What is Next for my Live Life Detour?

Ready to live life again...

Checking in after Round 6! Yes, my last round of chemotherapy. Even writing those words still seems so surreal. Did the last 5 months really happen? Did I really go through that? Some days, I feel like I tucked my head in, closed my eyes and hoped tomorrow would come. Tomorrow did come, and I made it through this part of my #livelifedetour. As you know, the last couple of months were not easy, the side effects were many and like a moving target through my body. I struggled with my blood counts and the bone pain that came with the growth hormone shots to increase those counts. I also hate prednisone. I hate how it made me feel, how it changed my body (I call it the prednisone plump), and how it robbed me of sleep and peace. The good news is that I am done with the poison and the prednisone. So what next? While this is definitely a milestone worthy of celebrating, I am not quite done with this fight. Looking Ahead.

Causes for Celebration:

1. Chemotherapy is over! 
2. My Birthday is in 9 days! - June 5th in case you are wondering!
3. June 6th the port-a-catheter is being removed from my chest - Happy Birthday to me!
4. Every day, I will feel a little better
5. My hair is slowly growing back - and I might just make it platinum blonde - #whynot 
6. Only 2 more Mondays of giving blood every week
7. As soon as my immune system is stronger, I can get back to the gym 
8. The sun is shining! 

Bumps Ahead in the Road:

1. Every 8 weeks, I have to get a 4-hour maintenance infusion for 2 years - the Rituxan (yes that antibody with the part human/part mouse combo 😠) 
2. I have to wait until the end of July for my PETscan. This will show that I am in 100% remission, which is the only option I am allowing! 
3. The fatigue that I fight daily will not just go away.

I have to again thank everyone out there! On my last day of chemotherapy, I posted on social media and the outpouring of love and support was - well it was - WOW! Amazing, overwhelming, and uplifting.  It is crazy how that works. Just a few words here and there - and you can feel the love. It really helps me get through the rough patches. So thank you. Thank you for taking the time out of your busy day to just say something. Love you all! 💚💚💚

I also have to thank those of you that continue to show up or send cards, flowers, candles, angels, steaks (yes to help with my blood counts -iron), and trees (a money tree for good fortune). Human kindness is alive and I am so fortunate to have so many people out there that care about me.

Checking In after Round 5

I realize I have been really quiet here. It has been a rough few weeks between round 4 and round 5. But I still see the light at the end of the tunnel. I cannot believe I have one more round of chemotherapy to go. Then we wait 2 months (the waiting alone may kill me) and repeat the PETscan for the only option I am accepting which is 100% REMISSION. 
I know I have a long road to recovery ahead and that after May 21, 2019 - last day of chemo - I will not just bounce back - but I will start living my life again and each day I will get stronger.


Round 4 of chemo was a bitch. I developed Peripheral Neuropathy. which basically made every nerve in my body extremely painful. It hurt to even lay down, add bone pain to that, and I was pretty much a hot mess! That lasted right through my third week - which was supposed to be my good week - so I felt ripped off and not ready for Round 5. But I pushed through - because as you know by now, the only way outta here is through. We made it through round 5 with minimal side effects, some loopiness, and laughs. During the infusion, my port stung a bit, but Remy checked it and it was fine. As you know that Purple Power Port is in my chest and the catheter runs from the port to the superior vena cava, just upstream of the right atrium. Later that night, I felt the part of the catheter popping up under my skin and it hurt. I am now waiting to have a "port study" done to make sure it is ok (and not the good kind of port wine - haha).  All part of my #livelifedetour. Will keep you posted on that.

As for Round 5, so far, it is the typical exhaustion, headaches, nausea, metallic tastes and lack of appetite - all side effects I can handle. Counting the days to Round 6 and being done! 18 to be exact. Moving on from this detour!

To help reduce the chances of more Peripheral Neuropathy, we are switching back to Zarxio and off the Neulasta - the Neulasta worked great! My white blood cell counts were off the charts high! But the other side effects were also off the charts in a negative way. The main difference between the two is how long they last in your system. Neulesta lasts for 14 days and requires me to be on prednisone for longer than with Zarxio (as it helps with the pain). Zarxio only lasts 24 hours and requires multiple injections and does not work as well - but honestly, I would rather be housebound from people and germs and wear a mask when I am out than have the pain. Especially since I am so near the end. So shot number two is today.

That is all I have for you today. Just wanted to check in. I am forever grateful to all of you that continue to follow along with me either here or on social media and send your love and support. I know I have said it before, but I so appreciate all of you and it really helps give me the strength to keep fighting. Love you all!!! 💚💚💚

Oh, one last thing. I could not have survived the last few months without snap chat - those filters have made me laugh, cry, and see myself in all different ways. Thanks to my sister and team for snapping every day - what a silly and fun way to communicate. Here are some pics from this past month.