Being the Caregiver

The role of a caregiver involves many things. Some of the responsibilities I have assigned to myself include:

Researcher, fact-gatherer, sponge (for absorbing all information related to the CLL journey of my spouse), patient advocate (protecting my husband from unnecessary exposure to radiation, contrast, possible wrong treatment choices, and any medical personnel who might forget that my precious patient has only one precious kidney, which has to be protected from unnecessary harm), treatment companion (not just for emotional support but for facilitating constant hydration by keeping that water bottle full), interpreter (sometimes translating information that I understand better because of all my reading), supporter, encourager, consoler, pray-er. And the "roles" I am trying most to refrain from: Worrier, stresser, projecter. (These activities help no one.)

In my last blog post I addressed the realization of my fearfulness. At that moment, I was thinking primarily about my fear of other people and my fear of being a hypocrite. But as I reread that post this morning, I thought about some of my other fears. Will the treatment work? Is John's CLL going to be the aggressive kind? Will he be resistant to treatment? Will he ever feel good again? Will he tolerate the treatment well? Will he get serious infections? What if he doesn't achieve a complete remission? What if he comes out of remission too soon? And I don't even need to spell out the rest of my fears and anxieties. I'm sure you can imagine the scenarios I have to battle in my mind sometimes.

For the most part, I have gotten better at living in the present and not projecting into future uncertainty. But I would be lying if I didn't admit that there are days I feel overwhelmed with anxiety. Up until the beginning of treatment, my anxiety was about the decision to do chemo now and the ramifications for John of that decision. Once the decision was made, that anxiety went away. I did see the overwhelming evidence of the need for this treatment. I was surprised at how positive and upbeat I felt going into this new territory. I felt certain that John was going to respond well and tolerate the side effects well. I didn't feel emotional that whole week.

Then the weekend of round one, John was really sick and I went from feeling strong to feeling weak and completely helpless. It's hard to watch someone you love suffer and not be able to do a thing to end it. We got through that weekend and started seeing some real improvement in John's lymph nodes. I had not expected them to go down that fast and it was exciting. I was feeling really good about the treatment at that point, and so was John. That lasted one or two days, and then his neck started getting bigger again. That felt like a punch to the gut. What does this mean? It was not only discouraging to me, I could tell it was discouraging to John. He is so resilient and upbeat, but he looked at me and said, "What if this doesn't work? I wonder what I'll do then." I reminded him that Dr. Flinn said we would consider doing a stem cell transplant if he came out of remission too soon. So I assumed that would be the next step if treatment failed. And then I said, "But I think we may be reading too much into this. There is a reason there are six rounds of treatment. This may not be a bad sign at all. It might be very common."

We saw Dr. Flinn Tuesday and asked him about the nodes. He said that obviously he would prefer to see them go down and stay down, but some people experience "waxing and waning" of their lymph nodes in the early rounds of treatment. It's not that uncommon. I felt a little bit better, but not much.

Last night I thought his nodes looked like they had gone down a little bit and I felt excited (again). I think John was too tired and perhaps a bit reluctant to get excited. Which I completely understand. But I'm thankful for any encouraging sign.

Living with cancer (which is treatable but presently incurable) is at times an emotional roller coaster. Probably more so for someone like me who feels every emotion so deeply and intensely. One of my online CLL friends made the observation that I have really gotten into John's skin and am going through all of this right along with him. It's true. The weekend following his first treatment, when he was so sick, I literally had sympathy nausea a couple of times. I just felt these waves of nausea come over me that I knew had no origin other than compassion. I never mentioned it to John because I didn't want to put the focus on me, but I knew it was emotionally induced.

I had one of those nights last night when I woke up and never went back to sleep. I prayed for everyone I could think of, including John of course. He was coughing so hard from his reflux that he wasn't sleeping either. This morning he said that maybe he would just have to stop eating dinner. I suggested that maybe he could leave work at 5:00 so he could eat dinner earlier. And he of course replied, "I can't do that."

My sweet son called me yesterday to check on me. I've been pretty fragile this week and my voice has cracked several times on the phone. I told him that I was feeling much better yesterday than I had been feeling previously. I said that since I'm fragile one day and fine the next, some of my fragile days must be the result of the physical changes associated with my age. I have been blaming my hormones for my emotions for many years. Maybe it's just being a woman. And then he reminded me, "You have a lot going on." Yeah, maybe I need to cut myself some slack for being emotional. I was glad he said that. I tend to be very hard on myself for my emotions. I feel like I shouldn't be the way I am. I wish I could be more stoic sometimes. It's not that I admire stoicism. But it seems like it would be easier than feeling everything so intensely (the way I always have).

Despite the (at times) raging emotions and my very real stresses, I don't feel sorry for myself at all. I am constantly aware of my blessings and I recognize I have not scratched the surface of some people's challenges and/or suffering. I feel God's presence. I know He hears our prayers. I know He loves us and His grace will be enough for us in anything we face. I recognize the opportunity to grow in the midst of difficulties and that God has increased my compassion for others BY allowing me to experience difficulty, challenges and even suffering. I don't feel entitled to a perfect, trouble free life. But I'm human. There are ups and down, good days and bad days, tears.

Today I am really tired from not sleeping, but I feel fine. Whenever I wake up in the middle of the night, my thoughts always go to how blessed I am. I have thanked God for the blessing of John and our happy marriage many, many times in the middle of the night. I am so thankful that I am his wife, his patient advocate and his caregiver for this journey. Nobody could love him more or care for him better. That I know. I would rather that he didn't have to go on this journey. But since he does, I'm so glad God allowed me to be by his side. If God had sat me down and given me all the details of our future together, I would have chosen these details because they include John. I'm so glad God chose me to go through this with him. I know there are many other caregivers who feel exactly the same way.