Its officially fall, and although we did get an extended summer well into October, I miss the pool already. The pool was my peaceful place all summer when I could use it. I have a lot of need for peace these days and I'm having trouble finding it.
I'm still here. I guess whatever else is going on that's the most important thing.
What IS going on? I suppose the biggest thing is that I stopped the chemo treatments I was on (the intravenous ones) and switched to a pill called Lonsurf, which is literally known as "The Last Resort", because the Dr said the other treatment was no longer working.
I had 2 options for that route and I've run through both. Now I have probably run through the Lonsurf pill as well.
I started taking it in August, and after reading about it I was very anxious about the side effects, but after the first round (2 weeks on the pill and 2 weeks off is the schedule), I thought wow, this is actually OK! Then round 2 came and things started to change. I was getting weak to the point that I didn't want to get out of bed, and when I did I would struggle for breath and the energy to just get across the floor. Fast forward to the week after the beach and I was miserable to the point that I really thought I was dying.
I ended up in the ICC where they told me I had a very low hemoglobin level and that made me anemic which explained the extreme fatigue. I was advised to stop taking it by my palliative Dr ( my oncologist is absent for most of this and is zero help) so I did, and as of now I've been off of it for 3 weeks. I've slowly gotten better with the fatigue but its still pretty bad. I had a conversation with my oncologist today..a very frustrating one...and both Elise and I came away from it with a great big WTF.
I thought I had been submitted for a trial 2 months ago but evidently because I started taking the pill he didn't do it. He also didn't explain that to me so all this time I've been thinking that I am on some list somewhere when in fact I've NEVER been submitted for ANY trials so far. I hate my Dr. He is not a good communicator at all. It also makes no sense to not submit me for a trial just because I'm on a treatment when it can take months for you to get on a trial as it is, and I can always stop taking the treatment if they need me to. Alex has been up for trials this whole time while on treatment so I just don't get it.
I had a wonderful beach trip after round 2 though, and I was pretty weak during the whole thing but honestly I thought that it was just the cancer because Id been off the pill for over a week and didn't realize that the side effects can / do last for weeks, some even months, after you stop taking them.
The beach trip - WONDERFUL but also sad. I had to have a lot of help, including Meri Pyle driving me both ways. Let me start from the beginning about this trip, because its one I really want to be remembered.
Its started out with me having a plan to go see Alex and Scott at the end of September. AS it ot closer to that date, I started thinking that I was likely going to need someone to drive with me, so I asked Anne if she could go. That had to included Vic of course, so now I needed to find a place to stay other than Alex's house. They have a great little apartment but its a one bedroom and very small so it was just not going to work to stay there. So I started to look at houses nearby. I tried to find something for just the 3 of use but there just wasn't anything.
The more I looked the more I was thinking, If I'm going to do this I want it to be like it used to be. A big house on the beach with a pool. After searching and searching I finally found a place that was perfect, but was also HUGE and expensive. 10K to be precise. There were 9 bedrooms to fill up so of course the first person I asked to come was Elise. She couldn't be there the whole time on the week that Id picked but I still wanted her to be there so she agreed. Then I asked Tiffany, and she told me she and Alex would be in Germany that week. Katie and Chi were already going to the beach a week or so after that so I knew they couldn't go either. So I took a chance and asked Meri Pyle if she would come and she said yes right away. I was anxious about it because Id never really spent that much time with her, and certainly not under these circumstances, but I figured that worst case scenario shed have her own room and do her own thing. I also asked Marisa and Marcus. They said yes also but couldn't stay the whole time either. No matter, I wanted them to come.
I also asked Andy. He could come but Jason couldn't. Then last minute (a few weeks before the trip) I asked Jennifer and Julie. Julie couldn't but Jennifer said she would try to work it out even though she had another beach trip literally the week before. She came though, and Anne did too. They both had to work the whole time during the day but it was still great having them there. It was definitely NOT the same as I didn't get any real time with Anne as I had hoped. I wanted to have alone time with her and it never happened.
Melody ( Mel), Elises funny friend came with her so that rounded out the people in the bedrooms.
The house worked out great. It was a mile from Alex and Scott and each floor had its own den and kitchen area so no matter what, noone was forced to be on top of each other. The weather was PERFECT and the water was calm every day. It was wonderful. Beautiful. I left there thinking it might be the last time I see this ocean, and it may be, but I hope not.
I was weak the whole time as I said, and everyone did everything for me. I barely had to move which I hated but also appreciated because it was necessary unfortunately.
The whole week was great except for a couple of tense moments with Andy that are still unresolved but I don't know how to approach him about it. It has to do with him and Jason and that's all I'll say here except that I hope they are OK and that whatever hiccups they are having get resolved.
Another confusing thing (that I didn't think was actually confusing at the time) was the road trip time with Meri. We collectively had 11 hours back and forth to talk about whatever and we did talk about a LOT of things. Holly was a major subject and the general consensus was that neither of us understood why she was / is acting the way she is towards me. Behind my back and just in general. In all that time however, nothing was mentioned to me about me talking to her about taking over the state representative position. You see right before we left I asked her if she wanted to do it. She said yes, but not by herself. So I asked Lisa first if she wanted to be co-rep but she wasn't sure she could commit so I asked Tiffany and she actually said yes.
I went back to Meri with this information and in a few days she got back to me saying that she didn't want to share the position, which was fine, so I told Tiffany just that. Well, evidently AT THE BEACH she had a conversation with Marisa saying that she was hurt that I "forgot her" regarding the state rep change.
When Marisa told me that I started to pull up texts because the first conversation I had with Meri about this was in May. I wasn't ready to give it up yet then, but by September I was feeling so bad (the pill) that I thought it was just time. (I also asked Tiffany to take over Belles...another conversation)
All I could think about was that this person that I really thought Id bonded with was false. Why, in all that time, did she not bring that up to me? I'll tell you why. Because it didn't happen that way and she knows it. Did she forget that I asked her about it in May? Or maybe she didnt think Id go ask others to help so quickly? I don't know, but it seems to me that her bringing that up to Marisa on the same beach trip that Im on and saying nothing about it to me is just not right. She also told me that she wanted to keep the championships close to home so I could come, and not 2 days after returning home I find out she's considering having it 2 hours away. In fairness, when she said that I told her not to take me into consideration because I wasn't going to qualify, but still. I have ZERO say in it anymore.
The thing is, its all such bad drama and I don't want any part of it. I had to just tell myself that Id givin it up and that was that. I just didn't expect to be completely left out I guess. Not surprising though.
I want to say something to Meri about it but Marisa asked me not to, so I'm at a wall I cant get over with her now and I no longer trust her at all. I'm starting to not trust Marisa as well which is so disappointing.
This past weekend was halloween and Katie had a party at their house. I dressed up and went. Holly was there of course and were always nice to each other in public. I had to sit down most of the time and my choices of where to sit were limited, but I started to notice Marisa was wherever Holly was. Right next to her. Call me paranoid but I think they are really buddies and I'm just unaware of it. So did Marisa go back to Holly with the things I said? Or better yet, did MERI say anything to her? My guess is she did, and it was likely not the same tone she had with me about things. Fortunately I never said anything bad about her, it was more about just not understanding where her need to squeeze me out is coming from. Was that what she conveyed to Holly though? Probably not.
I guess it no longer matters because I'm just someone who shows up to play now. Its a weird feeling and a lonely one too. I've even volunteered to post stuff for Tiffany or to sub in as TD if she cant and she says Katie will do it so I'm completely out.
Wes has not been treating me the same all year. I had to give up the Saturday tournament too and so now that means I'm no longer doing anything to contribute to Melt Yard stuff. I keep waiting for Wes to tell me to give the keys back, or to give them to Tiffany because I told him she needed a set and he still hasn't given her one. If he does I will be upset. I rarely go into Melt Yard anymore except on Belles night and I always pay for my games in a tournament. We will see what happens.
I might try to keep making trophies for Saturday although there is one in 2 weeks and I have zero interest in coming up with something. I don't know, I guess I feel like I have not been part of the group since I came back to it in January. Hollys poison in Wes' ear has not helped. If it weren't for the cancer I am thinking my friendships would have changed dramatically by now which just tells me they were never really my friends to begin with.
I have to keep moving on though and I want to shed negative things. I worry too much about so many things already. I don't need to be sweating out who is my real friend. It stinks because it feels like I've been thrown out in some way, even by Tiffany who I DO think is my real friend, even if she likes Holly. I can't blame people for liking her when they have never been on the other side of things with her, and I am not going to gossip about her to people in order to get them to not like her anymore. That's very 7th grade and I want no part of it, even if it's exactly what is being done to me.
I know my time on this earth, save a miracle, is limited, and I don't want to spend the rest of it in anguish over a popularity contest that I will never win. I had a brief time where I felt the acceptance and respect of those around me so at least I know what that feels like. I have spent my entire life fighting this popularity machine to no avail, and with the pinball stuff it just kind of fell in my lap. I barely even knew it was there until it was already fading away from me. Now its gone and I have to find happiness in my day to day life which is not easy under the circumstances, but I have to try.
I need a new purpose. I don't know what that's going to be other than trying to save my own life, which quite frankly is just exhausting and unfortunately not very rewarding. I need something that makes me happy outside of the horror of my disease and treatments. That used to be pinball. I don't think it is anymore, or maybe it's just changed and I need to find my way in this new chapter of it.
I leave this post with hope again. Hope for finding my way in treatment as well as in my new role as "just another player" in the world of pinball.
