142 Days, Beginning Round 2 of Chemo and the Rhythm of Hope

This week was re-evaluation for Travis’ PT and OT therapy. We received some very good news. Travis’ skills and abilities have maintained what they were a month ago. That is pretty phenomenal considering that when you have a seizure, it is almost like starting over again. So, the exercises that we do at home and the therapy he receives at Moffitt have allowed him to maintain and not lose any ground in that area. They have decided to increase Travis’ physical therapy to twice a week. So, we are back to being at Moffitt three times a week.

Things have pretty much remained the same. Most things seem to be messaging issues. Some days he is clearer mentally than others but not a great difference, just a little less confusion. Some days the tremors are barely there and some days they are fairly constant. There seems to be no rhythm or reason as to why the days are what they are, I guess that is just the nature of brain tumors.

The goal of maintaining skill and ability at this point is our best expectation. If and when we reach a place where the tumor stops growing, that would still be the goal. There may or may not be any improvement in this area. Reality is that the tumor is still there, invading areas and has caused damage.

This week, Travis will start his 2nd round of the phase 2 chemo (the increased dosage amount). Due to insurance issues, we are having to start a day later than usual. (I will explain more about that later.) The chemo is supposed to have a cumulative effect, so we will wait and see if there are any symptoms this time.

Travis was able to do a little fishing on Friday. No luck catching fish but he seemed to enjoy it. On Saturday, we attended a beautiful wedding for a very special couple that we were privileged to have relationship with over the last year. We took it easy the rest of the weekend.

My frustration with the insurance issues seem to continue and then new issues have seemed to arise with other government agencies. It is so hard to get a live person to talk to anymore. After spending 20 minutes on the phone Friday, punching buttons through an automated menu, I was finally told I would be connected to an operator. I just about cheered. Once the call rang through, I received another voice message that stated that they were experiencing a high call volume right then and I would need to call back later. Then they hung up on me. At that point, I felt like sitting down in the middle of the floor and crying. It makes me feel like there are people making choices and decisions that affect my family and yet they do not know us and I never get to able to speak to anyone to get an explanation. While my head would tell me that God is in control, I sort of wonder what He is doing right now. I have spent quite a bit of time trying to make sure that we access everything that we can in order for our family to weather this season financially. When decisions like this get made, it throws me and the worry sets back in. I then scramble to try and get answers and find ways to make sure that over the long haul our family is financially stable. These are little things but on top of everything else it is almost insurmountable from an emotional and logistical standpoint. If you would please pray that God step into these issues and resolve these and keep things steady in these areas.

I mentioned last time about my grief and despair. A few days after that post, I read something in a book called, “Shattered Dreams”. In this book, the author uses the life of Naomi in the story of Ruth. Naomi has lost her husband and both her sons. She is returning to Bethlehem but she is broken and bitter and much of that is directed towards God. This is what the author says about despair:
“Naomi’s unlikely journey to joy has begun. Happiness has been taken away, replaced by despair. That’s the first movement in the rhythm of hope. The next movement begins unseen. Slowly, sometimes not for years, it becomes visible…God is working when we see nothing but darkness. He is moving with rhythmic purpose through our agony and pain to unimaginable joy. Knowing that He’s moving at all sometimes becomes the central piece of faith we need to keep ourselves moving. The courage to not quit, to not settle for immediate pleasure that brings happiness back for only a moment, often depends on our conviction that God is moving, that we are being taken to an experience of ecstasy along a path of suffering, that there is no other way to get there.”

Those words were hard to read. They are still hard to read, harder to type. I have been sitting with those words for about a week now. It is not that I do not believe it but I am struggling to see in the middle of darkness. I am struggling not to define God’s movement in how I want to see it. He is the only One who knows the rhythm of hope, not I. He is the only one that knows the way through agony and pain to unimaginable joy. The fact that I can say, unequivocally, that I am in the middle of despair and that darkness that it brings at least allows me to see that whether I can tell it or not, I am in the first movement in the rhythm of hope.

121 Days and the End of Round 1, Phase 2 Chemo

Friday night, Travis took his last dose of chemo for this round. We have 24 days and then he starts round 2. He seemed to handle this round pretty well. No nausea or vomiting. The biggest side effect being fatigue but even then, I did not notice a big difference between his normal fatigue and now. He seemed to have more tremors in his extremities with this round, whether that was related to chemo or messages from the brain, I am not quite sure. Everything seems to remain about the same.

I think that I am learning on some level to filter my expectations. A good day is just a good day. A bad day is just a bad day. That alone has seemed to make things a little easier when I am not trying to read into everything that happens.

Travis had a neuro-psychology re-evaluation on Thursday. The psychologist told us after the testing was completed that nothing that was going on with Travis right now was psychological. It was all related to either tumor or radiation. Travis is not angry, worried, scared, upset or agitated about anything that is transpiring. He is really good with everything, simply because he does not understand the seriousness and depth of what is happening. Again, I feel that this is God’s grace and mercy for Travis right now. Anything that we are going through emotionally, Travis is not. On some level, that makes me very happy for him.

This has also confirmed and helped me to realize that the memories and things we do right now are for us, not necessarily for Travis. We need to do the things with him that we need for ourselves. We need to do those with no expectation of his response or his memory of the situation because there most likely will not be one. We need to do them just for the pure pleasure of making a memory with him that WE will not forget.

We have a moderately full week coming up. We have an Internal Medicine (they manage the steroid-induced diabetes and blood thinner) appt on Monday, PT on Tuesday, OT on Wednesday. We continue to do exercises at home, sometimes once a day, occasionally we can get them done twice a day but not often. It seems that there are never enough hours in a day or I never have enough energy to accomplish everything. So I do what I can do and I let the rest go. A new season for me but one that has been necessary for my sanity.

So many of you ask me how I’m doing and then before I can answer, usually sheepishly say “That is probably a dumb question.” It is so hard for me to put into one or two words how I feel. I also know that when you ask me, you genuinely want to know. For this reason, I never answer “fine” to those questions. But I also struggle to answer this question. Sometimes just because I do not want to talk and sometimes because not even I, on a good day, can untangle the snarl of emotions to get to an answer.

I can tell you that this situation is re-defining quite a bit for me regarding faith, God and my relationship with the Trinity. Not any of the foundational tenants of faith but those things that we as Christians seem to have adopted or re-definied through the years in order for us to “manage” our relationship with the Trinity. There have been other situations in my life that have caused me to question God and faith but nothing on this level. While I can unequivocally tell you that I had faith and a viable relationship with the Trinity before this, it seems paltry in comparison to where I feel God might be taking me. Everything is being re-defined and yet it is not complete. My old definitions have been shattered but the new definition has yet to take form.

I am learning that relationship with Trinity is messy at its best and on most days, I will not understand them. That is unnerving on many levels for me. It takes away many of the beliefs that we have added that portray God more as a genie in a bottle instead of someone that the Bible describes as being a mystery.

It was recently pointed out to me in a book (Shattered Dreams by Larry Crabb) that I was reading, the bipolar opposites listed among the people in Hebrews 11. The people that God chose to name as having extraordinary faith. Most of us focus on the people in the first 2/3 of the chapter but the book pointed out that the very last part of the chapter talks about those people who were not delivered from their enemies, who did not get the deliverance that they prayed for. They were commended for their faith even though they never saw their deliverance here on earth. Apparently that pleases God as well. People who suffer terribly and their lives never seem to turn aright yet they continue to keep trusting.

In that chapter the author also talk about Jesus’ suffering in the Garden of Gethsemane and what He endured of our behalf. The author then offers these words. Words that he believes Jesus would speak to us in the midst of our pain and suffering where our definitions and dreams are being shattered.

“Some of your fondest dreams will shatter and you will be tempted to lose hope. I will seem to you callous or worse, weak–unresponsive to your pain. You will wonder if I cannot do anything or simply will not. As you struggle with with dashed hopes, you will fail, just as my servant Peter did. You will feel discouraged with yourself to the point of self-hatred. And I will seem to withdraw from you and do nothing.

When all this comes to pass, My word to you is this: Do not lose hope! A plan is unfolding that you cannot clearly see. If you could see it as I do, you would still hurt, but you would not lose hope. You would gladly remain faithful to me in the middle of the worst suffering. (It strikes me as ironic here that Jesus actually did know the plan and yet still suffered and anguished emotionally.) I guarantee you the power to please Me, not to have a good time. But pleasing me will bring you great joy.

In the deepest part of your soul, you long more than anything else to be a part of My plan, to further My Kingdom, to know Me and please Me and enjoy Me. I will satisfy that longing. You have the power to represent Me well no matter what happens in your life That is the hope I give you in this world. Don’t lose it!”

These are the words that have resonated in my heart over the last week or so. Words that I am trying to let settle and take root and maybe become part of some new definition. Also, the truth that He has placed within me the power to represent Him well in the middle of this shattering….even in my questioning.