Dispatches from TransplantLand: Day +15 (Hallelujah and Happy New Year)

Every Thursday morning at 9:30 is the caregiver support group meeting in the family lounge. I've gone twice already, and I plan to go again today, even though this episode in my life is probably coming to an end. I'm not sure why I go to the meeting, as I don't expect to get emotional support from a group of strangers and a social worker, but I believe in taking advantage of every opportunity offered, so I go. Besides, they have fruit and pastries. The last two weeks I haven't eaten anything, since I've always just had breakfast, but today I eat a cinnamon roll to celebrate day 15.

Many topics are discussed at these meetings. I usually sit back at the beginning and let everyone else talk. Today there are about 5 people besides the nurse who is running the meeting. Then there is an opening, so I bring up a topic that has been on my mind. I point out that in all the patient materials, the discussions with nurses and PAs, even the group meetings, there has been no mention of the emotional and psychological aftereffects of this process. I say that my sister's transplant process has gone relatively smoothly, but that I have urged her in advance to get professional help with what I assume will be something like Post Traumatic Stress Disorder (PTSD). OK, that might be a bit extreme, but it's been a long, stressful experience, and I know I'm expecting to have some aftereffects. I can't understand why there is such a gaping hole in the patient communications. Actually, I can understand, because I've felt from the beginning that patient communications is a weakness of the program, but that topic is dealt with elsewhere. I expect to leave today, and I expect that my first feeling will be that I'm able to exhale after holding my breath for 3 weeks. I want to emphasize that Beth's transplant went as well as could ever be expected, but even so, there was the feeling of being on-call 24/7 and the anxiety that something life-threatening could happen at any moment. There was also the emotional impact of walking into that clinic every day and seeing patients who were so much worse off. It was impossible to keep this thought out of my head: some of these people might not make it. And I was going to go home, back to my life, and not living with the patient through the 3-6 month recovery period. I couldn't imagine what it would be like to be one of the spouses (which were the majority of the caregivers I met) going through the transplant process and then never getting to go off duty. The ABMT staff needs to help the patient understand that this is more than just a physical process.

The nurse running the meeting acknowledged that this was an important issue. In fact, she had recently been to a conference about the psychosocial aspects of cancer survival (or something along these lines--I didn't write it down) and it was a particular interest of hers. She acknowledged that a lot of cancer survivors and even caregivers experience depression months after treatments are over. She promised to write up some material for the patient binder about these issues. I offered to proofread, critique, or whatever would be helpful when she put some material together and gave her my email address. I hope I can help make this a better experience for patients and caregivers, even in a small way.

After the meeting, I went back to the recliner in the clinic where Beth was waiting for her catheter to be removed. Although she had had a low-grade fever the night before (a little over 100), and her white count had dropped a slight amount, she was going to be discharged. We should be out of there around noon. A nurse went over the discharge instructions with us (which, by the way, varied from the written instructions in the binder, and also some things other nurses had said the day before). Then the PA arrived and said it was time to take out the catheter. He asked if I wanted to come and watch. Hmmm...that hadn't actually been on my agenda. He said mostly the caregivers do come and watch, so, I had to succumb to peer pressure. You know me, always going along with the crowd. It occurred to me much later that this was a procedure that was done in a closed examination room away from the main treatment area, so it was probably a protection for the practitioner against any sort of accusations of impropriety.

Removing the catheter consisted of clipping the sutures that held the tubes in place and then counting to three, inhaling and exhaling (the patient, not me) and then the PA pulling the tube out of her chest. Beth described the experience as a very intense stinging sensation, but only lasting a second. Then the PA kept pressure against the wound for a minute or so, bandaged it up, and gave us a handful of bandaids for later. These things apparently heal up extremely quickly. Beth wanted to keep the tube to take photos for her blog. The PA put them in a baggie and instructed her to use gloves to take it out and soak it in bleach before touching them. She promised to be careful, and I know she will because she's really been conscious of bacteria since being immunocompromised. With that, we were on our way.

Saying goodbye to the nurses and other staff was somewhat bittersweet. Most of the other patients were finished for the day and had gone back to their apartments. It really reminded me of going home from summer camp. We had spent a lot of time in this place, with these people, and it had become very familiar. It was weird to think about not coming back here tomorrow, as much as I was looking forward to going home. Of course, there are no goodbye hugs in TransplantLand. Too many germs.

On the way out of the clinic we stopped to make her 4-week follow-up appointment with the doctor. They'll do tests to make sure that the chemo has definitely killed off the cancer. That's when we'll know how successful the transplant was.

Back at the apartment, I went for one last swim before eating lunch and finishing packing the car. A friend of Beth's came to pick her up and helped me load my car and then we drove off in our separate directions.

I had mentioned to Beth that a few days earlier that Thursday would be Rosh Hashanah, the Jewish New Year. I thought it was a symbolic day to be released from the hospital with a new immune system, to be starting a new phase of life, hopefully in complete remission from the myeloma.