Options–more or less.
Hope is that rare thing that will not die, and when you are left with nothing else to hang on to, it is there to sustain you through the darkest of times.
In late February, 2008, we were hanging on harder than ever.
It came to be the absolute last attempt to find a treatment option that would help Joanie. We knew by then it would have taken a miracle to cure her of the disease, but at least the doctors were not giving up on trying to find some way of extending her life, as well as the quality of her life.
Dr. Thomas did write to Dr. Dusenbery at University of Minnesota Medical Center-Fairview. His letter to Katie was dated the day after we had met with him on February 20th.
“Dear Dr. Dusenbery:
“I am writing this letter and enclosing a recent CAT scan of the chest on Joan Wigen. Briefly, this is a patient you have seen in the past with a diagnosis of metastatic squamous cell cancer with evidence of chest wall mass, which has been evading gradually to the thoracic vertebras. The patient has been undergoing supportive palliative care. She was given third line chemotherapy until September of 2007 and since then has not been undergoing any chemotherapy but supportive care. She has had persistent pain and discomfort in the right chest wall, for which she has been on oral Dilaudid. She has been ambulating and continues to work at least 4 to 6 hours a day. She has had a CAT scan of the chest in September of 2007, and a repeat one on February 20, 2008. There is clear-cut evidence that the mass is increasing in size and now is destroying several vertebrae including T4, T5 and T6, and affecting the spinal cord. Surprisingly, this patient does not have any neurological deficits.
“I am sending the CAT scans along with this letter to see if she is a candidate for any further localized radiation therapy. Please let me know and I can make arrangements for this patient to see you. Thank you for evaluating her CAT scans.”
February 29, 2008
The last Friday of the month this year was the 29th of February. Not ordinarily a day that I would think a lot about. However, on this Friday, Joanie came home from her office, and it would turn out to be a date I would never forget.
Joanie had caught a ride home from somebody at her office, and I could tell she wasn’t feeling that good. Once home she did what she always did, and that was to get into her sweats, take up a place on the couch and wait for one of our cats to join her.
She didn’t ask for anything at first, but after a while wanted another Dilaudid. Seemed the pain and discomfort had been ratcheted up a couple of notches during the afternoon, and she was feeling it. She wasn’t hungry that night, but I did get her to at least have a Boost, and some 7-UP. For most of the evening, she stayed on the couch, often dozing off while pretending to be watching TV.
I remember, when I would go outside for a smoke, in the cold, dark night of our back yard, wondering to myself what was going to happen. It was hard not to imagine the worst, but at the same time still hold on to the hope that hinged on what Dr. Dusenbery might have to say.
Joanie seemed to get worse as the weekend wore on, spending more time in bed than usual, and we did increase the Dilaudid, now giving it to her every 2 hours as opposed to every 4 to 6 hours.
We didn’t have to wait very long to find out what Katie had to say. On Monday, March 3rd, I called Dr. Thomas to let him know what had been going on over the weekend, and he also told me he had talked to Dr. Dusenbery, and that radiation was not an option.
His notes from the conversation follow:
“Bob Kallberg called me on Joan Wigen telling us that over the weekend she was having more pain and the Dilaudid had to be increased to 12 mg every 2 hours. The Fentanyl patch was increased to 100 mcg. She was still having pain and 3 days ago she was in bed most of the time. She is feeling slightly better now with the increased Dilaudid and he was wondering whether there is any other option.
“In the meantime I did get a call from Dr. Dusenbery fromthe University of Minnesota after she received CAT scans. Dr. Dusenbery felt that these were areas that were already radiated and so radiation was not an option. She is not very sure about that. She said she will show the scans to a spinal surgeon. Other options also include Cyberknife. She did not think Cyberknife would be the best option. We also discussed about radioablative therapy as a possibility to help the pain.
“I did suggest to Bob that all of this was an option including a change in her medication to oral Morphine. Her doses would come out to be that she would be taking 144 mg of Dilaudid and that would be equivalent to nearly 570 mg of morphine sulfate. I did again tell Bob that epidural intrathecal morphine or Dilaudid would be an option. I would have to send her to a pain clinic for assessment. In the meantime I did talk to Dr. Herbal who said that he is willing to sit down and talk with Joan about the options of radiofrequency ablation. I did inform Bob that I am very concerned about the possibility that she could have paraplegia with this tumor going into the spinal cord. Pt. has been on Prednisone at 10 mg daily. I probably would increase the doses. Patient’s family does understand that this is a possibility. All of this was discussed at length and this was after several conversations with Dr. Herbal and Dr. Dusenbery.”
I could tell from talking with Dr. Thomas that he was making every effort to find something that would help, and I appreciated the difficulty he was having in finding something more satisfactory than he did. We both knew we needed a miracle right now, and as we all know, they are often in short supply.
After I finished talking to Thomas, I began to wonder how I was going to discuss this with Joanie. It took me a while to figure it out, but I finally found some time to sit down with her and lay it all out.
She had questions, as I knew she would, but I couldn’t supply her with any definitive answers. All I could do was to do my best to let her know what the options were as I understood them, and to let her know that she didn’t have to make up her mind right then about pursuing any of them. If there was more information she wanted from Dr. Thomas, I told here we could get it whenever she wanted it.
I suggested she sleep on it, and we would talk about it when she was ready.
When I went to bed that night, all I could think of that the hope that would not die, the hope we were so desperately clinging to, was slowly slipping away and there wasn’t a goddamn thing I could do about it.