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On March 25th I had my rescans to see how my tumors were responding to treatment thus far. Last Wednesday, my oncologist called me to tell me that although they are much, much smaller they are still there. While this is great news that my tumors are responding to treatment and I still had three cycles to go, I’m insane. I had hoped that since the tumors have no longer been able to be felt on a physical exam that would mean that they were gone. I wanted my Doctor to say we had achieved complete pathological response. I had built this conversation up in my head so for it to not go my way I was disappointed. On top of this mildly disappointing news, I also had a reaction to the dye they use for the MRI and spent the week incredibly ill. Let me be very clear, my oncologist is very happy with the scan results I’m just insane and want the tumors to be gone.

These rounds have been so hard on me physically. I’m grateful for my brother and sister in law grabbing the kids for the evening so Jeremiah could check on me after treatment Thursday. Then to my incredible neighbor who came in our house while I laid on the bed and she rubbed my back and just let me feel everything I am feeling. I’m grateful for my in-laws who took the kids for the whole weekend so Jeremiah could work and I could sleep all day Friday, Saturday and most of the day Sunday.

When people ask how I feel I still say fine just exhausted but I think I would like to change that answer. Overall I’m still fine, still tired and still won’t turn down pizza. However, if you are familiar with Harry Potter, there is a scene in Half Blood Prince where Harry is giving Dumbledore poison and Dumbledore is begging Harry to stop. Harry promised before they began that no matter what Dumbledore said that he would keep going, so that’s what Harry does. He lies and says “just a few more professor” and “you’re almost done professor”. I feel like Dumbledore. My tight circle around me has had to remind me more times than I can count that I can do this and a few more times but friends I’m tired.

This week I also had the pleasure of meeting with my plastic surgeon, he’s wonderful. He walked through all my options for reconstruction so I’ve got a lot to think about. I could stay flat, get implants or have what’s called a DIEP flap surgery. On the 14th I meet with my breast surgeon who will be doing the actual mastectomy, I’m excited to get this surgery scheduled. I feel like my body has been invaded and it’s not even mine anymore. I know that once chemo is done we’ve got at least three surgeries but I’m ready for that road to recovery instead of this endless circle of exhaustion.

Treatment 13 a done! My updates this week are a little later because treatment is across two days. Yesterday I started two new chemo drugs and unfortunately they have me down. I went to sleep Thursday at 6:30pm and woke up at 4am. I have steroids I have to take on day 2 and 3 of treatments and this will be helpful with steroids. the drug pictured below is nicknamed “the red devil” and fun fact it changes my tears to pink. I have the most trouble getting this it’s not a drip medication it’s one they have to sit by you and inject slowly.

On Friday after treatments I get a shot in either my stomach or my arm to help boost my white blood count. I don’t enjoy shots so I opted for a shot in my stomach because I didn’t think it would be as painful. Overall I feel fine but I’m tired and I am having some bone aches. Now the next time I will have treatment will be April 3rd so I will be able to get some rest and recover!

I still don’t have a sense of taste, everything has to be an intense flavor before I can taste it. I can really taste pineapple, kiwi and blackberries. Otherwise I don’t have any serious side effects and I’m praying it stays that way. Tuesday we have rescans and my doctor told me she would call me after she reads my results because she knows I can’t be trusted to not read the app and see what the results are.

Let’s see where to begin.. here’s a little background on my liver enzymes. When running my labs there are three levels they review my bilirubin, ALT and AST. My bilirubin level last week was 0.8 and you want that to be around 0.3-1.2. My ALT was 275 and you want that between 0-34. My AST was 106 and you want that between 0-34 as well. My body typically sits at 1..-1.3 when they check my bilirubin, this data goes back to 2012. We went ahead last week and pushed through with treatment to see how my body responded to treatment since my bilirubin was (finally) within normal range even though the other two markers were almost 10x normal amounts. This week my doctor confirmed I do have Gilbert’s disease (again, completely benign but there are chemo medications I cannot take because of this) and again this week my bilirubin was in normal range and my other two markers were down a lot as well. Below is a picture of what my levels were like last week.

I don’t know if this is related to my diet changes or if we were just lucky but I am very happy that we were able to continue treatment with no issue. With that being said, today was cycle 4 day 1 aka round 10. Technically we are halfway because I’m doing 20 weeks but I only have 6 treatments left in total.

This week I scheduled my new scans to see how my tumors are reacting to the chemo as well as my appointment with the breast surgeon. They aren’t for another month but I am already gathering a list of questions for them to answer. Not only about what type of surgery either mastectomy bilaterally or unilateral and if I am a candidate for DIEP flap surgery or not versus getting plastics. DIEP flap surgery is when the surgeon removes a flap of skin, fat, and blood vessels from the lower abdomen, preserving the abdominal muscles. It’s essentially a tummy tuck so I would have more incisions to heal from. There are pros and cons to both I am just adamant that I never have to do any of this again.

I want to say a huge thank you to every single person who has sent food, notes of encouragement, texts, calls and care packages to me. If you didn’t get a personal thank you please know that I received the item you sent me but there was nothing included for me to know who sent it. I’ve got two freezers absolutely full of food and I appreciate it so much.

I still feel pretty good, my new medication is definitely doing its job. My best days are Thursdays and Fridays as the pre-meds are still in my system then I start to feel more like my normal self by midday Saturday. It’s still surreal that I understand things that I never even thought twice about. Now I talk about doctors appointments, labs, I understand the nurses and I am able to ask questions about my treatment. As we get closer to starting phase 2 in two weeks my anxiety is going up. I trust my care team but any change makes me incredibly anxious. My doctor tried her best to calm my fears about the new drugs and about my scans but my brain will do what my brain wants and until I know exactly what will happen I’m going to worry about it.

“The Lord is my shepherd, I shall not want
He leads me by still waters ’til my fears are gone
Though I walk through the valley of the shadow of death
Oh, I know You are with me, my Father, my friend
Your goodness and mercy will follow me all of my days
I know by Your still waters, I’m safe” – Still Waters by Leanna Crawford