Thursday, October 6, 2011

Day 9 - 10/6/11

I am mad at Xeloda. Of all the treatments that I have had in the past three years, Xeloda is the one that is beating me down like I stole something. This is Day 9. I can not wait until Day 14. I'll then have a week off of this chemotherapy pill. I take three pills of 500 mg each in the morning and then three more pills at night, every day for 14 days. I am also in Arm A of the clinical trial which means that in week one of the three week cycle, I get an hour infusion of the trial drug, Ramucirumab DP. I was told that the trial drug is similar to Avastin, which I had prior to this chemotherapy regiment. I can blame the bleeding from the nose on the trial drug, but all of my other problems are probably from the Xeloda.

So far, I don't have explosive diarrhea. I have the opposite problem. Constipation is just as bad, but I know the solution to that-Senokot. I'm also not having the hand-foot syndrome as of yet. But these awful headaches are debilitating. They are sharp and intense and tend to last for hours or at least until it's time to take the next dosage. And the fatigue. Oh, my goodness! The fatigue has knocked me on my butt. I've said this before, but there is no comparison between fatigue and tiredness. They should not even be mentioned in the same sentence. Tiredness can be resolved. You run a hard marathon, and you're tired at the end. You eat, you shower, you nap, and then you're good to go. With fatigue, you nap, nap, and nap, and you still feel like you've been hit by a Mack truck. Taking a shower or eating a meal exerts energy that you don't have. We weren't expecting my red blood cells to take a significant dive so soon, but that's exactly what happened. Yesterday, my oncologist said, "you're more anemic than your usual." Rest assured, we'll have to start the Aranesp injections again for that. I'm having difficulty breathing again, and I'm cold all of time. I have a low grade fever, but not high enough to call the treatment center. And the worst is the nausea, all day and every day. Therefore, there is very little eating and no energy. I've dropped two pounds in nine days. I can always use some weight loss, but I would like for it to be on my own terms.

My neuropathy from the Taxol continues. I still have numbness, tingling, or painful sensations in all of my fingers and toes. The good news is that I am growing a new nail on my right thumb, since the other nail died and fell off. It looks like the other nails are growing and pushing the dead nails forward. As the dead nails are pushed forward, I just trim them down to the finger or toe and then repeat the process in a couple of weeks. My hair is coming back beautifully. I don't have to do anything to it but wash and go. I love that.

Back to why I'm mad at Xeloda. I feel bad, all day dreading the next dosage of Xeloda. While it's making me sick, I hope that it is kicking the cancer's butt. It's not fair that the good cells of my body get the brunt of what Xeloda can do. Those bad cells should also pay the price.

On top of all of that, I have chemo brain to the nth degree and can't focus on anything. I've been thinking about taking a leave of absence from work. I'm not doing my job, because I can't think straight when I'm nauseous and hurting with no energy all day. I've been in and out of the office for appointments or sickness so much that I'm barely here long enough to get anything done. The maximum I can take without pay is 12 weeks (60 work days). I won't get my salary, but I get to keep my insurance, which is the most important part. I've been reading the manual for the Family Medical Leave Act to see if I really want to do this. The only thing is that if I'm feeling this bad on Day 9, how will I feel three months from now when the leave of absence is over? Chemotherapy has a cumulative effect. It gets worse, not better.

Speaking of insurance, I can't pick up the Xeloda pills from the hospital or any local pharmacy. I have to have them delivered to my house via Fed Ex from the insurance company. They have to have my credit card on file to collect the $90 co-pay for a 14-day supply of pills (84 pills). I don't mind the co-pay, considering a 14-day supply of 500 mg pills would cost me $3,000 out of pocket. I'm not sure how the drug company justifies $35 per pill, but that's a whole other issue that I can't do anything about. I missed Tuesday night's dose, because the research nurse and I have been haggling with the insurance company for a week. At the end of 14 days, the research nurse and I both have to place an order for the next cycle. It's a crazy process and a waste of time and money if you ask me. "It's a very expensive drug," is the only answer that I received when I questioned the insurance company representative. But you're making it even more expensive by sending it Fed Ex to my home instead of allowing the hospital to give me the pills while I'm there getting the IV chemotherapy drug, risking me a missed dose. This makes sense to the insurance company? In all honesty, the research nurse had to scramble around to get me 84 pills from free samples for my first cycle. If I depended on the insurance company, I would have had to wait another two weeks to start this regiment.

I'm just frustrated. I feel like I'm wimping out and that I should be handling all of this much better than I am. I know the routine. I play by the rules, but someone is changing the game on me. Xeloda and the trial drug are supposedly easy and very tolerable for many patients, so why am I having such a difficult time so early in the regiment? I'm wondering if I'll ever wake up feeling good again. I would love to wake up without a body part hurting, without feeling nauseated and fatigued, and without the headaches. I guess Xeloda is not all bad. My pelvic bone and spine have calmed down again, and I haven't had any more chest and back pains, so I'm off the prescription pain killers for a while. I'm just taking the Advil for the headaches. I have one anti-nausea medication. I'm in another insurance haggle for the second anti-nausea medication, something about it costing almost $7 per pill out of pocket (shaking my head and tossing my hands in the air). I'm still on the high blood pressure pills because the effects of the Avastin are lingering and will probably continue with the trial drug. I am a walking medicine cabinet.

I can't run. I am barely walking. My last race was the Tour d'Esprit 24 Hour in Memphis, TN. The nausea was really bad, so I never ran an entire one mile loop. With the nausea, I couldn't eat, so my energy was down, and I took three much needed "naps" in the car. It was a struggle, but I shuffled around the loop until I accumulated 55 miles. Even though it was tough, I was so angry with the cancer and the Xeloda that I just kept going back out onto the loop. "I can do one more mile," was my mantra. I'd do one or even two miles and then I would have to take a little break. I would see everyone moving smoothly on the loop, racking up mega-mileage, and I would rise from my camp chair and join them for one more mile for 24 hours. When my running buddy, Jameelah (GA), saw me struggling back out onto the loop, she said, "the mind is willing, but the body says no." If she only knew how close my mind came to agreeing with my body.

This past weekend was a planned break from racing. It's a good thing, too, because I was basically in the bed from Friday evening until Monday morning. I am registered for St. Pat's 24-Hour this upcoming weekend in South Bend, IN. It's an expensive race that I think will be a DNS (did not start). I could suffer through to get at least the marathon distance or a 50K, but suffering is no fun. The whole point of running is to have fun and enjoy being outside. Day 14 will be on Wednesday. I'll see how I feel on Friday with a two day break from Xeloda before I make that long drive to South Bend. The way I'm feeling right now, I know that I can't go.

Damn cancer. Damn Xeloda. Who told them it was okay to interrupt my life?


  1. I am so sorry. Does your organization participate in VLTP (voluntary leave transfer program)? Since it is the end of the year I bet you lots of colleagues might be giving up use or lose leave. I know that I gave several weeks during the years when I did not travel as much (my first few years at the FDA I was still recovering from my car accident in 1195). And if my org would work with yours I would happily donate leave for you!

    Take care of yourself and know I am thinking of you.

  2. Hi, Tammy! We have something like the VLTP. It's called Sick Bank Leave. Anyone who's in SBL donates one day a year. Our annual and sick leave days roll over to the next year, so we don't lose any days if we don't use them. After you have exhausted all your annual, sick, and comp time you can tap into the SBL for an additional paid 90 days. Members of SBL can also donate days specifically for you if you run out of SLB time. It is something I'm keeping in mind, if I get to that point. Enjoy Boulder this weekend!