My Daddy

My friend Josh over in Joshland wrote a very touching story about his father.  It made me think of my daddy and some great memories I have of him.  One in particular that stays with me and makes me smile is this one:

When I was in 7th grade my mom and her boyfriend at the time got job offers in Atlanta GA, which they decided to take.  It was a new experience and we were going to pack up and move down south.

At this point in my life my parents had been divorced a good 10 years or so.  Every other weekend my brother and I would go up to my dad's to visit.  He would pick us up on Friday night and drop us off Sunday afternoons/evenings.  I was a very shy child and since I didn't really grow up with my dad, I was nervous around him.  I remember getting flowers on Friday nights from him, trying to bribe me so I wouldn't cry.  There was a guy (he is still there too) that sold flowers out of a bucket right next to the train station.  We would stop and he would get them for me.  I think I loved my dad, but I wasn't really sure about him.  I was 3 when my parents split up so I don't have any memories of him living with us.  Given this history, what happened when we decided to move 800 miles south was shocking.

I remember it clearly.  My dad dropped us off that Sunday night.  I think it was to be the last weekend we spent with him until Christmas (when we came up and spent a week with him in Vermont).  I remember the house, the green sofa next to the front door and sitting on the arm of it while we said good-bye.  Then out of nowhere I started bawling my eyes out and telling him I didn't want to leave him.  Much like in the movie the Patriot when Mel Gibson's little girl finally talks to him and starts sobbing for him to stay.  That scene always makes me think of that melt down I had with my daddy.  I can remember hugging him tight and crying.  I was 12 and finally realized how much I did love my daddy.  And since that point he has been my daddy through and through.  I love him to pieces and can't imagine life without him.

We may not talk all the time, but I know he is there.  I know if I needed anything he would be here.

Something Taboo - Death

I wanted to write about something that most people seem to hate to talk about - Death. So many people are afraid to die, and based on their religious or spiritual beliefs, there are many reasons for this. So based on my beliefs I want to talk about it.

I must first warn against any religious conversations starting. Remember this is MY opinion and my beliefs. So please keep that in mind when reading through this blog post. And also, I am not anywhere near death it is just something I have been thinking about lately.

I am not scared at all to die. Rather, I am scared for those left behind.

When I pass away all my dreams, goals and desires will end. I will have no regrets as I won't know anything after the time my body takes its last breath. However, those left behind will feel the sorrow, the pain, the shattered hopes. They will know I didn't do what I wanted or that I never got to see things I wanted to. They will live with the regrets, if they do, not me.

My niece and nephew will remember me and the times we shared together, but will it be enough? Will they regret that I didn't live closer and spent more time with them? Will they be mad I passed away.

I like to think each and everyone of us goes to Heaven and can look down on those we left behind, but I don't think it is an actuality. I know that sounds crazy. Believing they are watching over relieves some of the pain. Believing I will see my grandparents, Maggie and friends after I pass is something that makes me smile. But I don't think that happens. If it did, then wouldn't I have regrets? Wouldn't I be sad watching over my niece and nephew, not being a part of their lives anymore? So while I like to think it does happen, I also don't want to think it does. Because then, my regrets can continue, my sadness over not being with my family long enough will be stronger, and I may continue that depression from earth into heaven.

So instead I think that when we die, we die. Maybe our souls float away and go somewhere that the rest of the souls are. But maybe we don't have any idea what or who we were. Maybe we are just a bunch of old souls hanging around, waiting to be placed in a new body. I have no idea. And now my post has gone totally off track lol.

So to end this little off course ramble...To me death is an end a total end for the deceased, while the survivors must carry on, remembering the good and bad of the deceased. Death is "easy" for the one who passes.....

Clinic Appointment

As I thought my FEV1 dropped some. Not as bad as I had been expecting, but then again it was only 3 hours post treatment and 10am. My weight is down 5 pounds, which was to be expected from the hysterectomy. My FEV1 is around 36% which is down from 43% last time. Certainly not the lowest I have been, but down from baseline.

The course is to do 2 weeks of oral Levaquin and see how I feel after that. My next appointment is on September 9th, but she said if I get back from my vacations and nothing has changed, I don't feel any better, then to call Tuesday after Labor Day and they will set me up in a room to start IVs. So I am hoping I get some relief from the orals so I can make sure I am able to get to my first grad school class on September 13th! And then to my overnight evaluation on September 26th (I was able to schedule it for 2 weeks later since it would have interfered with my first class).

Here are 2 pictures from today's appointment:

The first picture shows my numbers for the past year. You can see how much I fluctuate. The second picture shows my fluctuations on a graph, which really shows how I am.

Some relief please!

This Wednesday is my clinic appointment and I am looking forward to it like no other.  I think I am due for some IV antibiotics.  Going into my surgery I was healthy and I am glad I was where I was.  But coming out on this side, I just can't recover those days where I couldn't cough much and it pooled in my lungs.  I am curious to see just what my FEV1 has dipped to.

The shortness of breath is bad.  The need for at least 3 treatments a day is strong.  And my energy is non-existent.  This past Friday I had my 3rd dance lesson and I coughed the whole time.  I actually had to explain to my instructor I have a lung disease and that I am not contagious, nor about to keel over (we hope lol).  About 30 minutes into the 45 minute session I was done, but I forced myself to complete it and then passed out on P around 7pm for a quick power nap.  Literally I was laying on his arm lol.

Today we went car shopping and it completely drained me.  And we only visited 2 lots!  Happy to say the second lot we purchased a vehicle (Mazda CX-7).  So we had to hang around to do all the paperwork.  I was just so tired I could have curled up on a bench and slept for hours.

I will be sure to post an update on Wednesday after my appointment!

My First Transplant Appointment

Today was surreal, but not really an emotional day for me.

When we first walked into the clinic and I saw the “Lung Transplant” sign on the wall I got that burning sensation in my eyes that I might cry. But I blinked them back and proceeded to check in. Because I had quite the entourage with me, P and I stayed in the lung transplant waiting room (I was masked up) while my family stayed in the adjoining one.

Right around noon I was told I was going to need to leave the clinic because there was an emergency appointment coming in and we were infectious to each other. She took my number down and we all went to lunch in the café. We were able to return to the clinic around 1pm and were lead into the viewing room to watch a 30 minute video on lung transplants at B&W. It was very informative for my family, and somewhat for me. A lot of the stuff they talk about I am blessed to know already from my extensive online support community. When the video was over we all headed into the waiting room, together since we were the only ones in there at that point. I got a nice surprise then!

A woman who had been in there earlier, also wearing a mask, came over and said I looked familiar. Turns out she reads this blog! So hellooooooooooo!!!!! ***waves energetically*** It was really nice to meet one of my readers that I am not familiar with. It made me feel really great that people out there do read my stuff.

The rest of the appointment was just a physical exam followed by a question session. We went over my history and the Lynch Syndrome issue. I have been cleared for a transplant, as far as they are willing to do it. Apparently I have been the talk of the conference room for a few weeks trying to decide if I was too high a risk to be a recipient! This could be a fun yet scary experience, being the first here to have a double lung transplant while also dealing with a high risk probability for cancer. After chatting we decided to proceed with the evaluation process. On September 12^th I will be admitted for my overnight stay and get a majority of the testing done. Some of the follow up tests like dental exams will obviously need to be done outside of the hospital. Luckily I don’t need pap smears or pregnancy tests though.

It was nice to get in and get things rolling. They are aware that I don’t feel I am in need of being listed as of right now but that I do want to start the ball so that if I get sick fast I am not struggling. They agree completely with my choice too.

Since I have officially started the transplant evaluation process, be sure to look for more updates and YouTube videos.