Wednesday, February 29, 2012

Yay! Initial Travel

Very excited! Going to Tucson on March 17 to visit John & Doreen.  Just going for 2 days and one night. Baby steps. I am flying and will visit, kick back and enjoy the desert & pool.  Ready to see J & D, ready to travel, ready to do stuff.  The timing is perfect. I'll be at end of 2 week break in chemo, so I'll be feeling top notch. I'll have seen Berenson on the 16th, with hopefully the results being more good news. And this trip will lead to other trips and outings.

At work today, chemo yesterday (there was another new patient at Phan's office), more chemo Friday. Next week it's back to acupuncture plus a Zoller, shot caller, appointment re kidneys.

Saturday, February 25, 2012

Bike Ride

Rode to the lab today. About five miles each way. Legs were tired, but no problem getting air and breathing. That's a good sign, means my blood is moving oxygen around my body. Yay!

Time Flies

Another week is over. Week 1 of the latest chemo cycle. Time really goes by quick. I had a good week at work. I'm typically staying till about 2:30 now, which is real good. Making sure not to push it too much. But if you all remember, a few months back, there were days that I barely made it to 9:30 and I'd be utterly wiped out. Today I need to do blood work, and I think I'll ride my bike to the lab. I'm heavier now than when I first was diagnosed. It's a good sign that I am gaining weight, but I feel like a blob. I've got to get more active.

At chemo today, I watched Bucket List. I never wanted to before, just felt like it hit too close to home. But it was real good, different than I imagined, and reminded me that every day is a gift. Between my 44th and 45th, (5years ago), I made a 45 by 45 list. 45 things I wanted to accomplish during that year between 44 and 45. It was me traveling, reading, and trying new things. No jumping out of a plane though. When I was kid I wanted to, but as a chicken adult....heck no.

50/50 is another cancer movie I haven't wanted to see. Again, it hits too close to home.
But maybe I'm ready for it now, perhaps there is a message to be gleaned from it.

I want to mention a couple of other things. Congratulations to my nieces Destiny and Jacquie. Destiny has now passed all four of her required CPA exams. She is the real deal, and that's a huge deal. Jacquie is starring in the Wonderful Marvelettes (duh I mean the Marvelous Wonderettes) in Columbus Ohio and is "unexpectedly funny" they say. Suffice it to say, I'm a very proud uncle.

A couple of pieces of downer news, a friend of Leslie and me was diagnosed recently with cancer and is soon having surgery and starting chemo. She has spent many years working in the port area, which furthers my growing theory that it is a hugely unhealthy environment. That's 3 cancer cases in one year. I don't know, seems like a lot. Leslie went with the friend to the doctor the other day to provide moral support. It's some scary shit, and I am impressed with Leslie's ability to be there for people. And of course, my well wishes and thoughts go to our friend. She's got a journey ahead of her, but she can do it.

Lastly, my thoughts are with my step-sister, Rhona, who's husband, Herb, passed away a couple of weeks ago. Herb was a great and unique individual. He asked lots of questions and was a non stop walker. I visited Herb and Rhona in rural Pennsylvania several years ago and he took me for a walk. I was fricking exhausted, I think we crossed into 3 or 4 other states. He just kept going and going. He'll be missed.

And that's my report for now. Doing some travel planning this weekend. Time for us to get out of town and visit some folks.

Tuesday, February 21, 2012


Remember that lessen I learned about my weekly numbers and not being obsessed or panicky over little change? Well, that still applies, however today my creatinin is down to 5.53. That is excellent. The lowest it has been in ages. And a reflection of kidneys improving and cancer related protein releasing its grip on the kidneys. Yes!

Monday, February 20, 2012

Numbers, paranoia, and feeling good

Every Monday I do lab work and then it becomes a waiting game for the results.  For the past few months, it's been fine, I get the numbers and there is improvement and I'm happy.  Last week was different.  Some of my numbers were up a little bit. So despite me feeling really good, I was worried all week that my chemo was becoming less effective and the cancer was strengthening. Paranoia. It made for a tough mental week last week. We saw Berenson on Friday and he said not to worry, that we're still doing good. Some of other numbers are good and everything is fine.  That was a relief. On the down side, he did say it was too soon to start thinking about winding down with chemo. So my goal of being done with it in a couple of months, is unlikely to come to fruition.

The lessen here is that I can't get hung up on weekly numbers. It'll drive me nuts. We're concerned about trends. Also this weekend, I went to my first myeloma support group. It was actually helpful. Everyone was older than me and all were doing good. Most everyone has had myeloma ranging from 5 years to over 10 years.  All had occassional energy issues and recurring side effects from meds or the cancer. But all were happy to be alive and had great attitudes. For me, it was good to hear, but also a bit of a bummer....good to see people doing well, but a bummer in that clearly this is something that I'll always be dealing with and impacted by.  The message from everyone in the group was to not fret over weekly numbers and to stay focused on the future and doing what makes you happy. Good words.

So I'm trying to adopt that philosophy. As I said I feel good. Still get tired, still popping a lot of pills every day.  Today is lab work and I have to stop by Phan's office for a quick shot. Tomorrow it's back to chemo.

Tuesday, February 14, 2012

F U creatinin

Remember back a few posts to 5.94? It was the first time in many many months that my creatinin fell below 6. It's a reflection of kidney function and a reflection of the cancer's impact on the kidneys. Clearly the cancer is getting better, but the creatinin is hovering in the low 6s. Our goal is to have that number down to 2 or 3. 5.94 was exciting because if we can get it down below 5, that means I'd be out of the kidney failure category and into the damaged category. A declining number also means my kidneys aren't permanently damaged. The kidney aspect of myeloma scares me more than the cancer. I do not want to do dialysis and I am really ready to eat some normal food.

I've been feeling great. Energy up, attitude positive. I haven't had that much to blog about. I was even thinking I might expand the topics to non cancer items. That's a reflection of how cancer doesn't dominate my thoughts. That's a good thing. For instance, did you know that Randy Moss says he wants to play next season. That's very exciting. He's one of favorite players ever and really made the Vikings exciting.

And that is why I say fuck you creatinin. I did my weekly blood work yesterday. Creatinin was 6.28. Not bad and way better than it was months ago. But it's not lower, and that fact gets into my head and pops my feeling good bubble. I like numbers but I don't like 6.28. Leslie reassured me it's no big deal that we're doing great. True. It's going to take some time to get kidneys working right, but we're headed in the right direction. I agree with that BUT I am fixated on the number not going down and that's a mood changer. Hate it.

Monday, February 13, 2012


It's Monday. It's another week with no chemo.  Back at work today. I had to stop at the lab on the way a precursor to meeting with Berenson on Friday.  I felt really good this weekend and I'm imaging some good results on the lab work.

Thursday, February 9, 2012

Gray Area

Hey folks, not a whole lot to report. I'm on a break from chemo and been working this week. I have been doing acupuncture.  And I'd say the combo of improved cancer, no chemo, and acupuncture are leaving me feeling pretty energetic. But that's the gray area that I need to watch out for. Just because I have energy doesn't mean I can start working all day and acting like nothing is wrong.  I still need to make myself leave work. And just because I have energy doesn't mean I can start working out or riding my bike like I used to.  I do still get tired. I used to be a real morning person, I'd wake up, take Gracie for a walk, ride my bike to work, etc, etc. All with no problems. Now, in the morning I still get up early, but it takes me a while to get moving and motivated. And often, I crawl back into bed and catch an extra half hour of sleep. I still take my naps and once it hits 8 pm, I am pooped.

I've got a couple of minor aches and pains, which I think is from walking in to stuff. Clumsiness and bruising easily is a bad mix. Lots of bruises.  And of course, in my head when I have an ache, I worry about my bones and if they are impacted.

No procrit shot this week because red blood cell count is hanging around 11.

And that's it. Like I said, I'm in a sort of gray area. Feeling better, but still have things to do to get better.Chemo starts up again in a week and a half.

Friday, February 3, 2012

done with latest cycle

I wrapped up my latest cycle of chemo today. Now two weeks off. During the two weeks, I'll do complete lab work and see Berenson. That's the true measure of how I'm doing. But today my blood count was 11.5, which is really good. It means I am keeping the blood in my body from the recent transfusion and it means that I am making blood and it's not being displaced by the cancer cells. I'll take it.  We didn't get a creatinin count today, but that's ok. I imagine it's holding steady or improving along with the cancer.

I saw Erin, my cancer coach, yesterday. She is super helpful and gives some good tips & advise for dealing with the mental part of this and the fear & worry that comes with being a cancer patient. I was pondering going to a myeloma support group, but never really wanted to before now. I thought it might be more of a downer, in terms of hearing other people's stories. I want support and tips for staying positive and staying focused on being healthy. Erin kind of poo pooed the support groups. She's a cancer survivor and says that the majority of support groups leave you feeling worse or more depressed and not motivated, I still might try one out and see for myself.

I think I might have dreamt about food again last night. Also been thinking lots about friends and family who I want to see this year. You're all part of my support group. I'm still blown away by how great and caring people have been. It means a lot. I told Phan's nurses today that they're part of my support group as well, they are amazing.

I gotta get more regular with the exercise though. Seriously feeling flabby, loose, out of shape and like a wrinkly old man. My hands have always looked old, but right now they look like 90 year old man hands.  I grew a beard back and am letting my hair grow out. I didn't lose it, so I'm letting it go. Or as Berenson said to me the last time I saw him: "I'm going for the hippie look".

And one last is how time flies, it's 9 months into this and I still haven't discovered or even examined what my passion might be. I figured by now I'd be a banjo expert or painting a portrait every week or be an expert of western bird calls. But none of that has happened. Time has flown by.

And that's all I got. Thanks everyone.

Thursday, February 2, 2012

Ice Cream

Ice Cream, that's what I dreamt about last night. I was in a shop with tons of flavors and options. I couldn't even decide what I wanted, there were so many options. Finally chose a chocolate crunch and a brownie ice cream. So good.

Wednesday, February 1, 2012

9 months

Tomorrow is 9 months since my diagnosis. May 2. A day I won't forget.  I could have had a baby by now.  But we're doing good, I can see things tapering off in the near future.

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...