The Emotional Rollercoaster of an Emotional Caregiver

The sky is not falling. I'm just dealing with a lot of stress and so much emotion. I am actually a very strong person and very resilient. But occasionally my emotions take a dive. And they have tonight.

I have learned that sometimes you just need to cry. And that's what I've been doing. Most people would just go to bed and get some rest. But I have always needed to pour my heart out. I need to say, "I'm hurting!" And so I'm here on my blog, I'm releasing emotion. And then I will sleep.

I posted on Facebook that I felt overwhelmed and I got many comforting responses right away.
This was one of my favorites:
"From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I." -David, the psalmist of Israel
(Thank you, Larry! I needed the reminder.)

My mother-in-law is receiving treatment for her CLL (chronic lymphocytic leukemia).  And she is doing well, by the way. I took her for treatment today and sat with her for several hours while she was being infused. By now I have spent lots of hours in the treatment room. First with John and now Marian.

When we arrived, I saw a sweet little older lady I first met two summers ago while John was undergoing his first treatment. She was being treated with chemo for multiple myeoloma and wasn't doing well at all. She was so weak, could not eat, and told me back then that she was about to give up. I felt so instantly attached to her and I asked about her after that. The next time I saw her (about a year ago), she was in remission and looked much better. She said she was hoping for a year in remission. I saw her again this morning. She still looked good (much better than the first time I met her). So I asked if she was still in remission. She said no, she wasn't. And she told me the doctor had told her there weren't any treatment options left for her. She was there because she was being treated for a blood clot in her leg. Despite her grim prognosis, she was smiling and telling me that her daughter is getting married in a garden ceremony this weekend. Just about that time the research nurse came up to talk to Marian and I needed to listen. So I excused myself. I had planned to come back to the conversation, but I saw her get up and leave with her husband and daughter while we were still speaking with the research nurse. I wish I could have hugged her before she left. It is very possible I will not see her again. It bothered me.

Marian's treatment was uneventful. She did have a pretty sharp increase in her white count today (from last week). But that is a common occurrence with CAL-101 in the first several weeks. Things should level out in time. I sat with Marian in the treatment room until John arrived for his appt. at 1:30 and then I left Marian to go into the exam room with John.

John is doing fine and still responding well to CAL-101. Prior to the CAL-101 trial, however, John failed chemotherapy (FCR). And at that time Dr. Flinn brought up the subject of stem cell transplant. Transplants for CLL are risky and not always successful. Even when they are, there can be some very serious side effects and complications. Some patients don't make it and some relapse within a few short years. It's generally thought of as a last resort option. And the transplant itself is grueling. So when CAL-101 worked so well for John right out of the gate, I very intentionally put the scary thoughts of transplant out of my mind entirely. I assumed we would not be discussing it again as long as John continued to respond to CAL-101.

Well, Dr. Flinn brought up the subject today. I wasn't expecting that and it caught me off guard. He is just being a good, thorough doctor. Since CAL-101 is not a proven drug over the long haul, he is of course wanting us to have a back up plan and not wait too long. He stressed that some patients don't get good results because they wait until they're in such bad shape to go for the transplant. And not only do I understand his perspective, I respect his professional opinion. He is one of the best CLL specialists in the country. But I wasn't prepared to revisit that subject today. I have been trying to enjoy the fact that CAL-101 IS working right now and not allow myself to think about the "what ifs" of it not working. To be honest, when I allow myself to think in those terms, I feel the fear creep back into me and it can be overwhelming. I have done really well not to let myself think about things like lymph nodes coming back and having to change course in treatment. And I didn't want Dr. Flinn to make me think about that today.

I cried in the parking lot just from having the subject mentioned.

The truth is, I have been feeling kind of fragile this week. I take my caregiving role very seriously and sometimes I internalize a lot of emotion while being strong where I need to be. I have been worried about my mother-in-law's progression and treatment. And I have been worrying about John's sister, who has been battling cancer of the head and neck for over a year. She has been through so much. And now she has more cancer and is facing more surgery and radiation. I've known for the last couple of weeks that she and her husband would be here tonight following a consultation at Vanderbilt this afternoon.

What Lillian has been through makes CLL look like a walk in the park. And now she has more cancer growing on the outside of her chin, as well as in her lower jaw. She lives in Evansville and it looks like she will receive the next course of treatment here in Nashville. Next week she will have surgery and a biopsy of the cancer to determine if it's the same or a different cancer than she initially had. Pain management is going to be part of her treatment, as well as more radiation to hopefully shrink the tumor. Trying to remove it surgically would entail removing a lot of the lower part of her face and extensive reconstruction. She is still weak from her previous surgeries and has not fully recovered. So seeing her tonight and hearing all of what she is still facing hit me pretty hard. I tucked her in and told her how much I loved her. And then I just came downstairs and cried. Everyone else is in bed. But my heart is just aching.

For those of you who read my Facebook posts tonight, I hope this gives you a little more perspective on my day and my emotions. I don't know why I am this way, but I have a need to cry out when I'm in this much pain. And by crying out on Facebook, I got the reminder I needed (to cry out to the Rock), as well as a lot of comforting words from people who wanted me to know they love me! I needed both.

Thank you for your prayers. I will be a new woman in the morning.


Shari, I am so sorry to hear you are having a difficult day. I have been a caregiver and I know what you mean "emotional rollercoaster". I lost my husband of 37 years in June to kidney cancer. I have CLL and I am facing treatment (FCR)in December. I read your blog almost everyday and draw so much strength from you. I feel like I know you. I know trying to be a caregiver to one love one can be overwhelming and taking care of your mother-in-law and trying to emotionally help your sis-in-law must be terribly difficult. I hope I can brighten your evening by saying you are an amazing woman!!
Shari said…
Jan, thank you so much for this comment. I know you can relate to this, since you've been in the caregiving role ... I do not feel amazing. I feel so inadequate. I was just explaining to my husband that what I want more than anything is to be selfless, to not even think of my own needs in any of this. But the truth is that I need emotional support too. When you are trying to give it to so many, your own "tank" gets low. Your words gave me much comfort this morning. Thank you.

I haven't really done that much for my sister-in-law (other than trying to be an emotional support). Her husband is so amazing and so attentive to her every need. I told him yesterday what a good man he is and how much we all appreciate him.

Right now (for me) it is just the heavy emotion of seeing someone I love in such a difficult struggle. I saw my sister-in-law this summer (we went to visit her in Evansville) and it was hard to see the changes then. I was not prepared for how much worse she's gotten. I also put myself in my mother-in-law's position (mentally) and I can't imagine how rough it must be to watch your child going through this.

There are so many layers of caregiving in all of this; physical and emotional.

But your words gave me a lift. Thank you so much. Please keep in touch and let me know how your treatment goes.
Brian Koffman said…

Having been through a failed transplant for CLL and facing another, my emotional advice is to avoid the highs and lows as best as possible. Don't get all excited with a good lab or scan and all depressed with a disappointing one. It is a long long long haul, and unless one of these experimental drugs is really the breakthrough we are all hoping for, then most of us"younger" patients will need a transplant to live to be very old.

Stay strong.

Shari said…
Thank you, Brian. I realize the wisdom in what you're saying. The emotional part is the biggest challenge for me. The transplant is so scary to me. I have just enjoyed not thinking about it since John began CAL-101. I am very realistic in knowing that there are no guarantees it will work forever. But I have really enjoyed the "intermission" of a good response to something. And I am so very hopeful it will continue.

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