I still knew where the popsicles were.
When I got to the hospital on Tuesday morning, Joanie was awake, and feeling better. The tension I had seen in her face the night before was gone. I think it melted away when they moved her into her private room. She was relaxed, however pain was still an issue.
They were still having trouble with the pain management aspect of her treatment. She was on Dilaudid, a very powerful pain med that is a derivative of morphine. She was getting that through the IV, but on Tuesday they discontinued that, and she was getting Dilaudid orally. They also would give her a bump through the IV when she needed it. They were also using a Fentanyl patch, another potent pain killer. They had calculated how much she needed of each one to manage the pain without getting to much of one or the other.
Those two strong pain meds, the ongoing effort to raise her potassium level and lower her calcium levels, along with the daily radiation treatments were all conspiring to keep her groggy, and subject to frequent napping during the day. It would not be unusual for her to drop off mid sentence when talking to me, or for her to ignore me completely. That was okay, I never took it personally.
I accompanied her down to radiation for her daily treatment, and on the way down she told me there were only four more to go. She was looking forward to Friday, and to going home, even though that wasn’t a sure thing. It would hinge on the progress they made in dealing with the hypercalcemia and the hypokalemia.
If you don’t know, ask.
Being a caregiver requires that you not be hesitant to ask questions of the doctors who are treating your patient. It is good for your own peace of mind, and it also shows the doctors there is someone else who is involved in the care of the patient. I think it also helps you, as a caregiver, help the patient see things clearly, and avoid confusion.
On the Friday at the end of the first week of treatment, I had written an email to Dr. Dusenbery regarding the radiation treatment, and how progress is measured.
“Just a couple of questions as usually I have been with Joanie to ask the questions she doesn’t remember to ask, or she wouldn’t understand and remember the answer herself. She did tell me this morning that the treatments do not change over the three week time frame. The question I have is how do you measure the effect of the treatment on the lesions over the period of a week. I imagine the first week is not all that significant, but I’m interested in hearing some of the specifics as to the measurable progress, especially in terms of size, etc. Over the past few years I usually would get copies of the radiologist’s notes following CT scans, PET scans or MRIs and have been able to follow the development in a manner that has allowed me to make some sense out of them.
“So, would you, or someone in your office be able to get that type of information to me? I know you are very busy and have many patients. I however, have only one, and it has been my job, as her husband for the past 11 years to keep on top of what is going on.
On the following Monday, I received a response from Katie:
“We give the tumor the same dose every day. I am giving 250 rads (or 250 cGy each day and will give a total of 3750 cGy when all 15 treatments are over. The tumor 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. The pain is the thing we should notice first. Last week she really hadn’t had any improvement, so I increased the pain medicinea little and will see how she is early this week.
“My plan will be to have her back for scans 6-8 weeks after completing the radiation (or have scans there sent to me)
“Hope this is helpful.
That was helpful, but I will also admit that the business with “rads” and “cGy” were like Greek to me, but it did confirm that the strength of the dosage, as Joanie had told me, would be the same for the whole three weeks. The information about the pain also was helpful, in that it gave me something to watch for as well. The rest of the measurement by scans would have to wait.
After Joanie’s radiation treatment that day, she was tired, and when she got back to her room she promptly dropped off to sleep. I had decided to get a room at the Radisson for the next few nights, assuming we’d be leaving on Friday, so I went back to the Sagsveen’s and retrieved my bags, and all of Joanie’s clothes and her laptop and checked in around 4:00.
After I stopped up to Joanie’s room for a while, and she dozed off, I left and walked over to Sally’s for a burger and a beer. It gave me a chance to make some calls to Ginny, and her brother Richard and sister Ann in Bismarck. I also called Mikey Hoeven and a few other folks in Bismarck to bring them up to date.
Walking back to the hospital, a walk I had taken so many times before, I thought about her in that bed, and wished there were someway I could make this all be right and I could go there, make her feel better and take her away from here and bring her back home where she belonged. That’s what I thought, but I knew….
When I got back to her room she was awake, watching something on TV. Pain was still an issue, and her appetite was still almost non existent. We sat there for a while, and she asked me if I could find her a cherry popsicle. We hadn’t been on 7C in four years, and I didn’t know if things had changed, so I went to find out.
I didn’t have to look very far, I found them in the same place they had been the last time we were there. It was nice to see some things hadn’t changed. I took the popsicle back to her room, and we split it. She didn’t want the whole thing. She just wanted something cold and sweet on her tongue.
As she got ready to drift off again, I said good night, and walked back to the hotel. Tomorrow was another day.