July 1, 2022

Hi, y’all, and Happy Friday before the long holiday weekend.   To my Canadian Peeps, Happy Canada Day to the rest of y’all – Happy Fourth of July weekend.  I am so behind in my blogging and I will apologize for that now.  It’s been quite the week for us in the Gialusis household.  

I got back from Florida last Thursday and it’s like we’ve been on rollerskates ever since.  So many stories to share.  Where do I begin???  

The first story that I will start with is the story about me losing my diamond tennis bracelet in Tampa Airport at a store where I tried on some Buccaneer shirts, which I did not realize I’d lost until 25 minutes before boarding my plane and miraculously an honest employee of the store turned it into the manager and I was able to get it back.  The story is much longer and much more detailed than this, obviously, but it restored my faith in humanity and the fact that there are still honest and ethical people in the world today.  What a refreshing thought.  So big KUDOS and thanks to the employee who turned my bracelet into the manager so I was able to get it back and STILL board my flight on time.  Miracles DO happen.  (PRAISES!)

I then had my Uncle Doug’s Celebration of Life ceremony last weekend which had been postponed for a year due to COVID challenges and the fact that my cousin Sabrina, who was diagnosed with breast cancer a year before I was, had some health challenges over the past year so the celebration had to be pushed out.  I will blog more about this in a follow-up blog as it deserves its own entry so watch for that.  The long story short of it is that last weekend was spent with family, family, and more family.  All of which was so good for the soul. 

Then we started the week with more family obligations, however, this time it was for Mano’s mother who fell and fractured her pelvic in two places and her femur in one.  For those who don’t know, Mano’s mother (we call her Yia Yia – which is Greek for Grandmother), lives with Mano’s sister Vickie.  Vickie has not had a vacation away from Yia Yia since her father died 26 years ago.  Vickie left on Sunday to go to Greece with a friend to visit family, a trip that had been pushed out for 2 years due to COVID.  Well as fate would have it a day after Vickie left, Yia Yia fell and ended up in the hospital until yesterday.  Mano was by her side the whole week.   We are so thankful that she’s home and seems to be doing okay, but we are more thankful that Vickie is enjoying her MUCH NEEDED vacation in Greece and letting us deal with everything here.  

Mano and I had to juggle schedules on Monday, since he was then needed at the hospital with Yia Yia and I had an appointment with my oncologist, Dr. Beth, leaving us no choice but to move Christian’s appointment to get his one remaining wisdom tooth out from Monday to Tuesday.  Like I said – rollerskates this week!

Anyhoo, an update on me.  I met with Dr. Beth on Monday and we discussed how my radiation went, and how I was feeling, looked at my bloodwork which was excellent, and discussed starting the Xeloda.  We agreed that I would not start the oral chemo until my DPD Enzyme test was back and pending that all of that /was good.  I would begin the oral chemo on Tuesday, 7/05.   The regime for Xeloda is to take X number of pills in the morning and then X number of pills in the evening for 14 days, then you take 7 days off and then start again.  The 15 days on and 7 days off is considered a cycle.  The initial goal was to be able to complete 8-cycles, which is 24 weeks.  There is a multitude of different ways you can begin taking this medicine, some doctors start high (4 tabs in the morning and then 4 tabs in the evening), and other doctors start lower (3 tabs AM and then 3 tabs PM).  The goal is to see where your ‘sweet spot’ ends up being without too many side effects.  I had conversations with my oncologist at MD Anderson (Dr. Chavez) and her thoughts were that I would “most likely” make it to 3 tabs AM & PM but she doubted that I would be able to process much more than that.  Additionally, Dr. Chavez, felt if I was able to tolerate 6 cycles (18 weeks) successfully then just call it a win.  I spoke with Dr. Beth about all of this and she was in agreement.  So we had a plan – until today.   

As I wrote before if you have a DPD Enzyme deficiency, either a lower amount of the DPD Enzyme OR if you have none at all taking Xeloda can lead to horrible side effects OR in some cases fatal side effects which can include death.   Honestly, I can’t say it enough – so now I will say it here:  BE YOUR OWN ADVOCATE BECAUSE NO ONE ELSE WILL!!!!

If you recall, I did my research and found that >10% of people have this deficiency and run into issues when taking Xeloda.  You’d think that this simple blood test to check to see if you have the deficiency or not would be standard protocol before taking Xeloda – but it’s not.  (Can you believe that?)  Therefore, I requested the test be done and insisted that I would not begin the oral chem until I receive the results back.   PRAISES THAT I DID – and here’s why.  

Moments ago, I received the call I’d been waiting for from Dr. Beth’s office.  It turns out that I am considered an intermittent processor when it comes to the DPD Enzyme.  Basically, what that means is that I have some of the enzymes but not as much as a “normal” person would have.  This means that IF I had not insisted upon the test and IF I would have started taking 3 pills morning and night I could have ended up with really bad (possibly horrible) side effects from taking this medicine.  Dr. Beth has now instructed me to start with a much lower dosage than what she originally thought – in fact, we are starting at half the dosage that she originally thought I could handle.   The original plan was for me to start with 3 pills in the AM and 3 pills in the PM for a total of 3000 mg a day (1500 mg in the AM and 1500 mg in the PM).  Now that we have the results we are starting with two pills in the morning and one pill at night, for a total of 1500 mg a day.  The oncologist’s office will also be checking on me each week to discuss symptoms, how I’m feeling, etc. and they will be keeping an eye on my liver and kidney functions watching for any toxicity buildup that could happen.  I, of course, will be calling the doctor with any and all side effects so they can adequately manage and/or discontinue this medicine if I am unable to tolerate it.  Here is an article that does a good job explaining what I have summarized above – link here.  I am also adding another link to help understand the DPD deficiency – found here.

In closing, for this week PRAISES for:

• Yia Yia coming home
• Vickie to enjoy her vacation
• ME BEING MY BIGGEST ADVOCATE

And for this week the PRAYER request is:

• For me to tolerate the Xeloda without horrible side effects and no damage to my liver/kidneys/etc.
• For Yia Yia and her healing
• Safe travels for Christian – he’s leaving tomorrow to visit his biological mother for the month of July 
• Safe travels for Vickie coming back from Greece next week
• For Mano and I as we continue to navigate these waters.  They continue to be choppy but our faith tells us to keep going.  

And to all of you – Thank you again for everything.  For the cards, the gifts, the texts, the prayers and the love you have shown me and my family, AND for those still in the trenches with me (you know who you are) please know that YOU ARE NOT ALONE!  I am here if you need anything.  Call me, text me, whatever.  Our God is faithful – just trust in him!

I will write more soon – promise!

Xo, 

Tracy