Rushing towards the new normal.

November 24, 2019

Rushing towards the new normal.

I made it through infusion #5, which means I HAVE ONE CHEMO LEFT. Praise God. I am still dealing with the aftermath, so I'm not quite "through" it, but I'm functional and even put in a lot of work organizing my closet this morning (and definitely overdid it).

I caught myself thinking today that I wish I could just do the last chemo now and be over it. As horrible as I'm feeling, I would opt to continue feeling horrible just to say this stage is behind me.

A few things since last post. First, I had my follow up echocardiogram. One of the antibody drugs, Herceptin, has a potential heart-related side effect that lends to repeat echos every 3 months. Considering that I've had a new side effect of feeling my heart thumping out of my chest around a week past infusion, and a sad history of heart disease on one side of my family, I was fairly nervous going into it. The results came back that my "ejection fraction" - the percentage of blood that is pumped out with each contraction - was 50-55%. The report said this is the low end of normal, and that we should consider following with a more detailed test.

For comparison, my first echo showed an ejection fraction of 55-65%. As I sat on this info, waiting for my appointment with my oncologist, I wondered what this would mean. I need the Herceptin to shut down the HER2 protein and increase my chances of becoming and remaining cancer free. There are two antibody drugs, but (1) I was pulled off the other one (Perjeta) after cycle 2 due to side effects; and (2) Herceptin is the one I will be on every 3 weeks for a full year. Thankfully, my oncologist consulted with the radiologist and determined that my results are close enough to static that I do not need anything else besides routine repeat scan in 3 months.

My mom had the pleasure of attending chemo with me this round. She asked my oncologist whether my skipping the Perjeta would decrease my chances of full and long term recovery. My doctor said..."we don't know. But if she stayed on it, she would end up hospitalized, so we have to make adjustments along the way to make sure she gets through this okay. She did get a little benefit from it the first two rounds."

That was the most sobering response. I of course want to do everything possible to keep this horrible disease from returning. But I do need to actually make it through this, you know? As of this morning, I am down almost 20 pounds from my weight at diagnosis. Granted, the first 10 of that was baby weight that I had gotten comfortable hanging onto. But I'm not comfortable with this current weight, nor with the extreme weakness I feel. Nothing in my closet is presentable, other than the stuff I've purchased recently. I have no muscles. All of this would have been even worse if I had stayed on the Perjeta.

I have no idea what life will be like after chemo. I wish I did, particularly as I purchase clothes that fit me a little better. I know eventually that I will go back to my regular, daily activities. I will be back in the office daily, doing school drop offs and kids' gymnastics and other extracurriculars. I will plan vacations without wondering if surgery or Herceptin infusions or scars or my port will interfere.

But what I'm concerned with is that things will NOT be normal and I will be expected to act like they are. The lingering exhaustion of chemo will last well beyond my last treatment. I will still have likely multiple surgeries and infusions every 3 weeks. After that, I will still have annual appointments with my oncologist and (hopefully) scans to ensure I'm still cancer free. Aches and pains will strike me differently. I will be more cautious. I pray for grace from myself and others.

If you are the praying type, please pray (or send good thoughts) that my MRI on December 3rd reveals that the chemo has DESTROYED the cancer. Pray that my platelets pull off miracles and allow me to have my final infusion on December 11th (my oncologist has already level set that I will likely be delayed). Pray that I finally get to have appointments with my surgical oncologist and plastic surgeons, so I have a surgery plan and date soon. And pray that my side effects get more and more manageable with each passing day.