It's been a while since I've written. I often write a post in my mind when I can't sleep at night, but the words never actually make it on a page. These last few months have been an adventure to say the least. I've deleted my Facebook around 6 times. When you go in to delete it, facebook has this tricky thing that says you have 30 days from when you click delete until your account is actually gone. So, I'll click delete and inevitably a few weeks later I'll go log in. Not that I look, but it's more for the chance to later. Then (usually within a day or two) I go back in and delete one more time continuing the cycle. The reason I deleted in the first place was because seeing everyone living their lives, moving on, having great things happen was making me depressed. I felt like I was all alone over here just bumbling through. I figured the best way to stop that was to cut off the contact with the social media site. I have found that I miss the group for people with cystic fibrosis. I never talked to anyone, but it was interesting to see what others were going through and I used the search function within the group to look up all sorts of questions about sinus surgery, different bacterias, and other CF related things.
After my last post, I lasted another 2 weeks on those drugs. At my doctors appointment September 9th, I told my care team I was taking a break from meds. All ivs were to be done until the beginning of 2019. I felt that if I continued with the drugs my body was going to give out. I didn't have any more fight left in me, and I was utterly exhausted body, mind, and soul. They didn't agree but they could understand where I was coming from. When the pharmacy tech came in and my doctor announced I was taking a break he responded with, "I can see why she would want that. She is worse off now than when we started this 18 months ago." As I walked out of clinic with the plan that I would see them all in November to see how my health was doing, a few members of my care team gave me a side hug and whispered, "I would do the exact same thing." That night I got home, flushed my port, put in extra strength heparin, and pulled out the needle. It was a glorious feeling. I didn't have my leash, I could shower at the drop of a hat instead of needing 15 minutes to prep my port, and I didn't have a backpack in bed at night.
The next 3 weeks were the best weeks I have had in a long time. I was happy. I felt light. We went on walks, outings, adventures, hikes, and I could eat again. It was a side of me that some people had never seen before. All they knew was the Taylor that had been bogged down by ivs, exhaustion, nausea, and a fanny pack. It was like I had awaken out of a fog that I had been stuck in for 18 months.
On October 4th I started having shoulder pain. Really intense shoulder pain. I had an idea of what it was, but in no way was I going to voice it and take the chance of jinxing things. It finally got to the point that I could barely move my arms. I text my doctor (that's how cool I am, I have my docs personal cell number) and told him what was happening. He was just boarding a flight home from Amsterdam and the main thing he could write back was go to the ER. I notified the team. It's either your gallbladder or you have a collapsed lung. I sighed as I read his response because this is news no one wants to hear. Miraculously my brother-in-law who is a doctor just happened to be driving home from work and was 5 minutes from our house when I called him. He immediately came over and did an exam to see if I really need to go to the ER. He listened to my lungs and said if my team would ok it, he would recommend an order for a chest x-ray and avoid an ER visit that would be filled with potentially dangerous germs. They agreed and we ran to Park City to get the x-ray done. They called later that day and told me I had a large spot of infection in my lungs and plans were made to see my doctor the following Monday. They asked that TJ come to the appointment and I knew things weren't going to go in my favor. At the appointment they all walked in looking at me like I was a ghost. The social worker was crying and my doctor explained that going off treatment hadn't been the best idea. If I continued to be off of ivs, I wasn't going to live much longer.
Believe it or not, I started laughing. I was somewhat in shock and just couldn't believe the reality of it all. They explained that with the bacteria I have, there is only a 25% chance of clearing it, and that's usually for people to respond to treatment right away. (I realized my odds of clearing it was next to none since I hadn't responded to treatment at all.)
We made plans for me be to be admitted to the hospital for 2 weeks to restart treatment and get back on all my ivs. The part that broke my heart the most was being away from Chloe. I hadn't been away from her for more than 6 hours since the day she was born. My mom came up to help TJ with taking care of her. They came to the hospital a few times, but Chloe would get bored after 20 minutes and it was a lot to ask of TJ and my mom. After a week we did pft's (pulmonary function tests) to see where my lungs were. I scored a 99%. The highest I had ever done. So I was released after only 7 days. It was truly a miracle. Walking in to my home after being away for so long was a breath of fresh air. Chloe clung to me and held my face between her two little hands looking into my eyes and saying "Momma, oh momma. . . momma" and giving me lots of hugs. The nights after my return took their toll with Chloe waking up multiple times to make sure I hadn't left and would be up for hours to make sure I was there. My new fanny pack is about 4x the size of the old one and quite a bit heavier too. New medications can cause cancer and color blindness so we keep a close eyes on my blood counts and vision.
Things had hit a routine again, including the exhaustion, but at least I know it well. Last week I started having crazy back pain. I've never really had back pain before and was very confused about what was going on. We went last Saturday to urgent care where they found another spot of infection. We aren't going to add any more drugs simply because my system can't handle it. We'll wait and see, and pray it doesn't get worse. We kept our plans of having a family party for Chloe's 2nd birthday since I could either be in pain alone, or be in pain and let Chloe have some joy. It was a wonderful party with family and friends and so much love for my little girl.
21 months of treatment. Chloe opens my syringes, helps flush my port, celebrates when I get blood back ( which means my port is clear), and pushes the buttons on my CADD pump. She listens to my lungs with her real stethoscope and "helps" me with my breathing treatments.
Now for the scariest part. The past 3 months I have gotten a negative on the test for the bacteria. I need 12 to stop treatment. I am scared to hope things might be looking up. I am terrified to let myself become excited about being done. The last time I was in this situation, we had 7 negatives and then a year of positives. Hope can be a scary thing. I am taking it one day at a time and living the best I can. I slightly dread when I see I have a new test result and hold my breath until I see what test it is.
When thinking on it all, I came to the realization that this isn't a challenge to see if I can conquer the bacteria and be cured. It isn't a test to see if I can push my way through it. It is a test of character. To see who I will be in the face of struggle. To help me realize life is about a lot more than having a perfectly working body, but to work with the body you have. CF is an invisible illness. I can hide how I'm feeling quite well. I have been masking the pain for 26 years. Sometimes I let the mask fall because it can be exhausting to keep it up, but pretending things don't hurt is better then sinking into it all.
We are all champions of something. Conquerors of our own struggles and pursuits. We are all fighters against the invisible.
