Metavivor - 10/31/11

On this last day of "pinktober", I came across an article that really touched my heart.

http://www.hometownannapolis.com/news/TOP/2011/10/28-39/Local-woman-starts-nonprofit-for-metastatic-cancer.html

I am warning you that I am probably going to become more vocal about MBC because I am constantly bombarded with too much information that is disturbing about this disease. My MBC sisters are dying on BCMets.org, my main source of information. I get accustomed to reading their posts, then they go into hospice, and then they die. I feel like I am losing a friend or family member each week, and I have not even met any of these people. I am not an active participant on the List, but I've gotten to know them from their posts and from sharing some of their experiences. They have become a part of me, a part of me that I lose every time I hear that one of them has passed.

Did you know that from all of the money that has been raised this year, only 2% will go to research to keep MBC patients alive? I'm guessing that billions of dollars was raised this year. Think about how much pink you've seen in the last 31 days - the walks, the runs, the NFL, the ribbons, the bracelets, and the t-shirts. MBC will take away 40,000 people this year, and out of 31 days, we had one day, October 13, to raise awareness about us. I know there are a lot of diseases and a lot of good causes out there, but please think before you pink next October. Think about www.metavivor.org/ which donates all of its dollars to research for metastatic breast cancer. We are so far past awareness. Who does not know something about breast cancer or someone who has or had breast cancer? It's time to change the focus from awareness to action. I cringe every time I hear that if you catch it early, then you're good to go. That's not always the case. I thought that I was good to go in 2003, and here I am just eight years later with cancer throughout my body. I celebrated my five year anniversary after my initial diagnosis by finding out that the breast cancer had metastasized to my pelvic bone and spine. I'm aware. Now let's donate more of this awareness money to research to find a cure to the breast cancer that kills - Metastatic Breast Cancer, Stage IV Breast Cancer, or whatever you want to call it.

I am so angry! I mean kicking, screaming, balled fists, and ready to fight kind of angry. I have to do something. I'm a part of the problem. I have to make efforts to become a part of the solution. If I ever get my body to cooperate again, I will be planning a short journey run/walk, probably across Tennessee (approximately 455 miles), but preferably along the Natchez Trace Parkway (approximately 444 miles) to raise money for Metavivor. Before that, I have to gather some courage to let the cat out of the bag. I'll explain that in a later post, but once that's done, it's on!

Cycle 2 - 10/19/11

My MBC sister with the same name as mine is not doing well. She's in a wheel chair now and has traded in her oxygen tank for a more permanent portable oxygen machine that she carries in a leather bag around her waist. She also has a drain in her stomach to collect the fluid that is building up. She's lost another 10 pounds. She wants to ask the oncologist for a chemo break because her lungs are also filling with fluid. But she's hesitant about temporarily stopping chemotherapy because her last scans showed stability. Clearly, the chemotherapy regiment is working, but at what cost is it to her quality of life? I asked again about her drugs, but she still can't remember. However, she says that she is definitely not in a clinical trial. She's not giving up; she just needs a freaking break from this madness. I understand what she's saying.

The lab nurse comes to the waiting room to push her back to start collecting her vitals. I am left in the waiting room, worrying about her and kicking myself for being such a wimp. I thought that I had made up my mind about taking a medical leave of absence from work and giving up racing for a few months because Cycle 1 has left me void of all energy, mental focus, and lots of pain. My rest week still involved nausea, fever, headaches, neck pain, and fatigue. Last night was the first night without the fever, headaches, and neck pain. I think that I even slept through my hot flashes, because I don't remember waking up to kick the covers off my sweating body.

I waited until 8:00 a.m. to start taking my Xeloda pills. I stared at them on my desk at work for about 30 minutes, dreading my next round of side effects, the same side effects that have not dissipated completely from Cycle 1. Cycle 2 increases the Xeloda dosage by 300 mg per day. For Cycle 2, I will take three 500 mg pills plus one 150 mg pill in the morning and at night, every day for 14 days. In the treatment center today, I received IV infusions of Benadryl, a steroid (Decadron), an anti-nausea medication (Aloxi), the bone building medication (Zometa), and Ramucirumab DP (the clinical trial chemotherapy drug). Including the lab work, seeing the oncologist and the research nurse, and getting the infusions, I was there for six hours today.

I could have been out of there in five hours, but I was a little out of it after the Benadryl infusion. I'm so tired these days that the Benadryl knocks me out. My oncology nurse noticed that I was zoning out when she changed out the empty bag of Benadryl for the Decadron. At some point after getting the Aloxi and Zometa, my research nurse came to the treatment room to get two more tubes of blood. They were going to take it out of my port, but it was being fussy today. Infusions went in easily, but the blood return was slow. My oncology nurse did not believe she could fill both tubes from the port, so they sent in the lab nurse to find a vein in my arm to draw from. I had already been stuck twice earlier in the lab for blood draws. In the mean time, they turned the pump off because the research nurse did not want the Ramucirumab DP in my system. Once the lab nurse filled the tubes, my oncology nurse could start my last hour of infusions, but she forgot about me (every chair in the treatment room was filled, so I'm not blaming her) and I fell asleep (that was my fault).

At some point, I realized that the pump was not on. I finally got my oncology nurse's attention and told her I needed to be started up again. When she looked at the paper work, she asked if I knew how long I had been waiting. I had no idea I had been out of it for an hour (sigh). After the chemotherapy drug infusion, I have to wait an hour before leaving to make sure there are no adverse allergic reactions. With this particular chemotherapy drug, if there are going to be serious side effects they will occur during or right after the infusion.

I don't know what to do. Today I gave the papers for the medical leave of absence to my research nurse to be filled out. I was planning to start the leave on November 1. Now, I'm hedging, trying to figure out how I can work through the side effects. The steroid really works for my pain, so I'm thinking clearer this evening than I have over the past few weeks. Has the last three weeks been so bad that I really need to leave my job for three months? Seeing my MBC sister today proves that it all could be much worse. Maybe I should try to stick it out for one more cycle? Maybe I'm giving in to the illness when I should gather my reserves and fight harder? But I am so tired of struggling and fighting. I'm not as strong as I would like to be.

I sent an e-mail to Mike (FL), the race director for the Ancient Oaks 100 Miler, to withdraw my entry. Fortunately, someone on the waiting list will get my spot. Now that I can't run, I'm having dreams about running. I'm moving carefree, fast, and happy in pretty places. They are nice dreams. No one is chasing me. And then I wake up, and I realize it's just another day without running.

One of these days I'm going to write a post that is not so whiny, but lately, my emotions are shot. I am so tired of drugs, injections, scans, hospitals, pain, and the ever spreading cancer. Everything tangible seems to be slipping out of my hands. I can do things, but I can not do what I once could. I'm trying to adjust to the new "normal", but the new "normal" sucks all of the fun right out of my life. This Tiger is different from the Tiger of four years ago. I miss her. I worked on her for years to be the person that I thought I wanted her to be. But she's tired, she's unfocused, she's in pain, and she can't run. She can barely walk. Some days she wants to give up, and that scares me because Tiger is not accustomed to giving up. And she wants to scream. But what good would it do? Tiger wants a freaking break from the madness, just like my MBC sister, but I'm afraid that if we take a break, it may be permanent.

God, help me. I can't seem to get it right. What am I doing wrong?

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?