Not my plan

For months now I have been waiting for June 5, 2014, because that was the day that I was supposed to talk to my doctor what to do about my medication.  I don’t like my medication.  It takes away my drive and intensifies my feelings.  I don’t cope well.  I have done research and know that other patients have similar complaints.  I also have done research enough to know that there are many anti-seizure meds that cause different reactions in different people. I have talked to both my neuro-oncologist and my neuro-surgeon.  They both have said that I would not have to be on Keppra once Tabitha wasn’t sharing my medications anymore, which is now the case, and that I would need to talk to my neurologist.

Between the weather, traffic, trying the get my MRI for my doctor, and misjudging how long things would take, we missed my appointment and were told that we would have to re-schedule. I could wait to talk to Dr. Reilly or I could talk to her PA (Physician’s Assistant) in an hour about changing my meds. I opted to talk to the PA.

So, my doctor’s plan is over an eight week period she will start me on a new medication and then wean me off the Keppra.  She wanted to prepare me because I will be taking two anti-seizure medications at the same time. The transition will be difficult and I may not want to start the process at the same time as starting chemo.  I was also thinking of CIY and VBS in the next eight weeks. To be make life harder right now was not appealing. (And if you want to skip the next two paragraphs all I do is rant about the PA).

Kevin asked if we could wean me off of the Keppra and not start a new one like we have done before. The PA said that we don’t do that within a year of surgery.  (But we did last time). Kevin asked if we could do a smaller dose of the Keppra since we have done that previously.  The PA said that I am on a small dose and we don’t prescribe smaller doses. (Did she miss the fact I have been on a smaller dose before?)

So her solution to my lack of drive was to put me onto an anti-depression medicine and encourage me to talk to a counselor.  She said that I would know my own body about when to switch medication, but when I told her the Keppra was causing the depression, she said that I was looking for an easy answer to a problem that doesn’t have easy solution.  I could rant more about other frustrating things like her wanting to prescribe even more medication and implying that my other doctors don’t know what they are doing, but I think you get the point, we were not happy.

So we left that doctor’s appointment frustrated and went to the next doctor. He asked what the plan was about the Keppra, and I summarized the conversation with the PA. He said that you don’t need to go through all that. He recommended that we see a new neurologist.  He hopes I can get in to see him within a week or two. We also decided that we will probably start chemo in first week of July unless he finds a clinical trial.

So once again, I remind myself that even though we do not feel like we have a good plan, nor do I know how to pray, God does and I place myself in his hands.

Romans 8 says:

26 In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; 27 and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God.28 And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. (NASB)


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