Sunday, September 06, 2009

Finishing the ducky lineup

aka getting my ducks in a row.

On Tuesday I had an appointment with one of the cardiologists at Dr. O's preferred practice. I was running late leaving Cleveland that morning, as I wanted to see Rebecca onto the bus. So I was a little concerned about being considered 'late' for my appointment, but they were running behind so it didn't matter. The doctor was very nice, told me that my echo had been fine, and then asked me if I was scheduled for a stress test. I thought 'here we go again' but then she told me that she generally only ordered them for older patients who had cardiac issues. She had me stay for an EKG and said that if that was normal, that she would clear me for HDIL2. It was and she did.

I had a short-ish amount of time to get from their office to OSU for a pulmonary function test. I didn't think that would be difficult but it was - I found it very challenging to blow into a tube for a long time without getting my tongue in the way, stopping, etc. but got through it. The tech was nice about it though I was getting frustrated. That all seemed to go well and I was free to go.

Since it was early afternoon, I met up with Ellen at the mall to exchange the aforementioned offending shirt at Gymboree. While at the mall I got the girls some things on sale at Children's Place, got myself a new purse and wallet that I will have Jim and the girls give me for my birthday, and was treated to Starbucks by Ellen. It was a treat to just get to shop child free! I love my girls and hate to be apart from them since we are apart from each other so much during the week, but it was a stress-free experience shopping with just another adult. On the way back to Cleveland, I had to stop at Grandpa's for more fudge, as per family request. The last hour of the trip was a bit hard on the back but I made it - though I don't recommend the round trip in one day.

I got one day back at work, then was off to Columbus again for two days. This time I was accompanied by Jim's mom, Marianne. We had a very nice drive down to the hospital, where I checked in for CT scans. There I encountered the only odd customer service experience there so far. A woman called me back to put in an IV line and give me contrast to drink - unfortunately that was the hated barium, though I tolerated it much better than I had the first time I drank it. The issue was that I had an appointment, but no order from the doctor on the computer for the test. So this lady didn't seem to know what to do with me. Uh, contact the doctor's office maybe? Then she looked briefly at my arm for a vein for an IV line. Almost immediately she decided to use a vein on the inside of my right wrist, while commenting on the small size of the veins there. I knew this would be a bad idea and I was right. She fished around for a bit, ow ow ow, then finally pulled the needle out and said that she'd have to have the nurser put in the line. Fine by me! So she sent me back to the waiting area and told me NOT to drink the barium until she'd confirmed the orders, which she did within 15 mins. Finally she called me back again and called a nurse to put in the line, which the nurse did on the first try. The techs came looking for me while the line was being placed, so I was ready to go. The scans themselves were fine; been there done that enough times already that I know the drill. One of the techs came into the room to pull my line and started asking me pointed questions about why I was there, what I was having done, etc. The questions seemed abrupt until she said, "I'm asking you this because I have what you have." Whoa... turns out we are the same age. She has a 3cm tumor and is scheduled for a partial nephrectomy in October. I could only imagine how frightened she must have been to see my diagnosis. I reassured her that she was likely to only need that one surgery and that would be it for her. I also told her about KCA and ACOR. Hopefully she'll follow up with them and feel more comfortable. I felt so bad for her; working in the medical profession has to make it that much harder to have your own health issues.

After the scan, Marianne and I went to Ellen's house to spend the night. We met Ellen's husband Jay and our friend Heather at The Pub. We have one in Cleveland though neither Marianne nor I had been there yet, so this was a good time to try it out. We both enjoyed the food and company, though it was LOUD inside. I am not a beer connoisseur, but had I been in the mood, I probably would have tried one of their beers. We went back to Ellen and Jay's where we talked and watched TV later than we should have before retiring for the night.

The next morning, we were scheduled to be back at the hospital at 10:00for my port placement procedure. We missed the time by a bit but it didn't seem to be a problem. We got to the pre-op area, where I got to change into a lovely hospital gown, get an IV line - more ow ow ow - and wait. Finally went downstairs to the OR area, though I had to go to another pre-op area first. The doctor came to see me to go over the consent form - I just love hearing about all the weird possible tragic things that could happen, just before going into the procedure. Most of it was standard stuff, infections and so forth. Then he tells me that if I take a deep breath at a certain point when they are putting the catheter in, that I could create an embolism that could be fatal. Super! Fortunately he told me that they would be closely watching my breathing and that at that point they would either remind me to continue to breathe slowly and easily, or would ask me to hold my breath for 10-15 seconds.

Once in the OR, the nurse and radiology tech bustled around while chatting pleasantly with me. Everyone that day was unfailingly pleasant - saying hello and smiling even if just passing by. Anyhow, they started to give me Versed, and then the doctor came in and I recall the stinging sensation of him numbing my chest area. Next thing I knew I was all bandaged up and ready to go back to pre/post op. I mentioned to the nurse that I must have slept through the procedure. "Oh no," she replied, "you talked all through it." Uh oh... what in the he!! did I say? She laughed and clarified that I answered all of their questions. She told me that once a patient screamed all through the procedure then afterward, commented that she must have slept through it. So, I am convinced that Versed does cause amnesia. Pretty cool.

Back to post op, where they monitored my vitals and were impressed that I was so awake and alert so soon. Then they took me back to the initial floor I'd been on, where Marianne was allowed to meet up with me and I got a sandwich, chips and juice, my first solid food since The Pub. I was able to leave by about 4:30 so we headed home. I felt well enough that we met Jim, the girls, and Jim's dad for supper at Bob Evans.

On Saturday I slept in, got up for a while, then took a decently long afternoon nap. My body needed the rest, for sure. The fact that I didn't take my ADD medication helped, too.

I am to report to Dr O's office on Thursday at 7:30 for bloodwork (they will use the port, yay!) and to see him before being admitted at the hospital. The hope is to get me in and settled in time for the 2:00 infusion. As the big day gets closer, I'm getting a bit more nervous about the whole thing. I think the idea that is on my mind the most is that I will likely be removed from the outside world, because I will be feeling too sick, for several days. The thought of being unable to converse or otherwise participate in any kind of communication blows my mind. It's only for a short time, relatively speaking but still seems so weird to me. I realized the other day that if I respond to these two cycles in September, I will have to go through two more cycles, probably around the holidays. I told Jim that once I am recovered sufficiently from these first cycles, we need to get our holiday shopping completed so that we don't have to worry about that later on. And if I don't respond, then we're ahead of the Christmas shopping game, so it's all good.


sherri said...

I hope your journey continues "all good."

I'm thinking of healing for you and for the sake of your family more than you know.

onesillymama said...

Thank you my friend... I do feel all the love, prayers and positive vibes folks are sending my way. Everyone mentions how calm I am about everything... I attribute that to all the love flowing toward me.

Joannah said...

Liz, I will be praying for you! We are coming up behind you with Michael's HDIL-2 experience. I'll be on my knees praying for a complete response for you both.


onesillymama said...

Thank you Joannah! It is my hope and prayer that we all will meet one day in the not too distant future and that Michael and I can give each other a 'complete responder' high five.

Sarah said...

Yes Liz, you have a lot of love and healing wishes flowing your way. I will continue to keep you and your family in my thoughts.

Becky Clark said...

Just caught up with your blog. My you've been a busy girl! Best of luck on Thursday and beyond. This treatment sounds so promising. As always, we are keeping you in our thoughts and prayers.

Rachel said...

Good luck with everything! You're in my thoughts, and I'll take special note on Thursday at 2 your time.

Julia said...

Liz, if anyone deserves a swift and complete cure, it's you. I hope that your treatment is less taxing than you expect, and absolutely successful. Lots of prayers going up for you--you and your family will be in my thoughts. Sounds like this treatment has a really good chance of kicking this cancer's butt for good.