I'm tired

Today was the long day of treatment. The first day of each round is the hardest because we have to arrive at 7:30 and we don't normally get out of there until about 5:00. Which means we also have bumper to bumper traffic coming home.

The first four rounds John felt okay (other than being very tired) through each treatment day and did not start to feel really bad until the day following his last infusion. However, he started feeling bad on the very first day of Round Five and he felt very bad all day today. I could see it on his face and asked if he was okay. He admitted that he felt very bad and I told him I didn't really have to ask. His expression always tells me what I need to know. On the up side, in spite of how bad he feels, he was hungry and able to eat a sandwich from Jersey Mike's after we got home. I'm thankful he is not suffering that debilitating nausea.

Dr. Flinn said that he was pleased with how well John had tolerated treatment. Many patients have to stop after four rounds because they just can't take more chemo. Their counts drop very low and don't recover. So treatment has to end. He said that the way John's counts have bounced back indicates that his bone marrow is strong. And I'm thankful for that.

While Dr. Flinn was examining John and feeling the still-present nodes, I spontaneously addressed the outcome of treatment. "With John's nodes still being the size they are after five rounds," I asked, "there's really not much chance of a complete remission, is there?" And he said, "No." He was very upbeat and didn't show any personal disappointment. He just matter-of-factly stated, "But if we can just keep the nodes this size for a significant length of time, I will feel like we got a good outcome from treatment." He also said that it probably won't be necessary to do another bone marrow biopsy because the nodes will already demonstrate the absence of a complete remission.

I'm surprised that I feel so let down tonight. We went into this knowing it was more likely that John would get a partial remission than a complete remission. And I know that he could stay in a partial remission for a long time. But I have prayed and many others have prayed that God would give us better than expected results; a complete remission and a complete response in his lymph nodes. And at this point in time, it does not seem like that is God's plan. If in the next thirty days John's nodes all shrink to less than 1 cm, it will be an obvious miracle. And I will shout it from the rooftops to God's glory if that happens. But so far He has not answered our prayer for complete healing.

I want to be very clear on this: there is not one shred of doubt in my heart or mind that God CAN heal John's body completely at any time if He chooses to do so. And I have gone through this treatment with a hopeful and positive outlook. But I've been down the cancer road up close and personal before (with my mom). And I've seen lots of people lose their battles in spite of all the many prayers that were being said for them. And I know God doesn't always heal us physically. In fact, a Christian CLL online friend that has been very inspiring to me over the past two and a half years lost his CLL battle last week. Despite our prayers, he developed a secondary cancer and began a steady decline. So while I believe deeply in God's power and ability to heal miraculously and completely, I also know He doesn't heal everyone's physical body. And trying to convince myself that a certain outcome IS God's will just makes me feel like I'm setting myself up for a fall.

I feel especially this way today. I have quietly dared to believe that, because of all the prayers, John's nodes might be normal again by the end of treatment. And even if every single one wasn't reduced to less than 1 cm, that they would be much smaller than they still are. So I'm disappointed because this is not the outcome I hoped for. But my faith in God's ability to heal has not been diminished. I know that God has a plan and His plan is not always what I would choose. In spite of my disappointed heart, I still trust God and know that His plan is best and there is a purpose. But it's still hard. And sometimes watching John go through this feels like more than I can stand.

However, to me faith means trusting God and accepting His will no matter what His will is (especially when His will does not line up with my personal desires). Faith is surrendering my will to His and saying from my heart, "Your will be done; not mine. My life is in Your hands to do with what You will, when You will, how You will..."

It's strange how emotions hit you randomly. I got through the day fine. I was fine when we left Sarah Cannon. But as I drove us home in the dark and John's eyes were closed, my eyes filled with tears and I felt momentary despair. Although he never complains, I'd seen the expression of misery on his face all day and I felt overwhelmed. Silently I told God from my heart that I couldn't hardly stand to see John go through this and I even asked the question "Why? He's such a good, kind man. He's already been through so much in his life. Why does he have to go through this too?" But then I reminded myself, "You have to surrender your will and your questions."

I don't know about other people, but I have more peace when I don't try to be in control of my circumstances or claim that I know God's will. I have more peace when I willingly surrender my plans to His. God knew John was going to develop CLL. It wasn't a surprise to Him. He knew it when He brought us together just prior to John losing Brittany. He knew John was the man I needed and that John would also need me. It is through God's mercy that I have John at all. As we merged onto 440 this evening, I told John, "I'm so sorry you have to go through this, but I'm so glad I'm with you." He said, "Not nearly as glad as I am." And I assured him he was incorrect about that.

I am so thankful that God allowed me to be in John's life and walk this path with him. I consciously focus on that when I'm feeling down (as I have been tonight). In spite of the rollercoaster of emotion and the times I just want to cry because I feel sad or afraid, I truly am so very thankful.


Randy Shannon said…
Hey Shari,

The long days are tough, and managing our expectations can be tougher.

You and John are in my prayers.

God Bless,

Shari said…
Thanks, Randy. I'm praying for you too. You have been through so much more than we have. And you have always been such an encouraging "voice" -- always exuding faith and humor despite your challenges. I hope I can go through this experience the same way.
suezquesteen said…
Oh, Shari, it is such a defeated feeling, I know. You know, God IS in control of how this will all be used to His glory. I feel such sadness as I'm reading because, I think, I can so identify with that worn out feeling of exhaustion and disappointment that things aren't as you had hoped. This is the time to trust...this is the time to just "be" and experience the grace that comes from simply being in a relationship with a wonderful loving father.
You and John are precios people--he must be, or you wouldn't be with him. I am praying even now that God will give you both peace with having chosen to go the route you've chosen and with the outcome--whatever it may be. Stand, sweet sister, for you are surely not standing alone.
I do love you, Shari.
suezquesteen said…
And did I mention...Keep that positive attitude going! Words are powerful to bring life...let's speak words of joy, power, and celebration over this situation that God knew you two could handle.
Shari said…
Susan, I love you too! It's a wonderful thing to know that you are never standing alone. And I am literally surrounded by people who care for me -- even in my online communities! I feel much less melancholy tonight. Sometimes it helps me simply to share my thoughts. Blogs are great for that, as you know. I was telling a friend this morning in an instant chat that I prefer to express myself by writing rather than verbalizing my low moments. It helps me to process things and get back to being thankful when I write. And when I talk to a friend, I don't want them to feel that they have to know what to say or "cheer me up." If I need to unload the cares of my heart, I am more likely to do it here. And my heart is truly lighter today.

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