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  • Writer's pictureStephanie

Kissing the Sun (and my RBCs) Goodbye

I officially have one week of Xeloda under my belt. I found out I was supposed to be taking 1,000 mg 2x a day and instead I only took 1,000 mg a day, total. Whoops.

So how was it? Tougher than I expected. And that was only 1/3 of the dose they want me on. Here are some of the side effects I experienced:

  • Nausea

  • Fatigue- I cannot stress this enough - cancer fatigue and normal fatigue ARE NOT THE SAME. I know I linked this article before, but I think it is worth another share: What is Cancer-related Fatigue?

  • Insomnia

  • Restless Leg Syndrome

  • Neuropathy

  • Pain

And my off week hasn't proven to be much better, which is discouraging.

I met with my oncologist's NP and had my blood work done on Tuesday. Here are the important takeaways from that appointment:

  • My red blood cell count is low. I actually went back and wrote down all of my RBC counts since my first appointment in September and this is the lowest they have ever been. Currently I am at an 8.8 (normal range is 12-16). If I reach a 7, I will need to have a blood transfusion.

  • As you might expect due to my low RBC, I have moderate anemia. I have been anemic throughout my treatment but it has definitely gotten worse. My arms and legs feel like they each weigh 50 lbs and every little thing takes an exhaustive amount of effort.

  • The chemo that was being considered that would target the androgen receptor in TNBC patients who were AR+ has been FDA approved. However, right now my oncologist feels the Xeloda is enough for me. After I finish this six months, we will revisit whether or not to add on this additional oral chemo.

  • My oncologist's goal is still to get me up to 1,500 mg of Xeloda 2x a day but we will have to see how my body tolerates this next round (boosted up to 1,000 mg 2x a day).

I am trying extremely hard not to sound needy, but throughout this journey I have been transparent and I need to continue to be honest.

I am in active treatment for the next six months. When my original plan of treatment was laid out, radiation was to be the final step and I would have the summer to recover. Then, to help transition back into work I was going to start subbing in the fall. This is what Ricky planned for when budgeting our finances and I believe it is what we both "budgeted" for our mental health. We had an end date and we thought we could push, push, push until that day, because there was an END in sight. But now, that end has evaporated and left us with another six months of me feeling crappy and there is still a looming question mark as to when treatment will definitely be over.

What does all this mean for us? Well, as I mentioned previously, I will need to avoid crowds. I cannot be in the sun (which is heartbreaking for me; I love being outside). I cannot work outside of the house. Ricky is burning the candle at both ends -- he works 8-10 hour days and then comes home to take care of our yard, our house, the cooking, the cleaning ... When I am having a good stretch of energy or not feeling completely nauseous, I do what I can to help but it is frustrating that I can't do more.

This is cancer. This is the stress we have been living under for the past 11 months. We are emotionally and physically exhausted. We know we are still at war and we will not stop fighting, but we could use reinforcements.

Updates & Prayer Requests:

  • The plan is to start my second cycle of Xeloda this Sunday, July 21st. Ricky's 30th birthday is the next day and the one thing he wants is to go out to dinner at the restaurant we go to every year to celebrate. PLEASE pray I feel well and we are able to celebrate Ricky!

  • Due to my already low RBC count, my oncologist is having me come in again on Friday, July 26th for blood work, to see how I am handling the increased dosage of Xeloda.

  • My Sittou passed away on July 8th. Please continue to keep my family in your prayers.

Didn't she look like a movie star?

  • In January my family planned a summer vacation to Rhode Island (my parents, sisters and their families). We believed I would be done with treatment by now and we looked forward to this getaway. We are hoping to still be able to go, with some major modifications for me and Ricky (no beach?). Please pray this is a time of joy and relaxation. My family has been through the wringer and we are all in need of a refresh.

  • My next appointment with Dr. T is Tuesday, August 6th.

Thanks for sticking with me.

All my love,


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