This past Friday I had chemo #10, which was another round of Taxol. Thursday I had done pre chemo blood work and my lovely friend Mariya had taken me to go get this done. I appreciate her so much. She has really been there for me through this journey not only as a friend but as a support. You don't meet too many people with a heart like hers anymore. I'll always be grateful for her. Later that afternoon, I met with Dr. R and I decided to wear my blue wig to my appointment. I was too shy to show off my bald head and I was feeling a bit bold so I went with the dramatic wig. I figure people would stare at me because of my bald head but now I was really going to give them something to stare at. I got a few shout outs at the hospital as I walked around and I honestly didn't care at the looks people gave me. For this appointment, I went in alone because there were some personal questions I wanted to ask Dr. R and I wanted to keep them between us, otherwise I would have let my sister join us. Overall, I'm doing well and was able to proceed with another round of Taxol if I wanted to. I said I would keep fighting so I was on board.
With my blue wig.
I haven't decided if Taxol is a worse recovery than my first regimen, ECX. The thing about Taxol is that it seems fine and dandy the first two days then all of a sudden the side effects creep up and I'm feeling like death. My body starts to swell up and feel stiff, and I feel like I'm on my death bed. With ECX, I hated the daily nausea and vomiting that would make me cry because I felt so weak. I never knew when it was coming on and it was so unpredictable, I hated it. On Friday, I walked into the infusion center with my parents and Gail was my nurse. I really like her. She is so genuinely sweet and caring. She's also very experienced and is always giving me great advice. I tried to nap during my infusion as I had taken an Ativan earlier. Nurse Gail also changed the dressing to my midline. I felt bad for my parents who wanted to sit there with me the 3-4 hours so I had them go fetch me an iced coffee at the cafe to give them something to do. To the infusion, I wore a knit hat because I wanted to show the nurses my new hair do and I just wanted to sit there bald where it was completely normal.
Getting my Taxol like a champ.
My oldest brother arrived in town to visit for the weekend. Let me add that this is the brother who said he would shave his mustache off and he hasn't! So let's all pressure him to keep up his side of the bargain. Saturday I played it easy and just stayed in bed mostly. By Sunday, my appetite was doing well and I ate lots of tacos. I spent some time in the living room and I started to notice that my legs were becoming stiff. The side effects of Taxol were starting to hit me. Later that evening, I went to take a shower and as I undressed, I noticed a big rash on my right hip. My body was starting to swell up and I could totally see this in my abdomen. Later I found out that my rash is actually a fungal infection (not bacterial as we thought). I have a low immune system and fungus is everywhere so I was just lucky enough to get this. There is nothing I did to get it. To treat it I'm just taking an OTC ointment. When I got out of the shower, the full Taxol effect had set in and I was feeling horrible. I had a headache and horrible body ache. I tested my oxygen level with my oximeter and it was dipping to the high 80's. I asked my sister to hook me up to my oxygen and I felt a lot better with my breathing. I had comfort knowing that nurse Paula would come see me in the morning. At this point, all I wanted was just to sleep my recovery away.
Oxygen with the lil lady.
Nurse Paula called me in the morning and she told me she would be by around 11am. I couldn't wait to see her. I knew that by her tapping my lung, it would also provide me with greater breathing relief. I was still on oxygen when she got there. My oxygen level was bouncing all over the place in the 80's so it was best just to stay on it. Paula was able to get another liter out of me (as was my nurse on Saturday who came to visit). I must say, it does concern me that my health is declining now that we are able to get a liter of fluid out of my pleural cavity 3x a week. Before, we were doing it once every 6 weeks. It doesn't take an oncologist to figure out what this means for my prognosis. I'll let you put it together. Because my body was retaining fluid, I started taking Lasix to help rid my body of it. I had about 10 lbs of fluid that I needed to get rid of, just based on my average body weight. I hated feeling like mush and having to get up every 10 minutes to go to the bathroom. Part of me writing this blog is to remind myself of tips to get me through Taxol recovery. I would have to tell myself to stock up on the water intake after infusion. Also start Lasix sooner. The Taxol is what was causing my shortness of breath, so have the oxygen on standby. Take Ativan or Ambien where needed and just sleep it off. Taxol sucks and so not being awake to feel it is best.
Pleurx catheter just in case you wanted to see what it looks like.
So it's Tuesday evening and I made it through chemo #10. I've recovered a lot quicker than last time and it wasn't as bad. I still had that moment where I was shocked that I had to do this one more time before we do a PET scan. But I'm a warrior and I can do this. Hopefully the next two weeks will be uneventful and I feel good. I am planning my own Disneyland trip, a la Make A Wish style. I know I can hit up the Dream Foundation but it's such short notice that I've decided just to do it on my own and use some resources to make it happen. Later on I can ask Dream Foundation for a trip to Sea World in San Diego if my health allows it. I'm excited to plan it and nurse Paula has given me a lot of good advice. My dad flew back home tonight so I got to catch up on my tv shows on DVR. I was watching The X Factor and The Voice. I love singing. I hate that I get short of breath so I can't sing for very long. While watching these shows, I started to get sad. I started to think about American Idol in January. Would I be around for that? I thought about Usher and Shakira joining The Voice. Would I be around to see them as judges? There are a lot of things going on in life that I'm going to miss out on. That's why a lot of stuff doesn't faze me. I hate hearing about politics on Facebook. Whichever side you root for, there is bashing and it just drives me up the wall. It doesn't matter who is elected president. I will still have cancer and it will still be incurable. I will not live to see 2016, that's just the reality of it. At this point, I'm lucky if I get to see next summer. I know it's hard to hear these things but it's just my reality that I have to accept. I don't know how much time I have left. I don't know if the Taxol is working. Did I just lose my hair for nothing? If it's not working, what do I do next? Do I keep trying the next chemo until it works? How am I going to feel? What is my quality of life going to be like? Some days I wake up and I'm feeling good and I will have a good day. I have my moments where I get down and hate my life and cancer. I think and think and wonder if I can keep living my life like this, as a cancer patient. I've lost so many things to cancer. How do I rebuild my life if I recover from this? Most of my friends have abandoned me. Do I let them back in now that we don't have to deal with the big C? I really do applaud survivors. Cancer tears your life apart and it never leaves you. You'll always have to deal with scans and that question of it coming back. Sometimes I think that I have the easy road. I may not know my expiration date but at least I won't have to deal with the bullsh*t of life forever. At the end of the day, I believe that only God knows what plan he has for me and whatever he chooses I'm completely ok with because I fully trust him.
A girl I used to know...me.
And with this video, I leave you my farewell song.
Thank you for sharing your journey so openly.
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