Wednesday, August 29, 2012

SUP

Think I'll be going stand up paddle boarding again on Sept 8. Might try the ocean this time. Which means, I'll be getting wet.

Brainstorm

Treatment yesterday, so insomnia last night. Rage isn't too bad today. But at 3 am I had a brainstorm reagrding my future advoacy work. Stay tuned.

Friday, August 24, 2012

F Yeah, It's Friday

Friday.  I've worked all day, every day this whole week. That's yet another first since starting the myeloma challenge 16 months ago.  I'm feeling pretty good. Blood count is up, energy is up, and so on and so on.   Via twitter (perhaps the greatest thing ever) I've been "connecting" with other myeloma patients from all over the place. It's interesting to see how other people are dealing with the treatment and mental challenges. What's most interesting, given my current mental state (very happy on the scale of happiness, but trying to figure out the future weighed against myeloma), is that other people experience the same sort of feelings and have the same questions.  I suppose it's this way for anyone with a serious chronic illness. You have to do your very best in blocking out the "what ifs" and negative thoughts. There are times that I'd like to crawl into a cave and isolate myself from everyone. But that's not the way to do this. So as of right now, I've got good things ahead...a marriage, a trip to vegas, a happy dog, a bike planning conference, and so on and so on.

Next week, it's back to chemo for a maitenance session. It's very short...not even enough time to watch a whole movie. Last time at Phan's, we borrowed the dvd for Dark Knight so we could finish at home.  Next week is also my complete, monthly lab work. Then on Sept 5, it's back to Berenson for the monthly check up.

Wednesday, August 22, 2012

Who Am I

Pretty quiet week on the myeloma front. No shots, no appointments, no lab work.
Most recent blood work shows my white & red blood cell counts going up....both are in the almost normal range. Creatinin is at 4.9. High for a normal person, but good for me. NORMAL person.

This brings me to my question. Who am I? Since my diagnosis, I've changed. Everything has changed. Relationships, work, love, my dog, exercise, relaxing.....how I view all these things is forever different. One of things we talk about with Erin, my cancer coach, is that I don't want my identity to be that I am a cancer patient. I want to be Matt. But it's impossible to not see myself forever as a cancer patient. I suppose the fact that I'll always be doing treatment...maintenance or more intense....has something to do with my self view. Myeloma never really goes away. It's always lurking.  But also, it's the fact that mentally, myeloma is always there. Everything I do is measured against what it means for my myeloma. And this is what doctors and nurses can't tell you. I wish there was some sort of guide book. I've been to support groups, but those are just bitch sessions more than anything else, and I didn't leave them feeling rejuvenated.

So really I can't avoid seeing myself as a cancer patient. But I can also be Matt. I get Erin's point about not letting the myeloma dictate who I am or what I do. I can be me, but I can also use my life changing experience to be a better me. I.e. do something with what I've learned. Part of me feels,like I need to get more involved in advocacy. I'm lucky, I've got a great team who can help me through this. But what about those who don't. Erin is a cancer survivor. She rarely talks about her cancer yet is able to help guide other patients through the mental. On a side nite, she'll be marrying me and Leslie.

What's my point? I don't know. Just rambling, it's 3 am and I'm awake. I'm torn on the whole Fuck Cancer movement. Yes fuck cancer. But are we giving it too much power by telling it to fuck itself. Prhaps it should be Turn your Head From Cancer.

Sunday, August 19, 2012

Emotional Day

Yesterday, I went to a birthday bbq for Steve's grandma. Steve, as you know, is a fellow patient at Dr. Phan's office. He is the first person I met when I started chemo. His grandma is usually with him.  She turned 83 yesterday and is in amazing shape. She and Steve are the nicest people. Steve, though, isn't doing so well.  But he's still fighting. I felt a little sheepish that I'm doing well and we basically started treatment around the same time.  Sheepish is just one emotion of the day. It was a sad, beautiful, touching day. The bbq started with a  couple of prayers, in both Spanish and English. Steve gave me a couple of crosses, for me and Leslie. A beautiful gift. A couple of nurses from one of the local hospitals were there. I know them as well, and it was great to see them. And there were a lot of family members there. The birthday was for grandma, but the party was also for Steve....almost seemed like they were all there to spend time with him, in case it was the last time they'd have a chance. Very sad. But it was also an amazing day, to see him being brave and real. He knows what is going on. He actually had a brief hospital visit yesterday morning.  And that was my day, a reminder of the seriousness of this, but also a great insight into the human spirit and strength and love.

Wednesday, August 15, 2012

more blood work friday

Let's all send positive thoughts and vibes and energy prayers to get more improvements with the numbers. We want creatinin at 4.5 and red blood count over 12.

Leslie

morning everyone,

as I mentioned in the last post, Leslie and I are getting married.  A friend reminded me today that Leslie has really been there for me during this whole journey.   I hadn't forgotten it, but a little reminder is always good. She's been amazing this past year and half, and truly I never really understood how much I need someone that cares & loves me, and who I can trust and count on and lean on. She's been that person. Part of me, saw myself as a lone wolf, not needing anyone or anything. But that's not the case.  Yes, I still like my Matt time, but not all the time.

We told Dr Phan and the nurses yesterday about the marriage. They all thought we were already married (maybe because we told them we were).  But they were all very happy with the news.  The doctor and nurses are definitely part of the team and part of the family.  One of these nurses is leaving this week. She got a job at Cedars Sinai. Something she couldn't pass up.  I feel almost like a parent with one of their kids leaving home.  I'm proud and happy for her, but also a little sad.

Saturday is a birthday party for Steve's grandma, who we have met at Phan's office many times.  I was invited and plan to be there.  File it under: friends you never expected to have, but do.

Monday, August 13, 2012

quick update

Howdy all,  Back to maintenance chemo this week. No big deal. Did blood work friday and white & red blood counts are going up, as good as they've been in long time.  Creatinin back down to 5.0.  All after one cycle of maitenance. Whew!!!!

Side note and just as exctiing, actually more exciting. Leslie and I got married this past Friday. We'll be doing a celebration in September, but we did the couthouse marriage the other day.  One of the few good things to come from myeloma is that we became closer than ever. I don't think I'd be where I am now, without her support.

Sunday, August 5, 2012

thumbs up...everything is stable

Saw Berenson Friday. Wrapped up one cycle of maintenance. Everything looks good. Some numbers even went down. Dr B was real happy, and said that it's a good sign that maintenance is going to work for me. good deal.

went for bike ride today. even rode a hill that I've been avoiding. I made it. Super slow, but made it.   Also mowed my own lawn today, something I really haven't been able to do given low white blood count.  But now that I'm on maintenance and off treanda, my bone marrow is bouncing back, meaning white cell count is going up.

Wednesday, August 1, 2012

Latest Labs

Just wrapped up my first cycle of maintenance. Preliminary labs show things holding steady, which is what we want. Keeping me where I'm at is the goal. Chemo yesterday, so I've got steroid induced insomnia.
I've dropped about 10 pounds since our Charlotte/Columbus trip. Another 15 to go.