Tuesday, Sept. 12 will mark 6 weeks since my surgery. I finally feel like progress is being made. I still have a long way to go and I’m not sure I see the light at the end of the tunnel yet, but now I feel like it’s actually out there somewhere.
The visiting nurse first came on Saturday, September 2. After doing a full evaluation it was determined that the only service I need is regular wound care (which I knew, but they need to do a full assessment anyway). But scheduling was complicated—it was Labor Day weekend and getting a nurse would be difficult over the holiday. I therefore scheduled the next visit for Thursday, Sept. 7 because I already had appointments with doctors and nurses scheduled for Tuesday and Wednesday. There seemed to be a lot of confusion about how many weekly visits I can get; most visiting nurse contracts are through Medicare/Medicaid and the nurse did not know what my private insurance would cover. But at least I was now on their schedule.
Last Wednesday I saw the surgeon in NYC. He once again debrided all the open wounds and prescribed yet another antibiotic—he saw evidence of a new bacterial infection likely due to the moist environment and all the drainage. He also instructed me not to try to dress the wounds myself. When a visiting nurse can’t come to the house, he wants me to go up to the MSK facility in Montvale and have one of the nurses dress the wound. I was much relieved at this because I still believed that it was beyond my ability to do this myself, and he validated my concern.
He once again reassured me that the healing was progressing; I just had to be patient. The abdominal wound and the right breast wound were doing well; the left breast continues to be a problem. But the big news—he gave me the OK to drive! This has made such a huge difference. I’m not going to take a road trip any time soon but at least I can run errands and go up to Montvale by myself. He also gave me the OK to walk the dogs, much to Lila’s and Gracie’s great joy.
At this point, I’m trying to ease into some semblance of normalcy. I dialed into a work call on Thursday; didn’t even turn on my camera but it was so nice to feel a part of my team again. I’ve found my energy returning, finally, and many days I don’t feel like I need to nap. On Saturday I attended my nephew’s wedding. Of course I was thrilled to attend, and managed to find something in my closet that covered all the bandages. I paid the price, though; it totally wiped me out for the rest of the day Saturday and most of Sunday.
Today I ventured out to the supermarket. Jon drove and pushed the cart, while I looked for easy to prepare foods. I’ve been depending on the kindness of family and friends long enough; I’ve got to take these steps to begin taking care of myself again. There are so many easy frozen or heat and serve foods out there, and now that my energy is coming back there is no reason why I shouldn’t make use of them.
So that’s the physical update. However, the emotional aspect of this has truly taken its toll. I’ve been angry, bitter, and dismissive. Many of you have reached out in kindness and support, and in some cases I rebuffed you. For that I am truly sorry. I’m tired and frustrated. Tired of this year of hell, tired of being tired, frustrated at being dependent on others, tired of asking for help. I really am grateful for all the support I’ve received, but sometimes, it’s all too much. I see the photos and hear of everyone’s great summer vacations, trips to the beach, the mountains, Europe, and I can’t help but become resentful.
I want my life back. Not my life from before August 1; my life before January 11. Although this blog is not, and was never meant to be, about my journey through grief, the paths have merged recently and I can’t ignore that. I had to redo my will, medical proxy, and power of attorney before going into surgery. I’ve had people ask, “Why can’t your husband dress your wounds?” I’ve had nurses confirm my emergency contact, and I need to correct them. I look at Evan’s photo, and our ketubah (Jewish marriage contract) which hangs in our bedroom, and I feel lost and confused that he’s not here. 2023 can’t end soon enough.
cisforchaya.com 