It was the morning of June 2nd, and Joanie’s appointment with Dr. Carson was scheduled for later in the morning. We had a chance to walk from the Radisson on campus, over to the Bruegger’s Bagels for a fresh bagel and cream cheese and a good cup of coffee.
Joanie was less tense this morning. Seems that the evening with Ginny and Ed had taken some of the edge off of what she was feeling when we got to the Cities. We had shared with them the good news/not so good news results from the PET scan, and Joanie chose to focus on the good news aspect. It was like she was playing spin doctor, and trying to put a good face on it for them. She didn’t ignore the not so good news, but she just said it was working, and there was still some work to do, and that the chemo appeared to be working. Which, when you look at it that way, it was, despite the three trips to the hospital.
As we sat a Bruegger’s that morning she began to speculate on what Dr. Carson might do about changing the chemotherapy. It was her opinion that she would just take one of the drugs out of the mix, and it would likely be the Ifosfamide (Ifex). She really didn’t have a good reason why it would be that one, and neither did I, except that was the drug Dr. Thomas wanted to take out when he first wanted to change the regimen and she had objected.
We got refills on our coffee, and she then told me she wanted to go to Macy’s in downtown before we left to go home. That was a sign to me that she was not only feeling better, but was going to keep as much control over her life as she could regardless of the dictates of the disease she was dealing with.
The walk to the clinic from Bruegger’s is not a long one. It was one we had made any number of times over the years. Today it seemed shorter, and while she was curious about what we would hear, she was not as anxious as he had been for the last couple of days. It made me feel good to see that as well.
Joanie hadn’t seen Dr. Carson for six months, probably as long a time between appointments as there had been in ten plus years. We checked her in, and when her name was called we went back down the familiar hallway to one of the many examining rooms we had been in before. Bev, one of Dr. Carson’s nurses was one we were both familiar with, and there was some comfort in finding a familiar face. Bev knew Joanie’s case probably as well as anyone down there except the doctors.
We had left the PET scan CD and notes where we checked her in, and expected Dr. Carson would have a chance to look them over before she came in to see Joanie. We were right.
When Dr. Carson came in, Joanie was relaxed and smiling. I think she was glad to see her after all this time. Carson chatted with Joanie, mostly small talk, for awhile, then got down to business. She was also interested in what had happened following the first three treatments that had put Joanie in the hospital and in the ICU. She had Dr. Thomas’ notes, but wanted to hear from her patient as well. We gave her the short version, which seemed to satisfy her.
After she did a physical examine, and Pap smear, Carson told us what she was going to recommend regarding the chemotherapy treatment. She wasn’t going to drop one of the drugs, instead was going to reduce by 25 percent the dosage for all three. Her reasoning was they had no idea of which drug was the culprit that caused the problems that put her in the hospital.
She was also going to put her on Cipro full time to deal with a urinary tract infection. Seems that was the culprit that caused the latest problem, the one that ended up with her going into septic shock. She said she was going to order a urine culture prior to each treatment to determine there is no infection present prior to her receiving her next three treatments.
Carson also ordered a PET scan to be done at the conclusion of the next three treatments, and told us to schedule an appointment following the PET. That would put us into sometime in September.
All in all, Carson said she was pleased with what she saw on the scan, but also acknowledged there was still work to be done. So we left her office feeling cautiously optimistic about what was to come. After all, the chemo had done some work already, and we assumed it would do some more, even with the reduced dosage number.
The doctor knew what she was going to do.
I had written a letter to Dr. Carson in early May regarding a conversation we had on the phone relative to how progress was going to be measured following Joanie’s first three chemotherapy treatments of the scheduled six. Turns out I needn’t have bothered.
When I had talked with her, she told me they would compare the PET/CT scan from May 30th to a CT scan taken back in January. I questioned her about that in my letter to her, suggesting that a PET/CT scan done in February would be a better comparison, for reasons I outlined in the letter.
We met with Dr. Carson the morning of June 2nd, and delivered to her the CD of the PET scan that had been done in Bismarck, along with the radiologist’s notes from the scan. She proceeded to compare this one to the PET done in February.
I didn’t asked her if she was doing it because of my questioning letter. It occurred to me she had planned on doing that all along. When she had talked to me in late April, it appeared she merely said CT scan instead of PET scan, and that had caused the confusion in my mind, and had precipitated my letter.
I learned something that day, and that was when doctors talk to patients, or caregivers, they often use terms in a manner that can confuse the listener, but are clear to them. That is also why it is important for a caregiver to take good notes, and when confusion does come, to question the doctor. If nothing else, it shows the doctor or other medical professionals your patient is dealing with, that you are paying attention, and are taking an active part in your patient’s care.
Her shopping foray at Macy’s concluded, we pointed the car towards I-94 and the ride home. Joanie was now totally relaxed. She knew there was work to be done, but felt quite positive about it, as uncertain as the process was that she faced when, next week, chemotherapy resumed.