Looking for answers.
I waited a few days after emailing Katie, and then I sat down to write a letter to Dr. Carson. She was, after all, Joanie’s main doctor, and even though a lot of the treatment was now being done at Mid-Dakota Clinic in Bismarck, under Dr. Thomas, she was still a vital part of Joanie’s treatment.
The days since the June 8th meeting raised more questions than it answered, and I viewed my job as that of the person who would attempt to find answers. Joanie, on the other hand, seemed more focused on getting on with her life, and that was as it should be.
So, with that in mind, I sent the following letter to Dr. Carson:
June 26, 2007
Ms. Linda Carson, M.D.
Dear Dr. Carson:
Well, it has taken me up to this time since our last visit with you on the 8th of June to digest the results of Joanie’s appointments with you and Dr. Dusenbery.
We drove back to Bismarck that day somewhat perplexed, with the feeling that we didn’t know much more after the appointments than we knew prior to the appointments.
Dr. Dusenbery has indicated to me in response to an email to her that she was “very disappointed that the tumor did not shrink and the pain was no better. Additionally a new tumor has appeared.
What I missed from our visit was some candid comments to me about the situation and the prognosis. From my reading of the CT Scan notes and the MRI notes it was clear to me there is a serious problem, and we didn’t get any kind of theory about why the radiation obviously didn’t do the job. If you do have one, I would like to hear it.
In addition, the mass in the left mid lung, according to the CT notes of 5/21/07, now “measures 2.1 CM X 1.9 CM in diameter, and is slightly larger than on the prior study.”
When I asked you about that you indicated that you didn’t get concerned over the increase until it approached 30 percent. Quite frankly that did not give me much confidence, since the CT notes of 5/12/07 indicated “The pulmonary nodule in the mid left lung field is stable at 1.3 CM X 1.7 CM.” The fact that the mass in the left lung has grown at all is as troublesome to me as is the fact that the tumors in the right chest area are larger now than when the radiation began. The T6 tumor is particularly worrisome since the notes from the CT scan of 5/21/07 indicate that is the area where “The most superior mass is seen in the posterior superior aspect of the right thorax, and blends caudally with a more medial soft tissue mass that appears to be destroying the right lateral aspect of an upper thoracic vertebral body(at the level of the carina) and possibly invading into the spinal canal. What that means to me as a simple layman in plain English is there is the danger of paralysis if the invasion into the spinal canal is successful. Please feel free to disabuse of that notion.
One of the other questions I had that didn’t get asked that day regards the MRI notes from 5/25/07 where on page 2 of the notes under “Impression,” the doctor who read the scans initially said, in part, “Large mass seen involving the posterior aspect of the right chest wall and does extend into the T5 and T6 neural foramen on the right, greatest at T6 with minimal epidural involvement. CT guided sampling could be performed for further definition.” No one down there even mentioned the possibility of CT guided sampling, what it does, what it would be good for or anything. Again, my ignorance doesn’t help in this area either since I have no idea of what it is. Please explain.
Dr. Carson, I know we have a serious problem, and I have known that for a long time now. What I find disconcerting is the fact that nobody will take the time to tell me what the hell is going on in language I can understand. Most of what I have figured out over the years I have had to do myself. I agree there are things that Joanie doesn’t need to know at the present time, however as someone who sees to her needs and wants on a 24 hour basis when she is not in the care of doctors, hospitals or clinics, I do need to know what I am dealing with. It helps me keep things in perspective for her when she wants to discuss what is going on. That is precisely that kind of active involvement that helped us dodge a couple of serious incidents last year, when if I hadn’t been aware of what to look for, the outcome of those incidents could have been serious indeed.
So, what I am asking is to give me some credit for some kind of intelligence and ability to handle what is a tough situation, and don’t keep me in the dark.
I know this has gone on at some length, but please bear with me since this the really important part of this letter.
Joanie told me at breakfast after we had left your office that morning that you had mentioned to her the word ‘hospice.’ I was obviously out of the room when you did that, and I was greatly disappointed that you did so. That may be what we are facing, however at this point that is more to deal with than she needs. The effect of that statement was indicated in what she said to me when she asked, “Do you think Dr. Carson has given up?” I responded that I didn’t believe you had, and that you were just doing what doctors do. It did bother her, and she thought about all the way home. By the way, I was not then, nor am I now, pleased about the use of that word at this point. It has been her spirit, hope and faith that has kept her going over these passed 11-plus years, and part of my job is see that they are kept in force as long as is possible. She has always had ultimate faith in you and what you have done for her during these troubling times, and I don’t want to see that faith eroded either.
The second time I heard her ask me that question was on the 19th of June when we were getting ready for the second gemzar treatment in the first cycle. Dr. Thomas told us that he had only received a letter from you about Joanie’s situation and her visit to Mpls. on the day before, that would be the 18th. We were waiting for the chemo nurses to call us in, and she asked me again, “Do you think Dr. Carson has given up?” This time I didn’t know what to say, since she was obviously upset in the timing of the letter, especially since we started chemo on the Tuesday following our Friday visit to the Cities.
I realize that you are a very busy doctor in a very busy metropolitan hospital, but I sincerely hope you will find time to respond to this letter. If it is easier, you can also email me at email@example.com, otherwise my address follows at the conclusion.
If you have read this far, I appreciate it, and just so you also know that while we were both a bit stressed after the trip down there we do appreciate what you have done over the years and are hoping to keep this doctor-patient relationship alive as long as possible.
Thank you for your consideration and I look forward to your reply.
Of course, there was more. I realized that after I had mailed the letter, I had failed to ask what I viewed as a critical question. So, the next day I sent this letter:
Dear Dr. Carson:
As per usual, I left off one thing from my previous correspondence that is of some importance. In the past when we have been down there, we were told by you or one of your nurses that Joanie should make an appointment for some time in the future depending on what was going on with her at the time. When we left on the 8th, we got no such instructions. No one told her or me when we you might want to see her again, so we were kind of left in the dark on when we should plan on coming down again. I know that usually we have been on a three month schedule, but that was when things were relatively normal. I’m not sure the current situation is totally normal and so don’t know when, or if we should come back down. I sort of assume that after the next scan you might want to see her. From my understanding talking to Dr. Thomas, he is thinking about scheduling one after the next chemo cycle which means the scan would be done during the last ten days of July.
As far as Joanie and the chemo is concerned she is handling it well. The first cycle went well without any serious side effects that caused any real problems. So far her hair is maintaining as are her spirits. She will start the next cycle on the 3rd of July. Her pain, though it has yet to go away, seems to be about what it has been for quite some time now. No better, no worse.
Again, thank you for your consideration, and I look forward to hearing from you soon.
Dr. Carson and I did talk from time to time after that, and she continued to be involved in Joanie’s care. All I had to do was call her gatekeeper, Marcia, and I could get through, or she would call me back.
It was that communication that was important to me during the next few months.