Their words sucked the air right out of the room.
The trip back to Bismarck from the January 21st surgery was a typical one. We stopped in St. Cloud to see my sister, Joni and bring her up to speed on the news that we knew at that point. Then we stopped in Fargo and met my other sister, Jane and did the same for her. These were stops we would make with frequency over the coming years. It broke up the trip for us, and it gave us a chance to vent. It made the trip a bit longer than we could have made it, but that really didn’t matter. We would bring her brother and sister up to date when we got back to Bismarck.
On the drive back, Joanie and I didn’t talk much about what we had learned, nor did we speculate on what the where the next step in this journey was going to take us. We long ago had agreed that speculation was futile, and it was especially so since we had no idea of what she would be presented with when we next appeared at the Women’s Health Center on February 3rd.
Back in Bismarck, while Joanie went about her life at work and with friends and kept a positive outlook, I went back to the computer and back to research, wanting to find out as much as I could about what Dr. Carson was now calling recurrent cervical cancer. What I found gave me some pause, and I realized that she was now facing a difficult fight, and one that would not be an easy one. I chose not to share some of my concerns with her, seeing no reason to worry her anymore than she already was. It was my job to find out as much as I could so that I could help her understand what was going on if she had any questions. If she didn’t have any questions, I didn’t offer anything.
After we got home, we had about 12 days until we had to be back. Those days flew by, and before we knew it, it was time to hit the road again. This time, even I didn’t hurry in the morning we were preparing to leave. As I had told Joanie times before, we didn’t have any appointments today. It was going to be a short trip, just overnight on Monday, meet with Carson on Tuesday morning at 9:00, and depending on anything she might want to have done, head back to Bismarck afterwards.
We stayed at the Radisson on campus, to be close to the clinic since it was an early morning appointment. After we checked in, we met Ginny and Ed for dinner at the Lexington on Grand Avenue in St. Paul and despite the uncertainty surrounding this visit, we had a great evening. They always did their best to make her feel okay.
Tuesday morning dawned, and though we were up early enough, she dawdled much as she would do on the mornings when we were preparing to leave Bismarck for a clinic appointment. I didn’t care, since the clinic was so close, and if we were a bit late it would not be a big deal. Chances are whenever we got there we would have to wait anyway, so I was in league with her on this day’s dawdling.
We descended the three floors down to the clinic, and while I went for coffee for me and orange juice for her, she checked in at the desk, and then we waited. The waiting room there had become familiar grounds for us by this time, and we would see familiar nurse’s from time to time as well. This was not the kind of familiarity we had ever thought we would be comfortable with, but there it was.
One of Carson’s nurses came to the door and called Joanie’s name, and down the hall we went to the examining room and the meeting we were dreading. This time the nurse just checked her weight, took her blood pressure and left us, saying, as they always do, “The doctor will be in shortly.” At this point it was my cue to once again amuse her to release some of the tension that was evident. I did so, I must say, exhibiting a modest talent for improvisation, using items lying about in the room. I would get a smile from her, with that look that always told me I was being silly.
There came a rap on the door followed by the entrance of Dr. Carson and Dr. Jonathon Cosin. I sat down, and after we all engaged in some small talk for a brief period, Carson got down to business.
She basically went over what they had discovered from the January biopsies, and CT scan, and then began to tell us what the options were for further treatment. While the cancer was still limited to the cervix, had not spread, and there was no apparent lymph node involvement, she told us that further radiation was not an option because that area had been heavily radiated before. She also told us she didn’t think chemotherapy was appropriate at this time either. Joanie welcomed that statement.
Carson then brought up what they said appeared to be a viable option for treatment, and that was a total pelvic excenteration. She could have been speaking a foreign language when she said that, because neither Joanie or I had any idea of what the hell that term meant. We were about to find out.
The words that came out of their mouths next, sucked the air right out of the room, as Joanie and I sat in stunned silence, just barely grasping what they were saying.
They went on to explain in great detail what was involved in what could only be described as very major surgery. I thought of it more as a horrible surgery. It would be surgery that would last upwards of 12 to14 hours and would involve the removal of her bladder, vagina, rectum, uterus, cervix and ovaries. They would also take her appendix while they were in there for good measure. The next step would be the creation of what they called a continent urinary diversion, also known as a “Miami Pouch.” There would also be the creation of a ileostomy that could be taken down at a later date when her bowel would be hooked up again. They would also use part of the colon to create a neovagina.
Carson went on to say that this procedure is one that is not done that often, but they did more of them than most hospitals in the country. She also told us that not everyone with recurrent cervical cancer would be a candidate for this procedure. She said as radical as it is, it is meant to be curative. That word is one we hung on to, and only later find out that is also a relative term.
The Miami Pouch would be created, and would be internal. It would act as her new bladder, and she would have to use a catheter to empty it from 3 to 6 times a day for the rest of her life. The ileostomy, which would be outside her body, hopefully would be temporary, and that after a sufficient healing time, they would take it down, reconnect her bowel and she would have a normal function in that area.
By now, it had dawned on me what Carson had alluded to that day in January when she mentioned something to me about cleaning out her pelvis, and it was not what I thought it would be.
I looked over at Joanie, and she had this look on her face that told me the enormity of what they were telling her was so powerful it might crush her spirit completely. She sat there, twisting the Kleenex she held in her hands until it was in shreds, as she looked down at the floor, unable to speak for a moment. She didn’t cry, but her face went pale and she looked at me as if to ask, “What is happening to me.” All I could do was put my arm around her and squeeze her shoulder. I had never felt so helpless to protect or comfort her.
When she did start to talk, her voice was soft and barely audible, and the first thing she asked Carson was when they wanted to do the surgery, if she agreed to do it. Carson told her they would temporarily schedule it for the 12th of February, just 9 days away. Joanie said, with a sad smile on her face, “So soon?”
Carson and Cosin ask us if there were any questions, and Joanie asked if they were sure this was the only viable option. They said given her current situation, the answer was yes.
Joanie told them she would need some time to think about it, and with that, she thanked them both, we left the clinic, walked back to the Radisson, checked out and headed back for Bismarck.
What we heard that day was so overwhelming that it was hard to get our arms around it. It was by far more overwhelming than that day in May, 1996 when she had been diagnosed in the first place. It was incomprehensible, frightening, and I felt so sorry for her that it hurt.
Nothing much was said on the long ride back. The only thing you could hear in the car was the music of Chuck Mangione’s, “Chase the Clouds Away.”