Wednesday, November 25, 2009

Act Two

I headed down to the state capital last week for my 8-week post HDIL-2 scans. I was scheduled to be there for 3 days, since I needed to have 3 MRIs and the radiology folks said that my kidney could only handle one dose of Gadolinium per day. While not thrilled about having to be away for 3 days, (and I wasn't about to commute there and back more than once) I planned to make the best of it, staying at the Frank B&B (my friend Ellen's house) and using a laptop to work from her house. That way I could keep up at work and not have to use up the precious little paid time off I've earned since returning to work. The plan was to drive down on Monday evening. Late Monday afternoon I got a call from a nurse at Dr. Olencki's office. She wanted to know if I had wanted to schedule my appointments this way. After a bit of discussion, it was determined that I could have been hydrated via IV so that I could have multiple doses of Gadolinium... but trying to reschedule the appointments to be together would probably be impossible at this late date. The nurse promised to talk to Dr. O and call me back. The decision was made that a pelvic MRI, scheduled for Thursday, could be changed to a CT scan, which could be scheduled concurrently with the chest CT I was already having on Tuesday. So I was able to shave a day off the trip.

On Tuesday I had the MRI of the brain first. Afterward I was sent out to the waiting area to drink my berry smoothies before my CT scans. The room was full of people of all ages, from elderly folks to families with children. A TV on the wall had been broadcasting Dr. Phil when I went in for the MRI. Now Oprah was just starting. And she was interviewing Jenna Jameson. Talk about uncomfortable silences in the waiting room... it was pretty funny, though. She and Oprah discussed her book, titled "How to Make Love Like a Porn Star" and her life. There was one family I was embarrassed for, as included in their group were two tween kids there. However, they were siting basically under the TV and seemed to be ignoring the TV altogether. I wasn't all that interested (and she was pretty orange-y toned, not sure if that was from being over-faketanned, or from the TV) so I read magazines instead.

I came back the next day for an abdominal MRI, and the techs poked my veins several times to try to get an IV line before finally deciding to use my Power Port. Finally! It got it full use, LOL.

One of the techs told me there should be results on Friday. On Friday afternoon I called to see if they knew anything. I talked to one of the NPs who read what she could from the reports, but said that Dr. O hadn't weighed in on them yet, nor was she able to locate him. We talked about the fact that I wanted to know as soon as possible if I was going to be traveling back to Columbus. She promised to call me on Monday. On Monday, I wanted to call her first thing, but held off. Finally mid-afternoon I called. The woman who answered said to me somewhat snottily, "she's been trying to call you all day!" Odd, that... my cell (which I had given her the number for) was on and working all day. Plus I know they had my home and work numbers. The woman took my cell number again and told me she would give the NP the message. I was pretty angry at this point... feeling like I was being made out as the guilty party by the woman on the phone. When I got home I checked the answering machine in case there was a message there that Jim hadn't heard, but there wasn't.

On Tuesday morning, we got the girls ready to go to day care; Rebecca didn't have school but was going to day care for a "play day" mainly because we had to go to her school for her parent-teacher conference. I picked up my purse and pulled out my cell, where I saw that I had two voice mails. Both were from Monday evening, one from the NP and one from Dr. O. DAMN! I have a new phone and had changed the ringtone to beeps because the tone I had been using annoyed me and I haven't had a chance to download something I would like. Dr. O said he would try to call me first thing in the morning.

Jim and I went to the conference, where I got to meet both of R's teachers. She has two teachers, who job share; one works until lunch and the other takes the afternoon classes. The conference went wonderfully; they had no weaknesses to discuss but lots of praise for our girl. We were both very proud. I crack up when talking to teachers though, because they always talk about how mature R is, and never seem to believe that she can be a very silly childish nut at home. These teachers did believe it and laughed. I'm glad she saves her silliness for at home. As we were wrapping things up my cell rang so I went out to the corridor to take the call.

It was Dr. O, as promised. He told me that all of my mets are stable, so there was no growth of any of them, and that there were no new nodules. When I had talked with the NP, she had mentioned that the abdominal MRI mentioned a nodule in a different region of my liver, but that the radiologist interpreting the MRI noted that the region the nodule was in may not have been scanned in September. There is something in my mesentery, which the pelvic CT mentioned as having "slight growth". The NP had told me not to be concerned since Dr. O had not mentioned this to me previously, and likely it was something he was unconcerned about. That turned out to be the case. He mentioned it to me but said something about some kind of blood cells likely causing the growth, so he was disregarding it as a trouble spot. I didn't really catch what he said in full, so when we see him on Monday I plan to ask again and write everything down. At any rate, he told me that he wants to see what another round of IL-2 will do for me. We agreed to see each other on Monday, and signed off.

Wow. When I had first talked to the NP, I was happy that there was no mention of a lot of new growth, and that it sounded like everything was stable. A part of me was disappointed, hoping for shrinkage or the magic words "complete response", as remote as that possibility can be, especially after just one round. But the more I thought about it, the better I felt. Lots of people get IL-2 and have growth continue. I didn't. Right now here is what I am picturing, which I told to Rebecca this morning:

The first round of IL-2 has knocked the "spots" to the ground, off their feet. They are dazed and confused so they can't eat or grow. Now we're going to send in a bunch more T-cells to smother the spots and make sure there are no tiny cancer cells floating around! I told R that I can't promise anything but that is what I hope will happen. She liked that explanation and I hope it will help ease her pain at our leaving her and her sister for two one-week periods next month. I told the girls about it on Tuesday evening. Being just four, Carly just kind of brushed off the news and went about the business of playing. Rebecca, on the other hand, was reduced to tears. It's hard on all of us, and especially this time of year, but getting through this will make Christmas all the sweeter for us.

So the schedule is: Jim and I will go to Columbus on Sunday (11/29) and stay at the Frank B&B, so that we can be at Dr. O's office by 7:30 am. There the nurses will place the needles in my port and take blood, and I will meet with Dr. O. Then, as usual, we'll drive over to The James, get admitted and get a room. If we get settled in time, I'll be able to start with the 2pm infusion. The question in my mind is, will I start in a semi-private room and then move, like I have done the other two times? Probably, though I am hoping not. I want to get settled while I feel good, put up my photos and inspirational signs that I made last time but never put up... not that I would have really seen them in my fog last time. But, whatever will be, will be, and my sweetie will be with me so he can tape up posters for me. :-)

I should be home sometime that following weekend, and recover at home for the next week. Then we will return to Columbus on 12/13 and repeat the cycle. Barring any serious complications, we should be home the weekend before Christmas. I've done most of our holiday shopping, and am hoping to get it wrapped in the next couple of days, but still have more to do. Somehow what needs to get done, will get done, and I know that if I don't have energy to do some things, as long as I can communicate them to Jim, he will take care of them for me.

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