I was so happy that I was feeling well physically, even after going off of the Doxy. I was also able to practically forget about the huge decision I must make in the coming weeks about what to do with my health...up until 5am the morning we left to come home. I woke up in a panic. I think knowing that I was returning to the real world and will have to face this burden again, put my mind in a tailspin. I was so certain that I wanted to be aggressive with this m. abssessus infection last week. Today, I just don't know??? I'm so confused. It may just be the fear setting in...
Just prior to going away on vacation I had another long conversation with Dr. Dazzle. I learned that I need to avoid enclosed showers and hot tubs. I likely got the m. abssessus from breathing in steam from hot water. Dr. Dazzle wanted to warn me about these things to avoid, so that if we treat I do not immediately reinfect myself. I thought I had gotten this from my past surgery, but Dr. Dazzle said that I would have had to get it from the tube that they used to intubate me. If that were the case, they probably would have had an outbreak of mycobacterium in the hospital at that time. It's more reasonable to think that I got this infection from water. I did still go in the hot tub on vacation... Hey, I'm already infected. I may as well enjoy one last dip!
I learned that the 3 antibiotics I will be taking if we treat are Clarithromycin, Amikacin and Cefoxitin. They are IV and I will need them for 3 - 12 months...possibly longer. I can't remember which drug, but one of them is extremely toxic. The possible side effects include hearing loss, kidney failure and neutropenia (low white blood count = weak immune system). I've talked to several people who have had these side effects. They can be brutal. Also, since I'm allergic to Penicillin, I will have to be desensitized to the Clarithromycin. I will be inpatient and they will administer very small doses initially, until they can give me the full dose without side effects. These are the potential risks of taking the aggressive approach. Maybe I will experience none of them...maybe?
My other option is to do nothing. To wait it out. To wait until I have more symptoms. To wait until we see lesions.
This reminds me of the story of Damocles Sword. The term means "an ever-present threat; an impending disaster". Damocles was a poor man in ancient Greece who was jealous of the ruler Dionysius, tyrant of Syracuse, for his wealth. The praise annoyed the king, so he decided to teach him a lesson. He held a party in honor of Damocles. To prove a point, Dionysius hung a sword by a single horse-hair over Damocles' head. Damocles was no longer jealous, as he realized that even those who appear to enjoy great fortune face fears and worries." This is how I have always felt about my CF. I have always been fearful of the sword dropping. I know it will, it's just a question of when. I think this is how I will feel every day if I choose to hold off on treatment for now. Then, what happens if it is beyond the point of being able to be treated effectively when it does progress? Oh boy, I have so, so many questions for Dr. Dazzle.
I feel like I'm teetering between two extremes. This is one of the toughest decisions I have ever had to make. What's weighing heaviest on my shoulders is thoughts about how my family will be taken care of if I'm out of commission for such a long time. I have complete faith in the fact that my husband and family will keep things afloat, but I'm the mommy. I'm supposed to take care of everything.
What if I choose the wrong path? I had a 12 hour conversation with God on the ride home from vacation. I asked...no begged for a sign. I really wish someone else could make this choice for me. I wish someone would tell me what to do.
I turned 35 yesterday. I spent the day with my family and the evening with my dear friend, Elizabeth. It was a fabulous day! Elizabeth was my shoulder to cry on during my last round of IV's. The advice she gave me last night was that I need to make this decision with my heart, instead of my head. My head is just overflowing with too many "what-ifs". I just wish I knew what my heart was trying to tell me. Can anyone hear what my heart is trying to say? I am hoping beyond hope that I have more clarity after my appointment next Friday.
3 comments:
Oh goodness girl, you sure do have a lot weighing on you! I haven't been able to go a single day since I got off my last 9 weeks of IVs this summer the whole what if the infection is not healed...until I can see another CT scan of my lungs and know that it is truly gone, I'm going to live with the paranoia of it still there and coming back harder.
No one can truly tell you what to do, as you are the only one that truly knows how you feel, but if it were me in your position, although it would be extremely difficult to be on IVs for 3-12 months, it would be worse to go each day without doing something to heal up what is ailing you and could get worse if nothing is done.
God Bless you and know that He is with you and will give you the strength to make this difficult decision.
Whatever you decide will work out. We do the best we can every single day. That's all anyone can ask of us.
Thinking of you and wishing you the very best on your 35th birthday. You are a gift to everyone who knows you.
Peaceful Things.
We should talk. I'll call you soon.
Colleen
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