Life is grand.

I wanted to check in briefly while spirits were high just to let everyone out there know that I am living the good life. Been out a lot with all kinds of friends--ones I've had forever (like my best friend Dave who I've been best friends with since the 2nd grade) to my work crew at The Center (who I went out with tonight!) and all of them are amazing. I am really appreciating this wonderful life that I have gotten a 3rd chance to live at and savoring every moment.

I rarely take a moment to realize what I have been through, but gearing up to start some reflective writing and getting knee deep into this job search all over again, it really brings out the big stuff. I am a SUPERSTAR and there is nothing you can do about it!!! I have been through hell and back. TWICE. And I deserve the best. So the world better recognize that I am about to take it by storm. That's all I have to say about that.

(Stepping down from my cancer pedestal...) Well, that was fun. No but really, I am kind of thinking about writing a book. A children's book. The kind of cancer I have been dealing with effects mostly children, so I am going to do a little research and find out what's out there for kids with cancer and lend my incredible writing skills to the cause. I have been using my type-A personality traits to make some money helping high school seniors with their college applications. It's fun and it makes me feel young. This past weekend I celebrated my friend Katie Ford's 25th birthday and it made me feel grown up and old! She owns a house and is a real teacher! We grew up together. Very strange. I feel so behind in this life.

My support group has been a lot different without Pam and Cathy and Bill. It's like a big hole. I also miss Rachel...she is the 23-year-old sarcoma survivor that is pretty much an amazing person. She's my hero on MySpace. Anyway, I am starting to babble...hope everyone is enjoying their last few weeks of summer. SAVOR EVERY MOMENT!!!

Love,
Jason

Good MRI results/back from camp

I just got home from 5 weeks away working at Camp Taum Sauk, my second home in the Ozark foothills. It was amazing as always and I had a blast with the kids and the incredible staff. It was my second summer as a program director and I did the staff scheduling. It was a great job for me, kind of like putting together a puzzle each day with 30x7 pieces. I spent as much time as I could on the river doing canoe and tube floats and also spent a lot of time driving van trips to local hot spots and state parks. This was my 11th summer down there over the past 14 years. It's like one big family and it was the best possible place for me to finish my immediate recovery from treatment.

This past Monday I had my first post-treatment MRI and got the results Tuesday from Dr. Linette. The results were "good" according to the report and the doctors, but it wasn't the overwhelming kind of "GREAT" that I was hoping for. Dr. Linette seemed a little apprehensive. He said that in 3 months instead of doing another MRI, that we will do a PET scan, which I've had before. It can pinpoint metastasized activity and can be compared to the past PET I had 6 months ago that helped plan the course of my treatment. He said the best thing to do at this point is move on and that's what I plan to do. However, it still frightens and depresses me a great deal that the doctor seemed a little apprehensive about things being totally gone and gone for good. My next diagnostic procedure will be a bone marrow biopsy coming up in 3 weeks or so on day +100 from my transplant. This will give us a better idea if the intense chemo was able to kill all the cancer in my bone marrow which is really important. I am really hoping the results of that one are good.

Otherwise, I am preparing to move forward with my life after a summer of working recovery. Camp was excellent. I have been hanging out with camp staff friends all week and am returning to work at The Center this afternoon. It looks like I will be working 25 hours a week there for the next few months until I get a full-time job. I am planning on getting my resume revised a bit next week and starting the big search all over again. It's really deja vu from last fall. I was doing all this at the exact same time last year, looking for a job and then planning on looking for an apartment or condo. I really hope fate lets me move forward with everything this time around. I am doing everything I can to stay healthy--eating well and exercising and staying on top of my health, but it's nothing I didn't do before.

I should have plenty of time to check in more regularly as this summer winds down and the fall begins. Please continue to support me, as this journey is far from over!

Central line out

I am home on a quick respite from camp to get the central line catheter removed from my chest. I got it out this afternoon and it feels wonderful to be rid of this physical symbol of the cancer and transplant experience. It was relatively simple, not totally painless but SO worth the slight pain. It was in there for 6 months, so there was a lot of yanking that had to take place, but they numbed me up with a little Lidocane and pulled that sucker out. I've got a bandage on there now for the next 24 hours or so, then I am free to take it out and shower and just wear a bandaid until it scars up. Should be no time at all.

This has freed me from the constant worry of an infection and keeping this area dry and clean at all times, especially a hassle when showering. Now I can swim at camp which makes my job a lot easier and more fun. Camp is going well. My job is a lot more low key this year than last year, which I like and don't like at the same time. It's a huge adjustment of responsibilities and daily schedule, so that has been a little tough, but I still feel like I am making a reasonable contribution despite my limits. It is somewhat frustrating because I feel like people are hesitant to ask me to do things and about my capabilities and I feel so confident in whatever I take on that it creates a conflict. Then I surprise myself by struggling with something that I did last year so effortlessly. All in all, it's where I need to be right now and I am enjoying my time and role there. It's like one big family and the kids are worth it all.

Yesterday I received some sad news from my support group at The Wellness Community. Two women that I had become close with the past six months both died Monday and Tuesday due to complications from the treatment of their disease. Cathy was a grandmotherly figure to me, always sharp and I felt very close to her in group. She had been battling ovarian cancer for the past 4 years, almost constantly on chemotherapy. I have been anticipating her death for the past two weeks when she entered hospice care, but it still came as a shock and I am very upset. She was a retired teacher and still taught the medically disabled in their homes up until 2 months ago. Her husband Jack of 46 years, two daughters, Amy and Ann, a mentally disabled sister whom she cared for and several grandchildren survived her.

Pam had battled breast cancer for 5 years and it recently spread to her brain where she developed an inoperable tumor maybe 2 months ago. She had undergone a drastic treatment measure recently that involved the installation of a port/shunt in her head to deliver chemotherapy drugs directly to the brain. It was extremely dangerous. She had recently developed a blood clot and died likely from complications related to treatment. It just happened Monday and the information is still unclear because I think it was more sudden. Pam's husband Charlie and her two children, both college students, one bipolar and the other pregnant, survive her.

Like with most deaths I have experienced in my short life, I first was shocked and emotionless for a little while and then let loose and cried and thought about how unfair and tragic this was. I don't have the crutch of religious belief or a complete and solid idea of what the "afterlife" involves. I just can't really relate to that whole notion when it's so forced like these were. These women were killed. They lost the battle. They fought for the good fight for years and years, and lost to a horrible and debilitating disease that will affect 1 in 4 Americans in their lifetime. They were robbed of everything they had ahead of them and plucked from their normal healthy active lives, jobs and families and are gone forever.

It's just so frustrating and revealing about the lives we live. On one hand you want to treasure every moment and not worry about the possibilities of everything that could go tragically wrong, but the next you find yourself walking on eggshells and worrying about things that don't matter at all in the big scheme of things. I think about my own survival and what I face in the long life I plan to live. Just like so many of the feelings and thoughts that we have all experienced throughout this cancer, it just makes you think and face things that are really hard.

That being said, it's back to camp for me tomorrow morning. I am anxious to be back and I think it's best for me to be there right now. I am getting labs in a week and a half just to make sure things are continuing to go up but other than that I will check back with you later this summer.

Headed to camp

Well it's been about a month since I got out on June 6th and the transplant stay couldn't be further from my mind. I have been back to work at The Center and a bit at RPA this past week or two and I am leaving for camp tomorrow. I will be working there for the rest of the summer as a program co-director. I have been packing (and purging in the process) and my truck is filled to the brim with all kinds of junk for the next 5 weeks. I have a packing disease--tend to follow the "well I might need it" philosophy and just kind of throw everything in there. Oh well. I just can't wait to go.

The only lingering symptom from the transplant and high-dose chemotherapy is the compromised hearing. Doesn't seem to have improved at all and I am going to schedule an audiology appointment for when I get back in mid-August. My rash is pretty much gone...except for a little discoloration. No sign of any hair yet, but I can feel it gettin ready--maybe by the time I see my parents it will have started growing back in. My energy level really feels up, it's still not 100 percent of course, nowhere near probably, but I still feel like I can contribute at camp in a very meaningful way. Some gastrointestinal side effects I was having have cleared up with an antibiotic and a medication called Flagil which I will continue for a week's time.

Tomorrow I am going down to the treatment center first thing in the morning to get labs and a dressing change. No, my central line is still not out. It's frustrating but I have to remember that I have been speeding through this recovery process real fast. It's typical (esp. for me) for the platelet count to crawl up slowly after high-dose chemo like I had. Slower for some than others, but I just have a tiny bit to to go and then they can pull my line. I did not have to get a transfusion last week, so that is a first step in the right direction. Hopefully that will continue but it may not. I have made preliminary arrangements to get labs down near camp at a doctor's office and plan on coming back to get my catheter pulled as soon as my body is ready. It will be much easier living down there without it, but I am not willing to sit around and wait for my platelets to come up. It's not that far and I am ready to get down there and start working.

The only reason my plans would change is if my platelets are up tomorrow and they can either squeeze me in ideally to pull the central line sometime Monday or less ideally after the holiday this week. If they can, it is worth staying and not having to worry about it down at camp. Talk to everybody in August. Have a relaxing and productive summer.

a little restless

It's almost been a month since my transplant and I am feeling good. I've been quite restless all week, tired of not having a regular schedule and ready for a change of scenery. This makes me even more excited to get down to camp and forget about this life for a little while. I've been continuing to walk--I'm up to the equivalent of 3 miles now...but I've been varying my routine a bit, getting on the elliptical machine and doing some timed stuff because the track got boring. So, I've increased my exercise by mixing it up a little bit which is good. I've also been back to work at The Center. It felt good to earn some money but it was exhausting at the same time. I think I need to stick to shorter shifts more frequently, kind of like my eating--smaller meals more often. I think I might delay going back to work at RPA until I can be there more consistently after camp.

My grandma is here visiting from Brooklyn for 10 days and my uncle Ken is coming from San Diego for the last 5 right before the July 4th holiday. Shortly after they leave I will head down to camp. It's been really good to see my grandma--I think she benefits so much from seeing me doing well and being active. Granny is 83 and still healthy and active so I think this whole experience has been so difficult for her. It's been great to have her around spoiling me and the timing couldn't be better cause I have no money right now since I haven't been working in so long!

Most of my lingering symptoms from the high-dose chemotherapy and transplant have gone away. The only things really left is the decreased hearing and ringing in my ears. The nurse practitioner has said I can go ahead and see an audiologist to get an idea of what this problem is all about. I guess I need to follow up about that next week. No sign of any hair yet...still bald all over, but it will come.

This coming week I have my first visit back with my oncologist Dr. Linette and JoAnn, his coordinator. I really like them so I am excited to be back under their care. I will get labs on Wednesday morning to see if my platelets are up enough for me to get the catheter pulled...if so, that will happen Thursday. I really hope it is time, otherwise that could end up delaying me getting down to camp. I'm not going anywhere until it's gone. Other than that, I am working a bit this week and plan on enjoying time with the family visiting until the holiday weekend.

Until then, hope everybody is having a busy but relaxing summer.

ahh, summer.

I guess it's been about 9 or 10 days since I got out of the hospital but it really seems like a million years ago already. I tend to focus on all the things that haven't gotten better yet and aren't quite back to "normal" but in reality, sitting down to write this blog, I realize I have made tremendous progress in a very short period of time. I have not missed a day of walking 2 miles and I plan to bump that up to 3 miles a day next week. All of my symptoms have gotten a lot better although it is hard for me to tell on some things cause I am still living with them but my mom keeps my realistic.

The skin rash on my torso is still there--not really a rash anymore, but more of just dry flaky skin that is leftover. I'm still caking on the moisturizer and I think it's helping. It just needs a little more time (and patience!) and it should be gone in a week. The stickiness around my eyes has cleared up and my nose is running less. I had to get platelets again on Tuesday but hopefully those will start staying up on their own soon. My hearing is really not improving, but they said to give it another month and then we would look into seeing an audiologist and go from there. I am not too worried about it, it's not worth worrying about cause I can't do much about it. That's my philosophy with that, among other things. So symptomaticly, I am clearing up from the big transplant stay. I think the walking has really helped to get things moving.

I had my first follow-up visit with the nurse practitioner in the stem cell transplant division. I really like this guy, very professional and a great communicator--unlike my transplant physician who I have not heard of or seen in weeks, despite having just completed this major procedure. That's another story though. My follow-up went well. He answered a lot of my questions and told us why he couldn't answer some of the big ones. I was satisfied with his answers and left feeling really good about my progress and tolerance for all the harsh treatment that I have been through. He really brought me down to earth and reminded me that my body has been assaulted dramatically--that the progress I've made is remarkable and I should be proud and patient at the same time. The best news I received was that my catheter can come out very soon--as soon as next week. It just depends on when my platelets decide to stay up. The magic number is 50. My platelets have to get to 50 and then they can yank that sucker out. They scheduled it for Tuesday so here's for hoping, but realistically I don''t see it happening that soon. Once I do, I can swim in a pool and shower without the huge hassle of making a waterproof dressing for my chest. I am very excited to get rid of this physical symbol of cancer treatment and transplant. It will really be a weight off my shoulders.

I have really been enjoying my time off since the hospital stay. It really feels like summer around here with my brother home from school and my mom home from work. Besides walking, I have been going out to lunch a lot--my appetite is back, yes, but not my taste buds all the way. I have been spending a lot of time with friends and looking forward to my summer plans. I have decided since I am making such a fast recovery that I am going to start working (very) part-time at The Center and RPA next week. After a few weeks of that I plan to get back down to camp. Then when I get back in August, go back to working at The Center and RPA and wait for my hair to grow back and move on from there. It feels so good to be so forward-thinking. Not to be corny, but it honestly feels like I have the whole world in front of me. I can do whatever I want and there is no chemotherapy or cancer in the way to stop me. It sounds silly but that's the reality of it. I am finished with that phase of my life and moving on.

Recovery/readjusting

I've been meaning to sit down and write this for a while. I have now been out of the hospital for 4 days. Every day has been better than the last...steady improvement although sometimes it's hard to tell. I have seen a lot of friends and some family and talked to even more. Everybody is so congratulatory and relieved at the same time. It's an amazing feeling and I just feel really lucky and fortunate. I feel like I have been blessed with a gift for communicating and that has made this difficult process a little bit easier for everyone. Hang tight if it takes me a few days to return your email or phone call, I am tryin!

Tuesday I was in shock and just stayed around the house and laid in my bed just appreciating life. Wednesday I was still a little shocked and stayed in bed for hours. That morning I got platelets at the cancer center. I got up to eat and go to the bathroom but I left me stuff all over the place and just chilled. That night I walked my first 2 miles out of the hospital. I never missed a day! I went to The Center of Clayton (my gym) and did my 20 laps on the indoor track. My friend Jill met me at the gym and walked 15 of them with me. So nice. It really felt amazing and I hope not to miss a day during this recovery process. I want to build on what I am doing and I really think it will catapult me forward in this recovery journey. Thursday I had a big day. I woke up and put away all my stuff. Two huge suitcases full of stuff. It took me 3 hours and what I thought was all my energy. After that I showered for the first time since the hospital. It felt amazing. I cleaned off 3 weeks of hospital disgust. Then my friend Gavi and I went out to lunch with my other friends Caroline, Carol and Tiffany. I ate my whole lunch! That's a big deal for me. Then I went to the mall and to Northwest Coffee. I was ready for a nap. So then that night, I went for my walk at The Center. Got another 20 laps in. And today I went to the hospital to get my blood counts checked again early this morning. I didn't need any blood products which was good. My white count did go down though, which they said was normal and will start coming up soon.

As far as my symptoms go, I still got a bunch of stuff goin on. Rash is healing but is dry and itchy. Still can't taste much, but that is to be expected. I am tired, which is also normal, but am trying to take it easy this weekend. I am pale as a ghost so I am staying out of the sun. My hearing is still marginal--I am freaked out about it, but am trying to remain hopeful until a few more weeks go by. Today it seems like the hearing is trying to restore itself in my left ear. My right ear is really ringing. I have been keeping good records of my temp which has been normal and my fluids intake. 64 ounces every day! Otherwise I am feeling good, just a little exhausted. I can't wait to see where I am 2 weeks from Tuesday. Hopefully lots better.

Tonight I am going out to dinner with my family at Olympia and then going to walk my 2 miles at the gym.