More Not-So-Great News

Okay... I received my response from Dr. Thornton and MPRI and my hunch that they were proposing that I not begin radiation until August was correct. In fact, they are actually predicting that I would not begin radiation until the very end of August. In "Not-So-Great-News" I mentioned that I might post for all of you the letter that I wrote to MPRI concerning this delay of schedule. I am going to post it for all of you to read. It is lengthy, but I think it will help you to better understand why this delay is so unacceptable to me. You should probably know that I have attempted to temper my true anger and frustration within my correspondence to MPRI simply based on my notion that it is never a good idea for one to burn bridges that one may need to cross. Here goes:

Dr. Thornton, Kim, and the Staff of MPRI:

I apologize in advance for the length and intensity of this email. I know that you are all very busy, but feel that this communication merits your full consideration:

First and foremost, I understand that your facility works under very strict guidelines and perhaps there is nothing that can be done in this situation; however, I am not certain that you understand the full ramifications that this delay will have on me personally. I am going to outline why this delay is unacceptable to me based on how it will affect several aspects of my life. Before I do, though, I need to tell you my biggest concern is that I was mislead at my original appointment with you on Monday, April 24, 2006. My friend Nicki and I were both present in this appointment and took verbatim notes with each of you. At this appointment I was told verbally by Dr. Thornton "We will bring you back sometime next week for your planning appointment." and I was also directed to "contact Kim if I have not heard from MPRI within 3 days." Although I did not hear back from you directly within that time period, I sent you an email on Friday, April 28 and received your respective responses on May 1 and May 3 respectively. On May 3, Kim alerted me that the hold-up was my insurance company. This holdup was unacceptable to me, so I worked diligently on my end to problem-solve and my pre-determination paperwork was signed on Friday, May 5, 2006. It was my understanding at the time that insurance was our delay. I was not told that your facility was also behind.

I do not understand your quota system, but can document that there was no mention of it as a cause of a delay until I received Kim's email yesterday. In fact, at no time up until yesterday had I been told that there could be this long of a delay. Right now I am caught in limbo. Goshen Cancer Center is poised to correlate plans with you and even ready to start radiating me, but Dr. Thornton indicated that he cannot authorize my IMRT radiation until he looks at the plans side-by-side. Since his plan will not be ready until August, both Goshen and I have been immobilized. I am under no misconception that this month could be the difference between life and death. After all, I've lived with this cancer for 10 years now and it hasn't killed me. Yet, this is cancer. It is not lying dormant. Until we start treating it, it is progressing in some capacity. If I do not start radiation until August, essentially I will have sat around and let this cancer grown and multiply for nearly half a year. Ultimately, I feel as if you have stripped me of all my options. If you had been upfront with me about this from the beginning, I would have likely asked you for information about the traditional proton radiotherapy and requested a referral to Boston or Loma Linda. Either way, it is important to me that each of you understand the effects that this delay will have on me in several arenas of my life:

Physically:
1. Right now I cannot smile, chew on my right side, or taste much of anything. I'm having a hard time articulating my words (one of the hardest to say is my own last name) because my the right side of my lip does not move. I cannot blink my right eye, consequently it is becoming dry and fatigued which is affecting my vision (I've run over three curbs and nearly demolished one mailbox). I am starting to notice more effects on my equilibrium and balance. So, here I am wondering..... "What the heck am I going to be like by the time you actually get around to radiating me?"
2. Who the is in charge of me and my pain while I'm waiting in limbo? No one seems to want to administer my meds and my head feels like it is perpetually in a vice? When I hug someone and they press against my cheek, it is even painful.

Emotionally:
1. If you can't already tell, I am losing some steam here. It seems like my optimism and strength are being whittled away by intertia. That is scary to me because Dr. Thornton explicitly told me that attitude makes all the difference with this cancer. It just does not seem humane to tell a person "The best thing you can do for yourself and for this cancer is keep a positive attitude" and then turn around and give them news/information/obstacles that make it virtually impossible to follow "doctor's orders."
2. I have a foster daughter -- scratch that, TWO foster daughters -- who need me. They are already facing the possibility of having me gone for the summer. Some of their biggest needs are academic. Now I have to tell them that I am going to have to move away for 8 weeks during the school year when they needs me most. They will no longer be able to come stay with me or visit me because they will be in school. These are kids who have never had a support system. They finally get one and your quota is going to take it from them.
3. The majority of my friends and family are teachers. They are free in the summer. If I am living in Bloomington from June-August, they will come visit me. You have scheduled me so that, not only am I facing a very scary cancer diagnosis and treatment, but so that I will be forced to go it alone. I can't imagine that is the best-case scenario for my mental health.

Professionally/Financially:
1. Because I am a teacher, my calendar year essentially begins in August. Under the original schedule we had projected, I would have been able to return to teaching full-time next year. This cancer has already ruined the remainder of my 2006 school year. I am not teaching my students. I am missing the one unit where I know kids actually learn a real-life lesson. Now, I am facing the prospects of not starting off the 2006-2007 school year. Do you know the ramifications of that for a teacher? If I don't captivate these 125 freshmen students from the moment they step into the building, I will lose them for an entire semester or year. Someone else will be setting the expectations for my classroom. Someone else will be setting guidelines and policies and establishing the overall tone/feel of the class. Someone else will be establishing the initial relationships that ultimately determine whether a kid is "hooked" into the class or not. It is virtually impossible that this other person will be able to execute this the way that I want it executed. And, when I return I will be facing an uphill battle to get these kids back. For some kids, this will be the difference in passing ISTEP, getting a diploma, and making something of their lives.

2. I derive a great deal of my own personal identity, energy, enthusiasm, and vigor for life from my occupation. Dr. Thornton, I believe that you yourself said that maintaining my positive, fighting spirit is one of the best things I can do to battle ACC.
3. I am currently depleting my sick bank by teaching only 1/2 days. When this school year ends, I will break even in the sick bank. If I do not start radiation until August, I will be able to sign a regular teaching contract; however, I will be forced to borrow 40 days from the sick bank. At the end of my teaching career I am paid for each sick day as part of my retirement package. Your schedule will adversely affect my financial future.
4. If I had been scheduled in Bloomington according to our original agreement, I would have been able to take the one master's class I could not attend at IU Bloomington or IUPUI and stay on track to graduate with my MSW in the spring.This option does not exist in the fall as I am enrolled in 2 classes and am scheduled to complete an internship. This degree would have resulted in $8,000 annual pay increase . This delay in the schedule will costs me not only retirement benefits, one whole contract year without this pay raise.

I have many more concerns that I cannot outline due to time constraints. Ultimately, I know that MPRI is the best place for me to be. I have a great deal of confidence in you. I want this to work; however, I need to hear from you -- each of you -- regarding this. If we cannot find some way to make this work so that I can resolve my issues of my physical deterioration and return to teaching in the fall, I need you to give me other options. Can I go elsewhere? Is it safe? Is there any treatment I can be receiving now? Is there any way Goshen can safely start me? I guess this is my ultimate question: Is my treatment being delayed a matter of legality due to your IDE rules and regulations, or is it merely a scheduling/logistical nightmare? One is acceptable to me, the other is not.

Thank you in advance for your consideration,
Ashli

I have already received a response from Dr. Thornton. It was again vague and elicited more questions. I have already replied and hope to hear back from Dr. Thornton tomorrow. When push comes to shove this is their explanation: "Kim has a firm handle on the schedule, and she is informing me that we would not be able to start you with protons until August. This is entirely due to our commitments to previous, earlier patients." Of course, I pointed out to Dr. Thornton that if the delay is due to commitments to previous patients, then those previous patients must have existed at our original consulation of April 24th (had they not I would be the previous, earlier patient and my plan would be running right now), therefore the delay was predictable and had he informed me of it at the onset, I would have begun questioning this course of treatment three whole weeks ago and had time to make an informed decision that is my physical, mental, and emotional best interests.

But I can count on AA (that's what I'm going to start typing instead of Amazing Alysia) who spent hours on the phone on my behalf and spoke to Brooke in Loma Linda and, if I can expedite them my medical records and the doctors agreed to take my case (they are skeptical to take anyone labeled "stage 4"), they could begin planning in a week and I could begin radiation at Loma Linda sometime in June and be back to start school in August and then called Anthem to verify that I would not have to battle them again for pre-determination paperwork and learned that the treatment, not the facility is what needs the seal of approval so there is no delay. Furthermore, Loma Linda is considered in-network. All this to say I could potentially moving to California within the month.

How is that for a 24-hour update?