Tuesday, August 25, 2009

The Buckeye show

Monday was the big day... my consult at OSU with Dr. Olencki. We went to Columbus a day early and had a fun time at the zoo with our local friends, Ellen and Heather. Afterward we returned to Ellen's house for Fred Flintstone steaks and good conversation, then on to the hotel. Man, I was tired... walked a ton at the zoo, and on Saturday I took Carly to a birthday party at Memphis Kiddie Park, which was all walking and standing, and later walked up and down the street several times during our block party. Sunday night my feel throbbed. Guess it's my body's way of telling me that 1) I need more regular exercise, and 2) I weigh too much for my feet to handle for long periods. Ah well.

Somehow I either turned off the alarm in the morning or didn't set it correctly, so woke up about an hour later than we meant to. Fortunately we still had time to pack up and have breakfast before dropping the girls off at Ellen's. By the way, I have a new love... Hyatt Place. I had never considered staying there before but ended up in one last month (thanks Michelle) and we all really liked it. So we stayed in one this trip too. We really didn't have time to enjoy the flat screen tv or the pool, but maybe next time...

We ended up running a bit late for the appt - were supposed to be there a half hour early but didn't leave in time. Then, we drove around the parking garage for a bit until we found a space. Upon entering the garage, we were both shocked that we didn't have to get a ticket, in other words, the parking was free. Free parking is not part of the Cleveland Clinic experience, at least on main campus. Of course we weren't at the hospital itself... anyhow, we checked in at registration and then headed up to see the doctor. A nurse took a history from me, then Dr. O's nurse practitioner talked to us for a while. She went over the HDIL2 program, and asked a number of questions about my cancer history. At one point she asked how I was feeling about all of this, and I started to cry, thinking about my girls. They are the biggest reason that I am looking to put myself through this hell. It's not that I don't consider my life valuable for myself, or for Jim, or for my family and friends. But the very thought that my girls might have to spend any part of their childhood without their mom enrages me; the unfairness of it is beyond belief. And then I get angry on my own behalf. It was always my dream to have a family, and I love mine more than I ever imagined I could. The unfairness of having THAT cut short infuriates me. I guess I need to channel that anger into kicking the cancer the hell out.

I relaxed after my cry and we talked some more. Then Dr. O came in. He talked more about the program, in terms of what pre-testing I will have to do in order to be approved for the treatment. I have to go through a number of tests and procedures, all before my scheduled admission date of September 10.

Up first is a MRI of the brain - I kind of hope they find one in there...
but seriously, they need to see if I have any mets to the brain that we don't know about. Nobody thinks they will find any, but if I do have them, the HDIL2 is off. So I need to have that first. Dr. O likes to have his patients go into a wider MRI, so in order to get that done right away, my appointment is on Friday, at OSU, at, get this, 9:15 PM. Yeh, PM, as in bedtime. And since I do better in the tube when I have taken some xanax, I will not be trying to drive 2+ hours home after that. Instead, Nurse Ellen has graciously agreed to drive me to and fro as well as to house me for the night. Thank goodness for wonderful friends.

I also have to have a stress test, a pulmonary function test, CT scans of my chest, abdomen and pelvis, and a consult with a cardiologist, which includes an echocardiogram. All of this has to be done in Columbus. Dr. O explained that back when he was on staff at the Clinic, they got the idea to see what would happen if their patients had all their testing done at the Clinic. They found that the complication rate decreased by 95%. I was definitely sold by that number!

And as the piece de resistance, I will be having a port installed, to infuse the IL2. In fact, I will become a Power Port girl! Doesn't that sound better than a Power Puff girl? I thought that the idea of having something implanted in me would squick me, but turns out, not so much. I would say this is the first time I've had something implanted, but they put mesh in my side/abdomen during my resection in February. This will be the first time we *interact* with something implanted though!

It just sucks that I have to travel a lot over the next couple of weeks, which is disrupting my work life and my family life. Rebecca started first grade today (more about that later), which has us all excited. She is very upset about my being away over Friday night. And even more upset about the prospect of me going away for several days. I know we'll get through this, but it's heartbreaking to see her so upset. Carly doesn't really understand that much right now, but I anticipate that we will see more reaction from her as the time comes.

Assuming all the tests come back favorably, I will go into the hospital for 5ish days starting 9/10. I'll go home and then be re-admitted for 5 or so days on 9/24. This means I will be spending my 45th birthday in the hospital. Oh boy, that sounds so appealing. I actually don't care all that much; I am happy to celebrate my birthday with my family and VERY happy to be getting older rather than the alternative, but the day we do celebrate isn't a big deal to me. However, it's something I get to bitch about, so why not.

After these two sessions, I will go home for 8 weeks and then have new scans. If the scans show any of the following:
  1. all spots have disappeared (the dream scenario)
  2. there is shrinkage in the current spots and no new ones appear
  3. the current spots remain stable, with no new ones appearing

then I get to lather, rinse and repeat the two weeks of IL2. If they see any growth or new spots, I'm done.

There is another decision point, too. Dr. O offered me the option of taking part in a clinical trial. I would get the IL2 as above. Then, during the eight week break before scans, they would have me take an approved RCC drug, Nexavar. The thought is that the combination of the two drugs will increase the chance of response. However, the trial is a phase 1 study, which means that they are 'trying this out' on patients. This combo has not been studied before. According to Dr. O, they have only had a few people sign on to the study. I like the idea of helping to further medical science and have a family history of medical volunteerism. My dad was involved in two different clinical trials when treating his lung cancer. His father was treated with radiation for leukemia in the 1950's; he had to go to Columbus for the treatment which was at that time new, and very harsh since they didn't know quite what they were doing yet. However, my gut doesn't have an excited feeling about this trial. Also, if I would have to travel to OSU more frequently because of being in the study, I would be most unhappy, especially as the weather will start to worsen. I have driven I-71 in driving snow and never want to do it voluntarily! I have asked my Kidney-Onc group and Dr. Rini for their thoughts; we'll see if they say anything that changes my mind.

3 comments:

Sherry S. said...

Liz-
I've been stalking your blog for updates, so it's great to "hear from you."

I'm glad that you were able to plan a trip to the zoo around your doctor's appointment.
It sounded like a nice day!

I hope all your upcoming tests turn out well so that you can get
on with your treatments as planned.

When your girls are teenagers, show them this post. If they don't realize it already, they need to know what a kick-ass fighter their mom is!!!

Love ya
-Sherry

Joannah said...

We are going to be doing this about the same time, girl! We have done the CT and the brain MRI, and tomorrow is the bone scan. Friday is his PFT, and next week we'll see the cardiologist. I think you might start sooner than Michael does, but it's going to be close.

Anonymous said...

You sure as hell are gonna kick the cancer out!! I need a mom friend for all the coming years of ballet recitals that we have to help with! Lots of prayers and warrior vibes being sent your way!

Stef