Update
Okay, a certain person, laying on the sofa, is reproaching me for not updating my blog. I will try to do that -- now.
Several appointments have gone by that I have not reported on. On my birthday Daddy, Mara and I met with Dr. Pelley. Well, it was just what we expected. Yes, it really is back and no, there really isn't anything we can do. Yes, it could be 6 months or it could be 24 months, but we aren't looking at years. Yes, he thinks the NCI trial is worth looking into. And he ordered the necessary stress test, which I had today.
Then a week later, we met with Dr. Espinosa, my original oncologist who sent me down to the Clinic. We were meeting with her for a second opinion. Well, it wasn't any better than the first. The only difference was she said 6 months to 12 months, and, oh, by the way, you are already 5 months into that.
I did the stress test today. That is a thallium stress test, for those of you who are going to look it up on the Internet. It was lengthy, but not as long as predicted. Only 3 and a half hours, not 5. My goal was to get my heart up to 163 and I only made it up to 145. I don't think that is really the point of this test, though. This one is to show how my heart takes up and uses my blood. Or something like that, but it was really discouraging to not last very long on the treadmill. I haven't been working out with Merry pretty much since her surgery in August, but even so, I had been noticing that when I did, I did less and walked more slowly. I guess I have to own up to the fact that I am not fine, even though that is the report I give whenever asked.
And I haven't heard from NCI. Since I didn't hear today, I don't expect to until sometime next week. So don't hold your collective breaths.
And I am feeling sort of discouraged about the clinical trial. I hate to even write that, but it's true -- today. I'm just not sure I can go through all the pain, discomfort, endless testing, illness and separation. Doing the stress test sort of pointed that out to me, anew. Who knows how I will feel tomorrow.
Comments
So someone nagged you about updating and when you do nobody replies. Just how kewl is that! Huh?
Posted by: papa | November 27, 2006 1:28 AM
It just contributes to the sad. And I don't think I am the only one feeling it of late, maybe.
Posted by: Ma | November 27, 2006 10:16 AM
Hey, Maman.
You're not the only one feeling sad. I always felt like I had something to say about everything, but now I feel like there is nothing to say.
I still have hope for the trial. And you're a fighter, Maman. You'll see more than you think.
- Nathan
Posted by: Nathan | November 27, 2006 10:26 AM
Stephanie, it was great seeing you on Saturday. Whether it is 6 months, 12 months, 2 years or 10 for you, I'll always be grateful for that visit! ... (and the Stuff & Clutter recipe - I can't wait to make it!!!) Thank you!! (And John was SO much more relaxed this time ... I had forgotten that, last time he was at your house, he knew nothing about anyone (other than Mara, of course), had a great time talking with Dustin. Last time, I think he just sat there looking cute. :)
Posted by: Crystal | November 27, 2006 10:38 AM
Stephanie,
I am sad!!! I keep hoping and praying for a miracle!!!! In my hearts of hearts I do believe in miracles!!! My mom is a walking miracle she should of died at 37 and she's 87.
Nadine
Posted by: Nadine | November 27, 2006 8:22 PM
Dear Stephanie,
I read your most recent blog posting Friday evening, not long after you posted it. I wanted to respond right then, but I honestly could not clearly think of what to say. This morning I noted Dusty's puzzled comment at the silence that greeted your Friday posting. But, I assure you the silence stems not from apathy.
I understand your discouragement following the stress test; more importantly, I feel it. I believe the feelings you expressed in your posting are justified under the circumstances. I fear that some glib response on my part would tend to trivialize the wrenching emotional dilemmas you face. Margaret and I pray that God grant you wisdom as to whether or not to submit to the NCI clinical trial. We understand the reasons that would incline you, "yes," and those that would incline you, "no." Were I in your situation, which I find difficult to imagine, I would incline to letting the NCI team make the decision for me, i.e., as indicating God's will. But, in truth, I honestly don't know what I would do. The only real advice I offer is the following: If NCI accepts you into the trial, I urge you to phone Amy Justice (Margaret's medical doctor sister) for the advice she has offered you. She can counsel you from the perspective of her knowledge of epidemiology and current medical research and of her own real life experience caring for cancer patients. But, I also think there is little point to calling Amy if you are not accepted by the NCI study, as she will not be able to give you any more information than you have already received from your two oncologists.
We rejoice at having had the opportunity to visit with you and your family under relaxed circumstances weekend before last, and also at Jesse, Monica, and Cameron's participation.
Love,
Claude, and for Margaret
Posted by: Claude Dean | November 27, 2006 10:45 PM
J'ai lu avec grande attention les nouvelles de Stéphanie, et je souhaite de tout mon coeur que le traiment qu'elle expérimente lui apporte soulagement et répis. Qu'il doit être difficile de vivre dans ces conditions d'incertitudes et de mal-être physique, jour après jour. Elle est vraiment extrêmement courageuse. Je suis contente que Mara soit auprès d'elle. Est-elle revenue définitivement d'Israel ? où bien est elle en voyage près de sa mère ?
Isabelle
Posted by: Isabelle de Seze | November 27, 2006 11:33 PM
Tante Isabelle, je suis revenue definitivement d'Israel (et je suis enceinte!)
Posted by: Mara | November 28, 2006 9:46 AM