Being an advocate as well as a caregiver.
To say the last trip to Minneapolis turned out to be stressful would be a huge understatement.
To say that we were both disappointed at the results of the radiation, and perplexed when we left the meetings with Dr. Carson and Dr. Dusenbery would also be an understatement.
Nevertheless, on the Tuesday following that trip, Joanie began the Gemzar treatment. That consisted of one dose of Gemzar per week for two weeks, then a week off, and then the cycle would be repeated. After the second cycle. Dr. Thomas would order another CT scan to see where we were.
Joanie handled the first go round with few side effects. Outside of some mild nausea, she was doing well, and was spending the afternoons at her office, keeping herself involved in as normal a routine as she could.
I kept an eye on her, and for the first couple of weeks, couldn’t help but think about the disappointment surrounding her latest appointments with the two doctors who had been, and continued to be, so important a factor in Joanie’s cancer treatment over the last 11 years. The questions that we didn’t get answered, or that I didn’t have a chance to ask when we were down there, stuck with me, until I decided to renew my role as advocate for Joanie, and I sent an email to Katie with those questions. It was my attempt to gain some insight into what was really going on.
On June 20th, I sent this email to Katie:
“It was good to see you when we were down there on the 8th. We left there somewhat uncertain of what we had learned that day, except for the fact the feeling that all was not well. Joanie did grab on to your statement bout the difference between the CT scan and the MRI regarding the look of the lesions. As I understood it, you mentioned that while the CT measures density, the MRI look at the same area presented different appearance, as in dead tissue. I took that to mean some type of necrosis had taken place in spite of the fact that the lesion near the T6 had grown since the CT scan of 2/12/07 from 4.0 cm X 5.8 cm to approximately 9.0 cm X 5.0 cm (as measured by the MRI of 5/25/07).
“The question, which came to my mind, was how can something that is being killed continue to grow, especially something that has been subjected to the level of radiation that was given to Joanie over those three weeks. I rather got the impression that you were somewhat surprised at what you saw on the scans we brought down and were hard pressed to provide a concrete answer on whether the radiation had worked, didn’t work, or had partially worked.
“Referring to your email response to my questions in March, you did indicate that “Tumors will shrink slowly and the only way we will know it “worked” is 1) her pain will improve or disappear 2) the tumor will shrink (this will take weeks or months since the dead tumor cells need to be removed by the body and this takes time.” Well, the pain question is still unanswered as well, since my observation is that it hasn’t changed much at all in the past couple of years, and if by “months” you mean six months or more, and the rate of grown of the T6 tumor alone from Feb 12th to May 25th of this year continues, it seems to me that we still have a serious problem.
“Excuse me for making this email a bit long, however these are questions that have been dogging me since we got back. I rarely interject or interfere between Joanie and her doctors when we are there, for I think that it is important to hear as much from Joanie as is possible since she is, after all, your patient, not me. However, I am the one who sees to her needs and wants when she is not under care of docs, hospitals or clinics, and it has always been important for me to have an understanding of what is going on. This is the way for me to help her keep things in perspective when she wants to discuss what is going on.
“Currently Joanie continues to do well. She had the second Gemzar treatment yesterday, and now will have a week off from that, and then go through one more cycle. We started on the Tuesday after we got back from Minneapolis. It is my understanding that after the second cycle, that Dr. Thomas will be ordering another CT scan to check on any progress. According to my calendar the scan should be done sometime during the last ten days of July.
“Thank you for your patience, if you have read this far, and I hope you will be able to shed a bit of light on the questions I have raised.”
Katie got back to me the next day when I received this email from her:
“You are right bout the assessment of last weeks visit. Dr. Carson and I are very disappointed that the tumor did not shrink and the pain is no better. Additionally new tumor has appeared.
“There is the small possibility that the dead tumor cells have “swollen” and makes the tumor enlarge before it starts to shrink. If you do the MRI or CT scan during the “swelling” stage, sometimes it then gets smaller with a subsequent scan. The only way to know if this happened is to continue to repeat the scans.
“I remain hopeful that the tumors will shrink with the Gemzar and that it doesn’t take to much out of Joan. I think most patients tolerate it well.
“I wish I had better news for you. Joan has been through so much and I realize the radiation took a lot out of her last month. I am particularly disappointed that she didn’t have her pain go away. Please feel free to call or write if you have further questions.
“My best to Joan.
As a significant other of anyone who is going through the ordeal of fighting a life threatening disease, you wear two hats. You are both a caregiver and an advocate for the patient. The advocacy part of your job is as important as the caregiving part of your job. Being an active caregiver shows doctors that you are part of helping to take care of the patient, and being an advocate for the patient shows the doctors just how much you are involved.
Wearing those two hats, sometimes at the same time, made it easier for me to be able to communicate with Joanie’s doctors, and I can’t emphasize to much how important it was for my own peace of mind, as well as helping Joanie understand more clearly what was going on when she wanted to talk about it.
Both Katie and Dr. Carson were good about responding when I called or wrote, and it showed me how important, what I call, the triangle of care, (doctor-patient-caregiver) really is, and how helpful it can be even during the most difficult of times.