This morning I woke up and couldn't help but start crying. I wasn't sure what I was feeling, but I knew it wasn't good. I wasn't in much physical pain, as I was just feeling the usual effects of my medication. I realized my tears were more deep than that. I wasn't feeling right emotionally. My mind wasn't in the right place. I didn't want to shower, I didn't want to face the day, and I didn't want to see my home nurse in less than an hour. But, I knew I had to put on a brave face so my mom wouldn't think anything was wrong. I wiped my tears, walked over to my mom's room so she could cover up my PICC line, then hopped in the shower.
The shower is one of the best times to reassess. I asked myself "Tara, how are you REALLY feeling?" 1 minute into the shower and I broke down. I couldn't stop sobbing. I stepped out and called my mom into the bathroom. I told her I wasn't happy. And I told her I didn't know why. My body is responding well to the medication, the cancer is continuously shrinking, and I am doing so well that my doctors want me to complete my next set of scans in 6 weeks. But after we had a serious talk, I realized that even though things were going well, the pain that I am feeling is getting to my head. I'm not as active as I'd like to be and I'm not seeing my friends as much as I'd like to because the pain I'm feeling is stopping me from doing the things that bring me happiness. I cried and cried. I asked "Why me?" I asked when this would all be over. When can I be done with the pain and have a normal life again?
My mom came to the rescue, as she always does. She told me she knew something was off the past couple of days. I was a little flushed and I wasn't my normal giggly self. I barely wanted to leave the house. My mom has been through some of the toughest times in her life and she's always come out on top. It wasn't easy, of course, but she has grown so much because of them. She told me to trust in God. To pray and ask for help. She told me to clear my heart and fill it with love, so that there is no room for negativity. She told me to ask how I can heal, how I can recover, and to give me the resources so that this can finally move on. How can I worship Him? How can I become closer to him?
My mom brought me so much peace, hope, and love. It is extremely difficult to make sense of your mental health when you believe everything is going "according to plan." As I said earlier, I know my medication is working well with my body and my blood levels are looking better every single week, but my mind was telling me that there is still something missing. My mom's reassurance that God is always there made me want to pray and pray until I couldn't find the words to pray anymore.
I'm so thankful for my mom. Her strength and determination to face all of her fears and become even stronger because of them makes me want to be exactly like her when I am older. I'm so lucky that I have her to guide me every day, to care for me and to keep me motivated while facing my biggest fear. So thank you, Mom. I love you so much.
Cancer is tricky, and it's extremely smart, so when it realizes that the medicine you're taking is trying to kill it off, it finds a way to live.
Unfortunately, that's what happened to my cancer once again since my last update in February. About 2 months ago, I had a PET scan done to see how treatment was working. It turns out that the activity in the tumor started increasing, and the intensity doubled since my scans a few months before that. Surgery was essentially out of the question, because the risk of cutting into an active tumor would only complicate my recovery. I was absolutely bummed out. Surgery has been my goal since day one and I thought i was ready. But, my doctors asked what I wanted to do (more chemotherapy, more radiation, just radiation, etc) so I decided to continue on with any treatment that they thought was best for me, even if that included more chemotherapy and radiation.
During the time that my oncologists were researching another drug to use and another more localized radiation treatment, the tumor grew and grew. My cancer is extremely
aggressive and once you give it an inch, it will go a mile. I could tell the cancer started to take things from me again: my energy, my appetite, my muscle mass, and my overall health. Within one month, I was taking pain medication every night just to be able
to sleep. I could not do my usual workout routine everyday, my daily walks were out of the question, and I was losing 2-3 pounds a week just from loss of appetite alone. Because I was in so much pain and to also get more specific information on what was going
on with the tumor, one of my surgeons, Dr. Lubawski, removed a part of the tumor that was growing on my ribs in order to complete a biopsy that will help us find a more targeted medicine for the tumor. This alone took away so much of my pain, I was so grateful.
The day after that surgery, my oncologist called and had me immediately start on a new medicine called Pazopanib. It is a new drug they are using in a clinical trial at Northwestern University, and is used on many patients with sarcomas. This medicine is not
necessarily a chemotherapy drug. It is actually a medication that completely halts the blood supply of the tumor and essentially starves the cancer. This makes the tumor shrink, and boy, did it shrink.
THIS IS WHY YOU NEVER GIVE UP. 1 week later (that's right, 1 week after starting this new medication), the tumor shrunk more than half of the size it was when I had the biopsy! All of the pain I was experiencing, the loss of energy, it all started to reside. I couldn't believe it. When the cancer grows, it eats first, meaning it takes all of your nutrients that you would be getting from the food you eat and keeps it for itself. But as it kept shrinking, I started to feel my body get stronger and really get back the energy I was originally supposed to be getting from the food I ate. I take this medication every night, and so far, I have not had any severe side effects. The first couple days I was a bit nauseous and had a pretty big loss of appetite, but 2 weeks later, I am pretty much back to normal. I still cannot believe it. NEVER. GIVE. UP. Just because you believe things are really bad at one point, doesn't mean they have to stay that way.
Just 3 weeks ago I was in so much pain that I could barely get through the day. I felt helpless, like my body was giving up. I hardly talked to my friends, my family could barely get me to stop crying, I didn't understand why things were taking such a bad turn. But, I prayed. And prayed. And prayed. I didn't give up. I knew things weren't going to end like this. They couldn't. God answers my prayers, He always does. So when I started that medicine and finally started feeling like myself again, I knew it was because of Him.
So, 3 weeks ago I was in probably one of the worst states of mind that I had been in in a while. But fast forward to today, and things are turning around. My oncologists are so amazed at how fast the medication is working, and they are excited for me to see Dr. Lubawski once again, so we can have his opinion on what he believes we should do next. Maybe surgery for sure this time. Who knows! This journey is a constant roller coaster, but it wouldn't be fun without a few twists and turns now would it?
I've uploaded 2 videos in the past couple of weeks, updating you all on my progess and also some of my discoveries I've made along the way. I find that the videos are much easier to do because I really like speaking in front of the camera, so why not try it? For some reason, I can't upload them onto this site (I think they may be too long) so I have them uploaded to my Facebook page. If you'd like to check them out, feel free to search for me on Facebook! If not, here are the links to them as well :) Enjoy!
First video uploaded on January 28th: https://www.facebook.com/tara.hill.77/videos/10209784111293024/?l=2514180470084051453
Second video uploaded on February 21st: https://www.facebook.com/tara.hill.77/videos/10209987534658481/?l=7341796891796851089
Yep. Unfortunately, there's a new nodule on the left side of my chest, right next to my sternum, that showed up on the PET scan. I can feel it myself; it's about the size of a golfball. I spent the last week and a half crying, screaming, staying up till 6am in pain, praying to God and asking why the heck he's doing this to me. Honestly, I was so angry for a couple days I could barely crack a smile.
But, I've been doing chemotherapy all week, and my doctors and nurses have been nothing but the best to me. As so many of you know, it's difficult to have a setback when you believe you're doing so well. For me, one bad thing can ruin a million good things. This new lump crushed me. It took a while, but after seeing my radiologist yesterday, my mood has finally turned around. He told me that we'll be starting radiation again on the left side, as well as an advanced form of radiation called brachytherapy to kill the remaining active parts of the main tumor. THIS IS GOOD. He knows it is, and now I know it too. We're making progress. Although it's scary, this is just the next step. Here are some really great things that have come out of the past couple weeks:
- The whole tumor is less than 15% active.
- The intensity of the main tumor decreased from 10.1 to 4.2.
- The intensity of the nodule under my armpit decreased from 11.3 to 2.7.
- THE CANCER IS STILL DYINGGGGGGGGGG
That being said, I've done my crying. I've done my screaming. Before worrying about the new lump, I was feeling so good that I was working out for about an hour a day. In fact, I'm actually starting to see the muscle tone come back in my legs. Once this week of chemo is over, I'm just going to get right back into that and live as if I never even had that new lump. Cause what else can you do? Sit? Cry? Whine?
Next week, it'll be an off week for chemo, and I'll be starting radiation as well as the brachytherapy. Hopefully this is the last big thing to do before major surgery!