The Whirlwind

Wow...another 3 weeks have gone by without me writing anything here. I swear it seems like just yesterday...but so much has happened.

When I last wrote something down, I was waiting for a call back from the nephrologist. They returned my second call, after another two day wait. I was told to take two pills, one morning and another early afternoon, instead of just one in the morning. Been there, done that. Then they said take two every morning and another two early afternoon. With that dosage, things have stopped getting worse...Finally! Oh yeah, and I'm in the market for a new nephrologist...anybody know one? ;-)

Around the same time, my coordinator at the hospital called my pharmacist to order the self-injectable growth hormone. They quoted her a price of $6,000 for my co-pay! A call to the insurance company's 'case worker' was useless. She told me that I can submit the $6,000 and be reimbursed for 80%; that still leaves $1200 out of MY pocket. We worked it out without using the insurance company's "pharmacy" plan; going to the hospital every morning for two shots put it on the "medical plan" rather than the "pharmacy plan". Saved some big bucks there! However, I was sort of looking forward to my next Red Cross blood donation when I could say yes to their age-old question, "Have you ever taken self-injected drugs?"

We started the shots on a Friday morning. By Saturday afternoon, I felt like I had no energy, felt achy all over. Generally I felt like I had the flu...just like they said. Some hip and sternum pain (where we have most of our bone marrow). I filled their pain killer prescription but was able to get by with Tylenol. This sort of goes against my Life Lesson #237 but other drugs did the trick so I guess it's okay.

The following Monday, I had my port put in. It's officially called a tri-lumen Hickman catheter and gives them 3 places to connect to my blood system...attached right up to my heart. They come out near the front of my shoulder and just dangle there, sometimes I can hear them clink together. It's weird. There's daily maintenance for it as well as a bandage change every 2-3 days or when it gets wet.

Having it put in was interesting. They got me in this X-ray & CT scanner on my back. Got everything covered and I hear the surgeon chatting with someone. I said something but don't remember what...it was basically that they should wait until I'm under to have their little chat. Good thing I said it because they thought I was already out! I know I got a second shot then and thought that was it. I was told afterward that it took three shots of Versed to put me under.

My wife has already described everything through Tuesday so I won't bore you with another description of the same stuff. Suffice it to say that it's been the most unusual time of my life.


So, we finish up the stem cell collection in record time and I figured that I'm off for the week, right? Nope. Got a call from Sarah, the coordinator Wednesday saying that I've got to come in Friday afternoon to sign "consents". Anybody who's gone for just about any procedure knows what this is all about...it's where they tell you anything and everything that could possibly ever happen to you as a result of this. When they say "informed consents", they mean just that. I think it said I might get hit by a truck due to this. They told me about things that might happen 7-10 years from now! I may have left out that we did something similar for the catheter implant as well as the stem cell collection.

That afternoon, I found out that I've got one more series of shots before Chemo day or, as they put it, Day -2...that is two days before stem cell infusion. Yup Saturday, Sunday and Monday after Thanksgiving, I get some sort of shots that'll make the lining of my mouth thicken up a lot. That's to ease any mouth sores that might be caused by the chemo. Lucky me.

Oh yeah, and I'm told that 60% of people who go through this will get shingles. If you've ever had Chicken Pox, the virus that caused it is still hiding in your body somewhere...weakened but waiting. So when my immune system slows/shuts down, it'll cause shingles.

Enough of that stuff...

I'm still discussing medical leave with the HR department. So far, with the existing paperwork, I will not be allowed to work while I'm out. The doc, Sarah and I are working on some more specific wording since HR seems to take things a bit too literally. I WILL not be shut out of the project I've already put a year into...it goes live early next year and I'll be there for it.

At the rate I've been going, my next update might be from the hospital.

To everyone, have a great Thanksgiving, We had ours last weekend before we knew the schedule. Now it seems we're going to another feast this Thursday! Such a deal!

As my wife said, thank you all for your good wishes and prayers.

Bikenut