Month 5 Update
As of today, I am officially finished my month 5 regimen and on treatment break until May 1. I am happy to be finished such a difficult month, and am grateful to be feeling pretty well. As I read through my journal entries of these past few weeks, it is hard to believe it was really me who wrote them. I share them for those who are going through treatment thinking no one can relate to their suffering and that the suffering will never end. You really will get well. It just takes time and perseverance. I may be in my 5th month of IV treatment with my current doctor, but I have struggled for several years with other doctors prior to this, thinking this is how it would always be.
Friday, April 4: I received my test dose of Tygacil last Tuesday and haven’t had any treatment since. So why do I still feel so awful from it? Woke up with such bad flu symptoms. Shivered all night long. No sleep. How is it I can be walking but really feel like I am dead? If I run the lactated ringers, which is supposed to be flushing out the dead toxins caused by the IV Tygacil, how can I still feel dead? If I get in the shower, it is good because it wakes me up but I still need to get back in bed, put on the heating blanket and lay there like a dead person. It all is confusing. Feel like the blood or fluid in my head is clogged and my brain is pounding, almost like something is squeezing it. Is this a headache? No, a headache doesn’t quite fit the feeling up there.
Saturday, April 5: I get woken up with a jolt with my heart racing and a nightmare night after night. I hate it but must tough it out. The itchiness drives me crazy. I’d like to scratch my skin off but I don’t. Feel so cold. Am under my down comforter but if I don’t turn the heating blanket on, I can’t warm up. My left eye lid is twitching constantly but Dr. Jemsek says it is only because the medicine is pulling bacteria out of the ocular nerve and it is being irritated. He says the nightmares and rapid heartbeat will go away as fewer bacteria are in there. He says it is coming from the bottom of the brain stem where the bacteria like to lie. It does not like to be stirred up. Ok. I will persevere. I have persevered for several years so what is a few more months?
Tuesday, April 8: Ran IV Tygacil last night. So nauseous. Dr. Jemsek says to take Zofran and two Marinol. Back of my head is spinning, spinning. What a freaky feeling. Medicine does not help. Still nauseous. Lay still in bed. So hard to try to lift my head up to take the oral medicines because the spinning intensifies. This Friday is the April Pennsylvania Lyme conference that I worked so hard at to make it possible for the attending nurses to get CEU credit. So disappointed I need to cancel and cannot give them their certificates. Hopefully I’ll be well enough to do it next year. Legs are aching, throbbing, and no appetite; need to force the food that Betsy gives to me. Ask her if I can have a smoothie instead. Maybe I will have more luck with that. Sheila brings me homemade soup. Tiny sips to keep myself hydrated.
Saturday, April 12: Made it through the week of Tygacil. Try to get out of bed but my knees are so wobbly and heavy. Get back in bed. Maybe it is too soon to get up. The nausea overwhelms me.
Sunday, April 13: First day for my next set of IV antibiotics, Cipro and Merrem. So so queasy. Mom has tickets to the Phillies game. Try to tell her I’m afraid to go in case I throw up right there. She’s disappointed. Leif picks me up, holds my arms because I am so weak to walk. We bring a trash bag in case. I look straight out and don’t turn my head as we drive. We put my seat down so I can rest. Leif carries my shoulders. I look straight ahead, sit in my seat and don’t move. Can’t wait till it’s over. Oh how awful to have such good seats and want it to be over. Make it home without incident. Thank you, Jesus. Time to run evening dose. Fall asleep, wake up to my IV finished. Thank God I woke up.
Monday, April 14: Wake up again in the middle of the night with a jolt and heart palpitations. Wake up to the song, “Oh the Wonderful Cross.” “Love so amazing, so divine, demands my life, my soul, my all.” Very good reminder that no matter how bad this feels, God is on the throne, and He is good.
Thursday, April 17: Holy Thursday. Read Luke 21-22. I wonder what Jesus was thinking when he sat on that hill at night after he taught all day in the temple knowing that was the spot that Isaac was sacrificed and where he would be sacrificed the next day? Last day of treatment. Thank you, Jesus. Maybe the symptoms will subside. Gillian brings over potato soup for me to freeze. I now have homemade soup from Sheila, Anne Bradley and Gillian. Now I can take small sips of them. So grateful to have them. Still so nauseous so can only tolerate tiny amounts. Weak, body is so weak. Shower is a huge accomplishment. Back in bed to rest. Hard to breath. What is that about?
Friday, April 18: Last dose of Cipro and Merrem last night. Difficulty with sleep. The racing heart and nightmares go out of control. Chills, Cold sweats throughout the night. Didn’t realize my heating blanket was not on. That was why I was so cold. Feeling of the flu upon awakening. Run the lactated ringers to see if it helps. No relief. Keep my heating blanket on all day. This is the day the Lord suffers. How did he manage it? Was the fact that He knew the future any comfort for Him? The fact that He was humiliated, rejected, beaten is beyond understanding. It is beyond understanding that it was God Himself who took this on. Not a robber or a thief but rather God Himself. The perfect Lamb walked on this dirty cruddy earth and subjected Himself to the basest of deaths. Ok, I can get through this day if He could get through the Cross.
Easter Sunday, April 20: unbearable headache the last two days. God help me to enjoy Easter, the day you made our faith truth. God gives me some relief and I enjoy my time with my family. One of the greatest Easters. It’s so exciting to see the kids getting older, each with unique personalities. We celebrate Jack’s 7th birthday.
Monday, April 21: No IVs this week but must take the antimalarial Coartem the next three days. Excruciating headache is back. Lie still all day. Ok, didn’t know it was possible to have a headache this bad.
Tuesday, April 22: Headache is still there in the morning. Drink several bottles of the flavored water that Leif drops off. It leaves . With the exception of the wobbly knees, I’m feeling pretty good. Run two bags of lactated ringers to keep getting those dead toxins out. It works. Get to see Christopher and Colin. So proud as if they are my own. Can they be anymore perfect in my eyes? No, it is not possible for any of my nieces and nephews to be anymore perfect in my eyes. Nurse comes to see dad. Although he is failing, he is still holding on.
Wednesday, April 23: Last day of Coartem and last day of treatment until I go back to the doctor’s on May 1. Feeling pretty good. Feel happy, no nausea. No headache. Life is good. God is good. I made it through and I feel good! Allister Begg’s devotional today says: “Jesus wears the appearance of a slain Lamb as His royal dress in which He wooed our souls and redeemed them by His complete atonement. And these are not only the ornaments of Christ: they are the trophies of His love and of His victory for us. He has redeemed for Himself a great multitude that no one can count, and these scars are the memorials of that fight.” Thank you Jesus for fighting for me on that Cross and thank you for helping me to fight through these treatments. How would I survive in those dark moments without knowing this, without knowing the hope that you give?
On to month 6 soon. Seems impossible but it is true. Dr. Jemsek says month 6 will be harder but I will do it. I will because my God will fight the fight for me!
“The LORD your God will fight for you; you need only to be still.” Exodus 14:14