“What you don’t see with your eyes, don’t witness with your mouth.”
The day after I had laid out the options, as I understood them, for Joanie, we talked, and she told me she didn’t want to do any of them. I was dispatched to talk to Dr. Thomas, which I did. He gave me new prescriptions for Dilaudid and Duragesic (Fentanyl patches), and told me that she should call if she does not improve. That was on Tuesday, the 4th of March.
Joanie had come home from work on Friday the 29th of February, and I could see how tired she was. That didn’t improve, and her appetite did not improve either. All I could do was watch, encourage her to eat anything solid, and keep her full of liquids.
I hadn’t sent out any email updates on her condition since we got the news in late September about stopping chemotherapy. Mainly that was because, through October, November and December, Joanie continued to work, and was as busy as she wanted to be, or physically could be. There were plenty of people she came into contact every day, and they could see for themselves how she was doing.
January and February were the same. She continued to work afternoons, and maintain control of what pain she was enduring, and again, anyone who came in contact with her could see how she was doing.
Then, after she got home on the 29th of February, she wasn’t leaving the house. I began to field phone calls from friends inquiring after her condition, and trying my best to give them an accurate picture.
As a caregiver, there will come a time when the rumor mill will drive you nuts. For me that time was approaching. It wasn’t the first time rumors ran rampant regarding Joanie’s situation. In 1998, rumors had her dying after she came back from the exenteration surgery. However, now the rumors contained some real misinformation.
I was, as I always had been, focused on taking care of Joanie’s needs on a daily basis, and I never really worried about how all of this was perceived by anyone else. As far as I was concerned, my only job was Joanie, and seeing her through these, the darkest days of this 12 year journey. I still hadn’t sent out any emails regarding how she was doing since coming home on the 29th. Apparently, for some, this amounted to me not doing enough.
I was unaware of these rumblings, until my good friend Wayne Tanous called me and I met him to talk about what he was hearing. I was dumfounded at first when he was telling me what he had heard. My first thought was, “Jesus Christ, don’t these people understand what we are dealing with here.” I was talking to Dr. Thomas on a frequent basis, and I had talked to Katy Dusenbery in Minneapolis, and Dr. Carson as well. Everything that could be done was being done, and the stress of these days was mounting, and I didn’t think I needed to be worried about what other people were thinking or saying, as well as taking care of Joanie’s needs.
I was pissed, but as Wayne told me, they just want to be brought into the loop. I knew he was right, and I knew that many of Joanie’s friends were concerned about what was going on with her since they hadn’t heard or read anything since last September, even though she had only been home for less than two weeks.
I had sent an email to her brother Dick in San Francisco on March 11th, in which I outlined everything I knew at the time. and I added, “I haven’t sent out updates as I once did, because most people, outside of a few would come unglued, and this is difficult enough without having to deal with other people’s misconceptions about what is going on. I don’t include you in that group.”
When I sent this rumor squelching email to Cathy Rydell, I prefaced it with the following comments.
“Here is an email update I sent out today. I know I told you one of the reasons I hadn’t sent out updates since last September was that people would come unglued. Well, it was happening, and I thought that rather than let the rumors fester and get all blown out of proportion that I had better sent out something that explains just what the hell is going on. This is the result.”
Email from March 13th.
“Greetings to one and all, and please excuse the mass mailing approach. Under the circumstances it is the easiest way for me to communicate with a large number of Joanie’s friends who are no doubt hearing rumblings of the current situation, and I want to make clear to everyone just exactly what is going on. Part of what follows is an explanation that might be considered somewhat technical by some of you, and I have made an attempt to place each of those items in context in parentheses following the item. A good share of this is what I sent to her brother Dick the other day.
“So here is the situation as it stands on Thursday, March 13, 2008. Joanie is resting comfortably on the couch where she had been since Saturday morning. She found that she sleeps better there than in the bed. I called Dr. Thomas Monday and had them get an oxygen concentrator sent over so that is helping with the breathing difficulty. I also found a Foley bag in a drawer in the bathroom this last Sunday, and got that hooked up so she doesn’t have to go through the stress of trying to cath her Miami pouch, and that seems to be working, even though I do have to irrigate regularly to keep it open due to the mucus that builds up.
“She still has no appetite, and I have great difficulty getting her to take anything solid. She does have several Boosts during the course of the day, but as I told her, that is hardly enough for her to regain strength even though the Boost is good for her. On Tuesday night and Wednesday night, I did get her to eat some semi-solid food in the form of mashed potatoes and gravy Tuesday, and pasta shells with lots of butter and some pistachio salad on Wednesday night. She continues to resist any such other solid foods, but we keep trying.
“The results of the CT she had on February 20th showed results that are not encouraging. The list of the radiologist’s conclusions are as follows:
- Increased level of disease throughout the chest. (This incudes an increase in the size of the nodule in the left lung which had remained stable for some time.)
- 3.5 cm left upper lobe mass (This is an increase of 2.2 cm from the September 2007 CT. This is what was called a “solitary pulmonary nodule some years ago when it was first discovered.)
- 5×9 cm upper right lobe mass (This is compared to 4×5.2 cm from September.)
- Multiple rib metastasis with destruction and associated mass.
- Vertebral body destruction in the T4 and T5 and to some degree at the T6 level. (this is also worrisome for paralysis as it is encroaching on the spinal column.)
- Right pleural effusion. (Probably source of some breathing difficulty.)
- Probable metastatic disease involving the right kidney. (There has been no follow up on this issue, and the only thing Thomas told us was that it was a suspicious mass, but given her present state, it is doubtful we will know anything about that for some time.)
“I did have Thomas send the CT and notes to Dr. Dusenbery in Mpls. and I talked to Katy a week ago Monday (That would have been March 3rd). Katy is the head of therapeutic radiology and radiology/oncology department at the U of M, and has treated Joanie several times over the years, so she knows her case well. She told me that the problem areas involving the T4, T5 and T6 vertebra was smack dab in the middle of the area that has been radiated once, and so that is out of the question. She also indicated she thought that any back surgery would be far to risky for the limited benefit that it could bring, something Thomas and I discussed as well last Tuesday. Thomas indicates to me that since the tumor also involved the right chest wall, there was a real danger of internal bleeding and other complications that could kill her on the table. Needless to say that was ruled out.
“Other options for relief were also ruled out because the benefit was minimal compared to the risk and the discomfort. So, the long and the short of it is that we are plum out of options.
“I haven’t sent out updates since the last one I sent last year, mainly due to the complexity of the issue and the opportunity for confusion and misunderstanding. I’m hoping this email will make clear exactly what is going on at the present time. I know you are all concerned, but please do not panic at this point. It is critical to be sure, however the task at hand, as it has been for 12 years now is to see that Joanie is getting the care she needs, which she is, and is comfortable, which she also is.”
“After some experimenting with the pain meds, we have found a comfortable level of dosage, and the pain is now under control. The oxygen concentrator is helping out, and on one good note on Wednesday afternoon, while we were in the process of changing her clothes, she stood up from the couch, unaided by me for the first time in about 12 days. I liked that.”
“Wish I had a better report, but there it is.
“Thank you all for your concern and prayers.”
The same day, I got a response from Wayne that said “Good job. This was what was needed at this point in time.”
Joanie never knew anything about this. There was no reason for me to trouble her with this information. The only thing I ever told her was that I was doing my best to keep her friends informed about what was going on with her. She was satisfied with that.