May 2, 2011

Well I’m coming up on my move date. Alex was in town last week and we got all my stuff packed up. I didn’t have all that much, so that was good. Everything was neatly put in boxes. This week my Mom came down to visit and we took a couple of car loads of boxes down to Columbia. All the remains now are the things I need for the next few days and the larger items that couldn’t fit in the car. It’s stressful having so much to get done. I have all the arrangements made, and the move on Saturday shouldn’t take too long. But I don’t like the uncertainty and waiting to implement my plan. All I want to do is rest, recover, and feel like imm settled and have some breathing room. Right now I don’t feel like I have that.

Fair warning…I want to rant right now. And I was going to, but the news of bin Laden’s taking a couple of 5.56 rounds to the head kind of made me feel a bit better. But there might be one coming soon.


April 20, 2011

So I mentioned this last week, but I WENT TO OMG (said in a teasing tone) in NY over the weekend. It was one of the best things I’ve done in a long time. OMG is a conference that brings YAs with cancer and their caregivers together to discuss common issues, learn, advocate, and network. I met some great YAs and got great information that helped explain some of what I’ve been through and where I’m at in my survivorship.

I flew up to NY on Friday and Nate picked me up at the airport. First, JFK sucks. It’s big, crowded, and the terminals don’t connect, so if your terminal is lame, like mine was, there isn’t shit to do. But getting picked up wasn’t a problem. Nate had a Zip car and met me. We then took a tour of NY by taking the Triboro Bridge into Harlem and driving most of Manhattan. We stopped off at Columbia, so I could see the main quad. It was a surprisingly open campus considering that it’s in the middle of Harlem. Well sort of. We got to his apartment in Soho after about 2 hours of city driving. We probably only covered 15 miles total, but it was cool seeing the city and hearing some of histories about NY and getting some history of the city. We then hung out for a bit and went to dinner at Lonbardi’s Pizza. It claims to be the first pizza place in America. I think it’s simply an advertising ploy to attract customers. Yea the place is old, but I don’t think it’s the first. The pizza, however, was the best I’ve ever had. I think the fresh basil made all the difference. After dinner we went to a bar called Professor Tom’s, which is a safe place for Boston fans. We had a few beers and watched the Red Sox lose to the Blue Jays. They made a 7th inning comeback, but ended up 1 run short. We then went to home, I think. I don’t remember, not because I had too much to drink, but because I was so tired. We went home and I went to bed.

On Saturday I got up and went to the conference. It was held on 18th St. I took the subway from Nate’s place to the conference. There were about 400 people there. Nearly everyone was between 18 and mid 30s. They served us breakfast then the conference began at 10. There were some brief opening remarks, and the key note speaker was Dr. Jonathan Lapook, who is the medical correspondent for the CBS nightly news. He was relatively candid in how little he knew about YA cancer prior to agreeing to come speak. After his remarks we had the breakout sessions. I went to a session on families and parenting, survivorship, and patient navigation. By far the most helpful were the survivorship and navigation sessions. There were short breaks between each session and we had a break for lunch. During the breaks I was able to meet some great folks. When the sessions were done, there was a games session to help introduce more people to each other. Then closing remarks and we left for dinner. There was a booze cruise for everyone, but I chose not to attend. I wanted to spend more time with Nate, and he wanted to go to an Italian place called Frank. We went to Frank and it was excellent. It was tiny though. The bar area was about 20 feet wide and the restaurant wasn’t much bigger. The food was great though. We met one of Nate’s friends there. After that we went to a couple of bars, and were home by 12. I felt sort of bad not being able to go out hard. Everyone was really understanding and accommodating.

My flight was at 3 on Sunday, but to build in enough time to get to the airport and make it through security I wouldn’t have been able to stay for more than an hour at the conference’s Sunday session. I skipped it and spent the morning with Nate. We went to Kat’s Deli, which is where part of When Harry met Sally was filmed. I’ve had some good deli sandwiches in my life, but this one was amazing. They do all their own meats in house. I had a sandwich which is called the Ranger special. It was corned beef, brisket, and pastrami with slaw on rye. We then made our way to the airport.

The flight out was a disaster. The weather was awful on Saturday. Cold and rainy with violent thunderstorms that night, so I guess a bunch of flights had been cancelled. It took over an hour to get through security because the TSA only had one security lane open. I understand that you have to work with the staffing you have, but this was completely unacceptable. On top of that you have to pretty much strip naked to get though security. They were blaming the long line on people not being ready to go through the screening, but that’s a load of BS. People only have so many hands to carry all the shit they have you take off to get screened. They we’re understaffed and moving slow. So long story short, I missed my flight. I was able to get a stand by seat on a flight that left at 7 but you’d think I had asked the ticket agent to fly me to the moon. So I got back about 9.

This is my last full week at work, so I’ve been wrapping everything up and getting ready to go back out. More on that in another post.

April 14, 2011

I know it’s been about two weeks since I last updated. I’ve been trying to finish up some cases at work and getting ready to go out. I’ve made peace for the most part with going back out on disability. It’s necessary in order to recover fully and go back to work and do it right.

I’ve had my ups and downs over the last couple of weeks. I didn’t get to see Fipp last weekend. She had to work all day Saturday and then on Sunday she had to leave for a conference in Atlanta. I’m not going to get to see her this weekend either. I’m going to New York for the OMG 2011 cancer conference. OMG is an annual gathering of Young Adults to network and discuss cancer related challenges. It’s put on by i2Y, which if you’ve been keeping up with me for the last few months, is the largest young adult advocacy and support group in the country. It’s something which I want to get more involved with. Going to the conference will help, but also being out and a little better rested I’ll allow me to devote some time to being more involved.

When I’m in NY, I’ll be staying with Nate. It will be great to see him. I haven’t seen him since the wedding and we don’t get to see each other nearly as often as I’d like. Hopefully NY won’t be too cold. It’s been so nice here since the end of February, I shudder to think of willingly leaving for a colder place.

I’m also planning Tom’s bachelor party. We’re going to go to Atlantic City. I don’t know too much AC, but I imagine there will be some gambling and maybe some fishing or golf. If any of y’all know about AC please feel free to give some suggestions.

On the health front, my counts have been holding steady, but they’re down overall for the year. I think that is due in part to how tired I am and the fact I didn’t take enough time for a complete recovery. I’ve been having alot of lower back pain and pain in my joints. Part of it is caused by the steroids I’m on. I think the back pain is from the bone marrow biopsies. Most of it might be in my head though. I’ve spoken with some other people and they’ve said they have had pain from bone marrow biopsies for a long time afterwords.

April 4, 2011

It’s official. I’m going back out on disability effective April 22. I have mixed feelings about it. But everyone I know seems to be in agreement that it’s for the best. My plan is to move back to Columbia and recover with Alex. I have to have help around the house still, so it makes sense to go back to Columbia and make this marriage thing real. I’m confident that I’ll get through this and with some more time, I’ll be in a good place physically, mentally, and emotionally.

I was in Columbia this weekend. Some friends were having a wedding shower. We went to that, but didn’t do anything else. I was just too wiped out to really do much. Today I went to the doctor for a check up. I’ve had a cough and been a bit stuffy for a while. It doesn’t appear that I have a sinus infection, but I’ll get a chest x-ray and sinus CT scan to be on the safe side. I might need to have a minor surgery done to open up my nasal passages, but that’s a decision and a post for later. I don’t really have anything else to write about today. It was a rough day. I felt really down all day. I’m not really sure why. Each day is up or down. For a lot of YAs with cancer, depression is relatively common and post treatment readjustment issues are common for transplant recipients, so I’m kind of getting hit twice. I’m working with my counselor to unpack all of those issues, but it’s going to be a long road.

March 28, 2011

Wow. It’s been way too long since I’ve given everyone an update. I’d apologize, but at this point is it really necessary? I’m not going to bother trying to recap the last few months. Let’s just say they’ve been busy. Much busier than I anticipated when I returned to work. It’s taken quite a toll on my energy, ability to care for my self, and mental wellness.

So, I felt good when I was going back to work. My energy was good, I was working out, and I felt like I could take on the world. I was able to workout for a few weeks after starting back at work. But starting in mid January, I began to feel really tired during the week. I didn’t realize it at the time, but I was also feeling really lonely and depressed. On the weekends, I felt like I was recovering my energy a bit. And the early part of the week was a little better. But by Wednesday, I was beginning to feel tired at work and having trouble concentrating. And by Friday I was wiped out. It’s gotten progressively worse since then. Now it’s at the point where I’m exhausted all weekend and all week. I don’t feel at all reenergized after weekends. I need more time to rest and recuperate and rebuild my strength and endurance. I haven’t been to the gym in weeks. Cooking is almost too much. My apartment is a wreck because I’m just too tired to clean, restock anything but food, organize my papers, and even put away my laundry. Going back out on disability is a real possibility right now. I think I went back to work too early. I need space to breathe, rest, and more time to recover. I only spent about 6 months recovering after last year’s events. More recovery was needed, but I didn’t know that at the time.

I’ve also started seeing an oncology counselor. I was feeling so depressed. I felt like I was trapped and confined by something. I felt so overwhelmed. I was having a lot of nightmares and bad dreams. I was feeling really paranoid too. This isn’t me, even though I’m a bit of a pessimist by nature. I think I was finally beginning to realize and deal with everything I had been through over the past two years and more so, in my life. It’s been helpful having someone to work through these problems with. I also started an antidepressant. I went back and forth on whether I wanted to take it, but everyone around me was saying it would be helpful in picking myself back up. I still feel depressed. I think there’s a lot of work that I have to do before I sort of put myself back together again.

I’m trying to rebuild my life. I’ve lost a sense of myself. It’s helpful to be able to work that part out too.