Hi friends! It’s been a little while since my last update…..so I wanted to keep everyone in the loop on what’s new 🙂 I’ll use the same Q&A format for the health stuff…that seemed to work well last time. So, here are the most common questions I’ve been asked since my last blog post…..
Question: Are you still taking the chemo pill (Xeloda)?
Answer: No, I stopped taking the oral chemo pills after the first cycle. Around day 13 of the 21 day cycle (as I mentioned in the last blog post) I developed blisters on my hands and feet so I stopped taking the pills on day 13 of the cycle instead of on day 14 as originally planned.
Question: When will you start cycle 2 of the chemo pill?
Answer: Because I experienced “toxicity” on cycle 1 of the chemo pills, my doctors decided that I will start cycle 2 after radiation ends. Radiation ends on April 15, 2019- but we do not have an exact date yet that I will start cycle 2…..it just depends on how my body responds to radiation. I’ll likely need some time to heal after radiation before we start the chemo pills again (The original plan was only to have 1-2 cycles of the chemo pill before radiation- so this isn’t a huge deviation).
Question: How are your hands and feet?
Answer: Much better! My hands and feet started feeling almost back to normal after about 3 days of being off the Xeloda.
Question: Did the doctors decide to decrease your dose of Xeloda for the next cycle?
Answer: Yes, instead of taking 7 pills (3500mg) per day, I’ll be taking 6 pills (3000mg) per day. I’m praying I will be able to tolerate the decreased dose and it will be a little easier than cycle 1.
Question: Did you have any other side effects from the Xeloda besides the blisters?
Answer: Unfortunately, yes. I try not to complain (because I KNOW how lucky I am and how things could always be so much worse), but I also don’t think it’s helpful to sugar coat the situation either. So, here’s what I experienced: On days 2-10 of cycle one, I had (a.) nausea every morning and (b.) mild-moderate nausea during the day/evening. It wasn’t pleasant, but it wasn’t so awful that I couldn’t function or work (thankfully). Towards the end of the cycle, the nausea was pretty bad in the mornings when I was up early getting ready for work. It felt kind of like getting ready for an early flight after a fun out of town wedding where you had several cocktails. Not unbearable, but certainly not ideal.
From what I remember, by around day 11-15 of the cycle the nausea changed from moderate to SEVERE. I’d compare the nausea here to a 6am flight the morning after a girl’s trip to Vegas (a’hem- Elizabeth Wilson’s 30th Birthday is the example I have in mind at the moment) 😉 Ah, memories! Anyway……for about 6-8 days AFTER I stopped taking the medication, I had horrible abdominal cramps (among other things) as well. So that was a good time! I honestly thought I might have had a stomach bug I felt so horrible. After about 3 days of being in bed, we made an appointment with the doctor (and I called mom to come in town- sometimes you just need your mom). The doctor said most likely the stomach cramps/abdominal pain were from the Xeloda, not a stomach bug- but there WAS a bug going around. “Abdominal Pain” is listed as one of the “common” side effects of the medication- so realistically- it was probably the Xeloda. Here’s the silver lining: (1) I wasn’t nauseated this weekend (2) I wasn’t nauseated this morning while I was getting ready for work….so I’m happy to report I’m feeling better stomach wise!
Question: How many radiation treatments have you had so far?
Answer: Today I had my 13th treatment, so I have 20 more radiation treatments left. By the end of this week I’ll be at the half way mark!
Question: Do you go to radiation every day?
Answer: I go Monday-Friday, so 5 days a week.
Question: When do you finish radiation? Will you get to ring a bell after the last treatment?
Answer: My last day of radiation is April 15th and yes! I’ll get to ring the bell after my 33rd (and last) radiation treatment! If anyone wants to come to my radiation “bell ringing” – PLEASE do! The more the merrier! I promise it will be much quicker than the chemo bell ringing 😉 Message me for details if you want to come! One thing I’m trying to embrace in this process is celebrating the small victories. Radiation bell ringing: a victory!
Question: Do you still do labs every few weeks like you did during chemo?
Answer: Yes. Actually, last week my labs indicated that I was neutropenic. Everyone remember that word from chemo? In case you’re just tuning in, “Neutropenia” is a condition associated with a low white blood cell count. Adults that have less than 1,500 neutrophils per microliter of blood are considered neutropenic. While all white blood cells help your body fight infections, neutrophils are important for fighting certain infections, especially those caused by bacteria. Neutropenia makes me more vulnerable to infections so I have to be really careful. Practically speaking, while I’m neutropenic the doctor’s don’t want me around sick people, sushi, or uncooked fruits/veggies. (Basically the same food rules you would follow if you were pregnant). The doctor said the neutropenia is likely due to the overlap between the chemo pills and radiation. It was just a lot on my body at once- but hey- we are being aggressive so I’m okay with that! I’m not sure how long the neutropenia will last, but since I’m not on the chemo pill right now until after radiation, I’m hoping my counts will be back up soon! 🙂
On a positive note, here are some things that made me smile over the last few days💜
1. Our very good friends Meg and Eric got engaged!! After going through what we have over the last 10 months…. it seems like I “feel” joy for others so much more now than I used to. Mark and I got engaged in late October of 2017. It was one of those beautiful fall-feeling October days…. and right after we left Oak Alley we met Meg and Eric at Bin 77 to celebrate. So, it seemed fitting that we keep that tradition alive when they got engaged. (Pic below).
It’s crazy to think about how much has happened since Mark and I got engaged. It has been a hard year- but I’m honestly grateful that my diagnosis forced me to re-examine my priorities. My faith (and wonderful support network of friends, family, co-workers, and BC sisters) has made this process so rewarding. I know I probably sound like a broken record- but that’s because it’s true. I’ve been able to meet and connect with so many wonderful people over the last 10 months that I probably would have not met otherwise.
Another highlight, I was able to workout Saturday and Sunday morning with NO nausea! Praise. The. Lord. (Pics below).
Katie (pic above) recently had (and recovered) from some scary heart surgery. She had a very rare condition where the surgeons had to remove some sort of tumor from her heart….but thankfully- she said she’s going to be okay! (Apologies for the over simplified version of the condition….my medical knowledge outside of TNBC is pretty much nonexistent). 😉
Another highlight: I recently started washing my hair again in the shower- and it feels GLORIOUS. I have not been able to wash my own hair since May of 2018. (See blog post about the cold caps for more info on that). I also (gently) used a blow dryer on my hair this weekend for the first time. It might sound silly……but try using a shower cap for 10 months in Louisiana and see how chipper you are! 😉 I took the video below after my very first hair wash….excuse the lack of makeup. I hesitated on including the videos for that reason…..but life isn’t always perfectly polished with a fresh face of makeup 😉
I’m lucky that my friend Shannon (below) volunteered to wash my hair for the last 9 months. She barely knew me when she volunteered and stepped up in a huge way. I’ll forever be grateful to her for that. (My sweet friend Leslie also washed my hair too….it takes a village people!)
The last question is for my Family/Friends: What else is new with you and Mark?
Answer: If you’re still reading by this point (bless you)…… I do have one more update! Mark and I are having a little “post wedding” party on April 27th! A friend graciously offered to host a party for us since we were only able to have 25 guests at our last minute “pop up” wedding in June. Here’s the deal on the party: I mailed half of the invitations about a week ago, and I sent out the other half this weekend (because somehow I miscalculated the number of stamps AND invitations we needed and had to order more of both). Yes, I could have just gone to the post office to get the stamps. However, if you know me….I’m way too “extra” for a regular flag stamp (not that there is anything wrong with a flag stamp). Anyway, if you haven’t received your invite yet and are wondering what is going on, one of several scenarios could apply: (1.) you could be in the stack of invites that I mailed out this weekend so it hasn’t arrived yet (2.) you are on the list but we ran out of invites -and we won’t be getting the extra invitations until this week so I haven’t mailed it yet, or (3.) I honestly may have forgotten to put your name on the list. I’m a perfectionist and CRINGE to even type #3…..but I’ve accepted that I can’t work full time, “do cancer”, be a perfectionist, AND keep my sanity. I sincerely apologize if I left anyone out, I promise it was not intentional. SO- if you’re reading this and thinking “hmmmm, I haven’t received my invite yet?” or “I’m free April 27th, I know these people….I would like to go to the party.” PLEASE do me a solid and text/e-mail/message me. Under normal circumstances I would go through the list about a dozen times…..but that isn’t realistic for me (or Mark) right now….case in point- it’s 7pm as I’m writing this blog. ****Also- if you have your invite in hand…..you’ll see that I failed to mention ONE minor detail…..the RSVP. (I’m really killing it, I know.) The host does need a head count for purposes of planning the food. So, if you have not already, please RSVP on our wedding website and let us know if you can (or can’t) make it to the party. (The wedding website is listed on the back of the invitation.) Mark and I are excited to see so many people we love on April 27th! LIFE is certainly worth celebrating💛
As always, thank you for the continued prayers, support, and love. I couldn’t do it without you guys.
⭐️Holly Hollis Stars⭐️