The Modified Plan

I want to start out by thanking by mysterious benefactors. There are people out there leaving me gift cards for restaurants and grocery stores anonymously and I want to say a huge “THANK YOU”. I try to always send thank you cards to recognize the nice things that people are doing for me every day, every week. I know during the course of this treatment, I have probably missed writing a few thank you cards, but please know that I appreciate everything that everyone is doing to help in this battle. From the tangible items like gift cards, meals, cards, emails, to the esoteric kind words, conversation, good energy, prayers; I thank you. Each gesture of kindness has not passed without being noticed and appreciated. I can’t imagine how I could have made it through these last seven months without my far-reaching support system. You are amazing. You fill my heart.

So, on to the new treatment. I am glad that I acquired kick-ass shoes yesterday, because I didn’t know it at first, but I was definitely going to need them. I arrived promptly at 9am to have my blood drawn and tested to make sure that my counts were adequate to receive treatment. As I have related before, the plan was to start the new chemo, Ixempra (that’s the easier brand name) and we were supposed to keep one of the previous chemos, either the Carbo or the Gemzar. The nurse who was taking care of me, Suzie, said that the order was only for the Ixempra, she saw nothing about any other drug. Confusion ensured. Finally, my primary chemo nurse, Michelle, came and lined out the situation for me. I cannot have Ixempra with Carbo or Gemzar. The pairing of those drugs have not been clinically tried and the insurance company will not allow payment if they are paired together. The reason Dr. Rado wanted to keep one of the previous drugs is because my lungs were clearing up so well, in fact amazingly well, that he wanted to keep one of them to work on my lungs and the new drug to start working on the bone lesions. After I picked my jaw up off the floor, I murmured a few expletives regarding insurance companies and asked what we were going to do. Can I appeal this decision? Why hadn’t anyone told me before so I could start the appeal process? It was explained to us that Dr. Rado put in the order for the chemo on Wednesday and it was immediately kicked back because it wasn’t an FDA approved combination of drugs, by the time they found out, there was really no use calling me, as I was going to be here in the morning anyway. The only drug that is approved for use with Ixempra is Xeloda. So the plan had changed and instead of Ixempra and Carbo, I will take one round of Ixempra, see how well I tolerate it, and if I do okay, we will add the Xeloda next round.

It was all I could do to keep from crying. How could my insurance company do this to me, how could they dictate to MY doctor what drugs he can use to save MY life?? I was incensed, at the injustice of it. Because of insurance requirements, the drug that is clearing up the cancer in my lungs is being taken away. Mike was beyond furious. I don’t know if I have ever seen him so angry, the fury just bumbling under the surface of his calm façade. I know he didn’t want to upset me, but I could see it peering through in every work and action. How dare they do this to the one he loves?

I promptly called my benefits contact at work to get the number to file an appeal. An appeal will take time, so in the interim, we move forward with the modified plan.

My lab work came back and most of my counts were in the normal range, except for my platelets, which were still only up to 111 after almost two months of being off chemo. (Normal is 150) Amazing. Maybe it was divine intervention because of the way that Carbo hammers the platelet levels, perhaps if I had received it yesterday; I wouldn’t have been able to tolerate it. Maybe I would have landed in the hospital again. Only God knows. But suffice it to say that I was surprised at the lack of rebounding. But all I can do is put my faith in God and my trust in my doctors and move forward with treatment.

This is a much longer chemo treatment. The Ixempra requires 45 minutes of pre-meds which include 3 anti-nausea medications and a high dose off Benadryl to stave off any allergic reaction. I’m going to throw this out there…I hate Benadryl. I have to take IV Benadryl (which is a much higher dosage than over the counter) when I get my platelet transfusions, and it turns me into a zombie. I can’t hardly talk or think straight. It basically makes for an entire wasted day. But, it’s better than having an allergic reaction. The infusion of Ixempra is over three hours. Then I get my bisphosphonate drug, Zometa, which takes about 30 minutes. So, I was at the Cancer Center until almost 3pm. Long day.

Once I began to sober up after the Benadryl started to wear off, I had a conversation with Michelle asking her to talk to Dr. Rado and ask him if he wants me to go through the appeal process for the Carbo. There are potentially many battles ahead with insurance, is this the hill we want to die on, so to speak. Before I left, she related to me, that Dr. Rado wants me to hold off on the appeal. He wants to try the Ixempra, add the Xeloda next round and after three rounds, we will do another CT scan. We can always add the Carbo and/or the Gemzar back in if we need to.

So I keep the faith that this will work. The Carbo and the Gemzar have done their job beating this back in my lungs, and now the Ixempra and the Xeloda will finish the job and also beat it back in my bones, helped along by the Zometa.

Whew. Long story. Thanks for hanging in there with me.

So I took my fabulous red shoes and went home to await the side effects. What will they be? How will I feel? So far, I’m taking a lot more anti-nausea medicine than I did with the other chemos. My back was really hurting last night, and I don’t know if that was the chemo or the Zometa. The fatigue hasn’t set in yet, so mostly I’m battling a sick stomach. Mike has to give me a shot of Neulasta today to bump up the white count, since Ixempra is really hard on the white cells. Neulasta will make my muscles and joints hurt. And I mean hurt. Lots and lots of pain meds for me tonight. My hair will probably start to fall out in about 14 days; the odds are pretty high that I will be bald by the beginning of the next cycle. This is a three week cycle. Day one chemo, then start again on day 21. Nothing but blood tests in-between. The Xeloda I get every 28 days.

I’m feeling okay so I’m going to head to the office for a few hours and I still plan on picking Jessie up from day care as I do every Friday night. He won’t be spending the night, but at least I’ll get to spend a few hours with him.

Thanks for your prayers and all the good energy you send me. Keep it coming. I’m going to need it!