Update for September 25, 2014

I completed my third chemo treatment last Monday. As my doctors predicted, each week takes a tougher toll on me physically. The effects are cumulative and as of this week, are now very visible.

Currently my treatment regimen consists of two standard chemo drugs, Paclitaxel and Carboplatin, and a clinical study drug called Panitumumab.

Clinical studies are quite interesting, and while I don’t want to bore you with details, I will tell you that each study has four phases. I am in a phase two study with the Panitumumab.

Phase two allows 40 participants and I am number 29. I don’t have much information at this time on how the 28 women before me fared while on this treatment, but I can tell you, many of the side effects they warned me about have affected me. The skin rash and acne are the most notable.

For someone who has always had clear skin, this has been quite an adjustment for me. After week two, my nose and chin resembled that of an adolescent struggling to adjust to the many hormone changes happening within their body.

I also developed tiny red bumps across my neck and chest and all over my back. In addition to the unappealing aesthetic changes, the sores hurt. Not gonna lie, I’ve been a little whiny about it.

Okay, I’ve been a lot whiny about it.

As silly as this sounds, given the severity of what I am currently going through, one of the most upsetting side effects has been the inability to wear lipstick. I love lipstick. It’s my most favorite makeup and brightens my mood.

With a face covered in acne, makeup is no longer an option, and I have missed my lipstick so much! I keep looking at the dozens of brightly colored tubes sitting idly on my vanity and dreaming about how good it would make me feel if I could put some on.

Crazy, I know, but lipstick is almost medicinal for me, and the lack of shiny color on my lips has made me sad.

Unfortunately, last week, as the days progressed, so did the sores. When Dr. Chavez-McGregor saw me Monday, she was concerned about the severity of my reaction. Because of my high toxicity levels, my last chemo only included the Paclitaxel and Carboplatin.

She prescribed a gel to apply to the sores, but it did not help. She has since given me a strong antibiotic and a steroid (Prednisone). They seem to be helping a little, so I’m hopeful the sores will continue to clear and give me my face back.

Next Monday before I begin treatment, I am scheduled to see a dermatologist and another doctor, who is running the Panitumumab study, so they can decide if I am able to continue with the clinical trial at this time. They may adjust my dosage, or possibly discontinue it all together.

I can choose to discontinue participation in any of the clinical studies I am involved with at any time, but my thoughts at this point are that above all else, I want this cancer eradicated with no chance of recurrence. If the Panitumumab is doing what it is supposed to do, I’m committed, sores or no sores.

One positive take, is that the presence of the sores/rash means it is working. It is killing the cancer. My research nurse called today and reminded me that the sores I see are just visible reminders on the outside of my body of the battle raging on the inside of my body. When you see me it is very obvious the Panitumumab is kicking in and doing its job!

So as long as it’s working, I’m going to keep fighting, even if I have to do it without lipstick. 😉

Without the addition of the Panitumumab, I thought my chemo might be more tolerable this week, but I was very, very wrong.

It was brutal.

My doctors have been infusing Zofran (for nausea) since I started treatment, but this week they also had to infuse Benadryl. The Paclitaxel began killing my hair follicles while it was infusing Monday and it felt like my scalp was on fire!

I’m not sure if the Benadryl helped, or just knocked me out so I didn’t care anymore, but I am not looking forward to that experience again next week.

I was in so much pain I didn’t even get to drink the Cran-Grape my nice room service attendant brought me. You know I was miserable if I actually wasted the Cran-Grape.

As if the treatment wasn’t traumatic enough Monday, that night, the effects of taking Zofran for two weeks kicked in and it was almost more than I could handle. I will be kind and spare the details, but I was pretty sure I was going to die right there in that hotel bathroom.

It was agony far worse than labor pains, and the only other details I will share about that night is that I am so thankful for Patrick. Marrying that smart man was the best decision I have EVER made. I love him more than life.

Oh, and prunes are now a staple in my diet.

I haven’t had any further burning symptoms on my scalp, and my curly hair is still holding on, but I’m afraid its days are numbered. Maybe if I can wear lipstick again before my hair falls out, I’ll be able to handle that maelstrom much better when the time comes.

This week, besides dealing with the sores (which are healing) and an extremely dry face and neck, my only other major symptom is fatigue. It varies day to day and there doesn’t seem to be anything I do to prevent or hasten it. It either is or isn’t.

Today, I am tired. Very, very tired.

I have noticed that God seems to give me exactly what I need when I need it. I have been able to help Creed each night with his homework, spend time with Maddie and help her out with a project or two, make lunches, and help Patrick a bit when he’s getting them out the door in the mornings. As long as I feel that I am contributing (even in small ways) in household chores and taking care of the kids, I am okay.

Part of Creed’s reading homework this week was the very timely story of Joseph. He read about Joseph being sold as a slave, being falsely accused and thrown into prison, and then years later, favored as second in command under the king.

Although he had a very hard journey from the pit to the palace, he ultimately saved many lives in the midst of the famine because of the wisdom he used in storing grain during the seasons of plenty.

When Creed was finished reading we discussed how awful it must have been when he was sold as a slave and thrown into prison. Those times in Joseph’s life were not easy, but he used those despairing days to draw closer to God and become better. In God’s perfect timing, he was used in a mighty way to save the lives of not just an entire nation, but also, those whom he loved the most.

Without missing a beat Creed said, “I know mom, I know. It’s hard right now, but if we ask God to help us, He will make us better,” and then he paused and said, “Being better isn’t easy.”

Oh my sweet boy, such a heavy lesson to learn at such a young age, but God is surely using this time to teach him these truths. Yes, this is HARD. It’s hard on all of us. But God is using the bad to make us better. Only He can do that.

We are learning. We are growing. We are loving. God is honoring His word in our lives. We will come out of this one day, and we will be better. I’m still holding to that, and I’m still believing it will come to fruition in the lives of all of these precious people who live with me that I love so much.

The enemy is trying to mess with us, but just as Joseph told his brothers when they realized who he was; the brother they had sold into slavery all of those years ago, “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” (Genesis 50:20 NIV)

When evil is brought against you, God can turn it to good. He will bring it to pass in your life if you will allow Him to use your present circumstances to make you better instead of bitter. As we are learning, it’s hard. As Creed so wisely noted last night after his reading homework, “Being better isn’t easy.”

It’s not easy at all.

However, I’m resting in this promise; there is purpose for our pain.

If you’re going through a tough time, please remember God’s promises to you. There is purpose for your pain. It isn’t easy, but you will be better because of it and God can use it for your good and the good of others.