Susanne visits but spends the nights upstairs in the master bedroom. My sleeping patterns are still pretty erratic, and I’m often up during the night reading, praying, or computing. My steroid intake is now at 5% of the maximum, which may be a factor in this pattern. Time will tell after I get to 0% on Sunday and the drugs work their way out of my system. My work laptop was brought to me Monday when several of my work colleagues at Radix Wire brought lunch in (I’m a market development manager there). I am writing this at about midnight lying in my bed. I went to sleep at about 9:30 p.m. and am now wide awake. So now I’ll pick up the chronology.
I arrived home Tuesday, August 7 (20% max level of steroids) in the early afternoon. A contractor that installs handrails and bathroom grab bars came so that we could specify what we wanted on the various stairs and in the bath tub. (Those were all installed Monday August 13. Although I’ve been safely navigating all over the house without them, the rails make it easier and they will help others too.) That night I asked Susanne to setup the bathtub for me to take an Epsom salt bath. The tub is an air bubbler tub so I really craved the comfort that this might afford. I could tell that she was not thrilled with the request but agreed anyway. It was delicious. Just as I was getting out of the tub around 9 p.m. my friend Rick Eastburn arrived. I crawled into bed, and he sat in my room for about an hour with me doing most of the talking (this was uncharacteristic for how I used to interact with people). After Rick left, I begged Susanne to join me in bed, when she was reluctant, I became angry, started swearing, and actually threw some pillows. I could tell from her face that she was very frightened, so I immediately backed off my request. I’ll let her share in her comments about how all of this occurred for her.
On Wednesday, August 8 (still at 20% max level of steroids) we had an appointment to be measured for a custom-fit ASO brace for my leg. I stepped on the scale there. My weight had come down about 20 pounds…I’m actually now at the weight my doctor has been recommending for years…so all of my pants are very loose and I had no belt small enough to fully hold them up. We went and bought a 36” belt to replace the 40” one that I have been wearing for many years.
I then had my post-surgical follow-up visit with the surgeon, Dr. Sloan. We were expecting removal of the stitches and the results of the pathology report. Susanne had indicated that if the pathology report was clean she would be okay, but if not, she might not be in shape drive us home, so we decided to take a cab. The visit with Dr. Sloan had many parts:
- I highly commended him for being able to deftly divert my attachment to going home the Sunday after surgery (see Near Disaster Post Op). I had planned to stand and shake his hand but the nurse was deep into pulling out stitches.
- He indicated that the pathology report was not yet ready, and he would call us with the results when they came in.
- We asked if there was anything in my medical record regarding seizures, which would trigger a state law restricting my driving privileges for 6 months. He asked me to illustrate the leg spasms. When I did so, he classified that as a seizure and indicated that he was required to so note it in his records. I was crushed. This means no driving for me until mid-January 2008. It’s not completely clear that they had that notation in the record before we asked the question. I have loaned the truck until January to my friend Nik Tressler’s son, which I’m delighted with, but would far rather be driving it myself once rehab indicates I’m safe to drive.
- I requested a clear statement regarding hereditary links to provide to y daughters, Michelle and Leah. My notes indicate “No fully understood hereditary links would have predicted mine and David’s tumor.” Dr. Sloan has already been in the process of involvement with a proposal to look more deeply into hereditary factors and they will be requesting further information/testing from David and me if the proposal is accepted.
- We asked what we do so that both our family doctor and ourselves could get copies of the reports from the radiology, surgery, and pathology. He directed us to the Medical Records department to get a form to fill out.
- One of the events during the week at In-Patient Rehab that I chose to not mention there, because I planned to address it here in the narrative was that I got very hooked on RESCUING my son David from the anguish I perceived he was going through with his cancerous tumor. He completed a six-week radiation treatment the week I was preparing for surgery, and he is beginning chemotherapy the week of August 20. He was very tired throughout the treatment. I made very grandiose promises to him and his wife and got highly incensed over the fact that he did not have a written copy of his pathology report (which would have been available in early April). I built this up in my mind to be a key point of absolute agony for him. So my final anguished and tearful question to Dr. Sloan was whether he had any idea why my son did not have a written copy of his pathology report The Dr. indicated that David would have to request it through Medical Records, and he left the room.
We proceeded to the Medical Records department and picked up copies of the required form for our family doctor, myself, and David. I then proceeded to make a scene about immediacy in getting David’s report, demanding to see the supervisor of the department. Susanne got upset and left the room. I then insisted that we go by David’s apartment on the way home so that he would have the form urgently and immediately. She challenged me in the lobby of the hospital, but I couldn’t listen. Later in the day, I was able to hear Susanne quietly indicate that, for many people, a pathology report is too much complex information and not important when the actions to take in response to it are clear. It was me who desperately wanted the facts in David’s pathology report, not him. I initially struggled with accepting that all the facts might not be needed or useful to someone in this situation but I did GET IT eventually.
Thursday, August 9 (20% max level of steroids) started out without commitments so I made the suggestion that it might be nice to visit the Gathering Place, a local cancer-support center. It was immediately obvious from Susanne’s facial reaction that this was not a good idea. It was clear that she saw visiting there as only necessary if my diagnosis was cancer. However, after a few minutes reflection, she suggested that as upset as I’d been about David, it did make sense to go for support as his father. This was an excellent idea, and I left a voice mail indicating, “My son is currently undergoing treatment for brain cancer and I would like to come in for a counseling session to help me get emotionally unattached from trying to rescue him.” I had to try twice after saying this to leave my phone number because I was in tears. An appointment was set for 4 p.m. that day. We arrived a bit early so that we could tour the place. Our friend, Janet Lyon, who is a volunteer worker there, gave me a tour. It is wonderful. Particularly poignant to me is a hall of photographs with quotations from participants. There are powerful photos of our friends
Mary Bernstein, the counselor, came and found us in the library for the counseling session. Susanne and I had agreed that she would stay for the beginning of the session and then depart. She ended up staying for the whole session, which was fine. We looked in depth at my reasons for having gotten hooked on rescuing David, including my long-time guilt for not being present for him in his teen years. I got very clear that whatever I did with David, it was vital for those actions to be truly acceptable to him and best for him, not a “cavalry to the rescue” mission for me. It was agreed that I would speak with him as soon as possible and convey 1) The grandiose plans I laid out for them when they visited me rehab were largely the steroids speaking, and I was apologetically withdrawing them, 2) When I am taking no steroids I want to sit down with him and get very clear on how I can best support him (be the wind under his wings). Mary also helped us to talk a bit about the impact on our marriage of all that was occurring. We decided to eat out before going home and had a very pleasant and relaxed time. I came home with a new sense of serenity about David. I called him the next day and he wholeheartedly agreed to meet with me in a few days. I’m looking forward to it immensely!
3 comments:
The rest of the story…
Coming home day:
I awoke at 5 a.m. tense, concerned, and emotional, wondering what bringing Craig home would be like. I decided it would be good to go swim at the YMCA to work off the tension. A brief conversation with a friend there helped me to accept that it was okay to be a mix of happy and scared and that I could always take him back to the hospital if it didn’t work. She also said if I felt homebound and couldn’t come swim, she would be happy to sit with Craig one day a week so I could. Her kindness lifted my heart.
A severe thunderstorm and heavy rains hit during the morning, delaying my departure for the hospital. Once I left, I had to stop and buy Craig a special shower chair for our bathtub. I then carefully drove through streets filled with water to the hospital. I got Craig packed while the staff fixed problems with his discharge paperwork. It took long enough that we stayed for lunch.
As we left, Craig insisted on stopping to see where he would be doing outpatient rehab. They were without power/lights from the storm but took us on a tour. At the end, Craig needed to go to the bathroom, so we had to walk back to the far end of the facility again to get to one where there was a flashlight. Back over the ramps and stairs (which he’d just been learning to walk on!)… While I was in the bathroom after he was done, he took off. I raced back through the facility looking for him. Nowhere. I asked in the lobby if anyone had seen my husband. He was standing out at the car. I was very frank that while he was new at walking around, and I didn’t know his capabilities, that it absolutely did not work for him to just take off!
We then headed to the drugstore…no power. Across the street was another one that was in operation, so I headed in there and left Craig in the car. They didn’t have the right drug, so I had to call back to the hospital to ensure generic was okay. Then they didn’t have enough of it. Then they wouldn’t dispense the second drug that he had been taking in the hospital because the insurance company wouldn’t approve it for outpatients. They and I called the doctor for a substitute without success. They told me I’d have to come back the next day. I got very upset and said that right after brain surgery I wasn’t going to leave my husband alone to come get drugs. No one mentioned that they have a free delivery service (they called later). After an hour of this I finally got back out to the car to Craig, who was feeling very tired.
I got Craig settled in at home. But every time I tried to sit down, he needed something. “Dear? Dear? Would you do this?” By early evening I was exhausted. I had noticed that the tub hadn’t gotten scrubbed well enough for a bath when we put the new shower chair in there earlier. I decided it didn’t matter for a shower. When Craig asked for a bath I couldn’t say no, but my body was protesting (it’s a larger than normal tub). He needed help in and out of the tub. When Rick came to visit, it was a bit of a break. I could at least go upstairs for a little while.
After Rick left, I sat on Craig’s bed to talk for a few minutes. I was aware of feeling a lot of confusion about who this man was. Who was I now married to? He was different every day. Craig has always been very mild-mannered and calm…it’s part of the reason I married him. With the steroids, one of the things Craig began to do was swear—not always in anger, but just peppering his communications with swearwords. When I began to express my confusion and my reservations about getting into bed with him that first night, he got angry, demanding, and threw his pillows. He had this vision of a blissful home reunion, and I wasn’t cooperating. All of this was out of character. I had a moment of thinking maybe I should do it just to keep him calm and happy.
Suddenly Craig switched into his very super sweet persona and said he wouldn’t push me. I escaped to my temporary bed in the family room feeling like an emotional and physical wreck. I’m clear that if I had attempted to pacify him, it would have been a giant emotional step backwards in our marriage. During that night I also began to reflect on the high number of emotional triggers there were in Craig’s hospitalization and coming home. I had done the hospital scene many times with my former husband…for very different reasons (alcoholism, eating disorders, depression, and suicide attempts), but there were enough pieces of similarity in the experience that it contributed to my feelings of disconnect and confusion.
Visiting Dr. Sloan
The whole not driving thing was weird. I expected Craig to have some sort of response, and there was virtually none. I thought he might get mad at me, since I’d raised the issue of wanting to know his driving status. There was no recognition that his not driving was going to have a large impact on both of us.
It was so hard watching Craig go through sudden personality shifts. I confronted him in the lobby of the hospital after he was at Medical Records and said that his insistence that David immediately get his pathology report was all about Craig needing information, not about David. He couldn’t hear me. I decided it was just one more thing that was going to have to wait to be discussed when the steroids wore off. I was surprised when he brought it back up later in the day and could listen better.
The Gathering Place
This was my second visit there, as I’d been in to talk to the librarian and checked out books on brain tumors for Craig before the surgery. These books helped him to understand what he was going through. Unfortunately, they also fixed certain things in his mind as he headed into surgery. A key one was a lot of concern about chemotheraphy and what his son David was about to go through. NOTE I don’t recall anything new about chemo coming out of seeing those books. With the help of the counselor we were actually able to have some discussions about some of the irrational ways he was behaving about David that I thought would have had to wait for the drug doses to lower. It was also helpful having her affirm to him that the stress of these weeks was affecting our relationship and he needed to pay attention to that. It was then great to go out on what felt like our first date in a long time.
Anonymous is actually Susanne...we had a technical glitch.
Please ignore the next two comments after this one (draft posted accidentally instead of final copy).
The rest of the story…
Coming home day:
I awoke at 5 a.m. tense, concerned, and emotional, wondering what bringing Craig home would be like. I decided it would be good to go swim at the YMCA to work off the tension. A brief conversation with a friend there helped me to accept that it was okay to be a mix of happy and scared and that I could always take him back to the hospital if it didn’t work. She also said if I felt homebound and couldn’t come swim, she would be happy to sit with Craig one day a week so I could. Her kindness lifted my heart.
A severe thunderstorm and heavy rains hit during the morning, delaying my departure for the hospital. Once I left, I had to stop and buy Craig a special shower chair for our bathtub. I then carefully drove through streets filled with water to the hospital. I got Craig packed while the staff fixed problems with his discharge paperwork. It took long enough that we stayed for lunch.
As we left, Craig insisted on stopping to see where he would be doing outpatient rehab. They were without power/lights from the storm but took us on a tour. At the end, Craig needed to go to the bathroom, so we had to walk back to the far end of the facility again to get to one where there was a flashlight. Back over the ramps and stairs (which he’d just been learning to walk on over the two previous days!)… While I was in the bathroom after he was done, he took off. I raced back through the facility looking for him. Nowhere. I asked in the lobby if anyone had seen my husband. He was standing out at the car. I was very frank that while he was new at walking around, and I didn’t know his capabilities, that it absolutely did not work for him to just take off!
We then headed to the drugstore…no power. Across the street was another one that was in operation, so I headed in there and left Craig in the car. They didn’t have the right drug, so I had to call back to the hospital to ensure generic was okay. Then they didn’t have enough of it. Then they wouldn’t dispense the second drug that he had been taking in the hospital because the insurance company wouldn’t approve it for outpatients. They and I called the doctor for a substitute without success. They told me I’d have to come back the next day. I got very upset and said that right after brain surgery I wasn’t going to leave my husband alone to come get drugs. No one mentioned that they have a free delivery service (they called later). After an hour of this I finally got back out to the car to Craig, who was feeling very tired.
I got Craig settled in at home. But every time I tried to sit down, he needed something. “Dear? Dear? Would you do this?” By early evening I was exhausted. When we put the new shower chair in the tub earlier I had noticed that the tub hadn’t gotten scrubbed well enough for a bath. I decided it didn’t matter for a shower. When Craig asked for a bath I couldn’t say no, but my body was protesting (it’s a larger than normal tub). He needed help in and out of the tub, too. When Rick came to visit, it was a bit of a break. I could at least go upstairs for a little while.
After Rick left, I sat on Craig’s bed to talk for a few minutes. I was aware of feeling a lot of confusion about who this man was. Who was I now married to? He was different every day. Craig has always been very mild-mannered and calm…it’s part of the reason I married him. With the steroids, one of the things Craig began to do was swear—not always in anger, but just peppering his communications with swearwords. That evening, when I began to express my confusion, exhaustion, and my reservations about getting into bed with him that first night, he got angry, demanding, and threw his pillows. He had this vision of a blissful home reunion, and I wasn’t cooperating. My confusion increased… I had a moment of thinking maybe I should do it just to keep him calm and happy.
Suddenly Craig switched into his very super sweet persona and said he wouldn’t push me. I escaped to my temporary bed in the family room feeling like an emotional and physical wreck. I’m clear that if I had attempted to pacify him, it would have been a giant emotional step backwards in our marriage. During that night I also began to reflect on the high number of emotional triggers there were in Craig’s hospitalization and coming home. I had done the hospital scene many times with my former husband…for very different reasons (alcoholism, eating disorders, depression, and suicide attempts), but there were enough pieces of similarity in the experience that it contributed to my feelings of disconnect and confusion.
Visiting Dr. Sloan
I’m a nursing school dropout--largely due to how easily I get queasy (and I was 17!). Throughout the time at the hospitals, I carefully ducked out or closed my eyes for anything that looked like drugs, blood, or needles. However, this time there was no avoiding the matter. The nurse removed Craig’s stitches (with me looking the other way), but then insisted I learn how to take care of the incision on his head for the next few weeks. Twice a day dabbing with water/hydrogen peroxide until it heals. However, I’ve done okay. Craig’s been calling me Nurse Susie, and he hasn’t had to pick me up from a faint yet!
The whole not driving thing was weird. I expected Craig to have some sort of response, and there was virtually none. I thought he might get mad at me, since I’d raised the issue of wanting to know his driving status. There were no comments or apparent recognition that his not driving was going to have a large impact on both of us.
It was so hard watching Craig go through sudden personality shifts. I confronted him in the lobby of the hospital after he was at Medical Records. I pointed out that his insistence that David immediately get his pathology report was all about Craig needing information, not about David. He couldn’t hear me. I decided it was just one more thing that was going to have to wait to be discussed when the steroids were out of his system. I was surprised when he brought it back up later in the day and could listen better and discuss it.
The Gathering Place
This was my second visit there, as I’d been in to talk to the librarian and checked out books on brain tumors for Craig before the surgery. These books helped him to understand what he was going through. Unfortunately, they also seemed to fix certain things in his mind as he headed into surgery. A key one was apparently a high level of concern about chemotheraphy and what his son David was about to go through. With the help of the counselor we were actually able to discuss some of the irrational ways he was behaving about David. I had thought these would have had to wait for the drug doses to lower. It was also helpful having Mary affirm to Craig that the stress of these weeks was affecting our relationship and he needed to pay attention to that. It was then great to go out on what felt like our first date in a long time.
Note: Please ignore the draft comments that follow this posting.
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