I get my cans or bottles opened so I don't injure my fingers. I get an extra blanket or jacket when I'm cold. I get phone calls, letters, cards and emails just to see how I'm doing. The people who love me, do it well.

I'd like, myself, to be this way all the time. I want to recognize opportunities to love and encourage and I want to take advantage of them. I wish we all would. I believe being mindful of people outside of myself will make my life better. I believe God feels this way too and I'm thankful He's put so many great teachers in my life.

Bloggin' it

I've gone back and forth a lot and struggled with the decision to start a blog. I worried about having nothing to say or seeming arrogant, assuming people would want to read about what I think and do. The truth is, never in my life have I felt like I had more to say. Maybe none of it will matter to anyone but me, but I can't escape the desire to write it all down. On top of this, I have found myself in recent months scouring the internet for websites and blogs of other people with scleroderma. I just wanted to know their stories. I wanted to know what happened to them, how they dealt with it, what they did about it. Each time I read something I found myself wanting to know more, wishing I could get more details or more explanation. So, I figure here's MY chance to do that for someone else. I can talk about the disease or the transplant or the fact that I had fillings done in my teeth today and still managed to eat three donuts! I'm not sure the donut info will help anyone, except maybe to show that things may not be perfect for me right now, but I'm enjoying my life in spite of it all.

Though this is technically my first post on this blog, I have already posted some things I've written and previously posted on Facebook or my website. I will no longer be updating in either of those places. So, be sure to check here if you wanna know what's up.

Many people have asked when I'll be going to Chicago for the transplant. I'm disappointed to tell you that I STILL don't have a date. However, we expect it to be in the next 3 to 4 weeks. For me, that's plenty soon! Besides, I'll just use this time to squeeze in some more fun, make a few memories and have a couple more donuts!

Kidneys and Football

I'm one of those people that spend their Sunday afternoon and evenings glued to the TV during the fall and winter months soaking in as much of the NFL as possible. I love football. So, I was no stranger to the man I saw as I walked into the dinner party I had gone with my dad to cater earlier this week. Former Super Bowl Champion quarterback for the Dallas Cowboys, Troy Aikman. He was friendly and gracious enough to pose for a few pictures. He even came into my dad's restaurant for breakfast the next day and you better believe I didn't miss that either! It was a really fun, exciting experience for this small town girl.

Also, since I last posted I had a bit of an issue with what we thought were kidney stones, but thankfully were not. I did have an acute kidney infection and took a little trip to the ER. I'm not sure which hurt worse, my kidney or the fact that it caused me to miss the Def Leppard and Poison concert I had been looking forward to. Either way, the pain from both has passed and all is back to normal.

I also attended the Comedy Fundraiser in Indianapolis that my friend Claire organized in conjunction with her 30th birthday. The whole event went great and my face and stomach hurt when we left from smiling and laughing so much. What an incredibly talented group of people who are also incredibly kind to give their time for me. I had a blast!

I also wanted to take a minute and recognize an individual who has been a great help to our fundraising efforts. Months ago, Ed Ewing, who is a pal of my dad's, pledged a $10,000 contribution to the fund for my stem cell transplant. I hadn't seen him since May and I finally ran into him again this past week and he was kind enough to let me take a picture with him. He and his wife, Linda are so kind to donate in this huge way and I wanted them to know how much I appreciate their generosity. Thank you so much Ed and Linda!

Although I don't have an exact date yet, my mom and I plan to be heading to Chicago by the end of the month. I will update more as soon as I know and in the mean time, I covet your prayers and encouragement. Thank you all again for your love and support.

Grace and Peace to you.
Beth Ann