Horizon

The last couple of months have been really stressful. Several of my work projects are all requiring a lot of attention right now. I am trying to iron out some details around MastAttack and make plans for the future. I live in the grey bleakness of New England in the midst of a record breaking winter. I am having some setbacks regarding GI function and pain.

And of course, I am having surgery soon. The amount of feelings I have about this surgery is surprising given the fact that I have always expected to have it. I don’t know. I guess it just seemed further off. The horizon seems so far away until you’re standing on the edge of the world, about to fall off.

Bowel surgery when you have mast cell disease is a complicated affair. I have to get buy in from all the relevant specialists and they all have to agree on a plan. I have to schedule surgery when everyone is in town and not taking vacation in the near future. I have to arrange care (nursing and otherwise) for weeks after I leave the hospital. I have to finish up several work things before they operate. I want to get some things lined up for MastAttack before I go.

My surgery was scheduled for April 28. I saw my surgeon this week to go over everything. He is not convinced that removing all of my colon is the best move. I am going to repeat some motility testing. Specialized testing generally takes weeks to get scheduled. Which would literally give us the results days before my scheduled surgery date, and that’s cutting it a little close for me.

I scheduled all my testing, then called my surgeon’s secretary. I rescheduled my surgery for mid-May. I am frustrated that there is still disagreement so close to my surgery date, but I understand why. We can’t just look and see what happened to the last twenty people like me who had their colons removed. There just isn’t anyone like me.

Part of why this whole production has been stressful is because I saw this coming a mile away. Needing my colon removed is not a surprise. We discussed removing more of my colon when I had my surgery in 2013 (I still have about 70% of my colon).   We weighed the pros and cons then, so I feel like having a similar conversation two years later shouldn’t generate so many questions. But things change, and my body has changed, and I have changed, as a person. What I want now is not the same as two years ago.

I thought pushing back the surgery would make me mad, but it really didn’t. It was a relief. I immediately felt calmer. It gives me time to make decisions without pressure. It gives me time to take some time for myself and focus on the things I care about.

If the amount of messages I have received are any indication, the weight of my life in recent months has been apparent to my readers. You guys are fantastic. You are so sweet and kind and respectful of my time and my feelings. I really feel so privileged to be part of this thing we are all doing together.

It has not escaped notice that MastAttack is turning into a much larger undertaking than I could ever have anticipated. I think some people are worried that I write these posts and answer questions out of a sense of obligation. A few weeks ago, I took a week off from the blog. I didn’t research or write anything about mast cell disease.

But at the end of the week, all I wanted to do was write posts about mast cells and diabetes. Not because I felt like people would be upset if I didn’t. Because I wanted to write it in case it was helpful. And because I like doing this.

In the last few months, this amazing thing has been happening. I am getting questions from people that are very nuanced, that show a really good understanding of the biology involved. Some of these questions are coming from people who have progressed a long way in their understanding of this disease. They are questioning me and bringing up findings from papers I haven’t read or correcting me when I get sloppy with the details. It is so cool. We are getting somewhere. This is getting to be bigger than me. And that was always the point.

I’m going to tell you guys a secret. I don’t want to be doing this in ten years. I don’t want to be writing articles or posts or reading literature constantly. In ten years, I want all this information to be available in a concise, easy to digest form for anyone to use. I want so many people to know everything that I know that I become obsolete. It’s starting, and you’re all part of that.

Along those lines, it’s time for me to get some help with all of this. I’m taking some people up on offers to help out, and will be asking for help with specific tasks in the upcoming months. If you think you might want to help, feel free to message me on FB or send me an email. There will be more details in future posts.

As for me, I’m feeling decidedly less stressed than I have in a while. All of my work stuff will either get done or it won’t, and all of my blog stuff will either get done or it won’t.   I’ll have surgery and I think it will help. And if it doesn’t, it doesn’t. The risk of ending up with a permanent ileostomy is scary, but not trying to remove a huge source of inflammation and live without an ostomy is scarier. You can’t be afraid to try.

In the meantime, I’m taking some time to relax before this next stage of my life begins. I’m going to Florida to visit a dear friend (and Disney!) later this week. The week I was supposed to have surgery, I will be going to California to visit Team Addie, my mastsister Addison and her family. And deciding to do those things felt warm and peaceful. It is exactly the right medicine for this weariness.

So I guess what I’m trying to say is that I appreciate all of your support. And I appreciate all of you individually more than you know. Every time I see someone jump in with the right answer or a message of support, I am honored to be part of this. And I’m so thankful and touched by your messages of concern and support. It’s nice to have people to catch you once in a while.

Sometimes things are hard, but everything’s gonna be okay. Okay, or better. It’s like my guarantee.