Update from Bob . . .Saturday, Jan 9. 2010

This may be the best thing I've ever done, or the worst thing. I'm going to bare my soul, as best I can anyway . . . this is extremely difficult for me, and I'm not joking . . . if you saw my tears right now, you would know . . .

Yesterday was a tough day, and the longer it went, the worse it got. I WAS NOT GOING THROUGH ANOTHER WEEKEND WITH NO ANSWERS. After numerous calls to the doctor's office, I finally made my point that there was a crazy man out in West Lakeland on a futon who was in pain, was hungry and crabby and dirty and ready to slap a little dog that doesn't really deserve it and that if he had to he get himself into the car—even though he has no license, can't sit, and is doped up on narcotics—and drive down to the U of MN and start pushing, he would.
The doctor called me back in a few minutes. Wow, 5 p.m. on a Friday. He said he was still working at the office, but who knows?

Me: Doc—I need some closure to the week, here, and I was promised a call which I never got.
Doc: OK, let's tell you where we're at. I'm sorry you didn't get a call, as promised. Bob, we are calling this a soft tissue sarcoma of the bone. It is high grade and high impact. In medical terms, it's serious.
Me: And this has been verified and concurred by more than just yourself with a medical manual in a waiting room?
Doc: Yes. I had at least 12 specialists in the room with me. They are not infallible, but they are the best.
Me: So tell me where we go from here.
Doc: On Monday we will set you up with a specialist in chemotherapy. We need to start with this, to soften this thing and just be sure it hasn't spread. The only way to to do that is with Chemo, as it hits the whole body. After that, the plan is that I take over and do surgery. The timeline is not known now. It's a work in progress.
I'm going to jump ahead to my area of specialty. I want you to remember that all of your nerves for functioning of your right leg are pretty much running through this area. There are complications and implications to everything now. Our main goal is to keep you alive, the secondary goals are to keep other functions of your body working in the order that will best provide you with the best quality of life. This includes some very personal issues which may be affected. I want you to be aware of that. What you deem important as a 43 year old man right now may not seem so important in a few days. And vice versa. We could come out of this with no scars; we could come out with some real issues. I have to be honest.
Me: That's all I want, Doctor.
Doc: These are hard calls to make at the end of the week. Please know that.
Me: Yes, sir. I can't even begin to tell you how hard that part of the job must be . . . I will wait to hear from someone on Monday.

That ended my conversation with the doctor. Now, you all know what I know.

I hung up and bawled my eyes out. Just a few months ago, I was on top of the world, and now I felt like it was over. Yeah, I'll admit, I pulled out the old "Why me . . .?" That is wrong. Haven't used that in my life yet; why should I now?

Jen has learned that I can take a year of anguish and pain and pretty much cry it out in about 15 seconds. And then I feel a bit better until the next wave. I know there is some kind of pain killer in tears. Not as good as Oxycodone, trust me, but it's good.

My sister texted and knew I was not doing well. Sorry, Nancy. My parents called and I ignored it, not having the energy to talk at the moment. We have been talking every day, and yesterday due to my fault, we missed. Still haven't talked to them today; want to get this done. And then, Jen called after work,and I relived everything again and started crying again. I told her to meet her friends for the planned Friday drinks: she needs to stay busy. I was going to take a shower and order a Savoy Pizza for delivery and lay on the couch and watch golf. I did that. It was good.

I'm so glad Jen went out. I worry about how this affects her. Just because I can't get around doesn't mean she should be a prisoner. That goes for now and whatever gets thrown at us in the future. I was nervous, scared, alone. But I did get my shower in. A hot one, which I do not normally take. And eating is always fun: this time trying to eat pizza from a prostrate postion on the couch. Trying even to drink a beer. In the dark. (By the way - barely had a drop; tastes terrible. Wasted one of Jen's favorite beer, Bell's Two Hearted Ale. Goin' to hell for that one.) Watching a golf tournament taking place live in Hawaii. Love to be there right now. Trying to relax. I got some relief, as nothing says LOVE like two dogs who really want some pizza! What suck-ups! They brought me some laughs, as Gaia let Rocco know that she is still the Queen Shit in the house but Rocco still hasn't learned that lesson. They were rewarded for their efforts.

I got some rest and relaxation, if only for a short time. My life has been compressed into little 15-30 minutes of bliss or sleep with a lot of nothing in between. I've memorized every infomercial for cleaning and cooking gadgets . . . that Extenze intrigues me, however . . .

I didn't have too many words for Jen when she got home. I should have forced more out, but I was exhausted. I wanted to try our bed tonight, and Jen wanted to be right by me. I made it until about 1: 30 a.m., as then I was self-conscious of turning and fidgeting and also knowing that at 2:00 a.m. it's CANDY TIME—i.e. pain killers (according to my Zen-minder, an app I downloaded for my Crackberry. Have all my meds and the times I take them programmed into it. It's sofa king awesome - sends out a lovely chime-like alarm telling me it's time to take my opiates). I went to the basement for the rest of the night—the pharmacy—so as to be out of the way and have a bit of space on the opened futon. Once again, my life played out in front me. Not what I've done, just what what I would like to do yet. Another few seconds of tears, and then decided to just dump that line of tinking for the rest of the night. Plenty of time to worry about that later, and besides, it may be a bit fatalistic when I don't have to be... I've never wondered about the future so much as I have in the past month. Is this when you realize that you're getting old, and come to accept things you never thought you would be thinking about?

I thought that during that night I would scratch out this posting—it would normally take me 7-8 attempts at standing at various times—give it to Jen to brush up in the morning, and have it ready for the web bright and early. Didn't happen that way. I have typed this out in bascially one 'standing/kneeling' configuration at my main computer—still not comfortable—and have hit the pain wall. I'm going to hit the futon for a few minutes . . .

OK—I'm back.
Please let us know if we are overloading you with new blog postings. It seems most really enjoy them, and we're happy to oblige. I have a few ideas for some new ones in the future. Some FUN ones! If nothing else, we have been asked to keep the medical progress uploaded. We will do that. I have so much appreciated the e-mails, the text mesages, the random thoughts, the blog comments, etc. from all.

I'm still kind of reserving the phone calls for my family and doctors, but you can call and leave a message if you want. If I can't answer, I won't. It's very simple.

All my love!
Bob
651.336.6625
rjandrzejek@comcast.net